I Should Have Said...

To the gentleman at the stables: Thanks for informing me five minutes after you met me that Erik "needs a sibling." Wow! I had absolutely no earthly idea. Now I can follow your advice and start being a good mother. In the meantime, though, please get out of my uterus. I am a very busy woman with things to do.

Oh, one more thing. NEVER label anybody's child you know next to nothing about "severely mentally retarded," like you did my son so casually, unless the parents say these words first, demonstrate they are comfortable with them, and/or they actually even apply. I know parents whose lips have yet to utter those words because of the pain and shock they felt the first time they heard them. I could care less what your credentials are, what your title is, or where the hell you happened to work in the past with developmentally disabled children. You seem like you mean well and have a good heart, but your words will undoubtedly someday destroy a parent who is new at this when you blindside them as you did me.

Sigh...

Teaching Tolerance

The following is from the WSA message board. I still peek in from time to time, and I thought this was a gem that begged to be shared. Hopefully, Megan won't mind. I admire how she handled this situation with class and kindness when it would have been so easy to give the customer the verbal tongue-lashing she so richly deserved (or accidentally pull pepper spray from one's purse and discharge it in her general direction). I sometimes wonder how I will handle situations like this in the future. I have already handed out one of my little information cards I carry with me everywhere in my own purse. I am glad I have more seasoned mothers' footsteps to follow, and I hope I exhibit a fraction of the class and grace they do.

I own a deli/convenience store in a very small town. Everyone knows my son Conner, and, believe me, Conner knows exactly who they are before they even get out of the car. The other day during our daily lunch rush, Conner was going about his normal routine. As I'm running the cash register, he works the crowd (everyone standing in line). My customers love every minute of it as well. Standing towards the end of the line is a middle-aged woman just watching every move my son is making. And as I'm cashing each person out in the line I'm noticing that she is now talking to herself about how this little boy's mother needs to come and get control of him. She just kept talking aloud so that by chance someone might agree with her. So, I just kept one ear and one eye on this situation going on with this lady. She just continued making rude comments about Conner. She went from one thing to another. "This boy is out of control. He needs to have a foot up his a** for how he is behaving." Now, mind you, I am trying to tend to my customers and still trying to pay attention to this woman. I'm getting very angry by this point. As she is getting closer to my register, one of my regular customers comes walking through the door. Conner, of course, goes running up to her and hugs and kisses her, then he decides to give everyone in line a hug and kiss and tell each and every one in the store "WELCOME TO (name deleted) DELI". I'm laughing as he is doing this. He does this all the time, and my regular customers all expect it when he's there. Just as this woman approaches my counter to pay, Conner walks up to her and reaches his hands out to give her a hug. Well, she ignored his approach by fumbling in her purse. Conner then looks her in the face and yells at the top of his lungs, "Give me a hug!" She looked at him and said, "where is your mother? Maybe if she paid more attention to you, you wouldn't have to beg strangers for hugs." Now you can all imagine the fire that was running through me. I collected her money then said, "Conner, come help mommy bag this nice lady's food." As Conner was deciding what size bag to use, I very politely said to her, "I'm very sorry if my son's behavior offended you, but this is who he is. It's called WILLIAMS' SYNDROME. (I pulled my pen off my apron and wrote it down for her) It is a rare genetic disorder. Conner has a number of medical problems as well as developmental delays, and socially Conner is above and beyond where he should be." She said, "Oh, I'm sorry to hear that. What is WS? I've never heard of that. Is it like Down syndrome? Is he slow?" I just looked at her and smiled. I handed her the paper and told her to look it up on the computer. I told her she would have a different opinion about my son after she learned what WS was. I am not religious by any means, but I so many times tell everyone that Conner was given to ME for a reason. He reminds me everyday not to take anything for granted. We do the best we can with what we have been given. Conner then yells, "Yeh, mom, that's right!" and, "Give me high 5." So, of course, I did. She took her bag and I told her to have a good day. People are so quick to make judgements. People can look at my son and know that something is just not right with him. You know they want to ask, but they never do. Personally, I just tell people that "He has Williams' syndrome." I am not ashamed or embarrassed. It opens the door for questions. I feel one of my duties as a WS mother is to educate people.

Megan, mom to Conner

Being Human

Oh, I’ve seen children with Williams syndrome. They don’t count. They’re not even human. They must belong to some other species entirely.

-- Unidentified language researcher at a conference on language and evolution

Ironically, I think it's human nature to dehumanize and demote people in our own minds when we feel threatened by them or lack understandstanding of them. It's extremely comforting to separate ourselves from people who are different because we don't have to face seeing ourselves in them. Different can be scary. I am guilty of letting fear keep me from seeing the people around me as clearly as I should have in the past.

People have been persecuted and dehumanized for centuries for their gender, their religion, their sexual orientation, the color of their skin, their disabilities, or even having a devastating disease. Sadly, the world does not seem to have drastically changed from the days of witch hunts and the Holocaust. We are still living in the Dark Ages in many ways in a world of hate crimes, "ethnic cleansing," and genocide. Children are taught that it's okay to bully other children by their own parents. And that seed is so easily planted when nothing is said and that behavior is silently tolerated.

The more I read about Williams syndrome and autism, the more I realize how young these diagnoses are and how little is really known about the brain. I was horrified to discover that many brilliant people making great strides in scientific research seem to lack a basic sense of compassion for their subjects of study because they consider them just that -- subjects. One researcher placed autistic children in the same group as "robots and chimpanzees," stripping away the human component entirely. Maybe they are afraid to reveal how much of these disorders is a mystery to themselves and reveal themselves as human. Maybe a sense of detachment is one of the ingredients of being a great researcher. I know that the geneticist that confirmed my fears that rainy March day last year lacked anything remotely resembling compassion. I had no doubt the man was brilliant, but he obviously had his nose in a book the majority of his life. These days I find comfort in reading about researchers like Ursula Bellugi, who seem to be able to maintain a human connection with their subjects of study and treat them with dignity and respect.

Maybe it's just hard for me to admit my precious child is one plane ticket away from being the subject of a study at all.

To me, having no compassion is not human.

Article: http://www.psychologicalscience.org/observer/getArticle.cfm?id=2124