Faces of Erinoak
Jakob's Story
It was during a noisy family reunion that Fiona and Steven VanderWilp realized something wasn't quite right with their baby boy. Amid the boisterous gathering, little Jakob seemed unaware of the din. He didn't turn to the excited shouts or sounds, looking only at what was in front of him.
"When we got home, I sat him in front of the stereo speakers and turned on the radio. There was no reaction," recalls mom Fiona. "I slowly turned it up until it was unbearable for me. Nothing. I just sat there and cried. I held him and I cried."
An audiologist confirmed what Steven and Fiona already knew. Jakob was profoundly deaf. It would be the beginning of a journey with a surprising twist that continues to unfold. But at every turn, Fiona and Steven rely on Erinoak, a regional centre of excellence serving children and youth with physical, developmental and communication disabilities. Through Erinoak, Steve and Fiona's fears have turned to hope, and their tears to joy, at the strides Jakob has made.
One week after his first birthday, Jakob was fitted with a cochlear implant and, despite a disheartening start with Jakob terrified of the sounds he was hearing for the first time, the toddler adapted quickly. But at age 2½, his behaviour became aggressive and uncontrollable.
Jakob would ram his head into walls and hit himself in the head. He became attracted to certain movements, running in front of cars and swings. Repeatedly slamming doors, non-stop humming, hypersensitivity to certain fabrics, and refusing to eat were some of the disturbing behaviours that emerged.
He was hearing but words weren't meaningful. And while Jakob's audio-verbal therapist at the time believed the problems were related to his hearing and the implant, Fiona disagreed. She enrolled him in speech language therapy through Erinoak, where it became clear Jakob was autistic.
Today, a dimpled, blue-eyed Jakob, now 5, is a different child. With the help of a paediatric rehabilitation team of Erinoak experts - behaviour therapist, speech and language therapist, occupational therapist, social worker, family resource worker and music therapist - Jakob has thrived. He attends junior kindergarten where he loves to learn and where his therapists work with his teacher to ensure his needs are met.
At last count, Jakob had more than 300 words in his vocabulary, and plenty of signs for the words that aren't there just yet. Every day upon arriving at school, a loving Jakob doles out hugs when only a short time ago, he couldn't play safely with other children or even leave his home.
He can count to 31, navigate the computer, and has an uncanny ability to draw trains or create them out of chess pieces.
"He's a huge success story," says speech language therapy assistant Kathy Ludwig "Every session with Jakob, I just say 'wow.' He has come so far in such a short time."
And he has made these leaps even before beginning Intensive Behavioural Intervention (IBI), a highly specialized program for children with autism for which Jacob is on the waiting list. The Vander Wilps are among many families benefiting from a broad range of supports established in the past year for those waiting for services.
While Jakob qualifies for ongoing services through Erinoak's Multidisciplinary Program, his parents have taken advantage of additional workshops and support groups made available while he waits for IBI.
"The workshops have been invaluable in helping me understand Jakob's behaviour, the various therapy strategies for autism, and how to work and play with Jakob," says Fiona. "It's been an amazing journey of learning."
At the support groups, guest speakers provide insight into autism but also important, says Fiona, is what other parents have to offer. "They're the ones living it every day, all day. They're the experts. For me, connecting with other parents has given me perspective and a realistic spin on all that I've been learning."
Guidance on obtaining financial aid for the $9,500 in equipment Jakob wears, respite care – a full day of fun for Jakob, a break for mom – and extra at-home help are among other Erinoak services the VanderWilps depend on. "Everyone goes above and beyond," says Fiona. "It's like a big family. They help you and then you help others. It's wonderful."
Jakob's story highlights the importance of early identification for children with hearing problems. It's stories like his that inspired the development of Erinoak's Central West Infant Hearing Program (CWIHP), which has screened more than 100,000 children aged 0-2 for hearing problems since its launch in 2002. Glen Sutherland, CWIHP Manager, says it is crucial to catch hearing problems as early as possible in a child's life because the early years are a critical period for language and cognitive development.
"People who can hear tend to take communication for granted," Sutherland says. "But a child who can't hear might miss out on developing speech and language skills and be cut off from the world. We need to pick up on these problems earlier so we can start working with these children to get them off to a good start."
Sutherland says the program is helping to identify hearing problems in children as young as four months old whose disabilities might not otherwise have been noticed until they were much older.
Jakob's progress through Erinoak has been astounding – something Fiona couldn't have predicted those devastating moments in front of the speakers with the radio blasting.
"My hopes and dreams were shattered that day. I was scared to death. But now I can see that he's happy and that he is going to succeed at something. He's a delight. We have new hopes for Jakob. High hopes. And we have new dreams. Jakob is going to have a meaningful life."