I feel like I could write two entirely different updates with entirely different perspectives. Maybe that is always the case with all of life.
There have been many moments that have been sooooooo hard and I have felt so done, tired, weary, scared, despairing, and at my wit’s end for what to do. It is disheartening to feel like I will have moments every day for the rest of my life with Sarah screaming and/or refusing to move. (I realize it might not actually be that way forever.) Sometimes it is like she suddenly becomes a different person, switching from easy-going to stubborn fighting with no warning of the switch. We had two mornings where she was unusually cooperative with coming down to breakfast and even snuggled on my lap as she ate. Then as soon as I said it was time to go get dressed, she instantly changed to fighting some part of that. (Often she doesn’t fight it.) One morning she was so determined to wear shorts that she was licking them, somehow thinking that made them hers to wear. At my mom’s suggestion, I have started waking us up ten minutes earlier to give us extra wiggle room. This does help, but depending on how many sticky moments we have, we might still be hurrying to put on shoes while the bus waits. Do I need to get us up half an hour earlier? I could try that, but that means 5am, and getting enough sleep is also an important part of things flowing easily. You probably also all heard Sarah’s screaming on Friday when our internet didn’t work so she couldn’t watch a show. Her upset seemed way out of proportion to the problem, even for her. Then again, we all have things like that sometimes in our lives. There are times when she seems unreachable and that is when I get scared. I know that can be part of autism, but she is so often still reachable, that I can feel desperate and despairing and scared when I can’t reach her.
It is useful to hear myself say I’m at my wit’s end. That always seems like a challenge. Really? Am I really out of ideas and resources? Of course not!! But maybe I need to return to basics and remember the key aspects of Son-Rise. I need to wait for Sarah to be ready to connect. If it is an ism that I can join (rather than one I really don’t want her to do, such as spitting), then I should join. I did that briefly yesterday and she did instantly connect to me. It was still within an ism, but it was an ism that included me and Sarah had a sparkle in her eye.
I don’t know what more to do when Sarah is totally unmoving when we need to go somewhere. Do I sit next to her and not move? Maybe. But it is an important skill to be able to leave a place when it is time to leave. When Sarah was younger I could just pick her up, but now that is not really an option unless it is an emergency. I hate these moments. They happen at least once or twice a day on most days. I am tired of them. I don’t know what to do. I wish they would stop.
Honestly, perhaps a large part of my difficulty at the moment (and for the past while) is that I’m fighting the truth of the situation. I put in sooooooo much time and work and love and creativity into getting Sarah where she is now. So much. As did so many other people. And now I feel like that should have been enough and I should be able to coast, thank you very much! But I can’t coast. So I’m being just as reticent as Sarah when she doesn’t move even when it is time to go. It is time to go, to up my creativity and plans, and I’m here essentially protesting that my pajamas are comfy and I would rather not change what I’m doing. ARGH!!!! So humbling to see when I am exactly the same as Sarah, just in a different format.
Now for the flip side of the update. There were some heart-warming, wonderful moments.
One afternoon I left Sarah on her own for a little longer than I maybe should have. She came downstairs and asked if I liked her nails. She had reached the nail polish that I thought was out of reach and put it on her toenails and fingernails. I’m impressed with how well she did overall. Unfortunately, my bathroom rug now has some traces of pink. I don’t want her doing such things without asking me first. However, it really was impressive that she even thought about doing it and then did all the steps necessary to do it. She even told me she was helpful for doing it! She sang an adapted Daniel Tiger song, “It’s ok to wear nail polish, it’s not ok to hurt someone.” Indeed.
There will be a sock hop soon for Sarah’s class. Another parent found a pink jacket from a Grease costume and it happens to have Sarah’s name on it. A few girls invited her to be part of their Pink Ladies group. They sent home nail polish (this was after the nail polish fiasco) and cats-eye glasses for her with a handwritten invitation from one of the girls to Sarah. This is so sweet. This is why I love her school. I thought I found a perfect outfit for her (plaid capri leggings and a cute white blouse with poof sleeves that have a stripe around them) and a plaid dress as the backup option. It turns out she wants nothing to do with my perfect outfit, but she loves the dress. She also has a knit hat that someone made for students of the St. Anthony’s program. She loves wearing it and she looks super adorable. In a week with challenges, it helps to have her looking super adorable.
Amy had her 100th day of school and went all out with covering her shirt with 100 stickers and her pants with 100 stickers and stacking 100 blocks.
May you have adorableness and hope even if things feel really hard.
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