The Lucky Pumpkin

I have been thinking a lot lately about what it means to have Down syndrome. The obvious answer is that it is having an extra 21st chromosome, but how does that manifest in a person? I would think it would express itself the same in everyone, but that is not the case. Emily’s doctor mentioned once that it appears that different people are affected in different ways. For example, Emily is really talking well. At her two-year check-up, he said that she wouldn’t even qualify for speech if she didn’t have a trisomy 21 diagnosis, because she knew so many words, and had some two-word phrases that she was using appropriately. However, her walking has been literally slow and painful. She FINALLY started walking at almost 2 1/2. But, we had to get foot braces to stabilize her loose muscles. Her tone in her feet is really bad. Her right foot rolls in and out so much that it has to hurt her to walk when she is barefoot. I have noticed other kids with DS who appear to have much better muscle tone. I find that fascinating, that different people are affected in different ways by the same condition. Emily’s developmental physician, who specializes in developmental delays, told us that the only thing that she knows for sure is that if you have Down syndrome, you will be shorter than you would have been had you not had DS, and you will have some diminished cognitive abilities. To what extent this will happen is different in every person.

So, why is Emily flourishing (relatively speaking) in speech/communication, but lagging significantly in physical development? I would really love to have the answer. Is it environment? (We sing, read, sign a lot, but admittedly could be more physically active as a family.) Is it genetic (meaning in all the other genes, not related to the DS,) to value singing, talking, etc. more in our family? I do have professional musicians in my ancestry, and of course, my Irish relatives all have the gift of gab! It would be fascinating to do a study on the reaching of milestones across countries, and see if DS is expressed differently in other cultures. I read about a Japanese woman with DS, who got her degree in English Literature, and her librarian’s license. Her parents never told her she had DS until she was an adult. Did she flourish so much because she didn’t have negative expectations on her? I would like to know how other Japanese people with DS typically fare. She did say that she was often sick, and things were difficult, but her parents always supported her and never let her give up. Here is a link to her story. http://www.mct.ne.jp/users/ayaiwamo7/My%20speech%20in%20Singapole.htm

What started me thinking about all of this is that I have really been noticing that Emily needs at least three times the amount of wait time that I feel comfortable giving her. If I ask her, “What color is this?” about a picture in her book, I would normally wait no more than 5 seconds. But if I wait 15 seconds, or even more if necessary, she usually gets the answer right. At first I thought it was because she was waiting for me to give her the answer, and after figuring out that I wasn’t going to give it to her this time, she would finally say it. But, I am starting to think that she just needs that much time to retrieve the answer and say it. I have been wondering if that is the crux of what DS is educationally. That our kids just need a minimum of 3 times the amount of time to give the answer. I am not trying to trivialize things here, I just wonder if not giving enough “wait time” is not a HUGE part the struggles our kids face? This is complicated by the fact that sometimes she can get the answer right away, so I am not sure what is going on there. All I know is I am going to really slow down my interactions with her to allow her enough time to come up with the answer on her own. AND, I will need to remember that at IEP time, and to somehow really make sure the teachers know that about her.