Some Perspective

For the first time in a long time I finally feel like somebody "got it" today. Jordan can be pretty hard to explain, and of course she doesn't always "perform" for doctors and therapists, but of all people, the speech therapist really gave me some hope today.

When we first started realizing Jordan was having delays we slowly lost the dream, item by item, of having a "normal" child. By the time she entered Early Intervention at 10 months of age my dream was for her to hold her head up and sit up by herself. By May of this year (17 months old) my dream was for her to not "freak out" when I touch her.

Partially because she can't or doesn't see, and partially because of primitive sensory issues, Jordan is extremely sensitive to touch, and every time she is touched (initially), she has a negative response: screaming and arching. By talking to her calmly that response can be minimized, but it still happens. When I first really noticed it this spring I thought she was "angry" when she was touched, but then I learned that it was a reflex. And while relieved to hear it wasn't because she hated me or because she was in pain, but because she can't help it, I still don't like it and was worried that there's nothing we can do simply because it is a reflex.

But after her speech therapy appointment today it looks like we might be getting some help. In the fall she will start weekly occupational therapy & speech therapy, and our initial focus will be to "desensitize" her, then teach her how to respond properly to touch. The occupational therapy will focus on her body, and speech will focus on her mouth & face -- with the hope of one day (along time from now I'm guessing) allowing her to eat orally again, even if it is just a little bit. One of the techniques we will use to "desensitize" her will be brushing therapy.

But first we have to get clearance from the neurologist and make sure that sensory stimulus isn't causing her seizures in the first place. I hope he gives us a green light, because more than wanting her to hold her head up, I'd like to be able to pick up all 26.5 pounds of her without her stiff as a board & screaming for the first minute. Now that's some therapy I'm excited about! Such a simple hope for Jordan, but when you think of it, it's all relative. I never imagined how excited I would be at the idea of picking up my daughter. Perspective, I guess.