Sunday, January 12, 2014

She's disabled?

As a parent of a child with Rhombecephalosysnapsis I find myself doing one of two things (more often that I would like to admit): 1) explaining why my child is "normal" and just like everyone else or 2) explaining why my child is disabled.

You see, RS is a funny thing. Unlike many other disorders if you look at a person with RS they often look close enough to "normal"  that you wouldn't take notice immediately. There are some visible issues at first glance. The bald patches. The tiny stature. The odd body makeup. The large head. But it isn't grossly different than a typical person.

It often isn't until they take that first big spill or start spinning or flapping that people around you realize there is something different. The frustration is that in my experience half of the people I encounter want to sell me the line of "but she looks so normal". At first I used to take this as a compliment (and from the right person, I still do.) But in some cases it is as if they are accusing you of making up a fictitious disorder. You find yourself explaining the disorder and what goes along with it.

On the other hand I also come across plenty of people who see her big head, tiny body, spinning around, flapping hands, etc. and look at her like she has rabies. To those people I want to scream "She's a normal little girl".

Yes, I do realize how much I am countering myself. And yes, I am talking out of both sides of my mouth. So, you ask, what DO I want? I think what I want is the same as any mom of a child with disabilities. I want people to ask questions (politely), gather information, get informed and then treat her like any other kid. Don't minimize the past six plus years and all of the hard work and time we have put into getting her where she is. Don't treat her like she is an oddity either.

I think all parents of special kids just want a little curiosity and a lot of acceptance.

Posted by Kristen Fescoe


  1. Really well said Kristen. I can totally relate to this with Thomas

  2. We are only at the beginning with my gradson of 13 months and it is very hard to go ahead, to get info about this rare diseas, even because we don't know cases in Italy.