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Autism: Front and Center

By on January 29, 2012 in Autism

Mike book drawingWe went to the Friday evening show of The Dinosaur Petting Zoo at the Tilles Center last week. We had to get their early to pick up our tickets for the general admission show; showing up at 4pm for a 5pm show. When other families started arriving, my wife’s first comment was “uh oh, it’s a little kid’s show”. Indeed, the overwhelming majority of children showing up for this puppet show were under 8 years old. Mike, our youngest of three and bona fide paleontologist-in-training, is 12 years old.

As if we didn’t have anything else to worry about with a child with Autism, having a child who literally towers over other children in a public venue is akin to putting a sign on his chest that screams “Look at me! I am different!” As much as parents with Autistic children will attest that they have developed thick skins, we yearn for times when our children blend in, if only for a scant minute or two. We are in fact okay with, and often celebrate our children’s unique traits and abilities, but are achingly aware of the public stigma of Autism.

Mike, as anyone who has ever met him will attest, knows everything there is to know about dinosaurs in general, and T-Rexes in particular. His room could be converted to a Jurassic Park gift shop if we ever needed a second income. His dinosaur-related DVD collection is better than most libraries. He knows how to find dinosaur toys, books, pictures and memorabilia on eBay, Amazon, Google, and lesser known websites. He has re-drawn the pages of a pirate book (“Captain Flinn and The Pirate Dinosaurs”) and replaced the human characters with his dinosaur toy friends (they each have a name, of course) with elaborate detail.

dinosaur petting zooYou get the idea.

So we progress through the show, which ends with a volunteer from the audience being asked to the center of the stage. None of the ‘little kids’ want to come up; some take a step forward, but quickly run back to their moms and dads. There are three; perhaps four kids in Mike’s age group in the audience that still hesitate at what might be in store up on stage. Mike has his hand raised patiently, waiting and hoping to be picked. His eyes never waver from the emcee. There is no fear, nor trepidation; no anxiety which often destroys the public outings of many families affected by Autism. For that brief instant, he stood out in ways those other children could only aspire to: he was without fear, and for that, he blended right in with them as they screamed with glee.

As much as dinosaurs (and to a lesser extent, crocodiles and other toothy animals) are a major focus for Mike, he is progressing; becoming more conversational, empathetic, and academic. For this we thank the tireless work of his teachers, and his brothers, and everyone who has connected with him. This outing also taught my wife and me that Mike will continue to teach us things about ourselves, and we can’t wait for more of those lessons.

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Planting the seeds of independence

By on January 26, 2012 in Autism, Parenting

Independence, that place where you can have chocolate for breakfast every single day if you want… but that you know you shouldn’t. It sounds simple enough for those of us who just do it but having a child really has a way of putting it all into perspective.

This month, we’re taking the first steps, which seem so very trivial and yet, so huge.

First of all, we’re encouraging them to do some things on their own.. they can both get dressed on their own now, which is a great first step. Now we’re pushing forward with having them brush their own teeth, dry themselves after a bath and little things like that.


But now, the big one… getting their own juice!

This is a very scary one for one simple reason… one wrong step and it’s sticky, juicy, splash city all over the kitchen!

So what we did was visit the local dollar store and pick up a smaller jug. It has a smaller handle and is smaller over all.

This makes it a lot less heavy and much easier to get their little hands around.

Also, we moved their cups from being up in the cup/glass cupboard to down into the gluten free food cupboard under the counter. This way, they can go and get themselves their little plastic cups any time they want.

The pouring is still a pretty scary task but it is now so much more manageable for them and they feel so proud each time. Often, when they ask for juice and I give them the go ahead, one of them will rush off to pour glasses of juice for both of them because they’re so eager to be such big boys.

This is one little step closer to me no longer being a servant and one huge step closer to them being able to do things for themselves.

It’s also worth noting that Cameron is 6.5 years old while Tyler just turned 4…. and while Cameron is doing grade 2 school work while he’s only in grade 1… when it comes to the motor skills required to pour juice, because of how autism affects him, they’re actually pretty even skilled.

In a way, I kind of feel bad that he’s learning the things his little brother learns at the same time, when it comes to tasks such as this but at the same time, I do like that they get to learn them together and gain an even closer bond that comes with the success of independence.

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Stage Fright

By on January 24, 2012 in Autism

My 13-year-old son Alex stands in the orange stage lights of his school’s spring talent show. He’s helping his physical therapist hold up a big sign that says either CHA CHA or DANCE. I don’t have a chance to tell which the spinning signs says before Alex vanishes stage left in the Speedy Gonzalas whirl.

“Maybe he’ll be part of your road crew next year,” I’ll tell his teacher later, after the PT escorts him back to his seat.

“He was cocooning himself in the curtain,” the PT tells me, “and we figured, ‘Not today.’” She sounds likes she’s trying to comfort me about this, and I’m trying to decide if I need to be comforted.

Alex’s school holds a talent show every year – at least they have since he got old enough to attend 6th grade. Before that, every spring they’d have a carnival of games and music and face painting and stuff like that. Alex used to run away there, too. Last year in the talent show, he drummed. Bongos. I sat there watching his face and its Matt Dillon brows and downturned W of a mouth as his para sat too close to him for it to be normal and he drummed and looked out at the lights.

What does anyone see when they look out at the lights in an audience, their stomach a knot? What did Alex, with autism, see?

The bongos came up again last summer, when Alex and I were walking home from Target where we’d bought milk and we passed a bodega store at E. 108th Street and Lexington Avenue, where a man was pounding a bongo with skill. As if waiting for Alex, a bongo sat empty next to the man, and Alex sat down. To this day, I’m not sure if anyone in the crowd cheering the man or Alex and the bongos or both understood that Alex has a problem. They cheered and told me there was no problem. And there wasn’t.

But the show this year. It started a half an hour late, which seemed like a long time to ask kids with special needs to sit, considering that some had filed in early. I kept craning for Alex’s orange hoody. When I spotted it, I assumed that under the hoody Alex was wearing the tie-dyed white T that a few weeks ago, in the “communication book” home, we were told was the uniform of his performance.

Alex’s was one of the last classes to file in. He saw me in my seat. I asked his teacher if she thought it’d be better for him if I moved. She didn’t say one way or the other. I moved anyway, and Alex kept looking for me until he found me, and I waved. “You’re on first,” I heard someone say to Alex’s class, and they went out a door. When Alex appeared in the orange lights a moment later, he was still wearing the hoody. Where was the tie-dyed T, with all the preparation behind it?

I watched him on stage; I wasn’t proud but I wasn’t ashamed, either, as I saw him bend down and bolt.

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Jeff Stimpson is a native of Bangor, Maine, and 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 asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, 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.”

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Different Kinds of Special [Review]

By on January 23, 2012 in Autism

I received the book “Different Kinds of Special” this week, written by author and poet Donna Carol Koffman. She is the grandmother of a little boy named Reese that has autism and it is for him that she writes this… or at least, he was the inspiration.

As the description says: “In this book, Donna gives Reese a voice to teach young children empathic understanding, acceptance and inclusion.”

Also, an interesting bit of trivia for those of you that have or get this book… the illustrations are done by Breanne Biggar but, one page, where the children are drawing on a sidewalk, you will see the wonderful art work of a young man named Devin, who has Aspergers. He was 6 when he made those drawings and you can read a bit about him at the back of the book.

different kinds of specialThe Book

The book is about a bunch of children all going to the park to play… but none of the children are the same as each other. This book explains very simply yet very clearly just how different each person can be from each other. Starting with the obvious, such as hair colour, height, weight and so forth, the book eventually gets into more distinct differences such as how some people are unable to walk (wheelchair) or communicate (talk)

The Story

While there really isn’t much of a story, it does take you along on a bit of a journey through the park. It’s kind of like people watching, but for children. As you go through it, you really feel like a child standing there while your mom or dad talks to you about what you see. And that’s how I felt, and I’m a dad. To invoke that kind of feeling in a reader means that the message is being delivered very well.

My Review

I read the book by myself while my wife read the book with my son Cameron. So I’ll give you an idea of what we both think.

For me, I found it quite intriguing that autism is never actually mentioned. It’s also quite brilliant, in that it’s just another one way that everyone is different. So rather than single out any specific disorder or ailment, you’re left to fill in the blanks as you read about those that can not speak, see, hear, walk and so on. These children on the pages all have different strengths, weakness, colours, sizes…  and they all have smiles.

I can picture my son in those illustrations just as I can picture other children that I’ve met through my life or that I know right now. They can all fit into these pages.

More so than that, I can see myself in many of the pages. As you read about how some children are shy, some aren’t, some don’t like to do some things, other do…  and some children cry because of how hard it is to make other people understand them… you get it. Both as having memories of that but also in understanding where her grandson as well as our own children are coming from.

My wife said:

The book gave a good sense of accepting those who have differences and allowed Cameron the opportunity to look passed himself and see others and accept and want to help them. We were able to talk about the book and explore ways to make people in our lives feel more welcome and loved even though they have differences. 

Together, we both felt the only criticism we could make is that it’s a bit of a dry read, in that there is no story and comparing differences makes for a bit of repetition. Our four year old lost interest half way through. Cameron, however, did not.

But it was never meant to be a story and no one will ever fault a four year old for not grasping the differences of all people. So while it may not make the best bedtime book ever, it does make for a wonderful story time book that really helps to reinforce acceptance within us all.

If more people read this book to their children, there would be far less bullying in the world.

You can buy Different Kinds of Special from Amazon.com for just $19.95 in paperback and read more about the book at http://lostforwordspress.com/

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Know your child is how you want your child to be

By on January 20, 2012 in Autism

Whether you feel that Autism needs to be cured or not, we’ve all had that moment where we thought our newly diagnosed child was doomed to a complicated struggle of a life and that they will never amount to what others see as average, much less the lofty goals and dreams we had before the diagnosis.

There is certainly nothing wrong with this, it is natural. It is a scary thing to have happen to you and to your child.

Less than perfect

For many people, that feeling of disappointment and fear of the future passes. Maybe not entirely, but for the most part. They learn to accept that their child is how they are and that they’re perfectly wonderful just the way they are. It’s certainly not without it’s struggles but parents take each day as they are and love their child unconditionally… no matter what.

Then there are those parents who hold on to that disappointment and will always fear the future. They see their children as damaged or defective and seek vengeance (or justice) on those who are responsible. They will never accept that their child was meant to be how they are.. and who they were meant to be was robbed from them.

I don’t know who is right and I don’t know who is wrong, I don’t know if there is a villain to bring to justice… but what I do know is that no child should ever feel that their parent sees them as less than perfect… much less broken or defective.

Few exceptions

Even a child that does not speak, does not engage their parents, does not play and has all the other “severe” indications of “low functioning” autism can sometimes surprise us. The right tool, device or incentive can help some of these people “find their voice” and show the world what they’re truly made of.

It makes many people think that a lot of autistics have it within them to do this. You, and they, just have to find a way.

If true (which I believe it likely is, at least for some), then the things you say, do and even think will be picked up and even understood by your child. Even more so if your child is able to express themselves and communicate better.

Even if you try to hide it, if you truly believe that your child is broken or defective, it will affect your child. Perhaps the parent is a little less affectionate, perhaps they’re a little less encouraging… these things will resonate with your child. It may be on some subconscious level or it may just be a hint of self doubt that lives within them into adulthood.

Few children are able to excel despite a parent’s disapproval, few children are able to truly be self confident when their own parents do not believe in them first. Some children can overcome that but doesn’t a child with autism have enough to overcome already?

perfection

Unconditional love

I’m not saying that you are wrong if you fight for a cure, I’m not saying you’re wrong if you are fighting to put a stop to what ever you believe is the cause of autism… what I am asking for is… please stop seeing your child as broken.

Accepting your child for who they are, right now, right in front of you… it does not mean giving up. It certainly doesn’t mean you don’t care. All it means is that you love your child, through and through, 100%, no matter what.

Know that your child is perfect, know that your child is who they are and encourage them to always be themselves. Know it.

Don’t just think it and don’t just make it something you say so that you can feel better about yourself for making them feel better about themself… you need to believe it. You need to know it.

This is your child and your child deserves that much from you.

Once you believe it, the real miracles start to happen.

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