The Heartfelt Story behind a Mother's Dream to Take Her Autistic Son Hiking

I can see us making skyrocketing forward progress.

This is great.

And I was so moved by that because it felt like a failure.

SPEAKER_01: Welcome to Grit, Grace, and Inspiration.

I'm your host, Kevin Lowe, and I'm excited to welcome you inside.

What's going on, my friend?

How are you today?

Hopefully nothing less than a spectacular.

My name is Kevin Lowe, host of the podcast, as well as Transformational Life in Business Coach.

Today you are joining me for what is episode number 169.

Today's guest, Lisa Lewis, was introduced to me by Marjorie Turner Holman.

Marjorie was a guest inside of episode 133.

And well, if you want to hear another awesome interview, if you haven't heard the episode already, definitely go check it out as we talk about the healing properties of nature.

I'll be sure that I leave a link to that episode inside of today's show notes.

But the lady Lisa, who Marjorie introduced me to, has a truly mesmerizing story of herself.

A story of a mother.

Lisa's adult son, Sean, is autistic.

And this has had an impact on her family.

Lisa is somebody who grew up in the outdoors, who grew up hiking, who wanted to be outside.

And as a family, that is what she wanted as well.

But with a condition like her son has, it makes all of the world's senses dramatic.

Because as so many of us draw on the sensory aspects of the world, because we enjoy the feel of the cool breeze.

We love the sound of the birds chirping.

We love the feel of the sun on our face.

For somebody like Lisa's son Sean, it's too much to bear.

So now we enter a third person to the story.

And that is a man named David.

None of us know how the events of today are going to impact our lives of tomorrow.

And just the same, none of us know how the stranger we meet today is going to impact our lives tomorrow.

David, well, David would leave a lasting impact on this family.

On Lisa.

And he is as much part of this story as Sean is.

Because David would understand Sean.

He would realize how to help him.

You can basically say that he was the answer this family had been looking for.

Now, unfortunately in life, as I said, we can't control what happens.

Yeah, I mean, we can take steps towards goals and do what we want to do.

But the truth is, is that it's life.

And we don't understand how all the pieces fit together.

And well, it's our job just to live it each and every day.

Because we never know what tomorrow will hold.

The gift that we are given today may very well be gone tomorrow.

And that is the case with this story.

Because as quickly as David came into their life, David would leave.

Because they knew that David would not want them to stop.

And so they reached out to the community and they got help.

And they are continuing to live, continuing to thrive, continuing to strive forward, to make this life one that's worth living, even when suffering from something as traumatic as what her son Sean suffers from.

It's a truly heartfelt conversation with a woman who's just out there to try to make a difference.

A difference in her family's life, in her son's life, in her life, and maybe on a bigger spectrum on the world.

Maybe in your life.

Maybe that's why you're listening to this very podcast today.

With that said, I'm excited to get to introduce you to Lisa Lewis, the guest inside of episode 169.

Before I get to it though, I do want to remind you if you have not already signed up for my ultimate spring challenge, well, it is kicked into gear and going strong.

Of course, the doors, they never close.

So if you want to jump on in and get a little boost to your day, well, maybe this is your opportunity.

Head on over to let'shangout.live.

That will take you straight to the Facebook group where the challenge is taking place.

You can request to join, and baby, the fun is already underway, so don't miss the party.

Head on over to let'shangout.live and uh let's give your life a little boost with my ultimate spring challenge.

With that said, it is my pleasure to introduce you to today's guest.

Here is my interview with Lisa Flu.

Lisa, welcome to the podcast.

SPEAKER_03: Hi, Kevin.

It's so nice to speak to you again.

Thank you for having me.

SPEAKER_01: Absolutely, absolutely.

Well, Lisa, I would love to start kind of basic and we'll we'll work our way into your story, but you have this amazing resource, this website, hikingautism.com.

And how did that come about?

Kind of tell me the kind of story behind the website, this resource.

And and I thought that would just be a perfect starting point for us.

SPEAKER_03: Sure.

Thank you.

Well, hikingautism.com is really a website that's for anybody who likes nature, who likes hiking, who likes nature photos, and for anybody who's sort of looking for a little uplifting inspiration about just dealing with challenges in life, because as you can tell from the title, it has to do with autism.

I have two sons, both in their 20s, but my younger son is challenged by severe autism.

And when he was younger, we dealt with such heavy-duty challenges in terms of the ability to even go out any place, because a lot of people on the autism spectrum deal with really tough sensory processing disorders.

And in my son's case, and a lot of the other kids we've known growing up, that means that you experience sensory overload on all fronts.

Sights, sounds, touch, emotions, even though people tend to think that people on the autism spectrum aren't feeling as much emotionally, but they are.

So if your family member or friend who is on the spectrum suffers from the sensory overload situation to an extreme, you could end up in a situation like our family was, which was by the time our son got to be about 10, he would go into panic fight or flight mode.

So your amygdala, which is a part of your brain that's triggered when you're scared or have some kind of a frightening or sudden panicky experience, your amygdala is the part of the brain that kicks in with that and triggers us to go into fight or flight mode.

And they found over years with studies of people's brains that people on the spectrum tend to have an overactive or even larger amygdala.

So even though this sounds like a little scientific track, for most of us who are family members of somebody on the spectrum, we don't know any of that.

All we know is that we have a family member who, in our case, could barely even get out our front door.

He was so overwhelmed with sights and sounds, just lights turned on, or the sound of an airplane flying overhead that we might not even notice, or the taste of a cracker that wasn't the same brand or same lot numbers and other extreme sensitivities to food and everything that our son Sean really sort of shut down.

He would go into what we call shutdown mode.

And what that meant is the rest of our family of four would be shut down along with him because if we couldn't get him out the door to go anyplace, we were all stuck.

So we basically became sort of trapped in our own home because of poor John's difficulty with dealing with the world in terms of sensory things.

And so we actually had worked with like great teachers, great therapists.

We had spent hours and dollars and blood, sweat, and tears, you know, lots of heartache and lots of hopeful efforts trying to help him face the world and get out in the world and experience the world, at least to some degree, like the rest of people do.

But we got to a point where we spiraled down by the time he was in his early teens, we had spiraled down to the point where we were literally trapped in our house.

And I had, I'm a very hopeful, positive person, but I was really on the verge of despair, thinking we, our life, well, as anybody would want their life to be, was kind of over.

And at that point, despite having all sorts of wonderful teachers and therapists and people we'd worked with, I had almost given up hope.

And then we had this kind of mysterious, brilliant young teacher pop up into our lives, and he changed everything for us.

SPEAKER_01: Wow, wow, wow, wow.

Okay, so this is amazing.

I love the concept behind your website, this resource.

I I keep calling it a website, but it's more than a website.

It's it's a resource, and it's an amazing, just positive, uplifting resource, but that really kind of stemmed off of your own experience with your son Sean now wanting to help other people.

Yes, that's at the same time.

Yes.

Yeah.

I love that.

I love that.

So talk to me a little bit more.

Give me a little bit more of a backstory because I'm kind of interested both in your story, you know, coming from the perspective of nature, of hiking being a big part of your family, how that came to be equally as much as kind of interesting to learn more about your son Sean.

SPEAKER_03: Yeah, well, it's funny, until you stumble into this situation, you know, here I am, the sort of the hiker lady in our autism community.

You know, I'm the one that leads the group hikes for the autism society, which all stemmed from me doing this website.

And so I go, oh, you know, people look to me as a person that knows where all the trails are and where the hikes are.

And I go, well, geez, where does that come from?

They all think it's just with our experience with our son, Sean.

And the truth is that I grew up, I live in San Francisco now, which is a you know, city right next to all sorts of great nature things.

So it's a perfect environment for us to be able to do all this hiking and stuff.

But where I grew up was back east in far upstate New York in a really, really rural area where there really were not where I grew up there.

I always, my joke is what's the difference between the trails we hike on now and the trails where I grew up in upstate New York?

And I always say, there were no trails where I grew up.

You were just bushwhacking through the backwoods.

So I had three brothers and a beagle.

And either alone or just with my beagle or with some combination of my brothers, we spent most of our time outdoors because there really was not a lot of other activity to do besides walking a few miles or go play by the creek behind your house or ride your bike around these country roads.

And so, you know, we also had cold wintery weather.

And if you're from that environment, nature is your solace and your friend, at least it was for me.

I always felt as a kid growing up there that if anything was troubling me, the one thing I knew I could do that would make me feel better was to just go out that front door and walk someplace, whether it was alone or with my dog or any of my brothers.

And even in the winter, if it was 10 degrees below zero Fahrenheit, I'd still go for a walk with my dog.

And it and sometimes even those extremes of the weather would make you feel even more focused on sort of just calming stormy seas of your own emotions.

So I look to nature as my, for lack of a sort of specific religion, I guess if I was gonna say, I hear people say this all the time in the sort of nature community, that if we had to say we had a place that gave us a spiritual uplift, it's when we're out in nature.

And I would say that's been true for me since I was a young kid before I could even think of that concept.

So that, you know, when I was really stuck for what we could do with my son Sean, when we were really trapped, it came to me that maybe that was going to be a thing that could help him as well.

SPEAKER_01: Yeah, yeah.

But but at the same time, though, when we when we talk about this sensory overload, I mean, that is what nature can be.

And it's as peaceful as it is, it is full of senses.

And so so I can't help but think to myself of the irony that we have this kind of opposite forces of you growing up with this just more than just a love for nature, this just absolute passion desire to be in nature.

And now you have a son who it literally pains him to be in nature.

SPEAKER_03: Well, to be in nature, to be in a store, to be at school, to be any place was overwhelming for him.

So I thought if we could work past the outdoor nature sensory overload and get him to start to number one, tolerate and then number two, actually maybe enjoy the nature part, which took work.

It took every everything we do with Sean takes repetition sometimes over months, sometimes over years, to sort of desensitize and get him to tolerate a certain thing, so that, you know, just the noise of going to school or the noise of going to a store or the flickering fluorescent lights at a store, all these things can literally get a person on the severe end of the spectrum flat down on the floor in the middle of a public space where they can't get themselves up off the floor because they're just down on the ground with their hands

over their ears and their eyes, just trying to block out all of this sensory overload.

So you that was a very insightful point you're making about the nature, because as I mentioned, we had this young teacher who we had met when Sean was in his sixth grade year in middle school.

And he was a really brilliant young guy and was very quiet.

And he had to go to teach at a different school.

So we kind of lost touch with this young guy.

But I always remember, boy, that guy was painfully quiet and shy.

But boy, was he brilliant with these kids.

And he really knew how to connect with Sean.

And my husband and I would sit around as things spiraled worse and worse and worse, and we were more and more trapped.

We both would say, gosh, if only we could connect with that teacher again, because he was so brilliant.

And I just, we just knew in our hearts that that guy could connect and help us with Sean.

But we had lost contact with him.

And again, I was thinking, gosh, if we could get Sean even outside more, that would help.

And, you know, as I was at this, you know, standing at the edge of total despair, the phone rang right before the holidays, a couple of years after we hadn't seen this young guy.

And he we get this phone call and he says, Hi, this is David.

You probably don't remember me, but I just graduated with my master's in special ed teaching and he got his certification because I just wanted to thank you and Sean and your whole family, because you guys really helped me get to this point where I came to this.

And I go, geez, how could you think we forgot you?

We've been talking about you this whole time.

And he was already this like mysterious disappearing phantom figure who we had wished we could contact, but didn't have a way to get a hold of him.

So at that point, when we got this thank you call from him unexpectedly, I pinned him down to come see us and say hi to Sean.

And from that point, we talked with him and asked him if he could work with us privately to help Sean.

And that became the experience we had after that, which was very dramatic and uplifting and heart-wrenching at the same time, is really the trigger for me starting hikingautism.com.

SPEAKER_01: Okay, okay.

Wow.

Fascinating.

So talk to me more about this guy who you guys literally had a kind of a brief, you know, period of time knowing.

David, talk to me more about what made you spend in years talking about him and wishing that he could be back in your life because of how he was with your son Sean.

SPEAKER_03: Yeah, that is the it's the most, it's so fascinating because again, we are not wealthy.

So it's not like we have endless resources to spend, which you can spend on trying to help with therapies for a kid on the spectrum or other special needs.

But we, you know, middle class, enough resources that we were able to work with a variety of really good therapists and had, you know, good teachers at the public schools for the most part, some great ones.

But, you know, everybody would look at Sean and they would just kind of go, boy, you know, there's a tough case.

We really can't get, they would all look at it like, you know, we can't get past this bump with Sean.

Geez, we're trying all our tricks in the bag.

And and we just, we always felt like we were the outsiders amongst the outsiders because everybody would kind of they would still work with us, but we were still stuck in the best of the best.

We're still not able to make significant progress with Sean.

But this young guy, when he was an assistant teacher in Sean's sixth grade classroom, was like this magical Pied Piper figure.

He was so quiet, but you know, our son Sean was so overwhelmed he couldn't ride the bus to school on his own.

So I would have to ride the bus with him, or my husband would ride the bus with him.

And then when the bus would stop at school, it took 10 or 20 minutes to pry his hands off the bus handlebars, you know, or the poles in the bus to get off the bus because he every single inch of moving forward for him was overwhelming.

He'd get to the sidewalk, he'd be on the sidewalk for half an hour.

So when this young teacher was at that school, he would meet us at the bus, and he would just quietly, patiently either wait Sean out or very, very calmly say, You can do it, Sean, let's go, or you can do it, try again.

And he just wouldn't give up.

And he was very, very quiet, but firm.

And not only firm, but there was something in this young man's voice that conveyed a sense of belief in the other person.

He conveyed a sense of confidence that yes, you can do this thing we're trying to do, even though you feel it's impossible.

And me saying those words is not something that would register in Sean's language ability because he's classified as nonverbal.

He can speak a little bit, but he really can't have a conversation like this.

So when this young man could say in simple, quiet, but sort of inspiring tones to Sean, we're gonna do it, we're gonna walk down the hall, we're gonna go in the front door, we're gonna walk down the hall.

And Sean would get up and he would walk.

And this young man would walk down the long hallway to Sean's sixth.

Grade classroom with me tagging along because we'd have to have like a DVD player or something just to get Sean to like focus on something in front of him so he could keep walking.

It was an overwhelming thing every day.

But this young guy had a magic touch, and somehow his words and even his silence spoke to the kids he worked with.

And we could see that in that time we had him in the school situation.

We just had a sense about him, and we never forgot that.

And we were heartbroken when we lost contact.

SPEAKER_01: Yeah, wow, wow.

Uh basically, what I what I view this is is the other teachers who he had, even the ones who were great, they were great because they learned how to be great.

This man had a gift.

SPEAKER_03: Yes, absolutely, exactly.

He had a gift.

And when we said, Don't lose contact, let us know your contact information.

When we got that surprise phone call at that time and he reappeared just to say thank you to us, we invited him to dinner.

Said, would you let us, you know, come to our house for dinner, let us celebrate your master's degree with you.

And we knew that he was from another part of the country, away from his family.

He so he was already sort of isolated on his own because he lived far from his family.

And so we felt like we could be a bit of an extended family feeling to invite him for a dinner and to celebrate.

And when he was at dinner with us, reintroducing what we'd all been up to the last couple of years and telling him how tough things had gotten even worse with Sean, he revealed to us that he himself had been a special ed student when he was a kid.

And, you know, what my understanding was more like the kids who may get some extra resources, or in some cases, be in another classroom for things like dyslexia or some kind of a learning disability.

So this guy is actually one of the smartest people I had ever met.

He's a brilliant guy, but he had overcome being a special ed student himself.

And I think that gave him some like unspoken silent ability to sense what other kids were going through, even if the kids were not able to speak and say it out loud.

SPEAKER_01: Wow.

Wow.

I mean, how special is that?

I mean, that's really amazing.

Now, talk to me about when that first encounter when he came back.

Did Sean, could you tell, did Sean remember him?

SPEAKER_03: Yes.

Sean remembers everything.

And one of the things we talked about in those couple of years that we didn't get to see him was we go, oh my God.

So because Sean is lacking in the language ability, for him, the sense that he most used to organize his world and to feel less overwhelmed is he uses his sense of sight because for Sean, it's visual images that he can look at on a computer or in a little pamphlet of pictures we put together for him.

And because he can't, he wasn't able to say things with words so much, he could sort of point to a picture or we could tell what he was interested in by he would go on the computer and he could look up through photos and he would see all the people he knew.

So we would have a photo of every teacher, every therapist, every family friend, relatives, and we would say, Hey, Sean, this is so-and-so, and like give a name to the person.

And sometimes he could ask a person by name.

You know, he could speak enough to say a certain person's name, but we never had a picture of David.

And we go, oh my gosh, we never had a picture of him because we knew Sean was very fond of him.

And so that time when this teacher came back into our lives and had dinner with us, they said, We can't let you leave the house without taking a photo.

And it was very interesting.

We still have a photo of that time sitting with Sean and this young teacher sitting next to each other.

And Sean has his hand gripping in a friendly way, but gripping his teacher's arm, his forearm, as a way.

That's Sean's way of saying, I want you to be here.

I don't want you to go.

And you could tell when the young teacher came back in that Sean remembered him, and he does not forget anything, but we were really, we made a big point to get a photo so that Sean could then have a name and a photo that we say it's David, this is David.

And then he could ask for him again.

But yeah, Sean definitely remembered him.

SPEAKER_01: Wow, that is just so amazing.

Now, after this reconnection of you guys with David, did he remain a part of y'all's life for a while or did he have to move away?

SPEAKER_03: Well, he was in the process of, you know, he had just graduated, he got his master's degree.

So he was he was still doing a student teaching gig.

It was in mid-year at the holiday time.

So he was like finishing up a semester and he was gonna start looking for full-time teaching positions from the next fall.

And we, my husband and I would say, oh my gosh, he's finally we can get a hold of this miracle person who we've always thought of this phantom miracle person for Sean.

Here's David again.

And we cooked up the idea that maybe since he was sort of not in his full-time teaching thing, and then, you know, we still had from the holiday season at least until like August or something, that maybe we could convince him to work privately with us to help Sean, you know, get out or do something.

We just we knew whatever it was that was gonna help.

So with a lot of anxiety in our hearts, we kind of came up with the idea because we didn't know if he was able or willing, but we kind of came up with a proposal like, would you work privately on weekend time to help us with Sean?

And when we sent that email off to him after, you know, we had that initial dinner with him and enjoyed that.

When we sent that email off, my husband said, you know, it's like asking somebody to marry you because if they say no, you're gonna be totally crushed because he we saw such, he was just so brilliant and capable.

And him appearing in our lives was the first sort of candlelight of hope that we had felt in you know, a couple of years.

It was we were really in a bleak, dark place, and we're like, gosh, David is this bright spot of hope for us.

And so when he answered our email and said that he was willing to work with us, we were just, you know, tears of joy, like, oh my God, he said yes.

And then we had to figure out, well, then what are we gonna do with David to help Sean?

And that's where we had to come up with what is the activity that would be the best to focus on.

SPEAKER_01: Wow, wow, wow, wow.

How amazing.

How absolutely just remarkable.

So now, what did you guys decide on?

I mean, was what did David do to help Sean?

SPEAKER_03: Well, David would have done whatever we requested.

He had a lot of experience working with really students who had a lot of tough challenges.

You know, he was the young guy assistant teacher who would end up with the students who were really having a big meltdown or lashing out for some reason.

I mean, he knew how to calm down a student in like having a physical lash out situation, really having a big meltdown.

So he was able to handle those things and he was also able to help push students forward.

And so, since we were going to be off school time and just on our own, he and Sean and I had a little meeting one day when my husband and my older son were out one day.

We had this little pow-wow about what is it that we want to do.

We talked about what was going on, and he finally we talked and we talked about what was happening with Sean and what we were we would just needed help to get him out in the world.

He goes, Well, what is it that you would like to do?

What is the activity that you want to work on with Sean?

And I sat there, you know, quietly for a minute, really thinking, well, what is it that we could do that would be a stepping stone for Sean?

And secretly, because we moms put all our own needs to the side and sort of self-sacrifice a lot, I thought, what would make me happy for my life that would make this easier as well, that we could do together.

And so I had to get past a sort of, you know, croaking my, I mean, my my voice was cracking and I had tears welling up.

It was all I could do to get out one word.

I had to say hiking.

I want to take my son hiking.

And I really kind of lost it at that point because I realized, geez, that's what I want to do.

I want to go hiking and I want to take my kids hiking.

And so even Sean's big brother was trapped as well.

So we couldn't do things with our older son easily because you, you know, you come as a team.

So when I said that to David, he goes, Well, then we're gonna go hiking.

And I immediately jumped in with all the negatives that I was worried about.

I said, Well, but he'll get stuck on the trail.

He'll stop, he won't move forward.

He goes, No, no, we'll wait him out.

He goes, if we have to, we'll sit and we'll build a little fire and we'll sit there and then we'll move forward again.

No matter what I threw up as a possible block or obstacle, he said, we'll get past that, we'll do it.

And he just made me feel calmer with that very confident, quiet voice.

And so he says, We will go hiking.

That's what we're gonna do.

And we set a date to start.

And from that day forward, every single Sunday at 1 p.m., David would show up at our house, and one parent and Sean and David would go on and outing someplace to go hiking.

And unfortunately, it only lasted a few months because of very unfortunate, tragic thing that happened with David.

But in a very short time from that time we agreed to start hiking, Sean was out on a hiking trail every week, every Sunday.

So it was a miracle for us.

It felt like that, anyways.

SPEAKER_01: Wow, wow, wow, wow.

How absolutely remarkable.

Not only just the fact that this man, this man, David, was able to help your son Sean, but in turn, he was really able to help an entire family.

SPEAKER_03: Yes, that is so true.

Not only did he help our family, because of his help, you know, we're a constant work in progress, but because of his help, we were able to inch forward.

And then years go by, and after all these years of working at this and expanding our own horizons, somehow I said, geez, you know, I've got all these, because for Sean, everything is photographs.

I take photos, I have archives of every hike because then I can go back with Sean and look.

I go, oh, here's where we went today.

We used to do this with Sean all the time.

Now we kind of don't need to because he's so used to going out.

He doesn't need to sit at the computer and say, oh, here's where we went today.

But we used to do that after every hike.

We'd go back and look at pictures with him.

And I realized after a while that I had this huge archive of hiking trail photos.

And I go, gosh, you know, maybe somebody else would like to try these hikes.

And maybe there are other families that might want to try this.

And that it triggered the idea for me to do the hikingautism.com website, which eventually led me to leading other families on hikes through the local autism society.

But, you know, really it goes back everything that I do that helps other families or my own family.

I attribute it 95% to the wonderful work that David did with us, including a very tough first hiking outing, which is it's making me think of what you first said, which is that nature is also filled with sensory obstacles.

And the first outing we did with David was a perfect example of just what you were saying.

He it was a tough first attempt, but we got beyond that because of David.

SPEAKER_01: Yeah, well, that's me.

Well, that that kind of leads in perfectly with my next question was asking, could you kind of summarize in a way, do a kind of comparison and and probably more contrast, what it was like from the first hike with David to the last?

SPEAKER_03: So we only had David for a few months because tragically he had a hidden heart issue that nobody knew.

He was a young athletic guy.

He would ride miles on his bike to get to our house, then we would go for miles of hiking, and then he would ride his bike miles again home.

He was a very fit young guy.

So this is sort of just setting up that, you know, we had a limited time with this brilliant, wonderful guy.

But the contrast between the start and just a very short few months later is that again, as I was saying, your point earlier on about how nature pummels us with sensory overload issues.

The very first hike, I said to myself, okay, I'm gonna drive Sean and David and myself to a place that Sean used to be able to go when he was younger.

So Sean used to kind of be able to go out.

And as he got into like 10 or early teens, you have all sorts of things that make that sensory overload and the meltdowns even worse, like hormones kick in, and there's just so much that happens that we had gone from being able to take Sean on hikes when he was little to not being able to go any place.

So I said, okay, David and Sean and I are gonna go to this place that Sean knows.

It's called the Marin Headlands Visitor Center.

And there's a trail that Sean had been on before that goes down to a beautiful beach on the Pacific.

I was like, we can get there.

We're gonna get Sean there.

We're gonna get him to get out of the car, which sometimes would take half an hour because he was just didn't want, you know, he would have his hands over his ears and his eyes and just like cling to the car seat because he didn't want to get out of the car.

It was too much for him.

But we're like, no, no, we're gonna get there.

He knows this place, we're gonna go down that trail, and we're gonna have this great first downing.

Well, sure enough, it was a cold, windy day.

It was cold.

Sean refused to wear a jacket because that was another sensory thing.

He didn't want to wear a jacket.

There was something about it that bothered him.

So he was not gonna put a jacket on, no matter what.

So it was cold and he wouldn't put a jacket on.

And it took us about an hour in that parking lot to get him to get out of the car.

And then when we got him out of the car, the wind was so strong and cold that the poor kid was cold, but he wouldn't put his jacket on.

And we'd like, okay, what do we do now?

So we spent about three hours at the top of this hilltop at this parking area.

And we only managed to get Sean to walk to like the visitor center entranceway.

He wouldn't even go in.

We had to go back.

It was late afternoon.

We had to go home.

And I said, I get home, and I was in tears.

I was like, oh my gosh, I failed.

I failed because there I took these guys to a place I knew Sean would be able to go to.

And we couldn't.

It took a lot of hard work, and David learned a lot of what Sean's challenges are.

But I thought we'd go down to the beach and walk up the trail.

And we didn't do any of that.

We barely moved for these three hours.

I get home and I'm feeling dejected, but very grateful to David because I knew he had learned a lot.

And at least we got Sean across the Golden Gate Bridge to this place.

And that evening I get an email from David that says, that was a huge success.

Congratulate yourself and Sean for doing such a great job.

And he goes, Sean has such courage to keep getting up and to keep trying.

You have to give Sean credit for the courage he has to face every day.

And he did great.

I can see us making skyrocketing forward progress.

This is great.

And I was so moved by that because I felt like a failure.

Yes.

And I go, oh my gosh, he thought that this was a successful outing.

And the way he presented it made me feel like, okay, we're going to get up and go and try again next week.

And sure enough, the next week, when we went out again, 1 p.m.

Sunday, he rolls up on his bike like clockwork and he shows up and we pick a place and we go someplace.

The next week, Sean got out of the car in only half an hour instead of an hour, and we walked.

We walked.

We did a full walk in a beautiful place.

And even though Sean would kind of start and stop, and people would probably think it's funny to see us because as a person on the spectrum who has the sensory overload, he would be walking with somebody and he'll stop and he'll put his face on your shoulder and kind of bury his eyes and his ears into your shoulder to keep the rest of the world out.

And then he would have to stop and do that for a few minutes, and then he'd kind of regroup and we would move forward again.

But when we went out with David, all of those little regrouping things for Sean to start and stop got shorter and shorter and fewer and fewer because there was always this calm, reassuring voice that said, You can do it, try again.

You can do it, Sean, try again.

And when David would say that to Sean, I felt like he was saying it to me.

And he'd say, You can do it, try again.

We're gonna do that.

He never, ever stopped trying.

And sure enough, Sean would do stuff, new things, every outing because of his confidence that he imparted to Sean.

SPEAKER_01: Wow.

What I love about this, and what I love about the way in which you speak about David and his interaction with Sean is that David saw Sean as a person, as Sean.

He didn't see him as somebody with something wrong.

SPEAKER_03: Yes, that is exactly, exactly right.

That is so insightful because you know, for those of us in the special needs world, and so we're in the autism part of that, we've seen things evolve over the years.

And as a person with any kind of what's considered as a disability, people look at your issue as something that needs to be fixed.

And especially kids on the spectrum, when we started out with Sean, there was this concept that, oh, we're gonna recover him from autism.

He's gonna get better, we're gonna fix him.

So that anything less than him just instantly becoming a normal person was that we were all failures.

And what you said just now is the embodiment of what made David so wonderful is because Sean was a great person just the way he was, but we were gonna help him walk a little more easily and help him engage in the world more easily for his sake, for who he was.

What you said is just perfect.

Sean didn't need to be fixed, but he could use some help, you know.

SPEAKER_01: Yeah, yeah.

Oh my goodness.

So by the, I know you said it was a short time, but by by the end, were you able to go on a hike as a family?

SPEAKER_03: Well, see now just you asking that makes me feel like crying.

I get I get very emotional about that because the big issue about being a family with a severely disabled family member, and in this particular case with Sean's particular issues, when we try to go out in public, it stands out.

So, for example, we have friends where maybe their child has cerebral palsy and they're in a wheelchair, and that family might go around with their child in the wheelchair, and people can wave and say hi.

And the kid in the wheelchair may also be able to wave and say hi.

But here we are with this able-bodied kid who could drop to the ground in a meltdown at any given moment or not speak easily.

But then when he does speak, there's no volume control.

So he sounds like he's yelling when he does talk.

So every time we try to go out, we just got more and more isolated because, you know, we felt we couldn't go to restaurants anymore.

And you'd think a hiking trail is like the easiest of places, but because there aren't as many people around, but we we just got so disheartened because we would try to go to places that Sean used to go, like he used to love the zoo, and he would drop to the ground and stay on the sidewalk for two hours and we'd have to turn around and go home.

We just got where we didn't feel like we could take him any place.

And so while David was with us, the relief of having a person with us who felt that it was okay to be out with Sean.

And it was okay if Sean had to stop and lean on somebody's shoulder.

And it was okay if Sean even dropped to the ground, but we're gonna get him up out of the trail so he's not blocking somebody, and we're gonna give him a hug and pat him on the shoulder till he's ready to go on.

David made it feel like there was nothing wrong with us, it was the Other people who were funny for looking at us funny.

And so we would take turns because our older son didn't get a lot of attention.

So if I was on a hike with David and Sean, my husband would go to a museum with our older son.

Or if my husband took a turn with David, I would go do something with my older son.

Because our older son really missed out on a lot of sort of normal activities too.

So as we were going on, you know, David would talk to us about, oh, and you guys could do this or do that.

And I, my voice would catch in my throat and I could feel the tears well up.

I was PTSD is something that's a specifically diagnosed condition.

But I think I can say that we had a PTSD-like sense of the world.

So I mean, I can't say we all officially had PTSD, but it was something akin to PTSD that when we think about taking Sean out at that time, our hearts would sink.

It was like a cloud of gloom would come over us just at the thought of trying to go anywhere.

And so that fear of something bad happening made it even harder for us to feel like we could get up and get out.

So as we were working with David, I was like, oh, maybe someday, maybe someday.

But even as we were able to go with David, he would mention us being able to all go out on our own.

And I just felt my chest tighten up with fear because I was like, no, we can't go without you.

You're our magic feather, you know, like in Dumbo's like, you're the magic good luck charm that's gonna keep us able to go someplace.

We're not ready to go out on our own yet.

It was a very frightening and overwhelming to try to take Sean out.

And almost more so because when we had a person who was so good at helping us, trying to go out on our own again just felt very bleak and gloomy.

SPEAKER_01: Yeah.

No, I I can I can imagine.

I can imagine.

So we've talked about David and you've alluded to the fact that he had something happen.

He he passed away.

Would you talk to me about that experience?

What happened?

What, you know, even just from your perspective, because you've made a mention that every Sunday on clockwork, he would be there.

And so would you mind reliving that experience with me?

SPEAKER_03: Sure.

Yeah.

I mean, that's just such a it's like the most iconic moment of my life.

Really, I'm, you know, been around for a long time now, and I've had various big dramatic things in my life, as anybody has.

If you've lived long enough, you've lost people, you've had various sort of big moments in your life.

But I, to this day, the loss of David is the most striking, iconic thing that has ever happened to me.

And this is, you know, years down the line now.

So for three or four weeks before we lost him, he started to complain that he was having a hard time breathing, or he felt a tightness in his chest.

And everything he talked about sounded like a person who was having adult onset asthma.

It all sounded like a respiratory thing.

And we would say, David, you need to go see somebody about that.

And we it got so that the last, well, maybe it was the last four or five times we saw him, he would mention it.

And he was the kind of person who really would not talk about something bothering him.

So the fact that he would mention it was a big deal because he wasn't the kind of person who would admit anything was wrong.

And then each week he would say it a little bit more, and I go, Oh my gosh, you know, you we really need to get you to a doctor and please put us on your emergency call list.

I so I was having mom anxiety.

So I he felt like an extra brother to me or an extra son to me.

He really was like part of the family, and I felt this very profound connection to him like a brother or son.

And I was having mom anxiety about David because he would mention this.

And each week it wasn't getting better.

And I thought, geez, something's going on here.

And finally, the last week, he actually went to the emergency room because of this chest pain and breathing stuff, and they couldn't find anything.

And they even did like a heart, like an EKG or something.

And, you know, he was seeing people and he had medical people within his own family, and nobody could figure it out.

But, anyways, we're still on track.

He's supposed to show up that next Sunday.

But I kept that week in mom mode, mom worry mode, I would email him every day, say, What did you are you okay?

We just want to check in before you go to bed, see if you're okay.

Do you need anything?

And he would always write back.

And by Thursday of the last week when he was supposed to come on that Sunday, I never got an answer back after Thursday night, just checking in with him.

And Friday, no response.

Saturday, no response.

And I basically told my husband and my older son, I said, David's dead.

I know that something happened to David, and I just feel it.

I feel it in my bones.

He's gone.

He's either in the hospital, unable to communicate, or he's dead.

And and I sounded like a crazy person, but I instinctively felt that.

And so it's getting towards Sunday and it's getting towards one o'clock.

But here's the funny thing.

We love David so much.

He was he lived far from his family.

When we had fed him a meal, he goes, Oh, this is the first home-cooked meal that I've had in, you know, a year or something.

And we go, Oh my gosh, we've got to feed this boy.

So I would bake something every Sunday.

And I like work seven days a week.

So me taking time to bake is really a big deal.

So I would bake something every Sunday.

So when David came back from a hike, he would have somebody had made something homemade and nice for him to have something to eat.

And so that Sunday, after we didn't hear from by email for a couple of days, I was like, okay, Lisa, whatever your instincts are, you're gonna get up like any other Sunday, and you're gonna bake something that David would like for when he comes back from that hike.

You're gonna make him a nice cup of something and give him something to eat and fresh baked goods because he loved baked goods.

And we just, we felt like extra parents to him.

So I got up and I baked something for David.

But the interesting thing that was a real sign to me how convinced I was that he wouldn't show up was is that I wear glasses to work at my computer, which I'm always at my computer working.

But when we go on hikes, I would put contact lenses in because I could see much better and I could drive better.

And I really enjoyed the hiking time with contacts because I could just see the world better.

So every time David was gonna show up before one, I would get my hiking stuff and I would put my contact lenses in.

But that Sunday, I said, Lisa, if something happens and you're suddenly crying and the tears are bursting through, you're gonna lose your contact lenses.

I said, you know what?

You keep your glasses on, and when David shows up, you can switch to your contact lenses.

It sounds like a funny thing, but it was a very specific instinct I had that I might be crying my contact lenses out of my eyes.

So one o'clock shows up and David is not there.

And he, I mean, you could just see him riding his bike.

He would, his bike would roll up exactly at one every Sunday.

It's one o'clock, he's not there.

It's 102, he's not there.

I forced myself to wait until 105 to call his number.

When I called his number at 105, it was message answering machine, you know, message center full.

And I said, That's it.

David is either dead or he's in a hospital someplace.

And I knew that by five after one when his message center was full, because that meant that other people had been trying to call him.

So I told my husband to just keep a hold of Sean.

And I grabbed my older son and we we looked at the street address that we knew David lived in an apartment on the other side of the park.

And I was like, come on, we have to go see what we can find out about David.

And I took my older son and we drove over to his apartment.

Not, you know, we didn't really, I mean, we knew he had a landlord there someplace.

The landlord was out, but there was somebody else who said, Oh, they should be home.

And we waited for over an hour for the landlords to come home and convince them that we were people in David's life who needed to know what had happened to him.

And they were very leery about telling us, but then they said he's dead.

And I mean, just I knew it.

I knew it was gonna happen.

But of course, I was just, you know, sobbing, holding my arms and, you know, rocking myself back and forth.

My older son went and threw up in the bushes.

I mean, it was just the most devastating thing.

And they said that his coworkers had said, hey, he didn't show up for work on Friday at his school.

And so they made a wellness check to his place and then found that he had died in his sleep.

And it took a while to figure out that it was a heart issue that is very, very hard to detect.

And it's one of those heart things that you read stories about athletes.

You know, you read about a football player dropping on the field, or you read about a basketball player dropping on the court with a very hard to detect underlying heart thing that can just suddenly take a person.

And that is what had taken David.

SPEAKER_01: Wow.

What a tragic ending to that relationship.

Yeah.

And I mean, in it, in, you know, we we kind of talked about this earlier when you're talking about when David asked, you know, what do you want to work on?

And you felt selfish, saying hiking.

And when we talk about David, you you almost, and I'm just talking from from my perspective, putting myself in your shoes, you almost feel selfish and like, but no, we need him.

SPEAKER_03: Yes, yes, yes.

That is so true.

But when you lose somebody, the perspective on it comes from all sides.

And the very selfish side of it was uh, you know, he embodied our sense of hope for Sean.

I mean, if David had brought us a sense of hope again, I was like, wait, you can't be gone because you're our hope.

Yes.

And if you're gone, my hope is gone.

And the other thing he used to say, no matter what the weather is, he goes, Sean and I will be here.

We're gonna go out, rain or shine, no matter what.

We're gonna go out, rain or shine.

I will be here every week, rain or shine.

And he would say that.

And as I was crying, I mean, I went through, I mean, I'm still in a grief period years later.

I'm still mourning the loss of this person, but have turned it into something positive.

But I used to say, wait, no, you said you would be here.

You can't be gone.

I mean, I other people that I found knew him and had similar.

It's like, no, you can't be gone.

You, we need you.

And it it's a selfish part about grieving the loss of someone, but you feel that because the person was so important to you and so meaningful to you.

SPEAKER_01: Wow.

And I mean, it's just I listen to this and I think to myself, like, talk about just that that idea of, you know, it's not the what is it, the years that we live in life.

It's it's the life that we live in the years, you know?

And and he lived that life by making a difference in people's lives.

SPEAKER_03: He really did.

I felt that he, so not only for our family, but my husband and I used to say, this young man has such insights and such an inner sense of what it is for these kids that he's gonna make a mark in the special needs world and we're gonna help him do that.

And one of the things that happened during the months that we were able to go out hiking together is one morning, it was like maybe five or six in the morning, and I just sat bolt upright in my bed.

And my husband looked over and he goes, What's up?

He goes, I go, Oh my gosh, we have to write a book about this.

And I said, I've got all these pictures.

I take notes about every single hike with David.

I keep a journal about it, sort of as an information thing to see what was working with Sean and what wasn't.

I go, we have to write a book about this.

And when I and he, my husband says, You're right, this is really important.

We have to write a, you know, you've got to write a book about this experience with David.

It's important for other people.

And the next hike I was on with Sean and David, I I sort of sheepishly said to David, David, I just want you to know I'm planning to, you know, at some point write a book about this work because I think it's gonna be helpful for other people.

And he gave me this look, like he looked at me from the side and he goes, Well, I was gonna write a book.

I was gonna write a book about it.

And I think his intention was that he might have been thinking to write like an illustrated children's book or something, but I was talking about like a full nonfiction book kind of thing.

unknown: Yeah.

SPEAKER_03: And I said, Look, David, you write your book.

And I said, if for any reason you can't write yours, I'll write it.

And then it truthfully, I said to myself, I'm gonna write a book about this experience with David, but I'm gonna encourage him to do his as well because he was thinking about, you know, making a nonprofit that would have, you know, adult services for people on the spectrum.

He was really thinking ahead for needs that we still have today, years later, that there aren't enough resources.

But when I said to David, I will write a book about this, even if you can't, it was to me, it was a solemn promise that I made to him.

Because I felt that his work needed to live on and that his story needed to live on, and that just one inspiring person who gave of himself the way David did could have a ripple effect to inspire other people.

First of all, if you're my family, that you wouldn't be afraid to ask for help when you need it, which we really were afraid to ask for help.

We really became more and more isolated and just felt like we were closing ourselves off in the world.

So, number one, don't be afraid to ask for help.

But number two, whoever you are, whether you're David or somebody else, you have something that you could offer to other people that could help someone.

So don't be afraid to ask for help and go ahead and offer whatever it is that you have to offer the people around you, and you'll be making the world a better place.

And I just wanted to share that about David because what might seem like one small family story to us felt like a big story to me.

SPEAKER_01: Yeah, no, and I'm and and and I believe it just it holds so much significance on so many different levels of, you know, ranging from the impact that one person can have on an entire family, the impact that one person can have on just the entire life of a family, you know, and and just so much of that.

Now, did you go on to write a book?

SPEAKER_03: Well, you know, this is makes me feel I have a manuscript that I'm trying to clean up right now, and I'm always like, oh, Lisa, you've got to clean up the manuscript and get that out to agents because it I believe that it is a really inspiring story.

But, you know, COVID hit and then Sean's services were dealt.

So this is the catch-22 of being a very motivated autism mom who also is trapped within the circumstances of very few on-site hours for our son because of the COVID close down things and staff shortages.

To this day, at this point, he only has 11 hours because he's aged out of the school system.

So he only has 11 hours of on-site time at his program.

And he is as much progress as he made, he still is a very energetic, likes to get into things person.

And so one of us really has to have our eyes on him.

So we have a hard time just finding time to work and pay our bills and have the other one watch him, or somebody's trying to cook and the other person watch him.

So the book got put on the back burner for the last three years.

And so I'm just brushing up my manuscript now, getting ready to send it to agents again.

SPEAKER_01: Yeah.

Well, you know what though?

I feel like you got to give yourself a break because when we talk about the past couple of years, I believe as though like the year 2020, 2021, they didn't really even exist.

It was kind of like we all fell in a hole.

And so I I feel it, I feel like we can almost minus off those years.

So you're really not that far behind, you know?

SPEAKER_03: I feel like a failure, though.

No, you're right.

No, you really are right.

And I think that's true.

And I appreciate you saying that because I sit there and say, sometimes I feel like a failure as a mom because I think, oh my gosh, I can't help my son more.

I can't help my son more.

And then I'm like, Lisa, here is this book you've been working on, and that's been on the back burner all this time.

So yeah, but that makes me feel better.

SPEAKER_01: Absolutely, absolutely.

Well, Lisa, I want to sincerely thank you for for sharing not only about you know your you this amazing website you've created with the blog and and all that you do on there, which I will be sure that that is left inside of today's show notes for anybody wanting easy access to Lisa's website to to learn more, to read and keep up to date.

But I also want to thank you for for sharing such an intimate story with me, with my audience, which again, I believe it just it goes back to this deeper meaning, this deeper message that this whole story portrays.

And and I think to myself, is is you know what?

Every one of us need to strive to be a little bit more like David when we meet people, when we encounter people who are different than us, who have different abilities, is to approach those people with the same mindset that David approached Sean.

SPEAKER_03: Yeah.

You know, that is a really great, that is a great way to look at that.

I really appreciate that because that really was the magic of David, is that he just appreciated Sean for Sean, and Sean was just another person.

And I really feel that when he was gone, that I sort of picked up his baton and carried that forward so that when the hikingautism.com website kind of got going, and then the autism society asked me if I could lead other families on hikes.

When I started that out, I go, oh my gosh, here are kids as challenged as Sean was.

And I could kind of step in David's shoes and help those kids the same way.

SPEAKER_01: Yeah, I love that.

Oh my goodness.

So I have one last question for you, and that is for you to speak directly to the mom, the father of a kid with different abilities, a kid who's just like Sean.

Do you have any just one piece of advice, one thought of encouragement, something that you could say to them right now to kind of, you know, restore hope?

SPEAKER_03: Well, that's a great question.

And as a parent, you evolve over the years, how you look at this and how you're able to deal with it.

And I know it's difficult for parents to cope because you're trying to help your child and you feel that you can't do enough.

But I would say to stop each day, or each hour, even is what it sometimes feels like.

But stop each day and think, does my child know that I love them for who they are?

And if you can keep the spirit of that unconditional love for loving your kid for who they are, whatever their challenges are, even if it's something where they're lashing out and maybe like hitting or biting, you say, Oh, there's a reason that that's happening, and it's not bad intention on anyone's part, that we all have good intentions, we're all gonna do our best and to take each day, remember that they're there with unconditional love and to never give up.

If everybody could just have David's voice in their ear and say, you can do it, try again.

And if that means you have to try the next day and the next day and the next day, you don't stop trying.

You don't give up, you just keep going with a spirit of moving forward and you love your family member and you remember to love yourself because we all deserve the pat on the back to know that we're trying our best and to just not give up on our family member or ourselves.

SPEAKER_00: I love it.

SPEAKER_01: Hey, real quick before you go, I have one last thought to leave you with.

I of course hope that you've enjoyed today's episode, but more importantly, I want to remind you that I never want you to listen to an episode of this podcast to hear something that I have to say or that my guest has to share and think, wow, I wish I could be like them.

I wish I could overcome my own challenges and do the great things that they are doing, but I just can't.

Well, friend, that's where you're wrong.

unknown: You're wrong.

SPEAKER_01: You are capable, you are able, and you darn sure are deserving of having all that you can imagine in this life.

There's nothing special about me or any guests I have on this podcast.

We are all just normal people trying to make it in this life.

And so I encourage you to take a look at yourself in the mirror and remind yourself that you know what?

I can do it too.

Now, of course, if you would like help along that way, reach out to me.

Whether that's as a listener of this podcast, a friend, or if you'd like to work with me as a coach.

My contact information is inside of every episode's show notes, just like this one.

So go down, check out my contact information, and reach out to me today.

With that said, I encourage you to take on the day every day with grit, grace, and inspiration.