Thursday, December 24, 2015

My dad was disabled, and cooler than most

By Louise Kinross

Earlier this month Bill Peace, a visiting professor at Syracuse University, disability advocate and author of the blog Bad Cripple, posted a moving piece by his son Tom about growing up with a father who uses a wheelchair. Tom, now 23, has a degree in political science and plans to pursue a Master’s degree in prosthetics. Here he is with his dad in earlier days, and below at university graduation. We asked him some questions about his childhood.

BLOOM: What did you think of your dad’s disability as a child?

Tom Peace: When I was a young child, I always thought my dad's disability was cool. I got to ride around in his lap, which no one else could do. It was fun, especially when we went down hills at what my ‘little-kid mind' thought was incredible speed.

Some of my fondest memories as a kid are sitting on the floor of the living room with my dad, fixing or maintaining his wheelchair. There was a cool element to his wheelchair. [Working on it] was something my father and I did together. It was a shared experience that no other kid had. I didn't realize it at the time, but that was very important to me.

In my child's eyes, my dad was not disabled, just different. We went everywhere together. We travelled a lot and cruising down hills was the best. I remember one of my friends in elementary school telling me that he wished his dad was disabled. That really stuck out in my mind. My dad was disabled and he was cooler than the other ‘normal’ parents.

BLOOM: You wrote that growing up you stuck out wherever you went. Can you explain?

Tom Peace: My father and I stuck out, not only because many places were inaccessible, but because of the way people acted towards my father. It was the strange comments and attitudes that made me realize how different my dad was. I distinctly remember church was the first place I recognized this. I remember telling my father I didn't want to go to church anymore, and when he asked why, I told him it was because people were mean to him.

Old people would constantly harass my father and tell him that if he prayed enough, God would let him walk again. I was too little to get that this was because people could not imagine life as a paraplegic. I thought they were weird. Why would my dad want to walk again? Then we couldn't go on cool wheelchair rides and stuff.

Even today, people feel they have the right to say horrible things to my father. For example, strangers will come up to him and say “If I were like you, I'd kill myself.” Can you imagine saying that to another human being who is just out buying groceries or whatever?

Another common one is “It’s so nice to see you out.” Where is my father supposed to be? From my childhood to my teens to today, people have always come up to my father and expressed extremely negative views about disability.

Another thing that happens to this day is that people assume that I’m not my father's son. Health-care workers were the worst. Once in the ER my father was asked if he could prove I was his child.

Most often people assume I'm his caretaker. Even when I was as young as 10 people would bend down and address me, not my father. This still happens. When shopping together, a cashier will hand me the change or return his credit card to me. My father is clearly the older adult and the one who handed them the money in the first place.

People assume that just because my father cannot walk he also cannot think. He has a PhD from Columbia! As a child I was confused. As an adult I am angry.

Inaccessibility was a huge problem, as were obscure entrances. We could never go through the front door. It seemed like we always went to a rear entrance or had to use a hidden elevator. The elevators were often locked or broken (if locked, no one knew where the key was).

I still remember using the maintenance hallway of a fancy hotel in Seattle where we passed Mick Jagger. I thought seeing the back way in was cool as a kid. But now I realize that it was blatant discrimination and a major Americans with Disabilities Act violation.

BLOOM: Was inaccessibility the main challenge?

Tom Peace: Yes and no. Accessibility was certainly a challenge, but with enough time and effort, that was surmountable. Ignorant people proved to be the biggest challenge.

My secondary school administrators were outright hostile to any suggestion of equal access. Employees of all sorts of businesses clearly did not care about, or want to deal with, my father. Most access issues could be solved given a little effort and ingenuity. The primary issue was no one valued wheelchair access.

People who were supposed to be helpful were unwilling to help. The big challenge growing up was that no one gave a shit. 'Oh, the buses aren't accessible? Too bad for you!' It was not just that buildings and vehicles weren’t accessible. There was not the slightest effort to follow the law. Those blue wheelchair logos were a joke. I called them ‘the blue sign to nowhere.’

BLOOM: Tell us about some of the things you couldn’t do because your dad couldn’t enter a building.

Tom Peace:
My dad and I could do anything we wanted. If a building wasn’t accessible, we did something else. I remember being in Boston. We went on the revolutionary war ship Old Ironsides. The lower decks weren't accessible. So my dad talked a commissioned sailor stationed on the ship into showing me cool stuff below deck that no one else got to see.

BLOOM: How did it make you feel as a child when you got to an event and realized there was going to be a problem getting in?

Tom Peace: In a word: excluded. I felt like there was something wrong about us that justified our exclusion. Very quickly I realized that there was nothing wrong with me or my dad. Like my dad, I got angry that the legally required accommodations were not made. It made me realize that companies and institutions like schools are not there for you, they are there for themselves. We did not fit into a standard mould, and were knowingly excluded.

BLOOM: I remember hearing your dad interviewed about a time when he was going with you on a school trip but there was no way for him to get on the bus, so he had to crawl on. What is your memory of that?

Tom Peace: That is a hazy memory. All I recall was I wanted to see the new Air and Space Museum. I also remember my dad bought me the coolest WWII bomber jacket.

BLOOM: You write about antagonism between your dad and your school principals: 'They did not like us and we did not like them.'  

Tom Peace:
They absolutely made things difficult for us. They always locked the only accessible door in the evening. My dad was a Cub Scout leader. They knew my father and I attended Cub Scout meetings. Even knowing this, the doors were locked at the school.

The school flat out refused to consider getting or renting accessible buses. My school pretty much did everything possible not to comply with the ADA. We did not like them because they adamantly refused to place any importance on basic access.

They thought that making any reasonable accommodation was a choice they got to make. When my father asserted that the law required equal access he was called “entitled and bitter.” Worse he was “an expensive burden on the system” and wanted “special treatment.” Asking for equal access and to participate in my education is in no way special treatment.

BLOOM: You wrote about how when you graduated from university your dad couldn’t see you because the disability seating was at the back.

Tom Peace:
Disabled seating was not at the back—it was non-existent. The place my father watched from was the only random place he could get to. All the floor seating was reserved in advance, with costly tickets. None of it was reserved for people like my father who actually needed to sit on the ground level. There were no clear lines of vision from where he sat to where I crossed the stage, so he couldn’t see me. This really put a damper on the day. My father wrote an extensive post about this incident.

BLOOM: How has growing up with your dad, including his disability and access issues, shaped you as a person?

Tom Peace: Growing up with a disabled father has made me the type of person that questions everything. I always ask: ‘Why are things this way?’ I am deeply mistrustful of institutions and authority figures. I don’t mindlessly accept the status quo.

Growing up I saw how power could be abused and certain segments of the population discriminated against. My dad was regularly screwed for the convenience of everyone else. I have always wanted to help those whose civil rights are ignored. Because of my dad I know the social support systems that exist are inadequate. Over 70 per cent of disabled people live below the poverty line and the vast majority are unemployed. This made me see, at an early age, the effects of wealth disparity.

Questioning the status quo as I do shaped my political beliefs and aspirations. I look at life as a series of challenges. I know that nothing is impossible with a little effort, ingenuity and creativity.

Wednesday, December 23, 2015

BLOOM media roundup

Looking for a read or video that will make you think? Check out these disability, health and parenting stories we've collected recently. If we missed a good one, please post the link in the comments.

Parents of a disabled child have to save for three The Globe and Mail
According to a University of Calgary study, 24-7 support for an adult with autism or other disability costs over $158,000 a year, and has been underestimated.

'What we have to do is find the places of hope' The Globe and Mail
Jean Vanier, founder of L'Arche communities for adults with intellectual disabilities: 'The more we lose, the more we come to the reality of what it is to be human.' 

Teen's death raises questions about secrecy surrounding kids in care The Toronto Star
A teen with autism wanted to go for a bike ride. The group home said they were going fishing. The teen acted out, was restrained and later died. Ontario's provincial advocate for children and youth only heard about the death when a reporter called him. "'It's 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."  

Unrestrained Pro Publica
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. “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 after being tied to a bed, and then a chair, while vomiting as much as 30 times all night.

Why do you never see a Lego mini-figure with a disability? The Guardian
"There is irony in the fact that toy shops are legally bound to consider the access of their disabled customers, while the products inside, created by huge companies that profit from the entertainment and education of our children, have no legal duty to consider how they represent disabled children and can therefore continue to culturally marginalize them."

The meddling masters of our high-cost health care The Globe and Mail
André Picard: "All told, Ottawa, the provinces and territories spend about $6.5 billion a year on the administration of the [Canadian] health system, and that is just the cost of running ministries of health and regional health authorities, not the administration within hospitals and other programs."

When hospital paperwork crowds out hospital care The New York Times 
Increasingly nurses are evaluated on how well they track a patient electronically, as opposed to the actual care they are providing.

Video: The teenager left paralyzed by one tiny mistake The Guardian
After a routine surgery, nurses gave this British teen fluids through an unclean tube that had been used for anesthetic. The extra anesthesia caused a cardiac arrest. 

NHS trust 'failed to investigate hundreds of deaths' BBC
Less than 1 per cent of 337 unexpected deaths of patients with intellectual disabilities were investigated over a four-year period by Southern Health Trust in Britain.

Death and sandwiches The New York Times
Noting how often medicine forces doctors to think when they want to cry, a resident physician says: "Dampening our emotion response, then, can help free our analytical minds to more effectively act, advise, cut, diagnose and treat, often under conditions of great uncertainty."  

The missing generation Spectrum
Left to languish in psychiatric institutions or drugged for disorders they never had, many older adults with autism were neglected or forgotten for decades. Efforts to help them are finally underway. 

I'm not broken The Washington Post

What this Washington reporter with autism wants you to understand.

Audio: What happened to your face? CBC Radio The Doc Project
Tanya Workman has a facial difference, something we would once label as a deformity or disfigurement. So does David Roche. But while language has evolved, have cultural attitudes and understanding? This doc is about perceptions of difference and the stories we tell about those differences.

Yearbook puts special needs students in 'short bus' on last pages WPXI-TV
Child's grandmother looks for his picture in his yearbook but it's not on the page with his classmates. Instead, it's been photoshopped into a yellow bus with other special-needs students in the back.

The disability experience Bad Cripple
Syracuse University professor Bill Peace: "Why is the social life of 'crippled' people so different from those who ambulate on two feet?"

Video: The enchanting music of sign language Ted Talks
Music can be seen and felt says deaf artist.

Lonely people's white blood cells less suited to fighting infection, study says The Independent
This study could help explain why people suffering from social isolation are 14 per cent more likely to die early compared to people who are not lonely. 

Tuesday, December 22, 2015

Christmas cards flood in for hospitalized girl

Here’s a heartwarming story about Holland Bloorview inpatient Evelynn Nichols, 9, from Kathy Gravel, social worker on our brain injury unit. Evelynn, wearing her bravery beads, is pictured above with dad Stephen.

Nadine Pigeon is telling me that her daughter Evelynn is receiving Christmas cards from all over the world as we speak.

A volunteer parent in her Chatham hometown’s school lunch program heard about Evelynn’s severe stroke in September, and invited folks through Facebook & imgur to send Evelynn Christmas cards to boost her spirits over the holidays.
She’s now receiving 150 cards a day, bins' worth over these weeks, from as far away as Norway, Finland, Russia, Australia, England, China, all over the United States, and almost every province in Canada! Whole school classes are sending cards!

Sometimes people send funny things along too: One person said ‘I’m going to knock your socks off’ and sent socks! Evelynn can laugh and gosh, she thought this was so funny! The whole idea was to brighten and boost her spirits and her mom says this is sure working, as well as spreading the joy of the season all over the world.

Friday, December 18, 2015

Making a tree is as fun as buying one, and more kid-friendly

Susan Cosgrove's two-year-old son has autism and isn't ready for a real Christmas tree this year. 

"It was a safety issue as far as him pulling it over or climbing on it, as well as the choking hazard of him reaching the lights and small, breakable ornaments," she writes. "It was also a sensory and impulse-control thing as far as touching and removing the ornaments. He's already pulled half the stickers off of this one but I bought about 1,000 stickers, so it's fun to keep putting new ones on."

Susan says an occupational therapist suggested they make their own tree. "It also saves my sanity because I'm not having to monitor him every second with a real tree."

Thanks for sharing this awesome idea Susan!

Thursday, December 17, 2015

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.

Wednesday, December 16, 2015

Putting autism risks in context

By Louise Kinross


It’s too bad this illustration that ran with a piece in the New York Times' Motherlode column about antidepressant use during pregnancy and risk of autism didn’t have a bubble beside it that read: “My baby has almost a 99 per cent chance of not having autism.”

Because that’s what the Canadian study found.

But the way most news stories are reporting it, you might come away only with this stat in your head: antidepressant use in pregnancy is associated with an 87 per cent increased risk of autism in children.

It is. But the baseline rate of autism is about 1.1 per cent. And the rate of autism in the children of moms taking antidepressants was still less than 2 per cent.

According to the March of Dimes, a woman has a 3 per cent chance of having a child with a birth defect. This means that the risk of having a child with any birth defect when the mom doesn't use antidepressants is higher than the increased risk for autism suggested by antidepressant use in this study. 

Only CBC seemed to get it right with this lead: "Taking antidepressants during pregnancy may slightly increase the risk of having a child with autism, but the chances of having a baby without the disorder are still about 98.8 per cent, new Canadian research suggests."

The CBC piece, which includes comment from Holland Bloorview neurologist and autism researcher Evdokia Anagnostou, explains why the study’s findings are more complicated than they initially appear.

You may find this piece we did earlier this year helpful: Making sense of autism risks.

Illustration by Allison Steen, reprint from the New York Times.

Tuesday, December 15, 2015

Program gets kids of all abilities up and active

By Louise Kinross

Igniting Fitness Possibilities (IFP) is a Holland Bloorview program designed to get kids of all abilities active in fitness and sports. It’s offered in partnership with community groups in Toronto for students in Grades 1 through 12. We spoke to Virginia Wright, Holland Bloorview senior scientist, to learn more. Virginia co-founded the program with Kelly Arbour-Nicitopoulos, assistant professor in the faculty of kinesiology and physical education at the University of Toronto.

BLOOM: What is the purpose of the program

Virginia Wright: We’re building an inclusive program designed to inspire a passion for physical activity in kids who have disabilities and those who are typically developing who aren’t active physically.

There are many programs out there that are integrated, where you bring your child into an existing program and they adjust the program to fit the child as best as they can. We wanted to build the intention and curriculum of our program to be inclusive from the beginning. So in our program manual, you would see that each activity we do is designed with different ways that it can be adapted.

Many of the kids with disabilities tell us that they hate phys-ed class at school because it’s adapted only marginally, and in ways that make them feel belittled or singled out.

BLOOM: Which children can participate?

Virginia Wright: Our current groups have children with physical disabilities who use manual wheelchairs or walkers, as well as children with autism, developmental coordination disorder and intellectual disability. In terms of the children without disabilities, we’re looking for kids whose parents would say: ‘I can’t get him off the couch.

In the pilot phase, we are looking for kids who can participate independently because we want them to be the centre of the interaction with staff, as opposed to having support workers or families involved. They need to be able to work comfortably in a group, to tolerate noise and stimulation, and to follow three-step instructions.

BLOOM: Why is there a need for this kind of program?

Virginia Wright: We have lots of great programs at Holland Bloorview, but where do kids go from here into the community? What if they don’t have a rehab centre like Holland Bloorview? We wanted to design an inclusive program we could put into the community in the first place, so all of the kids’ interactions and friendships and activities happen there.

We’ve partnered with Variety Village, the Miles Nadal Jewish Community Centre, U of T, the Abilities Centre in Whitby and the Pickering Soccer Club. They’re trying it out and telling us what they like about it. Ultimately the goal is to get programs going across the country.

BLOOM: How does the program work?

Virginia Wright: The first phase is called Quickstart. It’s 16 sessions for one hour a week after school. We’re helping kids develop fundamental sports skills, movement skills, phys-ed skills and game-play skills in a collaborative, non-competitive environment.

The program is run by fitness instructors and coaches who have trained in adapted physical activity, not health-care professionals. We’re teaching the skills you need for games and activities like martial arts or yoga or dancing. The kids work together on a team.

So one game might be that they have to get their bean bag down to the other end of the gym, but the rule is that everyone on your team has to have held the bean bag twice. They have to figure it out. At the end of four sessions they have to work together to create their own game and instruct everyone else in how to play it.

BLOOM: What is the second phase?

Virginia Wright: During Quickstart each participant is assigned a coach. The coach is at the sessions, seeing what you’re doing, facilitating activities and helping you set physical activity goals. The coach helps you figure out what type of activity you’d like to sign up for in the second phase, which is called Give It A Try.

In Give It A Try students pick an eight- to 12-week program, usually at the same accessible community centre IFP is offered at. A coach works with them to find something that is a good interest and ability fit. These are regular programs like basketball, Zumba, fencing, soccer or Tae Kwon Do.

IFP pays for this program because one of the barriers to families trying new things is being able to afford them. Once they’ve begun Give It A Try, kids continue to receive coaching about developing skills and setting goals for the future.

BLOOM: What kind of results are you seeing in kids who’ve completed the program?

Virginia Wright: We see large increases in kids' self-efficacy—in their confidence in trying new things and feeling they can do it, and in their pride of setting physical goals and achieving them. We have them fill out questionnaires before and after on their attitudes to physical activity, their confidence and a goals form on what they want to work on. They also do an advance motor skills test before and after and we monitor them with a Fitbit-like device. The kids say they have a much stronger sense of ‘I can do this’ and that physical activity is fun.

Igniting Fitness Possibilities is funded by Chillin’ for Kids, the Milos Raonic Foundation, The National Bank, GoodLife Fitness, the University of Toronto’s Connaught New Researcher Award and Holland Bloorview Kids Rehabilitation Hospital Foundation.

Monday, December 14, 2015

'Travelling, side by side, through these villages of grief'

Charlotte Schwartz (above right) holds Isaiah, 4, with husband Seth and Rivers. Isaiah has a rare metabolic disease called Galactosemia, which is associated with speech and motor delays as well as seizures. Isaiah is diagnosed with autism and global developmental delay.

"My husband and I were only married a year before Isaiah was born," she writes. "We had virtually no time to just be us before we had this beautiful baby, and then everything changed again days later when he fell ill."

Here she shares a letter to her husband that reflects "how tremendously challenging having a child with various problems can be as it relates to a marriage."
 You can follow Charlotte at Running On Borrowed Legs or on Today's Parent: 'I worry my special-needs son is lost in the school system.'

By Charlotte Schwartz

My dearest Seth,

It's time I committed these thoughts to paper.

I feel like we've been on this road much longer than we actually have, don't you? Doesn't it seem like since forever that we've been travelling, side by side, through these villages of grief and hamlets of sorrow?

We're both so irreparably tired that all but a few things have ceased to make sense. Basic concepts are easiest for us, anything more complicated is a challenge we seem all too weak to face. I feel like we love each other, so much still, but we are silent on that subject most of the time, favouring constant action and continual, often circular motion over idling. 

But I remember that there was a timenot so long agowhen our contact amounted to much more than a brushing of cracked, dishpan hands across a sink full of dishes or another e-mail exchange about Isaiah's appointments, therapies, fundraising or schooling. Indeed there was a time when "we" were the sum of our respective parts; complementary pieces in a giant puzzle and people we were proud to be. There was a time when we were both chasing dreams for our individual and collective selves that extended far beyond just getting to the end of each week. 

I remember that not so long ago our lives were more than a game of schedule-checkersarguing about whose appointment trumps whose commitment when considering Isaiah's scheduled assessments, therapies, school meetings, and life. It was full of promise; of a connectedness I had never known before, of  a will to work hard for one another and to never be satisfied with less than our respective best. But now less is the best we can give. 

There was a time when, just five years ago, we promised to stand by each other through whatever proverbial "thing" may come our way. We said I am my beloved's, and my beloved is mine. 

But things have really shifted, haven't they? Because we belong to these boys now: I belong to my insurmountable sorrow and you belong to that place in your mind that you retreat to so frequently.

We belong to long days and erratic sleep patterns and brains that won't quiet themselves. We belong to the vice-like grip Isaiah's diagnoses have on our lives. Our options, which at one time seemed without limits, have dwindled unexpectedly. Altering the status quo could irretrievably upset the "balance" that we have worked so hard to find, ignoring how damaging that balance is to the concept of "us".

Our boy came into this world just two weeks after our first wedding anniversary; I was 28. I loved you on the day we were married but I loved you again on the day Isaiah was born. You became something new to mea dad who I knew would do right by his son. A dad who I knew would redefine the term for me and never give up. Always being best, better. 

But a week later we found out he was sick. A rare disease, no less. 

No treatment. No cure.

Questions without answers, nights devoid of sleep, silent screams into oblivion and painfully blank stares that we pierced each other with. In those moments, despite our promises of abundance in love and life, we had nothing to give to the other. Nothing but silence which you needed but which felt like it was slowly infesting my life and weaving throughout my body like a poison.

Five years later, since his arrival, we still find ourselves silent often. My grief has become an immovable fixture; a hurdle over which I cannot leap, a brick wall I cannot scale. It seems it will always be there. 

But as you would, you have dealt with your grief differently; like a scientist. You took your grief and converted it to an energy, a fuel. You composed an orchestral piece comprised of studies and statistics and words so meaningful that they mean nothing to so many people. You have conducted your life despite all of this, while I have voluntarily laid mine to rest. My best years, I tell myself, have come and gone. At 28, the rest of my path was forged and predictable and banished to a balancing act of maintaining composure, of being strong for everyone else, and of slowly falling to pieces on the inside and knowing, inherently, that may never be fixable.

And while I stay strong, I admit that over these last five years I have given up more than a hundred times. I've given up on you. I've given up on Isaiah, on our home, and on myself. I've given up on us, on holidays, and on some of my life's objectives. My immovable grief became so burdensome that I had no choice but to throw in the towel and accept that life had handed me lemons, and that try as I may, I don't really like lemonade.

So it's no wonder that as many as 85 per cent of parents of children with "special needs" divorce, is it? His diagnosis belongs to all four of us and because of it, in many ways, we are forced to live alone, together. 

It is a life that needs two people, and two people who must be happy dividing the mundane and conquering to-do lists. It is a life where progress is so rarely made that when it is, we are cautious and apprehensive. We do not celebrate it because it may not be real.

But as I promised I would on that day we were married, when I give up, I always pick up and start again. My fatigue-driven capitulation is often short-lived and my brand of drive is renewed, if only for a while. It is in those short bursts that I can see your smile on our wedding day. I can see the hands I held at the altar. I can feel the hands on my shoulders when we were dating that were tentative and exciting. But those bursts are so painfully short; the reel breaks and we are thrust back to reality. 

My dearest Seth. I am so sorry that things have turned out this way, though I know I don't have to apologize. Nothing is any one's fault. Not really. But when there is nothing left to say an apology seems an appropriate concession; when we have lost the ability to say the words we would give limbs to hear our boy say one dayI love you. 

I know now that love evolves quickly and adapts to meet changing demands. Our version of love may not play out the way it does for our peers; indeed, it is almost exclusively devoted to the needs of our boy. Our love is expressed in quiet subjugation, in keeping appointments, in sending "How are you?" text messages mid-day when you know the answer will always be "Could be better." Our love's currency is reliability and sameness where all other variables are at frequent risk of changing. And if those things don't constitute love in our circumstances, then I'm afraid I know no other way. 

I want you to know that though we never seem to have moments or opportunities anymore, that in much the same way I did before we were married, I gather my strength in the latest hours of the night when we retire to bed and when, for those few brief moments, you are close enough to me that I can breathe you in. 

It is moments like those that fuel me more than any verbal exchange could; where so much has happened that so many words mean so little. 

Thursday, December 10, 2015

The blame game: It's got to go

By Louise Kinross

Yesterday we ran a beautiful piece by Keith McArthur, about his family's nine-year search to get a genetic diagnosis for his son Bryson.

What jumped out at me was a paragraph about how Keith’s wife Laura had questioned whether she had done anything during her son’s pregnancy to cause his condition. Laura heads our client- and family-integrated team at Holland Bloorview.

“Laura has always felt like maybe the pregnancy was her fault—that she did something wrong when Bryson was in her belly,” Keith wrote. “The pressure on expectant mothers to be perfect is immense. Now she can finally let go of this toxic guilt.”

I had to go back and read it a couple of times. Laura and I had talked about our sons with disabilities before. At one point she told me she carried tremendous guilt. But I never interpreted that to mean she felt she had done anything to cause her son’s condition.

Because that was absolutely preposterous.

Mothers don’t intentionally harm their children.

I’ve written before about how historically mothers were blamed when a child was born with a disabilitythey must have sinned.

Today the message isn’t that we’ve had a “bad” thought, but that we haven’t taken care of our bodies. Public messages abound that suggest that mothers can prevent most birth defects by what they do—or don’t do—during pregnancy. For example, Five Ways To Have A Healthy Pregnancy and Baby
Of course this is ludicrous since the cause of up to 70 per cent of birth defects is unknown (according to the March of Dimes).

So when I read that Laura’s “toxic guilt” centred on whether she had contributed to her son’s condition it made me incredibly sad, and mad.

I’d just finished reading a chapter in Steve Silberman’s fascinating book NeuroTribes, about the history of autism, called “The Invention of Toxic Parenting.”

Silberman recounts how in a seminal paper on autism, child psychiatrist Leo Kanner suggested two conflicting causal explanationsthat children were born with the condition and that parents caused it: “While emphasizing the likelihood that autism was innate and inborn, he left the door open to a more unsettling possibility: that these children had been pushed into mental illness by their selfish, compulsive, and emotionally frosty parents, who tried to substitute poems and symphonies and catechisms and encyclopedias for the nurturing love they were unable to provide.”

Kanner suggested that the all-encompassing interests or “obsessions” of the young patients he saw—a key trait of autism—were not natural ones that stemmed from the child, but a bid for parental affection.

Silberman says Kanner’s views were informed by a theory that women who wanted a professional career unconsciously felt hostile towards the child that interfered with it.

He criticized what we today might call special needs "Mama Bears"—those who came to him well-versed in the history of their child’s symptoms. They were obsessive” he wrote repeatedly in his paper.

And in describing the families of the children in his paper, he writes: “In the whole group, there are very few really warm-hearted fathers and mothers.”

Hmmm. I wonder what scale he used to measure the temperature of the parents’ hearts?

Silberman notes that there was a political agenda for blaming parents for their child’s autism. “A condition that was inborn could not be prevented—it could only be ameliorated. Implicating parenting style in the etiology of his syndrome, on the other hand, would place child psychiatrists firmly at the centre of family life, giving them a role arguably more powerful than that of parents themselves: the ability to intervene therapeutically for the sake of the child.”

Not only do we have religious and public health rationales for blaming mothers (in particular) for their children’s disabilities, we have these psychological ones too.

When I tweeted a quote about Laura’s toxic guilt yesterday, a BLOOM reader tweeted back: “We’re still waiting for our genetic scan. Almost two years.” With the hashtag: #guilteatsyoursoul.”

I always thought my own sense of guilt about my son’s disability was something peculiar to me. I didn't realize it was something that crushes most mothers. Now I see how it seeps through our culture, infecting parents.

Last week The New York Times Magazine reported this story of an 82-year-old man, Frank Stack, who shot his adult son and daughter, both of whom had significant developmental disabilities, then his wife and himself. "Both Stack parents regarded his combat history as a possible reason for his children's disabilities," writes the author. "I think he carried that with him all his life," a caregiver is quoted as saying.  

Young adult author John Green (The Fault In Our Stars) posted an interesting video about his experience with mental illness, and how we tend to blame people for their disease (be patient, it takes a while for him to get to it).

“The central way we imagine sickness as something we must conquer doesn’t really apply to chronic illness, he says.

“I have a theory—I don’t think we humans like to imagine our lives as random. We need human lives to be narratives that make sense. So if we can’t find causation, we just create it. Like people get depression because they’re weak. Or they get diabetes because they don’t eat well. Or they have heart failure because they don’t exercise.

“All of that is totally inaccurate or overly simplistic but we want every effect to have a cause and when we can’t find that cause, we invent it.”

Of course that applies perfectly to common beliefs about women and the control they wield over the health of their unborn child.

Wednesday, December 9, 2015

'Getting a diagnosis has changed our world'

By Keith McArthur

Laura took a deep breath and mustered up the courage to call the neurology clinic.

Families of sick children were supposed to wait patiently. The clinic nurse had made this clear eight weeks earlier when Laura first called to check up on our son Bryson’s lab results.

But parents quickly learn that it pays to be pushy. And what was supposed to be a four-month wait had stretched to half a year of waiting to find out if Bryson had tested positive for a degenerative disease that would prevent him from reaching adulthood. So Laura ignored the ‘don’t call us; we’ll call you’ directive and dialed again.

“The results still aren’t back,” the nurse said. “We’ll call you when they are.”

When Laura pressed, the nurse reluctantly agreed to check on the file. A few minutes later, the nurse returned to the phone to sheepishly acknowledge that an error had been made. Bryson’s blood was never sent to the US lab for testing.

The reality of this—another four months of waiting—hit Laura hard. She hung up the phone and wept.

Four months later, the results finally came back. They were negative.

For nearly a decade, Bryson has endured countless tests to try to uncover a diagnosis: A muscle biopsy. Multiple MRIs and EEGs. Dozens of blood and genetics tests. One by one, we crossed potential diagnoses off the list as every test came back negative.

But a few days ago our world changed. Through a full sequencing of Bryson’s DNA, we have a diagnosis. Bryson has an extremely rare genetic disorder known as GRIN1, named for the gene that is misspelled.

It’s so rare that our doctors don’t really know much about it. And there’s very little on the Internet about it. But through social media, we’ve already connected with families in the United States and Europe who have children with this diagnosis.

While details vary from person to person, the common symptoms include moderate to severe intellectual disability and low muscle tone. Many kids also have seizures. Interestingly, several of these children find joy watching sports.

And the good news: the disease isn’t degenerative. GRIN1 kids progress and develop in physical and mental ability at their own pace.

Our kind and brilliant genetics doctor, Ronald Cohn, confided he’s been surprised over the years at how happy families are to receive a diagnosis—even when it doesn’t change treatment.

And indeed, getting a diagnosis has changed our world.

Laura has always felt like maybe the pregnancy was her fault—that she did something wrong when Bryson was in her belly. The pressure on expectant mothers to be perfect is immense. Now she can finally let go of this toxic guilt.

And for me? I understand now that Bryson’s little body is doing exactly what it’s supposed to be doing given his own genetic code. He is perfect. Yes, one of his genes is coded differently, but the vast majority—some 20,000—are copies of mine and Laura’s.

Not only that, but we now have the knowledge that in the future, there could possibly be new treatments—medicines or gene therapies—that could help Bryson to progress more quickly.

The biggest change, however, is that our family is finally part of a community. It’s a small community; we know of just eight other people with the disease. But we are no longer alone.

Bryson will never be alone.

We found these families through a blog post a GRIN1 mom had written.

So I want to speak directly to any families who might find this post after receiving their own diagnosis:

First, congratulations and welcome to our community. Please reach out so we can learn more about GRIN1 together. Meantime, I’ve included some links below where you can read more about Bryson and other kids with GRIN1.

Tuesday, December 8, 2015

LIGHTS spurs families to take action on housing

By Louise Kinross

LIGHTS is a Toronto program that brings together families of young adults with intellectual disabilities to help them plan creative housing so their sons and daughters can move out. It’s a partnership with Community Living Toronto and was founded by Mary Pat Armstrong, a parent who purchased a home for her own daughter and roommates to move into more than a decade ago. 

Yesterday LIGHTS senior facilitator Laura Starret met with me to talk about the innovative partnerships and ideas LIGHTS is generating at a time of crisis for housing for people with intellectual disabilities. Last year a report from the Select Committee on Developmental Services said there were 12,000 Ontario adults on a list for group homes with a wait of 20 (yes TWENTY!) years.

BLOOM: How does LIGHTS work?

Laura Starret: LIGHTS is about helping families to envision, plan for and create an alternative living situation for their son or daughter outside of the family home. The families engaged with LIGHTS are tired of waiting for the traditional housing options [through the government]. They know that the system is broken and they’re ready to take action. They want to tailor housing to their son or daughter’s unique needs.

BLOOM: How do you work with families?

Laura Starret: Most of what I do is help families plan and budget and meet other like-minded families. When Mary Pat chatted with focus groups about developing LIGHTS she found a lot of parents felt isolated and alone. They felt they were the only ones out there thinking about this. Of course they’re not alone—I’m working with over 150 families.

BLOOM: How do you connect families with similar interests in housing?

Laura Starret: The most effective way is through networking evenings where people come out to hear about a particular topic. At one of the evenings I had a continuum on a wall and asked both parents and their family member to take post-it notes and stick them on when they would like to move out—in the next six months, or 12 months or two years. Two families whose children have since moved out happened to place their post-it notes on the same spot. Families come up with the ideas of what they want and I connect ones that sound like-minded.

BLOOM: What kind of housing have you facilitated?

Laura Starret: We’ve had a family purchase a home and invite other families to join in. So they’ve figured out what the costs are and given other families a lump sum of ‘this is how much it is and this is what your dollars are going towards.’ It’s an all-inclusive type living situation.

Other families have come together to rent an apartment. In one case they found a university student who’s a mentor to two young ladies. She doesn’t pay rent but in return she spends about 10 hours a week with the two women supporting them with whatever they need: ‘You’ve never made meat loaf? Let me show you how to do that.’ In this case, the support needs of the two women are different, but the mentor can tailor her interactions to give each one what they need.

LIGHTS has also benefited from a partnership with Community Living Toronto, which supports 38 people living in 21 units in a Toronto community housing project. LIGHTS is using four of these apartments. 
Some residents require 24/7 type of support and others need only a few hours a week. Some units are rent-geared-to-income, which makes them most affordable for someone on the Ontario Disability Support Program (ODSP). The people in this building say their social circles have quadrupled because of the greater opportunity to socialize with people.

We have three gentlemen who live together in a house. They go to a program or to work during the day but have a caregiver who lives with them Sunday until Friday morning, to help with their evening routine. On Friday the men go home for the weekend and the caregiver has the weekend off. Every situation is different.

BLOOM: Is LIGHTS just for families with high incomes?

Laura Starret: No. I always tell families you have to take a creative approach to it. The vision for LIGHTS has always been that it’s about you helping me and me helping you. Families will contribute in different ways. Having open dialogues and people to bounce ideas off motivates people to move and creates momentum. We recently had a real estate agent volunteer to do apartment and housing searches for our families.

Once a family has a partnership with another family or families, we do an individualized budget with each person. The budget is based on shared costs and costs unique to that person. So we apply the person’s own resources, like the ODSP, and list out all of the expenses, leaving us with a gap. The family is expected to contribute a minimum of 20 per cent of the gap. LIGHTS has raised $4.7 million over the last five years. In some cases LIGHTS can help fill the gap. When we’re planning with families it’s not just the residential side, it’s for the person’s whole day.

BLOOM: How many housing arrangements have you facilitated?

Laura Starret: We’ve had 30 that relied on LIGHTS funding to bridge the difference, but others that just required planning, budgeting and networking support.

BLOOM: What kind of changes have you seen in people who have moved into their own place?

Laura Starret: We’ve seen some pretty incredible stuff. Families often report how people are doing things they would never do at home. We see people being open to taking risks, meeting new people and expanding their horizons.

Photo by Louis Thomas 

Alexander and Simon, in photo above, are two LIGHTS friends who decided to rent apartments in the same building and meet once a week to cook dinner together. You may remember this piece we did a year ago about two young women whose families got together through LIGHTS to rent an apartment that they share.