ONCE UPON A GENE - EPISODE 008 - Heartism of the Bitterroot
My guest today is a pillar in her community, starting an inclusive community center called Heartism Community Center, offering kids of any ability free cooking classes, art classes, yoga classes and more.
Jessica Fitzpatrick is the Founder and Director of Heartism Community Center and Bitterroot Arts for Autism, a Seattle non-profit serving special needs children and families. Her background is Therapeutics in Recreation and Psychology with a Bachelor of Science and a passion for understanding the world in a new way as an autism advocate/activist. Jessica’s daughter, Sequoia, launched Jessica’s journey into the depths of autism and sensory processing.
I'm so grateful to have met Jessica. She is a very special person with a gentle, captivating energy that vibrates warmly around you. She's one of the first autism moms that I've chatted with for the podcast, but it's interesting that these moms have a lot in common. They're calming and soothing to be around and talk to and they inspire me. I feel so lucky to have parents like this on my team.
EPISODE HIGHLIGHTS
Tell me a little bit about your daughter Sequoia.
Sequoia is a vibrant fifteen year old typical teenager in many ways. She loves tacos, french fries, has crushes on boys and a terrible addiction to YouTube videos. She also has tremendous challenges with Sensory Processing Disorder and Classical Autism. She struggles with everyday things like getting dressed, personal hygiene and even attending school. She's in a school now that she's having a lot of success with and she's able to attend for a length of four hours on Monday, Wednesday and Friday, which is an improvement from before. She gets overloaded in public places, especially where there's pressure to perform.
Tell me about the beginning, when you noticed Sequoia was different or not hitting milestones.
We had a traumatic birth and even after her birth, I kept asking the doctor if she was okay. She sat up, rolled over and did a lot of things on time. One of the things that stuck out was sensory issues, but I didn't have a word or category to understand that yet. I had several sensory processing issues growing up that I still struggle with today, so I naturally accommodated to the things that stood out the most. When I would walk downstairs with her, she had this sensation that she had been thrown and her whole body would tense up and she would scream. I learned from that to hold her tight and tiptoe down the stairs carefully and that solved that sensory problem. If she were in a room where there was food, she would immediately vomit, especially if she smelled meat. She had very hyper-sensitive reactions to the smell of food. I learned to keep her away from food, I couldn't wear her while I cooked or prepared food and there were certain accommodations I made and didn't think much of it. When she was almost a year old, I would smile and clap and she would look at me confused. For the most part, she was hitting milestones, but I took her to the doctor at eighteen months because I was concerned that she couldn't walk. By the time she was two years old, she still couldn't walk and that's when we got the first diagnosis of global delay because she also wasn't talking much. We started physical therapy right away and the physical therapist was the first one to present Sensory Processing Disorder. I had no idea. I started researching, reading books, understanding that piece and helping her integrate her sensory systems. By age three, we had been working with a case worker and she suggested an evaluation. They were unable to do a cognition evaluation and we had an autism diagnosis. I wasn't prepared for that. It was a buzzword twelve years ago. I was at a stage where I wasn't going to label my child and then, stamp, we got an autism diagnosis. I wasn't prepared, but I'm grateful now because it put us on the right track.
Did they do the full 40 hours of ABA therapy 15 years ago?
No, there was nothing like that. We signed her up for special needs preschool with five kids with special needs and five kids that were typical, so they had the peer model. That was two hours two times per week for the first year. Then she got speech, physical therapy and OT two times per week. That was less than ten hours of therapy weekly which was minimal. The next year she was able to attend four days a week to receive more stimulation and therapy. It still wasn't nearly the resources she needed to help her rise to meet the challenges.
Were you just trusting your mama's intuition on how to parent on a daily basis and learning about the diagnosis?
Yes. When she was five, we did the Play Project, which is a program that teaches parents how to work with the child in a way that the child leads and the parents follow. She responded really well to that and I was very grateful to the Play Project and the people that did that because they came into our home, videotaped us playing with our child, then would give us a CD with commentary. We had already been in therapy for three years and the therapists were trying their best to get her engaged and she had no interest. It's hard to trust someone, but it worked. As soon as I made the switch and made Sequoia the leader, she was empowered. She knew I was going to do whatever she did and it helped to strengthen our relationship and increase her trust in me so that later when I was showing her things, she would imitate me. That was the whole point, really deepening that connection.
In the beginning, what did it mean for you for your child to have a diagnosis?
It was difficult because there was already an undercurrent of struggle. She didn't sleep through the night for the first three years. She would wake up and would scream every two hours. After three years of that, I felt half crazy already, waiting and hoping for things to get better and then we got the diagnosis which was so heavy. I didn't waste much time being upset, it was feet to the ground running. I was reading books on autism and reading that they were curing it. We did every supplement, every diet, every imaginable thing we could afford and implement. We worked with a Defeat Autism Now (DAN) doctor and we tried so many different supplements. Behavior-wise and cognition-wise, nothing really changed. No matter what we did, there was never a magic bullet or golden key over a decade. Now, we manage her sleeping and digestive disorders with diet and supplements.
I've been reading about Autism and a movement towards not correcting, but wrapping our arms around the behavior.
You're speaking to stemming, which is a person's reaction to their environment when they get overloaded. You may see hand flapping, clapping or rocking back and forth and that is their body expressing the emotion they're feeling and it's a way to get the excessive energy out of their body. My daughter rocks back and forth when she's happy, so it's the emotion coming out when she's excited. To touch on a different behavior that comes with Autism, Sequoia has been showing some extreme self-injury behaviors when she's frustrated. It's a common trait with Autism. Just pause for a moment and allow yourself to feel, thinking what is the general vibe or what a child is trying to convey. I watch people's faces light up when Sequoia runs up to them because she brings joy. She runs right up to people she doesn't know, that she's never met before and she doesn't care. These social norms have no control over her. Wherever we are, she'll jump right into people's bubble and the look on people's faces is priceless. I watch with a big smile and usually, I get a huge smile in return. Occasionally, there's somebody who doesn't want her in their space and I'm right there stepping in as Mama. If I can tell they don't want her interaction, I grab her hand and pull her away gently. There's always someone else and you'll find a smile somewhere.
Tell us about your community center that you started and what Sequoia has inspired.
Five years ago I started a non-profit, Bitterroot Arts for Autism, under a larger non-profit, Bitterroot Research Conservation and Development. They took on our project because they look at children as a resource. I started Bitterroot Arts for Autism because I wanted to do art, projects with the kids, cooking and summer camps, all these different ideas I had, but I needed a funding source. That was a big success and a lot of fun and after two years of that we realized we needed a space of our own. We raised the funding and opened Heartism, healing arts for autism and all abilities. We have been operating for three years and it has been a journey with bits of success around every corner. We started offering free art classes with someone who leads painting activities. We offer a series of different life skills and cooking classes, music and movement classes, and summer camps every summer with sensory art, gardening and cooking. It's been a lot of fun, new discovery and a learning process for me of finding the balance of what the community’s needs are and what people will show up for. We want really high quality, useful and fun programming to bring people together. The neurotypical population is also invited to come in. We encourage middle school and high school kids to volunteer to work with our kids and it's a win-win. Our long term vision for the center is to have a bakery where kids can transition into adulthood, work to do something they love and the community can enjoy the bakery. Community is so important and it's something that's missing for a lot of families. I hope this idea of creating sacred space for all of us will spread far and wide.
Tell us about your TED Talk, Autism and Community Inclusion.
I was really scared when the suggestion came up that I do it and my first response was no, pick someone else. I got pressure from friends, I sat on it for a few days and I had to get psyched up for it. I have my own sensory issues and I had a fear of being up on stage with bright lights in my face, but somehow I pulled it together and got through it. Sequoia didn't come here to sit quietly. She's making big waves and I am honored to follow in her wake. I never saw myself in this circumstance, but I wouldn't be anywhere else.
What would you tell another parent that's struggling?
It comes down to the love that I had for Sequoia. There was nothing that I wouldn't do for her. I saw her as an innocent byproduct of this diagnosis. A lot of parents feel that, but also a sense of hopelessness and being overwhelmed, not knowing what to do. There are so many things we draw our strength from, whether God, spirituality, family, friends, community or whatever it is that fills your cup. That has to be a focus in a time like that to take care of you so you can take care of your child. Find those resources for yourself and be willing to make yourself a priority.
CONNECT WITH JESSICA
Heartism Community Center, Bitterroot Arts for Autism Facebook Page
Heartism Community Center
Address: 1120 Main Street, Corvallis, Montana 59828
Phone: (406) 210-2937
Email: bitterrootartsforautism@gmail.com
LINKS AND RESOURCES MENTIONED
Jessica Fitzpatrick: Autism and Community Inclusion TED Talk
The PLAY Project Autism Intervention Program
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