There is one really positive thing about being on this autism journey, and that is getting to know some amazing people: other autism parents. There is no shortage of moms on this journey that truly amaze me and inspire me. When I met Lea Keating in person last year, she told me the story of how she started her own business, Sensory Street Kids. I quickly knew I wanted to interview her for TMR! She took a very difficult and painful experience and used it for good, to create a program to specifically help kids like ours. I love that! I am always amazed when good things can be created out of bad things. I hope her story will inspire you all as well.
Hi, Lea. Thanks for letting me interview you for TMR today! When I first met you last year, I was really inspired by your story and how you started Sensory Street Kids. Let’s start at the beginning. You had an incident involving your son at a storytime that didn’t go well. Can you share with us what happened?
Hi, BK. Thanks so much. I’m a huge TMR fan!
Cole was my firstborn, and I was so excited to join my friends at mommy and me classes. But, while the other moms chatted while their toddlers sat and played, I alternated between chasing Cole away from light switches and carrying him outside after another floor-banging meltdown. Class after class ended with both of us in tears. By the time he was three, we knew that he was on the spectrum and a huge sensory seeker. As much as it hurt (and, to be honest, often embarrassed me) to see how different he was from the other kids, I was desperate to immerse him in social situations. What better way to build pragmatic language and social skills than in a library music and movement class, right? Wrong.
We arrived early. I let him get situated and I gave the teacher a heads-up about his autism and sensory processing disorder. The class started, and he was a mess — hyper overdrive led to a meltdown, followed by holding his ears and rocking. The class was too much: too much noise, too much chaotic activity, too few transitions. It was a disaster, but I held my head up and comforted him with some swinging and deep pressure. I planned on asking his Floortime therapist to come to the next class and give me some tips. Wrong again. The class ended, and the instructor made a beeline for us. She not-so-kindly told me that this was “obviously not an autism class.” The funny thing is he wasn’t the only kid that was having a hard time!
I think the majority of autism moms have been in similar situations. I know for me, those situations really shake me up quite a bit. How did you react? Did you confront her?
You know, I had spent a long time being meek and apologizing to strangers, teachers, and even friends and family for Cole’s “behavior,” but something changed that day. I thought about how that class was run and realized it wasn’t his fault at all. The sensory piece of autism became crystal clear. He was hyper and running laps around the room because he was trying to regulate himself into a new and very large open space. He was burrowing his head into the bookcase because it was so loud there with background music, kids playing instruments and parents chatting away. And of course he melted down when the teacher took away the drumstick he finally started playing with and forced him to sit in a “circle.”
So, for the first time, instead of crying, apologizing, or feeling ashamed, I started advocating.
Awesome. What did you do?
After I told her that her class was loud, chaotic and not appropriate for children in general? Haha! Honestly, I started reading. Anything I could get my hands on about Sensory Processing Disorder and how it related to autism, language and social communication. We were also so fortunate to have the most amazing speech therapist. When I told her about the class and Cole’s reactions she saw a challenge to find a way to collaborate with his Occupational Therapist (OT), address his sensory needs and get him comfortable enough to participate in a group.
Is that how Sensory Street Kids began?
Not just yet. The last thing I was interested in doing was starting a new business. We went from class to class — all the popular kid gym franchises, various mommy and me classes, even a special-needs music therapy class. Some were better than others. The more movement involved, the better he did, but those generally had no language or social-building opportunities. The music therapist had some great comprehension goals, but he was too overstimulated to participate. We started bringing Kristy, our Floortime/speech therapist, to classes that would allow her, and Cole was doing better. We would leave and Kristy would say, “Cole was totally responding to that marching activity! If only they would incorporate some language goals there,” or “Cole only melted down when they pulled out the drums. If only there were some transitions between activities.” And then one day we looked at each other and said, “We can do this and do it well.”
So, you had a really good inkling about what would work for Cole. Did you have any idea if what worked for Cole would work for other kids?
I don’t know if you can relate, but after Cole was diagnosed and I started reading and researching I became hyper aware of other kids’ “issues.” There was one instance in a music therapy class where another child was having a HUGE meltdown and the therapist running the class had a very behavioral approach and kept instructing his mom to ignore his “behavior,” and to keep modeling the activity. I had just started to delve into the biomedical stuff, but it was so clear that his cortisol levels were rising by the second, and he needed to be comforted. The more distressed he got, the more he melted down. But because this was a “special-needs” class the poor mom felt like she needed to defer to the “expert” running the show. When the mom herself started crying too, I was furious with the instructor. Listen, I’m all for Early Intervention’s parent training programs, and I learned a TON from all of the therapists that came in to work with Cole, but what about a mother’s intuition?
Okay, I’m getting on a soapbox here. My point is, I started longing for a class that was engaging and intentional, and that was led by an instructor who really understood the sensory processing aspect of learning. If Cole needed to walk laps endlessly, but was still somewhat engaged with using the instruments, that would be okay. And, if this other boy needed to be held and marched around by his momma, that was okay, too. At least there was a level of participation to use as a starting point. Every class I went to, whether it was typical or therapeutic, was filled with kids who were a bundle of nerves and anxiety. It manifested in different forms — shyness, hyperactivity, aggression, indifference — but I started to believe that a sensory-appropriate music and movement class could be a better fit for all of these kids. Maybe if we could regulate the senses first, there would be an opportunity for all of these kids to participate.
Absolutely. And you know, I truly believe that there is no one better to design such programs/learning situations than moms who truly understand what their kids are feeling in different circumstances. I think therapists can be great, but we moms “get” our kids on such a deeper level. And, we tend to “get” other kids with special needs too, in a way that other people don’t. I can’t think of anyone better qualified to design such a program.
Let’s talk about what you did. You started your own program. Tell us about Sensory Street Kids.
Well they say necessity is the mother of invention, and I needed to find a way to pay for more therapy! I had just read Louder Than Words (by Jenny McCarthy), and she had written about all the interventions her son was receiving. Music therapy and movement therapy stood out to me. There is no worse feeling than knowing that more therapies are available, but you can’t afford them. So that was the push: if I started a program, I could hire therapists and split the cost with other families. And that’s what I did. Cole’s Speech and Language Pathologist (SLP), Kristy Miller, and I spent about three months consulting with an OT, special educator, and a music therapist to come up with language, social, and sensory goals and then hired a movement therapist to teach our first classes. Cole was the first student and guinea pig, and then word started to spread through therapists and agencies and more kids started to come.
It was awesome. Some kids were coming with their SEITs, and a little community was forming. Our first classes were less structured and we learned a lot about facilitating play and modeling language. Many families started bringing typical siblings, and they were great models. After that first year we grew from renting just two hours per week to being invited to run classes in libraries and early intervention classes.
Eventually I was able to hire a team of therapists to develop the curriculum we use today. We have an amazingly gifted music therapist, Rachel Rambach of Listen and Learn Music. Our OT and SLP collaborate to list “must have” activities and techniques. Rachel then writes custom songs that incorporate those goals. The model is simple: our instructors are engaging, our songs and activities are intentional, and parents are encouraged to actively facilitate their child’s play.
That sounds amazing! I love that you used an experience with Cole that was unpleasant and turned it into something that benefited so many others. So many times, when we are hurt or discouraged from doing something with our kids, it can cause us to feel defeated. I know certain experiences I have had have made me want to “give up”; however, our kids need us to persevere and keep going. I just love this so much. What has the feedback from parents been like?
Parents’ feedback is what has given me the motivation to keep growing. I love hearing about the small milestones. We teach parents what success looks like (and it’s not having the perfect child who follows every instruction and sits quietly for circle time). When a mom tells me her son relaxed and tolerated a group activity, we rejoice. When a child who wouldn’t engage makes a request, we cheer. But I’m most proud of the feedback we get most often: “Thank you for creating a welcoming environment. Thank you for ‘getting’ our family.” I get it because I’ve been there. I get it because it’s my life, too. I don’t ever want to hear about another mom giving up because of discouragement! We’ve got enough stacked against us, a mommy and me class should NOT be a breaking point.
Have you, or do you have any plans to, extend Sensory Street Kids into other cities, or teach other people how to start a program like this in their area?
My dream! I’ve connected with so many families through Twitter and blogs, and there is an overwhelming need for quality programming that will accommodate the sensory and social needs of our kids. I’m thrilled to say that we are finally expanding our vision.
We are putting the finishing touches on Sensory Sing, a curriculum and training program for parents and professionals who want to bring our program into their area. We are already successfully running programs in libraries, speech and OT clinics, preschools, yoga studios and even a wonderful family’s living room. My dream is that every parent who has ever left a music and movement program in tears will have access to a Sensory Sing class where they will find hope and understanding.
I hope they will as well. It’s definitely something that I think would be amazing for so many kids. Thank you for taking time out to tell your story, Lea! Congratulations on your success, and thank you for what you are doing to help our kids!
For more blogs by B.K., please click here.