Tuesday, April 19, 2011

A speaking engagement

Eric and I went to Edison Community College to speak to a class of fifteen future teachers about Fragile X Syndrome and what our lives are like.  The class is called "Teaching Exceptionalities".  It is taught by the boys' former infant teacher at Shelby Hills, Roxanne, who has become a friend to me over the years.

Besides us, there was a couple from our town who have a daughter with Spina Bifida and a couple with a son with Trisomy 23. 

Funny how I know Fragile X inside out and upside down, but felt the need to check the National Fragile X Foundation's website for anything I may be forgetting.  I got the most up-to-date statistics and was good to go.

We gave an overview of FXS, and even drew my family tree on the board for the class to get a better understanding of how the gene is passed.  We told our story of being diagnosed and later of our school experiences.  You could tell that some of the students were actually interested in what we had to say and a couple of them asked some really good questions.  Some text messaged the whole time.  I guess that's to be expected.  We were glad some were interested at all.

In the process of listening to the other couples speak about their kids and their situations, I again discovered how much we have in common.  Frustrations by our child's limitations, but determination to make the most of our child's abilities.  And a desire to have our children fit in with their peers.  There was talk from all of us on things that were socially appropriate. 

At the end, Roxanne asked us to give these future teachers some advice.  From all of us:

1.  Be sure to tell us the good things that our child is doing.  Parents with special needs kids are often told only the problems and that can be frustrating.

2.  Understand that we just want what's best for our child and helping them fit in with their classmates is important.

3.  Respect our knowledge of not just our child but of their disability.  Don't make assumptions based on your book knowledge of a particular disorder. 

Something I forgot to mention, but wish I had was to remember that they are kids first, and foremost.  See them for who they are and not just what they can't do. 

Anyway,  it was an enjoyable evening.  Who doesn't like talking about their kids?


Bonnie@TheFragileXFiles said...

I love that you got to do this. I'd love to talk to a group of teachers like that.

fragilemom said...

Man, wish I could do something like that. The advices (is that right to say?) at the end are great and so true!

Lisa said...

Good to hear that the professor is encouraging her future teachers to think about students other than the mainstream students.
Were you nervous about speaking in front of everyone?

Lisa said...

I was thinking about my comment and that did not come out exactly right. I hope you don't take offense.

Kristiem10 said...


I am not offended! Also, I was not nervous at all. I used to get really nervous when I did speaking engagements, but people are usually so nice about it that I don't get nervous anymore.