The 3rd of December is Disability Day, or the International Day of People with Disability. The United Nations introduced this concept in 1992 to encourage a better understanding of people affected by a disability, as well as raise awareness about the benefits of integrating disabled persons into every aspect of life. Disability Day is not concerned exclusively with either mental or physical disabilities, but rather encompasses all known disabilities, from Autism to Down Syndrome to Cerebral Palsy.
Upon reflection of this internationally observed day, I wanted to raise awareness of a different side of disabilities…the joys and challenges of parenting a child with disability. I am fortunate enough to journey alongside many such parents through my work as a pediatric Occupational Therapist and these parents inspire and astound me daily.
In thinking about this day I asked a few of these parents, who I work with each week in my OT rooms, what it meant to parent a child with disability. Most felt that their little one didn’t have a disability, rather a unique or different ability! Despite this some admitted that it took them a while to accept this. So far the journey for them has been amazing, a huge learning curve, very stressful and also quite lonely at times. They acknowledged that it is very difficult for other people to understand their situation. They have learnt to question everything, to try new things, to do things differently and to not accept no for an answer. Along this journey they have had to let go of all their preconceived ideas and learn to trust their gut and let their child guide them.
Parents of children with unique abilities seem less concerned about whether they could count to 100 or if they could get a good school report and were more concerned with how their child was accepted and loved by society, and that she was treated with kindness. One parent confessed to never reading a single school report or therapy report because she didn’t want to see her child as being disabled and didn’t want to read about what her child couldn’t do and rather wanted to focus on what she could do! She admitted to never feeling sorry for her child because she sees what a strong personality her child has.
Here are 5 truths about parents of children with (dis)abilities:
- They are not perfect but good enough. Just like parents of typically developing children, they make mistakes, they don’t get it right all the time but they have an amazing ability to keep trying day in and day out and to never give up!
- They carry guilt. Just like other parents, parents of children with disabilities bear inner voices of guilt. Even though their heads might know better, they can’t help their heart from feeling some sense of guilt! They rely on us, as their community to support them along this journey.
- They are patient! They have been taught by their children to have the patience of a saint! We can definitely learn from them!
- They have their priorities right. They have been forced to not sweat the small stuff and care more about life’s important truths.
- They are brave! They take each day and obstacle at a time and stay positive in the face of trials and sometimes overwhelming adversity.
“She teaches me every day to be brave, hopeful, to persevere and have patience.” – A mom of a child with a unique ability!