Saturday, August 21, 2010

Year One Evaluation

Over the past 2 weeks, Brianna had her 1 year evaluation.



It went great. And then it went okay.



The first week Brianna's communication skills were evaluated. The great news is that Brianna is communicating at an age appropriate level.



The next week, Brianna's fine and gross motor skills were assessed. In a nut-shell, Brianna's at a 9-12 month level depending on the task. She's 13 months. For the first time, I had heard that Brianna is delayed.



Boo hoo, poor me right? I know there are so many worse things in life than my child not being able to put pegs on a board or be walking by 13 months. As much as I could rationalise it, I still felt bad...

Brianna has done so amazingly well over the past year that I have not had to deal with much of the negatives of Down Syndrome. When we received her diagnosis almost two years ago (when she was 12 weeks of gestation in utero), we were devastated. We then came to terms with what to expect, we came to a stage of acceptance. But then Bri was born, and she did well - with everything. Any possible thing that could have gone wrong with her didn't, or if it did, she was the best case scenario. To boot, she developed on par with the rate of typically developing children. Brianna has Down Syndrome, we know this. But she's not following the path one would expect of a child with Down Syndrome. At some point, I just decided that I would give her the same expectations of a typically developing child. And now, as of last week, I was given the news that she is in fact behind.

So what now? Do I accept that Brianna is going to be delayed because she has Down Syndrome?

Just as I started thinking heavily about all of this, Brianna laughed loudly catching my attention. I looked up, and there she was, flipping through the pages of one of her board books and laughing hysterically. Her laughter grabbed me out of my funk and put things into perspective. Brianna is a healthy, happy child. Extra emphasis on the HAPPY.

People often ask me how I stay so positive whilst having a child with Down Syndrome. Brianna is how. Brianna is always happy. Brianna is a fighter. There is nothing about her that is sad, or negative. She is not a defeatist.

So, am I a going to just except that Brianna is destined to be delayed? Absolutely not. I will use this imperfect evaluation as motivation to work that much harder to educate Brianna and be that much more dedicated to her daily therapies and exercises. I am revitalised in committing myself to know as much about Down Syndrome as possible so that I can be the best resource to Brianna that I can be.

A week after we had Brianna, a group of doctors specialising in Down Syndrome from the Waisman center visited us at the NICU. Throughout our meeting, they informed us that the average person with Down Syndrome ultimately levels off their education at that of a third grader. I remember looking up at them and firmly saying, "No, I will not accept that."

I will love Brianna and view her as perfect regardless of her educational level or other abilities. But I am her Mommy, and it is my job to fight for her. It is my innate duty to make sure that she has been given the best opportunities and the most firm foundation with which to build her life upon.