Lately I’ve been feeling disoriented. Flailing around a bit. A weight has been lifted off. In a sense, I’ve lost a part of my identity.
Now, no one around us knows that we spent 25 years raising children with autism. Unless we tell them.
We can pass as parents who have raised ordinary children. We don’t have to make time and planning in our schedule for speech and occupational therapy. We don’t have to go to IEPC meetings with committees to make a plan for their needed services. We don’t have to make a case for their continued need for social work and pragmatic speech therapy. We don’t have to practice social skills at home and be on the lookout for meltdowns.
We could pass for normal parents. We could let people think that our three adult children are just like everyone else’s children.
Five years ago, we left the community and the church family where we raised them. In that community, we couldn’t help people knowing that our children had autism. We shepherded them around. They needed protection. They needed prompting. We needed to prepare teachers and youth leaders. How to talk to them. That it was okay to interrupt discussions about kittens or video games. A large number of people in our former church knew them. They knew us, and considered us exemplary parents. Parents of utter patience. Hero parents. But of course, they didn’t want to be us.
We couldn’t pass for normal parents then. But now we can, if we want to. If we didn’t want to get too close to new people. Two of our kids want to pass as neurotypical, although autism still affects their social interactions. My son is very successful in some ways. He’s making six figures as web developer. He owns a condo. His sister who lives with him has unrelated health problems, which keep her from working. Our oldest daughter can’t hide her disability. Her job depends on it. She works for a government contractor which employs people with disabilities. Nevertheless, she is a top producer as a high tech chat IT professional.
We could pass as ordinary parents.
Except there are holes. No little league. No travel. No senior class trips. No prom. A lot of holes in our lives and in theirs.
And that is the crux of the matter. That is the foundation of the novel I am writing.