Return on disability

This story on CBC's The National last night looks at the economic benefits of hiring people with disabilities. It includes an interview with Rich Donovan, CEO of Fifth Quadrant Analytics in New York City, a company that helps businesses assess how well they’re engaging people with disabilities as employees and customers. We interviewed Rich here last year. Check out how companies like Walgreen's are making money by innovating in ways that accommodate employees with disabilities.

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Immigrant moms hit a service wall

York University researchers Nazilla Khanlou and Mahdieh Dastjerdi (above) share the findings of their study on the experiences of 30 immigrant moms in the Greater Toronto Area and their service providers. Rich findings about the barriers faced and how we can better support immigrant families were offered at this BLOOM speaker night.

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A therapist finds herself in parent shoes

At five days old, Lucas Puchta had an MRI.  

He was born with a port wine stain on his face, which can sometimes be a sign of Sturge-Weber syndrome, a rare disorder where an excess of blood vessels is found on the face and the brain, causing an increased risk of seizures and other symptoms. 

Lucas’ mom Lizna was told that the MRI came back clear, “so I put it behind me,” she says. “Other than being told that he had a life-time risk of developing glaucoma due to the location of the port wine stain, he was developing normally.”

At seven months of age, a resident informally told Lizna that one of Lucas’ more recent scans looked like Sturge-Weber. At nine months, just two weeks after being formally diagnosed, Lucas had his first seizure. In the next 10 months he started bumping into things on his right, developed stroke-like episodes, absence and myoclonic seizures, and lost all skills, putting him in the first percentile for his age.

What was unique about Lizna’s experience was that she'd worked for 10 years with children with disabilities, mostly as an occupational therapist. “I had fought for my families when I worked in pediatrics, but could I fight for my own?” she asked herself. “I didn’t know if I could do this.” Lizna explains why it was so difficult to be on the other side of the fence.

BLOOM: You said professionals didn’t listen to you.

Husnani-Puchta: ‘Wait and see’ was always the answer we would get. That was frustrating because they talked to us as if we didn’t really understand much, or didn’t do our homework. It’s not a common condition, but I felt like I had to do all the educating. Over and over again, in hospital, we were asked: ‘So what is this condition?’ I’m in a hospital and my child is having a seizure. I’m sorry, but do your homework before you come in to see the parents. You have access to his health records. Look at them.

BLOOM: Did you feel your concerns were taken seriously?

Husnani-Puchta: No. After Lucas first went on seizure medication we noticed he was bumping into obstacles on the right side of his world. He wouldn’t notice food that was placed on the right side of his tray. I said ‘I don’t think he sees on the right’ but was dismissed. I was told it could be an effect of the meds and that it was hard to know because he was so young. Three months later, in emergency due to stroke-like episodes, we were told: ‘Yes, you’re right. He does have visual field defect’ which means he only sees half of the world.

BLOOM: What was it like to see Lucas lose the skills he had?

Husnani-Puchta: I broke down. I felt I had lost my son. His body was there but his personality was gone. My son is an engaging, social boy who loves to walk and loves to interact with his environment. He had signs, he had words, and he lost all of that. He didn’t respond to questions he knew like ‘What does a lion say?’ and there was a huge regression in his motor skills.

I would send e-mails to his neurologist and neurology clinic nurse and leave messages on voice mails crying, saying ‘You have to do something. The medication isn’t working. The meds just make him more and more sleepy.’

BLOOM: I understand Lucas had an emergency video EEG that showed that the disease had progressed from the left to the right side of his brain?

Husnani-Puchta: Yes. We were finally shown all of the EEGs and MRIs and we could see how the left side of his brain was shrinking due to the seizures. I was flabbergasted. They said he was a good candidate for surgery to remove the diseased portion that was causing the seizures and disconnect the left from the right part of the brain. He had the surgery a month after this meeting, spent 10 days in hospital and then was transferred to Holland Bloorview.

BLOOM: How did he respond?

Husnani-Puchta: Amazing! I have my son back. He’s seizure-free. Every week he is showing new skills. He smiles, he laughs, he engages and he knows how to get you to laugh. He’s walking, he has words, his brain is reorganizing and creating new pathways. 

He still has the visual field defect but he’s aware now, he’s present, he’s learning that things can be behind him. At our last family team meeting, specialists from the Canadian National Institute for the Blind sat in and they were shocked at how well he was doing with his vision. 

If you’re on the third floor everyone from the kitchen staff to nurses to cleaning staff know Lucas because he has his wave and he does his fly kisses and he says ‘uh oh’ and ‘go, go, go.’

BLOOM: Lucas had his surgery at 19 months. Do you feel he got it soon enough?

Husnani-Puchta: I think if he’d gotten an MRI with contrast dye sooner, and if we were taken seriously, and if there was more awareness among the various professionals about Sturge-Weber, maybe we’d be in a different place. Maybe he wouldn’t have developed seizures or his seizures would have been controlled better. It was almost eight months before Lucas was assigned one staff neurologist. Before that we were bounced around in the department and seen by a different neurologist each time. After my emotional plea around receiving appropriate care and the lack of improvement in Lucas' seizures, the department finally assigned us to one staff neurologist.

Other countries have programs in place to increase public awareness about Sturge-Weber: programs aimed at prevention, early detection and diagnosis, professional training and funding for centres of excellence. In the U.S. they have 10 centres of excellence where the doctors focus on research and treatment and everything to do with Sturge-Weber. I think I would have been taken seriously there.

BLOOM: Has this experience made you reflect on the families you work with?

Husnani-Puchta: I don’t know what would have happened if I didn’t advocate. If I didn’t cry. If I didn’t write e-mails. I don’t think we would have had that surgery as early as we did.

Going through that process has made me realize: What do parents do when they don’t speak English? What do they do when they just accept whatever the doctor says? What happens if they wait, like they’re told to do, and they don’t knock on that door? And it’s not just about the surgery. I knew the system. I knew to put Lucas on wait lists for speech and early intervention. I knew there were preschools for kids with special needs. But professionals didn’t tell me about them. I knew they existed because of my work.

BLOOM: When you return to work as an OT, how may you approach it differently?

Husnani-Puchta: I’ll be more empathetic, because I know what they’re going through. I am going to provide them with any tips and strategies and resources I can. And because I know they can’t remember everything, I will make sure I provide the information not only verbally but in writing as well.

BLOOM: How can we build empathy in professionals who don’t have first-hand experience parenting a child with special needs?

Husnani-Puchta: Actually listen. There has to be a course on listening. Because so often the follow-up questions we got indicated that professionals weren’t listening. I would list so many concerning things about my son and the response would be: “So how’s he doing otherwise?” It was like they didn’t hear anything I had just said. And they don’t read between the lines.

BLOOM: Did you feel that you understood your families before you had Lucas?

Husnani-Puchta: I thought I was empathetic but my level of empathy wasn’t where it is now. When a family is dealing with multiple issues in one child, as well as managing appointments, paperwork, funding, communicating with all team members and let's not forget about advocating, it’s a full-time job.

It’s so hard to do everything and get it done right and follow through with programming goals at home. I can see why families are so exhausted. When parents don’t do their homework it’s not that they don’t want to, or that they’re not complying.

I was exhausted mentally dealing with Lucas’ safety, with making sure I put on his helmet, with timing how long his seizures lasted, with deciding whether to give Ativan and/or whether to go to the emergency room, and on top of that was all the therapy stuff I could to be doing with him at home. 

But he’s not even present, I’d think, he’s not here. Why should I be following through with recommendations for his vision, speech, cognitive and motor development? I didn’t want to be his therapist. I wanted to be his mom.

BLOOM: I understand you want to create better awareness of what families go through?

Husnani-Puchta: I do have a passion to raise awareness and I am willing to talk to any parent, regardless of disability, to share with them the resources I know of. Because even when I knew my resources, I still had difficulties. 

For example, funding through Special Services at Home has been frozen since I began working as an OT. Yet most online information includes this as a possible funding avenue for children with special needs, giving false hope in my opinion. And the income cap for Assistance for Children with Severe Disabilities hasn’t changed in a decade, even given inflation in a city like Toronto. 

We were denied care for Lucas through Community Care Access Centre and not notified when he didn’t qualify for services. It was frustrating falling through the cracks of our health-care system and experiencing this firsthand.

I’ve got a Facebook group for Lucas and I try to post as much as I can. If just one family can learn from our experience navigating the Canadian health-care system, I’ll have done what I wanted to do.

BLOOM: What most helped you cope during Lucas’ illness?

Husnani-Puchta: I think finding a similar family to talk to. I found support groups a bit overwhelming, but through social media I was able to connect with another mom in Ontario whose child has Sturge-Weber and went through the same surgery as Lucas. We talked for an hour-and-a-half. I always asked to be connected to other parents at the hospital, but no one ever followed up.

BLOOM: I understand you have plans to create practical information for other families whose kids have Sturge-Weber?

Husnani-Puchta: There’s excellent information online about Sturge-Weber in the U.S., but nothing about the Canadian experience. Another parent and I would like to create resources for families in Ontario and then move across Canada. Our children are affected in so many areas. As an OT, I was fortunate to have worked in pediatrics. I knew about these resources. But most families are not in my shoes.

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Are kids with 'behaviours' bad?

The other night I woke with a vivid memory.

I was in junior high taking band class. 

Because I didn't step up quickly when the horn instruments were handed out, I ended up playing the oboe. 

The oboe is a woodwind instrument that looks like a clarinet but has a long, double reed. In the Middle Ages it was played by huntsmen and shepherds. It has an unusual, haunting sound.

You can imagine what it was like to hear a group of students play a trumpet or french horn or oboe for the first time.

Our music teacher was kind, exuberant and patient. In time we made progress.

But one day something upset him. I don't remember what it was. Perhaps one of the students purposefully played out of key, or did something to grandstand.

I started to laugh, and I couldn't stop.

The teacher reprimanded me.

I was not a student who got in trouble.

I earnestly wanted to stop laughing, but I became nervous. Very, very nervous.

Now the class was silent and everyone was staring at me.

"Louise, you're being incredibly disrespectful," the teacher said.

"I'm sorry," I said, but giggles continued to splutter out of my mouth.

"Shhh!" whispered the other oboe player.

I was now red with embarrassment, but I couldn't stop.

"Louise!" bellowed the teacher. "That's enough!"

He thought I was defying him. He thought I was laughing on purpose.

I think the reason this memory came to me was because it shows how easy it is to attribute malice to behaviour that is actually prompted by anxiety.

My son has compulsive behaviours that emerge when he's anxious. He knows he's not supposed to do what he's doing, but he gets stuck in repetition. 

I think our world is most unaccepting of difference when it involves behaviour. We're most uptight about how people act, more than we are even about a person's abilities or how they look. 

It reminds me of a study published in Autism that looked at parenting stress in two groups: one of mothers of preschoolers with autism and the other of mothers of preschoolers with developmental delay. The study found that challenging behaviour was more stressful than a child's need for greater physical care, such as feeding, dressing and toileting.

People have greater compassion for parents who have to help their child with everyday activities other kids have mastered than for parents who are supporting a child who doesn't "fit" social norms.

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How misguided values make us sick

A number of stories crossed my desk recently that made me think about how our culture assigns value to people and how this disadvantages families of children with disabilities.

First I read this New York Times piece about how we tend to equate a person’s income with their inner worth: You are the money you make.

This measuring stick not only divides people socially, the authors say, but it harms them at a personal level, making some meaner and others sad and fearful. 

A study referenced suggests mania and narcissism are the byproduct of our efforts to achieve economic status, while anxiety and depression are a response to poverty.

These tendencies are magnified when the gap between rich and poor widens.

For example, the authors note that mental illnesses are three times as common in developed countries where the differences between rich and poor are bigger.

“As larger differences in material circumstances create greater social distances, feelings of superiority and inferiority increase,” they write.

Then I read this study that uses the 2010 Ohio Family Health Survey to look at differences in financial and psychological stress levels between parents caring for children with and without disabilities.

The study shows that children with disabilities are 3.4 times as likely to live with parents with high financial stress and very high psychological stress than children without disabilities. This finding was based on surveys with 210 households with a child with disability and 1,614 households with a child without disability.

Because U.S. parents are more likely to have to cut back on their work hours or leave a job completely to care for their child with disability, they’re more likely to experience significant financial problems. Side note: Yesterday we read this story about a single mom who was fired because she stayed home with her child with special needs on a snow day.

In the Ohio study, parents caring for children with physical limitations were almost three times as likely to be unable to pay for basic needs; two times as likely to have used up most personal savings; and two-and-a-half times as likely to be unable to pay household bills.

Those caring for children with behavioural, emotional or developmental problems were almost two times as likely to have problems paying for medical bills; twice as likely to be unable to pay for basic essentials; and 1.7 times as likely to have used up personal savings.

Overall, the families of children with disabilities were 4.2 times as likely as those without to be classified as having serious depression and twice as likely to need treatment or counselling for mental health, substance abuse or emotional problems.

They're facing two cultural stigmas: The idea that disability somehow reduces a person’s value, and the notion that reduced income, as noted above, further erodes one's worth.

Yesterday I read this blog post by Joel Yanofsky, author of Bad Animals, a memoir about raising his son Jonah, who has autism.

In it, he recounts a situation many of us can relate to. You’re at a party, talking with someone you’ve never met, and they begin fretting about which university their child is going to get into. It’s a kind of twisted social-ranking game for party-goers, because you know that as soon as this parent gets the largely feigned angst out of their system, they’re going to turn to you and ask about your child’s university prospects.

Joel writes: “She began describing her son’s efforts to find a good CEGEP – CEGEPs, here, are the equivalent of U.S. junior colleges – once he graduated from high school. I knew, of course, where the conversation was headed and braced myself.

“Your son must be thinking about CEGEP, too,” she said.

“Jonah is on the autism spectrum,” I said. “He attends a special needs school. College isn’t likely to be in the picture.”

A long silence followed; it seemed long anyway. There wasn’t much for her to say. She hadn’t said anything wrong. If anything, I felt a little bad for her. I’ve come to terms with the fact my son has autism, but that doesn’t mean I’m not brought up short, on occasion – reminded all of a sudden that your life, his life is going to be very different from the lives of other people. It’s what I call the “what-if-moment” – the moment you can’t help wondering what if your son didn’t have autism. What would his life, your life be like?”

The crux of the matter is that families like ours are different. Our kids may or may not achieve conventional success. Hopefully they’ll spur us to question what a good life is, and open a window in the minds of those around us too. Maybe we'll help others see that our culture's values could use a tweaking. Instead of focusing on how much we can get in life, perhaps we can focus more on how we connect.

Following the death of actor Philip Seymour Hoffman this week, I saw this fascinating interview he gave with the philosopher Simon Critchley. The two chat about what it means to be happy.

Hoffman quickly discredits the idea that happiness is pleasure. “I would definitely say pleasure is not happiness,” he says. “There is no pleasure that I haven’t actually made myself sick on.

“I think I’m happy when I’m with [my children] and they’re okay,” he continues. “Something happens in that moment when they’re okay and that’s an important thing. When I see them enjoying each other and then they let me enjoy them in turn…that brings a feeling which I would say is happiness.

To which Critchley suggests that happiness isn’t something internal or something we can stockpile, like money, but that “it lies without. I think it lies in our very specific relationships with people.”

Which helps explain, I think, why we parents find joy in our children, regardless of their abilities or health. There’s something about the presence of our children—our relationship with them, separate from what they can do, how well they do it, and the way other people see and evaluate them—that can fill us with contentment.

If only we didn’t have to justify them to others.

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