"How To" Raise a Child With Dwarfism

Column Contributor Heather Saylor
LPA Today, winter 2008, Vol. 43, No. 3

             The other day I had the privilege of speaking to a graduate class at Loyola University Chicago.  The class was entitled “The Exceptional Child”.  The professor of the class invited me to be the guest lecturer, as an “expert” to give them the parent perspective of having a child with special needs.  When did I become the expert?  I never asked to be the expert, but somehow I find myself in this role.  And, let me just qualify that designation, we all know, I am not an expert.  I’ve had 14 years experience navigating the wonder world of dwarfism and that spectacular world of special education.  So, how did I get here?

            When Ben was born and diagnosed in the hospital with achondroplasia, his dad and I spent the first few hours saying “achon what?”  The March of Dimes fact sheet that was handed to us by a pediatrician told us in the first line of the second paragraph that, “death in the first year is not uncommon.”  WHAT? What did it all mean?

            Thankfully, within days of his birth we were put in touch with two instrumental people Dr. Charles Scott at the A.I. Dupont Institute and a parent, Robin Thibault.  Through the fine tutelage of the team at Dupont and of Robin and the other parents I met inNew JerseyI learned a new language.  Dr. Scott told me, “Get your story straight.  If you cry every time someone points and stares at Ben, or laughs or says isn’t he cute, you will not be helping him.  You need to be OK with his dwarfism so that he can be OK with it.”  That has been the driving force of my parenting.

            So, how do you become OK with the diagnosis?  Acceptance is a process that can be painful at times.  For those of us average stature parents who were perhaps surprised by the diagnosis, it can also be a process that takes time.  I wonder how it feels to be a short stature parent with an average stature child.  Are these acceptance issues there?   In any event, the process begins with learning a new language, exploring a different culture and world.  All very exciting opportunities.

            So, in my “How To” book I would include:

1. Learn the language
2. advocate
3. preparation

And above all, love.

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