Down syndrome ad makes light of 'special needs'

Tuesday is World Down Syndrome Day. Italy's CoorDown, a national group representing people with Down syndrome, released this humorous ad that questions the euphemism "special needs," suggesting people with Down syndrome merely have human needs. Go to www.notspecialneeds.com to learn more about the rationale for the campaign, which was produced by Publicis New York. Meow!

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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. 

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'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.

This post initially appeared on Keith McArthur's blog.

Bryson
Baseball and Belonging
My Father’s Day Pledge

Hunter
Penguins games therapeutic for Carnegie toddler with rare gene mutation

Aislinn
Aislinn’s Treasures: Just Grin

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A brother's story inspires safe haven for play

By Louise Kinross

Daniel Scott (above left) coordinates Holland Bloorview’s Ronald McDonald playroom. The early childhood educator also runs the hospital’s children’s advisory—a group that includes kids as young as three weighing in on how we provide care—leads parenting workshops and facilitates a night for siblings of children with disabilities. Daniel—known for his dapper bow-ties—has an older sister who developed epilepsy as a teen. We talked about how his own experiences as a child in the medical system inform the environment he creates for families in our playroom.

BLOOM: Tell us a bit about your sister.

Daniel Scott: Samantha (Sam) is 10 years older than me and she was typically developing until she began having grand mal seizures at around age 13. She lets out a guttural scream before she has it, then she collapses and has convulsions. The seizures last for about two minutes and then she’s unconscious for five to 10 minutes. When she wakes up she doesn’t know where she is or who anyone is. It usually takes several hours before she starts to remember details, and sometimes parts of the day never come back to her.

BLOOM: That must have been frightening.

Daniel Scott: When I was really young the seizure itself was very scary and it comes out of nowhere. You can be anywhere and it can happen at anytime. Once I was in the car with my sister and mom and one of my best friends and I had to explain to my friend what was going on and try to help her understand and try not to be embarrassed. And all the while I was still worrying about my sister.

BLOOM: What kind of treatment did she get?

Daniel Scott: This was in the '90s and the medications that were available then turned you into a zombie. When Sam was in high school she ended up on a lot of heavy meds. She said it was like walking through a thick fog everyday and you couldn’t focus on anything and her memory was basically non-existent. She was failing classes. 

Once she had a giant seizure in the middle of our high school. She was walking into class and fell into a door frame and split her face wide open. After being publicly humiliated as a 17-year-old girl, the doctor sewed her bangs into her face. Then the nurse stuck herself with a needle so my sister had to go back in for HIV blood testing. I remember the doctors being incredibly inconsiderate and blunt and not supportive in the way they delivered news. Often times they would say: “We just don’t know.”

BLOOM: How did Sam’s seizures affect your family?

Daniel Scott: My mom was a single mom and she worked all the time to try to afford being a single mom. It was challenging. My sister and I were alone a lot and there was always the chance I had to be ready to call an ambulance and make sure everything went okay. When my mom worked nights, I often went to stay with my grandparents and dad, so I wasn’t doing everything. Sam was seen at SickKids and by other specialists so there were a lot of long drives back and forth from my hometown of Minden to Toronto and sitting around in waiting rooms. My mom was great at coming up with car games to pass the time, but once we got to the specialist's office, there was nothing. If there had been a playroom it would have been a lot easier for us. Playing video games for an hour would have been great.

BLOOM: Did they ever find a treatment that helped your sister?

Daniel Scott: When Sam was 20 and had graduated from high school she made a conscious choice to come off all medications. She said she’d rather have monthly seizures and be able to remember and function. In her thirties she found a better blend of medication and the seizures also seemed to subside. She’s now married with two children. My brother-in-law has only seen three seizures in the 10 years they've been together, so I’m still the main point of contact if she has one. I've also tried to help my niece and nephew understand what to do if she has a seizure while they're home alone with her.

BLOOM: What is your role in the playroom?

Daniel Scott: Our goal is to build a warm, welcoming, therapeutic play environment that’s a safe haven in the hospital. It’s a safe space away from the clinical world. Siblings can come here to get away from boring appointments and waiting rooms and patients can come before, after, or in-between their appointments. 

We make the environment as non-medical as possible so that they can get away from whatever is bringing them to the hospital medically. Some families use the playroom as a reward: if their child gets through a tough therapy session they know they get to come to the playroom afterwards. Parents feel more comfortable talking to me because we have a different dynamic. I’m not a clinician or doctor or therapist.

BLOOM: What do parents talk to you about?

Daniel Scott: We’re often the first place parents come after getting a diagnosis for their child. We talk about things they’re struggling with. Working as part of our client and family integrated team is a great opportunity to be a hub for families. I can direct them to the family resource centre and to people and places where they can find the resources they need to help them on their journey. I don’t know all of the answers, but I can point them to someone who does.

BLOOM: Can you tell us about the sibling nights you organize here?

Daniel Scott: June Chiu developed the concept over a decade ago after seeing her children go through the medical world while their sister was a client here. She knew that I understood what it was like and we worked on it together in the years before she retired. 

I love it. It’s an opportunity I wish I’d had as a kid to share stories in a room where other people get it. One of the big pieces I advocated for is a panel where parents can hear adult siblings talk about their experiences. It’s so important to see what coming out on the other side can look like for siblings. 

We share our stories and what our experience is, and then parents ask questions. The first year they were incredibly candid, like ‘Do you resent your sibling?’ or ‘Do you resent your parents?’ They were very concerned about how traumatic the experience could be. We aren’t necessarily representative of the whole sibling population, but in general we said it has been challenging, but that we love and respect our brother or sister so much. I admire my sister’s courage and I think we’re so much closer as a family because of what we’ve been through. My mother and sister and I are each other’s support system.

BLOOM: Siblings also play an important role in the children’s advisory council you lead.

Daniel Scott: We had horrible medical experiences working with my sister and I’ve seen what bad client care looks like. Part of what I’m dedicated to is being the best we can be at delivering client care. It’s all about the way things are presented and how they’re handled. The children’s advisory is an opportunity for kids to be part of the change process. It recognizes that siblings are often here enough that they know just as much about the system, and can inform our decisions as well, as the clients and parents can.

Here's a more current picture of Daniel and his sister Sam.

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Ho ho, humbug? Toy shopping is hard for special-needs parents

By Julie Brocklehurst

There's a natural desire to pass family traditions down to the next generation, and I always thought I would… until my son, Brennen, came along, rocked my world, and changed how we do things, including the Christmas holidays, entirely.

For the first couple of years of Brennen’s life, I would dread going to toy stores. Who am I kidding? I still do. I avoid them at all costs, knowing that there is very little available that Brennen can “play” with.

Christmas shopping has become a challenge, and though I try to resist it, every year I inevitably find myself in a toy aisle, tears streaming down my face with the realization, once again, that I am living in a starkly different world. While I dream of wrapping up the one thing my child will adore, the one thing that will attract his attention, ignite his creativity and give him opportunities to play and learn and grow, it is unfortunately not that easy. 

Finding products and toys that will work for Brennen is difficult. I look at items, analyze their potential, and ultimately decide that they are not suitable—that he can’t physically manipulate them on his own, and will be a complete waste of money. Sometimes I will purchase the toy anyway, in hopes that some miracle will happen and his skills will improve. 

Sometimes I just want to feel like any other parent shopping at Toys R Us, who can pick out a present for their child without having to stress about whether or not it will be used for its intended purpose, or be added to the pile of stuff that goes into a closet and never comes out.

Christmas is different with a child with special needs. Brennen can’t write a letter to Santa. He can’t tell me anything that he would like to ask for, or what he hopes to find underneath the tree on Christmas morning. He can’t get up in the middle of the night to exclaim his excitement that Santa has come, and he can’t unwrap his own gifts. 

I don’t even know how much he understands about Christmas or Santa Claus or traditions or magic, but we do it anyway. We bring Christmas into our home and we celebrate with all of the things that a little boy should have around him—love and light and wonder and joy. We do it for him, and we do it for us, as a family. 

It is important for Andrew and I to carry on with some of the things that meant a lot to us growing up. We love Christmas! I still get giddy thinking about my favourite Christmas songs (so many I can’t pick just one!), favourite Christmas movie (It’s a Wonderful Life), and favourite Christmas treats (my Mom’s (used to be Nan’s) apricot raisin cake).

My most cherished Christmas memories from when I was a child are never related to a present. They are memories of going to mass on Christmas Eve with my father and grandfather, Dad reading The Night Before Christmas to my sister and I no matter how late it was (every year until we moved out), having turkey dinner on Christmas Day with my Mom’s family, and a sing-along at my parents’ annual blow-out Boxing Day party (that is still a tradition today!). My favourite memories revolve around people, family, spending time with loved ones and celebrating the holidays together. This is what matters most to me, and this is something that I can continue with my own little family. 

Brennen enjoys the sights and sounds of Christmas. He loves to look at the twinkly lights on the tree, and we have Christmas music playing constantly. He is happy when he is surrounded by people, and he certainly knows that he is loved.

We have also started some new traditions. On Christmas Eve, instead of going out, our family and friends now come to our house to see Brennen before he gets tucked into bed for the night. Our schedule of events now includes the Janeway Children’s Hospital Christmas party, Easter Seals Breakfast with Santa, and the Rainbow Riders Live Nativity. These have quickly become our favourite and most anticipated events of the season!

We don’t go overboard with gifts. On Christmas morning, we take time to help Brennen unwrap each one, enjoying the sound of ripping paper, and the anticipation of what’s coming next! We focus on the importance of what the holidays are truly about—family and togetherness, kindness and giving, magic and wonder. 

 
If I were to give advice to parents of children with special needs this Christmas, I would have to say not to put too much pressure on yourself, and don’t expect things to be ‘perfect.’ 

The holidays are stressful for all parents, but our children’s special needs add an extra degree of difficulty. Try not to get caught up in the details, and just enjoy the time with your family. It may not look the way you had envisioned it, and it may not run as smoothly as you had hoped, but it can still be special. Focus on the positive things, and think of all the things you are thankful for. Find happiness in your child! 

Bruce Templeton, who has visited with 1,500 children dressed up as St. Nick, writes in The Man in the Red Suit: "It's your presence with your family that matters a whole lot more than anything that's under the tree. It's your presence, not presents that counts."

Julie Brocklehurst is a writer, an advocate and a mother to a little boy with cerebral palsy. She created her blog Tiptoeing Through as a place to share some of her thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Every month in her Tulip Tales series, Julie features a child with special needs from Newfoundland and Labrador and shares their amazing story. Julie is a director on the board of the Cerebral Palsy Association of Newfoundland and she runs a child care program for children with disabilities.

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'I was raising him on my own'

Here is the second video in A Family Like Mine, a new BLOOM series covering diverse families raising children with disabilities. 

Meet Joshua Bennett, 17, who’s heading off to Georgian College to study automative business. Joshua has cerebral palsy and was raised by his mom Roma. “When you’re a single parent, you tend to have to do everything yourself,” Roma says. “So, it wasn't only going to appointments, medical appointments. It's going to school appointments and being challenged by the teachers who may think that Joshua's not going to do very well in school, and so challenging them back… I’m a mama bear and I thought differently.” 

See how Roma did it and hear Joshua’s advice for other kids with disabilities. 

*This video is captioned. Click on the CC at the bottom right on Youtube.

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How you rate BLOOM

By Louise Kinross

What do people most often read on BLOOM?

“Real family stories” is the most popular content on our blog and in our magazine and e-letter, according to our summer survey that drew 189 respondents.

“It is great from a parent perspective to know you are not alone and there are so many common threads to parenting special needs children, no matter what the disability,” one respondent wrote. BLOOM “celebrates real families and highlights their strengths and their journey” wrote another.

In answer to What topics do you read most on BLOOM, “Real family stories” ranked first, followed by Disability news, Parenting tips, experiences and resources, Growing up (life skills), Research and Disability rights and ethics. Ranking lowest were Role models, Respite, Books and Friends. Of course this is  the perspective of the almost 200 people who filled out the survey. It will help guide our focus in the future, but you can continue to expect a wide range of articles on BLOOM.

When asked what you would like to see more of, Disability and education, Fun and recreation, Travelling with a disability, Disability and employment and Apps and technology scored highest. You said you were least interested in adoption and accessible clothes.

In terms of conditions you want to read more about, developmental disabilities rated highest, followed by cerebral palsy, communication problems and mental illness.

Respondents said they are most interested in print stories, less interested in photo galleries and inspiring quotes, and least interested in video.

Facebook, YouTube, Twitter and LinkedIn are the most used social media networks among respondents. Given that 85 per cent of BLOOM’s social referral traffic comes from Facebook, we launched a new BLOOM Facebook page recently and plan to focus on that network the most. Please visit and "like" us to get regular updates.

Of survey readers who had children, 27% of those youth are under age eight, 57% are between nine and 20 and 16% are over 20. Professionals make up 28% of all respondents and 5% are adults with disabilities. In terms of visiting the BLOOM blog, 31% said they come once a month, 23% a few times a month and 20% visit once a week or once a day.

Most respondents live in Canada, although readers from the U.S., France, Switzerland, Honk Kong, Argentina and New Zealand also filled out the survey. Only 62% of you receive the BLOOM e-letter, and most prefer to receive it monthly. Click here if you'd like to sign up (you can remove your name at any time).

Thank you for sharing a broad range of publications and websites you enjoy on disability and parenting. There are too many to name here but we will outreach to them and add them to our sites of interest in the future.

Our respondents were generous in providing feedback on the BLOOM e-letter, magazine and on the blog in general. Here is a small sampling of your suggestions.

“Superb writing, articles and editing. Interesting intelligent, insightful and compassionate. Local and international. Reflects diverse experiences socio economic and cultural. The content also often challenges existing stereotypes and attitudes and social constructs and societal beliefs about disability!!! Celebrates real familes and highlights their strengths and their journey!”

“Bloom needs its own Twitter account!”

“I LOVE the BLOOM newsletter! It is always informative, insightful and inspiring! I am always so happy to see it in my in-box and I try to read it right away.”

“I love the print version of Bloom—I was sad to hear it was being discontinued—such a great resource to physically share with other families...”

“Try to avoid duplication of print and online articles and stories.”

“The content of BLOOM is excellent. But often times, it is very difficult to read the whole long article. I would appreciate if they are shorter.”

“More articles on what parents would find useful from a professional.”

“Companies that make useful products for people with disabilities.”

“Please name and describe scientists, students, funding sources, partnerships and publications more fully and accurately.”

 “BLOOM is super as it is! Keep up the great work! And a huge heartfelt THANK YOU. I really appreciate and benefit from the BLOOM blog.”

“Would appreciate accessibility for videos (captioning or a transcript).”

“You're doing a magnificent job. BLOOM keeps me connected to the larger disability community and I really appreciate that. It's not just one silo and I think that's really important.”

 “Please discontinue sending printed copies to every staff member; it is not environmentally responsible.”

“I think BLOOM is amazing and covers so much relevant information that is so helpful and useful. It is also great to get the international perspective as I don't think there is another newsletter that has that type of coverage.”

I would like to see more opinion from the editor. Once in a while a hard-hitting opinion piece about policy would be great.”

“I look forward to reading BLOOM’s offering every day when I come into work (I’m on the West coast so it’s in my box by the time I arrive). I find it a very useful look at the way parents think and a corrective sometimes to my own biases.”

“It’s a great compilation of news, advice and personal stories. I always find several articles to read, learn and ponder in BLOOM. And almost every issue has a story or observation with which I identify as a parent. It’s so reassuring to know there are other parents working through the same issues, struggling, succeeding, sometimes failing, but moving forward as best we can.”

As an update, in response to your comments, we are no longer producing the magazine version of BLOOM. Print and postage costs were expensive and we want to capitalize on reaching people online. We will be launching a Twitter account in the near future. We know we need to caption our videos. We don’t have a dedicated resource for this but are working on it.

Thank you to everyone who took the time to provide such rich input on what you like and don’t like about BLOOM, and how we can improve. You also provided us with a ton of amazing story ideas which we plan to follow up on. We are very grateful!
 

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Wanted: Dads raising kids with disabilities

By Louise Kinross

Matt Swan has been raising his daughter Leah, 16, on his own for over seven years. Leah was born with spina bifida and hydrocephalus and uses a wheelchair and g-tube. Before he separated from his wife, Matt worked from home so he could be primary caregiver. He’s eager to connect with other dads of kids with disabilities, particularly those who, like him, have full custody.

BLOOM: How did you react when you learned Leah would have disabilities?

Matt Swan: I didn’t know she would be disabled until the week before she was born. I was still trying to process it when she arrived prematurely. She was taken away in an incubator and the neurosurgeon started telling us what her disabilities would mean.

It was like getting repeatedly punched. ‘She’s going to be in a wheelchair.’ Punch. ‘She won’t be able to feed herself for the rest of her life.’ Punch. ‘She’s not going to talk.’ Punch. ‘She’s going to be mentally retarded.’ Punch. When you get punched that much you go numb.

BLOOM: What did you do?

Matt Swan: My wife was recovering from a C-section so I left the hospital for a walk to collect myself. It was a beautiful autumn day and all the leaves were turned. The one question that kept circling in my mind was ‘Why me? What about all the healthy children who were born to people who didn’t want kids? Why did I have to have a child who was disabled?’

I’m not a religious person, but it occurred to me that Leah being born into our family was some part of a grand design because she needed parents who could give her a good life. The light switch went on: ‘I’m going to do my best to show her the beauty of the world and give her the life she deserves.’ I made my peace with it.

BLOOM: What about Leah’s mom?

Matt Swan: She didn't have that moment like I did. I think she had trouble accepting and coping with the reality of Leah's condition. I arranged to work from home so I could care for Leah and take her to all her appointments. She had about 25 surgeries in the first three years, so it was really difficult. The stress took its toll on our relationship.

BLOOM: How is Leah affected by her disabilities today?

Matt Swan: She uses a wheelchair and is diapered and g-tube fed. Psychologically she’s about the age of a five year old. She goes to public school and is in a special class.

She has words and sentences. She doesn’t say much, but I know there’s a lot more she’s processing than most people give her credit for. She often surprises me with things she remembers. Some people don’t understand her speech, but I know what she’s saying.

She loves to watch Sponge Bob and America’s Funniest Videos. Her iPad is like an appendage to her.

She’s a beacon of light. She’s so happy, funny and positive that everyone who meets her falls in love with her. She’s a joy to be around. I’m tremendously proud of her.

BLOOM: What was it like to become a single dad?

Matt Swan: It wasn’t really an adjustment day to day, because I was used to her routine: bathing her, sending her to school, feeding her, changing her diaper, taking her to appointments. One of the challenges I’ve faced is being accepted as a parent. When it comes to single-parent families, everyone assumes the mother has custody and is the primary caregiver. I get a kind of shocked, stunned look when I tell people.

I also realized the system was quite different for single dads. In the first year we were visited about four or five times by Family and Children’s Services to do welfare checks. A government worker even suggested that it wasn’t appropriate for a single man to raise a little girl. I was appalled. Do single mothers go through this? I don’t think so.

There were other hoops, too. The child tax benefit was automatically going to my ex-wife. When I called Revenue Canada to tell them I had full custody of our daughter, they said I needed letters from her school, teacher, doctor and a notarized letter from a lawyer. After producing all this documentation, I asked what my ex-wife had to do to get the benefit: nothing, they said, just apply.

Seven years later, I still get appointment letters from hospitals addressed to my ex-wife, even though we’ve moved and Leah’s mother lives out of town. Leah’s had five surgeries since last October and her mom showed up for just one of them. The entire time the doctors and nurses addressed her directly and didn’t even acknowledge I was there. Finally I took one of the doctors aside and said ‘It’s fine for you to talk to both of us, but you should know I have full custody of my daughter and she lives with me.’

BLOOM: What would you say was the biggest challenge?

Matt Swan: The greatest challenge for me is the networking part. All parents of kids with disabilities feel like they’re working in a bubble, and no one really understands what we go through. There are a lot of groups for single parents of kids with disabilities but I’ve gone to a couple of them and I’ve been the only man there. At first I’m treated suspiciously: ‘What are you doing here?’ Then I often get sympathy.

I just want to go to these meetings to network, because the system is so big and complex. I need to find out about services and learn what everyone else is doing. But because I’ve been the only man in the group, I’ve often felt awkward: the moms connect with one another in a way that I’m not able to. I usually ask a few questions, listen to other experiences, take notes and leave early.

I’ve looked for single-dad groups but I’ve yet to find one that’s for single dads with kids with a disability. I do feel like an endangered species.

BLOOM: Even though you were used to being Leah’s primary caregiver, it can’t be easy doing this on your own.

Matt Swan: People often say: ‘I don’t know how you do it. It must be so difficult.’ It’s difficult for any single parent, regardless of their child’s level of ability. Leah’s routine is all I know. I don’t have any other children. I don’t feel it’s any more or less difficult, it’s just different.

I work from home, and juggling my family life and work duties can be a challenge. I sometimes feel stretched thin, tired, trapped or frustrated. I had an accident with my van in July and it was written off. It was our way of getting to appointments, so for the past month and a half I haven’t had a vehicle. Getting around has been an even greater challenge.

But when Leah and I are on the couch watching TV together, or when I tuck her in to bed at night and she’s lying there with this little smile on her face, it just makes me melt. I don’t regret any of it, seeing her happy and hearing her laugh.

BLOOM: Does Leah have friends?

Matt Swan: Yes and no. She has people in her life that she likes but she won’t go out of her way to play with them. She likes to be on her iPad.

BLOOM: I understand you became a family leader at Holland Bloorview?

Matt Swan: Since we moved to Toronto six years ago I’ve found the most support being part of Holland Bloorview. I get to meet other people and after a while I see familiar faces and people recognize me and Leah and that’s fantastic. They really get it. 

BLOOM: What advice would you give other single dads?

Matt Swan: Get out there and get connected, which is true for all families. As men we’ve been nurtured to be tough and strong and act like nothing bothers us, but that’s completely not true. We see our kids suffering and we do get emotional. It is tough some days and it’s difficult to work through those feelings. You have to have someone to talk to. I talk to my family and friends on the phone. But I don’t usually talk to other parents of kids with disabilities.

I use respite when I can. At first it was difficult for me because I felt like I was validating everyone’s suspicions that I can’t take care of my daughter. After being scrutinized by Family and Children’s Services it left me wondering whether dads are inferior parents. I just don’t believe that’s true. I miss her when I put her in respite, but you really need that time as a parent. You have to take care of yourself. Leah doesn’t get homesick and she adapts so well to new people and situations. She looks forward to her time away.

BLOOM: Are you interested in starting a group for single dads raising children with disabilities?

Matt Swan: I am. I’d love to hear from other dads raising kids on their own. I can’t be alone out there. It’s important to have that support. Even though we’re under societal pressure to fill this ‘tough guy’ male stereotype, we still have worries, doubts and confusion. The system itself is very confusing. It would be great for us to have a meeting to share experiences and ideas, even informally, like over a game of pool.

Matt Swan can be reached at canaderik@gmail.com

 

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What do you read most on BLOOM?

By Louise Kinross

Almost 200 people responded to our 2015 BLOOM survey earlier in the summer. We will report more fully on the findings, but I wanted to share with you the results to our question: What topics do you read most on BLOOM? Click on the image above to see the results clearly.

I don't think it's a surprise that "Real family stories" was most popular, followed by "Disability news," "Parenting tips, experiences and resources," "Growing up (life skills), "Research" and "Disability rights and ethics."

Thank you to everyone who took the time to tell us what they like, don't like and want to see more of in BLOOM!

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