Oct 29, 2015

Being a Special Needs Parent and a Photographer

I'm a special needs parent. Though I don't blog about it often, each of my days revolves around this fact. Every week has its challenges: cystic fibrosis treatments, medication for CF, ADHD, and mood, doctor's appointments, psychiatry and therapy sessions, plus all the necessary wrangling with insurance and pharmacies to make them happen.

Then there's my complicated little engineer, Peter, who has flummoxed teachers, therapists, and special education professionals. His behavior vacillates from exuberant, sweet, and charming to distracted, angry, and destructive in a matter of seconds when he is triggered. I think I may be on speed dial at the school, and I've been to the principal's office more times than I care to admit.

Through the years, I have adapted to parenting my son as best as I can, though, when my husband and I separated and I became a single parent, it got harder. The meltdowns and the instability of my son's behavior mean that I am always on call, at work, on a shoot, or on vacation.

Yesterday, Peter's dad and I received the results of an extensive battery of neurological and psychological tests that we had done to give us a better direction on treatment options. The evaluator said, "I won't torture you by waiting until the end of the appointment. I see Asperger's disorder and also bipolar." Then, we spent the next two hours going over the data and examining how these diagnoses explain the what's going on with our child. The puzzle pieces finally had names, and although I'm still processing the results, I know it's going to make a big difference for our future.

I took this portrait last Saturday of my son at the Southeastern Railway Museum in Duluth, one of our favorite places to go because my son is obsessed with trains, really, obsessed. And though I know that it's a beautiful picture, it means so much more to me because it encapsulates my son in ways that aren't obvious to the casual viewer.

First there's the trains, a fixation that Peter has had since he was 3 and which we now realize is hallmark of kids with Asperger's. Then there's the stuffed puppy, who, like the dozens of other stuffed animals at our apartment, is a comfort to Peter who deals with overwhelming emotions everyday. I was in charge of the engineer outfit, but my quirky boy decided it was also appropriate attire for church the next day, and yes, I let him wear it because we were already late and my Mormon church family loves Peter however he dresses. Then there's the smile, which doesn't tell the story of the tantrum that occurred only 15 minutes beforehand because he was done taking pictures, but I wasn't. Fortunately, the mood shifted and this was one of the last frames of the day.

Making portraits like this is kind of like having a lifeboat in an ocean of special needs, at least for me. It's my way of holding on to the best, most beautiful moments, even though many of the other moments are challenging. I've got a lot of research to do now, and learning, and earning to do as we embark on new treatments for Peter's diagnoses. But for now, a train, a kid, and a stuffed puppy is enough. Good night.