Guest post by Jessica Severson.
When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.
I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.
So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.
Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.
After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.
It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.
We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.
My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.
Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?
And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?
I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?
I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.
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