This morning I almost forgot it was Sunday. That is part of why I’m writing later than usual. The other reasons are just taking care of various household things and doing “chirp chirp” snuggles and naps with Sarah.
Sarah’s latest thing of seeming to be extra sensitive to being touched and asking us to apologize for even lightly brushing her hand even if we are helping her to put on her watch as she requested has been extremely challenging for me. Wednesday felt particularly difficult and I had no wiggle room to think creatively or not take it personally. I felt hurt, confused, frustrated, angry, and upset. I was often snarky and sarcastic as I apologized for “helping her” or for not even touching her! Because sometimes she will look at me and ask for an apology when I haven’t even touched her. Her sensitivity is to others as well, not just me. I know it isn’t that physical contact in general hurts because she still initiates chin presses and hugs. When I do lightly touch her by accident and she says “ow” then I ask if it actually hurt or if it was just a surprise. She says it doesn’t actually hurt. And yet sometimes she seems to cringe if I come close. This is not fun. Wednesday evening I completely ran out of space to deal kindly with it and Carl had to step in to help us finish our bedtime routine.
I did learn from watching Carl one evening as he was able to turn the dynamic into something with more play and lightness. When he heated some pie too long in the microwave then Sarah thought that was hilarious. She pretended to heat her own pie too long and he playfully apologized for it being too hot. She laughed. I will tentatively say I have slight hope that Sarah’s new pattern is easing, especially as we are able to respond more lightly. I think when I felt so hurt and frustrated by it, as if the rug had been pulled out from under me once again, that my own tightness didn’t help shift anything for her. Shocking, I know. I cried, I journaled, I talked with my mom, and I scheduled a consultation for Aug 8 with someone who is a Son-Rise specialist. That all helped some and maybe it is becoming slightly less frequent of a dynamic with Sarah. I’m not sure. I don’t always trust my perceptions.
I will say though, in terms of my perceptions, that sometimes they are spot-on. This morning there were two times when I needed to find something that Sarah wanted and couldn’t find. Each time I was able to let my mind be relaxed while I thought about where it might be and each time I was led unerringly to look in the right spot. I don’t know if that mental relaxation could help with the “ow” and apology requests but it certainly can’t hurt. As I got up from our nap my hair apparently brushed her and she wanted an apology. I took my hair in my hand and pretended that it was speaking to say, “I’m sorry.” She laughed and said, “that’s funny.” Similarly she liked it earlier in the week when the empty grocery bag I was carrying apologized for bumping her.
For another unknown reason Sarah is often saying, “we don’t talk about hitting” or “you won’t poke me in the eye because you like my rings.” What??? Where is this coming from?? Carl noticed that sometimes in moments of intense emotional upset Sarah will reference something that perhaps happened at school months ago. So maybe all of this is processing things talked about at school ages ago? Or did she and another kid have a conflict at school? Trying to get answers is rather impossible as she just repeats part of my question as her answer.
Yesterday morning she again felt sick with phlegm and a headache for a few hours. It went on long enough that I worried we needed to cancel all of our plans. And then she guzzled a gatorade and had lunch and seemed fine. It is hard enough to keep my own self hydrated. It is even more challenging to keep someone else hydrated. Once she was better we were able to keep our appointment to renew her passport and go to a graduation party for a family friend. The kids and I had a great time in the pool, and Sarah and I played several games of tossing bean bags towards a goal.
I pay $4 an hour for the kids to help me clean the house or deal with the messes in their own rooms. While I don’t want to have this be forever, because I want their own room upkeep to be on them, I do love that they are motivated to deal with piles. Sarah has been doing a wonderful job actually putting her clothing away instead of just piling it onto her dresser. Amy does a wonderful job dealing with piles of toys and clothes and art supplies that accumulate in various corners and surfaces of the house. They also helped me with a long morning of groceries and errands so I paid them some for that too. Since we don’t give them an allowance it is empowering that they have a way to earn money. I also realized that Sarah does a great job of staying with me in stores and this wasn’t always the case. As with so many things, we eased into this gradually and it has been this way for a while, but it was only on this shopping trip that I realized how I now take it for granted.
Some tremendous firsts from the week include Amy, Sarah, and Amy’s bff going to get ice cream by themselves!! Amy wanted it to be Kids Only so was happy to be responsible for making sure Sarah crossed streets safely and for requesting a clean ice cream scoop because of Sarah’s nut allergy. Now I realize that next time I can tell Sarah to be the one to ask for the clean scoop and say why. And Amy went to Walgreens all by herself to do an errand for me!!
Yesterday Amy and Carl enjoyed a bit of time biking around town for Open Streets. That was after she and I went to her orientation for 6th grade. She will be at her same school and with many of the same classmates but in a new building and with new teachers. This will be the first time she can’t walk to and from school since she was in preschool. We are waiting for the bus pickup and drop-off information.
I forgot in an earlier update to share how funny Sarah found it one evening when I went into her room and exclaimed, “Why are all the Peppa stuffed animals sitting on your bed with crayons?!” Each pig had it’s own pile of crayons. Apparently this was from an imaginary restaurant that Amy was a waitress for, while Sarah and Anna practiced conversation skills while pretending to be at the restaurant and meeting each other for the first time.
I’ve been reading Sitting Pretty by Rebekah Taussig and I highly recommend it. It is eye opening and mind opening about ableism and how pervasive it is, to the extent that we don’t even notice it as optional because it seems like the truth about how the world is. It is helping me open up my perspectives regarding Sarah’s place and possibilities in the world especially as she gets older.
I am also realizing that much of my upset and tension comes from resisting what is. I notice myself thinking “but I don’t want to…” and that is fine, but maybe my thinking I’m somehow entitled to (or wishing for) a path other than the one I’m on is what is causing my emotional blisters. Most of the time I don’t want another path but I wish mine had less potholes. Maybe if I really allow it to be ok that I may have the same conversation loops multiple times a day for multiple years and dive into that truth without resisting, maybe it will be easier. Maybe if I accept that I won’t understand what Sarah is thinking or where her new verbal isms come from, I wouldn’t have the tension born from resistance. Taussig made the insightful point that people think they know what their life path will be with someone who doesn’t have a disability (as a partner or, I would add, as a kid) but really… do we? More often than not people do not in fact get the life path they expect even when they start with what they think are the required ingredients. Sometimes I can think my life would be easier if Sarah was a typical kid, but… would it? Might it not also come with challenges that I didn’t feel equipped to handle?
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