The last month I have been quiet on the therapy front since there hasn’t been much to say.
We’re still doing therapy and it’s still a lot the same. Jake improves in his eating, talking, and physical developement, but it is still sluggish. I often feel like I am a spectator at a race of turtles. Do I cheer at every microscopic step, or do I slump over at the sheer boredom of it all?
I cheer. I cheer all the time! Even if a lot of the time, I think to myself, “Am I really cheering on a tiny person as he masters eating a bite of jello without gagging?”. Even if it is microscopic improvement, it’s improvement, and I’m so very proud of our sweet Jake!
We are currently in a holding pattern with the school district to see what, if any, further services Jake will qualify for. The district will only treat diagnosable health problems and Sensory Processing Disorder is not yet a diagnosable health problem. If Jake were autistic or delayed by more than two years, instead of his one year delay, he would be guaranteed services without question. However, there is no SPD box to check off on the forms, the therapists are trying to figure out the right way to word all of Jake’s delays so that they are recognized as something that would screw up his education. For example, Jake’s lack of strength in his core (hypotonia), isn’t a big enough deal for the school to pay attention to now, but it will be a huge problem when he can’t sit up straight for six hours in a school day.
The problems we are seeing now are going to require more than our current speech/feeding therapist can handle. So, we’re waiting around (and calling every few days to remind them that I’m not going to go away) for the therapists to figure out how to get us the services we need.
We’re also waiting for an opening the elite of the elite developmental pediatrician’s schedule so that we can get in for an official diagnosis of Sensory Processing Disorder. Everyone else has told us that SPD is what we are dealing with, but it would be similar to the difference in the radiologist telling you that have cancer and an oncologist telling you that yes, you do indeed have cancer.
In the meantime, Jake continues to be his sweet and funny self. Every time I pick him up from the nursery, I hear a new and funnier story of something he did and I’m so glad to see his teachers at church love and genuinely light up when they see us coming.
Every night I go in and pray with Jake as he is going to sleep. Most of the time, as I’m praying, I feel a tiny finger poke me in the face and hear him say, “eye, nose, mouf, nack, hairrrrr, nostrilllll…amen!” I get laughing so hard I can hardly talk and I know that our prayers make God smile, too.
So, that’s about all for now. I won’t keep you waiting so long for the next update. 😉