Right, right. Yeah, I was actually going to say thats like with my son, and some of the kids I’ve worked with, I created visual schedules. And I also created books. So for example, like in the bathroom, for example, I would put a visual schedule, first use the bathroom, then you wash your hands, brush your teeth, comb your hair, and then you can get ready for bed. So a visual reminder is always helpful scheduling tool. I think, from my experience from teaching and having my son, I find that it’s very comforting to have a schedule that you can rely on. It brings peace, so I get that. When it comes to transitioning, what I used to do was I had a kind of tacting system. The tacting system would be for example, macaroni and cheese would be something that we’re going to have for dinner, I’d have a picture of that. And then I would show different things we would need to do before we would have dinner. Okay, so there might be a picture of homework, there might be a picture of feeding the dog, something simple, I think it might be a helpful thing to have a schedule that has not more than like four or five things to begin with. And then as your child gets used to it, you can add different elements to that. When you guys go out to dinner? Does your child have a special type of a menu? Does he try to speak to the waitress or waiter? How do you work with that?
Yeah, he can definitely order his own stuff. He is a very picky eater. Okay, stuff like chicken tenders, and mac and cheese. So he definitely has no problem with tell telling the waiter I mean, he can. He has no problem with speaking.
One thing I noticed lately because I’m always aware of things like this, and because I have a daughter who has special needs as well, was when I was at McDonald’s, I noticed that they had a sign that said, if you need a visual menu, they can provide that to you. So, if you want your child to feel independent, and either maybe they speak maybe they don’t either way, a visual menu is something that’s offered in a lot of different restaurants something for everyone to know you just have to ask for one.
I didn’t I didn’t realize that.
Yep, definitely. McDonald’s has one. I think Wendy’s does as well and they also have schedules in braille. That’s another thing I noticed.
Just to let people know why Patrice said that it is because I am totally blind. But usually what I’ll do as I look online before I go, but it is good to know that that people do have visual manuals for my son because like you say, that will allow him to be independent, and he can pick out what he wanted. That’s pretty neat.
Yeah. Because what I what I’ve done in the past is, you know, even for I did it for my grandmother who had a stroke, I made a book for her. And I laminated I have a big laminator, maybe it’s a little bit of an issue for me, but I like laminate and things because it’s durable. So what I’ve done is because, she wasn’t able to speak, I made a a menu for her, I made different daily things that she might need, and it helps that she can tear it off because it is made with Velcro. So you can have a big list of items that you laminate, and you can pick and choose what your child or if you’re working with an older person who isn’t verbal that they can pick and choose what items they need on the schedule. So that’s a good thing. So what are some things that when you first thought that your son might need a little help? When did you first notice besides the speaking, What other things did you notice that weren’t happening developmentally?
He would just throw tantrums a lot. He he was a real picky eater, and like you say, but not speaking, and different little things like that. I knew autism existed, but I really didn’t know. And a lot, a lot of people were saying, Oh, well, he’s not talking, he should be doing this. It’s all your fault. You know, he’s not doing it he should be is, you know, and some of these people had kids, and some of them didn’t. But you know, I mean, I didn’t really, you know, know, I just I just figured, you know, some kids get behind and, and you know, and but once he actually started going to preschool, because they were able to get him in pretty early, he did start talking and communicating more.
Some things that I noticed, for me, at an early early age he I noticed that my son was on the spectrum. When he was around, I’m gonna say 20 months, 22 months, which is a little bit early, because early intervention usually starts a little later. But I noticed around that time, and it’s because I had edited a book years ago, when I worked at Elsevier Science publishing, I edited a book on autism, it’s something about that book stayed with me. I don’t know why, because when I saw him blinking lights on and off, then he would line up his trains. That was another thing he used to do. Another thing that’s really important two things I wanted to share concerning children on the spectrum, a lot of times when it when they say that they like particular foods, they might have a texture sensitivity, which my son definitely had. For example, if there’s a piece of steak, for example, it might feel strange in their mouth and uncomfortable for them to chew. Because that resistance, you know, the toughness of steak, for example. And sometimes they choose things that are softer and easier to break down in the mouth, as opposed to like a pork chop or something of that nature. So that’s why they tend to go for the chicken nuggets. He wanted macaroni with butter instead of macaroni and cheese, but it’s because they want to have something they get nervous when things are harder to chew. That’s like a texture sensitivity.
My son still does the light switch thing and doors. He likes to play with doors.
Right, right. Yeah, those are that’s called perseverations. When they do repetitious behaviors to help them feel more comfortable. It’s kind of like a self soothing type of a behavior. That’s what happens a lot of times, like my son also played with tags on toys, you know, they have tags on them. And then sometimes you also had a thing where he only wanted to wear the same shoes. So I literally had to buy like eight pairs of the same shoes for those years. And thank goodness, they still had them because then he would have gotten upset. So that’s what his thing was. But something else that’s important that I found out that I want to definitely share about children on the spectrum. There’s a comorbidity that I’ve noticed and that means that besides having the neurological issue that surrounds having autism, they also have a digestive piece. So what do I mean by that is, it’s not that they just pick certain foods, they have a difficulty breaking down, and they sometimes get obstructions, or they can have like a loose bowel movement, because they have an issue with certain maybe dairy, for example, or oily foods. That’s one thing I wanted to mention. You have to keep an eye on their digestion. And be aware of that, that it’s not uncommon. You know, and you can talk to a gastroenterologist, pediatric, if that’s an issue. But besides foods, and then we talked about the schedules, what about eye contact? How does that How did that work with your child?
I haven’t really heard anybody say anything about about it.
The reason I asked that, is because my son wouldn’t look me in the eye. And when I’ve worked with children, they don’t always look you in the eye. It’s a matter of fact, to say to a child who’s on the spectrum, look at my eyes, look at my eyes, it actually looked me in the eye, it’s actually very stressful. There’s a book called look me in the eye, all about a child’s perspective. He’s now a teenager and how it used to stress him out. When people say look, in my eyes, it was just a very stressful. So oftentimes, we say, look at my nose, because then they don’t, they’re still looking at your eyes, but it’s not the same thing. But that’s, that’s not uncommon. When they don’t want to look in your face, they look away. And if they’re not affectionate sometimes that’s because they need to feel more comfortable. Have you had that experience that there might not be a lot of physical touch comforting with your son?
He actually gets in people’s personal space. I need to remind him, so.
It’s different. Yeah. That’s another alternative to is not knowing the social cues. So one thing that really has been beneficial that I found is social skills classes or social skills. Like they have training with the speech pathologist is your child. Does your son Daniel have speech, at school?
I know that they were doing it but I think OT and speech they decided that he did not need it anymore.
Okay, well, yeah, he’s nine. So it’s possible that he doesn’t need the OT anymore for the fine motor. But concerning any type of social cues from children, knowing to stand back a little bit, knowing that type of thing, he could still benefit from it, it’s something that you can always if he has an IEP, you can always revisit it. Right, that’s something you think that he might benefit from in the future. So what are some concerns, what are some things that concern you for him at school?
I know that not only was he diagnosed with autism, but they diagnosed him with ADHD. So my main concern is focused because you know, you have to focus in life to be able to get a job and to do a lot of things. So my concern is that it is hard for him to stay focused for a long period of time.
Yeah. Okay. What type of what type of teaching model is he working with? Is he in an integrated class which would be children with special needs and then also typically developing children or is he in a contained classroom? What type of class does he benefit from?
They kind of mix it up for certain part of the day he’s in a campaign what ends people might not talk or have certain issues and be in for a certain amount of time during the day they put him in, in another you know, in a integrated class.
Okay, so he’s mainstreamed with the other children sometimes and then pulled out for certain classes. Yeah, I think that’s that’s pretty much what I’m looking to do for my I have a daughter who has ADHD. She doesn’t have autism, but she was born early. She was born at 30 weeks. So she I’m actually in the process of trying to get the school districts to put her in mainstream except for math and English. So yeah. Is that what your son has he pulls out for for English and math?
We just changed schools, we haven’t done a IEP yet, or any kind of update on him just yet.
They usually do that probably sometime in like October-November to give him a chance to see how he does in the classroom. Then you can always reconvene, and get things assessed later. They might even do their own independent testing at that facility to see where he would need help and support. I’m just wondering if this is what you dealt with, too, concerning not just his performance in school, but making friends. My son was, he still is very, very shy. But he’s kind of like a lone wolf, though. He’s now 23. So he enjoys time by himself. And every once in a while, he spends time with his friends. But back then I remember him being in Cub Scouts. And then I was the T Ball Coach. That was funny. But, you know, I did different things like that to try to get him to socialize. So what type of things work for you in that that area?
Well, we definitely didn’t get a chance to do it this time, because we got down here too late. But we tried to get him in camp for special needs kids, because I noticed like, he’s definitely not shy. People who might not understand what autism is, kids that are not autistic, you know, he might be playing with them. But then they might accuse him of something or, like he’s talking to the staff and they might get upset because they don’t know how to take him and they read it differently because they don’t understand what autism is. But hopefully next year, we can get him back in his camp routine, because I was trying this summer to get in stuff to do to not always sitting around, because you have to reteach him, but he was able to go to summer school for five weeks here.
That’s a lot of times, when children have IEPs. And children with autism, oftentimes, they’re given as a standard procedure, they give them summer school, because I work summer school, over here with children with autism, they give that to them. And then so that way, they don’t regress. And they’ll also give you, they’ll also give you packets of information to work on at home, which is very, very helpful to have. Yeah, so that’s, that’s good to do that. And you know, people need to learn that, you know, because I’m sure there’s going to be listeners who don’t have children on the spectrum, they might have children who are typically developing room, they might have other types of disabilities. But the point is, is that people need to be a little more kind, and caring, and thoughtful, and teach their children to be the same, you know, people are people and you shouldn’t be judgmental, or you should have your child learn to be empathetic towards other children. You know, because it’s important, because, you know, just because a child has autism doesn’t mean they can’t get their feelings hurt. And that’s something I would really I want to make sure people understand that, you know, it’s up to the parents to teach their children to be accepting inviting the child over to play that type thing. You know, it’s, yeah, 2022 I think that people need to be a little bit more concerned about others. It’s my feeling on that.
When you go and try to be nice to somebody, and they’re accusing you of different things, and and it might be a little tough to say we’re finding, you know, because you don’t really, you don’t know that person, you know, you’re getting that plan and having a good time and out of the blue, you know, these things are happening.
Yeah, I think I think another thing is something about when, when a child on Spectrum talks to themselves, that might not necessarily it isn’t necessarily just an autism trait. My daughter has ADHD. She does not she does not have autism. She talks to herself. It’s called self soothing. It’s called self talk. I do it. Like, in the morning up, I gotta make sure I do this. And my son’s like, What are you saying, I’m like, I’m talking to myself. Because sometimes if you say it out loud, it’ll reinforce. That’s why children who are in a classroom, they might have on the board, there might be words or something that they need to look at. Sometimes they’ll repeat the information to themselves. That’s called auditory learning. So when you talk to yourself or someone talks to themselves, they’re trying to either they’re trying To get their thoughts in order, they’re trying to like an on with the children on the spectrum. Sometimes it’s that they’re trying to, you know, self soothe, and hear their own voice and it calms them. So it’s, it’s either that or they’re trying to remember something. Or they’re, you know what I mean, they’re trying to remind themselves something, they have to do it. You know, my son sometimes does that, and my daughter does it. So it’s when you see someone do that, just think to yourself, have I ever done that? And then realize that a lot of people do it. You don’t have to necessarily be on the spectrum to talk to yourself.
Daniel does it constantly, I mean, we’ll be at a restaurant and he could be just going.
Yeah. But, you know, there’s a lot of people in the world who there’s a lot of celebrities that have children are on the spectrum. And, you know, there’s a lot of celebrities who are on the spectrum. So that’s something you should have your child look up so that they can see some of the different people. I’m not going to mention it now. But there’s, there’s many people, you know, we know Temple Grandin. That’s what she said. She said, she has her doctorate in animal husbandry, and she’s famous, but there’s a lot of celebrities that he might know. So that so he can feel more comfortable and realize that, you know, he could go on to do great things. Just yeah, definitely. Does he have any particular strengths that you want to tell us about something an area where he’s just really really does something really well? Or he’s very proud of himself?
Yeah, man. He’s a good talker. You know, a lot of people like him. So he’s real like going, you know, you know, he’s foreign. I mean, he, he definitely has, has a lot of good traits there. And they can just be fine tuned in. You know, yeah, he’s gonna be definitely doing great things.
My son’s amazing at math. I mean, if I need to add something up quick, I say, How much is this? And he just adds it up for me? Like, I mean, I’m not that I’m lousy at math. I always have been. But, yeah, there’s sort of a trait. It’s called savant quality. Any movie years ago, remember that movie Rain Man. Now, do you think that? Do you think that that was a fair representation of a high functioning child or person rather, with autism?
I never check out movies like that. I’m mostly on documentary in sports. If it was in the movies, it probably was not an accurate. Exactly, exactly. It’s like they really don’t have accurate representation of blind people and movies. A lot of times.
Yeah that’s true as well. Yeah, I was just gonna say in the movie, and just summing it up quickly, they had Dustin Hoffman played a man with autism and his brother was talking to Tom Cruise, excuse me. Anyway, the point is, is that they made it seem like he was able to count cards. So they took him to Las Vegas, and you can imagine the rest of it. But the thing is, is that that’s not always true, there isn’t some kind of magic superpower, if you will, that a child with autism has. And then on the opposite end of that, that he was easily set off if he couldn’t watch certain shows show at a certain time. So it was a real stereotype. I’m not I wasn’t too much of a fan of it. Frankly, I guess people who have children on the spectrum, kind of are more hyper aware of that type thing. I think it is, I’m glad that nowadays it’s a little bit more realistic, some of the character the the different people in movies that are represented as having autism are a little more realistic. They just, you know, it’s just, everybody’s different in general, my perspective is, they just look at things a little bit differently. But then if you think about, we all do, we all see things from our own perspective. So it’s, they’re blending in more, in my opinion, from what I’ve seen, they don’t stand out as having these specific traits. And that’s good so that people can accept them. What’s your, interest or thoughts for the future for your son. Like, we are hoping for him?
Do everything I can and along with his care providers, I always pray that you know, along with his care providers, we make the best decisions that will help him and live his best life and you know, and you know, as his parents and we, we do everything we can to make sure he lives his best life and I want him to be able to be independent and have a job and follow his dreams and do whatever it is that he wants to do in life for him. I will be there to support him.
Right, right. And something that I want everyone to understand and to to know there’s a lot of resources out there now, nowadays, and I think I mentioned to you once before, when we were talking that there’s a lot of companies that for example, here in New York, we have a this place right nearby called Access VR. Access VR helps children who have IEP’s is not just children on the spectrum, but lots of children have IEPs, get job placement, job training, they work for companies that are they’re setting up programs that they want these children to come in and be supported. Think they’re given job coaches. So it’s not like years ago, where if you went into a job, you might not be treated so well, they these companies set up programs, so that they can say, to access VR, yeah, we want some people to come over, we want them to interview. So you need to check that out. Because in your area, you should look up on the computer, just look up job placement, children with autism, or, you know, graduates from high school, because that’s going to be a new thing, that people are going to be working in the workforce treated with respect, trained, like typically developing children, and they’re going to have careers that are meaningful, more so in the than in the past.
Absolutely. And for listeners who might not know, also get your child and long term case management, you know, like, talking to case management, because they can go all the way from where the child lives all the way up.
Yep, that’s what that’s that’s what access VR did for my son. Also, something important, any accommodations that are on your child’s IEP, as they’re in high school, junior high, that follows them. So I had mentioned this also is that remember that an IEP is a legal document. And you are with you know, it’s your right to change it, and to make sure it has all the supports that your child needs. And as they graduate high school that goes with then, that IEPfollows them for the rest of their life, if they were to go get their master’s, they get their bachelor’s, they get their PhD, that follows them. The higher educational setting that they’re in is required to adhere to those accommodations. For example, if they get time and a half on a test, they get that as as they’re getting a PhD, they get all these accommodations, don’t downgrade your IEP unless you really feel your child has, you know, met whatever the goals are on there, and that you feel that they don’t need those supports, it’s better to have lots of supports, and then let them drop away as they don’t need them. Rather than take them away too soon, or declassified too soon. That’s something I wanted to make sure people knew. Okay, so in closing, what’s something you would like to tell a family that just learned that their child has been diagnosed as being on the spectrum?
Best thing that I can tell them is try to get as much early intervention as possible, try to get as many resources as possible and as much help and try to gain as much education and knowledge about the disability, or what they have, and try to get, like I say, as much service and as much education, knowledge, health support, as you can, as quick as you can.
Yeah. And if you can get if you have a gut instinct, and it’s even before the the diagnosis, it’s if you have a gut instinct that your child’s not developing and meeting those milestones. Get your pediatrician to recommend a neurological assessment for your child like a neurologist or pediatric neurologist, or wherever they guide you ask them for help to who they might recommend to there might be even like a developmental specialist. Find out when you have that gut instinct, because that will help you start the whole, you know, wheel in motion to help your child.
The sooner the better.
OK well once again, our guest tonight was Curtis Jackson. And his show is called Living the Dream with Curveball that’s his podcast. Take a look for it. Where do they find that? Is that Apple podcasts? Where do you have your podcast?
It’s on your favorite podcast platform. Living the Dream with Curveball podcast or you can go to DJ www.dj curveball.com
Okay, great. Thank you so much for joining us tonight and glad that we had you and I think we had some great topics and hopefully we enlightened some families tonight.
Appreciate it and hopefully something that we say can help somebody.
Great. Great. Allright. Thanks a lot. Curtis.
Check out his website at: