If your kid was anxious or being bullied, how would you feel? Probably pretty bad. Your heart would ache, and though you'd be strong for your child, you would be crumpled inside. You would be heartbroken, yes? I would. It is how any loving parent might feel.
So why is it when a parent of an autistic child expresses their own pain as a parent, she is vilified?
If you are not involved in the online autism community, you are probably confused by this. If you are the parent of an autistic child, you are probably nodding your head. You've heard this argument before.
How can you possibly be talking about your own need for support? It is so much harder to be the autistic person.
Pain is not a competition
My son's struggles are not mutually exclusive to mine. We can both be hurting, just as we can both be joyous or scared or hopeful or all of the above. I do not deny my son's challenges by recognizing my own.
Moe gets frustrated. His communication challenges make things very difficult for him. And when he is frustrated or unable to tell me that he is hurt, or uncomfortable, or bored, or he doesn't understand why I'm asking him to do something, or not letting him have m&ms at 7:00 in the morning, he can get aggressive. He cries, and bangs his head. He scratches me and bites his hand. He is strong and it is scary.
Of course I know he's hurting. Of course I know it is hard to be him. I am his mother, and I—as much as is humanly possible—feel his pain. I do not know what it is like to be him, but I see his struggle and I would give anything to make it easier for him.
Moe had three stitches in his forehead a few years ago, and, despite the numbing cream, screamed out in pain at each needle poke. I did not feel his physical pain but I will tell you this: if I could have taken that pain instead of him, I would have. It hurt me to my core to hear him scream. I remember that sound perfectly, though Moe has certainly forgotten it by now. This is no different.
Your feelings are legitimate
You are allowed to have feelings.
Let's say that again. You are allowed to have feelings. Not just your kid. Not just everyone around you. You.
Let's get real for a moment. Raising Moe is really hard. We have no real schooling options. We have made a decision to try some pretty serious medications to help keep Moe from hurting himself and others. I worry about Moe's future and the lack of housing options for him as he grows.
And it is really, really heartbreaking and stressful when your child attacks you. And it is even more heartbreaking to see that child hurting his sister, or himself.
So you know what? I get to feel those feelings of fear and stress and heartbreak as they exist. They are genuine and legitimate and no one gets to tell me otherwise.
Feelings are not inherently good or bad
Feelings just are. I can control how I react and use those feelings, but I cannot help having them.
Why is this important? Why give voice to what might seem a ridiculous discussion to anyone outside of this community? Because these kinds of arguments are tearing apart a community that should be working together. Because when you tell a mother that she shouldn't feel stress or anger or grief, you don't change her feelings, you push those feelings to a place of guilt and shame where they will simmer until they boil over. You deny a father the support and help he needs to be able to put his energy into helping his children. Because ultimately there is no one else. We as parents bear the burden and the joy, the responsibility and the privilege of caring for our kids.
And we're doing the best we can.