The past few months have been difficult. I’ve had to advocate on behalf of my daughter with her school–which included consulting an actual advocate through PATH–to allow her access to a general education preschool classroom; I flew home to Michigan to see my uncle, only to find out that he died the day Little A and I arrived; my baby girl is about to celebrate her fourth year on this earth. And I have been ill-prepared for all of it.
Our time in Michigan went by much too quickly, but we were able to spend time with many people. Little A met my lifelong friend, Chris, and his wife and children; she met many family members and family friends, and she met my cherished boss and manager from Mac Wood’s Dune Rides (and Meg, too!). We had so much fun and so many laughs, and it was hard for both of us to leave.
Since our return I have been kept busy with holding Little A’s school therapists, and the school district’s diagnostician, accountable to the IEP that we all agreed to. It has been five weeks, and Little A has not been evaluated for assistive technology. Just because the school has until April 15th to conduct an evaluation doesn’t mean they need to wait until April 14th to do it, and yet that is what they intended to do until I began emailing every person I could think of within the district.
I also sent reminder emails to the school therapists to prompt their emailing of progress updates. How frustrated do you think I was when I opened each email and they all began with “…you should have received her nine weeks’ progress report…” REALLY??? The whole point of my requesting that each therapist who works with our daughter send monthly updates is so that I know what they are focusing on during sessions and what we should be focusing on at home. Seems so simple and yet the school therapists are making it so unbelievably difficult. I also requested to know dates and times that they work with Little A each week, and not one of them provided that information in their emails.
For those of you with special needs children, how have you handled situations like these? I’m trying to extend grace, to remember that my child is not the only one these therapists work with every week, but I don’t think monthly contacts to let me know how my child is doing is asking too much. After all, they agreed to it. What are your thoughts?
In other news, Little A is having her FIRST EVER school photos taken on April 8th! I am so excited and also a little bit terrified. I don’t want her to hate her photos the way that I hate mine 🙂 I’m excited because, for the first time, I am in the position to send adorable photos of MY CHILD to all of the friends who have been sending me photos of their children all these years. I’m pretty proud of Little A.
Speaking of Little A, she is suddenly (like, this week) hugging every kid near her. She NEVER BEFORE voluntarily shared space with other kiddos. If they came near her, she would remove herself to the other side of the room. But now? Now she hugs 🙂 And I’m okay with it. Other adults aren’t, but they don’t know my kid. They don’t know what a huge deal this is, or how far she has come.
Let’s talk potty-training. We have not been successful in this area, but we are considering trying again soon. Little A will turn 4 years old at the end of this week, so we are wondering if we should start now. If you have a child with Down Syndrome, at what age did you begin potty-training? How long did it take before your child was successfully using the potty regularly? We tried for four months last year before deciding that she wasn’t ready, mostly at the school’s urging. We’ve got a potty, we’ve got potty books, we’ve got M&Ms. What else do we need?
As always, thanks for following along on my Down syndrome journey~