Building Your World

When we first learn that we or our child have a disability, we very often go through a period of grief for things that may never be again. And it IS important to acknowledge your feelings of loss. BUT it is also important to throw out the old expectations and start building a world designed for YOU! How can you rewrite the way life is expected to go unordered to meet your needs and the needs of your family better? Join Amy Bodkin, EdS, Autistic former School Psychologist, recipient of multiple disabilities, and mother of two fantastic kids with multiple disabilities. Let’s talk about what we CAN do!

Transcript:

I wanted to start out by introducing myself because, well, you don’t know who I am, and my name is Amy Bodkin. I am a former school psychologist and I work with families worldwide providing support. I provide testing, I provide ongoing membership where people are able to connect with others and have community.

I also write books to provide support for different areas. So that’s a little bit about what I do. I’m autistic.

I also am a homeschool mom of two autistic kids myself. They’re teenagers. They’re almost graduating.

So that’s very exciting. So this is kind of the world I live in because I am autistic myself. I have children that are autistic and I also worked as a school psychologist.

So I get to see it at all three angles, professional, personal, and as a parent. So each angle is a little bit different. Before we start talking about our world, I did want to spend a few minutes sharing a little bit about some of the challenges that we have walked through ourselves because I feel like building your world is a topic where it’s hard to listen to someone else talk about something unless you know that they’re not like, you know, talking out of their head or something.

Like that they know what they’re talking about. And so in addition to being autistic, I also have Ehlers-Danlos, which is a connective tissue disease and I have postural orthostatic tachycardia syndrome and where my autonomic nervous system does not work properly. And I have mast cell activation syndrome and my children, I managed to pass it all on to them.

I won the genetic lottery there. But we’ve had a lot of health problems and so over the years there have been times where we have, I’d say, felt excluded because there were things that just weren’t accessible. So I remember when our daughter was really little, she was extremely dangerous.

Like the child learned to, like she had the correct screwdriver and was trying to take down a sliding glass door at two. And then at two and a half, she got four screws out before anybody found her. So she was picking locks by four.

She literally swung from chandeliers in our house and thankfully my husband had installed them because if he installed them, they won’t fall down. She, at 18 months, she got into this drawer that had a child safe lock and pulled the chef’s knife out, took it out of the case it was in and then came running at me with the knife because she wanted a piece of cheese. And she had brought me the cheese and clearly I didn’t understand because I didn’t give her the cheese.

So, you know, she was very challenging and it made going places and interacting with others difficult because they didn’t always understand things weren’t always safe enough. I had to be on 24-7 to make sure she was safe. There were also times where we would try to go and participate in activities.

And when we would participate, like we’d go to dance class and she’d spend the entire time trying to take apart the sound system. So, you know, it was always something, like it wasn’t your typical experience. The places we went, they weren’t designed for us.

We went to swimming lessons and she’d go run and jump in the deep end and the lifeguards hadn’t quite clued into the fact that she couldn’t swim yet. So, I couldn’t labor there either. But, you know, then there were other times where when we started developing mass cell activation syndrome, their immune system shut down 50 percent.

And then we ended up having to go on a really restrictive diet where each one of us was on 20 foods. That includes spices and oils. It wasn’t, it was very restrictive.

And we couldn’t go anywhere because I, at least, was also reacting airborne to things. So, corn, which is in a lot of perfumes and scents because we use a lot of corn derivatives in things. So, going places was a challenge.

To go to our health food store, I had to wear a gas mask, basically, because the smells would trigger an episode. So, there were also times where I was homebound and the kids were doing a little better, but I was the one who was homebound and we couldn’t go anywhere. And there were times where, well, that actually happened in the last two years.

So, there have been many times that we have had different challenges over the years. And I know that everybody else here has had some kind of challenge somewhere. It might not be the same one.

For me, some of the bigger restrictions when I travel is I can’t wear polyester because I’m allergic to it because they started making it out of corn oil and corn is one of my triggers. I also am allergic to the sun. So, traveling in Florida is a problem because we have a lot of sun.

And so, I think it’s important to think about and to acknowledge the hard things and the things that restrict us. Not because we have to be down in the dumps about it all the time, but it helps you to be thoughtful in how you build your world when you think about what are the restrictions that we have? What are the things that are barriers? And you also really do have to acknowledge it and also to acknowledge the loss because there are losses. It does kind of suck to be allergic to the sun in Florida.

It means no going to the beach. I mean, there’s a lot of things. You can’t go to the water park with your kids.

Like, there’s lots of things you can’t do because of that. But you have to acknowledge it because if you don’t acknowledge it and you don’t grieve the loss, it shows up in the rest of your body. Women especially, and I know this because I used to be a yoga teacher and I worked a lot with women and women’s health.

When we hold stress and strong feelings and griefs and everything, it goes to the hips. Like, everything goes to the hips and those muscles can get really tight. It can prevent us from being able to sit cross-legged because the muscles are so tight and then that pulls on other things.

It can really wreck your pelvic floor too. So, when we don’t acknowledge the hard things and grieve those losses, those are the kinds of things that can happen. So, even though we’re talking about the positive side of, okay, but how do we build our world? You got to think about the fact that there are reasons that we’re building a world.

There are losses and those are big losses. They really are. It prevents us from being able to interact with people and do the things that we’d like to do, even when we do find other options.

So, the other thing I wanted to make sure we acknowledged on the front end is also the importance of self-care because a lot of times that ends up getting pushed to the side because we have so many other things to do. There’s tons of things to do and most of the time we end up strapped for cash and time because we have a lot of needs to address, but there is nothing more important than self-care. And I know when my kids were younger, a friend of mine was like, okay, Amy, airplane analogy.

We’ve got to like think about putting on your own mask first. And I was like, I don’t have time for that. That’s exactly what I was thinking.

She was exactly right, but I needed to rethink about what self-care can look like because a lot of times when we think about self-care, we’re thinking about, oh, well, I need to go get a massage or I need to go get my hair done or I need to go out with friends. And sometimes those things either aren’t accessible or we don’t have the funds to do it because we’ve sunk everything we have into supporting a child or even supporting our own health conditions. So we have to think about self-care as being something that’s not this thing over there that we go do that is expensive or time-consuming.

So thinking about it in terms of, okay, can I take a few minutes to just sit down and not think about anything and just take a minute to breathe? Can I, when I’m doing dishes, pay attention to how the dishes feel, the soap, the water, and focus on the sensory aspect and not worry about the 10 other things that I’m thinking about? Can I maybe take a break? And if I have a kid that likes yoga, then maybe do some cosmic kids yoga on YouTube. There are lots of different ways that we can take that break. Maybe I listen to an audio book with noise-canceling headphones while keeping an eye on my child.

And of course, as we get older and when we have disabilities, we have to build our own world ourselves, but that begins often with our parents because our parents are the ones who support us doing that. And they’re also usually the ones who help us come up with the creative solutions, which is a lot of pressure. But the approach and the attitude that we come at it with gets infused into children too, no matter what age they are.

So when it comes to building your world, I think the first thing you have to think about is what do we already have that we can use? Like what’s already available to us? And I thought about this a lot with regards to my kids because I’ve spent a lot of time building our world as a family. And a lot of times the needs that we had were my kids’ needs. But along the way, there’s also been ways that I have built our world to support myself too.

So it’s a little bit of both. When you think about things you already have, so depending on where you live, maybe you already have speech therapy as something that you have available. Maybe you already have occupational therapy as something that’s available.

Back when my kids were little, we only had speech therapy in our town. We had no occupational therapy. We had no physical therapy for children.

To do that, you had to go two towns over. So some of those things weren’t things that were available, but there were other things that were available. We did swimming lessons.

We did horseback riding lessons. And they didn’t even have like hippotherapy or anything, but I found a special education teacher who taught horseback riding. And she let my three-year-old and her best friend split a lesson, which made it a lot more affordable for us because we were splitting it with her friend.

So thinking about what is available, we used to do MOPs, Mothers of Preschoolers, and we would go and spend time with other families and make friends with other kids. And to make that a possibility, I ended up running their kids program so that my daughter could participate because I was thinking, okay, what’s safe for her? What can she do? There are so many different things that we have available within our community, and sometimes we have to get creative, but also advocate. So, you know, call them up and say, hey, we’d really love to participate.

My daughter is XYZ, or I can’t do this. Do you have any ideas about how we could participate? Or do you have some other way that we could access this activity that would be accessible? So I think that thinking about what we have available already is a really good starting place. We also did dance and tumbling at one point.

They did not have a special needs class. There wasn’t anything like that in our town, but we talked to the teacher. She put us in a class with a smaller number of people of various ages, and it was a wonderful experience.

But it never would have happened if I hadn’t asked and hadn’t been thinking, okay, what do we have available in our area? And when you’re thinking about what’s available, what you’re thinking about is, okay, so what are the things that we need, you know? And a lot of our needs come down to our development. So oftentimes, communication, so usually speech therapy is how we get that. We’re thinking fine motors, so usually occupational therapy.

We’re thinking gross motor, which is usually physical therapy. Okay, but what if you don’t have those? If we don’t have those, what can we use instead? Also, there’s the social-emotional aspect. So having friends, that one’s kind of a big deal.

We all need friends because we’re social creatures, and it’s one of our big needs. I think that if ducks are raised alone, they eventually get depressed and die because they’re social. And I think that human beings, in a lot of ways, are the same way.

Even if we don’t need a lot of people, you always need some people. But thinking about those needs, that’s how I thought about it. It was in terms of what are our needs and what do we have? So, you know, we’re thinking, okay, fine motor.

We don’t have OT in our town. What do we have that’s fine motor? You know, maybe we do arts and crafts. You know, thinking gross motor, what do we do for that? Or even thinking occupational therapy, a lot of times that deals with sensory processing.

What kind of sensory processing activities can we access with what we have? So a lot of times, when you go and get a diagnosis for a disability, they give you this long list of things that you’re supposed to do, and then as a parent, you feel overwhelmed, and you’re like, oh, my gosh, I’ve got to do all these things. If I don’t do them all perfectly, then I’m going to fail my child, and they’re going to have a miserable life, and it’s going to be all my fault. Because, you know, that tends to be where people go.

Or at least that’s where I went. I was like, oh, no, there’s so much to do. And so, hello! Come on in.

Oh, guys. So good to see you guys. This is Agnelli.

She’s part of my membership group. I’ve never gotten to meet her before, and I’m so excited that her and Matthew and her husband are here, because they’re amazing. All right.

Sorry about that. I had to take a moment. So anyways.

So building your world, we’re talking about using what you have available. Thinking about what you need. So another thing that is helpful, especially when you’re thinking about social needs, so this one can be a real challenge.

So when my son was little, he could talk fine, but he had a really hard time with, like, knowing what to say and trying to make friends. So he’d go to the playground, and he’d kind of, like, stand there and follow people around, but he didn’t really know what to do. And so this was where it got smart, using what we already have.

I’m like, we should spend a lot more time watching YouTube videos about Minecraft, because then it’s going to give him something that he knows that everybody else wants to know, and it’s going to be easier to make friends. And it worked really well. That’s a good idea.

Yeah, it’s something we already have. And there are children’s YouTube videos, like Stampy Cat was the one he watched when he was little. And he watched Stampy Cat all the time.

He knew all about Minecraft. And that was the cool thing at the time. All the kids wanted to play Minecraft.

Still pretty cool. So they all wanted to watch Minecraft. And so that was something that he knew, because he had spent a lot of time learning it.

And that kind of gave him his in into social aspects and making friends and all of that. And that’s something we had. Oh, something else we already have.

So Facebook groups, local Facebook groups, those are great ways of finding other special needs families, because they’re all trapped in the house usually too. Or at least I felt that way a lot of the time. Like I was trapped in the house, because I’m like, this is my safe place.

It’s like locked. I know no one is leaving. I’ve got alarms on the door.

I know everything in this house is safe for us. But there’s a lot of other families that are the same. And finding Facebook groups, talking with other parents, going, hey, I have a kid this age, and this is what my kid likes to do.

Is there anybody else who has a kid that age? Would y’all like to like, I don’t know, come over and play with Legos? Or would you like to go meet somewhere that you consider to be safe for you? There’s also a group called Emerald Coast Exceptional Families. It is actually located near where I live outside Pensacola. However, they have an event every year that is open to anyone who wants to come.

And it’s called Mom Camp. And the whole point is for you to leave your child and go stay away for a weekend. And I never thought I’d be able to do that, because I was always the primary one.

I was always the one dealing with the allergies. But it was a goal to work towards. I started by going during the daytime for several hours.

And I was like, okay, I can do that. And then one year, I was like, okay, we’re going to try it. I’m going to stay overnight.

We’re going to give it a try and see how it goes. And it was a little bit difficult at first because I have one that gets panicked when I’m not around. But it was a really good thing for me and for them.

It was difficult in some ways, but it was worth it. And it was really worth it to be with other families, other moms especially, who have a lot of the same day out experiences that I have. Because nobody gets you better than somebody else who’s living a similar life, even if it’s different.

We had families where their child is dealing with a significant medical condition. We had families where their child is autistic. We had families where their child has Down syndrome or is diabetic.

There was a wide range of differences. And our lives look different, but there’s certain things that we have in common. We do have limitations where we have to think about, well, what do we have available to us? So, that’s another thing that is already something that’s possibly available.

When I was homebound, my kids couldn’t get out of the house much because my husband was working 12-hour days. He wasn’t home. And so, they were with me and we couldn’t go many places.

So, that’s a little bit of a problem because you have two autistic children. People are like, well, you need to socialize. Well, how do you socialize when your mom’s homebound? It makes it difficult.

So, we spent a lot of time teaching them and letting them get on the computer so that they could talk to other kids online. So, we spent a lot of time teaching them internet safety rules. I think our rules were you can’t give away any personal information.

You have to use an avatar name and you have to sit on the computer next to your sibling while they’re on the computer so you guys can tattle on each other. But thinking about, well, what do I have? You can’t just go, well, I’m homebound. My kids can’t have a social life.

We’re done. Or I’m homebound and that was the other thing. I couldn’t necessarily send them to school because we were reacting to so many different allergies and stuff that sending them to school wasn’t really safe either.

And then they could also bring home germs that weren’t safe for me. So, you know, you can feel like there’s a lot of different barriers that block us from things. But there are still things we can do to meet those needs.

If we think about what are our basic needs, think about development needs, gross motor, fine motor, cognitive, communication, and then social emotional. And that’s really helpful when you think about it that way. As far as cognitive skills go, okay, so you’re homebound.

You can’t send your kids to school because they’re allergic to like, well, you’re allergic and they are allergic to the whole world. So what do you do? Well, you know what? Another thing that was accessible to us is to homeschool. That was something that we were able to do.

It was something that was accessible. Was it my first pick? Not really. That was not in my 10-year plan.

I thought they were going to public school. That is not how that went down. And I ended up loving it though.

But it was something that was accessible. It was also another opportunity to connect with other people. A lot of the secular homeschool groups, especially, are very neurodivergent friendly.

Some of the religious ones are. It just kind of depends. Some of them have too high behavioral expectations.

We just couldn’t hang. So anyways, but homeschooling was a good option. In addition to that, there were other activities that we could connect with, whether it was for a social outlet, a cognitive outlet, some kind of finer gross motor skills.

We did drama classes. There were all kinds of things that were activities in the area. If you looked hard enough, you found different resources.

And the best way to find those is to connect with other people, which you might be like, yes, but how do we connect with other people when it seems like nobody lives my life? And that can be a bit of a challenge. And I mean, it’s nice to have friends that you know from like support groups who maybe don’t live near you. We have a corn allergy group on Facebook, and that was a lifesaver because so many kids in that group are anaphylactic allergic to corn.

And so their parents were able to tell us where corn was in different things because I was having reactions to corn, but they were delayed reactions. And so it was really hard to tell what I’d gotten into. And I made friends with a guy in there.

We shipped each other different foods that were corn free, and I’d ship him crayons that didn’t have corn in them because, yes, crayons have corn in them. So many things have corn in them. So we’d ship things back and forth to each other, and that was great to have a friend that could get you.

It’s also important to have people in person that you can relate to and connect with. So that brings us to the second point. Second point is when you don’t have it, create it.

And one of the things that I learned is that if you create it, somebody else is going to love it, and they’re going to want to participate. It definitely is a little bit nerve-wracking to create something because you’re like, what if people don’t come? Or what if they think that my house is messy or something? They don’t care about your house. They’re thrilled to be able to be invited anywhere.

So we just think they care about our house, but they really don’t. And if they do care about your house, they are not your people. So don’t worry about it.

When the kids were little, Jessica was needing, she was really kind of needing a preschool type group. But we tried going to preschool, and she ended up being kind of catatonic. I would go pick her up, and she’d be rocking back and forth and couldn’t stop and couldn’t talk, even though she did have some words by that point.

And then once she’d been in the car for about 30 minutes, then she could talk some. So it was way too overwhelming that I still wanted her to be able to have some of those same kinds of interactions. So we created our own neighborhood preschool group.

There were some other moms on the road, and they had little ones. And I was like, let’s get together and do a preschool group. One of y’all is a preschool teacher.

It’ll be fun. And they would all come into our house once a week, and we would do all kinds of fun activities, have lunch together. It was a lot of fun.

But there were also other things that we did. As they got older, I would go into Facebook groups for people with disabilities. And I’d be like, hey, does anyone have a kid who likes Legos? Does anyone have a kid that likes books? I’ve got a kid.

They’re about this age. This is what they like. And then once I found some other people who like the same things, I’m like, would y’all like to come over and do a book club? Would y’all like to come over and do a Lego club? We’ll just like get together and just build Legos.

That’s what we’re going to do. Nothing too exciting. It didn’t take a lot of effort.

It was more just the effort of inviting people over. And I think inviting people into your world, that is a big part of building your world. Because sometimes going outside of our home is hard.

But inviting people in is something we can do. And I promise you, they really don’t care how your house looks. They probably want a friend just as badly as you do or your kid does.

So things we can create. Those are a couple options. Like I said, homeschooling was definitely an option that gave us opportunities to create something.

And I say homeschool is something that’s available to you already, but it’s also something you create. Because it does take work, but it can be a way of finding people that you connect with. Because it gives your kid a chance to grow and learn at their own pace.

And being able to grow and learn at your own pace, you can find other kids that are doing the same thing. And especially since when you go, like in our area, we have tons of homeschool activities. And honestly, in most of Florida, I think there are a lot of homeschool activities.

Because Florida is a big state for homeschooling. And when you go to a homeschool activity, there are tons of kids there. And they’re all different ages.

And they’re all playing with each other. And the key there is that a lot of times when they go to school, they’re all in the same grade. They’re all in the same class.

And so when they don’t do things like the other kids their age, it’s hard to find someone to connect with. But when you hang out with kids that are all different ages and they all play together, it really doesn’t matter where you are developmentally. There is somebody there who likes the same thing you do and wants to hang out with you.

So I think that’s a really great and often untapped option. Because it allows us to kind of create an environment that is perfectly suited to a child. As adults, you really have to start thinking about jobs.

Because if you have a disability, how are you supposed to do a job? You know? Like some jobs, it makes sense. Other jobs are more difficult. I was a school psychologist, like I said earlier.

School psychologists work in schools. Like that’s how it works. That’s what we do.

And when you are allergic to the freaking world and when you are allergic to the sun and when you have POTS and can be at risk of passing out and all of these other things, working in a school may not be for you. It’s definitely not for me. And so I had to get creative.

And I wasn’t really sure what to do at first. And quite honestly, I was too busy at the time. Because my husband was working long hours.

But I was the one who was in charge of keeping up with our kids. And like I said, I had a Houdini I was raising. And there was no way anyone else was going to keep her alive.

One of my best friends, actually, she was like, okay, the only reason that child is alive is because of you. Because nobody else would have thought to follow her when she grabbed her hoppy ball, went to the other room, and then decided to jump on the bed and then fly off the bed on the hoppy ball and almost hit her head on something sharp. Like. I saw her take the hoppy ball. I knew exactly what she was going to do. She was going to go jump on the bed with the hoppy ball.

I just knew it. So, like, there needed to be someone to watch that child and nobody I could pay would have known her the way I did. So that wasn’t really an option.

But as they got older, I did start working again. And I was like, okay, well, what am I going to do? Like, what are my options? Because, yes, I’m limited with my own disabilities, but I’m also limited as a parent with children who have disabilities who still do require a fair amount of support. So what do I do? I did consult with private schools for a little while so I could come in and I could leave.

So that worked out pretty well. But what I ended up finding and loving was I ended up working from home on my computer supporting families worldwide. And I absolutely love it.

And one of the things I realized over the last two years, I’ve been really sick the last two years. I was homebound in 2023? Three? No, four. 24.

No, 23. It was 2023 into 2024. And I was bedbound for some of it.

But what I realized was that I had unintentionally created what I needed. I created what I needed 10 years ago when I was homebound before. I created the opportunity for me to be able to work online from my bed, to be able to have community from my bed with other moms and other kids.

And it made such a huge difference because I wasn’t alone. I was not all by myself. And it’s funny, I didn’t realize that’s what I was doing when I created it.

But it is what I was creating. I was creating what I had wanted, what I would have needed. And I think that it has created opportunities for other families as well to give other families community when they don’t have it.

So when we’re thinking about jobs, we’ve got to think about our own personality, our own strengths and weaknesses, our child’s strengths and weaknesses, what they’re interested in, but also what are our liabilities. And let’s take that into account. Like my daughter wanted to be a cosmetologist for a very long time.

Like there’s always I’m going to be a cosmetologist. And then the other day we were reading in a health textbook and she’s like, wait, what’s an art therapist? That sounds really cool. And I’m like, oh, you’re right.

That is really cool. And she’s like, you know what? I think that’s what I want to do because I have POTS or postural orthostatic tachycardia syndrome, which means you can like be prone to passing out when you stand up all the time. And she’s like, I think I want to be an art therapist.

It makes more sense when I have POTS to provide me with an opportunity to do something artistic that helps other people, but doesn’t have me standing all day. So we got to think about what our personality is, what we’ve got to work with, but also what those liabilities are and how can we find a way of contributing in a positive way? And because we all, we all need to contribute in a positive way. It’s something, it’s part of that social human drive.

We’ve got to, we want to be able to love other people. We want to be loved. One way that you love other people is by contributing to society.

It makes us feel valuable. It makes us feel needed. It’s important.

So anyways, so I did want to spend, so let’s see, my three points were, we got to acknowledge what we don’t have and you have to grieve the loss because otherwise it’s going to show up in your body. That’s a problem. The other thing we need to do is to focus on what we have available to us.

What’s already there and how can we make that work for us? You might not have OT, you might not have PT, but you’ve got other things you can use. And then the third point is to create what you don’t have. I want to spend a couple minutes telling you about something that I created that I love and then after that we can discuss like specific questions or things that are like important with you guys for world building because each person’s experiences are different and yours aren’t going to be exactly the same as mine.

I’ve had some varied experiences because I have three different people in my house with disabilities, but a lot of them are genetic so they’re the same. All right, so one of the things that I created that I absolutely love is I created a membership group and that is what I was telling y’all about a minute ago. Yeah, Agnelli’s in it.

And I love it. It’s been an opportunity like with the membership what I do is I provide parents with the opportunity to have free testing for their whole family every year, to have a school psychologist that’s following them and kind of going, okay, this is what’s going on. Oh, hey, you know what? We just had a dip in this.

I think we’ve got a problem coming up. It’s not a big enough one. You’ve noticed it yet, but let’s go ahead and take care of that before it becomes a big hairy deal.

And in addition to providing ongoing support and the free yearly testing and letters of accommodation, we also have activities throughout the week online. And it has been huge, huge for me. And I think it’s been huge for them too.

Once a week we play Minecraft on our private Minecraft server with the kids. That’s social skills right there. Like when one of the kids comes up and says, someone murdered my Axolotl and his name started with a J. And I’m like, all right, there’s only one kid with a J in this room and he’s just as upset as you are.

So I’m thinking it’s an accident. Let’s go try and find another Axolotl for you. So there’s problem-solving skills.

It’s a good thing. We spend another hour a week playing Dungeons and Dragons. Before that, it was going to be Critical Core, which is like for therapists, but oh my goodness, the kids are like, we need more character options.

So I’m like, okay, we’ll play Dungeons and Dragons. So we’re working on teaching all of them how to play now, which has been fantastic. Lots of good problem-solving skills.

They couldn’t quite figure out the first time around that you were supposed to work as a team. They kept all wandering off and going and finding different pets. And I’m like, all right, this is a problem.

So I had to curse them. I told them if they didn’t stay on the path, they would die. And it worked.

They did eventually start working together more as a group. So games like this teach us those skills to be able to interact with others. And I have moms that play Minecraft and Dungeons and Dragons with us.

And it is fantastic. And they have a great time too. I used to play with my kids when they were little.

When they were little, they started playing Dungeons and Dragons with a group of their friends that were meeting at the library. And I would go and play with them. I loved it.

My favorite game we ever played was there was this dragon we’re trying to defeat, and he was just killing us. So I got real smart. He had eaten a bunch of us.

So I animated the dead, and they killed him from the inside out. Very smart. Creative thinking.

But it’s fun though, because you get all that creative outside-the-box thinking. You’re thinking and working with other people. You’re creating characters.

You’re thinking about character traits. You’re looking at social situations. So that’s a really great option.

But we also have a parent’s book club. We’ve been reading The Body Keeps the Score. And oh boy, does the body keep the score.

It most definitely does. When you go through things and you don’t acknowledge those losses and griefs, it definitely comes up in your body. And we have, oh, office hours once a week where we just get in with a bunch of moms, and we talk about whatever’s important to them.

And it is fantastic. There’s a problem. Okay, let’s problem solve that.

Let’s pull our ideas. And someone will go, hey, I read this book. It was good.

Or hey, I tried this with my kid. It worked out well. It’s fun.

I really enjoy it. And then we also have a book club for kids. It’s actually a Jewish cultural book club, because I like to encourage diversity.

And one of the moms wanted to do a Jewish cultural book club. And I was like, I love that. The more we understand each other, the better that we are able to love and interact with each other.

And that goes with disabilities. It goes with religions. It goes with cultures.

It goes with everything. And when you create a community, the important thing about creating a community, and I do love creating a community, is you have to set the tone. You are the one in charge of setting the tone.

And the tone you set dictates what that community will be like. And I’m extremely protective of my community, because I want that tone to be set properly. Because no one should come in and feel like they are less than, or that someone doesn’t value and appreciate them for who they are.

So I think that’s really important. One of the really fun things that’s developed is that over time, I’ve invited the kids to create their own clubs. So we have kids who run their own events, all by themselves.

Well, I give them a little bit of support in the beginning. But they run their own clubs on things they’re interested about. So they get leadership opportunities they might not have gotten otherwise.

One of the kids created a ballet club. One of the kids created a Rubik’s Cube club. One created an origami club.

I always tell them, you know, whatever you like, there’s somebody else that likes what you like. Especially when you get together a group of kids with disabilities. There’s a definite connection.

They like a lot of the same things. So anyways, that’s a little bit about the community that I created. Part of the world that I built.

I built it. I thought I was building it for other people. I realized later, I built it for myself too.

And it’s fantastic. Because we have kids who’ve had cancer. We have kids who’ve had autoimmune conditions.

We have kids who are in wheelchairs. We have kids who are autistic. We have kids with all kinds of different things going on.

And quite honestly, their parents, well, the apple doesn’t fall far from the tree. Usually a lot of the parents have some of the similar things going on. But they can all get online together.

And we can play Minecraft together. And a kid who can’t run up a mountain gets to run and play with other kids. And it creates opportunities that we wouldn’t have otherwise.

So, don’t underestimate the power of virtual connection. You want people in person too. But virtual connection is also very valuable.

Especially since virtual connection can connect you in real life in person. So, mm-hmm. Agnelli’s right here.

So, all right. With that said, we have 15 minutes left. I wanted to make sure I saved a little bit of time at the end because I realized that what I’m sharing with you is based on my experiences.

And you guys may have different things that are not specific to the specifics I shared. So, I had to give y’all the opportunity to share some of those things. Maybe we can brainstorm some of those things.

Or maybe there’s something that you’ve done that you’re like, that worked well. I need more of these things in my life. Or maybe it’s, I’ve got this challenge.

I don’t have any rent. Or I live in this area. I haven’t found these people.

Or this is the need we have and we don’t have it in our area. There’s no wrong question. Or even statement.

You can say whatever you want. Safe place. Yes.

So, our daughter is 22 at your exhibit table. Yes. So, she finished school.

We thought there would be some things for her. And over the years, I’ve attended lots of resource fairs, et cetera, met people from different places. And they all say, oh, we can’t wait for her to join us.

And then we started in September getting serious and looking. And we’ve had a lot of closed doors. She’s very, she has Down syndrome, autism, pica, apraxia, and a lot of other things.

And so, she’s very, very precious, young lady, blessing. So, I have to start with that. But we’ve grown with her.

But she is very much, she doesn’t have any friends. I don’t really think, I don’t know that she wants any friends. She’s very much to herself.

So, in school, she’s always been to adults. So, she’s very adult seeker, adult. When there are other kids, she pretty much ignores them.

Or she might touch their hand. But that’s it. They’re less predictable.

Yeah. Very true. Very true.

So, what brought me here was just your title. Because I’ve talked to, we live in a very large city. We live in Jacksonville.

So, you would think there would be opportunities in Jacksonville. So, I’ve met with some different people that could make that happen, who have all agreed and are looking and all. And that’s good.

But a couple of weeks ago, I was like, maybe I need to start my own homeschool co-op, was kind of that thought. Great idea. But I’m not a homeschool.

I mean, I’m never, you know. But who says you can’t? You can homeschool past 22. And there’s nothing wrong with that.

And so, what I started doing is calling. I called a place that’s a gem place for those with autism and for kids. And we’re meeting with them this next week to talk about doing something for adults like Kara.

So, I started that process. I don’t know. I feel like the horseback riding idea was something.

So, we’re just kind of- What does she love? She loves listening to her music in her left ear. Honestly. I mean, she puts her radio up to her left ear.

Or she stems on musical toys. You know, we do- She loves music. Because it’s- So, we’ve thought about some music, finding- Music therapy.

There’s also a company that, it’s where we go locally, that they have virtual lessons. And I think they have virtual music therapy. And they are covered by the Florida Scholarships.

So, if you’re somebody who has funding through that, that might be an option. But music therapy is an amazing option. There’s also art therapy and dance therapy.

But I don’t have- We have one art therapist in our area. And we have no dance therapy in our area. But there’s all kinds of things.

And if you want to do therapy, but you don’t have a therapist, sometimes somebody who’s just really sensitive and in tuned and is very focused on the person and what they need can be a great option. I had a yoga therapist one time. She’s not a yoga therapist.

But she basically was a yoga therapist. Because that’s kind of where her skill set was. So, you can find all kinds of different options.

Starting with what they love is helpful. And a lot of kids that love music tend to be hyperlexic. They like to read a lot.

They like letters. They memorize letters well. They pay attention to sounds.

Oh, you have one of these? That’s us. That’s definitely us. I have one of those.

Yeah. So, they love music. So, that usually is a way in.

Sometimes with hyperlexia, you do see some comprehension challenges. Like, I’d tell Austin, go put your shoes by the door. And they end up in the fridge.

And I’m like, I don’t understand. How did this happen? And I learned this later, much later. Because they didn’t teach it to us in graduate school.

I had to figure it out through the School of Hard Knocks. When we process information in our minds, we make pictures in our mind. So, there’s two kinds.

One is we make, we see symbols. So, like you see words. That’s how we spell in English.

Because English doesn’t make any sense. So, you have to see the word. And when people don’t see the word, a lot of times they end up getting diagnosed as dyslexic.

Because they can’t spell. And the reason they can’t spell is because they can’t see the word. Because sounding it out and trying to spell it is not going to work in English, generally speaking.

The other kind of visualization is making movies in your mind. So, when you read a book and then you go to the movie theater and you go, that’s not how I pictured it. That’s what you’re talking about.

And a lot of hyperlexics don’t make that movie in their mind. And so, that’s why they have trouble with comprehension. It’s not that they can’t comprehend.

It’s that they can’t remember long enough to comprehend. And so, the cool thing is, is that with both of those, I learned with mine that you can actually address those. Like, you can strengthen those skills so that they’re able to do it more easily.

And when they’re to a point where they do that well, or they’re ready to learn to do that, Jessica improved like three grade levels in spelling in three months. And Austin improved five grade levels in listening comprehension in one year. But you have to find like, what’s that one thing that’s blocking me? Is that the part we’re ready for? So, lots of fantastic resources out there.

It’s just a matter of like, finding and connecting the dots. It’s like connecting the right people with the right thing. I feel like that’s what I spend a lot of time doing.

I connect people with other people or connect people with other resources that they need. That’s what I do. I’m a matchmaker for people and things.

I don’t do relationships. I don’t do that. At least not yet.

Maybe someday I’ll create a matchmaking service. I was going to say, as they get older. It could happen.

You never know. Thank you. You’re welcome.

Think about what she loves though. I think that would help a lot. And music.

Music’s big. And opportunities. You might even call up like a local symphony or something.

We have an activity where families are able to come in and they’re able to like, let their kids try out different instruments. Which is kind of cool. So, I don’t know.

Just start with what they love and then kind of go from there. That’s always the way in. The way in is what they love.

Anybody else? Let’s see what time we got. Okay. So, you’re talking about your membership.

Maybe I need to get in touch with you later. Do you have your business card? I do. Come by my booth.

I’m in the Book Fair area. Yep. That’s a great way to connect with me.

And I can answer more questions there. I won’t be there until about 11. But my daughter is there.

What’s her name? Her name is Jessica. She is no longer super duper dangerous anymore. She can still pick locks, but she uses her powers for good, not evil now.

How old is she? She’s 17 now. She will graduate. Well, she’ll go to dual enrollment after this next year.

So, she’ll take a couple extra years to graduate. She’s doing really well. She’s very good at running the booth.

So, she’ll tell you all the news and all the details. Well, I mean, it’s actually that I want to bring some of the parents. Yeah.

Bring them by. Bring them by. That’s what I need, you know, that your business card.

I have the card. It’s there. But you can also see all the other information that’s there and she’ll tell you about it.

One of my favorite things, honestly, is that recently my teenagers have both come up to me at separate times and told me, Mom, you have a really great community. And for your teenagers to say that, yeah, especially when it’s something that takes time away from them at times, that’s huge. Yeah, it’s been wonderful.

Like, there’s been nothing that I have not loved about it. And there aren’t many things in life where you can say that. So, come by.

I’ve got a business card thingy. And down in the book fair. Yeah, right near where they’re reading aloud.

There’s a place with a microphone where they’re reading aloud and I’m right there in the corner. My sign is like a light pink and light yellow. Yep, and it says Amy Bodkin Consulting.

You can also just search my name. Okay, definitely. Okay, I think that basically what I want to say is I know Jessica’s going to give you all the information, but I want to ask my parents first.

That’s true. Now he’s got the inside scoop. I can tell you, it has been such a difference, Mom, and living in this new world.

Yeah, exactly. Because, I mean, in life, I always tell everybody that I was praying for anything. And in the middle of the prayer, I don’t know how that even happened, I was watching some YouTube videos and her video just, you know, algorithm just came through.

And it was like somebody was answering my prayer thoughts and questions in her video. And the amazing part was when I got involved into the membership, because I just got exactly the answers for all the mothers that already went through. By that time, I think he was three.

I think he was 80-80. Yeah, he was tiny. And I had just got the diagnosis, and my world was coming down.

Because it’s not about the diagnosis itself, it’s just what to do with that now. And basically, I told Amy over the time, the only research that I had at that moment was that barely, really bad photocopy of websites and links and places and how many hours for therapy I had available. And that’s it.

That’s not much. And I support for the parents to talk to you about exactly what your child is going through and their situation. And solutions.

So I call the solutions. The most important part, and I have done this for three years now, is the evaluation. That cannot emphasize enough.

Because it’s just like the questionnaire becomes your child. How is that even possible? I don’t know. Customize.

Personalize. I’m very detailed. I ask a lot of nosy questions.

Like we really become good friends, because I know more about you than you probably tell a lot of other people. Amy knows how much I will poop. Yes, I do.

I do. And I ask. No, because I want to know.

Because if we’ve got constipation, or maybe we’ve got yeast overgrowth, and nobody knows unless they ask those questions. And those things are common in autistic kids. But there’s so many nosy questions in there.

But it’s because I’m like, okay, what’s going on with this kid? What is going on in your body? How are you feeling? Are you feeling good? Because if you’re feeling good, that’s great. But if you’re not, we need to know. Yes.

That’s exactly what the evaluation does for you. You do see the problem in numbers. And you see the scale.

Oh, yes, this is good. But what is bad is that this decrease. And how is that good? Oh, because it’s bad.

And you don’t see that. And having a psychologist with Amy’s experience in your mailbox, in your inbox. I mean, I got to the point that I just wanted it.

Exactly. Yeah. But how much it costs to get your therapist or your psychologist in 30 minutes only, when we have hours every single week to get access to her knowledge, to her experience, and all the parents around.

Yeah, I agree. And I literally do get messages from most of the members on a regular basis. It’s either in my email, or they’re sending me a message through Facebook, or they’re texting me.

And I enjoy it. I really do. Well, that is all the time we’ve got for today.