I was asked a thought-provoking question, and I wanted to elaborate on the subject. If we are not interested in "curing" Jake, and if we want to accept him for who he is, why am we pursuing treatment and therapy?
Jake's issues are social, not physical or medical (hopefully). They are subtle, and if you don't spend a lot of time with him, you may not notice them. But they do affect his ability to function and sometimes to be happy. Jake wants to interact with other children, but trying to do so overwhelms him and he may end up isolating himself. Jake wants to ask for a banana but trying to do so is a long and drawn out frustrating process that ends with a meltdown that may last for hours. Jake wants to stay at the zoo and is running excitedly from one cage to the other identifying all the animals, but because a busload of boisterous students show up for a field trip, he ends up hiding in the bamboo and quickly becomes hysterical if I try to remove him. Watching him engage in stimming behavior for hours and showing little interest in anything else is worrisome as is his constant parroting and the fact that he has no expressive language. He has weaknesses that we simply want to help get stronger, we aren't interested in changing his personality or who he is.
If a child is born with a weak arm or leg, the parents opt to do physical therapy. It may be a tiresome process, but the physical therapists make it fun and they use games to make it enjoyable for the child. Nobody questions that this child needs therapy.
I never thought that I would meet with so much lack of support or even an acknowledgement from my family and even resistance from my friends and it is wearing on me and I'm sure my frustration is apparent in these writings. At least my grandmother, Jake's Mamaw seems to be on board (except when she's laughing it off or embarrassed because i mention it in front of someone else). She spends more time with him than anyone else besides Steve and I, and she can recognize that some intervention like speech or occupational therapy is needed. She is such an amazing source of support and understanding for me and I'm so glad to have her. Her 80th birthday is tomorrow. Happy Birthday Mamaw!
Tomorrow I take Jake to the pediatrician in an attempt to get a referral to a specialist. I am very apprehensive, not only because I have no idea what I will be told by Dr. Ho, but because Jake just does not do waiting rooms or anything else that involves waiting. Dr. Ho's office tends to have a long wait-time and I'm afraid he may melt down quickly. However, Jake has a way of surprising me when I'm nervous about how he'll handle a situation. I may call ahead and ask if there's a way to avoid the long wait. Update tomorrow.
