Parenting a child through trauma
Survival tips from a family that’s been there
Sasha Ferriman, 16 (right), with his mom Lies a year after discharge.
Photo by William Suarez.
Sasha Ferriman was an active 15-year-old who loved sports. While snowboarding in 2006 he slammed headfirst into ice to prevent hitting a child who had wandered onto the landing of a jump.

Sasha’s parents – Lies and Bill – arrived home to learn that their younger son had been air-lifted on life support to the Hospital for Sick Children in Toronto. He remained in a coma for 10 days. A month later Sasha began seven months of braininjury rehabilitation at Bloorview Kids Rehab. “We were shell-shocked,” Lies says.

BLOOM talked with Lies about coping strategies her family developed over the next year – tips that can help any family supporting a child with a traumatic injury and related disability.

What were the greatest challenges that first year? Initially the situation was so extreme. He was an athletic, sporty kid and to see him lying there with tubes coming in and out and a neck brace, not able to do anything and in diapers again – it was horrific really. You want him to get up and be okay, but you can’t think of the big picture, you have to focus on the small steps. That was very difficult for me because I like to plan and organize and look ahead.

Keeping a personal journal and writing down our daily routine helped me to focus on the tiny steps. Wow. One day he opened his eyes. Another day he tried to write something on a piece of paper. I also kept a binder of photos and medical reports and cards as a way of recording his progress.

The other thing I would recommend from the start is to reach out to other families who have gone through the same thing. You feel so alone and you’re trying to deal with your own grief and that of the other family members, and you need to hear what other families are doing, how they’re coping. Get out to support groups. Knowing that someone else understands what you’re going through is comforting. Talking about the situation is so much better than keeping it inside.

At Bloorview, social worker Bob Mason recommended we read Crooked Smile – a story about how brain injury affects one family. As I was reading I kept thinking “that’s us.” Those connections are important.

What was it like when you moved to Bloorview? It was strange going into that environment of rehab – almost surreal. There was a huge amount of juggling and it was hard to pop in and out of that world as we also tried to manage things at home, keep abreast of what our other child was doing, deal with the laundry. My husband or I stayed with Sasha each night.

My advice to other parents is that you’ve got to do something for yourself and for you as a couple. It’s natural to feel guilty when you take a break, but you must so that you don’t fall apart. Go out for a cup of coffee somewhere. Meet a friend.

Keep up with anniversaries and birthdays. My sister came and stayed with Sasha so my husband and I could go out for dinner for our anniversary. We ended up talking about Sasha but it was nice and we almost felt “normal” again. Taking breaks enables you to let your guard down and share your fears so that when you’re with your child you can stay positive and encouraging.

Write down a list of activities you can use help with – such as picking up dinner or dry cleaning. When friends ask what they can do, let them help. Let go of feeling guilty.

How was Sasha affected by his injury? He has left-sided weakness, limited use of his left hand and he walks with a limp. His speech is a bit slower than it was. At a cognitive level, he has issues with concentration, organizing his thoughts, problem-solving and self-monitoring. His personality has changed a lot. He used to be quite shy and reserved with adults, but now he’s very verbal and ready to talk up a storm.

How did Sasha’s injury affect the family? You have to be so aware that everyone has been affected – including your mate and other children. Sasha’s brother Ben feels the loss of the brother he knew very deeply. We get focused on the patient and the therapy and forget that brain injury dramatically alters the whole family dynamic. We have to take care of everyone’s mental health.

When you’re in the situation you don’t know the questions to ask and that’s where the network at Bloorview is really important. Speak to the social workers and caseworkers. Find out about the resources. Ben refused to go for individual counselling but we were able to get him to family counselling at Bloorview. In one session my husband and I just sat and listened to Sasha and Ben talk about Sasha’s injury and how it had affected their lives – particularly at school. Ben hated going, but once he got there he needed to talk.

What other advice would you offer families? There are so many months where no one is sleeping in the same house and that takes a toll. Something that helped us cope with rehab was taking Sasha home on the weekends. Sasha wasn’t walking yet but we were able to borrow a ramp for our steps. It was so great for everyone to have him home and it really helped motivate Sasha to get better as fast as he could.

Now that we’re home for good there are new challenges. The rehab is ongoing and Sasha is an outpatient at Bloorview. Sometimes he gets disappointed because he doesn’t see the kind of dramatic progress he saw at the beginning.

We’re starting to see some social challenges and have to make sure Sasha has connections. It’s very difficult. I cry, especially in the shower. But you have to stay positive for your child. You have to keep on going with things, use the help provided and keep an open mind. I like to read about research being done because I believe there’s so much still to be discovered about the brain.

 

RESOURCES

Peer Support A trained ABI survivor or family member is matched with a family coping with a similar situation for phone and e-mail support. (800) 263-5404.

Toronto Acquired Brain Injury Network Links to all Ontario brain injury associations.

Ontario Brain Injury Association Excellent catalogue of books and resources for the whole family!

Crooked Smile: One family’s journey towards healing, Lainie Cohen, 2004. Available at chapters.indigo.ca or call Bloorview’s library, 416 425 6220, ext. 3517.

 

‘Taking breaks enables you to let your guard down and share your fears so when you’re with your child you can stay positive.’

 

 

Rehab 101
Lies Ferriman shares her tips:

Write in a daily journal to document the tiny steps of progress.

Read about/connect with other families who have gone through the same experience.

Take breaks: go out for a cup of coffee, visit a friend, celebrate family anniversaries and birthdays. In order to best support your injured child, you need to get away to re-energize.

Write a list of activities you can use help with and let friends and family help.

Recognize the injury affects every member of the family and changes the way the family interacts.

Seek out counselling and family-support groups.

Bring your child home for weekends as soon as possible.

Adapting to brain injury

Caron Gan, a family therapist at Bloorview Kids Rehab, offers these suggestions:

Every family experiences feelings of grief, guilt, despair, anger and frustration. These are normal reactions to an extraordinary loss.

Physically, your child is still present, but emotionally it feels like you have lost the son or daughter you once knew. Give yourself permission to grieve.

Recognize that some people won’t understand the impact of brain injury and what you’re going through.

Share your feelings. Seek out family members, friends and brain-injury support groups where you can share your emotions.

Connect with other parents of children with brain injury.

Get educated about brain injury.

Recognize that family members cope in different ways.

You may not go through the same stages of grief at the same time. That’s okay!

Take breaks from brain injury.

Make a date with your partner or other children, or go on holiday where therapies and talk about the injury are suspended.

Focus on building a ‘new future’ as opposed to wishing you could turn the clock back.

Recognize that grief can recur when your child hits milestones — such as graduating from high school.

It’s natural to feel sad when you’re reminded of how things “might have been.”

Bloorview Kids Rehab | Bloorview’s Resource Centre