Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Life with An Extra Chromosome (Adaptive Movement)


Jeremy and I truly believe in inclusion. Rylee goes to a "typical" Kindergarten, and has "typical" students in her classroom. We have done lots of activities since she was a baby (Kinder-Musik, gymnastics, swimming...) in which she was included among other kids her age. With lots of kids comes lots of abilities... lots of similarities, but also lots of differences.

Yet, I think all of us like being involved in some things in which we feel just a little bit more like everyone else. And, maybe for Rylee, right now she does feel that way. I think that is the beautiful innocence of being young.

The truth of the matter is... we haven't really talked about Down syndrome with Rylee. I have such mixed feelings about how to go about doing this. I think it would be difficult for Rylee to understand at this point in her development now, which (fortunately!) gives me some more time to sort it all out.

On the one hand, I know that sometimes things aren't seen as a "big deal" to kids until, of course, you talk about it. Point it out to them. And then it becomes a big deal. I don't want Down syndrome to be a big deal to Rylee. It is just part of who she is.

Yet, on the other hand, I don't want other kids at school to be the ones to tell her she has Down syndrome. (Wow... I definitely would lose my nomination of "Mother of the Year" if Rylee came home one day from school saying, "Everyone tells me I have Down syndrome. Do I?") That is, if I didn't already lose my nomination when I bribed my kids with ice cream for good pictures.

I also believe that in order for her to understand who she is, she has to understand everything about herself. For her to be a self-advocate as she grows up, she has to understand what having Down syndrome means for her. Everyone deserves to know, understand, and embrace their own strengths and weaknesses.

I want Rylee to feel just like everyone else. Yet I want her to know she is different, just as every child is different. I want her to be proud of who she is, and feel accepted and valued among the people she surrounds herself with.

So, to give Rylee the experience of feeling just a little bit more like everyone else, (maybe a bit more than she does in her other environments) she is in a dance class called "Adaptive Movement for Children with Down Syndrome." The class was started several years ago by a phenomenal teacher at the local Dance Gallery, and there are now 2 classes divided into age groups. The kids perform each year at our Buddy Walk, as well as other local events. The performance always seems to be the hit of the event!

Not only do the kids have a great time in class, twirling and laughing and jumping and making silly faces and enjoying each other, but the teacher is very aware of the physical challenges kids with Down syndrome have (to various degrees.) Because of the characteristic of hypotonia (low muscle tone) the activities focus on strengthening muscle tone, balance, posture, and movement awareness. Add in the elements of performance, self confidence, rhythm, creativity, concentration and practice at following directions and you've got an amazing experience!

Rylee loves going to dance class. She doesn't know everyone else in class has Down syndrome. But, someday, when she does know, maybe she'll feel just a little bit more like everyone else on Thursday nights.












4 comments:

Dad said...

I love it! You do a great job!

heather said...

What a great post. I guess I haven't thought much about telling Morgan about the Down syndrome but she is in 1st grade now and I am sure kids will start asking her and telling her she has Ds. I also don't want her to hear that from someone else. Hmmmm...

BTW--love the dance pics!!

mydailyretreat said...

such a touching post...thank you for sharing. love the pics...they look wonderful!

Lisa said...

These pictures are AWESOME. Great thoughts in the post, too :).