May 31

Every time I watch Sarah doing gymnastics I feel amazed and grateful and a tiny bit teary. Gymnastics provides a clear reminder of how far Sarah has come in her physical  abilities. Tuesday was her last gymnastics class until I sign them up for another. We are going to take a break for the summer while I, in theory, teach the girls to swim. I have also signed them up for a ballet class. I observed the class and the teacher seemed lovely and playful. They start at the end of June.

On Friday, Sarah had her last day of preschool ever. She has been in preschool for 5 years. For 2 1/2 years she was in a class just for kids with special needs. Then for a little while she wasn’t in school at all, outside of the SR room. Then she started one morning a week at a preschool that was comprised of neurotypical 3-5 year olds. It was at this school that she spent the last 2 1/2 years in terms of school outside of the home. She gradually moved to going two mornings a week and then three mornings a week, with Sonia or me in attendance. This last year Sonia was in the hall 85% of the time. For kindergarten, Sarah will be with one of the teachers she has had for the past 2 1/2 years. It will be half day and it will be a very small class. As of now, the teacher thinks she doesn’t need an extra helper. The night before Sarah’s last day of preschool I felt overwhelmed with emotion. I feel like I just made it to the finish line of a long race. I certainly still have my visions and hopes for the future, but this is a huge moment. I so much didn’t follow a traditional path but I did get us to this moment that I envisioned long ago, of Sarah being in a class with her developmental-age peers and only moving to a new level of class when she is truly ready. 

I also discovered that we have already surpassed the requirement for homeschooling hours. This doesn’t actually change our daily routines or goals, but I do feel a bit of pressure lifted. For next year I will officially home school Sarah in addition to the kindergarten because the kindergarten is half day and I think she needs to be in full day schooling based on her age. Also, even if I didn’t need to officially homeschool, I would still keep doing what we have been doing.

Some of the word cards now have three words on them. One of the words is a small connector word, but still! This doesn’t seem to phase her a bit.

I have had a few small/huge personal breakthroughs. I realized that often with the word and math packs I was pushing my agenda without always connecting with Sarah first. Now I have started joining her if she is isming and waiting for us to connect and then working the words into the play scenario. This is so much more fun and effective and I don’t think it actually takes much more time than asking her for her attention and then getting grumpy as I try to force it. After a helpful conversation with M., I clarified that I also want to connect in this way when I am going to make other requests of Sarah, such as getting dressed. At first I was getting hugely ambitious and wanting to always parent perfectly no matter what. The thing with that goal is that it is actually coming from seeing my current mode as lacking and it is setting the bar impossibly and unspecifically high. Instead, I am setting the specific goal of connecting first when it is time to request or do words or math. That is all. That is do-able. The times that I don’t do it are more notable and I don’t enjoy them as much. I have had huge achievements of putting a pack of words back undone when the moment wasn’t right. This has helped me in a few unrelated scenarios of not getting what I want to just let it go easily.

Friday morning I helped Sarah get herself dressed! With no upset from either of us. With fun and play!! Oh my goodness!!! Talking with M. had helped me think slightly differently about how to help Sarah with getting dressed because we realized that Sarah now allows hair washing pretty easily and giggles when I get water on her face. She likes it when things go wrong. We have known this about her sense of humor, but I hadn’t applied it to getting dressed and how I could play up things going wrong or playfully demanding “Are you gonna take off your shirt or am I?” 

I have also had more and more moments of truly, fully, 100% being comfortable when the girls are upset. In the past I would pretend to be comfortable but I was actually uncomfortable, wanting it to stop, and tightly explaining their choices as if they were wrong for not choosing happiness in the moment. Now, when they get upset I am reminding myself that it is truly ok. For real. I tell myself it is music to my ears and there is no need to shorten the duration in any way. I think this may actually shorten the duration. Even if it doesn’t, I am feeling way more comfortable and comforting. This also helps me enforce boundaries or rules more easily because I remind myself it is truly ok if they don’t like what I say and get upset. The times that I am not so truly ok with it all, I am usually hungry. My step-mother used to remind my dad that there was no quitting his PhD program after 10pm at night. I love this. I translate it to “there is no quitting on an empty stomach.” I can’t give up or feel like a failure if I am hungry, since those so often go hand in hand. First, eat (or pee or nap or turn on the AC). Then I can reevaluate the situation.

This morning we had a tiny/huge momentary miracle. Amy was driving the cozy coupe and Sarah didn’t immediately get upset and try to force her way in. Sarah kept eating her breakfast. After a minute or two then she got upset. I went over to her, with my true comfort about her upset, looked in her eyes and said I knew it could feel hard to wait. I asked Amy to move to another room so Sarah wouldn’t feel so jealous. Sarah loved the word “jealous” and started talking about feeling jealous, though clearly talking about the concept helped her shift into sparkly eyed contentment. 

May 24

Sarah has a loose tooth. For real. Loose! I know the dentist had told me this several months ago but I couldn’t tell. Now, I can wiggle it myself. Wow!

One morning Carl showed Sarah a new word card with “black cat” and then showed the already familiar “red rose,” Sarah spontaneously said, “The black cat is holding a red rose.” !!!!!!!!!!!!!!!!!!!!! No, really!!!!!!!!!!!!!!!!!!!!!!! I mean !!!!!!!!!!!!!!!!!!!!!!!

I have been letting Sarah look at the picture of Pluto on my phone that shows when we listen to dog music. I let her look for about a minute or two and then take it away. I explain that if she can stay calm about it, then she can look again later in the day. So far this seems to be working beautifully. I’m not sure how Son-Risey this is or if it will extend to other situations, but it is what we are doing for the moment.

As of now, Sarah’s kindergarten teacher thinks she doesn’t need a helper for Sarah next year. WOW!! If the class size grows then this may change, but for now it is awesome.

Thursday morning a small miracle occurred. Sarah got dressed all on her own without my even saying anything. It turned out that she did this because she saw Carl leave the house to go to work and she thought if she got ready fast enough she could go outside with him. 

Friday and Saturday mornings you probably heard Sarah and me yelling at each other about her getting dressed, or lack thereof. I feel so frustrated when in theory she has something she wants to do that requires being dressed but she doesn’t get dressed. I keep resolving to stay calm and then I keep not staying calm. I keep thinking it is somehow a good idea to try getting her to get dressed. I think for now it is best if I abstain from any attempt because what has happened the past two days is I just get us into a yelling match and we are both upset and she isn’t dressed and then Carl or Sonia ends up successfully encouraging her to get dressed. So, I might as well just say that Carl and Sonia will always get her dressed and I will not even try. That perhaps will give us a break from our yelling matches, at least where dressing is concerned. I am also paying more attention to times when I get close to yelling but refrain and then celebrating those moments for myself. I am reminding myself that change is possible and that we can figure this out. I am reminding myself that just as I still love Sarah then I am still lovable. I have even had moments of realizing that I think my kids really do know they are loved, despite my times of yelling so loudly, and that is something. Maybe that is everything. 

Yesterday I broke out my journal, which had not seen a pen since 2010. I thought maybe it would help to write it all out and ask myself why I get so frustrated and why, when I am so frustrated, I yell. Mainly I think it has to do with somehow believing that the key to our future happiness/success/hope/Sarah-being-“normal” is riding on her getting dressed on a given morning. Because I want so desperately to feel like I have any power or control and when she doesn’t get dressed then I panic about the lack of control overall and I think that if I yell loud enough and long enough then I will have control and scare her into submission. That is not a pretty thought, but it is good to air it out. Somehow I have it twisted that if she gets dressed then all of my hopes are possible and if she doesn’t then I am a failure forever. This would be very clearly not true if it were happening for someone else. In the moment, though, it feels very true. So, my first step is to keep reminding myself that our future success actually does not hang in the balance. Also, if it does, it hinges more on my staying calm than on her getting dressed. No problem! No pressure! Ack! Anyway, that leads me back to my resolve that for the time being I just won’t be involved in that interaction. Thank goodness I have that option.

When M. came to play with Sarah yesterday, Sarah was again talking about Baby Bear. She loves this play scenario, often involving crying and being cared for. M. brilliantly turned this into creating a huge drawing of a zoo. 

When Sc. played with Sarah earlier in the week, Sc. had had a hard day. During a time of joining, Sc. felt sad and got a bit teary. Sarah immediately came over to comfort her, including calling on a pretend phone to say “Hello, Sc. is sad” and she pretended to drop off a bag of stuff to help her feel better, as we sometimes have done for friends who live nearby when they are dealing with hardship. I love this sweetness. I love that Sarah absorbed the idea of taking someone a bag of stuff as a way of demonstrating love and support. What a sweet little bean.

Love and support to all of you.

May 17

What went right? 

I’ve been thinking about this question and about how often in my life I notice the little things that don’t go according to my plan or hopes, noticing in essence what went wrong. But I’ve been shifting to noticing a bit more consciously what goes right.

We had lovely visits from my uncle J. and from Grandma.

On Monday at 5pm, Amy started saying her ear hurt. Given that she tells us almost every day, sometimes multiple times a day that something hurts when she so much as bumps an elbow, I didn’t take her seriously at first. After 45 minutes of her crying and following me around like a limp rag, I decided something was wrong enough to warrant a trip to a doctor. Our pediatrician's office was closed by that point, so we went to the Express Care at the Children’s Hospital. Despite Carl being out of town and my thinking that Sonia and my mother-in-law were an hour away, and Amy’s usual car seat being dismantled for washing the puke from our previous trip out of it, my sitter C. was available at basically immediate notice and came over to be with Sarah. Everything went smoothly and we got antibiotics for Amy’s ear infection and she has been totally herself since then. The doctor couldn’t believe that this was Amy’s first time of needing prescription meds ever. Of humorous note, when I tried to give Amy her first dose of medication, she resisted and had to be bribed with chocolate. Meanwhile, Sarah was asking for the medicine. Last night, Amy kept sticking her finger in Sarah’s mouth, pretending to give her medicine. 

I taught the Alexander Technique at the massage school again and at first felt very disheartened because the first student with whom I worked basically didn’t want me to be helping her and didn’t see the point in focusing on herself. Inwardly, I wanted to scream and run away. Outwardly, I stuck with it and I know I helped at least a couple of students. What went right? That whole thing was right! I kept thinking about it all and reaffirmed my belief that taking care of myself is the best way to help my clients and Sarah. If I am in contact with someone then who I am is influencing the interaction and what I have to offer. It can’t not influence it. At yesterday’s AT teacher class, my mentor was her usual work of art as she worked with me and coached me. Every move she makes has the utmost thought, care, and awareness of what each part of her is doing and communicating to my body. It makes a difference. Holding it all gently and with peripheral awareness of everything that is going on in me and around me is the way to go. Taking care with my thoughts and my body positioning makes a difference. I want to be that work of art when I work with my clients and with Sarah and our volunteers. (And sometimes it is ok to just not be that work of art because as of now I can’t keep it going all day long and that is ok and part of it all too).

What went right this morning? We had an amazing team meeting. Have I mentioned how much I love these people?! Honestly, I am so blessed to have all of these amazing people in my life and helping me think well about Sarah. 

Sarah is more often asking me politely to stop singing, rather than just demanding it. 

Sometimes, when she is upset to about 70% I am able to ham it up as if I am totally, playfully distraught too. When she is at 70% or less upset level, then this works and she connects with smiles and delight. When she is past 70% then it doesn’t work and I back off. 

I have done a couple sessions with her outside of the SR room but with the full intentionality and presence I bring to the room. I love this solution to getting more official SR time with her when she maybe isn’t in the mood to be in the room. It is really a room in my head, the space of focus, love, intentionality, and flexible play, just as much as it is an actual room. 

Sarah and I played several turns of Dominoes in the room. 

Out of the room we played an ever-evolving game of Zingo (a kind of Bingo). Usually the chip holder is all-consuming for her attention. As it happened, the chip holder wasn’t with us but the chips and boards were. I asked Sarah if she wanted to go to the Sarah-Rise room. She sat in her small chair at the small table in our dining room and began playing with the Zingo chips in a cup. I wedged my butt into the other small chair and picked up a few chips. I started putting them down while saying the word on them. She did this too. Then I started putting each chip on my forehead, where it stuck thanks to the humidity. She would look at me with delight and say the word. Then we put all the chips in the cup and took turns picking up a chip and seeing if it matched a square on our boards. I love having the freedom, flexibility, and support in my life to take this moment and run with it.  

What has gone exceptionally, amazingly right? I have a superb support system for myself and my family. I have a daughter with a temper to rival mine and that helps me continue to notice and iron out my emotional wrinkles. I have a daughter with special needs who continues to learn and grow. I continue to learn and grow. I have many wonderful friends, including those who have been by my emotional side since I was 4. I have 6 supportive parents, counting my in-laws. I have a sister-in-law who is the most amazing helper I can imagine. I have an incredible husband who is an incredible dad to our girls. I have financial support for this whole endeavor. I get to go to Zumba while my girls get to be with their uncle whom they adore or with one of my wonderful sitters. The girls love all of their sitters. I have jobs that I love. I get to read fun books. I get to make and eat good food. Chocolate exists. I feel safe and loved. So many things have gone right that if I were to list them all it would be a novel. Thank you all for being a part of my blessed, right life.

May 11

I’ve been considering the suggestion that we be the change we want to see in the world. I am understanding it in a slightly new way, realizing that if I want Sarah to be more peaceful then I need to be more peaceful. Perhaps this is obvious but it also seems rather profound, and I am certainly not always achieving it. However, having this intention does help because it clarifies my purpose in peacefulness a bit more. In a very selfish way, I want to be peaceful so that Sarah will hurry up and be more peaceful. It also feels better when I maintain my peace and calm.

We just returned from my 20 year high school reunion. I had a truly wonderful time. Carl watched the girls for almost all of the time on campus and my parents babysat when Carl and I went to the evening gatherings. The girls, had a good time and a hard time. The school had bubbles for all the children. There is also a small playground which was quite wonderful. There are doorways and ramps that Sarah wanted to occupy, which was actually ok until it was time to leave them. She wanted to go back to Mom-Mom and Pop-Pop’s many times throughout the day. Her seasonal allergies started bothering her as soon as she woke up that morning so she was on allergy meds, which helped some but not fully. At one point when Sarah was screaming and I wanted her to go to the playground so I could go to the Meeting for Worship (it’s a Quaker school), I rather roughly picked her up. Once the girls were at the playground I went to Meeting to be peaceful, thoughtful, and grounded. I love Meeting. I especially love it at my school. It is the first time in a long time that I remembered I could offer a prayer of asking for help. So I did. In my head. I asked for help in being more loving towards Sarah. As I sat and thought I realized that a lot of my roughness and tension come from worrying that my plans are going to be derailed. Then I realized that maybe I could frame my plans differently and know that my biggest most important plan is to lovingly connect with Sarah. Other plans are actually less important. When we got home last night, I totally forgot this in my desire to get us inside after our long drive. That was not our most lovingly connected time. Anyway, even if I don’t always remember my revelations, I am always grateful to have them and I feel especially grateful for this particular Meeting as it reminded me of so many Meetings in my younger years. 

High school was not my easiest time. I know that is true for many people. At this reunion I felt the most comfortable being me and the most truly me that I have with this group of people ever. I began to rewrite history in small nudges, realizing that if I felt uncool (no comments from people who knew me then!) and sometimes like an outsider, that that was perhaps largely in my head or through my actions. I know we were all struggling in our ways and figuring out who we were and are. I also know that all of my classmates are kind, lovely, wonderful people that I am honored to know. My teachers too. I love my whole school, and I am so glad I was a student there. I’m so glad I went to the reunion, even if it was two long drives in 3 days. I didn’t attend the 15 year reunion because Sarah was 3 at the time, wasn’t walking or talking, her eating was crazy stressful, and most of all I felt uncomfortable about having a child with special needs. How wonderful now to feel proud of her, to feel good about all that we do and have done to help her, and to feel safe with my classmates to share my situation (not that it is necessarily news thanks to Facebook and my updates/blog). 

Speaking of our little sneak… before the trip I went to tidy the floor of the SR room. I had left it clean. I also thought I had put the Candyland game on the shelf in the closet. Indeed. When I opened the closet to put the game back on the shelf I found the chair that is normally in the room in the closet, so she clearly had moved it there and then helped herself to what was on the shelf. Awesome! Oh no!

At my mom’s house at one point I wondered where Sarah was. Carl said she must be around because it’s not like she would leave the house. We turned the corner to see her with her shoes on and a key in her hand, attempting to unlock the door to the outside! 

I may feel frustrated with Sarah’s temper and stubbornness, but I do love her passion and determination, which are really perhaps all the same thing.

Sarah has had some wonderfully connected, playful, imaginative times with her volunteers in the SR room recently. With Z., Sarah initiated a whole scenario regarding a missing number on Z’s watch. Sarah pretended to go downstairs to the basement to get materials to fix the 9.

I hope you all had good weekends. 

May 3

There are many words of wisdom out in the world about seizing the moment and not delaying your goals or dreams. Often when I read those words I think they must be meaning that people should dive into hard and ambitious things. I have decided for now to interpret them as meaning I can seize the day for reading fun books and doing fun things. I am now on my third fun book in a row. Usually I let myself read one page-turner and then I move towards something less page-turny, something either educational or something to prove I am an academic person. What often happens is that then I stop reading all together for a few months. So, bring on the page-turners. Bring on the fun. This may make me less productive around the house, though I'm not actually sure of that. I think I just spend less time on Facebook or wading through cruddy feelings. The actual time of cleaning up or doing things on my to-do list may be the same. I may actually be more productive because I am getting so much me-time that I don't feel justified in grumping about other tasks. Well, not grumping much. 

I bought little books for the girls to collect their stickers. Now I give them stickers when I feel they have done something particularly well. There isn't really any end goal other than a sticker in a special book. I'm not using it as a big motivator, but it does feel like a tangible way to recognize good behavior, especially in retrospect when the moment may have passed. 

Sonia, Carl, and I revisited some of our struggly areas and have made some changes. To earn an extra episode of a tv show, the girls help clean the family room. This makes a huge difference to my experience of the day and the mess in the family room. The rule about getting dressed is now that Sarah has to be dressed to leave the house. That is all. She can wear pajamas in the SR room. If she chooses not to get dressed then she will either skip school/gymnastics or be late and most of the time we have two grown ups so this is possible and our intention will be to truly be relaxed and let the natural consequences occur. I have felt much more relaxed the past few days since we made this new rule.

Often when I turn off the tv, Sarah yells. Sometimes both girls do. Usually I leave or speak sternly or both. A few times this week I have sat down on the sofa with them and suggested we look at a photo book. For the moment, I like this approach. It feels softer. 

I spoke with Sarah's naturopath after the latest round of tests. Sarah's body is a bit healthier and processing things better in some ways but in other ways we haven't progressed or have moved backwards. We will do another customized vitamin and another test. We are trying digestive enzymes again. We have tried them a few times in the past and I thought they either contributed to finger blisters and/or to disfluency when speaking. But, it is clear that Sarah isn't absorbing what she needs to from her food so we have to change something. We are also going to try a paleo protein powder the doctor recommends because she thinks Sarah needs more protein. I am going to work on increasing the protein she gets from meat. Most of her protein comes from nuts, but those are harder to digest. So, while I would like to reduce our meat usage for the good of the environment, for a few months at least I will increase it in the hopes it will help Sarah's body heal. This feels frustrating to still have so far to go to help Sarah's body. I also feel grateful that I have a naturopath who is looking at everything so comprehensively so that we know what is going on.

I have ended my gluten-free experiment. Carl suggested that it might be good to end it when we didn't have any big plans in case I had an unexpected reaction. I haven't noticed anything so that is nice. I think I will still aim to be low gluten in my diet, but I won't be stringent because that is less fun.

At the end of this month, Sarah will finish preschool. She has been in preschool for 5 years. I feel a bit teary realizing that she is moving on to kindergarten. I truly feel, for the first time, that she is ready. I also feel thrilled about her kindergarten situation. It will be half days, 5 days a week, with one of her current teachers and just 2 or 3 of her current classmates. I will homeschool and do SR for the rest of the time because I think she has to officially get full-time schooling due to her age. I also think SR is wonderful and is one of the best things we do to help Sarah.

I have started giving Sarah opportunities to show what she knows in terms of math equations. I still present equations up to 3 times a day. It is 3 different equations each time, so it is up to 9 equations total. When we started they would all be within one type, such as addition. Now I vary what is in the packs so it is still consistent within a pack but the packs can be addition, subtraction, multiplication, or division. For the addition I have one equation have a choice of two answers and I ask her to pick one. She is right about 70% of the time. Amazing. This could just be luck, but I will still take it and run with it.

I have Sarah practice writing in some way almost every day. Sometimes this means she traces dotted letters that I write. Sometimes we do letters hand-over-hand. Sometimes she draws or writes just on her own. Yesterday before she did a project with Carl, I asked Sarah to write "tool." She did so clearly and with good sizing!

I hope you are all having a beautiful day.