Working Hints


#1

What are some things you can do to work with a 1yr. old child that has FXS


#2

For right now, you could start PT (physical therapy), OT (occupational therapy) and SLP (speech/language therapy) if he/she is delayed in those areas.
You can find these therapists at your local hospital, or your pediatrician.
You could also sign up for Early On (this is through the school system; State paid), but since the school year is almost out, you could either opt to wait, or get a jump on it for next year- as you will need assessments.

Tell me a little about your child. Fragile X Syndrome is very broad. Some children are severely affected, some only mild.
Girls tend to be lesser affected than the boys- but not always.

The first step I took was to see which areas my son was most delayed by having him assessed by a Pediatric Neurologist.
Then, I scheduled therapies for those delays, and had him evaluated by the school system he will be attending (he was about 1.5 when we did this).

For Yourself, I would suggest getting to know as much about this Syndrome as possible, and be prepared to be your child’s therapy/medical advocate.
Not all Doctors are specialists in this syndrome. I’ve had to educate my own Doctors a lot.
I would start by contacting Louise Gane at the MIND Institute, University of California/Davis to see if they are doing any clinical trials. (This was the very BEST thing we ever did):
(916) 703-0238 or louise.gane@ucdmc.ucdavis.edu

Remember this always- Your child is a person who just happens to have Fragile X. Don’t let that define him/her.

I hope this helps!


#3

stacy from michigan, can you call me I lost your number. mark

-----Original Message-----

From: onceagain fragilex-cpt8571@lists.careplace.com
Sent: Apr 15, 2008 6:53 PM
To: mmpopejoy4@peoplepc.com
Subject: Re: [fragilex] Working Hints