Parent, advocate takes on role at London's Children's Hospital

By Louise Kinross

“It’s a dream job,” Darren Connolly says, and it’s a world away from the bank call centre where he once worked. Darren is the new family advisor of the Pediatric Family Resource Centre at Children’s Hospital at the London Health Sciences Centre in London, Ont. His role is funded by the Children’s Health Foundation at the hospital. Darren says that parenting his son Tyler, 11, who has cerebral palsy and complex medical problems, inspired him to want to work with other families on a similar journey.

BLOOM: Tell us a bit about Tyler.

Darren Connolly: He has cerebral palsy and is medically fragile. He’s g-tube fed, and won’t walk, talk or crawl. He’s in a wheelchair and needs help to do everything, including eating. Tyler loves Challenge Ball, bowling and the Easter Seals Camp’s high ropes course. Sometimes he just loves it when I don't speak, hold his hand and watch a Pixar movie. Tyler loves school and is fully integrated in Grade 6. He travels with an educational assistant and nurse.

BLOOM: How did you move from banking to the non-profit world?

Darren Connolly: I wanted to make more time for Tyler and I had a strong desire to get involved in the disability community. Almost seven years ago my wife Helen and I started a medical supply business. We knew firsthand that the price of products was so high and felt we could do something about it. At the same time I started volunteering with March of Dimes and Easter Seals and the Sunshine Foundation. I really enjoyed the advocacy and volunteering and decided I wanted to be involved in that side, rather than the selling of products.

BLOOM: What do you do as the family advisor?

Darren Connolly: We have 52 amazing parent volunteers and I coordinate our parent and family hours on the different floors. These are parents whose children have spent time in the pediatric critical care unit or months in the neonatal intensive care unit, and they want to give back. So they donate a Saturday night or a Tuesday afternoon. We set up snacks in a waiting room or the kitchen and sit with families and encourage them to meet other parents in the hospital and share stories. Sometimes we have guest speakers.

BLOOM: What’s available in the actual resource centre?

Darren Connolly: Our initial focus was books and brochures, but as technology has progressed and parents have connected online we have four computers they can use here. Parents can do research here or borrow a laptop from our lending program to Skype with family if they’re a long way from home.

One of the big things I do is connect families to community resources as they leave the hospital. For example, we have a Snoezelen room called the Smile Room that kids love. Once they leave, we want to encourage them to use outside resources, so I’ve connected them with a Snoezelen room run in the community by Community Living.

We also have a lawyer on site through Pro Bono Law Ontario and two law students. The students are available to help families fill out forms to apply for grants or funding. Sometimes those forms can be overwhelming.

BLOOM: What do you bring to the job as a dad?

Darren Connelly: Most of our family advisors are moms, so it brings a bit of balance, I think, to have that father perspective. We’re seeing more dads come by the resource centre and feel comfortable here. I had a meeting with a dad this morning. His family has a tough road ahead with their son and has lost a lot of hope. I was able to talk with him about living in the moment and not spending all of your energy worried about what’s coming, or what could come, in the future. I think he left encouraged and will come back.

BLOOM: You obviously have credibility with parents because you’ve walked in their shoes.

Darren Connelly: It’s all about lived experience. We’ve spent time here in the PCCU, in the NICU, in the trauma unit and on the floor. Our parent volunteers have experience from all areas of the hospital.

BLOOM: What’s challenging about the job?

Darren Connelly: One of the social workers took me on a tour of the hospital and the emergency department and we walked into a room and she said 'This is the resuscitation room' and I took a deep breath. I immediately went back to that time when my child was in that room and we weren’t sure what the outcome would be. That was hard. But at that point I realized I need to take this in and then let it go, allow it to float through me. You can’t build any walls with this job. It’s about being real and understanding the journey of the families and you need to embrace that. Even on the dad side you need to be a little bit vulnerable.

BLOOM: What has working in the hospital been like so far?

Darren Connelly: It’s a dream job. But at the same time you’re working in a very complex world. You’re not a doctor or a social worker. You’re a parent who’s walked the journey and you need to be really cautious that you don’t give any medical advice. I talk about the experiences we’ve had and the things that have worked for us, where there have been positive outcomes. Parents who are struggling want to hear about how you or other families got through a similar situation.