The lifespan of people with DS is lower, yes, however, it has gone way up lately due to medical advances. Last time a study was done, about 10 years ago, it was 49. And that’s just for those whose lifespans we know because they have died, so it’s likely going up even more. I think the biggest medical issues were early childhood ones that they tend to have, like heart trouble and childhoold leukemia. Because a childhood death results in a very short lifepan, of course, it skewed the numbers down. A child who survived those problems would have a lifespan longer than the average.
I remember when open-heart surgery was an emerging medical miracle. Now it’s routine. I know dozens of children with DS who have had it.
It depends, like so many things, but it’s usually very little extra time or work. What we find is that she’s going to have some extra problems to deal with that aren’t daily. People with DS can be very stubborn. She may pick a morning every couple weeks where she really doesn’t want to get out of bed and go to school, and it takes a while to convince her. That happens with my other kid too, of course, but less often. She is learning to be self-sufficient - tying her shoes, etc - just slower than a typical kid. Mostly she needs reminders of what she’s supposed to be doing so she doesn’t get distracted. Again, same with all kids, just more.
Is she aware that her mental capcity is different from other kids? If yes, does it bother her? if no, do you think it might in the future?
–background to this question – spoilered just because its long
[spoiler] I used to teach horseback riding to a girl who was born with some significant mental and physical delays. At 16, she was painfully aware that she wasn’t “normal.” If there was anything she could do that was NOT adapted and accomodated, she was thrilled. She just wanted to do things the “normal” way.
For example, one of the barn owner’s clients made an extra-tall set of mounting steps as a gift to the barn. This was very helpful to my student because her muscles to swing her leg over the horse weren’t great, and before the new mounting steps, her dad would help her get on from the regular height mounting steps. With the new steps, it was high enough for her to mount alone. Great, right? So I showed her the new steps and she immediately said – does everyone use them? not just me? they aren’t for me are they? Are they for everyone? And was very happy to hear they were NOT “special” for her. She continued to ask and confirm that they were for everyone’s use (“normal”) and not brought in specially to help her, for the rest of the lesson.
[/spoiler]
Separate question: do you send your daughter to a specialist summer camp at all (or a regular one?) We had some mainstreamed DS kids at my sleepaway camp, older girls in the 15-ish range. Also, I know there are summer camps for kids with particular disabilities as well.
Are you worried about how to handle menstruation, body odor, and other unpleasantries of puberty?
Once, a long time ago, I worked with kids with DS, until they could afford someone who actually had some training. So, not long, really, but I came away with an impression that I haven’t really examined or studied. Which is that most of the kids seemed extraordinarily cheerful, quick recovery from disappointment, seldom angry for long, etc.
What kind of planning are you doing for her care/support after you and your wife die?
A related question: are you planning to leave the bulk of your estate to your daughter with Down’s, to provide for her care? If so, how will you handle this issue with your other children? Do you expect your other children to assume the duty of her care after your deaths? If so, do they know this? How do they feel about it?
I know several families with kids with Down’s and spina bifida, and they have all chosen to leave the bulk of their money to their disabled children (in trust, as you point out, for SS reasons). They also all raised their able-bodied kids from a young age to know that they were expected to assume the care of their disabled siblings. Unsurprisingly, their AB kids (who are usually the ones I am friendly with) resent the hell out of this.
Also, for the people with Down’s I know, their quality of life took a sharp downturn after the deaths of their parents, due to lack of care from siblings and other family members. And/or lack of financial planning.
I think my parents sat my AB sibs down and explained what would happen once they were gone. I did live with a younger bro, and it didn’t end well, and we didn’t get along while we lived together. We’re MUCH closer/better brothers now.
Building on this, what have they said about her potential now that she’s 11? People with DS have a big range of cognitive ability, and I’ve known some that are only very mildly ID (if ID at all, in two cases) and others who are fall into the moderate range. Even those who are more impaired have jobs - as etv78 mentioned grocery stores like Shaws and Market Basket are especially committed to hiring people with DS, which is how I know several people with DS myself - so I’m sure she’ll be able to hold a job the way you speak about her, but do you suppose she’ll be able to live on her own/with a roommate instead of a group home after you’re gone?
How much younger is your other daughter? Has she expressed worry yet about what will happen to her sister when they’re grown yet?
Yes. There’s a slightly greater chance that when you have one, you’ll have another. I know a few families with multiple kids with DS.
I didn’t want another, simply because I wanted to experience a regular kid. But I figured that if we had another one, who else would be better prepared for it than us?
I don’t think he’s being belligerent, just expressing the opinion that the stereotype about people with DS all being cheerful is BS - you didn’t generalize to that degree but a lot of folks do. I agree with him. Not only was the biggest terror I ever worked with a little boy with DS, I now know that depression is common to those folks. And it’s a serious sort, with psychotic features, that doesn’t respond to anti-depressants, too. (shock therapy works well, though.) I can easily see someone who has dealt with someone who has serious depression getting irritated when everyone tells them at least their son/daughter/sibling must be such a happy person.
Had no idea it was some sort of stereotype. My experience was like thirty years ago or more, and I claim no expertise whatsoever. I am aware of sensitivity, and made an effort to underline that I only had an impression, and was curious. i generally don’t make any effort to be respectful, so perhaps I’m not any good at it. Sure tried.
I didn’t mean it to be hostile at all. It was meant to be funny. Sorry.
I meant that I heard the same thing from people, about how everyone with DS is always happy, and from personal experience I can tell you that it’s not true, i.e. she can be a complete monster sometimes.
She’s nowhere near depressed or psychotic, she’s just immature for her age. She acts like a baby sometimes. A big one.
And I’m not irritated much by the stereotype. It’s true sometimes. She’s really cheerful alot. She’s the life of the party. But yeah, sometimes people rely on the stereotype to brush off the idea that its not hard to deal with kids with DS sometimes. It is. I’m not trying to say it’s easy either. Overall she’s tougher to have than a regular kid.