I Don’t Know – Three Bad Words in Autism Land

I think, today at least, that the three most frustrating words in Autism Land for a mom must be – “I don’t know.”

Driving home today with Lil D after I picked him up from school (after the day he had, a bus ride home was out of the question), I called my husband and was telling him about the awfulness that had been escalating for the past five days. There were things happening similar to the horrible self-injurious behaviors, potty accidents, and withdrawal from the world that we had struggled with all of last spring. We have had these bouts on and off since coming through that most difficult time. And each time my panic level rises. I start going through my head all the things we’ve researched, all the behavior data in front of us, all the potential things that could be wrong, all the things we’ve tried, and the numerous things we haven’t tried.

As I drove, I postulated various theories to my husband (What if it’s this? What about that?). We have been helping Lil D manage his autism for a long, long time – 10 years and counting. When you first get that diagnosis, parents are also told that the first few years are the most critical ones to do interventions – that your window of helping your child obtain speech, make improvements, have social gains and all that good stuff depends on finding the right mix of critical therapies those first few years.

And that’s just what we did – availing Applied Behavior Analysis , speech and occupational therapy, verbal behavior therapy, most of the biomedical interventions that were being used at the time (but some we didn’t do for our own reasons), special diets, and all the different prayers and faith-healing that were suggested to us.

We also learned very well what most autism families know – that this is a marathon, not a sprint.

There are new things being researched and discovered about autism as each year passes, but not nearly enough to keep up with the increasing number of autism diagnoses (1 in 88 now). For our family, the main question now is not why is this happening (though that is a hugely important question) – but what do we do? How do we help Lil D? According to some, he is past that “window” of optimal therapy. But that doesn’t mean case closed on Lil D.

Far from it.

There are things that work, and things that don’t; things we know to be true about Lil D, and things that keep changing on us. Things that I want to try, old therapies I want to revisit, and things we wrestle with all the time. What are our priorities? What are our goals now? How do we do what is best for Lil D and Amal and Hamza? How do we plan for the future? What will that future be?

God only knows. And, I wish He would let me know. Because today, I don’t know.

Last night, after making it through a trying day, after switching gears from helping Lil D participate in his weekly Sunday “Open Gym” program (and discussing the latest in our autism challenges with fellow parents), then rushing home to take Amal to a birthday party and make light conversation with the moms there, we faced our semi-regular dinner time battle.

Lil D didn’t want to come down. I wasn’t about to feed him in bed. So I improvised. “Let’s have a picnic in Lil D’s room,” I announced to the family. We took everything upstairs and sat on the floor to eat as a family. Lil D sat next to me and ate with us too.

Yesterday, I knew what to do. Tomorrow I’ll figure things out. Today, I don’t know. I just don’t know. What’s our next step? I don’t know. I hate that feeling.