Last week was a big week for us~ I contacted our school district for information on enrolling Little A into preschool! Someone from the Special Education department emailed several forms for me to fill out, which I then had to return along with copies of Little A’s birth certificate, social security card, my drivers license, and her immunization chart. I have a pre-evaluation meeting with the school district’s diagnostician on Tuesday, February 6, to discuss how Little A’s evaluation will go. I am so nervous, but only because I want everything to go smoothly and I know my daughter. It won’t.
On Thursday last week, Little A saw her eye doctor. He wasn’t able to do a full exam, because Little A fights so hard, squeezing her eyes shut and shaking her head from side to side, so he referred us to a research clinic. He told me that they have equipment there that he doesn’t have, and will be able to tell us with 100% certainty what her vision is. His concern is that, from the little he was able to see of her eyes, she’s developed astigmatism. He hopes to be able to avoid glasses, but in order to know exactly what we are dealing with he said I need to have her checked out in Dallas. So, she goes in on February 9th for another eye exam. Fun times!
Little A is using her Sure Steps more, and though she still doesn’t like them I really think that they do help her with stability when standing and walking. Her favorite thing to do is to take her shoes off and slam her Sure Step-clad feet onto the hardwood floor! I’m hoping that by using the Sure Steps every time we put shoes on her, she will become used to them and they won’t bother her as much.
My fundraising class is going very well, and I received an email today reminding me to apply for graduation 🙂 I still find it hard to believe that I’m almost finished with my masters degree. I didn’t walk across the stage to accept my diploma when I finished my undergraduate degree because I was living in Colorado and couldn’t afford to fly back to Michigan (I applied too late to walk the semester I actually finished classes, so had to wait until the following semester), but I am going to fly to Michigan for this one. My momma wants to see me walk across that college stage, and I’m going to see to it that she can.
Which leads me to thinking about school and Little A. I want her to have all of the opportunities that I did, and I want to surround her with teachers who will support and encourage her. I’m not sure that the public school system is the place for her, but that is where she is going to start and then we will see. She may not excel academically, and she may not want to play sports or try out for dance or theater. But I want her to have the chance, if she wants it.
Since learning of Little A’s diagnosis, I’ve done my best to surround myself with other families with children with Down syndrome and immerse myself in online communities of parents of children with DS, and CHD, who have walked similar paths and can offer suggestions and support. I want to learn from others who have been where we are headed, so that it will be less scary and I can be a better advocate for my daughter. What scares me is that I don’t know enough, that because I don’t know what I don’t know I am somehow taking away opportunities for Addi Grace. Have any of you felt this way? Tell me your story~