Monday, May 26, 2014

May Q and A... School

Whew. So much for answering a question a day! It is still May though and therefore PWS awareness month, so I will continue to answer questions about PWS.

Again, a summary of several questions: How is school going? Does Ayden Jane have extra help with academics? How does she handle food choices?

Ayden Jane has had a fabulous year! She was prepared for Kindergarten because of the awesome, caring staff at her preschool. As she transitioned into a new school for K I was a little concerned because it is a good sized school with lots of staff, all who most likely would know nothing of PWS. In the days prior to the start I made the rounds. I chatted with her teacher, the school nurse, the principal, the lunch room staff ... I have revisited with people as new things have come up but I can honestly say that they all listened and followed through and that I feel that Ayden Jane is totally safe at school. That may sound strange, but when things like food seeking and/or restrictions, eloping, immune issues, diminished pain response... are involved, safety can be a concern. One year under our belt and zero issues. Whew.

Food wise, we pack lunch, send her own snack daily and supply the teacher with treats for when birthdays or special occasions come along.

As for academics, Ayden Jane is not typical for PWS. She is in a regular class all day with the exception of receiving OT once a week. She does not exhibit the behavioral issues common to PWS (in school anyway) and is not cognitively delayed. There are quirks in her processing and she talks her way through her work a lot (I mean out loud, narrating as she goes .... bless her teachers). She loves routine and structure so school is a great place. She just brought home scores for reading and places at the 67th percentile on a nationally ranked test. I'll take that!

There is one struggle. Writing. I think I'll tackle that tomorrow...

PWS Q and A: Continued from yesterday, how does she do in school?

Part two is the struggle. Writing. It is extremely common for handwriting and the actual organization of thoughts on paper to be a big challenge for kids with PWS. For the physical piece of writing, Ayden Jane has been in occupational therapy (OT) with an awesome OT for a couple years working on hand strength and all the coordination of making a pencil go where you want it. (not to mention cutting, tying shoes, doing buttons) As she started Kindergarten she could hold the pencil and trace things, but she could not make letters. Even looking at them a copying them was not possible. Without a guide to follow her brain just could not plan what was in her head and make it come out of her hands.

Now? She writes them all. Upper and Lower case. She can spell simple words. It is hard. It is exhausting or her. It is slow. Imagine when you write a word having to work very hard at correctly forming each letter, remembering how to make it. Then trying to keep track of where you are in the word to spell it.... I am NOT looking forward to 1st grade homework each night...

Here is another really odd twist. As she became able to make letters and even spell a few words, she would attempt a sentence. All that came out her hands was a string of lines. Not even letters! She would argue loud and strong that it said _______. So strange. Her brain was/is just so much faster than her hands. Now she writes a sentence as a string of letters. No spaces but you can find some words if you look hard.

In the end I believe (hope) it is connected to the moderate speech apraxia she had when little. She understood receptively everything but she did not talk. (expressive) She has made big gains in reading recently and I am hoping that much of the writing piece is partly just lagging like speech did. All the skills are in there, she just can't figure out how to access them yet. 

Ayden Jane loves school. The slow processing seems to be 'less slow'. Her attention span seems to be increasing. As with everything else she works hard. If a time comes when she needs academic support I won't hesitate to find that for her but at this time, overall, she seems to be continuing to gain ground with her peers. She is just one of the gang (well, the quirky one in the gang anyway)

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