Cultivating hope with ABA: Behavior managment strategies for SYNGAP1 patients

Here are our introductory comments: 

Elemy Yeme is a Board Certified Behavior Analyst (BCBA), cofounder of ElevABA LLC, and most importantly, Jaxon’s best friend. Since 2015 she has worked with individuals diagnosed with a variety of developmental, neurological and learning disabilities. She specializes in creating greatly individualized treatment plans for individuals with behavioral challenges, and has an undeniable passion for improving the lives of the clients and the families that she serves. Her particular interest is to find effective behavioral interventions for those with complex developmental disability profiles and learning needs with a comprehensive knowledge approach. She holds a master’s of education from the Arizona State University, and currently resides in San Diego, California. In her free time, Elemy likes to camp, read, and play with her dog Hula.

Please note that this information does not create any patient-provider or client-professional relationship, and should not be used as a substitute for professional treatment. All Content is for informational purposes only and should not be construed as specific therapeutic advice for your situation. For individualized advice requiring a BCBA, please contact one in your area.

Follow Elemy on twitter: https://twitter.com/elemyyeme

Transcript

Monica: Elemy Yeme is a Board-Certified Behavior Analyst (BCBA), co-founder of ElevABA LLC, and most importantly, Jaxon's best friend.

Since 2015 she has worked with individuals diagnosed with a variety of developmental, neurological and learning disabilities. She specializes in creating individualized treatment plans for individuals with behavioral challenges and has an undeniable passion for improving the lives of the clients and the families that she serves. Her particular interest is to find effective behavioral interventions for those with complex developmental disability profiles and learning needs with a comprehensive knowledge approach. She holds a master's of education from Arizona State University and currently resides in San Diego California and in her free time Elemy likes to camp, read, and play with her dog Lula. And just want to put a public statement out there that Aaron and I have given Elemy Yeme full permission to use Jaxon's name or to refer to his treatment plan and I'm super excited to introduce Elemy. She entered our lives nearly five years ago and I thought I was a proficiently trained ABA parent and goodness we've had a lot of learning to do but our family is forever grateful for her teaching and just making sure that the whole family is involved and that we're providing the best treatment plan for Jaxon. And I'm super excited that she's here to join us.

I'm just going to read one last disclaimer before she gets on the road to her presentation: please note that this information does not create any patient provider or client professional relationship and should not be used as a substitute for professional treatment. All content is for informational purposes only and should not be constant construed as specific therapeutic advice for your situation. For individual advice requiring a BCBA please contact one in your area and please check the chat box as we will be posting a full disclaimer for today's webinar. And at the end of the presentation you'll have an opportunity to ask your questions by writing them in the chat. And a recording will be made available on the SRF website. We now proudly introduce my wing woman, right hand woman, Elemy Yeme, BCBA. Here we go.

Elemy: Good morning everyone and thank you so much Monica. It really is my pleasure to be here today. I'd like to thank everyone for all the support and collaboration that goes into making this happen. Thank you to SRF, Mike and Ashley for tracing the road map for everybody. Thank you Sydney, Monica, Aaron, to all of the parents I have had the privilege to speak with. It really has been such an inspiring time to watch how far parents are willing to go. I am just forever grateful for the opportunity to be part of it all. Special thank you to my team: Sheena, particularly Kelsey who diligently worked with me to put this together, and most certainly thank you to my husband who allows the walls of our home to become research symposiums. Thank you all so much.

I am incredibly excited to be here today to talk about this unique and fascinating combination of Applied Behavior Analysis on a rare genetic disorder that is SYNGAP1. I know that when Applied Behavior Analysis is talked about people have an opinion, an idea, some people may not have either wherever you stand that's perfectly okay. I'm not here to bore you with technical jargon or tell you why ABA is or is not amazing. I will go over a very basic overview of ABA but what I want to talk about is why. Why should we want to know about ABA and its possibilities with Syngap and behavior.

So here's where I'm going to ask you not to shift but rather to be open to this perspective. To allow yourself to welcome the possibilities despite your current reality or circumstances. So why? Why do we think that this perspective of open mindedness and possibilities matter? And I'll tell you my 'why'. I think that all of this is particularly important to be discussed because I wholeheartedly believe in making quality of life a priority. In fact, the very nature of ABA requires it. ABA by definition is a science in which tactics derive from the principles of behavior are applied systematically to improve socially significant behavior and experimentation is used to identify the variables responsible for behavior change. So from this as an ABA provider my focus is improving socially significant behaviors and it is absolutely socially significant that every single one of your children and all members of your family experience quality of life. I support the families I work with to value quality of life as a focus of intervention and a treatment outcome, not only for the individual receiving it but for the parents, the caregivers, the family as a whole. So it is exactly in this connection between the definition of Applied Behavior Analysis and my personal value of quality of life which guides my practice that hope is found. ABA treatment is based on a science that focuses on social significance and that you can implement now. I'm going to say that again: ABA is for treatment for right now based on a science that focuses on socially significant change. Is treatment easy? Certainly not. Is it a one-size fits all? Is accessibility hard? It is very hard. We're all working on it. But bottom line: it does exist. It is possible and that should give us all hope that circumstances can be improved. It is just such a powerful place to start to know that.

And of course you're probably going to ask now how, where do I start? How do I change my circumstances? How do I improve my quality of life? And I have to be honest: I could talk to you about this for hours but we only have about 30 minutes. So I really try my best at categorizing the information in a way that is hopefully useful to you and that it gives you a place to start but know there is so much more to know and so much more to do. This four-step list is by no means exhaustive.

So the way to start is following these four steps: restructure your mindset about behavior and behavior management; approach Syngap's
multiple variables comprehensively; understand the function of the behavior; and learn to teach.

So step one: restructure your mindset about behavior and behavior management. This means to firmly believe that your child is capable, that your child can learn and that the challenging circumstances of caring for your child with a rare genetic disorder do not mean that those circumstances are unchangeable. It means accepting that Syngap is not the sole reason or cause of anything your child does and is especially not the sole reason or cause of behaviors. The term "Syngap snap" is somewhat representative of this idea that behaviors kind of come out of nowhere and they may seem unexplainable and i use it but it's truthfully inaccurate behaviors do not come out of nowhere and to think that we have no control or influence over the environment or the child's life is simply wrong we need to start shifting our focus from the behavior itself to the underlying causes of the behavior it is really easy for us neurotypical people to forget that our kiddos don't learn the same way and to do and to make assumptions about what we think they know but they're just that assumptions. It was recently brought to my attention that a family was experiencing severe maladaptive behaviors in the morning immediately upon the child waking up and while there are a lot of things to consider one of the things that I first brought up was how we taught the child to wake up this is a very clear example of how we make assumptions and we miss opportunities to target skill deficits we assume we go to sleep we wake up it stayed out and it's a new day no big deal but what tells us that our child knows that infants typically wake up crying going from a sleeping state to an awake state can be pretty overwhelming if you don't understand that transition or if you don't understand the world that is going on around us.

So now skill deficits are not impossible challenges. They're just opportunities to learn. They're very important. They're an essential step to address the underlying causes of the behavior. So then when we accept that Syngap is not the sole reason or the sole cause for behavior and understand that our child is fully capable of learning then we are able to recognize that we have some control over the environment and over our child's behavior. Once we develop this perspective then we must must must add expectations. Adding expectations literally means that you have expectations of your child know that your child can learn and with that just how you would have expectations of your neurotypical children you should have expectations for your child with Syngap. Set the expectations and make them high. Make them high but realistic. Make them achievable. Treat them like they are capable because they are. Unless they have proven to you that they are not that there is a clear barrier physical, biological, neurological, a clear barrier. There is no other reason for you to believe that they cannot accomplish something. You really will be so surprised by the things that they do.

And I'll share a story so that I can better explain what I mean. I was once told that my client couldn't walk more than a few minutes and that my 100 pound self needed to push his 150 pound self in a wheelchair for hours during community outings otherwise he would drop to the ground and not move until mom came. I went with it for some time but I did question the assumption why can the kid walk more than a few minutes. In fact, he can walk. So if he can walk why can't he walk? I was very confused now fast forward some time to the last interaction we had to that with that wheelchair that we pushed around for so long we i used it to go to walgreens to get a flu shot and i used it because i figured it would make it easier to get that new and hard task of getting a flu shot easier. So whatever. We got the flu shot and then afterwards we walked to Starbucks. Walked to starbucks. Next door now pushing the empty wheelchair we got our drink whatever walk out left the wheelchair at starbucks went back home whatever. Over the next several days we continued going on community outings. We went to stores and through outside any other places and we only ever realized the wheelchair was missing because the very kind people from starbucks reached out to the mom three days later. Three days later. I guess she had left um the paperwork from the flu shot there and they were able to get her information, reached out let her know that they still had the wheelchair and that they thought we would so urgently come back and get it but we never did. Because we didn't even notice. We don't ever need it. Never. So as you can see it turns out this kid can walk more than a few minutes. So shift your mindset. Your kids are so capable. They are capable of learning and are meeting realistic and high expectations. They are capable of this when you set those expectations, when you recognize and seek to understand the many variables that contribute to your child's behavior and when you take control over the environment. 

Now this is not to say that Syngap is not important. That could be not farther from the truth. It is only to suggest that you don't use the diagnosis of Syngap as a way to justify the challenges you face with your child and let that prevent you from taking action. I am suggesting that you can improve yours and your family's circumstances by controlling your own actions and changing your own behavior. So to do that we first need to understand Syngap as of course as much as the literature currently allows and that leads us to step 2: Approach Syngap's multiple variables comprehensively.

Understanding Syngap, its symptoms, genotype, medical phenotype, behavioral phenotype, etiology and each individual child's history is a very hard task. It is hard because of all of the increased number of variables that you have to consider but just keep in mind they all matter. All of the variables really matter and while Syngap certainly predisposes your child to different challenges, many environmental variables influence how these predispositions present themselves. In the words of griffith scandal i can agree people and behaviors are complex and the end result, even in the case of behaviors that are associated with a genetic syndrome, is most often due to an interaction of genetic and environment variables. So understanding your child with Syngap absolutely presents its own unique set of challenges because it requires understanding many variables. But if we look at behavior as a product of both neurodevelopmental and physical limitations as well as the individual's learning history then we are able to identify interventions that successfully address skill deficits and that change the way in which the environment influences the behavior.
All of this to say: be hopeful because no matter where you're at, your child's life your life and your family's life can be improved through changes that you make to the variables in your child's environment. And I have here a non-exhaustive table of some of the variables to consider on one side I have Syngap symptoms pulled straight from the SRF website and on the other side I have other variables that I have found very important to be considered. This is just a visual representation and I show you this not to overwhelm you but to encourage you to understand your child comprehensively. All of these symptoms and variables have the potential to offer insight into how your child takes in, processes and responds to their world. They help you as a parent and me as a clinician to identify what to do, what strategies to use, and what providers can collaborate on.

Okay Syngap is a very unique rare disease that manifests very differently in every child. Every one of them experiences their own combination of Syngap symptoms and variables. So there is no one-size-fits-all treatment. There really isn't. It is both the responsibility and the privilege of your child's provider to comprehensively understand your child, to understand Syngap and to make their best effort to comprehend its many variables in order to guide better treatment outcomes. So in adopting this idea of a comprehensive approach collaboration among providers is critical. It's critical to understanding this many variables and achieving optimal health for your child. While I approach Syngap from a behavioral perspective, other experts, other clinicians provide information about variables to me that is very important for me to consider in order to provide effective behavioral services. As a behavior analyst I treat behavior based on its function. So within all of these variables like exactly that, the function of your child's behavior and that's gonna lead us to step three: Understand the function of the behavior. The function of the behavior is really nothing other than the reason. The cause of the behavior. Essentially why is the behavior happening. The cause or reason of the behavior gives us important information about the child's physical and mental state at any given time. Understanding the child's physical and mental state allows us to more successfully manage maladaptive behaviors. The function of the behavior also gives us information about the child's tolerability, motivation, and irritability and even allows us to identify some of the skill deficits that we're missing.

So I hear a lot of the parents say that behavior just comes out of nowhere but there's always a reason. Behavior does not occur randomly and it is not purposeless. There is a reason. There is a cause. We just have not identified it yet. And then these reasons can be very, very, very hard to identify. Sometimes they're internal variables that we can't see such as seizures or for pain for those that who are non-verbal, hormones for teenagers. Sometimes they're more straightforward like hitting to get parents attention or dropping to the ground so that we don't walk through the store. These variables, these reasons, they're endless but they do exist.

So now we have to ask the question: how. How do we identify these variables? How do I determine the function of my child's behavior? In ABA we take data. Massive amounts of data. We make correlations and we take on the very personal and very rewarding task of getting to know the child that we work with. We pay extremely close attention to the details and as you can see on this slide, we mean it. We really do. These are actual pictures of my team's environment when we attempt to understand these variables and this middle picture I wasn't lying about making size wall research symposiums at home. That's actually live on my home. We do all of this until data gives us useful information. I'll tell you an example. I had a client who had this behavior we were treating and it included dropping to the ground to avoid a task. With data a correlation was made that dropping behavior happened more often with constipation so knowing that and taking that into consideration I changed my treatment approach and we were significantly more successful in treating that dropping behavior. So when we take data it allows us to make connections between the variables that we are taking data on and the child's behavior. It allows us to look at the facts and to reach more objective conclusions. Objectivity is a critical component in order to mediate the environment we have to be objective so once you pinpoint the function of your child's behavior then you can successfully manage it by control controlling relevant variables, ruling out on important variables and targeting skill deficits through teaching. Doing all of this ultimately leads to better treatment outcomes, better responses from the child and enhanced quality of life. Before we can teach of course... here are all of the variables in data collection... before we can teach, we must first provide an optimal learning environment and build instructional control and that leads us to step four: learn to teach.

Optimal learning environment. An optimal learning environment is an environment responsive to the needs of each child. It emphasizes positive relationships, 
supports each child's own agency, it encourages them and it leverages their individual strengths. A child having seizures cannot successfully learn. A child in distress, in pain or discomfort cannot successfully learn. So once we have considered all of the variables we talked about and we have attempted to control biological and physiological factors to the best of our ability with the collaboration from all of your providers and a collective effort then we can begin to ask things of your child. We can begin to teach different skills. In order to successfully teach these skills to your child you need to know exactly how your child learns. You need to find the specific strategies that work for your child and their learning modality. Based on this understanding, your understanding and knowledge of your child's needs differences and preferences, you can leverage their strengths and when we build on their strengths we're able to positively support and enhance their learning.

A fundamental step in teaching or successful teaching and trying to prevent maladaptive behaviors what we are trying to successfully teach the child is to build this instructional control. Instructional control simply means to build a trusting relationship between your child and yourself. Having instructional control means that your child listens to you because you have a positive working relationship and that simply they just trust you. They trust you so much they'll do it. So instructional control is the absolute most powerful thing you guys can establish and you can do that as a parent starting now. So if there's anything to take away from everything that I have said build instructional control. That's your number one step and well I can't walk you through the steps of building instructional control for the purpose of this presentation, the article "seven steps to instructional control" that is going to be included in the resources I believe you'll receive after the webinar is a very clear guide on how to build instructional control for parents.

So I so wish I could tell you that there was an easier alternative. That we knew more about your child's condition. That you didn't have to fight your neurologist to acknowledge your child's seizures. That you didn't have to fight your teachers and districts for appropriate placement and supports. That you have access to every treatment and every therapy that you need. But I'll be severely lying to you. It is unfortunate but you, the parents, the caregivers, have to do the work. You have to fight for your child. You have to raise awareness to educate yourself and others including providers and to build your own... your own tribe for your child. To advocate for your child's rights and to demand what you and your child deserve from every type of service that you receive. 

Parent involvement is particularly important in ABA. It is well documented in the literature that parent involvement is an essential component of effective intervention. If the parent doesn't actively participate in teaching, ABA simply doesn't work the same. ABA is just not a... it's not a pill. It's not a pill that we can give you and fix your problems. It is not a cure. It is rather a way to facilitate improvements in your child's health and for you and your family to live a less stressful, less tiring and more fulfilling life for yourselves. It is exactly because parent involvement is essential that I believe ABA can be beneficial to you even if you don't have access to those services yet. ABA treatment is human to human interaction. It is day in and day out. It's patience. A lot of persistence and this it's home right now because of our circumstances with our own clinical team but it's an endless desire to success. So endless you literally always believe there is a way. There is there is a way. We just have to find it. Not available does not mean never available. Not existent just mean nothing is non-existent it just means we lack knowledge. It simply means it's unknown and we have to find that. We have to fill in those gaps and take on that task as our science continues to develop so that our current circumstances can be improved right now. We all have to collaborate but at the end of the day it is you the parents who hold the most power and ability in making a difference in your child's life. So I just gave you a few tools to get started but now you have to act on them. It's not just gonna happen.

So to conclude: essentially these four steps will provide you a framework for behavior management that is scientifically based, that focuses on socially significant behavior and that it will improve the quality of life for you, your child and your family. And the last thing I have to say is it's true: nothing great ever came easy. And ABA is not easy. Restructuring your mindset about behavior, comprehensively addressing Syngap's multiple variables, identifying the function of the behavior, and learning to teach is not easy. I am by no means suggesting it is but it is possible and the question I would encourage you guys to ask yourself is: which one's harder? So with that we can open up the room for Q&A.

Sydney: Awesome Elemy. Thanks so much. We've got some really kind comments already coming in thanking you for what you've shared with us and for the hope that you've given most importantly. So I will go ahead and open us up for questions and answers. You guys will see that at the bottom. It's the question and answer button. If you would like to go ahead and type something in there to ask Elemy but our first question says: how do you manage when one of the parents is involved and the other parent is permissive and don't follow the guidance? And sorry I just want to say as well hey Monica especially because you have so much personal interaction with Elemy if there's something you'd also like to chime in and say about your personal experiences please feel free.

Monica: Absolutely.

Elemy: All right so how do you manage when I guess parents appear in disagreement a little bit? Then it it really depends. Like, if you're asking me as a BCBA that I would take that on myself on related to clinical recommendations and each parent just how we treat the child the parent is part of the treatment. So also I do implementation on the parent and depending on where the disagreement lies I will look for ways to get the parent who needs to get on-board on-board. So it's kind of like just the same way that you are doing specific strategies and specific implementations to get your child to do something, you have to treat your either partner or the parents the same way. Just telling just like you wouldn't just tell your child to stand up when you know they don't understand you to stand up you can't tell the parent you just have to do this because it's just not that simple. So you have to look for ways to reach that inside of the parent if that makes sense.

Sydney: Yeah like if we are maybe finding ourselves in this situation where we might have a spouse and our RBT, our therapist hasn't actually reached out to share these things with them would you suggest that you take it up with your RBT and say "hey I'd like to see if we can get my partner or other caregiver more involved".

Elemy: I would reach out to your BCBA. Okay the RBT is... all of the programs come from the BCBA so you could let your RBT know "hey will you let BCBA know that I would like to target this" but the RBTs are not equipped to make those decisions or program for anything like that. It would have to come from the BCBA so I would recommend you reach out to them.

Sydney: Sorry Monica did you want to say something as well? I think I cut you off a bit.

Monica: Yeah I was going to say not only the spouse or the partner but also if you have children or young adults in your home. Our daughters, young adults that they are, they have been "trained" per se. We have meetings with Elemy in the evenings for the family. We literally sit together at the table and talk about our challenges and her approaches and she coaches us through it because we all need to be consistent in saying, acting, doing the same same thing so that Jaxon just needs complete consistency and I think all of our kids do so.

Sydney: Great. All right so our next question says... by the way another person saying that the webinar was amazing but the next one says the place where I stay does not have ABA therapists so where and how can I start? 

Elemy: Well to start with ABA there is a lot of ways that not a lot of ways a lot of things that need to be considered, diagnosis, all of that. But really if you as a parent which was- that was the message I really was more important most important for me to send, that you don't need to have access to the services to get started. You parents ultimately are the ones that are required whether you have treatment or not, to be able to implement all of this. So where to start? Here. 
With the resources that we're going to send out. Start with that instructional control. Building this network. SRF is doing great. It's doing great efforts and keeping this network of BCBAs and collaboration. I've been contacted by a few parents. I'm happy to share resources. Eventually we're hoping in summer we have a parent training curriculum that everyone can access online. That's what we're doing, my company ElevABA. So hopefully we have a good like bundle: here's where you start, this is how you do it, if you don't have access to services yet. So that's how. Really just start reaching for the information. Start reaching out to us. Let's start really building this community. This is really our collective efforts and our collective goal.

Sydney: Awesome. I just want to speak to the fact that you said you have resources for us and we're still working on figuring out the best way to get those out to everybody who's attending but it is something that we'll get out to you. Elemy has made a compilation of things that she think will be most helpful to our families. Okay. So the next question says, all right it's a bit of a long one so stick with me. There's new dialogue emerging about ABA being painful for children with neurological impairments. If the behaviors are coming from a sensory route how do you handle that in ABA? Or when sometimes the behaviors may start as sensory how do you distinguish between the sensory response and behavior management?

Elemy: Data. How do you distinguish them? Data. It all comes down to that. Again, none of these things like, it is the biggest thing about I can personally say from my experience with Syngap: it's the variables. The variables are endless and they are hard to identify and they're hard to narrow it down but if you take it one at a time and you narrow it down, you eventually, eventually get there. Sensory: how I manage that... it really just depends on, it's not a simple answer like it depends on what type, it depends on what the behavior looks like, what are things that we can attempt but some of the things that I would try to start mediating if I think there is a sensory issue it's just trying different things. So for example, if my kid is climbing up the rail of the stairs and he's consistently climbing on furniture and then he engages in a maladaptive behavior, then I would try something like giving some proprioceptive input like just looking at all of these different variables. As far as ABA being painful and all of that, it's such a long conversation and I have so much I could tell you about it. I would invite you to to just be open. ABA is a science and it's effective. Just like anything else there is good ABA and there's bad ABA. So learn to distinguish that. Learn to distinguish that because it's so very important. Us as clinicians we are taught and it's interesting that parents, most of the parents I have ever encountered in my career, don't know this: we are supposed to make the calls about a clinical fit. So sometimes an RBT will come into your house and you're like "I don't know if it's working..." and like, all of that. There are certain cases that is simply not a clinical fit. Like your child, just like you don't like some people, your child doesn't like some people either. It's normal human nature and parents don't know this. So it's very important that you, particularly Syngap parents, know that you have a huge complexity and that you need to identify what is best for your child and what is good and what is not. And with Syngap I feel like you really need the best of the best. Like you... sometimes we're like, how do we even manage or learn or do all of that? So just know that. I told you I'm not gonna sell you on ABA. I'm an ABA provider. I believe in my science. I know it's effective when done well.

Sydney: Great. So I actually have a follow-up question from that question and based on what you've just said but my child's been through several RBTs and two different ABAs within less than a year and when we got our second company that we were working with I didn't realize that we could have been doing so much better all along and so I'm wondering if you can maybe give some of us who are maybe towards the beginning of our journey or maybe we've been on it for a while with ABA and we're wondering, you know, is this as good as it gets? Do I have the best? What are some, like, red flags that we're not maybe working with the right people? Or that we should, you know, consider making a change to what we're, maybe who we're cooperating with for our kiddos? 

Elemy: And I actually would love to like make a list or something like that because that is something that is the the very first question that I literally 100% of the time of the parents that I have talked to from Syngap community is that question. Like, where do... how do we start understanding? So like, you guys don't know how... you don't know what you don't know. So I would love to actually make it a resource. But a few of the indicators that I can think about right now... first I would start with really understanding the treatment. So when you get services let's say you have your diagnosis whatever it is we come in and do an assessment. Right? When we do an assessment ABA we are required to establish our clinical recommendation. And that's what we're telling to your insurance "hey, for what I am seeing and what I'm assessing, this is the level of treatment that I need for this child to progress." That level of treatment is on that report of that assessment. Step number one: get a copy of that of that report. Get that report. You need to know what your child is working on and what the clinical recommendation is. That clinical recommendation tells the hours that are supposed to be fulfilled by your direct intervention intervention, your RBT, and on the clinical hours that is recommended for the BCBA to be there to do treatment protocol modifications and to do parent training. Make sure that your providers are fulfilling those hours. That's our clinical recommendation. When I give a clinical recommendation I stand by it because this is how we fight your insurance to fulfill the services. To fight that medical necessity and this is huge in our field right now where we clinicians are making these recommendations that we're not fulfilling. I'm telling you I need this amount of hours but I'm not getting all of those hours. So that's step number one. Make sure that you get those hours. Involvement: a lot of what happens right now is the BCBAs really are the most qualified to help the case, to develop programs, to guide the RBTs. There's a lot of young RBTs in the field. Like, you could literally get a brand new RBT straight from high school to come. Like I would never, ever in a million years would I allow that to come in with Jaxon. It's just it wouldn't happen. You know, so but not knowing the circumstances and whatever like all these RBTs just come in and they're a little clueless and then you don't realize. You get what you get and you're like "oh, this is ABA treatment" but it's not. So an indicator would be BCBA presence. Is your BCBA involved? Do you feel like you're more connected to your RBT than you are to your BCBA? And yes, a little bit because your RBT is there every day and your BCBA is not but that is I think on us BCBAs to make sure that I'm your go-to person. That you know that I am here that I got it. That I'm leading us to this place and I'm the head of the team. Whether your RBT is there all the time or not. Like, that's the trusting relationship that you want to develop with your BCBA. That you can literally lean on them. That would be a like an indicator. Progress. I mean, in general if you really think you're seeing... This is a huge one. Trust yourself. Trust yourself. I tell Monica this all the time. The expert on your child is you. No one else. You. No neurologist can tell you your child is not having seizures. You see it. You you know, obviously within reason, like you're not of course we have the parents who just want to do what they want to do, whatever. Assuming that you are keeping this perspective of openness and that I just always... I don't sugarcoat it. I'm gonna tell you as a parent like "hey, parent this is what it is. This is what you need to do." You can choose it, leave it, whatever but assuming that you have that open perspective, know that you are right. You're right. If you don't have a good feeling, if you feel like your child is not progressing, if you feel like you're not getting like fruitful information, you feel motivated you're like, oh this worked with my child like what Elemy told me dang, II got it! If you don't feel like that like, it's ups and downs but consistently with your treatment, you're right. Seek for something else. Does that make sense? That kind of answer? I think you're frozen. Sydney? Oh there you are okay great.

Sydney: Sorry yeah I know sorry connection may be just a little bad over here. But I think what you said was really empowering and it's something that you know, we learn I think quite quickly in the Syngap community is that we indeed are the expert on our own children because you come across so many different healthcare providers and sometimes even therapists who don't tend to see everything that you're seeing or maybe don't agree with you about the severity of things or something like that. And so I do think that that's kind of the golden rule as you've said about assessing how your treatment with ABA is going is, you know, if you feel confident that this is actually doing something positive for your kids and that we're addressing the correct things. You did also speak to the point of making sure that the clinical recommendation for hours for a child is actually met and somebody has asked how many hours of ABA a week does a child (and I'm going to say a Syngap child) need on average? I'm sure there's not a cookie cutter response but maybe if you can speak to that a little bit?

Elemy: Yeah I can't. I could not answer that question at all. It really depends on the child and I know that every Syngap kiddo has their own complexities and everything but I wouldn't, I really wouldn't even be comfortable giving you a straight answer. However I can tell you my guidelines and maybe that's something I can pull out for us as well. This is directly from the BACB board which is where we get our licenses from. There is two type of treatments which is the focused and the comprehensive. So when you go and do treatment you're working on all of these different domains right. Working on communication, socialization, adaptive skills, parent training, behavior. So a focus treatment is 10 to 20 hours a week, something like that for direct intervention and a focused treatment only focuses on one to two domains. So we would only work on behavior or/and communication or only work on behavior because of course ABA is practiced. Like, you have to be repetitive so that it just gets in the repertoire. A comprehensive treatment is one that you target all of the domains that have deficits. A comprehensive treatment is often 30 to 40 hours, 25 to 40 hours a week of direct intervention and that typically 40 hours would be the the very max. I don't foresee a kiddo needing like that's just a full-time job. Like, why would you work more than your full-time job? So knowing Syngap as a whole and as a complexity I would say I don't know that there is a Syngap kid that could do a focus program. So we would do a comprehensive. Like, anywhere probably about 20-25 hours is a fair bet but really just depends on the child but looking at those that's kind of how you can best base it on. If your child has communication issues, socialization, behavior, then you can assume we're going on the higher end than not.

Sydney: Okay, great. Monica do you maybe want to...? We'll throw this one to you first actually because we're being asked are there any good tips for helping to manage different expectations between the child with Syngap and a neurotypical sibling? And all of your children are, you know, this is a journey they've been on for a while. So I'd really love to hear your answer to that and then Elemy you're definitely welcome to chime in as well.

Monica: I just have to say that Aaron and I have raised two amazing young adult children. 19 and 22. Our parenting skills had to completely change when Jaxon came along and we didn't realize that. We thought, you know, we didn't realize what journey Jaxon was on until later as he wasn't quite meeting his milestones. Anyways, we had to completely change our approach to teaching and it wasn't until we really got heavily involved with ABA therapy that we realized we cannot parent, teach, Jaxon as we did our our older daughters. So I have relied heavily on ABA practices and we live, eat, and breathe that language and I firmly believe in it. And just speaking a little bit back to the amount of hours, there comes a point when your child, Jaxon is 15, there comes a point when your child can only take on so many OT, speech, PT hours, feeding therapy hours, whatever it may be. At one point I threw my hands up and said it's got to be ABA therapy. We've got to take a break. Our child is human. He's fatigued. They can only take on so much. As the caregiver or parent as well. So and it may come down to a point where you know, if you have an amazing ABA team like we do, you will incorporate those deficits that an OT or an SLP, those social skills that your child might need. If they have, if you have an amazing group like we do, they will cover it. They will teach you. They will teach your child. So just speaking on both points on that.

Sydney: Definitely. Before you had put so much time and effort towards ABA, I wonder like, what were the techniques or I guess the expectations for your older kids as far as what was gonna be normal for them versus what was gonna be normal for Jaxon and family life? Especially when they were a little bit younger and may not have had all the understanding that they do now as adults?

Monica: I have to say that both Aaron and I tried to do a decent job. We made an effort to really carry the weight of Jaxon's challenges on our shoulders and not our daughters' shoulders. And I don't know if that's good or bad but that was our approach. Sure, they're exposed to everything 24/7 when they're in the home but we made sure to keep them involved with sports, church, things like that, their extracurricular activity so that they would not feel that resentment towards their younger brother because he is the center of our focus in our home. And I really have to say it wasn't until they got older even closer to when we hit this pandemic that they truly embraced all that went into caring for Jaxon. Just because we had really desensitized them to it and I don't know if that's good or bad but that was our approach. And you know they love him dearly. They're his number one advocate, speaker of the voice he does not have. But that was our approach. Again, they have to, they had to learn the language of ABA therapy. You know, that's just our way of living and they know that they cannot deviate from that or you know, our... everything that we work so hard to do will be undone. So... so yeah.

Sydney: Thanks. Elemy, did you want to add anything to that?

Elemy: Yeah I actually would like to. This is me speaking as a behavior analyst just so that I can better answer the question because I feel like I even know from Monica's perspective what could be set... what expectations. Like, expectations for the child. Like, how you're treating one your neurotypical child different than your Syngap child or the expectations that your neurotypical child is having for their life. Like, what exactly are we wanting to know about?

Sydney: Yeah so the the question that we're coming back to is managing different expectations between the child with Syngap and a neurotypical sibling.

Elemy: So you having your expectations of your child is that...? 

Sydney: Sorry my printer's going crazy in the background. But I think that they mean, and you're welcome to correct me if I'm wrong here question asker, but I think that they mean your neurotypical child seeing that the expectations for them versus their sibling with Syngap is different. Yeah.

Elemy: Yeah, this is this is why I kind of like giggled earlier because... and it depends on where that question is coming from. Like, what's your current circumstance? But I can speak for our experience. I'll tell you an example. We were working on Jaxon clearing his plate when he ate. Right? He's eating, whatever, it's only appropriate that you pick up your plate and put it in the sink. And Monica'd be the first one like "hey, you forgot your plate" and then Jaxon's sisters would come back from the gym, make their breakfast and leave their plates. And I'd be like "Monica, what kind of nonsense is this? That you require this from your Syngap kiddo but you don't require this from your other children?" I'm like "Why? Why are you not making like your expectations... like, how does it make sense? Just because it's appropriate that you pick up your plate? Well, teenagers don't pick up their plates. So why are you making him pick up his plate?" You know? So as far as the child and I think that in our experience Jaxon is the youngest, so really managing those expectations is like, you have to find the the balance. Like, your neurotypical child is going to inevitably at some point come about "well, why is he to doing...?" Especially young ones. Particularly young ones are harder and I actually have worked with two Syngap families and they're younger so those expectations were harder but what II would say for parents is like, really mediating. Just remember that you are in control. Don't ever forget that the world is not happening to you. You're happening to their world. So you are in charge and be hyper aware of those expectations. They need to be realistic but keep them consistent. Like, within kind of like what I talked about earlier. Know what's achievable for your child but also don't handicap them. Like, you don't have to change your expectations just because they have Syngap. Make them realistic but make them high. If everyone in your household picks up their plate then and he can pick up his plate, then everybody needs to pick up their plate. And that way it's kind of a way to... a more realistic way to manage those expectations for when you're explaining this to your child because when you have an actual reason "hey, why do you... I don't know, push him in the wheelchair as opposed to be having to walk?" Well, actually he can't walk. Whatever it is. He has a blister. You have a reason as opposed that to you defaulting to "well, he has Syngap, I have to help him." You know? Like, that's the differentiation I would make. Like, have an explanation. A logical explanation (and reasonable) why you're not holding the same expectations and then don't do it for anything else. Hold the same expectations for your children.

Sydney: Awesome. All right. So I think we'll close with this last question and it's from me about helping us to understand how we can make sure that our RBTs and BCBAs are able to identify like the physical disease components which can be factors in behavior. So for instance: like, you know when we as parents know about like, our child's constipation or their seizures, we know all of their meds, their likes and their dislikes, things that, things that are caused by Syngap, how do we communicate these kind of health-related things that might be factors to our to our care team? And how much should we expect that they know about these elements of Syngap when they first come into our homes?

Elemy: Make them read. Like, that's... really... it's just, it's really tough to say that you know, there is a specific strategy. Like, I feel if I go to a parent and they tell me I'll be the first one to be like, "let me look it up" but that's half of the challenge with... I don't think ABA like any practitioner right like, I've even experienced it in trying to collaborate for Jaxon's treatment, that everyone, every practitioner believes in what they believe in and they're like "you're wrong and my science is right" and all of that. So it's kind of like the same. They're like well, I'm a BCBA and I do behavior and whatever. So I would... this kind of like goes into the... what I talked about... require your providers to know Syngap. Because it's hard as it is that we don't know but we don't know that it's available. It is much harder when you don't understand that. Like, if you... I cannot imagine not understanding the implications, how Syngap works, everything like that. So what I what I would recommend is just approach it in a very kind like, humble in a way, place. Just be like "listen, I really need your help and I want this to be successful. It would be so extremely important for me for you to read this", whatever like for you to really understand like what my child needs. And what's going to help you parents the most when you have our services is collaboration. So show us that you don't want me to just come fix you, right? Because I can't. I need you to participate. So if you show me that okay, I really want to change. Like, I'm not telling you BCBA that you're wrong just to tell you that you're wrong. I'm really just telling you: hear me out. Like, please hear me out. Read this and then if for whatever reason you're wrong. Like, in the sense that okay, well it wasn't the constipation. It was clearly him avoiding the task. Okay, then we can come to a common conclusion and then that's where the collaboration happens. But really just tell them "I really need your help. It would mean really a lot to me if you understand this. We've gotten feedback from providers who have been successful" and then I would put just I think our articles are hard to read as they are, but maybe just a few things that are important for a provider to start even considering. Like, what are the main things that we should know to even start looking at it. And require it. Next time your BCBA comes around be like "what did you think about that paper? Tell me your thoughts." Because you know, we're practitioners and we're taught to manage parents too. So I could be like "of course, yeah, sure" and then just be like "whatever". Like, really require it. That's what I mean by like, it has to be you. It has to be you. The one who establishes those standards for everybody. It has to be you. The one who is like, "come on, people". You know, like really hold us accountable. Really do. And you have the right. Don't feel bad. Don't feel bad. As long of course you're nice, kind, and whatever. That's our job. It's our job. Look at it like that.

Monica: Sydney if I could also share? Sydney on this I think it's super important that we're very honest with our team, as far as everything from their medications to their sleep to their BMs. Everything. The minute they walk in our door we go through a checklist. We talk about just because we know of different... everything... variables... just there's so many variables in Jaxon's treatment and everything from sleep to what he's eating, how many drinks he's had. It is so important for them to take that into consideration. If he's been awake at three o'clock in the morning they know not to go hard on him that day or to be more patient and whatnot. And I know our lives can be very shocking, whatever you wanna call it. We can have some rough roads and oftentimes people don't want to share what's happening but those are the people that you want to share with the most because they're there to help you and they can only give you suggestions, techniques, whatever on what you provide them with and how your family is doing and standing. So I really think that honesty is best. Let them know the ins and outs and yeah, that's my one suggestion as far as a comprehensive approach would you have it.

Sydney: Great. Yeah and I think too like, Elemy, the sense that I really get from you is that more information is better and I think sometimes us as Syngap parents because everything is so incredibly complex all of the time we tend to like weed out details and give what we think is most important but I think with really great ABA providers they probably actually want to hear everything that you could possibly tell them.

Elemy: Oh my gosh Sydney. For the longest time Monica would say oh Jaxon sleeps great. Jaxon sleeps great. Why would I know he didn't, right? And then one day recently she's like "well, yeah he was awake." I'm like "what do you mean? You've always saw me he sleeps great." Yeah, well in comparison to everybody else he wakes up two, three times a night. That's not a big deal. I'm like: "oh my gosh! I need to know this!" I mean that's not great sleep. It's interrupted sleep. Three times a night! It's so very important you tell us everything. We need to know because the slightest detail matters. It matters.

Sydney: Yeah. Great. Well, with that Elemy I just want to say thank you so much for all of the really good information that you've given us and Monica I really appreciated that you were here too because I think the team between a parent and a provider, you guys are obviously a very successful and well bonded team and that's so great and so encouraging for the rest of us to see what is actually possible. We just feel like you've given us so much hope for our children and just information about how to find really great providers like yourself that are out there. So with that we'll go ahead and end the webinar. Thanks again.

Elemy: Thank you.

Monica: Thanks.

You may also like

Manejo de expectativas al recibir un diagnóstico de Syngap1

Gaby Gerez, Psicóloga

Investigating the functional single cell biology of SYNGAP1 pathways

Turku Bioscience, Finland

¿Que es Simons Searchlight?

Catherine Kentros, LGC, MMSc y Misia Kowanda, PhD y MSGC

Simons Searchlight