We’re back with Part 2 of Hot Seat Number 7 with TikTok Autism Mom Zulekha Williams. In Part 1 we covered the TikTok Autism Community, diagnostics with my One Page Assessment, and receiving ABA and other autism services in a rural area. Today we discuss “meltdowns” and tantrums”, self-injurious behavior, and some feeding concerns.
What is a “Meltdown”?
Whether you call it a meltdown, tantrum, or something else these problem behaviors can often result in a dangerous and self-injurious activity like hitting, head banging, etc. For Zulekha her son’s as she calls them, meltdowns, are triggered by the loss of use of his tablet (battery dead, game or video not working, access to the internet) and many times at the sight of food, his own meal or even his parents. The behavior that results from these triggers is usually yelling, screaming, hitting, throwing, head banging and more. All lasting as she said more than a couple of minutes. For parents and caregivers, this can be incredibly stressful, but with the right work, these behaviors can get at or near 0 daily occurrences.
Reactionary versus Preventative
We want to spend 95% of our time PREVENTING problem behavior. As it currently stands, Zulekha is struggling with spending more of her time reacting. Because of lack of consistency in autism services like in-home ABA and working virtually with a BCBA, there is no adequate pairing and planning in place to prevent these tantrums. In this episode, I encourage Zulekha to go back and watch my course, No More Time Out where we focus on preventative strategies. For Zulekha’s son’s triggers, she should focus on preventing tablet problems: long chargers, backup tablet if possible, etc. Work on breaking the pattern of problem behaviors BEFORE removing and weaning off tablet time because self-injurious behavior is way more dangerous than screen time. For the feeding triggers, I suggest a feeding evaluation and medical testing, based on a lot of Zulekha’s responses I see concerns for a medical issues related to mouthing and chewing that should be assessed by a pediatrician or functional medicine doctor.
Feeding, Mouthing, and Chewing: Is it Medical?
When you are seeing issues related to feeding, mouthing, drooling, and excessive chewing it is highly likely there is something medically going on. There could be a lack of certain nutrients, disproportionate ratios, etc. As we discuss some of Zulekha’s sons’ excessive picky eating and other concerns, I suggest a feeding evaluation as well as a visit to the pediatrician. Zinc, Copper, Magnesium, Iron, and Lead are just some of the levels that can be tested that may relate to these concerns.
You can check out Zulekha on TikTok for her relatable and honest autism mom content! As well as check out myself, Mary Barbera, on TikTok! We are trying to get the word out to Turn Autism Around for as many children and families as possible, so give a like, comment, and share to help!
Zulekha on the Turn Autism Around Podcast
Zulekha W is a mother to a 4-year-old autistic non-speaking son. Zulekha provides support to parents of autistic children and resources through her TikTok posts. She posts TikTok videos on how she helps her autistic son gain new skills and increase his communication as an AAC learner. Zulekha has a master’s degree in clinical mental health counseling and has taken the courses for parents along with reading the book, Turn Autism Around.
- How to stop reactionary strategies and start preventing problem behavior.
- Identifying and preventing problem behavior triggers.
- How tantrum reactions can make the problems worse and more frequent.
- How to get problem behavior and self-injury to 0 daily occurrences.
- Become the spoiling grandma with your child to prevent self injury.
- When should you seek medical testing for feeding, chewing, and mouthing problems?
- What tests should you ask your pediatrician for?
- Pairing ABA with serious therapy inconsistencies.
- Should you move for more therapy services?
- Mary Barbera Workshops
- No More Time Outs
- The Role of Functional Nutrition and Medicine in Autism
- Assessing a Child with Non-speaking Autism: Hot Seat #7 with Zulekha
- Talk Tools & Speech Therapy for Autism with Mags Kirk
- Pica and Autism: Mouthing of Things in Children
- Zulekha Williams on TikTok
- Mary Barbera
- Mary Barbera on TikTok
- Mary Barbera on Instagram
Zulekha – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 202
How to Deal with Autism Meltdowns: Hot Seat with Zulekha Part 2
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast episode number 202. It's kind of fun to say. Anyway, this week we're doing part two with Zulekha Williams all about her son Maddox and this week we are talking about his severe problem behaviors including self-injurious behavior and aggression. Also her struggles to find schools and programs, ABA providers in rural areas, and her desire to actually move for better services. So we talk about all of this in part two. Let's get to this important episode with Zulekha Williams.
Narrator: Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst, and bestselling author Dr. Mary Barbera.
Mary: So let's talk about his self-injury and his tantrums and his meltdowns. Whenever you say meltdowns or tantrums....
Zulekha: Oh there's a difference with Maddox.
Mary: Well, whatever you call it, because people call it different things. Like I rarely use the word meltdown. I use the word tantrums. But even as a behavior analyst, that's not technically that great of a term. But whenever we use whatever word, problem behavior, meltdown, tantrum, whatever. So I need to know, what does that look like? What behaviors does he exhibit during? Whatever...a meltdown.
Autism Meltdowns, Tantrums, and Self-Injurious Behavior
Zulekha: Okay. So for a meltdown with Maddox, it will sometimes and can last up to 30 minutes an hour. I'm going to be very honest. And he will initially, let's say his tablet so his last meltdown. Let's talk about that one. His tablet died because there's issues with his tablet, not his AAC talker that's on his iPad, but his different tablet for his gaming and watching YouTube, Super simple songs and stuff like that. So it died. He throws it or he'll start hitting himself on the head repeatedly and then he'll throw it and then he'll turn to me if I'm right next to him, and he'll start trying to hit me, kick me or his little brother or whoever is next to him. And then I move away. Then Maddox flops to the floor and he's laying on the floor, just kicking his legs up and down like this a bunch of times. And he jumps up and he throws everything he can throw. Sometimes I feel like he would throw me if he could because he tries. So he's running all over the house, screaming, crying, and then you try to pick him up like this and he goes to you, but like is almost to you and then completely falls to the ground again and starts kicking and throwing and running around the house screaming. So for us, that's a meltdown for Maddox. When I'm trying to console him, I can't console him.
Mary: And how often does that happen?
Zulekha: Oh, a lot right now. So right now it's happening. He had this tablet a lot during COVID when he was sick. So he's having a hard time breaking away from that. So his meltdowns have gone up a lot. I would say yesterday. Maddox probably had at least eight or nine meltdowns, and that's a lot for me. I'm sorry. I know some kids have more, but I would say he probably had about eight of them yesterday.
Mary: And they all lasted multiple minutes.
Zulekha: Yes. Yes. More than a minute, more than a couple of minutes, we'll learn what will help melt down. Sometimes deep pressure will help him, but that's after he calmed down or these lights...
Mary: What turns it off?
Zulekha: What turns it off is if it's. If this game will work, that'll turn it off sometimes. Or he'll keep going for a while and then calm down. Or I will just sit next to him and if I talk, that's a trigger for him during a meltdown. So, you know, if I try to console him by talking with words, I try to not talk as much as possible. So for me, staying calm, that helps a ton. If I get upset, which I'm a human, sometimes I get upset because I'm trying to move his little brother out of the way and I'm like, Oh my gosh, how can we get through this? And that's too much talking for Maddox. So just me staying really calm helps the most. And or if I happen to get something on YouTube really quick that shows all the flashing lights that calms down because then he's just like so amazed with these lights, just just lights flashing on the screen so something like that will calm down or it happened in the store when we were in Las Vegas with my mom. And I had to completely pick him up and carry him to the car. And that calmed him down just to be out of the environment. So an environment change can help as well, too.
Mary: Yeah. So give me an example of something that triggers a meltdown that's not related to an iPad or tablet.
Zulekha: Food. So since Maddox has done this thing with food, since he's probably 18 months old, if I sit down to eat and start eating, Maddox gets upset about that. Like he doesn't want to watch me or see me eat. And it's only me and his dad. He's okay with his brother eating. And that's gone down a lot recently, maybe in the past year. But to see me eat sometimes he gets very upset. Extremely upset.
Mary: Oh, and he's not eating? Or does he have a plate of food?
Zulekha: He has a plate of food too. So even sometimes for him just to see food. Like I walk in, say to his little kids table yesterday I brought him a sandwich and I brought his little brother like eggs. And because his little brother likes a lot of different food and I put them both down on the little kids table and Maddox looked at both of the plates and he threw his tablet and started crying. So just to see food as well, to upset him, unless it's like a bag of chips that won't make him cry. But when it's a meal that upsets Maddox to see it. Not all the time, but I would say a lot of the time, maybe 70% of the time, just to see a meal coming, he gets upset about it.
Mary: Very strange.
Zulekha: That's what his therapist said.
Mary: Is his height and weight okay? Is he growing normally?
Zulekha: He's growing normally. But Maddox didn't gain weight for probably almost a year. He just started gaining weight recently. Like he doesn't have failure to thrive or anything like that. He's just put on a couple of pounds this year, but for a year he put on no weight.
Mary: So I heard you say something. And when we were doing the assessment about Pediasure, did you use Pediasure?
Zulekha: Pediasure has helped a lot to help him to gain weight. I personally noticed. And because then I will do stuff like put some eggs in a Pediasure and blend it up and he'll drink the eggs with the Pediasure, he can't tell for some reason, and I love it, but Pediasure helps. I personally don't want to keep giving him Pediasure, though.
Feeding Evaluation: Are There Medical Concerns?
Mary: Yeah. See? I really do think that a feeding evaluation, not just a person coming into your house, but like at a clinic, a feeding evaluation, even with the whole mouthing and sucking on his hands and drooling like that. The fact that he's so extremely picky and those sorts of things, it really does make me concerned that there's a medical, you know, issue. I did a podcast with a functional medicine nutritionist, like a functional medicine physician who specializes in autism might be helpful because the whole pediasure, if you're giving him pediasure twice a day to like slip things in and to get his vitamins in and that sort of thing, that's not a good long term solution. So raw eggs are probably, you're not cooking the eggs. You're putting them in raw?
Zulekha: No, I actually cook them.
Mary: Oh, you cook them and just blend them in? Yeah. So that's okay. I was like, uhhh don't do raw eggs!!
Zulekha: Yeah I don't do raw eggs!
Mary: Yeah that would be gross and I don't think it would be safe either. But you know, slipping things in and feeding kids just to kind of gain weight or provide nutrition isn't really the best because they need to get hungry and then they need to eat. And so if he's grazing throughout the day, if he's filling up with a pediasure, you know, within an hour or two of a meal, he's not going to you know, maybe some of the reason that he threw his tablet when he saw a meal was because the meal signifies that we're putting the tablet away.
Zulekha: I pair the tablet with a meal. So that was why he and I initially gave him his tablet because I knew I was bringing a meal out. Oh, okay.
Mary: Yeah. It sounds like he's having really pretty significant problem behaviors. So you said it got worse because he had COVID recently.
Zulekha: He had COVID, which means he got his tablet a lot more because we all got COVID. So it was hard for me to just, you know, I'm sick and I'm trying to take care of everyone at the same time. So I gave him his tablet. So that way I can try to heal as well, too.
Mary: Right. Right. So is he having these kinds of meltdowns with his ABA therapist when you're not home or not?
Zulekha: I'm always home with him, with ABA, because I don't want it to go too far. Not that.... She's great, by the way. I don't have anything bad to say about her, but I know how Maddox is, and I can calm him down quicker than his ABA therapist. So that's why I try to stay in the room. But I want to pull apart as well too. But yeah, he has them. And then we stop. Because he's not going to learn anything if he's crying and upset. So we stop and we do something else. We go outside or run around. He likes to just run around, so I taught him to play tag. So we'll play tag for a little while. That way he can run and get some energy out.
Mary: Yeah, so does he also, in addition to this person that comes from 5 hours a day, he has a behavior analyst, right?
Zulekha: Yes, he does.
Mary: And how often does that person come?
Zulekha: Once a week, sometimes and usually through Zoom.
Mary: So not in person.
Zulekha: Not in person. He might come in person maybe once a month. So not often. And the thing with ABA is well, too, because we're so secluded on this mountain, Maddox's gone through four ABA therapists since he started in January. So when someone quits or does whatever gets put on a leave, then Maddox goes two months without having ABA. He just went two months without, seven weeks without having ABA. He just started ABA again last Monday.
Mary: He went seven months without ABA?
Zulekha: Seven weeks.
Mary: Oh seven weeks.
Zulekha: Yeah, seven weeks. So in between each therapist at least a month. And then he has someone new.
Mary: And the therapist has to pair, and has no idea what to do. Wow.
Zulekha: And usually it's a new therapist, who's it's just they're very first. Maddox is their very first person ever.
Reactionary versus Preventative Strategies:
Mary: Okay. So it sounds like you're really having a hard time transitioning to people, to activities. One of the things I'm hearing and you're just trying to survive. You're just trying to calm it down as quickly as possible. And so he can get on to learning, which is totally normal. But I hear a lot of you're trying to calm him down at the moment and you're needing to use all these reactions: deep pressure, bringing him out of the store, bringing him outside from ABA therapy. And those changes in the environment and what you're doing just you're really finding it hard not to use these reactionary strategies. But what he's learning is if I throw my tablet and start hitting and running around. Then I get better things. Then mom's phone comes out, I get deep pressure. I get to go in the backyard and run around. So I have this in both my books. So if I gave you $1,000, the therapist is coming today, I give you $1,000. For Maddox to have no meltdowns today or even for half the session. What would you do?
Zulekha: For $1,000 for him to not have any meltdowns? He would have his tablet the whole entire day.
Mary: Okay, but he might still have meltdowns because the tablet may break or he may get bored or. Yeah, you're going to have to feed him something. Right.
Zulekha: So if, say, the battery dies on the tablet and then he does have a meltdown, I would maybe have a favorite book ready because he loves books or start singing to him. He loves music. He loves songs. What else is there?
Mary: That like music and songs, is song time built into ABA therapy?
Zulekha: Yes, it is.
Mary: Book time?
Zulekha: We call it Circle Time because at school they have Circle Time and that's what they do at school. So we're trying to help him in the school setting as well, too, by having circle time at home. So watching some, like I said, earlier, happy you know it clap your hands or different super simple types of songs he loves those that will do. Usually like three or four songs in a session.
Mary: Okay. So part of my course and everything I preach is spend 95% of your time preventing problem behaviors, which it sounds like it's a tough situation because you want to get out of being there constantly, but. You keep having changeover staff.
Zulekha: Exactly. And I'm trying to go back to work, too. And right now it's seeming impossible right now.
Mary: So I know you don't have time to watch my course. But you left, which, you know, a lot of people do. And I was telling you beforehand, like you recently came back, but we used to have a pretty clunky transition from the toddler course to the verbal behavior bundle. We changed everything about that. It is so much smoother. The community is completely positive. You know, you stay for a year or month to month, but very low priced like 2015 pricing. Anybody out there listening that used to be in the course or courses and left probably because they got busy like you and they, you know, they have ABA and like, why would I need to still be a part of the community, we really urge all parents and professionals to email us at [email protected] if you've ever been in the course we are still offering 2015 pricing right now for a limited time to come back. But I really do think, Zulekha, that you did well with the toddler course he was learning, you know, and I do believe that some of the answers in the course are in there, we have a mini course. So you have access to the course now, it's called No More Time Out, but we're actually changing the name because it really is just preventative, positive and then reactionary strategies that you should use. And so it's going to be called Turn Tantrums Around because really it isn't about time out because most moms like you and I aren't really using time out. We're just trying to get through the day.
Mary: I think the videos in there and that and it's only an hour and a half. So I would say that my first step is to watch that course. I would also look at those chewing and mouthing video blogs, see if you can schedule some kind of evaluation, look at the food lists. And maybe instead of just bringing out a sandwich, you bring out a very small sandwich with some chips and some other easy foods and or maybe just serve him easy foods, like the foods you listed that he would eat pizza, you know, this that, you know, serve him easy foods. If you think that might help prevent a meltdown, that's all about it. You know, think every day if I get $1,000, what would I do? So for now, you are going to unfortunately have to stay in therapy with the new therapist and pair up things. And I would even though I'm against moving for most people, you know, picking up and moving isn't necessarily the answer. I do think that you will benefit more from a structured, potentially in clinic, in school. But that BCBA and that therapist has to be highly trained has to believe and use the VB-mapp not just for an assessment for programing they need to believe in my approach, the turn autism around approach and believe in preventing problem behaviors. And I really do think that it's a critical time for you to get the support needed because he is suffering if he's having this many meltdowns. And then when he does have a meltdown, if he's hitting you or hitting his brother or hitting himself, hitting, you know, take weapons out of his hands, keep him safe, don't let him bang his head. Don't leave him alone. Protect his head like his life depends on it. Because you do not want him banging and you don't want him to be aggressive. You know, if there is a soft area where you could take him and at this point he's small enough that you can carry him and get him to a safe environment. Most places that's not going to be the case for very much longer.
Zulekha: So I noticed too when he started school, he started school August 1st. That's when a lot of his behaviors escalated when he went back to school. So we're right now thinking of not doing school anymore because where we live, it's like they have a 1 to 1, but they have lack of staffing. So that way his 1 to 1 isn't always being used just for him. You know, she's being pulled everywhere else. So even just the look on their faces when I pick him up, they look stressed out. And even his teacher asked me, she's a first time teacher, you know, bless her heart, she was a teacher's aide last year. She's still going to school right now. His whole entire staff changed. He loved preschool last year, absolutely loved it. But this year he gets so upset just to even see his school. So I don't really feel like school, he's only four. But yeah, I don't feel like it's very beneficial for him, at least in that classroom. And I had a conversation with his principal and his principal agreed. You know, maybe one of the other schools in the district off of the mountain would be better for Maddox because they do have more experience. So we're going through that as well too. So yeah.
Mary: Yeah. I wouldn't take him places where he's throwing a fit to get there. If he's having major problem behaviors, if he's banging his head, being aggressive.
Zulekha: He is banging his head there too. That's the thing.
Mary: Right. And, you know, and I feel like this whole podcast is now like I'm giving you so many things and I feel like it's so stressful what you're saying. What I'm saying. I mean, there's so many facets to it.
Should You Move For Autism Services?
Mary: But I do think that he's communicating that he needs a different situation. You know, fragmenting school versus ABA versus feeding versus OT versus this is what happens. People get different advice. And unless you have a very systematic behavioral program in place. It's going to be hard to turn it around.
Zulekha: Right. Which we don't, because things keep changing with him, with his ABA and his whole school staff changed when he was loving school. So it's like, yeah, like I said, all the problem behaviors escalated when school started. And then after he got COVID and then, you know, new therapist again, it's like there's no consistency other than mommy and daddy and little brother. But everything else is so inconsistent for him right now. So it's hard and it's hard for us as a family, too. I'm trying to be as transparent as possible. This is our life right now. As things change, it gets worse for Maddox and then his little brother, us as a family unit in whole. So we want the best, the best, the best for him, of course, as any parent would.
Mary: Right. Right. Well, I do think I know that you had sent in another question, like, how can you prepare for like teenage years or adulthood or whatever? I think right this second, you should just focus on him being four, him having severe problem behaviors, him having very limited communication skills and early learner skills and use this year, two years when you are going to still have a lot more input than you will when you school age, unless you decide to homeschool him with support or keep him in full time ABA. I would really look at where you can move, where it has the best services. When I tell people to go look for people that embrace my approach. It's very limited right now. But you can find providers who do not just use the assessment, the VB-Mapp assessment as a one time every six month gauge, but actually set goals from that, set programs from that. Maybe they have a multidisciplinary team where they would have a Feeding ABA component and they would have speech that was also very knowledgeable about ABA and they would have OT that was also being supported. And find somewhere that is going to work for your family. And that's I mean, I wasn't expecting when we began this episode to be like, okay, just move and it's not going to solve everything. I think there's a lot you can do before you move. And for you listening that is like, I can't move. I mean, I'm in a situation where this is where I grew up. This is, you know, and so that's...
Zulekha: And that's us right now. We can't move right now. You know, maybe we're trying to move as soon as we can, but moving costs, we can't just up and move right now. I have to help Maddox, you know, be somewhat happier in ABA and then I need to go back to work so that way we can move. So it's not something that can just happen immediately. It takes time.
Mary: Yeah. So for now, I mean, maybe you could work with your ABA provider to be more involved. Maybe you could hire somebody, maybe a friend, you know, college student, you know, daughter, or maybe you know somebody you can go on care.com and hire and feel good about. Maybe there's a babysitter that could transition into being his ABA therapist and get trained. You know what I mean? Like, maybe there is somebody some way where you need a consistent person not changing all the time. And I feel like you need a behavior analyst who is going to come in person and also be positive.
Zulekha: How often should a BCBA come?
Mary: I don't know what is provided like how many hours and that sort of thing, but I do think that meeting on Zoom isn't ideal and I also think that it doesn't even matter if it's a BCBA or not. The person that is working with your son should really know how to apply all the techniques you learned in the toddler course, all the techniques that are in the baby bundle. It's not just a matter of whether I got ABA or have a BCBA. I have friends that do distance consulting on Zoom and I mean all my stuff is online. We've never met in person and we may never, but that doesn't mean it's not helpful. It's just we have to get back to that 95% preventative model. We need to look at his medical issues, if there are any, that's causing chewing and drooling and picky eating and self-injurious and obsessiveness.
Zulekha: We did have his neurologist run his blood work recently. Maybe two, three weeks ago. So very recently. But what he looked at was more so his vitamins and nutrients, is he anemic? You know, things like that. Because I took Maddox to the pediatric ER and I said my son is pale. He keeps getting pale and to me he's still pale. So that's why I keep thinking in my head. What is he lacking? He must be lacking something. There is something else going on that we're not knowledgeable of or aware of. So yeah, it's hard. You know, it's hard as a parent when your child hardly wants to eat or is so incredibly picky and you can't always get the right things into them. And then, you know, things change with school and then what is he really doing at school? You know, everything in me says this is his last week of school and maybe this is his last day of school because I don't know what they're doing at school, even though he says, yeah, when you leave, he doesn't cry anymore. I don't believe that.
Mary: Do they give you communication? Like if he hit his head?
Zulekha: There's an app that they communicate with. And once since he started school, I've been sent one picture where he's smiling. But that's about it. They send home the sheets where they just check stuff off or circle things, you know, use the bathroom, pull down his pants or like art or, you know, just stuff like that. But it's not like detailed communication. I communicate thoroughly with them. Each time something like this has happened to him, I email it straight to the principal because I want him to know this is what's going on in this school. You know, there is something that is not right, especially something is not right. The entire staff changed this year. What's going on with that? So I don't yeah. Maddox is not going to go to school anymore. At least right now. At least right now we're taking him out because I don't know what's going on. And if he's getting so upset about school, that's not what he did last year. And so many of us parents are going through the same thing. Should we keep our kid in school right now or should we take them out and just homeschool them? Yeah, we're just going to homeschool for right now until we figure out what's next.
Mary: Yeah, well, and one of the things you could look at, and I think I saw in your TikTok that you work with an IEP coach or specialist is not to just withdraw him but to put in writing that he needs home services he needs. Why not just withdraw home and do it yourself?
Zulekha: I think she called it homebound or?
Mary: He needs, you know, coordination with your ABA provider and those sorts of things like especially since you're not moving, you know, tomorrow or next month or in the next couple of months, you know, you want to get him calmer and your goal, my goal for him would be zero major problem behaviors.
Zulekha: Right mine too.
Mary: Problem behaviors at or near zero and be as safe, as independent and as happy as possible. Those are my goals for every child. And I wouldn't stop until you get them there. Not to say that, you know, just a few days ago, my son had self-injurious behavior. We have a calendar. We mark that in the calendar or in the regular calendar. he also has a rash. Is that some kind of impetigo? It is hurting. He told me that, you know, like it is due for an allergy shot, like I am on it. It's like one pops out and I am on it. We're going to get that back to zero. You know what I mean? So you're like far away from zero, but know that that is a possibility and that should be the goal. And you are an incredible teacher and advocate for your son. And you can do it.
Zulekha: We can all do it.
Mary: Just know that, you know, it is a tough time. You are back in the course. You just got back on the course and community. So I gave you some ideas. I know the time is hard for you to piece together when you can actually watch it, put it on double speed.
Zulekha: To watch it very soon, as soon as you put it out. So I can take some notes and say, okay, this is what she did.
Mary: And then. You know, I think you're really doing a very good job of trying to hold everything together and trying to do what's best for him. So I never think like, oh, don't even think about when he's 14 or at least 24, think about right now and trying to help your son get those major problem behaviors down, maybe not to zero at this point, but maybe, you know, think of that thousand dollar day, like be the spoiling grandma, be the one who's going to bring the food he likes, have a regular schedule, very long cord to charge his tablet. Have a schedule where that tablet gets charge every single night while he's sleeping, you know, like. Prevent. Maybe have an extra tablet, maybe have an extra device that's always charging. Like, I know that seems like...
Zulekha: You know, I don't want him to be on his tablet all the time, but I don't want him to hurt himself.
Mary: Hurting himself is going to really impact him much more than being on the tablet. So you can't go from 100 to 0, right? For now. Thousand dollars to knock down the problem here. So now you've got to get him comfortable, calm, not throwing tantrums. Forget about hitting my head as an object and forget about throwing stuff as an option. Forget about hitting people as an option. Like to get him calm. And then once it's calm, your reinforcement is super high, your demands are super low. Now he's in a calm state for a day or two or three. Now we can even slightly start setting visual timers. We can start, you know, doing okay, a visual schedule, maybe song time and then the iPad and then paired together, you know, like you kind of have to just when we see problem behaviors, demands are too high or reinforcements too low. So we just swap that make reinforcements super high our thousand dollar day and demands really low and then we start inching it back. And in the meantime, as you do that, try to make time to watch some of these things that I'm recommending and to make some phone calls.
Medical Testing with the Pediatrician:
Zulekha: And I do have a question, though, too, before we are done, because myself and a lot of parents are going through similar things. So specifically in regards to his mouthing and his chewing and, you know, chewing on his shirt, when we call our pediatricians and go into these appointments, what specific maybe test do you suggest we ask for or if you've heard we should ask for? Because sometimes, you know, pediatricians were. Well, I don't know. Well, what do you think we should do? So what is your advice on that when we walk into these pediatrician offices?
Mary: Well. I am not 100% sure. When Lucas was chewing, I didn't know any of this. Right. I would definitely look at the zinc level, Magnesium level, and copper level. There is some stuff about the zinc to copper ratio, which is abnormal in kids with autism. So a lot of kids need zinc supplementation. I did a show with Missy Olive where we talked about that you can Google zinc to copper ratio and autistic kids, but you can't get a test for the zinc to copper ratio. You get a test that does zinc levels and a test that does copper levels. And then more cases than not, it's the zinc that needs supplementation and you need to avoid copper. Like somewhere I think it was our medications and supplements good for kids or bad for kids. And I give the example of when Lucas was like probably Maddox is ages or maybe a little older. I wanted to get nutrition. And so I gave him a multivitamin, not realizing that the multivitamin had copper in it.
Zulekha: I saw that video.
Mary: And so copper is very bad for Lucas. And within like 20 minutes of giving him a multivitamin crushed up because he wouldn't take it, he would freak out. And I'm like, what is going on? And so I put my registered nurse hat on and then I, you know, and I was like literally chasing my tail for many years. So it's not just about what tests should be ordered. It's about doing the assessment. How much does he chew? Does he chew on mulch, which is more like pica? Is it the chewing on shirts? Are his shirts extra big so he can get it up to his mouth easily? Maybe put them in smaller shirts or shirts with no sleeves if he's chewing on his sleeves. And it's not it doesn't have to be an all or nothing. You don't have to throw the chewies away. I wouldn't do that because if he's chewing on dangerous things, chewing on chewies is better.
Zulekha: Yeah. Yeah.
Mary: So I guess everything I'm saying here isn't like this is exactly what you have to do. This is just one of the things to think about. Yeah.
Zulekha: Yeah. No, this is great. Thank you.
Mary: Actually chewing, drooling, talking, feeding. It's all the same muscles. I did a show with Mags Kirk, who's an SLP, BCBA on talk tools, which is like biting, chewing, swallowing. If I had a four year old non-speaking child, I would definitely be looking into that as well. But, you know, there's only so much you can do. Right. And even if money were no object, time would certainly be an object and waiting lists and information. But, you know, listening to Mags Kirk's podcast, exploring mouthing and chewing, maybe getting zinc and magnesium and copper. And there may be others like I look at the lead level, I would look at the iron level, I would look at those sorts of things and those can be done. And a lot of pediatricians are looking for things like, what test are you wanting? And that's where a functional medicine doctor might be needed. But again, that might not be included with insurance and all that stuff. And we do need to wrap up. This is probably going to be our longest podcast ever. Maybe we'll even break it in two, who knows.
Zulekha: I have to take advantage of you since I get to talk to you.
Mary: We could do a weekly show, right? Talking about all these issues, I mean, you are doing a great job because it is complex and every child out there is complex, but they are holding it together and trying.
Zulekha: I'm trying!
Mary: Flying trying. So before I let you go, people can find you at Zulekha Williams on TikTok.
Mary: Z u l e k h a I mean, all of these are in the show notes which are going to be super long. And before I let you go, part of my podcast goals are to help parents and professionals be less stressed and lead happier lives. So we just talked about your incredible stress levels. What do you do for yourself to kind of just try to reduce your stress?
Zulekha: Oh, not enough... nothing. That's a heated topic with me and I'm very transparent. If anyone goes to my TikTok, I'll be very honest about our life. So this is something that me and my husband have an issue with right now. I'm not going to lie. Is him giving me time to break away so that I can come back more put together. So maybe every once a month or every two weeks he will keep the boys. So that way I can just go away and I just drive away, you know? And we live in the mountains, so drive into town, maybe go to Starbucks, maybe take myself to lunch, or just go sit at the lake. That's what I do. And what helped me the most was when I was working out all the time, so I would like to get back into that. Working out helps me feel phenomenal. So that's something I need to go back to. So yeah, that's what I'm trying to do. Not always doing it enough, but I'm trying.
Mary: Yes, well, you're a very positive person and I think you and your whole family are going to do fine. It's just a tough time right now, so I'm wishing you all the best. I look forward to seeing you in our community participating. If anybody there is listening and wants to come back, email us at [email protected] and we will get you back hooked up in our community and our courses and our bonuses and wishing you all the best of luck. Have a great one.
Zulekha: Thank you. You too. Have a good one.
Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.
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