Autism

1 in 68 children is diagnosed with Autism. Chances are, you know a family that lives with this unwieldy thing, and you know that comes in so many different shapes and sizes.

Our family knows Autism intimately. Eight years ago my cousin gave birth to her second boy; a curly headed chub with big blue eyes. He was so unlike his brother; his brother entered the world loud and gregarious. T was quieter. We would laugh about how he would put himself to bed at 8 p.m. no matter where he was, without fuss. His ways were ordered. His younger sister came quickly after him, and in the midst of all the chaos of 3 kids, all under 5, my cousin and her husband noticed that T wasn’t hitting his milestones. That his ordered ways gave way to meltdowns when they weren’t observed. That he couldn’t be coaxed out of his moods. That he liked certain textures. Once you saw a list of symptoms, there was no denying that he was on the spectrum.

My cousin and her husband wasted no time. T was diagnosed as soon after his second birthday as they could get him to the doctor. T was born in a town and a time where resources were scarce, and the only certainty they had was that the sooner therapy starts, the better. There was a flurry of finding aides, setting aside rooms for therapy space, educating family, joining advocacy groups, googling, reading books. We developed a new lexicon for behaviours. There was worry about what the future would bring. Some people criticized them; some people were afraid. I hope most people were supportive and kind, but I would venture that most didn’t understand all the challenges. And on top of managing everyone else’s emotions, there was the rest of their life; two other small kids who had birthday parties and skating lessons and play dates and all the rest. There was a business to run and a house to keep and an extended family to tend to and vacations to be had.  Life only accelerated for them in the wake of diagnosis.

And yet, it all worked. They made it work. T worked hard, his aides pushed him, we all adjusted. His parents doggedly maintained a life for themselves and their other kids. And somewhere along the way, things started to click with T; his speech came along, he started to hit milestones. There was lots of hard days in between, but he made progress in leaps and bounds. I still remember the pride when T gave me a high five for the first time, when he was 5. I felt like I had been invited into his club. Now, I can hug him and joke with him. He goes to school, he’s got friends. Life is not without it’s challenges, but so much has happened already that we were never certain would. And yet, the goal is not to “fix” him and make him neurotypical; it’s to help him live the best life he can. It is the same goal we have for all of our kids.

This is what we have learned of Autism; it brings out the very, very best in families. It is so hard, but the successes are so much more. When our kids are all together it is mad chaos, but autism centers us; we temper our schedules because T needs us to. It gives me perspective raising my own children, reminding me that life is uncertain but you can deal with anything that gets thrown in your path. Mostly, I see T and am reminded that he is a person; he was the same baby we giggled about going to bed at 8 p.m., the same kid who loves to play Lego and Super Mario. He is a kid; he is not Autism. His needs are a little different from the rest of ours, but that doesn’t exempt him from all the love and respect in the world.

Autism is not a terrible affliction; it is a different way of seeing the world and we are invited to try and understand it. To choose not to is to miss out on all the gifts that individuals with Autism have to offer. For me, that is watching T light up talking about something he loves, or giggling with him over silly jokes. These are relatively normal things with most kids, but from him they feel like a really big present with a bow on top. My cousin’s family lives three hours away, so this isn’t my daily reality, but I am glad to be a part of T and his family’s life. I am grateful for the resources he has and the support they get from their community. I am so grateful that T has a brother and sister who love and support him. I am grateful for our extended family who have rallied around him. And mostly, I am so grateful and filled with admiration for his parents; who are T’s greatest champions.

So today, on World Autism Day, let’s celebrate families who share their kids’ struggles and get them through. And let’s celebrate everyone on the spectrum, because they aren’t problems to be solved, they are people to be loved.

To learn more about Austim, and how to support individuals with Autism, please visit Autism Speaks.

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22 comments

  1. Wonderful post. Autism does indeed affect many families, in a wide spectrum of severity. How wonderful that your second cousin (I think that’s what he’d be to you, right?) has such a great support system around him, including extended family members like you. That must mean so much to his parents. Seeking early intervention like they did has been show to be the most beneficial recourse in this disorder.

    Sorry, that was a rather clinical comment, wasn’t it? Guess it’s in my nature. :)

    1. He is my second cousin, but I often refer to those kids as my nephew out of generational habit. Our family is pretty tight knit, so if you’re having struggles, you are going to get support all up in your grill whether you want it or not.

      As for the early intervention, of course it’s difficult to say whether he would have reached his milestones otherwise, but I think his aides have done a terrific job and have alleviated some stress from my cousin and her husband as well. Thank goodness we live in these times.

  2. Great to hear that even in a town with limited resources, they were able to find what was needed for your second cousin (following Carrie’s lead).
    And it’s a great example that some variations of Autism doesn’t strip away the quality of life or ability to live a good life – it just changes the definition a little.
    I hope recognition and understanding continues to grow.

    1. I totally credit my cousin, who is *ahem* vocal. Ok, even she’ll admit she’s got a bit of a bulldog when it comes to these things, and has done a lot of advocacy work on top of the kajillion other things she does with her kids. T is very fortunate that he had early intervention and that he is high functioning, I know some families struggle with much more on their plate.

      And thanks for the link-up! I appreciate you coming in and reading :)

  3. This is a wonderful post! I don’t personally know anyone with autism so it’s hard for me to understand. It is great to hear that your whole family, especially T’s parents, are so understanding and supportive of him.

    1. It is a bit of a mystery, and I remember being terrified when T was first diagnosed. But another friend who has a kid with autism told me one day that she had to stop thinking about the diagnosis and just start addressing her child’s needs. I thought those were wise words; just looking at the individual.

  4. There was a guy I knew growing up who, although undiagnosed at the time, had Autism. I always thought he was brilliant because it was clear he was perceiving the world differently than the rest of us. A different mind is not necessarily a bad mind, and in his case, it certainly wasn’t.

    1. Yeah, I can definitely think back to people I went to school with who were probably on the spectrum. And I think that’s the biggest hurdle to get over; thinking about autism as a different way of thinking. It’s also hard to let go of the idea that your kid might never express affection the way you want him to, but there’s joy to be had.

  5. I need a “love” option – “like” is not enough. I think people have more in them to adjust to different life situations than they give themselves credit for. When something arises, most people are able to rise to the occasion and realize what is truly important. Much love to T and all his wonderful family for all they do.

    1. It’s true; that’s what I admire most about T’s family.. it was just full steam ahead, get him what he needs. And of course; you’re always going to do whatever you need to for your little people. I often have people telling me that about twins too.. I don’t know how you do it. Well, you just do, because you have to, and anyone would.

  6. Your words here are wonderful. I still know people who whisper the word “autistic” whenever it is used, like it’s something not to be mentioned, like it’s something that is the absolute worst thing in the world. Yet the families who it has touched have blossomed and shown what amazing people they can be, have opened my–and many others’–eyes to the possibilities of love and strength and flexibility in the name and honor of a kid who needs it.

    1. I am not going to word this properly at all, but I do have good intentions, I promise.. it seems to me that there’s a gradation of “acceptable” disabilities. People are very sympathetic to most children with Down’s or other types of issues, but we’ve still got a long way to go with autism. I think that’s because it can come with things that aren’t socially acceptable.. the meltdowns, the hand flapping, the bluntness. Hopefully with the staggering number of kids diagnosed we are working toward more acceptance. I mean, how can you fault someone for not being capable of processing information the same way as you do? Life is just different for them. And it is SO hard on families to be ostracized because their kid can’t behave in church or whatever.

      Thanks for visiting and reading, always nice to see new faces!

      1. I completely agree with you. I grew up with all kinds of people/kids with all kids of abilities and issues and places on the spectrum (however is the most PC way of saying this), and I’m comfortable with everyone. Yet I see people pick and choose which seem “worst” to them, and it just kind of…makes it worse, instead of simply different or new to them. Which is so unfair.
        Thanks for this post. I hope many eyes find it.

  7. I enjoyed reading about T. I had to smile, since your description of him putting himself to bed compared to the experience of my autistic son struggling to go to sleep shows that autism truly is a spectrum.

    1. Ha, the flip side of that is him getting up at 5 am! It’s funny how sleep issues seem to be part of the disorder; I guess it all has to do with the brain having to do it’s thing to settle down. I am going to read some more of your blog to see what your experience has been; everyone’s is so varied. Big props to you, though.. I know it’s a hard road sometimes.

  8. Hi Jen! Great post and perspective. It’s not something to fix, only to understand. I’ve become a lot more familiar with the spectrum lately. Hope you’re well!

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