The clock is ticking. His life depends on it.
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Thursday, April 2, 2009
In my house, EVERY DAY is World Autism Day
I'm not sure if you are aware of this, but I have a child who is Autistic.
You may not know, or even realize it when you meet him. It might take a few minutes. Or an hour. But at some point when you meet my son, you will begin to notice he acts different.
It might be the way he flaps his hands. Or the way he hums to himself. Or the way the conversation he has with you keeps ever-so-slightly going back to the things he likes. It could be because you notice the things he's interested in are younger than he is; or he talks older than his years. You might notice his anxiety.
But, if you don't realize it, that's okay too. That's okay because we have worked very hard to help him fit into society's mold. We have embraced Early Intervention, ABA, ESE, Inclusion, and a myriad of other therapies and interventions. (Thank you, Quest Kids and UCFCard!)
In short, we have worked very hard for you not to notice the Autism.
However, it is a part of him. It is him. Those quirks will never disappear. They may diminish, but they will never fade totally away.
And while it is okay with me, it is clearly not okay with society.
I say that because the media heralds the "Recovery of Autism"; that "Autism is Reversible". I guess in some cases it could be.
Just not in any cases that I know of. That I personally know of.
Not to mention, the cases that are brought out to the media are the young kids. The ones who benefit from Early Intervention. Many Autistic children will benefit from Early Intervention therapies (my son did!). The articles about older kids are usually how they are coping, how they are adapting to society. How they are dealing. Because it is difficult. Because it is hard.
These young kids grow up. They become adults. And while Early Intervention can and does help Autistic kids, those kids get older; and as they age, the therapies, the interventions, the assistance gets less and less, until there is no more.
Until they are totally on their own.
So today, on World Autism Day, while we should celebrate our successes and appreciate how far we've come, we also need to realize how much further we have to go. We need to reevaluate how we help our children grow into and become adults. Interventions and assistance should not and can not stop when they need us the most.
And they do need it. Don't be fooled.
Starting today, let's discuss what we can do, how we can do it, and what we need to do to get this ball rolling along.
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Shash has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy>.
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I just wrote about Awareness day on my blog as well, Autism Awareness Day... were you aware? http://twurl.cc/pwz
ReplyDeleteI appreciate your comments about the 'fact' that our kids are different, and that you are ok with it (as am I as a mum), but evidentially society is not.
I would put it akin to anything that people who are not in the situation personally would lack understanding of. Would I know what goes on for a person who is blind? No. Would I have compassion towards them? Yes. Would I see their condition a little differently than the rest of society because of my own family circumstances? Possibly.
In some ways it really is just human nature, the 'different' is looked at in that way, no matter how 'aware' we are.
So how can we make a difference for our families and our kids? In my opinion surround them as much as possible with the people who understand and appreciate, and can see past the condition to the child, and not let the rest of the world get to us (and them).
Karen Francis
You wrote: "In short, we have worked very hard for you not to notice the Autism.
ReplyDeleteHowever, it is a part of him. It is him. Those quirks will never disappear. They may diminish, but they will never fade totally away."
That totally resonates. This week I wrote about the guilt I feel that Mr. Busypant's mild autism is only mildly a pain. I love his quirks. It's what makes him so freaking creative and brilliant.
this is a GREAT post! I agree that we need research and understanding perhaps about the cause, and resources and intervention while they are young, but we cannot neglect them when they are older... and older. kids on the spectrum grow up into adults on the spectrum, and i fear that adulthood is where the resources and supports and funding are highly lacking! My child is almost 14 and im worrying about it already :)
ReplyDeletePS - love the picture of you 2 - very sweet :)