Photo credit: KultureCity

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I’m thrilled this week to welcome Dr. Michele Kong, the co-creator of the largest nonprofit on sensory accessibility and acceptance, KultureCity, and board member, Daniel Platzman, who is the drummer of the band, Imagine Dragons who join us to discuss this incredible organization that “makes the nevers possible” by “creating sensory accessibility and inclusion for those with invisible disabilities” including autism. In just 7 short years they have managed to inspire thousands of volunteers across the United States and internationally to make large sporting and other venues Sensory Inclusive™ Certified. It is such a pleasure to have them on the podcast!

KultureCity: Sensory Accessibility and Inclusion

by Affect Autism

An Awareness around Sensory Sensitivities

Growing up with an awareness around sensory issues, thanks to his mother (see our Insights video above), Daniel had a unique perspective before joining KultureCity. He also experiences sensory processing challenges himself, so hearing more and more about sensory issues, it drew him to the cause even more.

I added that, as a parent of an autistic child, I wondered where the autism came from until I gained more awareness around my own traits that my son shares, and that taking the awareness to the next steps of acceptance and then inclusion is really what is so important about what KultureCity does.

We chose play is a new series documenting my family’s Floortime journey. With each episode, you’ll get tips, reflections, and insights to support you in your own journey.

What sparked the creation of KultureCity?

I asked Dr. Kong about how KultureCity started. I watched the videos (below) of her husband and co-founder, Dr. Julian Maha, describing a couple of unfortunate incidents around getting asked to leave a museum and their son being harrassed at the hair salon. I wondered if these negative experiences were pivotal in their idea for KultureCity, or were they already thinking of it?

She said that as an ICU doctor, and her husband being an ER doc, they were aware of autism, but until their son was born and they had to navigate the challenges, they hadn’t realized how much the world was not well-suited to autistics because of the lack of understanding of who they are, and why they do what they do.

It’s not just the knowledge, Dr. Kong continues, but also how we can accept and include them. The museum and salon were seminal events, she shares. She was nervous enough going to get her son’s haircut as it was, given previous experiences. So she had made all the arrangements in advance: the parking lot was empty, it was mid-day, it wasn’t going to be busy, the hairdresser knew they were coming and they discussed strategies in advance. Michele was still apprehensive, but he was doing pretty well.

What is 'Affect Autism'?

Affect Autism is really about promoting the same things that KultureCity promotes: Instilling a feeling of safety, acceptance and inclusion and we do it through a model or approach called DIR/Floortime which stands for Developmental–that is, meeting a child or individual where they are at in that moment–not putting demands on them that they can’t handle, Individual differences, which absolutely includes sensory sensitivities, and Relationship-based, which is how all humans develop–through warm and nurturing relationships with those they can trust. And we use affect to instill that sense of safety and to create positive, playful interactions in sharing joyful experiences together.

Caregivers interested in implementing DIR/Floortime with their children are welcome to attend the free weekly virtual parent support meetings that I facilitate for the Interdisciplinary Council on Development and Learning, which is the home of DIR/Floortime.

But while he was getting his hair cut and vocalizing, which Michele understands, but others may not, someone came from the corner, grabbed him and asked why he was being so naughty, which struck Michele to the core. Events like these made her realize things needed to change and there needed to be a culture shift so people would understand why this mission is so important. It’s great to change one person’s understanding, she shares, but it needs to be more wide-spread.

Unless we do something, our kids and individuals with invisible disabilities will be invisible, quite literally in that sense of the word, and they will never truly be able to be included in society.

Dr. Michele Kong

What does KultureCity do?

KultureCity is all about inclusion, Dr. Kong asserts. They realize the first big step is understanding and for people to know what it means to be excluded because if you aren’t aware about sensory processing difficulties, you don’t understand. Their first mission is training and education for individuals and for public venues that provide services including museums, zoos, schools, airports, or sports and concert venues. They provide venues with sensory bags that include headphones and fidget tools. They aim to equip people to have the understanding and skills to be inclusive of everyone.

If you scroll to the bottom of this link, you will see a map that I shared in the YouTube video interview of all the sensory inclusive venues including the Rogers Centre in Toronto where the Toronto Blue Jays baseball team plays, and where many concerts are also held. I then shared the link of KultureCity’s Team where I commented that not only have they brought all of these venues on board and trained them to be Sensory Inclusive™, but they also have a number of well-known celebrities and professional athletes and the like on their team including Daniel which really helps to get the word out. I asked him why this is so important to him and the band to be a part of KultureCity.

Daniel said that being aware of sensory processing difficulties made KultureCity something he already wanted to be a part of, but on top of that, being in a touring band that goes to venues and realizing that some fans might not go to an Imagine Dragons concert because they don’t feel safe really hits home. It goes deeper than that, he says, because if one person in a family doesn’t feel safe, then the entire family won’t go. There could be so many people who want to come to a show, but can’t and we need to do something about this, he states. KultureCity makes it possible for sensory sensitive people to attend events like his band’s concerts.

My favorite thing about KultureCity is that the onus is not placed on the individual with the invisible disability. The onus is placed on us, on society, to be better and to rise to the occasion to include everyone.

Daniel Platzman, Drummer of Imagine Dragons

Sensory Rooms

I asked about the Sensory Activated Vehicles (S.A.V.E.) that make events accessible when there is no place for a sensory room, or for outdoor venues. The vehicle is the sensory room. Michele says they realized that sometimes you just need one or two minutes. You might really be enjoying a concert and the music, but something becomes overwhelming, whether it’s too loud or something else. Prior to KultureCity, she continues, if a person has a dysregulated moment and has to leave, the whole crew needs to go. The S.A.V.E. is a quieter mobile space that has bubble walls, bubble tubes, and headphones where you can go to take a break.

Daniel says that early on when joining KultureCity there was a story about a family at a hockey game in Atlanta, when they still had an NHL team. Whenever a goal was scored, a giant bird in the air would shoot fire, loud sirens would blare, and strobe lights would go off. There were three goals scored in the first four minutes of the game one night and an individual with an invisible disability had a meltdown. Luckily, the staff were trained, they were able to spot the person in crisis and help them go to a quiet spot to collect themselves, then come back in. Re-entry is a big part of the training, Daniel explains, because sometimes the staff say, “No. There’s no re-entry.

Daniel continues that the mobile sensory rooms are really great when there is no inside. They used them at his bandmate, Dan Reynold’s LoveLoud Festival, to make the festival Sensory Inclusive. They had so many people telling them that the mobile vehicle (S.A.V.E.) made all the difference in the world about being able to attend and allowing the whole family to have a good time. Just reading the testimonials tells him that they’re really on to something.

Stay tuned!

Dr. Michele Kong says that coming soon they will be introducing an even more portable and accessible mobile product than the S.A.V.E.!

Making a Difference

Daniel recalls a story from a security guard who learned in his KultureCity training about how leaning on something can be due to a vestibular issue–needing to touch something for balance and spatial awareness of where their body is in space. It was really enlightening for this guard who could think back on patrons they had not handled correctly, and this was the missing puzzle piece. In general, Daniel declares, people are just unaware about invisible disabilities. He believes that people are naturally compassionate and empathetic enough that once you’re aware of it, it’s automatic.

Dr. Kong adds that, on the family side, sometimes just knowing you’re included is all that you need. They’ve had families who go and never end up needing the services. They’d then have the venue ask why they need all these things if they aren’t used. But the key is that just knowing that it’s there for them to use should they need it, and that they’re included and accepted (by understanding that they’re not being difficult, etc.) gives families who are impacted so much peace, comfort, courage, and the strength that you need to say, “I’m going to go to the concert today and enjoy the music because I can, and people want me there” Michele explains. It’s such a huge piece, she says.

Michele shares an example of a police force who were certified who gave feedback that it wasn’t just something they had to do like a check box. It really made them realize how much this would impact the way they engage with the people around them and shape what they needed to do. The training is broken down into segments with the first being education about what it means to have a sensory sensitivity, she explains, and what it looks like. Then they get into why it’s important for them to know about it. They talk about how it’s very common. Most people know someone who has an invisible disability or have one themselves. It makes it more personal.

Next, they talk about what to do when they encounter someone with a sensory issue. What if they see someone flapping their hands or covering their ears, for instance. What does that mean and what are some of the tools they can use? They talk about the noise-cancelling headphones, the lap pads, and then about communication, which is just as important as the tools. How should you communicate with them? What cadence in your voice should you use? They provide tangible tips and tools that they can use immediately upon completing the training.  

They also use Social Stories which they can help the venue create that walk through of the steps of what will happen when you arrive at the venue and throughout the event. It can reduce anxiety for those with sensory sensitivities by giving them visual cues of where things are and what they look like. It’s been a powerful and useful tool for the venues and for the families alike, Dr. Kong tells us.

I compared their training to training done by Self-Reg in Canada and DIR/Floortime where those being certified first figure out what makes them dysregulated, and complete a sensory processing profile on themselves first, in order to be able to relate to what they’re helping others with. Everyone can relate to that tag on your shirt or a picky wooly sweather being uncomfortable, for instance. It helps them have more compassion for what others are going through with their sensory sensitivities.

Impact

KultureCity is not just helping autistic children. You can have sensory needs for a variety of reasons. They’ve helped young children through to elderly people with dementia and Post Traumatic Stress Disorder, Obsessive Compulsive Disorder (OCD), seizure disorders, Downs Syndrome, strokes, among others–anyone with an invisible disability, Michele says. It’s a big slice of our community. Imagine if this portion of our communities don’t participate, she adds. Everybody misses out. 

Our society is not whole until everyone is able to engage.

Dr. Michele Kong of KultureCity

I mentioned that some people might say, “Oh, just get over it,” but Daniel adds that the concept of a sensory crisis doesn’t make sense to you if you do not understand it. If you’re unaware of what it would feel like or can’t imagine it, you can’t relate. That flashing light is like actual pain to some, he adds. Everyone can relate to things like the tag in their shirt. It’s just a matter of education.

Michele adds that a reporter once asked her why people would want to go to a music festival if they are super sensitive to sound if it’s so loud and crowded with people. She just made the assumption that they don’t want to come and shouldn’t come due to their barriers. Michele in turn asked what about if they like the music and want to go? Daniel adds, “What if you didn’t feel safe going to the library?” The fact that some people don’t feel safe going to an aquarium, for instance, which he considers a tranquil place, made him realize this is more than just about concerts–it applies to everything. Michele seconds that: it’s anywhere that’s public including grocery stores, schools, airports, and more.

Working with Schools

I asked Dr. Kong about their work with schools. She said they typically work with individual schools directly, rather than at a district level. They’ve put a lot of sensory rooms in schools, again, so kids can have a place to decompress. They also have designed and piloted mobile sensory stations for families to use at home during online schooling that includes a bubble tube, wands of light, and calming and soothing noises.

KultureCity’s Mobile Phone App

KultureCity also has a mobile app where you can look up sensory certified locations and suggest locations that you’d like to see become sensory certified. Dr. Kong says that when you input a location, their team will get a notification and can reach out to the location about how to make them Sensory Inclusive™. The mission has translated well, she explains. People understand why this is important and have tended to reach out to them to be trained whereas at the start they were the ones reaching out. They started with the National Basketball Association (NBA) in Cleveland and it quickly spread to other sporting venues, and then to music festivals and events. Once you have that momentum, people want it and it falls on KultureCity to meet the demand, she shared.

Funding for KultureCity

They had a group of angel donors who believed in the cause and wanted to help out, so KultureCity was able to start the initiative and start the work without having to do grassroot fundraising, unlike other groups who have to spend the first few years marketing and fundraising. From there, the stories and testimonials of how many families were impacted really drove the mission forward. A big part of their fundraising has been the KultureBall as well, where Daniel’s band has performed more than once. Daniel said that it’s a great time and he rates the ball a 10/10!

In 2021, the Imagine Dragons performed at the KultureBall and Daniel says it was their first performance in a long time, so it was special. He said the KultureBall is a multi-day event with a lot happening in Birmingham, AL. He says there’s always something special about performing for an audience that isn’t necessarily there just to see you, and you have to win them over. Also, playing acoustic where you have to be the presence made it a lot of fun. The work that the Imagine Dragons do with KultureCity, LoveLoud, and the Tyler Robinson Foundation for pediatric cancer, Daniel says, makes them feel so good over just promoting themselves.

KC Fit

In April, 2016, Michele ran the Boston Marathon with her friend Tiki Barber and when they got to about mile 20, the idea for KCFit was born. They were thinking about all the families they were running for by naming people each few minutes as they were struggling to finish. When they crossed that finish line, they felt so empowered, because every step they took was for a child and a family. They decided they could use biking, swimming, or running to raise money for a cause. That November in 2016 they put together their first KCFit team at the NYC marathon, and have done that marathon every year since, along with others in Boston, Chicago, and other cities.

I shared that when recording this podcast, it was Terry Fox season here in Canada where there are runs all over the country to commemorate Terry’s run across the country with a prosthetic leg while he was fighting cancer. I have done Terry Fox runs since I was a kid and wore a necklace of the Terry Fox loonie during my half-marathons to inspire me. A full marathon is on my bucket list, so I told Michele I would like to join her in 2022. Daniel says he would like to eventually as well, and that drumming is his extreme sport. He could drum at every mile, he suggested, or I proposed breaking a Guinness world record for drumming.

In April 2021, KCFit broke a Guinness world record for number of people running 5 kilometres simultaneously and virtually! They had participants from France, Germany, Brazil, North America and everyone had to be stationary until Michele said, “Go!” and then they all ran 5 kilometres. 

This cause is obviously near and dear to my heart because of our personal journey, but at the same time, we cannot do this alone, and it’s only when every single one of us stand up for our neighbor, our friend, you know, that somebody else, that we can truly affect change and make this happen for our world and for the next generations to come, and we have to. We have to do it. 

Dr. Michele Kong, Co-founder of KultureCity

One of my favourite videos on KultureCity’s YouTube channel is this one about making the nevers possible. I hope you enjoy it. 

This week's PRACTICE TIP:

This week let’s think about how can we make our local environments more accessible for our child’s sensory sensitivities.

For example: What public place does your child enjoy going to most? Is it because it’s sensory inclusive or could you suggest it become Sensory Inclusive? Where does your child feel most comfortable in your home? Could you make your own home more sensory inclusive by carving out a sensory room or area for them?  

Thank you to Dr. Michele Kong of KultureCity and Daniel Platzman of the band Imagine Dragons for sharing their vision and experiences of this wonderful organization with us. If you enjoyed and found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Learn more about KultureCity on their YouTube channel or at their website, and please consider making a donation here to support their work.

Until next week, here’s to choosing play, and experiencing joy every day!

.

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This week we’re talking about virtual Floortime coaching for caregivers, using the Interdisciplinary Council on Development and Learning‘s 12-week virtual home program as an example. We will discuss the program where caregivers meet weekly with a Floortime coach in applying the Developmental, Individual differences, Relationship-based (DIR) Model at home. At the end of the podcast, a parent joins us to discuss her experience with the program. Stephanie Peters and Gretchen Kamke are both Occupational Therapists, and Colette Ryan is an infant mental health specialist and a doctoral student in Fielding University’s Infant and Early Childhood Development program. All three are DIR Expert Training Leaders and all four of us are parent coaches in ICDL’s DIR Home Program. Let’s dive in!

Virtual Floortime Coaching for Parents

by Affect Autism

What is Virtual Floortime Coaching?

The DIR Home Program began with the pandemic when parents didn’t have access to services. They needed to become play partners, Colette explains. So this program was developed to provide parents with that support. “How can I do Floortime at home? Tell me about Floortime. What is it I’m supposed to do?” They made modules which included PowerPoint presentations and lectures about aspects of Floortime and created resources for families including links to Affect Autism podcasts related to the topics described and outside readings. As much as possible, they also linked in Dr. Stanley Greenspan’s work so families can hear his voice. 

These resources are to provide families with support for areas of concern or difficulties or areas they want more information on, Colette continues. There are modules on the early social-emotional developmental capacities, cue reading, accommodation versus remediation, pacing, the language of Floortime, relationship with food, and sensory information. There’s about 40 different modules to support parents. I shared how in the virtual parent support meetings I facilitate for ICDL weekly, parents frequently tell me that they read Engaging Autism, follow the website, and understand Floortime and all the principles, but still don’t know what to do with their child.

How Virtual Floortime Coaching Works

When I first found DIR/Floortime, I only came in knowing it was a respectful, developmental approach which was in line with what I wanted and when I started taking the DIR Courses and learned what the Functional Emotional Developmental Capacities (FEDCs) were it all made more sense, but still it took a few years to really understand what I was doing. DIR/Floortime is a parent-mediated approach. I asked Stephanie how she helps parents who understand that Floortime looks for our child to be intrinsically motivated, is not about teaching skills, and how we are trying to get those circles of communication, but they are still really stuck.

Stephanie says that is a common theme. Many parents found DIR/Floortime because it feels good, she says. Something about it resonates with how they parent and how they do or want to relate with their child. There’s the initial feeling that this is where they belong, but it’s still a little abstract. It’s about validating how they are already relating with their child naturally and adding the DIR lens to it. It’s about saying from an outside perspective that this is what you did, giving it a name, and looking at all the beautiful things that happened as a result of it. It’s about adding a level of mindfulness and intentionality to it, she explains. It’s organizing for the parents and helps them to feel that what they are doing is purposeful.

Gretchen continues with parents who are maybe new to Floortime with young children who seem like they are in their own world or seem to ignore them all the time, or with older children who have had other types of therapies that the family wasn’t interested in continuing. She says sometimes they’re stuck with those emotional experiences that can feel really difficult. The DIR lens can really support and empower parents, she says, to help their children really make sense of the world and the emotional experiences that don’t feel comfortable to the child or the parent.

Virtual Floortime Coaching is Individualized

What Gretchen loves about virtual Floortime coaching is how much it’s individualized to each family. Some families who come in with more knowledge about the DIR Model may just need a tweak here or there, while others come in unsure and feel quite desperate about wanting to help their child and the services they have don’t really support their values as a family. Gretchen continues that they get to help parents understand their child’s experience, starting with the quest for safety and really bringing in those individual differences. If they can help a parent really understand the ‘I’, those Individual differences and how they affect the ‘D’, the Functional Emotional Developmental Capacities (FEDCs), and help them realize that their ‘R’, the Relationship, is their strongest tool, then you give the parent the gift of connecting with their child.

That’s what it comes down to for me, is empowering parents to connect and attune with their children, which is helpful for the whole family.

Gretchen Kamke, DIR O.T.

Getting Parents Started

Sometimes it starts out with helping the parent understand that concept of ‘Relationship’. We are so used to telling our children what to do and instructing and teaching them that we forget about just sitting back, observing, and seeing what ideas they have, without questioning them about them. It sounds so simple, but it can really be a big hurdle for parents. If you don’t understand the Individual differences and dismiss them, your child can feel unsafe. Learning this comes with cue reading to mention one thing. I asked Colette to walk us through a sample program and how she’d start with a family. The first thing she thinks of is the parent who forgot how to play. They’ve forgotten what play is all about and why it’s so important.

Colette might support this parent in something that they like to do. If the parent enjoys tennis, they could connect around that and have fun. The parent needs to read the cues and attune to what the child needed in the moment, then just be able to have fun. They need to forget about reading, writing, and learning colours and shapes. That will come once the child moves along developmentally through play. The executive functioning skills required for those skills are learned in play. The play has to come first, and then the academics will follow.

All of a sudden, things start happening. It’s not magic. It looks like magic, but it’s just allowing for development to happen, and it’s so fun just to be a part of.

DIR O.T. Stephanie Peters, channelling Dr. Gil Tippy

A Shared Experience

Stephanie adds that this is what she loves: how we take this beautiful idea that is DIR and individualize it to who they are as a family, what their interests are, and help to foster and cultivate this deeper understanding of who we all are in the family and what are some of these Individual differences that are limiting engagement or play, or that makes some situation more difficult. As an Occupational Therapist, Stephanie would work with children to help them climb that developmental ladder, but in virtual Floortime coaching, all the power is given to the parents, she explains.

Stephanie loves watching parents own all of the successes and gains. Once they help relate the Individual differences back to the model and tweak the interaction, all of a sudden you see progress in the interactions. Gretchen adds that for so many parents, their interactions with professionals have been about teaching children skills. Gretchen loves that in virtual Floortime coaching they get to give parents permission to share joy with their kids, and not just for fun, but for growth and development.

When you decrease the stressors and just focus on connection and what you can both do together that you both love to do in a genuine way, you see behaviour shift that you have wanted to see shift, or you see skills develop that weren’t focused on in the program. You see all of these skills develop because of how we promote development in a way that’s meaningful and respectful. They give parents permission to just share joy and be connected with their children which is great for both nervous systems, she says.

Colette adds that they get to share pride with the parents. Parents share videos of them playing with their children, and they get to share in that with them and be excited at even the smallest moments. Many of the parents have been to numerous doctors and appointments, and they’re always being told what’s wrong with their child. Colette says they get to talk about what’s going right, and they get to use that to then work on the areas that might be more vulnerable. They get to do that week after week for 12 weeks (and more because some parents sign up for more sessions), and they get to share in that joy, Colette beams.

Facing the Doubts

I expressed, as a parent, that you feel that stress so much when you feel this constant pressure to have to do…to get your child to where they need to be. It is so difficult to just let go and enjoy your child. How do I know they will learn the things they will need to know. Gretchen described so nicely how just taking off those stressors, accepting your child for who they are, and being there in the moment, allows everyone to relax and just be themselves and that development starts to happen naturally.

I shared that I’ve watched my son over eight years of Floortime go through the Functional Emotional Developmental Capacities exactly as they’re described, but in his way. Neurotypical children might go through these stages in a particular way, but our children progress through them in unique ways and on unique timelines, that look different based on their Individual differences. I remember waiting and wondering if my son would ever reach the fourth capacity and if he would ever start imaginary play. You cannot teach that. It happens naturally on our child’s timeline.

I get very emotional every time my son reaches another developmental milestone and every time I talk about it. This is what the virtual Floortime coaching brings to families. Your coach gets to see what you’re doing right and point it out to you. You hear what you’re doing right and are encouraged because so many parents are so hard on themselves thinking they’re not doing enough, or thinking they should have found Floortime earlier, etc. You can’t force things to happen. You just have to watch it unfold.

It’s getting used to the fact that it’s a process rather than something you can force to happen. That’s the biggest challenge for a lot of families.

Daria Brown

Providing the Opportunities

Gretchen asserts that indeed we cannot teach or make development happen. We can try, she offers, and maybe our children can imitate something, but do they have the skills to imitate the next thing in a new situation? What we can do is create environments and interactions that facilitate development and meaningful, rich development that is generalizable. And once we can help a child develop in the way they’re supposed to develop for them, Gretchen continues, we don’t have to work so hard later on because now they have the skills to be able to learn things that are being taught.

We can’t force development, but we can create an environment that entices a child to interact with it because that’s how kids develop. Kids develop through interacting with their environment and interacting with the people within that environment, so how do we make that environment welcoming and enticing, and how do we facilitate it versus force it?

Gretchen Kamke, DIR OT

It really is about providing the opportunities for shared joy and connection as Colette described so nicely when giving the example of finding an activity both parent and child can enjoy together. It really is a dance. As our children develop, what worked last month might not work anymore. I asked Colette how she handles that when parents feel like they’re on the ‘Floortime train’ chugging along and then all of sudden something changes. Maybe they were eating well and stop eating, or were toilet trained and now start wetting the bed. How does she coach parents who get discouraged when the progress halts?

Colette says she tells parents that this is supposed to happen and will pass. T. Berry Brazelton Touch Points covers this–how things are cooking and then we have points of standstill. As Floortimers, Dr. Greenspan told us that when we have a lag, we up the Floortime. Colette might suggest adding another play partner into the mix, such as a neighbour. Ten-year-old girls tend to be the best Floortimers because they’re willing to play and be silly. You can find high schoolers or college students. A wonderful resource, she says, is your local acting troop. Right now many are out of work due to Covid. They’re such great players because they use their whole body and tons of affect

That Weekly Reflection

I brought up that some families are big! They have more than one child and feel overwhelmed with basic survival, let alone finding time for Floortime. I shared that Kristy Gose discussed Floortime with family and small groups in a past podcast and Rosemary White discussed DIR camps where they facilitate Floortime in groups for other references. Stephanie shares that in virtual Floortime coaching, they do Floortime with the parents so they can do it with the children. They provide the support and touchstone for them to come every week to share a gain or express concern over an area they’re struggling with. It’s empowering having that outside eye to share in your experience.

The safe space to flesh out what’s happening and make sense of it is so supportive. You can understand what impact the Individual differences are having and try to create other opportunities for engagement and see if we see a shift. Even if you’re swamped and overwhelmed, you can talk about what’s working and what isn’t. There’s always something you’re doing that’s working, Stephanie continues, and that’s where the Floortime magic happens. You are always relating and engaging with each other, even if you’re not explicitly carving out time for Floortime play sessions. And it allows you to keep track of successes and progress.

Parents are 50% of the Relationship and they need to be supported, too.

Stephanie Peters, DIR O.T.

Floortime All the Time and Everywhere

The theme of the ICDL 2020 DIR/Floortime Conference was Floortime All the Time and Everywhere and even if you are busy, there are still Floortime ways of interacting around meal times, getting dressed, bath time, or driving in the car! And usually siblings understand their siblings well and can get in there and participate. Gretchen adds that when we talk about the developmental capacities, we aren’t only talking about the child’s but ours as well. Sometimes the parent’s regulation needs support so they help parents get curious about how they can support their own regulation to support engagement with their family.  

Colette adds that siblings playing together can be wonderful, but if one has high arousal and one has a low arousal level, it might not work out. As a facilitator, we can find an activity that brings down the high arousal child and lifts up the low arousal level child. We need to provide the experiences so they enjoy being with their siblings, and facilitate that. Stephanie says that it’s hard for parents to do alone sometimes. When the Individual differences of everyone involved becomes confusing it can be a challenge. 

Promoting Growth in Ourselves

Gretchen shares that learning about her own developmental capacities has given her permission to grow and has given her more compassion to empathize with families as well. So she says that helping parents analyze their own developmental capacities can help them see how it affects their interactions with their child. If Gretchen herself feels flustered, she can step back and realize she’s back at the first capacity and figure out what she needs to do to shift. What can she do within a Relationship to be able to regulate so she can relate again where she can be a more logical thinker?

Colette adds understanding our own Individual differences as well. Perhaps playing with rice just doesn’t feel good to you. There are other things you can do, but if you feel like you have to play in the rice, now you lose the affective connection you’re looking for. Parent and child might both be talking about the rice, but are they both feeling the same way about the rice? You don’t merely want joint attention where you’re both looking at the rice. You want to both be playing and enjoying it together having that affective interaction. It’s a shared and joyful experience. 

Meeting Parents where They’re At

Stephanie says that there are also parents who understand the concept of affect or circles of communication, but say that they aren’t an affectively charged person so it just doesn’t feel comfortable to them to turn up the affect. In this case, Stephanie says she individualizes the model to them so they can go into an experience that might not be the norm for them and know what their strengths are so they can have a vision and know what the path is. It’s how you use Floortime to result in these experiences that when it works, looks so easy and is fun, she adds, but it’s so much more than that and parents can own that and feel empowered.

Colette adds to Stephanie’s point about pointing out to parents what works. She gave an example of the parent sharing that something happened and the child protested with a “No!” and Colette was so happy. The parent asked her to explain why that was so good. Colette thought that was a fabulous question. Sometimes parents might be focused on compliance without realizing that a child’s ability to assert their own view and say, “No! is a developmental milestone that we need to celebrate.

A Parent’s Experience with Virtual Floortime Coaching

We were lucky enough to have Ashley join us, a parent who has been in the DIR Home Program for nine weeks now. She had done a lot of research to find something that could be a bridge between her 4-year-old son’s wonderful home life, where he was comfortable and happy and felt safe to his preschool that he hated after nine months. An early interventionist had recommended Floortime in the past and when Ashley pulled out all her old paperwork, that stuck out. She said it was a hard decision to commit to the home program because it’s scary and she didn’t know what would happen. 

After her first session with Stephanie, she said she knew it was the right decision. When she started her son was happy at home but rarely spoke. If he did engage and interact there were only 2 or 3 circles of communication and then he was done, Ashley says. She was in a position where she would anticipate his needs and provide for him, which was enabling, or reinforcing behaviours that kept him stuck. I knew what Ashley meant. I do everything for my son, too, and it reminded me of the recent podcast with Mike Fields about creating opportunities in Floortime where we discussed that not giving our children the chance to respond or tell us what they want takes away their opportunities to do that themselves.

By stepping back and letting him tell me what he wants, I’m giving him practice in a safe environment with someone he trusts so that when he’s in another environment, he will have those skills to communicate his needs. In other environments, people won’t do everything for him and anticipate his needs the way I can. It’s about fostering independence, Ashley states. 

Making the Shift

I asked Stephanie about Ashley’s starting point and she remembers the frustration around playing with a toy about the alphabet over and over and brainstorming over how to create opportunities for interaction around that. Stephanie says it was the deeper level of understanding and connection that has facilitated spontaneous interactions that he’s now doing and generalizing with other family members and all the communication that’s erupted in such a short period of time that has happened naturally because the attunement is on another level. Attunement was always a strength which they used to get to that next step.

I checked with Ashley that, like in my own experience being coached in the past, being validated for what we’re doing is more powerful than we realize. We can be so unsure when we implement something, so to hear that validation from someone who sees so many clients really allows us to build from there. Ashley agrees and believes it has unlocked her son’s growth. She says that it was like her son felt misunderstood for his entire existence, and it was frustrating for him and hard. There were things that just seemed out of his control. 

A Shared Sense of Accomplishment with Our Children

She gave the example of how her son has loved the alphabet since he was 1. They have a toy that has a writing tool where Ashley would write a letter and he would erase it like an etch-a-sketch, but he had never explored the writing tool himself. Ashley was so bored with the toy and that emotion of her being bored was getting in the way of sitting with him for a length of time. She took the time to let him try to tool and when he traced his first letter, he was so proud and beamed from ear to ear. He had such a glow of confidence that gave her chills. He might have experienced a little bit of that on his own with his own experimentation, but they had never shared that experience together.

Now Ashley is able to create more of these opportunities for him to feel safe to explore with her so they can share these experiences together. I shared a similar experience with my own son where we discovered new songs for his playlist that we listen to in the car and how he kept wanting to hear the verses over and over. I complied as best as I could while driving and he then surprised me by singing along with the entire song two days later. It was the first time I’d heard him be able to sing in time with an entire song. His face was beaming with delight and I stuck my fist into the back seat for a fist bump to share that moment of joy and pride with him.

Connecting with Our Children

As parents, Ashley says, we long to connect with our children which is why this is so fulfilling. For her, it makes the challenges that come with autism more understandable and more worth it. It’s so cool to see a parent feel more connected with their child, Gretchen says. That’s what this program is, connecting parents with their kids, and there’s a lot of power in that. Stephanie shares that finding that different way of engaging in that first session and seeing that intrinsic sense of curiosity in the world each week because her son now knows he’ll be heard and understood is opening up his world because of how Ashley cultivated the world of safety for him.

I checked with Ashley my assumption that learning about developmental capacities and sensory processing has her observing things differently. She said that she used to look at development as a ladder but now sees it as a pyramid where we have to fill in the foundation to strengthen the higher capacities. Strengthening the lower capacities and understanding them is one of the most valuable things we can learn for our autistic children, she believes, because understanding those capacities and seeing where her son is in any moment allows her to help others understand and helps her see what might be causing a disconnect or an issue which has been like a radar system for her. She can now tune in and see what’s happening right in the moment. If he’s down to the first capacity, she’ll just hang out there at the first or second capacity and knows that he’ll get it when he’s ready.

Find a Floortime practitioner

Floortime practitioners are in many places, but with virtual Floortime coaching, you can now access anyone over the internet. Check out ICDL’s DIRectory to find providers near you and also see the Services link on this website to find many people and clinics offering Floortime services. Finally, check out ICDL’s DIR Home Program, an example of one of these services.

This week's PRACTICE TIP:

This week think about implementing a weekly check-in, whether it be with a Floortime professional or just for yourself or with a family member or trusted friend to reflect on the week and what’s worked and what’s been challenging.

For example: Consider attending ICDL’s weekly virtual parent support meeting or another parent support group where you can surround yourself with those who are there to listen and support you.

A huge thank you to Colette Ryan, Stephanie Peters, and Gretchen Kamke for giving us such a rich description of how virtual coaching for Floortime looks and feels! If you enjoyed and found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Also stay tuned for next week’s podcast where we’ll speak with the creators of Positive Development, a new hub for providing parents with developmental approaches including DIR/Floortime, which insurance is covering in a few states, with more to follow!

Until next week, here’s to affecting autism through playful interactions!