I think that sometimes people think that because I advocate for self-advocates’ voices first, because I don’t wish for a cure, because I despise terms like “high-functioning”, because I strongly endorse neurodiversity, that I don’t know what “their life is like”. I must have one of “those” kids. That’s the message from various blogs I’ve seen recently, including from The Mighty (one of the many complaints I have against their site).
I do know. I know the meltdowns. I know carrying your child out of the zoo while everyone stares. I know buying locks and video cameras and alarm systems. I know having every minute scheduled because down time is dangerous. I know the communication breakdowns. I know guesswork. I know crying and having my stomach clench a million times over because, without a way for my child to tell me what’s wrong, I missed some sign of illness. I know not being invited to parties. I know IEP meetings and eligibility and advocates and private day school (twice over). I know in-home therapy. I know the choices that have to be made. I know the worries about the future — for both of my kids. I know the exclusion of our kids. I know searching for babysitters at high wages and still not finding someone to take the job. I know the hospitalizations, the psychiatrists, the specialists, the medications, the surgeries, the complications, the many appointments each week (never less than 8-10 in this family). I even know police escorts, multiple times over, which probably doesn’t fall under the usual.
Here’s the thing — I know that the vast majority of that could be remedied by something so close, so easily made, and yet so elusive — by a world that actually accommodates and welcomes our kids. I would never have to fear about Diva’s life after 21 if she was included in a way that led to true friendships and community. I would never have to worry about LM being hurt by police or bullied by peers, if we had a world that relied less on snap judgments and more on perspective-taking. I would never have to scout out locations for family outings beforehand to know if Diva will be able to access them.
I know all that hard stuff, and yet that’s not what I blog. I blog the awesome stuff. I blog the awesome stuff because I genuinely believe that’s what needs to be heard. (And because that’s what respect for my kids means to me, which is equally important.) We know the “other story”. The “other story” is all we’ve heard for years. If you ask someone on the street about autism, it’s “the other story” that they know. That’s the picture they have in their mind. They don’t know the magic of hearing Diva say “get chocolate” with her iPad for the first time, or that LM’s scripts and turns of phrases make me think about my language at another level. They don’t see the way that neurodiverse points of view aren’t just an addition to our world, but something essential to our world. I dare you to see the full beauty and joy of presuming competence, of celebrating someone, of radical acceptance as a child is, right now, in all the pain and good, and not be forever, completely changed.
I also blog about the funny, the heart-lifting, the cheering-rah-rah moments because we have got to stop putting our kids in freaking boxes. We have to stop saying “my child can’t” and “my child won’t”. We’ve got to stop taking this one moment in time and projecting their entire future from it. We need to look at self-advocates and say — what can I do to make sure my child can do that? We need to see a skill and say — “my child can’t do that yet” or “we haven’t figured out the right accommodations to support that yet.” I’m tired of people thinking that a child who can self-advocate must be a child who doesn’t have a lot of needs. I teach BOTH of my children self-advocacy every day. I’m tired of people thinking a child who is verbal must be “easier”. My youngest is quite verbal, and is also quite a bit more complicated. I’m tired of people full-on laughing at the idea of Diva learning about ecosystems or division or even something as simple as signing her name for a credit card receipt.
Those autistic self-advocates? They really, really do know. They live it. Their experiences do count more than mine. Their voices should be louder than mine. They live an experience that I can never know, one of sensory disregulation and ableism and communication struggles and ableism. Yes, I said ableism twice. Each time we say that they don’t stand for our kids, we are being ableist. Each time we tell our kids that they can’t, we are being ableist. Each time we say things like “he doesn’t have anything else to say” and “she’ll only be able to request” and “he’ll never have a job” and “no one else will ever care of him”, we are being ableist. We are saying that because of our child’s disability, they cannot — cannot be loved and embraced, cannot contribute to the greater society, cannot be someone who has value simply in who they are, as they are. I refuse to ever be that mom.