On niche communities

I'm feeling grumpy this week, for a variety of reasons. Please don't take this post personally - it's a vent, an expression of where we are these days.

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I live in a swirl of little niche communities. Pagan, Pagan parent, special needs parent, complex medical needs parent, natural parent, engineer, writer, hacker.... I'm never sure whether the things that fill my timeline even come into other people's field of vision if they're not part of that specific little niche.

I have a pattern, this time of year, of feeling like I don't fit in anywhere - like being stuck in the overlap of all those niche groups means there's no place that's really mine. Maybe it's just that the weirdos come out this time of year and say things that leave me feeling more marginalized than usual, I don't know. But it's something I struggle with year after year. This week, I have a good concrete example of the sorts of things that make me wonder where I really belong.

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Yesterday was Autism Awareness Day. As prevalent as autism spectrum disorders are, does anyone really think there are people in this country who don't live under a rock in a forest (a la "The Village") who don't know that Autism exists - who don't know someone who has been diagnosed with a spectrum disorder (or someone who would have been were they in school now instead of 30 years ago)?  I'm still trying to figure out what it is they're trying to make us aware of, because most awareness movements have a clear statement on that, and this is one I'm just not getting.

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The other Julia Roberts started a movement over at Support for Special Needs called "more in common" to point out how parents of children with special needs have a lot in common with each other, despite our children's different diagnoses, and that we should work together. Julia, I love the work you're doing, but what I'm about to say about something going on here in Michigan will show you why I think we probably actually have less in common.

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In honor of Autism Awareness, the state of Michigan has three bills moving through the house and senate, mandating coverage for certain types of therapy for children with an ASD diagnosis, and offering to reimburse those costs to insurers up to a certain amount.

The amount of privilege in having a child with a diagnosis so common that your groups can afford paid lobbyists is astounding.  The fact that this is laser focused on kids with ASD diagnoses, without providing for anyone over 18 and without giving the rest of us a hand up on getting therapy paid for is painful. I know the Autism community, like many disability communities, has a disconnect between parents of children with various conditions, and adults living with those conditions and advocating for themselves, but this particular situation makes it clear to me who thinks their view is the most important.

Comments I've seen in some places claim this is not discriminatory, because kids with Autism need therapy. You know what? My kids need therapy too. 

Other comments have come out and said things along the lines of "my kid deserves therapy more than yours because he has Autism, it's not like he's retarded" - and those have left me picking my jaw up off the floor.  

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Here's the thing. Acorn is clearly not a candidate for a spectrum diagnosis (and all of his therapists agree) - and that's even though he's non-verbal, has issues with novel situations and routines, and has some sensory issues (which may or may not be sufficient for a diagnosis). All of his issues are caused by other medical issues - his trach, his prematurity, his anxiety (which is secondary to medical trauma to begin with). He could benefit from more therapy with no annual limits, as is proposed in these bills...but he can't have it, because he isn't on the spectrum.

There are only a few hundred kids in this state with trachs, and not all of them are like Acorn and Leaf... there are more kids with ASD in our county than there are kids like mine in the whole country.

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Does anyone else wonder if there's some failing in the way we raise kids if 1 in 88 of them is affected by a disorder that makes their functioning in society in question? That maybe schools ought to approach learning in a way that takes neurodiversity into account on a regular basis, rather than going through so many IEPs?

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Leaf's speech therapy will be limited because medicaid will not pay for in-home speech and her doctors will not allow her to go to outpatient therapy (and going to outpatient therapy for one type, even though it's not available at home, means we lose the determination that allows her to have the rest of her therapy in-home....clearly she's not home bound if she can go to speech therapy). So do we risk her health, or get her the therapy she needs?