Sunday, July 29, 2012

I Don't Care That People Think My Kid Is "Happy"

There is a stereotype for individuals who have Down syndrome. It goes something like this, "People with Down syndrome are always happy." In some of the first real information you can find online about Down syndrome, there is a great article entitled, "Myths and Truths (about Down syndrome)" and if you haven't read it, you can check it out here.  About this "Happiness" problem, the National Down syndrome Society says:

"Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior."

Here's the thing:  I think that when people say that people with Ds are always happy, they don't literally mean ALWAYS. I think many people have positive experiences with people who have Down syndrome. I think stereotypes exist because there is some element of truth. I think that my son, Elijah's general demeanor is more "happy" than anything else. I'm not saying he doesn't cry or get upset or act stubborn or throw things or pull people's hair (mostly mine). He does all of those things. A LOT. 

Call me crazy, but I refuse to get upset or feel like my child is being marginalized because people say he's...gasp...Happy. 

We're a sensitive bunch, those of us who have a child with special needs. We need to advocate just a little harder, we need to toughen up just a little bit more, and we hurt when our children aren't seen for everything they are or when their "disabilities" are recognized first. However, there are a band wagon of parents who are so quick to respond to any kind of indication that people think their child with Ds might be especially happy.  One example is from a blog that I LOVE. You can read the post I'm referring to here. The writer shares an experience from when she was pregnant with her first child. The baby had 3 "markers" in an ultrasound that were consistent with Down syndrome. She found herself kind of excited.  Turns out, her baby was not born with Down syndrome and while she felt some relief that he wouldn't face those kinds of challenges, she was also disappointed. She was disappointed because her experiences with people, and children in particular, with Down syndrome had been so positive and life affirming. In the comments section of her post, many parents of children with Down syndrome were quick to jump at the chance to correct her, and say that (and I paraphrase) People with Ds are not always happy, they have a range of emotions, and to describe them as such is a burden that is unfair for them to carry.  Are. you. kidding. me. ?????  

I want to break down the barriers that say that my kid is limited. I want to break down the barriers that say that my kid is stupid. I want to break down the barriers that say that my kid is a drain on society. I want to break down the barriers that say that my kid is unworthy of life. THESE are the things that I think are both hurtful and untrue.  I'm not going to waste any breath or time on destroying the myth that my kid is always happy.  Because I think if you asked anyone who said this, they would clarify their statement to say that the statement "being happy all of the time", isn't meant to imply that this person doesn't experience a whole range of other emotions. 

 I don't get it. In this case, as a community, I think we could all take a collective breath on this one.  Would it be offensive to say, "Comedians are always funny."?  Are the comedians of the world going to come out en force to correct us that they have a full range of emotions and there are definitely times where they are not funny. Umm...don't think so. 

I plan on advocating for my children whenever necessary. Maybe I do wear the proverbial "rose colored glasses" when it comes to people's intent with their words. It's possible. However, for now, I really don't care that people think my kid is happy.

And here he is...not specifically being "happy", but content none the less...


Thursday, July 19, 2012

Summer is a State of Mind

He's wearing his glasses again!!!!!!!!!!!!!!!!!!!




I can't completely explain it, other than with a concerted effort and the help of our therapists, we persisted in making Elijah keep the glasses on his face.  It took us holding his hands down, lots of distraction and a calm demeanor when he managed to get them off. Rinse and Repeat. I think that once he got over the fact that the glasses were resting on his face, that he may have actually realized, Hey! I can see pretty good! Because day by day, he resisted them less and less. Now, he's wearing them more than he's taking them off. They are the first thing he goes for if he's frustrated, and I have to be careful with my reactions to it so that it doesn't become a game.  It's a huge win. His prescription is pretty strong (he's near-sighted, so he has difficulty with his distance vision) and I'm noticing a subtle difference primarily in his depth perception.  When he stacks blocks without his glasses, he tends to "overshoot" the block and then has to pull back to adjust the block so that it balances on the other.  With his glasses, it's a much more direct placement.  I'm hoping we're into a new phase that includes regular use of his glasses, but as I'm learning: Just as you think you have one thing figured out with your kid, something changes. It's about being patient and flexible, right?

I haven't been keeping up with my blogging much this summer, and here are some of the best reasons why:





We took a mini-trip to Palm Springs to hang with our close friends, Larissa and Adam, and so that I could attend a National Dance Competition that some of my Ballet Students were competing in. It was such a necessary break from our regular schedule to just hang out in the pool, read great novels, cook, and eat and drink! It was only a two day getaway, but for us, it was great!

The boys and I have been finding things to do that we often don't have time for during the regular school year. We explored a wonderful children's museum, called Kidspace, located in Pasadena.  It's a great, interactive museum that you could happily spend all day exploring the many things to play in and with.

Kidspace with Milo4

Emerging from the "ant hole"...

Kidspace with Milo2
Exploring and resting (being a trooper during what is normally nap time!)

Kidspace with Milo1
The river. Kids can climb right in, tromp through it and splash to their hearts content (or until another kid gets mad...)

Christian has taken a huge interest in space lately, and been begging me to hang some planets and stars from his bedroom ceiling. So, I grabbed some styrofoam balls we had left over from an event I'd done and made our own planets!  We found the glow in the dark stars and moon that will make our ceiling display complete, at the Kidspace museum's gift shop!

Kidspace with Milo3

I'm also taking full license of summer to enjoy some great novels.  I love to read and when it's a great book, I FIND time for it.  I zipped through 3 novels in the last few weeks, because they were THAT good! I've also created a little extra time for my yoga practice again.  It changes my life when I do it. I find I am so much more patient and have more energy for just "playing" with my little guys.  There has been some time with girlfriends and some playdates here and there.  Oh yeah- and the never ending To-Do list for a new division of my Event Design business.  I am SO excited about some additions we're creating in my business, but until it's all ready I can't share the details.  I'll be shouting from the rooftops when it's ready though- I have such high hopes!!

I have also had a very fulfilling year with my teaching job.  I choreographed my first ballet competition piece this year.  The girls scored well and have grown an enormous amount.  I am so proud and am ready to give them more challenges next year.  We're coming up on a short break from the dance studio, but I'm smiling in anticipation of all the new experiences coming down the line.

470862_392919720743776_100000772553819_1023467_1878119815_o Me and my girls, in their costumes for "Tchaikovsky Sweet" (Performed to the Sugarplum Fairy music from "The Nutcracker". Get my play on words?? Hahaha - a little kitschy, but I love it...)'s nearly noon and we're all still in our PJ's. Might be time to get dressed and pretend that we'll be getting something done.  It's funny, because I don't technically get a "Summer Break". I own my own business, so there really is no season that coordinates with vacation time.  But, I think Summer, for me, is more of an Attitude than a season.  It's allowing those mornings of PJs til noon or later without guilt, making time for swimming and reading, yoga and playing....balancing the important work tasks with down time that is chock full of quality time. So, my blogging may be intermittent for a few more weeks until we settle back into a more regular schedule that includes a new Kindergarten schedule for Christian and a new Preschool (Mommy and Me) schedule for Elijah.  For now, I'm owning Summer.

It's a State of Mind. :)