Adel has dysmorphic features. Small head, small chin, wide mouth, ears that are large, low-set and deformed, a skin tag, short philtrum (groove between nose and upper lip)... and that's just on the face. But she's cute. Awfully cute.
I can't help but wonder, as I do with all other aspects of Adel's life, what she will look like when she is older. Will one be able to tell that she has a disorder by looking at her?
And what is better, really? For her disability to be reflected on her face or not? (Not like I get to customize my special needs child, or anything.
)I've worked with kids with disabilities before. I organized events in high school - different group homes or schools would bring the kids or adults with special needs to our school and our girls would interact, play, make crafts with them and all. And I had what to think about.
I had more opportunity to think things through when I was working in schools and day camps. One particular school hires high-functioning individuals with special needs for simple office/paper work. With one of these women, it's obvious that she has some sort of condition when you look at her. She is generally treated with respect, but not pity. People deal with her normally as they would with anyone else in her position.
Another young woman there also has a disability, but she looks just fine. Although she dresses a little funny and wears a fanny pack, she's pretty. When I was working there, she brought around attendance sheets and later collected them. She was treated pretty badly, I am sad to say. People were brusque with her, didn't reply to her greetings, made her wait unnecessarily when she came around to collect the papers.
Maybe the way they were treated wasn't connected to the way they look, but it seemed to me that it was.
It makes sense, but it doesn't make it right. One day last week Zusha went down the slide with Adel, and before they had a chance to stand up, a girl that looked to be at least eight years old slid full force into them. Right as I said, "Hey, why'd you do that?" I noticed out of the corner of my eye that there was a group of special needs girls in the park, and it struck me that she might be in the park with that group. I quickly added in a totally different tone, "It's nice to wait for kids to get up before you go down."
I wonder how many other people were appalled and displeased with her actions without knowing any background info. It would not happen to her classmates with Down Syndrome.
I'm wondering about my Adi. How will she have it in the future? Will people be understanding? Judgmental? So much pondering.
This post was brought about by my getting ready to take Adel to the city for more appointments. I always get all thinky and sometimes a little emotional when it is time for another trip. We went to the neurologist and orthopedist today. There is lots to tell about this trip, but I was on my feet all day (left the house at 9:30 AM and came back at 7 PM) while wearing Adi and hauling along a diaper bag... so typing is one of my least desired activities at this time.
More tomorrow!
It is funny that you posted about looking like they have a disability vs. not looking like that.
ReplyDeleteI notice Norrah's WHS features but for the most part others do not. Most people passing us by think that she looks VERY normal, most say that she looks just like her big sister which makes sense (curls, blue eyes), most talk to her and to me like I am the mother of a typical 20 month old and that makes me happy, i think.
Except when I was at a children's museum and a mom asked me in a rude tone how old my daughter was and WHY was I not letting her get down from the Ergo and play with the rest of the kids her age.
When I said that she had a chromosomal disorder that affected her muscle tone and she was not independently mobile the lady just stared at me and then proceeded to tell me how my lot was better than parents of normal kids who get sick or get in accidents and lose skills. At least my kid never had them to begin with.
Ummm right. If Norrah had looked the part of a kid with a disorder... that conversation would have stopped before it even started. Ha.
I wouldnt change a thing... but still. Interesting that you should bring it up.
I'm sorry Lauren, that you had to go through that! people are so dumb!
ReplyDeleteI have thought these thoughts too, not in context of my own kids, bH, but in general. I don't know which is better or worse.
Hatzlacha with everything and keep strong!
I haven't come across such head-on comments yet. The only experiences I've had was people asking me how old she was and looking a little confused when I answer. Or when they hear her cry in the carriage and think it's a newborn (because of her thin little voice.)
ReplyDeleteBut that woman was ODD, yo. I mean, personally I happen to feel that way, that I'm glad Adel was born with this condition, because it's who she is. Had she developed something similar later in life, I'd be devastated and feel like I lost the child that I had.
But to go around telling people that they should be happy with their unfortunate situation because there are more unfortunate situations out there? Gauche.