special education

Is E. special?

Of course he is. But aren't all children special?

Does that extra 21st chromosome make him more special?

Does a disability make a person special, or more special, or just a person with an added challenge in her/his life?

E. isn't going to know that there is a different way for him to be. There is no other "normal" that he is changing from or moving toward. He is growing to be the person he was meant to be. It's our job to see that he gets all of the support necessary to reach his full potential, and to provide discipline and shape him morally into the kind of person we want to be around, and the kind of person we want our child to be in the world.

But extra-special? Touched by God? An angel on earth?

Can you hear me raising my eyebrow?

And how is any of the stuff we do for him different from what we need to do for our older, typically-abled kid?

All of this thought processing came from seeing the movie Praying with Lior. I was really excited to go see it - it is a movie about a Jewish boy, Lior, who has Down syndrome, and the preparations for and event of his bar mitzvah. The trailer made it sound like this kid is a really amazing young man with some direct line to God.

I loved the movie, it was wonderful and very interesting, but I took a far different message home with me than I expected: any child who is surrounded by love, attention, patience and support and is given the opportunity to embrace the things that make her/him happiest will thrive.

Lior was a pretty typical teenager in the movie. His siblings were kind and, for the most part, supportive (although his little sister was obviously fed up with all of the attention he got). It also was obvious that he loves music, rhythm, and singing. Both of his parents were rabbis, and he was immersed in the world of Judaism. It clearly played a very strong part in his family life and he also went to an Orthodox Jewish day school. His classmates were AMAZING in their understanding, patience with and compassion for him. His synagogue embraced him.

Are you seeing what I see? Is this kid set up for success, or what?

He loved music, rhythm, singing, and in what context was he doing the most of this? School and temple. And he got a lot of support and positive feedback for it. Davening (prayer) obviously made him very happy, so should we be surprised that he would daven sitting on the play structure in the backyard? Is it a shock that he would want to make his bar mitzvah, and is there really any reason at all to believe, with the amazing support he gets from his dad and step-mom in preparation for his bar mitzvah, that he shouldn't achieve it?

It is a big deal, because our society must not expect folks with disabilities to do these things, and therein lies the problem. I'll admit that when E. was born, I felt like I had to adjust my expectations for him on a major scale, and I am realizing that this is not the case. Or perhaps he is showing me that it's not the case. Okay, so he probably won't go to college. Know what? There are a lot of people who don't go to college, and just because he may have a lower IQ doesn't mean that he won't have a strong work ethic, nor does it mean we shouldn't have high expectations for him. It means we shouldn't expect everything to come easy and for school to necessarily be a snap.

My mom made a comment the other day about whether or not 'so much' education is 'worth it' for kids with disabilities and if it wouldn't perhaps be better for them to get more education in life skills and not worry about the academics as much. I was a bit offended. Isn't it my job, as a parent, to teach my sons their 'life skills'? I remember Life Skills Class in high school, which was about cooking basic food, managing your finances and paying bills. My high school counselor suggested I take it because my schedule needed filling out and, in her opinion, was too heavy in academics (I wanted to take Nature Writing instead of Life Skills and Nature Writing remains, to this day, one of my fondest memories of high school English - thanks Mr. Sushak - ). I told her that I had been helping my mom write out bills since I was 10, already had a checking account, knew how to cook and certainly didn't need a class to teach it to me. (But gosh, think of what an easy A it would have been.)

If someone had told Connor Gifford that he had to take Life Skills class instead of history, would that really have been meeting his needs as well?

(But at the same time, why is Connor's book so inspirational? Connor, buddy, you are awesome, and I love your book, but I love your book because you have created a very concise account of American history. I'd like to see it in most schools. And I do find you inspiring, because you wrote a book! And it's been published! And I'm guessing you didn't let anybody tell you no, or that you can't write a book or be into history because of your Down syndrome. THAT is the inspiring bit.)

But I'm hoping, waiting and working for a day when it's not amazing and incredible that a person who has disabilities does something that they want, pursues something that interests them, or just wants to do what their siblings do. If we get to that point, it hopefully will mean that it will be the norm for the rest of us without disabilities to be ready, willing and able to go the extra mile to support them in reaching their goals.

I'm guessing I will read this in a few years and find it naïve and idealistic, but it's where I'm at now.


4 months, first haircut