Connection with son eases one mom's focus on 'recovery'

By D. Christine Brown

Today is a bittersweet anniversary for us. Two years ago our healthy son Lucas ended up in the intensive-care unit. He was two. He had a very high fever and prolonged seizures, out of the blue. A few days later, he suffered severe brain inflammation. After spending four months in hospital recovering, he’s continued to progress.

Lucas is relearning to talk and is physically active. But since his illness his development has been delayed and last year he was diagnosed with autism. 

The past two years have been a difficult journey for our family. As parents, we’ve focused almost solely on Lucas' recovery. In a sense this assumes a correction of the past—undoing what happened and getting “back on track."

But recently some external events have made me realize that this approach, while useful, is somewhat of an illusion. It won’t serve us going forward. 

First, the New York Times Motherlode blog featured a piece about another mother's experience with brain injury in her son. It sent shivers up my spine and contributed to my shift in thinking.
 

Like us, this mom had a 2-year-old son with high fever and seizures who suffered brain inflammation (within a month of our son’s illness!). But her family’s outcome is very different from ours.

Her son has severe and complex physical disabilities going forward. My heart ached as I pondered how different her focus has been over the past two years, accepting these changes and moving on in her new reality which is less about recovery and more about adaptation.

Then in the news there was this story of horrendous ignorance: a neighbour of a 13-year-old autistic boy sent a letter of hatred to his grandmother, telling her to euthanize the boy because his vocalizations are a nuisance to the neighbourhood.

BLOOM covers this topic often: how people see their own vulnerabilities in the differences of others and it can be too scary to accept.

There’s a song on one of Lucas’ CDs that we’ve all heard: “Whoopee ti yi yo, git along little doggies, It’s your misfortune and none of my own…” The line from this old cowboy tune really struck a chord in me. My husband says “what a mean song” (he really loves dogs) but that’s reality. It’s why the neighbour of the boy with autism, who signed the letter as a mother herself, didn’t stop herself from delivering that letter: It’s your misfortune and none of my own. 

By suggesting the boy was less than human, she had cut herself off from her own humanity.

In thinking about that hate letter, I realized that in describing our son’s experience as one of “recovery,” we were in a way separating ourselves from what we were too frightened to accept. When we talk about recovery, we imply that Lucas’ challenges are temporary, distinguishing him from children like the boy in the New York Times story, who has lifelong disabilities.

But the truth is that we don’t know how Lucas will be affected over time.
 

Sometimes, especially when tired, Lucas can act out. Outsiders may judge his behaviour as hyperactive, dangerous, defiant, disobedient, naughty, unruly, uncontrollable and stemming from a lack of discipline on our part.

In fact, it’s serving a sensory need. But it’s easier for people to make assumptions than to try to understand why a child like ours behaves the way he does.

We feel the eyes of judgment when our son "misbehaves" in public, and even when we're alone at home—even though I don't consider any of his behaviour misbehaving at all. In my mind he’s an innocent and playful child!

Brenda Rothman's recent piece in the Huffington Post fueled this idea, offering me hope and inspiration:

She writes: You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You'll need more patience and time. Your child will have intense emotions and needs. But he'll also have intense curiosity, drive, determination, desire, persistence and individuality. What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.

Based on this reasoning, if we just worked hard enough at finding the supports Lucas needed, everything would be okay with our son.

We chose to dive in full hilt. We’ve done occupational therapy, sensory integration, speech and language therapy, movement therapies, naturopathic protocols, therapeutic recreation and more.

We also stumbled across this less popular, but what we feel is most relevant, intervention for children with autism called the Floortime model.

We’ve worked our butts off at getting Lucas the right supports. We haven’t slept, had a social life, or had time to get anything done for ourselves.

My career has been put on hold and we've spent every waking moment making sure that Lucas is safe and stimulated and interacted with.

We’ve chosen to feel small because we depend on our parents financially to get through this phase of our life.

Although every day of our life with him has been more difficult than anything we’ve ever experienced, it’s also been more rewarding, with glorious and tremendously joyful interactions with our precious son. And he's still adorable, energetic, demanding, sweet, gentle, loving, affectionate, bright and curious. It’s been worth every minute.

But now it’s time for us to move forward and forget about what happened to our son as being a misfortune at all. It’s something that happened. Things happen.

I liked what KJ Dell’Antonia wrote in this Motherlode post: “…Some part of us just can’t go to that place where we know that some things in life have to be lived through instead of conquered.”

Having to accept what happened to our son is accepting that we are all vulnerable and impermanent. It eats at our deepest human need—to survive. Anything can happen to us at any moment. We are all fragile and vulnerable to misfortune at every moment. But we can also enjoy connecting with each other at every moment, and this gives our lives great meaning and joy.

Beyond survival, feeling connected with others is every human being’s greatest and deepest need. We yearn to be understood; to feel important and worthy of attention and love among those we interact with. Feeling connected gives us self-confidence and a sense of purpose.

The main therapy we’re choosing for Lucas, the Floortime approach, is all about connecting with our son by following his emotions and interests to facilitate his development. The underlying assumption is that every child has the desire to interact.

In our case, our desire to connect with our son has begun to outweigh our need for “recovery,” or our need to appease people who judge his sometimes disruptive behaviour.

Our focus on recovery was a coping mechanism, one that we are slowly letting go.  

Our hope is that we can continue to provide an environment for Lucas where he’s unconditionally loved and accepted for who he is, and that he’ll always have rich opportunities for connecting with others.

Our psychological journey has been a slow and long road, just like our son’s recovering brain. Both are leading to brighter pastures, vulnerable and impermanent as we are.

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The therapy fund

We don't talk enough about the mental health challenges of raising children with disabilities. 

There are many studies showing higher rates of depression and anxiety in parents like us.

Earlier this year, former Canadian Olympian rowing champion Silken Laumann talked at a BLOOM speaker night about creating a new blended family that includes her teen stepdaughter with severe autism.

The brilliant thing about Silken was that she was totally candid about what it was like to step in to this special-needs parenting role with no experience. 

"In so many ways it’s been more wonderful than my wildest expectations, and also more heart wrenching and difficult than I ever imagined," she said.

Of the challenges, she spoke of times when her daughter could be violent and her concern for the physical safety of herself, the other children, and respite workers. "We haven't had a caregiver yet who has been physically hurt and who stays," she said.

She talked about the importance of parents taking care of themselves, and about a therapy fund. Like saving for your child's education, Silken puts money away for her own mental-health counselling, as well as what her children may need in future.

Not everyone can afford private therapy, obviously. But in openly talking about how much she valued and needed counselling, Silken normalized the idea that parents like us need extra mental-health help along the way. If we're aware of that, we can look, and advocate, for more publicly-funded sources.

About a year ago I started a therapy fund. But though I put this money in a separate account, it was soon gobbled up by other "pressing" needs.

I've had lots of therapy in the past—both before and after Ben was born. And part of me feels like at this point I shouldn't need it anymore. 

But then I think about how much it benefits me—being able to talk about myself with someone who's focused just on me, and who understands the unique stresses of having a child with disability who's entering adulthood but on a decidely different path than his peers.

So I created a new fund. And when my hubby e-mailed me yesterday to say it seemed ridiculous to have a couple thousand dollars sitting in a "therapy" account when we were so strapped for cash, I responded: "But I NEED it."

The other night I was at a friend's house and we had a laugh over the fact that my friend, and her daughter with a disability, and myself all see the same therapist. 

And the longer I'm in this special-needs world and talking to parents I realize how common it is for parents like us to need therapy or medication, or both, to work through our emotions, keep depression at bay, and continue to feel good about ourselves and our children.

Yet we often don't talk about it. We don't tell parents earlier on in the journey how important our emotional wellbeing is and how it needs to be actively  protected because we're uniquely vulnerable.

I came across a wonderful 2013 report about an Australian initiative to produce a resource that will make parents like us aware of how to take care of our mental health. 

Enhancing support for the mental health of parents and carers of children with disability includes an overview of the research to date, and the results of interviews conducted with parents who were asked what they'd like to see in a brochure or booklet.

The researchers were only able to come up with one existing document online targeted to the mental health of parents of disabled children.

They also cite research showing that "a substantial proportion of parents with poor subjective wellbeing consider their health to be of low priority or are reluctant to use services for themselves."

We know we need to take care of ourselves. But too often our health falls off the radar when we're juggling too many balls related to our child's extra needs.

Yesterday I learned that a well-known American blogger writing about her daughter with severe autism was charged with trying to kill her daughter in an attempted murder-suicide. She and her daughter were found in a smoke-filled van suffering from carbon-monoxide poisoning. 

The mom had advocated to get her daughter residential treatment for violent outbursts that had sent the mom to hospital twice with injuries.

The daughter had recently returned home and her mom learned she was not going to be allowed to attend a local school program, as had been planned. On her last blog, she writes about "a severe case of battle fatigue."

Which made me think about something called compassion fatigue, which is studied in relation to health professionals.

In scholarly articles, compassion fatigue is described as the natural stress that results from caring for and wanting to help someone who's traumatized or suffering. For example, it's seen in rehab and cancer nurses who care for clients in pain and witih life-altering trauma.

A professional with compassion fatigue becomes less empathetic to patients because of repeated exposure to their suffering. In Taber's Cylopedic Medical dictionary it's defined as "cynicism, emotional exhaustion, or self-centredness occuring in ahealth-care professional previously dedicated to his or her work and clients."

While parents aren't usually caring for multiple children who are in pain or traumatized, the way a doctor or nurse would, they may experience repeated exposure to their one child's trauma, and to their perceived inability to remedy it.

While numerous studies point to higher rates of stress and depression in parents like us, there doesn't seem to be much study or evidence on the best ways to mitigate it. 

Let me know if you've come across something innovative in this area! Louise

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Zookeeper in training

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What works in the clinic may not work in the real world

By Steve Ryan

Most people assume that technology is a game-changer for children with disabilities. Using it helps kids to walk faster, wheel further and communicate better. You can see the difference it makes. It levels the playing field. It turns disability into ability.

Or does it?

Why is one in four assistive devices abandoned by families?

Why do 50 per cent of Canadian parents with children who lack functional speech say that none of their child’s communication technology needs are met and a further 20 per cent have only some of these needs met?

Why do more than 3,000 American children who use wheelchairs and walkers have serious falls that result in trips to hospital emergency departments each year?

We do not know.

What we do know is that assistive technology can be pricey. This is partly because many devices must be custom-made or individually adapted by clinical teams. It’s also because the market for these products is small and spread out geographically.

We are fortunate to live in Canada. Our healthcare system provides universal coverage for medically necessary services based on need rather than ability to pay. Provinces must meet the conditions set out under the Canada Health Act to get an annual share of $30 billion dollars in federal funding for their health insurance plans.

Yet the Act is silent on what services are medically necessary. That’s why provinces vary widely on which technologies they fund.

Ontario’s coverage is substantial compared to many. The province funds about 75 per cent of most “essential” assistive devices for everyday activities. Wheelchairs, walkers, speech devices, powered prosthetic hands, and ankle-foot orthoses are among 8,000 devices co-funded by the Ontario Ministry of Health and Long-Term Care through its Assistive Devices Program.

The program requires rehab professionals with special training to assess device need, discuss options with children and families and prescribe equipment. Families must buy or lease their devices from registered dealers to get provincial funding. Technology teams must also teach children and their families how to use some devices.

With all of these checks and balances, isn’t it reasonable for families to expect that these essential technologies will work?

As a research engineer at Holland Bloorview in the ‘80s and ‘90s, I teamed with therapists, families, and manufacturers to develop better wheelchair seating, custom car seats, and special toilet seats for kids who needed support to sit. 

Under controlled conditions, we showed that kids who used our seating devices sat straighter and wheeled a chair better. We crash tested our special car seats to prove they were as safe to use as car seats sold in Toys-R-Us. We demonstrated that kids could sit on (and use) our toilet seat product on their own without being held by Mom or Dad. 

We assumed that this meant that our devices worked—and that they would work the same way in the real world, in family’s homes and communities.

We think differently now. We recognize that benefits we observed don’t necessarily translate into lasting changes in how a child functions in the real world.

The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s framework for thinking about measuring function: a child’s ability to do and take part in everyday activities. The ICF views function as an outcome of the interaction between the child and his environment. It considers technology as an environmental resource that can influence a child’s everyday activities.

So we think more now about how devices help kids and families do the things they want to do. Our teams consider how and why technology may help kids develop and their families live better.

We are developing much better ways to measure functioning that may be affected by devices. We ask families questions that go beyond “How much do you like the device?” We focus questions on activities that may change after getting new or different technology. 

For example, we want to learn how communicating with friends and asking an unfamiliar person for directions changes after getting a new communication device. Or whether, with a specially-designed seat, a child can now sit at the table to eat dinner with the rest of the family.

Of course we realize that we need to give children time to learn how to use a device and for families to work it into daily routines to really understand its influence. Important life changes may take days, weeks, or months to see. Sometimes changes may not happen. And sometimes no change is a good thing. For example, technology may enable a child with a degenerative condition to maintain an ability he or she would otherwise lose.

We know that products and services may affect children and families in different ways. Our teams observe and ask questions many times before and after kids get their devices because how they use them may change with time and among family members. The tricky part is being able to understand how much change is due to the child’s device, something else we measured, or something we may have missed. 

For example, consider a mother with young children in a small apartment. She may decide that even though a special seat that allows her child to sit independently on the toilet works, the product is too bulky to store when not used. She’d rather hold her child on the toilet.

Or perhaps stress in the family—a sibling birth or a return to full-time work—means that parents can’t follow through in supporting their child’s use of a communication device. So technology that seemed to support a child’s communication needs loses its impact at home.

Sometimes parents working on many goals with their child that involve technology and therapy simply can't do everything at once. 

This is why we need to ask lots of different questions and use different strategies to study the impact of technology.

Exploring the difference it makes will give researchers, service teams, manufacturers, policy makers and families clues about how, when, and what devices should be used, recommended, developed and funded.

Most important, understanding functional outcomes will help us to predict when technology that works well in the clinic will work well in real life for children and families. 

Steve Ryan is a senior scientist in the Bloorview Research Institute.

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Hanging around

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Poor health care a factor in early deaths

A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier.

The confidential inquiry, led by a senior research fellow at the University of Bristol, also found that people with intellectual disability are two and a half times more likely than the average person to die before age 50.

The researchers compared the deaths of people with intellectual disability with a group of people without disabilities who died at a similar age and of a similar cause.

They found over a third of the deaths of people with intellectual disabilities could have been avoided with good health care—more than three times the proportion avoidable in the general population.

"Significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated," lead investigator Pauline Heslop says. "The inquiry found all aspects of the provision and co-ordination of care for people with learning disabilities was worse than the group without learning disabilities."

Writing at Conversation, a news website sourced by researchers, Heslop provides two examples:

James, who was taken to [emergency] after he collapsed with bleeding from his nose and mouth. Hospital staff were convinced he had only had a seizure despite his family saying they hadn't seen this happen. But an MRI scan later showed a haemorrhage. His family said that he had been in pain from 7 a.m. to 5 p.m. because they hadn't been believed.

Rachel developed a cough that gradually got worse. A general practitioner prescribed antibiotics but despite further requests for help, her mother was told Rachel would be better by Sunday. By then her condition had worsened. She was taken to hospital where she still didn't receive appropriate care. She died of aspiration pneumonia.

In addition to problems with care, "families of people with learning disabilities more commonly felt that professionals didn't listen to them," she writes. Of the deaths studied, 30 per cent of the people had limited verbal communication and 22 per cent did not speak at all.

At the time of their deaths, 64 per cent of the people lived in residential care with 24-hour paid carer support.

As I read this report I couldn't help recalling a chilling case I'd read about in The Night Shift by emergency room Dr. Brian Goldman, host of CBC Radio's White Coat, Black Coat.

Dr. Goldman shares this story of the emergency room misdiagnosis of a man with autism by Dr. Bruce Campana at Vancouver General Hospital.

"Some poor guy came in and he was autistic and about 30 years old. He was brought in screaming and violent, and he would try to reach out and grab people. The care woman came and said, 'Look, he always gets like this when he is constipated. Can you just give him an enema and get him out of here?' We gave him an enema. The guy was still screaming and yelling. 

"The care people said, 'This always happens. Can we just take him home?' So he went home. I came in for the next shift. You know that feeling when somebody looks up and they say those fateful words: 'Do you remember that patient you saw last night? He's dead.' 

"He, of course, had a ruptured appendix."

Dr. Goldman says he asked Dr. Jerome Groopman, a Harvard professor and the author of How Doctors Think, to analyze the mistakes made by Dr. Campana and his colleagues in this case.

"These are some of the hardest patients to take care of: people who are mentally ill, people who have developmental disorders like autism, and so on. 

"First, let's start with what is called a framing error. So this 30-year-old autistic man is put in the frame of 'constipation:' he's often constipated. We also have an availability error, meaning that what first came to mind is the diagnosis that occurred in the past. He's been constipated in the past. This is the same pattern so it's the same thing. That's what is most available in your mind. That also causes a cascade of what is called diagnosis momentum— it's like a boulder rolling down a hill gathering force. This is what it is; this is what it has been in the past. 

"There is also what is called an attribution error, and that is on the emotional side. We tend to find difficult patients [such as] people who we can't connect with emotionally, like autistic people or mentally ill people, difficult to handle. We don't like them often when we are physicians because they make our lives much more difficult. It is difficult to get a history from this man. So we are more apt to quickly attribute whatever is going on to this stereotype that we have, which is a flailing autistic man, and we want to get him out of the emergency department as quickly as possible. All of those factors in thinking and feeling coalesced to cause this tragedy."

I'd like to see a North American study that mirrors the one done in Europe on early preventable death in people with intellectual disability.

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A walk

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