Surprise, surprise: Carly's dad on where she is today

Everyone knows Carly Fleischmann, the Toronto teen with autism who was unreachable until she typed a message on a computer at age 10. Here her dad Arthur, author of Carly's Voice: Breaking Through Autism, talks about the challenges and joys of raising her, and where she is today.

BLOOM: Can you update us on how Carly is doing now?
 

Arthur Fleischmann: She’s enrolled at the University of Toronto, Victoria College, and she’s taking a couple of courses to start: English literature and a technology seminar. She’s living in residence on campus. She has two roommates in a three-bedroom suite. We ran an ad in the U of T job bank. 

One is a PhD student and the other is a mature third-year student. They get room and board and a small monthly stipend and one has to be home between 9 p.m. in the evening and 7 a.m. We had eight responses and Carly met with them and picked the two that best matched with her personality. She has daytime support from two people on two shifts. So far she’s doing great. She’s really thriving. She’s signed up for the school newspaper and student council and has a one-on-one relationship with the dean.

This is completely out of anything we would have expected for her. We never would have expected her to go on to school of any sort given her early prognosis and in in her later years, we didn’t expect she would get here so quickly. We didn’t know she would be able to handle the stress and changes of university.

BLOOM: As a dad, what were the greatest challenges when Carly was younger?

Arthur Fleischman: Initially it was just basic: managing life. Carly didn’t sleep and she didn’t stop moving and her behavioural issues were the main thing. We were exhausted and getting through the day was the biggest challenge, to be honest. And then we were dealing with the emotional fallout of not really knowing what life would hold for her and feeling there was no sense of hope.

BLOOM: You’re very candid in your book about the emotional and physical exhaustion. How did you manage those sleepless nights given you had to head up a successful ad agency the next day?

Arthur Fleischmann: I was younger and had a lot of energy. I was functioning on two to three hours of sleep at most and I don’t think I could do it today. It was a blurry period for me. I did take care of myself with nutrition and exercise and that really helps. Often people in these situations gain weight or drink too much or do things that make it worse, whereas I kept going to karate with my son and started at the gym.

BLOOM: It sounds like work was a good distraction for you.

Arthur Fleischmann: I had the night shift with Carly and the office during the day and I’m a good compartmentalizer. So as long as I could focus on those two things, and the other two kids were good, I was okay.

What I do for a living is so different than the stresses of being at home. I have a great environment at my office, a lot of positive energy, with fantastic partners and great clients. So while it’s a stressful job, it comes with the benefits of that positive energy and a sense of accomplishment.
  

Tammy was at home during the day doing the business of running Carly’s life, doing the invoices and scheduling of therapists and taking her to doctor’s appointments. Tammy is a real autism tiger. She jumped all over everything as a way of controlling it. I felt better if I could do a good job with Carly one-on-one at night, and then escape to work or workout and support the family and have a career.

BLOOM: How important was respite for you?

Arthur Fleischmann: It was critical. You come to a breaking point. You haven’t slept, you’re exhausted, your other kids need you. But it comes at a very high price tag because you feel very guilty.

Some of the places are good, but they’re not great. It’s not like sending your kid to the Ritz for the weekend. You can’t even kid yourself that it’s like summer camp. They tend to be worn-out group homes or more institutional facilities. But it’s 'good enough.' The other days of the year we were trying to do way better than ‘good enough’ for Carly, so if a few weekends a year she was getting good enough, that’s how it had to be.

BLOOM: What was it like when Carly started expressing herself in writing? The media made it look like her breakthrough was sudden.

Arthur Fleischmann: The American media did that. In reality it came after many, many years and after hours and hours of work. She had worked very hard with flip cards and communication books with a speech-language pathologist for eight years. And once Carly started writing, it was simplistic in the beginning: two to three word phrases and it might take an hour to produce. She felt the touch of the keyboard was uncomfortable so it was very hard. And it still is. Word-prediction has made it a little easier.

BLOOM: As Carly began to express yourself, did anything she wrote surprise you?

Arthur Fleischmann: The surprises also came in layers. First was her sense of humour. Psychologists and doctors will tell you that humour is indicative of a sense of intelligence and of levels of empathy. You have to understand things in non-‘black and white’ terms, which kids with autism usually lack. So Carly could see the different layers of humanity and had the intelligence.

And with that came her demonstration of empathy. When her speech therapist’s mother died, Carly wrote her an e-mail saying I’m sorry to hear your mother passed away. She was 11. And then she went on to wanting to do fundraising efforts for those less fortunate. I would have expected her to think of herself as most unfortunate. So to see her with that kind of perspective in life was really gratifying and surprising. And each year was like a layer of an onion coming off, with greater levels of intelligence and creativity underneath. Every year there was something new.

She’s done some really big things with social justice and social media initiatives that blow us away. And her desire to connect with celebrities and get her voice out there is self-driven. She had to figure out how to do it which takes remarkable savvy for anyone, much less someone who is allegedly impaired in some way.

BLOOM: Many of the moving parts of your book centre around your recognition that Carly couldn’t live with your family full-time at home. I think there’s a stigma in our culture about talking about residential care and that makes it difficult for families. What role did it play in your lives?

Arthur Fleischmann: At that point her behaviours were really challenging and the lack of sleep was starting to pile up. Having her out of the house for three nights a week brought us a sense of awkward normalcy. You could go to bed at 11 and be assured of sleeping until 6. You could go out and see friends. It comes with the big guilt price. It was terrible for her, but it probably saved us. You have to look at what is the alternative. This is a wonderful solution if it means a few days a week life isn’t perfect for your kid but the rest of the family unit can stay intact.

BLOOM: What would have happened had you not had the option of having Carly in residential care for part of the week?

Arthur Fleischmann: She would have ended up in a group home full-time, without a doubt. And she wouldn’t be writing. She wouldn’t be speaking. And she’d be heavily medicated. The biggest issue is the behavioural challenges and they would have run unchecked and been exacerbated. I think about the amount of human suffering she would have felt.

The best way to combat obsessive compulsive disorder is cognitive behaviour therapy and that requires communication. If she was in a home full-time and they were trying to fix things that they observed, they’d be fixing the wrong things. They might think she has aggression issues. Whereas we’ve learned that when Carly would slap herself there were two reasons: she had physical discomfort, like pins and needles, or she was trying to stop herself from doing something she knew she wasn’t supposed to do.

Even today most of our discussions are around helping her manage her compulsive behaviours. And having the feedback from her allowed us to better diagnose and treat it. She’s very active today in the development of strategies. She knows what her triggers are and can avoid them. For example, ‘I’d love to go to this event, but I know it sets off this behaviour, so I won’t.’ She’s using strategies such as breathing, or iPad schedule apps, that lower the anxiety and make the urges dissipate. She has a scheduling app that gives her tremendous structure, it helps her a lot, breaking her day down. She finds that helps manage anxiety and she knows what’s coming next.

BLOOM: What if Carly hadn’t had the breakthrough in communication that she did. Would you have been able to focus on your non-verbal connection and come to some form of acceptance?

Arthur Fleischmann: I guess you would just accept it as a given. If someone is sight impaired, you stop thinking they will ever see. But in a way you never really get over that because you go through these milestones with your other kids and she would still be there at home or in a group home.

BLOOM: How independent is Carly now?

Arthur Fleischmann: Carly has come to the acceptance that she’ll always need support of some sort, but she thinks of these people as assistants, instead of therapists. And she’s thinking of strategies for herself. For example, she’s said if boys come over and are hanging out in her room studying, she thinks the door should be left open, and she wants to make sure her roommates check in on her. She’s allowed to drink a bit but she doesn’t want to have more than one drink because she doesn’t feel the effects. Dating is a possibility.

BLOOM: What is Carly’s goal now?

Arthur Fleischmann: She wants to be a journalist. Her schooling may take eight years if she takes two classes per semester. Between consulting to organizations that support autism, and research and writing and blogging, she may actually have a career.

BLOOM: How have you changed as a result of having Carly in your life?

Arthur Fleischmann: I don’t know that I’m ready to be reflective yet. Some of the things would be obvious, like patience and thankfulness. I think I was a product of the '80s where greed was good. I think while we all like nice things, I’m happier with small wins now. And I can definitely look at people with a greater sense of empathy than I could before. On the flip side, I no longer accept the status quo as the only answer. If someone says ‘We can’t do that’ I know it’s just not true.

BLOOM: Was it challenging for you to be candid in your book knowing that Carly would read it

Arthur Fleischmann: Carly was the one who wanted the story out there. A couple of media stories were told and we could see how well they resonated with people around the world. People said her story brought them some insight and hope and help. We were approached to write the book. I said to Carly, “The only way to write this book is to tell the whole truth,” and Carly said “Write it.” Of course I ran passages by her and some things she wasn’t comfortable with were edited out.

BLOOM: Some adults with autism oppose the use of applied behavioural analysis (ABA) or other therapies they say are used to 'normalize' people with autism. How do you feel about this?

Arthur Fleischmann: I leave each to their own decisions, but as parents you know what’s best and you do whatever you can to make your kid as able to learn and communicate as they can. A lot of people writing these pieces are not severely autistic. They already have a basic quality of life that is far greater than the quality of life of a child who can’t speak and injures herself and destroys things. There’s no way that’s a good thing. No child feels good about scraping their skin till it bleeds or pulling out all of their hair. As parents, you do what you can to get to basic functioning and communication. 

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'My little doll is a fighter'

Sadia Qureshi rarely leaves her daughter Zoya’s bedside at Holland Bloorview, where a dip on an oxygen saturation monitor prompts her to suction secretions from her daughter’s tracheotomy. But every other night her husband Saqib sleeps at the hospital and Sadia goes home to her 11-year-old son Humza.

On one of these nights Sadia was cleaning Humza’s room when she inadvertently picked up and broke a toy Lego car.

“Mommy, what have you done?” her son cried out. “He’s never spoken to me that way before and he was very angry,” she remembers. “I told him to relax, that he could make another one. And he said ‘No Mommy. You have NO idea!’

“I asked him why he was so upset and he said: ‘Zoya made that and I’m not sure whether she will be able to come home to make it again.’”

Humza’s sister had made the Lego car when she was a healthy French immersion kindergarten student who loved making her family cards with rainbows, stars and hearts; adored animals and Michael Jackson; and dreamed of a puppy of her own. That was before a sudden onset of intractable seizures that have kept her hospitalized for almost a year—sometimes on life support.

“That poor boy,” Sadia says. “I knew he understood that Zoya’s situation was very critical, but we were not thinking about him. I started to cry and then he started to cry. I told him ‘I pray to God she will come back to play with her toys again. And if you want to talk about Zoya, always talk about her with me. If you want to cry, I will cry with you. We will cry together.’”

Sadia says she and her husband had freely shared their emotions about their daughter’s life-threatening illness, but she realized this openness needed to be extended to Zoya’s brother.

“It’s so hard for us to hold our fears, our emotions,” Sadia says. “So we cry when we want to cry. And we encourage ourselves. We tell ourselves ‘Whatever happened, happened. And we have to move forward. We have to be here for Zoya because no one else can take care of her like us.’”

Sadia describes how her previously healthy six-year-old daughter woke one morning a year ago, a couple of days after having a fever, unable to speak, her body jerking. “She had been perfectly fine,” Sadia says. “The night before when I put her to bed she said: ‘Okay Mommy. Goodnight. I will see you in the morning. I love you.”

Sadia called 911 and soon they were in the emergency room. “Her whole body was twisted and shaking and I was not able to stand,” Sadia says. “I closed my eyes and collapsed on the floor.”

Zoya’s seizures began to come more frequently, some lasting several minutes. “They had to keep increasing the medication they were giving as it became less effective,” Sadia says.

The doctors had no idea why Zoya was seizing, and despite running all kinds of tests, they couldn’t find an answer. Zoya was intubated because she wasn’t getting enough oxygen during seizures and a feeding tube was placed.

With no answers and no solutions, Sadia’s father-in-law, an anesthesiologist, suggested that they try Propofol, a commonly-used anesthetic in adults. “He told them: ‘When you want to stop seizing, you have to put the brain to sleep,’” Sadia says. “The doctors said they hadn’t used it in kids and that it could cause death. But my father-in-law said if we let her continue to seize, she’s going in that direction anyway. At least we can say we tried.”

The treatment was given and drastically reduced Zoya’s seizures. However, it didn't eliminate them. “We didn’t know whether she would make it out of this,” Sadia says. For two months the parents took turns sleeping upright in a chair in the neurology observation room, while nurses worked around them on four patients.

Zoya was moved to the complex-continuing care unit at Holland Bloorview with the goal of slowly weaning her from heavy seizure medications. “The doctors can’t say what her end condition will be because she’s on so much medication,” Sadia says. “Zoya is not able to speak, but can open her eyes and look around and can move her arms and legs. They can’t say whether her [current] condition is a result of the meds or of [brain] damage,” Sadia says.

Weaning from the seizure meds is a slow process with no timetable because withdrawal seizures are a side-effect and illness can retrigger the seizures.

Sadia says it helps her to be fully involved in Zoya’s care, which includes getting up every hour during the night to suction her. “It gives me a kind of satisfaction because I know I am doing my best. Zoya can feel me here and this is part of her therapy. I talk to her.”

She relies heavily on her family. Sadia’s retired father came to Toronto from Pakistan to help care for his grandson and “has been the biggest help. Babysitters are expensive and because I had to quit my job, we couldn’t afford them.” Sadia says her father is also a wonderful sounding board on the evenings when she sleeps at home. “Sometimes I have to talk and some things I can’t discuss with my son.” 

Sadia says she’s lost contact with many friends. “I can’t relate to what is going on in my old world,” she says. While friends offered support when Zoya was first hospitalized, it petered out over time. “I don’t ask for help and that’s okay because I have enough to worry about.” She said one or two friends have stuck by and she appreciates them. “They don’t expect me to be normal.”

Some of her best support has come from Zoya's school. “Her teacher visited in the ICU and her friends have sent so many cards and so much love to Zoya. They did a marathon in honour of Zoya and talked about her strength and how she is fighting this disease. Her teacher is still coming and she made me a special book with all of Zoya's school pictures and her drawings and journal entries. It is so precious to me.”

If she takes any time for herself, Sadia says she feels guilty. “I pray, and that’s the only thing that helps. We are Muslim and I have my praying mat here beside Zoya’s bed. When I pray I am talking to God and giving my burden to him. That’s the only thing that releases my burden, and makes me feel that I’m not alone.”

Sadia says she enjoys speaking with other parents on the unit. “Even though their situation may be different, in the end they are feeling the same as I am—they are feeling pain for their child.”

She says it’s important to stay focused on small signs of progress Zoya has made. “It reminds me of the ups and downs, and how we survived and had hope during the worst times. We were initially told she would be on the ventilator for the rest of her life. But one day a respiratory therapist noticed that Zoya was breathing on her own, even though she was in a coma. We were told she would never open her eyes, but she is opening her eyes. We were told she would never be able to move, but she is able to move. She is improving and I know she's trying her best to get out from this condition. My little doll is a fighter.”

Sadia says encouragement from staff gives her strength. “Without encouragement, I question whether I am doing enough, or doing the right things. I am so lucky. My experience at Holland Bloorview has been amazing. Even the cleaners, while mopping the floor, will ask how my daughter is and how I am doing. Just saying these words can make my day.”

She says it’s important for staff to remain positive, even if parents become impatient or demanding. “They need to remember that the parent doesn’t come here willingly, they’re not enjoying the situation. Parents want help. Sometimes parents become stressed and demand things. Sometimes they are out of their mind. But if they don’t get a positive response from staff that will just increase their anxiety.”

For staff that has trouble relating to what a family is going through, just taking a minute to be present and listening helps, she says. “Be there. Listen and say ‘I can hear you and I hope things become better for you.’ Encourage parents that they are doing their best and to keep doing it. This builds our strength.”

To other parents she says: “Don’t give up your hope. Stay together as a family and be there for each other. I need my family more now than I ever have. Take things day by day. Be thankful. We are so thankful that Zoya is still with us.”

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Simple questions that go unanswered

In May 2012 my son was approved for funding for a laptop at school. The desktop computer he previously had at school was so old that it didn't have functions he needed for computer science class.

I followed up about this computer but kept being told it was in the "system," which I understood to be going through some kind of government checks to ensure money isn't wasted.

Two days ago I met with some therapists who were going in to Ben's school on another matter. "I'm embarrassed to say that I don't know if he ever got the laptop he was approved for," I told them in advance.

Years ago we had a situation where Ben waited over a year for a computer he was approved for, and I e-mailed the superintendent of special education and everyone else I could think of for months, and followed up with calls, and stamped my feet, with zero effect.

The therapists who went into Ben's school yesterday confirmed that he does not have the laptop -- the one he was approved for 18 months ago. Apparently sometimes requests get "lost" in the system.

It seems to me that the process of funding and delivering computers to students with disabilities needs an audit. What is the average wait time for delivery of these computers?

Could any business operate by delivering products 18 months AFTER the request was made? And wait. We don't have delivery yet, and we don't even have an estimated time of arrival.

What is the point of approving a computer that is going to take more than 1 1/2 years to get into the classroom? Couldn't a child's needs change over that amount of time?

And during that 1 1/2 years, what happens to the dollars that were supposedly allocated to its purchase?

Simple questions, really. But ones that parents like me are too busy or too tired to keep asking.

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Virtual exercise game connects kids with cerebral palsy

Holland Bloorview is marking World Cerebral Palsy Day with a demo of the Cycle to Fun project that combines exercise bikes and a virtual video game to motivate kids with cerebral palsy to exercise while having fun and making friends.

"Our study is focused on kids who are using a walker and who might typically have moved to a wheelchair for longer distances," says Dr. Darcy Fehlings, a developmental pediatrician at Holland Bloorview who's partnering with computer science professor Nick Graham at Queen's University.

"We wanted to develop a game that's fun and keeps their muscles strong so they can continue walking with a walker. We find that they grow a lot in their teenage years, but their muscle strength doesn't increase, so they become more tired when moving and that leads to a decrease in fitness. What's also unique about our project is the idea that we can use networking to decrease social isolation."

Youth can log into the game and pedal and play together, getting their therapy done while making friends. 

The game is still in the research stage. For more information, contact Lauren Switzer at lswitzer@hollandbloorview.ca.

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'I saw resilience,' summer research student says

Masha Koroleva is a fourth year psychology student at York University. This summer she was a research student in the Bloorview Research Institute in the Ward Family Summer Student Program. Masha’s own experience with illness that left her bedridden sparked her interest in working as a clinical psychologist with children who may be marginalized by disability or chronic
health conditions.

BLOOM: Tell us about your work in the Bloorview Research Institute?

Masha Koroleva: I worked on a number of research projects with scientist Amy McPherson and postdoctoral fellow Ian Patton. The main project was looking at child disability and obesity and developing something called the Healthy Body Scorecard. It aims to be a holistic, comprehensive, but easy to use health-screening tool that looks at healthy lifestyle factors and behaviours in children with and without disabilities.

BLOOM: Why is this tool needed?

Masha Koroleva: The trend in health screening is to rely on body mass index, which is a ratio of height to weight. But that isn’t a very holistic way of understanding what could be contributing to someone’s weight and health issues. It’s more important to look at behaviours, lifestyle, environmental factors and to understand that someone’s health is a constellation of different contributing factors.

BLOOM: What did your work involve?

Masha Koroleva: I analyzed a subsection of a survey targeted to doctors, nurses and dietitians across the country. We wanted to understand what professionals are using as health screening practices for children with disabilities, what are the gaps, and if we were to develop the Healthy Body Scorecard, what would these professionals like to see in it.

BLOOM: What did you find?

Masha Koroleva: It confirmed that doctors, nurses and dietitians are primarily relying on body mass index as a health screening tool. But we know there are problems with using it as a sole indicator of health because a lot of kids with disabilities have very different body compositions. They can’t be compared to typical growth charts. The survey participants recognized these measures were inappropriate, but they didn’t have anything else that was easy to use.

BLOOM: What did the doctors want in a new score card?

Masha Koroleva: They were interested in three domains: child health behaviours and child health attitudes—not just what do you do, but how do kids think about health and what they know about healthy eating—and family lifestyle.

BLOOM: Why is weight a particular issue for children with disabilities?

Masha Koroleva: Children with disabilities are less likely to participate in sports, more likely to have a sedentary lifestyle and more likely to eat high-calorie food. Sometimes there are also genetic factors.

BLOOM: What was it like working as a research student here?

Masha Koroleva: It was extremely exciting. Disability is something I’m very interested in. I’m very interested in people’s illness experiences and the idea of resilience and how people find themselves in very challenging circumstances and the ways they come up with to adapt to them.

I got a chance to work with some inpatients interviewing them about health-related programs like Busy Bodies. I got to write a paper on understanding current health practitioner screening practices based on our survey. At the Ward Family Day I talked about my research, made a poster, and gave a presentation.

There were a slew of lunch-and-learns that exposed me to different disciplines and to learning about different types of disability. That was eye-opening in understanding the uniqueness of every person’s challenge, and how for granted we take our own abilities.

BLOOM: What did you get from your work with children?

Masha Koroleva: Small, little interactions I had showed me the incredible power and resilience of people and the ability of every child to surprise you. It wasn’t necessarily this big heroic thing, but you’d see these little resiliences. I asked a boy in the spina bifida clinic what he was doing for the summer and even though it seemed that physically he would face a lot of challenges, he said he was taking a course in history and editing his own movies and soundtracks. I saw resilience in very simple, everyday actions.

BLOOM: What did you learn from parents?

Masha Koroleva: One of the interesting things parents said about Busy Bodies—which is a program focused on teaching kids about healthy lifestyles and nutrition and getting out to play sports and do new activities—is they all wished the program went on all summer, not just for one week of camp. They felt their children could only learn about healthy lifestyles if it became a given, something that was part of their routine everyday over time. They wished these programs were more available.

BLOOM: What was it like working at Holland Bloorview?

Masha Koroleva: I don’t think there’s any place like Bloorview that would have given me such a broad scope of what is possible and what exists. Everyone here seems so highly motivated and there’s a lot of love and community. It was great to be able to tap into that.

Also, just the way the physical space of the building is designed is very conducive to how it functions. The first thing you notice is the physical structure and that sets the tone for how the internal aspects of Bloorview work: the amount of light, how well thought-out and accessible the spaces are, the proportions of the rooms and the details of the space with so much green around us. I think that’s good for the soul and it helps the mind function.

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Be gone joy-thief

I was elated when I read this blog post by Anchel Krishna at Today's Parent. It's about her daughter, who has challenges speaking, having a "real conversation" with words.

When asked about her day at school, Anchel's daughter offers up what she considers the most salient piece of information: "Cried a little bit," she tells her mom and grandmother, ignoring their specific questions. "She had a message, she had something she wanted to tell me... and she told me," Anchel writes.

I also felt heartache when I read Anchel's post. I will never hear my son say words like that, I thought.

Remember that old saying: Comparison is the thief of joy (Theodore Roosevelt)? I couldn't help comparing my son's abilities with Anchel's daughter's and feeling that twinge of regret and loss.

But then today, when my son got off the bus, he presented me with his own version of: "Cried a little bit."

In sign, he told me "I had a bad day and I couldn't stop blowing my nose (he does this when anxious). I'm sorry."

Like Anchel's daughter, my son was sharing what he wanted to tell me. And I had to think: Does it matter if it's not in audible words?

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Connecting the dots

On the weekend I was in Chapter's and noticed this memoir on a prominent display: I'm Sorry You Feel That Way: The Astonishing but True Story of a Daughter, Sister, xxxx, Wife, Mother and Friend to Man and Dog.

Entertainment Weekly called it a must-read and described it as "nostalgic, sad, and pee-in-your-pants funny." A review in the Los Angeles Times says "it's hard to recall another collection of essays, or a memoir, with more natural charm."

I turned to the back cover and read this:

Here's a quick way to determine if you're going to enjoy Diana Joseph's essay collection, I'm Sorry You Feel That Way. Read the following:

"Yesterday my son was turning the pages in his eighth-grade yearbook so we could play a game I came up with called Guess Which Kids are Retarded. The boy thought the game was terrible, so cruel and so mean that I should have to pay a fine, I should have to pay him ten bucks every time I was wrong."

If you find that paragraph offensive, you will hate this book.

If you know you should find this paragraph offensive, but secretly find it hilarious, you should buy this book. Immediately.

Really? Let's imagine the author had replaced "retarded kids" with another marginalized group: gays, for example, or immigrants, or people with physical disabilities? Would that line still be considered funny? This book was published in 2010. Has humour evolved so little that "retarded kids" must be relied on as the brunt of jokes between mother and son?

In the past, I would have just put the book down and forgotten it.

But instead, I couldn't help remembering a conversation I had with a Toronto mother of a young woman with intellectual disability last week. She was telling me about her daughter's efforts to find work. Mother and daughter had visited a case worker at an employment support program. They were referred to agencies who could help the daughter find work.

These agencies place people in positions at well-known retail, grocery and restaurant chains.

But guess what's on the job description at every single one? Cleaning the bathroom. Yes, cleaning the bathroom is on ALL job descriptions made available to people with intellectual disabilities. The mother and daughter were forewarned.

Is there some reason why people with intellectual disabilities are better at cleaning toilets than the average person? 

Yes, I guess you could say someone has to clean the bathroom, and students and young adults who are looking for work have to be willing to do anything.

But what does it tell you about how the business world, our government and our culture view people with intellectual disabilities when the ONLY job available to them involves cleaning human waste?

And is the message at the employment support program any different than the one the memoirist above gave her son—the demeaning one that won her rave reviews? Even Library Journal calls her "trenchantly funny." 

The employment support program explained to mother and daughter that whenever a person is placed in a job, the agency that did the placement receives a grant from the government. "Person with intellectual disability cleaning bathrooms? Job well done!"

Sometimes it's really depressing to sit at my desk, reading news stories on disability and hearing from families on the frontlines. 

Sometimes I'm tired of connecting the dots in a system that blatantly discriminates against people like my son, then serves it up as sanctioned literary comedy.

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