I used to think, not much. But after a Special Needs School Fair last night, and a frustrating genetics appointment this morning, I'm finding that I'm starting to feel like a name is more important than I initially thought. I'm speaking, of course, of a name for the source of Maya's delays. A diagnosis.
Last night the school fair was bustling, overwhelming---a million booths, representing all of the schools that can accomodate students with different needs from preschools to high schools. Dave entertained Maya (they came to make it more of a family trip and less of something-I-was-afraid-of) while I scoured the map of the event, cross referencing different needs each school could accomodate and the neighborhoods they were located in. And then I went to booths and waited for my turn to talk to the representatives from the schools I was interested in.
And while I waited I heard snippets of conversations around me "My son has cerebral palsy and uses a wheelchair" "My daughter is deaf but uses signs", etc. But when it was my turn, I didn't have the right words to use. I hadn't thought far enough ahead, and when they asked about my child's special needs, all that I had were "can't's".
"Oh, well, you know, we don't exactly know what she has . . . some genetic syndrome . . . we're not really sure . . . she can't talk, can't walk, can't stand alone, etc."
And everytime I said it, I felt worse and worse. Who wants to be defined by their "can'ts"?
I wouldn't want to walk into a group of new people, shake hands and say "Hi, I can't run, can't jog, can't do push ups, can't write without starting every other sentence with "and", and can't do mental math if the problem involves a lot of 7's. Oh, and my name is Dana."
I used to think that a diagnosis wouldn't matter, because it wouldn't change who Maya is, and it wouldn't change our plan of action (re: therapies). But now it would be kind of nice---nice to be able to say "She has Abc Syndrome" and then move on. As we get ready to transition out of the Early Intervention program and into the CPSE (preschool) system, a diagnosis would make arguing for services easier, applying for programs easier, and it would help us maybe find other families who are in the same place that we are.
At our genetics appointment this morning, another test came back negative. The geneticist is leaning towards one diagnosis (which can't be tested for), I don't think it's a good fit and I'm leaning another way (also difficult to test for). We may both be wrong, who knows. More bloodwork was ordered, results to come back in a few months.
Until then, Maya remains the same animal-loving, silly girl. She spotted this goat in a store window (yes, a real stuffed goat . . .only on Madison Avenue) and shrieked and pointed until I wheeled her over:
(You should've seen the tears as we wheeled away. She's screaming hysterically, passersby are giving me looks, and I'm saying "It wasn't even a real goat!" over and over)
She really wants to be vertical all of a sudden, and is trying like crazy to get around (here, marching through the hospital hallway this morning with Dad)
And while her form is lacking, she's getting quick with the stroller----and SHE CAN STEER NOW!!!!!!!!!! This is huge . . . it means that she can decide where she wants to go and actually make that happen :)
Notice the proud-as-can-be smile at 0:08, and the steering work at 0:20As always, if you see a blank square with a play button, click play and the video will appear . . .