Tag: Down Syndrome

We’ve all heard that saying, “It takes a village to raise a child,” but when you’re parenting a child with a disability, you’re often left wondering, “but where’s my village?”

You look around and ask yourself who else understands what it’s like to change your child’s diaper in a public restroom without an accessible change table, cramped in a stall and fumbling. You wonder who else can relate to constantly scanning the playground to account for your child while simultaneously watching for the potential escape routes your runner might take, never really being able to sit down and relax or read a book while your child plays.

We are incredibly fortunate to have the local community we have. We have found other parents who can share their struggles, successes, fears and dreams with us. These other parents understand what we mean when we say, “this is hard.” Online, where most of us communicate with each other, we ask the questions it feels like no one else can answer.

Questions like :
What supports have you found for your children this summer?
Do you know where we can enrol our child in programs that will also offer an adaptive and inclusive environment?
My child is starting school; what do I need to do to prepare the school, our family and our child for this huge transition?
How do you handle trips to the dentist? Is our only option sedation for treatment?

While online support and community are vital in making caregivers feel less alone, we lack that neighbourhood community vibe. The one where the kids from 3 doors down come knocking and invite Robert to play, and we know he will be safe with them.

We have worked hard to create a network to help us in raising our children. We have a loving and supportive family who understand how to keep Robert safe.

Sometimes as caregivers, we grieve the life our children might not have. The life we’ve imagined for them is where we don’t need to plan for meltdowns. A life where we don’t need to fight for inclusion and acceptance because the world has understood that accommodations serve more than a minority.

Instead, we see a bumpy road ahead, one with many hurdles.

We look for allies, people who help us carry the weight of our worries. We look for others who are clearing hurdles and reducing our stress.

We welcome people who look around and say, “This could be better. I can make it better.” They act, without the need for families to advocate (again and again).

On the heels of the previous post, I urge you to consider how you can be part of the village we hope to have to help us raise our children. We’d love to have you.