Although I have been feeling so good about A's progress these days (walking! talking! no feeding tube! no breathing tube!) I have become more and more concerned about her writing skills. Although she is now four years old, she is not writing. Hardly at all. And I'm not just complaining that she isn't writing her letters; I know a lot of children her age can't. What worries me is she can't draw even simple shapes, like a circle, nor can she do simple line tasks like follow a very easy maze. I know I compare her unfairly to her older brother, D, who is a boy-genius (was reading at age three, was able to write legibly at age four) but I also have seen what other children her age are able to write when I visit her preschool class. I have no doubt she is delayed in this area. And with A entering kindergarten in two years (and a pre-K program in one year) I wanted to see what we could do to help her now.
When I took her last month for her four year check up, I asked the pediatrician for a referral for an occupational therapy (OT) evaluation. He told me that most insurance companies don't pay for OT for writing skills (they don't consider it necessary) but that they WOULD pay for an evaluation. I figured I'd get the medically-based evaluation, at Children's Hospital, and if they thought she really needed services I would ask her to be evaluated for OT through the school district (where she already receives speech therapy, physical therapy, adapted physical education, and will soon start deaf/hard-of-hearing therapy).
I should backtrack and disclose that A WAS in OT before. She had OT since her days in the NICU, and was discharged last fall, at the age of three. However, her OT goals were soley focused on feeding. Per her OT therapist, A's fine motor skills were great. And they are! She has always been able to hold a pencil correctly (even at the age of two!), build a tower of blocks, and string beads. I'm not saying that she's perfect; surely there are fine motor skills that can be improved upon. But they have always been good. A's OT issue was eating, and once she was eating and drinking enough that we were able to stop using her feeding tube, we were discharged.
So the thought of going BACK to OT is disheartening, but we went to the evaluation nonetheless. And I'm glad we did. A did great on most of the fine motor tasks (except for being able to use scissors), but had a hard time doing the writing tasks asked of her (ie drawing shapes, tracing lines, etc). She did surprise me by being able to correctly fill in the eyes, nose, mouth, hands and feet on a stick figure, but other than that her writing/drawing skills were not good. Not good at all.
The therapist strongly feels that her inability to write is largely based on her vision issues. A has coloboma in both eyes; that is, she has a small hole on each of her optic nerves limiting vision. We don't know for sure, since A isn't able to tell us yet, but her opthamologist thinks that A is legally blind in her left eye (she probably only sees shapes and light in that eye) and while her right eye is much better, she may have fields of vision missing there. A wears non-prescription glasses (no prescription because she is not near- or far-sighted) in order to protect her right eye. If something happened to it accidentally, she'd be virtually blind. With so much limited vision, A may not actually be SEEING what she needs to write or copy!
The OT still has to write up her report and submit it, but she told me she is going to recommend coming every other week for a few months "to give us some tools". I am considering this good news; surely if A was in terrible shape she's recommend coming in weekly for a longer period of time. The good news is that insurance may pay for it after all; A isn't able to button a button or do a few other dressing skills, and the OT said that insurance usually pays for OT if it includes self-help issues. So we'll see. If not, I'll pursue the school route.
In the meantime, the OT gave us some good tips to try. She told us to have her write at an easel, where she can see the shapes vertically in front of her (I tried this today and still nothing). She recommended playing games like "I Spy" where she has to really focus her vision. Having A color in coloring books, rather than on plain white paper, may help her color in a small area. Finally, things like lacing, tracing, and finger play games may be helpful.
I can only hope that we are intervening in time, and that A can overcome this latest challenge. She can recognize her shapes, letters and numbers, so I know she SEES things on the paper. It's just writing that is hard for her. I guess if worst comes to worst, and she is never able to write or draw, this is the best time for that; in this day and age, there are so many adapted technologies that she can "write" with (laptops, iPads, texting, etc) so it wouldn't be the end of the world. But of course, like all parents, I want her to be as typical as possible, and this means being able to write whatever is age-appropriate for her to do so.