There has been a lot of stress and anxiousness preparing for Maggie’s first day of school. Ours not hers. We kept telling Maggie that she was going to be going to school and it was going to be fun. She didn’t really care, but how could she? She had never been and didn’t really understand, as far as we could tell. As far as she is concerned she has been going to school already. She has been in therapy for the past year and a half and probably thought she was just going to more therapy, which is mostly fun.
i know that the first day of school is emotional for most parents, but having a kid with special needs amplifies it. On top of the typical Pre School list of extra clothes, pull ups, panties, wipes, lunch and snacks, we had to make an extra bag for therapy equipment/devices that we use on a daily basis. This includes an arm brace, hand brace, eye glasses, weighted vest, weighted bracelets, AFO orthotics, and her PECS book. All items we have become accustomed to and the school staff needs to learn to use to help Maggie. We had to meet with all of her teachers beforehand and explain Rett Syndrome to them. Fortunately, these teachers have had some, albeit meager experience with Rett, but Maggie’s Rett is different, so we had to explain her to them. We spent an hour and a half in a room of 12 different therapists walking them through every little intricacy we could think of. We’re concerned because her teachers don’t know, and won’t really have the time, to force her to use her hands or bear weight on her arms, and that could result in a drastic loss of hand function – after all, “Use it or lose it” is the doctor’s mantra about Rett. So, we have to hammer that home to teachers who have to deal with 8 special needs kids who all have their own special special needs. It’s a lot.
We also needed an earthquake emergency bag. When I read this on the back to school list. I lost it. I couldn’t breathe. Living in California, I knew we needed to have one for her at school, but in the chaos of everything else, I simply forgot. So the day before school, I packed her earthquake bag. I cried and cried and couldn’t figure out why I was so upset, then I realized. If there is actually a disaster, Maggie is nonverbal. She can’t ask for help. If something happens to the school staff and she wanders about, she will wander away. Of course, I tell AJ and instead of his usual, “it’ll be fine, Jenny.” He got upset as well. He didn’t cry, but he was upset. AJ thinks we should microchip her, although I don’t think anybody does it besides veterinarians, I’m kinda with him on the idea.
So, now, I’ve ordered tags for her shoes, that will be on her at all times. They have our numbers on them and say “Not speaking Yet”. Rett Syndrome. WTF! Of course, the scenario where there is an earthquake and Maggie is all alone seems, to say the least, slim. But at least she has her tags.
In all honesty, if there is an earthquake, the building goes on lock down to protect the children. If they think I’m not going to repel off the roof and come in through the window, they are kidding themselves.
Other than my stress, anxiety, exhaustion from packing her bags, stressing about earthquake safety, I’d say Maggie’s first day of school was a success. I didn’t leave the school grounds, and she was happy and amazing. When she came home, she couldn’t stop giggling. She’s having the best time. I can’t say how much of a relief that is. We were certain we’d have to take her out of school, that it was unlikely to work out, that she was going to change, be exhausted and miserable. So, far, though, quite the opposite. The teachers have been impressed with how well she was transitioning. I don’t think they are as impressed with my transition, since I’m the only parent sitting on a couch in their lobby.