The girls are finishing their third week of first grade today, and I am happy to report that at this point I am feeling optimistic about what the rest of the year will bring. They are in the same class at a new school, with a new teacher and principal. Eden was able to keep the same aide (this is their fourth year together) and that has definitely helped to make the transition go much more smoothly because Ms. Jess already knows Eden really well and doesn't need any training on equipment/transfers, etc.I am so pleased with the overall positive vibe that I get from the school. So far, they have been very open to working with us, as well as kind, and most importantly ***solution-focused***. They seem to embrace the whole concept of inclusion (rather than just tolerating it). I don't think I will have to put up a fight this year over things like "I don't want a stranger taking my kid to the bathroom," "I don't want my kids to leave school 15 minutes before the end of the day," "I don't want my daughter to ride the bus to the field trip by herself," or "I don't want Eden always sitting in the back or on the sidelines." So far, the staff seems thoughtful and proactive in working to include Eden in all of their activities. And, even better, their teacher seems very interested in getting to know...and teaching...ALL of her students.
That said, we are still making adjustments to the plan and working to get all of the right equipment and support in place. It looks like we finally have a desk that works with E's wheelchair. The desks with the storage cubby under them do not seem to work because they are too high and difficult for her to get things in and out of. We are trying to figure out a good system for storing her books and supplies where she can get to them independently. We are also looking for a new floor sitting solution. She has used a straddle-sitter the past 3 years and it worked well, but this year E is finding it really uncomfortable on her legs, as well as "embarrassing", and difficult to get in and out of. She has been sitting independently on the floor some of the time, but still prefers to w-sit which isn't good for her hips. We are hoping to get ahold of another Child Rite chair as this works well at home.
I talked to the team about Eden's progress with the walker this summer, and our hope that she will use it at school this year. We came up with some good ideas/times that she will practice walking. I took her walker in to gym yesterday, and she spent the first 5-10 minutes walking laps across the gym. She did SO WELL, and it was clear that she was showing off! Transporting the walker back and forth everyday will be a challenge, so if we could find one cheap or used it would be helpful. She is using a size 2 Kaye Products walker. If anyone happens to have one lying around that they are not using please let me know!!
One of my major goals for the year is to get assistive technology in place to help Eden with writing. She is able to write, can form all of her letters and draw simple pictures, but it certainly not easy for her. Her letters are large and can be difficult to read. Ideally we are hoping to get an iPad for the classroom for assignments that require writing. This is going to be a challenge - at least definitely a learning curve, for all involved, (namely ME) but Eden is very adept with technology and I foresee that she will eventually do all of her written work on an iPad or computer so I am willing to learn. I hope to get the ball rolling on this very soon (which means figuring out the red tape and what hoops I need to jump through asap).
The schedule has been a major adjustment. The girls went to pm preschool for 2 years, and last year were in pm kindergarten, so have gone to school from about 12-4 for the past 3 years. They didn't have to get up super early, and we were able to spend adequate time feeding them. Now...they have to get up at 7am to have time to get up, dressed, potty, teeth, hair, breakfast, shoes, potty again, and out the door by 8:15. The morning's are a hustle, but we're managing. Another, more pressing challenge, is the fact that they are in school all day now, and "eat" lunch at school... They have to stay in the lunch room for at least 10 minutes before they can be dismissed for recess... Anyone who knows anything about my kids and how they "eat" can only imagine how well this is going... Let's just suffice it to say that we still need to work on it.
Eden was scheduled to have her tonsils and adenoids removed (today actually), but we had to reschedule because she has been congested with a bit of a sore throat and minor cough this week (the usual back-to-school virus). Her sickness is pretty mild, but we really need her to be in top form going into the surgery. We've rescheduled for November 7th. I am super nervous and stressed about it. In a way, it would have been nice to get it over with so I wouldn't have to keep imagining terrible scenarios over and over in my head. Eden has very large tonsils (they almost touch each other). We contemplated having them taken out when she was 3, but at that point we weren't really sure whether they were contributing to her feeding difficulties and didn't want to put her through an unnecessary surgery without knowing it would help. Last winter the girls had strep a few times and it was especially difficult for Eden to recover. I am also convinced now that at least part of her difficulties with swallowing and snoring (especially when she is sick), restless sleep, and morning grogginess, are due to her large tonsils. So I do think it's best to get them out before we are full on into another cold/flu season, but I am still incredibly nervous and worried about how she will recover... I have heard some negative, terrible stories that I am having a hard time shaking... Will welcome any positive outcome tonsillectomy stories to help me get through the next month!
