Graduating from Asking for Advice to Giving It—Now That's a Good Thing

A mom raising a child with special needs with her family in New York City is empowered in her own situation as she helps other families through trying and challenging times with their own children with special needs.

Like so many people I know, I was dragged kicking and screaming into special needs parenthood. I was not actually planning to experience this much uncertainty, pain, rage, and even shame; on some level, I was embarrassed to be singled out, to be in the position of having to ask for help for my child.

I remember the day the initial Early Intervention reports arrived in the mail. After reading them, I sat motionless on the couch for hours, feeling as if I’d been hit by an asteroid. I wanted to move 3,000 miles away to someplace where no one knew me, where I wouldn’t be “that mom” with “that kid.” I wanted to disappear.

This is not an experience the average person seeks out. And it’s transformative, whether or not you actually wanted to be transformed. Like it or not, you are on your way to becoming an entirely new person.

Discovering the Stages of Parenting a Child with Special Needs

Seasoned SN parents will tell you that you don’t turn into this new person overnight. It took a lot of years, and tears, to adjust to my new identity. Along the way, 

I learned things I never expected, or even wanted, to know about things like social skills, motor planning, sensory integration, pragmatic language, and special education. It was something like being born all over again, and something like moving through the five famous Kübler-Ross stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance.

An SN parent who has gone through these stages may still find herself looping through two or three or all of them again, sometimes multiple times. You can be going along fine, and then something will hit you out of nowhere: a birthday, the first day of school, a carefully planned vacation that didn’t go at all as you hoped, the moment when an infant sibling easily picks up a skill the older child still struggles to learn. Any of those can set you back and mess with your head, and cause you to detour through some or all of DABDA all over again.

But there is a point at which you realize you have come further than you realized. It’s a sixth stage of the process, one that doesn’t get talked about as much. You may not be conscious of your progress towards it, but once you reach it, you have gained a stronger foothold in your new reality, and things begin to hurt much less. I would call this stage H, for Helping: when you use your experience to offer support to fellow parents.