Posted on January 30, 2023
Cyndi O’Toole and Candace Wiley spread a positive impact and have dedicated their lives to special education and child psychology. After each working in the U.S. education system and the public sector, they decided to go on their own to provide greater service and resources to parents of children dealing with neurodivergence. In this episode, we discuss their journey and what it means to deal with conditions such as ADHD and autism. We focus on some of the processes and glimmers of hope and fairy dust that Cyndi and Candace provide to the families they work with. Tune in to this episode now!
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Building A Caring Autism Resource To Deal With Neurodivergence With Cyndi O’Toole And Candace Wiley
This episode is part of a local series focused on Wimberley Valley organizations, brought to you by Ozona Bank. Our guests are Cyndi O’Toole and Candace Wiley with The Autism Resource Center. Cyndi is a Special Educator and Board Certified Behavior Analyst with twenty years of working in public education, adult education, and the private sector, specializing in parent collaboration and support, and working with children who have autism.
Candace is a Licensed Specialist in School Psychology and Board Certified Behavior Analyst with sixteen years of working in public education and the private sector. Candace specializes in the evaluation, parent collaboration and support, understanding the special education process, and working with children and young adults with neurodivergence. Thank you so much for joining us, ladies.
Thank you for having us.
We’re excited to be here.
There’s a lot to dive into, but we’re going to start off by learning a little bit about your background. How did you come to this place where you are passionate about and putting your life towards working with adults and children?
I stumbled into it. I think I’ve always been an educator and I started out in special education as a teacher and kept going back to school. The more I learned, the more I wanted to learn. I was an educator in the classroom and then decided I wanted to work on assessments. It kept going and I fell into the world of working with kids who have autism and other developmental disabilities. I took a leap of faith a couple of years ago. I went into the private sector and I loved it. I also love public school. Being in both situations, Candace and I worked together for a while and we found some holes that we wanted to help fill. That’s what we’re trying to do right now.
My story is similar. My brother had neurodivergence growing up. I saw how he struggled through school. When I went to undergrad, I knew that I wanted to be working with kids and families. I eventually stumbled into the school psychology world. Once I was in that area, I kept finding myself drawn to behavior and going, “I can do all kinds of things with this and I love this.”
I’m working with the school district. I got an opportunity to get my BCBA and go through all the certification processes for it. A few years later, I took that leap of faith also, moving into the private sector and found this whole world of families that are going through this process and have so many questions. It’s a very confusing process. It’s not clear what resources are out there. At a certain point, Cyndi and I saw there were holes in the system and we went, “We can bridge that gap. We can help with some of these things to help those families.”
What are some of those gaps that you saw that you needed to fill and that you’re working on filling now?
I’ll talk about it from the private sector and I’ll let you talk about it from public schools. When a kiddo or a family suspects that there is some neurodivergence going on with their child or their development looks a little bit different, they go to their doctor or they reach out to somebody for help. They get some advice and some help in that realm. A lot of times, doctors are not well-versed in neurodivergence. A lot of times, they say, “Let’s wait,” or “You should go here.” They give them a few tips and tricks on where to go. Once an individual needs an assessment and needs to figure out what is going on, there’s not a whole lot of support. There’s not a whole lot of direction on who you should go to, who’s qualified to do evaluations, and what you should look for, and also finding somebody who’s ethical to do that.
Once you have an evaluation report that says, “Yes, indeed, you do meet the characteristics for this or for that,” there’s nowhere for these parents to go get support and resources or to know where they should funnel their resources and where they should spend their time. “What’s the most important thing I should look at because I don’t have all of the money in the world or all of the time in the world?”
We want to be that resource for these individuals and say, “Here’s where you should go. Here’s where I think you should spend your resources now. Maybe we’re going to tweak that a little bit down the road and here are some ethical service providers that we can refer you to or let us stand next to you. Let us be your voice of reason.” When you’re having those conversations about your own child, you’re not thinking logically. You’re thinking emotionally. If we can be there to think logically for these families and then call through the information for them and give them a little bit at a time, then they can navigate this world a little bit easier. It’ll be a little bit less scary for them. I’ll let you talk about public schools.
From the school perspective, public schools’ resources are limited. Unfortunately, with the way public schools are run, there isn’t enough funding there to give our neurodivergent students the supports that they need. I say this as somebody that has worked and currently works in public schools. They do their best with what they have. At the same time, if a family is receiving private services, there are also these roadblocks that they run into trying to get the private service providers to be able to collaborate with the public schools.
There are school districts that have board policies that say that private providers cannot come in and provide services within the schools because it’s a slippery slope when they allow that to happen. Lawyers get involved. They say, “My child needs this, so now the school should pay for it.” I understand where they’re coming from, but our goal is to approach it from that perspective of, “We understand where you’re at as a school. We know that you’re trying your best. Here are additional ways we can support you that still fit within the model that the school has set up to bridge that gap as well and to be able to collaborate a little more cohesively.”
I know a lot of service providers have been in meetings with the schools. Sometimes they feel pushback from the schools. Sometimes the school feels a lot of pushback from them or they say, “They’re asking us to do all these things that are not realistic in the public setting.” With Cyndi and I having that background and that knowledge of being in the schools and knowing what that looks like, we can offer real worlds that can effectively meet that child’s needs. We bridge the communication between that private service provider and the public school staff that they’re working with and come out with a collaborative process that has been otherwise potentially difficult to establish.
We know so much more about autism and neurodivergence than we used to, but it’s still something that, unless you are having to live with it, we don’t know that much. If you are a young parent and you’re now learning about your child, you may not know what to look for. Talk to us a little bit about, first of all, what neuro divergence is because a lot of people don’t know what that is. What types of characteristics or symptoms that you are looking for or that the school is looking for that would say, “Maybe I do need some outside help. Maybe I can’t handle this on my own as a parent?”
Neurodivergence is going to be a pretty broad term. It basically encompasses when a student’s neurological pathways don’t necessarily fall in line with what they would expect from the general population. This could be our kids that have ADHD that struggle with attention and focus, but they have these brilliant minds and they’re thinking of all these things all the time. This could be our kids that are on the autism spectrum who may struggle with communication aspects, both verbal and nonverbal.Your kids may struggle with attention and focus due to ADHD, but they still have brilliant minds. Click To Tweet
It could be that they struggle with social skills with others. They don’t pick up on some of those more subtle norms that we have in place. Those unspoken rules in society don’t occur naturally to them. Those are just two examples, but there’s a broad population of neurodivergent kids out there. There are kids with sensory sensitivities. Help me out here, Cyndi. What am I missing?
There’s a whole spectrum of what we’re looking at. Even within those that you identified, there’s a spectrum within the autism spectrum, but also within sensory processing disorder and ADHD. Everything looks different for everybody. There’s no easy way to define what it looks like. You said it in a really nice way how those neural pathways are firing differently and the world is different.
We have to figure out how your brain works so that we can support that brain. It’s not always on the person. It’s on the world around them to make sense of how that brain is working. We make adjustments within that world. If you have a child and you are watching them develop, some of the things that are good to do are to be familiar with what development should look like or what we would expect it to look like.Figuring out how the brain works is not always about the person. It’s also the world around them. Click To Tweet
That’s important for not only us as practitioners but also as families. Should I expect them to be able to speak in full sentences by two years old? No. That’s not something you should expect, but should they be communicating their wants and needs with you by two years old effectively? Yes. A lot of times, one of the first things that we see is real true frustration within communication and an inability to truly functionally communicate. Meaning that I can get what I need to get across to you and I can get my needs met.
Some other things that we may see difficulty regulating out in public or even at home are those kids who have epic meltdowns all the time, and you don’t know what to do to help that child. That’s not something that we would typically expect. When you have a kiddo who has something going on, they’re neurodivergent, you often see those big and long meltdowns that nobody knows what to do to help them.
It’s hard to be able to bring them back to the center when they hit that point. Working with as many families as we have, sometimes when it’s an only child, they don’t realize the lengths that they go to help accommodate their child. That’s why sometimes it’s also important to make sure that you’re having those social opportunities. You’re able to observe them around other kids of similar age to see if there are differences there and what those differences look like.
That’s something I’ve run into in the past when I had to have a tough conversation with a parent. The parent said, “We do all these things and they’re fine.” I said, “I totally understand and I commend you for doing all these things with your child and going above and beyond but realistically, parenting shouldn’t be that hard.”
You can’t do it for the rest of your child’s life.
Not everybody is going to be able to do that. Eventually, your child does have to go either to school or to different activities where you’re not there holding their hand.
They have to have their own relationships.
That’s difficult. The parent broke down and cried at that point. It’s that a-ha moment of, “It’s not supposed to be this hard.” It’s having those opportunities to watch your child around others of similar age, being able to look at what the other kids are doing versus what my child is doing, and looking at it from that perspective. Sometimes we have kids that are a little quirky for lack of a better term.
One of the things that I think is difficult is the level of sensitivity. You have disciplinary issues or at-home issues that may be making things look like there’s a problem or making things look like there’s not a neurodivergence. It’s just whatever is happening in the home. Are there pieces of assessment that help to parse that out?
There can be.
Was it a long-term observation?
Part of our evaluation process when we’re doing our diagnostic evaluations is we gather a lot of background information from families. We ask them, “What does behavior typically look like in your home? What are your top concerns? How do you approach the discipline within your home?” We take a look at that. We also tend to do our evaluations in the home so we can get an idea of what that setting looks like and be connected in that way.
Sometimes there are environmental factors that do impact behavior but not necessarily the development as a whole. I’ll give an example of a parent who is on the spectrum as well. Engaging in imaginative play may not come naturally to them. When our kids are young, we need to model play actions because plays are intrinsic. You don’t necessarily always know exactly what to do, especially those higher-level play skills.
If you have a parent that has never engaged in that type of activity, it’s hard for them to model that for their child. It may look as though the child doesn’t know how to engage in those activities when realistically, they’ve never been taught how to do it. That’s something we try to do a good job of teasing out all those different components to say, “Is this truly a deficit for your child or is this just a lack of exposure? Is this a factor of environmental conditions that are going on?” We’re trying to tease through all of those things. A big part also of what we do is the parent training aspects. I’ll let you talk about that.
That’s what I was going to bring up too. Even if we have a family where it’s all environmental and not necessarily autism or neurodivergence, that’s something we can do to help out. We are specifically trained to analyze the environment around behavior and make changes to the environment so that we see a different type of behavior.
Regardless of the cause, we can go in and analyze what is going on before the behavior, what’s going on after the behavior, take a lot of data and come back and say, “Here’s what we’re seeing and you’re causing this behavior to happen more and more. Let’s go tweak it a little bit.” Our goal is not to squash the spirit of a child. That’s not who we are. That’s not what we’re about. We both have children and I would never want somebody to do that to my own children. Both of us come at this from that perspective. If we can make some changes in the environment to make things a little bit easier for everybody, not just the kiddo but for the parents, then let’s do that. It’s always, “What is the easiest thing that we can change right here, right now? Let’s do it.”
With the parent training that we do offer, it doesn’t necessarily have to be, “My kid has autism. Can you come in and help me?” It can be, “I’m struggling with this and I’m not sure what to do.” For example, my own family. Over the winter break, we were struggling to get things done and to get along. I think we’d been in the house and we had a lot of people over. We’ve had a lot of emotional things happen to us. I think we were all on edge. My husband and I sat down and said, “Let’s figure out some things that we can tweak within our own environment to make things better.” It has been a beautiful two weeks.
What did you tweak?
We are making lists for our kids, “Here are the expectations. Here’s what you need to do before you can go play.” We were on Christmas break for three weeks. That’s a long time so there was no structure. We put some structure in place. We apologized to our kids and said, “We’re sorry. We know we’ve been yelling. You guys have been yelling at us and we’ve been yelling at you. We are going to change our tone of voice with you.”
We changed how we were communicating with them, but we also realized that they are people and we apologized to them. We put some behavioral contingencies in place. My eleven-year-old is new to the phone world, so he’s highly motivated with his phone. I basically said because he’s been snapping, “If you snap at me, I’m going to take your phone away for an hour. If you snap at me within that hour, you lose it for another hour.”
He hasn’t snapped at me in two weeks. I had to find something that was motivating for him. We talked about it and we talked about how it makes me feel. We talked about how it makes him feel when we snap at him. We pointed out, “When you snap, we snap and it’s this horrible thing.” He understood. We made those changes and that’s what we do with the family. If there is neurodivergence involved, we do it that way. What can we tweak? Both of my kids received some therapy when they were younger. When COVID hit, one of my children was in therapy and I had to become their therapist. This is what I do for a living. It would’ve been super easy for me to do it, but I didn’t want to.
Not to your own child. It is never easy. They will not talk to you in the same way.
We don’t want our families to feel that way. There will be some things that families are expected to do and expected to change, but it’s tweaks like visuals, lists, and setting up expectations.
Modeling communication skills.
It’s not being a therapist. That’s something that families and other therapists need to understand. It’s that when you’re the mom, you can’t also be the therapist. We have a lot of experience with this and I still couldn’t do it.
There are so many different emotions involved, but I love that you said that you apologized to your kids. There was a moment during our Christmas break when I had to apologize for a couple of moments. I find it important to recognize that and have them recognize that I’m a human and I see where I made my mistake so that you can do the same thing. Part of it for us was I said, “I am sorry that I snapped at you. I recognize that I could have chosen a different tone. It happened because, at the moment, these were the things that were happening ahead. I hope that I’ll behave differently next time, but I just wanted you to know that I’m sorry and I recognize that was hurtful.”
I told him he couldn’t have Jell-O in the store. I said it in “Stop asking” kind of way. I only bring that up to say that as parents, we think that we need to quickly move on from our own behavior. We think that we need to be in a power position and not own the mistakes that we make, especially all the time. Especially when our kids get into adolescence and young teens and then teenagers, we’re teaching them how to be adults.
We’re teaching them perspective-taking or taking a step back to see it from my perspective. I do this with my kids all the time too. One of my kids is neurodivergent and I have to stop sometimes when I’m already on edge. There are behaviors that are coming out that go with that for my child and have to say, “I don’t have the capacity right now. I need you to rein this in. Here’s where I’m at. I can tell you’re already on edge too. We both are. Let’s both take a deep breath. Let’s practice our skills quickly.”
You’re not only modeling for them that appropriate communication to say, “Here’s where I’m at, and here’s where my emotions are.” You’re also modeling and recognizing other people’s perspectives, and stopping and assessing what’s going on in the big picture. Also, how to move through that and how to use those skills like taking a deep breath, counting to ten, thinking of some positive things, and all those different things to work on changing your perspective at that point. It’s fantastic that so many skills are wrapped into one where sometimes our little guys are not able to take that perspective of other people. It’s like, “I am the center of my universe. Things are not going right and I’m having a hard time understanding why.”
I think that’s a good point that it’s easy for adults to recognize that little people think that they are the center of the universe. In actuality, we all do that all the time. We teach ourselves on a regular basis and remind ourselves that they may get upset because the phone is the center of their universe right now with them, but what is the center of ours? I get upset when the kids use my work computer.
Realizing that whether your child is neurodivergent or not or you are or not, we all have these idiosyncrasies that narrow our perception of the world. We all get to that place at different points in time and know how to deal with each individual person and those systems. Do you go into the homes? What’s the process look like once you have an assessment?
Assessment isn’t always required necessarily. As Cyndi mentioned, if you’re looking more for just some support with behaviors in the home. We can do an interview with parents and do that process and then go in. Assessments are more required when we’re looking for a medical diagnosis. Typically also when you’re looking for insurance to help cover the cost of services. That’s where that tends to come into play.
With the parent training, it depends on what we need to work on, to be honest. I currently work with a family where I do go in the home because I can see behaviors a little bit better, but I’m also working with their child. That’s not just parent training and parent support. I’m also working with their child. I will go to their home.
The majority of the parents that I have worked with, I’ve worked with them virtually. What it looks like is we sit down and we figure out when this behavior occurs and what are the circumstances around it. I then want you to set up your computer to where they can’t tell that your computer is turned on. I want you to record the screen so I can see what’s happening. A lot of times, they’ll record it for me and send it to me. I’ll look through it and then we watch it together. I’ll make comments on it while we’re going through the video.
Other times, what I’ve done is have them set it up in their home the same way when their kids are home. Each parent gets an earbud in one ear. I watch them where the kids can’t see me and coach them through dinner time. “Here’s what we’re going to work on. We talk about it ahead of time,” and then we set up the coaching. I talk to them through their earbuds while they’re with their kiddos and they start making changes, and I can coach them through it.
Usually, I record that, and the next meeting, we sit down and we watch the recording again and make sure that we don’t have questions or sometimes we catch something a little bit different. Also, give them feedback on things that they’re doing well. We all like to have that, “You did this well. I’m so proud of you,” and that feedback. It depends but for the most part, we’re not going to go to their homes because when we do, all of the kids act perfectly.
We bring fairy dust with us where we go. Everybody right now is going, “Please come over tonight.” I get that. I walked into the classroom and the kids did stuff they had never done. I was like, “I’m sorry, guys. It’s my fairy dust. It happens.” Her presence alone is enough to disturb the environment. It’s not a natural setting at that point. If there are opportunities to be able to do it covertly like that, you get more results. You see the parent confidence go up as well because there wasn’t somebody standing next to them telling them what to do. Even if they’re in an ear and they’re still hearing it, they’re the ones doing it at that point. It empowers the family a little bit more.
We have worked on behaviors associated with leaving the house. We’ve worked on behaviors associated with doing homework or anything we don’t necessarily want to do like waking up behaviors, visits to the store, and building language. We’ve worked on a lot of steps. Those are the things that we’ve done and we’ve done it all virtually.
You work with the parents. What age ranges of children typically?
I think a year and a half was the youngest up to probably college age.
I was going to say that a lot of adults may not have had any help or support to deal with the emotional regulation that we were talking about. Most adults don’t know to say, “I’m sorry,” whether they’re neurodivergent or not. Also, the needs change. Emotional needs change and the things that you’re dealing with change, and there are more crisis that comes up.
The 22-year-old that I was working with was all because of the pandemic. He got used to being in his home and didn’t ever want to leave, but he needed to go do something. He needed to go back to school because he was of school age when school back opened back up, and he would not go back to school. There were significantly challenging and aggressive behaviors that occurred. We got him back in school. We got him to where he was going to work. We realized that he understood much more than what we realized initially.
He participated in a test for his seizures. It’s completely unexpected. The neurologists were able to pinpoint seizures because of him. I’m working with his family now to get him out in the workforce like a true job out in the workforce. He’s never done it before. His mom didn’t think that he would ever be able to, but what we learned from that experience was that as kiddos who are neurodivergent, especially those who are pretty significantly impacted, there are not many resources out there for them or their parents either.
The schools will provide services up through 21, I believe. I think they can even turn 22 and finish out the academic year. I think that’s what I learned. Essentially, once they turn 22, school services are no longer there and there’s no more 18-plus programming. Parents have to figure out what to do. The workforce that’s out there and the types of home situations and placements you can have for them are expensive.
They are mostly for extreme cases.
There are places up in Georgetown. There’s the Brookwood Institute. They have a phenomenal program where they work with neurodivergent adults that can’t live independently and they create jobs for them, but you also pay for them to live there. It’s astronomical how much it is. It’s trying to find more resources and be that source for families to go, “Have you tried this?” One of our former coworkers and friends works for the University of Texas now. She works with neurodivergent adults at the university and helps with programming for them as well. That’s a lovely resource that we like to put out there. I think it’s a well-kept secret around the University of Texas.
Do you have to be enrolled in the university?
I believe for that particular role, you do. However, she also is an LPC and does counseling services for students or for people that are not enrolled. She loves working with that adult population though. She understands and has a background in behavioral change where she can help them navigate adulthood to a degree. It’s one of the resources we’ve found along the way that’s been filling in some of those gaps that we see.
One thing that I think people don’t necessarily think about is when you have a child who has a neurodiverse profile, they’re going to become an adult. What is the plan? What does that look like for you? What does it look like for your family? It’s not just your child, but what happens when you’re no longer around? There are so many things that these families have to think about. There are two waiver programs through the state of Texas that are four kids with developmental disabilities or autism. The waitlists are so long.
When I get a two-year-old, I tell the parents to put those kids on the wait list right then and there. They can’t utilize it until they’re in their twenties, but it’s to support young adulthood. I did a research study with a lot of families from across the state of Texas. Maybe 5% of those families knew about those waitlists and had not put their kids on those waitlists.
By the time they need it, it’s too late. As I was mentioning earlier, we’re trying to realize as often as possible that when we’re raising kids, we’re raising adults. It’s hard enough to remind yourself of that and do that when your kids have what is assumed to be the right skills. It’s even more important when there is a divergence of any sort. Every child has their own weaknesses. If we fill those gaps for them instead of teaching them how to overcome them, then they’re going to rely on you forever. I have a stepsister who was mentally disabled and has epilepsy. She lived with her grandmother her whole life because her parents or my dad didn’t have the skills or desire to do what was necessary to take care of her.
The grandmother was amazing. We all praised her, but she did absolutely everything for her to the point where she didn’t even know how to change out the toilet roll when she needed it. She’d say, “Grandma.” Grandma would say, “Sure, honey.” She didn’t know how to make a peanut butter and jelly sandwich. When grandma passed, nobody knew what to do with poor Vicky and neither did Vicky. Every family member that she was passed to at that point expected her to be a 45-year-old woman, not the 8-year-old she was trained to be. Even now that I have an 8-year-old son, I’m thinking probably a 5 or 6-year-old that she was trained to be.
Doing whatever you can as a parent to learn your own skills to be able to give your child the most skills they can have to be in the world to be an independent adult. Even for me, it’s so easy to say that my child has this sensitivity, so I’m not going to let them come across that thing or whatever it might be, w. When we cover that up or we tried to do more and not have them figure out their own skill, it’s such a detriment.
It is. They need to be able to recognize that there’s a need personally there. They need to recognize that it’s a loud environment in that I’m not comfortable.
Communicate it clearly instead of covering their ears.
Also, to know what to ask for if it’s not something they can solve on their own. “Can I raise my hand and ask the teacher if the assembly is too loud? Can I go to the back of the room? Can I have a pair of headphones to put on?” I have a student I’ve been working with who if anybody heated up their lunch in the vicinity of my office, the smell bothers them. They comment on it every time.
I have learned to coach the student to ask me for a piece of gum. I carry mint gums with me. That helps to mask whatever. It doesn’t matter what’s heated up, the fact that it smells like food drives them insane. It’s hard to work with them at that point. It’s teaching them those little things that not every difference or sensitivity can necessarily be entirely overcome or resolved. Sometimes it’s learning how to accommodate it or how to communicate that I need to do something different. That’s how we make the best versions of them that we can.
You’re not allowing them to avoid it. You could have said, “We’re not going to have meetings at this time ever,” or “I’m going to tell everybody else to try to wait on their lunch or breakfast,” but instead, teaching them the skills to say, “This is something that you’re going to have to deal with. This is how you might be able to deal with it better.”
I had a parent who was also a lawyer and it was a long time ago. I wish I could remember her name to tell her that she told me this, but it has been very powerful for me. She said, “When you realize that your child is different and you don’t know what that’s going to look like when they become an adult, it’s like listening to a meteorologist telling you where a hurricane is going to make landfall. When it’s far out in the water, the cone of possibility is huge and we don’t know where it’s going to land. Everyone in that cone of possibility has to plan.”
As a parent, when our kiddos are young, we don’t know what our kids are going to do when they’re older. We have to make plans for, “Am I going to need to find a way for you to be supported?” Also, “Are you going to be completely independent,” or somewhere in between? You plan for all of it and you do the planning for needing support financially, making sure that they’re going to be okay, and that you understand what you need to prepare.
As that child grows, the cone of possibility gets closer and closer in. You don’t have to plan for as much. You know where the landfall is going to be or where you’re headed. You can make different kinds of plans, but you’ve already done the legwork when they were younger to get them to this point. When I work with families, that’s what I tell them because that’s so powerful. Let’s do all the things but also prepare them to be independent. If we don’t shoot for that, we’re never going to get there.
We’re short-changing ourselves and we’re setting the bar low.
That’s not what we want.
You want them to be as independent as possible no matter what.
Go there, learn those skills, and see where they go.
That gives them power. Every aspect of their lives that they feel powerful in gives them that much more hope, joy, and confidence.
If you have a desire for your kid to read but they never get exposed to reading, you don’t read to them, you don’t show them books, or you don’t talk about letters, they’re never going to learn to read. Why not expose them to the skills that they need and work on building that independence when you’re trying to figure out where we’re going to make landfall?
I just want to reiterate that we’re not trying to minimize or make anything sound easy. We recognize fully that that cone is quite large and very different for all people.
That’s one reason why we want to do this.
It’s a journey. It’s a long-term journey that you’re going on and making sure parents know early on those resources they need to be aware of. The brain is still developing up through early adulthood at that point. The possibilities are potentially endless at that point. As Cyndi said, if you never were exposed to a car, would you ever be able to eventually be able to drive? You have to have that exposure. You have to be around it to then determine. Are you going to be one of those people that can drive an eighteen-wheeler? That is not me. I can barely drive my vehicle and park it.
I know where my limits are because I’ve had the opportunity to try those different styles of vehicles, different sizes of vehicles, to go through driver’s ed, and to do all those things in the background and experience. Some families are hesitant to expose their children to certain activities or certain skills. They say they can’t do that. Let’s break it down into the most base level that we can and see what they can do.
I was going to say you were exposed to those things because you were expected to be able to accomplish the skill of driving. You probably haven’t tried to drive an eighteen-wheeler, but based on your level of skill with a minivan.
My husband’s Expedition, I call it The Beast. I cannot park it for the life of me.
You know where your limits are, but the expectation was there at some point. I had a crazy childhood and there were definitely some curses and things that held me back. At the same time, my dad told me I could do anything I wanted. I could be president of the United States too. I was terrified to go to college because nobody I knew other than teachers had ever gone. I still had this thing in the back of my head that said, “If I wanted to, could I be the president of the United States?” Sure but I haven’t tried. I haven’t run for any public office, but there’s something in there that says I can do what I want to do.
Obviously, everybody has different skill levels and abilities are different. As you said, if you’re not even minimally exposed, then the chances are never there. If you’re not brought into different environments or opportunities. I say this all to reiterate that parents with children with disabilities will sometimes assume that their kids can’t. We then see people who don’t have arms and legs. They’re power swimmers or athletes in all sorts of different ways because somewhere along the way, somebody told them they could. Being exposed and being shown different ways of going about it, would you think that someone who doesn’t have legs could be a skater? I wouldn’t without having seen it but it happens.
There’s adaptive stuff that can be done. There are ways to accommodate. I don’t think it’s even only parents that sometimes limit. I hate to say it, but sometimes it’s the school. The school says they’re not going to be able to do this. Have we tried? Have we started at that basic level? Have we exposed them to it? Are there ways we can have them involved in learning to a degree this particular skill?
I know someone whose parents were told that he would never graduate from high school, and probably wouldn’t go to college. Now he has two Master’s degrees. He was told along the way, “You are very smart. You just learn a different way. He said, “What? No, I’m not.” “You wouldn’t get these other things if you didn’t have the capacity.” He had to focus and study in a completely different way than his friends. We hold ourselves back. We also hold others’ bare expectations.
That’s what happened with that kiddo that had the seizure. He used a device to communicate. I think his entire life, most people didn’t think that he was able to understand what was happening. There was a team of individuals who came into his home to talk through the seizure monitoring that the doctor wanted with his mom. They talked to his mom. He was in the same space. They recorded all of his movements. He also had some electrodes on his head and they told his mom, “When he has a seizure, push this button on this iPad that he was wearing.”
After they finished monitoring, the doctor called and said, “Tell me about the seizure.” Mom said, “He didn’t have a seizure.” They said, “He had a seizure and you pushed the button.” Mom said, “I never pushed that button.” They went back to watch the video. He had a seizure, took his finger, and pushed the button on his iPad. He knew what he was supposed to do when he had a seizure. He didn’t have to tell anybody. He did exactly what the doctor said even though they were not talking to him. Mom said, “Cyndi, he can do more than anybody has ever thought.” I said, “I know he can. Let’s go do this.” He’s going to have a completely different life because he pushed a button.
He had the opportunity to do it. He was told what was expected. He was wearing it. He had access.
I was there because mom said, “He will never wear anything on his head and he will not wear a lanyard around his neck much less an iPad.” That kid wore the electrodes on his head for a total of 72 hours straight and the iPad. I said, “Here’s what we’re going to do.” We walked through it. He had an opportunity to hear what the doctor said and he did it. Now his life is going to change on so many levels. Medical, work-wise, and independence-wise, his life is going to completely change.
Now she knows he can do it. He knows he can do it. His life is going to change. Her capacity for life is going to change.
That’s what it’s about.
Are you getting emotional?
Sorry. I love that family. Where they were when we first started is a completely different place than where we are. He was on a seizure medication that was causing seizures and nobody knew it. He’s in a different place. That’s why we do what we do.
I was going to say you touched on why we do what we do and what our secret is. We love helping families. We love helping them have that a-ha moment. We love helping kids reach their potential, whatever that may be and wherever that may be, and helping them do the unexpected. When parents have potentially been told down the road, “This is not going to happen. This is where your child is going to end up,” we say, “We’re going to challenge that a little bit.”
I like to call those curses. I heard it on what some people will call like a woo-woo station and talking about spiritual stuff. There was this old woman who was talking about incantations and things that she does. Somebody asked her a question and her answer was, “We think of curses as someone who is some old person with a crinkly finger that points to you and says, ‘You will live this terrible life and you’re going to be cursed.’ They go away and you have this curse.”
Our real-life curses are the ones where somebody told you along the way that you couldn’t, you’re bad or whatever. We all have those curses and some are bigger and greater than others. Yes, there are real true disabilities but we can make them worse with those curses. We can get rid of those curses with choices.
Sometimes we empower them because we believe what we’ve been told. That’s terrible. That’s a hard thing to overcome at that point because of the emotional and mental aspects. Once you get in that mindset, it’s hard to change it a lot of times.It is terrible to empower the curses other people tell us to believe. Click To Tweet
Sometimes we don’t know what to do next. Every parent is overwhelmed and frustrated. When you are expected to or when you don’t feel like you have the resources or that you’re expected to do things the same way, but have a different result because you have a child with different sensitivities or whatever it may be, you get lost along the way as well. Thank you, ladies, so much for doing what you do, and for having the passion for helping these families, the individuals, and the parents because the parents need the resources as much as the kids.
You’re welcome. We love it.
I could talk to you for hours and hours. Tell us how to help and how to look for your resources and where to find you.
We are currently working on getting our website built up. We’re doing this all on our own. We’re saving up some money so we can get our website going. You can find us on Facebook. It’s The Autism Resource Center. You can send us an email at Info@TheAutismResourceCenter.com. Once our website is up, it will be TheAutismResourceCenter.com.
We have a phone number. It’s (512) 522-2177.
If you are a family in need and are looking for support, give us a call. Send us an email, even if you’re going, “I don’t know that it’s necessarily what you guys do.” If it’s not, we can usually help direct you where to go for that help. If you know a family that’s struggling or know of a child that’s struggling or a parent, refer them to us. If you are out there and you’re looking for a potential diagnosis for your child, and you don’t know where to go or what to do, or if you’ve recently gotten a diagnosis and gone, “Waitlists are over a year everywhere I’ve looked,” call us or email us. That’s what we do. That’s what we’re here to help support.
I would say, in the meantime, also look for the great strengths that your children have and the joys that they bring. Look for all of those times of blessing and joy and find gratitude in all of it. I know that it can get tough, but the more you ground yourself in that joy and gratitude, the easier it is to get through. Everybody has strengths that can be bolstered.
The more you recognize those, the more it shifts that mindset in general. I try to look for it on a daily basis with my two. I’ve got two tweens right now. Lord, help me. One of each gender so I’m getting it from both sides. I try to look for a positive for each one every single day so we can all survive until they are adults and out of the house and down the road. It’s a mind shift trying to go from seeing all the skill deficits and all the struggle to finding joy in those little pieces. I hate for parents to miss that and overlook it.
We don’t get this time back.
I think you should be gentle with yourself because you’re a person, you’re human, and we all make mistakes. There wasn’t a guide we were given when we had kids.
If there was, it’d be outdated and wrong the moment it was written.
When I’m working with parents and I hear them beating themselves up, I always tell them, “You do what you do at the moment with the skills and the knowledge that you have. What’s important is that when your skills and knowledge change, you do something different.” You can’t beat yourself up for what you’ve done in the past or what you’re doing at the moment because that’s all you know. When we grow and change and get more knowledge, then we change what we’re doing. That’s where growth happens and that’s what’s important.When we grow, change, and get more knowledge, we change what we're doing. That's where growth happens. Click To Tweet
The fact that they’re reaching out for help and they’re recognizing, “What I’m doing is not working. I need some additional support.” That in and of itself is a huge step. It’s a hard one sometimes to recognize and to ask. Asking for help can be hard. I say that I am not one to ask for help very easily.
Saying I’m sorry can be hard too.
I’m better at saying I’m sorry than asking for help. Let’s dance it off, guys. That’s me.
Thank you, guys, so much for coming and sharing and for everything that you do.
We appreciate being here and having a chance and share more about our passion and what we do.
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