Many families I talk to look at the struggles they are facing today with fear for the future. But over the years I have worked with so many children who I never thought would drive or go to college and are doing just that now. There is no crystal ball to tell you what your child’s future will look like or whether or not they’ll need 24/7 care like my son Lucas or Denise D’s son Vincent. Either way, there are things you can do and life can be great no matter what the outcome.
Denise and Vincent’s Autism Journey
I found Denise on TikTok, she is a positive and happy mom to her 23-year-old son with autism. Her journey started early, noticing symptoms at 10 months of age in her son. By 16 months he had a diagnosis of severe autism. This is incredibly early, especially for the early 2000s but this set her son up to receive a variety of helpful therapies including speech, OT, PT, and eventually ABA. Vincent was able to attend an ABA school funded by the school system from age 2 to 22. This was an incredible benefit for Vincent’s needs. However, due to changes in Vincent’s behaviors and needs after the pandemic, he was no longer able to attend the school’s adult extension program.
Autism Parent Training Program
There truly are not enough resources or programs available for adults with autism, so it is important to start planning for this complex transition as early as possible. I suggest families begin planning for adult care programs at age 14 because as with Denise and Vincent’s situation, anything can happen. Denise was fortunate to find an adult program for Vincent where he interacts with other adults cooking, going on outings, and practicing other daily life skills. Denise shares about his strengths and weaknesses, and even though he is 23 her goals for him never stop. The Turn Autism Around book and course are typically geared toward young children but in reality, they are for individuals with skill levels of young children and Denise shares all of the ways they have truly benefited her mindset in working with her son. It is never too late to help and change behavior, and the same techniques that work for young children can and will work for adults with autism.
Positive Aspects of Caregiving
Being a caregiver or parent to a child, teen, or adult with autism is not easy. There are hard and difficult times, but Denise says the key to happiness starts with your own positivity. She has created a community around her by staying positive and trying her best to stay involved. It can be tempting to shut yourself in out of embarrassment or fear of what will happen. Denise reminds parents that sometimes things will happen and you will be embarrassed, it’s the people who stick with you through those who become your community and shoulder to lean on. Denise also encourages caregivers to take care of themselves and make time for themselves. It can be easy to let yourself go and put your child first 100% of the time, but you need to be healthy to give the best to your family.
Just like her TikTok Denise is a positive light with so much encouragement for other autism families. You can check her out on TikTok to hear more about her life with Vincent. I am also on TikTok so go find me and leave a like or a comment!
Denise D on the Turn Autism Around Podcast
Denise D is from New Jersey and is a married mother of two. She is the caregiver to her adult son Vincent who is 23 years old. She was an early intervention/family support therapist for 13 years. She attended Montclair State University. Her background is in floor time. Her interests are fashion and beauty. She was honored by the Facebook community for uplifting mothers/caregivers of children with autism. She is a public speaker at events and schools. She recently found a positive community in Tiktok. She’s passionate about helping families believe in themselves, taking charge of their loved ones’ plans, setting goals and supporting one another to bring the community together.
- Autism journey from a parent of an adult with autism.
- How to stay positive and happy when caring for an adult with autism.
- No journey is the same, the secret to living in the present with your family.
- Coping with 24/7 adult care as an autism caregiver.
- Finding your autism community and resources.
- Can Turn Autism Around help adults with autism?
- Table Time and Reinforcement in ABA | How to Increase Reinforcement
- 5 Autism Legal Lessons I’ve Learned Over the Past Decade
- Denise (@denised4972) on TikTok
- Love for Autism
- Assessing a Child with Non-speaking Autism: Hot Seat #7 with Zulekha
- How to Deal with Autism Meltdowns: Hot Seat with Zulekha Part 2
- Mary Barbera on Facebook
- Mary Barbera on TikTok
- Mary Barbera on Instagram
Denise D – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 204
Severe Autism in Adults: A Parent's Key to Happiness with Denise D
Hosted by: Dr. Mary Barbera
Guest: Denise D
Mary: You're listening to the Turn Autism Around Podcast Episode Number 204. Today I have a guest on the show, another guest from TikTok. She is my fourth guest that I met on TikTok that I didn't know before, her name is Denise D from New Jersey. And Denise has a son with autism. He's 23 years old. And he reminds me a lot of Lucas in terms of his language abilities and the fact that he needs 24/7 care. But Denise is super positive. She features her son Vincent on her TikToks a lot and shows that he's a great person. They have a great relationship. She remains very positive. This podcast interview is all about her journey and how, if she knew then what she knows now, what she would do differently. And a lot of advice on self-care for parents and professionals. Love getting to know her better. So let's get to this interview with Denise D.
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: Well, we have Denise here. Thanks for joining us today. Denise.
Denise: Thank you for having me. It is a pleasure to be here with you today.
Mary: Yeah. So we don't know each other, but you are my fourth guest from TikTok that I met on TikTok that I didn't know before. TikTok is amazing.
Denise: TikTok is amazing. I was blown away when I saw you there because I had researched your book and I said, Oh my God, she's on TikTok.
Mary: Finally made it. Okay, so I don't know you well, and I know my listeners don't know you. So why don't you tell us about your fall into the autism world?
Denise D, Her Fall into the Autism World
Denise: Thank you. So my son is Vincent and he is currently 23 years old. He was diagnosed when he was a little over a year old. So that's how we fell in the autism world.
Mary: That was early.
Denise: It was early. And it seems I know it sounds a little cliche, but it feels like it did happen overnight, you know, like from where we saw him developing to like an eye opening up. Like we have to really acknowledge that these things are happening. It felt to happen so quickly between around nine and ten months. We saw changes with him. So by the time we called the doctor and got him in, he was seen around 13 months by a developmental pediatrician. And then we moved to a formal diagnosis around 15 months through a neurologist. So he was formally diagnosed before he was six months old.
Mary: That is extremely early, especially when you're talking about over 20 years ago. That was really. So what kind of changes did you see at nine and ten months?
Denise: So, you know, my husband and I really thought that he was just a really good baby. Our first son was constantly needing my attention. So that's what I was used to. And when Vincent didn't really seek that attention from me, I didn't think anything of it except that he was just quieter and happier on his own. And I let it just go the way it was until my mom at the time who was very detrimental to our situation, like helping us realize what was going on. She had a little bit more knowledge on autism because she had a friend at the time whose adult son had it, and she was just very concerned. She had worked for a doctor too, so she was just seeing things and I know she was a little fearful to bring those things up to me because I don't even think she wanted to believe it, but it was concerning her and some of those things were when you would be playing with him, he would ignore his interaction with you and be more into the toy he was playing with. And then we started to realize he was just spinning it constantly. And if we tried to look at him where most babies at this age are engaging with you and they're so excited to meet your eyes, it almost felt like he was always looking directly through us, and if you moved, he would almost just keep staring out the window with the lights or any flashing lights that were going on. So those were the little signs in the beginning because again, he was a very well-behaved baby. But these little developmental things that we were expecting to happen just started to slightly change and then it just seemed like it changed overnight.
Mary: So over the years, what kind of services did Vincent have and kind of where is he at now on the spectrum?
Services and Therapy in the Early 2000s
Denise: So when he was diagnosed, he was non-verbal. Severe autism. There weren't levels at the time, and I know that there was like PDD-NOS and because he was not communicating and non-verbal, they really did put him more on a severe end after all the testing they did on him. And I remember the neurologist saying to me, as hard as this diagnosis is to hear and we don't know what's going to happen with Vincent in the next year or two, where we see him now and giving him this diagnosis will help your family get the amount of services that it will take to help him. So we would focus on that. And although it's really hard to hear as a mother and a father, we realized that. And it took us a little while to understand this, but that having that diagnosis was going to really push forward early intervention coming in and the amount of hours he was going to be accepted for. So we did get started on early intervention. Within a few months, the therapist would pick up. Week after week, we would kind of have someone new come in as a speech therapist, physical therapist, O.T. We did it all. And floor time was the main basis at the time. That's what they were teaching us. And it was really just getting to learn how to play with Vincent, meet him at his level, get on the floor with him when he's playing with toys. Just jump in and try to play with the toys with him as he was stacking stack next to him. See if you can sneak in and stack a block with him and just get him to be comfortable enough to not feel like he was working. It was more about play therapy at the time.
Mary: And so you didn't do ABA therapy.
Denise: We started ABA later, around two years old and he had a lot of hours in ABA. Actually at home, I would say he was doing about 15 hours a week and then maybe up to about 20 hours a week before he turned three.
Mary: Okay. And was that successful?
Denise: Very successful.
Denise: Very successful. I mean, in the beginning, I'm not going to lie. It was a little difficult because we had had the other therapist for so long and they came from a different way of approaching Vincent. So we just had to learn what this way was going to bring to him. And once they started getting him to the table and actually off the floor, he started to build his attention span. He started to learn more skills. And honestly, he was having behaviors at the time. His behaviors had started to kick in, kind of throwing those tantrums and those little meltdowns. And the ABA therapists were truly helping us learn how to handle those behaviors. I feel like if we had just done the floor time, which was also beneficial, we may have been chasing him around the house and always trying to figure out how we can get him centered and self-regulated.
Mary: Yeah, well, as you probably know, and my listeners who have listened for a while know that ABA was back then and still is the most evidence-based treatment for young children with autism. And I tend to think that I have a very child friendly ABA approach and bring some of the elements of floor time and those kind of child led, child friendly approaches to ABA. And I'm a big proponent of table time, but my table time is different from the table time that Vincent and Lucas got when they were two and three years of age, because it is really taking that reinforcement and early manding and bringing everything to the table. So it is a little bit different. I did a video blog on table time in which we can link in the show notes, but I know you have my new book, Turn Autism Around, and you've read some of it. And you have told me before we started recording that you wish you would have had my book. So like, what about my book would have been helpful.
Turn Autism Around, Helping Adult Autism Mothers
Denise: So I'm so glad you asked this because I want to say that and you're going to understand this. We did not have the Internet and the access to social media to meet other families who were going through the same thing as us. So my best friend was the books I read and I would, in all of my spare time, pull out a book, focus on one chapter at a time, find goals that I was trying to meet for Vincent and really engross myself into what the professionals were trying to help me with. Because again, your therapists go home, you have them for an hour here, an hour there, and you're left to really follow through and carry through with everything you're learning. If you're only going to be helping your child when they're in therapy or in school, you're going to see a lot of things fall apart at home. So by reading these books, it was so. Helpful to me to carry through and to continue to educate myself on how to learn about my son. Your book is so family friendly, and I also feel what I love about it is it's coming from a mom who went through it. You're not only a professional with so much advice to give to families, but you first and foremost went through this, you lived it, and there's so much knowledge behind that. And then it's like so much support coming from another mother. So for starters, I love that that's my beginning, but I also love how easy you really make it for families to understand. There have been many books I read, and it's not that they weren't great books and great reads, but I was confused and then I would be trying to figure out what it meant. Where I can skip that step with you. And I feel comfortable enough to tell another family when they let me know their struggles to send them to your book or to send them to your workshop. Because I really believe that it's very easy to understand, and I think that's important. You know, not everybody's an avid reader, so books can be intimidating and yours is not that at all. Some of the things I love about your book is that you cover every topic. So whether it's feeding, communication, behaviors, toileting, safety, I mean, you literally cover it all. So for families, whether their child's diagnosed or not, maybe they just have some issues they're going through or their child's falling a little bit further behind. You get so much great advice on how to work through those hardships.
Mary: Well thank you. Yeah. Back in the late 1990s, when Lucas was diagnosed and I'm assuming it was around 2000 when Vincent was diagnosed, give or take a year, the wait lists for evaluations were not that bad. The rate of autism was one in 500. So it is very different. And like you said, there was just the very beginnings of the Internet. But there was no social media. There was nothing. And so I know we met on TikTok, but like in some ways though, it's like there's so much information and there's people wading around, waiting and wading and wading in the bath and just swimming around in this huge sea of information. And that's where I feel like, I think it's because of my nursing background. Like, I've always been like, okay, take a big problem, you know, a big diagnosis and like break it down, make it very easy to digest and comfort the family and that sort of thing. And I felt like when I got into the autism world, I'm not sure if this is the way you are feeling, but I was so overwhelmed and it was like there were very few people that were able to be super helpful. Like you might yeah, you might have a great speech therapist and she may have given you this advice and that was really good and that worked. But she didn't know what to do with the behavior. Or the O.T. knew this and this, but she didn't know what to do about, you know, like the speech therapist was saying, get rid of the pacifier for speech. And the O.T. was saying they need this pacified. I was getting a lot of conflicting advice.
Denise: Absolutely. And I felt the same way as you did. So imagine now adding on not only hundreds of thousands of different parents' opinions on things. If you're somebody, for example, that is thinking about ABA because you've heard the success stories, but you now head on to TikTok and just have a slew of video after video of people bashing ABA. You know, parents are going to be so much more fearful. I have to say, I am happy with the time that I raised Vincent in because this would have been way too much for me. And the reason I keep my tip top content the way I do is because I think there's so much value in showing my relationship with Vincent and yes, adding resources that can be beneficial to families and answering their questions. All of those things are great, but I focus more on looking at this beautiful human being, look at our relationship. This is where it's turned out at 23 years old without having to ever say, if you don't do ABA. I look at the professionals and I do believe I'm very happy that I'm in the position I'm in now where I can be on TikTok, share my story, but not rely on other people's opinions on how to travel this journey.
Mary: Yeah, so I have seen a lot of your tiktoks and you do feature your, your 23 year old son Vincent and I think he's kind of give or take at the same, you know, similar level of Lucas. But why don't you tell our listeners about Vincent and kind of what his strengths and needs are, what he does during the day, how much care he needs, those sorts of things.
Life with an Adult Child with Autism
Denise: Sure, I would love to. So Vincent did start school at three years old. We, just to go back a little bit. He did a floor time school at the time because we did want a school that was ABA based, but there wasn't an available room at the time. So we did a floor time based school from 3 to 5 and then from 5 to 22 years old. He was at the same private school, a school for all children on the autism spectrum from mild to severe. So he was able to stay in the same school his whole life, school life, which really was so helpful to us because for him, the getting to know people, the routines, the familiar setting, all of that really helped him grow each year.
Mary: And that private school was funded by the public school?
Denise: It was. Our town had nothing to offer.
Mary: Right. Right. So you just for our listeners, if you are in a state in the United States, at least if you're in a state and a county and a city, where at the time I mean, this is the late nineties, early 2000, they didn't really have much going. Still, a lot of places don't have much going. And Denise is in New Jersey was probably has the most private schools for kids with autism around in the whole state. And so without a big fight, kids like Vincent were placed. If the parents wanted it in schools, usually ABA base was your was your school ABA based? It was. Yeah. In New Jersey. And so he was able to stay there year after year. And the public school would pay for that and transport him. And it was almost like his school. I'm not sure. You know, we've done a ton of of podcasts on advocacy and legal stuff and we can put a couple of those in the in the show notes. And then we had Gary Meyerson, who's pretty famous attorney up in New York, I believe, and he wrote a couple of books on advocacy and the legal to get kids in private schools. But we were not going to get too much into that. Okay. So he went to the same school and he graduated. And then what happened?
Denise: He graduated and luckily he did graduate. His last two years of school were the whole fall out of the pandemic. So that was a little difficult because the year leading into the pandemic was his best year at the program. Like we were floored. Like we were finally seeing where we started and where we were coming to and we were starting to see like his future and how it was going to be transitioning into an adult program when we had to. And then, of course, like all families, we hit the pandemic. And his therapist wanted to see him over Zoom, and he wasn't having it. And we saw so much regression at home because even though they were so supportive and wanting to help, he just was not having it. He was not doing what they wanted him to do through the phone once he was in the comfort of his home. So we did lose that time and it did hurt our chances of the program that we originally wanted, which is an extension to the school. They have an adult program, so of course we wanted to stay with them. He had been with them from 5 to 22 because he has a summer birthday and our for so many years we just saw him staying with them, just moving to a different building to their adult program. And the issue with that is they were not equipped for any type of aggression. And Vincent can be an aggressive person. He has come a long way in that area, but he still can be aggressive. And so because they weren't set up for that, we had to find a program that would be able to handle that with, you know, more staff to student ratio. And that became a little bit hard for us because for so many years we just assumed he would stay with this school so that now you're working with people from the state and they just helped. I mean, they did a lot of the work for me. Obviously, I had to do the research and visit the programs and it was hard coming out of the pandemic because so many places weren't open at the time, but it fell into place. And he literally started his adult program a week after he graduated from school. So he had no... But we started early. Everything is, you know, knowing what you need to do early enough and definitely getting the right people around you that push to help you through it early enough, because a lot of families are turned away and they're told you don't have to do that. You can wait six months before, but in this day and age, especially where we are now, where we used to start transitioning, we need to back it up because there is not a lot out there for families.
Mary: Yeah. And the age of transitioning or the age when you really need to start planning for that officially is 14, especially because when he was 14, you were assuming that he was going to continue on with the school after the school, the adult program and and then there's funding and those sorts of things. And it really is very, very complex. Like people have asked me, are you going to write a book about adults with autism? I'm like, No. It really varies. So now in terms of just just the funding aspects, let alone the care aspects and, you know, then the pandemic and factor in his aggression. So language wise, does he talk?
Denise: Yes. So back to Vincent's strengths and weaknesses. He does try to talk, but we cannot rely on that because, of course, in his head he's saying everything the right way. But for people to understand him, his strength is typing. And we have done AAC devices and we have done Proloquo through his phone. He is happiest when he can just flat out type and not go through all the pictures. He knows how to do that, but he feels more successful when he is just typing out sentences. So he opts to do it that way and he doesn't even want to hear the voice speaking for him. We have to kind of encourage that so that whoever's working with him, if he erases it too quickly, they get what he was saying. But he, you know, really quickly learned how to spell. He doesn't write. His fine motor is really, really difficult for him. So typing is just his way and he can type fast and he can get his point across.
Mary: Stephanie, did he learn to type with the right fingers? Yes. So that was during school he learned to type?
Denise: He did.
Mary: I'm actually a big proponent of and you know, I say that. And meanwhile, we've never tried even to teach Lucas to type, which might be something I should look into. But I learned to type in high school and it was a really great skill to have. And then I encouraged my son Spencer to seriously learn to type, because if you just do it like here and there, you're not going to learn. But it definitely has to. There are some great online programs, so they systematically taught Vincent to type and now he types fluently.
Denise: So just to correct and maybe I had set it wrong they his speech therapists all through the years wanted him basically if you could take Proloquo which is an app on the phone which helps for communication with with children that are non speaking and even speaking they were teaching him all the levels of that starting from basic to like how they had so much set up on his iPad where they wanted him to go into all those categories and it was completely setting him off, even though he understood what all of those pictures meant, he did not want to go through all the steps. So his speech therapist kept saying to me, He just wants to type on the keyboard, but it's very vital that we get him to learn all these different things he can say, or he's just going to keep saying the same thing. She is 100% correct about that. But ultimately, now that he is not in school anymore and he is at his day program, we don't we're not staffed with the same type of people. We have a different style. And it's more of a caregiving atmosphere where obviously goals are still being met, but it's more community based and it's more about, you know, adults all trying to, like, live under the same roof during the day and do, you know, cooking and go to the movies. And so it's different from school. So without having somebody one on one or a speech therapist right there to constantly encourage, we needed him to be able to feel comfortable and to have less aggression. So we accept the typing and it's still encouraged to say more, but that is Vincent's way, typing.
Mary: And so this was a part of Proloquo and a part of speech to learn to type. You don't have any learning to type programs you would recommend?
Denise: I don't because he is self taught. He absolutely was self-taught but he insisted. And you'll find that like I always want to try to help families like you will be so surprised by what they know. Another little tidbit on the side is we didn't know Vincent how to play the piano until we were at a friend's house who had a piano. We never had a piano in the house. We were at a friend's house and he sat there and started playing music. And honestly, we felt and I come from a family, my husband's very musical. And my older son is very, he plays the drums, guitar. They have good ears for music. I just thought he was playing like any other child. And the family that we were visiting said, that sounds like true music. That's not just like, like he is playing music. And then out of nowhere he started playing songs on his own and never had a lesson. And now he can sit down, read the music, and even if he doesn't have the music in front of him, if he just hears a song and it's usually a jingle from TV or something classical, he will sit down and just sit there looking up and thinking. And then you hear the song come to life. Is it perfect? No. But he has this skill we didn't know he had.
Mary: So do you have a keyboard or a piano for him now?
Mary: Nice. Nice. So that's great. Yeah. Lucas always was interested in music, too. He learned to play the autoharp, but not from, like, from actual lessons and stuff. But yeah, it's a different part of the brain for music. And one of the pieces of advice from an older child's mom early on was to get Lucas into music therapy. And so Lucas has had a music therapist in his life from the age of three, and he's 26. So I think that's a great tip. Denise is, I do encourage that and learning to type and learning to play a musical instrument are connected. When you said he was self-taught for typing, I actually went right away to music. So I'm glad you brought up that example.
Denise: Oh, that's great.
Mary: Yeah, yeah, yeah. So he goes to a day program now, but like you said, it's community based and they do cooking and those sorts of things. And he started that pretty recently.
Denise: It's been a year and a half in the adult program and that'll bring me to the week. This is because I feel like I told you a little bit about his strengths. The weaknesses tend to come forward into a day program because he came from a place with so many people on top of him, so many people guiding him, directing him, correcting him constantly, helping him understand what that routine was going to be, where even though he is very supported in the day program, there is only so much they can offer because again, less staff, more people, and they really do encourage independence. So anything Vincent does he can go to the bathroom on his own and he can wash his hands on his own so no one's on top of him to make sure that all those steps are being done correctly. You know, he kind of just goes to the bathroom and comes out. So hopefully he did everything he was supposed to do. So this is where his weaknesses can come out, because if he's not, Vincent likes to be told what to do. Not all kids do for Vincent. He thrives on that because he loves the interaction of somebody being like, Great job, you did awesome. It encourages him to keep doing it. It's what motivates him to keep going further. So if you kind of just let him be alone, yeah, he'll sit quietly in the corner for quite a while on an iPad, but it's when you then try to then pull him out and give him all these tasks. If the schedule and routine doesn't stay the same, you will see those weaknesses come because he gets so disorganized and that's where it can come to be aggressive. You know, just not knowing what to do next and not having that encouragement is a weakness for him and also safety. Safety's a huge, huge thing. No matter how many social stories and how many in-person activities we've done with him, we've taken the books with us, the binders and done the stoplights and the crossing the street. Some things just don't click. I don't know if that's the proper way to say it, but for Vincent, they just don't. So he learned hot and cold and especially if it's labeled. But, you know, he could easily go near a stove and burn himself. He might not know what to do. If he was near a fire, he definitely would run out into traffic and it wouldn't be to get hit by a car. He just might be excited and not thinking about the repercussions because he doesn't have anybody to tell him what that would be.
Denise: So safety. He is a huge weakness and he does need 24 hour care. He can be left alone in a room and he can be trusted. But I would never leave my house. So we barely go outside without him. And we have cameras everywhere.
Mary: Yeah. It is a different life when you really can't run to the store quickly. That level of care is. But you seem used to it. You seem to still have a great life. And, you know, and that's the other thing I think is good to hear from people like you, Denise, that are like living and thriving. And it's not this doom and gloom and, you know, it's like it is what it is. So. Any thoughts or advice on that? Like if people are like listening going, oh God, I hope my kid doesn't need 24/7 care.
Denise: I know. And I believe that my husband and I first of all, speaking of my husband, he is a huge support. So there are many families that are doing this singley. There are many families whose immediate family and even friends have turned their backs on them, don't really want a lot to do with their children. And I do feel for that. I just always was so positive about my situation and I never made anybody around me feel uncomfortable about Vincent. So yes, he was different, but I would always start off by showing all the cute things he did. And even if it was silly, like everybody in my life just got to know that that's Vincent's thing. Barney is Vincent's thing, too. And. And I didn't. I could have easily pulled myself away. Being embarrassed, you know, you can't help those emotions, but I could have either sat there and closed myself off and said, nobody wants me around. I mean, nobody really wants to be around somebody that doesn't want to be around them. It starts with you. And believing your child belongs, believing that you're going to fail a few times. There's going to be embarrassing moments. There's going to be some meltdowns at people's homes. I think you have to know who you can surround yourself with. Even if it's a few people, it's better than nobody. But I think that you have to just do it and stop. Like fear gets in the way of people because people want their kids to go. And even if their kids are at a good level now in school, some parents still are afraid to, like, go, you know, try lessons or go to a friend's house where the kids are having a party with typical kids because they still fear something's going to happen and something may happen. But there are people out there that are going to open the door to you know, there is not a world where everybody is shutting the door in your face. You just have to find out who those people are. My husband, you know, we have been married together for 30 years. It is very, very encouraging for me to stay positive because I do have a partner who's on board and he does help with his son.
Mary: Yeah. So if you have one of your best friends or you have a grandchild or a great niece or something, that they just got a diagnosis or they're showing signs and you can give them advice. Or at the beginning of the journey from all of your years, what advice would you give them.
Denise D, Advice for Parents New to the Autism World
Denise: If they just got the diagnosis? Well, I would start off by definitely telling them to take a breath, just take a breath and pace yourself. That to me, I feel like that's what I did. I did. I wanted all the services that I could get because it was vital. But I really believe that I took my time and focused on one thing at a time that also had to be taught to me. I just didn't understand that. But that would be my favorite thing to say to family members, because I focus on one thing. There might be ten things that they're doing that you want to change, but just try one thing at a time, and once you see that working, you can carry it over into some of the other things. I would definitely say to use social media lightly. Take breaks from social media, pick up a book. I hate to plug you, but pick up a book and read. It is peaceful. It's encouraging. I love that you offer a free workshop. I know you have some other workshops that families can join, but there are so many ways to utilize them. I know so many people will say finances are hard, time is hard, but we really can make the time to do what we want to do. If you have an hour to flip through TikTok, join a free workshop. Get yourself, throw yourself involved in the community. Surround yourself around other autism families, whether they're the same age as your child or they're a little bit older. But definitely take a little social media break. Don't let too much of that noise influence you. Focus on your child and meet them at your goals. I really do love that when you talk about that, Mary, and how we have these goals and we all do. I still have goals for Vincent. And I have to say, even though I've been there and I feel like I've done that with the earlier developmental book reading, I can go back to a book like yours, even with the age Vincent's at. And it kind of brings you back to like, Oh, Vincent's regressing. So how can I go back to the beginning where it always was, what worked for him and kind of retrace my steps and I feel like a book like that can even help someone who's already kind of been there, done that. It doesn't mean we have to stop reminding ourselves. What was it that got us there and made them so successful?
Mary: Yeah. Yeah. And, you know, my book and my workshops and my courses and all my tiktoks there and this podcast, all my podcast episodes, they're really to help kids with a language ability of a 1 to 5 year old with maybe some problem behaviors, maybe some issues with eating, sleeping, toilet training, safety. You know, so as you're talking about his aggression, aggression at times, we had aggression with Lucas between the ages of like 14 and 18. And we really were able to knock on wood, get it to zero, really with a medication, which it's a cardiac medication. I mean, it's bizarre. And that's Dr. Michael Murray's interview on the podcast 180 I believe we can link to my show notes, but like, as you said, like keep trying. It's not like, oh, this book is for early signs of autism. There's a chapter on problem behavior, and I'm sure Denise has read it and can read it again. And it's never too early and it's never too late to implement these techniques and make a goal like, can you get his aggression to zero? And I think, yeah, that should always be the goal. It shouldn't be like, okay, let's get it down to, you know, once a month. Because at our kids' ages and sizes, any aggression is really dangerous. It can really affect like you illustrated placements, it can affect where you can bring him, the kind of care that you can give. So I like the fact that you're saying, you know, even though the book or the courses maybe are really meant for little kids, we have videos of little kids. If you have an older child, a teen or even an adult with these problems, you can still use these resources. You just have to kind of get out of your head like, I can't do this. That's a two year old in the video and I can't apply it. Yeah, you can.
Mary: Take some deep breaths, like Denise said, and start working on your biggest issue, your biggest safety issue, your biggest, biggest issue that's going to affect not only the child's life, but your life as well.
Denise: Absolutely. I mean, it really is back to basics. I can't say it any better if something was working for Vincent and I saw him become so successful by doing it this way, then as he regresses, I need to not say like, Oh, this is a phase. It'll just. He's probably just not feeling it this week. No, it's really my place as his caregiver, his mother. And to help him, he's not going to figure it out on his own. So by me going back to those basics and kind of strategizing what I'm doing and getting a little bit, it might be more strict or more routine because we fall out of routine sometimes, especially when things are going good. We kind of relaxed back and we're like, Oh, I got a whole movie in and he was in the other room. But sometimes giving them too much of that alone time will lead to these aggressive behaviors that are just any sort of behavior that you don't want to see them regress back into. So, you know, it's really just about remembering where you started and how you got here. And if you're just starting and you don't have a place to know where you're going to head. Again, I go back to really trying to take your time. This doesn't happen overnight. It doesn't even happen in a year. For some people, it takes years, years, but all the sudden a light bulb goes off and you're like, I can't believe where I was five years ago. Look what he's doing. Could they always be doing a little bit more than you figure out how you push them further? But yes, it takes time. And I also wanted to add that I forgot to say before that I think taking care of yourself is important. And it was something I never stopped doing. I thankfully had my mother as a babysitter. And again, I mentioned my husband being supportive. And Vincent has an older brother who's also been very helpful in watching him to give me a little extra time. But at any time you can find for yourself, even if it's when your child's with a therapist, even if the therapy is within your home. If you could sneak out of the room for half an hour. Don't let yourself go. Whatever it is, if it's once a week, if it's once a month, just remember how important you are and how much you need to be on top of yourself for health. You know, a lot of families ignore their own health because they're so focused on their child. Take care of yourself so that you can be really good, hands on and loving to your child.
Find Denise D on TikTok and Facebook
Mary: Yeah. So that kind of brings us to our last question about self-care and things like that. But before we get to that, people can find you on TikTok. Give us your TikTok handle.
Denise: Yes, on TikTok, It is @DeniseD4972.
Mary: Okay. And then you also have a Facebook page that people can visit. Facebooke.com/Loveforautism.
Mary: You can keep in touch with Denise. You can watch her video. She does share a lot of her and Ben's. And you can kind of see their relationship, which is amazing and hear her. I mean, one thing about Denise says she's very positive. And I interviewed Zulekha a couple weeks ago, and she has a four year old who was having a lot of issues actually just to follow up with about a week. It was a two part interview. It was 201 and 202 episodes. And in the very last, like before we got to this part, Zulekha asked me. What kind of bloodwork I would recommend, which I was just like, Oh gosh, I don't really recommend what blood work should she go to ask the doctor for? Because her son was having a lot of aggression, a lot of chewing and mouthing of things. And to me, as a nurse and a behavior analyst who saw a lot of chewing and mouthing and even pica, eating things that aren't edible. Anyway, I rattled off a couple blood things that I would ask for, including zinc and magnesium and the lead level and copper. And I was actually planning on cutting that part out. And then TikTok, you know, a couple of days later, she said she took him to the doctor, asked for the blood work, and his lead level is high.
Mary: And now she just posted that her baby's blood level is high. Wow. It just illustrates, like, you know, you just can't stop. And if you have a problem, it might be medical, it might be he needs more support or it's not the right placement or whatever. Right. Can't stop. So we decided to leave that part in. But, you know, one of Zulekha's questions to me was like, with this four year old, like, how could she prepare for teenagers or for adulthood? Because she's kind of thinking that her son's really severe and has all these issues now that she's going to end up with a severely impacted teen or severely impacted adult. And it's like, no, no. You have to just focus on the here and now, because if that is caused by lead or if, you know, there are other things, I mean, there are kids that I worked with in sixth grade that I did not think would drive or go to college. And they are. So I also want to think you and I have the same message, too, is that just because Lucas is like Lucas or Vincent is like Vincent doesn't mean your three or four year old or sixth grader is going to need 24/7 care. So. So I think it's important to kind of listen to moms of older kids, but not to kind of paint a picture of anything.
Denise: Absolutely. Absolutely. And it's such a compliment when I get a comment like I hope my child is like Vincent one day, because, I mean, I don't even have to explain to you why that's so meaningful. I would hope that that means that they hope their child's happy because to me, I take it day by day. Vincent's going to need and Vincent is going to need my or my husband or other caregivers overseeing for the rest of his life. We have fully accepted that, and that's fine. But ultimately, my day to day, his happiness, doing fun activities with him, involving him, having people in his life that love him, accept him for who he is, those matter to me way more than anything else. Obviously, you know, there's going to come a time where all of us parents are worried about aging and what's going to happen to our children. And it is important to obviously be proactive as they become adults and make sure that you set up the world to be successful as what successful looks like to them. But I just always am a day to day person. I say, you know, Vincent could have had the worst day over the weekend, but I'm just not the kind of person that's going to come on and you're going to see me being upset and miserable because I truly know how I carry myself through this is going to be how the experience is. And I want Vincent's come on to a happy mom and I want to just enjoy whatever level he's at, how we can be happy, safe and healthy. That's just honestly, that's who I am. It's hard to express to other people. And I think, you know, if you are a mom or dad out there or a grandparent and you're struggling and you're having a bad day, there's nothing wrong with that either. We just don't want to stay there. If we want to see our children doing the best that they can do, reaching the goals that they're capable of, then reading, surrounding yourself around people, taking care of yourself. All of those things will make for a good environment. No matter what that looks like. It might not look like the other family, but that's okay. Whatever's working for you guys, it's about peace. At some point, just having some sort of peace within your home allows you to enjoy your family. Yeah.
Mary: So just to wrap it up, part of my podcast goals are not to just help the kids, but also help the parents. You gave a lot of good positivity. You know, you can do this and peace. And what specific self-care or stress reduction techniques or strategies do you use daily or regularly to keep this positive energy going?
Caregivers: Make Time for Yourself
Denise: Well, definitely with Vincent being in his aid program, I do have a few hours throughout the day to myself. So, I mean, typically starting this is something very basic, but showering, getting in some clothes, getting out of pajamas, you know what I mean? I'm not saying not every woman is into putting on makeup for me, maybe putting on my makeup. That is something you know, it's also like a little bit of a background for me because I did go to beauty school when I was younger. I've always just been the kind of girl who likes to dress up. And so by showering, even if it's just a shower and getting into comfy clothes, forget the makeup, it's just waking yourself up in the morning with something. If you love tea, grab a cup. There's so many things that can get you into that mode. Even if you had a really bad morning with them or a great morning, just remove yourself from the couch or the bed. That will absolutely help your day and yourself feel better again if you're going to be on social media. Just find what your niche is, who's inspiring you. It's no offense to anybody else. Everybody has the right to come from the place that they're at and you can meet them there, but just don't let all that noise in. I love listening to music, so having music on in the background versus TV is very helpful for me. I also like to nurture other relationships in my life. That is not easy for everybody. Not everybody has babysitting or respite care, but if you do push yourself, push yourself to go see a friend, push yourself. I you know, I do like wine. So if I can go have a glass of wine with a girlfriend, that's all the therapy I need. I also have another son. So getting in that time with the sibling. If you have multiple children in the house, even if you can find somebody to help with your child with autism, get that special one on one time alone with the sibling. It's so rewarding. Although we love to involve them in everything and we're so proud of them for being so proactive for their sibling. They need that time alone with us as well. So that makes me feel really good as a mom. My boys are now both adults, but when they were younger, it always made me feel good to go attend Angelo's soccer game or basketball game and be able to do that focus. So I think that there's many ways, whether it's self-care in the house and skin care, going out on a date, nurturing your relationships, those are the things that keep me happiest. And when I'm in a way, it's shutting everything else out. You know, if I'm in a bad way, I try not to go to somebody else who's in a bad way because it's you know. So maybe know who to go to and know who to speak to so that you can pull yourself out.
Denise: And when in doubt, there's nothing wrong with seeing a counselor. There are very good counselors and therapists out there. Nobody should feel ashamed of that. But everybody needs somebody to talk to. I do not advise keeping things in.
Mary: Yeah, love that. Love that. So we never got the advice to shower before. But I do think that that's a good, good piece of advice. Now, you know, really, I can see how that, especially working from home for me, can ride into not having a clear start to the day and not being fresh and awake for it. So I appreciate that. Well, it's been great. It's so great to get to know you better, Denise. I know we will continue our relationship on TikTok and thank you for being positive and thank you for sharing your journey with our guests.
Denise: It's truly been such an honor. Honestly, I enjoyed this so much and I'm really so happy that you chose to speak with me today. And I really do hope that everybody out there just feels better after listening to our podcast today.
Mary: Yeah, me too. All right. Have a good one.
Denise: Thank you.
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 in 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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