Wednesday, October 7, 2009

A Gut Fear (Sorry, NOT a PollyAnna Post)

Amy posted HERE about her seeing a person with mental illness/disabilities at an affair.
I would like to touch briefly on the subject of my reactions to older people with Down syndrome. I have posted about it before, but right now I don't have time to search for it (some day I have to make a list of good old posts, but don't hold your breath....), AND its been a long time since then.

When Ricki was young, and I saw people with Down syndrome who were older, and NOT so high functioning, I would cringe. I am not proud to admit it, but I found it very hard to be positive about someone who was drooling, and with their tongue hanging out. Yes, G-d loves them, I realized in my MIND, but in my gut I was repulsed. (SORRY, but I am not going to white-wash this.)In my gut was the fear: Will Ricki be like that some day?
I always told myself "Well, Ricki's getting a better education, I am working with her behavior", etc. But deep down inside the fear was present. And sometimes, today, it still is. When Ricki, in an ornery mood, doesn't wipe a runny nose until I give her an ultimatum, I wonder what will be when I am not around. There are some things about taking care in dress that she seems to not want to be bothered with, and which I need to remind her everyday. And this just increases my fears.
So today, when I see a less-than-perfect looking adult with DS I try to view with compassion, yet the gut fear is still there.... and a determination to prevent such a future. Because MOST people are NOT going to look past her outside appearance. (If it’s hard for me to, what can I expect of people who DON’T have a talented, lovely daughter with Down syndrome??????).... So how she looks will effect how people react to her: Thus in effect, it colors her whole future.

(More, tomarrow)

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE


emma said...

This is something that has been on my mind in the past few days too, it was kind of odd to read it here, now.

There is a huge difference between meeting an adult who you don't know and growing up with your own childs quirks and differences. It's impossible to imagine how our children might be as adults, we will "grow into" their adulthood.

My big fear was more about not being able to communicate or have a close relationship with my son, as he will not develop the way other children do. But we do already have communication and a close relationship, and always will have, no matter how unconventional it maybe.

However, this is the cruel world and yes, people do judge on outward appearances and things such as drooling (which my son does unfortunately) can be pretty off putting. Right now my son still has a cute kid face, but how will peope treat him as an adult? This is my fear, but I can't change him or the way he looks. To be honest, I try not to think about it too much it's so overwhelming.

(sorry for the long reply - you have touched on something that was already haunting me)

Anonymous said...

You are not alone. Coming over from Amy's.

TUC said...

Really, really not alone.

Galiah said...

I am with you here-- When kovy gets a saliva-y residue under his bottom lip from not swallowing sufficiently when speaking, and/or after eating, and i have to keep reminding him to wipe his face, i wonder what i can do to help HIM be more independent in this... as well as ask the speech therapist to be more attentive to this as she works on improving oral-motor stuff with him...