January 24

Sarah has been totally rocking her coat zipper. She does it all by herself almost all the time now. One thing that may have helped is that with my horrendous cough lingering and being horrendous at terrible times (in the waiting room at the pediatrician’s office while waiting to find out that Sarah had pink eye, in the hall outside the pediatrician’s office as we were getting bundled to leave) I wasn’t very helpful when it was time to do Sarah’s zipper. I was too busy coughing embarrassingly, uncontrollably, nearly pukingly. But Sarah can do her zipper! And I am almost better (it was a virus, confirmed by two doctors because I didn’t want to believe it the first time), as is Sarah, as is Carl. Amy just began a cold a few days ago. I don’t know whether I hope it is the same thing I just survived so that I am not at risk again or whether I hope it is different because I wouldn’t wish what I had on anyone. Luckily it seems that I got it the worst out of our family members. 

Yesterday Amy and I went out in the snowstorm to her doctor because I was worried she had pink eye (she doesn’t). During our absence, Sarah and Carl were talking about Sarah’s new cousin, baby A. Carl suggested that Sarah could pretend a Pooh stuffed animal was baby A. Sarah took this very seriously and was very tender and careful with her baby. She spoke to it, she carried it carefully upstairs, she put it gently in bed and then carefully snuggled up next to it for a nap. Sooooo sweet.

Next Sunday is Sarah’s birthday and when a card arrived yesterday I let her open it. She read the first couple of lines independently. It said “Dear Sarah, A star is what you are…” She read all of that before wanting nothing more to do with it. I know she knows most of those words but I didn’t know she knew “star.” 

I am having many conversations with myself about how today is going to go. I want to be super industrious and clean and organize my house mightily. I want to have an orderly desk. I want to have all my daily chores done early. And…I want to sit on my butt and read and not deal with the perpetual mess at all. As with most days, I will probably land somewhere in the middle. It is just interesting how many solo conversations happen as I move through the day. Whether it is about eating choices or cleaning choices, I have certain ideals that I think I should attain or want to attain but then in the moment I want an experience of ease and joy that seems to more easily come from other choices. All of this is intensified after being sick and still recovering. The mess has silted in and become more of a permanent fixture so there is both more and less urgency to deal with it. I have barely exercised in the past two weeks and am yearning to do more and yet I recognize that I still have to go slowly and gently and that sitting and reading is an important part of recovery. There is also the bookending of my sickness with Amy’s sicknesses, meaning that she wants to be snuggled with me more often. I am happy to oblige because it is a lovely feeling to sort of fix something for someone just by being me and being there. This does not, however, lead to exercise or cleaning or organizing my life or doing things on my list for the day. One moment at a time. Maybe I’ll just go read for a few minutes now...

I fervently hope you are all well.

January 17

I have a nasty cough that has been mightily interfering with sleep. I don’t understand why it gets worse at night. I understand it getting worse when I am horizontal, but why also as the hours get later? Sarah is sick too, though it is mild so far. Carl seems to have gotten over his version of whatever we have quite quickly, thank goodness. Amy had an ear infection a week ago but is well. I seem to have it the worst, sometimes coughing uncontrollably. When I’m not coughing though I can feel as if I am totally well, just tired. It is an odd mix. I am getting one heck of an abdominal workout.

Sarah’s nights were better until she got sick, and that included time off from eggs and time with eggs reintroduced. 

Sarah zipped her coat all by herself on Wednesday. I know she has occasionally done this in the past but it isn’t something she can do regularly. I think seeing  the OT helps me remember to ask her to do more fine motor things by herself and to give her the time and encouragement to do practice. It is also exciting to watch the OT do certain activities and to know enough now to understand what she is doing and why (such as tipping Sarah slowly from side to side while having her pick up a beanbag so that her reach crosses her midline; this helps with all sorts of brain coordination and balance).

I did the ATEC online autism evaluation checklist again. The last time I did it was a year ago. I try not to overthink my answers and certainly there is some subjectivity based on how much I deem something to be a problem. Disclaimers given, her score was a 25. A year ago it was 35. This seems to be quite amazing to drop 10 points. Even if I adjust for the places where my answer could easily have been different, that still would be a drop in 7 or 8 points. Wow. That means she is in the most mild end of the autism spectrum. I know that being on the spectrum is not the only thing to define Sarah’s delays and challenges, but still. Still. I’ll take this and run with it.

I hope you are all well.

January 10

We are taking a break from eggs. Sigh. I sincerely hope that the dramatically increased frequency of Sarah’s middle of the night parties was just due to Christmas excitement, travel excitement, and getting back in a normal routine kerfluffle. In case it was food related, I thought one plausible culprit was eggs so we are removing them for at least a little while to see if it makes a difference. Since removing them from her diet we have had two good solid nights of sleep from Sarah. This could also just be finally settling into normal home life. It isn’t enough yet to prove anything in any direction. 

Sarah has had a couple more small servings of ghee and two spoonfuls of lactose-free, homemade cow-milk yogurt. So far so good. 

On Monday Sarah had her first Occupational Therapy (OT) session at the Children’s Institute. I love the therapist assigned to us. The first session was all about building a connection through play that also helped the therapist ascertain Sarah’s strengths and skills. Sarah did wonderfully. She had an 8 or 10 loop conversation with the therapist. A loop is when person one says something and person two responds. (I think this is a loop anyway). Sarah followed the requests of the therapist easily with very little extra prompting. She has also been asking to go back every day since then. 

Amy has been sick for part of this week so there has been lots of cuddling time and the nights haven’t been as smooth as usual on her side of things. So I am a tired mama and it seems impossible that it has only been one week of “normal,” because it wasn’t really normal and Monday feels forever ago. I thought there were more things of note, but I can’t think of them. I feel like I am in slow motion moving through sludge. I want to nap and ignore all the mess and I also want to go into super-duper cleaning mode. I will probably land somewhere in the middle. The most important thing is to keep myself hydrated, rested, and well. I even put that on my to-do list for the day to make sure I don’t ignore my basic requirements. The mess will certainly keep and in a year I won’t remember it anyway.

I hope all of your snuggle-tanks are full.

January 3

On New Year’s Eve we did an early count-down celebration with the girls. At the suggestion of a friend who was visiting, we asked them if they had a favorite moment or thing from the year that they remembered. Amy said it was dressing up as a ballerina for Halloween. Sarah thought for a while and then said the ball pit at Idlewild. Wow. I am impressed with both of them. What is notable about Sarah’s answer is that she came up with her own instead of saying something similar to Amy’s. 

The thing that most stands out for me when I think of 2015 is that it is the year Sarah learned to read. We are no longer doing word cards. For Christmas I got Sarah a writing tablet that is basically an electronic slate. There is a stylus pen for writing and then when you want to clear it you press a button on the screen. That is it. I thought she might like to practice writing on it. I didn’t predict how wonderful it would be for practicing reading. I can bring it to wherever she is and write messages to her and she can read them, usually without much help. Having it be electronic means I don’t have tons of paper to recycle or store. Having it be so much simpler than an ipad means that Sarah isn’t tempted to do anything else with it because there is nothing else to do. 

Our Christmas travels were wonderful and sometimes challenging. The girls are amazing travelers now and the only difficult part of driving long distances is getting them back in the car after a rest stop. The most challenging parts overall were probably the nights. We celebrated our Christmas at home a day early and then at my mom’s on the actual day. This meant two nights where the girls were eager for the next morning. Sarah spent most of the day on the 23rd saying she wanted to wake up early. In the middle of that night she woke up and wanted to open presents, but it was truly the middle of the night. She finally went to sleep again. I woke up at 5 for no apparent reason and couldn’t get back to sleep. Amy woke up at maybe 6 and she and I opened our stockings together. Carl and Sarah slept in till 7:30. So much for Sarah waking up early. Since the girls can read all of our names they made fast work of the pile of presents. Then we drove to Philadelphia. At bedtime on the 24th I made the mistake of mentioning that the next day was Christmas. Half an hour after the girls were in bed they emerged ready to start the festivities. We finally got them back asleep. At 4:52am on Christmas morning Sarah decided it was time to get up. I said no. In hindsight I should have just gotten up with her easily so that only two of us would have been awake. Instead, my resistance led to Sarah screaming and then Sarah, Amy, Carl, and I were all up. We had a small breakfast. Carl and Sarah went back to bed. Amy and I stayed up. We learned our lesson by the time we did Christmas at my dad’s house so presents were opened in the afternoon. 

Normally Sarah only has middle of the night parties (that last 1-2 hours) once or twice a month. Starting with our first Christmas eve and continuing through last night, the parties have been roughly ever other night. I am hoping this is just due to travel and excitement. My concern is that it is food related but we have added several new foods (some small) and since I didn’t notice any problem with her skin or belly I thought we were fine. Maybe we are. 

This whole food business is so interesting. Every time I add something new I feel emotional in multiple ways. I have low level panic and embarrassment over adding something processed in any way or not homemade in every way. I also feel relief at expanding Sarah’s options so that she can travel more easily and eat at other people’s houses or restaurants more easily. While the pinnacle of healthy eating might be for me to make absolutely everything from scratch, I’m not sure that is the pinnacle of emotional or spiritual healthy living, at least for me. I have to repeatedly counsel myself that it is ok that she is having whatever new thing she is having, assuring myself, “it is food! it is ok! it is even healthy food by most standards! The worry is because such food was off limits for so long but it is really really really ok. It is food.” I have to say this even when the food in question is a banana. Or an egg. Or homemade whole wheat bread. Or organic fruit leather. The new things Sarah has had since I last wrote: fruit leather, chocolate ice cream made with coconut milk but not made by me, puffed rice cereal, Grey Poupon mustard, Heinz ketchup (regular with corn syrup (ack!!) and organic with organic cane sugar), fries at rest stops (made with either canola oil or corn oil) and  ****ghee*****!!!!!! The ghee was yesterday. That is our first tiny step towards dairy. So far so good, unless the night party was related. But night parties happened even when her food was unchanged for months on end it is hard to know.

Sarah’s fingers have been in pretty good shape. I took her soap with us on vacation and even brought it into the rest stops with us. 

I just read Glennon Doyle Melton’s Carry On, Warrior. I believe that a friend recommended this to me years ago and then it sat on my shelf for a while. I am so glad I read it. It is beautiful and raw and honest and inspiring. I highly recommend it for anyone struggling with anything and seeking to be kinder to themselves while being fully fallible and human.

Sarah is such a delightful social person. She certainly still has times of being exclusive but they are rare. If grownups are around then she wants to be talking with them, climbing on them, connecting with them. This isn’t new, but I have been appreciating it and marveling at it. 

Amy has started to be able to open doors by herself. This is awesome. Her coloring is also getting much more careful and specific when she wants it to be. 

As we navigate re-entry into regular home life I am trying to be gentle with my impulses to either ignore the mess or to get a dumpster and throw out half our our belongings. New toys and books are so wonderful! I just need to weed out some of the old stuff (at least storing it in the basement) to make room. In past years I have done this preemptively and that would have been helpful had I done so this year. 

I am deeply aware of how blessed I am in my amazing life filled with deeply amazing and wonderful people. Thank you all for being in my life. 

I hope all of you are having whatever kind of weekend you need.

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.