Today, we opened another chapter in the book of Jake’s journey through the maze of Sensory Processing Disorder. It was an encouraging morning and I’m thankful for some very good things that came out of our first meeting with our new therapist.
If you are new to our story, Jake has a neurological disorder that makes processing sensory information from within himself and his environment very difficult. Sensations, especially new ones, cause stress and fear. He doesn’t have a good sense of where his body is in space, making him feel similar to that startling moment when we miss a step, except his senses don’t right themselves in a few seconds. He rarely stops moving, since movement shoves aside the feeling of not knowing where he is in relation to the chair, the window, or the floor. He’s been delayed in many things because of his disorder. Walking came at a year and a half and he still is eating some pureed food and some regular food. Speech is one of his most pressing delays at the moment and the one we are going to be focusing on for a while.
Today, we met Lisa, Jake’s new speech therapist. When she knocked on the door, I went to answer it with “please don’t be weird, please don’t be weird” echoing in my brain and I was very relieved to see how well she interacted with both Jake and myself. Lisa is a warm and lovely person who is going to be a great fit for our family.
As always, on the first meeting, she asked a lot of questions, played with Jake, and got a feel for how we operate during our day. She asked him to do a few things, but mostly sat back to get a feel for his personality. As he warmed up to her, he played with her, flirted with her, and finally talked to her. She got a sense of his speech, which currently comes out in unintelligible paragraphs. She heard the 10 or so words that are barely distinguishable and was encouraged to see him trying to talk. I asked if I could show her how I work with him and so he sat on my lap, ignoring Lisa, as I said different basic words and he tried to repeat them.
Lisa was very encouraging about where we are and I felt comfortable enough to express my concerns and thoughts honestly. I’ve wondered if we really need speech, or if we should still be concentrating on helping him learn to eat. After talking for a while, Lisa and I decided that we would do both feeding therapy and speech therapy at the same time. And, really, all the same muscles are used to talk as are used to eat, so as his eating progresses, so will his speech and vice versa. Helping him to understand that textures aren’t going to turn into little monsters who jump on his head will only improve his desire to eat. As I’ve learned in what feels like the far away past, Sensory Integration Disorder is a jumble of causes and effects which are very difficult to separate out into concrete sections. They all affect and change each other.
Lisa is obviously an intelligent, well-informed therapist, with a great compassion for children and a desire to encourage and educate parents. I couldn’t have been given a better therapist than if I had been able to pick her out myself. She taught me a lot in the hour and half that she spent with us and I’m excited to learn more.
One of the ways my thinking changed today is that I used to see the Jake’s many delays as just part of his disorder, rather than the result of his disorder. His disorder makes him afraid of certain things, therefore he doesn’t do those things, which causes the delays. For example, speech delay was caused because he didn’t like the way things felt in his mouth, so he didn’t put anything in his mouth as an infant. So, he didn’t develop the muscles that would go along with chewing on a table edge or the awareness that the marble is in his cheek. It was a “lightbulb” moment for me as I thought back over his little life and the way he has functioned. It won’t have a lot of bearing on how we deal with his behaviors, it’s just a new way of thinking about it all.
That is only one example of the way that Lisa is going to help me better understand Jake and our journey and I’m so thankful for another good partner. We’ll be meeting every Friday morning for an hour for the next six months and then we’ll re-evaluate.
For now, I feel like I have a huge load off my chest since we have a great therapist assigned to us. I just haven’t been in the mood to go through three or four people until we find the right one. I think she is going to be the one!
So, we’re off on a new leg of our journey and I can’t wait to see how it all goes.
Jake is very excited, too. 🙂