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.