Tuesday, April 10, 2012


Eric and I again went to Edison Community College last night to talk with a group of future teachers about Fragile X Syndrome. 

We were part of a panel of parents telling the story of their children with a disability.  It was us and the parents of two other children. 

I always like having the opportunity to share our story with others.  We have done it several times over the years. There is something about it that is empowering.  It feels like saying, This is our lives.  Yes it can be hard at times, but we are doing just fine.  And actually, we are doing better than just fine. 

When I think about how uncertain I was when my kids were small, I can see how far I have come.  When they were small and had odd behaviors, I apologized to people on my kids' behalf.  I think I am to the point where I am just proud of my kids for what they are able to do and don't feel embarrassed when they squawk and flap hands in public.  It's really hard for them to cope in those situations sometimes and those things are a comfort to them. Drew does this especially.  Now if I catch someone staring at us, I usually just smile and focus my attention on my sons. 

I had a terrible time when we transitioned from the infant class to the toddler class at early intervention.  I didn't feel okay with it and I worried that Drew would not be okay with it, either.  But as he always does, Drew rose to the challenge and did just fine.  I did too.  Three years later, when it was Blake's turn to move on to the toddler class, I was a lot more confident.

As time has gone on and we've gained more experience in this world of Fragile X and special education, things have gone more smoothly.  We know the processes of IEPs, progress reports, alternate assessments, etc.  I find myself wanting to help other parents who are closer to the beginning of their journey in this world.  I am not sure exactly how I think I'll do that, but I know that if it is God's will, He will work out the details. 

Things always come up and we face new challenges from time to time.  Things don't always go swimmingly.  I am thankful for the Fragile X parents who have been there and have survived thus far and are willing to take time from their still-busy lives to help those of us who are not as well-traveled on the Fragile X trail.


Kim C said...

I'm glad new parents have guides like you and Eric for their journey! And keep teaching the joys of knowing "our kids" to those teachers to be!

fragilemom said...

Great post!