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Celebrating braids and sneakers!

March 8, 2016

We had a pretty amazing few days here!  My daughter has not asked for her hair to be done in two years because she couldn't tolerate the feelings and sensations. She wanted wavy hair for school so we braided last night! I kept expecting her to ask me to stop but she didn't. She watched in the mirror, turning her head side to side, smiling at her reflection.

Another special milestone is a little purchase I made while she was at school.  I bought a pair of sneakers, brought them home, and she loves them! I can do that now! Just buy something for her that she can wear! It used to take, no exaggeration, a month, many stores, and no less than 20 pair of shoes before she could "settle" on a pair. Then mornings would still be torture having to put them on.

I took a picture this morning that I will always treasure.  This little girl with her wavy hair, new sneakers, and a big genuine smile, sitting with her little sister before school. Younger sis is smiling big and I see the calm on her face now that she can relax in the mornings, without being on guard for the thing that will send her sister in to a meltdown. These two sisters can just be kids together.

I would say, there are no words but if you know me you'd know how silly that would sound (obviously no loss for words here). I could go on and on about all the every day little moments I cherish. For today, that is enough. ❤️❤️❤️

Singing out loud.

My daughter has always been shy and since her anxiety symptoms started a couple of years ago she is painfully uncomfortable having all eyes focused on her. In the classroom it took her months of gentle encouragement by some wonderful teachers for her to be able to speak out loud, answer questions, and participate in classroom discussions. A few months ago I got a progress report from her music teacher stating that she was not "consistent in her efforts" and was performing below expectations for the period. I was surprised because this first-born child has always done her best in school, participating and cooperating with respect and good intention.

When I met with the teacher she confidently explained that my daughter refused to participate and wouldn't sing loud enough for anyone to hear. Specifically, she mouthed the words but no one could hear her voice when it was her turn to sing a short solo line. Really?  THAT is what the problem is?  Of course she isn't going to sing out loud in front of the whole class!  The same issue came up last year and I thought the teacher had understood. Back then, the teacher had told this child that she had to sing loudly right then and there with all her peers watching. Eyes brimming with tears, my daughter couldn't perform and hated to disappoint her teacher, so those tears spilled down her cheeks. Later, her classroom teacher told me the music teacher walked my daughter back to classroom that day and spent extra time reassuring her that she wasn't mad. Since then music has been one of her least liked classes. I took her weekly classroom schedule off the refrigerator because mornings were hard enough without seeing "Music" on the schedule. I hated that such a beloved subject to both of us had become so stressful.

So here we are again a year later. This music teacher telling me she believed my daughter would participate more if there weren't another very quiet child in class who also refused to sing out loud and negatively impacting her. I called on all my inner strength not roll my eyes and tell her what I really thought. Instead, I let her in on some of the struggles we were facing. I explained that she may never be comfortable singing in front of others and that I was perfectly fine if that were the case. I also explained that if music class grades were based primarily on solo vocal performances I was perfectly fine with my daughter failing her class. I wrapped up our conversation asking when she begin teaching a broader lesson plan, incorporating instruments, theory, and history. The teacher stumbled a bit, said it would come in the later years of elementary school, and stated that music history is boring for children. Astounded with her response I couldn't hide the look of surprise on my face. I let her know my daughter would be ready, as she already loves listening to pieces like Smetena's "The Moldau", learning about the composer, the time in history, and contemplating the meaning and emotions within the music. 
Well, sometimes this child surprises me. This discussion occurred about a month before we started PANS treatments. One and a half months later I received the following email from the music teacher.

"Good Afternoon,
I have been meaning to email you since Friday! I was so proud of [her] last Friday in music class! We are playing a game where students have to sing a small part alone and other students have to guess who was singing. Not only did [she] volunteer, we were able to get her singing loud enough for students to hear! YAY!!! I told her I was so proud of her and I would also email you. She seemed very happy and I hope this continues!"

Good for you kiddo! Glad she is enjoying music class again. But still don't care if she performs. As a side note, I am a talker.  You can't shut me up when I get going, but there is no way I will sing for you. Not going to happen. Some of this has nothing to do with PANDAS/PANS -  it is just apples and trees. So kudos my daughter for doing something you never thought you'd do!