Kelly Jensen on Hope, Advocacy, TMS, and the Autism Journey Beyond Diagnosis

Tony Mantor: Why Not Me ?

In this heartfelt episode of 'Why Not Me? Embracing Autism and Mental Health Worldwide,' Tony Mantor interviews Kelly Jensen, co-host of the Refrigerator Moms podcast and

Key takeaways

• Autism diagnosis in early childhood can shift family dynamics profoundly, requiring long-term adaptation and support.
• Advocacy is essential—parents must be bold in asking for specific needs to maintain balance and well-being.

Main topics

• Autism diagnosis in early childhood
• Parental advocacy in education systems

Notable quotes

"You just have to take a deep breath. And this is what we did. We did a deep breath and you take it one behavior, one step, one goal at a time."

Conclusion

Kelly Jensen's journey underscores the power of advocacy, resilience, and hope in

Transcript preview

Speaker 5 (0:02) Hey, this is Hayes Davenport and Sean Clements. We host the podcast Hollywood Handbook. Each week we talk to someone in show business and try to help them with their careers and see what they have to offer us. Everyone has a good time and no one gets mad at their publicist for letting them do our show. We've had a lot of great guests like Sarah Sherman, Adam Scott, Danny McBride, Ben Stiller, and a lot of other big shots that wouldn't be where they are without us. Listen to Hollywood Handbook on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 7 (0:30) On the new podcast, Solita, we share the messy reality of traveling alone as a woman. I can wait four hours for the next bus or this random dude is offering me a ride on his motorcycle. I chose option B. I'm Julie Pinheiro and I travel by myself because it's a rare space where I can say yes without asking anyone else first. I'm on a mission to reclaim the word Solita, trading the pity for possibility. Listen to Solita on the iHeartRadio app. Apple Podcasts, or wherever you get your podcasts. Speaker 4 (1:06) I survived nine months in captivity, and I've spent my life exploring how other people survive what should have destroyed them. I'm Elizabeth Smart, and these are The Survivor Files. Every week, I'm with survivors who live through the unthinkable, abducted, stalked, controlled, and nearly silenced. These are stories about what it takes to make it out alive. Listen to The Survivor Files with Elizabeth Smart on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. If Speaker 1 (1:37) your bookshelf and your For You page are equally important to your personality, welcome home. Pro Society is a weekly podcast that's part book club, part group chat for anyone who thinks Pride and Prejudice and Love Island deserve the same level of discourse. Each week, we're connecting the dots between books, the internet, and pop culture with your favorite writers, book talk creators, and plenty of overthought opinions. Yeah, I'm obsessed. I'm obsessed. Listen to Pro Society on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 3 (2:07) What if everything you thought you knew about autism and mental health wasn't the full story. Today's conversation might change the way you see it. Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide, where real conversations and lived experiences inspire understanding and hope. I'm Tony Mantor. This is where understanding begins. If this kind of conversation matters to you, then follow the show so you don't miss what comes next. Joining us today is Kelly Jensen. She brings a perspective shaped by lived experience, honesty, and years of advocacy. She is the co-host of the Refrigerator Moms podcast and a mother of an autistic son. Along with her longtime friend and co-host, her mission is to cut through the noise with compassion, humor, and hard-earned wisdom from the life in the trenches of autism parenting. She has also explored innovative treatment options to support a son, including the use of TMS. And she's willing to openly discuss both the challenges and hope that comes with seeking new approaches for autistic individuals. Thanks for joining us today. Speaker 2 (3:17) Thank you very much for having me on. I appreciate it. Speaker 3 (3:19) Oh, it's my pleasure. So let's start this from the beginning. I believe you have an autistic child. I Speaker 8 (3:25) do. Yes, I do. Speaker 3 (3:26) Can you give us a little background on what it was that made you realize something just wasn't right? Speaker 2 (3:32) He was kind of the classic, wasn't learning to speak. He, you know, a lot of people talk about regression of speech with autism. Right. Speaker 3 (3:41) It's Speaker 2 (3:42) not totally regression. It wasn't like the way a normal child develops Speaker 8 (3:47) language where first they're pointing and they're sort of during this toddler charades, right? And then they... are battling noises and then they put together a word and then they put Speaker 2 (3:57) together two words. Well, he didn't even do any of that. He would say a word and then you'd never hear it again. He would say, I want juice, full phrase, and then you'd never hear it again. And that's a little bit different Speaker 8 (4:07) than regression, but it is a very classic for an autistic person. Speaker 7 (4:11) And Speaker 8 (4:11) so that was. And that was, you know, about two years old. And he has a sister that is 17 months younger than him. And she was developing it laser precision textbook language and really had that, you know, comparison and early. She was developing early. Right. Her language was early. So we had that textbook example of what it was supposed to be like. And he wasn't meeting any of that. And so that was, you know, an automatic kind of indication. Speaker 3 (4:35) Okay, so how many years ago was that? Speaker 8 (4:37) My son is 26 now, and that was when he was, well, we really started noticing in about two and a half. Speaker 3 (4:42) Okay, so we're looking approximately 20 years ago. So at 20 years ago, autism was looked at completely different than it is now. It was the fear of the unknown with their child because they just did not know what to do. A lot of doctors did not know what to do. Speaker 8 (4:59) Right. Speaker 3 (5:00) So how did you approach it and how did you define it? In what it became, which was autism. Speaker 2 (5:06) Well, I think I might still be doing that. Speaker 3 (5:08) You could be right. Speaker 2 (5:09) Even now, we were in an information desert back then. And now I feel like Speaker 8 (5:14) we're in a disinformation urban setting. You know, so much information coming at you and that's not all good information. Speaker 3 (5:20) I totally agree. But Speaker 8 (5:22) you just have to take a deep breath. And this is what we Speaker 2 (5:25) did. We did a deep breath and you take it one behavior, one step, one goal at a time. And, you know, it's just a lot of long, hard days and a lot of figuring things out on your own. And, you know, hopefully you gather a good support system. You really just need good ideas. Speaker 3 (5:38) Yeah. Yeah. For Speaker 8 (5:39) how to translate your child's development, what's going to work for them, you know, what's going to work to acquire language, what's going to. work to acquire, you know, positive coping mechanisms for life's frustrations. Well, it's going to work. Speaker 3 (5:51) Right. Speaker 8 (5:51) Have some semblance of family life that, you know, gives you siblings. Yeah. Right. Speaker 3 (5:56) Because when a child is autistic, when he or she is learning, so are you. It creates that dynamic for anyone that's not in the circle or don't understand, and it can disrupt everything. So how did you cope with that? That's a lot of things coming from different directions to handle. Speaker 2 (6:15) I had a great friend that I met the whole, you know, kind of the first thing you do is you try to fix it. You're going to escape autism. You're going to learn. Your child is going to be cured. You do all the things and you go through the this and you're at this webinars and the enzyme information and you do it all. Speaker 8 (6:33) Right. Because you're Speaker 2 (6:33) in fix it mode and you don't realize you're in fix it mode. Right. Speaker 8 (6:36) But Speaker 2 (6:36) that's Speaker 8 (6:37) just a part of the week. Call it the journey to acceptance, speed to acceptance. You know, my friend Juliana and I. I met her on one of those journeys. Okay. You know, it was like a child's class, you know, like a My Gym class. And her son, who is also autistic, his back turned towards the circle and my son just kept screaming the word pizza. And so we kind of knew that this was, you know, a kinship that we shared. Speaker 2 (7:02) And then just a friendship grew from there. So I had her, I had a husband who was a great partner. Speaker 8 (7:08) Good. Speaker 2 (7:09) You know, and... You pick and choose and any parent that is going through this, for that diagnosis, you have to be very bold in your ask. Speaker 8 (7:18) Right. What you think you Speaker 2 (7:19) need Speaker 8 (7:19) at that moment. You know, tell people what they can do, not what they can't do. Speaker 3 (7:23) Yeah, you have to be the advocate for your child. And Speaker 8 (7:25) yourself. Speaker 3 (7:26) Yeah. Speaker 8 (7:27) You know, I'm going to need you to babysit my child for me on Fridays from four to six because I need that time with my husband. Right. Speaker 3 (7:34) Very Speaker 8 (7:34) specific and realistic in your ask. Speaker 3 (7:38) Okay, quick question, and then we'll get back to your story. How is he now? Does he speak now or is he still nonverbal? Speaker 2 (7:45) So he is 26 years old. He just moved into an apartment. Speaker 3 (7:51) Nice. Big Speaker 2 (7:52) life move there. Speaker 3 (7:53) Sure. He Speaker 2 (7:54) speaks. I would say he speaks about eight-year-old level. Speaker 3 (7:58) Okay. I Speaker 2 (7:59) don't know if you get the background story, but we kind of did this pivot when he was 22 and we tried a therapy called transcranial magnetic stimulation. Speaker 3 (8:07) Yes, we will definitely be talking about that. Speaker 2 (8:09) So that definitely brought out a lot of Speaker 8 (8:12) language. And so we've actually had a lot of language development from about 22 till it Speaker 2 (8:17) continues today. He's more verbal, which has been kind of exciting. Speaker 3 (8:21) Sure. Speaker 2 (8:22) But I'd say it's... He's still probably about eight, nine. He speaks about now and then until he's 22. Speaker 7 (8:28) Okay. Speaker 2 (8:28) I would say he was about, we would just say five. And it was really concrete stuff. Sure. We'd call them Bo-isms, you know, his name is Bo. So we'd call them Bo-isms and he would, you know, have a very unique way of describing things as it came to him Speaker 8 (8:44) and very concrete concepts. You really couldn't have a practical conversation with him. Speaker 3 (8:50) So tell us his journey from 5 to 22. You went through all these challenges. Some of those challenges are schooling, society itself. Can you tell us how you dealt with that? Because back then, schooling was a completely different animal dealing with people with autism. They didn't understand them. Sometimes a meltdown would come off as a kid just being bad. So not only how did you handle it, How did you address it with the teachers? Because they didn't understand it either. So how did you get him through the school years? Speaker 2 (9:26) Very difficult. It's a very difficult time. And one thing I want to tell all parents that are listening to this that are in the throes of school is that gets better. Speaker 3 (9:35) Yeah. It Speaker 8 (9:35) does get better. Life is better when school is over. It's very challenging. Right. Speaker 3 (9:40) You Speaker 8 (9:40) take it one behavior at a time, one step Speaker 2 (9:42) at a time. And you honestly, you're going to have good years and bad years. I was lucky to have some very great mentors in some of his therapists. Speaker 3 (9:52) Okay. So Speaker 2 (9:53) they were great collaborators and I leaned on them and it was a matter of constantly finding people that had good ideas for me for how to help him communicate better. Speaker 3 (10:04) Sure. Speaker 8 (10:05) Some of the things