Tony Mantor: Why Not Me ? - Hope McPheeters: The Challenges and Triumphs of an Autism Advocate Mom

Episode Date: September 20, 2023

Send us a text When we think about autism, we often forget that it's not just the individuals on the spectrum who need to adapt; it's also up to us, the neurotypicals, to learn how to interact with them. Join us for a profound discussion with Hope McPheeters, a mother of two kids on the autism spectrum. She navigates us through her personal journey, from the realization that her daughter was different, to the testing and diagnosis, and finally accepting that it was not her fault. Hear Hope's personal experience with the sea of misinformation and how she learned to focus on what was best for her kids. Hope pulls back the curtain on her experience running an ABA therapy clinic with her husband and her work as the Director of Community Engagement. She lays bare the challenges in providing aid to those who need it, the difficulties parents encounter when their children are just starting their autism journey, and the importance of finding resources and support for families. Additionally, Hope gives us an inside look at her nearly two-decade-long advocacy for her children. In the final leg of our conversation, we delve into the importance of communication and socialization for those on the autism spectrum. Hope shares the story of her daughter, Ella, who has built a community on YouTube, showcasing that this is not isolation, but a form of socialization. We talk about the notion that it's not just autistic people who need to learn how to interact with each other, but also neurotypical individuals need to learn how to interact with autistic people. This episode shines a light on Hope's journey of running a charity, helping those who have just discovered their child is autistic, and her wisdom to those listening. If you're a part of the autism community or just curious, don't miss out on this episode. It's a story that will inspire, offer solace, and most importantly, educate. 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) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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 your 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 Maitour. Welcome to Why Not Me the World. Today's guest has two children that are autistic. She started a charity for autism and has so much information to give us. Joining us is Hope McPeters.

Thanks for joining us, Hope. Well, I appreciate you having me. Oh, it's my pleasure. So I understand that you have two children that are autistic. If you would, give us a little information about them. Ella, she is 18 now and Lou, he's 14. When Ella was two, we noticed something different, and we moved to Columbia, Missouri because they were opening an autism center, the Thompson Center for Autism at the University of Missouri. Both my husband and I had gone to the University of Missouri. So we had talked to our pediatrician and he mentioned something about autism testing because she wasn't talking at age two, really wasn't imitating us, not doing too many, like doing a little

bit of echolabia, like echoing things, but really not conversation, no spontaneous conversation. And so they asked if we might want to go see the Thompson's. So a developmental pediatrician at the Thompson Center. And it was brand new at the time. It was like it opened in 2006 and this was when L.O. was too. So we moved. My husband was able to get a job because we and I was able to stay home with her if we moved to Columbia and then we were going to have her tested because we kind of suspected something

too and we started doing the research. And so she was diagnosed at the age of two at the Thompson Center. And then Luke, and we got really involved with them and started doing therapy. And then I got pregnant four years later. And the Thompson Center went ahead and put Luke into a sibling study because at that time, they were now seeing more families get double,

double triple diagnoses. So they were looking at a genetic component of autism because we were seeing so many. So that was, so Luke was diagnosed when he was 16 months at the Thompson Center. And then from there, I just, me just, my family immersed themselves in the autistic community, the autism world, maybe well. And we, we've been going ever since. So when Ella was diagnosed, diagnosed as autistic. Autism wasn't as predominant as it is today and people didn't know about it. So what was your approach and how did you feel when you got that diagnosis? What went through your mind at that point? Well, I mean, I will remember the date to the day. It was February 16th, 2006. She had just literally just turned two in December. And,

I just started this huge search of knowledge because I didn't really know anything about it. She was a girl. At the time, it was still kind of a boy predominant disorder. They were, autism speaks at that time was even like three out of four boys get autism. And so I was like, how in the world did my one out of four be a girl? like my girl

got diagnosed with autism and so I just didn't know a whole lot about it. So we worked really hard with the Tox Center. I went to all the parent trainings. You know, we were very fortunate that we jumped on that we just made the decision as a family

that moved to Columbia and be in a community that was studying. Okay, so Ella's diagnosed. You start doing your research about autism. I've spoken with many people that question themselves.

Did I do anything wrong? Could I change anything I'd done during the pregnancy? Did anything like that go through your mind at the time that you could have done something different? In the very beginning, I was like,

what could I have done differently? I don't understand. We didn't really have anything that we thought in our family, like in family history that looked like this. But then as I started to like get to know my kid, I mean, I was just like, this is just, this isn't my fault. I mean, you know, like I have a lot of, a lot of moms, you know,

do kind of go through that grieving process of like, what did I do? Why am, you know, why are we going through this? and I've just kind of always been a positive person so I just had to say you know what it is what it is and you know like now all I need to do is focus on how I can help my child get through. Absolutely. I ask this question because I think that other women that may be hearing this podcast

sometimes need to hear answers just like you gave. Yeah. I mean there's been just so much stuff And there still is. It's kind of inundated on, like, on the web, in the web and on social media. You see these, like, class action suits that are like, did you take Tylenol when you were pregnant and have autism or, you know, like, all these kind of certain things? There was a big push with, like, the vaccine, you know, like, I just, I just had to throw that all away. And then when I had my son, you know, I mean, it all came kind of came full circle. my son was diagnosed with autism earlier than Ella was diagnosed with autism.

And, I mean, I knew the signs right away. His pregnancy, I did everything different during his pregnancy. I was like, you know, stayed away from certain things that like people were, you know, insinuating, oh, this might be a cause of autism. You know, I did everything different. I didn't vaccinate him right off of that. because there's really, you know, no reason to vaccinate him with Hep B and in its first shot. But I don't believe that that's in cause, but I just said, I'm going to space them out and see if that makes a difference.

And it didn't make any difference. And, you know, Ella is my, you know, my higher functioning. I try to stay away from kind of sell the legal, but like a higher functioning. She was verbal. She just graduated from high school. She walked across that stage and got her diploma. You know, and my son is nonverbal still. He's 14. He has a lot of sensory issues and he communicates on the iPad.

So they're just both very different on the spectrum, but, you know, I wouldn't go back and change anything that I did. And sometimes I think God gave me Ella so I could be a better mom for Lou. So Luke's nonverbal, did. Ella go through that nonverbal stage and having two autism of children, what were the differences in them growing up that you saw? Well, I mean, Ella started talking. So she was nonverbal until she was about four and a half or five. We started ABA therapy and speech therapy. And we always knew Ella was smart. She was doing stuff. She was spelling at age two and a half. She would see, she would

see words on blues, you know, or like a cartoon. She was, you know, taught in spelling. And she, we had these bath tiles and she would spell those words on the floor. And so she was really, you know, like we knew she was, she was reading.

We knew she was, and then we figured language would come. So did language come the way that you was hoping that it would come? They did come. I mean, lots of therapy. We did lots of ABAs. speech therapy with her. And it was kind of amazing because

she did. She was one of those kids that went from, I have a video of her that she said, the first word she said was bubble. Because we were in therapy and we were lonely bubbles. And I'm in the video with her because I was always trying to be trained by the therapist

so I could just continue to help her at home. And so I held the bubble wand up to my mouth and I wouldn't blow it until she said bubble. So did you finally get her to say the word?

We had sat, I mean, there is times that we sat for a long time. And if she didn't say it, we would have to kind of give her up or we'd have to make her sign it or we would she, we used like pecks where she would like point to a picture if that's what she wanted.

And so then the first time she said it, she said bubble. I just blew the heck out of the bubble. And then later on we have a video of her. We continued with therapy. One time, same thing, like we had been swimming at the pool and I'd walked her down home because we had a neighbor had a pool and I walked her down home and the stroller. And I strolled her in and she literally, this was after the bubble incident,

but she literally was like, more pool, please. And I had to honor it. I had to turn that stroller around and go back. to the wall because I just had to honor her voice and so that was in them

and then shoot and then the the third video that we have her talking she's like mom blow me bubbles please so her language went from like words

to sentences in a matter of months you know and then we just realized how smart she was and artistic and she's she's a whiz at math

and so those were kind of, you know, the things that we focused on with her. Oh, that's great that she turned around and you saw such a change. So what was the difference between her and Luke? Now, with Luke, we heard a lot of babble from Luke, which we didn't hear from Ella. So it was interesting. And he went about, let's see, until kindergarten, he went and he used a hex system. He did a picture system where he would communicate

with picking pictures out and showing where he wanted and why not. He would do pretty good about that, and that's when we got him an iPad. And then we realized he could read because he could read site words on the iPad. And so now he uses a communication device for output. So his communication now is primarily iPad. Does he verbalize at all? Yeah, he can communicate pretty well. at dirt iPad. He does, he does, he is able to verbalize some of it. Like, he is able,

if he touches, for example, like, if he touches, like, chicken nuggets. So, like, I want chicken nuggets. He can, he can actually do the whole sentence. It's, it's an icon, and it's, like, and words, sight words. Like, he can say, I want chicken nuggets. And so we know he's reading. We know he's recognizing those words. And then, he can output, like he would say like negative. You can repeat some words after he's outputted it. Wow. Okay. That's pretty interesting. So now what do you see for Ella's future?

Well, she has joined. So that's kind of my mission now. As my teens, as my kids at Brown, we started very early on with advocating for early intervention. And, you know, and throughout this process, now we're advocating for more services for teens and adults because we have found that in Lachismwell, the little guys get a lot of services. So it's around 21 that most age out for some of these services. Is that correct?

Well, not not all. Like a lot of her may down at 18 of school, Ella aged out at 18 because she was not in my son. So my son, he's in a self-contained classroom and in more essential skills classroom. and so he will have the right to education until 21. Ella graduated, but she is going into the transition program for one year, which is employment skills,

and she'll be working as an intern at Embassy Suites, and they're teaching her all of the ropes of all the jobs of the hotel. And she does that with seven under kids that are on the autism spectrum, that she's been with in school. So the big issue is finding programs that can help them along. Is that tough to find some of these programs? There's not a lot of programs out there like that. And then after that, you know, it's kind of, it's up in the air.

So that's my mission now. I have since left the classroom. I was a French teacher until this year. And now I've left the classroom and I'm looking for autism support now. behavioral services, and I'm working on getting more programs for teenagers. Now, before Autism Support Now, you actually had a charity of your own. Is that correct? I did. That's 13, 12 years ago, 12 years ago, we started LSO for autism and we're still running that. We did that in 2006. No, we did that in 2000. We started in 2007, but we really

grew it. And we were able to establish the nonprofit in 2011. And we really advocated because between the years of 2006 and 2000, probably about that 10 and 2010, insurance didn't cover a lot of therapies for autism. Yeah. So we did that. So because we could help it with the cost, we helped parents with the cost of therapies because a lot of times if the insurance wasn't covering it, people could not afford it. So we raised money for area, local families. We also raised advocacy for them. And then we helped fight for the bill, the mandate. Missouri has a mandate where now insurances have to cover autism. Autism therapies. So that's really good that you was on the front end of this so that you could help others and really build more awareness for

autism. We stayed really close with the Thompson Center. So, you know, they were the groundwork with it with the legislation and with Governor Nixon. But we help, as parents, we helped tell them what we needed. Like, we needed, yeah. So we were a group of parents that went down to Jefferson, said, Ian talked to the legislation and said, we need speech. We need OT.

we need to ABA, these are the things that we need. That's one thing I hear from everybody I'd speak with is that there is a need for the government to get involved and help autistic families deal with the things that they have to deal with with insurances and just varied things for helping their children. So do you ever see that coming on a national level? Oh, I wish it did.

We were hoping that we were, I mean, enough states are doing it. I mean, but it would be really nice to be a federal mandate. We write letters all the time for, you know, certain funding through, you know, Medicaid and whatnot. So we'd try, but let me take a special someone to get a federal one done. So tell me a little bit about autism support now that you're working on and what you're doing. Autism support now is an ABA behavioral therapy clinic. But it actually, my husband and I actually co-founded. under our charity.

And now it's not a, it's not a nonprofit, but we have nine clinics across the state of Missouri. I just want to help as many people as possible. Like, we're as many kids and teens as possible. And so I have taken on the role of director of community engagement. And so I'm trained and also a parent, kind of a parent advocate because I do. all the intake for parents and so on the human resources. I just talked to a parent today that lives in St. Louis and I used to live in St. Louis and her son was diagnosed and we're going to get him into one of our clinics, but I was telling her about all the resources that I used to use in

St. Louis. And she was just like, thank you so much. She's like, you know, this is the best conversation I've had since his diagnosis because I just don't know what I'm doing. It's really tough for those just starting out and finding that their sons or daughters are autistic, I'm sure. It's a marathon. It's not a spread. You know, like, you don't have to know everything at once. And, you know, like, she's, I said, call me anytime with a question. And I will do my best to answer it because I've been doing this for, I've been, I've been advocating for my kids for, you know, 16 years. I love it's diagnosed it too. So I just, so I'm trying to, I'm trying to incorporate. that into the job.

What's the toughest part of the job? I know there's a lot of tough parts, but you're trying to help people, and what's the number one thing that you see on the list? There's always a wait list. So many people want, I mean, like, so many people want the help. And it's just we can't, we can't provide the health fast enough. And I mean, I, my heart stinks when I'm like, we have like a two to four months. month wait list maybe longer.

Wow. My heart stinks for these parents. And that's a hurdle probably across the board with ABA, with speech, with OT, with developmental pediatricians, even with diagnoses. There are parents out there waiting for a diagnosis and they can't be seen in a clinic for six to 12 words. And without a diagnosis, you just can't get services. There's just not a lot of resource out there.

So what do you do in that case? I've been trying to give our parents that we have resources that I didn't have at the time that had been developed so well in the last 16 years. You know, like, because parents like us are the ones fighting for it. So, you know, I look for the online resources. We, you know, like, there's tool kits out there. I'm like, parents, you just need to get on every wait list you can. And it doesn't matter if it's ours or, you know, neighboring.

I try to refer people to places that, you know, maybe they can get in faster. It's just, I know the parents want to help now. And we just, you know, it breaks my heart sometimes and we just can't provide it. And that's really sad because so many people need to help. And there's so many people out there that really want to help. And the people just don't know what to do. it's tough for everybody. There's a lot of hard work and people doing it,

but it's just really hard to find sometimes. And a lot of, you know, a lot of states, more rural areas, they're even in, you know, kind of worse conditions because, you know, there's just not enough resources in small towns, especially around our area.

Like, we're in Kansas City. We're in a pretty, you know, big city. And so we have some, we have lots of area resources. but we put a clinic in flat city, which is a small, you know, small town, and there's just, it's limited. And, you know, that's, those are the longer waitless.

Okay, so now let's switch to the school systems. How has that changed and how did it work for you with Ella and your son? I think everybody's experience is different. I mean, my kiddos had a great school experience. They were both on individualized education, plans. They had a team of people that were and still are, you know, I call them Team Luke and Team Ella. I, you know, I was pretty adamant about what I wanted into their IAPs, into their individualized education plans. And so I was, I was kind of that mom. I hear from parents that

some parents struggle just depending on the school district or what the needs are. Because Sometimes that needs can't be mad of the school. And that's a problem. You know, like, that's a problem. And sometimes schools aren't staffed or equipped enough for some wills of autism. So sometimes they have to go for some outside help. Did your kids have any issues like in high school, like some do? How was their experience there?

High school, it's pretty good. But to be fair, I was a high school teacher at the school. I love it. I mean, there are a lot of parents. get that inside kind of connection. I was very, but we did have a few incidences, but I tried to use those, those kind of incidents as more of an education.

We deal with some anxiety, and that was really like, kind of the heart of the behaviors at school. Like, she would get anxious. And I don't know if kids would bully her, but they didn't understand her behavior. So, you know, I mean, They would just kind of not, you know, not get at her space and like, and, and, and they

kind of back off. And whereas I, and she wasn't meaning to be that way. She's, you know, they, you know, like, they thought she was kind of rude at one point, like a couple of kids thought she was rude. And I was like, you know, and I kind of used that as an educational, like, platform to be like, well, that's just kind of because she's a very abrupt person. Like, she'll just say what she thinks. because there's no filter with autism sometimes.

So I kind of educated them on that. She got since she's autistic. And then, you know, like most of the kids that at least I saw her interact with were really nice. But I know what goes on. So how did you find the school system for Luke? Luke is a little bit different. He kind of is protected in his like essential skills, self-contained classroom. We don't worry about him going to the high school.

And he had a fabulous middle school experience, but it was because of the teacher. And so we were really blessed. And so, you know, like, everybody's, I know everybody's experience is different. And I know there's probably a lot of people out there listening that are like, we did not have that experience, you know. And I feel for them because I know that I have been very lucky. Now, I've talked with some parents that tell me that their kids tend to go into what I like to call their comfort zone, and that could be their room or wherever they go to just be by themselves.

Do you have that issue at all? If Ella could be by herself most of the time, she probably would be perfectly happy. But I don't let her. Even as it's interacting with me or dad or, you know, like we go on a walk or whatever. And so, I mean, basically, especially now when she's like, an adult. She is an adult. And so, you know, social activities for her are, you know, we've sought them out. We are in a program at KU Med that's called Girls Night Out. And it's specifically for girls on the autism sector and they do community events and they do, and she

does classes with them. And so, like, they just went to the zoo last week and, you know, spent You know, about 15 of them spent the whole day at the Kansas City Zoo together and they were socializing and they have people that provide, you know, provide some instruction or some, you know, social skills with them. Now, we've evolved into a world of computers. So that's a huge thing now because everybody communicates and socializes on that. Has Ella done a lot in computers? Do you see that helping her out as well? She loves computers. She's a whiz. She likes to make videos.

She's actually like a YouTuber. I don't understand it at all. I can relate to that. They're very into their videos. And she creates videos on Go anime or beyond and she puts them up on YouTube. And you know what? It's actually been really great. She has a whole community on YouTube.

Awesome. They interact. They interact and comment. And to me, that's not isolating. That's actually communicating with people. So find that strength. I mean, because I was like, okay, well, as long as you're safe online, you know, like I can't keep an eye on it, you know, because online is kind of scary for our kiddos

because they're trusting. But I kind of keep an eye on it. But I realized that she was socializing. And she has to post to Instagram and people comment. And, you know, like, that's socialization. That's not isolation, you know. So nowadays, and especially since COVID, I know, like, we were all online, you know. So really, like, that is kind of her, you know, like, kind of a way to, to, for me to not, to not think that she's isolating.

Yeah, that's just so great. You know, this has been just so great because we've talked about so many different subjects. and the school system and everything. And it's just too bad that we can't actually get more integration and teach more understanding in schools to those that aren't autistic to understand those that are. Yeah, and I love that because I think there was like an old saying, we teach our kids to interact with typical kids.

But why are we teaching a typical kids how to interact with our kids. So true. You know, we have to blend our kids into that world, but, you know, it would be nice to see more change that more inclusion and more, you know, more typical people, you know, coming into our world. Yes, absolutely. I've got to say that this has been a tremendous conversation.

The biggest thing that I've really enjoyed about talking to you is the fact that you have so much knowledge because you're part of not only the autistic community and having two children that are autistic, but you also have a charity and you help others as well. So I really want to take and bring that into perspective and ending this and telling about the challenges and the things that you tell people when they first, find out they have a child as autistic? Yeah, it's pretty overwhelming. In fact, this week I've talked to several moms.

Again, just several moms that just got diagnosis, like two or three-year-old kiddos. And what I do tell them is I do say, I say the marathon is not a sprint. You do not have to know everything or do everything now. you can, you know, like decide on what you would, if you think ABA is going to be something that you want, get on some wait lists, look into speech, look into O.T.

You know, and then I do send, I have several resources that I send them. And then I just say, find a support group. There's a bunch of support groups online, like on Facebook, on social media. honestly, I joined a Kansas City Autism Spot Facebook group when in 2011. That's what I got on Facebook. And they were already born me then and I got on there. I don't know, maybe not 2001, but a couple years after that. And I interacted with other moms and I was like talking about.

We just shared all of our experiences. And that for me, that has been why I have actually like, kept going. Like, my normal became the autism community. Oh, just great information. So in ending this, I think I have one more question. Do you have any outgoing words of wisdom for all the people that are listening today? Oh, just don't get about bomb around. I mean, just, you know, like, it is a totally different world, you know, find their strength, find their, you know, be their voice. If they don't have long. You know, at times do get tough. It's really hard. I know. But, you know, I just, we just made a pack that we would never give up on our kids and we would always continue to make

sure that they are happy and healthy. And they are happy and healthy. You know, like, I mean, they just, you know, they just need a little extra support and, you know, you'll find it out there. I mean, you just have to look for it. Absolutely. And I want to thank you again for coming on because you've given so much solid, good information for people to listen to. And I feel like we only touched on some of the subjects that you could really help people on. So thanks again for coming on. Well, again, thank you for having me.

I'm forward to listening and it's been really fun. Yes. I've truly enjoyed it. It was my pleasure. and 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 tonymentor.com, 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.