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Tuesday, October 06, 2015

E is for Expectations

I've mentioned before in my blog that when Kayla was born and I realized she had Down syndrome I didn't really know what to think. My mind went blank. I knew the words "Down syndrome" and I knew enough of the characteristics to know, the moment I saw her face, that she had Down syndrome.

But I had no personal experience with it, I didn't know anyone with Down syndrome. The extent of my knowledge of Down syndrome was that I watched Life Goes On and knew Corky to have Down syndrome, but that was it.

I would say that I had no expectationsfor Kayla which doesn't equate to low expectations. It doesn't mean that I expected her to do nothing; I just didn't know what to expect.

So you learn about expectations, and limits, and capabilities, and possibilities, and abilities. You learn to not have low expectations, but high expectations and you want your child's teachers to have high expectations as well.

But my thinking has shifted somewhat away from high expectations to realistic expectations.

Something I will not do, and a philosophy I won't buy in to, is to have expectations that are unreasonable. I will not use the following phrases about, or to, Kayla: "You can do anything you want to do." "You can do whatever you want as long as you put your mind to it." "You can be anything you want to be with hard work and determination." "The possibilities for you are endless." and other similar sentiments.

I know you shouldn't tell your kids they will "never" do or be something, but it's a fact that there are limitations to having an intellectual disability and there are things that she will never be able to do.

Take a look at this scenario and tell me how it would be fair to tell Kayla she "can be anything she wants to be..."

What if Kayla said she wanted to be like her dad and join the Air Force?

Am I supposed to say, "Dream big, Kayla, because you can be anything you want to be!"

Um, no. The fact is she can't join the military, so why should I pretend otherwise by giving her false hope saying she can be anything she wants to be?

She can't be a doctor. She can't be a financial planner. She can't be a WNBA player. She can't be a race car driver. She can't be a lawyer. She can't be a pilot. There are a lot of things she simply can't be, but I am not being negative about it, I'm being realistic.

There will be a lot of doors that won't be open for her to go through. I realize that and I'm not going to spout false superlatives giving the impression that Down syndrome isn't going to limit her in some ways.

Even though I know there are a lot of things she can't do I will try to refrain from always telling her she "can't" do something without letting her try. If she wants to join the military? Ok we'll go to a recruitment office and she can be turned down by them just like they turn down other individuals. Not everyone can join the military. I won't automatically tell her she can't do something, but I will explain to her what she needs to be able to do and let her come to the conclusion if she thinks she can do that particular thing or not. I won't put it in her head that she can be/do anything.

She does have a lot more opportunities available to her than people born with Down syndrome 50+ years ago and for that I am grateful. While those possibilities are many, they are not endless.

I'm not going to tell Lucas those sentiments either. He will have more opportunities than Kayla, but it doesn't mean he can 'be anything.' I think we all have our limits at some point and each person has their own limits. Yes people have overcome challenges and obstacles and all sorts of things life throws in the way to accomplish their goals - to be something people told them they couldn't be - but I think there are a lot of people who put their mind to it and give it their all but still can't accomplish that elusive goal. There is no shame in that either - no shame in saying, "Ok I can't be a XXX, so I'll set my sights on something else."

Kayla will be whatever it is she ends up being, and accomplishing whatever it is she is able to accomplish, and I will encourage, help, teach, lead and do what I can to help her reach those goals.

But I will not give her false praise that she is capable of doing anything and I will not give her the unrealistic expectation that the world is her oyster and she can be whatever she wants to be.

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