It was apparent this week that with Amy’s pretend scenarios she sometimes builds herself such a cage of requirements that she is miserable when things don’t go as they must, but she doesn’t see that she is the one building the cage. I wonder how often I do the same thing. Even this morning I was getting myself a bit tense over when I would write because my plan didn’t include a Sarah-upset or doing “Huh?” snuggle-play-possibly nap time with Sarah. When I remembered the cage analogy I was able to let go of the bars I was mentally rattling.
Sarah is a sparkly, passionate, stubborn child of 17. She has developmental delays and autism. When she was 4 I decided to run a Son-Rise Program, calling it Sarah-Rise. She wasn’t speaking or eating well or potty trained. Eye contact was fleeting, she didn’t play games or play imaginatively. She couldn’t read or write. All of that has changed. I started writing weekly updates so that people could follow our journey.
Sunday, August 9, 2020
August 9: Legacy Day and making the bars of our own cages
Amy’s scenario for this past week was based on the tv show "Ever After High” and the idea of a Legacy book that the offspring of fairytale characters would sign. Every day Amy got several dolls ready for their day and every evening she made sure they were tucked into their dorm room beds. She and A., with a little input from Sarah, made pages for the Legacy book, drawing pictures of each doll or person and writing their destiny. They made keys from Model Magic, which is a type of modeling clay. The cover of the book then had a keyhole and each key would open the book to the correct page. Amy was extremely upset when things weren’t ready for Legacy Day and the book signing to take place on Thursday. Eventually she adapted and Friday became the official signing day. With A.’s help, they decorated our front porch for the ceremony. Amy had purple mesh netting that A. hung around our porch swing. The swing was covered with blankets and the dolls in their finery sat awaiting their turns. Classical music played in the background. Vice Principal Wombat was in attendance. A music stand held the Legacy book. Amy wore her fanciest dress and helped the dolls fit their keys in the lock and sign their pages, declaring out loud their name and that they were ready to pledge their destiny.
Tuesday night, after their SR facetime call with Sc, Sarah and Amy donned pajamas for their evening out at Sc’s house for an outdoor movie. When they arrived, Sc handed them tickets, including tickets for the dolls who came too. Their seats and the doll’s seats were reserved with signs. When Carl and I picked them up at the end, they had a pack of drawings, made by Sc, of them as various animals enjoying pizza and ice-cream at plaid restaurants that were “Now Open” and a drawing of all of them at the movies.
Sarah has been showering daily!! Of her own accord!! This is amazing and is certainly a moment I only ever dreamed of. I often encouraged her showers by saying she would be squeaky clean like a mouse. It seems that the idea of being squeaky clean for A.’s arrival is what makes the difference.
Carl took Sarah to her audiology appointment since it coincided with a mandatory meeting for me regarding resuming my teaching in person at the massage school. I wore my Civil War hoop skirt and dress in addition to my umbrella hat to the meeting to help bring levity about social distancing. While Sarah's hearing test was inconclusive because it seems like one ear needs to equalize the pressure on the drum, it was wonderful that Carl took her. He often gives her more invitations towards independence than I do. He had her lead them to every place they needed to go and had her take care of signing in on the computer. He said she did an amazing job and was very grown-up about the whole thing.
Sarah’s “huh” and “mouse mouse mouse” routine now includes talking about sitting criss-cross with A. (or actually sitting criss-cross as we talk about it) and tapping our legs while singing “Shave and a haircut, two bits!” We also talk about my pillow that flew out of the roof box on our camping trip a year ago. That pillow was never to be seen again and is “nowhere out there” as a play on our “somewhere out there” American Tale references. I am amazed at how this play continues to evolve and grow. Also, sometimes I must admit I really don’t want to do “huh” when she asks to do it. Sometimes I physically show up but I’m not really putting my energy and presence into it. It tends to be especially difficult if we have just had a kerfluffle about something. She is ready faster than I am to drop the troubles and reconnect. I tend to need a bit longer to get back to my own equilibrium before I am ready to joyfully mouse-huh-shave-and-a-haircut things up. Yet, it also brings me great joy to notice how often she prefers this connecting to having time with technology, and that is really saying something!
Sarah’s school will be opening in person, but they are giving each family the opportunity to choose per quarter whether the student will be in the brick-and-mortar building or whether they will do distance learning. We opted to keep Sarah at home, in part to help quell my own anxiety that I know happens any time either child has the slightest sign of not being 100% well. After two months we will reassess the situation.
May you have easy decisions and keys that fit.
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