Judging a book by it's cover!

I have a confession to make... I have judged a book by it's cover! I have never been one to bite me tongue or to hide my feelings, but this is different! I have scoured the internet, read books, talked to other parents of kids with Down syndrome, gone to seminars about Down syndrome and parent a child with Down syndrome. I am an "expert" on Down syndrome... Right?!?

Wrong! So totally wrong that I am speechless and embarrassed at myself! For a few years I have become friends with another mom of a seven year old child. We have had playdates and we have met for tea. We have gone to each others children's birthday parties and have met each others spouses. We are not great friends, but we are friendly. And we have something in common, we both have a child with Down syndrome...

This evening while at the hospital for Aliza's therapy I had a few minutes to talk to my friend. We caught up on life, school, the kids, etc. It has been a few months since we last saw each other. We griped about how school is going, but also talked about the accomplishments the kids have made this year in school. We talked about Down syndrome and the challenges both medically and educationally for kids with Down syndrome. This was not unlike many of our discussions. I have always been fond of this friend and felt this connection with her since we first met.

We talked about "labels" and how people label children based on their appearances and diagnosis, but did it really matter what their diagnosis is? Do we need to wear our labels on our sleeve? This is where we had a difference of opinion. Yes, I want Aliza to be treated as anyone else would be treated, no exceptions positive or negative. She has to follow the same rules as the rest of the children at school, in public and at home. However, I believe that children with Down syndrome learn differently than other children, including other children with disabilities. There are more commonalities in ways children with Down syndrome learn than children with other types of learning disabilities. For example, Aliza can not be taught by someone standing in front of her using a board, she needs to have hands on activities and is not an auditory learner. This is common for most children with Down syndrome. So while I do not want Aliza to wear a label on her forehead that says "I have Down syndrome", I would appreciate it if those that were educating her took into consideration her diagnosis of Down syndrome when presenting her with material, or challenging her so as to prevent her from getting confused and defensive. This has been my goal for awhile now, to make sure that everyone involved in educating my child has knowledge of her, but also of issues related to Down syndrome.

So where does my friends opinion lie with this issue? Well, she feels it does not matter what a child's label is, we need to address each childs needs individually. She tells me that used to see a physician at the hospital who would often refer to her child has having Down syndrome and she would have to correct her, whoa, stop the presses, thats right. Her child does not have Down syndrome! For years I have discussed our childrens' disabilities with this person, and never once had her childs diagnosis ever come up. Saying this now, I feel so selfish, however I know that we often discussed her daughters educational challenges and medical needs. I never asked her about the diagnosis of Down syndrome because to me it seemed so obvious. I know that I almost passed out in shock! I said, "you mean your child does not have Down syndrome?" No, but lots of people think that and even people at the school think that, but Down syndrome is not the diagnosis. As a matter of fact, they do not have a diagnosis. I apologized and apologized and apologized. We laughed about the mistake, and she had no idea that I did not know that her child did or did not have Down syndrome. I told her that I have had an eye opening experience about my beliefs about Down syndrome. Although I have always believed that people with Down syndrome look more like their family members than others with Down syndrome, for some reason, I believed this child had Down syndrome.

I left the therapy session humbled by this information and wondering how she must feel without a diagnosis for her childs delays. She said that is hard for them because they do not know why or what is causing the delays. We fight our labels when we are given them and want them when we don't have them. Label or not, I hope to have learned my lesson to never judge a book by it's cover!