During Cerebral Palsy Awareness Week we look back on how The Greater got involved in establishing the Ignition Mentoring Program with Cerebral Palsy Alliance in the Hunter in 2008. This story, written in 2009, shows the positive change the program made to 10 teenagers, their parents and our staff, who took the time to care.
By the end of the night there was hardly a dry eye in the house. More than 40 people had gathered at Belmont 16 Foot Sailing Club for a special celebration late last year. Many of these people did not know each other 12 months ago but had been brought together in what was a life changing experience for many.
The dinner marked the completion of the first Ignition Mentoring Program in the Hunter. This unique program matches teenagers with Cerebral Palsy (CP) and other physical disabilities with an adult mentor.
Joining the teenagers and their mentors at the dinner were the kids’ parents and other people involved in making the program a success. The easy chatter and laughter made it sound like a gathering of a close family or people whom had been life long friends.
Program co-coordinator Meredith Hudson said as presentations were made, stories were shared about how the program had made a difference to people’s lives and photos from the year were shown, there was plenty of laughter, applause and quite a few tears.
“There were some very proud parents that night, many of whom I think were genuinely amazed at the improved confidence and abilities of their children and delighted by the special bond they had developed with some one who was, less than 12 months ago, a complete stranger,” Ms Hudson said.
Ignition is an initiative of The Spastic Centre (now Cerebral Palsy Alliance). Ms Hudson said the program aims to build confidence and resilience in teenagers. It was started in Sydney several years ago, as a world first. NBN Television newsreader and co-ordinator of the station’s We Care Program, Melinda Smith, is also vice chair of the Hunter Youth Mentor Collaborative, the region’s umbrella organisation for youth mentoring organisations. Ms Smith was approached by the Spastic Centre to help establish the program locally. She says the Greater Building Society jumped at the chance of being involved.
In May last year the teenagers met their mentors, mostly volunteers from the Greater’s staff, for the first time at the Greater’s headquarters. They met another 12 times in that building, always as a group, for a couple of hours after work. Each meeting offered a chance for the mentor and mentee to catch up as well as take part in discussions, facilitated by Ms Hudson and her colleague Paul Campbell, on relevant topics.
Ms Hudson recalled the first meeting.
“Everyone initially looked like deer trapped in headlights but it didn’t take long for some truly amazing friendships to develop.”
She said the students are at a stage (like any other teenager) when they are looking for positive role models. Importantly for some kids with a disability, in this program students are emotionally and socially accepted, not by parents, carers or health professionals, but by someone who looks beyond their disability and chooses to be with them.
‘Mentoring builds confidence and gives the young people another viewpoint when appreciating their abilities and what they want to achieve in life.”
Some weeks the group would just do a fun activity to challenge and inspire the kids. They tried archery, painting, and “ran around like crazy” playing laser skirmish at the old Maitland Gaol. The ambitious activity that brought the entire group closer together was an overnight trip to Sydney. The mentors, their kids and several Spastic Centre staff stayed in apartments in Darling Harbour and took in the surrounding sites.
“During those 36 hours not only did the bond between mentor and mentee strengthen but the kids formed stronger friendships with each other that hopefully will continue beyond the program.”
The mentors all reported getting a great deal out of the program. Many got much more than they expected. One mentor said the program gave her the inspiration and confidence to leave her long standing job and follow her passion to become a family day carer.
While disappointed about losing a staff member, the CEO of the Greater Building Society, Don Magin, who attended the dinner and one of the sessions, says he is amazed at what the program achieved. The feedback he received from parents was overwhelming. The Greater has committed to being involved this year and is currently recruiting its next group of mentors for a new group of teenagers.
“I am extremely proud of my staff as well as the teenagers and their parents for what they have achieved through this very well run program,” Mr Magin said.
“There are now more people in the Hunter who understand and can break down the stigma people with disabilities such as cerebral palsy face in their everyday lives,” he says.
Most importantly, the feedback from the kids who participated in the program has been very positive. "I can now have better conversations about my feelings and my disability" one participant said.
Melissa Bannister is the mother of 15 year old Josh Clarke. She says, understandably, that she had mixed feelings about the program initially but was becoming increasingly concerned that Josh had issues with self esteem, confidence and socialising.
An informal parents’ group facilitated by Mia Christiansen, from a local organisation called First Chance, was “an unexpected bonus” for her and her partner Michael. Ms Bannister says it was a social occasion, a source of valuable information, and a chance for reflection. She got to make some new friends, learn from other parents and discuss topics relevant to bringing up a teenager with a disability.
“Other parents have often been the best source of information and inspiration to help us to manage Josh’s condition,” she said.
She said the main lesson she has learned from the program is to be less protective. The program offered a safe environment in which she could “let go” a bit more and see some huge changes in Josh.
“I can already see Josh is happier with himself, more independent and willing to express his opinions.”
“When you are a parent of a child with a disability there is a temptation to think that you have to always try and make everything better, but sometimes you can’t.”
“I will always be there for Josh but I have realised that I can’t be too over-protective.”
Although the year long program has ended, most mentors and their teenagers have kept in touch and a reunion is planned for the end of this year. Like many catalysts for positive change, all it took was some initiative, a little bit of funding, and a few people willing to give something different a go.
Di Sneddon from Singleton is the mother of the eldest young person in the group, Charles. He has a rare condition called Klippel Trenaunay. Ms Sneddon says there are a lot of support services for a small child with a disability and their parents. As a child grows that network disappears.
“I think there is general consensus that by the time a child with a disability hits their teens the parents have got it all together. How wrong,” Ms Sneddon said.
“There are so many new issues that arise with a teenager with a disability such as high school, new friends, competitive sport, the opposite sex, alcohol, drugs, peer pressure, driving, socialising and making independent decisions about their future,” she said.
Ms Sneddon got involved in the parent group because “she had an hour to fill in while Charles was doing his thing.” She says she has never laughed so hard in her life but also found some helpful advice.
“What the books tell you to do and what people do in their own homes are sometimes worlds apart.”
She says she found strength and inspiration in some “pretty amazing” parents who, in many cases have sacrificed careers, interests and a large part of their lives for their child.
She is extremely proud of Charles whom she says is an incredible human being, wise above his years and has taught her so much about the things that matter in life.
“I walked away from the parents’ group…knowing that I had helped raised the sort of person people admire for all the right reasons - disability or no disability.”
THE MENTOR AND MENTEE
Drew Etheridge is a 15 year old who doesn’t let his disability stand in his way. The energetic and inspirational teenager has Aperts Syndrome, caused by a sporadic mutation of a gene, which has played havoc with his bone growth. He was born with fused fingers. He has had numerous operations to create fingers on his hands and to rebuild his forehead. He will undergo further surgery this year.
Drew, who is into motorbike riding, was always first into any of the activities. He said the program was great because he got to meet some new people, particularly his mentor Scott Jackson.
“I liked talking and hanging out with everyone. I made some new friends. It was better than I thought and it was helpful to talk about some issues affecting teenagers.”
When drawn on the importance of mentoring for kids with a disability Drew says he thinks all kids can benefit from mentoring. It was another lesson for this author from this young man.
Scott Jackson says he really enjoys Drew’s company and has made a good friend. Drew and the other teenagers have taught him some valuable life lessons. He is impressed by the way Drew doesn’t dwell on his disability.
“These kids have real issues but they push them aside and get on with life. Drew doesn’t focus on small, petty things or let things get him down. He gets the most out of every experience.”