Thursday, October 15, 2009

Down Syndrome Awareness -- 31 for 21 -- Is Living With Down Syndrome More Difficult?

Some people have asked me if having a child with Down syndrome is difficult. To answer that, first, let me qualify... we're talking about MY children with Down syndrome... who happen to have no critical health-related issues and are just awesome little barely-delayed guys. And, difficult compared to what? To answer that question, we'd have to consider which child without Down syndrome are we talking about. I've seen a number of children without Down syndrome that I wouldn't consider taking home for even an hour... even if you paid me. I've also got two children with Down syndrome... and they are twins. (A term I never use unless speaking about the fact that they are... twins!) This is, as they say in NY, "a whole nother ballgame!" If you ask me if having twins is difficult I'd answer, "yes, it can be tough at times". Since I have a "singleton" (another term I hate and am using here only to distinguish her from "the twins"), I've experienced the difference between raising a single child and raising twins. Two children at the same developmental level is very different from -- and, I think, more challenging than -- having a single child or even two children as little as 9 months apart! I can tell you that most mothers who have children close in age tell me it's the same as having twins.... And I can tell you that every mother I know with twins -- including me -- will tell you it's not!

Still I can really only speak to what I've got! Right?

So, does the fact that my twin boys have an extra 21st chromosome make my life more difficult? The answer is, "I don't know!" Or, "I can't really answer that question!" Or, "more difficult than what?" Or, more accurately, "I don't go there". You see, what I have is twins with Down syndrome. And, I can't distinguish between their twin hood and their Down syndrome. I also can't distinguish between Down syndrome and no Down syndrome... because my guys have Down syndrome. And, I also can't distinguish between my twins with Down syndrome and any other kid on the face of the earth with or without Down syndrome. Because that's not what I have. I have my twins who happen to have Down syndrome. This is all I know so I can't say whether it's more or less difficult than having any other children with or without a diagnosis. Does that make sense?

Do I think that I do more for my boys because they have Down syndrome? Well, I do more to help them in the areas where they need help. Yes. I also do more for my old soul because that's me. And, I work hard to make sure she doesn't feel slighted. Truth is, I would and do more for any of my children that need more in any particular area. Down syndrome or not. I work with the old soul in math because she perceives that she is not good in math. (She does well in the subject but has a hard time grasping concepts, she says. And, her perception is our reality so...) And, I drive 60 miles per day so the boys can attend an integrated class in a special school because I thought this particular environment would be the best for them. Better than the mainstreamed environment in our local preschool... And better than the environment in the school where 90% of the students have Down syndrome. MY choice and it cost me nothing but my time to make it! The old soul goes to the community public school around the corner. I believe in the public school system. I considered putting her in a progressive and/or Montessori school program given her Old Soul and extraordinary creativity. If I ever felt that the education environment for any of my children was no longer optimal, we'd choose something different! Time, convenience and cost be damned!

I do whatever I feel I need to do -- whatever I perceive is best -- for my kids. It really has nothing to do with whether they have Down syndrome or not. It has to do with what they need. Does the diagnosis come into play... I guess it does... a bit. But you could swap out Down syndrome for any other diagnosis or none at all and I'd be doing the same thing... whatever I need to do for my individual kids! I don't know how to do any different!

I have never looked over the fence to compare. What's the point of that? Every family is unique and each has it's own challenges and blessings. And, I can tell you, in my life, I have never seen greener grass than what's growing in my yard!


  1. So well said Maggie. When I was growing up on my parents boat, people would ask "What's it like living on a boat?"...well, I don't know what it is like living in a house so I don't have anything to compare it to! It is just life as I know it. As always, you hit the nail on the head.

  2. Every family is unique -- how true!! I found out that my older daughter Laurie's teacher also grew up with a sibling with a disability. I asked her if she thought that Laurie was aware that having a sibling with a disability was "different". Her teacher said that probably not, because it's just Laurie's "normal", and she (the teacher) didn't realize that having a sibling with a disability was "different" until she was much, much, much older. I was really glad to hear that!