24-08-2024
Navigating Life's Marathon: Kevin Johnson's Journey with Autism
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Hey guys, welcome to Adulting with Autism, the podcast where we dive into the roller coaster of adulthood through a neurodiverse lens. I'm April Ratchford, your friendly occupational therapist mom, proudly on the spectrum and raising an amazing young adult son with autism. Join us as we share stories, tips, and laughs, offering a supportive space for anyone navigating life's twists and turns. Grab your drink of choice, no judgment, and let's embark on this journey together. This is Adulting with Autism.
Hey guys, hey. Happy Saturday. I know I've been MIA the last week and I need to catch up. It's been a rough sort of week for the last couple of weeks, and I've been overwhelmed and having some doubts, and it's been tough. It's been really, really tough. Just like some of you guys, I do have doubts, and just like your moms and dads and other parental units, I get extremely exhausted and tired and the lack of community is hard.
And this leads me to my next guest. Kevin Johnson not only helped take care of his brother, he took care of another son he has that is on the autism spectrum. Now, his brother has an intellectual disability. He primarily helped raise his brother with his mom while his father was away. I think in the military, he'll give you more of an insight, but that helped him when his son was born and he and his wife found out that his son had autism, prepare for the difficulties that they had to face with everything, preparing their son for the hardships that we have to prepare you guys for.
And one thing he did say is that it's not a sprint. It's a marathon. And parents, we are going to be exhausted. And. We need to be a community. And that's what I'm trying to form is a community for us to lean on one another because it is a marathon and there's no other way around it. It's not going to be a sprint and it's going to take a while for our kids to launch and to find the resources that they need to be on their own. And there's nothing wrong with that, nothing at all.
And Kevin not only is raising his son with autism, he had two other sons while working, which is amazing and which all of us do. So we get exhausted. So kiddos, give us a break. Sometimes we zone out and it's only because we get exhausted as well. You got to remember, no matter how old you are, whether you're 18 or whether you're 25 or whether you're 30, we've been doing this your entire lives without a break. And we love you. We love you very much. But some of us are in our 40s. Some of us are heading into our 50s. Some of us may be heading into our 60s and it takes a toll. And we didn't plan for this and we thought we would always have a community and we didn't. So here I am trying to create a community so we can finish this marathon for you guys.
But let me tell you about Kevin. Kevin is the founder-in-chief, executive officer of the Johnson Leadership Group, LLC, and an independent certified coach, mentor, trainer, and speaker with the nationally recognized John Maxwell team, where he leads learning experiences that are tailored to meet the specific needs of the audience to help maximize efficiency, growth, awareness, and effectiveness. He's a native of Richmond, Virginia, and a graduate of Virginia Commonwealth University School of Business. He earned a master's certification in government contracting from the George Washington University, Washington, D.C. He completed a 34-year career with the federal government in 2017 and has been married for 30 years and raised three sons. Since 2001, he has written 20 books as a principal or contributing author on such diverse topics as faith, book marketing, blended families, finance, and leadership. His current book series, Leadership with a Servant's Heart, has earned 15 literary awards and is a two-time new release bestseller on Amazon.com. Recently, Kevin was honored with a Leadership Award from Men Impact Change in 2020 and Outstanding Leadership Award from Education 2.0 Conference 2023. His life's mission is to create a generation of next level leaders around the globe.
So you guys take some advice from Kevin because he's done it not once, but twice. So here's my guest. Welcome to welcome him to the podcast, Kevin Johnson. Welcome to the podcast. Thank you so much for coming on.
Absolutely. My honor and my delight to see you this morning. So tell my audience all about how you actually have a brother that has special needs and now you have a child that is on the autism spectrum.
Yeah, it's been a lifelong journey for me. I am a native of Richmond, Virginia, and I don't have any sisters, but I have one younger brother, three and a half years younger than I am. And we are the sons of a United States Marine, my dad, and then my mom worked in the federal government. So we moved around quite a bit. And when I was three and a half years old, my younger brother was born on one of the Marine Corps bases, Camp Lejeune, North Carolina. And the doctors advised us right after birth, when they examined him, that they were. Some issues with oxygen, sufficient oxygen getting to his brain during development in the womb. So he was born with a mental disability. And it was a challenge initially because it was primarily my mom and I at home helping to raise him, support him, negotiate on his behalf, love him, care for him because dad was away fighting in America's wars. Marines are on the front line. And so I learned a lot about this neurological disorder as a young boy helping to raise my brother. And then fast forward many years later, after I graduate from college, I meet this young lady who captures my eye. We start dating, we fall in love, we get married. And then from our union, we have three sons. And interestingly enough, they don't have any sisters, all boys again. The youngest son, Cameron, and he's 26 now, he didn't talk for his first two years. He didn't say a word. And something else was very odd about him as well. For his first three years, when the sun came up, he thought it was time to go to sleep. And when the sun went down, he thought it was time to get up and play. And so we finally had him diagnosed through one of the pediatricians. And sure enough, he was diagnosed at the age of two with autism. So here we go again, right? This time I'm educating my wife and my brothers on how to handle this situation. Again, negotiating on his behalf, advocating for him, serving him, and supporting him. And even to today, I'm doing both, more so with my son than I am with my brother. But it's just been an interesting journey to watch how these neurological imbalances and impact their lives and the lives of others around them. But at the same time, be laser focused on those areas where they're a genius. They're an absolute genius in other areas. It's just a matter of giving them opportunities and supporting them and loving them. So that's the two-minute executive summary version of how I've been involved in this process. Thank you.
What difficulties did you have with transitioning them from going from their school life to the adult world? Because I noticed that in some school systems that the transition is like rocky. Like you have, they guide you and then it's like a drop off.
Yep. Yep. There's no prep. You do fall off the cliff. Absolutely. So the biggest thing that I've been an advocate for and one of the primary messages that I send out to the community for parents that don't have children on the spectrum and parents that do, because we serve as mentors in that capacity, is to educate yourself. Get the education, heighten the level of awareness in terms of what's available, what services are available, what programs can we tap into to help them as best as we can become an all-around person. Because when they're in school, elementary, middle, and high, they have that infrastructure. It's in place. But once they graduate from high school and they start to move into that adult age, depending on what state they're in, 18 or 22, I'm sorry, or 21, it really becomes the challenge and the burden, the parent or the legal guardian. Or in our case, we're both. We're both legal guardian and parent. And just getting out there in a community, joining member organizations, partnering with other parents that are dealing with the same challenges, and you'll get access to information. And then from that information, you can start to use it and apply it to your son or daughter in terms of what works best. So we have our son actively engaged in a very, very well-run day program from nine to three every day, job training, therapeutic integration. He works with peers. He works with children. He gets a chance to go out into the community from time to time, social skills, sporting events. All of that is built in Monday through Friday from nine to three. And then every other Monday, he gets together with a group of 20 of his peers. And for about three hours, they go to the bowling alley and they bowl. They just have some fellowship and some bowling. Later this year, after the summer, we're going to enroll him in an art therapy where they do glassmaking, ceramics, portraits, pictures, and he'll be in an environment with his peers, but also older adults who are not on the spectrum and other peers who are. So to be a mixed environment, because he loves to do that. And so just kind of finding out what makes them tick as they move into those adult age. Sometimes we can just ask. You'll be surprised. They'll tell you in many cases, not all, but in many cases, they'll tell you what they're interested in. And then whatever we can do to find the information to help them out is always a good way to go. So that's what we've been doing day by day, week by week, month by month, year by year. It's a journey, but together we get there. We're working on independent living next. We're also working on getting him to be able to drive if that's possible. I share with him that's a four-phase process because you take your class, your learner's permit, and you take your written exam. Then you have to get behind the wheel with an official instructor. You have to pass that. And then you have to go back. Now you have to pass another written exam to get your license. So it's a process, but trying to get them to yes is always the key. So that's the journey that we've been on with our young assignments.
I know a lot of parents get really frustrated with their kids because it's like a tug of war because they want to be their own individual, but yet their maturity level isn't there quite yet. And they go back and forth, back and forth, back and forth. And sometimes it's a war zone. What advice do you have to give to parents that they will get there, but there's got to be some compromise?
Yeah, yeah, that's a good observation. We've all been there. Absolutely. I think it's a matter of really two things that come to mind. Number one, the more time we spend with them, the more we get to know them. And I'm not talking about just living in our household, being under the same roof. I mean, spending some time really, really observing what it is they gravitate toward, what is it they stay away from, and having that quality time, getting to know them that much better to help them to navigate the road. The second thing is just getting them as best you can. I know it's not easy. As best you can to try and do different things. We go to the swimming pool. We go to the movies. We eat a meal together. every other week we go together to get haircuts we go to certain restaurants because of his limited diet together we go to church together, And like I said, now he's been in his day program for a while, and we're going to be branching out and doing some other things, art therapy. And sometimes you'll get some feedback around, I don't really want to do that. And then other times they'll get involved in that activity and you'll discover that they absolutely love it. And that's a strategy that we can use to break through. But whatever it might be, we do have to be patient. It just takes time because neurologically, they're not processing like you and I process. It's just different. My son has been for years going through this thought that if we recommend something different or if we ask him to modify his behavior or if we make a recommendation that he could or should do something different, you know, whether it's washing clothes or cooking or cleaning up around the house, he interprets that as him making a mistake. And then he'll start to apologize. And I'm like, you didn't do anything wrong. I just want you to consider, you know, when you're cooking your food instead of turning the stove on high, put it on medium. But he interprets that as did something wrong. So it's the big things, it's the small things, but we just have to be patient over time. And I know it's not for everybody. Some of us have more patience than others. Some of us have more time than others. I get it. Some of us can handle pressure better than others. I get it. We're all over the place. But just try to be as patient as possible and get access to the resources for your local community. You'll find some good people that are part of these organizations who are willing to help.
How can you, like, because I know being on the spectrum, there's such a variety. How can parents best support other parents? Because I feel like when they're little, there's a good community out there for parents. But as they grow older it seems like parents kind of fall off the the leeway and it's just like there's not enough community support for as they grow older and i'm not sure if it's, once they grow older as they just get more difficult than when they're younger.
Yeah, there needs to be more groups. Yeah, it's a combination of everything that you just said, April, because what happens is by the time they grow up and move into adulthood, truth be told, you and I are tight. It has been a journey and we're tired. Right. And we're kind of throwing out that helpline. Can somebody please help me? I've dealt with this all of my life, and I'm just tired. I need some space for me. I think the way you ended your question is appropriate, and that's the key advice I'd give everybody. Get involved with some of the local organizations that are available, that have information for us to tap into, And then other parents who are dealing with the same thing that we are dealing with, whose head we can put on their shoulder and they can put their head on our shoulder, we can be there to support one another and give each other encouragement. I'm a member of our local autism society chapter here in Howard County, Maryland. I have been for years. And there are so many resources available. I'm a big proponent of the Best Buddies program. Really, really good. I'm a big proponent of local churches that have a special needs ministry because there's a lot of good resources there. Fortunately, because of where we live, we're in close proximity to all of these different programs and these different organizations. I have found that summer camps, summer camps can be helpful. That would be that person's opportunity to go away for about a week. I don't usually do it any more than one week. Just kind of go away for a week. Parents aren't there. Legal guardians aren't there. They're entrusted to a qualified staff that's there to support, and they're in the company of other peers, and they do all kinds of stuff. They do academic. They do social skills, therapeutic integration they swim they play volleyball horseshoes it's a great opportunity to kind of help them on their journey to become more independent as well but having those support network groups very very helpful for the parents and very very helpful for the legal guardians while we're also pouring into our sons and daughters to help them to be the best they can.
Have you found any vocational educational supports for the young adult if they decided they wanted to go on after high school? Because I know a lot of them want to. To do higher education, but it seems like some of them need extra support and a lot of the schools don't offer a lot of support.
Yeah. So two things come to mind. First and foremost, reach out to your local community college. Community colleges tend to be a little bit more focused in this area than the larger accredited four-year universities and colleges. They sort of have a different focus. But right after high school, my son went through a program called Project CERT. Project CERT. And it was available at our local community college, Howard Community College, here in Howard County, Maryland. And it was for a full year. They wore uniforms. They wore khakis. They had a blue long-sleeve khaki shirt that they wore. They did all types of different academics in the classroom. room. And they also boarded the bus periodically during the day to take different trips around the city. And they did that together as a peer group. It was part of their education for a full year that the county paid for as part of their services. And it was only for one year. I wish it was longer. But Cameron had an opportunity to work an internship for the Howard County government. He was an administrative assistant. He did filing and copying. He worked in an office environment. They liked him so much, they asked him to come back. So he did a second internship from there, and it worked out very well. It was an office setting, and it was in the confines of the Project CERT program. But that's a great way to launch our sons and daughters after they finish high school, whether they get an actual degree or they get a certificate. In my case, Cameron had a high school certificate. He participated and graduated. And the full high school graduation, cap town, all that good stuff. All of his teachers were there. And then he matriculated to Howard Community College Project Search Program. And that kind of launched him to what he's doing today from nine to three every day, Monday through Friday, with job training, social skills. They go out in the community periodically, therapeutic integration to prepare him for independent living. So try the community college right there in your area to see what academic courses are available for special needs students and enroll and get them involved. Absolutely.
Now, do you and your wife have any fears about, you know, once Cameron is ready to live on his own and finances the apartment that he may want to be independent, the driving? Do y'all think about those things? Because I know my son is not too far behind Cameron. He's 22. And God love him. He works at Kroger,
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