A few years ago, Debbie Pearlman and her husband, Joel, began talking about a sad inevitable: If something were to happen to them, who would take care of their daughter, 23-year-old Dani, who has autism and is nonverbal. And how would that person possibly ever know all of the little nuances that make Dani, Dani?
It’s a scary thought for her and other parents raising children with special needs, she admits. But it’s a conversation that has to be had should a parent no longer be able to care for their child with special needs.
So they decided to tackle the question: Joel took on the financial side of things while Debbie took on the more personal things; Dani’s likes, dislikes and everyday needs.
“We found it to be very tedious, very tricky, very complicated and very inefficient,” the
Huntington Woods mom says.
In fact, before they even finished, much of that work wasn’t even relevant any longer. It’s a common problem for families who turn to paper and three-ring binders to make sure their child is well cared for if they can’t.
“So Joel thought, well, there has to be a better way,” she says. He set out to find a website or app to keep and consolidate all of the information, but what existed, she says, only covered a fraction of what they needed and wanted to provide a guardian.
So the Dani Plan was born.
Featuring a secure password and two-factor authentication, families can organize all the important information and everything else someone taking over care would need to know to help the child or young adult thrive and maintain routines.
“Nobody will ever do it exactly like I would,” she says, but they will have the information they need to try. “Now that I have my Dani Plan in place, I feel like I can exhale. I feel so good. And so I want to help give that to other people.” She tells her friends and people who use the Dani Plan that they, too, will get to a point where they can exhale. She says she is available to help other moms get started.
“I love helping a mom who’s maybe overwhelmed and stressed and all those things that we feel get to a place where she feels comfortable.”
We sat down with this mom of three — Dani, Alex, 20, and Charlie, 15 — to learn more about her life and parenting. She and Joel, college sweethearts, have been married 27 years.
How did the autism diagnosis come about?
While visiting Joel’s family in Florida, they noticed some differences between Dani and Joel’s niece who was a few months younger. When they returned to Michigan, they got Dani tested. “But I didn’t think it was autism, not for one second.”
When you got that diagnosis, what went through your mind?
“A lot. Even when we started the testing, somebody suggested we start running testing for autism. And I thought, God, there’s no way she has autism. But, OK, I’ll go through the motions of this. … And so when they gave us the diagnosis, she was about 20 months old, and first of all, I didn’t believe it. I thought somebody messed up and they were wrong and this could not be the case and we needed a second opinion. I was mad at the lady that gave us the diagnosis, and it was really difficult, it was really hard.”
She says she and Joel cried a lot. They didn’t believe it.
“So we’re going to go through the stuff and do the ABA therapy so we could go back to everybody and say, look, you were wrong. You had it wrong. See, she’s totally fine. I did a lot of that and I think Joel was a little more realistic about it. But, yeah, I did not let the diagnosis in for a long time.”
How did you come to an acceptance?
When Alex was born, she says she realized that different kids have different needs. “So I think having another kid kind of helped me understand, this is what Dani and Dani’s path looks like, and this is Alex and here’s what her path looks like. And they’re just different.”
What are some of the lessons that you’ve learned raising a child with autism that could help another mom?
“I think the biggest one that I’ve learned with Dani is to really stop talking and really listen with my heart. She speaks volumes emotionally. So if I stop talking at her and just sit with her and rest with her and hold her hand and drive with her, I feel …it’s a very soulful connection.
“But again, it took a while, because for so long, I resisted that. I was like, you are going to be OK and she is OK, just not by my definition. So I would say just listening with your body and your heart instead of talking.”
She also says it’s important to have a support group because she and Joel thought they were OK. She became part of Friendship Circle. While she has friends who support her and want to understand but don’t live life as a special needs parent, she says it’s vital to have friends and support of people who live it.
“Open yourself to receiving love and support and conversation with other people, because it’s so important to know you’re not alone,” she says.
Be an advocate, show up and be their voice, she says. And don’t forget to celebrate the small steps.
What’s your favorite word or saying?
“This is a good one because it relates to Dani: Always remember being unable to speak is not the same as having nothing to say.”
How do you keep your family strong?
“We have always been very open communicators with our kids about everything and all things that are happening and going on. We don’t keep secrets,” she says.
She also has different expectations for all three kids. “I think having expectations for each child that are different and meets them where they’re at is important. … I want them to understand that I’m still going to help them reach their fullest potential the same way I’m going to help Dani reach her fullest potential.”
Where do you like to go as a family to eat?
“We love a good Coney. We like to go to Leo’s Coney Island.” They also like The Corner Grill in Ferndale, which is filled with fun games and bar food.
Do you have a favorite place to play?
“We all love a good nature walk,” adding they head to Cranbrook, a park in Birmingham they’ve dubbed “Pearlman Park” and the Carpenter Lake Nature Preserve.
What is your secret obsession?
“This is silly, but I love a good juice bar. Also I would say dogs, which isn’t such a secret.”
What’s one thing you want people not raising a child with autism to understand?
“I don’t want anyone to ever have pity. I don’t like the word pity, because I think that’s sort of where I lived in the beginning, I almost had pity for myself. And what I realized is that was such a silly emotion. I feel grateful. It was a path, for sure, but I feel grateful to be able to parent Dani. She’s taught us more than I ever could have imagined. She really has taught us about unconditional love and she’s inspired us. She inspires my other kids. She inspires people around her. And so while it looks challenging, which it is, it’s also really been a gift.”
Find out more about the Dani Plan at daniplan.com. It offers a free 21-day trial and subscriptions start at the price of a just one coffee, $9.95 per month.
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