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.
What do you do to keep from feeling overwhelmed?
I have 30 minutes to myself in the morning. I get up before the children, I take a deep breath, and I find that little peace. I always say I would not be a good mom if I didn’t take that time for myself. You have to stay in touch with who you are as a person in order to be a good mom, whether you have a child with special needs or not. I would rather have 30 more minutes of sleep, but you have to make it a priority.
How do you deal with the frustration you feel when your daughter doesn’t meet milestones like other children?
You assume that they can do what other kids can, then all of a sudden you realize they can’t. But that’s okay. It’s okay that they’re not the same. You don’t want your child to be the same as every other child. They’re special, and they’re going to touch lives that other kids can’t. I have encountered children with special needs with hearts of gold. My daughter sees things that I just don’t see. She brings me back down to Earth. I love seeing life through her eyes.
You have an older daughter who doesn’t have special needs. Is it a struggle to parent your daughters equally?
I’m constantly concerned about that. I remember last year I said ‘Okay, every two weeks I’m going to go into my daughter’s bedroom and remind her that I love her, tell her how proud I am, and just love on her for a couple minutes.’ I did that for a couple months, then one day I walked in there and she said ‘Mom, I don’t have any issues, I’m good.’ Now I do it about once a month. I don’t go in her room and purposefully say it, but I’ll be sitting at the kitchen table and I’ll say ‘I’m so glad you’re my daughter’ or something like that—little words of encouragement. I think it compensates for that time you can’t spend with them.
I’m also concerned about effects that one sibling has on another. ADHD is a huge issue as my younger daughter is hitting puberty, and she puts her frustration on the older one. And I have to constantly pull that back and make sure I’m as much of an advocate for my older daughter as I am for my younger.
Any advice for other parents on juggling the responsibilities that come with having a child with special needs?
My biggest asset is structure. I structure time for certain things. When it’s time to help my daughter with homework, that’s all I do. I don’t try to multitask—I focus on one thing at a time. It helps the kids too, because you’re calm. If they see you organized, they’ll follow in your footsteps. If you make lists and stay focused, you’ll be more peaceful and relaxed and they’ll feel that.
And you can’t be afraid to ask for help. Moms always want to do 50 things at once, but find those people who connect with your child and use them. There was one night I was studying with my daughter and we were not meshing—that happens. I called up my friend, he came over, and he took her out to study. Trust the people in your life. If they connect, they’re going to give your child something you don’t have or you’re too close to see. And they’re going to be rewarded too—the connection they have with your child is something they’ll never experience anywhere else.