Tag Archives | parents

Mom, did you give me autism?

By on March 13, 2012 in Autism

Has your child ever asked you if you were the one to give them autism? If not, can you imagine it? What would you say?

My son asked my wife one day. Rather than try to tell you about it, I asked her to write about it in her own words.

This post was written by my wife, Natalie.

 

autism questionLike most days, I picked the boys up from school. Cameron is the first to arrive as the autism classes are let out earlier than the rest of the school to avoid the usual end of school day hustle and bustle. This gives Cameron and I 20-30min together to talk about his day.

On this particular day Cameron had a field trip with his class. They went snowshoeing at the local cross country ski resort. At first Cameron was talking about what a HORRIBLE day he had. He explained that he was with the same kid the whole time, that it was hard work and that he really had to pee! He said he was stuck in the trails and there was no private place to pee so he had to hold it. Then when they got back to the lodge they got shuffled onto the busses and then he had to hold it all the way back to school. He made it through with no accidents and his teachers were sure to let him into the washroom first thing.

But do you know what he told me after that? He started talking about the snowshoes and how they clip on, how they keep you above the snow, what they were made of and everything else he could think of. Then he told me that it was a really great day! Once he got passed the one thing that went badly he was able to see all of the good things about it, all on his own.

By this time, Tyler is headed towards us with his usual big smile and outstretched arms, waiting for his hugs. As we walked to the car, Cameron asked “Hey Tyler! How did you like your field trip today?” to which Tyler replied “What field trip? I didn’t have a field trip.” This was my cue to step in. I told the boys that only the autism classes had a field trip and that the boys and girls in Tyler’s class do not have autism.

Cameron thought about that for a minute, got into the car, buckled up his seatbelt, turned to me and said “Mom, did you give me autism? Did you choose it for me?”

Never having been faced with such a forward and direct question about this I was unprepared and worried I was going to say the wrong thing. I told Cameron I would answer him once I got into the car and we were driving. This gave me a chance to think about it for a minute.

I told Cameron that God chooses who’s special or different. God makes everyone unique.

“God chose you Cameron to have autism and he chose Tyler to not have it. Just like you’re good at math and Tyler is good at art. Everyone in the world is different in one way or another,” I said.

Tyler jumped in and said “Ya Cameron, you have autism and I don’t but we’re still the same a little, we’re brothers and boys!”

This made Cameron happy and then he seemed happy that he was the one to have autism! And he was special because he got a field trip. I was worried that Tyler would feel left out but he didn’t feel that way at all. He was really happy for his brother.

This is one of the best talks I’ve had with my boys in a while. Some days, driving them back and forth to and from school starts to feel like it’s never ending… but I will always remember that these times allow us to talk and connect in a way that we normally wouldn’t. I’m feeling very blessed at the moment.

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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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Explaining Autism

By on January 6, 2012 in Autism, Autism Awareness, General

I realised something today about autism. I realised that despite spending the best part of a year immersing myself in all things autism, reading every book, blog and website about the subject possible,and despite living with a four-year old autistic boy, I still really struggle to answer the simple question, ‘what is autism?’

I’ve mostly been asked this question by relatives, but variations of it crop up from all sorts of places. I’ve even been asked at work, and I work in a school. I usually begin by telling them it is a disability and a condition that affects the brain. After that, I start to struggle.

It’s not that I don’t understand autism. Since my son’s diagnosis last March I’ve come a long way in learning about it both first hand and through educating myself. My son is four year’s old and in his first year at (mainstream) school. Our story is probably very typical: at around two and a half we grew concerned about speech, communication and general behaviour. The usual struggle for diagnosis, support, and educational provision followed.  In the process I came to learn about educational statements, speech and language therapy, disability living allowance, Specialist early year’s services, Sunderland tests, social stories and countless other things. I’ve read the books and I’ve been there at every step of my autistic child’s development. It’s all well documented in my blog which you can read here.

So my difficultly in explaining autism does not stem from a lack of understanding, ignorance or, I hope, problems in expressing myself. The truth of the matter is this: how can you possibly explain autism to a person in a way that will help them understand? That will truly help them to understand the condition. How can you possibly find the right words that will help them realise what autism is like for your child and for your family?

Asking or expecting someone to understand, to really understand, is unrealistic. That’s why it is so difficult to explain what autism is. I could tell them about the triad of impairments, about the lack of theory of mind and the sensory processing difficulties. I could reel off a whole load of information about the condition. But I doubt it would really tell them anything about my son. A wiser person than me wrote, “If you know one child with autism, you know one child with autism.” The condition is so varied, affects people in such different ways, that finding an adequate, all-encompassing explanation is, I think, impossible. How could a simple explanation ever help someone understand the roller coaster ride that is life with autism (both for the child and their family)? The only way to really understand autism, and the effects it has, is by living with autism.

It is the families who live with autism themselves who know what life is really like. I am lucky in that I have a great deal of support from my family and those around me. But they don’t understand. Sympathy is not the same as empathy. For us, the best support has come from reaching out to those in a similar situation, whether it be through support groups, social networking, or blogs. That is why blogs such as this one by Stuart Duncan are so important, and it’s why I blog too.

I’d like to thank Stuart and the other contributors to this blog. By writing about the condition from the ‘inside’, you are reaching out to those in a similar situation. I expect that many people out there have no one who they can really explain autism to. This blog helps them realise they are not alone.

B’s Dad

Life With an Autistic Son

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Why don’t you celebrate New Years Eve?

By on December 29, 2011 in Autism, Autism Holidays

I get this question a lot, because it seems very much out of the ordinary to not be up at midnight, getting drunk and kissing someone at the stroke of midnight. To not do it is… blasphemy!

The answer is really quite simple.

happy new yearI wake up at 5am many mornings, sometimes earlier, sometimes I wake up often through the night. I have 2 children that require a lot of my time and energy even when I work 8 – 10 hours a day. By the time it’s 9pm and my boys are asleep, I’m ready to go to bed myself but I can’t because there is still more work or chores around the house that need doing.

So I get to bed around 11pm and again, sleep 6 hours or less if I’m up often due to the boys… and do it all again. And I do this 356 days a year.

So already the answer is forming…. but there’s more.

My oldest boy, Cameron, has Autism. That means that we can’t just hire any teeny bopper with a need for some cell phone minute money to come in and take care of my children.

In fact, even most responsible adults are not really ready to take on that task. Only those that know him well. And those people tend to have full lives of their own already so are not readily available.

Take a special day like New Years Eve and.. well, those older, responsible, living life people are already doing something on New Years Even that doesn’t involve being stuck in my living room while some kids that are not theirs are sleeping.

So no… we don’t go out and celebrate New Years Eve. In fact, we don’t even stay up until midnight.

Because when you add it all up, when you really stop to think about it… the needs of your children, the happiness you get from their achievements, the importance of you being there for them when they need you… all of what entails being a parent…  Dec 31st becomes just another night.

You’ll still be ready for bed at 9pm that night.  The kids will still wake up early the next day.

Besides, it’s not that I don’t “celebrate” it… it’s just that I don’t do what everyone else thinks I’m supposed to do. I give my wife a hug and kiss. We say “Happy New Year” to each other and to others as well.

It’s just different and believe me, different is one thing that we’ve become quite comfortable with around here.

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