I feel a lot of shame in the confession that I’m about to make, but it represents a personal epiphany that I need to think (write) out. As I process, I’m hoping to gain personal clarity, but also offer insight into the mind of a mother raising a child diagnosed with autism.
First, I know, in my Mamma gut, that Matt has more than autism. I’m not referring to the 7 formal diagnoses he has from the list of specialists we have visited. Rather, I feel there is something that we have yet to unearth, understand, or recognize. That said, I know that autism is one explanation for what we observe in our son that “makes sense” and helps us to socially excuse his behaviors in a way that most people can wrap their heads around. Mind you, I realize there is so much that I don't understand about autism—it is still a mystery to me even though see it up close and personal on a daily basis—but it is becoming a commonly accepted and recognized label that helps me help others make sense of my Matt.
So I’m sitting on a plane flying home from England and I started to read a book called “I Know You’re in There.” I simply read the forward written by a boy who “used to be” autistic and I ended up in tears. He talks about his parent’s patience and persistence in helping him find a cure for his ASD and how grateful he is to have outgrown it. I immediately prickled…not because of what he said because I long for it to be true, but because I recognized at that moment that I am not his mom—I am not doing everything I can for my son right now and the reason is what I feel some shame about.
I think I avoid autism. I think I avoid the uncomfortable space that research takes me to. It forces me to look at Matt like a subject and not my son, but it also forces me to face the uncertainty of his future, stare at what we have yet to understand, and accept that there is still so much we don’t know. That prospect is both exhausting and overwhelming, but in addition to that, it scares me. Instead, I find myself compensating for his challenges rather than looking for ways to fix them. I seek for solutions to symptoms versus cures.
I’m not entirely sure why I do this—perhaps because I tell myself he isn’t broken and doesn’t need fixing. Perhaps because a lot of the “cures” are still just theories…unproven by science, but worked for someone who knows someone who had a son who did something similar to Matt that went away when he made this simple change. Perhaps it feels hard to me—requires a lot of work that I don't know will pay off. Perhaps I don’t like change and dread instability (trial and error). Perhaps because I can’t fathom it can be simple. Perhaps because I think a lot of it just sounds plain crazy. And, perhaps I don't know how to do or feel strong enough to do some of what I know will be required of me to really help him.
I purport that I would try anything, but I find myself avoiding looking for creative possibilities because I cannot wrap my head around them. I find myself resistant to research and reading because it requires me to face my fears about autism and Matt’s other disabilities, and to be open, vulnerable, and emotional. Research sounds logical, and it often is. In this case, however, it is anything but logical—it is deeply, deeply emotional because it is about my son.—my biggest challenge, my hardest mountain. He brings out my demons and somehow reveals the best my soul has to offer at the same time. I cannot figure out how to do what I need to—search far, wide, weird, and deep—to discover exactly what my Matt needs without feeling like it might bury me.
I say that with tears flowing freely, recognizing that this confession might make me sound horrible, but comforted by the fact that this also represents a new resolve. I have to do things differently if I want to get different results. I don’t even know what the first step is. No one can hand it to me, gift me the knowledge, figure it out on my behalf. This is my journey because I have to do something with what I learn—implement by trial and error some of the different theories until we find the things that work for our unique little man. I would love to delegate this, but instead I will continue to thank the dream team we are currently surrounded by and try so hard to be more open and listen more, read more, learn more without judgment, reservation or fear.
Stephen Covey always said “R&I Julie. R&I.” Resourcefulness and initiative. Time to put on some big girl panties and exercise a little R&I.