Being a part of the special needs community

Anchel Krishna writes about the camaraderie that comes from parenting a child with special needs.

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Anchel with her daughter, Syona. Photo: Anchel Krishna.

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. 

When I was pregnant with Syona, I was part of the pregnant women’s club. As a member of this club, you exchange knowing glances with other pregnant women who can relate to the fact that you are about 100 pounds heavier than normal and at least 10 times your usual size.

When I went into labour and had Syona, I wasn’t allowed to hold her — and I became a part of another mom’s club; the moms that didn’t get to hold their babies right away. (Ask any of the members of this group how it feels and I’ll bet that 75 percent of them will get tears in their eyes just thinking back to that moment.)

When I left Syona at the hospital on my day of discharge, I joined another rank: Mom’s who leave the hospital without their baby. When I spent my days in the nursery with her I joined the club of NICU moms and, when I left the hospital with my baby, I was filled with gratitude that I finally got to bring her home.

Read more: In the NICU: My daughter’s first weeks of life >

After Syona’s discharge from the hospital, doctors found a “shadow” during a brain ultrasound that indicated damage, and I knew that I was on the waiting list to join another club. One that no parent expects to join. And as Syona started missing milestones my husband and I knew that we had graduated to full membership status. We were officially parents of a child with special needs.

The mandatory requirements of this membership include an extraordinary perspective, more love than your heart can hold, a sense of humour and the ability to manage schedules like Kim Kardashian’s publicist.

Being a parent of a child with special needs brings unique moments of joy — like getting excited over a simple sound or of being able to discipline your child. It also brings moments of anxiety as you worry about how your kids will interact with other children or whether or not they will miss out on activities they can’t do.

I’ve also become really good at the “ugly car cry.” You know the moment when you’ve held back the tears long enough and you hear a cheesy song on the radio and the floodgates open? Your ugly car cry can come in many places (variations include the shower, the treadmill, the closet, the laundry room — the list is endless).

But here’s the thing people don’t tell you about parenting a child with special needs: The other members of this club are incredible, generous, loving people. It doesn’t mean that you will like each and every person, but it does mean that you will all have a common understanding of empathy, understanding and kindness. Diagnoses are labels, and we all have a lot more in common than differences.

You will meet other parents who are generous and provide you with equipment that costs thousands of dollars for free, simply because your child needs it and their child outgrew it. You will meet children that warm your heart with a simple smile (words aren’t needed). And you will meet parents that greet you with the same haunted perspective and love in their hearts; people who immediately feel like you’ve known them for a hundred years.

This is a club I never wanted to be a part of — but the fact that it exists makes our lives so much better. Our membership in this club has also brought our biggest joy in the smiles of a little girl who regularly proves herself to be absolutely extraordinary.

Did your child bring you new friendships? Do you get a lot of support from other parents?

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