Thursday, April 10, 2014

A parent's search for acceptance

By Louise Kinross

Perhaps it’s the nature of Twitter’s brevity, but I see a disturbing trend in people tweeting simplistic, declarative statements about how parents of children with disabilities ‘should’ feel and think.

An example is this tweet on Autism Awareness Day:

I do not long for a non-Autistic version of my child. I have the child I want. I LOVE the EXACT child I have.

My thinking was, great for you, but what does this have to do with where other parents may be on their own journey to accepting their child’s differences?

Acceptance isn’t a finish line, an endpoint, that you cross. It’s a chaotic process without a clear path, one that despite your best intentions, often sees you circling back. You walk through a forest of shock, denial, grief, guilt and outrage before you get to that small clearing. And just as you think you’ve arrived, you find yourself back in thick brush.
Are parents of disabled children not allowed to have the messy, ambivalent feelings that all parents—I would argue, all people, regardless of whether they have a disability or not—have?
Does it help parents who are struggling with their child’s disability to mandate the kind of feelings they should have? To have them recite simplistic, black and white statements about their relationship with their child—and attempt to snuff out any feelings or thoughts that diverge?
The tweet above is a response to a quote from Andrew Solomon’s Far From The Tree in which an adult with autism recounts how painful it is to recognize that his parents can’t accept a fundamental part of who he is.

“When parents say, ‘I wish my child did not have autism,’ what they’re really saying is that they wish the autistic child they had did not exist, that I had a different, non-autistic child instead. This is what we hear when you mourn over our existence.”
I think the truth of that autistic adult’s experience can exist with the truth of what it’s like to parent a child that one's culture largely views as undesirable, and in many respects expects parents to “fix.”

I’ve found parenting a child with disabilities (not autism), a humbling experience. Having a child that others desperately seek to prevent, as is evidenced in the dizzying race to refine prenatal testing, forces you to reexamine all of the values you grew up with, the comfortable little set of ‘This is the way the world works’ rules you deluded yourself into thinking were real.
One of the platitudes I especially found to ring hollow was: “If you work hard enough, anything is possible.” It still surprises me that I actually believed that growing up, that I was that gullible.

Now I know that it’s not true for any of us, whether we have disability or not. We are all mortal, we all have our limits, and we all fear that in some essential way we don’t belong, that there’s something ‘wrong’ with us, that we’re not good enough. As Jean Vanier says: “We were born in weakness and we will die in weakness.”
Having a child who was different forced me to strip away my own desire to fit in, to not rock the boat, to pretend that I had things “all together.”
It forced me to recognize all of the ways in which I feel inadequate, the ways I wish I was a better person, a better parent, more perfect, less human—but am painfully aware that I am not.

In an op-ed piece in The New York Times, David Brooks talks about how experiences that upend our world view change us.

“First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of having lost a loved one smashes through what they thought was the bottom floor of their personality, revealing an area below, and then it smashes through that floor revealing another area.
Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone. And even when tranquillity begins to come back, or in those moments when grief eases, it is not clear where the relief comes from. The healing process, too, feels as though it’s part of some natural or divine process beyond individual control.”

In a recent talk in Toronto, Andrew Solomon spoke about acceptance as a spiritual practice and quoted from the gnostic Gospel of St. Thomas. “Jesus says, ‘If you bring forth what is within you, then what is within you will save you; if you do not bring forth what is within you, then what is within you will destroy you.’”
I wasn’t at that talk, but those words seem to get at the heart of digging deeply and honestly within ourselves to see what is there—the good and bad, the enlightened stuff and the petty, fearful stuff we wish we were past. To let it all rise to the surface where we can see it clearly and compassionately.

In my mind, the process of raising a child with disability forces us to look at all of the ways in which we, as parents, don’t accept ourselves.
I think when a parent wishes that their child were different, they are often, in fact, wishing that they could make themselves less imperfect, less fragile, less helpless in a world over which they exert such little control. They are silently screaming at the injustice that they are unable to complete a parent's most basic task: Protect your child.

To me, the process of acceptance in parents raising children with disabilities is twofold: it’s parents cultivating love and understanding for their children and it's parents developing love and compassion for themselves. Those two experiences are intertwined and can’t be pulled apart.
This weekend there’s a festival for artists with disabilities called Tangled in Toronto. Its promotional material includes this lovely quote by Eliza Chandler:

"Tangles are messy and imperfect, but they are also complex, intricate, organic, even deliberate."
That, to me, is a fitting description of the rich emotional experience of raising a child with disabilities. We need to stop insisting that it’s not.

Friday, April 4, 2014

Taking steps, together, with 'Upsee'

By Kara Melissa Sharp

When I first heard about the Upsee, I knew I wanted to be a part of the trial. A device that would allow Sebastian to walk with me, attached to a vest and harness, just made sense. Ever since he was a baby and first started to bear weight and walk, we were holding him up.

He does not have the upper body strength to do it on his own, his muscles cannot work together and give him the balance and strength he needs, so we were that strength.  

Hunched over, we held him up, hands under his torso, so he could move one leg in front of the other, because that’s what babies and toddlers do. They learn to walk. We were so excited at his ability to move his legs but what made us happier was his own happiness and the excitement he felt with each step.
Fast forward to today. Sebastian is almost six years old and uses a wheelchair to get from one place to the next. He also uses his Kid Walk walker to walk the halls at school and around our home on the weekends. He especially likes walking outside in the summertime and kicking a soccer ball around. Although his Kid Walk does have a fairly open front, he is still very well supported, which means he’s surrounded by the equipment itself. He still gets excited with each step and loves moving around. It give him a sense of independence.

But we can’t take his walker everywhere. He can’t get up a hill in it. It doesn’t fit in our car with his wheelchair and luggage when we take a road trip to see his grandparents and cousins every few months. It stays at school during the week. This piece of equipment that gives him independence, as well as therapeutic exercise, has its limitations. When we take a walk to the park as a family, Sebastian is in his stroller and his dad gets him out and helps him walk from the swings to the slide. He is hunched over, hands under Sebastian’s arms, holding him up. He then goes down the slide with him, or sits on the swing with him.

Including Sebastian in everyday activities that all children his age experience is important to us. We modify whatever we need to to make it work. As Sebastian grows, even though he loves to cuddle, he doesn’t necessarily want to be carried everywhere. As a young child, it’s also important to me that he’s not in his wheelchair all the time. Especially when he was in pre-school and his peers would often engage in play at floor level. I want him to be in different positions to help him grow and develop. I want him to be invited and included in his peer groups whenever possible.

Enter the Upsee. A product invented by a mom whose son also has cerebral palsy. A mom who wanted to walk around the neighbourhood with her son, but didn’t have access to equipment like a Kid Walk. A mom who wanted her son to learn what his legs were and what they could do. A mom who wanted to go camping and involve her son in family activities. 

The Upsee is a vest, harness, waist belt and double set of sandals. It is a device that allows a child to stand tall, while being connected to a parent who holds them up, hands free. Both feet are side by side and the action is similar to a child standing on your feet to dance, but they are parallel instead. You work together to walk together. But your arms are free, and your child is facing the world, no barriers.

The first time I used it, I struggled. I wanted to walk and I wanted Sebastian to walk. Instead, I had to wait for his cues. I had to be patient and let his feet take the lead. Otherwise we wouldn’t be in sync. Once I realized this, I could feel his left leg struggle since his hip is somewhat displaced. I felt his right leg leap forward with ease. And we walked around our home. 

We walked through places that his walker doesn’t fit. He saw things from a different perspective. We counted steps and he got excited, picking up the pace a bit. When he tired, we stopped and stood together for a break. As we did so, his younger sister came toddling up to him, threw her arms around him and gave him a big bear hug. After the shock of such a spontaneous interaction between my children, I helped him hug her back. The following week, his sister asked me to stand Sebastian up every day when he came home from school so she could hug him. She can’t hug him when he’s in his walker. And often, she’s trying to help push and steer him. When he’s in the Upsee, she comes and grabs his hand and walks next to him.

Recently, I was invited to attend the Upsee launch in Northern Ireland with a group of other parent bloggers. I took my family and the Upsee with me. We decided to make it a family holiday and did some touring around, including a trip to the coast and the Giants Causeway, which is full of hexagonal shaped rocks leading into the water, like a bridge trying to connect Ireland and Scotland. Although the path to the Causeway was paved and accessible by bus, we chose to take Sebastian in the carrier and brought the Upsee along with us. Once there, he was able to walk along the rocks with his dad (see photo above). I also carried him on my back in a carrier and enjoyed that. But it was difficult for him to see over my shoulder all the time.

When he was in his Upsee, he could feel the sun on his face, felt the uneven ground beneath his feet. His chest was stretched wide open in his vest, which is important since he tends to hunch forward, especially in the carrier. At one point a new friend asked us to pose for a photo. Suddenly, I was overcome with emotion. Here we were, all standing together, in an exotic, rustic locale. I wasn’t holding him. We weren’t crouching down to be next to his wheelchair. We were all standing there. Together.

After the Upsee launch, the media posted a photo of three beautiful children, whom I had the pleasure of meeting, standing tall and taking steps in the Upsee with the support of their parent behind them. The photo has gone viral in the special-needs community. Everyone is very excited about the opportunity these children have to explore the world around them in a new, very inclusive and interactive way. And everyone wants one for their own child. I am so excited to be a part of the buzz and help get the word out about the Upsee.

I had the pleasure of meeting the team behind the Upsee and touring the factory where it is made by local folks in Belfast, making a living wage. The company believes in its product and wholeheartedly wants to make life more accessible for kids with physical disabilities and make sure they can be included. It feels wonderful to be a part of something that can change the lives of so many families. Yet despite all the positives, I have read some negative comments about how the Upsee is trying to ‘normalize’ these kids into walking in a society that places such importance on walking. Although I can respect this point of view, I don’t see the Upsee in this way at all.

I see the Upsee as an accessory that can make certain things, like travelling and off road adventures, more accessible. I see it providing Sebastian with therapeutic exercise which is especially important when we are away from home and don’t have access to his walker or other standing equipment. I see us taking it to the park so that his dad doesn’t have to bend over to hold him up to walk around, taking a break from his stroller and interacting with his sister and other children.

I don’t see it as something that is trying to ‘normalize’ children who cannot otherwise walk. I don’t think that it says walking is better than using a wheelchair. I see it as something that can complement our lives, which can otherwise be restricted by obstacles. I think it also supports independence, even while being supported by an adult. I don’t think it says, "You are broken, I’m going to fix you, because walking is better." My son loves walking. He wants to walk. He needs help to do it.

He also likes being in his wheelchair, probably because we refer to it as his Red Racer and he goes fast in it. But also because it gives him the support he needs to eat and do another activities he cannot do independently, and he knows that. The Upsee is designed for children aged two to eight. This is a huge time period for development for children. Having access to different positions, experiences, and peer relationships is imperative for optimal growth. The Upsee helps with all of these.
I see Sebastian’s happiness in walking and interacting with the world around him in a way which feels free of barriers, echoed in the smiles of the other children I have met using the Upsee. I want my child to be included, in everything. And the Upsee helps make that not only possible, bit easier. 

Friday, March 21, 2014

Walgreen proves the business case for hiring 'disabled' staff


In 2006 Randy Lewis changed the way Walgreen Co. does business.

As senior vice-president of supply chain and logistics for the U.S. drug store chain, Lewis oversaw 10,000 employees and up to a thousand new hires each year. As a father to Austin, who has autism, he knew the difference a job could make in the lives of young people with disabilities.

In No Greatness Without Goodness Lewis explains how he brought his corporate and personal worlds together, transforming Walgreen's distribution centres into inclusive workplaces where people with all kinds of physical and mental disabilities, many deemed unemployable, work to the same standards and earn the same pay as other staff.

The company's new mindset is proclaimed in a giant sign when you enter the building with the words "No 'them'" in a circle and a line drawn through it.

BLOOM: What is the message of your new book?

Randy Lewis: It’s the story of how I got involved with disability hiring, why we did it as a company and how we were able to go from essentially zero to 10 per cent of the workforce in five years.

The reason I wrote it was one, so that people could understand that people with disabilities could work effectively and have a positive impact on the work environment. It wasn’t just as good, it was better.

And two, that we all tend to underestimate our power to effect change and that everyone, I think, at their core really does want to change the world. As leaders, if we can tap into that in ourselves, that we want to do good things, we can unleash that in others.

BLOOM: How did you get the idea to hire people with disabilities?

Randy Lewis: I have a son with autism and so watching him grow up, I shared the same dream of other parents like me—to live one day longer than my child because you wonder what will happen to them after you’re gone. We’d go to these IEP conferences at school and I realized disability plays no favourites. It strikes traditional and non-traditional families, rich and poor. I got to thinking: 'What is going to happen to all of these other kids and parents?' If we’re hiring over here at Walgreen and there’s a need over there, why can’t we bring those two worlds together?

BLOOM: How did you sell the idea to the company?

Randy Lewis:
I said we’re not going to lower any of our performance standards, we’re a business, not a charity, and if it didn’t work out, we wouldn’t do it. What I discovered as an employer was we had lots of invisible walls around us—systems that we thought were giving us the best performers, but weren’t.

We were screening out a whole class of people who would never get through the Internet job application, or interview well, or look and talk like everyone else, or have all of their limbs. That was a huge turning point.

BLOOM: How did you get buy-in from existing staff?

Randy Lewis: We'd had some experience with enclaves, where we contract with another company and they bring people in with disabilities, typically to do janitorial or ancillary tasks, and they supervise them. All our employees liked it, management liked it. Here we are helping these people, but they weren't integrated.

One day a team member told the group about how important this work was to her and she showed a picture of these people with disabilities. They were all wearing the same shirts and she was in the picture with them, also wearing the same shirt. She made a point of telling me she was not 'one of them,' but their sponsor. I knew that was a problem. We had not embraced people with disabilities as equals.

After that we hired a young man with Asperger's to work on the line at one of our centres and he did a fantastic job. We had two women he worked with and I talked to them and asked 'How are things working with Chuck? Are people accepting him?' They said: 'If they don't, they have to deal with us,' and I thought now we're making progress.

Each of our buildings has different coloured plastic totes for shipping, and in this building they were grey. A couple of times every day a purple tote would get mixed up and come down the line and Chuck loved those purple totes. He would dance every time he saw one. At one point we said 'Is that appropriate behaviour for the workplace?' But then we got to thinking 'Why not?' We'd rather have him dancing than complaining.

So we started learning about inclusion and we were about to build a new generation of building. We had experience with the enclaves, we knew Chuck could work on the line, so I thought maybe this is time. Why don't we develop our automation with people with disabilities in mind.

BLOOM: How did you decide on what proportion of staff would have disabilities?

Randy Lewis: When it came time to plan a new-generation distribution centre 10 years ago to handle our growing business, I believed it was an opportunity to 'go big' with disability hiring in an intentional manner. We were designing new equipment and we thought let's make it effective for people with disabilities if we can do that with negligible cost.

We talked to a fellow who worked with people with autism. We knew we couldn't afford a lot of job coaches and we asked him how many typically abled people would we initially need to provide support to a person with autism, thinking the person with autism might be the most difficult to employ. He said maybe two people. So we decided one-third of the workforce is going to be a person with a disability.

No one had ever done this anywhere in the world in a production environment. If we don't get orders shipped accurately we're not in business. This was a clear and elevating goal. We would hire 200 people with disabilities out of 600 to staff this new-generation centre we were building in South Carolina.

Two years later we opened up a similar centre with the same goals near Hartford, Conn.

BLOOM: What did you learn?

Randy Lewis: We discovered that people with disabilities could do all of the jobs, not just the jobs we'd designed the equipment in mind for. The automation we put in helped everyone, not just the people with disabilities. We brought in managers from our other centres to show them that it wasn't about the automation. That they didn't have to have specialized equipment that we had in the new centre to be successful at this. They liked what they saw and were ready to try it out in their less automated buildings. And I asked them to set a clear and elevating goal and they said let's hire 1,000 people by the year 2010.

BLOOM: Why were the staff with disabilities so effective?

Randy Lewis: We underestimated them, it's as simple as that. When we measure performance, the people with disabilities perform as well statistically as the others. The standard is not that they have to be Superman or Jackie Robinson. But the employees with disabilities also have fewer accidents, better retention, less absenteeism and they make people better managers and create greater teamwork.

BLOOM: So it sounds like overall there were definite advantages.

Randy Lewis: Yes.

BLOOM: Did the culture in these environments change for the better.

Randy Lewis: I asked people in our South Carolina and Connecticut centres who'd worked in other buildings without disability hiring, 'How did you rank engagement when you were there?' And they'd say probably a seven or eight out of 10. Then I asked them to compare that level of engagement with what they saw in the building they were in now. They said the eight would drop to a two.

'We didn't know what engagement was until we got here,' they said. 'We didn't know what teamwork was like.'

If you ask managers in the buildings with a large percentage of people with disabilities what is their number one job, they'll say 'My job is to make everybody who works for me successful.' When you have that kind of attitude the workforce notices and they respond to it.

BLOOM: How has the experience created better managers?

Randy Lewis: We've learned to 'manage in the grey' and by that I mean we want to manage with values or principles, not rules. People like rules, bosses like rules because they're easier to administer. For some of our supervisors that was uncomfortable at first, but I said if it's just about administering rules I can get my own children to come in and run this place. We asked people to look at the purpose of rules and apply what were the principles of the rule, rather than the rule itself. This caused us to look at a lot of our policies.

We changed the way we hire and recruit because a lot of people can't get through the Internet application system or need help applying. If there's a discipline problem, we let the employee bring in a parent or advocate because we want to make sure they understand and we understand.

Sometimes we make exceptions to a rule. For example, I remember a situation where a young man became frustrated because he had to work overtime and he was going to miss a doctor's appointment. He punched a computer screen and broke it.

The rule is that if you break something intentionally, you're fired forever and forever banned from the company. We got to thinking: 'Is that a good rule? Is there ever an exception?' Even Aristotle way back when noted that human behaviour is not mathematics, it's not finite reasoning, there are exceptions to all things.

So we went back and had to look at that policy as it applied to all of our staff. We needed a framework. And it was: 'Is there an extenuating circumstance? Is there a reason to expect the person won't do it again? And what's the likelihood that they'll be able to find employment elsewhere?' We don't decide in favour of the employee in every case, but we did in that one.

Our managers say this idea of managing in the grey is the most powerful thing that's made them better managers.

BLOOM: It sounds like they feel empowered in a new way.

Randy Lewis: The change is huge. They talk about managing with love, a word we've never used in the workplace.

A few years back we had the president of a Best Buy division come through for a tour and afterwards he sat down with our managers to ask questions. 'I've heard all the good things about this place,' he said. 'What's a bad day like?'

And essentially the supervisors said: 'A bad day is when I come in with my own problems and I'm not focused on my staff and the work. You know that saying 'You come home and you want to kick the dog?' If I do that at work my staff will either shut down or start acting out or they'll confront me and tell me why I'm being a jerk. Or they'll come up and give me a hug. One thing I've learned is that when I'm here, it's about them, not me.'

BLOOM: How costly is it to train people with disabilities?

Randy Lewis: It was negligible. What we did was go out in the community and get partners. We demanded that disability agencies in the community form a coalition and work together with us. We built a training room in a community-rented space and for a year the community screened and trained people and taught them how to use our equipment. Now we have training rooms within our buildings.

Typically a new employee has 60 days' probation and by 60 days they have to be up to full productivity. We anticipated that people with disabilities might need longer because out training might not be right for everyone. So we created an alternative pipeline into the company. If you have a disability and want to come in that route you are paid as a temporary employee, with no benefits, and you can stay in that group as long as you're progressing towards full productivity. It might take 60 days or less, some may take 90. One person took a year. Once they're at full productivity they're hired as permanent staff.

BLOOM: In a news story I saw you talked about an accommodation where you name, as well as number, stations. Can you explain that?

Randy Lewis: For someone who has difficulty with numbers and directions, we've named stations as a group of animals in a zoo. So we might say 'You'll be working at rhinoceros in zoo.' We also have a race-cart alley and a hamburger alley. So perhaps you'll be working at the hot dog station in hamburger alley. These are simple things that help some people. Most of our accommodations cost less than $20 and most are paper and pencil.

BLOOM: What's been the greatest challenge in implementing this model?

Randy Lewis: The biggest impediment to overcome is fear.

BLOOM: How did you manage that?

Randy Lewis: To outsiders in the organization I said: 'We're here to make money, we're here to make it work. If people with disabilities can't to the job, they won't be working here.'

To those who reported to me I said 'Our standard is to give it our very best, so if it doesn't work, we can tell the world this is not possible. Give it your very best, and if it doesn't work, we know no one else could have done it better than us.' That was very freeing for everyone.

We also said 'We don't have all the answers. There are going to be problems we can't anticipate, so let's not worry about those. If you anticipate a problem, let's figure out a way around it. And you can't bring a What if? unless you've thought of a way around it. Most of the problems we anticipated never happened.'

BLOOM: What was a problem you didn't anticipate?

Randy Lewis: We thought all of our systems were great for getting us the best employees. We thought we'd build this and as soon as we put an ad in the paper all of the people with disabilities would come flocking to us. We didn't think about the fact that this is a group that doesn't read the paper every morning looking for places to work. It's not a group that trusts employers. It's a group that may have difficulty in even getting to the job site for the interview. We didn't realize we had so many invisible walls.

It took some work for us to say gee whiz, we're going to have to do something different. We worked with community agencies. We've had to teach them to understand our jobs and send us people that they believe will be successful.

BLOOM: What are common myths about hiring people with disabilities?

Randy Lewis: That they can't do the job, it's going to cost me more to make them effective and when they fail I will get punished.

BLOOM: Has Walgreen hired people who were considered unemployable?

Randy Lewis: Lots of them. For most of them it's their first job.

BLOOM: What does the average person get paid?

Randy Lewis: They make close to US$30,000 on the production line.

BLOOM: I heard that in a couple of your distribution centres as many as half of all employees have disabilities.

Randy Lewis: In our original centre in South Carolina, 40 per cent have disabilities. In our newer centre in Connecticut, 50 per cent have disabilities. In 2011 we achieved our goal of having 10 per cent of the workforce made up by people with disabilities. Before I retired 14 months ago, the centre managers from across the country met and set a new goal to reach 20 per cent.

BLOOM: What kind of impact do these jobs have on people with disabilities?

Randy Lewis: For many a world of possibility, opportunity and responsibility is opened to them for the first time. They have relationships they've never had before. They have money they never had before. And there are some unanticipated consequences, too. For instance, some become like teenagers: they stay up too late at night playing video games because they can afford them now. It's a whole village of people working together that's expanded everyone's way of thinking.

BLOOM: What advice would you give a parent who's concerned that their child won't be able to get a job due to disabilities?

Randy Lewis: The words we hear as parents of a child with a disability are 'always' and 'never.' We have found that that's not necessarily true. I was in Canada yesterday with a new organization of employers called SensAbility. They're going to look for employers in Canada who will help spread this model. Ontario's Lieutenant Governor David Onley has taken employers to visit our site and is very active in helping Canada advance on this front. So I'm very hopeful about Canada.

BLOOM: What about your son. What are his dreams?

Randy Lewis: I wish I knew. I wish he could tell me. He's 25 and he works about 12 hours a week in a Walgreens store. There's a Michigan company building a distribution centre about an hour from here in Chicago and the owner has talked about how one day he wants Austin to be their employee. So we're going to go up and see it.

BLOOM: What impact do you hope your book will have?

Randy Lewis: I hope people read it and believe it's possible and try it. There are enough models out there to do it. We make only three cents on the dollar, so our margins are razor thin. If Walgreen could do it—and we didn't have any models to work from—anyone can do it.

Tuesday, March 18, 2014

'Dr. Darcy' unites research and frontline care

Dr. Darcy Fehlings is a senior clinician-scientist who heads Holland Bloorview’s child development program and University of Toronto’s division of developmental pediatrics, the program that trains doctors who specialize in working with children with disabilities.

Darcy has conducted groundbreaking research in the use of Botox to reduce muscle tightness in children with cerebral palsy and is the incoming president of the American Academy of Cerebral Palsy and Developmental Medicine.

One of her latest studies looks at how stationary exercise bikes and a virtual video game can motivate kids with cerebral palsy to exercise at home while having fun and making friends (see photo above). Darcy’s worked at Holland Bloorview for 25 years. 

BLOOM: Why did you choose children’s rehab as a field?

Darcy Fehlings: When I was finishing medical school I was torn between whether I should go into pediatrics or psychiatry. I wanted to work with children but I liked not only the health issues, but the psychosocial aspects. I was accepted into both, but I wanted to ensure I had a strong medical training and I really liked the idea of using a holistic approach to wellness when working with children and their families. So after I did my pediatrics training I applied and got into the developmental pediatrics program.

BLOOM: Has your thinking about disability changed over the years?

Darcy Fehlings: To me the disability has become more invisible and I see the individual rather than the disability first.

BLOOM: Have you had any ‘aha’ moments?

Darcy Fehlings: One was related to my kids. I was giving a talk in the evening for parents of children with Duchenne muscular dystrophy and my husband was away, so I had to bring my three kids with me. My oldest daughter was in Grade 6 and old enough to integrate into the inpatient recreational program. This was her first exposure to really interacting with kids with disabilities and when she came out she said: ‘Mom! That was eye-opening. They’re just like any other kid.’ That was an aha-moment for me in terms of the power of integration.

BLOOM: What are some of the challenging things about this field?

Darcy Fehlings: I have to say that I absolutely love what I do. I love it. I know that some children are struggling and some families are struggling, but as a health-care professional I really value being in a position where I can hopefully intervene or help the child and family. I have a lot of empathy, but it isn’t a negative emotion. I feel like I may have a suggested solution to help the challenging situation so that a potential negative can be flipped into a positive. 

There are times when, for multiple reasons, there hasn’t been that positive effect. But it’s just my personality that I’m very accepting of what the children and families bring to the table. Even if they’re not as compliant with what I’m suggesting, I don’t carry a negative feeling. I understand that they have a million things they’re trying to do, and deal with, at the same time.

Another potential challenge is keeping up with the pace of scientific discovery, particularly at a molecular or basic level. However, this can also be exciting. You can put a childhood disability lens on these discoveries and see which ones might eventually make an impact clinically for a child.

BLOOM: If you could tell parents one thing, what would it be?

Darcy Fehlings: I think families of children with cerebral palsy often get stuck in this concept of ‘I have to do these intense therapy routines’ with my child. I wish that I could help families move towards appreciating how important it is for their child to participate in fun activities and focus on wellness rather than just focusing on repetitive motor drills to try to obtain function. I think focusing on socialization and leisure is super important. Often families say ‘I wish I’d figured that out earlier.’

BLOOM: If you could give yourself advice when you first started, what would it be?

Darcy Fehlings: I did give myself advice and it was: “Push yourself really hard. Try really hard. Learn the evidence, so you can be as helpful as possible. Take it really seriously because it’s a very serious responsibility.”

BLOOM: How do you do that and balance your own life?

Darcy Fehlings: When my children were younger I worked a four-day week for many years and that was really helpful in having a work-life balance. Right now, quoting Sheryl Sandberg, I say ‘yes’ to choosing both: Leaning in to life and leaning in to work.

BLOOM: If there was something you could change about our current health system for children with disabilities, what would it be?

Darcy Fehlings: I think families would appreciate it if there was more coordination and connection between the various service and health-care providers. I’d also like Holland Bloorview to continue to develop our focus on participation and wellness. We’re leading the way in this area but I’d like to see us develop it in an even bigger way.

I’d love for our practices to become even more evidence-informed, so we’re standardizing care pathways so that not only can we do a great job at Holland Bloorview, but if another clinician is trying to provide a similar service elsewhere, they can access that information. We need to do a better job of creating evidence around the service and care we provide.

Finally, I’d like to do a better job of empowering families with good information.

BLOOM: How can we do that?

Darcy Fehlings: We need to develop an information hub that is providing relevant, understandable information to parents. It’s time intensive to create a system like this and keep it updated. We have to work together as a collective group of clinicians around the world to pull and share information so we don’t each have to create it.

BLOOM: How has your practice changed over the years?

Darcy Fehlings: I’ve always been a bit of a softy in terms of wanting to have a holistic approach to the child within the family and the family within the community. I think as I’ve progressed I’ve developed efficiencies in assessments so that it doesn’t take me four hours to have that holistic approach. I think I’m efficient in my interactions with families and can quickly get to a point where they feel like I’m being helpful.

BLOOM: How do you deliver hard news to parents?

Darcy Fehlings: I try to deal with it head on in a manner that hopefully they can hear and listen to. I try to present the information so that they’re the ones moving the decisions forward, but that I’ve presented it in a way that includes some hope, so that they don’t close off and stop listening.

BLOOM: What are your hopes for research?

Darcy Fehlings: I’m involved in two translational cerebral palsy neuroscience networks and I hope that we can make a discovery of a treatment that would help the neurologic condition of cerebral palsy. For example, we’re trying to explore how constraint therapy might stimulate stem cells that are already in the brain.

My other dream is to get our ‘exergaming’ project into children’s homes. We’d like to see research interventions move into clinical applications like this. Exergaming is where children with cerebral palsy ride a stationary bike to power a virtual game they play with each other. Youth can pedal and play together, have fun, boost their cardio fitness and decrease their sedentary behaviour.

BLOOM: What are your goals clinically?

Darcy Fehlings: I’m going to put a lot of energy into helping to develop evidence-informed pathways so that all clinicians can strive to be great. You take all of the available evidence and pair that with expert opinion to develop flow pathways for care. These are one-page pathways so clinicians who are really busy don’t have to read 40 articles—it’s been synthesized for them.

BLOOM: As a parent I would have loved to have a coach who follows me over time, to help me stay encouraged and on top of the many things I’m working on with my child. What do you think of my coach idea?

Darcy Fehlings: I really believe in continuity of care. You meet a child and family at one time, but you’re going to become a much better clinician if you follow that child over time. If you miss something you will learn that you missed it, and that will allow you to get better. It’s very important to families when they see the same team over time and can develop a relationship with them. This is where the coach idea could fit in as a lifespan perspective is very important. Some of that coaching takes place with our nurses.

BLOOM: What are you most proud of in your work here?

Darcy Fehlings: When I came here we didn’t have a ‘care-by-parent’ unit where the parent could stay in the room with the child. And we didn’t have a day program. We were a hospital. I’d like to think that I had a role in pushing those things forward 25 years ago. I really love the work I did in the neuromuscular program when it was transferred here from SickKids. I was leading this great team and we had to take it from an orthopedically-focused scoliosis management program to a holistic program.

Overall I’m proud of my efforts to integrate research and practice together to drive excellence in care.

Wednesday, March 12, 2014

A magical bond

Many of you will remember our interview with filmmaker Kelly O'Brien, whose film Softening documents life with her son Teddy, now 7, who was born with brain damage and a grim prognosis. Yesterday a condensed version of Softening, which focuses on the relationship between Teddy (left) and his sister Emma (right), appeared in the New York Times.

An eye-opening piece about what a brother means to his sister, and it has little to do with disability. Important watch for medical professionals and those outside the disability community.

Tuesday, March 11, 2014

Denied child care, this mom opens her own

By Julie Brocklehurst

Brennen was my first and only child, and like any expectant mother, I had dreams of giving birth to a healthy, happy baby.

I had a normal pregnancy and delivery, and I was sent home with a healthy baby, but it wasn’t long before I knew that something was not quite right. Brennen would cry and cry without end, and this went on for months. I knew that something was wrong, but I didn’t know to what extent.

When he was about five months old, we were sent to neurology, cardiology, genetics, ophthalmology and audiology, among other specialties. It was a whirlwind of tests and probes. I couldn’t believe what was happening.

I knew that Brennen was behind on his milestones (he hadn’t met any), and I knew something wasn’t right, but I wasn’t prepared for the words I was about to hear: Words like “serious,” “urgent” and “critical.”

My perfect little baby boy had something seriously wrong with him and there was nothing I could do about it. I felt helpless. I knew they were testing for conditions that I couldn’t even bring myself to contemplate. We were referred to physiotherapy, occupational therapy and speech therapy, all to begin immediately.

When Brennen was eight months old, after blood test upon blood test had come back negative, we were given the diagnosis of cerebral palsy. As difficult as that was to hear, it was almost a relief. They say the scariest thing in life is the unknown, and now at least we knew what we were dealing with. It wasn’t going to go away. It wasn’t going to get better, but it wasn’t going to get worse.

I went through a whirlwind of emotions, mourning the tragedy of what had happened to my perfect unborn baby, and the loss of the child that I thought I was going to have.

I thought I was alone in the world, and that I would never have any sort of “normal” life again. When I think back on those early days, I wish I could go back and tell myself that it really was going to be okay. When I look at our life now, and look at my sweet nine-year-old son, I could not imagine life without him.

Brennen is a happy little boy who loves life and spreads that love with everyone who knows him. He brings us so much joy every day and has taught me more about life than I ever could have imagined. I never could have fathomed that in such a short time, Brennen would change my world in the best way possible.

I stayed home with Brennen for the first two years of his life. Then I went to work part-time at a daycare centre that had several children with special needs who needed one-on-one support. Given my early-childhood education and qualification as “Brennen’s Mom,” I was well suited for the job.

I had no intention of sending Brennen to daycare, and had never even entertained the notion of child care for him, until I got in there and realized that maybe he would benefit from being around other children. The centre had a wonderful program, and they encouraged me to put him on the list for admission. I worked at that centre for a full year before Brennen started, and he was there from the age of three until he started school at age six.

It was at that time that I realized we were in a challenging situation. Brennen was in Kindergarten in the mornings, which ended at 11:30. What was he to do in the afternoons? The daycare didn’t offer an after-school program, and I didn’t feel comfortable sending him to another large child care centre that wasn’t accustomed to having children with complex needs.

I heard of something called Family Child Care, which offered care to a small group of children in a provider’s home, and that sounded like a lovely option! I called the licensing agency, and they gave me the names and contact information of two homes in my area that had a space available.

I was slightly apprehensive. I found it difficult to even think about someone I didn’t know looking after my child who needed so much special attention. But I called both providers with the hopes that one of them would welcome my child into their home.

The phone calls—so similar they could have been recordings—went as poorly as I could have ever imagined. Both providers confirmed that yes, they did have a space available. But without even discussing Brennen or his disability, both declined as soon as I said that he was in a wheelchair. They would not accept him.

I was dumbfounded, horrified and devastated. How could they turn away my child so quickly, and so coldly? Did this happen to other parents like me? How often? What were people like us supposed to do? Thinking of the few children that we knew who had similar needs and diagnoses, I wondered how many other mothers’ hearts had been broken like mine.

The lack of options for my child and for my family did not sit well with me! So it wasn’t long before I decided that I had to do something about it. There was going to be a place for children like mine. A place where they were welcomed and loved and made to feel appreciated!

Aware that the early years are the most important learning years in a child’s life, I was motivated with a great sense of urgency to establish a much-needed program for children like Brennen.

My partner Andrew and I created Little Tulips Family Child Care
with the following philosophy:

“We believe that quality child care promotes the development of all children, including those with complex or high needs. It is important that all children have the opportunity to attend and participate in a quality child care program. We believe that children can thrive in a small home environment that is stimulating, nurturing and adapted to suit their individual needs.

“Our goal is to provide a supportive environment where children can build positive relationships and develop feelings of competence in their cognitive, language, motor, social and self-help skills. Play-based learning is an essential part of children’s development, and we encourage this through a variety of age-appropriate and developmentally appropriate activities, suited to the needs of the individual child.”

Little Tulips is open to ALL children, but we cater to children with physical and mental challenges causing a developmental delay in one or more areas. We are wheelchair-accessible and wheelchair-friendly! We work closely with the rehabilitation team at the Janeway Child Health Centre in St. John’s Nfld. and frequently have therapists and specialists come in to work with our children and help us develop specific programs tailored to each child.

We work with speech therapists, physiotherapists, occupational therapists, early-intervention specialists, behaviour management folks and others to provide a multi-disciplinary approach that enables each child to reach their potential.

We have had tremendous success and positive feedback. We provide our children with unique opportunities and experiences that they might not have access to elsewhere. For example, we partnered with Project Grace—a music program with a social justice imperative—to deliver an Experiencing Music program to children with challenging needs.

We frequently have special guests and visitors come to our home: therapy dogs, story-tellers and local musicians and performers. Recently the father of one our children came in to play us songs on his double bass (see photos below).Our children are entertained and stimulated in all areas, and their work is disguised as play.

In the short time that we’ve been open, we have witnessed our children achieve many milestones in their lives, including learning to crawl, walk, communicate and gain independence. It is a tremendously rewarding role that we have as educators and child-care providers. We see so much potential in all of our children and we believe that with the right support, each and every child with special needs will flourish.

One of the hurdles we now face is the need to expand our operation. Because we’re limited to such a small group in our home setting, we’ve had to turn away many families because we’re full to capacity.

My heart breaks every time I have to tell a parent that we don’t have a space to offer their child. I see myself in their shoes, just a few short years ago. I wonder how they’re coping and where they’ll go from here. I feel that I need to do something more and we do have plans to expand to serve a greater number of children.

Little Tulips is the type of child care we wish our son could have attended, and because of that we feel compelled to ensure that our children receive only the best that we have to offer. We're committed to working with families to achieve the same goals and dreams that they have for their children, and we're thankful for the opportunity to work with each and every one of them.

It feels wonderful to be able to provide such a rich, nurturing environment to the children who need it most.

Follow Julie Brocklehurst on her blog Tiptoeing Through. Read about why she chose the name Little Tulips.

Thursday, March 6, 2014

When science doesn't have all the answers

By Louise Kinross

It’s on the list.

My son’s rare genetic deletion is on the list of disorders identified by microarray analysis of a fetus’s DNA

It was a surprise to find it there, but given the dizzying speed of prenatal testing advances, it shouldn't have been.

It makes me sad to think that the lives of children like my son are being targeted for termination. Is this a step forward? Something that will make the world a better place?

We can identify more and more genetic disorders, but can we use this information in an enlightened way to help families make decisions about raising or terminating children with disabilities?

Microarray analysis is a new technique that compares a fetus’s DNA with a normal DNA, identifying genetic duplications or deletions too small to be detected by karyotyping (the microscopic analysis of chromosomes that picks up larger changes like those seen in Down syndrome).

That's why when I had an amniocentesis over 20 years ago I was told the child I was carrying was "normal," when in fact he had a genetic change too subtle to be detected.

I've written about that experienceHow an elevated blood test led us to a genetics counselling appointment where there was no counselling: no discussion about our values, what parenting meant to us, or how we felt about screening for and aborting a fetus with genetic disabilities. Other than a recounting of the dry statistics (that I had a 1 in 200 chance of having a child with Down syndrome and a 1 in 200 chance of miscarrying as a result of the amnio), there was no discussion at all.

When I couldn't make a decision, an obstetrician was sent in to berate me, referring to a child with Down syndrome as "a burden you'll live with for the rest of your life."

In a 2012 study published in the New England Journal of Medicine, the new microarray testing picked up the kind of genetic change my son has in six per cent of fetal samples with normal karyotypes from women who were referred when a structural problem was seen on ultrasound, and in 1.7 per cent of samples with normal karyotypes from mothers who were referred because they were older or had had a positive screening test.

Microarray currently requires fetal cells that are taken through amniocentesis or chorionic villus sampling, so it comes with a risk of miscarriage.

But the researchers look to a non-invasive blood test being developed, with hopes that "every woman who wishes will be offered microarray, so that she can have as complete information as possible about her pregnancy," says lead investigator Dr. Ronald J. Wapner in a related news release. Dr. Wapner is professor and vice chairman for research at the Department of Obstetrics and Gynecology at Columbia University Medical Center.

Who can argue with complete information?

But is it complete?

What kind of counselling is offered today to the parents of a fetus that is diagnosed with a micro-deletion or micro-duplication? Even less is known about some of these conditions because they're just being named.

Is a medical description of the condition paired with information from families raising children with the same disorder? Or affected adults? 

In my son's condition, there's huge variation in how children are affected and microarray can't predict whether the symptoms will be mild or severe. And what about the human side of the equation, the joy that a child, regardless of ability, brings to a family. That can't be conveyed by a professional who has no firsthand experience with disability, and may well view disability as a medical failure.

"Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child," writes Far From The Tree author Andrew Solomon in this New Yorker piece. "It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement."

Parents-to-be often "confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life)," he writes. "Further, they confuse their own discomfort with their child’s."

Yesterday one of our readers sent me a study called Posttraumatic growth in parents and pediatric patients in the Journal of Palliative Medicine. The study is a review of 26 journal papers on positive psychological change that results in parents or children after a child's traumatic medical event (including cancer, prematurity, and acquired and congenital disability).

"Posttraumatic growth is the positive psychological change that results from a struggle through a life-altering experience" and may include "greater appreciation of life, improved relationships, greater personal strength, recognition of new possibilities in one's life course, spiritual or religious growth, and reconstruction of a positive body image."

The authors conclude that posttraumatic growth is an important, little studied and poorly understood phenomenon affecting children with serious pediatric illness and their families. They suggest research is needed on how professionals can positively intervene "to facilitate families' movement away from dysfunction or deterioration and toward growth." 

I include this paper because it demonstrates that traumatic experiences that shake up our worldview are not wholly negative. Life is more complicated than that.

The technical side of prenatal testing is the easy part. It's how we use that information to benefit families and the culture as a whole that's complex.

A paper on the use of microarray in prenatal diagnosis by the American Congress of Obstetricians and Gynecologists (ACOG) raises some important points.

"The potential for complex results and detection of clinically uncertain findings identified by [microarray testing] can result in substantial patient anxiety," write the authors. 

They note that women in the New England Journal of Medicine study who received abnormal results “reported a lack of good understanding of the potential for uncertain results and noted feeling great distress on receiving such information and then needing to decide how to proceed with the pregnancy.”

The ACOG recommends that women understand that prenatal microarray "will not identify all genetic disorders." 

This is a point true of amniocentesis, but when I was counselled, no one ever explained it to me. My understanding was that a clear amnio result meant a genetically-intact child. After my son was born, I stopped counting the doctors who exclaimed, in disbelief: "But you had a normal amniocentesis!"

Further, the ACOG notes that "diseases may be identified for which the clinical presentation may vary greatly and range from mild to severe. It may not be possible to predict what the outcome will be in a given patient." 

So how will identifying these problems prenatally help?

We are way better able to counsel parents about what [development issues] would mean for the child," Dr. Wapner says in this CNN story. "We can modify the course and improve the outcome for the child. 

I hate to be cynical, but there aren't any fetal interventions that can improve my son's condition, or many of those I see on the list.

It would be useful to know what happened next in the cases of the women in the study whose fetus's received diagnoses. Did any of them benefit from fetal interventions that changed their outcome? Were the fetuses carried to term followed to see how they and their families fared? How many were terminated? 

Oddly, the paper doesn't mention anything about termination.

How come there is no research on the "after" side of the prenatal-testing equation?

For example, how do parents rate the counselling they received? How could it be improved? Did parents feel equally supported by professionals in choosing to carry a child to term or terminate the child? What supports are provided to parents who terminate and what supports are provided to parents who don't?

We know that 85 per cent of women who receive a prenatal diagnosis for Down syndrome choose abortion.

Do they feel it's a choice, or a social responsibility?

This study in the Journal of Applied Social Psychology looks at how people judge women who carry a baby with an identified disability to term or refuse prenatal testing.

The survey asked 281 staff at a Canadian university and 341 Canadian doctors who work in obstetrics to rate three scenarios in which a woman's child is born with a disability. Both the university community and the doctors rated the woman who chose not to abort her disabled fetus and the woman who refused prenatal testing as more responsible, more to blame, less deserving of sympathy, and less deserving of social and financial support for their child's care than a woman who wasn't offered testing.

"This examination is of pragmatic relevance because of a growing sentiment that prenatal testing can and should be used to meet public economic goals by reducing the financial burden that disability places on the medical and social welfare systems, and that women who do not use it to prevent the birth of a disabled child should be held financially or legally accountable," writes the author.

I'm grateful that microarray testing didn't exist when I was pregnant with my son. I didn't have the life experience to make an informed choice, and the genetic clinic didn't provide me with any family stories to give me a picture of what real life could be like. Most importantly, I couldn't predict my ability to cope with my son's disabilities and to parent a child who's different. 

I believe the front-end of prenatal testing is proceeding at a pace way beyond our ability to understand its ramifications. 

It's how we support families after the diagnosis that needs study.

Science must be used to our benefit, not just because the knowledge and technology exist.