With the weekend I get a chance to collect some 'reports' from school for the past week, spend some time with Ayden Jane and get a feel for where we are in this process.
The changes for this week included reducing Acetyl Carnitine (ACL) and adjusting to an increase in gh. Pitolisant was staying the same at 13.5 mg. The little by little tweaking of things can be very stressful. Basically, I take in the information I get from those who see her all week and combine it with what I see. I take a deep breath, pray over each choice and then I check with Dr. Miller to make sure I'm not doing anything crazy.
I let a change go at least a week and assess where we are. It sounds simple enough but it is my kid I'm messing with so the stakes feel really high. I am thrilled to have teachers watching over her at school that know her well, love her and pray for her regularly. It makes it so much easier to turn her over every morning as I pray for the best. This week the reports were fantastic. Here are some highlights.
Please remember that I am simply sharing our experience. I wish I had the power to make this the experience for all kids with PWS but I cannot.
The changes for this week included reducing Acetyl Carnitine (ACL) and adjusting to an increase in gh. Pitolisant was staying the same at 13.5 mg. The little by little tweaking of things can be very stressful. Basically, I take in the information I get from those who see her all week and combine it with what I see. I take a deep breath, pray over each choice and then I check with Dr. Miller to make sure I'm not doing anything crazy.
I let a change go at least a week and assess where we are. It sounds simple enough but it is my kid I'm messing with so the stakes feel really high. I am thrilled to have teachers watching over her at school that know her well, love her and pray for her regularly. It makes it so much easier to turn her over every morning as I pray for the best. This week the reports were fantastic. Here are some highlights.
Please remember that I am simply sharing our experience. I wish I had the power to make this the experience for all kids with PWS but I cannot.
Anxiousness- Compared to previous weeks, her anxiousness has definitely decreased. The only time she got anxious was when she had to stop her S.S. Chpt. 7 Test on Thursday (after an hour). Once I explained she would complete it on Friday all was good!
Focus- Doesn't seem to be as scattered. AJ has struggled somewhat to switch gears when we transition from one subject area or task to another. In the past week, she has been able to transition better and appears to be attending to the lessons better.
Speed of Work Completion- a little faster depending on what the task is requiring her to do. For example in Geometry she has had to cut & paste shapes when sorting by attributes. This has been a lengthy process, but one she perseveres through.
Daily Language Review Quiz definitely went faster this past week. She continues to work even when most students would throw their hands up & throw the towel in.
Processing & Problem Solving- definitely taking in the concepts she's being taught at a faster rate & amazing to see how deeply she understands the concepts. For example in Geometry, the students were asked to draw specific shapes based off of there attributes. There were a total of 8 tasks. ONLY 4 tasks could be drawn the remaining 4 were impossible, but the children had to write why the shapes could not be drawn. AJ was clear in all 4 written responses explaining exactly why this was impossible. *I am attaching the task & will be glad to send home AJ's work so you can see her explanations.
Socially- I've noticed AJ engaging more with her peers.
Classroom- she will approach students to have a conversation
Lunch- she is talking and laughing more than I've ever seen her
Whew. Thankful for weeks like this where God shows up and lets me know to just keep going and follow Him. We are not done yet, but plan to stay right where we are for now.
Janet, do you have a form for teachers to fill out weekly re: the comments above, or did you just ask them about it and this is what they said? Curious if I can get our teachers to do the same type of commenting when i do changes but I'm not sure if they have the time.
ReplyDeleteI do not have a formal form or anything. I spent a fair amount of time chatting with her teachers early on... even at the start of school because I thought that this might be coming. Her teacher is just that awesome and perceptive. I texted her and asked her to give me an update in those areas and anything else she could think of when she had a chance. She knows that we are collecting data and finds the whole thing very cool....
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