MOSAIC MOMENTS

There has been a lot of discussion lately through IMDSA’s support group about how to tell your child about their diagnosis of mosaic Down syndrome.

Many know, from listening to our NPR show This American Life, we chose a different approach than most do in telling their child.

However, our approach is not always the right approach and I think it all depends on the family and the situation around them.

My thoughts on this is if you speak freely about your child’s diagnosis in front of them when they are young and throughout their life, then it won’t seem like a big deal to them.

It is only a big deal if you make it a big deal.

Then, later when they are old enough to understand and they begin asking questions about their differences, you will know that they are ready to understand the diagnosis.

When Tim was 12 he asked me if he had a medical condition that I hadn’t told him about because I didn’t think he was mature enough to understand.

The question took me by surprise.

So, I told him “Yes” and left it at that.

I had kept the diagnosis from him in his young school years only because I was afraid he would use it as a crutch to not get his work done. In second grade, he had told me that he couldn’t do his homework because he had ADHD. I thought, “Wow! What would he say if he knew he had extra chromosomes?” So, we decided to keep the information secret. We had already begun doing that in school since the teachers who did know were treating him differently–not what we wanted for our son who we knew could succeed if only given the chance.

As I look back on all those years I ask myself if I would have done anything differently.

The answer is “no”. Not at that time I wouldn’t have. Our decision to keep this from Tim and the world was what worked for us at the time.

Now, if we were to begin again today in 2008…. my answer may be different. I am a stronger advocate than I was then. And, I am much older and wiser. I know more how to fight for my son’s rights and I know that today things are a little different–not much–but a little, in the way society views those with different abilities. And, I have a huge family of supporters throughout the world to back me up…something I never had when Tim was young.

The bottom line is, don’t make a big deal about it and it wont become a big deal. If your child had dyslexia you wouldn’t keep them from that information. You would talk about it freely. If your child had ADHD you would talk about it. If your child had Autism you would talk about it.

No matter what your child is diagnosed with it is what they have, not who they are. They wont, all of the sudden, think “Oh no! What am I going to do now?” It is something they have always had and when you explain it to them, when the time comes, then they have a reason for their differences and more than likely, like Tim, they will feel relieved in knowing why instead of worrying about it.

What if someone told you today that YOU had Down syndrome, mosaic Down syndrome, Autism, ADHD, or any other learning disability? After the shock, what would your reaction be?

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