It Must be a Mild Case

"It looks like she has a mild case"

"You can hardly tell, it must be mild"

"She hardly looks affected at all"

These are actual comments I have heard from people I know or have met. Luckily, I am not too caught up on having people speak correctly about Down syndrome, because if I was I would have flown off the handle many, many times in the last 2 years.

In case you didn't know, these are ridiculous statements. Down syndrome doesn't work like that.  It's like trying to assert that a woman has a mild case of pregnancy. It just doesn't happen that way.

I don't get upset at people because I know that they are trying to pay Phoenix and I a compliment. They are trying to say "wow, your kid is doing really great" or "your kid is so pretty", but they don't really know how. Part of me thinks that sometimes this is because people frequently aren't able to find the right words to describe what they want to say. Another part of me thinks the statements come from a very negative perception of DS. Because she could only be pretty if it was a mild case. Or she could only be bright and charming if it was a mild case.

I don't fault them for these perceptions. That was likely me 3 years ago. I wouldn't have put "smart" or "pretty" in the same sentence with "Down syndrome". But I do now.

I'm sure all parents do this, but I spent the better part of today looking at my child in wonder and admiring how charming, lovely and engaging she is. And reflecting on how much she improves my life and has helped to sharpen my focus. These are thoughts I never would have imagine myself having after our "why your kid is crappy" talk with the geneticist.

Perspective.

Here's the reality when it comes to DS. You either have DS or you don't.

There is no such thing as a mild case. Just like with regular kids, there is a wide variety or strengths and challenges that each child faces. Some kids with DS have more challenges, some have less. Some kids have more of the facial features, some have less - but there are no mild cases. All of these kids have about the most 'severe' case you can get because they have the extra chromosome in every one of their cells.

Phoenix has a 'severe' case of Down syndrome and look at how awesome she is doing.

Makes you think, doesn't it?

That's Just How We Roll - part 2

The gross motor work we do engage in is often at a local play gym called Gymboree. Gymboree has levelled play gym and music activities, usually in 30 minute or 45 minute sessions. Phoenix takes the 24 month to 28 month class, so she is likely the oldest in the class. The instructor is wonderful as are the other kids and parents. No one has ever said anything about Phoenix being different, and they all include her just like they would any other child.

What I especially like about this class is that it is a regular type of activity that any family could do. It isn't targeted towards kids with DS. It's not run by therapists. It doesn't 'feel' like therapy. And to Phoenix it isn't therapy. It is having fun, at her own pace and her own ability. I brought my camera today to take pics, so here are a few.

The other great aspect of Gymboree is that there is a partnership between this company and our local Down Syndrome Society, so we pay 50% off of the regular monthly fee. This is wonderful for lots of different reasons, but mostly because if I miss a day because I am busy or Phoe is not feeling well or the roads are bad I don't feel guilty about wasting money. We could make up classes if I could find the time during the week, but that usually isn't possible. Maybe we'll pick up a few extra classes over the Christmas holidays while I am home with her for 2 weeks.

That's Just How We Roll

 I've already told you that we don't do a lot of formal therapy in this household. So when authentic opportunities arise that allow Phoenix to rock her gross motor skills, we take advantage of them.  Like here for instance. Phoenix was on her step stool, getting ready for me to brush her teeth, when she decided that she wanted to climb the vanity. Because I wanted to see what she could do I let her. 

And then grabbed the camera.

Working on fine motor skills.

Working on self help skills by trying to open the medicine cabinet and turn the light off and on. 

Climbing in the bathroom. That's just how we roll.