Sensory Processing Disorder With Intellectual Disability

[MUSIC] Welcome to the little cerebral. And we're going to continue to talk about intellectual disability from the viewpoint of more occupational therapy and how you approach intellectual disabilities compared to disabilities or diagnoses that are more around processing issues like sensory processing disorder, autism, just developmental delay, diagnoses like that. So, I'm sorry. Oh, hi Claire. [LAUGHTER] I just noticed you haven't said a thing about many glasses. Oh, did I not? Okay, Claire is wearing these very hip glasses. You know what? That's so funny. This is where like my social inability to come in because I was like in my head I was like, oh, those are really cool glasses, but I never said it out loud. And then I assumed that I said it. I might maybe I'm offended that you didn't say thank you, that I never said it out loud. No, very cool glasses. Those are really cool. You look very professional. Thanks. I'm totally just fucking with you. I don't care if you notice my glasses or not. Oh, Matthew. I definitely did notice though. Very hip. Very hip. So yeah, okay. So the difference when you approach it from a therapy point of view is really ultimately what we want for all of our kids is for them to be able to live their best lives. And a lot of times how we do that with children who are have a developmental delay or have something that they're struggling with is we try to change how their brain processes information. And that goes from the regulation standpoint where you're trying to get information to process more efficiently through the brain stem and then up through the midbrain and then into the cortex. And when you have children who have diagnoses of like sensory processing disorder, developmental delay, dyslexia, things like that, it is often assumed that all of the brain structures are intact. So every part of the brain is able to communicate with all the other parts of the brain is able to communicate with the rest of the nervous system. There's nothing impeding or impinging upon communication between all of the areas. So everything has the potential or the ability to function as effectively as it should or could. Now with an intellectual disability, and again, we kind of touched on this last time, but you really do need to talk to a neurologist or you need to do additional testing to really determine this. But oftentimes with an intellectual disability, there can be a structural difference in the brain that can impinge or impede communication between the different parts of the brain and then also from the brain to the nervous system. And that can be difficult because from a therapy standpoint, you might not be able to change the brain as you would be able to with just like a processing issue. And although you can try, oftentimes the approach is a bit different. So when you have a child who has sensory processing disorder, the approach is you do therapy until the brain, the child's brain and the central nervous system is able to communicate independently by itself as efficiently as possible. Now with an intellectual disability, the structural point of view could be that you can do therapy. Hold on one second. Todd, are you going to be in here right now because I'm recording something? So like, I had a podcast. Yeah, Todd, welcome to our podcast. I just told you I was recording a podcast because you were going to go upstairs. Do you want to be a guest? Okay. Like what do you think I'm doing? You think I'm just like talking about sensory processing sort of the hell of it? To myself. Just to keep myself sharp. You'd have people look in the mirror and they're like, there's like a joke about doing positive self-talk in the mirror. Like what if you just instead of a mirror because it's like modern times, you used your phone and every day you just like gave yourself, but I just like quizzed myself to make sure I'm on my game. Okay, I'm going to, well this assumes that that's what I'm doing. Oh my god. Okay, so that happened. Now like I was saying with an intellectual disability, you can't assume or you'll have testing done that will show that not all the structures of the brain are intact or they're communicating properly and perhaps they are, right? But when you have an intellectual disability, you can't assume that the brain is going to change and make a permanent change. And so for like I was about to say, you know, for a child who has just a processing issue, again, you do the therapy so that they can then process information independently and then build upon those skills so that they're independent. With an intellectual disability, if the brain structures aren't intact, you can do the therapy like you can do the things and the activities that help with, for example, regulation. So processing efficiency at the level of the brains, them, but once you stop that, it may not stick. So you might not get a permanent change. So basically with an intellectual disability, you might have to continuously do therapy. Keeping that in mind, if your child has an intellectual disability, you know, it's up to the parent to pursue further testing in terms of going to a neurologist or not. And I think the benefits of going to see a neurologist are that you would be able to determine whether all the parts of the brain are intact. So your approach with therapy, like when you're taking your child to occupational therapy or speech therapy or anything, you know whether there's a really good chance that the child's brain can change permanently, like rewire permanently, or that the brain will have difficulty doing that, so you'll have to do continuous therapy. Because in that case, it's more, if your brain is unable to change your rewire. And that's not to say that you won't make any progress. It's not to determine anything really. It's just to keep in mind, like, but that approach might be more remedial versus, like, I want to get my child to hear to this levels and then have them be independent versus, like, let's get them them to this level. And then we might be able to maintain it with this amount of therapy service. Does that make sense? Yeah, it does. I was just thinking about, like, could you define when you say structures intact? Can you define what you mean by that? Yeah, so that's all of the different parts of the brain that need to work together to be able to process the information that comes into the brainstem, making sure the brainstem is talking to the midbrain, is talking to the cortex, and then you have all of these parts within that, like the cerebellum, you have, you know, all of the parts that involve, like, the vestibular system, all of the parts that involve, like, language, all of those parts, to make sure that they're all, and by intact, I mean, that they're, like, present, they're able to communicate, you know, if there's damage to one of those parts of the brain, then, you know, you either, the brain either has to rewire kind of, like, around that area or find a different approach. But, like, as far as I have been told, you know, they haven't figured out that the brain can rejuvenate those damaged areas, and perhaps they can. I mean, I'm always a firm believer in, like, neuroplasticity, and it's not to say that you can't rewire the brain, like, around a part of that damage, but essentially, by intact, it means that all of the parts of the brain that needs to communicate with each other can. Okay, yeah, I just wanted to make sure that we are clear about that, because, like, I mean, because it could sound as though you're talking about, like, there's an injury to a part of the brain, which there could be, right? I mean, you could have that, and we're talking about intellectual disability broadly, but maybe there was something that happened, right? An injury to a particular part of the brain because of a brain injury, right? Okay, right, but it's when you're saying intact, you're not talking about a particular structure. Like, what you're talking about is in the circuitry, like, the communication, the wiring between neurons in specific parts of the brain, and how that communication happens, correct? Yes, but I mean, that being said, if you do have a diagnosis of, like, fetal alcohol syndrome or a traumatic brain injury, then within that diagnosis, it can imply that, you know, part of the brain does have some structural damage. And when you have structural damage within the brain, then it's also implied that the neurons, like, how they're connected to each other and communicating with each other is also going to be impacted by that. A lot of times, I'll see each other who have an intellectual disability, but there's no further diagnosis and there's no indication of a structure of structural damage. But at the same time, it's very challenging to make progress. And like, I don't know why, it just, and it could be that maybe, you know, part of the brain, you know, the circuitry isn't there between two parts. I really don't know, but I've found that for children who have an intellectual disability and there's, you know, no indication or nothing's been found that parts of the brain are damaged, that there still seems to be difficulty making progress and maintaining that independent level. And this could be like a child who's been, you know, trying to read for 12 years and still has been able, like, is still unable to read. And that's a very specific skill, but even in terms of regulation, you might find that you can do all these activities or you have this program you do with your child they're able to regulate but as soon as you don't do it consistently then the child becomes just regulated again and that can happen over like a number of years. Yeah and we talk about yeah I just wanted to be so I guess let me back up so number one I just wanted to be clear that we weren't talking we weren't trying to imply that intellectual disability would do to damage to the brain that that no it's very broad but it's very broad but yeah but that yes we're speaking about it broadly and broadly we don't we're not saying that there's damage to the brain there may be in specific circumstances but that's not but damage to the brain is not what intellectual disability when we're speaking broadly means and then the second thing I was going to say is like yeah when you look at so when kids who have so we remember we use the word identify for special education in schools and we use the word diagnosis for medical and medical includes any sort of provider including a psychologist it doesn't mean that you have a quote unquote medical degree it just means you're practicing in a medical capacity right like something that is licensed and regulated differently so when kids are identified as having an intellectual disability in the schools a lot of times we talk about something called yes why or extended school year and we talk about you know what what makes that necessary and usually there has to be a documentation that kids regress because a lot of kids with intellectual disabilities and I'm not saying all but a lot will lose the information over the summer that they have learned previously because they're not getting those consistent services so I guess I'm just backing up what you're saying I'm just saying oh yes yeah we speak in the schools from an academic perspective and that would be consistent with what you're talking about with sensory treatment sensory issues sorry I just actually kicked my dog that's why I'm not sitting I forgot to move down here but I think that's why like as a parent it can be helpful so that when you are going into an occupational therapy setting to get those services that you can say like you know I know that my child has an intellectual disability like here's where I want them to be I also know that consistency of services really does make an impact so how can we build this in a way where they're getting consistent services so we can maintain this level or grow to whatever level we want and then plan ahead for how we're going to continue these services so that those skills are not lost so it's always better to advocate and know as much as you can going in as a parent versus like kind of waiting for the therapist to tell you because you know they may or may not just be thinking of that you know to be honest yeah I mean and I think the same thing is true I mean I've heard of I have to be thoughtful about how I say this just because I want to make sure I'm not violating confidentiality I've heard this was not a client of mine I just I heard of a case where and it wasn't like why I heard of this extreme case that was so unusual it's just something that I remember hearing about recently with a speech therapist who had seen a client who is there still seeing the client who is now an adult but they'd seen them continuously since childhood because again it gets back to that without that that the continuous services that people will I mean and it doesn't the people will make or that they will regress and it doesn't mean that that person would go back to having no language it just means that in order to keep that progress going that's what they need to do and and I think that so we've talked a little bit about community centered boards which are the places by you know county by county that provide services and there's you know the Medicaid waiver and there's lots of other just different programs that help families and I think this is why right because there's this recognition that this isn't going to be like you know a few months of therapy or a year of therapy and when I say therapy I mean like speech therapy or OT and then you know everybody will get what they need and the families will have the skills they need to help you know make changes and then maintain those changes like really there's a recognition that it needs to be ongoing services right yeah yeah so that's from a therapy point of view how to kind of think about it I guess yeah well that's really helpful for me as a parent I mean just you know I'm I feel like even though professionally I've been in this world for a while it's a completely different experience when you're the parent and yeah I like I feel like I'm even though I know some of this stuff I'm relearning things because I have to learn it from another perspective yeah and and I have to say for me personally and I think this is you know obviously very individual individual I talked about in the last episode like how you know it was hard to process and all of that and that I was frustrated and what I wasn't frustrated about what the thing I was frustrated about was not the disability it was just the amount of advocacy I was having to do to get my son what he needed and I didn't necessarily mean well a part of it was school but I always felt like his team was on our side and like we were all on the same team you know like that's not what I mean I just mean it's just exhausting because you're constantly trying to figure out okay what do they need and then they need this and then I have to do this and then this and I think that that can be like I said really draining for parents but on the other hand I do think that there's this piece where you know something's not right you know that what you're doing isn't sufficient and so sometimes I think like at least for me when I realized for sure what was happening there was this also this big sense of relief like okay now I know what to do and we're not totally out of the woods yet because I am getting him evaluated for autism because he's had like I've mentioned he's had some pretty significant characteristics of autism there was just that you know the the the social interactions never looked quite like they met criteria and then I had to like take a step back as a parent and say yeah but how much accommodating am I doing on an everyday basis right like I'm not seeing this because I can read him and I know this and then what's his language really started improving which has been like the last year I started seeing a lot more scripted speech like a lot more and so now I'm like okay yeah I definitely doesn't mean he has autism but there's enough red flags that I'm like yeah he would evaluate and so and we're looking at other things as well including some genetic syndromes that could be and that's the one so we're still not out of the woods because we have our evaluation at a hospital for children's that I won't identify the name of because I think I want my chocolate yeah you can do it for all you want but I'm not going to go for children's hospital yeah well no I'm not saying it's children's hospital I'm saying it's a hospital for children that exists in call right because like in a double I was a little too presumptuous work let's please not assume things um okay sorry because I'm in I don't want to necessarily identify specifically legally where he's being evaluated because I also want to talk about the process would be really interesting from a parent the cost the cost like I my son evaluated for three hours and I know no sorry two and a half I know what the reimbursement rate is for me using those exact same procedure codes and I would say sorry now I shouldn't say me I should say my practice because I never get to keep you all the money like with overhead taxes right like I don't yeah it's a lot less but um I would say like the overhead or like I think the reimbursement rate for my practice would be something like I think I said 280 total and that might be a little high um because I'd to look it up for the exact same insurance company that I accept insurance from and there's the same insurance company that we have and for this hospital that serves children the rate they have a different negotiated rate seven hundred and eighty something dollars for two and a half hours yeah and we have a whole half a day of testing at least plus report writing plus genetic testing um I'm pretty sure we're gonna meet our four thousand dollar deductible pretty quickly yeah um my gosh they have a different contracted rate because they're a hospital so I uh was pretty frustrated yet yes um trying to be kind of understanding at least you don't have an arresting bitch face anymore oh can we call it resting bitch face if I look like I'm smiling inappropriately um resting in appropriation of it smile. And of the purpose pile face. I'm going to have to make sure I'm really like trying to like channel my inner anger so that I at least get to the neutral. I'm doing therapy. So what I was going to say is that maybe think like okay I spend it's a little frustrating that I'm going to have to pay that much on the other hand I like spend all this time trying to find other ways to save money except for things like Botox for resting the chase. But I tried to find all these other ways to save money. I mean especially when it comes medical costs because I mean like potentially if we weren't doing some of the things we were doing it would be unbelievable how much money we'd be paying for a medication and everything. And I was thinking we should do an episode on ways to save money because I bet there are tons of families out there that have like little ideas or tricks that they use. I have some things that I know about that are really helpful and I think have been helpful to even some of the families I've worked with when I've suggested stuff like good Rx for example. And then I was thinking what if we asked people to Facebook message us that a little sorry or should they email us a little cerebral at gmail.com? Is that our email address? I think that's our email address. I think it's a little bit at gmail. I think it is. I think it is. Yeah. I'm proud of you to check that more. Yeah so now that I know we're requesting this I'm just going to ask people to maybe send ideas for how they save money from medical cost because this can get really expensive for families and I have some of my ideas and I thought maybe with some of that and some of the stuff I know and I can ask around like with some other professionals that I know maybe with all of that information we could have an episode on like cost savings because I sure that's really important for people. What do you think? Yeah I think that's a great idea. Okay so maybe like in six weeks when we record our next episode realistically. Now I know we'll do it before then but it could be six weeks. I mean you know it'll be between two and six weeks from now. Between two and six weeks. Plus or minus a year. Plus we can't really do minus a year. Just let me hear minus a year. Just minus a year. Yeah. Yeah. No just plus. Yeah that'd be great. Yeah submit to email and then we'll talk about it. Let's do our next episode on that. That'll be great. But yeah. Okay all right great well you know. See you later. All right well thanks for chatting. Yeah. Thanks for admiring my glasses and then I'll ask you. So welcome. You're welcome. All right I'll talk to you later. Okay bye. Bye.