Sometimes, when I look at K, like really look at her, I just see a 9yo girl. A 9yo girl who has come so far. Who has made progress by leaps and bounds. Who I can trust to take the dog on a walk down the street, or a bike ride to the "second stop sign" in our neighborhood, all by herself. Who talks about fashion, and wants to wear make-up. Who rolls her eyes at me, and acts like I'm ruining her life. Just a 9yo girl.
Then, something like yesterday happens. Perseverating over a boy at school constantly setting off a fire alarm timer (seriously, who's bright idea was it to make "fire alarm" an option on a timer!?). Having a giant meltdown because she doesn't understand why she can't attend a birthday party of one of B's classmates. A meltdown like I haven't seen in a while, where I am lucky our neighbors mind their own business so I don't have to deal with the police showing up, asking why my kid is screaming at the top of her lungs (not an exaggeration) for a half hour.
Or the days she withdraws from us, and wants zero interaction. When she tells us not to talk, and that she doesn't want to talk, either. Where her body just seems so uncomfortable in the world. The times autism doesn't allow us to forget, if only for a moment, it is here.
To some, autism is just a different way of thinking. Not a disability. Not negative. Just a difference. I'd be lying if I said I haven't tried to hop on that train, because it sounds pretty good. Then reality crashes in, and I realize for K, autism isn't just a "difference".
Being autistic, having autism (whichever she chooses down the line) has a negative impact on K's life. It just does, regardless of how wonderful some claim it to be. It has caused other kids to shun my child. It has caused restraints in school. It has taken her out of our community, to a private school an hour away. It causes her heart to break over and over, because she can't understand social rules. It causes her to lash out, unable to handle frustration. It causes her to be overrun with anxiety on a daily basis.
It takes my 9yo, who can do things similar to her peers, to suddenly take giant steps backwards. Always.
Earlier this year we had an IEP meeting where a comment was made in the context of discussing placement. Someone said that K will always be how she is right now, so where she is educated doesn't matter (ie, she can be in the substantially separate class forever, no big deal). I took issue with that statement. I want so badly to believe that K can be successfully mainstreamed one day. That it does matter where's she's placed, because the right placement now could positively affect where she is down the line. That no one can look at my sweet 9yo, and predict the future. That how dare anyone decide her life for her, or say she'll never learn how to cope.
But, the truth is, maybe I am scared they are right. Maybe for all the progress we see, there will always be steep regression. Regression that will keep her from being truly independent (which she wants so badly). With her peers. Within society. That autism will always have this impenetrable hold, regardless of anything we do. Any school she attends. Any therapy she tries, or med she takes. That as many times as I tell her how smart and beautiful and talented she is, she'll always "hate her life" (her words). You might want to look at autism as just a difference, but that's not K's experience in the world. And it's her experience alone that is authentic to her. No one else can speak to that. No one.
It's been a struggle for me as K's mother to watch lately. As she struggles between being a 9yo girl, with typical 9yo girl interests and attitudes, to being under siege by an invisible thing that won't let her just be. Of course autism isn't something I can separate from K, but it is definitely a difference that has interfered with who she wants to be, what she wants to do, how she wants to live.
K deserves, just like anyone else, to have a chance at the life she imagines for herself. Unfortunately, days like yesterday make it painfully clear how things aren't always in her control. The difference in her brain makes sure of that.
It's just not fair.
Autism isn't just a difference to K, it's a disability. That's the honest truth, regardless of how others would like to paint the diagnosis, or generalize how it affects everyone. No mother likes to see her child hurting, and that's my truth.
Hard stuff. I don't think anyone can tell anyone else what their truth is. It's a spectrum, it affects people differently and people process it differently. Sometimes people need something to hold onto. Maybe that thing is that, for them, autism is not a disability. For some it is and for some it isn't is probably the closest thing to the general truth about autism that there is. What it is for each individual on the spectrum varies.
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