The Lucky Pumpkin

This saying used to make me upset.  I felt that it was an unfair statement.  Now, however, I think it just might be true.  We have been in our town for almost 2 years, and I have FINALLY been invited to the home of a native of our town.  Of course, it was Emily’s teacher, but still, it was a social event, and we really had a blast!  All of the other people I have befriended are not natives of our town.  I am not sure what this means, except that the natives have no interest in getting close to “newcomers.”  I am from Minnesota, but not from the twin cities area, and really didn’t know anyone from here when we moved here.  My neighbors are the worst.  They are actually really polite, in an almost painful way, because they never take it a step further.  And in case you are wondering, yes, we have invited them over to our house first.  It is most painful for Anna, because the kids in the neighborhood were all friends with each other first, and they just never think to include her in their play.  Luckily, they all live in the block behind us, so she doesn’t get to see it too much, but I often see them playing together when we are on walks.  I sometimes steer us in the other direction so she doesn’t get upset.  Yes, we have invited them to play at our house many times, including inviting them to our new play set in the backyard.  They are just  a lot like their parents, and they steer clear of newcomers.

I hope it has nothing to do with Emily.  I am going to believe that it doesn’t.  Where do you live again?

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.

Just a quick note to say that I have been getting a lot of spam comments lately.  I want you to know that if you left a comment that didn’t get published, that it is because sometimes it is really hard to tell which ones are legitimate.  There have been a few lately that were borderline, so I deleted them.  I don’t mind publishing views that are different than mine, as long as they are respectful in tone.

Also, I think it is obvious by my writing, but I wanted to say that I am NOT a writer by training, and I am not trying to be a professional writer.  I am just putting my feelings and experiences out there to help myself.  If anyone else is helped or entertained by reading this blog, that’s great!