This is hot Seat Number 7, featuring Zulekha Williams. In this Part 1 episode, Zulekha joins me to discuss her 4-year-old autistic non-speaking son. Living in a rural area, Zulekha and her family face many barriers when it comes to receiving early intervention services. Her son currently receives 40 hours of in-home ABA a week as well and works with an AAC device.
Autism TikTok Moms
My listeners know that this spring I joined TikTok and since then I have learned about the amazing autism community on that platform. I’ve had two other guests in the last few months from TikTok and I actually met Zulekha on TikTok as well. Zulekha is a mental health professional, who has read my book and taken my courses. She uses TikTok to share her journey and support other autism families as well. She uses TikTok to collaborate and share with professionals of all kinds in the autism field, including previous Turn Autism Around guest, Doc Sarah Nicole.
Assessment for Autism
As of October 2022, I have just released a digital software version of my One Page Assessment available for FREE to the first 1000 users. Zulekha and I go over some questions and key information that you will find in the paper and digital copy of this assessment. Zulekha’s son has a severe diagnosis and at 4 years old is working on potty training, beginning to try utensils, dealing with picky eating, and participating in excessive chewing. She also notes that she has several severe safety concerns for her son as well. We refer back to some previous shows and discuss important tips for working on these important skills.
Because of Zulekha’s and her family’s mountain location, an ABA provider works with her son at home. This brings on challenges of the younger brother wanting to be involved, and herself wanting to break away and give her son independence with the provider. Zulekha also discusses activities that her son has become familiar and bored with. I provide suggestions on how to expand these activities as well as pair the provider and the child so that the mom doesn’t need to be present for services.
Stay tuned for Part 2 of this episode where Zulekha and I dive into safety concerns for self-injurious and problem behavior.
Zulekha on the Turn Autism Around Podcast
Zulekha W is a mother to a 4year 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.
- The impact of the Autism TikTok Community.
- Receiving Autism Services and ABA in Rural Area.
- Reviewing Key Questions and information from the One Page Assessment.
- Important Potty Training Tips for Young Boys with Autism.
- Is your child constipated?
- Can excessive chewing and drooling be a medical concern?
- Expanding on basic activities like Mr. Potato Head and Inset Puzzles in ABA.
- Handling meltdowns and pairing in home ABA providers.
- Diagnosing Autism During COVID19 Pandemic | Interview with Dr. Catherine Lord
- Autism TikTok- Parenting Without Power Struggles with @thefamilybehaviorist
- Turn Autism Around, Online Autism Assessment: Try It Now!
- Autism Success Story with Michele C.
- Autism Case Study with Michelle C : From 2 Words to 500 Words with ABA Online Course
- In Home ABA Therapy vs. ABA School: Which is Better?
- A Story of Hope: Reducing Autism Self Injury, Autism Homeschooling, and Lessons Learned with Kelsey General
- Solving Speech Delays in 4-year-olds and Autism Denial: Hot Seat #6 with Vikram
- Programming for Intermediate Learners: Hot Seat with Swethana
- How To Help Your Toddler Talk! Hot Seat #4 with Elissa
- Does Your Young Child Have Autism or Signs of Autism? Take the 10 Minute Assessment!
- Navigating Autism : Failed M-Chat Score, Toddler Headbanging, and Parent Led Therapy with Kelsey General
- Potty Training and Constipation with Dr. Steve Hodges
- Should You Use Chew Toys for Kids with Autism?
- Pica and Autism: Mouthing of Things in Children
- Mary Barbera on Facebook
- Mary Barbera on TikTok
- Mary Barbera on Instagram
Zulekha – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 201
Assessing a Child with Non-speaking Autism: Hot Seat #7 with Zulekha
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast, which is part one. It is episode number 201. I decided to make this a two part podcast with the same guest, Zulekha Williams, who I found on TikTok a while back. And Zulekha is the mom of a four year old boy. The reason we split it is because it really has two chunks. The first episode, the first chunk is going to be episode 201, is all about Zulekha. Her fall into the autism world. My finding her on TikTok and some of the struggles that her son has with language. And then next week, we are going to have part two, which is going to be episode 202 with Zulekha Williams talking about her son, Maddox's severe self-injurious behavior and aggression and all the problem behaviors she has and also her services and how it's hard to coordinate. It's hard for her as a parent to juggle all the things he needs when he's having problem behaviors and trying to figure out what he needs most. So let's get to part one with Zulekha Williams Episode 201.
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: Okay, Zulekha, I am so thrilled to meet you today and have you on the podcast.
Zulekha: Thank you for having me. It's been a dream to be on one of your podcasts.
Mary: Well, that's great. I know you. You told me just now that you listened to a bunch of podcasts in the past. So glad to have an avid listener here to share your story and to, you know, we're going to talk about Zulekha's story and then we're going to move into self-injurious behaviors, tantrums, meltdowns, and kind of do a mini hot seat towards the middle and the end of this. So. But first, why don't you tell listeners about your fall into the autism world?
Zulekha’s Fall into the Autism World:
Zulekha: So I have a four year old. He is autistic, non speaking. And we saw signs of autism when he was honestly a baby. There's things he didn't do. He didn't smile. He didn't walk. He didn't he didn't crawl until after he learned to walk. And he learned to walk at 17 months old. So at such a later time and then at two years old, he was diagnosed with sensory processing disorder, which even then we felt like, no, we feel like he has autism, but this was during COVID. So he was diagnosed through Zoom, which through Zoom, you can't see everything, as we all know. And then he wasn't diagnosed with autism until he turned three years old. And that's actually when I found you as well online while researching How Can I Help My Son? Because I have a master's degree in clinical mental health counseling, but at the same time, I don't have a specific scope or, you know, zoomed in, dialed into autism. So this was new to me. I knew about it but I didn't ever work with, you know, a bunch of people who were autistic. So I found you, you know, through searching, I took your online course, learned a bunch. I love table time, Mr. Potato Head. So I started doing stuff like that with him, you know, at least two or three times a day, which we saw improvements just from that. So we fell into the autism world with our son. You know, he's now four years old. He does have self injurious behaviors. With his head and face and being on the walls, the floor, which is hard to see as a parent. And at the same time, he is an AAC learner. So he's learning to talk through using an iPad. And then he also has his younger brother, who's 20 month old, who's a 20 month old, who is a great model for him, to be honest. So that's how we came into the autism world.
Mary: Right? Right. Well, that sounds great. And we did an interview with Dr. Catherine Lord, one of the really internationally known researchers in the field of autism. And she is big on diagnosis. And so we did an interview about the problems with diagnosing during COVID and the waiting list got a lot worse. So we can link Catherine Lord's podcast interview in your show notes. And I mean, we had so many parents join us during COVID because their evaluations were canceled. They were doing Zoom evaluations. Kids were home from daycare and preschool. One of our really best interviews was with Michelle C, who joined during COVID. We can link her two podcasts in the show notes. So yeah, and that whole sensory processing disorder diagnosis and you know, it's, it's like these techniques work no matter if it's sensory processing, if it's a speech delay, if it's early signs of ADHD, early signs of autism. But when you see a two year old who is having signs of ADHD, sensory processing issues, excessive tantrums, and then probably not pointing and things like that, it really doesn't do any child any good to just slap these different diagnoses on them without autism. Because I know you're out in California. I mean, did anybody suggest, like the regional centers out there.
Diagnosis and Early Intervention
Zulekha: Yeah so he is with IRC. That was not suggested in the beginning. However, I did know of IRC, I think I learned about IRC when he was almost three years old. So that's when I started the process to get them fully into IRX.
Mary: And IRC is...
Zulekha: Oh I'm sorry, Inland Regional Center. So California, we have regional centers and with regional centers from 0 to 3 years old, you can do early intervention. But by the time he was fully enrolled, it was after he turned three. So that early intervention aspect came out and he wasn't able to do that. So he is with Inland Regional Center right now, which helps a lot. Like we're considering moving because we have a lack of services right now where we live, we live in the mountains. And for him to just get speech and occupational therapy, feeding therapy, we have to drive over an hour away driving down a winding mountain road. So he throws up. He doesn't do good with that either. So we have to move for our son. So that way we can get into a bigger city and get him the services that he needs.
Mary: Wow. Yeah, that's really tough. And for Lucas, he was diagnosed with autism one day before he turned three. And that transition from birth to three services is part see on, you know, the federal law and then going to 3 to 5, which is part B, it's a huge issue. Even if you get the diagnosis a month or two before three, the transition is really, really tough. And that's why I just am spending my whole life really trying to get to the parents because there's so much you can do. I mean, I found you on Tik Tok, which you're my third guest that I found on Tik Tok that I didn't know about in the past couple of months. And so you're on Tik Tok. And I saw you posting about the shoe box program and those sorts of things. So we reached out. We're like, Oh, she looks like she may have taken the course. And of course you did. And you were very positive about the course and the book. And, you know, we found you there, but we can link the other two podcast guests that I had from Tik Tok, Mandy Grass and Doc Sarah Nicole. They're both behavioral analysts and I know as a mental health counselor, Zulekha, you have a pretty good mix of professionals and parents on your TikTok.
Mary: Yes. So I didn't even know much about Tik Tok until last year, so I just joined it this year in January. And it's so nice to be in a community where there's all of these parents going through similar things and we could bounce resources off of one another. There's special education teachers. I'm friends with principals, psychologists, Doc Sarah Nicole as well too. I love her. We duet each other a lot. Yeah.
Mary: It's nice what we found out about her because Mandy Grass, who's a behavioral analyst, has a duet or tagging, you know, situation going with Dr. Sarah Nicole. And it's amazing. It's like I had a lot of hesitancy about joining TikTok and I only got on the platform in May, in late May. But, you know, just meeting people like you and it really is a pretty positive environment.
Mary: For people like me who live in a mountain community or say even if I lived in the city and I go to these parks or I go to these community events and I don't see other parents with kids who are autistic. So it's a big difference, like the way in which they view me and the way in which we talk to each other. We get invited to maybe playgroups, and then all of a sudden I'm not invited anymore because my son is autistic and they don't say anything to me, they just completely cancel me out. So then to come on TikTok, it's this community too, where I feel welcome. I can talk about what happened earlier in the day and everyone understands as opposed to being, you know, going to the grocery store and no one understands. So TikTok is a great platform for that. Yeah. Just for the love and support.
Autism Services and ABA in a Rural Area
Mary: Yeah. So your son is getting ABA services now?
Zulekha: Yes. Yes. So he started ABA services in January of this year. Actually, 2022 took about six months to get him into ABA because of where we live in the waiting list. But yeah, once he started ABA, we immediately started PEX and maybe like a month later and he was doing so great with PEX. And then from there we moved on to an AAC maybe a month and a half later. And yeah, ABA is helping tremendously.
Mary: Does he go to a clinic or do people come into your home?
Zulekha: Where we live we do not have a clinic for ABA whatsoever. So they come to our home right now.
Mary: That's nice. Yeah. So I did a video blog, a pretty lengthy one on the differences and the pros and cons of home versus school ABA and clinic ABA. And there are people listening from literally all over the world. And so there's people here listening who don't have any ABA in their whole country or live like you do out in rural areas. And even Kelsey, our community manager, has been on the podcast multiple, multiple times now. She was driving, she was in Canada and she was driving for ABA services over an hour each way. And they unfortunately were doing the wrong thing and our child was getting worse. So just because you have ABA or you have it, you know, in a clinic or to school and, and something isn't working and they're working on the wrong things doesn't mean that ABA is all bad or it's just it puts you in a difficult situation, I'm sure, with being out in the rural area, trying to you know, that's a complication, too.
Zulekha: Right. I agree, because right now where we're at with ABA, I love that it's at home and I love that I'm able to be in the sessions and help out. But at the same time, I think I'm at a point where I would rather have them in the clinic, you know, actually go in away from home just because at times I feel like he's a little too attached to me. And then with his little brother as well, too, he's in the sessions. And now he's that to the point where he wants to do everything his big brother is doing, which makes it difficult for the focus to be on Maddox. Maddox is our four year old autistic son, so it takes the focus away from him a lot because little brother, you know, I want to do it or signing, more me. So it's difficult. So I would personally rather have him go away from me now and do ABA outside of the home, which is another reason why we're looking to move. So that way we have a variety of services and we can do that.
Mary: And in my first book, The Verbal Behavioral Approach, which was published in 2007, a very long time ago, it just came out in its 17th language with that being Spanish finally. So both my books are now in Spanish, but in that first book I talk about not quote unquote moving for services in that, you know, like if everybody just went like, okay, where's good service? And then you see this all the time, I, but I want to make a disclaimer that I do think that you should move. But in my book I talk about how, you know, don't just pick up and move to X, Y, Z County in New Jersey because you heard that they give ABA or they have a good ABA clinic. Because what happens is that the ABA clinic may be full, maybe for kids at different functioning levels, maybe kids at different ages. The school board may change. You know, you could move right next door to me with a very similar child and not get the services that I would be getting for my son. So it's really a crapshoot, however, with that being said. If you live somewhere that's really inaccessible to services or you live somewhere or you have to move anywhere for somebody, a job or, you know, some other factors, then you better believe I would recommend looking into where with the best place to move would be, and that would revolve around a lot. But anyway, let's move on because we have done. I think I've done five or six hotseat so far. So I'm not really sure if we're going to count this as a traditional hot seat because the other four, five or six, I think the first one wasn't really a real hot seat either. In fact, the middle ones were all like people sent me their assessments and their plans and really walked like I was able to review documents and that sort of thing and then fully give my thoughts on it. Now this isn't really advice either way. Whether you send me forms or not, I still only know a small fraction of your son and your family situations. This is for informational purposes only; nothing here I'm going to advise on is actually advice, not medical or behavioral advice. And when you are talking about self-injurious behavior, it's even more critical that people know that this is just a discussion we're moving into, like the hot seat portion of this, and we can link the other hot seats in the show notes to give you an idea of like how in-depth they can be. And they were all kinds of different things. But I think it would be good to just talk about how Zulekha's son is, like she said, non-speaking and he has self-injurious behavior and meltdowns or tantrums. So the first thing I would do is, if we need to assess, we don't need to jump right in to assessing the self-injurious behavior and the tantrums, because I have a lot more questions. My first question is, have you done the assessment, the turn autism around assessment, which is in the book as a one page assessment? It's in the courses, but it's also just in October, just released as a digital assessment. You know, you probably didn't get looped into the digital assessment at this point, but it is basically the one page assessment.
Revisiting the One Page Assessment
Zulekha: I did the one page assessment.
Mary: You did the one page assessment. Have you done it recently?
Zulekha: I have not done it recently. So I haven't done the one page assessment since I took your course last year.
Mary: Right. So that is the first step because my questions about other things like for instance, let's just look at the one page assessment now people listening can go right now to MaryBarbera.com/freeassessment because for the first 1000 people you can take a ten minute assessment online and you can get your whole one page printout individualized for your child. And that will definitely be free for the first thousand. And then we're, you know, I've invested a lot of time and money into this digital assessment, quantifying everything and giving scores. So after this interview, Zulekha you want to start there. But the one page assessment is in my book, page 49. So let's just first quickly go down and he got a diagnosis. He's four years old. How many months now?
Zulekha: He was born in May.
Mary: So he's four years, three, four months at this time. Okay. So it's kind of important that it's not like a brand new three or a brand new four or four turning five, you know what I mean? Like, so when people say, oh, my child's four, I kind of want to know, okay, so he's four and a quarter or something like that. Okay, I got the diagnosis at three after his sensory processing. We're just going down the left hand column. She is currently receiving services. Is he on any medication?
Zulekha: He's not on any medication.
Mary: Okay. And allergies, is he on a special diet?
Zulekha: He is lactose intolerant and he's a very picky eater.
Mary: We will get to picky eating soon. And any allergies?
Zulekha: No allergies.
Mary: Safety awareness concerns?
Zulekha: He does elope. He wanders traffic, he'll walk into traffic. He'll go right into the water. He does not pay attention to these things. Yeah.
Mary: So that's a big, you know, area of need is safety and that's very common, especially for younger kids on the spectrum. Okay. So eating and drinking, you said he's picky. So is he like, what does he like? What will he eat? What won't he eat?
Zulekha: Okay. So, of course, his favorite food is pizza. So he'll eat pizza. He will eat oatmeal. He will eat peanut butter and jelly sandwiches. Typically, the only thing he will drink is water or pediasure and chips. Of course, he's not a big candy eater. That's about it. He's extremely picky. I used to be able to get a lot of smoothies in him and he's back and forth about the smoothies now. He'll sometimes drink them. Sometimes he won't.
Mary: Yeah. So in the book, there's a whole chapter on picky eating and that is chapter ten. Also, Zulekha did recently come back to our membership program. So there is a bonus video on feeding with actual videos of me helping kids learn to eat and be less picky. And then also in the book and in the course, we talk about this easy, medium, difficult foods list so we can link a podcast episode about that as well. So does he use utensils?
Zulekha: Is learning to use utensils he does not have and down all the way yet every now and then he will use a fork. But he still wants a lot of assistance.
Mary: Yeah. So I don't push utensils, especially for picky eaters that have a lot of other skills to work on. But I would. Scooping with a spoon is an 18 month skill. So for both boys I would push that more than I would push forks or not knives.
Zulekha: And to be honest, he's only been interested in using utensils lately because his brother uses them. So they've been doing it. So he's trying to. And even with Maddox, too, he just learned how to take an actual bite out of food. Well, maybe like a week two weeks ago, I think, like if you had a banana, take a bite and pull away. He was never able to do that until recently.
Mary: Wow. Yeah. So. And he's swallowing. Okay, you can give him things to chew on?
Zulekha: To swallow. He will hold pocket things in his mouth at times. A lot of times. But he does know how to swallow. Yes.
Mary: And you might want to get a feeding evaluation. There are feeding experts. You have one? Okay.
Zulekha: We have that. But it's on hold right now because of insurance issues and us living up here and Maddox not being able to go off the mountain, like I said, without throwing up.
Mary: Yeah. And how about bottles, pacifiers, any of that?
Zulekha: We stopped pacifiers at 18 months, we stopped bottles prior to that.
Mary: So what kind of cups does he have? Does he drink out of a straw? or an open cup?
Zulekha: Yes. He drinks out of a 360 cup, and knows how to drink out of a straw. He can at times drink out of an open cup, but that's difficult for him. Still, he will just kind of pour it on himself or pour it out.
Mary: And what about sleeping problems?
Zulekha: Yeah, sleeping problems. A lot of sleeping problems, I would say from 18 months old till maybe about two and a half or. Oh, no, yeah. Two, almost three years old. And to be honest, once he started ABA, those sleeping problems stopped. Oh, yeah. So I don't know if it's just. I feel like it's him being in because he does it for 5 hours a day. So he's really gaining a lot of new skills through ABA, you know, maybe putting his brain to work in different capacities and different ways. That's helping him to sleep more, I think, and just being more interactive, gaining new skills. It's helping him a lot as opposed to just, you know, he used to just drop rocks. He would pick up rocks and drop them. Pick up rocks and drop them to where he wasn't really being worked with his brain.
Mary: Yeah. How about potty training? Have you tried any of that?
Zulekha: Yes, we've been potty training for maybe five months now. I don't remember exactly. He has been able to successfully go once, twice in the toilet, now eliminated in the toilet. But since then he got COVID and then potty training went out the window. I'm going to be honest, he had COVID a couple of weeks ago. So we stopped potty training. And as of last week, we started potty training again. And we're not just fully going into it, we're just going in the bathroom. And like you had a video on Tik Tok saying, you know, just take him in the bathroom and change their diapers in the bathroom. So that's where we're starting to do that as opposed to sit on the toilet. He's not ready for that yet. So we're going very slow.
Mary: Sometimes you have to repair the bathroom, repair the toilet, you know, get an insert for the toilet at this point versus a little potty, because I think.
Zulekha: He's too big for the little potty.
Mary: Too big for that. Plus, you know, you might as well get something that is going to be good for the long haul. And, you know, up until actually pretty recently. I was recommending a little potty, probably a little too much, because then there is a transition to the regular toilet with this insert. And so I saw something somewhere and I was like, You know what? I think I've been a little bit to recommend the small potty. I mean, for really tiny kids, you know, 14 month old or whatever, you know, like sit them on a couple of times, you know, a day is fine, but as kids get older, it's just too big.
Zulekha: His younger brother is potty trained at 20 months, so it is helping him to see him do it. So that and then we also so his younger brother uses a urinal and I'm thinking maybe we can try Maddox with the urinal as well. And we've tried it a couple times and he still doesn't quite understand, but he I notice he is watching so.
Mary: Well, I mean, one caution and I am, I have been called the potty queen because I'm a registered nurse and a behavior analyst. And so potty training is one of my specialties. I have a whole chapter, my book and two bonus videos in the course that you can watch, but. For kids like Maddox, sitting on the toilet is key for urination. Boys should sit until they're fully bowel trained. In my long career of two decades plus, I have seen so many older boys who are pee trained but not trained and refused to go on my potty. So I would not recommend personally going to a urinal unless it was going to be. He used the urinal. And then he sat. But a lot of times those first bowel movements are actually by accident as you're sitting to pee. Okay. So sitting to pee and relaxing, everything is key to pooping on the potty. So the other thing is, if he's constipated at all and most people say, no, my child's not constipated. But 90% of the people that go to I'm blanking on his name. The doctor that I had on the show on a podcast, he's from Wake Forest. I'm blanking on his name anyway. We're going to link this in the podcast episode because basically 90% of the people that come to his clinic say their kids aren't constipated and they do an x-ray and 90% of kids are constipated even when their parents say no.
Zulekha: So how would a parent know that without the x-ray when it seems like with Maddox, he’s going everyday to every other day?
Mary: Okay. So kids should be going every day. Every other day is probably too long. You can also tell by. All right, I remember the guy's name is Dr. Stephen Hodges, and I first found him and credited his work in the book. It's No Accident. But more recently he published the MOP book and the Pre MOP book. But his advice? He's a pediatric urologist. Which urologist is Pee? Yet his whole practice focuses on constipation. And that's the whole episode he did with me was a really great episode. So his advice is you need to keep a close eye on documentation. If your husband's watching him or the ABA therapists or whatever, whoever changes his diaper because he's not potty trained yet. Kids should be going and adults every day, 1 to 2 times a day if they're going every other day. It might not be a huge issue, but it probably is telling us that he's constipated. The other thing is you really have to look at the consistency of the poop. Like, I remember way back before I had this information, I'd have clients that were potty training and they would literally send me these little parties full of adult size, big form stools. That's actually bad. That actually means that they are holding their poop and they are constipated, even if it doesn't look like little hard balls. It looks like big poop.
Mary: If it only comes out every couple of days and it's either hard balls or large extra large poops, that's a sign that they're constipated.
Zulekha: Constipated. Okay.
Mary: So, anyway, we need to figure constipation out before you get too far into potty training. But relaxing, having boys sit on the potty is a big thing I would recommend versus a urinal.
Zulekha: I've been pairing his potty prior to him getting COVID with the tablet because that was so hard to get him to sit. So when he did finally go one day, he was watching Mickey Mouse and it even shocked him, looked to me like, so I have to pair it no matter what with Maddox.
Mary: Yeah. Yeah. Okay. So. And then grooming and dressing, like washing hands, brushing teeth. Will he do those things?
Zulekha: He'll brush his teeth but not really. He'll start to brush them. And then because he'll look at his little brother and his brother's like and then Maddox will just start chewing on the toothbrush because he has chewelry and all that, or he'll put his hands in his mouth and he'll go back to doing that behavior with the toothbrush and dressing himself. He does not know how to dress himself. We work on it every day. We practiced and washed his hands. He does get excited to wash his hands, but he won't really go through all the movements. He wants to do it really fast and be done.
Mary: Okay. And what about will he let you help him brush his teeth?
Zulekha: He will let me help him. Yes. Or let me correct that for maybe about 10 seconds and then he's done.
Mary: Yeah. So it's important that kids not be crying or refusing prompts to help them. Complete tasks like grooming and dressing, because that actually also leads. You know, it is a problem. And so we need to focus on that. Okay. I also did a video blog on how to desensitize kids to anything aversive, even like sitting on the potty, how to repair things. It's in chapter 13 of my book. I have a bonus video within my course on desensitization that you may want to watch. Okay, so you said he's non-speaking, so we don't have to really go over every little bit. But when I hear non speaking, I want to know, does he make sounds or have any word approximations or any pop out words?
Zulekha: No, pop out words he does make sounds like with Maddox it's a lot of Abba Abba and dig dig dig dig dig dig a. A lot of different sounds and he's been making a lot more different sounds in the last couple of months, we've noticed. So last night, something happened while I was in the kitchen making dinner. His dad swears, he said, up. Okay. I was telling Maddox. Okay, Maddox, stand up. Up. And he says, Maddox said up, up. I wasn't there. I didn't hear it, so I don't know. So that's where we're at currently. Okay.
Mary: So my one piece of advice would be that, you know, he is making sounds and that's great that you're getting farther with AAC and those sorts of things. But I would also really push vocal language pairing vocals using the one word time series strategy. Up, up, up. Before you pick them up before you go up the steps. As you're going up the steps, use those single words up to three times when you're going to open a door, stand down, get to his level, open, open, open. You know, especially as he's young, it's never too late, like, you know, four year old. But he only started real therapy after three. You only got a diagnosis after three. So it's really not. I don't find it useful to kind of put him in the category he's going to be severe for the rest of his life. I have seen lots of other kids that looked particularly bad at three and four and that started to flourish later. I also wanted to say, and I want your thoughts on that, but just so I don't forget, you were saying he chews on the toothbrush and he chews on chewelry and those sorts of things. I have found that excessive chewing can oftentimes be a medical issue, and I've done a couple video blogs, one on chewing and one on mouthing, and we link both of those. But like, if you're if you're listening and you're out running, you're like, I want to know the show notes will be at MaryBarbera.com/201 which is going to be Zulekha's show notes. But you can always Google Mary Barbera or Mary autism plus the topics. So chewing on clothing or mouthing mulch at the playground or which is even more dangerous, you know, like that. But as you can see, you know, I do want to get your reaction. I should have got it before I jumped out and asked.
Zulekha: The question is really quick. What were you saying that that was linked to, like lacking a vitamin or nutrients or. Okay, yes.
Mary: Or it could be like have you checked his lead levels and things like it could very well be a medical issue. And I know Luke has had a ton of chewing and looking back, there were things that I wish I would have done like back. And I mean, this is the late nineties, early 2000. Like us, they didn't have good chew that was nontoxic and like, like the OT gave him some rubber to chew on, which was probably filled with chemicals, you know what I mean? Like, it just, you know, could have, should have, would have. I mean, it was way back, but.
Zulekha: So what would you have done? Would you have given him chewelry to be fully accessible to him all the time or?
Mary: In my video blogs now, now that I have seen many, many kids chewing, I have advice that I don't just keep giving Chewy's usually, you know, again, I'm, I don't know your son. I don't know anything about him, but I would investigate.
Mary: Zinc, magnesium, you know, zinc to copper ratio. Like all of these things that I've looked at through the years with multiple kids, not just my son.
Zulekha: If he doesn't have his jewelry, he will put his whole entire mouth or hand into his mouth and chew on his mouth and just excessive saliva going all down his face and neck and clothes. So it's hard because it's like, okay, do I let him keep chewing on his hands or do I give him the chewelry? Well, I mean, you.
Mary: Give him the chewelry, but I would investigate that a lot, a lot more. I mean, I don't know how much you've investigated. Drooling is also another big issue that if he's drooling, that needs to be investigated. That's not a part of autism. Chewing excessively is not part of autism. Like you need to get the bottom of it.
Zulekha: I'm going to do that. Thank you.
Mary: And you can see, like you wanted to talk about self-injurious behavior and tantrums, which we get to. For those of you listening, we're getting there. But as you can see, if you don't do this quick snapshot, ten minute assessment, which is now available on digital, we're missing all of these clues. Mm hmm. You know, his tantrums and self-injurious behavior is telling us, is communicating something to us. Right. But unless we are the detective looking at all of these areas, we're kind of jumping to focus on the wrong things too quickly. Right. Okay. So we're not going to talk about echoics, intraverbals. How about his receptive language on the bottom of column two: can he touch his body parts? Can he follow directions?
Zulekha: Doesn't touch his body parts. Doesn't follow directions. These are all things his younger brother does, Maddox does not do these things.
Mary: Yeah. So instead of working so hard on expressive language, we also need to really build up that receptive language to that understanding. Body parts is so important. That's why it's such a big fan of Potato Head, because even for older kids who don't yet talk, you know, they need to know their body parts to at least point towards hurting or if there's a problem and that sort of thing, which is later down the line. I did want to get your thoughts, though, on what I said, which is probably going to come out after we talk about self-injurious behavior. But, you know, when I said don't just bucket him into the severe category. Now at four, what's your reaction to that?
Zulekha: So my reaction to that is, yes, Maddox is right now currently extremely high needs extremely. And I like to walk in faith and believe, which is why I do things like how I took your course. And, you know, it helped to educate him every single day. But at the same time, I don't want to. I guess it could sound kind of morbid. I have to prepare myself if I'm going to take care of him for the rest of my life at least, and have him live with us. And because it's hard on me and my husband and even our relationship, I'm not going to lie. It's extremely hard and things have to possibly move and do these things and see him with his self-injurious behavior. That's hard as a parent. That's why I don't stop helping him no matter what. With Maddox, I'm going to keep helping him. I'm going to keep researching. I'm going to keep trying new things to see how far he can go and is willing to go. Because with my son and a lot of people who are autistic, I believe he knows so much more than what I think that he knows. And I'm seeing that through things like ABA. So I do feel like he's severe according to his diagnosis and communication, but I see he is gaining communication with his AAC device and you know, through some sign like he can only do about two signs. But the fact that he did learn a new sign in the past couple of weeks shows he can learn these things. So I believe in my son so much, probably more than anyone. And that's great because I'm his mother. So I do feel like he can make a lot of progress and he can reduce a lot of his autistic signs and possibly, maybe one day show no signs of autism. But I still have to prepare myself if he does and if he's going to be with me and if I'm going to be the one helping him go to the toilet when he's 30 years old, say. I want to prepare myself, but I do see a light, you know, and I'm reaching for it for my son, because I can't stop reaching because I want the best for my son, I'm sure, as any mother would.
Mary: So that's great. Okay. Let's jump back in here to imitation. Can he do any imitation? So you said he's, like following his brother.
Zulekha: Yes. There's a great role model. And so he imitates things that his little brother does. Like we got him a quad when he was 18 months old, and at 18 months old, his younger brother started writing the quad. And Maddox never tried, never wanted to, and now he's attempting to. So things like, if you tap your hand on the table, do this, you know, like they do in the autism diagnosis, at times he will do that or pat his legs. If you've got your legs, he's starting to gain some imitation through super simple songs on YouTube, stuff like that. So you say, clap your hands or sing the song. If you're happy and you don't stop your hand. He'll clap his hands. Sometimes he doesn't get it and he might stomp his feet instead of clapping his hands. So he still gets really confused with that. So his imitation is very minimal.
Mary: Yeah, imitation usually comes before receptive language, like the pairing of Clap Your Hands or Touch Your Head with a model that'll come first. And so if I were his ABA provider, I'd be looking at really a lot of those things that you said, a lot of object imitation, a lot of gross motor imitation, a lot of imitating his brother, either during therapy, after therapy, you know, where you want to build up that imitation, because most kids learn all kids learn most language and social skills and self care skills through imitation. So imitation, it sounds like he has some emerging nice skills. So that's great. And then what about matching?
Zulekha: Oh, yeah, he's great at matching. Great, excellent, excellent. And matching. And what are your thoughts on that? Because in the ABA, we just talked about some of this because they keep doing inset puzzles and Mr. Potato Head over and over again or flashcards over and over again. And Maddox looks so bored. So, you know, I brought this up to him trying to communicate, can we mix it up a bit but still bring it back every now and then? So that way, you know, we're expanding in other areas and yeah. What are your thoughts on that?
Mary: Yeah. So we want to keep like language enriched things like potato head and for potato head, not just going arm, arm and having him put it in the right hole because we want him to be like arm, let's touch our arm and model, you know, arm or hold up the nose and say, tell me, what do you want? Oh, you want nose. Let's touch our nose. What do you want to know so you can expand on everything with those inset puzzles. You can also start, you know, a 12 piece jigsaw puzzle and take, you know, other things matching, expand the field size, expand what he has to do and build in and right away the receptive skills that go with matching. So if he can match duck, great match duck or touch duck where you're holding up a picture of the matching doc and then he's touching. So matching and imitation skills emerge usually quicker in kids with autism. We want to use those skills to bring up that receptive and expressive language. So my thoughts are that it's great that your ABA providers like doing Potato Head and doing Inset puzzles and that sort of thing. But you're right, we need to keep going and we need mixed verbal behavior. And it's great that Zulekha took the course, all the courses paid for them, watched all the toddler courses, some of the early learner courses. She's back now for the whole thing but Zulekha has professionals and the professionals in her life need to take the course too. They can get behavior analyst credits, they can get their early intervention credits. It's not fair to expect Zulekha to be the mom and run the program when she's got ABA providers coming in 5 hours a day. And a great start would be to have them suggest they read the Turn Autism Around book. But it's probably not enough to just listen to this podcast. Things get tricky when you start to teach colors. You start to teach length of utterance. You start to teach prepositions and pronouns and reading and math and writing, and it's all in the bundle. So ideally, if you were moving, you would want to find somebody that embraces my approach, which unfortunately, you know, it's hard to find.
Zulekha: What do you feel about when you do have ABA coming into your home like we do currently? Should I? Do you feel a parent should be there 100% of the time in the session? Or should parents be away? Because I've been trying to break away a lot because Maddox then he's having these meltdowns when I breakaway, but I'm trying to tell his ABA provider, this is why I need to pull apart so he can be with you on his own and be comfortable with that and learn from someone else.
Mary: The problem is, Yes I don't. I mean, if I have to be around for 40 hours a week of Lucas's ABA therapy from the time he was three until he was in school, I would have lost my mind. You know, I would have gotten nothing else accomplished in my life. So, no, I don't think parents should be sending their 100%. But I also. Know the professionals. I don't know about the professionals in your son's life, but I know that in general, professionals can be like, Yeah, we got it. Oh, it's normal for him to cry. No, it's not normal for him to cry. There are systematic desensitization programs where mom is in the room now. Mom goes to go to the bathroom. The child does not have a meltdown. The mom goes out to get him breakfast or a snack and comes back in and the kid doesn't melt down. And eventually the person is well paired. And there is no problem with mom being in the house, not being right there. But no, I don't recommend you leave and let them cry it out. And then, in fairness, the person that's there isn't a highly trained behavior analyst. It's somebody that's trying their very, very best. And it's a bigger issue than even we can discuss. You know, there's so many issues.
Mary: Okay. So that is the end of episode 201. I know we kind of cut the episode, maybe not at the best place, but the best place where I thought we should cut it. The episode was really long, and would have been our longest by far, and I decided to break it up into two chunks. And so next week, we're going to talk about her son, Maddox's severe problem behaviors. And I'm going to give you some ideas. Give her some ideas, and you listeners might have ideas about how you can prevent and make the goal to get major problem behaviors out of her near zero. So make sure that you tune in next week to hear part two with Zulekha Williams. That'll be episode 202. So I hope you enjoyed your one. Have a great 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.
Sign up to receive email updates
Enter your name and email address below and I'll send you periodic updates about the podcast.