Archive for the ‘Down syndrome’ Category

I was just reading the blog of another Canadian Mom, Andrea, over at a garden of nna mmoy. She’s the mother of a little girl with dwarfism and therefore has to deal with a lot of extra mom shit as she copes with stranger’s reactions to her daughter’s differences. In her latest post “But what do we do?,” she talks about mainstreaming children with visible differences. She makes an compelling point about the way we are trained to deny differences (go read it – she makes an interesting comparison), shushing our children when they ask about them. She also suggests that mainstreaming kids into public schools will hopefully helps with the attitude, which struck me because, once again, it reminded me of Boo’s friend with Down Syndrome.

I hope she’s right. I think she’s right. When Boo became friends with Olivia, she obviously noticed no difference. She still doesn’t. She’s four years old, the world is too full of variety for her to pick up on the subtle differences of a high-functioning child with DS. Asher didn’t notice anything either. Maya, at 9 years old, did. She said, “Olivia looks a bit … different. Is there anything wrong with her?” So I explained about DS, how she was born with it and it caused her to look a bit different, have some health problems and probably have trouble learning as fast as other kids.

She never mentioned it again, although she mentions Olivia plenty. It just wasn’t an issue, until she had to do a biography of an Israeli hero. Maya chose Golda Meir. In doing research, we uncovered something I had no idea about: one of her grandchildren has DS. Her son and his wife divorced immediately after the girl was born and even though her ex-daughter-in-law bucked standards back then and kept her daughter at home, Meir just refused to acknowledge her grandaughter’s existence.

Well, so much for her hero status! Maya was outraged. She could not understand how someone could do that and it was tough trying to explain – “times were different” – what Maya kept coming back to was how upset that little girl must have been that her grandmother never visited her. (And she was right, although I didn’t point this part out to Maya because she was mad enough as was. There was a quote from a brief interview with the now-adult granddaughter after Meir’s death, about how sad the girl was that her grandmother never visited or sent birthday gifts and how none of her friends believed her when she said whose granddaughter she was.)

But having Olivia around hasn’t just affected how the kids view the world, I realize. She’s made me more tolerant too. When Boo and I went to get her eyes checked (still waiting for the glasses, btw), spent quite some time in a very crowded waiting room. They were so busy that they didn’t just have chairs around the periphery of the room, but set up back-to-back in the middle too. Boo and I sat on chairs facing the door, and after we’d been there a few minutes, a woman and man entered. The man had DS. He was delighted to be there. He greeted the entire room with, “Hi everyone! I’m Steve!”

Maybe he’d seen Cheers once too often and expected to get “Steve!” back from the crowd in the room. What he got was people whowere suddenly a lot more interesting in their 6-month-old Time magazines. That was my first impulse too, to suddenly get really, really busy and try to avoid contact with this guy, who was weird. Who was different. But then I noticed Abby watching him with a big grin and I realized Steve is just like Olivia, only bigger. He’s not scary. So I looked up and smiled too.

A friendly face! He zeroed right in on me while his caregiver went to check him in. He came over and thrust out his hand, “Hi! I’m Steve!” I shook his hand, “Hi Steve!” He giggled, like he couldn’t quite believe the whole handshake thing had worked, then ran over to his friend.

Around the corner of seats, I could hear the girl with him trying to convince him to stay seated, which he clearly would not do. I heard, “Steve, Steve! Where are you …?” and up popped Steve beside me again. He put out his hand again, “Nice to meet you!” I shook his hand again. “Nice to meet you too Steve.” He giggled again and I laughed too.

Before Steve could return, the nurse called him in. I guess that is something you get for being different – they don’t make you wait in the waiting room long, ‘bothering’ the other patients.

I saw him one more time as he left and we finally went in, because he waved and yelled good-bye to me. I’m glad I resisted the impulse to bury myself in a magazine too, pretend nothing was going on. Steve brightened my day. I’m even more glad after having read Andrea’s post on differences over at a garden of nna mmoy, because I hope I managed send the message to Boo that difference isn’t to be shushed or ignored. I completely admit that I wouldn’t have thought to do it if it weren’t for Olivia, so I’d say mainstreaming has had a positive influence, at least on our family.

Read Full Post »

I just stumbled across George Will’s column in Newsweek. Never heard of the guy, but I read it thanks to the topic, which is prenatal screening and Down Syndrome. I suspect I wouldn’t much like Will, based on his line: “this era of the casual destruction of pre-born babies.” As someone who is strongly pro-choice, the term ‘pre-born’ raises flags. And yet, I can understand his distress over the abortion of children with Down Syndrome, or Trisomy 21.

I was 35 when I became prengnat with Boo, which automatically put me in the category of recommended screening. Everyone just assumed that, as I’d hit that magical number, I’d have an amnio to check for genetic abnormalities, Down Sydrome being the main one. But with Maya and Asher, I’d had pre-term contractions. They never actually turned into pre-term labour, thankfully, but my doctor and subsequently midwife, told me I had an ‘irritable uterus’. (Made sense really – the rest of me was damn irritable during pregnancy, why not my uterus as well?)

What no one could tell me was if my irritable uterus was more likely to eject it’s contents if someone stuck a needle in there. As it is, amnios carry a small but not insignificant risk of miscarriage, which completely freaked me out. Boo was a surprise, but once she was on her way, I was desperate to keep her (I was completely, irriationally convinced she was a girl).

Prenatal screening is a stressful game. There are blood tests that can tell you your odds of a problem, but nothing absolute. And, to make it more fun for the already hormonal mom-to-be, the blood tests are often wrong. So you get the blood test, it indicates a possible problem and you have the choice of living with that extra stress until the child arrives, or going on to an amnio. The only absolute tests involve needles and an increased risk of miscarriage. Most people with a false positive (of problems), as far as I can tell, go on to an amnio that tells them everything is fine. All that stress for nothing, really. Some end up with the news of a problem and some end up miscarrying a perfectly healthy baby.

I was terrified of the tests. I’d done nothing in my previous pregnancies, electing for the head-in-sand approach to the whole issue, but suddenly, having reached the magic 35, it was assumed that I’d have the tests. If the blood test came back with a bad result, it was assumed I’d have an amnio. If that came back with a bad result, then what? Was it assumed I’d have an abortion?

I felt my babies really, really early. By about 14 weeks, I had little low flutters. I remember Boo’s clearly, as she liked to hang out in the lower right of my belly. I remember lying on my bed, feeling those tiny tickles and realizing that the part I didn’t get in this whole equation is that Down Syndrome is supposed to be worse than miscarriage. I realized that I didn’t care if the baby had DS. I could feel her. She was there, and that was where I wanted her to stay, no matter what.

I did some research into Down’s and a lot of research into what my odds really were, at my advanced age (which really wasn’t, statistically-speaking, that advanced after all). I decided that if I balanced all those odds out, it really wasn’t worth the risk. J agreed, thankfully, and we did no tests. That decision lifted a huge weight off my shoulders. I was convinced the baby was fine, even if she did have DS.

When Boo turned 2.5 and moved up to the preschool room at her marvellous daycare, which she attended twice a week, she soon began to talk about her friend Olivia. She loved Olivia. I heard lots about the two from the caregivers too, how close they were and how they fell over with exuberance when they hugged each other. It took me ages to actually meet this new friend, but finally one day, as I walked in to pick up Boo, I was greeted by a lovely little girl with jet black hair, bright red lips and snowy white skin. I swear, the first thing I thought when I saw this child was: it’s Snow White! The second thing I noticed was that she had DS. This was Boo’s best friend.

I feel as though Olivia is some sort of confirmation of the choice I made then, that even though Boo is completely healthy Olivia is proof that I made the right choice. I know that is crazy, but there it is.

I am too pro-choice to suggest those pre-natal tests aimed at detection genetic problems be disallowed, as some people are apparently suggesting. I also think that every woman, every family, has a right to decide for themselves what their family will look like, as much as they can. Only they know what they can cope with.

But I can also completely understand why people like Will and others who are related to people with DS are angry at the prenatal testing aimed right at detecting the syndrome, because it seems to come with the assumption that a diagnosis of DS means terminating the pregnancy.

I think the answer lies in education. Much of the time, it seems that prenatal screening is just presented to pregnant women as a given, without much discussion about what real information the results will provide and what her options are after that. The results come with assumptions too, and that also is not fair. It is only truly a choice when women know exactly what they are chosing.

Read Full Post »