How can I learn more about Down's Syndrome?

April 29, 2010 11:41 AM

My newborn niece has Down's Syndrome! Help me learn more about this.

Good books? Resources? Stories/experiences? She's got fantastic parents, four wonderful older siblings, grandparents nearby -- she will be very well loved and supported, in other words. But pretty much everything I know about Down's kids is from watching sitcoms. Help me learn all about this special girl!

posted by sportbucket to Science & Nature (13 answers total)

I can suggest that you read Michael Berube's blog in which he frequently posts about his son, Jamie. (The blog has a search function so you can find the posts about Jamie.)

He has also written a book called "Life As We Know It: A Father, a Family, and an Exceptional Child" about Jamie. I've not read the book, so I can't vouch for it, but if it is anything like the blog, it would be well worth reading.
posted by pasici at 11:58 AM on April 29, 2010

Mefi's own plinth has a blog that has many entries about having a child with Down Syndrome. Hopefully he'll stop by and say some words here.
posted by Stewriffic at 12:00 PM on April 29, 2010

One of the most brilliant ongoing stories I have read about an individual with Down's is by the Pioneer Woman, whose brother, Mike, has Down's. He is in his 40s now - so not exactly going to help you with the here and now but gives you an idea of what her life can be like far down the road. It's also exceptionally well written.
posted by Sophie1 at 12:01 PM on April 29, 2010

Here's another blog by a mom of a kid with Down Syndrome. It's a pretty standard mommy blog, which might be reassuring. Here's an old post with resources for expectant parents of babies with Down Syndrome.
posted by craichead at 12:07 PM on April 29, 2010

One of the most brilliant ongoing stories I have read about an individual with Down's is by the Pioneer Woman, whose brother, Mike, has Down's.
While Mike is developmentally delayed, he does not have Down's.
posted by emilyd22222 at 12:12 PM on April 29, 2010

Oops, my bad. Also Down Syndrome, not Down's.
posted by Sophie1 at 12:25 PM on April 29, 2010

Like all kids, she's going to be a unique case. Some kids with Down Syndrome function at a high level, some don't. My sister was in mostly mainstream education until 11 but then regressed some. In her early 20's she does pretty good. Gets herself ready, can make basic meals. Still lives at home and always will, which is a worry as my Mom ages. She has some friends who live by themselves, with a little assistance, but that's not really an option in her case.

Her early years weren't too different from those of other kids. She walked a little later, talked a little later and was harder for those who didn't spend a lot of time with her to understand. There were some tough moments, for the rest of the family, when she was around 5 or 6, the kids on our street that she'd grown up with didn't want to play with her any more. We, her siblings, were much older than her but tried to include her wherever possible, so I don't think she noticed that she'd been 'dropped' by her peers.
posted by IanMorr at 12:44 PM on April 29, 2010

Response by poster: Thanks everyone!

Is there a go-to book for an overview? Particularly the medical/psychological implications of Downs? I know there's a million books out there, just wondering if anyone has any suggestions for something particularly lucid/readable. Babies with Down Syndrome seems to be it, but if someone has another suggestion I'd love to hear it.

As for Down/Down's: I think at some point I read that either was acceptable. I must have decided on "Down's" since it's named after a guy named Down, and never given it another thought. But "Down's" appears to be more prevalent in UK, and I am not in the UK.
posted by sportbucket at 1:32 PM on April 29, 2010

I have a son with Down's, he's 4 now. Expect him to hit most if not all the milestones a little later than most children. The muscle tone will be weaker, this varies from child to child, some it's barely noticeable, some it's very apparent. We had social workers working with our child and there was one case where the child was confined to a wheelchair, but that's the exception. Our son, Nico, is a bout a year behind, he's considered mild to moderately developmentally challenged. He understands things very well, is happy child and can do almost everything others in his peer group can do, still struggles with potty training, but has severe difficulties speaking. He's going through speech therapy. Many Down's child will struggle with speech due to developmental blocks, but also the fine muscle control of the mouth and tongue. There are health problems with down's that are fairly common, but often not spoken of, such as, myopia, small ear canals, (tubing often being required), heart conditions (our son had heart surgery at 2), even things like reversed stomach! But really they are kids like any other, just kids a little longer. Our child is so happy, so content and so genial all the time. Never seen such a love for life in a kid. He's laughing, and singing and clapping. I remember my wife felt very guilty, feeling responsible because of her age, and she said, "But he'll be so sad, because he's different." And her mother actually worked with Down's children as a special ed teacher and she said, "They're the happiest children I've ever worked with, they're not sad!"
posted by ExitPursuedByBear at 1:57 PM on April 29, 2010 [1 favorite]

I recently finished reading Count Us In Growing Up With Down Syndrome (link goes to my review) and I recommend it for background reading. It's written by two college age men, with the assistance of their folks, and gives a sort of "this is how it looks from my eyes" look at growing up with Down Syndrome. The guys are aware of their own disabilities, do a lot of work in their communities, have very supportive families and have a lot to say that is worth reading. I thought it was a great book.
posted by jessamyn at 2:29 PM on April 29, 2010

Down Syndrome New Mama is a blog I was pointed to when a friend had a baby with DS; I don't know how good her information is but she has lots of links. I found her list of toys for young babies with Down syndrome to be useful.
posted by LobsterMitten at 3:02 PM on April 29, 2010

Expecting Adam
posted by availablelight at 3:19 PM on April 29, 2010 [1 favorite]

I worked as a special educator for several years, and many of my students had Down Syndrome. They were, as mentioned above, some of the happiest, friendliest kids I have ever had the pleasure to work with! Some of them did have health concerns such as heart problems, speech and eyesight problems, and problems with weight. The scope of the development varied A LOT between kids, but regardless of any of that, they were some of the most pleasant individuals I have ever met. :-)
posted by Happydaz at 6:32 PM on April 29, 2010 [1 favorite]