Saturday, April 2, 2011

Autism Awareness

Today is World Autism Awareness Day.  I've been following several blogs and Facebook pages about Autism. Everyone is sharing about what Autism is for them. From what I'm reading, the push is for more than just awareness, but understanding and even more importantly: acceptance. I can jive with that. There is nothing that a parent wants more for a child that doesn't quite fit into the norm than to be understood and accepted. To be helped along the way and loved. That acceptance can be a hard thing sometimes to give to your own child, let alone someone else's so I gratefully accept the help I do get with my children.

I don't feel particularly qualified to speak on Autism because although I've been a parent for eight years, we've only had the ASD label for 6 weeks. I was perhaps a little more aware of what Autism was than I might have been because our friends were already living with it. So, when our 4 year old was finally diagnosed just after her birthday, I wasn't particularly surprised. When talk of my eight year old being on the spectrum started, I initially dismissed it but it makes sense. We're still waiting for an official diagnosis, but I suspect it will come soon.

Autism is a spectrum and it shows up in many, many different ways. My kids are not at first glance what many people think of as Autism. They show great amounts of affection. They don't typically avoid eye contact... or at least not mine... I suppose they do some. They don't flap their hands. We can hide it if they're in a really good mood and if they're in a bad mood, we just look like bad, out of control parents. But that - besides their blond hair and stubborn personality is about where my kids' similarities end.

Miss Finn, our 4 year old can't yet speak. Not well enough to express herself very well, anyways. We are waiting anxiously for her speech device to come at the end of the month, hoping beyond hope that it will make the difference we think it will. She struggles to contain her emotions. She rarely plays with toys. She's developmentally behind in pretty much every way. She was tubefed as a baby. She seeks out small, confined spaces to calm herself. She hits herself when she's mad. Bites herself. Bangs her head. Screams. But she's gorgeous and adorable. And we love her, as does everyone else that meets her, it seems. She has an uncanny way of sensing when a person is hurting inside and finds a way to comfort them. I'm not sure how she knows, but she really seems to. It's a skill I hope she doesn't lose as she picks up the more mainstream skills that we all think she needs. We never know what will set her off, but tantrums have become an everyday part of life.

Will, on the other hand, hit most of his milestones on time and even some - like reading - a little early. As a toddler, he played differently than the average kid and is just now learning how to pretend play. Will struggles with friendships, in fact he would tell you that he has no friends at all. None, despite the school's repeated attempts at facilitating them. He doesn't always handle his emotions like an 8 year old probably should. He often seeks sensory input and struggles with anxiety and perhaps, at times, a bit of depression. He seems scatterbrained and hates doing many of those simplest everyday tasks, but he's very, very smart. Gifted smart, even. He's predictable. He likes routine. I know how he's going to react in almost every situation. Several people have suggested he has Asperger's, including the school psychologist... we should know soon either way if he fits... but the latest screening test suggested that he probably does.

What must it be like to be Nate, our middle  and neuro-typical child? He's a clever, happy kid with lots of friends, but we worry sometimes that he's getting lost in the shuffle. How do you give him what he needs when his siblings demand so much more than he does? We do our best to love each child the same, but their needs vary so greatly that it's often difficult - or even impossible- to be fair.

And that is what Autism looks like for us. We're still learning what it all means in our family and are not sure what it will look like in the future. We hope it means three independent, productive adults, but only time will tell. If not, that's okay too. We'll learn to make it work. In the end, the label is less important to us than one might expect because although it explains certain behaviors, our kids are still our kids and no name or label or disorder will ever change that.


  1. oh- and can I just say that that is one of the most gorgeous pictures of Finn I have EVER seen. She really is spectacularly beautiful. :)

  2. Thanks to Tara for sharing your story with me. I wished more people understood better.

  3. Hi Amanda - I'm Tara's Mom as you likely already know! Your children are so beautiful, and I know that God chose you because you are the best parents for each of them. Thanks for sharing. Hugs.

  4. Tara took what I wanted to say!
    Love you guys lots.

  5. What a great story - thanks for sharing and spreading the word. You kids are beautiful by the way.

    1st time visitor and not the last

  6. Well said. I agree with everyone's comments God knew you guys were the best parents for these special kids. This Auntie sure loves them.

  7. This was a great post - I want everyone to read it!! Your kids are each so beautiful and precious. Thanks for sharing and helping us all to understand autism spectrum disorders that much more. Hugs!