A question I seem to be asked a lot lately is why we are doing therapy with Jake. When I hear a question once or twice, I don’t think much about it. When it comes up five or six times, I start to get the nagging feeling that I need to write it all down. I write as much for myself as for our little Jake Fan Club, so this post is as much about me sorting out the answer to the question of “why?” as it is to be informative.
Even as I write, Jake is showing me how well he can hop on the couch next to me (made more interesting by his really stinky diaper), is making his usual motor-boat sounds with his mouth, and is giving loves to Cooper the Bear and Nenny the Blanket. Today is one of the days when he seems so very, very normal.
In fact, Jake often seems so normal that people don’t understand why we are in therapy twice a week, why I constantly tell him to “sit right” when he has his legs bent back, and why tight, tight hugs are necessary if he’s having a rough day.
None of the people who are wondering why we are in therapy are being critical or second-guessing me. I’m so thankful for that, when I’ve experienced so much criticism, irritation, and eye-rolling in the past. It’s been wonderful that people feel comfortable enough to ask, but are understanding enough to not be jerks about it. I really have great people in my life!
So, in no particular order, here are the things that we are working on right now.
1. Echolalia-the automatic repetition of vocalizations made by another person. In non-encyclopedic terms, it means that Jake repeats the last word of everything we say. If we ask him if he wants to go outside, he replies with “outside?”, which may or may not mean he wants to go out. Around 75 percent of his speech is repetitious, which makes it very tough to figure out why he is upset, crying, frustrated, etc. A lot of Jake’s communication is guesswork. We still don’t have a good answer for how to fix the echolalia or if he’ll grow out of it. In the next week or two, we may be adding a third therapist who can help us figure that part out.
2. Hypotonia-low muscle tone. Hypotonia is a fancy way of saying that Jake’s muscles are weak. Which seems not quite right since he looks very muscular. Most kids have at least one layer of fat on their body and since Jake’s body fat seems non-existent, every muscle stands out. I’ve often laughed that he’s the only 2-year-old with six-pack abs. How low muscle strength interferes with Jake’s life is that he has no endurance when it comes to sitting up, he can’t cross his legs or lay on his stomach and support his body with his arms. In school, when so much of students’ lives depend on sitting up straight or sitting cross-legged, Jake could struggle in a big way. Even sitting in a desk for more than a half an hour could fatigue him to the point of exhaustion. We are making progress on this part of our therapy, but we still have a very long way to go.
3. Sensory Processing Disorder-neurological disorder which causes difficulties in processing and responding to sensory information from the environment or from one’s own body. I still haven’t figured out a good way to put this in the non-technical definition. My best shot at it is that Jake’s body is confused and disoriented by his surroundings almost all the time. He doesn’t have a sense of where items are in relation to his body, he feels like he just got off a tilt-a-whirl when he sits still, and many textures freak him out. The way this practically interferes with his life is that he doesn’t want to have the dizzy feeling, so he never, ever stops moving. Which makes him (and me!) very tired by the end of the day. He literally bounces off of things, which is his way of figuring out where items are in almost a reverse echolocation. He crashes into couches, the dogs, bookcases, walls, doors, etc., which is his way of figuring out where they are. The way that this particular problem disrupts his life the most is with textures and eating.
4. Eating. Textures and eating are so related and so difficult that I’m giving them their own category. Since Jake can’t feel his body the way we do, he hates it when it feels even stranger than it does normally. And, stranger applies to textures similar to dust, mud, soapy water, sand, little rocks, etc. It’s been recently that Jake is able to play in the sand or dirt without melting down, can tolerate bubbles in his bath, or getting his hands wet. However, something like applesauce on his fingers still involves a lot of stress and frequent crying. We are requiring him to try to wipe his hands on a towel, his shirt, my pants, the dogs, before we help him out. Sadly, not being able to feel his body correctly also applies to the inside of his mouth. He can’t feel mushy things like pasta, applesauce, a lot of vegetables and since he doesn’t know what to do with them, he completely rejects them. Since he doesn’t want to get stuff on his hands, he resists feeding himself and straight up refuses all finger foods. Except chips. Chips and Cheerios have kept that little boy alive! Mealtimes are still a struggle and I’m lucky if we get down from the table less than half an hour after we start eating, but I usually expect more like an hour of constant prodding, prompting, and coaching.
5. Speech. Jake is still very behind, not in speech, but in enunciation. It’s very hard to understand him and there are a lot of times when I just have to say, “I’m sorry, sweetheart, I don’t know what you need. Can you show me?”. That works sometimes, but not all the time. As his eating develops, so will the muscles in his mouth and he’ll be able to talk more clearly. So, that one, I’m honestly not that worried about.
Since this age, is so foundational for kindergarten, school, and beyond, we are working very hard to make sure that Jake is really ready for life. He has come so far and I’m very thankful for all the help we have gotten already.
I love our little boy so very much and no matter what, I am so thankful that I’m his Mama. He has a lot of strengths and qualities that are going to help him through this bumpy time. His smile and laugh are two of my favorite things about him. As you can see, he’s pretty fantastic!