Parent Support Groups

Welcome to Fragile X Friday!  Today’s topic is the importance of support for parents.  Just the mention that my son might have Fragile X was enough to put me into a tailspin of research, worry and more research.  Through that time, I found the Fragile X Listserv, my lifeline.  My sanity saver.  (Seriously)

Just knowing that there are other people out there, in your shoes, experiencing the same fears, hopes and everyday messes that you are is so comforting to me.  Well, if you follow my blog, you know that Nathan’s FX test came back negative.  But, I never unsubscribed to the Fragile X listserv.  Why? 

Autism & Fragile X have so many things in common.  Learning challenges, global delays, school problems, IEP meetings, broken dreams, new hopes and the patient understanding that comes with parenting a child with special needs.  As well, I find that Fragile X parents tend to be far more accepting of their children’s quirks and differences without immediately chalking them up to their genetics.  Autism parents (in my experience) are so busy trying to “fix” things that they assume every quirk is part of autism & is a challenge to be overcome.  Perhaps it is just the difference in intensity that I see in FX parents.  They simply seem calmer.

(Now if you are an Autism parent & took offense to that, remember that I said “in my experience”.  That isn’t you?  Well, good.  That isn’t me either. Let’s keep working on the rest of our “club”)

So, if you want to join the listserv, here’s how:  click here for the instructions. It is a warm, open group of parents, caregivers and friends. I don’t post very often, but the information & support I’ve gotten from this group continues to be a life preserver in the stormy sea of special needs.

2 thoughts on “Parent Support Groups

  1. Amen sister :). It has helped me out in a pinch so many times. There is nothing worse than feeling like no one listens or understands and it is YOUR job to be the advocate…but you don’t know what to advocate for. The listserv folks bring together a number of folks who have been there, done that. They dealt with the legalities and the rights of us. And they can give you a virtual hug to get you through the day. 🙂

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