The Coffee Klatch Blog

A Promise Kept - Marianne Russo

2011-05-01T05:10:00.000-07:00

A Promise Kept

Some promises are like pinky swears, little whims of a deed or intention to be kept. They started when we were children on the playground, in the school yard at pajama parties and created light hearted bonds of friendship. We were conditioned early to know the importance of "keeping promises" and the bonds that would be made or broken if not kept. These were lessons, good and bad, learned and felt, instilled in us to create loyalty and trust.

Some promises are made of love, passion and emotion. The promise to marry, to be there for good and for bad, through sickness and in health, to forsake all others and death do us part. The maturation of those little pinky swears taken to a completely different level and meaning. A promise often times impossible to keep. A promise that again teaches us, good and bad, learned and felt of the fragile nature of promises intended.

Some promises come from your soul. They are not always spoken, they are not given a ceremony, but they are there and they are the most important you will make. These are the promises we make to our special children. They are the ones born of a determination and courage that only a parent can know. These are the promises that keep us up at night and enduring all day. These are the promises, good and bad, learned and felt that we can never break. Why can't these promises be broken? It's simple. They come from our hearts in a place so deep they become a part of us.

I made a promise to myself and to my daughter, it seems like an eternity ago, of another lifetime. You will succeed, you will get through this, you will have the life you deserve and I will never give up on you.

For most parents this seems like a very typical promise to make to your child. For a parent with a special needs child struggling to function in a chaotic and frightening world it is anything but. These children test us to the limit. They test themselves to the limit. Every day of their lives is difficult, complex, dysregulated and gains are made in micro-doses. There are times we feel we will not be able to keep those promises we made. There were times I felt I would not be able to keep those promises I made. We not only fear our inability through our resounding inner thoughts but are often told by those we seek advice to adjust our expectations. To them I say, I totally agree. I totally agree that we need to adjust our expectations of how, when and where our children will make those incredible gains. I agree that we need to not only re-evaluate expectations but at times, many times, not have any. Most importantly I think we need to adjust our expectations of ourselves, who we are and for whom we are really setting them for in the first place. So yes, I agree our expectations need to be adjusted but never ever forfeited.

"You will get through this" a spoken promise. What was actually said was "You will get through this because I will be there for you, I see how much you are struggling and I will do whatever it takes, no matter what - we will get through this"

"You will succeed" an unspoken promise. Succeed is a subjective word. Success to one is something very different to another. For me success meant that my child will not only be educated, given the tools and acquired skills to get over her many hurdles, understood and accepted but most importantly respected for who she is. I don't measure her success with trophies or awards, class standing or popularity. I don't measure her success by others. I measure her success by her own personal achievements and mastery of her once deficits. Her success is her own and WE earned every drop of it.

"You will have the life you deserve" the promise too important to say aloud. The promise that says happiness will be yours for the taking.

Keeping these promises is no easy feat. The obstacles are enormous and parents are constantly put under a microscope. Special needs parents are often perceived as dramatic, unwavering, filled with a sense of entitlement, over reaching, and inflexible in their pursuit of accommodations and treatments for their children. We are a force to be reckoned with that's for sure. With the confidence that comes from becoming an informed educated parent we learn not only every nuance of our child's disorder or disability but the true meaning of being an advocate.

Advocating for the right venue, style and focus of education will be key. Focusing on the positives of our children instead of listening to the negatives will empower not only us but our children to reach goals. In our doing so we not only are standing up for our child but teaching them to stand up for themselves. We are teaching them to self advocate, to think outside the box, to be confident in their differences. There is not a day that goes by that I do not hear from a parent about how their child has not only met - but exceeded their expectations. These kids are special not only in their needs but in their brilliance.

Advocating for the right treatment in choice of medications, types of therapies and a thorough medical evaluation and testing gives to a mutual respect and true collaboration is met between clinicians and parents. No one knows a child like the parent. Being heard gives parents the validation they deserve and opens the dialog for better communication, calm and mutual respect with their advisors. They say it takes a village "They" are right. It takes not just any village but a village of people that have respect and acceptance of special needs children and the struggling parents and siblings as well.

Advocating for your child is in essence what keeps the promises. It is "getting" your kid when no one else does. It is understanding the unexplainable, the irrationality and the unpredictability of your child. It is taking a breath, taking a walk, regrouping and always coming back. It is gaining that trust in your child so they know, no matter what, you are their voice and you will be heard. It is keeping that promise and making it to yourself as well "We will get through this"

"You will succeed, you will get through this, you will have the life you deserve and I will never give up on you".

In the end, despite goals met or unmet, expectations adjusted or exceeded, subjective measures of success and the constant pursuit of happiness, the most important of all the promises is the last.

I will never give up on you.

Marianne

Generalizing The Specifics - by Elise (Aspergers)

2011-04-07T05:09:00.001-07:00

One of the main issues that children on the autism spectrum face is the ability to take what they learn from one situation and apply it in a totally different scenario. In fact the scenarios may not even be all that different, except for the introduction of a new dynamic or a removal of a familiar item, and the child becomes totally thrown off kilter and lost without the resources that they just learned. I analogize it to the issues HSB has in math. When given a math formula, and the appropriate number equivalents for the algebraic letters, he is able to apply the formula and even understands the reasoning and purpose. But if he is required to take that formula and apply in an unfamiliar word problem or with an unfamiliar set of numbers he will get lost. He is not able to generalize the specific information that he learned for that math equation. So too, do autistic children have issues being able to understand how certain appropriate behaviors are applied across the board and are general to the entire social paradigm.

So the question then becomes what do you do to help them understand how to accomplish this goal? What can you do for your child to help them relate their social lessons to each and every situation that they face? Interestingly, Dr. Temple Grandin accomplishes this task by keeping what she terms a running Rolodex of social situations in her head. She remembers them as if they were social stories, so that she is able to access and filter what she needs to accomplish, how, when and even why. However, that is not how most of our children will function. It is actually an intriguing idea and concept to use your brain as if it were a social story computer, but that is not going to work for everyone. Especially those like HSB who have a working memory shortfall.

So what do you do? Well to start with you do teach for the moment. As I always say you take each moment as it comes. You get them through the challenge of the hour and then when all is calm and all is quiet you sit them down and continue the lesson. You point out to them what happened and how it was dealt with. You talk it through with them what was and was not appropriate. You problem solve how they could have done things better or how they actually did terrifically. You make them understand that certain behaviors that they accomplished at that given moment are actually a general concept and that it should be applied liberally.

For example: How does someone behavior in a grocery store? You practice looking for your items. You practice walking appropriately in the aisles. You practice waiting you turn at the check out and you practice asking for help from one of the sales clerks. When they accomplish this goal of navigating the supermarket, you next take them to the toy store. You PRE-TEACH the situation by reminding them of the appropriate behaviors in the supermarket and how they apply in the toy store as well. You can use social stories, flash cards, and even basic children’s books on what happens when their favorite character goes to the toy store. You try to get them to understand that behavior in a public store is the same in every store.

Now without a doubt you do not have to follow the supermarket with a toy store. In fact, since our children do have the hardest time in toy stores, (the choices can overwhelm them and they are unable to choose a toy) I would actually even make that one of the last lessons you teach. But that is something you and you alone are going to have to decide how to handle and when it becomes a good idea. Something else too, don’t be afraid if your child is not following the rules to leave the store.

I can’t tell you how many times I have left a grocery cart full of items because the boys may have been acting up at that moment. If you cannot calm them down, you leave. There may be a myriad of reasons for the meltdown. There can be a sensory overload, which even if you calm them down initially may just erupt again, so be prepared. There may be the tantrum that they want cocoa puffs instead of cheerios for breakfast. Now this is the tricky part because you do know that our children do have a hard time making choices, but you cannot let them tantrum, you cannot let them meltdown and you above all cannot give into their desire to have both cereals, or give them the cereal you do not want them to have.

We have discussed on occasion the difference between meltdown and tantrum. The difference between whether your child is having issues because of the autism or issues because they are children and want what they want, when they want it, is something for which you need to be aware. However, the reality is that in many of these same situations you have to exercise the same outcome. You must walk away. Of course, it breaks your heart, especially when you know that it is a sensory issue or their inability to choose, but they MUST learn to choose. They MUST learn to channel their coping skills with sensory issues as well. Again, this is where the PRE-TEACHING comes in. The preparation before the excursion does help with these situations at times.

Now it doesn’t mean that it always works. In fact, there may come a time that you think that your child is never ever going to learn how to choose one item from a store, or understand that they just can’t have a certain type of food. I still remember the day that I took HSB when he was in nursery school to the local candy/toy store in the middle of town. I told him going in that he could only have one toy. We practiced it and we talked about it. So lo and behold he decides he wants two toys. I reminded him that he had to choose one. That was the rule. I even helped him by choosing the toy for him. But he started to tantrum that he wanted both.

Now you do understand that I am quite well aware that as a child on the spectrum he saw what he saw and he wanted it. That perhaps in many ways he was unable to truly choose and that without both toys his internal systems told him that his life was going to be miserable. However, that is not life. Reality is that you have to make choices. You must choose between toys. We teach this lesson not because we want to be cruel, but because we know that there will come a time in life that your child will have to choose between food and a video game or health insurance and a manga. You cannot begin to teach this coping skill when they are 30 years old. This is a skill that takes a lifetime of teaching. You must begin sometime. They have to understand, as all persons do, that there are limits and those limits are part of the social construct that they will be living in. Yes, as with all things in the social realm this is harder for them to understand and grasp than for any one neurotypical, but they can grasp it. It just may take an inordinate amount of time and make you feel like the wicked witch of the west.

Honestly this also goes for being able to curtail certain habits or the need to eat junk food and trying to have good sleeping habits. Limits, whether it is about toys, candy, spending and appropriate behavior lends itself to a better life and a more successful view of the world. And whether we think so or not, when they are three and crying their eyes out because you didn’t buy them that toy, they just may thank us one day when they are able to live on their own, successfully leading the life they choose for themselves. (OK not thank us, but at least not call us names anymore.)

By the way, the story in the candy/toy store ends with me actually picking HSB up and putting him under my arm and carrying him out of the store. I told him he had to choose and when he threw a fit, refused to choose we left the store. Did it have an immediate impact on his ability or desire to make choices? No. I would be lying if I said it did. It still took time and several more store episodes for him to understand that life is a series of choices, but he learned and even over time he learned that sometimes the choices you make are not the ones you want but they are the ones you have to deal with.

The reality is that there are basic concepts that our children need to be taught and they can be taught in many ways. Here is a small list of generalized behaviors:

1. Walking and speaking appropriately in a store.

2. Finding the item you want in the proper way- looking at markers in the store or asking for help appropriately

3. Standing in line to pay and waiting your turn if there is any kind of issue to be addressed.

4. Making sure that they have the right amount of money to pay for the item (of course this is for older children who may need to even pay for their own lunch at school). However, you can start this process by pointing out to your child how you are paying for the item and that the money is in the bank or even handing over cash when you pay. (It is interesting to note, that persons on the autism spectrum tend to have very bad relationships with money. They need to learn early. Budgeting and money management needs to be reinforced from a young age.)

5. They should be taught the proper etiquette when speaking to someone…thank you, please, your welcome…goes along way in gaining acceptance and help in society. Demanding and requiring someone to do something for you generally gets noone anywhere. It is essential that our children learn to recognize these attributes. So many of our children due to their speech issues, auditory processing and language issues, have modulation issues as well and their anxiety comes out in their actions/tone of voice. They may be very anxious in any given social situation and it may come out in the way they address someone in a store. The clerk will think your child is being rude or obnoxious when they are simply anxious. Try to get them to recognize how their body feels and you need to teach them how to cope with the public/social anxiety.

The truth of the matter is that as with everything that our children do, it is only through practice and more practice and even more practice, that they will learn to generalize these specific societal attributes. Now as far as math is concerned, it took a lot of work to be able to generalize the formulas and at times HSB still does not get it. But that is OK. We came to the conclusion along time ago that HSB was not going to be a theoretical physicist or an electrical engineer. But interestingly enough he is able to generalize criticism and attributes of video games and films. It seems that is where his abilities lie, which is a good thing considering that is where he has pinned his future career hopes. Of course, he is still going to have to learn to make choices and you know what, he still doesn’t like that, but luckily he doesn’t throw tantrums anymore, because at almost 6 feet and 200 pounds he is just too big for me to put under my arm and walk out of a store.

Until next time,

Elise

Behavioral Plans for Children with Autism Mae Wilkinson

2011-04-07T05:05:00.001-07:00

Do you remember getting presents or special privileges for making good grades in school? If so, do you remember how proud you were when your hard work paid off? Me, too, which is why I was so excited when Connor’s teachers suggested we implement a behavioral incentive plan at school. And, since I am no stranger to incentive plans (considering I’ve spent most of my career working on points-based rewards programs for airlines, hotel chains. telecommunications firms and credit card companies), I was delighted that I could contribute to the discussion.
But school behavioral plans are quite different than any other incentive program I’ve ever encountered. Some examples I saw reminded me of what a warden would implement for prison inmates, not what loving parents and nurturing educators would develop for elementary school students. Fortunately, the school staff and I worked together, and we eventually came up with a program that has helped Connor make progress on a key goal of working more independently. Here are a few general rules that I would encourage all parents and educators apply when designing a behavioral plan:
- Remember that a behavioral plan is a rewardsprogram. Negative reinforcers are not helpful, whether they be frowny-faces, ’strikes,’ or lack of privileges. Progress reports should be private — placing ’scores’ on the student’s desk for all to see is a negative reinforcer. Rewards and communications should also be age-appropriate – happy faces may signal to a 4th grader that he is still being viewed as a kindergartner. A rewards program is, by definition, a positive reinforcement for performing a set of desired behaviors. Negative rewards create fear and shame.
- Ask the individual to participate in measuring his own performance. Another tenet of rewards programs is choice. Having a teacher looking over the student’s shoulder and judging him takes away his ability to provide feedback to himself, which is a key component of self-correction. After all, we choose to fly one airline over another to receive miles toward a free trip. The same is true for students – the child must be actively engaged in the program to make the conscious choice to behave one way over another.
- Do not ask the student to do what he cannot do. The requirements to earn a reward should be attainable, not impossible. The idea is to motivate incrementallybetter behavior. That doesn’t mean bribing the child to do what he already feels comfortable doing. Instead, the goals should be based upon improvements that may be challenging, but are still withinreach. Asking a student to complete double-digit division problems when he is still learning his multiplication tables is unreasonable. Be aware that a student may need extra training and accommodations to be able to make the necessary changes. Modeling the appropriate behavior (we used the Model Me Kids Model Me Organization and Motivation social skills training DVD), preferred seating and assistive technology are examples of enablers that can help the child do his or her best.
- Make sure the plan goals and rules are simple, clear, and match those as stated in the IEP. For example, executive functioning objectives, such as turning in homework, completing seatwork, checking work, etc., can be translated into a behavioral plan goal, such as ”complete each task assigned (or ask for help) per each school day period with fewer than two prompts.”
- Rewards should be immediate and allocated based upon the magnitude of change. It is no fun to do what you are supposed to do only to have to wait two weeks to receive your prize. So, daily rewards, such as receiving a favorite treat or privilege (e.g., computer time) can help maintain confidence while reaching toward some of the higher goals. For example, if Connor can go an entire day doing what he is supposed to do without prompts, he receives some small gift - ice cream, a cookie or a song download. This keeps him engaged in the plan, similar to the membership benefits adults receives from a frequent shopper program. But the first time he accomplishes something extremely difficult, he receives a HUGE prize, or at least hugely important to him. These milestone awards should correspond with the child’s interests; for example, a new Lego set, an MP3 player, tickets to a baseball game, or the least expensive, but probably most special thing in the world, a special outing with mom and/or dad. In the adult world, this would be reaching sufficient points to earn a free airline ticket.
Above all, respect the dignity and the effort of the students. They are working very hard to please you. A behavioral plan may be tracked at school, but must supported with rewards and encouragement at home.

7 Simple Ways to Improve Your Childs Language Skills via Lorna Entremont

2011-04-07T05:03:00.000-07:00

By Karen Emigh from Autism Aspergers Digest

Excerpted from the article,”Breaking the Language Barrier” by Karen Emigh that appears in the March/April 2011 issue of Autism Asperger’s Digest, magazine. Reprinted with permission. The Autism Asperger’s Digest is offering a subscription special during April, to celebrate National Autism Awareness Month. Details follow.

Language and communication – we use them to get our needs met, express ourselves and bond with others. Except, that is, if your child is on the autism spectrum. The one comment I hear most from other parents of children with ASD is that they just wish their child could communicate “better.” However, given the structure of the English language, this is not an easily learned skill. Our language is filled with prepositions, adjectives, adverbs, pronouns, idioms and metaphors, clichés – all pretty foreign concepts to our kids who think in literal terms and tend to learn specific to general, rather than the other way around, as do typical kids.

Some easy ways I discovered to improve communication with (my son) Brett follow. You can use them with your child with autism, no matter where he or she falls on the spectrum. These techniques are not, in themselves, end products. They are actions meant to be adjusted and played with, so they become relevant for your child.

Attention
First and foremost, before you try to communicate with your child, before you try to teach him anything, get his attention. This may be as simple as calling his name, or you may have to physically move your child’s face to look you in the eye. Children give indications of attention in different ways, and for some kids with ASD, eye contact is not it. You know your child best. It’s not important how you get his attention just as long as you get it. Every time. Otherwise, you are probably just wasting your breath.

Show and TellChildren with ASD are very visual. Use this strength in teaching them language. Expand their vocabulary by bringing their attention to people, places and things, giving them names as you point them out. The grocery store is a great place to do this. If your child is not yet ready for the grocery store, start at home. But don’t just take your child by the hand and lead him around giving names to everything in sight. This makes it seem too much like work. Make it fun. Be creative! Sing the words sometimes for a change of pace.

For some kids, show and tell is best started with labeling items around the house. Again, these kids are visual and the added benefit of seeing the word in addition to hearing the word can go a long way toward better understanding. Plus, it helps the very concrete learner understand that the word is a representation of the solid object, setting the stage for better reading skills. Point out the things that are going into the shopping cart, into your pot of soup, or a few pictures in a magazine or video. There are opportunities all around you. When the child is familiar with people, places and things you can move on to more abstract language, like verbs and pronouns. Point out someone running in the park and say, “She is running” or a child swinging and say, “He is swinging.” Encourage him to repeat after you. Also, most of us have icons, or flash cards around our homes. Here’s a simple game you can play with them. When you first get in the car show your child an icon of someone on a bike, say, “bike” or “man on a bike” and then see who can find it first. This will also help him generalize concepts if he has only been relating to himself, his things, his home. The bike icon can now mean other bikes, as well as his bike.

All For One and Fun For All
Children are obviously more receptive to fun than work, and this is true at any age. Word games can be fun. They can be simple or more complex, yet are effective in teaching important language concepts along the way. The following games can help your child learn “who”, “what”, “where”, “when”, “why”, and “how” questions.

Adult              “When do you turn on the lights? When you ride your bike?“
Child               “No” (answer for him if he doesn’t know, i.e. model for him)
A                     “When it gets cold outside?”
C                     “No.”
A                     “When it gets dark?”
C                     “Yes!”
A                     “Yes, you turn on the lights when it gets dark. Great job!”

A                     “Why do you brush your teeth? Because the dog barked?”
C                     “No.”
A                     “Because you’re hungry?”
C                     “No.”
A                     “Because you need to clean your teeth.”
C                     “Yes!”
A                     “Yes, you brush your teeth because you need to clean them. Good job!”

Games like this will help your child connect “when” with a time or an event, “why” with a reason, etc. Use your imagination and have fun. Kids love it when their parents act silly. You can even pretend you don’t know the answer; when your child figures it out he’ll be thrilled.

Another word game you can play uses prepositions such as in, over, behind, under, after, and between. Here are a few examples:

When you are making the bed throw the blanket over your head and tell your child you are under the blanket. Take it off and say, “I’m not under the blanket.” Let him try, too. After all, that is the fun part! Have him help load the washing machine and say, “Put the socks in, put the pants in, etc. When the clothes are all washed and dried have him help take the clothes out: pants out, shirts out, socks out. On a nice day you can go for a walk and find things to walk around. Tell him you are walking around a tree, around a bush, around a rock, around a corner. When you are repeating things over and over, say them in an exaggerated or sing-song way to make it a little more fun. It might seem boring to you, but lots (lots) of repetition helps.

Model/Prompt
Always model for your child what he should say or do. This just means you show him exactly what you want him to say or do so he can imitate your words or actions. Some things may seem too basic to model, but remember that our kids don’t learn from watching as easily as do other kids. When in doubt, model. For example, if he takes you by the hand to lead you to the cookie jar, point to the cookies and say, “I want a cookie.” You can even shorten that response for kids who are more language challenged by pointing and saying, “Cookie, please” or “Want cookie” or even just “cookie.” You know your child’s capabilities; adjust how you model accordingly.

As he becomes more proficient with his skills you may only need to prompt him. For example, if he is indicating that he wants the cookie, point to the cookie jar and say, “I want…” If he doesn’t answer try it again and say, “I want….cookie.” Give him a couple of seconds before you say “cookie” so he knows you expect him to say something after hearing “I want…”. Some kids need more time to process to get a response out verbally; be patient. And, of course, be sure to reward him for any attempts, not just for successes.

Repetition, Repetition, RepetitionRepetition is important. Let me say it again: Repetition is important. Repetition helps the brain store information in your child’s rote (automatic) memory. Every time you put a hotdog on his plate say “hotdog.” After a few times you can show him the hotdog and ask, “What is this?” If he answers “hotdog” great! If not, repeat the question for him. If he tries to say “hotdog” but it comes out garbled, point to your mouth and slowly repeat the word with the correct pronunciation. Repetition can get boring pretty quickly for parents or teachers, but we need to remember that staying calm and patient with the process is key. Kids with autism needs lots more repetition than we might have previously thought. I repeat: lots more repetition. Some tasks take longer for a child, even though they might seem easier to us. Also, pay attention to signs of frustration or times when teaching may not be effective. If a child is already tired, hungry, frustrated or approaching sensory overload, it’s not a good time to work on language skills. If you’re getting frustrated, stop the task and return to it another time. Remember, working on these skills is supposed to be simple and fun – for both of you.

Watch What You SayYou can really confuse your child by using idioms such as, “I’ve got a green thumb” or “It’s raining cats and dogs.” Remember, kids on the spectrum are very literal. If you say you’re “tongue tied” he may actually try to look in your mouth to see this oddity. Adults in conversation with other adults often use such figures of speech. Once, after a conversation on the phone I hung up and said, “I almost stuck my foot in my mouth.” Brett was listening and said, “Mom, there’s no way you could ever get your foot in your mouth!” Although I am not suggesting that you completely change how you talk, just make sure you’re aware of what you say, and explain the idiom after you use it. Do use extra care, however, when giving instructions or comments directly to your child or student with autism. “Hop to it!” or “Do you have ants in your pants?” can result in some pretty interesting responses from your child if he or she doesn’t know what you mean.

Use Natural Settings
While language skills are important, we don’t want to spend all of our free time drilling them to the point of exhaustion. Quite the opposite, actually. Our kids get pushed all day long to stay on task, to focus, to listen. Sometimes just getting them to stay at school (never mind doing any work) is a feat in itself. By the time they get home from school or their behaviorist and OT leave for the day, our kids just want to hang out, relax and maybe even stim for awhile. Incorporate these language-boosting ideas into your daily routine in natural settings. Don’t drag him away from his video game to point out and name all the vegetables in your refrigerator. Wait until dinnertime to label foods and bedtime to ask him why we go to bed.

Working on these skills just a few times a day can really make a difference. A couple of years ago at the beginning of summer, I began to work with my son on “wh” and “how” questions, just two or three times a day for five to ten minute intervals. When he went back to school in the fall his teachers immediately recognized the difference in his language. At other times, it’s taken lots more repetition over a longer period of time to master new skills.

Teaching language is not always as cut and dried (pardon the idiom) as this article may seem to make it. But there is hope. While simple, these techniques are effective. Play with them, modify them to suit your child’s needs. Keep searching for the keys that unlock the doors of your child’s mind. Even with the right key some of those doors are slow to open, so give it some time and be patient. It’s definitely worth the wait for us, and for the child, language is the doorway to the world.
BIO
Karen Emigh is mother of two boys, and author of three wonderfully illustrated and colorful children’s books: Who Took My Shoe?, Herman’s Hiding Places: Discovering Up, In, Under and Behind, and Bookworm: Discovering Idioms, Sayings and Expressions (all published by Future Horizons).

The Life Unexpected - The One You Were Meant To Have Marianne Russo

2011-03-20T20:48:00.001-07:00

As little girls we played house and created a world with the perfect home, husband and child. Pretending to be a mom was a world with aprons, easy bake ovens, high heel shoes and pretty red lipstick. We knew this to be true, we saw it everywhere. It was on our televisions everyday. Donna Reed, Leave it to Beaver, Make room for Daddy even I love Lucy had moms with an idyllic charm that captured our imaginations.

As teenagers we rebelled. We were not going to be the idyllic housewife with pearls around our necks and children at our feet. We had new role models now. Mary Tyler Moore, Julia, That Girl and Charlies Angels transformed our beliefs. We dreamt of our careers and friendships and our lives as modern women.

As young ladies we became educated, got our first jobs, met the men of our dreams and felt the excitement and power of our first independence. We were empowered by the women on Cagney and Lacey, Knots Landing and Dynasty. The strength of these women changed our view of life and how we knew our life would be.

The men of our dreams became our husbands our partners our lovers. Maturity brought us to a balance of knowing that we could, if we chose, incorporate all the wonderful role models that had been set before us and have it all. We could wear that apron, advance in our careers, be strong formidable women, have that baby on our hip and do it all while wearing our best pair of stilettos. It was all laid out for us. It was the life we expected.

As woman and mothers we came to the stark realization that not unlike the fairy tales of our earliest memories, there are twists and turns and unexpected tribulations.

For some women life has given them pretty much what they expected. They seem to effortlessly walk through life and are truly content. For others, they are given the unexpected. They are given a child with a disability. They are given a heavy heart, not by the child, but by the illness or disorder that plagues them. These women feel limited in their choices, they feel they cannot have it all and feel a sense of loss for their happily ever after ending.

The woman of a child with a disability has been given the life unexpected.

Along with the unexpected can come the expected. If what we expected of ourselves as little girls, young ladies and women was to become nurturing, educated, independent, strong and supportive - then mothers of children with disabilities have not only met but far exceeded those expectations.

My father once told me "Expect nothing and you will never be disappointed". Seemed a bit harsh even a bit ridiculous. "Without expectations there are no goals" I replied. Looking back, I think I missed the point.

Perhaps the one thing never taught to be expected was to have a purpose. Maybe in some way having a true purpose in life - to be truly needed - may not be the life expected but the life you were meant to have.

Behavioral Plans for Children with Autism Mae Wilkinson

2011-03-19T16:48:00.001-07:00

Do you remember getting presents or special privileges for making good grades in school? If so, do you remember how proud you were when your hard work paid off? Me, too, which is why I was so excited when Connor’s teachers suggested we implement a behavioral incentive plan at school. And, since I am no stranger to incentive plans (considering I’ve spent most of my career working on points-based rewards programs for airlines, hotel chains. telecommunications firms and credit card companies), I was delighted that I could contribute to the discussion.

But school behavioral plans are quite different than any other incentive program I’ve ever encountered. Some examples I saw reminded me of what a warden would implement for prison inmates, not what loving parents and nurturing educators would develop for elementary school students. Fortunately, the school staff and I worked together, and we eventually came up with a program that has helped Connor make progress on a key goal of working more independently. Here are a few general rules that I would encourage all parents and educators apply when designing a behavioral plan:
- Remember that a behavioral plan is a rewardsprogram. Negative reinforcers are not helpful, whether they be frowny-faces, ’strikes,’ or lack of privileges. Progress reports should be private — placing ’scores’ on the student’s desk for all to see is a negative reinforcer. Rewards and communications should also be age-appropriate – happy faces may signal to a 4th grader that he is still being viewed as a kindergartner. A rewards program is, by definition, a positive reinforcement for performing a set of desired behaviors. Negative rewards create fear and shame.
- Ask the individual to participate in measuring his own performance. Another tenet of rewards programs is choice. Having a teacher looking over the student’s shoulder and judging him takes away his ability to provide feedback to himself, which is a key component of self-correction. After all, we choose to fly one airline over another to receive miles toward a free trip. The same is true for students – the child must be actively engaged in the program to make the conscious choice to behave one way over another.
- Do not ask the student to do what he cannot do. The requirements to earn a reward should be attainable, not impossible. The idea is to motivate incrementallybetter behavior. That doesn’t mean bribing the child to do what he already feels comfortable doing. Instead, the goals should be based upon improvements that may be challenging, but are still withinreach. Asking a student to complete double-digit division problems when he is still learning his multiplication tables is unreasonable. Be aware that a student may need extra training and accommodations to be able to make the necessary changes. Modeling the appropriate behavior (we used the Model Me Kids Model Me Organization and Motivation social skills training DVD), preferred seating and assistive technology are examples of enablers that can help the child do his or her best.
- Make sure the plan goals and rules are simple, clear, and match those as stated in the IEP. For example, executive functioning objectives, such as turning in homework, completing seatwork, checking work, etc., can be translated into a behavioral plan goal, such as ”complete each task assigned (or ask for help) per each school day period with fewer than two prompts.”
- Rewards should be immediate and allocated based upon the magnitude of change. It is no fun to do what you are supposed to do only to have to wait two weeks to receive your prize. So, daily rewards, such as receiving a favorite treat or privilege (e.g., computer time) can help maintain confidence while reaching toward some of the higher goals. For example, if Connor can go an entire day doing what he is supposed to do without prompts, he receives some small gift - ice cream, a cookie or a song download. This keeps him engaged in the plan, similar to the membership benefits adults receives from a frequent shopper program. But the first time he accomplishes something extremely difficult, he receives a HUGE prize, or at least hugely important to him. These milestone awards should correspond with the child’s interests; for example, a new Lego set, an MP3 player, tickets to a baseball game, or the least expensive, but probably most special thing in the world, a special outing with mom and/or dad. In the adult world, this would be reaching sufficient points to earn a free airline ticket.
Above all, respect the dignity and the effort of the students. They are working very hard to please you. A behavioral plan may be tracked at school, but must supported with rewards and encouragement at home.

Life Imitating Art or Vice Versa by Elise

2011-03-19T16:46:00.001-07:00

One of the things that I enjoy is watching my life unfold upon the television screen. Every week we watch the four geeks and the beautiful girl of The Big Bang Theory navigate their interesting relationships and lives. Invariably however, their issues and their sense of reality gets in the way of well…functioning on any level what so ever. Such an event took place yesterday between hubby and HSB.

As I have said before HSB earns cash/points that he can use against the purchase of video games and computer games by doing a variety of chores around the house. Now HSB has been keeping track of what he earns on his own and quite frankly I felt that he was doing a fairly good job. He did not lie about what he earned. He wrote down the proper amounts and subtracted when he spent money. There really wasn’t a problem until Friday.

HSB decided that he didn’t have the patience to do any laundry, but I was not supposed to do the laundry because that would take away form his projected income. However, I did make him take the laundry up the stairs from the laundryroom to the bedroom. He didn’t want to fold it or put the laundry away, which was part of the bargain. He basically decided though that he should get paid for bringing the laundry upstairs. I told him that that was only part of the chore and that he didn’t get paid for just schlepping things upstairs.

Well holy hell broke loose. He did not like that answer at all. I wouldn’t say a full-blown meltdown occurred but we definitely had the makings of a major tempter tantrum on our hands, complete with name-calling (he calling me names), foot stomping (when a 5’9” 200 pound 17 year old stomps his feet going up the stairs, the entire house shakes) and generally very poor behavior. So when hubby came home from work, in order to clarify what HSB gets paid for and when, he sat down with HSB and devised a plan how to categorize each step in the chore process. All of this was to be written down on a white board so there would be no arguments or misunderstandings in the future. (By the way if you think that tantrums are just the purview of autistic children watch this clip of Robin Williams discussing his 17-year-olds reaction to the word NO.)

Once these discussions began it is at this time that we entered an alternate universe. Not sure who the two of them were that morning, or which comedy show they were auditioning for, but if I could have filmed their interactions and sent it to the writers of BBT there would be a very funny skit about to be filmed in Hollywood.

Saturday morning, they sat together and wiped down the white board from HSB’s office and proceeded to create a chart that he could keep track of his earnings and expenditures. Easy right? Wrong. Arguing ensued, replete with verb tense battles, grammar innuendos and definition debates. They continued on for several hours arguing about:

*The configuration of the chart itself.

*How HSB wanted it to look, as opposed to how hubby needed it to look for his purposes.

*The steps that were to be written down. (Including each part to each individual step)

*How much each step was worth.

*How HSB was to keep track of each chore (lines with dates, number of chores done a particular date, whether he was to change the count by Arabic numeral or roman numeral counting - I kid you not).

*How HSB was to subtract when he used some money (whether he was to put the date in, the object purchased or just subtract).

*What each column stood for and the purpose of the chart in the first place.

*Why there has to be a total line at the end, when HSB only wants a total column.

*What color pen is to be used for which purpose.

I had to leave the room. I was getting a headache.

The problem was two fold I think. Hubby wanted the chart because he felt there was too much miscommunication about what is expected of HSB. HSB was happy with the chart he had and thought that I was just trying to change the rules on him and that I was a pain in the ass. No, he didn’t say that in so many words he actually used more colorful language when he didn’t think I could hear. Someone really needs to stress to autistic children that even if you are in another room when you yell, people in the rest of the house can still hear you.

Well eventually they did agree on a chart, its purpose, and even what color marker to use when and for what purpose. Yes, there was a protracted argument about green versus black markers and what HSB would use the green marker for. Of course green was for the amount of money he earned. Here it the finished product….

By the way, there is still a huge pile of laundry that I agreed not to touch, and we are quickly running out of clothes.

Until next time,

Elise

How one school district is drafting a policy against unlawful restraint and seclusion

2011-03-10T17:51:00.000-08:00

We’ve heard the horror stories – Practices of using restraints and seclusion (R&S) in schools have humiliated, physically harmed, or even caused the deaths of children. Yet many schools use R&S routinely as a method to get troublesome kids, even those as young as five years old, out of the classroom. Children on the autism spectrum are particularly vulnerable to this type of treatment. Because they do not display physical signs of their disabilities, they are often perceived as being non-compliant, lazy or just plain ‘difficult.’

For Missouri, the path to fixing the problem started with one courageous mom’s outrage against the treatment of her young son. Her story caught the attention of the media, and soon other families soon came forward and began sharing their experiences. (See testimonies from the GAO on Restraint & Seclusion at http://www.gao.gov/new.items/d09719t.pdf and more at   http://nomoseclusion.blogspot.com). Not long after that, the issue was brought to the Missouri Congress. Legislators listened, and a bill was passed in 2010 mandating public schools to develop rules against unlawful restraint and seclusion. (The Act: http://www.moga.mo.gov/statutes/c100-199/1600000263.htm ).
But there was a big gap between mandating a policy and developing one. Some parents wanted restraints and seclusion banned under all circumstances. Other parents insisted that some R&S practices should stay in place, because they were terrified that their children would hurt themselves or others.  School districts were concerned that eliminating restraints and ‘time out’ rooms would disrupt class routines and upset and/or endanger other students when a child acted out.
So, a committee was formed to draft the state’s Department of Elementary and Secondary Education’s rules and guidelines, beginning with definitions: What is restraint? What are acceptable/non-acceptable forms of restraint? There are a number of ways schools had restrained children in the past - medically (drugs), physically and mechanically. Drugs were not allowed to be administered. Prone and face-down restraints were particularly singled out as harmful, and were banned. Mechanical restraints were defined as anything using straps, including clothing (one school practiced strapping children to their chairs by putting their coats on backward and zipping them up behind the backs of their chair), and were also controlled. The situations where restraint and seclusion could be used also needed to be defined. What constitutes an emergency situation and how long could seclusion be used? For example, under the new policy, seclusion could not last longer than the time it took for the police to arrive. Parents had to agree in writing to the use of any R&S in the IEP.
Then, the policy had to be adopted by each school district, and districts were called upon to develop their own guidelines based upon what the state had developed. In our area, The St. Louis Special School District (SSD),  is one of the few separatespecial education school districts in the nation. Our local districts contract SSD to provide services, so SSD is also one of the largest special education providers in the US, providing services to over 25,000 students.   Thus, a new committee of educators and parents was formed to develop district policy.
Some of the proposed policy elements were unanimously accepted; for others, the district wouldn’t budge. Accountability, for one.  What are the consequences of an educator not following policy?There would be no separate accountability other than the district’s own code of conduct and performance standards. What about prevention? Again, the district believed that the preventative measures via behavioral interventions were sufficient to stop most disruption from escalating to the point where restraint and seclusion would be necessary. (BTW, I don’t agree with either of these. Violators should be punished, and we have a loooooong way to go before we eliminate years and years of repeated failure that causes some children’s behavior to escalate into violence.)
At last, a draft was formed and is waiting feedback from the community. It is far from perfect, but it is a good start. The draft: http://www.ssdmo.org/about_us/news_releases/SSD%20Website%201.25.11%20JGGA%20.pdf
To hear more about the path to policy,  please join me on TheCoffeeKlatch tonight, (Sunday, Feb 20) at 9pm est/8csst on Blog Talk Radio with my guest Douglas Riggs, the Chairperson for the Missouri Planning Council for Developmental Disabilities Policy Committee. Doug is the father of a child with an intellectual disability and a committee member for the St. Louis School District’s Restraint and Seclusion task force. http://alturl.com/2c7b

Mae Wilkinson

Michelle Obama response to my request for guest appearance to discuss childhood obesity

2011-03-10T09:12:00.001-08:00

from	The White House - Presidential Correspondence <noreply-WHPC@whitehouse.gov>
to		thecoffeeklatch@gmail.com
subject		Thank you for your message
mailed-by		whitehouse.gov

hide details 6/28/10

Dear Marianne Russo:

Thank you for writing to me about your interest in
helping to solve the childhood obesity epidemic. Children
all across this country are afflicted by poor health and a
lack of nutrition in increasingly devastating numbers.
Childhood obesity rates in America have tripled over the
past three decades, and for the first time in our Nation's
history, the current generation may be on track to have a
shorter lifespan than their parents. These trends are
startling, but I am encouraged because I know that
individuals and organizations are already hard at work to
combat this issue.

And we want to do our part as well. We recently
launched the Let's Move! campaign with an ambitious
national goal of solving the challenge of childhood obesity
within a generation so that children born today will reach
adulthood at a healthy weight. Let's Move! will engage
every sector impacting the health of children to achieve the
national goal, and will provide schools, families and
communities simple tools to help kids be more active, eat
better, and get healthy. This initiative is comprehensive,
collaborative, and community-oriented, and it will
specifically address the various factors that lead to
childhood obesity by helping parents make healthier
choices for their families, providing healthier food in
schools, increasing physical activity, and increasing access
to affordable food in all communities.

We are going to need everyone working together to
achieve our goal, and so I urge you to join us online at
www.LetsMove.gov, where you can stay updated on news
and connect with our efforts. Our strength as a Nation and
our ability to responsibly shape our future depends upon
tackling this issue, and I hope you stay active in the fight
against obesity in your home community. We need your
ideas, your hands, and your heart to lead us to a brighter,
healthier tomorrow.

Thank you again for writing. I wish you all the
best.

Sincerely,

Michelle Obama

Super Bowl Loss by Chuck Walley

2011-02-27T09:19:00.001-08:00

Super Bowl Loss

I’m a Steeler fan and as such, I’m bummed. My son, The Bean, over the years became a HUGE Steeler fan. Tonight was very tough for him. As he sat through the game, each Packer touchdown and each Steeler turnover brought him closer and closer to a 7.9 Richter scale meltdown.

Losing is a big problem for The Bean. His high school football team won its first eight games, before dropping three ugly turds at the end of the season. Those last three games weren’t close – they weren’t even on the same planet. And through them, The Bean exhibited meltdowns of horrific proportions. These were “I hope the referee doesn’t throw a penalty on The Bean” types of instances, where The Bean was certainly “using his words” but not very wisely. (“Where did he learn to talk like that? Oh, never mind…”)

Before the Super Bowl started, The Bean was as ready and was as high as a kite. His Steeler cap was on, the Terrible Towel in hand, and he was planning his victory celebration. Throughout the day, as I was trying to prepare him for a loss, he continually assured me he had everything under control.

As the first quarter ended, the Pack was up 14 – 0 and The Bean was in a complete nose-dive. We talked him into a chair where he sat and rooted for a comeback. More Steeler tragedy ensued and the spiral, momentarily on pause, was underway again.

This happened throughout the game – up and down. The game came down to the last two minutes, where the Steelers had to put a 90-yard drive together, or go home as runners up. At this moment, I got The Beans attention and told him “This is your Super Bowl – right here, right now. Not what happens on the TV screen, but what happens in your chair.” The Steelers’ drive didn’t hold and they lost the game.

The Bean… he held. He took the challenge and he pulled himself together. “The Packers played a great game.” For those in the room, it wasn’t fun listening to the drama throughout the night, but at the end, he held it together.

We made progress tonight. Tomorrow, who knows. Tonight, however, while the Steelers lost, The Bean got a win.

The Diagnosis - Digging Out Of The Trenches Marianne Russo

2011-02-17T14:53:00.000-08:00

Receiving a diagnosis is often times both a devastation and a relief for parents. The devastation comes in the form of a reality no parent wants to experience. That kick in the stomach and feeling of panic that can shake you to the core. The relief comes in the form of confirmation, confirmation that what you had suspected is in fact now a “label” or diagnosis and affirms your self doubt. Parents know when something is not right and having a diagnosis can give the parent much needed direction and focus. Getting to that first diagnosis is sometimes a journey in itself. There is often insecurity, confusion and differences of professional opinion. Go with your gut, even first time parents know when something is amiss. If you feel your child is not being evaluated properly it is your right as the parent to ask for further consultations. On the other hand, there are times when the parents are not aware of developmental delays or behavioral red flags which is why parents need to be approachable if teachers, pediatricians or experienced adults suggest there may be a problem. Putting off an evaluation or that discussion with your pediatrician is a mistake. All the current data shows that early intervention is key to successful treatment.

The journey of a special needs parent is not an easy one. There are lots of twists and turns and unraveling to be done. It takes time, sometimes years of adjusting and refocusing your direction of treatment and choice of medical professionals. Keep in mind that often with young children the diagnosis may change as time goes on and many disorders are complicated with comorbidity or wax and wane adding to the confusion. The first months and years are, I think, the most difficult and parents need to start constructing a lifestyle that will allow them the much needed time to research, become educated and seek the best opinions and treatments available for their child. Isolation is another concern for newly diagnosed special needs parents as the world suddenly seems overwhelming and foreign to them. Finding support and a friendly ear is very important.

Parents are at times at odds about receiving or accepting a diagnosis. Parents who are not on the same page struggle. Marriages are affected, siblings are affected and the special needs child becomes the center of controversy. Being on the same page is very important. There will be important decisions to be made, medication decisions, traditional or alternative approaches, choices of physicians to be on your medical team and many others. The primary care giver needs support. Both parents need to understand the stress the disorder puts on the other and offer empathy. Even the strongest of people at times need help coping and sorting out their emotions. Getting therapy for yourself or your marriage is not a sign of weakness, it is a sign of understanding the gravity of the situation and building a united – solid foundation. Single parents have my heart. Single parenting a special needs child is one of the hardest jobs on earth. Finding support through family, friends and community resources is vital.

Accepting the diagnosis is one thing, accepting the life it brings is completely different. I call it the Life Unexpected. I think accepting “truly accepting” the life you will now have is key to progress and success. Of course we want to fix our children, we want to cure our children we want to make them whole and take away their emotional and physical pain but often times that is just not possible. Despite our best efforts, we cannot fix them, we cannot cure them. The best many of us can do is manage, treat, teach skills and accept not only the diagnosis but the effect the diagnosis will have on all our children, our marriage, our child’s education, our friends and family members and most of all our expectations of what our lives would be.

A diagnosis of autism or mental illness is devastating and of course different levels of impairment bring very different challenges but, it is what you have been given. It is up to you to take the unexpected and move forward –not just move forward - surge forward. You need to find that determination to do what you have to do. You need to go through many stages to get to your resolve. This determination is not just for your special needs child but for your whole family. The domino affect of an unstable situation can take hold quickly. Will you make mistakes, absolutely, sometimes big mistakes, I have, but you will keep going. You will forgive yourself, know you are doing the best you can and move on never giving up hope.

To accept the “label” or diagnosis your child is given is often the easy part. Accepting that your life will be different, that your priorities will be different, that YOU are now different and knowing it will be alright – that is acceptance. Why is acceptance so important? Because this is a life long journey – the sooner you truly accept it, the easier the trip.

I think that one of the most important aspects of acceptance is sense of self you project on the child. I think it sends a strong message to the child when we are always looking for that cure or that fix that they are defective. Many children report feeling defective and shame. Feeling defective is one of the most reported feelings among special needs children and adults when discussing their childhood. Parents need to be careful to not add to that. Taking your child from doctor to doctor and therapy to therapy sends a message. Unfortunately, I think it is unavoidable but attention needs to be taken. Am I saying to not seek the best possible treatments? Absolutely not. Am I saying to limit therapies that are helping - Absolutely not. I think parents should never never never give up – keep digging – keep searching – keep researching – being persistant and sometimes going with your instincts pay off and pay off big time. But choose your words carefully around your child as to not add to their feeling damaged – that is a heavy load for a child to carry. My experience has been that discussing the child’s positives can outweigh the negatives they are feeling so make sure that your child knows they are great – great at anything – great at something – great in your eyes.

Being a special needs parent is not for sissy’s. This is no time to be intimidated or shy. You are your childs best advocate – you make the final medication and treatment decisions – you know your child – you observe improvements and regressions. You can interview pediatric or specialty practices to find the right fit – we did - you need to take control – research and become educated.

If I had to say the number one thing for any newly diagnosed parent to do it is this - JOURNAL JOURNAL JOURNAL it is an absolute must. You are now your childs medical historian, the keeper of all records and observations that you will need, and often forget during chaotic times, to report to your medical team. Even a spiral notebook with a daily one or two sentence writing about what you are seeing will do.

As I’ve written previously as in the case of anxiety and depressive disorders – ‘Mental illness its not all in your head” sometimes, not always but sometimes, there is an organic basis for anxiety disorders in children and adolescents and turning no stone unturned can open the door to “out of the box” thinking that can bring effective treatments. Doing so can lead you to many different specialists neurologists, developmental pediatricians, cardiologists even endocrinologists (who I feel are key for females w anxiety disorders and other signs of endocrine disease) and a full blood panel work up should be done before any medications or treatments are started. It is a lot of work, a lot of pressure but when it pays off, it really pays off. Putting together a team that will work together for your child will make all the difference in the world.

Understanding how a diagnosis of Autism or Mental Illness is derived is important for parents to understand as well. The DSM right now is not a friend of parents with children with mental illness in my opinion. Sensory issues are not criteria for autism which is a major omission – adult criteria is used for children with bipolar disorder when most children and teens do not present with clear episodes of mania and depression as do adults but are more chronic in nature with agitation, temper tantrums, rigidity and low frustration tolerance making the DSM criteria useless in diagnosing the majority of children with this mood disorder and temper disregulation. For the majority of kids true bipolar disorder is very rare. The updated DSM-V is under revision with much debate about Autism and Bipolar disorders and the possible addition of TDD Temper Dysregulation Disorder with Dysphoriawhich I personally do not want to see. I think it has a very negativeconnotation and will add to the stigma. I do agree that additional diagnosis need to be added to account for this large population of children with mood and chronic agitation and hope that new gains being made in research are considered in the added criteria and labels. In the end the DSM is needed for medical insurance coding and for diagnosis for school accommodations, which by the way is very important, but as far as treatment, I think it is not a useful tool. Parents need to treat the symptoms not the diagnosis. A child with a diagnosis of ADHD that rages using stimulants should not be treated with stimulants because it is the drug approved for ADHD as an example. The DSM is used to classify and diagnose mental illness but is antiquated and will be getting a revised edition in 2012. A little DSM history – the first DSM was published in 1953 with only 66 disorders, 1968 second edition with 100 disorders, 1979 totally revamped with multi axial system of coding and upgrades, 1994 was the last revision with 400 disorders. It is long overdue and greatly anticipated. I am doing some very important interviews on my Blog Talk Radio show for The Coffee Klatch to make sure parents are aware of the significance and changes proposed.

So how do we get there? How do we dig out of the trenches? How do we get to that diagnosis and the acceptance of it? Stages vary among all parents but the isolation – anger – resentment - sadness even guilt seems to be universal. Everyone will experience it differently but I think parents need to feel it – it is painful to see your child suffer – it is important to acknowledge that pain for your child and for yourself. Often people comment on how myself and other moderators on The Coffee Klatch are so confident and strong. Guess what – we didn’t start this way – it was a process – it was done in stages – we have all been there, we have all dug out – some days it seems we are still digging.

So have your pity party – have a good cry – You deserve it - then pick yourself up and brush yourself off – you have a lot of work to do. As difficult as this journey is – in the end you will know unconditional love and the true meaning of a purpose in life that most could never imagine. This experience will change you – it is up to you whether it changes you for the better.

I wish you much luck, strength and calm.

Autism policy – How should we advise our state legislators? by Mae

2011-02-14T08:52:00.000-08:00

We are excited to participate in a pilot program sponsored by our local Arc chapter where we will be hosting a small group of parents, self-advocates and local legislators. The purpose of the meeting is to share our experiences and feedback about what’s working or not working with current policies and practices related to autism and other disabilities. I’m certain the stories will be compelling, heart-wrenching and inspiring, as in the case of one friend who was placed in a state-run hab center for years but is now *finally* living happily on his own.

But I know that at some point, one of the legislators will turn to me and say “Well, then, you’ve made your case for change. What can we do to help?”

I’m not sure if I am ready to answer the question. I do have some ideas, but I could use your help in taking these suggestions to a higher and more polished level. Here’s a start:

Employment. I would like to see individuals with autism/disabilities have more opportunities for gainful employment. Sheltered workshops, though well-intentioned, are not the answer. If you don’t believe our kids are capable of having a true vocation, read Real Jobs for Real People, published by the Missouri Council for Developmental Disabilities. You can also check out the Danish company Specialisterne, which has received high praise for hiring autistic individuals (and their incredible attention to detail) to test new software. There are tax credits available to employers, but I think we need to take it a step further by cultivating a perception in our business communities that people with developmental disabilities are a willing, eager and valuable talent pool.

Housing. Okay, I admit it. I hate hab centers. Despite 11 years after the Olmstead Act (which states that people deserve the chance to live in the community), Missouri is one of 11 states which still places has individuals with disabilities in state-run institutions. Part of the problem is that there is very little affordable housing, so those that are in an institution have no other place to go.

Fortunately, there is an excellent program called Money Follows the Person, which enables the individual to have more choice over his/her living arrangements. The way it works is that coordinators help the person to find a good place to live - whether it involves sharing an apartment with a roommate, finding a caregiver family or renting/buying a place on his own. Then, checks and balances are built into a person-centered plan to ensure that needed services and funding for those services will continue. Another beautiful thing about Money Follows the Person is that it grants a small amount (about $2500 per person) of one-time funds to help the transition. Sometimes the money is used for something as simple as a smaller wheelchair that will allow the person to move through smaller doorways in the new home or for assistive technology. I would like to see more of these programs put in place for adults with disabilities to transition not only from hab centers, but also from group homes, to more independent living.

Education.It irritates me that the measure of success for many special education schools and therapists is to ‘mainstream the children in a public school.’ What’s up with that? My son has been mainstreamed since a moms-day-out program and nursery school. I want the measure of my son’s educational success to be 1) getting into college and 2) being prepared for the career of his choosing. Pu-lease. And don’t even think about dumping him into vo-tech in high school, either. I don’t mind if he takes a few community college courses for enrichment and career training, but I don’t want to stop him from having the opportunity to take the same high-school courses as anyone else.

I would also like to encourage educators to balance ’catching-up’ efforts with nurturing a student’s strengths. My child may find reading challenging, but he’s an expert in social studies and science. Why should he have to play to his lowest common denominator?

Finally, I think some sort of voucher program for private schools and tutoring would be very helpful. We need to teach educators that our children are capable of learning, but they might need to be taught differently. And yes, we understand that teachers already have ‘way too much to do, so the vouchers would allow us to supplement our children’s education without putting more on their plates.

Parent Support. We need all the help we can get! Remember, ours is the first generation that wasn’t routinely enocouraged to place children with autism into institutions. We don’t know what we are doing half of the time. We are writing the handbook, so please, please…keep funding the Parents as Teachers program, parent-to-parent mentor programs and in-home parent training. And while you are at it, Mr/Ms Legislator, please support the continuation of those supports until our children are 30…well, okay, at least 21.

Health Care. We’re lucky – we have what most people would consider to be great insurance. We can get free office visits, free antibiotics, free teeth-cleaning, free emergency room visits, but we can’t get free language therapy for our son. The new Missouri autism insurance reform bill should help *we think,* but we’d like to see therapy coverage for adults after the age of 18. After all, a person is never too old to learn, and some of our kids simply aren’t ready to develop certain skills until they are well past their teens. I have a dear friend who has had difficulty with reading her entire life just start to sail through hefty chapter books at age 22!

Ending the Wait List. Why is it that the money being spent on social programs isn’t hitting the right places? It is similar to the aid programs that was granted to third world countries in the late 60s/early 70s – much of the money went into a dictator’s pocket! (there’s an analogy to polish up, if you would be so kind). In other words, the money is flowing, but there are still too many people on wait lists for housing and services. Sometimes, I think that the people who benefit the most are the sheltered workshop owners, the hab center workers and other administrators of “Disability, Incorporated,” while those in the trenches are underpaid and overworked. Re-engineering or right-sizing may sound like harsh terms, but I bet that if we streamline the current convoluted processes and paperwork, then we may be able to generate enough savings to help put those monies in the hands of the families that need them the most.

Of Groundhogs, Snowstorms and Planning for the Future

2011-02-02T08:53:00.001-08:00

So as I sit here at my desk and stare out the window looking at the sixth major snow storm that we have had since Christmas, I have to say that that darn groundhog better not see his damn shadow tomorrow. I can’t tell you how tired I am of snow, ice, sleet, cold and a generally feeling of blah. I am sure it has something to do with seasonal affective disorder, so I take my vitamin D pills and try to exercise several times a week. But what I really need quite frankly is for it to be April. You see February is brutal here and March can be kind of iffy so I look forward to April because once the forsythia starts to bloom, there is that ray of sunshine and hope for warmer weather. Listen, it’s not that I don’t know what a really cold winter happens to be. I was born and raised in this neck of the woods, but this year is ridiculous. It’s not just winter, it is WINTER…I have officially decided to rename where I live The East Coast Tundra of the United States. The snowdrifts are so high they reach up to your butt and the dogs disappear into them. Of course the dogs are happy rolling around in the snow. Listen, the Wheaton is eleven so I am chalking his antics up to a form of old age dementia and as far as the Labradoodle is concerned, he is just plain batshitcrazy, but in an adorable, very loveable sort of way.

So here I sit, kvetching my spoiled heart out to those that will listen and as they say blogging is cathartic, so I am really beginning to feel better. Getting this out has really started to help with my overall disposition. Of course, I just heard that another storm is rolling in tomorrow and instead of snow we are getting a major ice storm…oh goodie goodie goodie. Possibly up to half an inch. If you don’t hear from me for awhile, its because the electric decided to take a staycation.

The truth is that sitting here watching the beef stew cook; I have been contemplating the next adventure to start in our life, HSB’s entrance into college. Interestingly just the other day hubby, that Wise Old Sage, reminded me of some things that he feels is important that families with younger children need to actually pay attention to as their children get older. He told me that whenever he meets a parent with a young child on the autism spectrum these are the things he wants them to be aware of:

1) Trust your instinct. If things are not right, they are not right. Whether at school, or just in general.

2) Don’t listen when the school tells you how great they are doing socially, academically or emotionally. Watch what is really going on, don’t just take their word for it. Children make improvements sure, but are they really improvements that would allow them to be independent when that yellow bus stops coming to your door. The schools also provide terrific support, but their job is to only make sure that your child gets through school. Listen a lot of them are wonderful people, the boys would not have made it without so many of them and their incredible hard work, but once your child walks out that door, the school has no obligation to your child anymore and their attention is about the next child they need to get through 12^th grade. The next step is all up to you and you alone.

3) Have a plan in place for when the children are adults. Make sure years before that you know what is out there for them and how to go about accessing the system. Make sure what information you have to have at the ready and how long it takes to get registered. Don’t assume that you can walk into a social services agency the day after graduation and everything will be set. I know people who years after graduation are still trying to get their children into programs and get the state support that they need.

4) Remember that each step and growth and development is a major transition, just because they could function in their little classroom or in the school doesn’t mean that they will be good on their own in their next environment. Prepare.

5) Research independent of all the experts what your children can do with themselves once they are either 18 or 21(this depends on your state's age of majority). Find out about employment, educational programs and opportunities in your area or state for those with disabilities. Find out about training and vocational programs as well as post secondary college (community or 4-year). Find out the supports available in these programs and what is and is not allowed. There may be some basic concepts for post secondary education but each post secondary program can make up their own accessibility rules and what they will and will not permit.

6) Do not count on social security or Medicaid either. Whether these social programs will be here in the future or not is not the issue, what is the problem is that just because you feel your child is disabled enough for government support doesn’t mean the government will provide them with adult support (standards are very different when dealing with the government on an adult level). So prepare that they will receive no help and be glad if they get some backing.

7) Get a good estate attorney who knows about special needs trusts, even trusts in general and wills. Find out about becoming an adult child’ s guardian and making sure that all papers (living wills, healthcare proxies, etc.) are signed when they come of age. Just because you think you can tell the doctors what to do with your child when they are 18 or older doesn’t mean the doctors have to tell you anything or even listen to you at all. Heck the college wouldn’t event talk to us if collegeman hadn’t signed a piece of paper saying that they could, even though they know that he has aspergers.

8) And most of all, this is something the Wise Old Sage finds so very important; stash as much money away as you can. I know it’s hard when you are also spending a fortune on therapies as they are young, but see if you can do it. It is money that will help your child when they are adults, whether its hiring classroom coaches, life skills coaches, more therapists and support personnel. Don’t expect the state or anyone else to do this for you. As expensive as it is when they are younger we had no idea how this was going to set us into a whirlwind. Hubby turns to me all the time, and says, we should have been smarter. We thought everything was gong to be fine by the time they were 18. Who would have thought that things would have gotten harder financial, OK the recent financial meltdown didn’t help to say the least. But we thought we had all the time in the world, yet you really don’t. It is so unreal that in so many ways the boys actually need more supports as adults than they did when they were little and so much more disabled. Or quite frankly so much more of the support, in fact all of it, is on our backs.

So when we started out on our journey oh so many years ago, it never would have dawned on us that over 15 years later, we would still be fighting and learning and doing. We had no idea what the future truly was going to be and we had no idea how much we should have prepared. So I tell you to prepare, make sure that you have those ducks in a row.

In just a few months my baby graduates from high school. There will be no more support from the state for him anymore than there is support for collegeman. Yes, the college is wonderful. They allow any supports that the boys need. But it is all financially on us. If we couldn’t afford the classroom coaches, neither boy could go to school. They can’t handle it on their own and the school cannot handle their issues, and quite frankly they are not legally bound to. I don’t blame the school for not being able to handle the boys’ issues. You must understand your own child’s neediness and work with the school so your child can learn, grow and be a viable member of post secondary education, while not inhibiting someone else’s education as well. College is different. And as we are finding out law school, heck the damn law boards alone, are an eye opener into more of the “real” world for the boys. Just something else to have to prepare for. Also don’t assume that the fights will be over by the time your child gets to adulthood 15 years from now. Some of the issues we are experiencing for collegeman especially have been going on for decades and remain unresolved.

So here I am once again thinking about stress and obligations and making myself maudlin. Shouldn’t really. There are a lot of new adventures to come and quite frankly things are looking up. A lot of good things are happening right now. It is one of those rare moments in time where everyone is happy and healthy. I am going to blame seasonal affective disorder. Honestly, if that darn Punxsutawney Phil sees his shadow tomorrow I am going to make myself some groundhog stew.

Until next time,

Elise

Just Eat The Donut by Hartley Steiner

2011-02-02T08:47:00.001-08:00

"You haven't lived until you've dissected a doughnut."

Several weeks ago, I posted that as my Facebook status, and got a few puzzled comments. Most of my friends could not understand what I was talking about.

But you, my fellow parents of children with sensory issues, you understand. Don't you?

My son is an incredibly picky eater. In order for him to eat a plain doughnut, we have to remove the "brown" off the outside of it, so just the inside white part is exposed. This stems from the fact that over a year ago, he gagged on a plain doughnut, and the sensory memory of that has stayed with him ever since. So for him to be able to eat it, he has to have the outside surgically removed. Never mind the fact that he's able to eat a plain munchkin no problem. The memory is from the doughnut, and can't be changed, reasoned with, or explained.

So, you ask, why even bother giving him the doughnut in the first place? Give him a different kind. Or none at all.

Because my son isn't just a picky eater. He's a picky eater with SPD and autism, who also happens to have an intolerance to all corn products.

That's right. His diet, already limited by his sensory disorder, is that much smaller because he can't digest anything with corn. That means no corn starch, no corn syrup, no modified food starch, no dextrose, no maltodextrin, and of course, no high fructose corn syrup.

I'll give you a moment to go check your pantry and see how many foods have some corn product in them. I'll name a few kid-friendly ones: Cheerios, Rice Krispies, several brands of peanut butter, breads, jellies, crackers, chicken nuggets, hot dogs, bologna, deli meats, yogurts...and we haven't even left the house. Forget about fast food or eating out most places.

So that's why we indulge him with the doughnut. Because that plain doughnut from Dunkin' Donuts is the only thing there that he can eat. And if his brothers are getting a treat from there, we like to make sure he can have something special too.

As you can imagine, getting food (and calories) into him is a challenge and always has been. He's had this intolerance since he was born, and has barely stayed on the growth charts these past four years. We've worked with occupational therapists when he was younger to help with his gag reflex to certain textures, and have had some success in that area. But his memory is long for such a young guy. Foods that he has thrown up in the past never make it back into the food rotation - strawberries, french fries, soft fruit bars, and of course, the outside of that doughnut. We've had nutritionists suggest adding olive oil to his yogurt smoothies for more calories, but we're afraid to alter the one thing we know he'll drink.

All of this makes meal times very difficult. The SPD, the autism, and the food intolerance add up to some very interesting dinner adventures. My oldest bolts from the table whenever he sees his brother start to gag. One night, my son will eat an entire grilled cheese sandwich. The next week, served the exact same thing, he'll take one bite and walk away. Or maybe not even a bite at all because he doesn't like the way it smells. All his senses come to the table with him when he eats. And no amount of prodding, begging, encouraging or yelling will get him to eat something that he has decided is not okay for consumption at that moment.

We've been dealing with this for enough years now that for the most part we just accept it. Like every other challenge that comes with SPD, we try to anticipate what could happen and plan accordingly. If we're going to a friend's house, I warn them ahead of time that he might not eat anything to make sure they won't be offended. We bring our food for him to restaurants and pizza parties so we don't have to worry about the ingredients in every dish. We've brought our own cupcakes to birthday parties and always have a stash of goldfish and corn-free pretzel sticks handy just in case.

I will admit there are moments when I just lose it at the dinner table. Maybe it's the night that I've worked incredibly hard on a new recipe and my son won't even touch it because it doesn't look right. Or maybe it's the night that I've ordered the same pizza that he always eats from the one corn-free pizza place in town, and he decides he doesn't like it anymore. On those nights - the ones when he ends up with a yogurt and crackers for dinner - those are the hardest nights for me as a parent. I leave the table feeling like I've failed at one of the most important things I'm supposed to do: feed my child.

I'm hoping that at some point, he'll outgrow both the corn intolerance and the sensory issues surrounding food in general. Until then, we'll continue to dissect the doughnuts. Because while some may call it overindulgence, we call it a way to get through the day.

"Just eat it, eat it , eat it
Get yourself an egg and beat it
Have some more chicken, have some more pie
It doesn't matter , it's broiled or fried
Just eat it, eat it, eat it, eat it
eat it, eat it, eat it, eat it, ooh" - Eat It by Weird Al Yankovic

Raising a Confidant, Capable, Contented Child ~ Lorna d'entremont

2011-02-02T08:43:00.000-08:00

Part 1

Molding of a child’s self worth starts in his formative years where the parents are the major role players. The parent’s positive reinforcements will determine how a child feels about himself and the others around him.

Being your child’s selective cheerleader will help him have faith in his abilities and be eager to tackle new risks. Being overboard and cheering 24/7 will result in an arrogant or conceited individual that not many people will like.

How Do Parents Achieve a Happy Balance Between Praise and Helpful Criticism

Remember there are no set moulds that fit every child. Each child is unique and your parenting techniques have to be adjusted for your situation. But giving your child feedback, both praise and helpful criticism, is necessary for your youngster. Praise will let him know he is on the right track. Helpful criticism will get him back on track, and if well done, will give him tips to avoid similar pitfalls and to apply to other disappointments or failures.

The golden rule in building self worth in a child is to start early and to always be truthful. Any event during childhood is a great opportunity to start boosting your child’s view of himself. You want the youngster to feel proud and pleased with himself not just to feel he pleased his parents. However, only give praise when it is warranted. The praise must be sincere because in his heart he will know if he has earned it.

When celebrating an achievement, praise the positive steps, the preparation, the persistence on your child’s part that made this a success. By pointing these out, it arms him with tools for the sub conscience for getting the next project done right.

Be selective and truthful with your praise as well as with your criticism. You must applaud your child’s efforts and improvements but be realistic. This constant pouring of praise can backfire and result in a spoiled, awful child who has no regard for others nor their feelings. At all times, strive for a healthy balance between praise, helpful criticism and knowing when to let it go.

How to Build Self Confidence

To tip the balance in your child’s favor, plan activities in an area you know your child is good. His skill in this activity will give you the opportunity to praise him and a feeling of accomplishment on his part. Age-appropriate responsibilities around the house will also provide opportunities to experience success.

Look constantly to give positive affirmation of his qualities, attempts and achievements. Making your child feel loved and lovable paves the way to better relationships and success at school.

Part 2

When your child starts going to school, this is the first step in the big, bad world where you have a lot less control and where you must trust others to continue the work you started at home. Have you done enough? Is your child ready? What is your role now?

What Happens When Your Child Goes to School

Hopefully his teachers will constantly be trying to do the same thing as you have. And that is to nurture a self-advocating, confident, little person who acts independently and gladly accepts new challenges. A hint to his teacher about his interests and skill in certain areas will help the teacher know how to shine the light on your child to let him experience success to build his self worth.

Raising children with high self-esteem must be done as team work with the school. First, all must know your child’s weaknesses and his strengths so efficient intervention is arranged. Work with his teacher and know what both you and the school expect of this little soul under your care. Know what his potential is and work with that. Genuine appreciation for his efforts as well as his results will go a long way in the overall happiness and success of your child.

Can the Bar Be Too High

Do not compare his results with his peers, with his siblings and even with his progress in other areas. He is his own man, strengths and weaknesses. I have seen too often, sullen, listless children in my classrooms who have completely given up trying because they feel nothing they do will be good enough for their parents who have set the bar too high.

A friend told me she believes in providing Step Stools instead of lowering the bar. Her step stools would include new paths, remedial help, counseling, after school and summer holiday tutors.

These measures are all good and sometimes essential but the goals must remain realistic. I am talking of students as young as 8 or 9 years of age with no spark left, just despair as they think of the new, promised toy they will never get as a reward for better results.

What About Gifts for Achievement

What about gift giving as a carrot to get your child to strive for higher grades? Once more, focus on a reachable goal, one that is fun for the child, facilitated by the parents’ involvement and an attainable outcome for his teachers.

Celebrate small steps, reward daily effort and progress and do not wait for the big ending or there will never be one. Many special needs parents have coined a new word ‘inchstone’. They rejoice with each inchstone their child makes while lucky others can celebrate milestones.

Parents, Be Proactive and Present

This is not rocket science. Parents must interact with that little being every day. Formulate your questions about his day so a verbal sentence with emotions and thought is required as an answer. Know what your child finds difficult and figure out a way with him and his teacher to remedy the problem before it escalates. Know what he finds fun and can do well and celebrate minor achievements.

Be proactive to catch problems as soon as they arise. Moreover, every school day, parents should check what is in their child’s school bag. This gives another occasion to discuss his day as you go over what he brought home.

We had friends from Switzerland who were paying us a visit. One day, when our young son arrived from school, he emptied his school bag on the table, like he always did, and I casually picked up a few drawings, made some comments and asked him a few questions all in French, the language of our home. Our Swiss, German speaking visitor came in the kitchen and said pointing to the opened school bag: “Parents in all countries, in all languages do the same things each day.” Taking a these few minutes each day can make your child's whole day at school much better.

Why Checking School Bags Is Important

I remember having worked long and hard on individual projects with my Grade 3 students. The students all had accomplished so much and were all excited to show them to their parents. The many hours of research, writing, editing, illustrating and coloring finished, the projects were safely put in envelopes addressed to their parents and tucked in the school bags.

The bell rings and my happy troupe trots of to the buses. Cleaning up after school, I found one of the projects crushed and dumped in the trash can. The next day, after a troubling, sleepless night, I discreetly sneaked a conversation with this child to know why he did not bring his project home. Answer: “I might as well dump it in the garbage here, my parents empty my bag into our home garbage without looking at anything!”

At 9 years of age, this little boy had loss the race even before leaving the stating gate… in University did I learn how to mend broken hearts and broken spirits?

Collaboration, Cheerleading and Caring will render your children, Special Needs or not, well adjusted, independent, resilient citizens of tomorrow.

Personal Reason To Rejoice About New Study On Tourette Syndrome by Pierrette and Lorna d'Entremont

2010-12-15T07:18:00.000-08:00

While searching Google for the simplest way to describe Tourette Syndrome, I had a flash back to fifteen years ago when I received a frantic call from our

daughter at the University of Ottawa announcing that she had been diagnosed with TS. Immediately after the call, I rushed to research what was Tourette. For years we had sought answers and treatments to help our attractive, above average, intelligent daughter deal with the demons crowding her life.

My search, those many years ago, finally let us understand what our daughter had to confront every day and night. Living in a rural Nova Scotia area with hardly any professional support, we struggled through her childhood and through her teen years. Finally specialists in the Ottawa area had but an end to our questioning and had given us a diagnoses to explain our life coping with unknown symptoms. That day, I learned another new word: other comorbid conditions. The same struggles continued, only now we had names for these demons.

Wikipedia tells us: “Tourette syndrome, or simply Tourette's or TS is an inherited neuropsychiatric disorder with onset in childhood, characterized by the presence of multiple physical (motor) tics and at least one vocal (phonic) tic; these tics characteristically wax and wane. Obsessive–compulsive disorder (OCD) and attention-deficit hyperactivity disorder (ADHD) are often associated with Tourette's.

Undiagnosed comorbid conditions may result in functional impairment, and it is necessary to identify and treat these conditions to improve functioning. Complications may include depression, sleep problems, social discomfort and self-injury.” With these symptoms challenging their every day, you can see why news about a possible break in the search for treatment of TS is very exciting.

A study, led by Matthew State, M.D., published in the New England Journal of Medicine by Yale School of Medicine researchers May 5th 2010, gives hope for treatment of Tourette syndrome (TS).

The Yale researchers worked with a father and all eight of his children who had Tourette syndrome. The State lab took DNA samples of all members of this family and were able to identify a rare mutation in a gene called 1-histidine de carboxylase (HDC) in the samples from the TS members. This gene makes a protein that is required for the production of histamine. Histamine has a role in allergic response and is also a neurotransmitter that influences a variety of brain functions. They found that the mutated protein lost its function.

Strong evidence, that genetic mutations contribute to TS, had lead researchers in this direction for over a decade. Dr. State said that past work on brain histamine by other labs shows that mice with low levels of histamine are more prone to repetitive behaviors that are similar to human tics, and that increasing brain histamine reverses this problem.

"We were lucky to happen across a gene pointing to a well-studied area in neuroscience, pointed out State. There are several new medications in development that increase the release of brain histamine. Based on this genetic finding, these compounds would be good candidates for new treatments for Tourette."

As you can see, Tourette, like many other medical conditons, has many facets and grey areas for which the medical community has no answers. Let us hope the above gene mutation study results in real, long awaited answers …it was in 1884 that Gilles de la Tourette, using the name "maladie des tics", first described the symptoms and in his honor the illness was given his name.

Looking for more posts on Tourette? Check out:

Nix Your Tics! Eliminate Unwanted Tic Symptoms by Duncan McKinlay

Tourette Syndrome ~ Your Child, His Tics and School

Generalizing The Specifics - by Elise (Aspergers)

2010-12-15T07:14:00.000-08:00

A primary issue for children on the autism spectrum is generalization: the ability to take what they learn from one situation and apply it in a totally different scenario. The scenarios may not even be all that different, but introduce a new dynamic or remove a familiar item, and the child can get thrown off kilter and lose the resources they just learned. It's similar to the issues my younger son, HSB, has in math. When given a math formula and the appropriate number equivalents for the algebraic letters, he is able to apply the formula and even understands the reasoning and purpose. But if he is required to take that formula and apply in an unfamiliar word problem or with an unfamiliar set of numbers, he will get lost. He is not able to generalize the specific information that he learned for that math equation. So too, do autistic children have issues being able to understand how certain appropriate behaviors are applied across the board and are general to the entire social paradigm. The question then becomes: how can you help them understand how to accomplish this goal? What can you do to help your child relate their social lessons to each and every situation that they face?

Interestingly, Dr. Temple Grandin accomplishes this task by keeping what she terms a running Rolodex of social situations in her head. She remembers them as if they were social stories, so that she is able to access and filter what she needs to accomplish, how, when, and even why. However, that is not how most of our children will function. It is actually an intriguing idea and concept to use your brain as if it were a social story computer, but that is not going to work for everyone. Especially those like HSB who have a working memory shortfall.

So what do you do? Well to start with, you do teach for the moment. As I always say, you take each moment as it comes. You get them through the challenge of the hour and then when all is calm and all is quiet you sit them down and continue the lesson. You point out to them what happened and how it was dealt with. You talk it through with them what was and was not appropriate. You problem solve how they could have done things better or how they actually did terrifically. You make them understand that certain behaviors that they accomplished at that given moment are actually a general concept and that it should be applied liberally.

For example: How does someone behavior in a grocery store? You practice looking for your items. You practice walking appropriately in the aisles. You practice waiting you turn at the check out and you practice asking for help from one of the sales clerks. When they accomplish this goal of navigating the supermarket, you next take them to the toy store. You pre-teach the situation by reminding them of the appropriate behaviors in the supermarket and how they apply in the toy store as well. You can use social stories, flash cards, and even basic children’s books on what happens when their favorite character goes to the toy store. You try to get them to understand that behavior in a public store is the same in every store.

Now without a doubt you do not have to follow the supermarket with a toy store. In fact, since our children do have the hardest time in toy stores, (the choices can overwhelm them and they are unable to choose a toy) I would actually even make that one of the last lessons you teach. But that is something you and you alone are going to have to decide how to handle and when it becomes a good idea. Something else too, don’t be afraid if your child is not following the rules to leave the store.

I can’t tell you how many times I have left a grocery cart full of items because the boys may have been acting up at that moment. If you cannot calm them down, you leave. There may be a myriad reasons for the meltdown. There can be a sensory overload, which even if you calm them down initially may just erupt again, so be prepared. There may be the tantrum that they want Cocoa Puffs instead of Cheerios for breakfast. This is the tricky part, because our children do have a hard time making choices, but you cannot let them tantrum, you cannot let them melt down, and you above all cannot give into their desire to have both cereals, or give them the cereal you do not want them to have.

You need to be aware of the difference between meltdown and tantrum, whether your child is having issues because of the autism, or issues because they are children and want what they want when they want it. However, in many of these situations your response has to be the same: you must walk away. It breaks your heart, especially when you know that it is a sensory issue or their inability to choose, but they must learn to choose. They must learn to channel their coping skills with sensory issues as well. Again, this is where the pre-teaching comes in. The preparation before the excursion can help with these situations.

It doesn't always work. At some points you may think your child is never ever going to learn how to choose one item from a store, or understand that they just can’t have a certain type of food. I still remember the day I took nursery school-aged HSB to the local candy/toy store. I told him going in that he could only have one toy. We practiced it and we talked about it. So lo and behold he decides he wants two toys. I reminded him that he had to choose one. That was the rule. I even helped him by choosing the toy for him. But he started to tantrum that he wanted both.

I am quite aware that as a child on the spectrum he saw what he saw and he wanted it. That perhaps in many ways he was unable to truly choose and that without both toys his internal systems told him that his life was going to be miserable. However, that is not life. Reality is that you have to make choices. You must choose between toys. We teach this lesson not because we want to be cruel, but because we know that there will come a time in life that your child will have to choose between food and a video game or health insurance and a manga. You cannot begin to teach this coping skill when they are 30 years old. This is a skill that takes a lifetime of teaching. You must begin sometime. They have to understand, as all persons do, that there are limits and those limits are part of the social construct that they will be living in. Yes, as with all things in the social realm this can be harder for them to understand and grasp than for someone who is neurotypical, but they can grasp it. It just may take an inordinate amount of time and make you feel like the Wicked Witch of the West.

Honestly, this also goes for being able to curtail certain habits or the need to eat junk food and trying to have good sleeping habits. Learning limits, whether about toys, candy, spending, or appropriate behavior, leads to a better life and a more successful view of the world. And whether we think so or not, when they are three and crying their eyes out because you didn’t buy them that toy, they just may thank us one day when they are able to live on their own, successfully leading the life they choose for themselves. (OK not thank us, but at least not call us names anymore.)

By the way, the story in the candy/toy store ends with me actually picking HSB up and putting him under my arm and carrying him out of the store. I told him he had to choose and when he threw a fit, refused to choose we left the store. Did it have an immediate impact on his ability or desire to make choices? No. I would be lying if I said it did. It still took time and several more store episodes for him to understand that life is a series of choices, but he learned and even over time he learned that sometimes the choices you make are not the ones you want but they are the ones you have to deal with.

The reality is that there are basic concepts that our children need to be taught and they can be taught in many ways. Here is a small list of generalized behaviors:

Walking and speaking appropriately in a store.
Finding the item you want in the proper way: looking at markers in the store or asking for help appropriately
Standing in line to pay, and waiting your turn if there is any kind of issue to be addressed.
Making sure that you have the right amount of money to pay for the item (of course this is for older children who may need to even pay for their own lunch at school). However, you can start this process by pointing out to your child how you are paying for the item and that the money is in the bank or even handing over cash when you pay. (It is interesting to note, that persons on the autism spectrum can have very bad relationships with money. Budgeting and money management needs to be reinforced from a young age.)
Using proper etiquette when speaking to someone: thank you, please, you're welcome -- it all goes a long way in gaining acceptance and help in society. Demanding and requiring someone to do something for you generally gets no one anywhere.

Our children need to learn to recognize these social attributes. It's essential. So many of our children, due to their speech issues, auditory processing and language issues, have modulation issues as well and their anxiety comes out in their actions/tone of voice. They may be very anxious in any given social situation and it may come out in the way they address someone in a store. The clerk will think your child is being rude or obnoxious when they are simply anxious. Try to get your child to recognize how their body feels, teach them how to cope with the public/social anxiety.

The truth of the matter is that as with everything that our children do, it is only through practice and more practice and even more practice that they will learn to generalize in social situations. Now as far as math is concerned, it took a lot of work to be able to generalize the formulas and at times HSB still does not get it. But that is OK. We came to the conclusion a long time ago that HSB is not going to be a theoretical physicist or an electrical engineer. But interestingly enough he is able to generalize criticism and attributes of video games and films. It seems that is where his abilities lie, which is a good thing considering that is where he has pinned his future career hopes. Of course, he is still going to have to learn to make choices and you know what, he still doesn’t like that, but luckily he doesn’t throw tantrums anymore, because at almost 6 feet and 200 pounds he is just too big for me to put under my arm and walk out of a store.

Values vs. Hype Elise guest post at Cutest Kid Ever

2010-12-14T14:52:00.000-08:00

The national news is full of stories about how people are ready and willing to start spending at holiday time once again. It seems they have confidence in the economy so now while they aren’t going to go crazy at the stores; they are going to make a big dent in that credit card or savings account. You can see the glee in everyone’s eyes and the inundation of buy buy buy…from commercials, to catalogs to online advertisements. We are bombarded minute by minute about all the material things we should have and how we are the worst parents in the world if we don’t buy our children that one extra special or several special toys. It seems the materialism that runs our world has returned and it is once again off to the races.

Now what is a parent to do? Truthfully, the last few years may have been hard economically, but there was that added bonus of correcting our vision of what is right and wrong in our world. We were able to get in touch with what is truly important and redirect our perspectives. The nice thing about it was that you could include your children in on this total about face. We were able to remind ourselves and our family of what the meaning of this season happens to be and how we should approach it and in fact approach every day of our lives.

Now, for our family, charity happens to be a way of life. We regularly give to the local community center; in fact the boys will throw nothing away. Every piece of clothing that they outgrow is earmarked for that center. From the time they entered school we taught them about giving and never failed to put a dollar in that Salvation Army bucket even in the hardest of times. The boys love to put their quarters in the charity jars wherever we go and if there was a volunteer opportunity either at school or at our religious institution the entire family took part. We always had the boys watch the news and learn what is happening in the world. We taught them that they are obligated in this world to give back to others.

This has always been our philosophy. We, as Americans, are some of the luckiest people in history of the human race. We are the politically freest and economically freest. We can do, believe, and create anything that our own imaginations will allow us. The only thing that can stand in our way is ourselves. There are ways to accomplish anything you want to accomplish you just need to figure it out, and believe you me it is out there if you want it bad enough and look hard enough. We Americans, as a people, are blessed and with those blessing comes obligations to help others who have less than we do. (By the way, privately we are some of the most generous people on the planet.)

Of course this does not mean that you do not live well, or educate yourselves, or even enjoy your life. But what it means is that you learn the difference between need and want and where the line truly should be drawn. It is not necessarily an easy thing to explain to a child or even to figure out for yourself as an adult, but it is possible to live and think and realize that there are ways to better your own soul.

We have taught the boys to give financially to charities of their choice from the time they were very little. From the time they were small they have received a lot of money from relatives at this time of year. In fact that is generally what they receive in lieu of gifts. The truth of the matter is that our children have never wanted for anything and other than a few video games and Pokémon or Yugiyoh cards, nothing ever was very important to them. So relatives were told to give them cash at this time of the year and we would use if for when the boys decided on what they would like. Listen you can have just so many sweaters, or pairs of jeans or sneakers before it just becomes déclassé.

Well since we happen to have a lot of relatives the money added up very quickly. In fact, it ended up being just too much money for small children. The reality is that the boys did not need to use that money for necessities; this was entirely money for “fun.” We just couldn’t see the boys throwing all that money away on junk that the next day they would either forget about or not like anymore. So we came up with a plan.

We call it the thirds plan. They got to keep 1/3 of the money. (Ok if it still ended being a lot of money it was greatly reduced. They being children had no real idea of how much money it was anyway and we could direct it how we felt it best.) Then 1/3 got put in their college fund and 1/3, they had to send to a charity or charities of their choice.

I remember one day I was watching Oprah and she had just started the Angel Network. The boys were very intrigued by where the money went and I came up with the 1/3 plan right at that moment. It has worked out well over the years. They of course decided to give their money to that charity that year. Over the years as they have grown, they have participated in food and clothing drives at school, learned about the United Way and the Junior League. They watched commercials on television and wanted to give to the Smile Train, ASPCA, Wishing Well, and Toys for Tots (to name just a few). Many of today’s high schools even have a community service requirement for graduation. Unfortunately our school does not have such a requirement but there are charity clubs to join. They both have joined Save Darfur, Amnesty International, and the general all purpose charity clubs, gathering food for the local food bank, making sandwiches for the children of local inmates at a prison near us for visiting day, packaging medical supplies for Africa and Haiti, participating in Habitat for Humanity. Now none of these activities takes up a tremendous amount of time, but it important that they give some time.

One of the ways that the boys learned to do this is actually by watching us, the parents over all the years. I spent many an hour volunteering at the schools that they attended. I participated in everything from being the library monitor, to helping create printed bound versions of stories that 2nd graders had written, to planning the thank you lunch for the teachers, to being the class go to parent for everything from trip chaperone to party planner. (I vividly remember a big hug from my oldest for being the party mom for his 5th grade graduation party.) And in my final PTA foray the high school treasurer (not my best 2 years) and welcome wagon chairperson for new families. The husband would tag along with the boys when chaperones were needed for large charity projects too. This way they learned that everything isn’t always about work too.

We also like to take the boys out of their comfort zone and have them do things that they have not done before. One year we helped at a local Catholic church to set up a Christmas Day lunch for people living in homeless shelters. By this time they were teens and found the experience very rewarding. They organized toys, clothes and set up the tables, chairs and decorations. Interestingly the church did not need us on Christmas Day as they had more than enough volunteers for then. (I think a very nice indication of the type of people who live in that neighborhood.)

The truth of the matter is that the lessons you teach your children from the time they are very young, are the ones that they learn and learn well. We have always taught the boys to give to charity and to understand how lucky they were. We have taught them that their blessings obligate them to give to those less fortunate, just as they make a wonderful life for themselves. We taught them that you could always better yourself no matter what you do and no matter how much you give.

Now this did backfire on us one day. I came home one day and as usual I checked my credit card on line. Having been a victim of credit card theft I am obsessed about making sure that the charges on my cards are in line with reality and that no thief has access to my credit. So I went on line and saw an unusual charge for a charity. At least I thought it was a charity and called the 800 number associated with the charge. Yep, I was right a charity. Now I had not made a new donation and neither had the husband. I decided to confront the boys. Didn’t think some stranger would steal my card to give money away instead of charging a Barbados vacation. It turned out that my oldest had decided that I had not given enough to a particular charity so after he had given his 1/3 of his holiday money he added some more of my money to the pot.

Did he know what he was doing was wrong? Apparently since he went into my email and deleted the confirmation emails that were sent. So he definitely was trying to hide what he had done. The only problem was he didn’t realize that we received bills. How he thought we knew how to pay the amount due I never actually got a straight answer. However, he learned another lesson that day. That taking money that does not belong to you and giving it away to a charity is still stealing. Kiddo lost his 1/3 of “game money” and had to do chores to make up for the rest of the money spent. No, we did not call and cancel the donation. Thought that would be disgusting. Luckily, he hadn’t given away so much that he spent our mortgage payment. But he did get a lesson in budgeting and how you have to pay your bills as an adult before you give all your money away.

So this is one of my favorite stories. In fact no matter whom I tell this story to they usually crack up laughing. Children steal their parent’s credit card for expensive sneakers, video games or an iPod. My child stole to give away to a charity. Guess you can’t make these things up. The stealing part not so good, but the charity part I am pretty proud of. Meanwhile he definitely learned his lesson about taking my credit card no matter what the reason.

The truth is that your children do learn from you and your actions. If you want them to have a good understanding of the difference between need and want you need to set the example. If you want your children to give to charities and help out those less fortunate you need to spend some of your time doing the same. Just because we live in a materialistic society doesn’t mean that your children need to value things over duty. That is up to you and your duty to them. By the way I didn’t mention that both of my boys have aspergers syndrome, a form of autism. See there is a no reason to not teach values, morals and ethics.

Happy Holidays.

Elise
aka aspergers2mom

What is The Coffee Klatch - Pierrette and Lorna d'Entremont

2010-12-14T14:50:00.001-08:00

Marianne Russo, the founder of The Coffee Klatch explains: "A virtual cup of coffee with parents of special needs children. Our goal is to offer support, information, education and inspiration to the parents given the life unexpected, the life with a special needs child."

Their web site: http://thecoffeeklatch.com/ states : "The Coffee Klatch is an interactive forum on Blog Talk Radio and Twitter bringing you expert guests including award winning authors, doctors, psychologists, advocates and representatives from the world's most respected children's organizations. We feature daily topics for all disabilities b

oth physical and emotional."

You are your child's best advocate, if not you then who, become an informed educated parent.

Meet share laugh and take some time for yourself. Join the moderators: ~ Elise ~ Pierrette left ~ Jane ~ Chuck below ~ Marianne right

Twitter (Tweetchat):http://tweetchat.com/room/tck Monday Tuesday Thursday 9-10:30 am EST

Blog Talk Radio and Twitter: http://www.blogtalkradio.com/the-coffee-klatch Wednesday and Sunday 9 pm EST

Blog: This fine group does not only Tweet or Chat...check out their inspirational posts here: http://thecoffeeklatchblog.blogspot.com/

Facebook: http://www.facebook.com/profile.php?id=100000689323812&ref=profile#!/group.php?gid=302086692737

Twitter: http://twitter.com/thecoffeeklatch

The Coffee Klatch Guests Daily: http://paper.li/TheCoffeeKlatch/the-coffee-klatch-guests

A 'One of a Kind' Event: Nov 1st, 2010 Communicate To Educate A 24 Hour International Event For Autism. See more here The following is a link to a video Marianne made of the numerous moderators, some who gave hours of their time, to this remarkable event: http://www.youtube.com/watch?v=cLiuhahxeGQ

What is NEW

The first "Your Chat" a new format on The Coffee Klatch starts Tuesday December 7th. You tell us what you want to discuss. Please post your requests on their Facebook page, on Twitter or feel free to message on Facebook or DM on Twitter if you want it kept confidential.

You Gotta Get In The Game - Chuck Walley

2010-12-14T14:46:00.001-08:00

One of my favorite memories of the past football season as to do with a young man on the team – “Good.” I call him this because, when we stood next to each other, good things happened on the field. I met him in the spring at a football camp and instantly liked him. He had an air of innocence, with a scraggly beard. Good has Asperger’s. (No one told me as much, but there was no need.)

Fast forward to a Friday night in early September. The team was warming up on the field with Good sitting on the bench. I sat next to him, offered gum and tried to start some chitchat. I was curious as to why he wasn’t in uniform for the game. “I missed practice this week.” He was bummed, so we spoke about his role on the sideline. I told him, “You gotta be in the game. You gotta be there for your buddies. You gotta have their back, pump them up. You’re part of the team, you gotta be in the game.”

As the team took the field, Good had tears running down his cheeks. I stuck next to him. “Gotta get in the game. Gotta stay in the game, cheer your buddies on.”

As the half wore on and as half-time approached, I asked Good if he was going to the locker room. “No.” “No, why not? You’re part of this team. It’s your job to support your buddies. C’mon, you come in with me.”

So we went. He went into the locker room with the team, I stayed outside the doors, out of the way. 15 minutes later, the marches out the door for the second half. Good is dressed in his uniform. Cool, the coaches let him get dressed for the second half. Really cool of them.

The second half started and the teams struggle back and forth. I see Good sitting on the bench. “Good, you gotta support your buddies, you gotta get into the game.” Good stands, put on his helmet, but has this look in his eyes like “Are you sure?”

It hits me. I ask “Good, which coach told you to put your pads on.” Good replies “You did!”

Duh! Hello! Literal! – “Get in the game!” I meant “Stand on the sidelines. Cheer. Support your buddies.” He heard “Get in the game.” I should’ve known better.

I explain to Good, I’m the assistant water boy, not a coach. I also assured him I’m explain to his coaches what happened and he wouldn’t get in trouble, because at this point, he was really worried.

Don’t worry, it all worked out – and I relearned a lesson. I gotta get in and stay in the game.

Communicate To Educate A 24 Hour International Event For Autism Hosted By The Coffee Klatch

2010-11-29T20:36:00.000-08:00

Autism's Sole Criteria: Human by Elise

2010-11-04T06:07:00.000-07:00

Participating in the 24 hour Communicate to Educate event from The Coffee Klatch (link on the sidebar) was a very exciting experience. We had almost 75 guest moderators who shared their lives, experiences and insights with all of us. Our reach was global and our participants from all corners of the world. It only proved the point that autism is one of the truly nondiscriminatory things that can happen to a person. It doesn’t care what your skin color is. It doesn’t care what religion you are or if you even have a religion. It doesn’t care what country you come from or your ethnic background. It doesn’t care how you vote, or if you can even vote. It doesn’t care how rich or poor you are. The only thing that autism cares about is the fact that you, your children or someone you love is human. That is its only criteria for bringing itself into your life and the life of your family.

Because autism, itself, is universal, I found that the issues that surround autism are universal as well. Parents constantly try to figure out just what they did wrong, how did they cause this to happen to their children? What is it about the pregnancy or perhaps parental age that triggered this genetic predisposition? What could I have done differently? Why am I so sad? Am I selfish to be angry? Am I a horrible parent to not want this for my child and am I one of those parents who needs a perfect child? Is it mostly about the child or am I so angry because of how autism changed my life so much?

Then we moved on to questions of care and support. What can I do when they are little? How important is early intervention? How many therapies should they get? Which are the best ones and how do they work? Can someone tell me about medications, they frighten me? How do I know which ones are the right ones for my child or for me? What do I do with the diets and supplements? How important is the proper supports to their success? Did the fact that I missed this disability and they didn’t get early intervention doom their future?

Then there are the typical school questions. What kind of school should they go to? Is mainstream better or self-contained? How do I make sure that they are safe in school? How do I make sure that the school understands how smart they are? How do I make the school realize that autistic children are not like NT in behavior? How can I stop them from applying a zero-tolerance policy to children who don’t get the social nuances? How do I get them to understand my child’s sensory issues? How do I get them to take the social deficits seriously? How do I get the school to realize that aspergers is autism? When do I need to hire a lawyer and sue? How do I get the school to protect my child from bullies? How do I make those charged with my child’s welfare to care and watch over him/her for those crucial 8-9 hours everyday?

Then of course, there are the interactive family questions. How do I keep my marriage? How do I keep related to my other children? How do I keep related to myself? How do I not loose myself while I try to save my child? How do I make family members understand that this is not a phase and my child is not spoiled? How do I get family members to read a damn book on the subject before giving advice about something they know nothing about? How do I get out of Sunday dinner at grandma’s house because my child will only have a meltdown and it will be miserable for everyone? How do I explain to my parents that Christmas morning is no longer Christmas morning without taking from my parents their dreams too? How do I get grandma and grandpa to understand that my child loves them even if they don’t like being hugged and kissed? How do I remind myself that because my child can’t say I love you, that there is a lot of love inside my child? How do I remind people that it is MY LOVE for MY CHILD that will propel me forward forever?

Well we chatted and tweeted and helped each other. When we couldn’t find an answer we tweeted a HUG because sometimes that is all we can offer each other. One other thing I also learned over the last 24 hours, if I wasn’t sure of it before, is that sometimes, there are no answers. Sometimes you really need to fly by the seat of your pants. Think out of the box and discover for ourselves the answer(s) for our children. Someday the world may find the answers for these universal questions. But until that time it is important to remember to keep asking the right questions. For without these questions we will never know the answers.

Until next time,

Elise

Communicate to Educate a 24 hour Autism Event - Why we are offering this option

2010-10-29T09:40:00.000-07:00

As with everything else in the Autism community there is division as to what is best, perhaps the reason is in the diversity of the disorder itself. I am the founder of The Coffee Klatch and respect the opinions of all. There is validity to any attempt to raise awareness for Autism and I respect and welcome all and wish the "Shut Down" campaign much success. It is our position, based on the wishes of the many adults on the spectrum, advocates and parents who have reached out to us ,as well as our own personal opinions that shutting down communication is not the answer. I actually feel that the “Shut Down” effort is in large population doing quite the opposite, encouraging those with a voice in Autism to speak even louder. My goal is to encourage those who truly want to understand the challenges and struggles as well as the incredible brilliance and gifts of Autism to be educated by the the best advocates, experts, authors, therapy providers, parents and most importantly those on the spectrum, to come together in one place for an entire day to “Communicate”. I am very proud of the overwhelming response to our invitations to those to be Guest Moderators. The line up is impressive. We have chosen to do the event totally on Twitter verses our Blog Talk Radio to ensure that everyone has a chance to interact. With education will come compassion and acceptance – It’s time. In the end we all have the same goal - to raise awareness. And on November 1st 2010 whether you shut down or shout out - we will all be working towards that goal.

Please see the new statement regarding the Shut Down effort from the organizers:
https://communicationshutdown.org/?view=more-info

Communicate to Educate at The Coffee Klatch respects their efforts and wish them much success. I personally want to thank them for acknowledging our event as well as Autism Speaking Day and for showing mutual respect and unity, something the Autism Community needs. We are proud to be a part of this important day. Today you have to make a choice – “Will I raise awareness of Autism?” How you choose to participate does not matter, Shut Down or Shout out but please, do something, participate.

Marianne Russo

Thank you for helping make the event a tremendous success. The over 50 experts, advocates and guest moderators who participated created many poignant moments. Thousands of participants came, spoke out and were heard. I have been in contact with the organizer of "Communication Shutdown" to offer my congratulations on their event and to offer continued support and unity. Our goal was to raise awareness of Autism, dispel the myth about people living on the spectrum and give Autism a voice. I am very proud to say that on November 1st, we did just that.

Holidays Ring Hollow for some Special Needs Children by Lorna d'entremont

2010-10-19T07:09:00.000-07:00

Lorna d"entremont is a frequent contributor and guest host on The Coffee Klatch. She is also the mother of Pierrette and is a very active advocate and mentor to all of us. Honored to feature one of her writings here.

Holidays and celebrations, like Easter, Thanksgiving, and birthdays, should be a happy time in families. When I think back to those days of celebration, when our children were growing up, the memories I have are not at all happy ones.

If I had known what I know now about my child’s sensory issues, we surely would have done things differently. Thirty years ago Sensory Perception Disorder was not talked about, not written about and certainly could not be googled, tweeted and discussed on Facebook.

Being the oldest one of our family and having a huge kitchen, it always fell on my shoulders to welcome relatives and share a meal for these occasions. So this scenario has many reruns with a few different scenes and endings. However, in retrospect, the main theme was always the “Perfect Storm” for a highly sensitive child.

Let’s walk through a typical ‘special day’ of celebration. In our home, we would all rush about to get ready to attend a church service. Like was the tradition back then, going to church meant wearing your ‘Sunday Best’. To a sensitive child that meant stiff, itchy, ready to scream uncomfortable clothes and shoes!

*Picture of oldest, now, with three children of her own--one who has sensitive issues-
but now we KNOW!

So some sounds are hard to endure for these children. To her, the high pitched voice of the choir member singing the solos was like the screech of a nail on a blackboard. And did I mention the church bells, especially the smaller ones that ping, ding and dong during the service. Now let’s listen to the human noises that make this poor child shiver in her black patent leather shoes with the tight little straps. Coughing, sneezing, blowing noses…what torture for a sensitive child to be surrounded by such noises.

Special occasions in church come with huge, colorful , flower arrangements. To a sensitive nose the mixture of the sent of flowers, ladies’ perfumes, men’s aftershave, leather coats and burning candles all make for a nauseated feeling accompanied by an awful headache.

To this child who does not want to bring attention to herself in any circumstances, walking up the church aisle, going to communion and greeting the other church goers after the service must have been her own little crucifixion. And added to that were the photo taking sessions at home, the gift unwrapping done one by one while all the others watch, the endless questions by well meaning relatives and the requests to play the piano for the ‘happy gang’.

Finally it is time to eat. Table is nicely set, guests are seated, food is plated and begins another round of agony for the sensitive one to sit through. The oldest member of the relatives is deaf and very set in his ways. The preparation of his cup of tea is another irritation for the one sensitive to high pitched sounds. With his spoon, he mixes his sugar while all the while tapping the sides of his cup…he is deaf so the tapping changes to bagging the sides. This is the last straw for the poor child who has kept everything in for much too long, a vocal tic like the barking of a dog is heard. The table guests become all quiet and my deaf, too old to have figured it out, father-in-law says: “ Since when do you have a dog?”

Pain written on her face, she gets up and escapes to her room. With a lump in my throat, tears in my eyes and a vice-grip squeezing my heart, I try to make light of the situation. I connect to my robot mode to continue my role as host of another ‘special day’ that we should have celebrated differently---if I had only known.

Changlings and Shapeshifters and Ghouls - Oh My - Adventures in OZ by Elise

2010-10-11T17:10:00.000-07:00

This is a repost from October 2009. With Halloween just around the corner I thought it might be relevant to understand that not every holiday is for every child and that it is just fine, not withstanding some idiots who seem to think otherwise. Read the abuse heaped upon some other bloggers who openly told how their special needs children do not celebrate Halloween in a typical manner. (here, here). Sometimes just when I think society has started to grow-up it never fails to amaze me just how far we still have to go.

I have been hinting for several weeks about discussing our issues with Halloween. I know I have been sidetracked because of the many adventures of Collegeman and Highschoolboy and I apologize. Anyway here goes the wonderful reminiscences of my years of trick-or-treating. I have to tell you that my favorite picture in the whole world is the one I referenced in the earlier post Changing Your Dreams: Life With an Autistic Child. It's the one where collegeman and highschoolboy are still really little. Highschoolboy was even still in diapers. He was dressed as his favorite character in the whole world, Winnie-the-Pooh and Collegeman was superman. I love this picture for the total parental reason that they look so cute and adorable. But if you look really close, what you can also see is a look of unsureness on highschoolboy's face. He seems to be saying to himself "I am not to sure about this costume thing." Now highschoolboy had not been diagnosed yet, so as much as we were aware, unfortunately it wasn't until much later that we picked up all the signals.

Highschoolboy had always been terrified of clowns. Not just the child afraid of the scary looking man with the balloons, but a down right terrifying Nightmare on Elm Street kind of fear. If a clown showed up at a party highschoolboy had to leave. If a clown showed up at pre-school he could not go to the assembly. I had been assured by the pediatrician that alot of children are afraid of clowns. So I thought nothing of it. It wasn't until recently that a person I follow on twitter who has aspergers explained to me that it was a very common fear among autistic children. The distortion of the facial features is very confusing. Who knew, another misheggas (nonsense) that our children get to deal with.

But what I had not figured out at the time of that Halloween picture is that absolute fear that this holiday engendered in my son. It was not the ghosts and goblins. He knew like any child that they were not really real. He knows that Dorothy doesn't travel to OZ and that the Wizard is not a real person. (However, we do know that the Wicked Witch of the West exists, we just can't melt her with water.) But he really believed that when people put on masks and costumes they transformed, shape-shifted like a changeling, into those ghouls for the day. He thought that there was some magical power that the "Halloween Aura" had over the masks so that people's personalities were transformed into those monsters or characters. So every year when he went trick-or-treating and put on a costume, he would make sure to only wear part of the costume, or no costume at all. We have pictures from several years worth of Halloweens and in each one he is very hesitant and looked frightened. Again we thought nothing of it-made excuses, like he had an ear infection or was coming down with a cold. He never ever said anything. Just thought it was a kid thing, you know a little more intense than the average child, but that is highschoolboy.

Finally he admitted (sometime during the middle of elementary school) that he was afraid and did not want to trick-or-treat. We assured him that he did not have to. It wasn't a requirement of being an American kid. Well, I can't tell you the relief he had that year. I felt so bad that here for all these years we had made this child do something that really terrified him because we thought he was having fun. I tell you guilt has a way of creeping right into that little nugget called your brain and wrenching you inside out and upside down. What a mommy-moron I had been. Still beat myself up over this one. (Can you tell?) I had thought I was on top of things. Boy did I learn the hard way to pay better attention to the signals my kids give off.

Now over the years, once we understood the issues, we informed the schools to be on the lookout for him getting upset. They have more than obliged. They made extra sure to watch him and keep him happy. There were even a few times that I kept him home if there was going to be a Halloween party at school. I guess that shows just how afraid he was. A kid giving up candy and cupcakes and a party in school. What we did do at home, however, was for him to help give out the candy. He actually really likes that. He didn't have to wear a costume and he got to participate in the holiday.

I have to tell everyone though, the anxiety this holiday causes him has not really gone away. I still have to remind him that kids will be wearing costumes to school for Halloween and that if he gets upset to go to the nurse. He assures me that he is OK now. That he can handle the confusion. I guess maybe that is a large part of it too.The rules are thrown out and kids behave badly. Nothing is what he is used to and change and a lack of order are not somethings that makes him happy. Hopefully he understands what happens on Halloween. That today there will be hijinks and silliness. That some rules will be broken. That masks don't turn you into the undead. Maybe those are the rules for Halloween he has learned to follow. So he is more comfortable with the holiday today.

Luckily the school where highschoolboy attends does not broker too much nonsense. So he will not feel so overwhelmed. It also happens to be one of his lighter class schedule days today. So everything will be easier. I know however, that in the back of his head he is like Dorothy knowing that for safety and security "there is no place like home."

For some really good ideas on how to have a modified and happy Halloween, read this post by Shannon Des Roches Rosa at The Thinking Person's Guide to Autism.
Until next time,
Elise
Posted

Potpourri by Marianne Russo

2010-09-29T15:17:00.001-07:00

Potpourri, I have always loved that word. The word congers up wonderful thoughts of bountiful fragrances, a palette of beautiful colors and a feeling of tranquility. It brings back memories of my grandmothers house with little aromatic bowls that gave her home its signature scent. It is a wonderful word.

The word potpourri has several definitions. The first, as I mentioned, is an aromatic mixture of dried herbs, spices and flowers. It also, in present day use, describes a miscellaneous collection or medley. The etymology of the word is French pot pourri, literally, rotten pot dated back to 1749.

When using the word Potpourri in reference to the child with a mental illness it takes on a whole new meaning. Professionals use the term "co-morbidity". I think I like "potpourri" better. Co-morbidity is the term used for multiple disorders. It is "literally a rotten pot".

Comorbidity makes for high rates of misdiagnosis among these children. It is rare that you find a child with just one disorder. Tourette Syndrome, OCD, ADD, PDD, Autism, Depression, Bipolar disorder the list goes on and on. Often times these children have one or more additional disorders which not only makes the diagnostics more difficult, but the treatment pure trial and error.

Adding to the confusion are the subgroups within the disorder. An example: A child with Tourette syndrome with severe exacerbation of tics or ocd symptoms after a strep or viral illness would be considered for a diagnosis of PANDAS or PITANDS as their subgroup. A test to identify the D8/17 marker would be performed. Treatment would be initiated. Seems simple, but it is not. There are subgroups within even this subgroup. Example: some children with PANDAS or PITANDS have different presentations. There is a subgroup that only have exacerbations after viral illness and others only after bacterial. Some respond to antibiotic treatment and some do not. On the autistic spectrum, there are some children who while with fever have significantly reduced symptoms. Dr Andrew Zimmerman at John Hopkins has done studies on these children and its relationship to the release of cytokines. Some of these children respond to augmentin - a preparation of amoxicillin and the potassium salt of clavulanic acid - rather than its base component amoxicillin alone,others do not. It is an eclectic puzzle. A potpourri.

Treating the child with multiple disorders, a potpourri, is a daunting task. Sifting through the symptoms to label the disorder is sometimes futile. It is understandably necessary for insurance coding but often times serves no purpose. Treating the symptoms is key. Looking at the child as a whole instead of a diagnosis, I feel, often times serves the child better. We are all complicated creatures but the child with a mental illness is like a convoluted bowl of emotional potpourri.

Here We Go Again- The IEP Carousel by Jane Hotvedt

2010-09-23T14:17:00.000-07:00

Here We Go Again - The IEP Carousel

Interesting day, today... I started out with a meeting regarding son 6 and his IEP. For the uninitiated, IEP is Individualized Education Plan (which, by it's very definition, should be, you know...individual.).

I realize that the school and our special education co-op would like very much to have son 6 participate in social skills group. My issue is not whether or not there is benefit, but rather whether it fits the "A" in FAPE (Free, Appropriate, Public, Education) to which every child is entitled. Yes, he may have some issues socially, in fact, he DOES have some issues socially. However, in recognizing that, we must also say that he has made progress insofar as he is no longer hitting fellow students to get them to move, but is rather politely requesting that they move, counting to four, and THEN hitting them. LOL, I know. But the goal I hold for each of my kids is that they make progress, not that they get perfect. "Progress, Not Perfection" is our mantra. If he has made progress, and continues to make progress, then I'm not really sure why the social skills group is necessary. It adds another step he doesn't need to contend with - generalization. If his interactions are successfully facilitated, he won't have to generalize to another environment - he's learned in the environment where he needs the skill!

We're back to the place we left off last spring... "Mom, do I have to go to school? I hate, despise, loathe, and abominate school!" "It wouldn't be so bad if they allowed a little autonomy, and let me do my work my way, but I don't even have any friends to help me. Why? Mom, I'm the weird kid, remember?" My heart bleeds. Why, oh why can't we get the point? NORMALIZATION. Teacher, accept him. Para, support him. Kids will follow suit. More is caught than taught, and if you make him stand out, he will be the one left out. Help him grow, give him his tools... trust him - he knows when he needs his bear, and when he needs his mirror, and when to listen to the CD and breathe like Darth Vader. TRUST HIM. Let him be himself - you might even like him.

Being a Special Needs Mom - by Pierrette d"Entremont

2010-09-21T17:47:00.000-07:00

A Special Needs mom in on duty 24/7. Moms of Special Needs kids run ragged dealing with all the added responsibilities. They find it almost impossible to maintain balance and harmony in their hectic lives.

There are appointments/meetings with medical professionals, with school staff, with support groups etc. There are the tremendous cost of professional treatment,of the medications not covered by any plans,of special clothes, food and accessories/tools. Furthermore, if a family has more than one child, there are a lot of child care costs involved for the other children while the SN child is taken to his appointments or when the parents are off to theirs.

Another problem is how to juggle the demands of a home, a husband, other siblings, the care of their own aging parents, their job and the demands imposed by perhaps the one who needs them the most. Many moms of SN kids feel guilty and overwhelmed because they simply cannot find enough hours in a day to do all that is expected of them and most nights they do not get enough sleep.

Stay at home SN moms who never get a break with routine have feelings of separateness and isolation. Each day there are so many demands on their time and energy that friendships and interaction with other adults have no chance to be nurtured. Special Needs moms live on a lonely planet not even having the time to keep abreast of worldly events, rarely having the chance to read for pleasure nor cultivating a pastime like photography, sewing, pottery… normal things that normal moms take for granted.

Often, when finally out in public, these overburdened moms walk around with a lump in their throats because they feel saddened by or angry about the way people are reacting to their child or to their family as a whole. Feelings of inadequacy abound as it seems ‘the public’ is questioning their parenting skills.

SN moms need support from family, friends and groups with similar problems. They must learn to delegate tasks so that they get sufficient rest and time to take care of themselves so they can continue to care for the others.

There would be no greater gift to a SN mom than the gift of your time and emotional support: “Go out for awhile, do something for yourself I will care for all your kids.” Surely you know someone who would appreciate to hear that from you

What do you find most difficult being a special needs mom?

Life May Suck But You Are Still A Human Being - Elise

2010-09-21T04:35:00.001-07:00

Guess what …your life sucks. It sucks. You have no money. Your husband works all the time. You are generally alone with your child. And oh yeah, your child is autistic. Your child rages, has sensory issues, can’t speak and you can’t take them anywhere because you don’t know how they will react or what will set them off. You can’t remember the last time you had a shower that lasted more than 30 seconds, if that long and never mind the idea of a manicure or pedicure. You wear a hairstyle that doesn’t really need care; you just stick your hair up in a pony tail and are off with your day. Make-up, heck if you even forgive yourself some face cream it’s what is on sale at the BJs or Costco and you don’t really know if it does any good. You can’t remember when you even had a cup of coffee in peace and quiet. You can’t remember the last time you bought yourself a new piece of clothing, not a fancy little black dress, but even a new pair of sweatpants. You don’t go on vacation. You don’t go out to lunch. You don’t even send your child to school because they won’t support your child properly so you homeschool. You don’t remember the last time you had a good night sleep….oh and the house needs a new roof but there is a new therapy that may help your child so where is the choice….

Many people will tell you that you are not allowed to be angry about any of this. Many people will tell you that you are not allowed to be depressed about any of this. Many people will tell you that you are not allowed to resent anything in your life. Many people will tell you that you need to make peace with what is our life. To them I say Bullshit. You are angry. You are sad. You are depressed. You are furious at the way your life turned out. Does it mean you don’t love your child? Does it mean you don’t love your husband? Does it mean that you will run away never to be heard from again? No. No. And No.

What it means is that you are human and have a right to be disappointed, upset and angry about everything that has happened in your life. And yes it is not a bad thing to say it has happened to you. Sometimes things really aren’t just about your child. It is not selfish to want the things that make us human. It is not selfish to want to be able to take a shower, drink a cup of coffee in peace, go to the market and not have to deal with a meltdown (and those nasty horrible stares). It is not selfish to want to be able to buy some cosmetics in a department store and maybe a new pair of jeans along the way. It is not selfish to want to spend some time alone with your spouse. It is not selfish to want to have a mani/pedi and a real haircut once in awhile. It is not selfish to want to join a girlfriend for lunch and talk about nonsense. It is not selfish to want to have somethings that are not life and death in your life.

We, as parents of special needs children, focus all of our energies on helping our children progress and survive that in so many ways we forget about ourselves. We forget that we are human and allowed to have wanted a different type of life. I am not talking about the fairytale, nobody really has a fairytale life, but what we ask for is truly just the basic everyday aspects of existence. You are allowed to not be happy with the way things turned out. You are allowed to hate, what has become of your hopes and dreams. You are allowed to despise the doctor visits. You are allowed to be disgusted that your child has to be a test-tube for medications. You are allowed to be repulsed by the lack of support in society for parents like us. You are allowed to be depressed, angry, sad and resentful….Now what do you do?

You get off your ass and do what you have to do. Listen it is human and we need to allow ourselves to be human, to have every emotion and run the gamut from sad, depressed to violently angry (as long as you don’t act on that violence). There is nothing wrong with it and you can forgive yourself your own humanity.

You know I hate it when psychologists tell us that we have to mourn the child that we thought we were going to have. Not because we do have to recognize that things will be different, but they leave off the part about mourning the life we thought WE were going to have. I have found that every step of the way in my boys lives I have been confronted with just how different things could be for them if they did not have autism. Yes, my boys are some of the lucky ones. Yes my boys have potential. Yes my boys just may have the complete life they are entitled to have. But what about how every step of the way our lives would have been different too.

Therapists I think forget that everything is not always about the children. They worry that we, as women especially, will feel some sort of guilt for causing our children’s autism. Believe you me that was never an issue for me. The reality is that no one actually every discusses what you can do for yourself now that your world has been turned upside down. No one ever discusses what you can do for yourself to help yourself deal with the stress that has been placed on your shoulders; other than go to a therapist or take drugs. Truthfully I had had my fill of both very quickly. Therapists have no answer and quite frankly the drugs just made me fat, which didn’t really help my self-esteem or my health any. Neither provided me answers. I had to find that out for myself. No one ever discusses with you that you are entitled to a future just like your children. It’s as if as soon as that autism diagnosis is said out loud you cease to exist as a human being. I am here to tell you, that it’s not ok to cease to be.

I remember when collegeman was finally placed in his out-of-district autism specific program, which was in another regular elementary school. I came to help him at the book fair. While I winded my way through the corridors looking for his class, I passed several regular kindergartens. They were all sitting in a circle and singing a very innocuous song. They were laughing and clapping and being 5 years old. I knew my son could not do that and neither could any of his classmates. You bet I got angry. You bet I started to cry. You bet 15 years later I still feel what it was like in the hallway. I remember I made myself a promise, or rather, remade the promise, that I would help my children have the life they were entitled to, no matter what.

I had originally made that vow in the doctor’s office when they read the report on collegeman’s testing. No one was going to tell me my baby was not going to have a future. What I forgot to promise was that no one was going to tell me that I was not entitled to a future too. Now, as I have said before, I did come into the world of autism, before there was social media, facebook, twitter and on line support groups. You just didn’t find support in the world by answering an add or googling autism. There were no real conferences, books, YouTube videos to tell you whether you were on the right track or not. You were alone in a world, stuck in a house with some very disabled children. But that should have not been the end of my humanity. Luckily my parents aw that and bought me a little television for the kitchen so I could watch adult programming, even the news to remember that there was a bigger world. It was the best thing anyone had ever done for me. It reminded me that everything wasn’t about the boys.

I think it is important to remember our own humanity. I think it is important to remember that you are entitled to a new pair of sweatpants and a new bra every once in awhile. I think it is important to remember that you can buy yourself some new eyeshadow or descent face cream. I think it’s important to remember that you can read a book, go back to school, or even take an acting class if you want. It is important to remember that you need an outlet and that you are entitled to a life of your own as you make sure that your children have a future of their own. I think it is important to remember that you have access to media, information and support in the netherworld of the internet and in many cases we can find our voice in our own anonymity on line. Yes blog, baby blog.

But most of all I think it is important to remember that just because you are angry, sad, depressed, pissed off beyond any sense of reality, does not mean that you don’t love your children. I say it is because you do love your children that you are so angry. And you know what you are entitled to love yourself too. BTW I can’t stand the people that say they love their children’s autism because it is a part of their children. Bullshit. Bullshit. Bullshit. I have never heard such New Age namby pamby crap in my entire life. (So now the neurodiversity crowd will come after me that is fine.) But autism is not who my children are. Autism makes it harder to be who they are. Autism makes it harder to enter a room. Autism makes it harder to digest auditory information and make decisions. Autism creates anxiety. Autism causes their seizures. (Collegeman goes back into the hospital this weekend for another video EEG because his seizures are acting up and no one knows why.) Autism makes it hard for them to make friends even though they desperately want some friends. Autism makes it hard for them to go ask a stranger in a store for information. Autism makes it hard for them to learn how society functions. Autism makes everything hard period. Autism makes them the “other” in a world that is not ready for them. Autism makes them the experiment when all they should be are just boys. Autism keeps me up at night because I do not know how to protect them from the world outside once I am gone.

I say acknowledge that this anger comes from the fact that you do love your children. They did nothing to deserve this. You did nothing to cause this. Harness this anger. Harness this depression. Harness this really pissed off attitude and make it work for you and your children. We fight the good fight for our children, no matter how draining it is. Don’t’ forget to fight the good fight for ourselves; for our marriages; for our very existence as human being. We can also begin by just acknowledging that sometimes life just sucks. OK, enough bitching...Now its time to get to work again...
****************

On another note:...Glee and The Big Bang Theory begin again this week...time to laugh and sing...and get over some of our being pissed off for awhile.

Dancing In The Rain - Learn to let it go by Marianne Russo

2010-09-20T06:26:00.000-07:00

Life isn't about waiting for the storm to pass ... it's about learning to dance in the rain.

The storms, I have waited for more than my fair share to pass. When younger, I fought them. I am now older and wiser.

I would wake to another day of despair. Another day of wondering how I got here and how I would get out. I woke thinking of the boy who broke my heart. The young woman that strengthens me. The little one who keeps my heart beating. The man who has loved me unconditionally and the girl whose suffering has taken my soul, the one who brings the storm.

I had wonderful memories and a happy life. I had known love, affection, happiness and contentment. I held on to those memories. They gave me hope. Hope that I would someday have them again, and I do.

In some ways my life is like a tragic novel. In others it is a story of determination strength and hope. It is a story of motherhood and all the hopes and dreams that we expect, but should not. Some of it is quite funny, some of it is just sad, some of it is just unexplainable. All of it makes me who I am.

The boy that broke my heart. He was 17. There had been a car accident. He was not my biological son, but he was mine. I loved him as mine, I raised him as mine and I miss him as mine. The unexplainable. He died six years ago September 9th. That is the official date but his actual death was a week before when his soul passed through my husband and I as we we stood in the hallway of the ICU. It was an electrifying breeze that went through us, and we knew. Unexplainable - how could such a young, talented and sweet soul be taken - it will forever be the most painful moment of my life.

Regrets come with loss. It's the little things. I still cannot pass his bathroom and not feel regret. Every morning he would wipe toothpaste on the sink and throw the towel on the floor. Every morning I would yell at him. Now, I would give anything to clean that sink and pick up that towel. My daughters bathrooms are a disaster and I couldn't care less. I've learned to let it go.

The young woman who is my strength. She is twenty four now and finding her way. I admire her. She has such compassion and depth. She makes me laugh. Through all the difficult times she could always make me smile. She has been through so much. She lost her father at eight and she lost her brother who was her best friend at seventeen. To say she was devastated would be an understatement. Somehow, she grew strong and optimistic. Youth I guess. A young life with so much sadness and confusion. She has grown into an amazing, independent, successful woman - she is happy - she is a joy. She learned to let it go.

My heartbeat. She is sweet and fragile. In some ways she has been through more than all of us. She has lost her childhood in a sense. She has known loss, heartache and faced the storms way beyond her fourteen years. A lot like her older sister, she is beautiful and kind. She is still the one with her brothers picture under her pillow. She is the sensitive one. Despite it all, she has found a way to overcome all the adversity and thrive. She is once again happy, outgoing and just being a kid. She learned to let it go.

The storm hit without warning. The storm affected everything in its path. The storm raged inside my child. She was the most beautiful baby I had ever seen. She was healthy and happy and mine. She was different. No one else saw it, but I knew. A mother just knows. She is sixteen now. She is brilliant, not just a good student or smart, brilliant. Her life has been a series of doctor appointments, blood work and brain scans. She is tortured by her illnesses both physically and emotionally. She grapples with the irrationality of her life on a day to day basis. She is a prisoner of anxiety. She has faced the storms. At times I would say she has even provoked the storms, but she is outrunning them. She no longer harbors the bitterness and anger of being chronically ill. She is getting better. She has hope. Hope is the mainstay. Without hope there is nothing. How does she find the hope - she's learning to let it go.

On some level, happiness is a conscious decision. It is the decision to not feel guilt over things of which we have no control, to let go of regrets, to be happy, to intentionally seek the good in life and people. Accept what you are given and never give up hope.

Life is too short.

Learn to let it go.

While we waited for the storm to pass ... we learned how to dance in the rain.

http://www.facebook.com/video/video.php?v=1086499647846

Engagement by Chuck Walley from Adjust and Proceed

2010-09-08T13:47:00.000-07:00

Football season is in full swing, which takes The Bean to the sideline. He is a manager for his high school team and he cherishes his position. He loves the camaraderie and daggummit, he just loves football.

As much as he loves it, when he’s on the sideline at a game and he’s left alone, he’ll become absorbed with whatever it is he gets absorbed. Unfortunately, it isn’t the football play happening 40 yards from where he’s standing.

During the first few scrimmages (where different teams practice against each other) I thought I’d leave Das Beano to himself. I would be impressed to witness how much he matured over the past year and to observe how he magically transformed into an independent 15 year-old with no hint of Asperger’s, ADHD or OCD.

Instead, I watched him wander aimlessly around the sideline, bite his hand, yawn and plop himself on the bench. Earlier in the year, I had the opportunity to ask Dr. Temple Grandin how I should handle this very situation. Her advice was to instruct him afterward and discuss things he did right and things to be improved. Going on to the sideline, near him and instructing on the spot would only embarrass him.

However, in the past couple of weeks, watching from the stands, my instincts told me otherwise. (Yeah – I know, there have been a time or two when my instincts were really wrong.) As much as I admire and respect Dr. G. and think her western-wear rocks, I, for the time being, have made a conscious decision to, respectfully, not follow her advice.

There is a time to teach and I time to stand by. Right now, class is in session. Someone once said, and I’m paraphrasing, being the parent of a special needs child means you have to let go of your embarrassment and inhibitions, step in and do what has to be done. Be there. Be engaged. This isn’t a job for coaches or trainers – they’re busy attending to the game. Yet, each game presents wonderful learning opportunities.

I, for the life of me, will not let these golden and fleeting opportunities pass by The Bean. His job requires him to tend to tasks and interact with players. He needs to constantly water the players, keep his bottles full and listen for the long whistle signaling a timeout. With guidance, he does these, all at the same time. With immediate direction, he becomes (important concept for TheBean) engaged. Without, he falls to a zoned-out state.

Along with keeping him engaged, he needs to be shown how to be engaged. Walking up to a player who just ran off the field and asking “Hey, would you like some water?” really doesn’t cut it on the sideline. “Hold a bottle in the air and quickly shout ‘water!’ If they want it, they’ll take it.” Of course after the game, we discuss the difference between a sideline environment and the classroom. I can see it now, The Bean walking in Algebra, holding his assignment in the air and shouting “Homework!”

For the record, The Bean does not want me on the sideline. He’d rather have me roped and tied to a kitchen chair while he goes off to a game. I know there is a fine line between what he wants and what he needs and I’m trying not to stomp all over it. Right now, I’m hoping a steady dose of direction with something he loves when he’s 15 will pay off when he’s 16, 18, 35 and 65. I just hope I’m right.

Popularity, Girlfriends and Senior Year by Elise

2010-09-06T18:27:00.000-07:00

Popularity, Girlfriends and Senior Year
Today is the last day of summer vacation for highschoolboy (HSB). He has had a very quiet few months. He spent the summer with a little volunteering, a little work on the college application essay, a lot of down time and a lot of regrouping. He seems happier and more content than he did at the end of school last year. That is definitely a good thing.

We asked him whether he was excited to be going into his senior year of school. We know that for him change and transitions are really hard. We expected him to tell us that he was afraid of the year to come. We expected him to tell us that he wasn’t so sure about college. We expected him to tell us that he didn’t want to do anymore work and that he didn’t really care what physics was about. We expected him to tell us that he would rather be playing video games. But what we got was something none of us expected.

HSB isn’t looking forward to his senior year in school, because he is not a popular kid. In his words a school “celebrity.” Go figure? We definitely didn’t think that would have been a reason. Without a doubt, when he said that my immediate response was to feel so very bad for him. Hubby tried to make himself feel better by recognizing that at least the kids aren’t mean to him. This for the most part is very true, the kids don’t’ harass him or pick on him at all. I am not sure though just how much they do talk to him. Of course, we also did come up with a plan to help the situation.

First, I want to say that he had never spoken that he wanted to be popular. We knew that he wanted a girlfriend; he definitely likes girls and their company. But felt that his friendship skills were poor and needed to be worked on before he got to the all important girlfriend stage. So we never had the therapist talk to him about how to find a girlfriend. We had everyone work on the skills necessary to just be someone’s friend. We tried to emphasize to him that in order to be a boyfriend you need to know how to be a friend first. He never seemed to mind that idea. But the truth be told maybe while listening he just thought that “girlfriend” was something out of his reach for the moment.

I suppose in many respects it was my mothering instinct that led to the conclusion that I wanted. Not because I don’t want him to have a female companion, I am hoping that that happens, believe you me, but that I didn’t think the girls at school saw him as boyfriend material. He is still seen as the sweet little boy with problems that they have all known since kindergarten. I really didn’t want him hurt emotionally. Yes I know that it comes with the territory of “love” that there will be pain and growth in how to handle relationships. Yet, I was reticent because he has been so vulnerable and fragile in general recently. I didn’t want him to be rejected by a “girlfriend” right after he was rejected by his best friend since third grade. Over protective you say, most probably…

Honestly, at the moment no one, not a therapist, a tutor, a teacher, a social skills counselor actually thinks of the word “girlfriend” in relation to HSB. Everyone thinks of it in relation to collegeman however. It was really telling that when I took HSB to the Sylvan Learning Center near us, which the boys had gone to for years, the math tutor actually told me, not even having seen collegeman for years now, that the one thing he needed was a girlfriend. Truthfully, I agreed with her. But collegeman is so focused on his work that he can’t seem to conjoin two ideas at once. That is something we are working on with collegeman, the social piece at school. The college coaches we hired are making sure that he interacts during his down time and that he doesn’t just spend all his time in the library. Yes, for him we need to figure out a little more of a plan and figure out a way to make social discourse and interaction something that he wants to do. Not for employment purposes but for human purposes.

But back to HSB and his desire to be popular. I did meet with the special education team before school started and the first thing that I mentioned was this new found openness about wanting to be popular. They were as surprised as we were. But as we were it was also mixed with a sense that this was a good thing. HSB wanting to have friends, make friends and be part of a bigger crowd of people, is a step in the right direction. However, they also know that they would be charged with helping him learn how to accomplish this goal. They didn’t really seem to mind at all. They were thrilled at HSB’s growth emotionally, very pleased as a matter of fact.

Of course, we will have to get together to make sure that everything is going well and that they are actually making sure that the paras are helping him learn the social ropes. He will have large blocks of free time this year because he is a senior and I told them that I don’t want him spending hours playing in the computer lab. They need to find a way to get him into the lounge area, and to help him eat lunch in the cafeteria. Unfortunately, eating in the cafeteria may be a challenge in and of itself, because the noise in the cafeteria can be deafening. I also told them that I resubmitted the paperwork for him to be a part of the bowling team too. Joining a more interactive club may be a good idea too. Last year he joined the film club where they just sat and watched DVDs. Not really very social. Maybe back to a charity club where they have to think, talk and decide how to help others is on the agenda.

Another thing that I did was have his therapist help him try to figure out how he could interact with more people. They did come up with the idea that he would sit in the middle of the classroom rather than the outskirts of the seating area so he would have more opportunity to talk to people if the occasion arose. However, when I asked HSB about that idea, he did say that the seats are assigned and I am not sure that they are not going to sit him where he used to be for all these years. He tends to be seated near the door, which means there are fewer people to talk to. This seating arrangement affords him an easy out from the classroom if he gets overwhelmed without disturbing everyone else. However, we will see what happens. I have been trying to get a hold of his case manager to tell her, but being a holiday weekend she is definitely engaged elsewhere. (As she has a right to be.)

There is a senior BBQ today, but he doesn’t want to go. I know it is because he has no one to hang out with and that he doesn’t want to be seen with a “babysitter.” Hubby thought maybe he could go and stay in the background but HSB really wanted no part of that. The school did offer a para for the event, but I think HSB just wants to stay home. We told him he could go paint the cafeteria windows with all the senior names just like all the other seniors will be doing, it is a ritual they have here, but no, he didn’t want to go. Interestingly he doesn’t want to be there for the opening bell either. His class starts with bell two. He doesn’t want to go to the opening day assembly and have the official senior greeting for the year. That’s where the senior girls stand outside the school with signs that ask you to” honk your horn for the seniors.” Nope not interested he said.

I do think he is reticent about starting his senior year for more reasons than a lack of popularity. The transitions, the challenges and the schoolwork he doesn’t want to do is definitely on his mind. Putting off the inevitable is something he does really well too. He hasn’t organized his binders, folders or draws for school either. Keeps telling us that he will do it the next day. Finally HSB has realized there is no next day and that he did ask hubby to help him today. So maybe he is working himself up to the idea that whether he likes it or not, life is coming down the parkway.

On that note too HSB has decided that driving may not be a bad thing. He did receive his learner’s permit two weeks ago and has been going with hubby to go-karting. He got to drive the “permitted” go-kart track last time and he had a really good time. Seeing that he could actually control the go-kart has made him interested to see what would happen if he was behind the wheel of a car. He condescended to turn hubby’s car on in the driveway yesterday. He is also going to go with Hubby to an empty parking lot and try to drive the car for the first time today.

Finally in getting prepared for the beginning of the school year, HSB also wants to go back to Hubby-HSB official McDonald’s weekly school year breakfast starting tomorrow too. So we will see what we will see. Transitions, challenges, and a desire to be a teenager just like everyone else are coming our way. It’s going to be an interesting year to say the least.

Hold on to your hats….blast off.

Until next time,

Elise

Problems with Balance and coordination for an Autistic Child by Lorna d'Entremont

2010-08-25T08:45:00.001-07:00

Parents of children with Sensory Processing Disorder, or SPD, know very well that besides sight, sound, taste, touch, and smell there are other senses many forget. Depending on how you want to count it, there are between 14 and 20 different senses.

Two that I will talk about today are: vestibular and proprioceptive. Those last two senses have to do with balance and coordination.

Vestibular sense, or sense of balance or also known as sense of equilibrium, detects motion, gravity and provides us with our sense of balance. Our vestibular sense tells us which way is up, how our body is oriented in relation to up, and how our body is moving in space. The two items that cause this awareness are gravity and movement. The inner ear contains parts (the nonauditory labyrinth or vestibular organ) that are sensitive to acceleration in space, rotation, and orientation in the gravitational field.

A child diagnosed with an Autism disorder with a hypersensitive response to movement may refuse to participate in physical activities wishing only to watch from the sidelines. Hypersensitivity to movement and fear of movement are both indicators of a Vestibular Disorder.

To help an autistic child who in hypersensitive to movement, parents and caregivers can encourage much needed movement stimulation through play. Cushioning the child between two adults to give him security and then moving at various speeds will allow him/her to experience movement.

On the other side of the coin, we have children who are hypo-sensitive to movement and cannot get enough. Children who excessively crave movement and appear never to get dizzy, also may have disorders of the vestibular system. These children crave and need the vestibular stimulation that movement provides. They become the hyperactive, rough players putting themselves often in risky situations by bumping into things, climbing, spinning, swinging for long periods of time.

For these movement seekers, the best way is to allow and encourage movement but in a safe environment. Have a ‘safe room’ to move, jump, spin, climb, swing… There are many toys and wearable items that are commercially available for vestibular stimulation but the important thing is to ensure your child’s safety.

Proprioceptive sense or the kinesthetic sense provides the brain with information to be able to sense the position, location, orientation and movement of the body and its parts. It is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other.

Neurologists test this sense by telling patients to close their eyes and touch the tip of a finger to their nose. Proprioception is what allows someone to learn to walk in complete darkness without losing balance. The proprioception "receptors" are located within our muscles, joints, ligaments, tendons, and connective tissues.

If this proprioceptive sense is not receiving or interpreting input correctly, then it is referred to as Proprioceptive Dysfunction.

As a result of proprioceptive dysfunction, some children are under responsive to proprioceptive input. Children with difficulties may perform slowly, or not be able to perform at all, when asked to follow multi-stepped directions. These children may sit still for hours if left alone. To make them more alert, caregivers must aid them to move by engaging them in pushing, pulling and stretching and contracting their muscles.

Some children with Proprioceptive Dysfunction, will be unable to stand on one foot and have difficulty with any balancing tasks. Others might have difficulty learning to go up and down stairs. You will see difficulties in activities such as skating, running, riding a bike, skipping or hitting a ball.

The child who is a Sensory Seeker is the child who might crack his knuckles, bite his nails until they bleed, chew on his fingers, chew on erasers, pencils, clothing collars, sleeves, or other inappropriate objects that bring into question safety and hygiene. This is where our Kid Companions step in as an Occupational Therapist recommended oral-motor tool. Your sensitive child can chew safely, discreetly and their fashionable shapes let your child blend in with his peers.

In an earlier post I wrote about a Sensory Diet. The professional, who will work with parents to plan a Sensory Diet for their Autistic children who need sensory input, will advise them of their child’s individual needs, help them plan activities and will recommend tools/toys that will benefit their child. So you have an idea of such products, I have shown you four.

Back to School: Transition and Perspective by Elise

2010-08-01T18:48:00.000-07:00

August has commenced and it is time for the annual return to school marathon and triathlon. For some of us school is but a few weeks away while others of us have until after Labor Day to send our children back to the wonderful world of academia. But either way we need to begin to prepare our children and ourselves for the transition back into the fold of reading, ‘riting and ‘rithmetic. By the way, this counts if you homeschool as well. It is always about schedule and change.

So let’s talk about transitioning your child from the calm and stressless time of summer to the world of academic performance and social pragmatic functioning. I have to be honest even the idea of transitioning HSB right now sends chills down my spine. He had had such a horrendous year last year that I am really worried about how he will do this fall. He has been very happy just helping out around the house, volunteering at ECAD, the dog service training organization and going to the tutor to work on writing and his college application essay. The one thing HSB did not have this summer was peer group interaction. I know this was not a good thing. I know that he needed to work on his social skills but HSB just flatly refused to want to go and do anything. Truth be told, I couldn’t really find anything that was good for him.

Yes, the problem that I am faced with is that for HSB there are no art classes, computer classes and sports classes that he could join. He is flatly just too old. Most of his peers either had jobs as camp counselors or in reality since those jobs were taken by college students and even out of work teachers, his peers took college courses to prepare for school or to put down on their college applications that they had tried out the college experience. HSB could not do that. HSB still needs the support and while I don’t think that the local college would have objected to me sending someone for HSB, I am not sure that more academics would have been a positive thing for him this summer. He had had enough work and needed time to just do nothing. Another thing that a lot of HSB”s peers do over the summer is go on those trips either biking across Europe or the USA or going down to some underdeveloped nation and helping build homes and schools for 6 weeks.

Could you just see HSB doing that? Apart from the fact that we would have had to send someone with him for support (financially terribly prohibitive) the entire episode would have been a transitional nightmare. Heck the boy is still mad at me for going gluten free even though he says he likes the Quinoa based pasta that I found to eat. Can you imagine if I took him out of his comfort zone, his computer, his video games and his routine and told him now go and have a good time? Yeah that would have gone really well.

So here we are stuck in adolescent aspie world, with not much for him to do. I think this is when you really see the difference at times with his neurotypical peers. When the school district had had the summer school program it wasn’t really a glaring issue. Collegeman and HSB had taken advantage of it every summer and it went well (except for the year we had to threaten to sue the art teacher who tried to use HSB as a weapon in union negotiations with the school district. That was a fun summer-oh boy oh boy). Yes, I tried to sign HSB up for driving lessons through the school but ended up withdrawing him because the teacher was nasty, mean, and quite frankly a bully towards HSB in front of over 40 of his peers. He had not wanted to learn to drive anyway and still has not taken his learner’s permit test so driving really isn’t something he is dying to do. I think his interest in driving lessons was the very pretty voluptuous girl who sat across from him during the first class who didn’t bother to wear a bra. But being that this was an unnecessary class there was no reason to subject HSB to that moron of an old asshole.

So as we get closer to the beginning of the school year, we are starting to plan what to do over the next few weeks. Hubby has blocked off the week before collegeman goes back to school so we can all have another staycation like last year. I think camps are ending now here in the Northeast and everyone has basically cleared out of town. Again we are the few that are left. Everyone here goes to Martha’s Vineyard or the Jersey Shore. Some even go up to Lake George to the resorts up north and many go to their home in the Hamptons. It’s a tough life for some, but they just have to live it. We stay put. It is something we have done for years and truthfully we really like it.

We are in our old familiar haunts and are planning a few side trips for the days. We are going to try to go to a water park again. Last year we ended up going just when everyone else on the East coast decided to go and it didn’t work out so well, except for the fact that the boys rolled with the punches and took everything in stride. I guess that in and of itself was worth the aggravation. Then there were the trips into the museums which we will not do again (in fact I am not sure the boys will ever go to a museum ever again, including the planetarium. It is definitely not their thing.), and the skeet shooting trip that collegeman and hubby took. We just heard about a State park that allows for skeet, trap and pistol, it’s nearby and we are going to look into that.

So we are planning a staycation and will use that as a countdown until the beginning of the school year. It seems that collegeman will not have as many issues this fall as HSB, but you never know so we are going to take each day as it comes. There is a new Director of Disabilities at collegeman’s school and we will see if she will give us a hard time about how we support collegeman. I can’t even get a hold of her until the middle of August. But I am going to plan for his fall with the support we know he needs and then if she decides she knows better than everyone else, denying him the accommodations he has always had, we will have to call in the big legal guns. We will also have to see if she is the type to decide that parents are obsolete in raising their children once the child is of legal age. We may have to set her straight with that too. You know my old motto, plan for the worse and hope for the best. Get your ducks in a row and have your lawyer on speed dial.

Another event that is important for transition is to make sure that there are supplies in the house and the requisite books have been bought. Collegeman will go on Amazon once again and order his books at least a week before school starts, so he will have an idea of what will be expected this fall from an academic point of view. HSB and collegeman will pick out an agenda and notebooks that they want. Organize their class draws and folders and clean out their backpacks. Truthfully collegeman still has one more week left of his summer course so we are not even thinking of doing any proactive fall transition activities yet, but we will do them when the time comes.

We will hopefully have all the meds worked out for HSB, within the month so that would be a good thing. The psychiatrist said that collegeman’s meds were ok for now unless something changed, so that at least was a bit of a relief. HSB we are working on solving the focusing and sadness issue. (Just as an aside, VERY IMPORTANT- too much adderall, I don’t know if this is the same for every stimulant, can cause depression. The doctor said that that was HSB’s problem not the SSRI. We have cut back on the adderall and are adding in a nonstimulant focusing med, so we will see if it works. But DON’T do this on your own, talk to your doctor and have them monitor what happens with your child.)

One more thing that I do do for HSB is contact his guidance counselor a week before school starts to get an idea of what his first day schedule will look like. We get the room numbers and go on a treasure hunt for the rooms at the high school. Ok you say by now he should know his way around, but it is helpful that he get his bearings and know where he is supposed to go and maybe even run into a teacher or two. Every year is a new year no matter how many years your child has been at the school. Either their classroom is in an unfamiliar area of the school, or their locker is different and the combination changes. Their teacher is always different so you may want to see if you can have your child meet the new teacher, and even find out if they know a child or two in the class to make the transition more comfortable.

If your child is entering middle or highschool it is important that you take them on tours and go on their own classroom treasure hunt. You should meet with the special ed teacher and figure out the best and most productive way for your child to keep their belongings together. Lockers are very important and there are wonderful organizers for lockers that I found helped a great deal. A plan should be in place at the school that would make your child’s transition easier. It should have been discussed before the end of last year and if it wasn’t don’t wait for something to happen, get to the school as soon as the teachers are back and talk to them about what you all can do together to make the transition easier. I have found that most teachers love it when the parents are involved and love the idea that you want to work with them on any issues. Yes I have come across the idiot teacher who wanted the parents out of the way too, and in middle school to boot, but that really was a rare event.

Something that I have found that truly helped my children when they were younger was time spent on the playground at school. Recess can be overwhelming for any child, but for a child on the autism spectrum the unwritten rules and haphazard play is very daunting for them. Go to the playground and let your child get used to what they can do on the playground. Talk to them about the different activities that they can engage in and the different games they can play. Talk to the school about assigning a “lunch and play buddy” for your child so they have someone who will help them, especially if there is no adult assigned to your child as a para during recess. I know this is the time that most of our children need an overwhelming amount of support and the schools don’t assign anyone because there is usually a playground monitor who they say is sufficient. I have news for the schools, the social skills learned on the playground in school has more impact on a person’s ability to function well in their adult world than any amount of math facts and Harry Potter novels read.

Also if your child is just starting school make sure they go on that “yellow school bus” ride that is offered to the kindergarteners. I sent HSB and luckily the PTA mom in charge knew him from swimming lessons, she was his teacher, so it went well. But it can be an overwhelming and scary thing to get on that huge bus with a lot of older children. Heck I remember going on a field trip with HSB when he was in first grade and we went on the yellow school bus. I can’t tell you how my stomach was in knots the entire time. I hated the damn school bus and couldn’t wait for the day I wouldn’t have to ride in one anymore. HSB couldn’t handle the social aspect of neither the bus nor the noise. He had been bullied on the bus to the point that they put a monitor on the bus, (It actually happened only once, I called and the school district complied. I think the bullies were well known already to the district, I am sure it wasn’t just about HSB; maybe what happened with HSB was the straw that broke the proverbial camel’s back. )But thank God for video cameras which showed who the culprits were, however, eventually I came to the conclusion that I had to take him back and forth to school. So I play mommy-taxi everyday, which is fine. Its’ why I do what I do, it’s why we all do what we do, to be there for our children for any and everything they need.

So as we transition into the school year remember, our children need to treasure hunt for their new rooms, be involved in getting their supplies, practice the school bus ride (or mommy-taxi ride), and go on the playground to work through some ideas on what to do during this free time. You need to meet with the teachers, go over the IEP and Behavioral Intervention Plan, make sure they understand that you are there and expect to be part of the process. Explain your child to the teacher and the para to make sure they truly understand who your child is and what they need and what they can do and how bright our children happen to be. Make sure that you show them your child’s strengths, not just their weaknesses.

Now and this is very very important: enjoy those last few weeks of summer vacation as a family. Go on a staycation. Get to a water park, a museum and go have fun. After all, summer is about fun, family, ice cream, beaches, pools and barbecues. But most of all, the summer is the time that great memories are formed and it is these memories that guide us and help shape our children into who they will eventually become.

Our first Guest Blogger Eric " Walking in My Shoes" Journey of Acceptance

2010-07-22T08:51:00.000-07:00

Each and everyone have a different experience of how they live with someone who is autistic.

My personal experience with my son has been humbling. But maybe that’s just me.

I remember when my son was born, my heart exploded, and I welcomed him with innocent eyes, arms and heart. It was magic. I was completely open to him and in heaven whether he would do or not do anything. I had the most precious thing in the world. I was ready to do anything for that poor little innocent and fragile little baby…

I think acceptance was my initial way with him, and is still is today, except there were few (big) adjustments in between. As a typical parent, I started wondering how my child would grow up. I had some expectations about what my son should ‘normally’ be able to do. Though, I was always conscious that all children grow at their own pace, and I quickly avoided the trap of comparing kids. My wife who was with my son 24/7 got more concerned than I was… she was also more regularly confronted with my son’s challenges and thus it became hers. So little by little I started believing that something may be ‘wrong’ with him. I always thought that I could never have such thoughts of my son. I think I’ve been against that feeling, even as it was clearly becoming obvious our son was not doing well.

Then I started getting into the “how can we fix him?” and I got onto the web and search for ‘what’ my son could have and what could be done. Then I came across all sorts of things that can be done, but somehow I failed to read, (or believe) than my son could be autistic and that he would still be until the rest of his life… When I realized that my son may be autistic, I wondered what we were going do about ‘it’? This comes after months, years of intense meltdowns, quirks, increases of challenges of all sorts.

Aparte: Notice the progress since birth where I accepted my baby has god-sent, into ‘ah my son has a problem’ and then, ‘ok let’s find out about it and let’s fix it’. We live in a society who has zero tolerance for non-normal, illnesses, weaknesses. Any physical or mental discomforts need to be treated and resolved. It’s not surprising to have parents who want to fix their children’s ‘out-of-the-line’ conditions… but that will be for another post.

But then, I got to understand his condition… And I guess I intuitively knew that was an important thing to do, to understand autism from inside out. I met some autistic people on Twitter, who literally opened my eyes. Among them, I’ll be eternally thankful to a woman who was open to talk to me about how it was for her. During an exchange, she told me about autism, as being part of who she was, and that by taking that away, she wouldn’t be her anymore (or something to that extend).

Wow. These words really hit me. It was a very strong moment, a turning point, an epiphany. It felt like I had been hit by a storm and standing naked on a cliff facing the wide horizon (of humanity) as the sun was shining through the clouds again. It was humbling, but also luminous, warm, and as bright as it can be, surreal (except I was still sitting at my computer, lol). I felt compassion and hope as I could now see the light. It completely knocked me off of the let’s fix ‘this’ approach. After all, it wasn’t an illness or a problem we had to solve, it was my own son’s whole being we were talking about. I put me in respect of the complexity and legitimacy of being human. There came back the full acceptance of the being and becoming of my son.

It wasn’t just these words who changed my mind set. Her words reminded me of the humanist and phenomenology class I adored when I was in graduate school. The humanist approach has always been part of my philosophy. So, I think this approach, this woman’s words and my son’s condition clicked and created a coherence so powerful, that it woke me up.

It was like a deep realization that how each of us go through a journey, and that all our being, physical and psychological is part of who we are, no matter what our challenges are. It meant that there is a need of humility & acceptance of people in order to be able to help them.

Then naturally, when you open up to how it’s like in some else’s shoes, you are receptive, you can discover the unexpected, the challenges but also see the gifts. I discovered my son had sensory processing issues. Check this video of sensory overload, as an example:

Sensory overload Stimulation by WeirdGirlCyndi

Whether it’s exactly like that or not doesn’t matter. Whether it’s the same for few or many people doesn’t matter either. This experience of sensory overload helps us being aware of how it can be to be a human being. This type of example is truly is revealing of the complexity of humans, and truly humbling in regards of what humans need to function.

I realized that we take far too much for granted. Then, I started to relax about what my child could or could not do, because I had sympathy for his struggles, and more over I started looking at the world through his eyes. It truly helped me understand our son’s challenges and how we could help him.

Acceptance in the way I presented it is a fundamental step towards building a respectful and unique approach about his way of being. Then, only then, we were able to provide adequate support to help his development.

Generally speaking, it can be hard for people to understand how it can be for others. We all have our own point of reference. Beyond that, we can only assume how it is for others. People spontaneously project their own standards onto others, and most of the time, it works out just fine. Life is tough, and there are so many people out there who have no clue about how different it can be to be human, and they can be really obnoxious. It’s (too) easy to be insensitive with an autistic person…

Eric can be found on Twitter as @MyAutisticSon and his blog can be read at http://www.walkinginmyshoes.org/2010/07/journey-of-acceptance/

A letter from First Lady Michelle Obama in response to our request for information about Child Obesity

2010-07-15T13:53:00.000-07:00

Hot Time Summer In The City - By Elise

2010-07-12T08:11:00.001-07:00

The summer is half over and there are still six weeks of summer vacation. Collegeman made a very half-hearted attempt to find a job. Not that I think one would have been forthcoming around here. There are so many adults out of work that normal jobs taken by teens every summer, if they still exist, then they have been usurped by adults with skill sets and experience and quite frankly bills to pay and a family to feed. I can’t resent that no one wanted to even talk to collegeman. Truthfully, it wasn’t even about the autism. He just sent in resumes. It really was about what is happening in the economy. Why hire an unproven kid, when you could hire someone you know will actually show up because they have so many obligations to meet? It is just what it is. So we decided, much to his chagrin, I might add, that collegeman had to take a class during the second summer session at college.

I have to tell you he was really having a good time doing the teenage thing this summer. I realized that there had never been any time in his life, except for the few weeks between semesters in the winter that collegeman had no school or work obligations. Last summer he did have that job at the college library and it went fairly well. But it was an obligation. Now he did handle it well and his boss thought he did a good job. But there was no down time and no time to hang out. So like I said, this past few weeks, actually two months, have been quite the happy time for collegeman. Sleeping late, hanging out, eating (he did put on weight and he is now on a little diet), earning money through chores and basically doing nothing of any consequence. He was also really really happy.

I think at this juncture, we are going to have to work out a methodology that he can be happy, content and pleased about his world while he pursues his future too. Hopefully all the people who are in place can help collegeman figure out how he can do that. Hubby thinks one day he may just have a catharsis. I am of the mind that collegeman needs a little push in that direction. He may need a little help in reaching his nirvana, so to speak. I think we are going to have to start with the basic idea that you can do more than one thing at a time.

So far we are working on him allowing himself to go to the movies when he is studying. Also the therapist is talking to him about friends. To the extent that he doesn’t seem to understand the value of friends so much as he understand the need to make connections for future success, we are going to go with that. But this morning I did have an interesting quick talk with him about friends. He said that we are his parents and not his “friends.” That he was right, a friend is someone more your own age who you can commiserate with, I also did add that it was OK for him to go to school and have a friend. So let’s see, this is our goal for the present. Actually, I know, it seems that it’s been our goal for him for awhile, but at least he is talking about it and open to the possibility. I hope, he finally does realize that it is ok to have a little fun in life with people your own age.

Now as far as HSB is concerned, I regaled everyone with the fiasco that was the driver’s education orientation. It is for the best. HSB has not even studied for the learner’s permit test yet. Hubby found tests on line, that could help him study, but I truly think that HSB isn’t all that interested anyway. I know he is scared and very reticent about driving. I also know that once he does it and sees that he is capable it will be just fine. But he is conveniently taking his time studying and preparing for the test. Honestly, between you and me, until he has made up his mind that this is really something he should do, I am not so sure it’s a good idea to put him behind the wheel of a car anyway. So I am not losing any sleep over him not being out on the road right now.

I’ll tell you something else too; we are doing a medicine check for him over the summer as well. We were able to get an appointment with a well known adolescent psychiatrist in the area and we are playing with both the focusing meds and the anti-anxiety meds. So far his anxiety meds have been decreased and he is happier. The focusing meds also have been pulled back, but he is a little ditsier. Interestingly the doctor explained to me that with focusing and the autistic brain they have found that a stimulant alone doesn’t usually do it. There should be another drug, probably a non-stimulant added to the mix. He did give me a list of three meds, two of which HSB had been on for other reasons at one time or the other. They so did not work. It’s like I have said, watch their reaction to the meds. There are some rare side effects and your child could be the statistic. It can be dangerous. Any doctor who tells you to keep trying once there is a negative reaction; you need to get rid of (had that happen with the boys too). Luckily this doctor understood that we have only one more drug to try. So we will wait and see what happens once the anti-anxiety meds are taken care of. As he said, you change only one med at a time, so you know to what and why there is a reaction.

Alright but then what do we do with HSB for the summer? So far he is helping with chores. Now that collegeman has started his class,too preoccupied to do chores, there are chores for HSB to do and earn cash for those much prized video games. Not such a terrible thing that he has to earn something that he wants. He can learn that not everything comes to you because you want it and sometimes, (GASP) you can’t get it just because you want it. You have to wait to have the money. Instant gratification is a real curse for this generation. I think we hurt our children because of it, all our children autistic and NT alike.

Then HSB also has to study the driver’s manual and start his college essay. I have found that as long as he has a schedule to follow he is very happy and that we limit the time on the computer and on the video games. He also has to exercise and after his cardio he has to do an exercise DVD involving free wieghts or ab exercises. But I think in reality, as I told the doctor, what has made him the happiest is that he is scheduled and busy. He needs to know that he has something to do. I have now also started taking him on errands with me when I can and make him come do even the most mundane chore, like grocery shopping. Besides the fact that it is a good life skill, HSB needs to leave the house and get out into the world. It is so easy for teens with aspergers to sequester themselves in the house and then decide that they don’t need to leave anymore. (By the way, this is very different than being agoraphobic.)

What I had been told and I had started to see it with both boys, is that teens with aspergers will tend to ensconce themselves at home because it is easier. Being a teen is so difficult to begin with, now add the social issues associated with aspergers and the child is just overwhelmed. The psychiatrist was talking to me about how that is exactly what happened with HSB this past year. Having trouble academically, losing his best friend, not having an outlet once bowling stopped and the knowledge about the upcoming transition out of high school into college all added to his feeling so very overwhelmed.

So I think it’s not a bad thing that HSB has an easier summer. I just wish I could find an art class or something fun that he could do and be out and among kids his own age. Unfortunately if you look around, most of the kids his age are not even here. They are still going on excursions, whether a bike trip across the US or one of the charitable trips where you build homes in Nicaragua. Some are camp counselors, but those tend to be college age students and even graduate school students. Heck some counselors are even teachers.

Actually we did work it out that HSB would volunteer one day a week at East Coast Assistance Dogs. He is helping input into a data base about the dogs and even got to learn how to start to train the puppies. He particularly was attached to a little 10 week old golden lab named, Blondie. He learned how to bend down to call her, get her to sit and even the proper way to pet a service dog. He said after awhile he was on cuteness overload. Oh yeah, collegeman is also volunteering there at the same time. Of course collegeman is obsessed with getting the data input done because that is a “real” job, but we make him stop and help with the dogs too. Nice and wonderful people at ECAD. Since I am staying with the boys to help with the social interaction for HSB, they have promised to find something productive for me to do as well.

So the rest of the summer seems to be set, so far anyway. Collegeman is studying and volunteering. HSB is delaying taking the learner’s permit test, helping with chores and volunteering. Even I am getting into the act with the dogs. But I think what is the most important aspect of how the rest of the summer is going to go has a lot to do with the fact that there needs to be a schedule. In fact the more lazy and hot the day, the more scheduled everything has to be. Remember, the more tired you, the parent become, the more scheduled everything has to be.

While summer is supposed to be the relaxing time for everyone. It is when the world slows down because of the heat and everyone goes on vacation or has a staycation, that it is the hardest time for us, the parents of special needs kids. If your child is in ESY then some of the time is scheduled but that also only lasts for a few weeks. Here it was 6 weeks, but that usually left the month of August to figure out what to do with your child. Even with special needs children at home, there should be a little of a slowdown. Do take it easier and do make time for when you can put your feet up too. Whether it’s that cup of coffee at 5 in the morning, out on the porch, before the kids wake up or that glass of wine or bottle of beer after 8 pm when they have all gone to sleep (oh yeah, some of us do both...woohoo). Don’t forget that an overstressed parent isn’t good for your children and it certainly isn’t good for you. The dog days of August are approaching, remember those schedules and truly batten down the hatches…

Here’s an oldie but a goodie when it comes to summer music:

Or maybe this is your speed:

On that note don't forget about that wonderful autism support program Surfer's Healing. They may be coming to a town near you. Check it out.

Better yet, this is what used to drive parents crazy:

Until next time,

Trying to stay cool,

Elise

An Amazing Six Months - Who Knew?

2010-07-12T08:09:00.001-07:00

Who knew?

Who knew that four women and one man from different parts of the continent would come together and create a forum that has become a staple in the special needs community?

Who knew the path this journey would take us on?

Who knew the amazing parents, grandparents and educators we would meet on this incredible internet highway?

Who knew the outstanding, award winning and renowned experts that would honor us with their appearances?

Who knew?

It is hard to believe it has only been six months since the launch of The Coffee Klatch. Just the sheer volume of expert guests alone is astounding. The vast array of topics and disorders covered is equally staggering.

This forum was created for you, the special needs parent. It is my hope and goal to provide the best possible information on any particular disorder either emotional or physical.

I am proud to say, I truly feel we have.

Along the way incredible friendships and invaluable bonds have been developed. We are a community. A community that stands together, shoulder to shoulder, pushing forward to make this world a little better for these special children.

It has been a privilege to be a part of such an incredible collaboration.

It has been an amazing six months ... And there is much more to come.

Who knew?

Very grateful

Marianne

Don't yell just embrace your inner Bitch - Elise Butowsky

2010-07-03T19:13:00.001-07:00

Don't Yell Just Embrace Your Inner Bitch
School is finally out for summer, but our jobs as advocates is never over. I have reposted this blog from January 16,2010, just so we remember to exercise our mommy/daddy muscles.You know muscle memory is a wonderful thing. Once learned it is very easy to remember that karate form (beautiful isn't it!) BTW both the boys and I actually studied this from of Kenpo for years, but never did get to this level. Restarting our studies is something I have wanted to do for years.Unfortunately there are no Parker Kenpo schools in my area anymore. Maybe someday.

We have all heard the stories. That mother who screams and yells at their child’s IEP meeting. The one who every professional talks about, that ”crazy” mother who just won’t listen when they talk about her child. Yeah, that “crazy” mother, who they delegitimize because she got frustrated and yelled at them. You know the one that thinks she knows better than them about her child. I have talked about the condescension of the professionals, it is a pet peeve of mine. Personally there are times I think that some of us would probably like to punch out these professionals so they are lucky if all we do is yell, but I digress. So what do you do though if you are faced with a problematic situation? How to do you channel your frustrations? How do you get for your child what they need? I call it embracing your “inner bitch.”

Throughout our lives we have been taught to be nice. To play nice. To talk nice. To be pleasant and friendly. It wasn’t until I was in my forties that I learned a good lesson. Who cares what others think? You need to do what you need to do for yours. That is what I call “embracing your inner bitch.” Now I had always had that attitude, you might say, because the people in my little hamlet were none too happy when collegeman came in district and I didn’t care, but I learned to have that attitude with the professionals too, on the rare occasion that it was necessary.

Now this is a good thing. You use your frustration and your anger to embrace what you are going to need to do, but you do it in a way that is calm, intelligent and very thought-out. You leave the yelling and the kvetching and the breakdowns for home, facebook or twitter (as long as someone from your district isn’t following you on social media). So the question becomes how do you get what the children need without throwing a fit?

To start with, come in prepared-very prepared. Read the law books available from different law sites. I like Wrightslaw. Their books are succinct and to the point. They guide you through the process with wonderful examples. I also like their website. There is a lot of information available. Also go to your state education department, they should have guidelines for special education accommodations. In fact, in my state there is even a special section on autism. Check the federal government’s website. Remember an IEP is based on the Individual with Disabilities Education Act and a 504 plan is based on the Americans with Disabilities Act. Make sure you are well versed. Learn the lingo. Learn the difference in the two laws and how they apply to your children.

Next, get the medical information in order. Make sure you have a diagnosis letter with you and a letter outlining the supports the doctor recommends. Now this is not a guarantee but it is a good place to start. The schools do not have to take the recommendation into consideration, but it is good to come armed with something that shows you are serious. It is also good to have this information if you decide to go to a due process hearing. The school will know you are not coming alone and that you have back-up. (Doesn’t always work, but at least the school is on notice). If you had outside testing done, in addition to the testing done by the school, make sure that is with you too, and that it has been sent into the school before hand. Don’t let them use the excuse that they haven’t seen the testing, to delay helping your child. If you can work it out, it helps that the doctor or psychologist is there at the meeting or at the least the committee should call the outside doctor during the meeting. Even if they say it’s not necessary. I would insist strongly. (This is why the state regulations are very important to understand)

The next thing to know is what services are available in your school district. Your child is entitled to a free and appropriate public education (FAPE) in the least restrictive environment (LRE) in which they are making academic progress. This does not mean that they are getting As. Children get promoted to the next grade who get Cs as well. Also if they can function in a mainstream environment with support, like an aide, then they should be in the mainstream. That would be the LRE. However, if your child still cannot learn and still has meltdowns and still cannot function in a mainstream setting then it might be wise to seek some specialized program for them. Now you must, with a BIG MUST, understand the programs available in your state.

Here, in NY, the Education department has to certify any program. You are obligated to try to keep the child in state. We are very close to two other states with programs, so I am not talking residential placement, but for that you have to look instate as well first. Get a list of the appropriate programs and talk to the directors; go see the programs with and without your child. The school is also supposed to go view the programs. There is an application process that the school has to abide by for each school. Make sure that they do, request to be copied on all paperwork. In fact see if they will give you copies of the applications. Call the programs to make sure that everything is being sent the way it is supposed to. To quote Ronald Reagan, “Trust but verify.”

The last step is to prepare the IEP to fit the program that the child is entering. Make sure that the goals are realistic and that there is also some growth allowed too. Don’t let them make everything too easy. If the child reaches their goal, they don’t need services anymore, right? There should also not just be educational goals, but social and emotional goals as well and very very important, EXECUTIVE FUNCTIONING goals. These executive functioning issues are the bête noir of our children’s existence, I have remarked on that several times in the past. It sounds simple, but if the children don’t learn how to organize, and process for themselves, they will be lost in their lives.

So these are just a few things to remember in preparing for that IEP meeting. You don’t have to yell. You don’t have to threaten. You don’t have to knuckle under. What you do is learn, organize, and collaborate with those who work with your child. Unfortunately if all else fails sometimes we do have to go the route of hiring a lawyer. It is not pleasant, but it may be necessary. Hopefully for all of you it will never come to that. It didn’t for us, because I followed the above rules.

So put aside that societal contretemps of being the nice girl, whom everyone has to like. The one who has to please those around her to validate her self-worth. Use your intellect. Use your strength. Use your ability. Use your wisdom. Use your power. Embracing your “inner bitch” is a good thing. And if necessary you make sure they learn what the word “BITCH” really means.

Until next time,

Elise

Summer Fun: With Challenges by Jane Hotvedt

2010-06-23T06:20:00.000-07:00

Summer Fun : With Challenges

It's been a week since my last post. We're into the first week of summer vacation, and preparations for everybody's activities are on. Now, with a crew the size of ours, that's a lot of preparations. Sons 4, 5, & 6 won't be in baseball this year, as they missed the deadline to sign up (absent the day the registrations slips went home) and I don't have an extra $80 for late fees. Sometimes, life sucks. BUT, that doesn't mean we're doing nothing. Okay, the first week I let them OD on videogames (while requiring one hour a day outdoors), but then we're into really living.

We will be running our own daycamp, with fishing, hiking, swimming, and campfires on the agenda. Of course, tie-dye t-shirts and crafty things also await. (Burnt matchstick sculpture, anyone?) We do various sculptures, paintings, sand candles, etc. The kids all look forward to "Camp Hotvedt". Even the 20 year old.

But also, they need to keep their skills up. Especially my reluctant readers, sons 5 & 6. Honestly, the rest of my kids are reading zombies. They tune into their books as much and as readily as to tv or videogames. The reluctant readers, not so much. These two just lack patience, though son 5 this year had a great teacher who encouraged him and introduced him to "The Secrets of Droon" and "Diary of a Wimpy Kid". It really increased his motivation. He has AD/HD, so sitting still to read was an issue, but the rocking chair helps.

Son 6, though, with his "PDD-NOS" spent much of the school year spinning in the corner in front of the mirror on his carpet square. I think his teacher tried, but I also think he has a long way to go to be completely prepared for 1st grade. Before we moved to Dinkytown, we lived on the North Dakota border in a significantly larger (10 times larger) community where summer activities were in abundance, including reading classes that were phonics rather than sight-word oriented, and computer classes. Here, not so much. So I'll be trying to find something that sounds like and is fun and phonics based, as well as affordable. There are kidblogs we may look at to see if that will help encourage reading and writing, though you can't be sure all participants are posting at any given reading level.

Son 2, our graduate and new collegeman, is employed as son 3's PCA, a situation that serves everyone well, as son 2 gets money, work experience, and deadline meeting skills in a sheltered environment. We have discussed that interacting with mom as employer is different from mom as mother, in that, when he's on the clock, sass is wildly inappropriate and intolerable no matter how justified he thinks it is. That stating an objection respectfully the first time is required, and if that takes five minutes thought and re-visiting a topic, then it does. Hopefully, we will see growth in him and his responses that will prepare him for the world he will enter in the fall. If not, he'll have to seek employment in the public sector, which will likely not be nearly as forgiving.

Son 3 will be working on his Compass Learning online and gaining new skills and continuing to grow, as well as blogging here, to encourage literacy activities in a real world application.

We have a great garden this year, so we'll be taking time weeding, hoeing, harvesting, and (come fall) canning. As always, life is an adventure and a challenge to be met.

We're all in this together,

Jane

The Medication Rollercoaster - updated Summer Version

2010-06-20T14:54:00.000-07:00

Update: Summer adjustments – breaks and trials

Summer break is notoriously a time that parents wait to try to add or remove a medication their child is taking.

Starting up and weaning off medications is tough – very tough. The withdrawal can be severe and going slow is just as important when removing a medication as it is adding.

There are several schools of thought regarding summer breaks from medications.

Some psychiatrists believe that during the summer months medications for attention, mostly stimulants, can be given a break especially if weight loss has occurred. Others feel that it is like removing glasses from a child that needs them and feel that the stimulants often help with social interactions as well as academic performance and should therefore remain.

Dr Duncan McKinlay renowned psychologist, author of Nix your Tics and creator of the documentary Lifes’ a Twitch” feels that there is a risk to stopping a medication that is working as the child may not have the same positive reaction once restarted. I have heard this from several other professionals as well as parents who have found that the results once had are much lessened when reinstituted.

In the end, it is a parents choice. Being a parents choice does not mean that a child (if old enough and has the ability to self advocate) should not have some say as well. Before making any changes set up an appointment with your childs prescribing physician and discuss the pro’s and con’s. Let your child talk about how the medication makes him/her feel. What symptoms are the most problematic and if they feel improvement or impairment from the medication. As said, ultimately it is the parents decision but having your child participate and understand the changes will only make the rollercoaster ride easier for all. Another positive in having the child participate is that often times what may appear to be one behavior or emotion is really something else and in discussing the pro’s and con’s and targeting symptoms a clearer picture may emerge.

Once referred to as a “medication holiday” is another of the many stressors a parent medicating their child needs to consider carefully. Starting and stopping medications whether for summer break or any other reason is stressful for the child and the parent. The “Honeymoon” period is another term thrown around for the initial period of time that a medication is new to a child system and showing much improvement only to lessen in effect after a few months and there is a need to be adjusted. Keep in mind that an adjustment does not always mean an increase. For many kids, especially those on the spectrum often less is more. Many of these kids are micro-responders and have better results with an eigth of what other children may be able to tolerate.

Above I am speaking of medications that DO NOT stabilize mood as they should never, I repeat, NEVER be removed if a child is stabilized. I am talking about stimulants and other medications not used for depression or mood stability.

For the child who is not finding stability on their “medication cocktail” summer is often the time of trials. Many parents wait for summer, to try different medications so they can monitor closely and give the child time to adjust and go through the physical side effects. It, if an option, is a great idea.

As any parent who has been through the process of starting a medication knows, there are some rough days even with medications that eventually will help and whose side effects will abate. Nausea, lethargy, headaches, body aches, brain fog, cognitive dulling, agitation are just to name a few of the possible side effects that a child may have therefore not having to “perform” in a school setting during a trial is very advantageous.

If you are considering a medication change for your child, if you have been waiting for summer or any other school break, plan carefully. Consider a shorter summer camp or a later start. Give your child the best possible chance to adjust and function through the trial in hopes of giving them a better quality of life.

The title of this writing – “The Medication Rollercoaster” for the rest of this blog is deceiving.

Alternative approaches need to be planned and considered for summer and school breaks as well. Even natural, homeopathic or holistic approaches have side effects and can be draining on a child.

Many parents wait to try an alternative approach and wean their child off medications during the break. This is a great idea. The ten week period gives you enough time to wean off – incorporate vitamins or other therapeutic trials and have time to reintroduce the medications if it is not successful.

DO NOT UNDER ANY CIRCUMSTANCES add any herbal or homeopathic products to medications without speaking to your prescribing doctor and doing your OWN homework as well. Make sure to check your Drug Interaction Checker and check out all possible drug to herb or homeopathy interactions. They are significant and there are many.

Drug herb interaction checker

http://www.prohealth.com/library/showarticle.cfm?libid=13668

Drug – Vitamin depletion chart

http://www.pharmacistelink.com/naturalmedicine/pdfs/P4880x1204DrugChart.pdf

Wishing you all a safe – happy – healthy summer.

Below you will find the original writing with important information for any parent going for a ride on The Medication Rollercoaster……..

The Medication Rollercoaster – Original article

Let me start by saying I am not a doctor or a medical professional – I am a mom – a mom who has been there.

The decision to medicate your child is a very personal and heart wrenching one for many parents.

Whether the child has a mental illness or a physical one the stress and anxiety is the same.

The difference is in the stigma. Would you give your child insulin if diabetic, chemo for cancer, anticonvulsants for epilepsy?

Of course you would. What many people do not understand is that mental illness can be fatal. It can be severe and debilitating.

Does your child have a physical illness that requires medication? Do you lay awake at night worrying about the side effects?

Medicating a child is tough. It is draining and takes an informed, observant and stable parent to monitor.

I will discuss it all on The Coffee Klatch on Friday 2/26 and will provide resources to help you gain some control over the stress involved with medicating a child.

Here is an outline of the topics we will be discussing in detail on the show:

First thing any parent should do is google a drug interaction checker and bookmark it. I use http://www.drugs.com/drug_interactions.html

Second thing any parent should do – buy a journal – journal every day several times a day if needed

Write down the medication - generic or brand - dosage - dates increased or decreased - reactions and side effects

You are your childs medical historian – be accurate and be consistent – it is amazing what we forget under stress

With possible medication trial and errors it is important to have a record for yourself and the doctor

Do your homework – when discussing medications with your childs doctor ask about all possible side effects

Discuss titrating and weaning. Discuss test dosing. Discuss doctors availability in event of a problem

Discuss blood work prior and during medication use – discuss heart or other pre-required testing

Discuss what is considered an ample period of time to decide if the medication is helping

Discuss your feelings and anxieties about medicating the child – do not be intimidated or pressured

Discuss the fact that you will have to do some research on the medication and make an informed decision.

If your childs doctor is pressured for time let him know that you will come back to discuss the issue

If your childs doctor does not provide you with the time – get a new doctor.

Titrating – when starting a child on a medication here is the golden rule – START LOW AND GO SLOW

Make sure that the pill or capsule that your child is taking is not time released and can be split before breaking

If the pill is time released see if there is a standard form of the drug to use for a day or two as a test

Having a bad reaction to a med is horrible – better it be six hours than 24 or more

Purchase a pill splitter they can be found at any pharmacy

Purchase a weekly pill box – yup like the old ladies have – this will help you remember if you gave it or not

Always keep a few pills in your purse – in the event that you are out at medication time

Although many medications have therapeutic levels there is no harm in starting low and going slow to get there…..

That is of course unless there is an acute life threatening crisis

Weaning off medications – take it even slower especially with antidepressant meds. Never stop antidepressant meds suddenly if they have been on board for a while

Some children especially those with PDD and other autistic features tend to be micro-responders.

I have found many drs tell you to increase the meds during exacerbations, I have found the opposite.

Use your intuition and gut – a moms gut is worth more than people give it credit

During exacerbations Temple Grandin had observed that she needed to lower her medications instead of increase them

All meds are not made the same – be careful of switching to generics or even the other way around

Take note when you switch brands of meds for changes in your child.

Over the counter meds MUST be checked on the interaction checker – MUST – I have provided a resource on FB

Herbs MUST be checked with the interactions checker – also provided resource on FB (including teas)

Many drugs cause vitamin deficiencies – especially stimulants - do your homework

Even if a medication cocktail is inevitable always insist on starting one at a time to not confuse the issue

If your child is on a medication requiring blood level tests – GET THERE – do not say tomorrow

Blood level tests are required for a reason – to check organ functions or to ensure safe levels – GET THERE

Be careful not to let the child get dehydrated as the concentration of the drug can increase

Be careful of grapefruit and other known foods that interact with many drugs also resource provided on FB

If you have a spouse or a partner – get on the same page – if you cannot agree seek consultation.

Always start a new medication on a Saturday if possible so that you can observe the child

If the child needs to take medications at school make an appt with the school nurse – discuss your child

Ensure that the child will be in a comfortable environment and not be embarrassed or stigmatized.

Are the drugs unaffordable for your family – there are programs that can help with providing medications

Call the pharmaceutical company manufacturing the drug to ask for assistance to see if they have a program

Be very very careful with clinical trials – parents get desperate to help their children- remember they are trials.

Don’t be afraid or embarrassed to ask for help yourself. If you are feeling overwhelmed say so.

Seek out a support group – check out online forums – read parent reviews such as remedyfind.com or healthrevolution.com

Give yourself a break – this is not easy – be pro-active and you will have a lot less to lose sleep over.

And remember, we are always here for you on our private

accounts on Twitter

Marianne @childanxiety

Elise @aspergers2mom

Pierrette @padentremont

Jane @jhotvedt2

So welcome to the medication rollercoaster – it’s gonna be a wild ride. ~Marianne

Don't Call Them Boys With Aspergers, Call Them Boys

2010-06-14T14:35:00.000-07:00

by, Elise Butowsky
(originally appearing in amotherworld, June 9,2010)

When I was asked to write this article about what our life is like in raising two young men with Aspergers Syndrome, I started to think about just what that meant. What did it mean to raise a child with a disability? The interesting thing I figured out is I actually have no point of reference for raising a child without a disability so the truth is I am not really sure I can answer that question effectively. But I think what I can do is tell you something about my children’s worlds. May be this will help the reader to understand what it means to be completely different than everyone else.

Yes, they are completely different, but you can’t tell by looking at them. There is no outward manifestation of any issues on an ongoing basis. It’s not like they need a wheelchair or walk with a cane or need to carry oxygen with them. Their disability is invisible and when you speak with them, there is no indication that there is anything out of the ordinary. In fact their language capabilities are far beyond that of the average person. So when they get overwhelmed by the sensory input of noise, or smells or even the feel of the clothes on their backs and have a meltdown or become cross for what it seems is no real reason, people just assume that they are for lack of a better word, brats.

You have no idea how many times parents of children with Autism Spectrum Disorders are told that their children are brats. That if they took a firmer hand or were better parents these children wouldn’t behave this way. We are told by total strangers yet, what is wrong with our children and how we should handle a situation that presents itself. I find it so amazing that there are those who would never interfere with anything in another person’s world, but they feel that they can tell you how to raise your child. I have been given more unsolicited advice from the most ignorant of people. Of course, I suppose if they weren’t ignorant then they wouldn’t be butting into someone else’s business. But I digress. Read More...

Parents are a great asset to the IEP team by Lorna d'Entremont

2010-06-05T07:08:00.001-07:00

I thought this post was timely as most parents are headed to their annual IEP meetings this month. Please also listen to my interview with Dr Thomas Armstrong author of Neurodiversity for more tips and attitudes that will make a difference to your child. Dr Armstrong on our Blog Talk Radio http://alturl.com/5bsm - Marianne

Parents Are a Great Asset to the IEP Team

Definition: The term "IEP" refers toIndividualized Education Program, and is most often used in conjunction with special services or for providing instructional services for a child with special needs. It is an ongoing planning-tool that must be reviewed and revised on a regular basis.

Who Develops the IEP?

As early as possible after it has been determined that your child is eligible for special educational services, an IEP must be drawn up. The school is responsible to develop the document starting by gathering all the information.

Then the Individual Education Plan should be refined jointly by the child's teacher, staff involved with the child's program (i.e., Special Education Teacher, Speech-Language Pathologist) and the parent/guardian.

Communication from the beginning among all the IEP team members and the sharing of information and ideas will result in a practical, workable IEP for the benefit of all.

The implementation of an IEP should not have two warring sides. All team members are there to smooth the educational journey of YOUR CHILD. I have been on both sides of the table, believe you me, neither is easy. If anything, the whole IEP team is tied by THE SYSTEM and THE BUDGET FOR SPECIAL NEEDS. It is not parents vs. school.

I have gone to bat for special needs children in my class and had my fingers rapped by higher up. Teachers have much less clout to fix THE SYSTEM than parents and Special Needs support groups. Advocate for your child; do not alienate those who are on the same team. Find the root causes of problems and try to influence changes by going diplomatically through the right channels.

Why Have An IEP?

Parents and professionals from the school, as well as the child if he/she is old enough, must schedule an initial meeting…the first of many I am afraid to say. In an IEP meeting, the decisions regarding special education and related services are made and the individualized educational plan is discussed. The IEP will outline the services your child needs to meet his learning needs. Information about your child’s present educational performance is stated and the specific measurable goals he/she is expected to accomplish within the year are listed. Also short term goals are included and evaluated throughout the year on the way to making progress towards his annual goals.

What is the Role of the Parents?

Parents have a great deal of knowledge and experience regarding their child. Parents are the experts in their own right. They provide historical information and the big picture from year to year. They know what works and does not work with their child and can be a great asset to the IEP team.

The goals and specific expectations, the accommodations and program modifications required must be discussed while fine-tuning the IEP. That first meeting of the whole team will, therefore, not be so daunting to the parents. Nothing should come out as a surprise. The focus of the meeting should be on making the IEP work.

Tip For Parents ~ Keep Records of EVERYTHING!

From the beginning, parents must keep good records in a large, sturdy folder which can be brought to meetings and appointments. Start compiling a list of all the people you must deal with and include all their contact information. An address book for this purpose works well. Keep a journal to write down, in chronological order, all developments. Include all tests results, appointments and discussions about your child. After a phone call, immediately write down the W’s: who, when, why and what. A good policy is to ask for every important decision to be written and signed. Make copies of important papers to always have one to put in your folder. This folder is your bible, it will quickly be worth its weight in gold!

Parents will have to sign consent forms needed for further tests or for the school to receive test results from professionals. Share any relevant reports or assessments about your child. Give your contact information so you are easy to reach to hasten the process.

Who Makes Up the IEP Team?

*Parents and child if he/she is old enough

*Previous classroom teacher if a school term is starting

*Regular classroom teacher

*Special education teacher

* School system representative: ( usually our principal and or the Special education coordinator attended)

*Professional who can interpret the evaluation results that led to your child’s eligibility for an IEP

*Professional who will provide services as part of the IEP

*Any other person either party deems has special expertise about the child

It is important that all parties be present for the initial meeting as well as the follow-up ones. I remember when I was teaching, how difficult it was to set a time when all could be present. It takes time to arrange every aspect of an IEP, therefore start months before you want it in place.

All parties are there for the benefit of your child and want to work in a collaborative way to map out your child’s educational plan. It might be overwhelming for the parents but they should know the whole team wants this IEP to be well drawn up and workable as much as the parents.

It is important that parents continue to be informed and involved in their child's education leading up to the IEP and for all the years after.