August 12

Sarah floated by herself for 2 seconds!!!!!!!!!! 

Amy did big jumps into the pool while only touching the fingertips of the teacher. They both continue to make such astounding progress. I don’t know how the timing or classes will work when both move onto the next levels, but I will do all that I can to keep B as their teacher. 

A couple of weeks ago there was a boy from Florida with some delays similar to Sarah’s who wandered from home and drowned. This just breaks my heart. He even looked a little like Sarah. I am so glad we already have swim lessons well underway. Sarah seems well aware of her limits with water, as she does in many areas. The thing we most need to work on is how to be safe crossing streets and parking lots and how to not wander off. Yesterday she left the swim locker room while I was in the bathroom. We always stop in the locker room on our way to the pool and we always wait until all of us are done. Except for yesterday. She was just outside the locker room, but I still had at least a minute of panic. Then after the swim lesson she left the pool without telling me. I was waiting for her to get her shoes and I was helping Amy dry off. I looked up to see Sarah on the track next to the pool. I’m not even sure we are allowed to be there, but certainly not when dripping wet and not without a parent. When I was speaking to her about not wandering off she spat on the floor. She often spits when she is mad. But on the carpeted floor of the gym! I took away her post-swim lollipop. I feel rather exasperated about getting her to listen and follow limits and rules better. To say she wanders off maybe isn’t right because I’m sure she feels purposeful and knows where she is going. But it is not ok to do this without asking me or telling me. And she doesn’t seem to get this despite repeated explanations. I am feeling so frustrated.

Last weekend we went to the playground for a bit. As we headed home, Amy was upset that they had to share the scooter. I said she was riding the Grumpitude, and I stared carrying her while pretending to ride a scooter and saying, “grump, grump, grump.” She loved it. 

I recently read an article about kids and their upsets. They are analogous to trains going through tunnels and you don’t want to pull the train sideways out of the tunnel. It has to finish going through on its own. That has been such a helpful perspective, especially as sometimes I seem to be in a busy train station. I also feel like the analogy is for anyone going through upsets. I think this morning I am in a bit of a tunnel and I need to get through it.

It has been helpful to realize that weekends are just harder for me than weekdays. I often notice this when Carl is gone and assume it is because he is away. Yet, as I think about most weekends, they just tend to be harder for me. I have less vim and vigor for doing things around the house. I feel sucked into this huge long day with so much that should be done but nothing that I care to do. I think I do better during the week because more things are scheduled and I often have more help from sitters. And I get to go to work for some part of most days. I truly love my work. Not that I don’t truly love my children, but my clients and students don’t whine or yell or fight with each other.

Tuesday we went to Idlewild with the help of our wonderful sitter, E. Sarah spent almost the entire time in the ball pit. Amy spent lots of time in the ball pit but also did some other things. The girls did their best job yet of leaving easily when I said it was time to go. On the way home it was Amy’s turn to pick the music and she picked “Frog Trouble” by Sandra Boynton. For some reason Sarah always protests this choice even though she likes it when I sing the songs on my own. This day she screamed and yelled a lot, escalating the most at track 12. Amy added her upset because she couldn’t hear. I just let those trains chug on past. And then suddenly Sarah paused and said, “oh, mom, it’s ‘Frog Trouble’ [the song]. I like ‘Frog Trouble.’” E. and I just cracked up. For the rest of the ride Sarah was content with the music.

One of my friends whose son had been diagnosed with autism recently had a revelation. She realized that if she took away the label she was able to think more clearly about his various challenges and how to help him. Her assumptions and expectations of his abilities and possibilities changed and he instantly rose to the occasion. (Seriously, 3 tries to spell “occasion” correctly.) This has inspired me to think more about Sarah just as herself and not as any of her diagnostic labels. I hadn’t realized that I was impacted by the labels until I considered removing them. When I remember to think this way it helps me be proud of Sarah in a new way, appreciating that she is basically rocking this thing called life with one arm tied behind her back due to various challenges. Even if her wandering and spitting is frustrating, she is so fiercely determined and she is such a spitfire. These features may be annoying but in the long run I do think they are assets. The phrasing that has been held in high regard about “nevertheless, she persisted” is so true of Sarah, even if sometimes I wish she would heed my explanations and warnings.

I recently read the description of the pain referral for a trigger point in the occipitalis muscle. It feels like pain going through the head to the eye!!!!!!! Despite lots of reading in the past and receiving lots of work and working on my own trigger points, somehow I hadn’t seen this description before. I believe my cluster headache pain is at least in part due to trigger points, probably many of them, but my basic personal description of a headache is that it feels like a knife going through my eye to the back of my head. See the similarity? I have started working on my own trigger points all over my head and neck multiple times a day. In the the past I would try this and get scared away by how sometimes I could bring on a headache. But that points all the more conclusively to trigger point involvement. So I am all hopeful and excited in a way that I haven’t been in months. When I told all of this to Carl and was sort of laughing at myself for how often I get this enthusiastic and hopeful, he said that “hopeful and excited” could be my middle name. I’ll take it!

Hope, excitement, and love to you.