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"Je suis très, très fier"
May 27, 2014 8:15 AM   Subscribe

Portrait of a Young Man with Down Syndrome. A father reflects on his son's search for employment.
posted by zarq (53 comments total) 35 users marked this as a favorite

 
My next door neighbors growing up were an elderly woman and her son, who had Down Syndrome. I would go over and play with him sometimes, because as far as I was concerned he was just a big kid who happened to be 40 years old. He spent almost all of his time chain-smoking on the porch and listening to police scanners, and I don't think he ever had a job. He died before his mom did. He was a really nice guy.

What is the history of people with Down Syndrome, I wonder? In pre-industrial times, what place did they have in society?
posted by showbiz_liz at 8:27 AM on May 27


he knew that dolphins are pinnipeds

False.
posted by Slinga at 8:31 AM on May 27 [3 favorites]


Great essay, thank you for linking to it. I was definitely tearing up by the end. Jamie sounds like an awesome dude. I hope that job in the aquarium is waiting for him.
posted by fight or flight at 8:36 AM on May 27 [2 favorites]


Just started reading the article; may have more meaningful things to say after I finish. But:

Nooooooo!! Michael Berube's kid is NOT 22. He can't be! He's the 14 year old who knows every Beatles song who I read about on Berube's old blog. There is NO WAY that he's 22. It's impossible. Totally nuts. Time can't actually be passing that fast, right?!
posted by You Can't Tip a Buick at 8:39 AM on May 27 [6 favorites]


In the early 1960's, the biggest summer event for us kids was the 4th of July fireworks at Fairview Hospital. I was too young to really understand that most of these kids and adults with Down Syndrome were warehoused here by their families. Many spent their entire lives at the facility. It's really nice to see families with Down Syndrome children attempt to make their lives a bit more rich.
posted by jgaiser at 8:40 AM on May 27


Many spent their entire lives at the facility. It's really nice to see families with Down Syndrome children attempt to make their lives a bit more rich.

I have visited a community in PA for many years now that is designed to provide adults with mental disabilities a place to live out a meaningful life--including work even for those with severe disability. It is a farm-based community. Parents pay tuition (to the extent they are able) to have their adult children live and work there. They are able to forge friendships with other members of the community (the other adults with mental disabilities and the volunteers who keep the place running), they live in farm houses scattered about the property, and they are able to walk wherever they need to go. It even includes more specialized elder care as these community members age and their needs change. The community operates a large garden with their own CSA, a raw dairy operation, a brick oven bakery, and weavery, and extensive grounds to maintain. The disabled adults are placed in these various work spaces where they work alongside the volunteers and more permanent members of the community who manage these spaces. It is an amazing place, but fairly expensive to run.
posted by Seymour Zamboni at 8:53 AM on May 27 [24 favorites]


My good friend's next door neighbors have an adult son with Down syndrome. He is probably in his forties by now. He works full time at the local Safeway, and has for at least fifteen years. They live in a duplex -- he rents the other half of the duplex, cooks his own meals, does his own laundry, etc. I think every month his dad or his older sister (who lives across the street) sits down with him and sorts through his bills with him and makes sure they all get paid, although last I chatted with him, autopay was making it a lot easier.

There is a lot of essential work that needs to be done that can easily be done by a person with cognitive or intellectual disabilities. My local YMCA has a lot of towels that need folding and a lot of exercise equipment that needs wiping down, for example.
posted by KathrynT at 8:54 AM on May 27 [2 favorites]


This article has been on my mind all weekend. My son is 2.5 years old, and has Down's Syndrome. He doesn't have any of the medical complications typically associated with trisomy 21, so he'll probably live a long life. Cognitively he seems to be doing very well, so he might be capable of holding a job. But what would he do?

I remember one nurse, who meant well, telling us right after he was born that she had an uncle who spent his days stuffing envelopes and using the little money he made to go to the movies. It was crushing to us.

We've since decided that it's too overwhelming to attempt to plan for every possibility. And too hard for us emotionally. So instead we plan a few months or a year ahead, always trying to make sure we're doing everything we need to prepare him for the future, but at the same time not thinking about it too much.
posted by beowulf573 at 8:55 AM on May 27 [43 favorites]


I spent most of my early adulthood working in supermarkets, retail and light manufacturing and I remember having more than a few Downs (and otherwise disabled) coworkers, I don't know whether this had to with any kind of special program or what, but it provided employment. I don't know whether this young man would find that kind of work fulfilling, though.
posted by jonmc at 8:56 AM on May 27


I did not add that he talks to himself because he is lonely.

Ouch. That sentence hit me like a hammer.
posted by Benny Andajetz at 8:57 AM on May 27 [14 favorites]


showbiz_liz: "What is the history of people with Down Syndrome, I wonder? In pre-industrial times, what place did they have in society?"

When I read up on this place to make this FPP, a few articles mentioned how some of the people in Geel historically were people with Down's and similar issues. It seems like those who survived infancy often engaged in unskilled labor of various sorts -- farm work, kitchen-scrubbing, that sort of thing.

Historically people with Down's died a lot earlier, though; Wikipedia on life expectancy increases in the 20th century: "This increase has been from 12 years in 1912, to 25 years in the 1980s, to 50 to 60 years in the developed world in the 2000s." I have a relative born in the 80s with a similar condition to Down's, with a similar life expectancy; when my grandparents bought their graves, they bought a spare so that if my relative dies young, he won't have to be buried alone. Because that's just the kind of thing you have to consider. (He is in his 20s and healthy and robust, but his life expectancy is still just middle-aged.)

beowulf573: "We've since decided that it's too overwhelming to attempt to plan for every possibility. And too hard for us emotionally. So instead we plan a few months or a year ahead, always trying to make sure we're doing everything we need to prepare him for the future, but at the same time not thinking about it too much."

If it helps, my relative is in college in a supportive program, in group housing for college students with Down's and related issues. He does a little part-time work, hangs out with his friends, plays video games, likes to read, watches popular TV shows and talks about them, and keeps up with all his relatives on Facebook (which is also pretty easy for his mother or other carers to moderate if he gets a little inappropriate). He likes to travel and is able to do in-country trips mostly independently (the airlines help him along like they do minor children, and then whoever he's visiting meets him at the airport). He's very happy; he's basically just a dude in his 20s doing all the things dudes in their 20s do.

There were a lot of years when this didn't seem like a possibility and the future was massively overwhelming. But, yeah, one step at a time is all you can do, and that worked out pretty well.
posted by Eyebrows McGee at 9:03 AM on May 27 [13 favorites]


[H]e said dejectedly, "Groceries, I guess."I'm not sure what I would have felt that day if I had known that he would have to settle for less than that.

I have been wondering about this. Both the Whole Foods and the Albertson's branch near me used to employ a lot of people with cognitive challenges and now there are almost none. The one worker with Down Syndrome that I still see around the Albertson's has been there forever. At Albertson's, it seemed to happen around the same time they put in self-checkout lanes so I'm assuming something changed financially/structurally and it wasn't that the employees weren't suited. This development bothers me because it did seem like a pretty satisfactory mainstream job.
posted by BibiRose at 9:06 AM on May 27


But what would he do?

Whatever he wants to do? Whatever he finds fun and rewarding? Let him figure out what he enjoys and has an aptitude and then see what he can achieve? We have athletes, actors, musicians, conductors, artists, college graduates, fashion designers, black belts, MMA fighters and more all with Down's. I think if he has loving parents who care and who will help him to achieve his goals he'll be able to do whatever he wants in life to make himself happy.
posted by Talez at 9:08 AM on May 27 [1 favorite]


Seymour Zamboni, can you post the name of that community. I would love to make a donation or support it in some way.
posted by letitrain at 9:23 AM on May 27 [1 favorite]


I should followup that we are aware of the possibilities today, compared to even a generation ago. And he hope they are even more available to him when he comes of age. But there is a difference between knowing something intellectually and the thoughts that creep into your head as you're drifting into sleep.

One of the biggest improvements over the past generation is early intervention. After he was born we immediately signed up for state services for physical and occupational therapy and have started speech and are planning for school next year. We know of another family with a son in his 30's who thought they were doing the best for him by just keeping at home. But as a result he is today barely verbal and has few self-care skills. Not just institutionalizing a child is a great first step, but it must be followed up with teaching them the necessary skills to get by.
posted by beowulf573 at 9:25 AM on May 27 [7 favorites]


Both the Whole Foods and the Albertson's branch near me used to employ a lot of people with cognitive challenges and now there are almost none.

Probably because there are fewer and fewer of them being born with the advent of fetal screening: "Between 60% to 90% of women who receive a prenatal Down syndrome diagnosis end the pregnancy." I wonder what effect that drop in population has on services for disabled folks like Jamie? (I don't know, just wondering....)
posted by resurrexit at 9:29 AM on May 27 [1 favorite]


Whatever he wants to do? Whatever he finds fun and rewarding? Let him figure out what he enjoys and has an aptitude and then see what he can achieve? We have athletes, actors, musicians, conductors, artists, college graduates, fashion designers, black belts, MMA fighters and more all with Down's. I think if he has loving parents who care and who will help him to achieve his goals he'll be able to do whatever he wants in life to make himself happy.

This comment breaks my heart, because it's not true. It's like a letter that's slipped across from a better universe, one where the primary constraints on what we do are our ambition, our desires, and the love and support of the people near to us. In reality the constraint on our lives is capital — what capital will allow us to do. Jamie is lucky, because his parents are relatively well-off professors and, barring disaster, he won't be starving on the street anytime soon. But if his parents didn't have money? No amount of love and care from them could keep Jamie, who I've been reading about since he was small and who is (if he's anything like how his dad represents him) brilliant and kind and just basically fantastic, from being completely fucked forever.

It's not love. It's not care. It's money. I get my back up about things like this, because if one is sloppy and forgets to note that love and care don't matter without resources, one runs the risk of thinking that parents without resources don't love and care for their children.
posted by You Can't Tip a Buick at 9:30 AM on May 27 [80 favorites]


Disability in the Workplace: Company Practices (PDF) is a 2010 whitepaper from International Labour Office. Unfortunately, it doesn't list much for Down Syndrome, but there are a number of companies who take into consideration disabilities.

For instance, Walgreens has developed distribution centers specifically for staff with a range of disabilities. Here's a video of the facility, and an interview with some of the staff. It's been a short while since I've watched it, and I'm not seeing anything about that facility supporting folks with Down Syndrome, but I could be wrong.
posted by filthy light thief at 9:31 AM on May 27


My youngest son has a wide range of issues to contend with (ADHD, Apraxia, Mild Intellectual Delay to name a few) and I keep catching myself worrying about where life will take him. My other son has no problems to speak of and I can't help but think that life will be easier for him and much hard on his brother.

It bugs me a lot that the youngest may not have the same opportunities and experiences that his brother will. On occasion I get selfish and wonder how long will the going be so tough for me and my spouse (at 9 years old he's draining and I can only imagine what it will be like as a teenager or older).

Then my wife, bless her, calms me down. It is what it is, she tells me, and he will no doubt end up being alright. It won't be easy but he does have a lot of positives working for him.
posted by smcniven at 9:34 AM on May 27 [1 favorite]


For MeFites with special needs children of various stripes, you might enjoy keeping up with plinth's Special Needs Parenting blog.
posted by jessamyn at 9:35 AM on May 27 [15 favorites]


My parents grew up with a young woman with Down Syndrome who was not given any opportunities, and ended up in a nursing home with her father until he died, and then stayed there until her death in her 50s. I'm very glad to read that there are folks out there like Jamie who are living fulfilling lives, imperfect as our system may be.
posted by roomthreeseventeen at 9:36 AM on May 27


plinth's blog has been a great comfort and source of hope for me the past two and half years. Go read it.
posted by beowulf573 at 9:42 AM on May 27 [1 favorite]


plinth's blog is AWESOME! Best of the web, for sure.
posted by ThePinkSuperhero at 9:45 AM on May 27


Seymour Zamboni, can you post the name of that community. I would love to make a donation or support it in some way.

Camphill-Kimberton PA.
posted by Seymour Zamboni at 9:47 AM on May 27 [7 favorites]


Given the levels of unemployment generally its not really surprising that people with Downs will never get "proper" jobs.

Comments like:

Whatever he wants to do? Whatever he finds fun and rewarding?

...should probably be "Whatever his parents can afford to subsidize him to do."
posted by mary8nne at 9:57 AM on May 27 [12 favorites]


The fundamental problem is not figuring out which jobs people with Downs Syndrome can do, its that those are inevitably also jobs that people without Downs syndrome could do and from a market perspective, it makes more sense to hire the "best candidate" for the position. And with unemployment as high as it is, they generally have a lot of options on who that person might be. So then you try to reduce the cost for the employee with special needs in order to make them more competitive and you end up with sheltered workshops that pay hardly anything and it's hard to tell whether they're just make-work projects or predatory businesses taking advantage.

It's a different sphere, but I see this with my uncle who has schizophrenia. He wants so very, very, very badly to work and contribute to the world and make a little money and feel like a regular person. But he's not really well enough to work anymore and even if he was, an ill-kempt senior citizen with a side-effect tremor is not going to be anyone's idea of a good hire. He does some volunteer work mostly playing cards with seniors who can't get around, but he just can't see that as the same as having a real job.

I don't know what the answer is for these things, but I suspect it's about teaching them (and possibly learning as a society as a whole) to value things other than paid work.
posted by jacquilynne at 10:06 AM on May 27 [7 favorites]


My favorite thing about this article actually, was the reflection on the sheltered workshop program. There are a wide range of feelings about them and as someone who is on the outside of that system looking in (for the moment) hearing the opinions of someone more involved as an actual user of such a system was useful. And one more reccomendation Count Us In: Growing Up with Down Syndrome has a good first-person look at that same sort of gradual awakening to the realities of living with Down Syndrome in the US.
posted by jessamyn at 10:13 AM on May 27 [2 favorites]


>Probably because there are fewer and fewer of them being born with the advent of fetal screening: "Between 60% to 90% of women who receive a prenatal Down syndrome diagnosis end the pregnancy."

My goodness, that is heartbreaking.
posted by BurntHombre at 10:13 AM on May 27 [1 favorite]


>"Between 60% to 90% of women who receive a prenatal Down syndrome diagnosis end the pregnancy."

My goodness, that is heartbreaking.

I must respectfully disagree.
posted by Mogur at 10:20 AM on May 27 [45 favorites]


That statistic is misleading. "Only 2-3% of all pregnant women choose CVS or amniocentesis, the current definitive tests for chromosomal abnormalities, including Down syndrome. When you plot out the number of women who we would expect (based upon population studies and maternal age) to be having a child with Down syndrome versus the number of babies who are born with Down syndrome every year, we can conclude that 50% of babies conceived with Down syndrome are aborted."
posted by nicebookrack at 10:41 AM on May 27 [1 favorite]


It's worth bearing in mind that the range of what those with Down syndrome are capable of is broader than most people expect. For some, it can result in very severe learning difficulties, and for others a lot more possibilities remain open. I obviously think it's great to get everyone as independent and enjoyable a life as they can manage, but I'd worry someone would come away from this and encounter someone who needs a lot more care and think they've been deprived of opportunities, when in fact the reverse may well be true.

In the (rare) case of mosaic Down syndrome, not all the cells of the body have the extra copy of chromosome 21, and the range of what the symptoms are, both in terms of learning difficulties if any and the outward physical characteristics are much more variable.

I'd warn against all sorts of inadvertent prejudices, not just those that prevent those with Down syndrome living the life they're capable of, but those from drawing conclusions from this article or from the few with the syndrome you might know and extending it too far.
posted by edd at 10:51 AM on May 27 [2 favorites]


My goodness, that is heartbreaking

Why? Children who are never born have no regrets, and parents who did not want a child did not have one. A positive good.
posted by tavella at 10:51 AM on May 27 [17 favorites]


nicebookrack, considering that the blogger seems to have a pro-life bias against abortion of fetuses with Down Syndrome, I'd take anything she says on the subject with a grain of salt.

Read the last paragraph (bold emphasis mine):
Ross Douthat, Bristol Palin and countless others are certainly right when they decry the number of babies with Down syndrome who are aborted every year as a result of prenatal testing. And Douthat offers a good and important analysis of the grave problems with human hubris in thinking that we should try to engineer human beings according to our ideals of achievement, mastery, and success. But the data demonstrates that many families are still choosing life for babies with Down syndrome. Providing accurate numbers when women with a prenatal diagnosis face the decision about whether to terminate might just save some lives.
She is trying to prove a point and her objectivity is suspect.

Rick Santorum used the same statistic when he was running for President. Politifact fact-checked him back then.:
A number of scientific studies have shown an abortion rate from 80 percent to 90 percent -- close to what Santorum said -- but all have been localized. Since there’s evidence that the decision to abort can vary by region, we think it’s an overstatement for Santorum to say that after prenatal diagnosis, "90 percent of Down syndrome children in America are aborted." There are no standardized, national numbers, so his use of the term "in America" is problematic. On balance, we rate his statement Half True.

posted by zarq at 10:52 AM on May 27 [1 favorite]


My longtime grocery store employed a young man with Down Syndrome as a bagger. He wasn't gregarious and had a pretty flat affect and I was never able to engage him when I ended up in his checkout line (and that made me sad).

But one day I was leaving the store with my groceries. I had just gotten to the automatic doors. He was coming in as I was going out. But right when he crossed the threshold, he raised his arms up over his head and sang "She's a lady/whoa whoa whoa/she's a lady" in his happiest, most enthusiastic Tom Jones, then went on his way.

It was pretty much the best thing ever, and it made me so happy. I smile now just remembering it.
posted by mudpuppie at 10:54 AM on May 27 [9 favorites]


One big myth regarding people with Down's Syndrome is that they are happy all the time. Trying saying that with a straight face when we take the TV remote away from my son. They have the same range of emotions as everyone else, for good and for bad.

My son is very happy, but my mother says that he has the same attitude that I had growing up. I expect environment and other non-Down's related genetic factors are more important when it comes to personality.

(Down vs Down's, grr. AP style guide say "Down Syndrome" but it's named after a person so I tend to want to use the possessive case.)
posted by beowulf573 at 11:02 AM on May 27 [4 favorites]


I didn't mean to perpetuate that myth, beowulf573, and I'm concerned now that it sounds like I view people with disabilities as a potential source of amusement. I didn't mean that at all -- just meant that I had never seen him act happy (and maybe he just hated his job), and that the spontaneous singing was reassuring in that way.
posted by mudpuppie at 11:09 AM on May 27 [1 favorite]


Both the Whole Foods and the Albertson's branch near me used to employ a lot of people with cognitive challenges and now there are almost none. The one worker with Down Syndrome that I still see around the Albertson's has been there forever. At Albertson's, it seemed to happen around the same time they put in self-checkout lanes so I'm assuming something changed financially/structurally and it wasn't that the employees weren't suited.

I noticed this when my city banned plastic bags. This seemed to be an excuse to let most of the baggers go (since apparently putting groceries in a plastic bag requires a different set of skills than putting them in a reusable bag.) There's still one young man with Down's that works at Whole Foods and he loves to talk about the Lakers so I always try to go to his register.

There may have been some kind of program in place at Albertson's because I remember this at my store, too.
posted by Room 641-A at 11:15 AM on May 27 [1 favorite]


Sorry, that was just a general comment and not mean as a rebuttal to anyone.
posted by beowulf573 at 11:19 AM on May 27


Boy does that ring true. I have a 23 year-old daughter who appears to closely match that young man's cognitive development/disability, though her issue is autism, rather than Down Syndrome. We have been through the whole "falling off the cliff" experience in the last 18 months as she aged out of support programs provided by the local school district. We were fortunate to get her into an adult day program run through the local park district, but that can run into serious $$$. Luckily she has SSI coverage to pick up most of that.

I can also sympathize with the frustration and disappointment regarding the difficulty of finding employment. My daughter sent out dozens of applications and even got a few interviews, but sadly no actual job. She became so despondent about it, that we pretty much gave up on it altogether to avoid the emotional ups and downs.
posted by hwestiii at 11:41 AM on May 27


In terms of programs helping kids with autism not "fall off the cliff," Sweetwater Spectrum is an interesting pilot community -- architecturally designed around the needs of people with autism (silent HVAC, floors and ceilings that minimize sound, etc.), with a garden where residents can help garden or work as a cashier at the farmstand, community areas for group activities, and a general environment of respect that fosters both independence and interdependence.

I think it's so important to look at these situations through the social model of disability and think about how we as a society tend to discard people with little ability to make money or contribute to the economy. I know that for schizophrenia, at least, people with schizophrenia who live in developing nations have historically had better prognoses than those living in developed areas, because they were (and, I hope, still are) more actively integrated into daily family and community life rather than being written off as economically unproductive.
posted by jaguar at 12:25 PM on May 27 [4 favorites]


My niece has Fragile X. She has cognitive issues, and finds it very difficult to hold a conversation. She will often parrot what was said, or when she answers a question or makes a comment, she will then become fixated on that comment or answer and repeat it. She is 25 and has a couple of years left in the Michigan special education system. After 27, she ages out. She has seizures and some other medical issues so it may not be possible for her to live on her own. But I am very aware that it is her father's white collar job in the automotive industry that allows her the very privileged life she currently has and always will have, as long as her parents are alive.
posted by Kokopuff at 12:28 PM on May 27


If anyone's feeling all give-y or just web surf-y, near me there's the Brookwood Community. I'd have never heard of it, but one of the businesses near me, a hat maker and retailer, moved their business entirely to the community.
posted by resurrexit at 12:35 PM on May 27


This: I remember one nurse, who meant well, telling us right after he was born that she had an uncle who spent his days stuffing envelopes and using the little money he made to go to the movies. It was crushing to us.

And: My daughter sent out dozens of applications and even got a few interviews, but sadly no actual job. She became so despondent about it, that we pretty much gave up on it altogether to avoid the emotional ups and downs.

What kind of strikes me is that in today's world, these things are kind of true of a lot of young people even without developmental disabilities of any variety. Which is not to be dismissive, it's obviously harder with disabilities, but the whole question of how to find something satisfying to do with your days is very close to universal. That also means some of the solutions are, too. A family friend has Down's and I know he works but he doesn't really talk about his job much and I gather it's not very exciting. On the other hand, he volunteers a lot, he has hobbies, he loves movies, he loves his dog, he has friends. And I... well, I'm intellectually functioning on a way higher level, by somebody's standards, and looking for an accounting job, and realizing that my life, too, is mostly going to be worthwhile because of volunteering, hobbies, media, pets, friends, lots of things that aren't my job, because heaven knows tax prep is not actually much more exciting than envelope-stuffing.

The lack of employment support for people with disabilities is absolutely a problem, but I think it's at least worth some optimism that a varied and worthwhile life is still accessible, if one doesn't indulge too much in the American tendency to reduce ourselves to what we do that pays us money. I kind of feel like the blogger here is doing a bit too much of that, although I sympathize.
posted by Sequence at 1:18 PM on May 27 [8 favorites]


Thanks for posting. I have a niece and a nephew with Down syndrome, both very dear to me, and I think and wonder a lot about how they'll arrange their lives as they get older. There's a lot of talk in the community about the exceptional cases -- what my sister calls "the Down syndrome rock stars" -- but I don't really know that much about what life is like for a 30 year old person with Down syndrome with average cognitive abilities.
posted by gerstle at 2:22 PM on May 27


That's a pretty hard article for me to read. Very gut-wrenching.
A lot of that comes in the wake of a number of maladaptive behaviors, we've been seeing in my daughter, Alice who (as jessamyn noted), has Down syndrome and I blog about when the spirit moves me.

A number of years ago, I attended the Massachusetts Down Syndrome Congress' annual convention with Mrs. Plinth and Alice. The keynote speaker was Greg Palmer, a gifted writer whose son Ned has Down syndrome. He wrote a book about the process of transitioning Ned out of public school called Adventures In the Mainstream, which covers a lot of the same topics, but in long form. Greg announced at the keynote that he had donated a copy to every public library in Massachusetts (which is around 1700) - classy. It's a great book.

I try very hard to try to figure out how to educate my daughter so that she will be independent when she grows up. Some days, it's so very hard to see that. Today, I can give her a shopping list and she can follow the list and get the items. We have very few times when she does poorly, but today (and put emphasis on that 'today'), I have a hard time imagining her planning a menu, writing a list, traveling to the store, getting the items and paying for them without outside assistance. And that is crushing to me. It's emotionally hard to take this as anything but abject failure when, intellectually, what I see that she can do is anything but failure.

I have no idea what she might have as a job or career. I mean, if you asked her she would probably say ballerina or princess, but I can tell you that in spite of her zeal the former is out and because of the typical hereditary nature of the latter rules it out too. In addition to Down syndrome, her stroke is going to put manual labor off the table. It's hard when two days out of five, she calls me upstairs to help her put on her training bra (pro-tip: even though she doesn't really *need* one, her fashion sense/build makes it necessary; wearing one makes her feel more grown-up and helps her self-esteem). How can she stuff envelopes (which will be a largely obsolete job anyway) or pack groceries? Whatever job she has, it likely should be social because she absolutely loves people.

Mrs. Plinth and I have been trying to plan for a future we can't see. We are in a house now where we can convert one floor into an efficiency if we have to either for her or for a live-in caretaker. Maybe she'll want to live in a group home. I don't see her living alone.

Funny story - I work with a man who used to work at a group home and he told me about a man with Down syndrome who really liked beer and would routinely go into a bar an order a beer and while it was being pulled, put a single on the bar and look at the bartender confused when the beer arrived. They assumed (incorrectly - since he had a bank account and knew how to manage his funds) that was all he knew and would blindly accept the money. Think about it: he had figured out how to leverage society's ignorance into dollar drafts any day of the week.

But like I said, the past month has been pretty rough. I'm training again to run the Falmouth Road Race for the MDSC and one of my main motivations is to help support the group that will help Alice (and us and countless others) now and through her life. My son asserted in all honesty that I was going to win, which is both wonderfully generous and flipping hilarious considering the various burdens that age have dealt me, but every dad is a superhero in their children's eyes irrespective of reality.

Early Intervention is an absolute godsend. It made a huge difference for Alice and the people in her life. Here's the real beauty of EI: it's a numbers game. Some very well-done studies found that if you concentrate necessary therapies (Physical, Occupational, Speech, etc.) in the first 3 years of a child's life, it will cost the state less when that infant becomes an adult. This is a powerful, powerful thing, not just on the individual level. Down syndrome is the most common genetic defect in live births. 1/500. That means that, in our enlightened modern view (slight irony as Langdon Down had this figured out too), if we treat people with Down syndrome well and educate them, they tend to live long, healthy, happy, productive lives. The problem I see is that without the level of demand (prenatal screening), the quality of EI will diminish (reduced funding) as will programs for adults (jobs, job coaches, group homes). Will we see a return to institutionalization in my daughter's lifetime? I hope not. This is truly a golden age for Down syndrome when you have people like Libby Kumin who has dedicated her entire career to studying speech/language pathology in people with Down syndrome. Or David Koppenhaver who has spent his career studying how to best teach teachers how to teach literacy to kids with Down syndrome.

Thanks jessamyn, ThePinkSuperhero and beowulf573 for the kind words. I wish I knew what I was doing or at least knew that what I was doing is the right thing.
posted by plinth at 3:29 PM on May 27 [29 favorites]


For what it's worth, I asked Alice what she wants to be when she grows up. She said "a BEAR!", but she was just reading a little thing about bears. After cutting through that, she said "little mermaid" and "make costumes" but I think she's perseverating about Hallowe'en right now.
posted by plinth at 3:49 PM on May 27 [2 favorites]


plinth: "I wish I knew what I was doing or at least knew that what I was doing is the right thing."

I spent some time reading your blog between meetings this afternoon. Wow. It's truly excellent. Informative, passionate, educational, interesting. You're teaching us what a small corner of life is like with your daughter and family, I thank you for allowing us to be a part of that.

As for knowing what you're doing....
I made it a goal early on that no matter how stern I might have to be, I would make sure that my kids know with no ambiguity that they are loved and that we would take care of them.

Your love for your kids and your attempts to make sure they are safe and their futures are planned for, shines through.
posted by zarq at 3:58 PM on May 27 [5 favorites]


The issue of job placement for people with disabilities is huge right now. There's an initiative called Employment First that is being supported by the US Department of Labor and is fueled by a number of lawsuits. The issue of sheltered workshop and enclave employment is big dividing factor.

Some more links

I am a social worker in the developmental disabilities field. I want to share more of my personal reflections about disabilties and employment. I typed out a long comment and realized that I can't not contradict myself when trying to express how I feel about it. Pretty much, take all of the comments above mine, mix them up together, and that's how I feel about this issue too. Lots of cognitive dissonance.
posted by dchrssyr at 3:29 PM on May 28 [2 favorites]


I could tell that he was starting to think, after about 10 minutes, is this my group? Is this the category to which I belong?

Oh my, that got me.
posted by The corpse in the library at 4:27 PM on May 28


What a great article, thank you for sharing. I also work with folks with developmental disabilities---this has been my line of work for over 20 years now, and I have worked in a variety of settings from a summer camp, to special ed, in a group home, as a caseworker, and now as an administrator for my own state's equivalent of the agency that runs the type of Home and Community Based Waiver program mentioned in the article. I am right now prepping for my meeting tomorrow about our Employment First (mentioned by dchrssyr above) Strategic Plan. I also have a multitude of thoughts and feelings about the issue overall that I don't really know how to get in to a comment, but overall it's frustrating that we can't do a better job of connecting people to meaningful employment-- people who want it, who have a good work ethic, who have trained at various part time jobs and done well, and who have a crapton of family support--even for those folks it is this hard, and a process that seems to chip away at self-esteem and motivation rather than build on it. Frustrating.

The team I supervise does all of the assessments in our state--different ones than the ICAP and CBWA mentioned in the article, but in a similar vein. Wow, that was a great description of what a toll those can take on individuals and their families. One thing we are working on is how we can improve the assessment experience for folks/families so that it is not the kick in the gut it can become. Jamie’s caseworker and the other MH/ID person left the room to tabulate the results and render an assessment of Jamie’s eligibility for "competitive employment" (paid work). Jamie curled into himself on his chair. I had never seen him like this; even when he was sad about his brother or his hanging-out skills, he was always feisty. Now he just seemed defeated. Just wow. I'll be sharing this with my team.

Plinth, great blog and Alice seems like a great kid. The parent perspective is so important, such a good thing to keep going back to for those of us who have become somewhat buried in the government bureaucracies that run these programs!
posted by freejinn at 7:26 PM on May 28 [3 favorites]


Mogur: ">"Between 60% to 90% of women who receive a prenatal Down syndrome diagnosis end the pregnancy."

My goodness, that is heartbreaking.

I must respectfully disagree
"

Your disagreement implies that those unborn children, and the ones like them that were brought to term and live among us now, were worthless (or worse) and we are better off without them, and that is an extremely unkind attitude.

I am pro-choice, but the prevalent attitude in Metafilter that unborn children are disposable is very discouraging.
posted by I am the Walrus at 8:20 AM on May 29 [1 favorite]


I am also pro-abortion rights, but I often wonder if the already uphill battle for resources for special needs children is made worse by the idea that-- given access to abortion-- such children should not be born in the first place. Pediatrician Perri Klass once wrote that given her tendency to nearsightedness, obesity and some other stuff, genetic testing might mean someday she won't be born. IQ as a determiner? The difference between an average person and a person with Down Syndome, is that really enough to justify aborting that child? I don't think that is a slam dunk at all.
posted by BibiRose at 8:42 AM on May 29 [1 favorite]


I have yet to read the article, but I would like ot encourage people to read Michael Bérubé's blog posts. I only read a few he posted at Crooked Timber, but they really made me think.
posted by anzen-dai-ichi at 2:31 PM on May 29


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