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Down Syndrome on TV: Conversations About “Born This Way”

12 Jan

By Vicki Vila

As parents, sometimes we want a peek into the future.

What kind of job will our children have? Who will they pick as their partner? Will they ever stop leaving piles of clothes in a trail on the floor?

We use our own life experiences to guide our children as best we can. But if you have a son with Down syndrome like I do yet never met anyone with that genetic makeup while growing up, the future can seem more mysterious.

People with Down syndrome are living longer, healthier lives than ever before, with more opportunities to be included in the wider community and pursue higher education. But there also exists a long and sad history during which parents were counseled to put their babies in institutions, and most did, so generations of people missed out on getting to know them.

At the same time, new prenatal blood tests have made it easier to predict early in a pregnancy if a fetus may have Down syndrome, though an invasive test must still confirm the diagnosis. Some worry these tests will push the abortion rates higher for Down syndrome pregnancies, though data on abortion does not yet include those tests.

With these facts in mind, I was quite happy for the chance to see people with Down syndrome featured on their own reality show – the A&E series “Born This Way.”

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Left to right: Elena, John, Cristina, Steven & Sean at the community center Leaps n Boundz with a support worker. (Photo Credit: Adam Taylor, A&E Network)

The show is set in Los Angeles and has aired on Tuesday evenings at 10 p.m. EST for the past six weeks. It finishes today, but has been renewed for a second season, which the network said indicates a broad appeal.

I’ve watched with a friend who also has a young son with Down syndrome and we enjoy seeing the seven young adults interact with each other and figure out their lives. Though I think most reality shows are exploitive and not worth watching, this is a very positive and likable show. It’s a project from Bunim/Murray Productions, which created the reality show format with the MTV franchise “The Real World.” This latest venture, though, is free of backstabbing and alcohol-fueled revelations. The cast members really support each other and when an issue arises, they argue but work it out.

They are fun to watch and represent different archetypes. Megan, 22, is very ambitious and thinks highly of herself. She is a public speaker and is starting her own clothing business called Megology. “Don’t limit this diva because I’m right here,” she says. Cristina, 25, is socially mature and has a longtime boyfriend she would like to marry. Sean, 21, is pegged as a ladies’ man on an eternal quest for a girlfriend. Rachel, 32, is a likeable everywoman with a job who loves R-rated movies and American Idol. John, 28, an aspiring rap artist, is the comedian of the group. When he cracked an egg on his forehead during cooking class, I saw glimmers of my son.

Elena, 28, is highly emotional and doesn’t like it when people mention Down syndrome. “I don’t know why God gave me that,” she says. I worried over whether producers were filming in such a way to highlight her anxiety. Elena was born in Japan and her mother said it brought great shame to the family and took her 20 years to accept her daughter’s diagnosis, so it is possible Elena has internalized that. Steven, 24, works at a baseball stadium and dispenses sage advice. When one cast member said Elena needed to be nicer and control her emotional outbursts, Steven said, “You want her to be perfect. I think the best thing for Elena is to be who she is, rather than something that she’s not.”

“Born This Way” has been hailed as groundbreaking in some corners, and criticized in others for portraying an overly rosy look at life for adults with Down syndrome.

David Perry, a critic of how disability is portrayed in the media and a writer I respect, says the show is “basically fine” but doesn’t go far enough to promote inclusion. Personally, I don’t think it’s going to change the world – that’s a long-term project – but it is a leap in the right direction, because the world by and large doesn’t have high expectations for those with Down syndrome and I think most people don’t realize how interesting and varied they can be.

This is not the first time Down syndrome has been on TV. But it’s the first time I can recall a full cast of people with intellectual disabilities on an American show. In 2009, an online show in the U.K. called “The Specials” won critical acclaim for its portrayal of a group of young adults with intellectual disabilities. In the United States, my generation grew up with “Life Goes On,” about a boy with Down syndrome and his family, starring Chris Burke. Today’s television landscape has a variety of talented adult actors with Down syndrome, including Lauren Potter of “Glee,” Jamie Brewer of “American Horror Story” and Luke Zimmerman from “The Secret Life of the American Teenager.”

One common criticism I’ve read about “Born This Way” is that it focuses too much on interviews with the parents, and this bothered me at first too. Beth Haller, a disability scholar who is a journalism professor and the director of the Communication Management master’s program at Towson University in Maryland, said she thinks the show is “an important and helpful addition to representations of people with disabilities on TV.” But she thinks the parents disrupt the narrative.

In “The Specials,” of which she is a big fan and wrote the show’s Wikipedia entry at its request, she said that parents, family members or personal attendants have very little screen time. “It felt more inclusive because one of the adults from the group home narrated each episode,” she said, and there was less of the sitting before the camera to reflect on things that happened.

“Nothing against the parents,” she said, “they all seem very nice, and they obviously care about their adult children.” But she would like to see the show more focused on the adults and their activities. “To me, when the parents have so much screen time, it shifts the focus of the show to be for parents of disabled people, rather than a more general audience.” With that said, she added, “I still appreciate the show for focusing on the lives of people with intellectual disabilities and will definitely keep watching.”

My friend and I have definitely enjoyed having this peek at some real people with Down syndrome on “Born This Way,” and I guess I’ve been less bothered by the parent interviews as time has passed. In the first episode, cast members gather with their families for dinner on a pretty outdoor patio. People banter comfortably and pass around delicious-looking platters.

My friend commented: “It’s just encouraging to see them walking around, talking with friends, having a good time at dinner, not throwing their food.” Or licking each other’s elbows, I interjected, referencing something my 7-year-old son thinks is hilarious to do to his sisters.

On a more serious note, watching adults with Down syndrome laugh and talk with their friends can seem like a big deal to some.

Parents of young kids have told me the show gives them hope they’ll be able to have a meaningful conversation with their child someday. You see, people with Trisomy 21 – the medical name for Down syndrome – are almost always delayed when it comes to communicating. As with many things, it’s a spectrum, with some children becoming quite chatty while others speak in short phrases or use a communication device or sign language, and these skills are constantly evolving.

Stacey Calcano, of New York City, has a preschooler with Down syndrome and said the cast should not be held up as the best way to be an adult with Down syndrome. She brought up a point that I’ve heard other parents echo and I think is valid. “It’s really bothering me that our community is presenting itself in a way that we need “proof” of what our kids “may” be able to do for peace of mind,” she said. “If our children grow up without the same abilities as the adults on the show, does that make them less valuable as human beings? No!”

I ask myself if I am falling into this trap, and maybe I am. I DO want my son to be well spoken, but I also think he’s already there at age 7. I enjoy him very much and think he’s hilarious, but the truth is people who don’t know him may have trouble understanding him. I’m okay with that; we’re working on it.

There is a broader truth at play, and I think it’s double-sided. On one side, the show is an indicator to a wider audience of how much has changed since routine institutionalization. On the other hand, I think people with Down syndrome will always struggle with some things, so it isn’t that the cast members have better skills than others, just different ones.

Megan still needs to learn to do laundry and grocery shopping. John’s mother says she doesn’t think he could ever live independently and is greatly relieved when her daughters reassure her he can live with one of them if need be. Some of the cast did not know how to ride a two-wheeled bike until they went to a camp to learn during filming. (Bike riding is also harder for people with Down syndrome because of low muscle tone and balance issues. I give credit to the show for having Steven explain this when talking about the camp.) Rachel, one of my favorite characters, does her own shopping and laundry and has a job in an office mailroom, but because of sensory issues has a fear of loud places and can’t handle crowds.

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Rachel, Sean, Cristina and Steven. (Photo Credit: Adam Taylor, A&E Network)

So what do adults with Down syndrome themselves think of the show?

I decided to ask some. I spoke via phone to Alex Bender, 22, who attends the TAP program at the University of Cincinnati for people with intellectual disabilities and is studying photography. She heard about the show from her Mom. She said Megan is her favorite cast member. “She’s awesome,” Ms. Bender said. Her mother, Gary Hughes Bender, who wrote a book about raising Alex, told me that Alex did not seem to like the parts of the show where cast members were all together at a community center because her life is more inclusive.

When I asked the younger Ms. Bender if there was anything she didn’t like about the show, she quickly replied: “I told my Mom I loved it. I didn’t like her keeping me up so late to watch it, but I loved the show.” She did see a few parallels between her life and Megan’s. Like Megan, Ms. Bender is close with her Mom, who is also a single mother. Ms. Bender said she loves her school and sees her future in Cincinnati. “But then there is my Mom,” she said jovially, “she wants me in her life.” Her mom lives in San Francisco.

Rion Holcombe, 22, attends the ClemsonLife program for people with intellectual disabilities and has a girlfriend. He became an Internet sensation in 2014 when a video of him opening his acceptance letter to the competitive program went viral. I did not speak with him directly, but his Mom told me he watched one episode of “Born This Way” and found it very entertaining. She said he gave her permission to pass along his thoughts. “He identified with the guys,” said Susan Holcombe, “guys he would definitely be friends with, but his favorite is John. Quite a character that John!”

She said they discussed some of the things in the show, like what would happen when she and his dad get too old to care for him. “One thing I know is that he cannot live on his own,” she said, “but he adapted quickly and happily to dorm life with his three roommates. He walks to class (a mile) and crosses traffic to walk to work three days a week, and takes a bus to the grocery store to shop. So he agreed that living in a smaller group home would be a possibility.” She said her son is really level headed with strong values. Whereas she finds the show insightful, to him it’s just entertaining. “He would rather be watching the Teen Disney shows,” she said.

I also spoke with the family of Jacob Gehringer, 20, a self-advocate from the Omaha area who carries around his own bio sheet to hand to community leaders. His mother, Denise Gehringer, told me that Jacob was fully included in both “place and curriculum” in high school and now is in his second year of vocational training in his school district.

Ms. Gehringer told me that her son has said “Thank you!” out loud many times when the cast makes comments on “Born This Way.” He especially gave his “Thank you!” she said, when two of the guys – I think it was Steven and Sean — were having drinks at the bar and talking about dating. Jacob was in agreement when Sean got advice from his friend to stop pursuing a cast member that already had a boyfriend. For this article, Ms. Gehringer asked her son directly about the show and forwarded me the questions and answers.

Q: Would you like to hang out with the gang on “Born This Way?”

A: I don’t know. I don’t know if we like the same things.

 

Q: What did you think when the gal got upset when she heard the words Down syndrome?

A: It hurts her feelings. I would not say it to her.

Follow Up Q: Does it hurt your feelings when you hear Down syndrome?

A: NO! Why would it hurt my feelings? I’m not the same feelings as her. (Under his breath) Stupid question.

 

Q: What do you think when the guys were talking about dating?

A: (Very reluctant to talk about this with his mom). I don’t know. That guy should respect boundaries.

 

Q: I thought I heard you commenting about the one guy getting to live in his own place. What did you think about that?

A: I want a house with a yard for my dog.

 

Q: Do you want to watch more of this show?

A: No. “Agent Carter” is coming back on.

 

“So there you have it,” said Ms. Gehringer. “Apparently he was much more unimpressed than I thought.”

I love the variety of responses I got, and I like that some other families whose young adults have Down syndrome I reached out to said their sons or daughters were too busy to watch the show. Others said their children weren’t aware of it.

One thing that struck me while reading parents’ opinions about the show on social media is those who said the cast is not representative of the average adult with Down syndrome because they are fairly independent with strong verbal skills.

Is there an “average” adult with Down syndrome though? I decided to ask someone from the National Down Syndrome Congress because they meet people from all over the country. Sue Joe, the communication director, said in an email: “There continues to be such a focus on what people with Down syndrome “can’t do” or “will never be able to do”, that we’ve found “Born This Way” to be very exciting in presenting what people with Down syndrome can do!”

“The reality is,” she said, “we meet people just like the cast at our convention each year. And we also meet individuals who use assistive technology to communicate or who need a caregiver nearby to get through each day. They all bring unique qualities into the world.” On that note, Sean’s mom, Sandra Assimotos McElwee, told me in an email that when the producers asked for feedback, she told them they should consider adding someone to the cast who is nonverbal.

Among people with Down syndrome, the level of independence isn’t the only thing that varies.

Ms. McElwee, who has written books and keeps a blog about her and her son’s experiences, told me that she and her husband always knew that Sean’s future depended on the supports they could access.

“I know now,” she said, “that we are fortunate to live in a state that provides those supports and services. I hope now as parents see what is possible, they can lobby their own states and school systems to support their children as well.”

She sent me a jaw-dropping list of programs that are entitlements in California for people with disabilities, which means there is no waiting list for them. Her list included things like respite, behavioral therapy and potty training for children, as well as adult support and independent living services. She said years ago, some “mothers from hell” who lived in Sacramento paved the way for this by riding the elevator every day with legislators at the Capitol and told them about their kids and what they needed in services. (Take notes people. Find your state legislators here.)

Compare that to North Carolina, where I live. Melinda Plue, the director of advocacy and chapter development for The Arc of North Carolina, said the state has “somewhere between ten and twelve THOUSAND people on a waiting list for what we call Innovations waiver services.” Waiver services are the menu of supports that make it possible for people with intellectual disabilities to work on specific goals within their home or community.

She said “the people highlighted in this show either have no need for these services, or it seems that they have already them in place.”

Ms. Plue has two children and also provides support to her brother-in-law with an intellectual disability (not Down syndrome) who lives next door, independently but with some of the aforementioned services. She has watched all the episodes to date and says her brother is not a fan of the whole “get away from family” thing that she feels the show promotes. “He prefers us handling lots of his business,” she said. “But those dreams — college, girlfriends, etc., those are his too.”

It is wonderful, she said, “to see that people with intellectual disabilities (and, for the purposes of this show, people who have Down syndrome) can and do lead very independent lives when the support system is in place to make this happen.  It’s great that parents are being portrayed as dream-makers and are finding success for their children.”

She would want to be careful that the show does not discourage other parents of children with disabilities. “There are many people watching the show who have limited financial means and much more challenging needs to support (physically, mentally, emotionally, behaviorally) and whose children have the same potential as the people on this show.”

“There are individuals with disabilities who find the world much less accommodating than these families in Los Angeles, either because their communities haven’t fully embraced their needs, or because the support systems are so different state to state.”

“Good or bad,” Ms. Plue said, “this show is bringing to the surface many issues for which organizations like mine work to change each day.”

Personally, I love all of the conversations this show has started. Ms. McElwee said she “knew the show would introduce the world to seven people with Down syndrome” and had “high hopes that it would be a game-changer for people with all disabilities,” but she didn’t know how exactly that would play out.

Some positive changes she’s learned of include a grocery store chain using a courtesy clerk with Down syndrome for an employee training video and a man who decided to hire two adults with disabilities after seeing Sean’s interview on the show. She has also been contacted by several general educators for advice on how to approach their school districts about including students with disabilities in their classrooms.

“Parents of children both with and without Down syndrome are watching the show together and having important discussions about acceptance, abortion, and making friends with people who are different than themselves,” Ms. McElwee said.

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Cristina and Megan. (Photo Credit: Adam Taylor, A&E Network)

“There’s a multitude of people, previously ignorant, who now are enlightened,” she said. “Television is the most powerful medium.”

I asked if she would be doing anything differently now regarding how she advises Sean because of his involvement in the show.

“The most powerful thing that has come from Sean watching himself on TV is his own awareness,” she said. “We told him that a “ladies man” meant a player. But he insisted it meant that he really liked ladies. He now knows we knew what we were talking about. We believe that learning by mistakes are the most powerful and long-lasting lessons, and we allow Sean to make mistakes, instead of saving him all of the time.”

There has been some pushback about how forward Sean is in his pursuit of a girlfriend. In episode four, he keeps telling Megan he likes her a lot even though she has a boyfriend, and then when he meets a young woman with Down syndrome at a convention, one of the first questions he asks is “Do you have a boyfriend?” This made me feel uncomfortable for that woman.

Ms. Plue of The Arc said she found it unsettling that Sean’s behavior toward women “is seen as almost cute.” (To be fair, Sean’s father does have a talk with him about how to treat young women he’d like to date and Ms. McElwee said they taught Sean to ask about boyfriends so he wouldn’t pursue someone already taken.) “If it wouldn’t be appropriate for a peer without a disability to say in public,” Ms. Plue said, “I believe there should be an active effort to redirect the behavior.”

As for Sean, I asked him what he liked about being on the show. “People know who I am now and they are very friendly,” he said. “It’s very fun and I like it when people recognize me.”

Had he gained any insights?

“Yes,” he said. “I don’t want to like other boys’ girlfriends anymore. But I still need a girlfriend.”

In the meantime, he’ll have some good friends by his side. His mom said the friendships depicted on the show are genuine. I say bravo to the cast of “Born This Way” for transcending reality show tropes. Their friendship is the most enjoyable thing about the show and I’m excited to watch tonight.

You can watch past episodes at the network’s website.

 

 

 

 

 

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My Connection to Disability — A Long, Thin Thread

8 Jul

This post is part of a summer blog hop that is the brainchild of Meriah Nichols. See other posts on the topic of Connection.

Until my son with Down syndrome was born about 6 years ago, I had no connection to disability in my life, or at least I didn’t think I did.

But if I scour the archives of memory, I see the little moments of connection that were threaded through my life. I hesitate to claim them as anything to do with me, because mostly I stood on the periphery.

No one in my family was disabled, but enough of my aunts, uncles and grandparents were sick or infirm that it made me scared of illness, hospital stays and nursing homes – things I associated with disability at the time, though I don’t now.

As a child, I was often sick. I remember missing school; even worse, I remember missing my one and only chance to go to the circus. We had to cancel at the very last minute because I was sick. Again.

I was born two months premature and had a host of allergies, now resolved. Every Wednesday, I got a shot in my arm that left a bruise. After a while I didn’t notice it, but to this day, the antiseptic smell of that doctor’s office and the antiseptic look of those wood paneled walls occupy a prominent space in my sensory memory, not at all tempered by the sweetness of the weekly lollipops.

When I was around 10, my mother took on the nearly fulltime job of caring for her elderly mother. My grandmother did not live with us, but it seemed my mother was constantly at her apartment, doing her shopping, helping her with daily tasks or making doctor’s appointments.  I got to help too, which I was glad to do. We’d go to the grocery store and I’d take my Nana’s list while my Mom shopped for us. That was fun for me.

But my mother seemed to get little in return for her efforts. My Nana, all of about 5’2’’, had a sharp wit and an unsparing eye that saw fault more easily than success. My mother never said in so many words that this caregiving was stressful, but I saw that it was. I dreaded the day I might have to become a caregiver for someone and vowed I would not let it consume me. (Little did I realize that her being a parent — my parent — was also likely all-consuming.)

In our neighborhood was a boy my age whose disability rendered him permanently childlike, both in stature and cognition. At 13, he looked like a 6-year-old. I don’t know if he had an official diagnosis. If he did, I never knew what it was. All I knew was that he had a sweet smile and very gentle eyes, magnified to twice their size behind stereotypically 1970’s style Coke-bottle glasses.

His mom would take him outside on their little row-house porch, just up the street from us. Everyone who passed by was a “friend,” who she gently encouraged to “Come on up and say hi to David.” I see now the steel beauty contained in this little act of hers, this determination that neither of them be alone. He was her only child.

I would often stop and say hi to David, which really meant sitting on her wrought iron chairs and having a glass of cold ice tea, quite good, while listening to her narrate the world for David, who never spoke. He would move back and forth from foot to foot and smile eagerly through the iron bars of the fence, making little noises when his Mom pointed out a squirrel or a cat, or a bumblebee. If his Dad happened to come home from work while I was there, it was like the heavens opened, and he’d wave his hands and squeal with excitement. Happiness.

Summer - Iced tea

Summer ice tea, © sashimisoda, 2014

Once I babysat for him, this boy exactly my age. I cut his sandwich into small pieces at lunch, played quietly with his toys alongside him, helped him sit on the potty and wipe afterward. The whole time we were together, he was calm. When his Mom came home, he behaved more defiantly, and seemed uneasy.

I always chalked that up to him somehow understanding the resentment I thought I saw lurking beneath the surface of her face, her mouth hard set in a line of displeasure. David never got any better, and I sensed that she took it hard. She would sometimes express the idea that it was hard, raising David, and yet her voice always resonated with a sing-song of joy, especially when talking to him.

So now looking back, again with the perspective of a parent whose children are often defiant and then some, I wonder if it wasn’t just him unloading his frustrations on Mommy (as all kids are wont to do), his sense of confusion over why she had gone and left him with this quite boring young teenager.

The only other child outside of “typical” that I encountered was another young charge that I took care of once a week when I was 16. He was about 7, and his father had recently died of cancer. Apparently, he wasn’t able to process this event and seemed to the untrained eye to be mentally disturbed.

He’d walk around the streets wearing a blanket as a cape and calling himself Jesus Christ, but not in a pretend way. He seemed convinced of it: he was God and as God, he’d surely find a way to bring his father back. Other children avoided him and just about everything he said or thought seemed, in a word, strange.

I can’t recall exactly what we did to pass the time when I took care of this young boy. Maybe some board games or pretend games? I really can’t say, all I can recall is the one time I had to put him to bed. I think I had to give him a bath, after which he absolutely refused to sleep in his own bed and so I had to try and get him to lie still in his Mom’s bed, an impossible task as he kept hopping up and down and I had nothing but words to talk him out of it. By the time his Mom got home, I was mentally and physically exhausted, but proud that at least he now seemed tired enough to sleep.

I was fascinated by him and had wanted so desperately to help him, thinking in my naiveté that I could, or should. After writing this, I decided to look him up on Facebook. If the adult male I found is not him, he’s doing an excellent approximation. I felt much relieved to see that his public profile shows him cavorting about in a variety of juvenile selfies, including one of him picking his nose. Ah, the resilience of the human spirit.

While still in high school, I got a fulltime summer job caring for an elderly woman with Alzheimer’s who lived with her daughter across the street from us. The woman, let’s call her Eleanor, was very gentle in nature and laughed easily.

She couldn’t walk without assistance, so I didn’t need to worry about her wandering away or hurting herself, because she spent all day sitting in her chair watching TV. I was there simply to keep her company and help her to the table when it was time for lunch. She couldn’t use the bathroom anymore, so I also had to change her Depends a few times. Though potty-training my own child sometimes filled me with exasperation and even disgust, this act of basic caregiving did not faze my teenage self.

Eleanor had many moments of lucidity, but more often she would ask when her husband or her son was coming. (They weren’t; her husband had died and her son lived far away and rarely visited.) We settled into a basic routine: she called me “You” if she needed anything, and I often read books while the TV played on, pausing to laugh with her at something silly. Oprah at 4 p.m. was a highlight for us both. We enjoyed the show, but we also knew that when it was over, her daughter would soon be coming through the door.

Row homes © injoongeum, via Flickr

I hope you, dear reader, haven’t come away with the wrong impression after reading these stories. I did not take these caretaking jobs because I was a kind person. I took them because I wanted the freedom that came with earning my own money, and these were the most readily available jobs outside of working at the mall, which I also did. Teenage girls were not always burnishing their resumes during breaks where I came from (but we all got into good colleges anyway). They were  finding ways to earn the spending money they needed to go dancing and buy the music, cute clothes and dangly earrings they read about in magazines. I had an internship, sure, but I also worked at the mall, sold Avon, and took care of people.

Yet I wonder: in these acts of caring, did I absorb some nuggets of truth about life? I doubt it. But I do think that sitting here, thinking about these stories, has made me realize that I’d been exposed to a wider variety of people than I thought. In theory, I don’t think of disability as a very big deal, though the concrete reality of it is much more complicated. But at least after all these years I’m not scared of being someone’s caretaker anymore. Being my son’s caregiver has been nothing like I worried it might be in the early days. It has not consumed me. We have a fun, active family life with our three kids – big sister, my son and his twin sister — that he is fully part of. The boogeyman of my childhood, chronic illness, did not come for us as I feared, though for the first few years of my twins’ lives, I thought he might because they were constantly sick.

If I’ve come to think anything specific about disability it is probably that we shouldn’t assume that someone who looks disabled needs our help. Ask first. More often than not, people with disabilities could mainly use a friend, a bit of conversation, a hand that reaches out and tells them that they are a part of the community too. Acceptance – not just tolerance, but an acceptance that they are who they are and it is no trouble for you to meet them on their terms.

I’d love to say that this way of thinking made it easier for my son with Down syndrome to have me as a parent, but I’m pretty sure it did not. No amount of caretaking could have prepared me for this most interesting and challenging of tasks, and most days I’m still not up to it. I don’t deserve his unconditional love and I’m barely quick enough to keep up with him.

I don’t really think of the term disabled as applying to my son, though I know it does; I am not in denial. Our boy is just our crazy little son, one of the funniest kids I’ve ever met, endlessly entertaining and frustrating in almost equal measure. If this gives me a connection to disability, then I guess I have one, but it doesn’t feel true. I don’t know any more about disability than I did at 16. But what I do have is a greater variety of stories to share. I hope you’ll visit again for more. In the meantime, check out the blog hop, where writers from across the world share stories about disability in their lives.

Down Syndrome: The Measure of Intelligence

20 Aug

What is considered intelligent varies with culture. For example, when asked to sort, the Kpelle people (a tribal ethnic group in Liberia and southern Guinea ) take a functional approach. A Kpelle participant stated “the knife goes with the orange because it cuts it.” When asked how a fool would sort, they sorted linguistically, putting the knife with other implements and the orange with other foods, which is the style considered intelligent in other cultures.

            Credit: Wikipedia: Glick (1975) reported in Resnick, L. (1976). The Nature of Intelligence. Hillsdale, New Jersey: Lawrence Erlbaum Associates. 

Here’s what this has to do with my 4-year-old son with Down syndrome:

Because of his genetic anomaly, Trisomy 21, which means possessing three copies of the 21st chromosome instead of two, my son and others like him have been deemed “intellectually disabled.” Or, a term that is thankfully falling out of favor even in medical circles, mentally retarded.

To come to this conclusion, researchers and psychologists have administered IQ tests that by and large are incapable of accurately determining the true abilities of people with Down syndrome. There are a number of reasons why they aren’t completely accurate, even though they may be the best tools available. But the most obvious is that they fail to take into account that people with Down syndrome cannot often easily express to others all that they know, either linguistically or through other means of communication. Their receptive language skills (the ability to receive and process information) are typically much stronger than their expressive language skills (their ability to give back).

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Copyright © jaya vijayan, via Flickr

So if my son were to be given a similar sorting test to the one described in the opening, and if he were, say, to put an Elmo doll next to an Elephant because those are two of his most favorite things in the world, a researcher might deduct points. You see, Elmo goes with Big Bird and the Big Elephant goes with the Baby Elephant and that’s all there is to it. And anyway my son would not be able to explain about Elmos and Elephants being his favorites unless you were to ask directly, to which he would reply an enthusiastic “YES!”

So who is the fool in this scenario? (In one case, it was me. For proof, please check out this short post of mine, an all-time favorite.)

What if people whose brains differ from the norm aren’t deficient in intelligence, but they simply have a different kind of intelligence? What if they are just part of a different “tribe,” that adapts its intelligence to the world it is functioning within?

Why is this lady asking fanciful questions that cannot be resolved? Well, I do at least have an answer for that one.

You see, I have been inspired by a fellow blogger, Rebecca, over at The Bates Motel. She hosted a very well received blog hop last month asking writers and readers what they would like to see revealed, medically and scientifically speaking, about Down syndrome during their child’s lifetime.

My answer is two-fold:

First, I would like to see our culture become more open-minded about traditional intelligence, and to realize that there is beauty in the variability of intelligence. And to stop correlating the quality of a person’s “output” to his understanding of the world and to his essential worth. Some of the most fascinating people I have met are non-verbal or struggle with communication. My son is quite a talker, but he still falls into the latter category.

Second, I would like to see the development of cognitive tests that more accurately measure the strengths of people with Down syndrome. There will probably always be a need for testing, at least if a person with Down syndrome is going to be part of the school system or receive therapies or other interventions. Our son is not yet 5, so we haven’t been subjected to school-based IQ testing, but I am not looking forward to that day. I hate skill-based tests of any kind, because mostly they show how my son does not “measure up.” Testers often talk to parents with sternly sad eyes, peering down at you with all of their knowledge to deliver the “news” that your child’s scores are below what is normal for his age.

More to the point, these tests – any tests — fail to take into account our son’s quite sophisticated sense of humor and incredible memory for stories and songs. But I do realize that tests can have value, especially if they can measure whether a certain teaching approach or therapy is working to help him learn or to improve his memory. Like any parent, I want all of my children to learn how wonderful and complex the world is, and to retain that knowledge so they can add to it as they grow.

My wish for better testing, at least, may become a reality in my son’s lifetime. And even if he doesn’t benefit much from it, just the thought that it is happening, that dedicated scientists even care about this, makes me feel euphoric.

Through the magic of Google, I discovered that the Down Syndrome Research Group at the University of Arizona  is working on this very thing: cutting edge cognitive assessments. The research began a few years ago, and it was big news at that time, so I’m not the first to write about it. But I was curious about the status of the tests, so I contacted Professor Jamie Edgin, a developmental psychologist and one of the group’s lead researchers, and she agreed to an interview.

Basically, her group is developing tests that will piece together a “cognitive profile” specifically for Down syndrome, assessing skills across various domains like receptive and expressive language, memory, executive function and flexible thinking.  This can help us, Dr. Edgin said, look at “the peaks and valleys of where skills lie.” In general, she said, the problem with an IQ score is that it represents “an average score that doesn’t mean much.” So if specific skills can be more accurately measured, I asked her, then what does this mean, say, to a parent whose child with Down syndrome is in the school system?

“The idea is that IQ provides only a score that qualifies a student for services,” Dr. Edgin said. ”it does not help plan those services. To do so, an assessment must be made of individual skills in language, reading, numerical skills and ‘learning’ skills such as the ability to form associations between information and problem solving. Assessments that cover this range of outcomes will help teachers to discover strengths and areas of weakness. For instance, while a number of children with Down syndrome may have difficulty with expressive language, their receptive skills or problem solving ability might be stronger. If a teacher knows this information, the teaching plan could capitalize on the child’s problem solving strengths. An overall IQ score can’t tell you that. “

Down's Syndrome - school

© Richard Bailey, via Flickr

Collectively called the Arizona Cognitive Test Battery, these tests are administered to people with Down syndrome ages 11 to adulthood using a touch screen. The tests probably won’t be ready to use in school systems for several years, said Dr. Edgin, and that is assuming an agreement could be reached with a major testing company that would distribute them in schools. Right now, the tests are still in their first year of a five-year review process.

But the beauty of these tests is that they can be administered to people who are non-verbal or have limited verbal skills. Right there, this is a major departure and improvement upon traditional intelligence tests for school-age children, which rely heavily on verbal feedback. Dr. Edgin told me that some children who are non-verbal have completed the tests on the Arizona Cognitive Test Battery. “We’ve been able to tell that they can make connections between information and can show us this using a touch-screen computer,” she said, and the researchers are able to get a better understanding of their abilities without needing language.

Dr. Edgin also told me that some colleagues at the UC Davis Mind Institute in Sacramento, led by the institute’s director, Dr. Leonard Abbeduto, are working concurrently on assessments for people with Down syndrome ages 6 to 23 that analyze the structure and syntax of language but are conversational in nature and based around the lives and interests of the person taking the test. For instance, the interviewer will ask about pets and hobbies and other situations that are fresh in mind, Dr. Edgin said.

Traditional language assessments, for instance, “are not very well suited to individuals with intellectual disabilities,” Dr. Edgin said, because they require the test-taker to process a lot of information in a very short period of time and repeat back what someone else has said, which can be hard for people with Down syndrome because of working memory constraints.  People with Down syndrome are very sensitive to failure, Dr. Edgin said, and they often get stressed out on more traditional language assessments because they really want to do well but they may not understand what is being asked and cannot produce language quickly.

Dr. Edgin also made sure to point out that “IQ is just one measure” of functioning and that there are lots of different things that people with Down syndrome can do very well. Many, she said, “end up doing functionally really well and being integrated into the community” despite a lower IQ.

This resonated with me; I have always worked hardest on functional skills with our son, like teaching him to dress himself and use the potty, rather than on academics. Of course, now that summer is winding down, I’m realizing we might need to hit the books a little harder!

The Arizona test battery from Dr. Edgin’s group is currently being used in clinical research to help scientists understand the effectiveness of drug therapies to improve cognition. For instance, she said, Roche has a drug currently in adult clinical trials that lessons neural inhibition in the brains of people with Down syndrome, and the Arizona Cognitive Test Battery is being used there. (Neural inhibition prevents neural activity and the formation of new connections.)

The test battery is also being used in the Down Syndrome Cognition Project, a multi-site investigation of the genetic basis for the high degree of variation in cognitive ability among people with Down syndrome and alongside neuroimaging studies by Dr. Julie Korenberg  at the University of Utah.

What is striking about all of this, Dr. Edgin said, is that even five years ago, “there were lots of people who were hesitant to start work with this group,” meaning Down syndrome research, “because they were worried that many of the cognitive tests wouldn’t generate good data.”

“What we’re really proud of,” Dr. Edgin said, “is that our Arizona Battery tests show that you can in fact do this type of research, that there are ways to do it,” and measure progress. “We spent a lot of time putting out that message,” Dr. Edgin said, ”and now new people are starting to work in this field.”

Research into Down syndrome is a really “up-and-coming” area now, Dr. Edgin said. When she was in graduate school she began by studying autism but was very surprised by the lack of inquiry into the cognitive psychology of Down syndrome, so she switched her focus. Now, she said, the research that she and her colleagues nationwide are doing regarding cognitive testing has the potential to answer important questions that can have an immediate impact on people’s lives.

In fact, she said, this has already happened: data from the Arizona Test Battery helped a testing company that supplies some of the Arizona Battery measures to refine its methods to be targeted more effectively for people with Trisomy 21 and other intellectual disabilities.

“You don’t always have that kind of immediate impact in science,” she said. “It’s very rewarding.” She said that in refining testing procedures, her group has learned – and taught other clinicians – not only how to use the tests more effectively, but how to best work with people who have Down syndrome. In Dr. Edgin’s lab, the battery of tests is also being used to measure patterns of cognitive performance in relation to factors like obstructive sleep apnea, which occurs in at least 50 percent of people with Down syndrome and as many as 100 percent according to the National Down Syndrome Society.

Dr. Edgin’s team is also applying for a grant from the National Institutes of Health to fund an Arizona Memory Assessment for Preschoolers™ that would allow teachers to assess short- and long-term memory of students with Down syndrome using real objects and manipulatives. This would be at least six or seven years away from being put into use if the grant is awarded.

Throughout our conversation I got the very distinct sense that here was a person who truly cared about the “subjects” of her tests. She took great care to explain how the new tests would play to the strengths of people with Down syndrome and give a broader, more nuanced picture of their abilities. I never got the sense that she thought people with Down syndrome were in need of fixing, which is what we parents often worry that science wants to do to our children: either “fix” them, or eliminate others like them from the future population.

So I felt comfortable asking her a few philosophical questions about the scope and purpose of drug research. (For instance, Research Down Syndrome, which is supporting the work that Dr. Edgin’s group is doing, also finances inquiry into drug therapies to improve cognition and memory.) Questions about this have nagged at me, and I know they have for others too. Of course no one has definitive answers to such heavy questions, but I wanted an insight into the thinking of this particular scientist, who is on the front lines.

Parents worry, I told her, that all of this research into medicine to alter the brain functioning of people with Down syndrome is somehow aimed at changing them, because we worry that society does not appreciate them for who they already are.

“I can understand why they would worry about that,” Dr. Edgin said, “but at the end of the day, the drugs are unlikely to change who people with Down syndrome are, but they are trying to give them a boost. While findings from animals models show dramatic changes, in humans it is less likely we will see a radical change.” She compares this to parents she knows whose children take medication for ADHD. They were terrified at first, but found that it has simply given them a little help at school. “That’s probably what we’ll see with Down syndrome,” she said. “The drugs will give them a boost and allow them to take better advantage of therapies and other treatments.”

It’s one of those things, she went on, “that if a drug were to go through and be marketed, parents would have the option to try it. It may give their kid a boost, it may not. But we’ll never know if that boost is available to some children unless we go through the trial.” For example, some parents give their children a cocktail of vitamins in the hopes it will improve memory or cognitive functioning, and anecdotal success is reported but these supplements have not undergone clinical trials. Going through the whole process to get a drug that is regulated by the FDA, she said, is much more effective than having lots of different supplements that are not tested for efficacy or unregulated.

As for me, I’m not sure I’d be jumping up and down at the chance to give my son a medicine that may provide a “brain boost.” As things stand right now, he’s doing great, but I’m aware that his need for complex thinking will only grow as he gets older. I imagine by the time such drugs are thoroughly tested and approved for use, my son will be a teenager or nearly so, and we’ll have a family discussion about it then. But all this is not about me, or him. It’s about the entire Down syndrome population, and some families may welcome this option, so I am heartened to know this is an avenue of research.

One other thing I was curious about: Is Dr. Edgin concerned that the recent development of prenatal tests to screen for Down syndrome at very early stages of pregnancy, thus potentially making it easier for women to choose abortion, will make the need for Down syndrome research obsolete?

“At the end of the day, it takes a while for these things to be implemented,” she said, meaning the rollout and usage of the new prenatal tests, the effects of which it is still too early to determine.

“It is possible that the population will be less,” she said, “but it’s not a rare disorder. And anyway, there are all the people now who have Down syndrome and we have an obligation to help them.”

“I can see why people might be concerned,” she said, “but from my perspective, it’s not an issue I’m worried about. There will be work to do and I’m going to do it.”

***

Thoroughly Modern Messy receives nothing in exchange for talking about Dr. Edgin’s work; this post is meant only to inform. Funding for the Arizona Cognitive Test Battery is provided by the Down Syndrome Research and Treatment Foundation, Research Down Syndrome, the Arizona Alzheimer’s Research Consortium and the Anna and John J. Sie Foundation. “But, we are seeking funds at the University of Arizona for our work, including the gift of a chaired professorship for me so I might be able to build our research and training program in Arizona and see many of these projects through to completion,“ Dr. Edgin said. For more information on what her group is working on, click here.

In the Film “Any Day Now,” A Loving Portrait of Down Syndrome

12 Aug

The film “Any Day Now,” starring Alan Cumming and Garret Dillahunt (known for his role as the father on “Raising Hope”), is billed as story about the struggles and bigotry gay couples have faced when trying to adopt a child.

The fictional story, set in 1979, is told very poignantly and the plot moves at a fast clip. Alan Cumming is absolutely thrilling to watch; his character’s vulnerability and inner strength come across with all the subtly of a sledgehammer, but he is very authentic and you immediately want to root for him. Oh, and his voice! If you’ve forgotten about his Tony-winning performance in the Broadway revival of Cabaret in the late 1990’s (or were too young to have heard about it), this is your chance to be reminded how lush and haunting his singing voice can be. The movie is worth watching for that alone. And it’s currently available on Netflix, which makes it easy to watch.

But for me, what truly stood out about the film was its straightforward portrayal of a young teenage boy with Down syndrome. The boy, Marco, is a neighbor of Rudy, the character played by Mr. Cumming. Rudy takes Marco under his wing after the boy’s junkie mother ends up in prison because he can’t bear the thought of the boy being placed in the foster care system. What I loved is that Rudy does so without a trace of pity for Marco’s “mental handicap,” as it is referred to in the film. He does this because he is a caring person who sees a child in need, and that’s all there is to it.

The film does not resort to treacle in talking about Marco. In fact, his Down syndrome is barely mentioned, and to me, this was its genius. To be fair, Marco’s character, thought central to the plot, is a supporting one; the story is really about his parents. After Rudy falls in love with Paul, a closeted gay lawyer played by Mr. Dillahunt, he enlists Paul’s help in becoming Marco’s temporary guardian and eventually the two petition the court to become his parents. Along the way, they create a loving and playful home for Marco.

Never is the idea expressed that they have taken on an extra “burden” by caring for someone with special needs. (Perhaps because fighting a culture and a court system that viewed gay couples as essentially perverted and corrupting of children was burden enough.) At one point, Rudy and Paul take Marco to the doctor for a checkup, probably his first in many years, and the doctor rattles off a list of the boy’s current and potential medical problems. Rudy quickly retorts, with annoyance, “And the good news is….?”  The doctor pauses; he seems compassionate. “Well, I just want to make sure that both of you understand that raising a child with Down syndrome is a major commitment.”

“We got it,” Rudy says confidently, smiling at Paul. “We signed up for the gig, didn’t we?” The doctor wasn’t finished. “He’s never going to go to college, or live on his own. What you see is what you get.” Rudy nods his head quietly and the film cuts to another scene.

This part rang so true as holding up yet another mirror to our culture. When new parents are told their baby has Down syndrome, whether prenatally or after the baby’s birth, often what they hear first is a list of real or potential health threats with a generous side dish of “won’ts.” This was true decades ago, and it’s sadly still true today much too often, even though people with Down syndrome are living into their 60’s and are included with their typical peers in all walks of life, from education to employment. More than 200 colleges now have programs for students with intellectual disabilities. It is becoming more common for people with Down syndrome to get married, live on their own and learn to drive.

Support groups, advocates and medical professionals have been working together to provide a more balanced picture of life with Down syndrome to new parents. Some local groups, including the one I rely on for support, the Down Syndrome Association of Greater Charlotte, have a Parents’ First Call program that connects expectant parents to families who can talk about what it’s like to raise a child with Down syndrome. Last year, Massachusetts joined just a few other states when it passed a law requiring that balanced information be provided along with prenatal diagnosis of Trisomy 21. The Lettercase booklet, Understanding a Down Syndrome Diagnosis (available free as an e-book), is considered the gold standard for such information by medical professionals nationally.

 ♦

The filmmakers of “Any Day Now” were clearly concerned with raising viewers’ ire about the treatment of gay parents, historically and currently, and that they did – I have never been so angry while watching a film in recent memory.  But they also succeeded in doing something they may not have intended: to portray a older child with Down syndrome as simply a child like any other, a person in his own right. This may not seem astounding, but loving portrayals of minor characters with disabilities are not plentiful in the movies; often they are made into objects of pity or viewed as inconsequential or as token members of the cast. In this movie, Marco was the thread that tied everything together —  a funny, fascinating, lonely person who inspired great love.

Marco has his favorite belongings — I teared up at the opening scene when I saw what he was lovingly carrying around, because my son, who is 5, loves something very similar. Marco brings joy to his adoptive parents, he tries hard at school and is beloved by his teacher. He is incredibly sad and confused when neglected by his mother, like any child would be, but he thrives in the care of Rudy and Paul, finding his true home with them.

Ultimately, this film is about happiness and love, how we must embrace them wherever and whenever they are found and look beyond merely superficial “differences” like sexual orientation and disability. But be warned: this is not always a happy film, so make sure you are ready to handle the emotions you will feel and keep a box of tissues handy.

A Picture of Down Syndrome, in So Many Words

12 May

And here I present to you the first ever “Messy” awards. These awards are neither exclusive nor comprehensive, so please, take no offense if your writing is not listed here. In fact, feel free to drop me a note about your own or someone else’s writing that you think should be included. Who the heck am I to be presumptuous enough to bestow awards? I’m nobody, of course (so don’t go puttin’ this award on your resume just yet). Nobody but somebody who likes to read, write and share what I learn in my travels. And I’ve read many more great posts and articles than I could ever have the time to list here. So I picked mostly things that turned personal experience into something universal, or writing that challenged conventional wisdom or tackled a complicated topic. I hope to make this a permanent page, as soon as I figure out how to do that ☺

Despite the title, the awards have nothing to do with being a mess, or otherwise crazy like yours truly. This is simply a directory of some of my favorite writing about disability, usually Down syndrome in particular. Listed here, in no particular order, is writing that sang, that resonated long after I read it. Though I have shared many of these on my Thoroughly Modern Messy fan page on Facebook over time, I want to make sure that everyone knows about these wonderful, insightful writers who have made my days more interesting and my life richer. Please pick a few that appeal to you and start reading. Don’t forget to spend some time on these writers’ blogs too. You won’t be disappointed!

BEST HISTORICAL OVERVIEW OF DOWN SYNDROME:

Jen Logan of DownWitDat. Hers was one of the first blogs I found after my son was born in 2008 – she has twins, like I do, where the boy has Down syndrome. It is still among my top favorites for her informative and utterly clear writing style, and she tackles the hard issues with grace and chutzpah. My favorite among her “History” series is this post about famous figures that had a relative with Ds.
http://downwitdat.blogspot.ca/2012/05/brief-history-of-down-syndrome-part-3.html

MOST THOROUGH EXPLANATION OF A CONTROVERSIAL ISSUE:

Matthew Hennessey at First Things. A hard-hitting look at how the issue of abortion is presented (or not presented) in competing information booklets given to new parents by various Down syndrome organizations.
http://www.firstthings.com/onthesquare/2012/11/the-down-syndrome-communityrsquos-abortion-rift

BEST PERSONAL ESSAY MASQUERADING AS A BOOK REVIEW:

Cristina Nehring at Slate. I did not read Andrew Solomon’s book about families with exceptional (a.k.a. “different”) children, “Far From the Tree: Parents, Children, and the Search for Identity.” But Ms. Nehring did, and wrote a comprehensive and searing review. I cannot say whether I agree or disagree with the review; what has stayed with me is her beautiful writing, a meditation on a life she did not expect yet has poetically embraced, raising with a daughter with Down syndrome who had a medically complicated first year of life.

http://www.slate.com/articles/double_x/doublex/2012/11/andrew_solomon_s_far_from_the_tree_parents_children_and_the_search_for_identity.html

BEST EXPLOSIONS OF MYTHS ABOUT DOWN SYNDROME:
Deanna Smith of Everything and Nothing From Essex. Sometimes you feel like you can’t win when you start reading what people have to say about having a kid with Trisomy 21. Some say life with Ds is a burden. Others insist our kids are precious angels sent directly from heaven to bless us all. Ms. Smith writes for the rest of us, who are content with a happy medium.
http://www.deannajsmith.com/2013/01/down-syndrome-promise-of-happiness-or.html

Anna Theurer of The Chronicles of Ellie Bellie Bear has an interesting perspective on Down syndrome — her little girl has Ds, and so does her Aunt Peggy, who was born over 50 years ago. Much has changed in that time, but some fallacies are eternal. The first (hilarious) photograph of Ms. Theurer’s daughter says it all!!
http://ellietheurer.blogspot.com/2012/07/blog-hop-down-syndrome-stereotypes.html

BEST WRITING ABOUT THE ETHAN SAYLOR CASE:
A young man in Maryland with Down syndrome ended up dead early this year after he refused to leave a movie theater after a showing and some off-duty police officers working as mall security intervened. No charges were filed in the case, and parents all over the country are outraged. Much has been written, thank goodness, and hopefully further investigations are on the horizon. I have read many heartfelt posts, and all of them are valuable. Here are a few that I found especially comprehensive or graceful, including some articles in the media:

Louise Kinross of Bloom, Parenting Kids with Disabilities:
http://bloom-parentingkidswithdisabilities.blogspot.com/2013/04/stigma-and-ethan-saylor.html
Lawrence Downes of The New York Times:
http://www.nytimes.com/2013/03/19/opinion/ethan-saylors-death-and-a-cry-for-down-syndrome-understanding.html?_r=0
Little Bird’s Dad (an anonymous blog):
http://littlebirdsdad.com/category/justice-for-ethan-saylor/
Meriah Nichols of With a Little Moxie:
http://www.withalittlemoxie.com/2013/03/he-deserved-to-die-he-had-the-temerity-to-be-born-with-down-syndrome.html
Mariah M. of Suncoastmomma:
http://suncoastmomma.blogspot.com/2013/03/standing-in-solidarity-tragic-death-of.html
Rachel Douglas of Words Hurt or Heal:
http://wordshurtorheal.blogspot.com/2013/03/robert-ethan-saylor-death-march.html
Maureen Rich Wallace at SheKnows:
http://www.sheknows.com/parenting/articles/989639/down-syndrome-advocates-call-for-justice-training
Stephanie Holland of Walkersvillemom (a great exploration of the question “Where do we go from here?”):
http://walkersvillemom.weebly.com/1/post/2013/04/frustration-sets-in-or-focusing-on-the-bigger-picture-and-lessons-from-the-sixties.html

FUNNIEST POST ON HOW TO MAKE YOUR NEXT IEP MEETING AWESOME:
Lexi Sweatpants Magnusson, in collaboration with her autism-mom friends, at Mostly True Stuff. Ms. Sweatpants (best middle name for a blogger, btw) has a child with autism and another child with Down syndrome.
http://www.mostlytruestuff.com/2012/11/ways-to-make-your-next-iep-awesome.html

BEST ARGUMENT FOR GIVING YOUR KID AN IPAD FOR THE CLASSROOM:
Not sure how kid farts are related to having an epiphany in your child’s Kindergarten classroom? Then read this post by Kari Wagner-Peck at A Typical Son:
http://atypicalson.com/2013/03/11/on-being-typical-and-not-so-typical/

BEST POST ON THE GIFTS A CHILD WITH DOWN SYNDROME BRINGS TO THE CLASSROOM:
Sheyla Hirshon at allbornin.org turns thinking about inclusion on its head. Inclusive education is not beneficial only for children with disabilities, it’s good for all.
http://allbornin.org/down-syndrome-today-more-then-ever-you-need-our-kids/

BEST CONVERSATION ABOUT ABLEISM:
Hosted by Lisa Morguess at Life As I Know It.
Ableism is defined as discrimination against the disabled or in favor of the able-bodied. I must admit this is not a topic I had thought much about until I started reading this. I’m not sure I’d characterize any mom I know, including myself, as an ableist, but maybe that’s the point – we need to be careful. Fascinating reading.
http://www.lisamorguess.com/2013/02/05/achievement-acceptance-and-ableism-link-up-and-lets-talk-about-it/

BEST PROOF THAT PEOPLE WITH DOWN SYNDROME REALLY DO HAVE A LOT TO SAY, JUST LIKE THE REST OF US:
This short article was incredibly sad and incredibly uplifting at the same time. After being trapped for decades by his inability to communicate, a man with Down syndrome learned to say (and paint) what had been on his mind all those years.
http://www.frasercoastchronicle.com.au/news/creativity-breaking-down-barriers-disability/1537249/

BEST PROOF THAT PEOPLE WITH DOWN SYNDROME CAN BE JERKS, JUST LIKE THE REST OF US:
Kate Conway of XOJane (eye-opening, wrenching, hilarious):
http://www.xojane.com/family/down-syndrome-with-alzheimers

BEST POETS OF DISABILITY:
I’m sure there are others, but these writers have absolutely knocked me to the ground with their unceasing eloquence on the topic of Down syndrome specifically or disability in general:

Amy Julia Becker of Thin Places, hosted by Patheos.com:
http://www.patheos.com/blogs/thinplaces/2013/03/on-world-down-syndrome-day-what-penny-has-given-me/

Jennifer Johannesen of Yes and No:
She is one of the most powerful writers – on any subject – that I have ever read. I devour every word she writes. I particularly like this post, in which she recounts how she dismantled the therapy team for her son, who was born with multiple severe disabilities and passed away at age 12. His last two years were spent simply enjoying life.
http://johannesen.ca/2012/09/dismantling-team-owen/

The columnist Buzz Bissinger at The Daily Beast:
http://www.thedailybeast.com/newsweek/2012/04/29/you-re-21-not-6.html

George Estreich, author of the memoir “The Shape of the Eye,” about raising his second daughter, who has Down syndrome. I have this book at home, and hope someday to write a full review. I love it. Mr. Estreich literally is a poet, as well as an essayist, and it shows in his writing. Here is an interview that gives you a good idea of his sensibility. Definitely check out his book, which recently came out in paperback.
http://www.literarymama.com/profiles/archives/2012/06/an-interview-with-george-estreich.html

MOST POWERFUL POST ON HOW GROWING UP WITH A DISABILITY YOURSELF INFORMS YOUR VIEW OF YOUR UNBORN CHILD:
Meriah Nichols, in a guest post for Patheos.com. I cannot say enough about how this post affected me. Her beautifully written story is unique and gives the reader just an inkling of the incredible strength this mother must posses. It is also a harsh but necessary reminder of how society sometimes treats those it deems “other.”
http://www.patheos.com/blogs/thinplaces/2013/01/i-regretted-my-amnio-by-meriah-nichols/

BEST LOVE STORY: Ok, I know there are many great love stories about couples with special needs, but this one is sooo well done, and by a major newspaper no less. You have to read it! Ellen McCarthy of The Washington Post:
http://www.washingtonpost.com/blogs/liveblog/wp/2013/02/07/when-bill-met-shelley-no-disability-could-keep-them-apart/

MOST LOVING STORY ABOUT FINDING OUT YOUR CHILD HAS DOWN SYNDROME:
I know there are many versions of this too – the “When did you first find out” story; this is a recent favorite. Like many of the families I know (ours included), Tara McCallan of The Happy Soul Project was given a diagnosis of Down syndrome after her daughter was born. She has a buoyant spirit that shows in her writing. Lovely pictures too.
http://www.happysoulproject.com/2012/12/life-is-beautiful-because-reid-layne-is.html#.UY-IVyuDQXw

BEST EXPLORATION OF THE IDEA THAT EMOTIONS ABOUT DISABILITY DON’T FIT EASILY INTO ONE BOX OR ANOTHER:
Ellen Painter Dollar at Patheos.com:
http://www.patheos.com/blogs/ellenpainterdollar/2013/03/taboo-stories-disability/

BEST REMINDER THAT YOUR CHILD’S LIFE IS HERS, NOT YOURS:
If you are the parent of a young child with Down syndrome, make sure you follow this mom’s inspiring blog. Gary Hughes Bender writes about her adult daughter with warmth and grace at The Ordinary Life of an Extraordinary Girl:
http://www.theextraordinarygirl.com/2012/12/186-miles-of-tears.html

BEST INSPIRATION, PERIOD:
Karen Gaffney has Down syndrome. She is also an accomplished distance swimmer, advocate and public speaker. She recently added Honorary Doctorate to her list, from the University of Portland.

Here’s the YouTube video:

And here’s a brief biography of her (click the link and scroll down to her name):
http://www.up.edu/commencement/print.aspx?cid=8305&pid=3144

And this story, about a high school student with Down syndrome being inducted into the National Honor Society
http://www.westhartfordnews.com/articles/2013/04/12/news/doc516871b7db27b594585708.txt?viewmode=fullstory

MY MOST-READ POST
I hope you won’t mind that I include a little plug for my own post about educating children with Down syndrome based on their strengths. This is my most popular post, and is often found by teachers, which feels extremely gratifying. I hope you will find something useful too.

https://modernmessy.wordpress.com/2012/02/19/playing-to-their-strengths-teaching-children-with-down-syndrome/

What Exactly Is Going on Here?

7 Apr

Many powerful and heartbreaking blog posts have been written in recent weeks about Robert Ethan Saylor, a young man with Down syndrome who died at the hands of the police in Maryland after he refused to leave a movie theater following a showing of Zero Dark Thirty.

Like a steady drumbeat growing ever louder, these posts from parent activists have served as poignant calls for justice. They call for awareness of the supreme tragedy of the case but also for action — many are pressing for an independent investigation into his death, which seems like it could have been prevented so many times along the way. After Mr. Saylor apparently resisted an attempt by one officer to remove him from the theater, two other offers joined in, and Mr. Saylor ended up wearing three sets of handcuffs and lying face down on the floor. He had trouble breathing and later died; his death was ruled a homicide, and the cause of death was asphyxiation. All this simply because his health aide had told him to stay in his seat after the showing while she went to get the car.

A grand jury in Frederick, Md., declined to indict the officers, who were working off-duty as mall security when they were called to assist with Mr. Saylor. According to a report from the State Attorney for Frederick County, Md., Down’s syndrome, obesity, and heart disease made him more susceptible to sudden death in stressful conditions which would compromise his breathing. It’s almost like they’re saying it’s his own fault for having some health conditions, and yet let’s parse that phrasing a bit further: “stressful conditions which would compromise his breathing.” I don’t know about you, but I don’t normally find myself just happening into situations that would compromise my breathing.

I don’t know what convinced the grand jury that charges against the officers were not warranted. Without having access to the testimony from the 17 witnesses mentioned in the state attorney’s report, it’s hard for me to see things through the jury’s eyes, but I know well there are at least two sides to every story. As the parent of a young boy with Down syndrome, I can see one side more clearly than the other — all I see is that a grave injustice occurred for no apparent reason, and I support calls for an independent investigation because I don’t know all the facts. I would also like to see a full journalistic airing of the story — The New York Times and The Washington Post have written a few great opinion pieces about the case, and the Post wrote a nice, news-oriented feature article with loving details about Mr. Saylor’s life, but a comprehensive investigative piece by a major news department is also warranted — any takers? Finally, daily action by little people with big hearts has the potential to tip the scales. That would be you and me. Tune into this Facebook page and website for updates about the case and to read more great blog postings like this one or this one. For one-stop shopping, check out this blog for simple, concrete suggestions about what you can do to help. If you have a blog, write a post. If you are on Facebook, share one of the links I’ve mentioned.

If you have neither, simply tell a friend about the case. Or sign this online petition. Above all, please please understand that people in the Down syndrome community are not here before you to ask for special treatment. On the contrary, we are asking that you treat our children, our loved ones, as you would like you and yours to be treated. As equals. As beings worthy of respect and dignity. Just because someone does not communicate the way that you do doesn’t mean they don’t understand, that they have no words. (In fact, Mr. Saylor had words — witnesses overheard him saying “I want my Mommy,” a primal call for help that went unheeded. His mother was on her way to him when he died, reports said.)

It does not mean that their wishes can be brushed aside because, hey, they probably won’t even remember anyway if they are mistreated. In another appalling example of how little people expect of those with Down syndrome, a young New Jersey couple ended up separated and humiliated after they sat in the wrong row (but the right seats) at a movie theater for a romantic night out. All because the people whose seats they had mistakenly taken could not be bothered to politely point out their mistake and had the theater staff called. The examples don’t end there. In at least two other documented cases in recent years, the police used a questionable amount of force in dealing with young men with Down syndrome.

I have said it before and I will say it again. People with an intellectual disability are not dumb. They simply learn and express things differently than others might expect. I didn’t quite understand that either before I had a son with Down syndrome. So I am trying to explain to you in words what I have been been processing with my heart, that disability does not mean flawed. That it often means different, but think for a minute and realize that we all are different. That people with Down syndrome and other genetic or medical conditions are special just as we all are special, and sometimes fragile. Sometimes we all need to be, as the saying goes, “handled with care.” Have you ever been pregnant, or had a limb in a cast, or lost your voice but still had to be out in public, or carried a heavy sick child in your arms — or two heavy sick twin babies in car seats? Have you ever been miserably ill but still had to soldier on, go to work, drive the car, run the errands? Have you ever been in a place where you did not speak the language and had an important question to ask? Have you been lost on a strange dark road and confused?

These are all relatively minor ways to be in need, but they have all happened to me, and millions of us. And in each of these cases, I needed to be treated differently — differently than I would normally be treated, as well as differently from others around me. I needed a seat, a door held open, things picked off the ground, a sympathetic ear, a pause, maybe many pauses, a helping hand. Understanding. That’s what I needed, and what I usually got. Mr. Saylor needed understanding too. And respect — lots of respect — many pauses, some common sense and a gentle heart or two. Now, what his grieving family needs is justice. Please do what you, in your small way, can to help. If you belong to a local or national Down syndrome association, ask them what they are doing in this regard and volunteer to help.

On World Down Syndrome Day, Three Truths

21 Mar

Today is World Down Syndrome Day – 3/21, representing the three copies of the 21st chromosome that define Trisomy 21. With a Little Moxie is hosting a bite-sized blog hop (thanks for getting me writing, Meriah!).  She suggested posting three truths – one fact, one fallacy and one photo – in the spirit of promoting understanding and inclusion. So here I go.

FACT: Understanding comes in small moments. Pay attention.

This is hard to describe in words, but I remember the first time I felt some clarity about what it was like to be my son. Not to be his mother, but to be him.

I watched him play in the backyard with his sisters two summers ago. He had recently become a sturdy, independent walker and was a few months away from turning 3. Our nature-loving girls were flitting around, grabbing grass, leaves, worms and whatnot, pulling pieces of branch from our trees and collecting them in sand buckets. Being his sisters of course, they have never excluded him from their games, but nor have they often made special effort to include him; he must fend for himself, which is just as it should be. He followed them around like a puppy, picking up things and dropping them again, tripping sometimes but regaining his balance. Often he fell forward, but stood right back up. He oohed and aahed, not saying words exactly but mimicking their cadence, imitating their pretend play. He craned his neck to see inside their buckets, always a step behind but yearning to be right where they were. Yearning to be right where they were. It hit me in a flash. Here was a small boy, gentle-souled, wanting only to be a kid, and totally succeeding without ever noticing all the walls that had to be knocked down along the way.

FALLACY: People with Down syndrome are not smart.

Though they may not be intellectuals in the academic sense and often their skills cannot be measured accurately on standardized tests, people with Down syndrome can accomplish great things. Because they are good visual learners, many children can read at or above grade level. Most attend regular schools and do everything their typical peers do. These days, more young people with Down syndrome are going to college, learning to drive and getting married. Among the most impressive gifts people with Down syndrome posses is a finely tuned emotional intelligence. It is one of their top strengths – yes, strengths. We assume that people with disabilities are flawed and our thoughts about them stop there.

Well, all of us are flawed. And all of us, including people who have Down syndrome, or people who are totally nonverbal or immobile, possess unique talents. One of my son’s talents is a cleverness about how to manipulate people. If you don’t believe me, try sitting near him with your iPad or smartphone and see how readily he chatters to you about his favorite things like Mickey Mouse or animals, sidling up to you and nearly sitting on your lap like he is in love. What he really wants is for you to let him play a game on your device – he loves people, but he loves electronic things most of all. And you will let him play this game, because isn’t he just the sweetest thing? (No, no he isn’t.)  Don’t ever treat a person with a cognitive disability – or anyone, really – like they are dumb. Chances are they understand more than you can ever imagine and posses a profound relationship to their world.

PHOTO: Schoolboy, 2012

School has been such a blessing for him and for us. We love it!

Schoolboy

At the top of this post, I mentioned that World Down Syndrome Day is about understanding and inclusion. And it is. But after the recent tragic death of a young man with Down Syndrome at the hands of the police, it is also about action. Read more: a pitch perfect editorial from The New York Times and a very comprehensive article by Maureen Rich Wallace that explains it all.