A few weeks ago my mother told me a story about raising my autistic brother in the 1980s. At this time, my brother had no diagnosis yet everyone knew he was “different” from other kids.
There was the time when he rode his tricycle over a highway overpass, only to be picked up by the police, who somehow understood when he said his last name (still a bit of a mystery as his speech wasn’t clear). My mother was frantically searching the neighbourhood when my sister and I opened the door to the police carrying a tricycle in one arm and my brother in the other.
But the story that resonated the most with me was the sheer isolation and lack of support. Years later, at a church bible study my mom made a comment about how difficult it had been raising my brother. The women in the room, who had all known my brother since birth, were shocked that my mother had struggled. The common comment — “we never knew you were struggling so we didn’t think to ask if you needed help.”
As a mother of a child with special needs, this story was heartbreaking and all too familiar. Here was my mother, going to church with an autistic child, who would throw things during the service, run screaming down the aisle, and basically keep my mom on her feet at all times. Yet no one, and I mean no one, thought to ask her if she needed help. Even just someone to talk to about what she was going through.
Here’s the thing. Most of us parents and caregivers raising children with special needs have tough days. Very tough days. There are the temper tantrums, meltdowns, begging and bribing to get them through a therapy session or treatment, and the sheer exhaustion of being “on” constantly.
Many nights I collapse in my bed due to sheer exhaustion, not having had 10 minutes to myself during the day. And this is after trying to console a screaming child who, for whatever reason, refuses to go to sleep, even though he’s run the equivalent of a marathon during the day.
Yes, there are rewarding moments. But let’s not sugarcoat it — raising a child with special needs is a challenging job. Yet is a reality very few people talk about.
Why? Pride? Shame (of not being super mom/dad)? Exhaustion?
Regardless of the reasons, we need to bring this side of parenting into the light. Let people see the realities of what our day to day lives are truly like.
When my mom shared the story of her church friends being shocked at how she was struggling (and still is as my brother continues to live at home), it was a wake up call. Have people’s understanding of the demands of raising a child with special needs changed much since the 1980s? I don’t think so.
So how do we change this? By writing articles such as this one. By not saying “I’m fine” when someone close to you asks how you’re doing. By letting people see behind the curtain. By being honest and, here’s a scary thought, vulnerable.
And most importantly, by reaching out and asking for help when we truly need it.
If you’re raising a child with special needs, how can you let people see the more challenging aspects of your life. If you don’t have a child with special needs, how can you reach out and help a parent or caregiver who is on this journey?
What are your thoughts? I'd love to hear any challenges you are facing.