Friday, December 19, 2014

Wanted: friends

By Nathalie Wendling

I think having friends is the most important thing in life. No matter how bad my day is going, having a friend around seems to make it better.

Finding friends for my 14-year-old daughter Melanie (above right), who has Cornelia de Lange syndrome, has been an endless, exhausting and sometimes devastating, struggle.

In nursery school, the whole class was invited to a birthday party—except Melanie! In Grade 2, Melanie was invited to a party, but bullied when she got there. Girls took turns pulling down her pants and laughing. There were so many difficult moments and painful realities that I didn’t want to see.

In elementary school I figured out one-on-one play dates didn’t make sense. Melanie couldn’t communicate properly and had no idea how to socialize. So I'd invite a bunch of girls over at the same time. Over the years, these girls learned how to communicate with Melanie, understand her differences and even help with some issues like toileting. The girls were comfortable with all of it. They loved Melanie and loved coming over as a group. The hardest part was accepting that Melanie could never bond with the girls as well as they’d bond with each other.

By Grade 5, our local school couldn’t meet Melanie's needs. So we placed her in a special program 45 minutes away. The program was designed for children with special needs. We were excited and curious to see if Melanie would bond with other children with disabilities. 

Within two years, Melanie made a friend at this school. But she lived far away. We tried a few play dates but the distance to get together was absurd. We'd drive three hours for a two-hour play date. Melanie would cry. She wanted to see more of her friend. The two girls were very comfortable with each other. They'd spend hours on the phone, which was amazing because Melanie can’t really talk.  

Melanie seemed more at ease and confident in her new classroom as well, which was a program for 10 children with special needs (as opposed to the full integration with an assistant she’d had in our local school).  

Then, in Grade 8, Melanie had numerous health problems. She was absent from school for almost six months. It was awful, lonely and depressing. No phone calls, no visits, no cards and no friends nearby. Her new friend lived too far away. Melanie was alone all the time. She seemed depressed for the first time in her life. It was heartbreaking. 

“This is not a life,” I said to my husband and son Tommy. “Something has to change. Friends are so important. We need to figure something out. We need to find friends! We live in a small neighbourhood. Where is everyone? Everybody deserves at least one good friend!”

So we discussed some options. We decided:
-Melanie needs to attend a school with a special-needs program with some integration that is much closer to home (one exists in our neighbourhood for Grade 9) 

-Melanie needs to find friends, maybe peers with special needs, close by.
-Melanie needs to get out of the house to an activity in our neighborhood—not downtown where most of the activities are offered
-As a family, we need to find a common activity that isn’t TV! We can't ski, skate or go swimming together, so what else can we do? 
-As a community, we need something for everyone: children with and without disabilities, teens, adults and seniors. We need inclusiveness and integration. Melanie enjoys being around people of all ages. 

After months of thinking and intense discussions, we had a plan.

Last spring we started a hand drum circle in our basement with two other families—moms, dads and siblings. We found a teacher and bought some hand drums.

After six months, we moved the drum circle to the Legion in our neighbourhood. And the circle keeps growing. By February, more than 50 people will join: old, young, teenagers, those with and without special needs. Everyone in our community is invited.

The drum circles are a blast of energy and super social! We never imagined they would be this fun! Melanie and her brother Tommy have made new friends. My husband and I have made new friends (we needed some too!).

Melanie was able to reconnect with her elementary school friends from the community. Last week, we invited the group of girls who used to come to our house when Melanie was younger to the drum circle. Melanie was ecstatic to see them!

Melanie also gets to make new friends. One is Rob, who is 31 and has cerebral palsy (above centre). He attends the drum circles on a regular basis. He also comes over to our house for dinner and watches Tommy (above left) play hockey at the arena.

Melanie, Tommy and Rob have become good friends. They laugh so hard together that they can’t breathe! And that makes them laugh even harder.
Nathalie Wendling is happy to answer questions about her drum circle at nats.wendling@gmail.com. You can follow the family at 2 Pet Rats, the website they created when Nathalie and her son Tommy wrote Melanie and Tommy Have Two Pet Rats and One Syndrome.

Wednesday, December 17, 2014

For some parents, the 'empty nest' is a fiction

By Ijeoma Ross

Unexpectedly we have found ourselves in the midst of a transformation. It’s not our transformation, but one that is taking place around us.

Many parents we know are undergoing a major transition within their families. It seems that suddenly their children are old enough to leave alone for brief outings or older siblings can be pressed into 'babysitting service' for a spontaneous night out. The hassle of finding constant care for offspring is evaporating.

While there are different concerns about leaving teenagers unattended, this is the first step toward the joys and adjustments of an empty nest, when, after years of dedicating time and energy to their children, couples are free to do what they want. They can eat out, travel and generally rearrange their schedules at will.

It sounds nice.

For parents with severely disabled children, it also sounds like fiction.

Despite his age, we cannot leave our son Deane alone and I can’t imagine a time when that would be possible.

His younger sister, who understands Deane’s needs completely, can look after him for a brief period of TV watching, but cannot lift or reposition him. We also feel strongly that she has her own life to live.

It’s not that we are without a social life. Our friends are very accommodating about doing spontaneous dinners and events at our house. They are also more than willing to put their backs into lifting Deane’s wheelchair into inaccessible houses. But now that they are increasingly free to enjoy short-notice activities and meals without kids, we just can’t adapt to that kind of schedule.

In the short-term, a full-time nanny or a robust roster of capable babysitters could provide some flexibility. But, with the exception of a couple of families who have had nannies since their children were young, I know few who have managed to make either arrangement work.

As children get older, bigger and heavier, many nannies cannot do the lifting, repositioning and other physical care. Babysitters grow up, move on to real jobs and to real lives.

I have spent much time working on a solution for our immediate needs. Finding someone reliable usually buys me a few months, but then something comes up and I am forced to start again.

The long-term issue is so depressing that I have ignored it—although I recognize that is no longer a responsible option.

So, as I listen to our friends and acquaintances talk about their increasingly free lives, I get that isolated feeling I used to get when parents talked about their children learning to walk, talk and pass other milestones. It’s another reminder that no matter how much we try, we live a very different reality.

Ijeoma Ross is a freelance writer in Toronto who blogs at Disabled Families.

Tuesday, December 16, 2014

Former client helps youth gain independence

By Louise Kinross
Gabriella Carafa is a social worker in our LIFEspan program with a long history at Holland Bloorview. Since she was a preschooler she's been a client in our neuromuscular clinic. As a teen she volunteered on our youth advisory and as a mentor and more recently she worked at our university-based Independence Program as a youth facilitator, mentor and social worker. BLOOM talked to Gabriella about how she got interested in working in children’s rehab.
BLOOM: What are your memories of Holland Bloorview as a child?
Gabriella Carafa: I always enjoyed coming here because it was such a welcoming place, even though the clinics were long and we’d sometimes spend the entire day (or what felt like the entire day for a child!). I didn’t come here often—once a year for my clinic appointment. I also went to the dentist here and had my orthotics made here.
BLOOM: What was the greatest challenge for you growing up with a disability and using a wheelchair?
Gabriella Carafa: There weren’t any challenges until I became a teenager. Then I started to realize my life will look different from my friends, who don’t have disabilities. They’re going to backpack around Europe and if I need to do that I have to bring someone with me—like my mom or an attendant. At that point I didn’t know how to manage being away from home for more than one night. I needed to learn skills to live independently and that’s why I went to The Independence Program (TIP) at Holland Bloorview.
BLOOM: What was the most important thing you got out TIP?
Gabriella Carafa: I learned that independence doesn’t mean doing everything for yourself. It means making decisions for yourself. So I could have an attendant come and help me with my morning routine so that it didn’t take three hours, but only one hour.
A lot of youth feel they have to do everything themselves and that if they don’t do it themselves, it doesn’t count. Once you go to college or university or are working or volunteering, you’re not going to want to spend three hours getting ready in the morning. At TIP they said: ‘Yes, you can do this now, but when you have a job and kids and are married, what time are you planning on waking up?’
BLOOM: What other things did you learn there?
Gabriella Carafa: I realized how much stuff I didn’t know. I was 18 and I didn’t know how to make a grilled-cheese sandwich. At home I was like ‘Okay, I want grilled cheese’ and my mom would make it. At TIP they said ‘Okay, so how do you make grilled cheese?’ It was a lot of practical things. The bigger thing was realizing I could still reach all my goals. My life would look different, but everyone’s life looks different. No one has exactly the same life as anyone else. I’ve still managed to accomplish great things.
BLOOM: How did you decide to become a social worker?
Gabriella Carafa: I chose social work because I wanted to be able to work one-on-one with clients and families, but also to tackle larger macro policy issues through advocacy. I’ve always wanted to work with individuals with disabilities and working here was great because it’s my way of giving back to the organization. Not only am I a social worker, I’m someone with a disability and someone who got services here. I feel I have a different understanding.
BLOOM: How does your firsthand experience aid you?
Gabriella Carafa: In social work we have something called ‘use of self’ where the therapist can bring parts of themselves into the equation. So if you have a good therapeutic ‘use of self’ you know when to share things, when it will help build a stronger therapeutic relationship, and when not to, so you don’t make it about you. People tend to feel like they can ask me questions.
BLOOM: What do you do in the LIFEspan clinic?
Gabriella Carafa: I see clients and their parents, often together. They’re coping emotionally with the transition to adult services. Most of the families feel like Holland Bloorview is their home and a lot of services are centralized here, or at SickKids, as opposed to in the adult system where services are scattered at different hospitals. Some of my work involves equipping clients and families with advocacy skills to navigate the adult system.
A lot of it is about funding, about connecting with the Ontario Disability Support Program or Developmental Services Ontario. They want to know what’s possible with housing options, relationships, sexuality.
I strongly encourage clients to go to our life-skills programs because I find youth often don’t know what they don’t know. Our life-skills programs can help them see what their strengths are and what they need support with as well as what their life may look like in the future.
BLOOM: Who do you work with?
Gabriella Carafa: I work with a youth facilitator, a life-skills facilitator and a nurse practitioner. We all work together as a team.
BLOOM: What’s the most challenging part of your job?
Gabriella Carafa: That I can’t change everything and increase the resources out there. In general I find that services are lacking and I wish there was more I could say or do. It’s hard when families say: ‘It’s not enough, what are we going to do?’ They’ll say ‘How does anyone live on the money you get from the Ontario Disability Support Program?’
I find families and clients want to be heard, they want to feel listened to. I focus on client and family strengths. Families are incredibly resilient. It’s not about empowering families—they already have it inside them. They just have to figure out how to use the skills they already have. They’re already powerful.
BLOOM: What do you like best about your job?
Gabriella Carafa: Being able to see a client and family at their first appointment and then over the next three years watch them become more comfortable with transitioning and building their skills. Sometimes clients will start coming in with their parents and then later they come in alone and if they’re able to do that, that’s what we want. In adult services they need to be able to manage appointments and problem-solve. I’m part of that journey with them.

Monday, December 15, 2014

BLOOM media roundup

Happy Monday!

Looking for a read that will make you think? Check out the disability and parenting stories we've collected recently. Let us know if we missed a good one! Louise

Forget what you know about disability Channel 4 video

Singer Viktoria Modesta is part of British Channel 4's Born Risky campaign, aimed at challenging viewer stereotypes. She wears 'artistic' prosthetic limbs made at The Alternative Limb Project.

This amazing father created his own school for his injured daughter Viral Nova

When his newborn suffers a severe brain injury after being shaken by a nurse, this father opens a school in New York for kids with brain injuries.


Silence wrapped in eloquent cocoons The New York Times

After spending 35 years in an institution, Judith Scott, who had Down syndrome, was rescued by her twin sister and went on to become a world-famous fibre artist whose work is showing in the Brooklyn Museum.

A teenager with big dreams CTV video

A boy with a rare disease that leaves his skin as vulnerable as a butterfly's wings and in constant pain raises $80,000 to grant wishes for others with his condition. 

And the beat goes on Cincinnati Children's Hospital blog

A music therapist records the heartbeats of dying kids and incorporates them into songs that parents can keep.

The day some of my son's class snubbed his birthday Chicago Tribune

'When my son with autism turned six, only one kid from his class came to his party.'

My son is black. With autism. And I'm scared of what the police will do to him
Medium

'Yes, less than an hour after hearing my son has autism, I took into consideration what it means when he interacts with a cop.'


How to hear voices that are seldom heard Video

Researcher Sara Ryan speaks at the Transforming Patient and Staff Experience Conference at Oxford University in November. Her son Connor, who had autism and an intellectual disability, drowned in a bath unsupervised after having a seizure in a special unit in a British hospital.

North Korea's disappeared: Regime 'performs experiments on disabled people before leaving them to die' The Telegraph

North Korea is 'cleansing' its population by leaving disabled infants to die and sending people with disabilities to a remote village or using them for medical experiments, a defector says.

Why is Reginald Latson being denied the support he needs? 
The Washington Post

A police officer questioned a youth with autism who was sitting outside a library, waiting for it to open. A scuffle ensued. The young man was convicted of assaulting a police officer and is languishing in solitary confinement.

Oversold prenatal tests leading to abortions Boston Globe

Companies are overselling the accuracy of a new generation of prenatal tests and doing little to educate expecting parents or doctors about the significant risks of false alarms.

Friday, December 12, 2014

'You get the one you're supposed to'

By Kari Wagner-Peck

When my husband Ward and I started dating I was 42 years old and he was 29. Yeah, I have a trophy husband.

We eventually wanted a child. We briefly explored fertility counselling, but after I cancelled our introductory appointment with the clinic—twice—I had to explain to Ward that I didn’t want to be pregnant. A biological child wasn’t important to me. Understandably, it took a while for my husband to come to terms with the fact that adoption would be our path to a child.

We couldn’t afford to adopt internationally so we decided to go the route of state adoption. It was simple really: we wanted a kid and the state had free ones through their foster-care program. We attended their classes and entered into the Byzantine world of state adoption.

What followed was months of excruciatingly close calls and near misses: we kept hearing about children who might be available for adoption—but turned out not to be.

Almost nine months to the day our adoption classes ended we stood next to each other in our dining room listening to a voicemail from Cathy, our foster-care worker. It went something like this:

“Hi guys! I met someone today who may be a match for you. He is a beautiful boy who is two years old and (pause) he has Down syndrome. Let me know what you think.”

What? Hadn’t we made it clear the biggest disability we were capable of handling was a child who was left-handed or colour-blind? We were first-time parents and we weren’t sure of our skill set (of course you don’t need a skill set, you just need to love your child, but we didn’t know that then!).

“Did she say Down syndrome?” I asked Ward.

“We better listen to that message again,” he said.

We played it six or seven times, until we were absolutely convinced she had said Down syndrome.

“I don’t know why, but that doesn’t bother me,” said Ward.

“Me neither,” I said.

We were silent for a few minutes.

“Do you feel calm?” I asked. “Because I feel strangely calm.”

“I do, too” he said. “Everyone has something. We just know what his something is.”

He was right. Everyone in foster care—and really in life—has something that makes them more vulnerable.

We talked a little more and realized there must be a reason we both felt this sense of calm. It wasn’t logical. It wasn’t planned. Something had happened that made us calm.

We decided to trust it. That was the extent to which we considered Down syndrome at that moment.

I called Cathy back and told her we were interested.

Then I started researching online. Googling ‘Down syndrome and adoption’ brought up mostly Christian adoption websites. Many people who choose to adopt an infant or child with Down syndrome do so as a part of their religious practice. That wasn’t us.

I was shocked by one fact I learned in my search: upwards of 90 per cent of women who discover they’re pregnant with a fetus that tests positive for Down syndrome abort. I had no moral judgment about their decision. I did, however, find it interesting that we were considering an option most people would reject.

I called a couple of friends who I remembered talking about families they knew with a child with Down syndrome. Without exception, the first thing anyone talked about was grief. These stories were essentially the same: they were about parents not getting the child they had planned on—the one without Down syndrome.

I spoke to a woman who had a teenage son with Down syndrome. She was shocked we would consider this: “I love our son,” she said, “but I wouldn’t seek it out.” She added: “I wonder if you will end up grieving who he could have been, too?”

“What about who he is?” I wanted to say.

I’d known about our kid—as I’d started to think about him—for only a few weeks then, so I was surprised that what she said made me angry. I was already feeling protective.

When we shared the news of our adoption with friends and family we found out what people really think about kids with Down syndrome. No one said “Hey, awesome you found a kid!” Instead, we heard “Why do you want to do that to yourself?” or “That sounds hard” or “Don’t do that, please.”

These reactions got to me and I started questioning things. I shared my concerns with my husband. He wasn’t moved by any of it. But I just couldn’t stop. Every few days I had some new tidbit of negative information about what to expect when you’re adopting a child with Down syndrome.

The last straw was when I told Ward that I’d talked to a woman who said she and her husband still changed their son’s diapers—at age 13.

“So, do you think you could change a 13-year-old’s diaper?” I asked, baiting him. “I mean, really, could you?”

“If it was just any 13-year-old boy, no,” he said. “But, if it was our son, I could.”

That was the heart of the matter. This boy wasn’t just any boy. This boy would be our son.

“Hearing all of these doubters and reading the information is frightening,” I said.

“So stop listening to it, kid,” Ward replied.

And that’s exactly what I did. I stopped my online searching. I stopped listening to other people’s fears, anxieties and doubts. Instead, I began to wonder about the emotional life of my son, who I hadn’t yet met. Children in foster care don’t get there by having stellar families. I thought a lot about how we might help our son overcome his own feelings of anxiety and fear and loss.

A social worker who was a 20-year veteran of state adoptions told us early on in the process: "You get the one you’re supposed to."

She couldn't have been more right.

This post is a compilation of pieces originally published on Kari Wagner-Peck’s blog
A typical son. She’s now homeschooling her son Thorin (in photo above centre, with Mom and Dad), who became part of the family at age two and is now eight. Kari has a master's degree in social work and is a freelance writer and development consultant. She and her family live in Portland, Maine.

Wednesday, December 10, 2014

Is newborn euthanasia an answer to parent pain?

By Louise Kinross

I was surprised to see this headline on a CBC The Current story yesterday:
Newborns should have the right to die, ethicist says. Can newborns assert their rights?

The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.

One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.

He wrote
a paper defending euthanasia of some infants with severe, terminal conditions.

During the CBC interview, the
Dutch Groningen Protocol is referenced. The waters get muddy here as this protocol supports euthanasia not just for infants who will die imminently, but for those who have a poor prognosis and expected quality of life. For example, “a child with the most severe form of spina bifida will have an extremely poor quality of life, even after many operations,” write the authors of this paper describing the protocol in the New England Journal of Medicine.

Spina bifida is not a terminal condition (please see
Deliberate termination of life of newborns with spina bifida, a critical reappraisal)

The CBC interview doesn't make clear that the practice in the Netherlands includes euthanizing newborns with severe disabilities who are not terminally ill.

Udo argues that “once professionals have decided that further treatment would be futile and it’s a hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”

Udo is referring to the process whereby nutrition and hydration provided by a nose or stomach tube is stopped and the child dies within days or weeks.

In 2013 the Royal Dutch Medical Association made a similar argument in
a policy (click on English press release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”

Typically, Dutch pediatric medical ethics and law in children’s treatment decisions are based on “the child’s best interests”—not parent interests.

At the time, I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children’s Hospital, if the argument to include “parent suffering” as a basis for a child's treatment decision is problematic.


The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. “Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected.”

Dr. Stephen Liben, interviewed on CBC yesterday, disagreed with Udo Schulklenk that relieving parent suffering is a rationale for newborn euthanasia. 

What Udo is speaking to is the suffering of the parents who are watching their child die and it’s true, we can’t remove that suffering," said Dr. Liben, director of pediatric palliative care at Montreal Children's. "Children for the most part aren’t in pain, but the parents are in pain.

“The argument is being made that if you just end their child’s life now, their suffering will end sooner. I think that’s an argument that’s na├»ve... Is their suffering really over because their child has died? The suffering of the health-care professionals ends pretty quickly, we move on to the next patient...But for the families, how do we know how they feel years later, when a mother looks at a handicapped child smiling and laughing…and thinks ‘my goodness, how could I have asked the doctors, or allowed them, to end the life of my child?’”

When brain scans show severe brain damage in a newborn, Dr. Liben said, the decision is sometimes made to stop tube-feeding. But predicting how a newborn will be affected by brain injury is imprecise. 
“We're not really good at predicting what’s going to happen,” Dr. Liben said. “We have an idea of what the damage is, but we don’t really know for weeks and even years...to know how those kids will be.”

Dr. Liben was asked whether parents ever change their minds when they’ve chosen to withdraw artificial feeds from their infant. “I’ve seen that several times now,” he said, explaining that in these cases “we start the feeds again” and the children have lived, though "I don't know what's happened to them 20 years later.

“I’ve also seen parents change their idea from Oh, my poor child, this is so horrible” to returning two to three years later to say “The doctors have to do more. I love my child, he’s handicapped, but he...interacts with the world.”

Rather than talking about euthanasia, Dr. Liben said we need to “improve access to palliative care. “I’ve been doing this for 20 years and I shudder to think of what could happen” if euthanasia of newborns was practised.

“Given the way healthcare really works—the way it isn’t all studied doctors and nurses who are comfortable with these things without prejudices in their own minds left, right and centre. Things don’t happen rapidly and equally. The real world out there is there aren’t ethical committees that rapidly convene with intelligent people discussing things all day long.

“This is not what goes on across the country and if the law changes it applies to everybody and I think there’s way more harm than good. Looking at our healthcare system I just see that it would be abused. Is it just coincidental that it’s going to be a cheaper way out for government and for certain hospitals that are under pressure? I don’t have confidence enough in the human factor that we can manage this humanely.”

Take a listen to the CBC piece. Much food for thought.

Tuesday, December 9, 2014

'You go to places you never thought you could'

By Louise Kinross
 
Life with children with disabilities and chronic health problems is complicated. It can be traumatic and a source of heartache.

But it can also be life-changing in a positive way, says Laura Kerr Meffen, mom to Emily, 16, who has a rare metabolic disorder and multiple disabilities.

“With Emily it was kind of a tragedy and a grief, but I’ve had so many positives with having her in my life,” Laura says. “Sometimes you feel guilty that you’re using your child’s disability or a trauma to have positive experiences. Or people think you should be grieving and sometimes you aren’t.”

She better understood her experience after attending a workshop last month at the 2014 conference of the Ontario Association of Children’s Rehabilitation Services.

“They talked about something called posttraumatic growth and it validated the feelings that I had and gave them a name and a positive spin,” Laura says.


Posttraumatic growth in parents and pediatric patients is a review of 26 journal papers on positive psychological change that results in parents or children after a child's traumatic medical event (including cancer, prematurity and acquired and congenital disability).

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

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

Laura says the concept of posttraumatic growth helps to explain her experience parenting Emily.

“I guess the biggest positive is that I’ve changed my life to recognize the small things, the little things that other people take for granted. I know now that life is not about money or career. It’s about doing things that make me and my family happy. It’s about being with friends and family who make you feel good and surrounding yourself with those people.”

Laura says that her decision to leave work to care for Emily full-time was initially hard, “but then I made myself a life as a professional special-needs mom. I think it’s okay to have positive feelings about that and to feel like my child is unique and special, and so am I.”

Laura says she’s grown in ways she never would have without Emily. “You become an advocate, and you go to places you never thought you could, meeting people you never would have otherwise.”

An example is her participation last year in the
Easter Seals Drop Zone fundraiser where she rappelled down an 18-storey office building (see photo above of Emily and Laura dressed as a “Super Mom Hero”).

Laura advocates for and develops recreation programs for people with disabilities by sitting on a Markham Parks & Recreation committee and on the Markham Sports & Recreation Accessibility Committee.

She’s also played a key role in fundraising and writing grants to support the first universally accessible schoolyard in Markham at James Robinson Public School. This is a community school her children attended. “The playground will be accessible to all,” Laura says. "It will have an accessible outdoor classroom, an accessible stage, sensory and community gardens, loose play with pine cones, rocks and pots and pans, and play equipment that is connected by a paved serpentine trail with ‘calming bumps’ for wheelchair users,” Laura says. The group has raised over $100,000 to date for the project and needs another $100,000 to cover the play equipment, Laura says.

She hopes the study of posttraumatic growth helps parents understand that all of their emotions raising children with disabilities are valid. “It’s okay to have positive feelings and it’s also okay to grieve. I’ve grown, and it’s important for parents to know that we can be empowered and have positive outcomes raising our children.”