State of Mind

Since Emma has started occupational and speech therapy, Rodney and I have been learning about all kinds of therapy methods, tools, and equipment. Emma even gets to bring some of it home. A friend whose child is further down the therapy road has given me the heads-up on a few things which has been helpful. He even suggested early on that when we get to borrow equipment, we should use it on Ethan, too! So we do! Mommy even uses it sometimes. I had no idea that Emma's therapy journey would allow and require so much of our own direct involvement as parents. I just thought Rodney and I would be taking her to appointments and speaking with therapists about how she's doing.  

This whole thing has been quite a paradigm shift for me. It started with acceptance. Then, it was blind commitment and trust in professionals. In hindsight, I think my acceptance was misplaced. I had accepted that there was a "disorder," and that it might always be there. Sensory Processing Disorder means that there is disorder in the way that her brain processes her environment through her 5 senses. Although I do accept that there is a "disordered process," I have begun to see that therapy will either work, or it won't, but we will have worked. And that can't possibly hurt. Even if we saw no progress, I'd feel much better knowing that we are doing everything we know to do. I can see a lot of progress since we started, so either "Therapy Works"...or Emma is just growing into her senses. Frankly, I don't care which. Progress is good.

 Now, I've decided that I don't accept disorder. I will keep ordering. I want to be the calm in Emma's storm. When a storm comes, I don't just want to accept that there is a storm. I will not just stand in the rainy, stormy night with my daughter, waiting it out helplessly hand-in-hand.  I will lead her to shelter or die trying. And when Emma is grown and she's ever alone out in a storm, I don't want her to process the storm or accept the storm. I want her to learn to set aside the overwhelming physical senses and listen to the quiet within. I want her to learn to accept that she won't always understand a storm until it is passed. I want her to accept love. I want her to accept help. I want her to hear a voice inside her heart that tells her that she is more than enough.

One of the first simple but amazing therapy tools we learned was the "thera-brush". Rodney came home with a small, white, plastic brush with soft, white, plastic bristles. He showed me and explained exactly how it was to be used. He said we were to apply moderate pressure and make long strokes down each of her limbs for ten reps. Then, he showed me the joint compressions. We were to take her wrist in our hands and gently but firmly pull her joint, out, in, out, in, for 10 reps on all major joints (wrists, elbows shoulders; ankles, knees, hips). This combination of stimulation is supposed to strengthen the brain's communication with the body.

Fascinating, really. The body's largest organ is the skin, so it makes sense to think that it could have a significant effect on her brain. The regimen was to be fairly intense and then lessen as time went on. She was prescribed the therapy brush with joint compressions 8 times a day for 4 weeks, 4 times a day for 4 more weeks, 2 times a day for 4 more weeks after that, then one time a day for 4 final weeks. Then, it could continue as needed or requested. That first 4 weeks was a tall order, given that she had just begun school and we have to work, of course. Since her legal accommodations had not yet taken effect, there was no way to get her a school therapist to do the sessions throughout the day.

I know schools have a lot of legal policies and security measures to navigate, and I'm glad for the precaution and protection. When I informed the principal about her new therapy regimen, she politely told me that it was impossible to get a therapist in that many times even if she had the accommodations in place.

 So, I came to her school and did her therapy myself. I could only come one time a day, but I thought that was better than nothing. I'd rush over at lunch, sign in, get my visitor's pass sticker with my I.D., and go get her from her classroom. They didn't have a private therapy room, so we made due in the principal's conference room when she didn't have a meeting. I'd get Emma undressed and do all of her skin brushing and compressions, and then hurry and get her dressed again. I liked to finish off with some jump-and-jacks, crab-walks, and wheelbarrow walks (exercizes I know her occupational therapist uses). I'd pick up her feet and push her like a wheelbarrow all around the conference table. It was fun. And I thought it might help her to get some of that energy out, re-group and hope for a "green monster" day. Then, I'd walk her back to class and be on my way.

I was in a hurry to get back to work, but I always at least peeked into Ethan's classroom to see how he was doing. He always looked so happy and busy. But...one day, he got off of the bus and the first thing out of his mouth was, "Why does Emma always get a green sticker with your picture on it every day, and I don't?? I want a sticker, too," and he cried. My poor baby! I stopped right there on the street and lowered my face to his.

"Ethan...oh, my gosh, honey, I am so sorry. I didn't know you wanted a sticker. I always give my pass to Emma when we're finished with therapy because she wants it. Mommy just comes to see Emma because she has to have her therapy. How about if I start bringing a special sticker every day just for you? Would you like that?"
"Yes."
"Okay." I thought my heart was going to fall out. So, from then on, I signed in and out twice just so I could get two stickers with my picture on them. And I loved seeing Ethan's proud face when I came to give him his sticker for the rest of those 4 weeks. :)