Southern Health fined $1.8 million in death of Sara Ryan's son

By Louise Kinross

Yesterday Southern Health in Britain was fined just over $1.8 million dollars for the preventable death of Connor Sparrowhawk, an 18-year-old with autism and seizures who drowned alone in a bath in a National Health Services treatment unit in 2013. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable.

Connor's mother Sara Ryan (above left) had warned staff that Connor appeared to have bitten his tongue and was disoriented during a visit, suggesting a seizure. But he was allowed to bathe unsupervised behind a locked door, where he drowned.

Because of Sara's tenacity, more than 1,000 unexpected deaths of other Southern Health patients with intellectual disabilities or mental illness, that hadn't been investigated, were uncovered.

BLOOM interviewed Sara in 2015: Son's death sparks a search for justice.   

In her statement from the family yesterday, Sara wrote:

"No one should die a preventable death in the care of the state. Learning disabled people should not die on average 20 years before their non-disabled peers. Families should not have to fight for answers and accountability."

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. Over a third of the deaths could have been prevented with good health care. 

Photo below of Connor with his sister Rosie.

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Cartoonist draws about his life as Poppy's dad

By Louise Kinross

In 2015, British Telegraph cartoonist Bob Moran illustrated a heartfelt memoir about his daughter's birth with a brain injury. Called Father's Days, it contrasts how he imagined his new role as dad would go with the terror of seeing his newborn hooked up to machines and tubes. "I just didn't feel strong enough," he says, as an illustration of him lying prone on the floor after being sent home from the hospital appears.

The piece is packed with heartbreak and fear. That one line—"I just didn't feel strong enough"—I'm sure has been said, or felt, by every parent of a child born critically ill or with disabilities. 

Poppy, Bob's daughter, is now three years old and diagnosed with cerebral palsy and epilepsy. Earlier this week Bob released a new video about the family's first trip, a cruise around the Mediterranean: Father's Days At Sea. It's a lovely look at how Bob's fears about Poppy's safety on the ship give way to seeing the holiday through her "cheeky, confident, life-loving" eyes. It, too, is a must-see.

Bob has agreed to do an interview with BLOOM, so stay tuned to read about what he's learned through illustrating his parenting experiences. 

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Changing the stories we tell about disability and families

By Louise Kinross

Recently BLOOM reported on research about the role of hope and the invisibility of dads in children’s rehab. This was produced by Parenting Matters, a team funded by the Canadian Institutes of Health Research to study what it means to parent kids with disabilities like Down syndrome, autism or cerebral palsy. Scientist Lucy Lach, an associate professor in the School of Social Work at McGill University, is the co-principal investigator of Parenting Matters. She also has a unique connection to families at Holland Bloorview and has raised two children with significant learning disabilities. She’s working with Dr. Peter Rosenbaum from McMaster University and Dafna Kohen from Statistics Canada. BLOOM interviewed her about her work.

BLOOM: In 1980 you worked as a summer student at what was then the Ontario Crippled Children’s Centre. Was that your first exposure to disability?

Lucy Lach: Yes, I worked in accounts payable and purchasing. I had had one singular experience with a student in a wheelchair at my high school, but during that summer I got to see and know kids with a variety of disabilities who were receiving services there. I was 20 years of age and was completely taken with the culture of the institution. I don’t think I realized it at the time, but in retrospect it is here that I learned how special the culture of pediatric centres is.

BLOOM: What was that like?

Lucy Lach: I became caught up in the culture of what is now Holland Bloorview—in how positive it was and how the kids were treated by staff and how special the staff were. It was a wonderful place to be as an emerging adult. During that period I began doing some volunteer work at the Bloorview Children’s Hospital at Leslie and Sheppard.

BLOOM: What did you do?

Lucy Lach: I just hung out. I was there to be a peer. I played with the younger kids and took the older ones outside to engage with the environment. This allowed me to begin to get to know these young people whose ways of communicating and thinking were different from what I had experienced. Although these lives were viewed as tragic and unfortunate, I learned that there was a different story to be told. These children had a liveliness and a beauty that I had not been exposed to or fully appreciated before.

BLOOM: As a social worker at SickKids, you later ran support groups for parents of children with intractable epilepsy at Bloorview. What did you learn from that?

Lucy Lach: How our systems are failing them. I learned about what the kids’ and parents’ struggles were in day-to-day life: trying to balance work and appointments and ensuring their kids were safe, and managing these very unpredictable seizures, sometimes at night or at school.

I learned how the complexity of what they went through on a daily basis was missing in the literature and in the snapshot of time we had with them in the clinic. When they came to see the neurologist they would have 15 minutes at most.

The support groups helped me to get at that deep experience and to ask questions of them when they were in clinic in a different way—to elicit stories not just of despair or challenges, but also of how well they were managing. And it made me feel humble as a practitioner to realize that I didn’t always know how I could be helpful to people who were referred to me. I learned to feel okay approaching parents by saying: ‘I don’t know how I can be helpful, but help me understand what concerns you the most, and what you would most like to talk to me about.’

BLOOM: Working with this population must have been difficult. 

Lucy Lach: It’s so very hard for them, that’s absolutely true. But you know what? I also heard over and over again how they figured that out, how they managed it. So the story about grief and sorrow was also a story about amazing accomplishments, abilities and triumphs. In fact, I’m more prone to tell you about the latter. These are parents who didn’t allow the unpredictability of these events to rule their family life. They incorporated them somehow.

One of the most important things was to engage a community of peers. In the best-case scenario, when a child had uncontrollable seizures, one of the factors that allowed parents to say ‘Okay, you can do this’ was if their child had friends who knew what to do in the event of a seizure to ensure they were safe.

Safety was a primary concern. Sometimes professionals involved would make judgmental comments about how overprotective and indulgent the parents were. That drove me nuts.

Often school was a huge issue. Parents were told the student could come back when their seizures were under control, but the seizures would never be under control. So a significant part of my role was advocacy to help school understand that sometimes you just had to manage the seizures and the behaviour as opposed to eliminating them.

BLOOM: What were the rewards of this work?

Lucy Lach: The rewards were daily because I was there so long that I got to see kids grow and to see parents grow to become amazing and effective advocates.

BLOOM: Why did you decide to move into the research world?

Lucy Lach: At the time I was working in the epilepsy clinic, the research was filled with assumptions about families’ experiences of their child. It was mostly very negative, as it continues to be today. If you skew research questions so that they enquire exclusively about negative experiences, you will inevitably obtain answers that contribute to a story about trauma, negativity, pathology and distress. But if you ask parents if having a child with a disability was, in any way, growth-enhancing, some will tell you you’re ‘off your rocker’ while others will thank you for the question.

What I’m trying to say is that research contributes to a story about families and this story is a social construction of some reality that ends up being what people believe as being ‘true’ about themselves. If you document the complexity of the story, or a different dimension, the plot thickens.

BLOOM: When you first got involved in research it was about outcomes for kids following epilepsy surgery, right?

Lucy Lach: Yes. Although the neurosurgeons and neurologists were extremely hopeful about the promise of this surgery, our clinical experience was slightly different. The procedure was successful in improving seizure control, but families didn’t see the changes in quality of life they had been led to expect: they didn’t see changes in their child’s cognitive skills or behaviour. So my colleagues and I designed a rigorous study to generate findings about outcomes we could be more confident in.

This meant we could share fully with parents, before they consented to surgery, that this procedure will not significantly alter your child’s cognitive skills and behaviour one to two years out. We were happy to be able to be as truthful and honest as we could during the consent procedure and that consent now involved full disclosure.

BLOOM: That must have been incredibly disappointing for families.

Lucy Lach: Absolutely. Parents would come back after the surgery and say ‘now can you do some surgery on my child’s behaviour? Can you fix that?’ There, the idea of ‘managing’ as opposed to ‘fixing’ was really important. Maybe we can’t fix it, but we can help by better articulating and adjusting your expectations so that you can better manage your reactions.

BLOOM: Why is the Parenting Matters research needed?

Lucy Lach: The question that drove that whole enterprise for me was another taken-for-granted assumption in clinical practice about overprotective parenting and whether it was damaging for kids with neuro-disabilities. There were, and are, assumptions about how terrible it is that parents don’t allow their child with disabilities to do certain things, and if only they would stop hovering, then their child would be okay. My hunch was that this was a complete oversimplification of the complexity that families faced.

So Parenting Matters has generated quantitative and qualitative data that has begun to make the narrative about these children and families more complex and stir up a bit of controversy about previous assumptions.

BLOOM: What are the main Parenting Matters projects?

Lucy Lach: One is a systematic review of the literature on parenting of children with neuro-disabilities. A second is analysis of a large Canadian population-based dataset on parenting and rates of separation and divorce among parents of children with these disabilities.

The third is an environmental scan of policies and programs for families, where we provide links to information on services, respite care and tax forms by province.

The fourth project is a clinical study of 263 Canadian children with various disabilities. The data was collected at Holland Bloorview, as well as in Montreal, Calgary and Edmonton. Parents completed measures about the complexity of their child’s disability, their behaviour, quality of life, family environment, co-parenting relationship and marital system, and adequacy of social support. That’s where we also looked at overprotective parenting and quality of life.

BLOOM: Do you have results from the large dataset?

Lucy Lach: Yes. We learned that parents who have a child with a neuro-disability don’t differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child. The downside is that they experience themselves as more ineffective as a parent.

BLOOM: Why do parents of kids with neuro-disabilities view themselves as less effective?

Lucy Lach: That's a really great question. That measure, of effectiveness, also taps into how negative parents feel about their parenting relationship so I think it has to do with expectations they have of themselves and of their child.

BLOOM: Do you mean that parents of kids with disabilities may be great parents, but they may have unrealistic expectations about their child that make them feel inadequate? Or, do you think that in general our culture’s tendency to value achieving certain milestones influences how parents feel when their child doesn’t?

Lucy Lach: All of the above. It’s a classic psychological explanation versus a sociological explanation and both can be valid. There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there’s the actual transaction that happens on the ground. It’s not either/or—one informs the other.

BLOOM: I think we can do a whole story on that! When will you have results from the clinical study?

Lucy Lach: We have two doctoral dissertations. One tests the role that adequacy of social support for the child and family plays in a child’s quality of life. The other examines the role that parenting attributions and behaviours play in families’ experiencing their child’s disability as having a positive or negative impact. We found in the first that when a parent feels like their child’s and family’s support needs are more adequately met, their child’s life quality is higher, even in the face of high levels of neurological complexity.  Next on my agenda is to examine the role that ‘overprotective’ parenting plays in child outcomes.

BLOOM: You have teenage twins with significant learning disabilities. Did your earlier work in the field of disability help you navigate some of the issues your own children faced?

Lucy Lach: Well, it was certainly hard to be on the receiving end of schools that were being judgmental and difficult with my kids and particularly with my son. Sometimes educators had already made assumptions about my son—they’d diagnosed him before anyone had actually administered a test. But absolutely, my research informs my parenting and my parenting informs my research.

BLOOM: What have you learned from raising your kids with learning disabilities?

Lucy Lach: That they’re not like me—they have other strengths that I don’t have. They are both socially gifted and can talk to anyone. As a child I loved to read and learn and study and my children are not like that. They are happiest when they are interacting socially. I get that, but as a mother it has been a bit of a struggle to not apply my standard to them.

BLOOM: I feel that we still devalue people who think differently—particularly in academic settings. Scientist Barbara Gibson here talks about the moral hierarchies of movement, and how we influence children’s development because walking is seen as the only acceptable way to get around. But I think we have moral hierarchies about intelligence. We make it so obvious that we value academic intelligence, yet we have many clients who have learning and intellectual disabilities. How do we convey the value of different ways of thinking? Could there even be advantages to different ways of thinking?

Lucy Lach: We definitely need to valorize different ways of knowing. There’s an emerging literature on different types of intelligence that is slowly making its way into the mainstream.

BLOOM: Have your thoughts on intelligence changed over the years?

Lucy Lach: Absolutely! I had no choice because my default position is to recognize strengths and abilities as opposed to inabilities. That’s how I operate. When I describe my kids as socially sophisticated I mean they have amazing social skills and intelligence and if they can capitalize on that in some way, in a pro-social way, then they’re going to be okay. Yet my kids have had no exposure to help them recognize the importance of their social intelligence. In fact, if anything, at times it has been devalued and mistrusted. What about work in the trades? What about sales? What about services? They’ve had no exposure to that. It’s really frustrating because choice matters.

BLOOM: I find it interesting that there are a number of studies about self-reported quality of life in people with Down syndrome, and typically the participants rate their lives very highly. But when you mention this to people who study quality of life, they discount the studies.

Lucy Lach: I find that fascinating. Some of the quality of life research I’ve been involved in subsequent to epilepsy surgery has looked at child and parent ratings of the child’s quality of life and the child inevitably rates their quality of life higher. Quality of life literature is a ‘dog’s breakfast’ quite frankly. So when you say ‘quality of life’ and another person says it, you may both be drawing on completely different assumptions and dimensions.

BLOOM: Knowing that parents of kids with disabilities are at greater risk of mental health problems, is there anything specific you do to take care of yourself or build your resilience?

Lucy Lach: Ha! For years I just ignored it. Now I recognize that between working long hours and my kids and husband and hitting age 56 this year, your health can go a bit sideways. I’m paying more attention to how much I’m walking, what I eat, and whether I go for regular checkups. And I do take vitamin supplements.

BLOOM: If you could change one thing in our health or social supports for families of kids with disabilities, what would it be?

Lucy Lach: We have navigation services spread across different sectors and institutions. Yet families experience feeling lost and uncertain. They don’t know what to access, where to access it, and how. We need to focus our efforts across diagnostic silos to make sure that every parent knows what they and their child are eligible for and to give them the tools to make informed choices.

We also need to be doing more to create opportunities for parents to support parents. There are things parents can say to one another that a professional could never say to them. There’s a street ‘cred’ there. In my next phase of research I’ll be designing peer support groups online—for parents across disabilities, not just within a disability group, who have children at similar developmental stages. I’m currently running focus groups to figure out what they need, how they would like it delivered, and by whom. No sense in doing anything without first hearing from parents.

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Suicide, epilepsy drive early deaths in people with autism

By Louise Kinross

People with autism die decades earlier than the general population according to a disturbing study from Sweden.

The study, published in the British Journal of Psychiatry, found people with autism die on average 18 years earlier than peers without the condition. The study showed people with autism and intellectual disability die a shocking 30 years earlier, at about age 39.

For people with autism alone, the main cause of death was suicide. For people with autism and intellectual disability, the leading cause was epilepsy.

Swedish researchers analyzed data from two Swedish population-based registers. They included over 27,000 people with autism, of whom about 6,400 had intellectual disability, and more than 2.6 million people without autism matched for age, gender and county of residence.

On average, people with autism have a 2.5 times higher risk of premature death. Adults with autism and no intellectual disability were nine times more likely than peers to end their lives, with women being at particular risk.

I was unable to get a copy of the full study, but news reports say the underlying factors contributing to premature death may include restricted diet, less exercise, and increased social isolation, anxiety and depression. In addition, people with autism may struggle to explain their health symptoms, causing a delay in diagnosis and treatment.

This mirrors a British inquiry in 2013 that found women with intellectual disability (but not autism) died 20 years earlier on average than the general population and men with developmental disability (but not autism) died 13 years earlier.

British researchers said more than a third of the deaths studied 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 non-profit Autistica in the UK announced that it will raise $10 million to better understand the reasons for the decades-long gap in life span.

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NHS failed to probe unexpected deaths in disabled patients

By Louise Kinross

Earlier this year I hung up the phone with Sara Ryan, mom to Connor Sparrowhawk (above right) an 18-year-old with autism and an intellectual disability who drowned after having a seizure in a bath in a National Health Services mental health unit in Oxfordshire, England in 2013.

I felt sick.

Despite telling hospital staff that her son had epilepsy and was having seizures as a patient, he was left unsupervised in the bath. Two weeks later, Southern Health Trust wrote in board minutes that a “service user” had died of natural causes.

Sara, a senior researcher and autism specialist at Oxford University, demanded an independent investigation which found the death was preventable and neglect was a contributing factor.

Last week, British Health Secretary Jeremy Hunt said the government was “profoundly shocked” by a report that found less than 1 per cent of 337 unexpected deaths of people with intellectual disability between April 2011 and March 2015 were investigated by Southern Health Trust. The average age at death was 56, seven years younger than the national average. Half of the deaths occurred in acute-care settings.

This was part of a larger report looking at 1,454 unexpected deaths of patients with mental health problems or intellectual disability. It was only undertaken due to immense advocacy by Sara Ryan and her family and friends (including a sophisticated social media campaign called @JusticeforLB. Connor's nickname was "laughing boy").

Today the report was formally released.

In 238 deaths of people with intellectual disability, the most common reasons for premature death were: “delays or problems with diagnosis or treatment and problems identifying needs and providing appropriate care in response to changing needs.”

The authors say the nature of the unexpected deaths of people with intellectual disability echoed cases identified in a 2007 Mencap report called Death By Indifference.

“It was disappointing to see the Death by Indifference findings reflected in the cohort of death reports we reviewed,” the authors say. They note that the issues they identified mirrored the “institutional discrimination” against people with intellectual disabilities and their families found in the Mencap report.

“…the real, underlying cause of many deaths of people with a learning disability ‘is the widespread ignorance and indifference throughout our healthcare services towards people with a learning disability,’” they quote from the Mencap report. This poor care stems from “ignorance and prejudice.”

Here’s one example in the new report: “A service user was seen by the GP but care home staff took him to [emergency]. He was turned away from [emergency] and sent back to the care home. The service user was admitted shortly after and died of a terminal illness. It was reported by Trust staff that no painkillers were given on the acute ward as the service user did not appear in pain. There was no further investigation or escalation by the Trust which, whilst not directly responsible, did not act on the incident report.”

It’s interesting to note that while less than 1 per cent of unexpected deaths in patients with learning disabilities were investigated, 30 per cent of deaths in mental health patients were.

In looking at all investigations, families were left out of the process 64 per cent of the time.

Key findings included “a lack of leadership, focus and sufficient time spent in the Trust on carefully reporting and investigating unexpected deaths” and an inability to demonstrate how they had learned from the deaths and improved care as a result. The quality of reports was poor and careless. In one case a teenage son was referred to in the same report with three different names.

And in related news about the care of children and adults with intellectual disabilities, consider this:

-A do-not-resuscitate order was placed in the medical file of a British man with Down syndrome, with no consultation with his family, with these reasons listed: “Down syndrome, unable to swallow (tube) fed, bed bound, learning difficulties.” The hospital has apologized for breaching the man’s human rights.

-A 17-year-old with autism dies after being restrained in an unlicensed Oshawa, Ont. group home. From a related Toronto Star story: “It is stunning to me how these children... are rendered invisible while they are alive and invisible in their death,” said Irwin Elman, Ontario’s independent advocate for children and youth. Elman was unaware of Justin’s death until informed by the Star.” In another story, we learn that Elman has just won the right to be promptly informed when children (with or without disabilities) die in the care of the children's aid. It's taken seven years of advocacy.

-a horrifying report on the daily use of physical restraints and two preventable deaths, in an American for-profit residential program operating in four states, for youth with severe developmental disabilities, including autism. “Many complaints have centred around the company’s aggressive use of mechanical restraints, such as leather cuffs, chairs with straps, and a ‘wrap mat’ akin to a full-body straight-jacket. Such tactics, records show, have resulted in broken arms, collarbones and jaws, knocked-out teeth and cuts needing stitches.” Most recently a 14-year-old girl died there after being tied to a bed, and then a chair, while vomiting as much as 30 times all night.

These are all stories that crossed my desk in the last week. They're not anomalies. 

Read our BLOOM interview earlier this year with Sara Ryan.

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Hope that high-fat diet will tame a little girl's seizures

By Stephanie Ly

It was a sunny and glorious Muskoka morning when our daughter, Pepper, had her first seizure. It wasn’t the first time I’d seen a seizure, but it was alarming to watch my nine-month, otherwise perfectly healthy baby girl, drop and seize.

We called 911 and had her taken to the nearest hospital. Since it was her first seizure, she was otherwise healthy and her vital signs all checked out as normal, we were sent home without further treatment.

Two seizures later that same day, she was treated with a low dose of her first anti-convulsant medication. So began a series of hospital visits and medication trials for Pepper worthy of an 80-year-old in poor health.

My only knowledge of the medication Pepper was first prescribed was that it was used to treat dogs with seizure disorders. No joke. I had a friend who treated his dog with the same medication after the dog suffered a stroke and began to have seizures. So why were we treating our daughter with this medication? And why, when this drug stopped working, was she prescribed another anti-convulsant? And then, yet another? And after a year, why were we still manipulating her doses with little effect? Why? Why? Why?

Epilepsy, or rather intractable epilepsy, as Pepper is known to have, is a condition where treatment fails to control seizures. Since she was nine months old, Pepper, who is about to turn three, has experienced, at most, a month’s repose from seizure activity.

Despite pharmaceutical intervention, she continues to have seizures regularly and we don’t know why. Pepper doesn’t appear, from numerous genetic tests, to have any genetic basis for her condition. Nor does she appear to have any physical cause for her seizures. She just has them. Like that. And like that, she takes medication, which doesn’t control her seizures.

The medical community doesn’t always discuss with you all the pros and cons of the medication they prescribe, though they attempt full disclosure based on their awareness. Instead, their mandate is to treat the symptoms in the most effective and, to their knowledge, safe manner available. Sometimes, in times of crisis, you are left wondering, where are my options?

First Do No Harm is a movie about a mother trying to save her son with intractable seizures. The concept of “first do no harm”—a fundamental medical precept by Hippocrates—is important to our family because for two years Pepper was given an old seizure medicine known to cause developmental delay, without doctors telling us of this connection.

Our daughter has developmental delay, so that feels like a failure on our part.

In First Do No Harm, the child is finally treated using the ketogenic diet, which is a natural alternative to medicine that we learned about at the Hospital for Sick Children.

The ketogenic diet alters the body’s metabolism to create changes in brain chemistry that prevent seizures in some people.

Pepper was admitted to Sick Kids in late May of this year to begin her own journey on the ketogenic diet. The diet itself is a low carbohydrate, high-fat diet in which the body converts fat into energy, rather than using glucose, in a process called ketosis. Ketosis is the same process that kicks in when someone is fasting, and fasting has been a traditional seizure treatment for centuries.

There are a few variations of this diet used to treat epilepsy. Pepper is following the MCT Diet, which uses Medium Chain Triglyceride oil as one of the flash points for initiating ketosis. It is a strict diet and it takes patience, vigilance and strength. Good thing we have those—in spades.

Since Pepper started the ketogenic diet, we have had major adjustments in our household. Time management has been a huge shift. Meals must be prepared in advance and with precision (we weigh and measure to the very last point of a gram). The meals are then packed with care so as not to expose the oils to light, or to spoil the fresh foods that Pepper goes to preschool with every day.

Her meals are administered, much like medication, at certain times of the day, with even spaces in between. She’s given plenty of water to keep her kidneys clean and stone-free. Her ketone levels are monitored twice daily, her blood glucose levels are checked occasionally and she is always being watched for seizures, digestive ailments, fatigue or discomfort. Since day one of her first seizure she has not gone without someone’s eyes on her, and this diet hasn't changed that aspect of our lives.

What has changed, however, is that we've seen cognitive improvement! Since the second day of her admission to hospital, Pepper went from being mostly unresponsive and in her own little world to interactive and engaged. It was something immediate and so noticeable. It gave us hope, and it still does. As for seizure control, we are still in the process of determining the diet’s efficacy and will be for a few months.

We’ve definitely seen a reduction in seizures, and Pepper has recently gone three weeks without a seizure, which has been remarkable and promising. We have hope, something we were slowly losing over time.

A typical day on the ketogenic diet starts the night before, or sometimes many nights before. Fresh food is always prepared in advance, with very few ingredients and simple foods. Pepper does not get any processed food, with the exception of a specialized drink to raise her ketones. Otherwise, she is getting a protein, a carbohydrate, a vegetable and/or a fruit and a fat at breakfast, lunch and dinner. Each of these food categories is weighed according to her meal allowance.

Preparing meals two days in advance and having things pre-chopped helps a lot, as does buying frozen fruits and veggies (it’s easier to improvise when you have a freezer full of fruits and veggies).

Pepper’s combined meals total approximately 900 calories per day. This is within range for her age. The meal sizes however, appear so small. For example, at lunch, she might get roughly the size of a tablespoon of rice, a tablespoon of chicken, a tablespoon of peas, a pad of butter and four grapes. To think that I could almost polish off a whole roast chicken to myself is eye-opening.

It’s also not easy. Most children Pepper’s age would turn their cute pouty faces away from such food restrictions. This is where her good nature and developmental delay are an advantage. She doesn’t have the cognitive awareness to protest, or to expect anything different. She just accepts what she is given.

We on the other hand, have had to adjust to many things. Our shopping list, of course, our eating schedule and finally and most challenging of them all, our routine. Finding the time after a long day’s work to prepare everything has been a challenge. But we do it.

Just as Pepper continues to smile with each meal, and with each newly acquired skill, and another day passes where she doesn’t have a seizure, and we all finally have a restful night, we adapt.

We accept that our daughter has a seizure disorder that may or may not be treated. We live day to day with the uncertainty of Pepper’s seizures. We have good days and horrible days. It’s a constant up and down of emotion.

Our biggest coping mechanism is Pepper’s smile and her laughter. It’s amazing how when I look into her eyes, and connect with her, I forget the worries outside. She has a way of healing our fear and disappointment. I can shut out the negative energy when I focus on the positive she gives me.

Follow Pepper’s story at UnSeizeTheDay. 

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'I love the boy to pieces and I'm grief-stricken'

Here's a sneak peek at part of an interview we're running in the summer issue of BLOOM. It's with acclaimed British director Stephen Unwin.

Unwin is directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. The play, at the Liverpool Playhouse and then the Rose Theatre in London, strikes close to home because Stephen’s son Joey, 16 (above left, with sister Bea), has severe epilepsy, an intellectual disability, and no speech.

BLOOM: What is A Day in the Death of Joe Egg about?

Stephen Unwin: It’s a brilliant black comedy about how a married couple deals with being parents of a child who is profoundly disabled—both physically and intellectually.

Little Josephine is 11 and has cerebral palsy, sits in a wheelchair, has no speech, very limited capacity and suffers from epilepsy. It’s a weird comedy, which was such a hit in the 1960s, that describes the full range of emotions of parents and families of profoundly disabled children.

It ranges from jokes to despair to hard work to fantasy, to the parents having differences of views, to guilt, and the perspectives of other people. The grandmother goes around saying: ‘Wouldn’t she be lovely if she was running about?’ And somehow Peter Nichols makes sense of this extraordinary comedy.

It’s not funny in a simplistic way, but in a way that makes you howl. One of the things I like about the play is that it’s not moralistically or idealistically saying ‘We are all so happy to have these disabled children.’ Nor is it saying ‘It’s only a tragedy.’ The mother gains meaning through being Joe’s mother.

BLOOM: I’ve used black humour to cope with extreme situations. But will an audience with no experience with disability understand the humour in the same way you or I would?

Stephen Unwin: None of the actors have experience parenting disabled kids, so one of the things I had to do is show them how the child is just a child.

People tend to have two responses to serious disability: one is terror and the other is optimistic reverence, and you and I know that neither is helpful.

The only answer is reality: ‘Yea, this is what the kid is like, and this is what caring is like.’ It’s nothing to be scared about, but I don’t buy the idea that ‘This is a blessing from God.’ That’s bullshit. Nor is it a punishment. I think it’s just part of reality and the only answer is acknowledging the reality.

BLOOM: What kind of things did you explain to the actors about parenting disabled children?

Stephen Unwin: The child in the play goes to a day centre and the mom discovers that they haven’t changed her diaper all day. I was trying to explain what that’s like to the actress who plays the mom. She has young children, she knows what it’s like to change nappies on a one-year-old, but working out whether an 11-year-old has wet themselves? It’s quite hard physical work. But it’s what you do every day of your life and you’re not squeamish about it.

I’d explain what it’s like to give epilepsy medicine to a child who’s shaking, and you go ‘Shit, it’s gone all over the place,’ and you start again.

I try to show people what they take for granted. For example, when Joe has a seizure in the play they would all jump up to deal with it. No, I said, it’s not like that. This has been happening every day for 11 years, so it’s a different rhythm.

I remind actors of the reality of the situation because I have a parallel experience. But it’s not about my Joey. My Joey runs around and bounces and in many ways is healthy. It’s about Peter Nichols’ child with profound cerebral palsy, who died.

BLOOM: In The Guardian you wrote about your son’s 16th birthday—cake, candles, presents and early to bed—which isn’t what you’d expect with a typical teenager. But do you think we project our own sorrow on to our kids—our own wish that life was different for them—when from their perspective, they’re experiencing something in a rich way?

Stephen Unwin: I think that’s right. But I don’t want to have my grief invalidated by anybody.

I think there’s a sort of pressure on parents of disabled kids to be marvellous, and I howl about it sometimes. I find it really fucking hard. I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech.

I love the boy to pieces and I’m grief stricken and that’s not a contradiction, that’s real. Both are true and I feel really passionately that parents have to be allowed to have that range of emotions. This is the ultimate rollercoaster.

Sometimes it’s absolute bliss and sometimes I feel a great big hole inside, I feel hollow inside.

BLOOM: What have you learned from Joey’s lack of speech?

Stephen Unwin: That there’s something beyond words. But that to me is a very challenging thing to have to understand because I write books and I direct Shakespeare and I’m completely classical about language.

If I had a son who couldn’t play football or fix a car, I’d say: ‘Oh well, I can’t play football, I can’t do any of that manly stuff.’ I can write and I read and read and read and I work on language all the time. So seeing that there is communication beyond language has been the biggest journey for me, and it’s about as far away as what I was programmed to do. It’s a difficult place to get to.

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Mom backs real blended food for tube-fed tot

By Jennifer Han

My twins Andrew and Eleanor were 28-week preemies. Andrew came home from the hospital with three stomach surgeries under his belt and significant brain damage. The brain damage caused cerebral palsy and epilepsy, which put him at risk of aspirating and made feeding difficult.

At 21 months he had a fourth surgery to place a G-tube to ensure he was getting nutrition safely and in hopes of boosting his calories.

Andrew, I was told, could no longer eat real food. Instead, his diet would be a formula that was described as nutritionally complete, but which I discovered is made up of 53 per cent corn syrup.

The G-tube solved the problem of getting formula into Andrew, but it exacerbated his reflux and vomiting. Andrew spit up every ounce, retched, lost weight, never slept and stopped smiling. Instead of producing stools, he had green diarrhea once or twice a week. He was on the brink of total dehydration and doctors suggested more surgery: a J-tube, nissen-fundoplication or GJ-tube, but with the caveat that they might not work.

Then, while scouring the Internet for stories about children with severe reflux, I came across something called the blenderized diet.

In this diet, vegetables, fruits, grains and meats are blended in a super high-speed blender until they become liquid, then fed through the g-tube.

Families out in the blogosphere said that real food had a calming effect on their children’s stomachs and as a result, stayed down.

I had no idea that real food was a possibility with a G-tube!

This diet – which was never presented to us as an option by our medical team – has given us our boy back.

The blenderized diet isn’t new or radical. Feeding tubes have been around for decades and patients were once fed mostly blenderized food. In the 1970s commercial formula was introduced; hospitals embraced the convenience and never looked back.

I told our doctor and nutritionist that before we did any more surgery, I was going to try the blenderized diet. They weren’t happy. They said they had never had a patient go this route and that formula was best. With some reluctance, our medical team agreed to a trial.

The first week of the diet, Andrew did not spit up once. By day four, he was completely off formula and having nice bowel movements one to three times a day. He went from taking multiple 10- to 15-minute catnaps a day to a single one-to-three hour nap. He started sleeping 10 to 11 hours straight through the night with no feedings.

At his weigh-in two weeks after the start of the diet, he had lost a few ounces. I was disappointed, but knew that as the body adjusts from a mostly-sugar diet to real food, this was common.

Ever since, Andrew’s been gaining weight!

He may spit up once a week or so but it’s usually if he’s overtired or constipated.

Now that Andrew’s body is responding in a healthy way to real food, it’s clear that formula didn’t agree with him. We are bewildered and beyond pleased at how amazingly fast, drastic and profound the change has been. Not only is the blenderized diet treating Andrew’s severe reflux but it’s made him happier and healthier and prevented further surgery.

We know this diet isn’t for all children with severe GI problems. However, I believe medical staff should present it as a treatment option along with standard surgeries.

While the blenderized diet is a foreign idea to most North American hospitals,
there are a few – like Children’s Hospital of Philadelphia and Cincinnati Children’s – that recommend it. In fact, in a 2010 study by Cincinnati Children’s Hospital, 75 to 100 per cent of 33 children with failed nissen fundoplications who trialed the blenderized diet showed an immediate reduction of 50 per cent or more in reflux and vomiting.

For Andrew and our family, the blenderized diet has been life-saving.

Before beginning any change in your child’s diet, run it by your medical team, as it’s important that you have a supportive doctor and dietician to guide you.

Blenderized diet resources

Homemade Blended Formula Handbook by Marsha Dunn Klein

Ainsley Rae blog: great practical tips from a mom

Blended Food Resource Group

Facebook group for the blenderized diet

Andrew’s first blenderized recipe

This one comes out to about 34 calories per ounce. His Elecare formula is 30 calories per ounce. In the other recipes I’ve come up with, ratios for protein/grains/oils/veggies/fruits stay the same. I just swap different foods each time. His blends tend to be between 30 to 40 calories per ounce.

3 cups of roast chicken 700 calories
1 cup orange juice 100 calories
1 cup soy milk 100 calories
2 slices of whole wheat bread 200 calories
1 cup blueberries 70 calories
1/2 cup broccoli 40 calories
1 cup spinach 60 calories
1 tablespoon of olive oil 120 calories
1/3 cup apple sauce 60 calories
1/2 cup peas 60 calories
1/2 banana 50 calories
1 container pureed pear 45 calories

Total Calories: 1645

Read about Andrew and Eleanor and the latest edition to the Han family at The Early Birdies.

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