Friday, October 19, 2018

"It Doesn't Define Her" - What Exactly Does That Mean?

Many years ago someone complimented me on how we had raised Beth and said that "You can tell you didn't let Down Syndrome define her." I said thank you but I've always wondered what exactly that means. Even before she said it, I've thought about that phrase over the years and tried to figure out what exactly people mean by it.

And please know my heart here, I'm being genuine. I just want to think out loud for a few minutes so feel free to interject at anytime. :)

Sometimes I think Down Syndrome does define Beth. It causes low muscle tone and slower reflexes and for that reason, Beth isn't able to drive a car.

She never learned to balance a bike and never rode again after we took off the training wheels. (We took them off once but she struggled for such a long time, we put them back on and she eventually got so big for the bike that they broke. And they didn't make training wheels any bigger.)

Having Down Syndrome causes her tongue to be larger than normal and that affects her speech. And when she got old enough to realize people couldn't understand her she became withdrawn and shy.

Would she be shy if she didn't have Down Syndrome? I don't think so because when she was young, about 7, 8, 9 years old she was outgoing and friendly, even to strangers.

In the dictionary the word 'define' has this definition:
-To be what characterizes something
-To describe precisely
-To mark the limits of
-To outline clearly

A few posts back I wrote about the day both Beth and Sharaya were born. To be honest, it was really hard to not mention Beth having Down Syndrome. I kept going there, and then would delete what I had just written because I really wanted it to just be about her birth and not her diagnosis. But it was really hard.

So is Beth defined by Down Syndrome?

-- Or --

Does the term "It doesn't define her" mean that she has hobbies? Like she goes swimming or horseback riding? That having Down Syndrome doesn't stop her from doing the things she likes? Is that what it means?

Is it that she tries new things that people think she isn't able to do? That people think having Down Syndrome would limit her abilities? But I think the phrase "Down Syndrome doesn't limit me" would apply better. (Apply better. Is that a real term?)

Anyway, what are your thoughts on this? What do you think it means?


ellen b. said...

I think I like your phrase better, doesn't limit her. I'm also with you on not exactly knowing what "it doesn't define her" means.

Addie Talley, Photographer said...

This is just my opinion and our experience so take it with a grain of salt. We adopted our son who has down syndrome when he was 6 from Hong Kong. We already had 2 bio kids. We tried several times in different ways to get involved with the special needs/down syndrome community but we never really fit in - I think it was because our son was adopted so we had a lot of behavioral rehab involved. We noticed every other kid in the group was very babied and sheltered whereas we were always pushing our son to try new things and to do things he didn't want to do when we knew he could do them - the other parents looked at us like we were crazy and often times would come to his rescue from us. So we quit going to those groups. For me, being defined by having down syndrome means that that is the first thing you consider about that person. I mean our son has limitations, but we always push him to do his best and he lives a relatively normal life. He is mostly non verbal and pretty much refuses to sign, but he practices basketball every day. He taught himself to ride his bike. We make him clean even though he is a typical teenager and never wants to. We often forget that he has down syndrome because we make him do pretty much everything that our typical kids do, he never gets special treatment. I don't know, Im just kind of rambling... it just struck a chord with me remembering how the other parents treated their kids and how they looked at us like we were crazy for treating our son like he was a typical child.... not saying its like that for every parent, it was just our experience... I feel like Im rambling and not sure if Im making sense.