September 28

I've been thinking about pretending. The girls recently walked around the block riding small broomsticks. Amy started making monkey sounds and saying she was a monkey. Sarah heard this and started doing the same thing. At other times Amy says she is a cat. How easily and often kids pretend! Adults do too, I think, but we forget that we are pretending. 

I am trying to sort out how I can honor my experience of something as being overwhelming (or any other emotion) while at the same time giving myself wiggle room to pretend I am not overwhelmed by such things. Maybe I initially was overwhelmed by a situation with lots of commotion and then in recognizing that, it became my story and then I locked myself in. In college, I had a role in a play where I did the opening monologue and then during intermission I did improv interactions with the audience. I was nervous before the play began, but to get in character I had to pretend I wasn't nervous because my character was not nervous. Pretending I wasn't nervous helped me actually let go of my nervousness. So... what if I could pretend that I wasn't overwhelmed by lots of kids yelling or by the idea of home schooling, etc? What if I could pretend to be a mom who didn't resort to anger as a means of controlling my kids sometimes? Would such pretense actually help change the situation? maybe. 

Sarah is doing beautifully with using fuller sentences. I feel like whenever we have a precise language goal it is really easy for me (and others) to work towards it and Sarah excels at language practice. My consultation with M. helped me think about going towards academic goals with the same precision. For instance, instead of just wanting to help her practice writing, our goal could be to help her write her name clearly and with appropriately sized letters in the right order. 

Sometimes Sarah's sensitivity and awareness blow me away. Last night I had my first official cluster headache (CH) in over a year. #(*%&%&$#)((!!!!!!!!! I knew that this was a possibility because of the time of year and my past history with CH, but I was still very disappointed. I have been diligently working on relaxing my jaw and tongue and eye muscles way more often than usual. I have been making choices to be less stressed. I thought this would be enough, but it wasn't. I was up in the night with a headache (mild for a CH but still no picnic) and I still have a whisper of it today. I feel tired and sad and disappointed. When I told Carl about it I started crying. Sarah came in from wherever she had been and stood next to me. Then she said, "Mom feeling sad" and climbed on my lap. She gave me chin presses, looked gently into my eyes, wiped a tear off my cheek, and then stayed snuggled on my lap for maybe half an hour. She seemed so aware of the situation and so kind. 

Most of the word repetition disfluency that we had been noticing has gone away. I'm not sure when it stopped, but I am now considering that maybe it was related to a supplement. Sometimes when the skin on Sarah's fingers gets unhappy and unhealthy then I stop some supplements (whatever was new and the digestive enzymes because she likes to have her fingers in her mouth while she chews the enzymes, which doesn't seem like a good idea). The only way to really know is to get her back on the enzymes and newer supplements and see if the disfluency returns. Maybe it has nothing to do with supplements and is more about her learning whatever new skill she had been learning that meant her language took a small stumble. 

One thing I've been appreciating lately is that when I go to bed I am often feeling excited about seeing the girls in the morning. 

Our field trip this week was to go downtown to see a fountain and tall buildings. Then we went to a restaurant where I was pretty sure we could get something Sarah could eat. I had to bend the food restrictions a very tiny bit but not badly. 

Overall, I think Sarah is doing marvelously with observing what others are doing and doing the same thing. When I observed for a few minutes at the end of preschool Monday and Wednesday, I saw her easily participating with the class for the game or activity. She answered questions when directly asked! She often picks up on what Amy is doing and does it too. In the SR room with me she has been doing lots of isming with pictures of flags. I have been joining approximately. This means I don't do exactly what she does but I am still giving her space to do her thing and my activity is within the same theme. When she was playing exclusively with all of the flag pictures, I started drawing flags on the chalk board. After several minutes, she picked up some chalk and started coloring on the paper flags! Awesome. Little things like this happen all the time. Approximate joining feels like giving a sideways suggestion instead of a direct suggestion and often it works just as well if not better than a direct suggestion.

September 22

Sarah did an amazing job entering her preschool class last Wednesday. She galloped in easily and independently hung her coat and backpack on her hook. Then she galloped to put her name in the name jar. 

One of Sarah's favorite poems has a line about "baby fingers stir stewed pear" so I made pear sauce. The girls helped cut chunks of pear and helped stir and mash, but then Sarah never even tried a bite. Oh well. It was delicious.

Sarah also loves a poem by Gareth Owen about jam on toast: "Why is strawberry jam so red? why is toast so brown? why, when I drop it on the floor, is it always jam side down?"  I made almond bread, and I made jam from frozen raspberries (cooked with a tiny bit of water and lemon juice until very mushy and with most of the liquid boiling off, then adding a bit of honey). This was Sarah's first toast with jam in over two years (not that she ever had jam that often before). It is great to get ideas for homeschooling projects just from what Sarah finds funny or interesting.

Speaking of following her interest, sometimes the answer to what to do for homeschooling is so directly in front of me that I don't see it. I have been wondering how to do a history lesson and then I realized that I could focus on the US flag, which she already loves. My plan is to find blank pictures she can color and also pictures of the flag over time as it changed. We can practice writing "flag." We can count the stars and stripes. We can look at maps of states as they changed and as this country grew over time. We can find pictures of state flags. We can find flags of other countries.

I have been feeling extremely grateful. I am so grateful for my uncle and aunt who support our program financially, giving me the freedom to pursue my vision for our family life and Sarah-Rise. I am so grateful for our wonderful M. who volunteers with Amy, spending two hours a week of delighted, delightful time with Amy. It is so beautiful to eavesdrop on someone who has such an abundance of joy and space to really be with Amy at her pace and on her terms for two hours. The amazing thing is that I am almost used to how we have this gift of time from many volunteers for Sarah. I am so blessed to also have someone for Amy too. 

This weekend I got together in DC with my bookless group. We used to read books together. Now we read whatever we happen to read and share recommendations when we see each other. One friend, Sb, used to be a Sarah-Rise volunteer. She read a favorite SR room book (Press Here by Herve Tullet) to our bookless group. I am moved to tear-prickles in my eyes when I think of it because Sb embodies the three E's that are a cornerstone of Son-Rise. Her enthusiasm and delight are so 110% and she is so caring and creative and amazing. I was so touched remembering how all of that awesomeness was poured into the SR program in the past. What a tremendous gift.

I think that most of us don't quite see how wonderful we ourselves are. We so often think that we could or should do better that we don't see how deeply amazing we are just as we are. Sb and M are two amazing women and I marvel at my good fortune to have them touch my life. To all of my volunteers and helpers, remember that I always see your amazingness, even when you might have a day when you don't feel amazing.

I have also been feeling grateful for my wide group of friends and family in general. I know many parents of kids with special needs have described feeling abandoned by their friends or family. I have never felt abandoned, not even for one minute. My circle of friends has only grown.

As we are in my cluster headache evasion season (due less to the actual season and more to the increased stress that tends to be present), I am doing more Alexander Technique constructive rest. I do a lot of inviting my tongue to be easy and my eye muscles to let go. This is about undoing whatever isn't working so that the right thing can do itself. 

This morning I am feeling tired and creaky. I am feeling less than stellar. I am worrying that I have said the wrong thing here or there. I am hoping that somehow this will still be enough for today to be a good day. Maybe today will just be a day. Even if it feels awkward and creaky as a day, as long as my girls know how much I love them I think I will count today as a success. 

Much love to all of you, whether your day feels creaky or amazing.

September 14

We have had Grandma and Grandpa in town and it has been lovely. I love having lots of family around! Grandma gave me sewing lessons and supervised the creation of a new pair of snail pants for Sarah. These new pants will not fall apart every time they go through the wash. Sarah helped with the pin cushion each time, handing us pins when we needed them. 

One evening, Amy was singing a made-up song about the animals that began with each letter of the alphabet as she completed an alphabet puzzle. Then she moved on to singing the alphabet straight through. Grandma started accompanying her on the piano and Amy kept singing. It was adorable. 

There was one day that started at 4am. For part of the early time, Sarah was in the bathroom looking at books by herself. It was hard to stay mad when I could hear her belting out the words to a song from The Banza by Diane Wolkstein, singing about eating tigers raw.

There is so much that Amy does that I marvel at with loving wonder, because, in part, it seems to be evidence of brilliance or creativity. What if I had the same loving wonder towards Sarah's yelling or any of her isms (stims)? I trust Amy to thrive and be in charge of when she wants to learn new things. What if I trusted Sarah the same way? Trusting but still offering encouragement and assistance? I mostly do, especially in the SR room, but there are certainly places where I don't trust Sarah's interests to lead where I want her to go. Hmm. In The Runaway Bunny by Margaret Wise Brown, there is a page where the mom says if the baby bunny becomes a boat to sail away from her, then she will become the wind and blow him where she wants him to go. Bless my mom's heart, she rewrote our copy to have the mother bunny say she will blow him where he wants to go. What a difference a word can make. With Amy I am essentially wanting to blow her where she wants to go. With Sarah I think there is sometimes (probably when I am judging myself harshly) an under-layer of, "I'll blow you where you want to go but first you have to be the way I want you to be."

Sometimes it feels like being tripped by a low rope when I have certain thoughts in the midst of things seeming to go so well overall. For example, sometimes when Sarah says her customary "making a milkshake" or something similar that isn't quite a full sentence, instead of reveling in her amazing clear speech, I trip over the thought that I can't believe we are still here working on complete sentences and wondering how long it will take and feeling like she is stupid and I will never get us where I want us to be. When I was in first grade I was walking to the playground at school and I forgot that one of the entrance paths was blocked by a thin rope and we were supposed to go a different way. I was walking along and suddenly I was flat on my back. That is sort of how I feel when I suddenly have such ugly thoughts about Sarah or her abilities. Ouch.

A small ode to Sonia... She helps me stay sane and keep me on an even keel. She is there to be wonderful with my kids when I have no space for anything but snippishness. She is there to help me not freak out too much about home schooling and to bring more organization to the parts of home schooling that need it. She helps keep my house from being a dump. She gives our cat some love when he would otherwise be a bit more neglected. She helps me think about food and parenting. She helps me think about almost everything. 

This week, Sonia led the kids in a science project of planting cat grass seeds in plastic cups. The girls loved filling the cups with dirt and sprinkling the seeds in. Then I poured the extra water into the extra dirt and they enjoyed playing in the mud. Then we added the mud to the water table.

There are many times when I don't have the space for the girls' upsets, but sometimes I do and it often helps to do a time-in. I just park myself and let them be upset and then we snuggle and talk. Perhaps I need more time-ins for myself when I am feeling upset. Yesterday had lots and lots of upsets. I'm hoping today has fewer. Yesterday when I would tell the girls to do something and they wouldn't do it, then I felt depressed because it seems like my life is full of issuing requests that are ignored or rejected loudly. I am intending that today I will stay more present with each moment as its own moment instead of lumping it with all of the past. If they don't listen to me, it means they don't want to do this one particular thing. It doesn't mean it will be this way forever. It also doesn't actually mean that this is how all of my minutes are spent. In fact, yesterday had two wonderful snuggly times of reading with the girls on the sofa. As I think about needing to get the girls dressed this morning I feel my intention flagging into despair. Argh. Into the breach! Into the breeches!

September 7

I realized recently that Sarah has acquired or almost acquired a skill that used to seem laughably far away: contributing two spontaneous ideas within a game or play activity. It has been about 5 months since Sonia and I did the developmental model provided by the Son-Rise Program and I'm wondering if instead of seeing this as lax, maybe this is the way for me to do it! In a month we don't always see much change but in 5 months there can be big changes. I'm sure the path to this involved a steady, slow increase, but noticing that might be like noticing a difference between 5 and 6 miles an hour, which might not seem like much. Once we get to 10 miles an hour then it is easier to perceive the difference.

On Monday, Amy and I were playing Colorama. This involves rolling dice to determine which color and shape you pick and then placing it in the corresponding space on the board (at least this is how we play it). Sarah came into the room, sat down, and joined our play! She can play it correctly with very little help.  This is huge, and also slowly becoming less noteworthy because it is more of a given that she has this capability, and that is even huger! (The only challenge now seems to be staying interested for the length of the game.)

During our Tuesday SR session, after playing the Snail game, Sarah folded the board and said she was reading a snail story. I asked her to tell me what it was. She said, "Once upon a time." I got a pen and paper and together we wrote a story. I did the writing and the filler words, but I asked her questions and she provided the details. Our story was about a red snail named Pink who wore pants with a heart patterns and a shirt with dots. For dinner, Pink liked to eat a green cracker and a graham cracker.

We went to Beechwood Farms (part of the Audubon Society) for a field trip on Thursday, and our time included lots of the girls playing in a tunnel, a short walk on a trail, and hanging out in a covered shelter by a pond. In the shelter, Amy wanted a drink from the big water bottle I had that has a safety catch to prevent accidental spilling. Even though Sonia and I were right next to Amy, she wanted Sarah to help. Although Sarah didn't respond to Amy's hundred requests in a row, she did respond when I asked her to come help Amy. I expected that she would open the bottle and take a drink herself but she just opened it and handed it to Amy. What an awesome big sister moment.

Yesterday we went to a pool party. Sarah was mostly interested in the steps at the shallow end and in riding the inflatable shark while it was on dry land. Meanwhile, Amy took to the water like a fish. She loved being in small floaty ring and swimming all around. I am definitely thinking it is time to inquire about swim lessons within the next year. The part I'm less certain about is whether Sarah is ready for that since she had no interest in getting all the way into the pool. Also, we have to be careful about chlorine exposure for Sarah since her body doesn't detox well at the moment. 

Sarah's class at school is putting together a display about each family so each child is to bring in a family picture and a small paper that tells what some of their favorite things are. I asked her questions and for each one she looked at me while I asked (I placed myself right in front of her while she was in the toy car), she considered the question, and then answered clearly and appropriately. Once again, this is huge! And it is becoming a given that of course she can answer such questions, and that is even huger!. Here are her answers:

Favorite food: chocolate bar

Favorite color: pink

Favorite animal: Hello Kitty

Favorite toy: Connect Four

Much love to you all. May you notice whatever small changes are huge or even huger in your own journeys.