Monday, April 1, 2013

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There's No Place Like Home, Unless You Have ASD

One year ago tomorrow, CBSnews published an article; What Are the Top Places to Live for People with Autism? The article cites the resource guide provided by Autism Speaks' (hereafter referred to as AS) website, as well as Top Ten Places to Live on the same site.

While I am thrilled that there is such a thing as a resource guide, and a Top Ten available, I was disappointed in the fact that the Top Ten list is part of the AS press release for April 2011 and has not been updated as of today, 4.01.2013. We all know that ASD has been getting much more press, much more visibility, much more recognition in the last two years. And while I don't expect miracles, I would have appreciated a more recent Top Ten.

For families who are willing to do everything, right up to and including moving to another state, getting new jobs, new schools, new providers, and uproot everything familiar for the sake of the potential good the new location has to offer, a 2 year old list just isn't adequate. Don't get me wrong. Autism Speaks has had a lot of impact on the awareness of ASD. But if they're going to keep their "expert opinion", and cutting edge status, don't you think that a current listing would be helpful? But guess what? After doing google searches for longer than I care to admit... I couldn't find anything newer than 2011. Not from CBS, not from LA Times, not from AS, not USNews or WebMD. But all of those sources had something to say in 2011. I'm baffled, to be honest. What made 2011 a red letter year? Especially now, after a phone survey to parents got everyone all het up, and made the numbers of ASD potentially grow from 1 in 88 to 1 in 50. Wouldn't it stand to reason that we need new listings? Makes sense to me...

Now, as far as the AS resource guide, let me tell you - it's a thing of brilliance, constantly added to and revised, not only by those at AS, but by families who live in any given state and use those services. I cannot say enough about it. Hey.. wait. You mean I can click on my state and enter my zipcode and find what I need to know (or the lack thereof) right now? How freakin' cool is that? 18 thumbs up for the resource guide, AS!

Having a child with ASD and other diagnosis' causes parents to constantly reevaluate. Are we in the best place for our monsters? Should we move to upstate New York? Is there some way to get what my child needs medically and for therapy without being more than a million dollars in debt (and if you figure that out, could you please email me? Because we are..more than a mill in debt, that is..)? What can I do more of, at home? How can I rearrange my schedule/methods/perception/ability to better serve my child? Am I doing enough? Am I asking the right questions? Is my child's diagnosis my fault? What more can I do? If I go from sleeping two hours a night to one hour a night, could I get more research time in? Is my child's diet harming or helping?

Sometimes... it's time to take a breather. Sometimes.... even though it's April, and April is sacred because everyone touched by autism is supposed to have a blue porch light and a shiny new bumper sticker that says "I love someone with Autism!" and wear puzzle piece jewelry and change their Facebook profile picture to "Light it up Blue!"... well, sometimes it's time to not do that. Sometimes it's just time to say, I don't need to Light it up Blue. Autism is every day here. And we might move to improve access to resources my child needs. Or we might not, if we can find the resources here. And we might try a different diet for three years, but we might go back to the original if nothing changes after that time. And we won't care what other people say if we eat gluten and casein. Maybe April is a good month for you to just Because really, if we're being honest, does April change who you are? Or who your child is?

continental US map by google images, via searchroots
parents swinging child by google images, via itriagehealth

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