May 8

Sarah has had more struggles at school this week, so much so that she came home early on Thursday and we didn’t even try on Friday. We realized that sometimes she was using crying and upset to get out of the room to see Sonia so we experimented with having Sonia not be outside the room (just hidden downstairs so that she was available if things got so difficult that Sarah needed to go home but Sarah didn’t know she was there). I don’t know if Sarah then upped the ante of increased crying and upset as an attempt to see if that would get her to Sonia or if the hard times would have happened anyway. Next week we will experiment with going to the other extreme of having Sonia in the classroom with Sarah, not just as needed but as an active helper to see if we can help Sarah re-engage and let Sarah and her teacher have new experiences with each other, outside of the frustration. This is not at all how I expected Sarah’s school year to go. If anything I would have expected the reverse, of more troubles at the beginning of the year and less at the end. I’m glad we have the flexibility to keep trying new things.

We visited a possible new school for Sarah for next year so now we have a couple of options and just need to take the next steps with each to gather even more information. The new option (new for us, not that it is a new school) is a Catholic school with a classroom just for kids with Down Syndrome or Autism with a 1:3 teacher: student ratio. They do a lot of inclusion with the neurotypical classes, but flexibly depending on what each student is ready for. The main thing that impressed me was their flexibility and desire to work with me throughout the process to fit Sarah’s needs and strengths the best. I know this is the aim in the public schools as well, thus the IEP, but I was still impressed with the responses to some of my concerns and questions. I asked the people at the Catholic school how they respond to a student crying. They said they would want to talk with the parent to understand the motivation behind the crying (attention, getting out of something, sensory discomfort, etc) and come up with a plan for responding. The private school even has the option of a modified school day (fewer hours) if we feel that would be best.

At one point while visiting the school, the person showing us around asked Sonia and I what we thought Sarah’s greatest strength was. When Sonia was asked, I was taking Amy to the bathroom so I had no idea of what her answer had been when I was asked. We each said that Sarah’s greatest strength was how she connected to grown-ups! What an awesome thing that we both had the same answer (it must be true!) and that that would be the strength of someone who used to have trouble connecting. Go Son-Rise! In terms of her greatest need, I think it is connecting to other kids (aside from Amy, with whom she connects well). Academically, I think her greatest strength is reading and the area of greatest need is math.

In the Jenny-headache-journey… as I become ever more aware it is fascinating to notice things in new ways. While visiting the new school was an exciting thing, when we were done I had a roaring shadow of a headache (still not real because of my meds). I was totally not being present with my body and what I was doing with it (probably not breathing fully, probably tensing all of my muscles). Wow. This may seem like an obvious connection but it is actually quite novel to see the relationship so clearly, thus being able to take direct and immediate steps to ameliorate the situation.

On Tuesday we visited Amy’s school for next year for a “meet and greet” with the teachers and other new families. I had both girls with me due to the time of day. It was a bit stressful for me getting out of the house on time and then the setting was not quite what I expected. I felt stressed and anxious regarding some of Sarah’s behavior, horrified that I was embarrassed, and like I was radiating the heat of discomfort. I felt a bit mad that the setting was not as I had understood from the description, but it seemed like I was the only one to have a tough time. On the plus side, this pointed out how I still have fears/beliefs/tight spots that I thought were gone. On Wednesday I felt exhausted and drained and raw. Again, it was interesting to see how deeply and fully I felt the parental hot defensive feelings from Tuesday. I haven’t felt those feelings in a long time, but it used to be a frequent occurrence when Sarah was much younger. I just fear that I am being judged (or that Sarah is being judged). It doesn’t actually matter if I was. What matters was the all-systems-are-go experience of it all and how draining it was. I am grateful that I don’t often experience those feelings, grateful that I have arranged my life in such a way that settings that might trigger it are few and far between. I just didn’t realize I still had some clearing work to do there.

Tuesday evening I had my headache-journey-massage-therapist J. come to the house and work with Sarah. Awesome! She allowed the work and would sit up in between moments of contact from J. to talk to us (I stayed in the room) and give me chin presses. After some work on her jaw, J. asked how she felt and she said, “better.”  The day after the session Sarah was talking about it some and I asked if she wanted another massage from J. and she said yes. Totally awesome! J. was exactly as loving and connected as I want all people who interact with Sarah to be.

In general Son-Rise Program news, there is a new scientific study supporting Son-Rise! http://www.esciencecentral.org/journals/training-parents-to-promote-communication-and-social-behavior-inchildren-with-autism-the-sonrise-program-2375-4427-1000147.php?aid=66836

When G. arrived on Friday for his time with Sarah, Sarah said, “G.’s car is missing a hubcap.” I asked if they had ever discussed this before. He said no. I didn’t know she even knew what a hubcap was!

Friday the girls and I just stayed home all day and it was wonderful. Sarah needed a break from school, Amy’s school was going on a field trip that she didn’t want to go on without me (and I didn’t want to take both girls), and it was so great to not feel any time pressure to go anywhere or do anything. We also needed to fill up our snuggle tanks because today Carl and I leave for a week in Scotland. Woohoo! Sonia will be in charge of everything, with the help of her/Carl’s parents who will stay in our house. We will also have our wonderful volunteers and sitters helping. To all those making this trip possible, THANK YOU!! (I will not be writing next Sunday).

Happy Mother’s Day to all who are mothers, to all who mother anyone or anything in anyway, to all those who help me be a better mother, and to my own wonderful trio of mothers (birth, step, in-law). I am one lucky woman. The river of determination and perseverance and love that runs through me is fed so strongly and steadfastly by my mom that I cannot imagine any of my journeys without her. The way she parented me is what I aspire to in my own parenting. So many people say that they want to be different parents than their own. I feel blessed to want to be the same. I have always felt cherished and supported. I am so thankful for the support of all six of my parents (birth, step, in-law). I also feel extremely grateful to Carl and Sonia for helping me be the mom that I want to be. It is an amazing thing to have had an assistant mom for these past few years. It is an amazing thing to be married to someone who can see my lowest, most-struggly, most ire-filled, most tear-filled moments and still love me and listen so that I can step back into my best self. Everything wonderful and challenging in my life all helps me steer towards being more of the person and parent I want to be so I am really grateful for all of it.

Thank you readers for witnessing my motherhood journey with love and attention. You are a part of it. Happy Mother’s Day to all of you.