A Reluctant Autism Mom -- and So Much More

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People think of autism moms as fierce advocates. Women who know exactly what to say when someone criticizes their child or their parenting, that perfect combination of words that both educates and shames the person who dared speak up.

We’re angry, but with a purpose. We’re protective. We’re ready to take on the world. We suffer, but it’s noble suffering.

Well, that may be true, but this is truer:

I’m a fierce advocate, but I hate confrontation. I worry that people are going to take out their dislike of me on my child. I don’t know what to say when my child is acting out, because he’s such a strange mix of what people would consider “normal” and Aspie.

A Reluctant Autism Mom -- and So Much More
Credit: gagilas.

One day he may be just like the kid next door and the next he’s like Sheldon from The Big Bang Theory, insistent that I “just need to listen” to him because I’m wrong and he’s right, but he can’t tell me what he’s thinking so I can’t understand what I don’t have right and he’s frustrated and then he’s jumping up and down and his voice is getting higher and screechier and if I don’t figure it out soon they’ll be no coming back from this for a very long time.

I’m angry, but there’s no purpose to it. I’m angry at the world. I’m angry at the school district that was so unwilling to see beyond my child’s strengths to understand that he really does have deficits that needed to be addressed that he didn’t have any supports in place.

I’m angry at the teachers who called him willful and defiant and tried to humiliate him into behaving, into understanding other people’s emotions, something he can’t do and may not ever be able to do. I’m angry that I lost my son for 97 days to three different hospitals. I’m angry at things I don’t even know I’m angry at.

I’m protective, but not just of my child with autism. I have three children, all of whom need to be protected -- and what do I do when what the other two need in order to be protected is to not have their brother keeping the house in a constant state of crisis?

I’m not even remotely ready to take on the world, though I do it because I have to. Many days I would rather stay in my house than go anywhere, because I’m so afraid I might bump into someone I know who will ask the dreaded question, “How are things going?” Because how do I answer that when my eleven-year-old son is in/has just been in/is going to a psychiatric hospital or has been suspended from school again, my husband has been laid off, and I can’t open my mouth without bursting into tears?

I suffer, but it’s not noble. It’s messy. I suffer from a variety of things, not the least of which are guilt and Post Traumatic Stress. It’s a suffering that wracks my body when I least expect it. It’s a suffering that makes me snap at my kids when I’m anxious and sob uncontrollably when I just want to spend a quiet night watching TV with my husband.

Am I an Autism mom? Yes, but I’m a reluctant one. Not because I don’t want to admit it, but because I’m so much more than just mom to a kid with Asperger’s, just as he’s so much more than just a kid with Asperger’s.

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