Archive
A Daily Reality for Those Touched by Autism
April 8, 2013
By Dan Olawski
The month of April is upon us once again. The fourth month of the year is my son Mikey’s birthday and also National Autism Awareness Month. The former a happy, celebratory occasion; the latter a sobering reminder.
After the pomp and circumstance of World Autism Awareness Day and this National Autism Awareness Month ends, the reality will be that my son Mikey and more than a million others like him will still be on the autism spectrum. While I agree for the need, and support having these calls for awareness, I wish the awareness of how autism impacts a child and their family could look less like the “morning news” and more like the “documentary channel.”
Since autism spans a spectrum of symptoms and behaviors, not everyone experiences it the same way. Some children with autism seem to be typical, while others are quite obviously struggling. The same goes for the families and friends of these children who see their lives completely impacted by the world of autism.
With that in mind, creating a detailed and complete awareness of autism would most likely be quite challenging. And, honestly, some might not be strong enough or, sadly, interested enough to know the deep truths:
How many people would be able to watch a child cry and be devastated by the failed attempts to communicate or complete a simple task repeatedly hindered by OCD or echolalia? How many could watch parents deal with the guilt of thinking they caused their child’s autism or the struggle caused by the questions of what to try next for their child when all else has failed? How many could truly understand just how much time and money it costs to even make an attempt to help your child with therapies, diets, and other unproven programs?
Do they want the real autism awareness? Do they want to know about how many times today I tried to communicate with Mikey only to hear TV show talk or a generic “yes” as the reply? Do they want to know the frustration of feeding your child popcorn, cheese doodles, and peanut butter because that is ALL they’ll eat? Do they want to know how many soiled pull-ups my wife and I have changed this week because the concept of potty training is a constant attempt at futility?
I truly don’t know if the answer could be yes. With most awareness campaigns like this the general public seems more open to throwing some money the way of the cause and then going on with their regular lives. I can understand that. I really can. And I don’t blame them. The real truth is never pretty.
I think what I truly want from an Autism Awareness Month extends beyond facts about how many cases are diagnosed and where people can donate to help. I want people to know that our children with autism are really amazing kids who go through amazing struggles every day. I want them to know that autism parents don’t want you to pity them or their children, but to understand just how deeply love and respect are important to the autism community. I want them to know that after April ends and the TV cameras turn their attention somewhere else, well, we’re still here and we’re VERY much aware of autism. That fact is true, 24 hours a day, seven days a week, TWELVE months a year.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees, and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:
Autism Awareness – A Parent’s View
April 2, 2013
By John P. Hussman, Ph.D.
April is National Autism Awareness Month, which naturally begs the question: awareness of what? As a parent of a 19-year old son with autism, if you had asked me that question years ago, I would have said things like: be aware that kids with autism can be experience sensory overload; or be aware that creating teaching opportunities around an autistic child’s interests can help him learn. Or if I was meeting one of my son's teachers: be aware that if you leave that scented candle on your desk, it's going to have a perfect bite taken out of it within two minutes.
A few years ago, I asked Jamie Burke, a young man with autism, what he wanted people to understand. He replied in four words. “Autism is not disability.”
That idea – autism is not disability – seems warm and fuzzy enough to put on a bumper sticker. The question is whether we are willing to believe it.
Even the definition of autism is loaded with words like “deficit,” “disorder,” “impaired,” and “restricted.”
Can we really believe that autism is not disability? Can we offer people with autism the presumption that they are more intelligent than they might be able to demonstrate? Can we recognize that social interaction may be overwhelming, even if they desperately want friends?
The answer matters. Because the answer will define the quality of life, the opportunities, and the dignity of the people we know with autism – including our own children.
When Jamie says "autism is not disability," he's saying that autism does not diminish a person as a human being. Autism awareness can't stop with a list of things that make people with autism different from us. Because what is essential is the constant awareness of what makes us the same.
The founders of our country did an amazing thing. They based our nation's entire foundation on a presumption – what they called a “proposition” – that all of us are created equal. When we look back on our history, the only points of true regret are those times when we forgot – that all of us, regardless of our differences, and simply by virtue of our shared humanity, are created equal. That word “all” includes people with autism.
None of this is to minimize the challenges that a person with autism faces. Autism can affect every sense; sight, sound, smell, taste, touch, and even a few senses that we parents never heard of before an autism diagnosis, like “proprioception” and “vestibular equilibrium.”
Still, I'd like to suggest that autism is not a disorder of thinking or a lack of intelligence; that even people who look “severely autistic” to the eye are thinking, feeling, people. Their senses may be overwhelmed, their bodies may be disorganized or uncooperative, but their minds are far more competent than we previously thought. As we discover more people with autism who eventually develop speech or other ways to communicate, we hear the same thing again and again: “I'm smart. Tell people.”
As one of the largest private funders of autism research in the country, I’ll tell you a secret. Science has not developed the ability to read the minds of people with autism, or to measure the empathy in their hearts. When we give a person with autism a test that relies on their ability to speak or move accurately, we may just be testing their ability to overcome features of autism that have little to do with intelligence.
So our responsibility is to presume that people with autism are competent, and then go about looking for ways to help them demonstrate it. If you're a parent, tell your child what's going on in the family, in the world – all the interesting things that you would share with another child. Hold up your end of the conversation even if they don't hold up theirs. Create teaching opportunities out of their own interests. Give them the dignity to be embraced as ordinary, more often than they are excluded as special. Teach them and read to them even without needing a test at the end. Assume that they listen; that they appreciate; that they love, while we keep looking for ways for their mouths or their hands to tell us.
And then love them back. Not for who they might have been without autism, or for who they might be if they were “cured,” but as people who need to be nothing other than who they are, to be loved and accepted.
Because when we do that, we open the door for them to share a meaningful life with us, without having to take an admission test. We start seeing the gifts of people with autism, not the limitations. We start to think less in terms of disability and more in terms of humanity. And not least, we sometimes find that the things we like most about ourselves – are there because a person with autism is also there.
The author is the Director of the Hussman Foundation, and helped to establish the Hussman Center for Adults with Autism at Towson University, and the Hussman Institute for Human Genomics at the University of Miami.
Topics:News
Different Like You & Me
March 27, 2013
By Dan Olawski
Back when I was a young boy growing up in my hometown in New Jersey, I was different. The town where I lived predominantly consisted of people of English, Irish, and Scottish heritage whose children were all my classmates. But, me? Well, I had a Polish last name (it was only the fact that most people called me Danny that got me through some situations), I was the skinny shy boy, I didn’t like soccer, and I was the shortest kid in my class (the latter fact remedied by a growth spurt in high school that took me over six feet tall, whew!). To say I was different would be an understatement, and to say it wasn’t noticeable would be an outright lie.
I have been thinking about those days again lately because my son, Mikey, is now about the age I was when my differences started to become an issue. Mikey is about to turn eight and my wife and I realize that his differences are now becoming apparent and making him stand out from other children his age.
It’s not just the obvious stim behaviors (so typical of most children on the spectrum) that set him apart, but Mikey’s clueless concept of personal space, loud outburst of echolalia, and his “diet” of peanut butter, popcorn, and juice are definite red flags for even a casual observer. We have noticed more people noticing Mikey recently.
Back when my differences started to set me apart from others, I found myself being picked on a lot. Verbal teasing was pretty much a daily routine and at times it was accompanied by pushing or kicking. No child should ever go through this and, until I learned to deal with it, it had a major impact on my life. When a child experiences that kind of abuse they lose confidence in themselves, become even shyer, and tend to avoid doing things other kids are doing for fear of getting singled out again.
It’s with those memories in mind that I worry about Mikey and his fellow children with autism. Like Mikey, I couldn’t change or control most of my differences. But, unlike him, I eventually grew taller, bigger, more athletic, and less shy and those changes were enough to make my differences disappear. Mikey, and most children with autism, probably won’t be as lucky to escape their differences.
Mikey is an amazing little boy. He’s smart, funny, and very happy. And that is exactly how his mother and I treat him. But we can’t control how strangers see and react to him. And this is where the urgent need for awareness and education become extremely important. It is our responsibility as parents, teachers, and therapists to educate the public about the impact of autism on an individual’s life.
Next month, April, is National Autism Awareness Month. Let’s start preparing now to truly reach out to the public and go beyond spouting the usual blurbs about the 1 in 88 ratio. Let’s use the myriad resources available from great organizations like the Autism Society to spread not just awareness of autism, but to educate about the effects of being on the spectrum and the harmfulness of ignorance. And, perhaps, with a little bit of wisdom, we’ll create the realization that, yes, our children are a little different…just like you and me.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees, and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:
Learning to Lose
March 6, 2013
By Lee Passehl
I have talked about my radio control car racing before. For the past five months, I have been racing in a league called the Ultimate Formula One Winter Series. Everybody I race against is neurotypical. A big reason why I race is that I am treated as a normal person, not as someone special-disabled. When I step onto that drivers stand and I squeeze the trigger, I am on the same neurotypical playing field as everyone else on the track. In fact, I am respected.
But it took many years and lots of painful lessons learning the hard way. When I would misbehave at the track, my dad would pack up everything and send us home early. I had to learn about sportsmanship, etiquette, tolerance, disappointment and, most of all, self-control. This meant following the appropriate social rules. I started to understand this after a phone call from the race director at my former home track. I had screamed obscenities at drivers who would not get out of my way. The track owner called my parents the following night and said that if I behaved like that again, I would not be allowed to race at the track again.
My parents knew that winning was really important to me; I would do anything to keep competing. I always had to be first, like first in line at the bus stop. Most people let me through or else I would have a meltdown. Obviously, I didn't have a lot of patience. I had to learn to control myself and not be so demanding. One year I rolled my car over a pylon while trying to take the lead on the first lap of a big race. Had I waited for the leader to make a mistake, I would have won the national championship. By learning to be more patient, I drove better, and was able to drive more cleanly and perform better in races. It has also forced me to communicate better with my parents and other people. My dad sets up most of my cars, and I have to be clear about how the car is responding so we can make the proper adjustments.
For me, racing has turned an undisciplined child into a well-behaved and socially-acceptable man. I learned by having my privileges taken away and returned many times. I am still working on my skills today. There's so much I still don't understand. I hope every autistic can find something that can help them integrate into the social world. Radio Control car racing taught me how to lose and lose graciously. It has helped me set goals and to work slowly to achieve something, even if it took a long time.
If you are interested in seeing my latest racing pursuits, here's a link to the club site news.
Lee blogs for the Autism Society about his life with autism. Read his story!
Topics:Living with Autism
One Day His Some Day Will Come
February 8, 2013
By Dan Olawski
After my previous blog article (“Merry Christmas, Daddy!” An Imagined Conversation with My Son) was published, I received many wonderful comments and emails. The most common thread among that feedback was that my Christmas wish would come true someday. That concept of “someday” has stuck with me for a while now.
The dictionary defines someday as “at an indefinite time in the future.” When I think of that sort of passage of time I picture the pages of a calendar ripping off and flying through the air as in an old black and white movie...a frenetic and non-reassuring image. But, as is often the case in the English language, someday has another meaning when spelled some day. Some day is defined as “a non-named but particular day in future.” A more positive, but still indefinite spin on the word, “We’ll get together again some day…I promise.”
For parents of children with autism, we watch our children struggle through various challenges while we work toward, and hope for, a positive outcome. We always shoot for some day, but often realize it may be more like someday.
I remember back to when my wife was pregnant with Mikey and how I’d think, “Some day he’ll be here with me.” And then when he was a baby crawling on the floor, “Some day he’ll be walking.” When he was a toddler it was, “Some day he’ll be talking.” But since that life-changing autism diagnosis, it just has been years of, “Someday.”
As I entered this new year with all of its freshness and potential for good things to happen, I thought about the regression and lack of progress that plagued Mikey last year, making that someday seem impossible to ever arrive. However, when it comes to Mikey, I’m an optimist. And my wife and I knew there were things we needed to do to steer our son back in the right direction, and over the past few weeks it appears he has turned a corner and is making positive gains again.
So, now, I’m trying to look at Mikey with a new word in my head, “soon.” Soon…one day soon. With a lot of work and a lot of love…one day his some day will come.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:
Autism and Sociability
January 31, 2013
By Lee Passehl
Some people believe that Autistics are antisocial. I am not antisocial, though some people might interpret my behavior as though I am. I like being around people at social events because I am curious, and I like to get to know new people and unwind after a long day. When I am not around people I miss the stimulation talking to my friends, family and certain people I do not know. When I was younger I would go into my room during a big party (even for my own birthday parties). I think I had a sensory overload, but it was a good sensory overload. It was like pigging out on all the candy and chocolate ice cream you can handle. I was so ‘stuffed’ from the stimulation that I had to take a break. I was taking it all in. Another thing is that I also run out of topics to talk about and my brain gets a little overheated from talking for a while and I need a rest.
When I graduated from high school, I wanted to have a graduation party but my parents were worried that I wouldn’t be a good host and I would leave my own party. They were probably right, but I’m more mature now and I know I would do much better these days. Having many people around makes me feel good.
When I was 2-5 years old, my parents used to have great big picnics in the countryside at my house. These were some of the happiest days of my life because I felt so happy in the presence of many people. Even though sometimes I would stay in the house, I felt awesome that so many people were around and I would have liked to have talked to them if I could. I look at friends on Facebook who have many family members over for the holidays with awe.
As a person with autism, I can tell you that I am definitely not antisocial. There are a good number of times I would prefer to be alone. But most of the time I want to be with people and interact with them as much as I can and tell them about my life, discuss what’s happening in the world, and hear what’s going on in their lives.
To generalize that autistic people just want to be alone and by themselves in their own little world is just not right. There are probably many Autistics like me who want to interact with people and spend time with people but just simply don’t know how. They would love to have the interactions that most people take for granted: Working towards an intelligent conversation.
Lee Passehl blogs for the Autism Society about his life with autism. Read his story!
Topics:Living with Autism
“Merry Christmas, Daddy!” An Imagined Conversation with My Son
December 21, 2012
By Dan Olawski
Back when my wife and I were first married (and long before our son, Mikey, was born) we had a lot of friends and family with young children around Mikey’s age (7 years old). We’d get the biggest kick out of how talkative and precocious their kids were, and, despite the parents’ occasional frustrations, with how detailed their conversations could be about every aspect of their favorite cartoon or questions about why the sky was blue.
Our experience with Mikey’s communication skills, unfortunately, has been quite the opposite. While Mikey won't stop talking at times, it's all mostly echolalia. The rare times he puts words together to request something, he either speaks too low or too loud. His answers to questions are usually "yes," with that response coming as soon as he hears what you are saying (and sometimes before that).
I often remember back to the way those children would bombard their parents with every thought in their head and I look at Mikey and think, “Ask me a thousand questions...and then a thousand more. Sing a song with me. Laugh at a joke with with me. Scream at me, even. Please, bring it all on and never stop. You’ll never bore or frustrate me.”
This time of year is particularly rough because any feelings Mikey has about the Christmas season are unexpressed. You can’t imagine the joy I’d feel if Mikey had a Christmas list or hounded me non-stop about wanting a certain toy. It is that very desire that has made it difficult for me to give my wife my own list. Why? Because she can’t possibly give me what I really, really want: A conversation with Mikey…
It’s Christmas morning and, as I just start to open my eyes, Mikey walks into the room and climbs onto the bed with me.
“Merry Christmas, Daddy!” he says in his beautiful, beautiful voice.
“Merry Christmas, Buddy!” I say as I give him a big hug and kiss.
“Daddy, do you want to go downstairs and open presents now?” he asks excitedly.
“In a few minutes, how about we sit here and talk for a little bit?” I say, feeling completely content with the world. “Is there something you really wanted for Christmas, Mikey?”
“Yep, you know, Daddy, I really, really, really want that Chuck E. Cheese toy,” he says with a look that drives home his words.
“Well, I think you were a pretty good boy this year. Maybe Santa left you a gift or two,” I say, trying to hide the knowledge of every gift sitting under the tree.
“Hey, Daddy? How does Santa fly through the air with his sleigh?” he asks with a quizzical tone.
“Well, I can’t say for sure, but I’d have to think it’s magic,” I say, hoping that’s a good enough answer.
“Hmmm, yeah, I think you’re right. But how does he remember what every kid wants for Christmas?” he says, convinced that his father knows what he’s talking about.
“Uh, well, you know how you have an iPad? Maybe Santa has an app for that,” I say, holding back a laugh and giving my most honest face I can muster.
“Oh, that sounds so cool!” he exclaims. “Can we go downstairs to the Christmas tree now?”
“Sure, Buddy, I know you can’t wait. But do you have any other questions for me?” I say, trying to extend this amazing moment as long as I can.
With a grin and a smile, he moves his face close to mine and says, “Yes, I have one more question…why is the sky blue?”
Holding back a tear, I pull Mikey into a hug and I whisper, “Thanks, Buddy.”
“You’re welcome. Merry Christmas, Daddy,” he says as we start to go downstairs.
“Merry Christmas, Mikey,” I say through the biggest smile ever.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
Autism Ain’t Afraid of the Dark
November 7, 2012
By Dan Olawski
Over the weekend leading up to Hurricane Sandy’s arrival here on Long Island, I did what most homeowners were doing. I put away outdoor items, taped up windows, gassed up the cars, and took inventory of flashlights and batteries. As for my son, Mikey, he took no notice of any heightened importance…it was just another couple of days to him.
I couldn’t help but think of the saying: “Ignorance is bliss.” I’m not sure how true that is, but, in a way, I’m glad Mikey wasn’t as worried and nervous as his mother and I. And, thankfully, as Sandy hit us with her worst, Mikey slept through the night. It was only in the aftermath of the storm that he would realize things weren’t as he knew them (and wanted them) to be.
We lost our power and heat early Monday afternoon as the hurricane was arriving. We were very lucky not to suffer any damage or flooding from the storm (I wish I could say the same for some of my neighbors). But the house wouldn’t feel warm and the lights wouldn’t shine again until Friday night.
Unfortunately, with the changing weather patterns, Hurricane Sandy is the second hurricane to come through Long Island in two years. Irene hit us last year and also knocked out our power out for a few days. It was then that I realized autism doesn't disappear just because the lights go out. Your house may lose power, but autism doesn't. This time around was no different.
When most of us have to deal with something like a power outage it disrupts our routines, but that is even more amplified for a child with autism. Add to that no school or home services and very limited places to go outdoors and you have the makings of a stressful and potentially dangerous situation.
(It is here that I have to thank Apple for creating the iPad and iPod…our main sources of distraction for Mikey during the outage – although keeping them charged proved quite challenging…thank goodness for car chargers.)
The first night without power or heat wasn’t a big deal for Mikey. It wasn’t cold out yet, he had a fully charged tablet, and he stayed close by to us (I believe sensing our trepidation). The next morning, after the storm passed and the blue skies greeted us with relief, I spent some time checking for any damage to our house and Mikey was able to lead a pretty normal day. Hearing of the devastation to most of the Island and the surrounding areas tore at my heart and also made me realize it was going to be a while before we got our power restored.
The first post-Sandy days consisted of daylight hours of trying to keep Mikey entertained without being able to take him out in the car (the roads being treacherous from downed trees and wires and powerless traffic lights), and night hours of trying to keep him warm and safe. I felt my chest tighten with stress each evening as the sun went down and the dangers of candles clashed with the potential hazards of falling over objects in darkened rooms.
Overall, thankfully, Mikey got through the week pretty well. His behaviors were definitely increased and he had a few meltdowns, but, quite honestly, after a few days of no power and heat I had a couple meltdowns myself. When requests for ice pops went unfulfilled and batteries finally died for the night, Mikey’s stress levels would go up. His efforts to communicate lessened and with no structured setting like in his classroom there was definitely more stimming and echolalia.
We did our best to provide Mikey with as normal an environment as we could and were there to comfort him when normal wasn’t possible. That is all we can do as parents, because while autism may not be afraid of the dark…neither is love.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
It’s Okay…
October 2, 2012
By Dan Olawski
Streamers fell from the ceiling and a brass marching band played “Happy Days are Here Again” as the school bus pulled up for the first day of school a couple weeks ago. Well, no, not really, but to say I was happy about the beginning of the school year is quite the understatement.
Mikey didn’t have the best summer break. He regressed a lot and his behavior was challenging at times. I always look forward to the beginning of the new school year, but this year I really couldn’t wait for it to come. Do I feel guilty about saying that? Sure. But it’s okay…
Mikey needed to be back in that structured environment and that’s how I justified my feelings. I did have some pangs of guilt about rooting for school to start back up and for thinking that being around the teachers and other students would be better for Mikey than anything I could do for him at this time. As for having those thoughts, well, it’s okay…
There is a great opportunity for guilt when you are an autism parent. And that stems from the first diagnosis: “Is it my fault?”
Through daily life: “Am I doing enough?” “Did I do the right thing?”
Then there’s that other internal guilt that just wrenches your heart. It’s a guilt that makes you feel like the worst person in the world. But I’m here to tell you it’s okay…
It's okay to be happy about back-to-school season…
It's okay to be happy when your child goes to bed…
It's okay to have those bad days when everything about being the parent of a child with autismgets you down…
It’s okay to want to scream…
It’s okay to cry…
It's okay...
We all have those feelings at some point. They come upon us sometimes at the worst moments and overwhelm every fiber of our soul. But yes, it is okay to give in to them…with a few stipulations:
- You must be a truly loving parent who gives your child all the love and attention you have to give.
- You must have the ability to know when your child will gain from you stepping back to let a teacher, therapist, or coach take over for a bit.
- And, most importantly, you must be able to realize when an occasional urge to cry or scream has become a problem that consumes you on a daily basis and requires the help of a professional.
So, as I sit here listening over the monitor to Mikey still goofing around three hours after I put him to bed, I can’t help but think to myself, “Go to sleep, buddy. Go to sleep!” And you know what? He will. And I will. And in the morning…it will be okay.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
Level I
August 31, 2012
By Jeff Stimpson
“Level I Assessment” reads the document they slide across the table at Alex’s IEP. It claims to be a “student interview,” and has spaces for his name, birthday, age, and today’s date. He had filled them all in with a pencil with numerals and letters that grew as he wrote left to right. The “son” of “Stimpson,” for instance, is twice the size of the “A,” the “98” is twice the size of the “6” for his birthday. You get the idea. I also have to think someone in his school helped him on the questions, but at this point I do hope that means they didn’t actually have to hold his hand that was holding the pencil.
The assessment consists of 12 multiple-choice questions for my son Alex about his life and activities. Each question and selection of answers comes with assorted square-inch pictures I sort of remember from standardized tests I took in first grade. I’m not a big fan of standardized tests, and one reason is that one of the pictures on my first-grade test was of a squirrel, and that made me teary because we had a cute squirrel living in our backyard at the time and I wasn't used to being in school for a full day. Hard times.
“What would you like to do when you leave school?” Alex is almost 14 and still watches Teletubbies, so this one chilled my spine right off until I realized they were just asking about dismissal at the day’s end. Alex checked “Home.” In response to “What do you like to do?”Alex checked “Music,” which I think must take a distant third to “Computer” and “Television” but does place several laps ahead of “Cleaning - Work.”
“What do you do when you go home?”
“Listen to music.” Again with this? But yes, there is music in Teletubbies.
“What do you not like to do?” Alex checked “Computer,” which brought to mind the beaten expression on his face a few years ago when he tackled and failed an IQ test. Wish he’d checked “Friends.”
“What jobs are you interested in?” He checked “Delivery of materials,” which coincides with what his teachers have reported and does offer a legit job possibility.
“What is your favorite part of the school day?”
"”Reading.” Great! The picture for “Reading” resembles Kilroy reading a book.
Is there something you'd like to do before you graduate?” Alex checked “Trips." For Alex I would've checked “Win Mega Millions.”
"Would you like to visit a possible program before you graduate?"
“Yes.”
A teacher asked me once if I was worried what would happen to my son when he graduates.
“No,” I replied. “I’m worried about what happens to my son when he’s 40.”
I’ve seen those programs. People like Alex being sheparded into lines to head to something fun to do on a typical day. A movie. An amusement park. A walk through a New York neighborhood where people glance at Alex with a surprising amount of understanding. The future for my son after graduation and a possible program includes the charity of others. I only hope that unlike the budgets that charity never runs out.
Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
Topics:Living with Autism
