December 19

The day after I sent my last update I did receive an email from my crush school explaining a little bit more. Apparently their actions were in response to how much they thought I was clear that I didn’t want Sarah to have a helper. While it is true I hoped and thought she might not need one, I still think it would have been nice for their first move to have been asking me if I was sure about that. I do feel at peace about the situation at the moment though.

You may remember that there was one more private school for me to visit in case it would be a good fit for Sarah for next year. It was a lovely place and I’m sure it is perfect for some people. It would not be perfect for Sarah. It would be too easy for her to leave given her love of stairs and doors and that they can’t constantly monitor the entrance/exit or her. 

I have emailed one of my public school contacts about what our next steps should be to reenter the district (since we are in the homeschooling division at the moment) and what we need to do to get her reevaluated. I haven’t heard back but I won’t email again until January. Carl made some good points about how just because we are moving to enroll her in the same type of class that she would have been in before we did Sarah-Rise, it doesn’t mean that Sarah is the same as if we hadn’t done our program. Written out or stated this is obvious but in my head/heart it wasn’t quite clear. 

Sarah has had long hair for a while and she has protested about getting her hair washed, brushed, and ponytailed. Whenever I would ask if she wanted it cut short or to keep it long she would say she wanted it to be long. Apparently she always told Sonia she wanted it cut. This week she told us both she wanted it cut so we took her to a hair salon. She had enough to donate so we did that. Then we went to a coffee shop and got juice and organic fruit pouches that Sarah could have! 

One night I was fixing dinner and I told Sarah she could tell Amy that dinner was ready. Sarah promptly ran upstairs calling, “Amy… dinner is ready.” This is new. This is awesome. 

Carl has specialized in giving the girls cat rides when it is time to go to bed. He pretends to be a cat while they ride piggie-back (cat-back). When that option wasn’t available I offered mom-cat-snuggle rides. I carry them in my arms, meowing and purring and nudging my head against theirs. A couple of times during these rides Sarah has said, “I love you so much.” I don’t know if this is what she wants to tell me or if she is saying what she expects me to say to her, because I often do. Either way, I’ll take it! Amy often also says “Mom, I love you” and that I know is intended for me. Melt, melt. Purr, purr.

In my contemplations of life, death, time, and memory, I have realized that there are things about life at the moment that I won’t remember in the future. I no longer remember the details of particular high school homework that might have seemed all-important and stressful at the time. I no longer remember specific moments of hurrying out the door to pre-school a few years ago. Sure, I know I did stress about it and rush people, but the actual details are gone. This means that I can actually perhaps relax more in the moment now. Because I won’t remember the details later. I will probably remember an overall sense of stress or ease and I would like to cultivate a memory of ease. In many small moments this week this has helped me be more relaxed, whether it is about leaving on time, being with the girls in a moment of their distress or play, or spending extra cuddle time rather than doing some items on my to-do list. In a month or a year I won’t remember whether I cooked the fish on the day I meant to, but I hope to remember a general feeling of easy connectedness with my loved ones.

I won’t write an update next week due to the holiday extravaganzas about to ensue. May you all have a wonderful couple of weeks.

December 13

In the past week, basically on parallel hospice timelines, I have had two people I care about die. One was unexpected and someone my age. Another was a family member who lived a wonderful, long life. I’ve been thinking a lot about life and death and how we move through life and emotions. I didn’t have many moments of deep sadness but I had moments of just feeling like I didn’t have energy to do a lot and just wanted to sit. I decided that was ok and just to go with it. I have been gentle with myself and also had times of feeling like I should use every minute to the utmost and always be loving and patient because you never know when a moment is your last. True. And yet, that was a lot of pressure to feel like I should be perfect all the time. Then I returned to being ok with it all, or trying to be ok with it all. 

I had a wonderful and helpful talk with M. She helped me see how I was holding myself and our SR program to such high standards that I was being immobilized due to the pressure I was putting on myself. I also realized that it is ok that I don’t really do time in the SR room anymore because one goal of the room was to help Sarah not need the room. So if our time now looks more like playing a game with Amy a few times a week and knowing what a big deal that is, then that is amazing and it still certainly counts.

After much thinking I decided to write an email back to the school that had broken up with us over email. I said I didn’t want Sarah in a place where we had to fight to get her in so I’m not pushing back against their decision but I did have some questions. I asked my questions. I just want to understand more of what happened. They would have gotten the email Wednesday morning. I have not heard anything back. That rankles almost more and I have been crafting imaginary next steps, but perhaps my energy would be best spent by letting it go fully. I have considered writing back again saying, “here is the email you could send me…I’m very sorry if it felt abrupt and I don’t have answers for your questions. I still wish you well.” Even if they don’t have answers that they want to share it would be nice to get a response rather than being ignored. I just don’t understand ignoring me. It may be uncomfortable for them but it doesn’t take much effort to write back and it is a pretty loud response to ignore my email.

Thanks to one of you lovely readers I found out about another private school in the area that I am going to investigate. It is very non-standard so I think it will either be perfect or not at all a good fit. I will visit on Tuesday.

One of the best parts of the week was when Sarah’s card arrived in the mail. For kindergarten, each student got to write a card to someone of their choosing and it got mailed from school. Sarah chose Amy. I believe she wrote it all herself with maybe the tiniest bit of help. I think it says “My dear Sii [sister] Amy Merry Christmas Love, Sarah.” Oh my goodness!!!!!!!!!!!!!!!!!!! Love, love, love, love, love!

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.