Friday, December 4, 2009

What is Apert Syndrome? How do I explain this to my kid?

So you've seen us around at the park, the playground, or the store or maybe you just met us through this blog. You've already read what I wrote about children's comments and allowing them to ask their questions but you'd like to explain to your child what Apert syndrome is in a way to help them know a little more about Jack.

Here's what we say. It's not scripted. It's just always something like this. Jack was born a bit different. He did not have seperate fingers or toes but we got the doctor to seperate them for him. Also, he had some problems with his head that made it grow big but the doctor took care of those problems too. Jack does not see very well so he often uses his hands to feel people and things and Jack is still learning to talk but he is a little boy who likes to run and play just like you.

Its a lot of information to take in so we always finish with the fact that Jack is a little boy who likes to run and play just like them. Children often remember just the last part of what you tell them and that's the most important part, isn't it? We'd appreciate it if you'd stress Jack's sameness and not his differences. He is different. Kids will notice that on their own. Help them to see how he is like them. He very much is and he loves being around other kids.

If you'd like more information on Apert syndrome, please go to This is Jack's main surgeon's website. He gives you a system by system breakdown of what can happen with Apert syndrome. Apert Syndrome affects each child differently. Jack does not have all of the different problems that can happen with Apert syndrome and not everyone with Apert syndrome has the problems that he does.

If you or someone you care about has Apert syndrome, please check out The site has great information and you can read the stories of many individuals. There is also a listserve that you can join for even more information and support.

Don't forget to check out the latest installment of Life is Therapy for ideas on how you can help your child grow and develop through your everyday routine at home.


Melissa aka Equidae said...

Its a great way to explain it to kids....its an idea so when my kid starts growing and meeting 'different' ppl I can give him this sort of explanation. I hope it works as I know some adults instil fear to their children which is sad!

Rachel said...

That's a really awesome explanation for kids! You handle it so well!

sheila said...

Gosh, that is great! I think it's wonderful to explain things to children. It helps them grow up to be loving, caring adults, less dumb. Which *clears throat* we need more of.

mommytoalot said...

That is a great exlanation for children. I have a hard time explaining to kids about Joey..because he doesn't really have a label.
But I do say he has special needs and is a lot like a toddler only bigger and he likes to play.

Michelle said...

Loved this advice - and how true that kids will remember the last thing you said, so stressing the sameness and about being just a kid too is spot on.

Thanks for the link to Apert syndrome as well; something I didn't know about!

Courtney Howell said...

Wow, this blog actually helped me a lot. I have to write a research paper on a genetic disorder and I just happen to have gotten Apert Syndrome. Thanks for the explanation. When I started seeing all this big long words like Bicoronal synostosis I just got confused. Would you mind if I put your story in my paper? It would definitely help :)

Anonymous said...

awesome blog, do you have twitter or facebook? i will bookmark this page thanks. lina holzbauer