November 29, 2022

November 3, 2022

Our PD Story: Peter and Leslie

When Peter was diagnosed with autism at age three, his developmental pediatrician recommended ABA (Applied Behavioral Analysis) therapy — for 40 hours a week. This idea didn’t sit well with his parents, Leslie and Peter. They were motivated to find other ways to help their son advance his development and engagement. ‍

“Positive Development has meant everything to our family.”

When Peter was diagnosed with autism at age three, his developmental pediatrician recommended ABA (Applied Behavioral Analysis) therapy — for 40 hours a week. This idea didn’t sit well with his parents, Leslie and Peter. They were motivated to find other ways to help their son advance his development and engagement. 

We spoke with Peter’s parents to learn how they discovered the Developmental Relationship-Based Intervention(DRBI) model and how working with Positive Development has impacted their son’s development and happiness. Interview edited for clarity and brevity.

Why didn’t you want to pursue the initial therapy recommendation you received for Peter? 

Leslie: When we got his diagnosis, our developmental pediatrician said to put him in 40 hours a week of ABA therapy.  Forty hours is a workweek for an adult. We wanted him to have time to play, have time to be a kid, have time to rest. And we wanted something that wasn’t focused on compliance. 

We were reading a lot from the autistic adult community. They said behavioral therapies weren’t helpful to them as children and even caused damage to their mental health because of the message that was sent: they needed to change their behavior, to be more neurotypical, to fit into society.

We absolutely did not want to send that message to our son. We wanted him to know he’s beautiful the way he is — every little single thing about him. And we wanted a therapy that was evidence-based. I wanted to know it was going to work and that it had [scientific] studies behind it.

How did you start with Developmental Therapy?

Leslie: We were looking to help Peter with his engagement with us, focusing on connection. We wanted to build intrinsic motivation for him to learn. Once my husband and I had really looked into the developmental approach, we started a course that night. And it really brought us joy. We knew that this was going to be something that we could implement at home. It really focused on [our relationship with our son] as the catalyst for change.

How did you discover Positive Development?

Peter (father): We were paying out of pocket [for the virtual course and] it was just too expensive to continue with it. It’s complicated with what’s approved and what’s not. It’s ridiculous that it’s so challenging – it should just be available.

Leslie: New Jersey has been really progressive by passing a Medicaid benefit for DRBI services, but the problem was finding a provider that accepted Medicaid. I was calling around to different places and another provider – she was really just like an angel at this point – referred us to Positive Development, which takes Medicaid. Just a three-minute call was everything.

What attracted you to the Positive Development approach? 

Leslie: We love that they look at him as a whole person. They don’t just look at things as a behavior that he's just doing. What are the feelings underneath? What are the sensations? Is there something going on that we can help with? They understand that [people with autism] don’t need to change because they have a different neurotype. There just needs to be support and accommodations wherever they need them to continue their progress in their development. 

Why is having a multidisciplinary therapy team so important?

Leslie: Being part of the multidisciplinary team that Positive Development has built is wonderful because we felt like everyone is on the same page. They communicate with each other. Many parents of children with autism and other disabilities know that’s priceless because you really need that case management skill. It’s hard when people are at different agencies and there’s no communication between them. With Positive Development, you get a DRBI coach that comes and does the developmental therapy sessions with your child, and you get speech and OT if you need it. (Note: PD also offers mental health therapy.)

What is a typical session with PD like?

Peter: When Peter has sessions with [his developmental therapists] Ms. Sue and Ms. Emily, he has a blast. He’s always excited when they’re coming. They let him lead the play and then they get him to engage in back and forth play, turn taking. They come up with ideas for what to play with next and they'll challenge him to try to get a little more out of him. “Up the levels,” they call it. 

The sessions are always different. Sometimes they'll bring a toy or we'll set out new toys so we can shake things up, to provide different words for them to use and different concepts to work on. 

Leslie: It’s really what Peter wants to do. He's very much a fan of trains, letters, and “Sesame Street.” Because it’s at our house, [the coaches] are really expanding on that play, bringing in other elements. There's definitely a lot of movement in the sessions, too. Peter's very active. He keeps them on their toes. I feel like it has even helped him with his language, just the movement and the play.

How do you participate in the sessions?

Leslie: We participated in the sessions a lot early on with our team because we wanted to make Peter feel comfortable. We stayed and kind of backed out a little so that he could interact without us there. He loves his therapists so much and he's so comfortable with them that we really just let them do the therapy sessions now. 

Peter: There's always going to be other people that Peter meets and he's going to have to deal with when we're not around, like when he's at school. So we want him to be able to work on those skills. He knows we're nearby, so if he wants to bring us in on something specific, we sometimes join. But generally, we want him to be able to work on his skills, playing with others.

How has your PD team specifically helped you as parents? 

Peter: Part of our program is that we do weekly sessions over the computer, virtual coaching. So they will watch us play with Peter during one of our Floortime sessions and [offer] things we can do to expand the play. Once the session is over, we wrap up with them for 15 or 20 minutes to go over how the play went, what they thought were the highlights, things we can work on, maybe ideas for when we play on our own time to help Peter be able to interact more and get more language and gain more concepts from the play. So they've been invaluable in just helping us get better at our own developmental approach / practice. 

Did you ever find your role in the therapy overwhelming?

Leslie: You’re supposed to dedicate two hours daily. That seemed a little bit daunting to us in the beginning, but it's really not. I feel like there's no better way to connect than play — just being completely present and learning things about him and how he thinks. They've taught us how to really implement it in everyday moments, too, like during bath and dinner time. You don’t have a clock in your head: “Is this two hours?” We just incorporate it into our interactions and he's really progressing.

What results have you seen from therapy with Positive Development? 

Leslie: We haven't even been with Positive Development for a year, and we've really seen him just blossom with so many different skills, his pretend play skills, his symbolic play skills. They're not just emerging – they're here and they're wonderful. Also, he is so talkative now. The language is just pouring out of him. 

His socialization skills really went up too. He absolutely loves initiating interactions now. He is the mayor of the playground whenever we go. His teacher has reported a lot more pretend play at school and reciprocal communication with the other kids.

Peter: The amount of progress he has made has just been way beyond our expectations. He has improved so much in doing the developmental therapy circles of communication, back and forth play, his language. He's getting so many more ideas and he's able to stay engaged in the play so much longer.

What is a specific example of the progress he’s made?

Peter: He always liked memory matching games. But before we started the program, he understood the rules, but he wouldn't do turn-taking. He would just want to play on his own. We would sit with him and be excited for him when he would get the match. After being in the program for a few months, they had started playing some card games with him. Later, when it was just me and him, he was so excited because he had been working on his turn-taking. I got to play with him and when it was my turn, he was happy when I would get a match. It’s such a specific memory, but it made me so happy because he’d only been in the program a little bit and he turned such a corner. All of a sudden, games were on the menu.

How does it make you feel to think about Peter’s therapy experience?

Leslie: We absolutely feel joy and relief and really empowered from the sessions from Positive Development. As parents, we just want a good relationship with our son and for him to be happy and to know that he’s loved and truly accepted for who he is. I think that the [DRBI] approach and Positive Development has done that for our family.

Peter: I feel like they gave our child back to us. We don’t have to worry that he’ll be in intensive hours of learning with providers without us. He gets to be home and he gets to be playing with us. It makes us really happy to know that this is his life. These are going to be his memories of his childhood.

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