Your Child Had A Special Needs Diagnosis—Now What?

Learning that your child has special needs can be overwhelming and coping with the diagnosis can daunting. Debbie Bertrand, a Rockland County mom and advocate of families of children with special needs, shares her experiences as she navigated life after her daughter was diagnosed with cerebral palsy.

When her younger daughter was diagnosed with cerebral palsy at age 3, Haverstraw resident Debbie Bertrand says she didn’t know anything about the disorder. “It was life-altering. I remember thinking ‘This cannot be happening,’” Bertrand says. “I didn’t know where to get help or where to go from there.”

A decade later—during which her daughter was further diagnosed with ADHD, auditory processing disorder, and vision perception issues—Bertrand launched Parent Resource Lifeline (parentresourcelifeline.org), a nonprofit organization dedicated to providing support and reliable resources for families that have children with special needs.

Here, the mom-turned-advocate talks about the mission of her organization and offers advice for other parents of children newly diagnosed with special needs. 

Why did you found Parent Resource Lifeline, and what’s the mission of the organization?

For years I’ve been wanting to help other parents of special needs children, because it’s so frustrating to not know what the next step is after a diagnosis. I have a few missions: First is to collect all resources for parents, and I want to weed out the bad ones. I also want to create a society for parents so we can all talk to each other—it’s a great asset when you find someone who understands what you’re going through. I also want to help money-wise—some parent advocates are free, some aren’t, and lawyers and some therapies can be expensive.

What was it like coping with your daughter’s cerebral palsy diagnosis?

In the beginning I had a lot of guilt. I thought I did something wrong when I was pregnant. Even though the doctors say ‘This is not your fault,’ there’s a part of every mom that says ‘It was my responsibility.’ After a while, you just learn that you have to listen to your head—your heart always tells you you’re guilty, because that’s what moms do. I don’t think any mom will ever get rid of that guilt, but you have to learn to say ‘It doesn’t matter whose fault it is, I just have to make my daughter the best she can be.’

What’s one thing you wish every parent knew when hearing a special needs diagnosis for their child?

Thinking about a parent just finding out—it really gets me, because it puts me in that place. Just take a deep breath and know it’s all going to be okay. This child was given to you for a reason, because you’re a great parent. You’re going to do just fine. The first year is the toughest, and there will definitely be new challenges along the way, but everything will be okay.

Make sure you find someone to talk to. When I started talking, I felt so much better. But when you tell someone and there’s silence because they don’t know what to say—because ‘Sorry’ just doesn’t sound good enough—don’t get angry. Just find someone else to talk to.

Do you feel like you’ve found acceptance, or is that more of an ongoing struggle? 

I think it’s an everyday [struggle], and you have to learn to accept that. You have to take a deep breath and keep your eyes on the prize, and that’s to make her a successful adult—that’s my job. I always say I want her to be the best she can be, no matter what that is. I don’t care if she’s working in a grocery store—my goal is to help her be the best grocery store worker she can be. And take it one day at a time. If you look at the whole picture, it’s so overwhelming and you’ll break down. And you need to occasionally do that: Just sit in a room and cry it all out. But try to take it one little piece at a time.