It was a constant battle to get people to look at her as an individual and not this person with a huge label and a tiny box. Whenever we had a concern about something or mentioned something about her, people (Doctors and therapists) would say it was because of Down Syndrome. We had to fight for them to see Lucy as a unique individual and not just the Down Syndrome girl.
One example of this was when took Lucy to see the chief orthopedic at Children’s because she wasn’t walking right and we knew something was wrong. He told us some time kid’s with Down’s just walk like that. It took us another visit before he at least said it might be something else, but even then he didn’t refer us to anyone else. After we did some more digging we finally got a referral, from someone else, to a Rheumatologist who very quickly diagnosed her arthritis (JRA) and eventually got it under control. But because the first doctor refused to look past her “Down Syndrome” she could have been in pain a whole lot longer that she needed to.
Then today I had a conversation with Lucy’s Speech Therapist. This lady is wonderful! Today she told me that Lucy told her three different four word sentences. Which in her words, “Is almost advanced for her age.” Advanced, not for kids with Down Syndrome, but for any kid at three and a half. This lady, along with some other therapists and tutors we have found our pushing Lucy to be all that Lucy can be and not what Down Syndrome tells them she can be.
Now I know that in certain ways Lucy fits the Down Syndrome stereo type pretty well, but not nearly in all ways or even most ways. The problem is if you start looking for the Down Syndrome you can get tunnel vision and not see anything else or worse, not expect anything else. And if you don’t expect any thing else you will usually not get anything else.
We don’t want Lucy babied her entire life. We don’t want her just dealt with in school. We don’t want her to get by or get away with stuff just because of her diagnosis. We expect a lot out of our little girl and we find the more we expect the more she blows our expectations out of the water.
Are we going to push her and be these demanding parents her entire life? Of course not! But we will strive to give here the room and the support so that she can achieve anything and everything she has the potential to do in her life. That means no boxes for Lucy! And though she has a label of Down Syndrome, that is not nearly as important as who she is… Lucy Kay!