Tony Mantor: Why Not Me the World

Michelle Morton: Crafting Communication and Overcoming Sensory Challenges – A Journey of Autism Advocacy and Resilience

• Tony Mantor

Share episode

Send us a text

What happens when your child's first words start to disappear? 
That's the heart-wrenching question Michelle Morton faced as her son's communication skills regressed and sensory challenges emerged. 
In this episode of "Why Not Me? The World," Michelle takes us through her powerful journey, highlighting a pivotal moment at Chuck E. Cheese that confirmed their suspicions of autism. 
Through her candid storytelling, Michelle shares how specialized therapies at High Hopes in Franklin, Tennessee, and the adoption of sign language helped her son make remarkable strides in communication.

Navigating the complexities of raising an autistic child within an inclusive school system is no small feat. 
Michelle opens up about the crucial role a supportive educational environment has played in enhancing her son's social interactions and speech.
Listeners will gain insight into the daily challenges of sensory sensitivities, feeding therapy, and family dynamics. 
Michelle's account vividly illustrates the triggers of meltdowns, the importance of self-regulation, and her son's ability to hyper-focus on certain interests, providing a nuanced picture of their experiences and milestones.

Looking toward the future, Michelle reflects on the hopes and challenges that lie ahead over the next five years. 
She emphasizes the necessity of consistent therapy and the heartening progress her son has made, from developing a love for baseball to showing affection more freely. 
The episode concludes on a note of gratitude and inspiration, inviting listeners to share their own compelling stories. 
Tune in to celebrate resilience, progress, and the unwavering support that defines Michelle's journey with her son.

https://tonymantor.com
https://Facebook.com/tonymantor
https://instagram.com/tonymantor
https://twitter.com/tonymantor
https://youtube.com/tonymantormusic
intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me, the World? Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism Around the World. Hi, I'm Tony Mantor. Welcome to why Not Me? The World. Today's guest is Michelle Morton. She will discuss her journey of supporting her autistic son. As a mother, she has learned valuable lessons that she's going to share with us today.

Speaker 2:

So thanks for coming on. Yeah, absolutely, thanks for having me. Oh, it's my pleasure.

Speaker 1:

So I understand that you have a son that's autistic, correct? Yes, okay, so how old is he now?

Speaker 2:

He is going to be four in June.

Speaker 1:

Okay, so how old was he when he was diagnosed?

Speaker 2:

Just a little over a year ago.

Speaker 1:

What were some of the things that led you to believe that something was not quite right and that ultimately led you to get him diagnosed?

Speaker 2:

He was hitting all his milestones and doing really well as a little guy, you know and then all of a sudden he kind of started regressing. And then all of a sudden he kind of started regressing. He wasn't talking. He wasn't saying really anything, he wasn't speaking at all. In fact he was screaming. When he needed something, anything at all, he just screamed. So that was really frustrating because we couldn't communicate with him.

Speaker 2:

Then we noticed other stimulatory type of behavior, like he would just get overstimulated. And I think what was the nail for me not in the coffin, but you know the hammer hit the nail on the head was we went to Chuck E Cheese for my grandson's birthday and you know how overstimulating Chuck E Cheese can be just for a normal person. While we were there it was pretty horrendous. We had already at that point kind of sought out and been to the pediatrician and was lined up to be tested. When we went to Chuck E Cheese it was almost we know he has autism because it was just. It was just absolutely horrible. When we went we actually had to leave.

Speaker 1:

We were probably there 15 minutes and and we had to leave so it was sensory things were loudness and just all that got to him yes, just all the noise and the uh.

Speaker 2:

You know there's video games and there's people everywhere and you know it's just madness as it is right when, when we were there with him, he was just, he could not control himself yeah, that's really tough.

Speaker 1:

So since you've got him diagnosed, has his verbal skills gotten better and his temperament got better, so that overall you can see a step forward oh yes, absolutely.

Speaker 2:

We were very insistent on the best care and we're both in the healthcare field so we kind of knew kind of which avenues to go and we were really lucky to get in a place called High Hopes with him to be evaluated and then we were lucky enough to continue on with them and he's had therapy with them OT, which is occupational therapy, and feeding therapy and speech therapy three times a week for the last year and about a couple of months maybe.

Speaker 1:

And that's right here in Nashville right.

Speaker 2:

They are in Franklin. Yes, franklin, tennessee, yes.

Speaker 1:

Okay, Franklin. So how long was it before you started seeing some progress once they started working with him? I've heard so many different stories where some would just automatically start really grabbing a hold of it and others would resist. So how was it for him? Did you see an impact fairly quickly?

Speaker 2:

Almost immediately oh wow Good. Yes, I mean, after the first few sessions we were already seeing, we were already able to communicate with him, some because they started oh, wow, good. There was one word that actually just kind of changed our lives. It wasn't a word, it was a sign, and it was for more, when he wanted more of a drink or he wanted more of something. Him being able to sign more was kind of life-changing for us, because all he could do was scream. He didn't know how to communicate.

Speaker 1:

Now you say sign language. Is that the standard sign language that you see out there, or is it something specifically for autistic people?

Speaker 2:

No, it's just normal sign, asl, sign language and you know he started off using sign language and now we don't need to use it anymore. Sometimes he'll still do more when he needs more and drink when he needs a drink, but that's just out of habit. He doesn't need to anymore because he can actually say those words now.

Speaker 1:

Oh, that's great. So I know a lot of people started out with pictorial, using iPads, etc. Is that something you started out with or did you not have to do that?

Speaker 2:

They wanted us to, but we refused. He was not frustrated with learning, which if he would have been really frustrated and regressed from it, then we would not have done that but he was moving along really well and we did not want him to rely on that. We wanted him to be pushed to speak, if that makes any sense.

Speaker 1:

Absolutely Sure.

Speaker 2:

Some children get more frustrated because they just can't speak. But he was doing so well, phenomenally well, that we felt like that wasn't for him, so we actually refused.

Speaker 1:

Well, that's great that it worked, because that's the beauty of being able to look at each individual autistic person, because it's such a wide spectrum. So the bottom line of this whole scenario is that what you did worked and because of that he's in a better place for his future.

Speaker 2:

Yes, absolutely Now. If we had started seeing him regressing and getting so frustrated, we would have resisted as long as we could, but we didn't want him to rely on ipad for communication sure.

Speaker 1:

So how does he get along going out into situations now? You had that major meltdown a year or so ago at chucky cheese. Has he developed and evolved better now so he can go into situations like that, or is that something you still try to avoid?

Speaker 2:

we have a place that we go to that is not as bad as chucky cheese, but it it can get very busy, and it's called we rock the spectrum. Have you ever heard of that place? I have. We do things like that, but chucky cheese, no, we do not. We also. We also have five children all together, and so we have children that are in sports and things like that, and one of us still stays home with him while the other one goes to the sporting event. Or if we're able to both go and get a babysitter, we do, but we don't bring him in those situations because we know how hard it is for him.

Speaker 1:

Sure.

Speaker 2:

You know he can't sit at a basketball game and he can't sit at a, you know, at a ball game. He just he can't. So it's better for him not to right now. But things are getting better. I even take him to the store once a week and walk around with him, Like if I need to get two things at the store. Before we couldn't do that.

Speaker 1:

Right.

Speaker 2:

I would take him and hold his hand and walk around the store and he would help me pick out the two items that we needed, and then we'd walk to the checkout and he would help me check out and he helps me check out. So that's, things are better, but not to the point to where we're just all in yet, if that makes sense.

Speaker 1:

Absolutely so. What are the ages of your other children?

Speaker 2:

So we have a 33-year-old with three grandkids.

Speaker 1:

Okay.

Speaker 2:

And we have a 20-year-old 19, 16, and Levi, who's almost four.

Speaker 1:

Okay, so I'm assuming that out of the five, he's the only one that's autistic?

Speaker 2:

Been diagnosed with? Yes, we have our suspicions. We do have our suspicions, but yes, he's the only one that's been diagnosed.

Speaker 1:

Okay, so he's the only one that's diagnosed autistic out of five. How does he get along with his brothers and sisters and how is the interaction between them?

Speaker 2:

Oh, yes, they're such good big brothers and sisters they really are they will do anything. They help all the time. You know, they help us all the time. They play with him, they take him outside to play, they play games with him. Yes, they are wonderful. Yes, they are wonderful.

Speaker 1:

That's just so good to hear, because the one thing you hear sometimes is the parents just don't have a good support system.

Speaker 2:

Right, right. Yeah, he has some amazing brothers and sisters that jump in and help all the time. They really do.

Speaker 1:

That's just so awesome. So what's the school system look like for him now? Is he going to preschool?

Speaker 2:

private school. What's his placement there? Yes, he goes to preschool two days a week in Fairview, and so that's like all day, pretty much like from like nine to three, and so he does that twice a week, along with, of course, we do therapy. We're there in Franklin for four therapy sessions per week, and then he's home with me.

Speaker 1:

So how does he handle the two days in preschool that are fairly long?

Speaker 2:

He loves it.

Speaker 1:

Oh good.

Speaker 2:

Yeah, some days are harder than others. I think one of our biggest challenges and I never I'm a nurse but I don't think I realized that with autism how difficult transitions can be. Transitions meaning when you drop a child off and when you pick a child up, so that you know, going from preschool to me and from me to preschool it can be very difficult. The transition from me to them and then back to me is often difficult and still is, which we work on that all the time in therapy. They know that's probably one of our biggest difficulties right now that we have.

Speaker 1:

Now the school that he's going to. Is that a special needs school, or is it a school that blends in neurotypical and autistic along with special needs?

Speaker 2:

It's all inclusive. There's some of all.

Speaker 1:

Good good.

Speaker 2:

Yeah.

Speaker 1:

So that's really good that you've got a good school system. Because of all the people I speak with, that is their top agenda is getting a good school system, because most systems aren't prepared for it. They don't have enough people to take care of special needs and neurotypical, so that's really good that you've got a good system like that.

Speaker 2:

Yes, yes, he's got a good group of little friends that he just is one little boy that he really has really kind of gravitated towards and I know sometimes that can be difficult with autism and he's done really well.

Speaker 1:

Yes, that is really really good. So what about textures? I know some have problems with textures of food, textures of clothing. Does any of that bother him?

Speaker 2:

Yes, we're in feeding therapy every week, so his palate is a lot better than it was because of that. As a general rule, he likes crunchy textures. As far as food goes, most everything he wants is crunchy. And then with clothes he's done fairly well. He doesn't like tags, like, if there's a tag in his shirt, that's his one biggest thing. And for most everything else he's done pretty well, not quite as terrible as some situations.

Speaker 1:

That's really really good. So what are some of the things that you see that he might be excelling in now that a year ago you didn't think was possible? He's talking, oh good.

Speaker 2:

The fact that he's talking. He's actually saying sentences now and it's quite tear-jerking at times because if I watch videos because I had a YouTube channel that I just haven't kept up but if I watch those videos of him a year ago, he's just a different child altogether. He's not frustrated, he can communicate. We were driving down the road just a few minutes ago and he saw a dump truck and he was like mom, dump truck. That was just something that he we didn't know that he would ever be able to do. That, to be honest.

Speaker 1:

You mentioned that it affected him when you dropped him off and then, of course, when you picked him up. Now you've got a large family, so how does it affect him with the interactions of everybody coming and going and living their own lives? How does that all fit in so that he can adjust to the different timings of everybody moving around in just normal life?

Speaker 2:

Um, it's difficult at times. You know, when one person's coming in like if his Bubba we call him his Bubba if his Bubba comes home from college, he gets really overstimulated sometimes when Bubba comes home Because, number one, they play hard, they, you know, they tickle and they run and they chase and so he sometimes the transition when Bubba comes home is a little rough on both of them because he's so stimulated, he's so stimulated because he's so excited and then when Bubba leaves he gets, you know, it gets a little bit sad, but you know, the transition of coming and going with with the others is is just as difficult. Yeah, and it's ongoing. That's an ongoing issue, yeah.

Speaker 1:

Okay, so now, what about meltdowns? You mentioned that he had that issue at Chuck E Cheese, but now time has progressed, things have changed. You've had him in therapies and a lot of different things. Does he still have meltdowns? Is it a daily thing or once in a while? How's he doing on that now?

Speaker 2:

It's not near as often. He still has them some. There are lots of difficult situations that come about mostly in the afternoon, when things afternoons are his hardest times, and if he's going to have a meltdown it's usually in the afternoon. It's not typically in the morning. I think it's just because his body's just kind of worn out. But not near as often do meltdowns happen as they used to, and that's because he's able to. I believe with autism they have to learn how to get regulated, regulate their body, and if he is not regulated then he will have a meltdown pretty quickly.

Speaker 1:

What about focus and attention? I've heard from several different people that when their son or daughter gets focused on something, they just will not give up until they've learned everything they possibly can, and they just keep on going until they feel like they've attained all the information they possibly can. Is he like that at all?

Speaker 2:

Yeah, he does. He, sure, does he. You know, if he wants something and we're saying no, he can't have it, that will be a fight for hours, like if he is focused on I'll just say we took his, we took a toy away as robot truck. He loves a robot truck. If we took that robot truck away because he was misbehaving, he will focus on that robot truck for hours. Yeah, so, or if there's something that he wants to play with, he can focus on that for a very long time.

Speaker 1:

Okay, so have you seen where he might focus on something that he really liked, but yet he's got some things that he doesn't like? Or is he open to looking at several different things, so that way he can have opportunities to choose from all that?

Speaker 2:

He's willing to try a lot of different things. I was just thinking about that the other day. He really loves trucks and things like that. More recently, like a little dollhouse thingy and a Barbie that went with it, we bought this big pink. It's not a bus, it's like a little dollhouse thingy and a Barbie that went with it, we bought this big pink. It's not a bus, it's like a camper, it's all pink. And then he bought a and we got a pirate ship. So like he's not doubly focused on, like he can only play, he will only play with trucks or he will only do this. He really has an expansive mind.

Speaker 1:

I think that's really good. So he's young, so this question may or may not apply. Some autistic people, as they age get older, become so literal that they have a very difficult time understanding what a person is saying to them, whether it may be a, a joke or lighthearted, or if it's really serious. Do you see anything in that from him yet?

Speaker 2:

Yeah, where he doesn't see the emotion or feel the emotion. Yes, there's just small things that happen. Where he'll be, he just doesn't think about the other person's feelings or emotions. Yes, yes.

Speaker 1:

So when he's talking with people this is a great thing about kids autistic or neurotypical the things that comes out of a kid's mouth, you just never know what they are going to say. They're very honest. So do you see him having those characteristics? And whatever he thinks, he just says oh yeah, oh yeah, absolutely.

Speaker 2:

And he's still little and I don't know that that will ever change because, like you said, some people with autism are just very literal and they can't break down not can't, but they don't sometimes break down the fact that they might hurt somebody's feelings. If they say something, they say it a certain way. It may just be that they say it and it may be something that me or you would never say. But yeah, there are some instances and I can't think of the exact examples. But yes, he's still little. We work on feelings and things like that a lot with therapy. So he is starting to learn things. Like you know, mama's sad If I, like you know, look down and I try to look like I'm sad. You know, we try to work on those emotions. So that's hopeful. We're hopeful that he might do a little better than he is now.

Speaker 1:

It will help him grow and excel and give him opportunities to really develop and be able to do pretty much everything that you kind of hoped that he would do.

Speaker 2:

I sometimes will watch, especially with occupational therapy, with OT. At first they're just building rapport and relationship and then they start working on like their peer to peer relationships, so they will team up with another therapist and another child. If they see that that child, those children will play well together. And so there have been a couple of situations where sharing, just plainly sharing, is a huge thing for children with autism sometimes.

Speaker 1:

Wow, that sounds really good.

Speaker 2:

He was crying while he was having to share, but I never thought that he would actually willingly take turns like he took turns this one time I was watching Pretty phenomenal. And that is all after both children are regulated, because they work on that regulation before they start working on like real hard things. So it's about getting regulated first. So I've learned you know he's got. He has to get regulated First thing when he starts his day. He has to get regulated, got to do whatever it is that you know heavy lifting, jumping, you know whatever it is that has to be done.

Speaker 2:

We work on regulation so that he can work on the harder things and we also do just to roll this over we always do occupational therapy. If anybody out there has a child with autism that goes to therapy and if they don't do occupational therapy before they do their other types of therapies, then I would request to change that, because occupational therapy will get them regulated, their bodies regulated, before they do their other types of therapies. And I would request to change that because occupational therapy will get them regulated, their bodies regulated, before they have to go in and do that hard stuff like speech therapy and feeding therapy and those other therapies that are more intricate and more difficult for them because they have to sit or they have to work on things, and so if their body's regulated, then they're able to work on those things a whole lot more, and that's the one thing we have learned with occupational therapy.

Speaker 1:

Okay. So now you went through the first couple of years. Everything seemed to be going okay and then all of a sudden boom, like you said, the hammer hit the nail and you knew something was not right. So you find out he's autistic. Now you know how it's affected him and you've talked about that. But now let's turn this around a little bit. How did you feel and how did it affect you moving forward?

Speaker 2:

You know, for a moment, I think I had a moment where I was sad. I don't know, I don't think I had time to really realize what was happening to me, but I do think I had a moment where I was just sad because I know that it can be very difficult for anyone who has autism, no matter where they are on the spectrum. There's going to be more challenges, as if there's not enough challenges in the world, and so I think that I had a moment where I was sad. Then I pulled on my boots and I said well, this is what we got to do. We got to get him the help that he needs, and I quit my job and I had to because there's no way to get him to therapy and everything he needs to get to. So I quit my job and poured everything into him.

Speaker 1:

That's great. I think that was the right decision for you. So how did your husband take it? Because usually there's a difference between the mother and the father in the way that they may approach it.

Speaker 2:

Well, so I have to correct you because I know that you probably don't know this, but I'm married to a woman. Oh, okay.

Speaker 1:

So I guess the correct question would be how did it affect her?

Speaker 2:

Yeah, so she gave birth to him, she gave birth to him, and so you know as far as how it affected her. She may have even been a little more sad than me.

Speaker 1:

Okay, that's understandable, I guess. So how is she doing now? You've gone through the therapies, you're doing all these things and he's growing and evolving. You're seeing the odd changes. Is she in a better frame of mind now after all this?

Speaker 2:

yeah, yeah, and she's a nurse practitioner, so she's even more uh as far as being in the medical field. She's even more was even more knowledgeable than me about a lot of things with autism, so she was able to navigate and actually actually was the one that got that appointment with high hopeses, which has, by the way, been the savior for our son. If anybody, I just plug in for High Hopes. They are amazing. They are the reason why our son is doing so well today.

Speaker 1:

Oh, that's really good.

Speaker 2:

Yeah, so I mean she immediately started channeling her thoughts into what do we need to do next?

Speaker 1:

That's really good. That's a great way to look at it, a great way to go about it. It just brings everybody together. So well done. So my next question is what do you see for him in the next five years? Do you see him completely adapting and being able to grow into what you had for original hopes for him? What's the five-year window look like?

Speaker 2:

I do think so. I think that we will do everything in our power, because that's just kind of the people, the way we are. Every week we drive an hour to where he goes just to get him to high hopes. So we'll do everything in our power for him to be as successful as he possibly can be, and I do believe that he will be able to do all the things that he wants to do and hopefully more.

Speaker 1:

Yeah, yeah, absolutely. We all want what's best for our kids.

Speaker 2:

Yes.

Speaker 1:

And when we have challenges sent to us, we have to find a way around it, work on it and, hopefully, let them evolve to doing what they want to be doing.

Speaker 2:

Right, right, one thing that comes to mind that we never, ever thought that he would ever be able to do. He has learned to love playing baseball and we've been playing it in the backyard a little bit and he just absolutely loves it nice and I'm hopeful my fingers are crossed and hopeful that we can maybe get him into a little league of some kind, and that would be phenomenal, that would be really phenomenal yeah, that would be just simply awesome I don't know how he'll do, but I hope he's able to play one day because he seems to love it so much.

Speaker 1:

Yeah, and the biggest thing is the more he grows, the more he understands things, the more the therapy helps him. That's going to help that transition, so hopefully that he can do that.

Speaker 2:

Yeah, absolutely so that's one thing that I have hopes for is that he'll be able to be involved in things like that Sports, you know, where there are other kids where you have to do certain things, Right right, and I know it can be difficult, but I think he can do it. I hope he can.

Speaker 1:

Yeah, me too. That would be just so great. So is there anything that we've missed that you would like to just put out there?

Speaker 2:

Goodness, I can't. You've really, really asked all the good questions. He's just doing, you know, with therapy and everything he's just doing, phenomenal. You may have seen this on a t-shirt. I don't know if you have or not, but it's true. Regulation before expectations are always, always first. They cannot focus, they cannot move along in their day and do it well without being regulated first. Children with autism have to be regulated.

Speaker 1:

That's a very good thing to know. So now you're standing in front of a group of people. They just found out they've got an autistic child. They're just learning about autism. They know a little bit about it, but not a whole lot. What are you telling them?

Speaker 2:

Oh boy, okay, it's not that it's not difficult, but you just learn a new way of life. You learn to navigate in a different way. The way that you saw your child's life going or your life going, is you're going down a different path. You're not going down the path that maybe you saw for yourself or you saw for your child. It's just a different pathway to get to. If it's a to to for them to be the most successful human, because that's ultimately what you're trying to do, if, if it's your child is to teach them, to get them to this point in life where they can take care of themselves and they can be successful. So it might just be a different path and not the path that you sought, but it's definitely doable. And seek support, because you'll definitely need that support and therapy is a must.

Speaker 1:

Yeah, you know a question just popped in my mind that I don't think I asked A lot of autistic people. They have a issue with touch. They don't like to be touched, they don't like to be hugged, they don't like to hug.

Speaker 2:

But he would not even sit in our laps and snuggle or he wouldn't lay down with us to snuggle like, lay on the couch with us.

Speaker 1:

Right.

Speaker 2:

But yes, absolutely, that was a huge thing and we have had a huge turn of events in the last like three to six months, with that in particular.

Speaker 1:

And as a parent that has to be just really a very horrible feeling that your kid won't show any affection towards you.

Speaker 2:

Yes, yes, it was so difficult. Sometimes it's difficult because you just want that connection and them even just looking you in the eyes. You know, sometimes they won't even look at you in the eyes. He absolutely does that now, but he wasn't doing that a little over a year ago. So, yes, that connection, the touch, the love, the hugging. He didn't want to do any of that.

Speaker 1:

Now, was that with everybody? Yes, so even his brothers and sisters were affected.

Speaker 2:

Mm-mm. Now we still did. You know what I mean, and not that we forced him, but you know we did. You know, pick him up, hug him, kiss him. We did all those things, but he just was not open to them like he is now.

Speaker 1:

Yeah, yeah, well, that's a big positive change.

Speaker 2:

I think one thing that also you had asked me if we had missed anything, one thing that was also really difficult a year ago was bathing. A lot of autistic children getting wet cold. There's all these sensory things in the bathtub. If anybody out there is having that kind of trouble with therapy, that can and will get better. Well, most times does get better With therapy. That can and will get better. Well, most times does get better. But a little over a year ago it was almost impossible to get him in the bathtub and bathe him. We dreaded trying to bathe him but now he loves them. But he used to scream all the way through his baths.

Speaker 1:

Yes, I have heard that from several different people. Even as they age, sometimes if their clothes get wet, they better have another change real soon, because they just can't tolerate it they just cannot stand it.

Speaker 2:

It has to do with sensory stimulation, just it's just. Bathing was just one of the awfulest things and I and I didn't want to leave that out or forget it, because with therapy too and I in therapy I don't exactly understand how therapy helps with that, but I think it just helps with you learn how to help them regulate their bodies.

Speaker 1:

Yeah, it just comes down to whatever works and helps. Well, this has been a really great conversation and I really appreciate you coming on.

Speaker 2:

Yeah yeah, absolutely thank you, I appreciate you it. Yeah, yeah, absolutely Thank you, I appreciate you.

Speaker 1:

It's been my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.