Do you have a child in a wheelchair? Either way, I am going to start this post with an embarrassing story.
I was eighteen at the time and out one night with friends at a nightclub when I witnessed a young guy there in a wheelchair. For some reason, I had personally never come across a wheelchair user before and I felt a flood of emotions at the time for him.
They were feelings of pity and compassion. I cringe now to think that pity was something I felt for him. But given that life was hard enough as an able-bodied person, I couldn’t imagine what it would be like to have the additional struggles of having a disability.
I saw him many times over the years but somehow never broke through my fear to speak to him or start a conversation. At the time, I didn’t think we could have something in common. What can I say? I was young and naïve.
Fast forward twenty years and now I have a young son with a wheelchair and it has hit me that some people may feel the same way when they see him.
They might think because he has a wheelchair, he is “different.” And that this difference means they can’t connect with him, even though the truth is this: inside he is just like every other human in the world, with a desire to feel accepted, appreciated and understood.
So what is it like parenting a child with a wheelchair?
On the surface level, it is no different from parenting any other child. You love your child. You want them to grow up to be kind, independent, happy and resilient.
Given that I also have an older daughter who is able-bodied, I can honestly say that we look beyond the wheelchair, and see our child for what he is: an individual, with his own hopes, feelings, dreams and journey to take. Like every other kid in this world, he has his own amazing and unique personality and thankfully an optimistic outlook on life.
Here are a few things I have learned over my years parenting a child with a wheelchair:
The importance of having good friends.
For some parents, having a good network of friends is a bonus. For me, it is my lifeline. My friends are fantastic and help keep me feeling optimistic and secure, because I know they are people I can turn to in times of need.
The importance of great friends for my child.
The surprise bonus of having a child in a wheelchair is that it’s usually the most compassionate and caring kids that are attracted to him.
They say that friends come and go but my son’s friends are so special we really hope they will stay. If not, we trust that new, great friends will come his way. We do our best to nurture these friendships outside of school because these friends are worth their weight in gold.
The importance of a support network.
Our lives changed in so many fabulous and dramatic ways when my son started playing wheelchair sports. He was introduced to a large group of friends who quickly became like family. We have met so many inspiring adults with different disabilities who are all living fulfilling lives, without allowing their conditions to hold them back.
And me? I got to meet other parents who understand the exact struggles I go through and they blow my mind with their tips, advice, love and unwavering support.
The importance of teaching resilience.
When my son was still young, I worried a lot about resilience. How does a child stay strong and confident when they have more than their fair share of challenges thrown at them on a daily basis? Most typical adults would crack under the same pressure and no parent wants to see their child break into pieces.
This question led to me writing an entire book about the topic of raising strong and resilient kids with special needs because I was so determined to raise a confident child myself, despite his additional challenges.
The moment of clarity came to me after a talk with Doctor G., an amazing parenting and youth development expert who was visiting my daughter’s school.
At the time, my son was in preschool and I remember breaking down in tears because I had no idea what was in store for my son in the future. However, Doctor G. said to me something so simple that the light at the end of the tunnel was suddenly visible for me again.
She said, “Every child just needs to feel loved, appreciated and BELIEVE THEY ARE GOOD AT SOMETHING. Give him something to be great at.”
Two years later my, son started wheelchair sports and he instantly excelled in this area. He was recruited to play with the adults on a national powerchair soccer team. He scored two grand finals wins in wheelchair rugby and his trophy collection quickly grew to include accolades like best and fairest and most valuable player. He had found his “thing” and it has filled him with a sense of pride, strength and purpose.
The importance of a strong marriage.
Life is hard enough for children with a physical disability without giving them unnecessary burdens to worry about, so my husband and I made a conscious decision to work hard at creating a harmonious home environment.
We want our home to be a place where our children can come home, relax and feel happy. We want it to be a safe space. I’m guessing we possibly wouldn’t have realized the importance of this if it wasn’t for our son’s condition, so we see it as a blessing in disguise. We now understand clearly how vital it is to be kind, forgiving and committed in a marriage and family. Yes, it isn’t always easy, but it is worth it.
The importance of gratitude.
Your eyes open immensely when you are raising a child with any kind of disability. Other people take so many things for granted – their health, their ability to walk, even each passing moment. To me, it is all a gift and this gift of foresight has only come to me by my exposure to this other world, where children don’t live “perfect” lives. They have wheelchairs or conditions that make them grow sick or they are robbed from the expectation of living a long and healthy life.
But rather than feeling weakened by this reality that most people never see, I am strengthened by it. It has given me new clarity. Once upon a time I, too, was like so many people in this world — unaware of the important things in life. I used to also think my time on Earth was endless. Now I know that when I reach my last day, there will be little regret because I ask myself every day: What can I do today to make it special? For everything I do have, I am grateful.
The importance of faith and hope.
When life is difficult, you need to have faith and hope that better days will come. You need to believe that something great will eventually come out of this adversity. You need to let go of your expectations and go with the flow. Maybe our path isn’t the one we expected to take but hey, that’s okay. We make the best out of the cards we have been dealt with every day.
Deep down we are all the same.
If I could go back now to that nightclub, I wouldn’t hesitate to speak to that guy in a wheelchair. In fact, I would seek him out to let him know “Hey, you are not alone.” I find it so bizarre when people judge others on race, religion, sexual orientation, social class and physical appearance because I know that it is like my son’s wheelchair – a barrier that prevents people from looking in. Or maybe it’s an obstacle that some people are not prepared to cross out of fear or ignorance.
But if people did take the time to look within or cross that line, you would find that this adult or child is just like you. They bleed when they cut. They cry when they are hurt. They laugh when things are funny. They watch TV shows, listen to music, read books, go out, have fun and belong to families that adore them. They don’t live in some weird, isolated bubble.
My advice to you: next time you see what you think is a bubble, make sure to pop it.