December 7

I’m getting over a stomach bug and I think I have also been putting off writing this update because it feels large and weighty. But here we go…

Sarah had an OT evaluation at the Children’s Institute and she definitely qualifies for OT help. We just have to wait for the forms to be filed and for scheduling to call us. I was very impressed watching Sarah do some of the tasks they had her do, such as cutting out a square that they drew on paper and catching balls of different sizes. Her skills were much stronger than the last time I had seen her do them, which was possibly months ago.

I had a dream school and a dream vision of Sarah’s future schooling at this dream school. It is a small private school. I had really really really hoped that Sarah could go there next year, maybe repeating kindergarten, and then continue forward, all without an assistant. I met with some people from the school and they seemed open and willing to consider the possibility. We scheduled a three-day visit, building the number of hours she would be there, because I knew her first day might not be her finest. Last Thursday she had her first day. It was her last day too. I got an email a few hours after her visit and the school said they don’t feel that they are the right place to meet her needs. They are good people and they are a good school and I am still a tiny bit heartbroken and disappointed. I feel like my crush broke up with me over email. I am trying to not feel too bitter but also wanting to allow myself the feelings that I have.

I have a multitude of reactions…
1. Drat!

2. NOW WHAT?!?!?!?!?!

3. I work so hard to have our life feel normal, to see Sarah as normal. Of course I know she is older than her classmates at school and at gymnastics, but she is able to be there with either no help or minimal help and so I feel normal. It all feels good. I explain all the time that she has special needs and that I run a program to help her and yet…I hate having it shown to me by any other mirrors that she is not the same, that she is not catching up, that she may never catch up.

4. I am not sure I have the energy to keep doing any more SR in a big way. I don’t feel like I want to be in the room. I don’t want to plan a program. I don’t want to homeschool. I don’t want to figure out ways to make the team stronger or more effective. I just want to be done. I’m worried this means giving up. I worry this means I am a failure of a Son-Rise parent. Am I deciding this because it is ok and makes sense? If I put her in public school in an all-special needs class then am I giving in to the idea that she will always have special needs? Am I endorsing it or accepting it in a healthy way? I feel disappointed in myself for giving up, but I feel like I am lying down by the side of a marathon course and I am just all out of juice, which also has me thinking I must be a SR failure. I know this isn’t a fair perspective and I know I shouldn’t compare myself to other SR parents but I do and feel less than up to snuff.

5. I am so thankful that someone at some point said there must be a place for education for everyone. I am so glad the public schools provide such a place and that Sarah will be welcomed, despite our back and forth dance the past few years where we haven’t used their services.

6. I think Sarah is actually ready to take in her schooling in the public school Life Skills class in a way she wasn’t ready for in the past. Maybe everything has gone perfectly and is going perfectly. She has to be evaluated now to see what she qualifies for. Should I hope that somehow she doesn’t qualify for the Life Skills class because of being so skilled? No! Because I want her to have the small class size and extra teachers. Will they let her be in first grade as I request? Or will they put her in 3rd or 4th grade because of her age? (in which case I suppose I can brag that she skipped some grades)

7. There are some skills for which I was the best teacher/SR leader for our team of teachers for Sarah (speaking, eye contact, playing games, imagining, reading, potty training, interaction). There are some skills for which I think I am not the best teacher or team leader and that Sarah has an easier time in a structured environment with other teachers (the rest of school academics and skills).

8. I am really hoping that when we reenter the word of IEPs that I can maintain the confidence and vision I have felt as an SR team leader and still influence the decisions made regarding Sarah and our goals for her. I hope we can keep going with our SR skills to supplement her schooling and help her powerfully with any and all goals that we set.

9. I’m still feeling disappointed with the situation and myself. (could it possibly be ok not to be disappointed? just to see our situation as our situation and not compare to anyone else and just celebrate our successes and where we are? maybe. I’ll consider it.)

10. I’m feeling like everyone else is moving on and we are back here waving goodbye.

11. I am forever grateful for the SR years and especially this year of kindergarten that feels like a microcosm of perfection and welcome and home.

12. I love how even when I am feeling like a failure for not continuing until Sarah doesn’t need any help and can enter mainstream school, Sarah bombards me with examples of how awesome she is and how much she continues to progress…. Twice in the last week she requested to play a game with me in the family room and we proceeded to play an entire game with Amy as a third player. We played Quack Quack and Pengaloo. She asks questions all the time “Where is …?” and “what is this?” The idea of her asking questions used to seem laughably far off. She has even more crazy strong moves around the gymnastics bar. Carl and I look at each other and say, “remember when she couldn’t lift her head?” I know there is a time when all of us couldn’t, but for Sarah it lasted a very long time and seemed scarily questionable in the early days. Regardless of how I frame everything, no one can take away Sarah’s current skills or tenacity for learning and for life. Thank goodness she has herself to keep things going even when my energy flags.

In other news, we have added bananas and that seems to be ok! I just tried prunes for her yesterday so after a couple more days I should know if those are ok.

I wish you all wellness and space to be with any and all feelings no matter how much they seem to storm and rattle in different directions.