Predicting the Future

One of the most difficult things about down syndrome for me are the unknowns. What will Elina be like when she grows up? How will down syndrome effect her as she grows?

Down syndrome is not a one-size-fits-all kind of condition. It effects each individual as uniquely as regular genes. In general though, there is a sort of spectrum with d.s., referred to as "low to high functioning". Many parents are opposed to this terminology, which makes sense to me. We cannot really measure our children and truly put them on a scale, but I do understand that some children with d.s. seem to have more problems with basic skills than others. The question with down syndrome that I have encountered again and again is, "Is she high functioning" or "Is it a very mild down syndrome?"

First of, the idea of having mild or just a little down syndrome is not accurate. You either have the chromosome or you don't. There is a grain of truth to this statement, however. Down syndrome seems to effect each individual differently. Some are able to seem more "typical" or "normal" than others. This has been everyone's perception of Elina. Doctors, nurses, family, strangers have all commented that you "can't tell" Elina has down syndrome, or that it seems to be a very mild case. Some have even told me that they believe it was a misdiagnosis, or that it has become less as she has grown.


Do I get offended by these comments? No, because there is still a part of me that believes them (not the misdiagnosis though, she has had a blood test). There is still that part of me that thinks she won't have any more struggles with development or reading or speaking. I know she has down syndrome, and I wouldn't change it. I am proud of her, of who she is; but still I wonder if she will be "high functioning". It is hard not to think about it when she dazzles every therapist and doctor that she meets with her capabilities.

Will Elina be able to speak clearly? Will she be able to read? What will she be like when she grows up?

There are clues, but no one really knows. Right now, I only have speculation. Only the thing is, I sometimes spend to much energy wondering and looking for signs that she is going to be high functioning. Am I the only one who does this? I don't know. Perhaps other parents who have a child with d.s. are better able to embrace the diagnosis, and to throw all the worries about development out the window.

I'm just not there at times, because I am sometimes still afraid of unknowns and all this unfamiliar territory.

Whatever Elina grows up to be, she will be Elina. I don't have any doubts that I will be able to accept her just the way she is. Being "low functioning" doesn't make someone less valuable, or vice versa. As much as I can, I will focus on the now, and leave tomorrow to worry and wonder about itself.