Bear with me, because I feel like I am going to be a little scattered when writing this. Could be the head cold or could be that this topic has been swirling in my head for a while now.
Evan is almost three. Gulp.
When he turns three, he loses early intervention therapies (and beloved therapists) and then becomes a part of the school system in our town. As a part of the transition process, we have several meetings with the child study team where we discuss Evan, schedule new evaluations to be done, look at results, discuss how he has been doing. and make an educational plan. The experience of being a special education teacher with my Learning Disabilities Teacher Consultant certification who now has a child with special needs is a whole different blog entry. Phew, it sure is.
But the one thing that popped up of course is that Evan has Williams Syndrome and the school district professionals had never heard of it, nor had serviced a child with it before. I was thrilled when the school psychologist brought along his intern to our first transition meeting and you could tell she had read up on WS. She asked a lot of informed questions and shared some things she had read. Then a few weeks ago I received an email from the school psychologist saying that they had already done a little presentation on WS for some of the teachers at the school and he hoped to educate most of the staff on WS before Evan starts school.
Great! Wow! They are really proactive, they want to learn and be prepared!
Well, that is how I felt at first and that is how I still “sort of” feel. (and believe me, I am nothing but happy with the process so far, they have been great) But I’m finding myself a little perplexed lately. I wear my WS awareness bracelet. I am THRILLED that the drama club in my school district has chosen the Williams Syndrome Association as their community service project. I will easily and happily discuss Williams Syndrome with any person who wants to learn.
But what about Evan?
Evan is so much more than the term Williams Syndrome. So much more than 25-28 deleted genes out of over 20K. So much more than the starry blue eyes, low muscle tone, heart issues, hypercalcemia, lack of stranger anxiety, the constant song in his heart- that can all be attributed to WS, or not?
He is so much more than that, but….he also is who he is partly because he has WS. It is part of what makes Evan the unique individual he is.
Do you see why I said bear with me? This is tricky. Tricky because now he has a label. He has a label and he isn’t even three years old. Teachers can look up WS on the internet the month before getting Evan in class, and assume that he will be overly anxious, overly friendly, and bad at math. Will they see Evan for Evan? Or will they see WS first?
I teach second grade. And I HEART my students. Big time. I am helping to promote a local event that will support the WSA. There is a ten minute clip that pulls excerpts from the movie Embraceable, that I find to be the most amazing way to learn about Williams Syndrome. You can find the clip HERE if you click on the Vimeo video. The teacher I work with asked if I would consider showing it to my class to spread more awareness with them. I was surprised at how I felt when I considered it. I faltered. I felt anxious, unsure. Would the kids understand? They LOVE Evan. When I bring him into school they follow him around like he is a celebrity. The children in my class are all approximately seven years old. Would this make sense to them? Would they still see Evan as Evan or would this new label be what sticks? Does that matter? I don’t know….
I watch the video clip and I cry. Every time. Not because I am sad. More because it makes sense to me now. Because I see my son in those clips. I see little bits of his possible future. I see myself in the faces of the mothers who are gazing at their child’s colossal smile. And I do not feel at all ashamed or badly. But there is still a part of me that wonders by me pushing the label of WS out there, so boldly, so fervently- what could that mean for Evan?
I want him to have opportunities. I want him to be loved, liked, played with, looked up to, laughed with. The same things most parents want for their child. Do I want him to be the poster child for WS? I don’t know. By blogging and putting our story out there, it certainly seems I do.
This is one of those entries where I would just love to hear your thoughts on this. I have heard from other parents who have chosen to not share the diagnosis with certain people in their lives because of different reasons.
Should we give others the benefit of the doubt and hope that they see our children as whole individuals, and not just a diagnosis?
Labels? Should they stick? What do you think?