Sunday, August 29, 2010

Reflections on Disablility

Ever since Samara was born something has been plaguing me. Should something be done to 'fix' our kids, or does accepting and loving them mean accepting the way they are and not trying to change it?

Is Samara's whole personality, or even her human-ness tied up in her disability? I know she would seem like a different person if the DS were taken away suddenly, but is that a good or a bad thing?

When we were first given the diagnosis, the only hope I held was that we could give her a 'normal' life if we found out about the alternative treatments. So I jumped online and began my search. You would think it would be fairly easy, considering these treatments have been around a while now. But it took weeks of searching, until I found a few that looked promising. Basically Nutrivene (a Targeted Nutritional Intervention) and The Changing Minds Foundation, which uses a combination of natural therapies with prozac.

Well, I don't know about in the States, but in Australia, it is not so easy to get a script for Prozac for a baby! So we decided to go with TNI. We ordered the stuff (which turns out to taste terrible), and started on our way.

After 6 months, we ran out of supplies, and simply haven't had the money to renew. Now, there is no major research been done into how effective these miracle cures are, and particuarly with TNI, there is the obvious implication of the hundreds of dollars they make out of you for every order you place. Changing Minds is a bit different, as they pretty much give you the information, but don't sell the products.

But in trying to decide whether or not to continue persuing these or any other 'treatments', I am left asking myself a difficult question. One that doesn't seem to have a real answer.

I love Samara just the way she is. There are aspects of the Down Syndrome I don't like. There are other aspects that are totally awesome and I wouldn't want to lose.

But this isn't about me. It's about her. It doesn't matter what I want, like, need etc. It's not about whether or not I am happy with her diagnosis. The real question is 'What is best for Samara'?

Is she better off if we can raise her intellectual ability to within 'normal'? Is she better off if she doesn't 'look' like she has DS? Would she have a better life if we could make her appear as 'normal'?

Or is her disability actually a blessing for her? Is it really so bad that she doesn't ever have to worry about the world ending tomorrow? Is it a problem that she won't be a doctor, lawyer (or worse) a politician? Does it matter if people make assumptions about her because of how she looks (which is incredibly adorable IMHO)?

I struggle to find the answers to these questions. Questions she is too young to understand. But questions that beg answers now, while she is young, and there is a chance to change things.

Questions that are clouded by my own wants and needs. I personally have gained a lot through having a Special Needs child. But why should she 'suffer' (if indeed she does) just so I and others can learn from her?

Every human is born with potential. But is life really all about doing all we can do to reach the limits of that potential? Is it such a bad thing is Christiana becomes a stay at home mother of 12 (her current ambition), rather than using her brain (she is pretty intelligent) and becoming a paediatrician? (as our neighbour is trying to push her towards).

Is it okay for Samara to stay intellectually disabled, or should we try and extend her capabilities to their limits? Which is better for HER?


  1. Great questions. My Bobby (age 2) is such an enthusiastic, energetic, Zen-like little spirit. I continually work to detangle my aspirations for him, from his wishes and the future he will ultimately crate. I can learn a lot from him, and need to remind myself of this, from time to time. Everything happens for a reason, in the end. Nice post.

  2. I'm giving my son supplements mainly for one reason, that he continues being healthy and has the energy to grow up well (which is in itself subjective). I know of one mom whose daughter was still quite immobile even at 12 months, but after taking the same supplements as I, is learning to stand unsupported by 15 months.

    If those supplements happen to help in terms of learning development, then good. If not, I just want him to grow up healthy and strong. I'm not trying to push my son, but we moms try to help any way we can.

    Maybe I'm not addressing your question. I don't know. I'm just 10 weeks in my journey to understanding what the effects of Down syndrome has on my son, as well as on my family.