The First IEP Meeting: follow up

This is a follow up to the post The First IEP Meeting. Click here to read it.


It went pretty well. Everyone (the case manager, play facilitator, psychologist, OT, PT, and ST*) was very nice and kindly asked my input concerning the evaluation results and looked to me for approval on the IEP goals that had been written.

The Evaluation Feedback

In order for Grant to be enrolled in the CMS special needs preschool program, he needed to be evaluated to determine his current developmental level.

Because he was given the Bayley-III less than a year ago and because he will be evaluated in a couple weeks when we go to the Duke Fragile X Clinic, they did not conduct the {IQ} test during the CMS evaluation. But they captured enough information to make my stomach churn as I, once again, heard everything that Grant struggles with and falls short in.

It's nothing new. I know it. I've heard it several times now. I see it every day. But it is still so very hard to hear. Maybe someday I will be able to hear that kind of feedback without needing a full day to mourn... anyway... I digress.

Needless to say, Grant qualifies for the CMS special needs preschool program.

The Goals

I definitely learned one very valuable lesson: get a copy of the IEP goals ahead of time! I didn't know I had the right (and I didn't have the foresight) to request a copy ahead of time. During the meeting I was so caught up in hearing what the specialists/evaluators had to say, I had a difficult time methodically thinking through the goals (thank-goodness I at least had Grant's Positive Student Profile - see below).

With all that said, I am pleased with the goals. They are a great place to start. I just wish I could have offered a little more input with a couple of them. Oh well. Like a said, a valuable lesson learned. I don't feel the need to have the goals amended - yet. Hopefully Grant will make great strides and in six months we can revisit and add to the goals.

What's Next?

I was told that I would hear from the CMS placement office this week to find out which school Grant will attend and what teacher and therapists he will have. We may have a standard home visit from them as well.

Please pray that Grant will get placed at the school that is closest to us and that his teacher/teacher's assistant/therapists will have tender hearts, follow the IEP, and will be compatible with his learning style.

Positive Student Profile Packet

I received wonderful feedback on the Positive Student Profile packet. It was a great way to share my thoughts on my son and educate others on Fragile X Syndrome.

After my last post, I was asked by several readers to list the articles I used in the packet. The articles are listed below (click on the titles to download your own copy). I have also included again the link for the profile (please note the second page is a great example of how to complete the form).

• Postive Student Profile - I don't know who first created this document but it is fabulous!
• Strategies for day-to-day life by Tracy Murnan Stockhouse and Sarah Scharfenaker
• Sensory Integration Concepts and Fragile X Syndrome by Tracy Murnan Stockhouse
• Fragile X Syndrome and Autism: Common Developmental Pathways? by Kim Cornish, Jeremy Turk and Andrew Levitas (FYI: I think the first column on Table 1, page four, should be labeled "Fragile X Syndrome".)
• I also included a FRAXA.org brochure that does a great job explaining Fragile X Syndrome

There are at least a dozen more articles I found that I could have included, but decided I better keep it to three. There is a wealth of wonderful, helpful information out there. If you come across any articles that would be good to include, please send them to me!


*Terms used in this blog post

IEP:  Individual Education Plan - for children with special needs in a school environment 
OT:  Occupational Therapist 
PT:  Physical Therapist 
ST:  Speech Therapist 
CMS:  Charlotte-Mecklenburg Schools 
Bayley-III: Bayley Scales of Infant and Toddler Development, third edition - a common test/tool used for identifying, measuring, and assessing a child's development 
Positive Student Profile: a form to provide a “snapshot” of a child which should be reflected in his or her IEP