Understanding A Mother’s Perspective of Autism: An Interview with Sarah Kernion of Saturday’s Story

By Meghan Forte | March 2, 2024

She’s a proud mother and turned parent advocacy into a community of Saturday’s Story: meet Sarah Kernion, an autism-parent influencer. She also stated  with the written word, that she herself also uses it as an outlet, “I find writing to be more of an art and a release. I love reading but I think writing is a wonderful outlet for us all.” So she we delved into her story of what created her journey into the parent- advocacy movement:

 

Meghan Forte: Can you share some of your interests and background? How did the advocacy for children with disabilities develop?

Sarah Kernion : My undergraduate degrees are in advertising and public relations, as well as communications/relationship science. I graduated from Penn State University. Before I was even a mother or entered working in corporate America, I always had a really strong draw to communication and relationships. How group dynamics and one-on-one relationships and the emotional study behind all of that is really fascinating to me. I ended up taking a job as a pharmaceutical sales rep after college in Brooklyn, and I loved the science nature of it. Being out and about and being in sales and meeting new people. So I think I had this sort of natural draw to the human experience, and understanding how humans relate to each other. When my daughter was born and I was pregnant with my son, during those first few years of early intervention, trying to understand her as best as I could, which in my heart as a mother, was always, ‘How can I be the best leader for my child, to become the best version of who they are?’ That didn’t change because of my daughter, that was always my desire as a parent. I was not having a child to have a mini clone of me. I desired to have children to experience what it was like to be a mother and to raise an individual to be the best version of themselves. So, I think my advocacy, through my daughter’s diagnosis, allowed me to expand upon that desire of mine. And to allow for my desire to show that all children should be raised and upheld and taught to become the best versions of who they are, and it should be discussed and included through any child development. Whether that permeates through a typical child development, or for children that have Autism, or sensory processing disorder, that those are just parts of who they are. But it gives us information to help them thrive. I blogged a lot when Instagram first came out, back in the Mommy Blogger days, and I found not just a sense of community from it, but I also found that the way I mother, especially with my children with special needs, was very much not the norm. I found a lot of parents tend to isolate themselves, or have a real fear of what the world’s reaction to their children just being who they are would be. And I never had that. My heart was always led to, yes, it may be harder, as a typical mother to parent and lead my children, but that’s not going to stop me from participating in a world that they should fully be able to experience. I always use the example of coming from a family where travel was really important. Not necessarily glamorous travel, but you get on an airplane and you fly to another country to experience the culture and you don’t have to do it on a massive tab. I remember being a kid, my dad was a high school teacher, my mom was a fledgling artist, and we really experienced the world. We got to stay at hostels as a family growing up, and we experienced things. My heart for my children experiencing the world, despite what the world thinks of their diagnoses was really important to me. So, my advocacy for that was planted in my own roots as a person. Of course, we’re still going to get out there to experience life. We’re going to make accommodations. We’re going to have to be, even more so, able to adapt and make quick choices, to reframe certain situations. First and foremost, it’s not going to look like a typical family and that’s okay. I was very innately drawn to the advocacy of experiencing life for everyone to experience. And if diagnoses changes the way the world reacts, that’s not our problem. We are deserving to be here too. So, I take the kids on flights, I take them to loud places, we make our accommodations. It became sort of my biggest share on social media that we just got out and about and we did everything. And I never was going to say that it was as easy as it was doing things with my typical oldest. It just isn’t. It just isn’t, and that’s okay. That’s absolutely okay. Because that energy puts forth into them experiencing this world is the best kind of energy to be using. It’s the best energy to use. Their ability to utilize their Augmentative and Alternative communication devices (AAC) to communicate, whether it’s on a small scale or not, it’s still a win. It’s such a win. My advocacy buzz word turned into a term that I trademarked called “Inch Stones.” We’re told so much as young parents, from the first days of having a baby that your child has to hit these milestones. If we don’t hit those milestones, then we have a big problem. And I remember thinking, with my typical oldest, I didn’t do anything different with her than I did with my two children who are on the spectrum. And her hitting those milestones actually had nothing to do with me. So, as parents take these milestones thinking that we’re being good parents, that is a horrible standard that we’re setting for parents with special needs children. The only marker for success and for milestones should be based on the child themself. So, I was always talking about “Inch Stones”.  The “Inch Stones”  in a child’s development are just as important as any milestone that’s to be  reached. Because that milestone isn’t based on what my child should ever be held to. Playing with Play Doh and stacking blocks… if my son, at 6, is learning how to stack a Duplo set that a typical child does at maybe 18 months, I really don’t care that that milestone was hit at a different part of his life. I don’t care, because it’s so cool to see him come alive in building a little Duplo block tree. That’s so cool, I’m just excited for him to do it! Because he did it! And it wasn’t because he had to hit a milestone. It’s just because he learned a skill. It takes away the pressure of advocating for a goal that is just floating out there. It allows you to focus on the present, on the smallest little wins, that build up to an experience to have.

I talk a lot about my oldest who plays basketball, and my other two have a lot of sensory processing behaviors that come out, and it was difficult. And it was a real mission for me, especially for my son. My daughter is a lot more able to process loud noises and sounds. But the sounds on the court for my son were really tough. You know, a lot of behavior, body throwing, head flinging and screaming, and I just broke that down into smaller little windows of opportunity where I was like, okay. He’s not going to be able to sit by himself next to me on the bleachers, how about if I sit with him on the floor of the court by the exit, and we sit for 5 minutes and we watch his sister play. And then we go out in the hallway, we run around, he gets to kind of desensitize from that experience. Then we go back in for 5 more minutes, and he hears the squeaking sounds of the court and the whistles and the buzzers and guess what, Meg? A few years in and he’s fine. He sits at his sister’s basketball games. He watches a show or listens to a song. But it’s never that I thought he couldn’t do something. The way to get there just looks different. And I think the beautiful part of it is that typical or neurodivergent, or anyone having any disability, it reminds you… I mean, even more so for someone that is “typical,” if you break it down and see what can be done on the small set, it allows you to achieve something greater. It really does. And what that greater is doesn’t even matter. It literally does not matter what your goal is. If you break anything down into smaller steps, it’s attainable. Specifically for me with my son going to these games, that was really important. My oldest daughter is the sibling that is dragged around to therapy sessions, and in the car for her brother and sister, and it’s really important to me that her siblings are there to support her basketball. Just like she supports them in their speech therapy and occupational therapy and water therapy and swimming lessons… it’s important for… the flip is important too. And so, we just break that down. And it works. And I think that the inclusion then, of my neurodivergent children being at a basketball game or an event like that, is powerful then for the communities. Because the community saw me as a mother breaking down the parts to allow my son to be able to thrive in a sensory-heavy environment. I didn’t just say, “He’s never coming.” I didn’t just say, “Well, this is a burden, I’m not going to have him watch his sister play.” Or, “this is too much for me.” Or “this is taking away from my ability to watch his sister.” No, it wasn’t any of that. Then I believe the community was able to see that there are limitations that we put on children with disabilities only because of someone who hasn’t broken it down step-by-step, and how we can create that inclusion. 

Meghan Forte  What are your hopes for disability-inclusion in schools?

Sarah Kernion : I believe that the generalization of the typical population should be inquisitive about the mind of children with disabilities, should turn the page on realizing that it’s not a containment of the children with disabilities, it’s actually a superpower that children with disabilities have to see the world through a totally different lens. And the absorption of their experience is something we should all attune to, and we should almost be so inquisitive that we can’t help but ask, “Tell me more about that?” That we want to learn from the lens of their experience, to become better aware of society as a whole, and their school as a whole, and that it doesn’t take away. My kids’ experience as being who they are doesn’t take away from a typical child’s experience, it only adds to it. Being in art class with my son, with his typical peers, they tend to look over because he gets very loud and very excited, and he stims a lot, and the kids tend to look over, and I say, “Oh my gosh, he is so happy to be here right now to be with y’all.” It’s reframing those looks into saying “I know you’re so inquisitive, aren’t you?” It’s like, “I know, he looks so differently, doesn’t he?” Allowing for that conversation to happen. I’m so hopeful that the inclusion just allows for conversation and it allows for interaction with each other. And allows just the freeing of “Well, why does he do that?” And it’s like, well, actually, he’s just really excited. And he doesn’t use his voice to talk but sometimes it’s his flapping and his clapping and his real high-pitched tone, he’s just really excited. I think kids, the earlier they’re taught that, and the inclusion that happens from an earlier education standpoint, only benefits everyone. 

 

Meghan Forte: What advice would you give other caregivers?

Sarah Kernion: This is two-fold for me. One from the side of their role as a caregiver and one side from living as a mother who is a caregiver. My life is that because I chose a path. I always say to caregivers, especially with little ones, do one small thing that might take a slight bit of extra effort, and do it everyday, not with any expectation tied to it. For example, there’s snow outside, right? When I’m done with this, with the kids, we’re going to go outside. Now, likely, we’re only going to last about 2-3 minutes. But I’m going to try to show my kids how to roll a snowball. And we might not build the biggest snowman. We might not even build one! But we’re going to attempt it. My only goal right now is the fact that it snowed and it’s sunny outside. And to get dressed and go out and appreciate the snow, just like their older sister wants to do, and experience that gift. Nothing more, nothing less than that. And if all we do is taste the snow, great! Then we put our tongues into the snow and we taste it and we laugh. But being able just to do one small thing that might not be what the typical norm expectation of that is, just to go outside on a snow day and sled ride or build a big snowman, take it down to the smallest of wins. And I think you’ll find, as a caregiver, that it never really mattered what the end big activity was. It was just the attempt at it. Because, that gives the power back to the kid, that they’re worthy of that experience. It doesn’t take away from the experience at all. It’s still that energy, that desire, to try it. No one’s experience is going to look the same. I think it’s just so magical when you put the power back in the micro-moments of an experience. It’s like that quote, ‘It’s not the big things in life, but the little things that matter.’ My beloved grandmother, my mom’s mom, was like a second mother to me, and she passed away a few years ago. I used to send her postcards, like picture postcards of the kids, and not doing that [now] is almost more crushing to me than leaving. Like, not being able to FaceTime her once a day and just say, “Hey Gram! This is what the kids are up to…” That’s the little things. It wasn’t the grand vacation, it wasn’t the family reunion. It is the little things in almost every capacity, even when it comes to children with disabilities. Those things will rise to the top as being so important. When it comes to the caregiver too, I have leaned into owning the story of my life, and that caregiving is part of that story. And again, it doesn’t take away from who I am, it adds to it. It’s given me perspective on life that I feel so grateful to have at 40 years old, unlike a lot of my peers. I feel like I understand the depth of what expectations can do to a lived experience of having children. And what a lot of people don’t go into having children expecting them to be neurodivergent, and this sort of mismatch of why people grate so hard against it, and it ends up becoming the thing you love most about being a parent. Is that you did have a different curveball thrown your way and when you rise from that you realize that it only added to what makes you a better parent. I know without a doubt that I am a better parent to my oldest typical child because of my neurodivergent kids, not in spite of. It’s 100% because of who they are. That freed me to be the best mother to all three of them. 

 

Meghan Forte: What do you envision for adults and the future for employment for people with disabilities?

 Sarah Kernion: I love this question. I just got off a call this morning with a friend, and I was telling him, specifically with neurodiverse children and children with disabilities, the sooner that the general population can harness their ability to see the world and to find differences that are not being capitalized on, whether that’s in business, or on the playing field as an analyst for sports, or professional sports, or analyst or consultant, or massive real estate projects… the sooner that this country and this world can realize that the superpower is actually within the disability label. And that’s worthy of not only a salary, but an actual position of employment. And what that will provide, in opening up the world to include more individuals with disabilities, that’s when we really made a change. Because I know right now, my daughter loves watching football. She loves it. She will sit and watch live football if it’s on. And I watch her watch it. And I can only guess that she likes watching the plays. She really likes watching the same thing over and over again. And I find that there has got to be, at least in the next 10-15 years, a 

role for her as a football analyst. In the back office, someone who watches film over and over and over again. And finds a sliver of difference to help a team succeed differently. There’s no doubt in my mind, Meg, that a role like that exists. And I really hope that it goes beyond having basic skills, that it actually goes into corporate America and business analytics. The mind of children with disabilities and the way that they think and process life is seen as such a hugely monetized skill that it’s craved by companies. Microsoft and some of these companies are leading the way with specific HR programs to recruit people with disabilities because they have realized that there’s power in that. I really hope that career opportunities like that continue to grow. It will only happen if we talk more about it. 

 

Meghan Forte: In your experience, what type of therapies were beneficial for treatment? For instance, speech, occupational or other therapies? 

Sarah Kernion:  All of the above. I’m sort of the mom that likes to max out on that. Speech and occupational therapy are so much more than the therapy, it’s almost like the play that they crave within those interactions. They both attend a school for Applied Behavior Analysis (ABA) therapy for their educational purposes, and it is because of the related services of speech and occupational therapy that I believe ABA works even better. It’s not just one thing. It’s the exposure. I really believe that the exposure of all of these therapies can and should be provided to these kids, only increasing the synapses in their brain to grow and develop. Again, they’re not going to be typical, but it’s developing them to the best of their ability based on their play and speech, and their imitation skills and their desire to learn. It’s all still there, it just looks different. I always tell parents of young children that ask me, ‘What should I do? How do I start?’ and I say, “I know that it sounds like a lot, and it is. Max out on all those related services. Whatever you can do, do it. And whatever you find becomes a greater benefit to your child… if you see this speech therapist connects, and is getting sounds out of him that no other therapist could, trust yourself with that, as a parent. Trust your gut on that. You’re probably doing your child a favor because if they’re reacting so positively and their skill sets are growing because of the therapist, it has less to do about the actual kind of therapy and more about that relational bond that is able to pull out skills in them.” It’s all about relationships and knowing and seeing each other. 

 

Sarah  Kernion Biography:

 Sarah Kernion is a renowned Keynote Speaker, dedicated Neurodiversity Advocate, accomplished Writer, and, above all, a devoted mother to three beautiful children, two of whom have non-speaking autism. With her powerful and inspiring talks, she challenges the conventional approach to developmental milestones, advocating for an “INCHSTONE” mentality. This approach emphasizes celebrating small victories and atypical growth, as well as recognizing and leveraging the unique superpowers of autistic individuals. Sarah’s work encourages parents, companies, and professionals across various sectors to embrace and support the neurodiversity movement, making a significant impact on how autism is perceived and supported worldwide.

Professional Website: https://www.saturdaysstory.com/

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