Laurie Hellmann on Parenting a Teenager with Non Speaking Autism

Transcript for Podcast Episode: 154
Laurie Hellmann on Parenting a Teenager with Non Speaking Autism
Hosted by: Dr. Mary Barbera
Guest: Laurie Hellmann

Mary: You're listening to the Turn Autism Around podcast, episode number one hundred and fifty four. Today we have a special guest, Laurie Hellmann, who is describes herself as an autism warrior mom. She has an 18 year old with severe autism. And we talk today a lot about her journey, but specifically about her book and her podcast, as well as resiliency, how to always have hope and how your life's not over, even if your child, you know, becomes an adult and doesn't reach certain milestones. It's a great discussion. Hope you love it as much as I did. Let's get to this important interview with Laurie Hellmann.

Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, Autism Mom, Behavior Analyst, and bestselling author Dr. Mary Barbera.

Mary: OK. Laurie, it is so great to have you here today. Thanks so much for joining us.

Laurie: Thanks for having me.

Mary: So we've gone back and forth just corresponding over email and social media, and I saw a recent post and I was like, You know what? I want Laurie on my podcast. I've read some of your blogs and you're a beautiful writer. So can you tell our listeners about your fall into the autism world?

Laurie's Fall into the Autism World, Skyler's Diagnosis:

Laurie: Yeah, my son Skyler, who is 18 now, he was diagnosed officially at the age of three with autism. He kind of stumbled into that diagnosis at age two, and that became our world. Autism became our world. His neurologist, was treating him for seizures and mentioned the diagnosis to us. So we officially got diagnosed at three.

Mary: And you went to a neurologist first, and he said autism and then went to what? A developmental pediatrician?

Laurie: Yet it's actually the Christian Sarkin Autism Center up in Indianapolis, Indiana. That's their sole focus, and it's psychiatrists and psychologists. I believe on staff, probably others as well. And I filled out the whole bubble questionnaire. That's like five pages of all the things that your child can and can't do at that point. I mean, again, he's three years old, so there were a lot of you know and not applicable on that form, but she evaluated him with us in the room about 15 minutes. He had all the classic signs. He didn't respond to his name. He had no eye contact whatsoever. He was just kind of in his own world. And she was like, Yes, he's clearly on the spectrum. It was pretty, pretty clear diagnosis.

Mary: So how did you know he was having seizures? When did that start?

Laurie: You know, it was just kind of a random one night after his bath when he was two. I pulled him out of the tub and was drying him off, and he just kind of became limp. And so I pulled him out and looked at him and he started turning blue. So of course, I thought he was choking. I raked his mouth and was trying all these things, and we called the ambulance and they weren't really sure at the time. Then he had that same type of episode, probably weekly for the next couple of years. So the pediatrician was, you know, urgently got us in to the neurologist, and he did a little sleep study on Skyler, which was a little difficult for a two year old. But he had absent seizures. And so that was just how they how they presented. He just turned blue and just kind of went limp. So it was very scary.

Mary: Yeah, I bet, especially without a medical background to you're not you're not in the medical field.

Laurie: I am, but kind of by default, I'm in the pharmaceutical industry, so I know a lot, that makes me dangerous, I guess. OK, I got it, but I'm not a nurse now.

Mary: Yeah. So Skyler's 18 now. Hmm. And how is he? Is he severely impacted still?

Laurie: Yeah. I mean, I would say that it's always touchy because, you know, I think the community now uses the terms like Level one, level two, level three. They didn't have any of that back in twenty six when he was diagnosed. And even the word severe triggers some people. But he is severe, he is non-speaking and we still struggle with communication with him. So he he really needs our assistance for most things, his body muscle tone is still lower than anyone else his age. He can walk fine, but he has a really hard time getting dressed by himself and showering alone and things like that. So he is relying on us for everything.

Mary: Yeah. And was he a preemie?

Laurie: You know, not technically. He was born a month early, but and they treated him as such. But he he was six pounds, so he was, you know, pretty good weight. Yeah. So but yeah.

Mary: I forget where I was. I was reading some. And I thought maybe it was in your bio or somewhere I was reading something about a 23 week old, you know, preemie and I was like, You know, I'm getting my stories confused.

Laurie: Well, there's a lot of them, I'm sure.

Mary: OK, so but let's transition a little bit. We will roll back, I'm sure to Skyler because he has inspired you to do so much work and so much help for other people. So you ended up writing a book and starting a podcast. So which came first, and you just tell our listeners about, you know, both your book and your podcast, and I'm sure they're probably covering the same topics.

Laurie's Podcast and Book:

Laurie: Yeah, they are. It's funny. It's like the chicken or the egg thing for me. I did everything the wrong way, I guess. Or, you know, the not novel way I actually started the podcast first. The goal for starting the podcast was really because Skyler was getting teenage up her teenage years, and I'm constantly scouring the internet now that we have that available to us. And I just wasn't finding a lot of parents with children that are similar to Skyler's age or older. And I was desperate to find these people. I know they're out there, but maybe they aren't as social media savvy because, you know, they didn't have any of this stuff when our kids were diagnosed. So I started the podcast, and that has been a huge wealth of communication between other parents and connection. I have loved that. And then from that..

Mary: What's the name of that podcast?

Laurie: It's called Living the Sky Life, named after Skyler.

Mary: Living the Sky Life. I love that. And is it? Is it weekly? Is it interviews or is it solo?

Laurie: It is weekly, and it's mostly interviews. I don't know why. I don't do enough solo episodes. I probably should. It's a lot of pressure, as you know, to find guests for a weekly show. But so far it hasn't been too big of a problem. But, but yeah, I just love hearing everyone's stories and connecting with not just parents, but medical professionals. And I even did an episode with the producers from the the short, the Disney short Loop, the animated short they were on, and that was a remarkable episode. But yeah, so I started the podcast and then.

Mary: And when did you start that?

Laurie: Two thousand nineteen.

Mary: Thousand nineteen? Yeah, I started mine as well, and I am going to be on Laurie's podcast. We're going to record that next week. This is called a podcast swap. Yeah. So it's on mine and I go in hers so that we can reach, you know, Lori can reach people here that, you know, have older children more severely impacted and also professionals. I'm sure about lots of professionals listen as well. And then, yeah, I can go on her podcast and help people with a variety of issues as well. So excited about that. OK, so that's your podcast and then your book. What's the name of your book?

Laurie: And it's called I've got it right here. It's called Welcome to My Life. Skyler is on the cover. He's so famous I can tell him that all the time I'm like, You know, that's right, everybody knows who you are. It's called Welcome to My Life: A Personal Parenting Journey Through Autism, and that just kind of came about. I actually was starting another book about my childhood and just kind of growing up in dysfunction and how that made me the parent and the person that I am today. But that one wasn't writing very fast. I was just kind of stalling. I don't know why. So I was meeting with actually a professional coach who's a friend of mine, and I was talking about the podcast and different things. And she's like, Why are you not writing about autism? I'm and honestly, my thought was the podcast is one thing, but I don't want to always be known as Skyler's mom. Autism, mom, everything autism. I have another child who's neurotypical. I have a marriage. I have a full time job. I have other things going on in my life and my only identity isn't autism. However, it is what I know and I have an older child and I think I just felt like I have an obligation to myself and to the public to share the story for other autism families who are just getting started maybe or in the thick of it, or even people that don't have an autistic individual in their family. So they understand what this life is like, and maybe they can learn something from our stories. So I quickly switched gears and started writing the book, and it wrote very fast. From writing to editing and publishing was a full year, and that was it. And usually it takes a lot longer, as you know. So the book came out in June of 2020, right in the middle of the pandemic. But but it's OK. I didn't want to delay. I wanted to get it out, so.

Mary: Yeah, and. How's the been? How's the reaction to your book been?

Laurie: Really, really good! You know, I kept saying over and over if one person reads it besides my husband, if one other person buys it and reads it, that's fine with me. I just it was so cathartic for me and also just it was overwhelming emotionally to write about the memories from when he was little and the seizures and all that stuff that I had kind of buried a little bit. But to unpack all of the therapies and all of the things, it was great to see how far he's really come because you live it day to day and you think, Gosh, I just wish he could do this. I wish we were further in this area and I had forgotten just how far he's come. I mean, he didn't walk until he was almost three because of his muscle tone being so low, and he didn't sit up on his own until he was about two, never crawled. Things like that. I just kind of forgot when he's running through the living room and I, you know, you just you just miss all that stuff and you look past it.

Mary: Your typically developing child, are they younger?

Laurie: She is younger. She's 16, She's the little big sister.

Mary: I have that. It's best is 18 months younger than Lucas. And he he did a podcast episode with me on siblings that we can link in the show notes. And it's a really good. And so I think you and your daughter and your husband would appreciate it. It's episode eighty five. So and we met started corresponding because we're both involved with Kate Swenson from Finding Cooper's Voice. Yep. And she was also on the podcast episode Seven Day. We can link that on the show notes as well. There's a whole group of people who are bloggers and in online marketing space that are really connected through Finding Cooper's Voice, and she has a paid group called Coop's troops that are a lot of us are in. And she, like you and me, she has a son with severe autism as well, and he's 10 or 11. Your son's 18, my son's twenty five. So you know, you do some work too, and some speaking on resiliency and, you know, finding your purpose. And so why don't you talk to us a little bit about that? Your beliefs about resiliency and purpose?

Resilience Throughout the Challenges of Autism and Life:

Laurie: You know, it's funny that's evolved like anything else, you know, through Skyler's development and improvements with a lot of areas I've developed to, you know, you start out in one place when your child is diagnosed and there might be anger and resentment and things going on. I certainly had all of that and I was confused and I didn't understand why this was happening to me and to my family. And then why can't he just be neurotypical? And I mean, and I hate that I felt that way and went through that. But I think you have to go through that to then come out on the other side. I'm never the person to say autism is a blessing and it's a gift. And I just I don't think that way. I because I wouldn't wish this on more than me. I wouldn't wish this on Skyler. His life is difficult now for the rest of his life, and he has challenges that so many people don't. And it's, you know, if I could take that away from him for him, I would, but just kind of leaning into it. He has taught me, I say it all the time, so much more than I could ever imagine teaching him. And it wasn't until I wrote the book about our life and about autism and was in the process of writing the other one that I finally realized my purpose really from autism and having a child with this condition, I don't know if that's the right way to say it. But just with these challenges that I was born for, this kind of I mean, I went through a lot as a child. I had a severely alcoholic father, a very tough childhood. And I don't think that if I had grown up in the white picket fence, perfect family, you know, so to speak, that I would have the resiliency to deal with some of the things that we deal with, with the seizures, with the hitting and the banging and the pulling my hair and all of that stuff. He has taught me to be so patient and understanding, even on days where I barely have any of that in me. But there's a bigger purpose to all of this, whether I see it in this lifetime or I don't. He is teaching the world so many things about inclusion and acceptance and understanding and patience. So I have no choice but to be resilient for him to fight for him and kids like him. You know, for the rest of my life, that's what I'm here to do.

Mary: So, yeah, it sounds sounds similar to how I feel about it too. So what would you say to a parent out there, mom who's just got a diagnosis or a two or three or is having, you know, a seven year old with severe autism? Like, what would you say?

Laurie: Yeah, I would just highly encourage them to lean in and to definitely not be isolated. Again, I've said it before. We didn't have all of these mediums. We didn't have podcasts. Back then, there wasn't even a thing. Google was barely a thing if it was a thing. And certainly social media, all the different platforms that are out there now. You know, we just didn't have that either. So there's no reason to be sitting at home alone and trying to go through this. There are so many groups like Coop's Troop or Finding Cooper's Voice, and I'm always faithful to Kate because she opened up Pandora's box really. I mean, it has allowed us a platform to speak about the hard and the great times, so there should never be an unanswered question with anyone with a diagnosis, they should be able to to reach out to any of us. And I'm never going to give you the worst case scenario. All the negatives, if something that we did for Skyler didn't work for him. As far as therapy goes, I would still recommend you researching and looking into it, and it might be just the thing that your child needs that resonates with them. So I'm just here as a resource, and I know there are a lot of parents like me who are just one to want to be resourceful and helpful to other families.

Mary: Yeah, that's awesome. I read a book probably 15 years ago now called Man's Search for Meaning, and it's by a Holocaust survivor, Victor Frankl. It's a classic book and, you know, basically it. He was in a concentration camp and he was either going to get freed at some point or die, and he predicted that he only had like a five percent chance of actually getting free. But he made it his mission to be positive and optimistic every day until he either died. Or it would make the most of each day. And, you know, kind of look at lemons as lemonades and as positive as possible. And it's a really good book in terms of finding your purpose. And, you know, us moms of kids with severe autism, it's kind of like our purpose kind of got dumped in our lap early on. Yeah. For many of us. So, you know, somebody said to me, once you know, a lot of people spend their whole life trying to find their purpose and yours found you. Mm-Hmm. So it does, I think, change your whole worldview,your whole paradigm of expectations. You know, when when I was when we were riding home, right after Lucas got the diagnosis and my husband was saying things like, I guess he'll never get married and go to college are very pessimistic because I know a lot of kids who were diagnosed at that time who did go to college and learned to drive. And, you know, not a lot, but some, you know, and it's like. And I was like, We don't know what Spencer's gonna do. I mean, you know, there's no guarantee that anybody not going to get to an accident and have a terminal illness, you know, get addicted to drugs or, you know, like at that moment, pretty much on the ride home, it seemed like all expectations, like I had all these expectations of like white picket fence and, you know, had my kids being, you know, not perfect, but you know, you have expectations and they all just came crumbling down. But I don't think it's healthy to have these expectations of how things are going to be in five or 10 years. We have no idea, no control over that. So it's great to like, discuss this kind of thing with you because I feel like, you know, we have similar worldviews now. It's like even if you have a young adults with severe autism, you can still have a great life. Mm hmm.

Laurie: I do find it funny that we named him Skyler because I swear at least once a week, we say the sky's the limit for him. And I don't know if you're familiar with Kelly with Growing up Steven, and she's become a really good friend of mine and Steven is 30 or so.

Autism Over 18:

Mary: Okay, what's that blog?

Laurie: Her social handle is on Instagram is GrowingUpSteven. She is incredible. She's such a great resource and we talk frequently. And she said, you know, because I was telling her we were getting close to the 18 year old stuff. So we had to do his guardianship paperwork and we had to file for Social Security and all of the things that you do, you know, once adulthood hits. And I was telling her how sad it made me to do all that stuff. And that I feel like his progression has kind of halted at, you know, eight or nine year olds, you know, because he's not toilet trained and the communication is not there and some of those things, and it just kind of made me sad. And she said that Steven had a lot of his growth between 18 and twenty five. She saw some of the biggest changes with him. I don't know if it's a maturity thing. It's a hormonal thing. I don't know what the answer is, but she's like, the biggest point is that our kids are not 90. They've got an entire lifetime to do stuff. And so I think the other thing I would say to parents too, and I can, I'm sure you can relate is throw all the timelines out the window when any doctor tells you or any professional tells you like, well, if they're not toilet trained by four, if they're not speaking in full sentences by six or seven, you're probably never going to get that. That's not true. I mean, there are things Skyler I didn't think would ever do, and he's already doing now. It took him till he was 16. Maybe to do it, but I'll take it. I mean, any one thing you can check off that makes our lives a little bit easier and gives him some independence. I'm all over it. So I just I love getting this perspective from moms like you who are a few years further ahead of me and that can say, Just just wait. Just wait, wait, wait. You know, it's not over.

Mary: Yeah. Now I think that's excellent. I'm going to actually look up Growing Up Steven, and I think that's great. I also think that I should probably do a podcast on like guardianship and Social Security and stuff because that is a big deal. And yeah, and just as you're talking, I'm thinking, you know what? Lucas has made a ton of gains between 18 and 25 because at 14, basically 14 to 18, he was having aggression and self-injurious behavior on a regular basis. And it was scary because he was big and it was mostly related to when he was in pain or had startle, become startled. And I was racking my brain and taking him into all kind of doctors to try to figure it out. And it took me, you know, till 18 to find Dr. Michael Murray, who I did a podcast with one of my absolute favorites episode twenty eight, who's a psychiatrist? He also has a son with severe autism, Lucas's age, and he really helped me find the medication to settle Lucas's nervous system down, which ends up to be a cardiac med. And we talk about that in episode twenty eight. But you know, Lucas made a lot of growth once we got rid of the aggression and got self-injurious behavior down to near zero levels. He made a ton of gains with even during COVID because he was going to a pre vocational program otherwise known used to be known as sheltered workshops. So I used to be going to one of those places Monday through Friday, nine to three or 8:30 to four or whatever the time was, but it was like every day just kind of like school. And then that all shut down with the pandemic and he never went back. And in the meantime, you know, since COVID, he's lost 50 pounds. He's happier now. He, you know, gets to sleep in a little later. He is more motivated. He seems happier. We take data on his affect and his speed with volunteer tasks. And as you're saying, you know, this woman gave you the advice that kids can still make a lot of growth. Yeah, the sky is the limit. And no, we're not going to, you know, turn Skyler and Lucas into fully functioning, driving, going to college. But we can always move the bar up in terms of as safe, as independent and as happy as possible. And you know, we talked a little bit before we hit record that you know, your son's not yet the toilet trained and he's 18, and most people would freak out when they hear that. And you said you heard from me, like on my podcast and stuff, it's like it's never too late. In fact, I am going to, you know, see if I can help you either when I'm on your podcast or, you know, the same techniques that work for little kids work for older kids, but they have to be tweaked and adapted and but it's never out of the question. So I think just your resiliency to know that and just not to, you know, your life's not over. If Skyler doesn't reach this milestone or that milestone, it's you know.

Laurie: Yeah, I mean, I think our mission as parents in general is to help our kids succeed and become model citizens and independent in any way that they can. And I do feel blessed that I have. My daughter, Kendall, to model, I guess, that neurotypical things like college visits and driver's license and things like that, but I do everything for her to make sure her future is bright. Just like I do for Skyler, it's just different. So I mean, that's my mission. While I'm on this earth, I guess, is to make sure that all of my kids have happy, you know, lives fulfilled daily, you know, adventures and whatever they're going to do and just set them up for success. I'm never going to give up on either of them. So like you said, you never know what the path is going to be for any child. You know, I joke about it. It's kind of not funny, but you know, it's nice to not have to worry about Skyler getting into drugs or stealing my car. Or, you know, some of the brother sister fights about the bathroom or whatever that most teenagers siblings get into. I don't have to worry about those things for him. So, you know, it's a little bit less stress, I guess.

Mary: Yeah. And it all really boils down to the same thing. We want all of our kids to, you know, reach their fullest potential. And, you know, safety for your daughter looks different than safety for your son and all those kind of things that it's great. I really love the fact that I get to experience kind of some of those more typical things, too with my other son. So that's great. Yeah, no. I always like to end the show the same way. Part of my podcast goals are not to just help the kids. I think this episode really loved the conversation about, you know, resiliency and your life's not over if your child doesn't hit certain milestones. But, you know, we like to help our the parents and professionals listening to be less stressed and lead happier lives themselves. So what about self-care or stress management tips that you use to help yourself?

Self Care, Schedule Time for You:

Laurie: I think a lot of it comes with a partnership, so I mean, to start and my husband and I have this discussion all the time, but we actually both keep paper calendars still and we sit down every week and we kind of figure out who's picking up and dropping off and all those things. And then we carve out time for ourselves and it's equal. So, you know, he runs. He's a big runner. I used to be a big runner, but he runs every Saturday morning with the running group of guys, and I already know he's going to do that. And so I tend to Skyler on Saturday mornings and all of that, and he does the same for me. He lets me go for a run if I want to or go ride the Peloton or whatever. Exercise is hugely important because we both have noticed if we don't get that in, we're snappier and we're kind of grumpy and we just don't feel good to release that tension. Exercise has been our main way of doing that. But know if you don't have a partner, if you're kind of going at this solo because I did that for several years as well, you know, I just use the time that Skyler is at his ABA center to like, get my nails done once a month or go get a massage once a month. Just anything to relax myself and not think about autism for an hour. I think that's the biggest thing that I've learned that I need over the years. I ate, slept and breathed autism and taking care of kids and medicines and changes of clothes and just all this stuff. And it just revolved around and I was running ragged and I was definitely losing myself mentally. Physically, I was run down and I was no good to anybody. So as soon as I started taking time for myself and not feeling guilty about it, I mean, that's the worst part is you can beat yourself up and say, I can't really justify going to get a massage when I really should be doing this, this and this. Nope. It will wait that laundry, I'll be there. Anything that you have to do will be there. I guess I just liken it to when our kids were babies and people always tell you, take a nap while they're sleeping because you're never going to get that time back. And I didn't do it then, and I'm like, All right, this is my naps. This is my nap. While they're teenagers, while they're out of the house for the day, I'm going to do what I need to do. So that's kind of helped us, right?

Mary: And that's a marathon. So yeah, you got to take your breaks and take your self-care time. I love that. All right. Well, thank you so much for joining us today. I'm sure my listeners are going to love this episode and I look forward to being on your podcast as well. How can people follow you? What's the best way for people to connect?

How to Find and Follow Laurie:

Laurie: Yeah, my Instagram account is I try to keep everything named after my book to keep it all branded, but it's Welcometomylife_Laurie Hellman on Instagram. And it's Welcome to My Life -Autism Warrior Mom on Facebook, my book is available on Amazon, my podcast is on all major platforms, so yeah, I'd love to hear from people!

Mary: OK, and we will put all that contact information in the show notes as well. Thanks again, Laurie Hellmann. And we'll talk to you soon.

Laurie: Thank you! Sounds good.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop, where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.