Clouds, May 2010

Clouds, May 2010

Tuesday, September 10, 2013

cheat sheet

Consider this blog post the CliffsNotes version of back-to-school info...

(Btw, any links in this post will automatically open in a separate window so you will not lose your place :) )

If you have a child with an IEP or 504 Plan & the new school year also means new teachers & new classmates, at least some portion of this will likely be very helpful to you.

My first suggestion would be to listen to the webinar hosted by two LINKS Leaders (& moms) from the National Fragile X Foundation (NFXF)... it's called "Let's Talk!" & they cover many helpful strategies for any age student.

For even more information, you can also view the NFXF Back to School Online Tool Kit

Under the Contents header of the Online Tool Kit, you'll notice the very first section is titled "Positive Student Profile". Here is an example of one of these handy cheat sheets for anyone who works with your kid, to have:








At back-to-school time, following the lead of other parents in the FX community, the top 3 things I have found to be most beneficial are:


1. Scheduling an FX Talk during a teacher in-service day... just an informal chat with faculty to educate the educators, if you will. Even teachers have a lot to learn from us because we know our child best.

2. Distributing a Positive Student Profile
of your child, to anyone who works with them... because we all love cheat sheets, & teachers especially have a lot of student faces & names to remember! You should either hand these out at your FX talk, or distribute them soon after (for example, put one in the appropriate faculty member's mailboxes).

3. Speaking to the students, & as far as your child's classmates specifically, it's important to help them develop an age-appropriate understanding of FX. Kindergarten & early elementary years are more about reiterating how different people are the same on the inside. I have shared a picture book called Special People, Special Ways & found it to be very helpful. Another awesome technique I learned was to use a toy for show-&-tell if you will... one with lights, sounds, & all the bells & whistles. Then take the battery out, & demonstrate how the toy is still a toy even when it's quiet-- & just because something might not work the way you expect, doesn't mean it's not fun to play with.

The main idea to keep in mind with students, teachers, & other faculty is that unfortunately (but fortunately) FX is not a household name like autism. Even if people have heard of it... even if they know who your kid is & they have met your kid... they might not actually be able to explain FX, or how it affects your child.

In general this should guide you on how to help them, help your kid.

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