First Steps to Getting Help

Between the time I realized something was wrong and now, honestly not much has changed in 2 years in Will's neurological status. He has grown very big and is moving along at slow pace. We don't really have a true answer to what he "has." Sometimes people ask me, "what's wrong with him?" And then I try to come up with an answer without getting in a pissy-fit about what a rude thing that is to say... Not that I didn't just previously post "something's wrong with Will." But I'm his mom. I know he's deep down a sweet thing and I know he has gotten the short end of the proverbial stick. Everything he does is a challenge and it is heartbreaking to see him grope for words that don't come out; not be able to figure out how to sit down to use a slide; not know how to make his body climb a flight of stairs; not be able to tolerate loud laughter in a room. It's hard to listen to him scream at the top of his lungs about me not letting him open the grocery store's refrigeration units another 20 times. He doesn't know how to control his feelings and takes most of his anger and frustration out on us. He bites my husband and me and no matter what I do I can't get him to stop that painful behavior. He doesn't know how to play with other kids. He can barely play with a toy. I promise I will write a post on the things he can do because he can do a lot of things and tends to amaze me.

At 15 months Will's pediatrician sent us to a speech therapist. She was a nice lady who first told us the word "dyspraxia." She had been a speech therapist for many years and had a lot of experience. She could tell he couldn't motor plan. He had the intention of doing things, but his brain would not send the signals to his body to make them happen. She said he needed as much speech therapy as possible and to start now. She also told us to get evaluated by a physical therapist and an occupational therapist.

The physical therapist Will sees still to this day is my absolute favorite of all Will's therapists he has ever had. She is a wonderful person and really is great with Will. She takes it easy and he loves her. She works with him every week on getting his core strong and helps him practice walking up stairs, among many other things.

Will has been through a few different occupational therapists for various outside reasons. They work on things like pincer grip and getting Will to open his hands up instead of holding them in fists. They also have helped him deal with his sensory processing troubles. Again, I will write a separate post on this awful-horrible-bad monster condition. It is just so huge. It effects every single moment of his life, including sleep.

Around this same time I also got hooked up with Early Intervention, which is a free service for birth to 3 years provided by all states, some under a different name. They do a big formal evaluation of your child and then recommend different therapies that are provided in the home. Their big thing is that they teach the families in their own environment so that therapy can become a way of life. I have really mixed feelings about our experience with Early Intervention, though I would never truly knock an organization whose purpose is to help small children from all walks of life. We just had a few flaky therapists and I don't really know how much I learned from them; most of it was common sense. I will say that the OT who came was a really sweet woman who was great at listening and cheering me up when things felt most desperate. She also helped Will learn how to climb up and down some playground equipment and he really liked her company. When Will turned 3 Early Intervention was over and we have moved past it.

But for a good year we worked with Will and his therapy diligently. Back in those days I hoped he would just be a late bloomer and could possibly even have "Einstein Syndrome." There's another one I have heard dozens of times: Einstein didn't talk until he was 4. And I would send out my prayers and wishes to the great beyond: Please make my child a genius and I can look back on how silly I was when he was a toddler. Wouldn't that be great? Truthfully, I haven't given up hope on Will and I never will. Things move so slowly with him that it's hard not to get discouraged. But there is always hope. Eventually meeting milestones, even the littlest things, really do encourage me and I know it's all worthwhile. I try to visualize a time when he will be able to talk to me and understand and cope with what is going on in the world around him. And he is happy in those visualizations.

A year into Will's therapy not much progress had been made. The pediatrician referred us down to the developmental unit at Children's Hospital in Denver. What kind of wonderful, mind-blowing insights did we get down there? That's the next post!