31 for 21 – Seeing the symptoms instead of the person

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This month is National Down Syndrome Awareness month. This year I’m joining in the 31 for 21 blogging effort to raise awareness about Trisomy 21. Why 31 for 21? There are 31 days in October, and in T21, the 21st chromosome is triplicated. In the coming days I’ll be sharing about questions I’ve been asked about T21, as well as other topics not related to T21 at all.

This morning I took dd16 and dd11 to a community event for mothers and daughters. A couple of minutes after I walked in, a staff member at one of the schools approached me and peered into the stroller. (Yes, I do sometimes use a stroller rather than the wrap!). She looked at Yirmiyahu and with surprise in her voice said, “He’s so cute!” She had cornered me about a month ago when I was at the school to inquire about if the news she had heard that we had had a baby with special needs was true. At that time I got the impression that she thought this was something hush hush that I should be feeling ashamed or sad about, which isn’t even a tiny bit true. Today she seemed surprised that he was cute because she knew he had T21 and that’s not what she was expecting. (I know, this is my cue to insert a current photo here but I don’t have one so you’ll have to scroll back to other posts that have pictures.:))

I said, “Of course he’s cute!” I had picked him up and she looked at him close up and said, “He looks like a normal baby.” I have an emotional trigger to the word ‘normal’ – does my baby having T21 mean he’s not normal? I replied with a smile, “Yes, he is a normal baby but maybe a little cuter than usual.” “But he doesn’t look like anything is wrong with him,” as she looked at me questioningly. I could tell she was wondering if she was mixing me up with someone else, so I confirmed for her, “He has Down syndrome.” “But he doesn’t look like it. How can you tell? There are five signs, right? But I don’t see any signs of it. Are you sure he has it?”

I wasn’t enjoying this conversation from the very first comment and was trying to remain polite. What does she think, that I’m making it up? I told her there are more than fifty possible signs of Down syndrome (maybe more than 100) and which signs people with T21 have vary from person to person. She wanted to know which signs Yirmiyahu had but I thought that was none of her business so instead I assured her that we had done genetic testing and we were absolutely positive that he has T21.

I don’t tell most people that I see locally that Yirmiyahu has T21. Not because I’m embarrassed or because I want to keep it a secret – not at all. I’m very comfortable speaking about it and Yirmiyahu is perfect just as he is. But I know that most people have negative preconceptions about T21 (as I did before Yirmiyahu was born) and I want to give people a chance to appreciate him as a sweet baby without them looking for the ‘label’ when they first see him. Once they have a chance to see him as a baby rather than as a syndrome, then at a later point I can share with them about his diagnosis and then there’s a place for more helpful dialogue.

Today the woman who was looking at him was looking for signs of his diagnosis rather than seeing him as a baby and that bothered me. I know I can’t control people’s reactions and I’m sure there will be many interesting interactions in the future when I’ll be asked about this issue. But I so much wish for now, and even more for the future as Yirmiyahu gets older and it becomes more obvious that he has T21, that people will be able to see him for himself.

Avivah

Comments

7 responses to “31 for 21 – Seeing the symptoms instead of the person”

October 3, 2012

Susan

Avivah,
Don’t you feel that you got practice for this type of situation from dealing with assumptions people made about your homeschooled children? You’ve had years of advanced training in helping change mindsets.
Moadim L’simcha,
Susan

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October 4, 2012

thegardenrenegade

such an interesting point to ponder- and i think at the core this is what we all wish for all of our children and for ourselves as well: that we will be judged for who we really are and not for the labels that are pasted on us by others… once again i am proud of the strength you showed in the face of an emotional bully; i always learn so much from how you conduct yourself. gut moed- julie

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October 4, 2012

Anne

Thank you for sharing! Even with an aunt with T21 I find I know very little, especially about children with T21. I love that in addition to your perspective I can click through to other blogs as well.

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October 4, 2012

adinakopinsky

That is interesting considering that Down’s babies and children are known to be exceptionally cute and friendly kids. I always assume when I meet a Down’s child or adult that I am about to meet a very sweet person. I suppose that is also a stereotyping assumption, but at least it is a positive one!

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October 4, 2012

Allegra

My daughter is on the autistic spectrum, and she really dislikes it when people (as in, for instance, school staff) are given this information because she has found, time and again, that people make assumptions about her based on the label, rather than taking time to get to know her as a person. I have always held though that the label isn’t the problem – it’s the beholder’s understanding (or lack of it) that causes difficulties. Labels are there because we need them to aid our understanding of the world around us – trying finding the right tinned food in a supermarket, or a book in a library – without labels. Of course, those labels are only as useful as your understanding of them – if you find them all labelled in Chinese (that is, assuming you are not a Chinese speaker), or in binary (assuming you are not a computer programmer), you will still struggle to identify the correct one.

And yes, I know that people are not tins of food, or books on a shelf – which is why, much as we need them in order to orient ourselves (our reactions to a new person in our lives will be guided, to start with, by the labels we attach to them – male, female, young, old, foreign, native, and so on), we should all be prepared to have assumptions challenged, no matter how much understanding of the label we think we have. Going back to my daughter, one of our favourite quotes on autism is “When you have met one autistic person…. You have met one autistic person”. I believe that this holds true for any label that has ever been attached to a human being. Labels can be useful, and can be helpful…. But only up to a point, and only if we allow them to be so.

And btw, hello – I have been quietly following the blog for a while now, but never felt I had enough to contribute in order to comment.

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October 5, 2012

Rena

repeat here: The oilam is goilam, the oilam is goilam, the oilam is goilam….

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October 5, 2012

meryle schreiber

Thank you for being the voice of so many mothers out there. I believe your experience transverses so many diffrent child development issues from everything from T21 to querky kids and children with learning diffrences. It is hard for those mothers who have children who do not fit in a stereotypical box. Especially when outsiders are quick to “label” and reflect their own insecuities and expectations which generate so much unhealthy reteroric and does nothing productive. You are a true light unto so many other women out there. Thank you for being on the “front lines” for so many women who might not have a voice.

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