A Parent, A Child and Autism - Ep. 028

To finish up autism awareness month, we have a special guest this week. Join us to hear David’s mother, Rebecca, describe their struggles and triumphs with autism. David has been featured in all the podcasts this month, and I know you’re going to love hearing his story from his mother’s perspective. 

Music: Simple Gifts performed by Ted Yoder, used with permission

Transcript

Rebecca: I know my child. I do a lot of reading. I used to do more, but I still do a lot of research and a lot of reading and, and I'm, I I'm comfortable doing that. I'm also not naturally a creative person that would never have been one of the skills that I associated with myself in life. And David maybe brings out the best in me. I hope I bring out the best in him, but we are a team.

Dan: Welcome to The Mindful SLP, the podcast that explores simple but powerful techniques for optimal outcomes. Today, we have a really special interview for you. Denise is speaking with Rebecca, who's the mother of David, the client whose progress we have been discussing over the last few weeks. At the time we recorded this interview, David is 10 years old.

Rebecca is a very attentive mother who is devoted to providing David with opportunities to progress as far and as quickly as possible. We think you will really enjoy her perspective. This conversation is a little long, about 50 minutes, but we think it is pure gold. Some of the valuable insights you'll hear this week include Rebecca's perspective, active on treating the client and not the diagnosis, how she helped David work through some of his deep fears. How the pandemic has been both a help and a hindrance to him, how memorization has helped his echolalia and taking who he is and harnessing it for his growth. And now without further delay, here's Denise and Rebecca.

Denise: So Rebecca, I'd like to start at the beginning when you first started to wonder about David's language and development. Tell us about David as a baby and as a toddler.

Rebecca: Around his 18 month checkup was when a pediatrician raised some red flags, and we started all the testing and that's a horrible process, I mean, I'll just say, I mean, it is as a parent it's gut wrenching. You have this child and you want the world for them and people are telling you something's wrong. And not only is it gut wrenching, no one agreed. And that's a really hard place to be.

And you go to one appointment and, and they'll say, tell me what your son likes to do. And I'll say, well, we take him to college basketball games and well, how does he react? Well, he gets a little quiet and he clings to me. It was the first time he'd gone to a very loud 20,000 in the arena. And he, he was very quiet and they said, oh, see, he's he's stim adverse.

You've got an issue there a month later. Someone said, tell me about your son. What he's like to do. We take him to college basketball games. How does he react? He loves it. He's comfortable. He enjoys it. Oh, he's seeking the stimulation there. And it, it was hard for me because just a normal toddler. Here was a new situation. You adjusted you, you and you became okay with it. But I got a lot of that, a lot of differing pediatric ENT, this absolutely isn't autism, uh, um, developmental pediatrician. I'm not sure, but you need to watch this. And I remember even, uh, with the, with the specialist psychologist, I believe, and he said, I'm, I'm on the fence, and then he said, but I think I'm gonna call this autism. And then he recommended a program, kind of a preschool program. And I said, my concern is that my son imitates other children. And if I put him in a program with other children with autism, will he pick up their behaviors? And he said, absolutely not, children with autism can't imitate other children.

And I said, My son imitates other children. And then he said he can't, he has autism. And I just, this was my experience and I was gonna go, I, I was losing sleep. I was up half the night reading on my phone. I was, uh, everything I could and I just couldn't do it any longer. It was so hard. It was so gun wrenching.

He hated it. You take these kids and you put 'em into these small sterile rooms with three toys and a stranger, and expect them to act at least the highest they're capable of which, whatever that is. And it was just this hard gut wrenching experience. There, there was a night, and I remember, and for me, my faith will be a part of my story.

That's not everyone's, but it is for me. But you'll have clients and, and parents who it is a part of their story, and I think it's important to recognize. So I remember praying one night and I, and I just, I, I just said, if this is autism, tell me, I'll accept it. I'll do what I can, but just tell me what to do.

And it was one of the clearest impressions I've ever had in my life, was don't treat this as autism. And from that point on, I stopped seeking a diagnosis and I just focused on helping my child. And for me, that was the healthiest thing I could have done as a mother. And for my child, I was now back engaged and the stress was gone and all these appointments were gone and we just be began that journey, at that stage where I just said, I don't know what this is. I don't know what to call it. No one seems to agree, but I'm gonna help you.

Denise: And it is so valuable to hear that story, which just for some background listeners, I mean, I started working with David when he was in preschool and now he comes to my private clinic, but it can be easy for other professionals and SLPs when they hear something like that from a parent to say, oh, they're in denial because this is a hard thing, they don't wanna accept it. And we see autism as clear as day, but there's always two sides to the story. And I remember you telling me about a professional saying, oh, he's gonna catch up and he's gonna be like everyone his age, and that was a specialist. Yeah. And so all these different, all this information you're getting.

Rebecca: Well, and it's hard because then the people you start working with, there are some who were more focused on bringing me out of denial than helping my child.

And I remember to ones just saying to them, you. If I were in denial, you wouldn't be here. I, I wouldn't be seeking help for my child just because I'm choosing a different name or not following your terminology does not mean I'm in denial. My pediatrician and I still have this conversation. I don't actually label my son as autistic. Now I look at my son and I see a textbook definition of autism. And so maybe that makes me a little crazy, I'm sure I am. I see it. But I still don't label him. Labels can inhibit progress and people can hold others back from labels. I see it. You will not find anywhere in his official school records, a diagnosis of autism.

I'm sure there's plenty of teacher notes and other things in there. Of course. Um, And it, that's kind of hard to do with today's laws as they are, cuz you have to have diagnosis. And, and um, but I don't give him that label, my pediatrician and I argued all the time and he just says, but that's where the support is.

That's where the funding is, you know, regardless of what you wanna call it, take the label. It will help you. And, and I'm fine with it. I love him and I accept him, but that was for me a choice early on that I wasn't going to limit him with a label, even though I see it.

Denise: What you have done has worked so well, I don't worry about the labels either. I am talking about autism with, with these podcasts because I want other SLPs to know, what is possible for someone who has these kind of speech pattern that seems to occur in children like David. Yes. So I'm calling autism.

Rebecca: You call it what you call it, autism, and I'm with that.

Denise: Yes, they need to know what's possible here. I just know there have been pivotal moments in David's lifetime times when he seemed to surge ahead in his ability to communicate and, and learn other skills. What are some of those pivotal that you've seen?

Rebecca: Do you know? And I, I might be working backwards, the pandemic has been one. And that was a hard time to, in a sense, lose your village that's supporting your child, but it was also a really good time because I became his special ed teacher.

I began doing his speech therapy at home, both from the school and from private. Now we did have the support via zoom. Um, occupational therapy. I was doing his adapted PE to take it all I could see, oh, well, they're doing this at school. And, and he's doing this in private speech. Well, this goes together and this can support that. And it became a really good time. It was intense. It was exhausting. He passed off several IEP goals. We found a program, an online program that helped you. You helped me, um, find that. And he really thrived.

Denise: And the writing that he did. That has helped so much with what we're doing now, because he writes all of his stories. Would you talk about that a little bit?

Rebecca: His teacher gave me a journal and she said, you know, maybe during, during this shutdown time, just have him write a little bit about what he does every day. So I tried the at. Uh, the first day of school at home, which we'd had an earthquake here in our state, cuz I remember he wrote today, we did a shake it and um, you know, and you know, and, but I found that the next day when I tried to pull the journal out, there's nothing to say because it's a pandemic and the world is shut down and we're at home.

So what am I gonna say? Well, today we are home and we did school. Well today we're at home and we did school. So. I started asking him questions about his favorite things, that it was something that actually, I think helped him process the loss of normalcy that he was going through. And so I would just give him a sentence prompt and I would say, I like Disneyland because, and then he would start.

Maybe the second time he wrote a third of a page, maybe the third time it was a half page within a week. He was writing a full page and it stream of consciousness, absolutely. But he started expressing himself in a way that he hadn't done before. And, and that ability to write and express has been huge. And I feel like his speech followed it. And then I'm sure you'll probably wanna comment because I started sending you copies of what he was writing. And you noticed.

Denise: Back when we were still doing zoom, I came up on the idea of how he hadn't fully developed all the stage one sentence types. So yes, I started that and I asked you to keep track of his writing cause I was doing these monthly evaluations and I did see how he started to get more and more generative and spontaneous in what he was writing. Yeah. The grammar kind of broke down when he got really, really expressive, which is exactly what you wanna see. Some of his sentences would be we did this, we did this. And then we did this and we did this kind of a formula sentence.

But then when you wrote about going to Jackson Hole or whatever, and in the boats and everything, the grammar broke down, but the information was, there was so much more information there. I'm thinking of these specific sentences I analyze. I don't know if you remember them, but that was a real key thing to me, the kids with autism, they sometimes get in these formulaic ways of speaking and they have these certain rules that they have to follow and they only know how to use one or two sentence types. And that started to break down in his writing.

Rebecca: Yeah. And, and so I would say definitely the pandemic focus and that journal opened a huge door to him for his development. Another door that really opened was when he learned to read from what I understand, you know, you're using different parts of your brain and different brain connections. His speech started to develop the confidence that came from learning to read, opened up this huge door of just progress in all areas.

Denise: And just so our listeners know you are the one who taught him how to read . Tell us about that.

Rebecca: and I feel like I need to talk to parents too. I know you're talking to therapists. Fight for these kids because they are so capable and you can get into a program with wonderful teachers. He's had wonderful teachers. You know, there was one year that was a bit rough and I'll leave that aside, and aside from that he's had amazing wonderful teachers and experiences, but they all haven't seen him and seen his capabilities. He'd have a great year and then he'd move to somewhere else with the district.

And he'd have a lovely teacher who was just content to entertain him and give him basic learning. And I couldn't do that. I, he was now in first grade and they weren't teaching him to read. And I couldn't sit back and watch that he very intelligent, very capable, uh, you know, knew his alphabet early and, and he doesn't perform.

I mean, when they were saying, we don't know that he can make the right sound associated with the letter. And I said, well, of course he can. And they said, well, how do you know? And, and so I started singing, Old MacDonald had a farm, and on the farm, he had an H. And my little boy would say here, and I'd say, okay and honest for had a w what, and, and that was, you know, and I always had to think outside the box and at school, they weren't seeing that.

And, and that's fair. They don't maybe have the time or, and the energy to think outside the box. So I said, okay, we're gonna do this. If it's not happening there, it's gonna happen here. I worked with a tutor, um, for some time a lady who's a former educator and she does a lot with the brain balancing theories of putting a child on a balance board and then doing a fine motor skill playing catch. She loves it, actually, he would still do it at home, just to help the brain focus. And then we started, um, forwards and backwards just with his phonics. I have a letter box. In fact, I bought one more simple from Lake Shore Learning, and it's just a little box and it has an animal for each letter of the alphabet.

And so you can match your alligator to your a and your bear to your B, but I have a huge bin of other small toys that would also fit in there. So we started just, where does the bear go and where does Mickey go? And I started interacting and just taking things from home. And we did that for a while. Just really solidifying all the sounds and all, all the phonetics.

And then, but we just piece by piece, we worked on it, some of the little puzzles and the games when you're putting your words together. He liked the flashcards when you have the C and the A and the T on a different card and you put 'em together and it makes cat. And he was very good at that. And he was very good and he was very capable and he could memorize, but we we'd continued to do a massive amount of just creative games. Scrabble letters, I have a bag of just Scrabble letters that I still use with him from time to time and make him spell. And then I found a program called The Short Books. It's out of a small publisher back east and they were right for him and they're sight word based. And your first book was just the title of it is A. You open a first page and you'll see the word a dog.

And then on the other side, there's a picture of a dog. And then he turned the page and a butterfly and there's the picture of the butterfly. And he could do that. He could, he understood A and he could get, you know, associate the picture with the word, you know, each book introduces a new sight word and they switch at their sentence structure so that the kids can't just memorize sentence structure.

We just went through the whole series and that series opened the door for him. It was just the right combination a year, a private tutor, a lot of money, a lot of effort seeking for answers. And then just at home, we just read and read and read. And I remember going into school, I, I would hire a babysitter for my other children, so I could go into school, when they're doing their reading. I am that crazy mother. And I'm so sorry to these teachers when they're doing their reading time and I would see what they're doing and I would bring some of these books. And I would say, this is a book he's never seen before. Why don't you do this with him? And then the teacher would say, oh my goodness.

And I said, he can read, and then I'd hire a babysitter and I'd come back a week later and I'd see them doing the same thing. And I'd have a new book with me. And so at that point, I started searching for a different teacher at a different school where he would be understood because there was this disconnect where I can only do so much at home, but it wasn't being supported in the school.

And so then I had to find, I legitimately was, um, going to different classrooms and observing and talking and meeting and interviewing teachers, district probably hates me, but he's thriving and he's reading at a fairly advanced level for his, from where he's been.

Denise: They weren't challenging him, you know? And I could see that. Yeah, he is really thriving where he is at now. And I know you fought hard to get there. And we were both so glad that he is where he is in my private practice. Thelp do share. You know, they're goals with me. And I see the IEPs and I had seen when we was at those other places that the goals underestimated his ability. So the staff were underestimating what he could do. So yes, you needed to fight.

Rebecca: His IEP at the last school, the, when he was in first grade and, and that year that I taught him to read, I, I actually apologized to his teacher when we moved him to schools. I just said, I'm gonna apologize to you about this IEP. I had just hit my wall, as a parent. His IEP was ridiculous. It was about 35 pages long because it would have a goal from the teacher. And then it would have a very long paragraph, 'mom reports that child is able to,' and all these things that he would do. And then it would have this goal that completely underestimated and undermined. Mom reports, that child is reading at a primer level. And then it would say, we're gonna work on the phonics. I mean, and legitimately it would have all these goals through that. And then I started adding things to it. I remember saying the teacher, this child has to be social. He loves to help. Can you just ask David to pass out the pencils? Well, no, because if I do that, every child wants a turn.

I'm difficult enough and I understand the law enough to know that in the IEP they have to do it. So they had to give him a helping assignment every day. This child thrives on praise. If you praise him for doing something well, he will show you what he's capable of. And again, if I do that, every child needs, every child will expect that.

Denise: And every child needs praise. I just cannot say that.

Rebecca: I didn't see the problem. I, I also didn't see the problem, but I didn't care. Bless their souls. It was only a few more weeks in that school, but they had a clicker. They had to track how many times they praised him a day because I was done. I mean, I was done and the new teacher, I just said, look, read it, figure him out, talk to me and let's, and you can redo this IEP as fast as you want. You don't wanna walk around with a clicker every time you say good job, but if it's not happening, I am that mother. I fought too hard at this point and it was within his first week of school and she emailed me.

And she said, you're right. She said, I look at the IEP and what they said and what mom says. And she says every single time mom is right. And I guess I would say that too, do listen to us parents. We don't have your education. We don't have your experience, but we do know our kids. I know when we've done his latest round of IEP testing and the teacher and I filled out the same surveys that I overestimated his abilities consistently with her, but it followed the same pattern on the graph.

I mean, it was, I know I'm overly optimistic, but I also so do know my child really well, and so when the teachers actually really connect and listen to me and understood him That was the other key in these spurts of growth. He got into the school where he's now, and he's, he'll be there second through sixth grade with the same teacher.

And it is just perfect for him. He's thriving. He's pushed, he's working within it. He's happy, he wants the success. And once he was given the skills to read and to write, he's now able to reach that success.

Denise: I remember my first pivotal moment with David, which was in preschool. We mostly played basketball and blew bubbles, because he would talk to me about basketball and about bubbles, and I could reach him that way, but I felt like I was just kind of, we were just kind of there and we weren't moving forward. And so I asked you at an IEP meeting, I said, well, what does David like to do? And you said he likes to build things.

And that's when I got this whole idea and I've done a previous podcast about it, but of how having him just choose pieces that he wanted to build a tinker toy model and just having him look at pictures of two pieces and choose the one piece that he wanted, that made a huge, huge difference. And then he'd just start to talk. He'd tell me, he'd want the yellow circle, the red stick. I wasn't even prompting him to talk. But there was some kind of connection going there and where it used to be that he kind of protest a little bit when it was time for him to come to speech therapy, sometimes protest loudly. He would have fun once he got there, but it changed because I would walk out to the playground and he came running towards me.

He ran towards me, threw was arms around me, let's go to speech. And that was like, well, I just made a connection with him. Yeah. I just figured out how to make a connection with him. I mean, that was the first pivotal moment. I've had other pivotal moments with him too, but that was just like, if you can just figure out your key to that child, you will see things that you didn't see before.

Rebecca: And i, and I think when I have seen my child succeed is always been when a teacher or a therapist or whoever has connected with him. David is not an easy nut to crack. And that's maybe where parents' rule comes in. I can tell you here's some ideas on how to connect, but once you connect with him, he's happy to blow bubbles and play basketball, and he would still do that today.

And just play under the radar and pretend I can't do all this and I'm not capable, but once you connect, he just opens up and then he wants to perform for you, you know? And I'm sure that there's a whole lot of discussions and, um, therapists, but for me, I've always as I've sought out people for him, you have to treat my child, not treat a delay, a disorder.

And I, and I've learned over the years to see the difference in the approaches from practitioner. And my child has to have someone who looks at him and says, I'm gonna figure you out, David. And then we'll, we'll work on this together. And maybe that comes back to my original, don't treat this as autism, it probably wasn't telling me this isn't autism, it was 'figure out David and help David'. And for him, that's what he has needed in life.

Denise: There is a saying that I've heard other professionals in my field views who work with kids with autism, when you meet one child with autism, you've met one child with autism. Yes, we do see some similarities, but each child has their key.

Now there have been some times that have been a little bit discouraging I remember particularly when he had to have some oral surgery. Yeah. And I just think that it might be important for parents to hear. I hope parents listen to this podcast too. you know, cuz perhaps that could have been prevented or alleviated when describe that experience.

Rebecca: Yeah. Oh, that's a hard one. To preface it, I don't move backwards. We fight so hard for forward progress. We really do. That, if I start to see things going backwards, I just, uh, we're, we're done. We're gonna stop. We're gonna focus on this. We're gonna keep moving forward or at least stay stationary. We're we're not gonna move backwards in our abilities.

So he had to have an oral surgery and he'd had one before I had gone to a different dentist this time, the dentist that I'd gone to the first time did a shot. I held him on my lap. They did a shot, you know, and then he goes to sleep in my arms and then they take him back. Well, the second one, at their practice, they take the children back and they put the mask over.

And I had gone in the day before I'd met them. I talked with them. I'd been very clear. You need to listen to me. You need to trust me. This child is different. We get back there. He's already nervous, he hates doctor's offices, dentist offices, to get him past a waiting room is huge. So we've carried him back there and all of a sudden, before I can hardly say anything five strangers have taken and pinned him down and someone's holding a mask on his face and I will never get over the terror in his eyes as he's looking at me for help. And I'm saying, no, no, no stop, stop, stop. No, and, and they're just saying the deeper he breathes the faster he'll go. This is okay. And I remember just saying stop and no one would listen to me and, and I get, they're doing their job.

They, and they don't understand special needs. They understand their job and they don't understand special needs. And I get that. You've known David since he was three, he came out of that anesthesia a different child. He came out fighting me. I have never been hit by my child or kicked until he came out.

We were in a waiting room. He is fighting. I had them give him to me and I had to sit on the floor and just cradle his head as he fought and punched and kicked. It was so traumatic for him and we couldn't get him to calm down. And after about 10 minutes, I looked at my husband and I looked at the dentist and I said, we're leaving.

And the dentist said, you can't leave. And I said, we are leaving. And I picked him up, still fighting me. And I took him to the car, put him in the car seat. And that was where he was safe again. He was out of that office and he was safe and he calmed right down and the dentist looked at me and I said, he has to go home, he can't be here. The pediatrician diagnosed him with PTSD. He had what the pediatrician said was classic psychotic after-effects from a drug. Um, he'd pick at his skin for weeks afterwards, just constantly his fingers just picking at himself like he was itching out of his skin. Personality was different, that's when the anxieties really increased in life. Dogs and other things, he always had anxiety about certain things, but that was when there was a great increase. Speech slowed down, withdrawn, everything. It was hard. Part of it. I, I absolutely know part of it was the way they held him down in the mask on his face. And as a side note to get him to wear a mask during the pandemic then has become a huge success. Sorry. To get him to even be able to put a mask over his face during the pandemic has been huge. And he wears a shield at school, but I require him to wear the mask when we go places where masks are required because he needed to learn and he needed to get over it.

Behavior changed, the fear of strangers, all of that increased, uh, and it was, it was a hard time. Loved him, held him through it, different child. Finally, about six weeks into it, and I had done my reading and I knew six weeks was kind of a pivotal time where we needed to get out of this. Or we were faced with some longer psychological, um, concerns.

We packed up and went to Disneyland and you know, my son, you know, that Disneyland, it's a magical place for him to, you know, every time during his early years we went, I would see a developmental leap. Uh, we were standing in line once and a woman turned and looked at him and said, I like your hat or something, or, or what is your hat?

And he said, it's Peter pan and or something to that effect. And he just. A stranger addressed him and he responded conversationally and she smiled and turned on and I turned away and I have tears running down my cheeks cuz she doesn't know what's just happened. Disneyland has always been this very right-brained safe place, all the stimulation, all the joy. And so we packed up and we went to Disneyland and I remember my sister never misses a chance to go. She was there too with her kids. And I remember we were sitting out of one ride one night and I looked at him and I said, you are crawling out of your skin. He was picking at his skin and my skin, not, you know, to harm it, but just rubbing it.

And I said, you're crawling out of your skin. And then the next day he woke up and that was done. And it was part of it, I think was just that healing. It was me knowing my child and I, every parent can't afford to just take their child to Disneyland, and I recognize that and how lucky we've been able, but also to find what it was.

And for us, I had to get him to his safest, happiest place possible. And, and then we worked from there, the anxiety, we still deal with to a degree, but I learned not to be afraid of it. I learned to really talk with him about it and, and to say we didn't like it when they held you down, you know, it was a little scary. It didn't hurt, but it was scary. And, and then to start talking about it, to help him progress through the anxieties that that experience seemed to open up in his life.

Denise: Yeah, that was just so hard because when he came to speech, he had, um, he's a gentle soul. David is really gentle soul. He threw a chair. He had never done things like that. He was so angry. I just thought that he regressed like two years. It was temporary, thank goodness it was temporary, but it looked like a two year regression of all the work we'd done. So I'd forgotten he had gone to Disneyland. I remember that.

Rebecca: It's it really is a magical place. He also right after that started a new school. That was when he moved to a first grade class. And I think that was also, it didn't help.

Denise: That's right. And they saw him, just when he got through that experience, because he had that surgery late summer, then he started the new school and all they were seeing was him with his PTSD. Yeah, I remember that.

Rebecca: It was very, it was a, it was a hard time.

Denise: But thankfully he has passed it.

There have been so many good things happening in his life lately. One more thing I want to talk about because I've been so impressed, Rebecca, with your ability to help David cope with fearful situations. Now I'm not just talking about this one we just talked about, but his fear of using the public restrooms.

I don't think a trained behaviorist could have done a desensitization program as well as you did. I don't even know how you knew how to do it, but you took him through these tiny, tiny little steps, exposed to him in very gradual ways till he overcame his fear.

Rebecca: I, I have to say, cause you, you sent me some questions to think about beforehand and I, and I wasn't familiar with the phrase desensitization program until I read your question.

Um, but I know my child, I do a lot of reading. I used to do more, but I still do a lot of research and a lot of reading and, and I'm, I I'm comfortable doing that. I'm also not naturally a creative person that would never have been one of the skills that I associated with myself in life, and David maybe brings out the best in me.

I hope I bring out the best in him, but we are a team and his fear of public restrooms was legitimate. It was consistent and he'd start to do a little bit better and then he'd have a problem, like a switch, a change in school, and then it's done, or a very traumatic dental experience. And then you've just moved, you've erased everything. And this point, he's he's fully potty trained at home, but I have to send him he's in first grade and I have to send him to school in a pull up because he won't use the school restrooms. And, um, Disneyland really is key in our life. My husband finally said, no more Disneyland until you can use all the potties.

And, but when you use all the potties, we'll take you to Disneyland. And that for my child, it was finding the right motivators. That was huge. For me, it was then creating the opportunity. We were doing tutoring that summer in between first and second grade at a school. And so the school was empty. So I could walk into a boy's bathroom with him, cuz that's really hard.

My husband, he's a wonderful husband, a wonderful engaged father with him. He doesn't have the same connection that I do and, and they have different connections. The patience in the bathroom thing was not his thing and that's okay. That was my job, lucky me. But, um...

Denise: You were so patient, cuz this is a matter of months and you would tell me I gave him just enough Coke, diet Coke, that he would have to go, but not too much.

Rebecca: Well, I, you know, we, he, he loves diet Coke and Dr. Pepper. I mean, don't we all, but he loves it. No one wants a caffeinated child and you really don't want a caffeinated child with special needs on your hands, but it, every now and then he'd find an open can or something and, and yeah, and get some at home. We were walking out of this school. I, and I was making him at this point, I used to just make him touch the door. Touch the door and until he stopped protesting and then open the door a little or peek ahead in, and it's harder, you, you know, I mean, I can't do that at Target cuz I they'll call the cops on me.

Yeah. And so it's harder now to find your situations where you can do this. Sometimes we would help clean our local church and then again, okay, let's touch the door, let's poke our heads in. And I. And I had gotten him to the point where he would take three steps inside and come out and we'd count 1, 2, 3, and then we're walking out.

He's um, I actually remember the day I had a migraine, I was pregnant. I was miserable. We're walking outta the school for, um, his tutoring and he asked for my fizzy drink cuz he calls it and. I looked at him and I looked at the diet Coke and there's maybe an inch left in the bottle. And I walked into the bath. It's one of those bathrooms where at the school, you don't have a door that opens and closes. There's just a wall for privacy. And I walked in, so he could still see it from the door frame area to the end of the privacy wall. And I set it down on the floor and I, and I'm a germ person. And that gave me all sorts of heebie-jeebies, you know, but I just set it down on the floor.

And I said, okay, you can have it, go get it. And it took a few minutes, but he, his love for soda was gonna get him that far. And then the next time we were there a day or two later for tutoring, I took it a step farther. And a, and then one day it's sitting on the sink and then the next day to drink it, you have to wash your hands and then you have to get into the stall.

It took me months to get him to actually use a bathroom in these safe school settings. And what I would do is, that time he finished school at three 30 and he had an appointment with you at four o'clock. So in those days I wouldn't send him home on the bus and I'd pick him up from the school and then the school's empty and I can go into these bathrooms with him and get him to use the bathroom.

But that school, that's not everywhere we still need. Now, if we're gonna go on a road trip and if we're gonna take him to a basketball game, I have to do these other bathrooms. And so then I started choosing locations where I knew I'd have some type of privacy in their public restrooms, a hotel lobby, most hotel lobbies have restrooms, but they're not as crowded as other public restrooms.

So if we're on a, we are on a road trip. And, you know, and we'd stop by Panera to pick up some food. And my husband said, we all have to go to the bathroom. And I said, okay. And I saw a hotel across the parking lot. And I said, that's where we're going. And, and I know I'm a little crazy, but I still remember that was his first success in a non-school public restroom.

And I was so grateful there weren't people in there, cause there are people in there and that's hard. It is hard as a parent when your child is screaming and protesting or crying or whatever. And you're like, you can do this, but I had to come in with him. I had to go to the bathroom first. I had to show him it was safe.

I had to keep my hand on his back. Automatic flushers are a thing. You can take a post-it note and stick it over the sensor, he doesn't like that, so I take toilet paper. I used to have a pack of post-it notes, but he'd pull them off and then it would flush and. And, um, so now I just take off a little toilet paper and I lay it down over the sensor and then he can go to the bathroom.

And when he's done, we can remove the toilet paper. Hand dryers. He doesn't like the automatic blow dryers for your hands. And if that goes off and he's in the bathroom, that's gonna startle him. So we've had to talk through that. Um, so it was just, it was a lot of time. The first time he successfully used a public restroom and he said to me, go to Disneyland.

And he had known this had been months and, and this is end of July, beginning of August. And I don't go to Disneyland when it's hot and crowded, I just... not with special needs. We're just not, I'm not gonna sign up to that. And I reminded him, okay, well, you have to use all the potties. And so then we started practicing and taking him places.

And, but still that first trip to Disneyland, no pull up, and I find the handicap restrooms where there's not a lot of stalls and it's just private and we'd walk far to get to the specific one. And the first time it took half an hour and I stayed with him and I heard other parents trying to get in and out and I'd say, sorry, we'll be a while. And it took half an hour. But at that point, I just, he was capable and he needed to know it. The pandemic's been hard on that. Oh yes. Because cuz we're not going places. And so that, the pandemic has been hard on that. And so I've had to make sure he didn't have any problem going back to school.

But as I have taken him to places and we've started to get out, I now make it a habit. Nope, we have to go to the potty here and you know, and he's almost as tall as I am. He's tall and I'm not, and he's almost as tall as I am. And you do get the looks from the people and that's fine, but it's something that you, you have to always work on because the moment we let it slide, even if it's for a good reason, like a pandemic, and there are no public restrooms to use, you will lose that progress.

And so that for me has just been, it was the Coke, the diet Coke and the Disneyland promise. And for his first year at school, his teacher, I, I supplied her with diet Coke. And when he would go to the bathroom, he'd have to, you know, successfully go to the bathroom. Um, she'd give him about, just about an inch in his cup, but that was his reward.

He started just saying 'fizzy drink', to let them know he needed to go. And then they required him to, you know, may I go to the bathroom? And we were consistent with, you know, with the rewards.

Denise: Consistency. That is amazing, and, and just knowing the tiny steps, like let's put our hand on the door, not everyone would think of that, of the tiny steps. You would've been a great speech therapist Rebecca. I mean, we have to think of these tiny steps too. So all of this amazing growth David has made the past year, what has really struck me since I have changed how I've been doing speech with him, is the language is becoming so much more spontaneous and generative.

And I'm noticing a whole bunch of things in the clinic. I'm hope you're noticing things at home. Yeah. Just tell us about what are you seeing at home as far as his language?

Rebecca: Again, I'll take the step back. The pandemic was hard and it's been really good for him. It, it was so hard. I, by the end of that school year of shutdown, I was Googling the difference between panic attacks and anxiety attacks to try to figure out out what was going on in me.

It was hard, but to bring all his learning to bring everything together, it was so good. We started a Gemini, an online program and, and he began picking up different sentence structures and expanding that. That was great. One of the things that I've noticed at home, um, in some ways is his echolalia increased, but at certain times he and I go on a walk every Sunday night. And that for whatever reason was a very repetitive time for him. And. I try to strike a balance between allowing him to be him and teaching him how to function in mainstream society. And I don't know if I do it right or not, but I don't like allowing a lot of echolalia and, um, and that walk was just this repetitive time. So bless his heart, we memorize quotes now.

Denise: And you sent me one. I was amazed. It was so long.

Rebecca: We memorize quotes on those walks. And it's really cute. We're not doing it as fast as we did in January because now after about 10 minutes, he'll just say I'm done. And then I'll say, okay, well, what do you wanna talk about? And then we start conversing. And then when he starts picking up the echolalia, I go right back to the quote and, so I don't for good or for bad, but it's, but I, I do think the more complex structure in just even the process of memorizing the quotes and harnessing the echolalia and, and that's something I've really learned with him is to take who he is and allow him to be that, but harness it for, or his growth.

Do you wanna jump? Well, great. Let's get a trampoline. Here you go. Here's here's an appropriate place to jump and we'll do that. You want to chew on things? Well, you can have a straw, that's it? Or, you know, or like we're, we're gonna take what you are, but we're gonna harness it and then you need to be repetitive, okay. Well, let's progress. Let's learn something, more complex sentence structure. In that we also, as a family, we read scriptures daily and we started having him read scriptures and that is more complicated older language and, but he's capable. And I sometimes you just have to think, oh, why didn't I start that earlier?

But just having him do some of the more complex things and you see that at home, I see a lot more independence, again for good and for bad. And he'll start to open up our fence now and go out in the front yard. And so we're, you know, but I also have the greater trust with him, but as he's gaining these skills, he's gaining more independence. He's gaining more confidence. Uh, and he's honestly growing in spectacular ways. People who haven't seen David for a long time are, are noticing now the difference and, and even just little spontaneous things. I took him to a basketball game. I know I told you, he was so excited.

Our university opened up and they had two games and it was limited attendance and bless my mother's heart, she got us tickets to both those games, cuz she had the connections that we did not have. And, and we just, we sat in it the first game and he just looked at me and said, I love basketball. And, but to have him spontaneously express that was so huge.

And, and, uh, you know, and to be able to talk through, I love it too. And we missed it and there was a bug that shut things down, and this was hard. We have done a lot of talking through to kind of help complement his thoughts. I'm very much more conversant with him now than I was probably a year ago, because I see his ability to process it.

Denise: And didn't he like, correct you? Well, you were at the dinosaur museum. You said something and then he, yes. He corrected you cuz you hadn't got it exactly right.

Rebecca: I'm trying to remember. I'm trying to remember what it was, but I asked him what his favorite part of the museum was. That's it was the dinosaur. I asked him what his favorite part of the museum was. And as is typical of him, he said sand. He's capable of saying so much more, but he's so used to just playing under the radar. And so he said sand and, um, they have a, a water and sand table with little dinosaurs that he loves that every time we've gone there he'll play with that. And I said, oh yeah, with the water and the dinosaurs.

And then he said, no, digging in the sand. So at the end, at the end of the museum, and often we would skip that part when we would go. They have basically a big sandbox and it's like a fossil dig and they have digging tools and we don't do that regularly, but I, you know, I was like, oh yeah, well you do, you love the sand and the water table. And then he stopped and corrected me and was like, no, it's this. And that's been something that's really fun is, I am seeing him express um, his opinion and giving a reason behind it.

Denise: And reasons I feel like now he can answer the questions with the stories we're doing. And that was big, that was huge. Who and what, and what was the problem and what did the person do to solve the problem? How did the person feel? He understands and can answer those questions now. And so I feel that is huge for him in conversing and being to answer other people's questions.

Rebecca: And we practice that during the shutdown. So one of the things at school, they aren't moving his reading levels as high as I, as he's capable of, and as I would like to see, because rightfully so, he's not able express comprehension. That was holding him back. He could read more, but they needed to know he understood it, which. I under, I understand, I always want my child to just go and go and go, but I understood that, but he wasn't able to answer the whys and the whens and the whats.

And so he loves looking at pictures on my phone. So I pulled up my phone one night and I sat and I just pulled up a picture. Who is that? And then who is that? And who and who and who for a night. And then maybe the next day, where are we? Where are we? And I started doing that to compliment what was happening at school and what was happening in the speech therapist office was just to say, okay, well, here's, here's what you really need.

I have the ability to do this in a way that others don't. And I remember once getting a whiteboard. I think I sent you pictures of it. When I would write a sentence, and, and the, who was in red and the why, or, and I, I color coded the answers to the questions. And then I would say, oh, who did you go and visit?

And Pat was written in red and, and the who, the question who was written in red. And, and I started doing that to color code and, and to just try to solidify it, um, so that he could show that ability, cuz I know it's in him and that's a child like David, it's in him and it's there. It's just a very back doorway. We read from left to right, he reads from right to left. He sounds out words from right to left and it's in him. You just have to figure out what it is and then say, okay, well, let's, as long as you get the whole word out, I don't care if you're do the Hebrew way and go right to left, we're gonna take it and we're gonna run with this and we're gonna do it.

Denise: And he's doing it. I had great hopes when I began teaching him stage one sentence types. And what these past podcasts about David have been about, but I actually underestimated how far he could go. I've been blown away by the way he's using because when he tells stories and the way he's answering these comprehension questions and the conversation that is coming out, I'll probably come back in a year and we'll talk about David some more because I, I think there are so many open doors now with the increased language.

Is there anything else you would like SLPs to know? Because there have been so many SLPs who have worked with David, some who understood what he needed, some who didn't, I've been on both sides. When I first started, I didn't understand what he needed, now I do. And in my journey with David, there have been times when I haven't. I've gone back and forth, but I just think that if we connect better with parents, we serve the child so much better. So what would you like SLPs to know before we wrap up?

Rebecca: Oh, first honestly, thank you. You are such an important part of, of David, of his progress, of his abilities and from a parent, you see the best and the worst of us. I am sure it, it's not an easy journey as a parent. It's a beautiful, wonderful, joyful journey.

There's so much joy, but it's hard to, and to just acknowledge it. You are an important part of this journey. So first I would say thank you. And then I've said it before, but I would say, oh, always get to know the child first, always more than a, more than a label, more than a diagnosis. Get to know that child. Once you connect with that child, you will open doors that you won't otherwise be able to open until you understand that child. And listen to the parents, we're a bit crazy, I get that. We can be in denial or not in denial. We can be overly optimistic, all of that. And I get that and I, I promise, I know his teacher. I think she likes me and the likes me. The district doesn't, that's okay.

We're gonna fight our battles. And, and it is, it's an exhausting experience. It's beautiful and it's exhausting. So listen to the parents because they do know the child in a way that you, that you don't. Don't dismiss the parent's opinion ever. How many times if my child can do this? No, no, your child can't or, well, no, that's just compartmentalizing. I'm like, no they're doing that everywhere.

Really do listen to the parent, even when you don't agree, listen to the parent and understand where they're coming from. I do think we do a disservice to the parents to not recognize. Yes, there's a smile and there can be optimism and strength. But just to say, this parent's walking a journey that, that few people know.

And so listen to them and respect it and, and it's okay. Be positive. I never, you lose me the moment someone says, oh my goodness, how tough. I would never want, I would never want that. You're gonna lose me right then. Why don't you just listen to the parents and, and hear their experiences because they're good, they're raw, they're real. Um, but these children are amazing and they're worth the price that we pay.

Denise: I cannot think of a better way to wrap up than listen to the parent, respect them. And these children are amazing. They're worth the price that we pay. I love that quote. SLPs, if you're interested in the method I've been using with David in the past year, hop on over to essential language autism.com or you can go to SLP proadvisor.com/ela.

For a quick start guide in other resources, it really is, now I'm really being serious here, it really is the most amazing method I've come across in 30 years of being an SLP, which is why I'm so eager to share it. And the beauty of it lies in its simplicity. Till next time, this is Denise Stratton with The Mindful SLP. And remember when you master the simple, the complex takes care of itself.

Dan: Thank you for listening to The Mindful SLP. We hope you found some simple tools that will have optimal outcomes in your practice. This podcast is sponsored by SLP ProAdvisor. Visit SLP proadvisor.com for more tools, including Impossible R Made Possible, Denise's highly effective course for treating those troublesome Rs. A link is in the show notes. If you enjoyed this podcast, please give us a five star rating, and tell your fellow SLPs. And please let us know what you think. Join the [email protected].