All Things Disability

Raising a Child With Down Syndrome: Stefani Buonopane

Episode Summary

Stefani Buonopane explains why raising a child with Down syndrome can be both beautiful and challenging.

Episode Notes

In 2017, Felicity Buonopane was born with Down syndrome. Since then, her parents have embarked on a journey focused on supporting their daughter and creating inclusive opportunities for her. In this week's episde you'll hear from Felicity's mother, Stefani.

Stefani has a master's degree from Lesley University in dance movement therapy and is a certified yoga instructor with training for both children and adults. Stefani has developed therapeutic relationships with people of many ages, backgrounds, and levels of need.

Stefani in particular has focused on helping Felicity find "her power" and in this episode you'll hear how Stefani has harness arts and yoga to help her daughter feel empowered.

About Northeast Arc

Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.

Learn more at ne-arc.org.

Like us on Facebook: https://www.facebook.com/NortheastArc

Episode Transcription

[MUSIC PLAYING] Hello and welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo-Ann Simons, the president and CEO of Northeast Arc. Today, I'm thrilled to be joined by Stefani Buonopane. Members of our Northeast Arc community are likely very familiar with Stefani and her daughter Felicity. If you're not familiar with this family, I'm really excited for you to learn today about their journey.

The greatest lessons that I have learned is just seeing your child for who they are and what they can do. There will be challenges. And it will be hard. And it's going to be so beautiful and so fulfilling. I love this idea of duality. Both things will and can exist. And it will be OK.

In 2017, Felicity was born with Down syndrome. And since then, she has received early intervention and other services from Northeast Arc. We were honored to have her model as part of our inclusive fashion show during our 2019 evening of changing lives Gala. Stefani has worked both personally and professionally to support individuals with intellectual and developmental disabilities with a focus on the healing power of the arts and movement.

Thank you so much, Jo-Ann. I am honored to be here today and to be a part of this wonderful podcast. I think it's such a great thing for the community. I'm so excited to be here with you today.

Well, in addition to Felicity having been a model for us, she's actually a permanent part of our PR. And we'll see her on many posters. And if you come to the Liberty Tree Mall in Danvers, you'll see her on a large, wonderful poster. And we're excited that we can learn more about your journey today. So Stefani, I want to start with something we both have in common, being the mothers of children with Down syndrome.

As you know, Jonathan was born with Down syndrome more than 40 years ago. It's a story I've told many times. But I want our listeners to hear your story. Tell us how you felt when you learned about Felicity's diagnosis.

Yes, well, thank you, Jo-Ann for sharing your story. And your journey with Jonathan has been such an inspiration for me. And part of the reason why I'm able to sit here today and share my story. So thank you. I will never forget the moment we first knew something unexpected was happening with our pregnancy. It was one of our first prenatal appointments. We had an ultrasound. And they find something abnormal on the ultrasound.

And it still is baffling to me that in 2016, the doctor who talked us through the ultrasound was so ominous and had a terrible delivery of information. And he said, there's fluid behind your baby's neck. And this could be an indicator of a chromosomal disorder. And I have to tell you, your baby could have little to no quality of life. And you're going to have to make some very difficult decisions.

So I think our mouths dropped open. My heart dropped into my stomach. And shock and fear were our initial emotions. It was very scary. And just the fear of, is our baby going to be OK? Is she going to be healthy? But thankfully, we quickly shifted our treatment to Mass General Hospital. And we were connected to wonderful care there.

And Paul and I knew this was our baby. And we were going to do everything to protect her and keep her safe. So we did genetic testing. And that confirmed Trisomy 21 Down syndrome. And that's when everything shifted. We still had fear. And we were still shocked. But now, we had hope. And we were connected to the Down syndrome clinic at Mass General. And Dr. Sacco, he's such a rockstar. And he immediately told us how wrong that doctor was. And that our daughter was going to have a tremendous quality of life and here's why.

And Paul and I are from Swampscott and go big blue, Jo-Ann. You're also from Swampscott. And we were connected with you. And Paul remembered being in high school with Jonathan. And he was in school with him. And he was participating. And so now, we're seeing, oh, this is not scary. We started to be connected to the Massachusetts Down syndrome Congress. And I had a first call with another parent, Leah. And she was very honest and shared her story of her daughter. And everything started to take on a new light. And we started to become very hopeful and excited about Felicity and our journey.

I wonder, as someone with a background in mental health counseling and working with children with disabilities, did you think that maybe helped you become more prepared than other parents facing a prenatal diagnosis?

I think it's hard for any parent to be prepared for having a child with a disability because it's such a unique experience. And I, in many ways, was very unprepared to have a child with Down syndrome because I hadn't lived it. I didn't know what it was really going to be like. So I do want to honor that piece. It's hard to prepare for the unknown.

But I will say, I have never been more sure of why I have the background and the training that I do. And Felicity is making that very clear that my skills and my training in dance movement therapy and in yoga have helped me to understand Felicity in some really unique ways. And to really meet her where she is to support her growth and development. And it has provided me with so many opportunities to create these rituals and routines with Felicity to help her grow and develop.

And it's been such a joy and a gift to see it all, everything I've melded together and being her mom, and seeing how Felicity has taken it and is thriving. And it's really exciting to see how we work together and discover this together.

And the beauty and positive parts of social media is I get to share with the world Felicity's accomplishments. And I love watching her. Tell us about the affirmation that you have created for her. Because I just wish that more families could benefit by that.

Yes, so this is one of the first things I actually did with Felicity was teaching her about, I call it, her power. And I show her your power is in your heart and in your belly. And when you feel your power, you can do anything. And it's something that just came naturally to her and to I. And because I believe that Felicity has that power inside of her. And if she does believe in herself, she can do anything.

And so it became just such a ritual. We do it every day. And so she does it naturally. I've taught her, in moments of fear, if you're afraid to do something, if you don't know how to do something, where is your power? And she will immediately just put her hand on her heart and her belly and take a breath and say, I can do it. And then, she does it in her own way.

And part of it is I have to do that for myself. And I have to model for Felicity. A mom does this too. I feel my power and I can do anything if I believe in myself. And so for parents and caregivers, showing that to your children that that's what teaches them. And she gets it. She really gets it.

Yes, she certainly does. I mentioned that Felicity received early intervention services from the Northeast Arc. Were there other supports? I think you mentioned the Massachusetts Down syndrome Congress and the Down syndrome program at MGH. Are there other things that you found most beneficial are the services? Or do we cover them all?

Yes, well, first, I don't know what we would have done without Northeast Arc and her early intervention team. What an invaluable resource for us and for families with children with disabilities. Ashley and Julie were the people who came in to our home. And to have so many people working for the common goal of your child's growth and development, and everyone wanting her to succeed, was such a gift for Paul and I for our family and helped Felicity tremendously.

And Northeast Arc also connected us to the Children's Center for Communication. And Felicity did a wonderful signing group there, which we would not have known about without her early intervention team. We were connected with the Federation of Children with Special Needs. And if you're a parent with a child with a disability, connect with them because they have so many resources that we did not know about. And they're so helpful.

And then, yeah, the Down Syndrome clinic at Mass General, Dr. Scott Coe. If you don't know him, he's really wonderful. And they give Felicity such great care, but also provide us with all the tools we need. And the MDSC, the Massachusetts Down syndrome Congress, Sarah Cullen is an angel there. And what they do for families. They have family socials where you can meet other families with children with Down syndrome.

And I actually just recently used them. They have a center for inclusive education. And I called up and talked to another parent about this transition from preschool to kindergarten. And it's just such a vibrant, wonderful community. And it will take you to other places too.

I can't believe that Felicity is going to kindergarten. So exciting. I know that, sometimes, we publicly, as parents, we talk about all the wonderful things and the accomplishments that our children have. And sometimes, we don't really think about the challenges as much. But I was wondering if you and Paul have faced any challenges that you might want to share?

Yeah, we have faced a lot of challenges as parents with a child with a disability. And a lot of it has just been navigating the unexpected. And Felicity has had medical challenges. We briefly talked about when she was six-months-old, she was diagnosed with infantile spasms, which are seizures for baby. And it was a pause in her development.

And it was such a scary time because we knew Felicity already had challenges with her development. And now, there was another challenge for her. And she had to go through steroid treatments. And we didn't know the outcome. We didn't know what would happen. So that was a very scary challenge for us. Thankfully, she's OK. And it was OK.

We really had to lean into our community to handle that. We had to lean into her doctors, the specialists. We had to lean into the community to help us get through that. And thank God, we had such wonderful care and community. And then, in another sense, now, I think the challenge is seeing this developmental gap with Felicity and her peers. So as she gets older and she's in school, that gap becomes a little more evident.

And just recently, we were at a playground. And Felicity is more of an observer. And she plays, but she plays more alongside-- well, her peers are very much in their play together. And they are just all over the playground. And that's more of a challenge for Felicity, physically navigating a playground.

And as a parent watching, it's so hard not to want to intervene and show her what to do. So I think a big challenge as a parent is just knowing, this is Felicity's way of being in the world. And we can help support her and give her skills. But really, this is how she's going to learn and grow. And trusting that will be OK.

Wow, you just reminded me of a time in Jonathan's life when he would be at a basketball clinic fof-- a basketball league for little children or small boys. And he would be on the side watching the basketball game. And he couldn't join in. And then, I realized that, actually, what he was doing was he was taking in all the rules and observing it. And 3 or 4 weeks later, he actually had the confidence then to join it after having seen as an observer. But he was an active learner. And so I think of Felicity as she's learning how to participate.

Exactly, it's just it.

On the flip side, I know there's been great moments of celebration. And you and Felicity and Paul are blessed with an incredible supportive family who are cheering you on at each step that you take together on this journey. And so that may be one of the greatest successes that Felicity is having the family that she has surrounding her. But what are some of the moments of celebration for you and your family?

Yeah, I think that that is one of our biggest, just having the outpouring of love and support. From the moment we found out Felicity had Down syndrome, we've only received support and love and acceptance. And that's such a wonderful thing to celebrate. One of the first things that comes to mind is when Felicity had her spasms, she stopped smiling. And I think one of our biggest wins and successes is when her smile came back when she recovered. It was such a beautiful moment to see her smile. It seems like a little thing, but it was the most powerful.

And having a child with Down syndrome, I think, has helped us celebrate. There's nothing too small to celebrate. And so when Felicity started to stand on her own and gain that confidence to stand. And then walking, I mean, that girl worked her butt off to learn how to walk. We had physical therapy at Spalding, which was wonderful. And everything her and I did together and Paul. She started with a gait trainer. And then, she moved on to holding rails and taking steps.

And then, that first moment where she finally felt confident enough to walk on her own, I mean that was such a celebration. And she works so hard. So I think anything Felicity does, we celebrate because we know how hard she's working. And that things don't always come naturally to her. And seeing how it clicks and when she gets it, it's so beautiful to watch.

You're going to have lots of those moments.

Yeah. So many every day. And I'm also just remembering when we collaborated with Northeast Arc for World Down Syndrome Day in the Swampscott public library. And we donated so many wonderful books and resources for the community to have. And we had the stories. And it was such a moment of celebration of community coming together, that it's not just Paul and I and our family. We want to share this with everyone. So that was really-- that was a big success too.

Well, now, Felicity has a baby sister. Well, not so baby anymore.

Yeah, so that's another big one is expanding our family and watching Felicity be an older sister. Because that was very scary. And I had a lot of fear of not being able to meet Felicity's needs and meet Michaela, our other baby's needs. And we're doing it. Felicity is such an incredible older sister. She is so loving. And I've seen how it helps both of them grow.

Felicity is teaching her sister right now how to sign. And she'll go, Michaela, this is more. And she'll put her hands together. Michaela, this is how you say help. And it's just been so beautiful to watch their relationship and see Felicity take on a new role as big sister.

Oh, congratulations.

Thank you. Thank you.

We mentioned, we talked a little bit about how you focused on the benefits of arts and movement. Tell us more about what it looks like and how you do this in a professional setting. And especially with Felicity and how you've shared it with other families.

Yeah, the arts and movement in yoga, it really speaks to people of all ages and all abilities. And it gives people an opportunity for growth. And has a positive impact on development. I think the beautiful thing is when you're using arts and movement in yoga, it's a non-verbal form of communication. And that's why it speaks to everyone. And it helps with support, motor abilities, and emotional regulation, and self expression.

Most of my work has been with children. And so it's very playful. And it's very creative. And that just meets a child, where they are developmentally. And so that's what allows for the growth. And I think why it's so successful. It's been incredible to do this with Felicity. And it's been in every day with Felicity.

So I'm just thinking, when she was little and we're learning how to communicate, her and I would just spend so much time in front of a mirror. And making faces in the mirror. And I would reflect what Felicity was doing back. And she would copy what I was doing. And it taught her about facial expression. So you might not have the words, but you can show, communicate with your face and with your movement.

And we would dance-- we dance in front of the mirror. And she's mirroring me. And that, I really think contributed to her ability to communicate. Because then, we started to add sound. And it's this very playful back and forth dance. And now, Felicity is singing Beach Boys songs. And she loves music. And she loves dance. And she knows how to express her emotions in a way I don't know if she would have if we hadn't used the creative arts and movement.

Another one is self regulation, emotional regulation. I think it's with any young child. But especially with Down syndrome, it can be hard to regulate emotions. And using breathwork and using the body. So most of the time-- not every time, but most of the time, Felicity knows she'll take a deep breath and she really will. And she knows to do that. And maybe it's squeezing her hands or stomping her feet when she's angry and teaching her that all her emotions and feelings are important, but how to express them in a useful way.

And I'm also thinking, those wonderful videos I was able to share with Northeast Arc during the pandemic of some of the things I have done with Felicity to help her growth. We make a lot of things into songs, especially transitions. How do we get from one place to another?

But getting dressed is one challenging thing for Felicity. And so my thought, OK, how do I make this playful and creative? And so we made up a song about, you put your head through, that's what you do. And now, she's dressing herself, basically independently. So it's looking for the everyday moments and adding some movement, some music, some breathwork to create a ritual and have success.

Have you thought about sharing these videos more broadly or doing more work in this area? Because they sound so transformational for a child. Yes, I think that's my ultimate hope one day is that I find a way to share that on a more expansive level. Because I have seen how it has helped Felicity. And I want to share that with other parents and caregivers. Because it is pretty simple. It's not complicated. And anything that is not complicated is great for parents. But I have seen how it's helped Felicity thrive in the world. And so I'm excited to see. I don't know where or what it looks like. But I'm excited to see one day what we create together.

I imagine that you're using some of the same techniques with your daughter, your new daughter. And that it really is beneficial to children. Because a lot-- we're seeing, especially during the pandemic, that a lot of children are having trouble self-regulating their emotions.

Yes. And I have been doing it with Michaela as well. And Michaela is only 16-months-old. And I'll say, Michaela, take a breath and she'll ha, ha. And now, she's doing it just on her own. And also with communication and language, there's this piece of learning the non-verbal communication that really supports verbal communication.

Michaela has so many words. And Felicity, they both do. And I think it's because that's how they started. They started communicating nonverbally, and using music and movement and sign. And I do think there's something there. And there's something transformative to share there.

Well, we look forward to seeing where that goes. We're focused on inclusion at the Northeast Arc. And I know that that's really important to you and Paul. And what are some of the ways that you're creating opportunities for Felicity for inclusion?

Yeah. Paul and I work very hard at this, at inclusion. And we do have to be diligent on understanding inclusion and looking for opportunities for inclusion. We are in this right now with school and Felicity's education. Inclusion is a right but it's not a guarantee. And we have to really understand special education. And we have to understand the laws to make sure Felicity gets her basic rights.

We just did her IEP, which is an individualized education plan for anyone that doesn't know. And we're going through it on there, it was checked off partial inclusion. And Paul and I immediately said no. It says right under, you take a child out of the classroom once everything else has been exhausted. And we felt that they were sort of preemptively saying Felicity can't do this.

And we know the best way for Felicity to learn is in the classroom. And that full inclusion is where every child should start. And full inclusion is where Felicity was going to start. And then, you adjust and you adapt once Felicity shows us what she can do or what she might need more supports with. And so we kind of pulled that clause out and said, no, we haven't exhausted every intervention. Felicity will start in the classroom.

And then, we'll see what she can do. And while they did not agree with our decision, they changed it. And so now, Felicity will start kindergarten, full inclusion in her classroom. And I know it's hard, especially for educators with limited resources. And it's just hard being a teacher right now. But I think some of the old ways we need to change.

And I can speak just to the Down Syndrome community because that's the community we are in. Research is showing that children with Down syndrome learn best in the classroom with their peers. And so that's what we will-- we will make sure that's where Felicity is. I like the word integration because for me and for Paul, that's what inclusion is. That she's not just going to be there, Felicity will be integrated in her learning environment and integrated in her social interactions.

And whatever sports or hobbies, we want her fully in it. And we want things to be adapted for the way she learns. And I know it's hard to do that for every child. But if we could take on inclusion in that lens, look at the whole child and then open things up for how they learn, I think everyone benefits.

A child without a disability learns how to connect and how to be with someone with a different ability. And it teaches them so much. And then, the child with the disability, they learn through mirroring and observation. And so really everyone wins. And I think inclusion is going to be a big thing for our family. And teaching ourselves and teaching others what that can look like and how beneficial it really is.

Well, you're exactly right. You start with a full inclusion. And you see where Felicity leads you. And hopefully, it will continue to lead her on a life of inclusion. It's remarkable to me that we still have educators that decades after we've been able to show with research that children with disabilities learn best when they have access to regular curriculum, parents are still having to fight for it.

Do you think about Felicity's future? I know that that's sometimes hard to do. And sometimes, it's nice to look about a year or two ahead. But do you happen to think about the future and what inclusion might look like and what your dreams and goals might be for her?

Yes. For Felicity, I think our biggest goal, and it's now, and it's in the future is that she is an active, engaged, appreciated participant in her community. And whatever setting she is in, that she is seen for the incredible individual that she is. And that she can share her gifts with the world. That is our goal for Felicity.

And we asked Felicity, what do you want to be when you grow up? And lately, she's been saying I want to be a teacher. And mama Dada will help me. And yeah, why can't Felicity teach in whatever capacity that might look like? I'm so grateful for Northeast Arc and the work that you are doing with Breaking Grounds cafe, and parcels, and having opportunities for people with disabilities to share what they have in their talents with the world. The possibilities are there, if we can just take a different approach.

And Felicity wants to be a teacher, we will help her. We will help her do that. She already is. She teaches me every single day. She teaches the people around her. Like I said, she's teaching her sister sign language. So she has it naturally. And we'll help Felicity do what whatever she wants to do in this world.

No doubt, she will be successful with you and Paul by her side. Do you have any advice for families who might be in a similar situation facing a diagnosis?

Yes, that it's going to be OK. I think one of the greatest lessons that I have learned is just seeing your child and allowing your own experience and journey. Seeing your child for who they are and what they can do. There will be challenges. And it will be hard. And it's going to be so beautiful and so fulfilling. I love this idea of duality. Both things will and can exist. And it will be OK.

I always recommend asking for help and getting support because it's there. And there are so many people and so many resources out there to help you on your journey. And you can feel like you are alone. And you're not alone. The help and the support is there. So reach out and lean in into the community. And find out and discover what is there for you and your family. And just to breathe, to celebrate every single little win. And to really honor your journey because it is a beautiful one.

Thank you, Stefani, for joining us. It's been a honor to have you. It's been remarkable to watch you and Paul as parents go from a prenatal diagnosis to staunch advocates. And now spreading your joy and hope with the world, which is really how we change the world. I think about the fight that you're having with inclusion. And how I'm so happy that you're fighting for that.

Because if Johnathan hadn't been fully included in Swampscott high school, taking regular classes, being there, you and Paul might not have remembered how a young person with Down syndrome could succeed and grow. And the access to the regular curriculum is where learning happens. And I know that Felicity's going to have it. And Michaela will be one of her biggest cheerleaders.

We want to thank Peabody TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the Changing Lives fund, which was created through a generous gift from Steven Rosenthal. To learn more about Northeast Arc and to find past episodes of this podcast, please visit any-arc.org.

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