This is a guest post by Myria, who does not have her own blog but may borrow mine at any time.
My daughter is going into kindergarten next year and I'm scared. I know that if you are a parent you can probably relate, regardless of your child's diagnosis. Specifically, to give a small sample -
I am worried because my daughter does not yet have a way to communicate everything she needs to say. I am worried that her sleep issues will keep her out of school, that seizure activity will be mistaken for purposeful misbehavior, that purposeful misbehavior will be mistaken for seizure activity, that she will become overwhelmed and not be able to participate. I am worried about her being objectified as either the sweet little disabled girl or the problem child. I am worried that her intelligence and competence will be dismissed if she can't jump through the school's academic hoops.
My daughter is not autistic, by the way. She has Patau Syndrome, which means she has an extra chunk of the thirteenth chromosome, but many of her challenges are shared by people with disabilities unrelated to hers - me, for example. I am autistic and she is not. We have some strengths and difficulties that are different, and some that are the same.
I took my worry about next year and did something productive with it - I went to an IEP training for parents of children with various disabilities. Going into a roomful of parents was daunting, both because it was a room full of people I didn't know and because as parents, we can and do get away with a tremendous amount of ableism. At this training though, I was pleasantly surprised. The atmosphere was positive and encouraging. I learned a lot of useful information that will help me with my daughter's IEP team. The speaker was fluent in presuming competence and so were the other parents.
Except for two.
They talked about how difficult life was with their son and how no matter how hard it is, you just got to accept that the child you dreamed about never existed, and you got to be the best parent you can be to this child no matter how hard it is life is so hard we're so disappointed we're soldiering on...
I've heard this before, of course I have. It's everywhere. When my daughter was newly diagnosed and her doctors would not speculate about her life expectancy (at four months old, she had already beat the odds they would have given her at birth), I was isolated in my terror, haunted by images of tiny coffins every time her breath faltered. I went online seeking connection and support, reading along on forums for parents of disabled children. Guess what I found? Autism parents. My mother was great, and for myself I had stuck to the autistic forums, feeling no need to go into the parent spaces, so I had almost no previous exposure to autism parents. I was shocked and wounded and struck with a deep anger. I clearly remember (can't forget) posts I read during that time.
"How can I feel connected to a child I can't hug?"
"How can I love a child who won't look me in the eye?"
"It's like she's not even human sometimes."
How dare they. I was counting my baby's breaths and the seconds between them and how dare they. I was like the child they said wasn't human while I silently pleaded with all the universe that my baby's seizure would stop, that this wouldn't be the last day. Everything that has ever been used to hurt me, to discard my humanity, to shut me up so others could use me as they pleased, I read on those forums in posts written by parents. They couldn't love their children who were like me and I just wanted my baby to live.
I am disabled. My child is disabled. These are separate facts that cannot be separated in my person.
And back to the present day -
I am like the child that so disappointed the parents at that meeting. I sat there and didn't say anything because (like their child, like mine) sometimes I can't, and because a crowd of parents is not a safe place. And then all of the other parents, all of them, and the speaker too, gently turned the conversation around until it was at a place that affirmed the dignity of this child while addressing the parents' concerns. During the course of the conversation, the negative parents slowly adapted their language and affect to match the rest of the parents. Did it stick? Who knows, but it gave them a chance to see another way.
Support is important - but if your support network is poisonous, go elsewhere. If there is nowhere else in person, find people online who support you without dehumanizing your child. They are out there, I promise.
1 Corinthians 15:33: Do not be misled: "bad company corrupts good character."
Myria lives in the Pacific Northwest where she attempts to keep her socks dry. She is autistic and lives in a neurodiverse household (including two cats who live with Siameseness)