Wednesday, December 3, 2014

After the fall

By Louise Kinross

Today is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

The Crash Reel is a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin’s close-knit family, which includes four brothers, one of whom has Down syndrome, and the gruelling rehab that follows.

BLOOM: What is it like to have two children with disabilities?

Pia Pearce: What’s even more interesting is that in addition to David having Down syndrome and Kevin having a brain injury, my husband Simon and sons Andrew and Adam have dyslexia, so my whole adult life has been about special education. I have a doctorate in education. So it’s interesting how life turns out and we all get what we need.

BLOOM: How did having children with disabilities influence the way you responded to Kevin’s injury?

Pia Pearce: I think it was incredibly helpful to me. I had learned, over the course of time, a lot about patience and acceptance and a lot about understanding differences.

Even though David, who has Down syndrome, didn’t have major health challenges, we started early intervention with him when he was only three months old. I feel I was very fortunate in many ways with my background in education and experience with the medical field.

I had learned that you can take things that can be challenging and difficult and see a silver lining and a positive side to them. For example, my husband, who didn’t do well at school, was a huge success at home and his family celebrated all the things he was good at.

BLOOM: What kind of prognosis was Kevin given early on?

Pia Pearce: We were never given definitive information because all brain injuries are different and everyone’s rate of recovery and ability for recovery is vastly different. When we were at the rehab hospital there was a floor for patients with spinal-cord injury and a floor for those with brain injury. It was surprising to learn that everyone with a spinal-cord injury seemed to have a very similar recovery process but with brain injury there was a huge variation.

BLOOM: How long was Kevin in hospital?

Pia Pearce: He was in intensive-care for 28 days and a step-down unit for six days at the University of Utah and then he was in the Craig Rehabilitation Hospital in Denver for three months.

BLOOM: How did Kevin end up in Denver when you live in Vermont?

Pia Pearce: When Kevin was in intensive care, a good friend of ours said he’d help by doing research on rehab hospitals. He spent a lot of time on the Internet and making phone calls to other parents whose children had been in rehab. He determined that Craig Hospital would be best and then my husband and son Adam and our friend went to visit Craig Hospital and made the decision.

BLOOM: How were you able to pack up and move to Denver?

Pia Pearce: I was very lucky. It’s amazing how things fall into place and friends step up when you need them. One of my closest friends from my first year in college lives in Denver and she had a friend who had a house available. The house was on the market and they said that until it was sold, they were more than happy for us to stay there. It wasn’t far from Craig Hospital. So Simon and I moved there and our son Adam decided to take a year off from his job to be with Kevin every day in therapy.

BLOOM: The bond between Adam and Kevin really came out in the film.

Pia Pearce: They were very, very close before the accident and Adam knew exactly what would motivate Kevin. Because of the lack of insight that comes with brain injury, when Kevin came out of intensive care he thought he was way better. He wanted to go home. Adam was with him all day, every day, in therapy and was able to bring humour to the situation and make it bearable.

BLOOM: As a parent, what was most challenging?

Pia Pearce: We’re coming up on five years and Kevin is still working on his recovery. Kevin has always been very particular about the therapists he worked with. He either really liked them or he didn’t. One of the hardest parts was finding the right therapist that was best matched for Kevin.

Kevin’s had a terrible time with double vision and trying to find people to help him with his vision has been a major struggle. He’s hugely excited right now because he’s finally working with a doctor in Atlanta, Georgia who specializes in brain injury and has helped enormously.

I feel really fortunate that Kevin has been so motivated about his recovery. He was born a very determined little boy. He came out into the world with perseverance, determination and wanting to work hard and that’s why he got so good at his sport. He then took those gifts and talents and applied them to his rehab. I think the hardest thing for parents would be having a child who doesn’t feel motivated and who gets discouraged easily—and the amount of extra support that child would need.

BLOOM: What helped you keep a positive mindset?

Pia Pearce: I can’t say enough about family support and the hospitals we were in valuing that part of the process and including our whole family. I didn’t have any experiences of places where we as a family were pushed aside and that would have been incredibly difficult.

I was able to support Kevin because I was getting support from my family.

I think family support, in all different ways, is critical. I learned early on that it was better if fewer people were with Kevin, because he got easily overwhelmed. I come from a big family and I had to ask them not to come and tell them they were supporting me by not coming. Some of our family was front and centre, taking shifts with Kevin and rotating. To other people I said ‘This is a marathon, not a sprint, and we’ll need you later.’

BLOOM: Families here say they often receive tremendous support initially but then people go back to their own lives.

Pia Pearce: It’s hard for others to sustain that kind of support when it’s not something like a broken leg that gets better in six weeks. For other people, your situation falls off their radar. The same is true for the friends of the young person. Kevin was very fortunate to have very good friends. But I’ve talked to other parents who were desperately unhappy that the friends of their son or daughter were leading their child astray, minimizing their injury and saying things like ‘You’re okay. You can come for a drink.’

BLOOM: Some parents say they have to mourn the loss of the child they once had to accept their child after brain injury.

Pia Pearce: I have to be totally honest and say that wasn’t a big issue for me. I didn’t see any value in going there. Or maybe it’s what we talked about earlier—that because I’ve had so much experience with accepting differences, my focus is on acceptance. We’ve worked forever with our son David, who has Down syndrome, on accepting who he is.

I’m a firm believer in the importance of feeling your feelings and feeling the grief. I’m not about denial.

However, there was a lot about Kevin’s extreme snowboarding that was nerve-wracking for me. So I thought at least I don’t have to go to those events and stand at the bottom of those mountains freezing cold and full of anxiety. What he was doing snowboarding was very hard for me.

The other big thing was that even though he had setbacks, overall he kept getting better.

BLOOM: Some people with brain injury have a change in their personality. Was this the case with Kevin?

Pia Pearce: Some of Kevin’s friends would say he’s quite different now. But I just experience who he is now and in some ways he’s more open and communicative than he was before and more aware of how blessed he is and how important it is to live in the moment.

I understand the sense that the person isn’t exactly the same, and some people with brain injury change more than others. It’s good to acknowledge one’s feelings about who the child was in the past, but getting stuck on them isn’t very helpful.

My present moment is so full and busy I don’t see the value in choosing to spend a lot of time grieving what was or could have been. I was amazed that Kevin did as well in snowboarding as he did. Maybe if I had been the parent who wanted more than anything for my son to win a gold medal in the Olympics, I would have felt differently. But that wasn’t the important thing for me.

BLOOM: What would you recommend for parents who may be stuck in grief?

Pia Pearce: Support groups for caregivers are very helpful. I’m also a big fan of talk therapy.

BLOOM: In the film one of Kevin’s friends talks about how their roles shifted. Kevin used to be like his big brother and mentor, and now their roles are reversed. Have roles in your family changed?

Pia Pearce: I’m the mom and I’m still the mom and I’ll always be the mom! My role hasn’t changed. Adam’s role changed the most. Adam and Kevin were in the world of competitive snowboarding together and travelled together. They went from being brothers and best friends to one being so injured and the other being part of the caretaking team.

I think it’s important for family and siblings and friends to adjust their expectations of the person with brain injury, based on the ramifications of the injuries. I remember a therapist said it was hardest for parents when they didn’t get enough information from doctors so that they could adjust their expectations realistically.

BLOOM: What kind of brain injury did Kevin have?

Pia Pearce: He had an injury deep in the centre of his brain. He had to relearn everything—to swallow, walk and talk. It was like starting over with a baby, but on this warp speed. The major issues were memory, his balance and vision. He still has a lot of problems with double vision.

BLOOM: Kevin’s brother David, who has Down syndrome, plays a central role in the film.

Pia Pearce: A number of people say that David is the secret star.

BLOOM: I agree! How important was David’s plea that Kevin not return to competitive snowboarding because he didn’t want him to die?

Pia Pearce: Kevin and the other boys are very independent-minded and I realized that if I put on too much pressure it wouldn’t be helpful. But David could speak from his heart and Kevin could really hear him.

BLOOM: In one of the most moving parts of the film, David talks about hating Down syndrome.

Pia Pearce: David has a therapist and we’ve worked on that in therapy. We’ve always told David we want him to love who he is. Kevin, Adam and David have taken the film to the National Down Syndrome convention and other self-advocacy events and focused on the theme of acceptance. It’s had a very positive impact and David now is able to say that he does accept his Down syndrome.

It has been hard for him to make close friends—not so much in the elementary grades, but as he got older. More recently he has a close friend who he’s calling his girlfriend and that’s making a big difference in his life.

BLOOM: Does David work in your husband’s business?

Pia Pearce: He has three part-time paid jobs. He works in our glass-blowing business, and at a payroll agency and at our local fitness centre. He loves to work out at the fitness centre and they employ him in the operations department folding towels and filling soap dispensers.

BLOOM: What did Kevin find to replace the joy he got out of snowboarding?

Pia Pearce: He does still snowboard, but he does it for pleasure. He goes where it’s safer, where they have deep powder. He’s more aware of what a huge risk it is.

The biggest thing for Kevin and Adam right now is the foundation they started called Love Your Brain. They want to improve the quality of life of people living with brain injury. Their big push is offering free yoga classes to people with brain injury and their support workers. They’ve got pilot programs in Vermont and New Hampshire. Kevin has benefited so much from yoga and mindfulness meditation.

Kevin and Adam were just speaking to 900 managers at a Lululemon conference in Vancouver about partnering with them to promote yoga.

BLOOM: The film covers Kevin before and after the injury. Did you begin work on it before his accident?

Pia Pearce: No. We had a lot of family footage we’d taken and when Kevin began rehab, Adam and my husband Simon were great at having a camera around all the time. The doctor said that Kevin wouldn’t be able to see how he’s getting better, so it would be important to show him through video. We were able to give that footage to the director, Lucy Walker.

BLOOM: Has participating in the documentary helped or harmed the healing process for your family?

Pia Pearce: The process has been hugely helpful to Kevin and David. I can see how much it’s also helping other families who watch the film. That’s been a fantastic feeling for me: to take something that’s been so incredibly challenging and difficult and stressful and have amazing, positive things come out of it. One of the things I was happy about was that when we watched the rough cut I felt it was really honest. I felt it was an honest, accurate portrayal of who we are and how we dealt with it.


Great interview Louise - what an amazing mom!