11-year-old ABI survivor starts website to spread awareness

BY: MERI PERRA

Remember this great kid?

Last month, 11-year-old Andrew shared his story of acquiring a brain injury as a result of a stroke for our #areyouaware campaign. If you read what Andrew wrote, you know that his story is beyond powerful – his stroke occurred just this past winter, and he is facing more brain surgery in the upcoming months. But none of this stopped Andrew from heading back to grade five as soon as he checked out of Holland Bloorview, finishing his school year, and then wanting to give back.

Andrew asked his parents if he could have a website for his 11th birthday. While Andrew says, he was “just joking around” his mom and dad took his request seriously, and with some parental guidance, Andrew recently launched www.iloveyourbrain.com.

“It’s for kids who have brain injuries, so they know there are other kids who have brain injuries,” Andrew said.

Andrew wants to reach out to other pediatric stroke survivors in particular, since he says he has never met other kids who have acquired a brain injury as a result of a stroke. According to the Heart and Stroke Foundation, three to six kids per 100, 000 in the 28-days to 18-year-old age bracket will experience a stroke, which is a higher incidence rate than brain tumours.

“Not just only older people and adult can have strokes, but kids can have them too,” Andrew said.

The statement, ‘You don’t know how strong you are until it’s the only choice you have‘ is in the centre of the home page of www.iloveyourbrain.com, and strikes a chord with Andrew’s bravery during his recovery. Andrew says his mom, Nadine Vermeulen, found the quote on-line, and he also has a t-shirt with the statement on it.

“You need to be strong to survive things and fight things,” Andrew said.

Andrew and his family

Due to his recovery, Andrew’s summer activities are fairly limited right now, though the tough 11-year-old does have stuff going on. He is playing golf, and The Whitby Major Mosquito A baseball team, the Chiefs, are letting him practise with them this season. After a chance encounter with his mother, a former Colorado Rockies pitcher who lives in Andrew’s neighbourhood is going to toss the ball around with him, too.

Meanwhile, Andrew says his brain injury has – understandably – impacted his friends and family. He said before his stroke, his friends were pretty good at wearing bike helmets, but his brother was not.

“Well, he does now,” Andrew said.

To find out more about pediatric stroke and get support, contact the Canadian Pediatric Stroke Association. The Heart and Stroke Foundation has a resource guide for parents of pediatric stroke survivors. And be sure to check out Andrew’s website: www.iloveyourbrain.com

Andrew and his mom Nadine

Meri Perra is the communications and support coordinator at BIST.

Brain injury and youth sexuality: Q&A with Caron Gan

Along with colleagues from Holland Bloorview Kids Rehabilitation Hospital in Toronto, Caron Gan, a registered marriage and family therapist, will host a workshop — Sexuality, Safety & Smarts on Feb. 21. The workshop will touch on topics such as meeting people, dating and healthy relationships, effects of brain injury on sexuality, safer sex and Internet and social media safety.

Gan spoke to BIST about some of those issues.

Caron Gan/Submitted

BIST: Have you run this type of event before? What is the usual turnout? Do people get embarrassed talking about the topic?

Gan: We offer this workshop every two years. This is the fourth time we have offered it. We usually get 30 – 40 participants.

This topic tends not to be embarrassing for the youth and young adults as discussions around friendships, dating, and relationships are typically of interest with this population. It tends to be more embarrassing for the parents than the youth.

BIST: For children and youth with an ABI, what are some of the common challenges and issues they face with sexuality?

Gan: Early sexual development or late sexual development can occur after an ABI. For example, an eight-year-old girl starting menstruation versus age 12 or 13. Their body may have developed prematurely — young gals getting breasts and menstruating much earlier — and emotionally they may not have caught up with way they feel physically. That can be quite distressing.

Sometimes there’s the other end as well, where 17 or 18-year-olds have very few of the characteristics, like body hair for example. That can be very embarrassing if they are in gym class.

A young person might have limited or incorrect knowledge around common physical and emotional changes that accompany puberty and adolescence. They may have missed out on sexual health education, or may not have fully grasped the material due to learning challenges. They may have trouble having friends and fitting in with peers. There may be issues with their body image, self esteem and peer acceptance. They may be vulnerable due to an ABI’s impact on social judgment and impulsivity. Their social and dating skills may not be well developed due to the ABI. They may be socially isolated. They may want to date but have limited life and sexual experience. They may have trouble explaining their ABI to others.

Their ability to control impulses may be more affected, so we may see more anger issues or people blurting things out when they shouldn’t be blurting them out. They may not recognize social boundaries and not know they are in somebody’s face, talking too close or touching people inappropriately. Their social skills may be a little bit off. They might say things that are kind of rude or offensive and make off-colour jokes.

To listen to a CBC radio piece on teens and sexuality, featuring Caron Gan, click here and then click each link to download the segment. You may need to convert the file to an Mp3 if you are using an Apple computer.

BIST: What do the friends of a person with an ABI need to know to help them help their friend?

Gan: I think it’s good to involve the friends in the education process early on so they do understand what’s going on and the changes in their friend and how best to support them. When they don’t understand that’s when there can be all kinds of judgments and misinterpretations.