Ben Kalenjuk has won an Achievement Award 2016.
Eugene Kalenjuk thinks he’s the luckiest Dad in the world! He and his wife Sharon are parents to three children – Ben, Emmalea and Gabriel.
The oldest, Ben, was diagnosed with Fragile X syndrome at nine years old, and autism at three and a half.
Despite these challenges, his parents describe Ben as the most happy, caring and sensitive boy who has incredible resilience and faces up to every day with positivity and joy.
Eugene and Sharon nominated Ben for a Fragile X Association Achievement award because of his tenacity and willingness to push himself way outside his comfort zone so that he can achieve to the very best of his abilities. Ben attends mainstream school, has a supportive group of friends, plays cricket and soccer, and loves his extra curricula activities such as art and music.
Ben’s father Eugene says he couldn’t be more proud of his son. “I so often forget just how large the gap is between Ben’s world and our ‘normal’ world. He works so hard to achieve in a normal world, and that is an extraordinary outcome”, he says.
One of the strategies that Eugene and Sharon use to support Ben is to teach him that there is always another way to get to your outcome. Recently, Eugene showed Ben a water feature then he blocked a part of it so that the water had to take another course. But the water still ended up in the same place. The water feature is an excellent analogy for Ben’s approach to life – pick a plan and if it doesn’t work, try another way. It doesn’t matter how long or which way you take to get there, you will get there in the end.
While nowadays Ben has a great passion for life, he has had his share of setbacks over the years.
“For a while it seemed as though life for Ben was half a step forward for three steps back. He faced challenges at school, in therapy and bullying from other children, and not surprisingly, he took it all very personally.
“After considerable support and encouragement from us, particularly his mother, Ben now trusts that we are there for him and that we love him. He understands that ‘getting there’ is a process and that he needs to keep practising to achieve his goals”.
When asked if they had any advice for other parents raising a child with Fragile X syndrome, Eugene and Sharon said that whatever the issue, find another way.
“Try and think outside the box for solutions and work out if the issue is actually a problem for your child, or is it a problem for you. That may be a tough question to ask yourself, but it’s amazing how often this is the case”.