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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).

7348-4-orange_-_6

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.

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/

I Found a Monster Inside Me, And I Put Her to Work

18 Nov

What will they remember about their childhood?

Will they remember those happy, sunny days that didn’t end well, because Mommy could only hold it together so long, and then broke down at the very end, when we were almost at the finish line? Going to bed is supposed to be the peaceful, gentle end to days overflowing with activity. And usually it is.

But then there are some days – a few of them occurring lately – where the end is a crescendo of frustration, where tired Mommy, thin of patience, loses it. Why? Because I have already held it together and smoothed things over 535 times that day with a smile on my face. The time for smiles is over.

The girls are bickering, again. Our 4-year-old son with Down syndrome, in the early stages of potty training, has saved his daily “deposit” for his clean pull-up and fresh pajamas even though we just sat him on the potty, where he happily read for 15 minutes. I start to talk harshly, bark orders: “Put on your pants!” “Get in bed!” “Be quiet!” And so on. I hear a few sniffles, can feel the guilt creeping in. I apologize, give everyone sweet goodnight kisses, but I’m still furious, and I’m sure they know that. My husband comes in to see what is the matter because he hears me stomping around. I express my frustration with our son. “He’s not doing it on purpose,” he says. “Yes he is!” I retort, like a school child.

Something about having three children has brought out the worst in me. I cannot figure out if it’s our son’s special needs and stubbornness, the twins (he has a typically developing and equally stubborn sister) or just the combination of my hotheaded Italian genes and too many small kids at once.

ME, THEN: WITH ONE CHILD

© Shazeen Samad, 2005

 

With our first daughter, now 7, I felt like the proverbial good mom, or at least good enough. She had a nice routine and got to bed on time. I worked full time but weekends were ours. Our bond was – and is – incredibly strong and raising her was pleasant, especially once we got through the first year of sleepless nights. Both of us (toddler her and mommy me) had a few memorable temper tantrums where I thought the world was coming to an end, but for the most part, she did not need much discipline. When you told her something, she usually listened, and we were consistent about enforcing the rules of the house. Congratulations to us!

But we had to try for a sibling for our precious one. Instead, we got two – a blessing for sure. And now – wow!! Monster mommy best describes how I feel most days. Exhausted, haggard, yelling in anger, always trying to find a way to carve out space for myself, to shave some minutes off bedtime so I can enjoy a quiet house. I clung to my firstborn, but now it’s more like “Don’t let the door hit you on the way out!”

Don’t get me wrong; these adorable kids are my life, literally. My days are filled with wonderment and laughter. I also know all the “right” ways to discipline children and control myself, having read many books and been trained and counseled by the coterie of therapists that have been in and out of our lives since our son’s birth. But here’s a confession: sometimes I am just too tired to do the right thing.

I am the stay-at-home parent – a great privilege — and even if I hadn’t quit my job in New York because we had to relocate to another state, I would have been fired for taking too many days off. One or other of the twins was sick constantly the first two and a half years of life. There were hospital stays for pneumonia and asthma attacks. Our pharmacist knows all of us by first name because we were there so often to pick up medicines. We know practically every nurse at our busy pediatric practice. I still jump every time someone coughs because I dread the outcome. What I’m trying to say is, my nerves are fried! I have burnt the candle at both ends and now there is no more candle.

I’ve realized something important, though. I’m actually not the nice person I thought I was. Having been raised by strict Catholic parents, I had always prided myself at the very least on being a “good” person. Not in the sense of following every commandment, but of being well-mannered, kind, generous, moral and civic-minded. You know, the type of person who would whole-heartedly embrace my disabled child.

ME, NOW: WITH THREE KIDS

© Brett Wilde, 2007

Only it did not come to pass that way. These four years have been the most challenging of my life emotionally. Do you know what it’s like to feel that maybe you don’t truly love your own child? I do. It’s perhaps the worst feeling I have ever experienced, like a vast darkness that swallows everything inside you. I don’t feel that way now (most days), but the road to accepting him and identifying my own flawed parent-self has been a long, winding one. We are not yet finished walking this path, nor I imagine will we ever be.

But at least I have some vague sense that we know where we are going. My son and me, both of us as human as human can be. Something interesting about the genetic anomaly of Down syndrome is that it manifests as humanity, writ large. My child with Down syndrome has stumbled more often than danced, resisted more than complied, been misunderstood more often than comprehended, and failed more often than succeeded.

This same description applies perfectly to me, and maybe to you too. Only for us, the fault would be our own, while my son is blameless. But let me ask this: have you let the beauty that is also your human birthright overtake you the way my son has let it overtake him? He has laughed more heartily than he has cried, felt and spread joy a thousand times more than sadness, let curiosity rather than fear rule his day and greeted every person who has crossed his path with a hearty embrace.

So no, I am not a good person and don’t say that I am. I am not quiet, gentle, patient and wise. I am angry, stormy, impatient and impulsive – just like my son! But I’m also strong, feisty, smart and tough. I will fight tooth and nail for what my kids need most. I will be hard on them if I have to for their own good and the good of society. I will not raise entitled children who think the world revolves around them, but neither will I tolerate people who try to pigeonhole my son into expecting less from himself because he has Down syndrome. My girls will learn manners of course, but I hope what they learn most of all is confidence. I want them to push back at the world in ways I was unable to do when I was younger, because I thought being nice meant being meek.

So the next time you get angry with your kids over small things, remember to apologize for the anger (not the consequences). Then remind yourself that it sometimes takes an angry woman to raise strong children.