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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Courage Project: 'Accept things as they are'

A father, who we’ll call Bruce, contacted us about sharing his story in our Courage Project series. To protect his child, we have changed some identifying details.

Bruce and his wife were shocked when their firstborn child, a son, was born blue, resuscitated and transferred to a different hospital.

A breathing issue was later diagnosed as a heart problem, then other life-threatening conditions emerged. During the first few weeks a doctor from genetics came by and, without explaining why, began measuring the boy’s eyes, ears and face. Later it was announced that their son was deaf and had global developmental delay.

“After he was born my wife said ’He’s not my child,’ and those words have resonated with me every day since,” Bruce says. “She just couldn’t accept a son who was different from a regular baby. I tried to convince her that it was workable, that she would accept him over time, but she never did.”

Bruce worked long hours and travelled often. He arranged for caregivers to support his wife almost 24 hours a day and, when he was home, did most of his son’s hands-on care.

When his son was eight, Bruce was diagnosed with cancer. After an operation he began to spend most days at home. “That’s when I first began to suspect something. My wife was out most of the time and often a caregiver was left looking after him. When my wife was home, I’d hear screaming. I’d run into the living room and she’d be holding a slipper up and ready to hit our son because he’d wet his pants or was not cooperating with her attempts to dress him. He had some deep bruises on his legs, but she said he’d fallen. She stopped putting his splints on because she said he didn’t like them. She was supposed to be going to my son’s school to volunteer for the day, and then I found out that she popped in and left right away. I later learned she’d found another boyfriend.”

When Bruce confronted his wife he says she threatened to kill him and their son. “I went to the police and they arrested her. It took a hell of a lot of courage to make that decision. I was crying in the police station thinking about how she had abandoned both of us. How was I going to cope alone with my son’s needs?”

Bruce retired from full-time work to spend more time with his son and “the two of us get along fantastic together.”

His son lives with him but has one overnight a week with his mother. “When my son comes home from school, I’m there, and I work with him. I’m amazed at the progress he’s made these last few years.”

Bruce says a number of things gave him courage during this period. “My son is my courage. In his 12 years he’s been through a lot more than I ever could imagine. All the operations, all the blood tests, all the conditions he’s trying to beat, the prodding and the probing. I get courage from him.”

When his son was first hospitalized as an infant, it was a cleaning lady on the hospital unit “who gave me courage,” he says. “We were two months into this new world and more issues had been found. ’Don’t worry,’ she said. ’I’ve seen people go through this before, and you’ll become accustomed to it as time goes on. You’re not alone.’ She told me to focus on one thing at a time, that I can’t face the whole problem at once.”

Bruce says it’s important for parents to work on acceptance. “You have to accept the fact that your child is who he is and love him for who he is and not for what you want him to be. You can’t keep looking for answers. Once you accept things as they are, you realize there’s a new path open to you. For example, after working with my son’s teachers at age 11, he no longer needed diapers. My son's hands may be twisted with arthritis, but he can hold a pen properly and  wrote his name for the first time at age 12. I have lots of examples of how  consistent hard work and good teacher-parent communications have made small, positive improvements in my son’s life.”

Bruce says a support system is also essential. He has two close friends that he can call on if he needs a short break from his son.

The other key support in Bruce’s life was a social worker he saw at a children’s rehab centre. “She listened to me, and she helped me get through it. It was important that it was someone who understood our situation of having a child with additional needs.”

Part of accepting his son’s special needs involves being grateful, he says. “Coming to Holland Bloorview and SickKids I’m often struck by how wonderful it is that my son doesn’t have more severe disabilities or illnesses.”

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