54 – ABA Consult with Elemy Yeme

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Contact Elemy

Elemy Yeme, MEd, BCBA
Founder, EY Behavioral Services

Email: info@eybehavioralservices.com

Website: www.eybehavioralservices.com

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0:05when i messaged Elemy this morning i mentioned  to her that there were a few things that i wanted  

0:12to try to get out of this like you know kind of  impromptu shorter chat between us and the first  

0:19one was just to ask Elemy to share some of her  experiences working with syngapians especially  

0:25when it comes to the fact that they have a lot  of medical comorbidities and that really impacts  

0:32their behavior and i know that some of the clients  that she’s worked with it seemed like my kiddos  

0:38on a similar kind of medical trajectory so yeah  Elemy like i would really love if you could just  

0:45share some of like the big takeaways that you’ve  had with that in your clients i will just also  

0:53disclaimer i will not say my client’s name either  however i have full permission and everything from  

1:00the parents to share part of the reason why  we’re here is because they want to help their   community as well so it will be very obvious  for a lot of people who end up watching this  

1:10recording so just so everyone knows i have full  permission from the parents to share all of these  

1:17yes i agree with Sydney that in that regard  we do have a lot of similarities on medical  

1:23comorbidities and the complexity that comes with  that is really really really important in how  

1:30we approach our treatment one of the biggest  things that i have found is that i have had to  

1:37really customize their treatment just to an  unbelievable amount like we know we have to  

1:46do individualization of treatment but with  this kiddos i have to take into consideration  

1:54absolutely everything i know i asked you  Sydney if we are taking data for you guys on  

2:01how is sleep constipation how is the mood  today literally from we take data from the  

2:08moment what time exactly did we go to sleep  what time do we wake up how many times do we  

2:14wake up in the night have we how many  ounces of liquid we’ve taken in how  

2:21many times we’ve gone to the bathroom what  does the consistency look like all of that  

2:27and we take on it daily so that by the time our  RBT or myself which i do a lot of the direct  

2:35within part because i think that the complexity  requires a higher level of expertise in order for  

2:43you to make in the moment assessments that require  you to change your intervention but in the morning  

2:49what we do is just take that data and we adjust  our treatment based on that data i have kind  

2:56of like different behavior plans based on those  setting events alone and we actually take it so  

3:03into consideration that we have written protocols  for every different variation of a setting event  

3:10like situation medications the parent of my  kiddo literally calls me a pharmacist because  

3:21i know everything about those medications i  know what the half-life is what are the counter  

3:28interactions with it side effects what could  possibly be going on i’ve looked at single case  

3:35study scenarios of like the point zero zero zero  one percent probability of them getting this one  

3:42particular side effect because all of that really  really really affects their behavior they’re so  

3:49sensitive with their body a lot of what  we’re dealing with behavior wise is automatic  

3:55that can come across like denied access  attention access whatever all of that  

4:02but really with them i feel like we have not only  four functions we have like 17 of them and they  

4:10change on the second so you have to change your  intervention based on what you’re seeing that’s  

4:16one and two they happen simultaneously so what  greg kelly would call a synthesized contingency  

4:23it’s not only one thing it’s multiple at once so  it is very important that we have whatever staff  

4:30is working with them have the ability and are  trained on being able to identify those functions  

4:36right away very very important the complexity is  just mind-blowing it it it all works out you have  

4:45to take in consideration absolutely everything  ideally and i’m sure from what it sounds like you  

4:52guys are very collaborative but i consistently  have meetings with my clients neurologists with  

4:58a psychiatrist with his OT, speech school we are  all in constant like their emails back and forth  

5:04going on because of that because it plays a  significant role medication changes i know you  

5:10guys just recently went through a few i’m sure  it’s playing the majority of the role on all of  

5:17the things that you guys are seeing he’s basically  we’re not the social emotional ability for them to  

5:25regulate their body is not there and cognitively  sometimes particularly for a little one like him  

5:33they’re not there to understand how they need  to regulate and what they need to regulate  

5:38and so with that we’re left with an automatic  basically behavior because we think that he’s  

5:44tantruming because he doesn’t have access to  the elevator but really what is happening is  

5:50that his body’s inability to regulate you have  a protein that is like firing away his brain he  

5:57has laser focus on whatever it is and what it is  is his body inability to reach homeostasis and we  

6:05can help with that there is no way that behavioral  treatment like i’ve tried everything under the sun  

6:11deep breaths like the typical what we would teach  right the replacement behavior for that would be  

6:17them learning the ability to regulate but this is  biological like this is something that they’re not  

6:23able to do because of that excitatory protein  so we really have to find really creative ways  

6:30to turn around proactiveness is huge huge huge  if you can avoid all reactive strategies that’s  

6:40probably our best bet is it possible no but we can  absolutely try and that has been probably the the  

6:49greatest results i’ve gotten when i’ve gotten very  systematic on my protocol i’m very to the t on  

6:57my proactive strategies and again the ability to  change back and forth between one and or another  

7:03is very very very important i cannot emphasize  probably it’s one of the if there’s anything in  

7:09this whole thing that we can get out of is taking  into consideration those medical complexities uh  

7:15getting really fluent with them us as providers i  think that’s very very good i have a kind of like  

7:23a bundle of SYNGAP101 articles and stuff that i  found very helpful to help me understand what i’m  

7:31working with i can share that as well but really  just getting really fluent with that and and we as  

7:39behavior analysts know that setting events do  take a role in my experience what i have not  

7:47seen in our practice is that we actually take  that into consideration in the moment for a  

7:52treatment right we have one behavior plan that  we follow and that’s that and so when things  

7:59change which they do rapidly in syngap we a  lot of the ineffectiveness i think come from  

8:08that inability to change your protocol when we  need to so really really really taking those  

8:14setting events into consideration and applying  them in the product in the practical setting  

8:20is what has worked for me and how i’ve approached  my entire treatment i of course stand by the  

8:27principles do everything the same but really i  don’t i just really try the different ways and  

8:38i follow a lot of greg canley’s uh work i don’t  know if you guys are familiar with them but he’s  

8:44helped me and his readings and his trainings and  all of that a lot because it is uh it is really an  

8:50innovative way of doing ABA as opposed to the  traditional like in the 70s cooper like we are  

8:58really moving towards a more progressive  ABA and that is what i have been trying to  

9:06implement on what has worked for me and  that’s as far as complexities if that  

9:11helps a little if you have any questions  on that Sydney anything you’d like to add  

9:18i was thinking maybe you could speak a little  bit specifically about seizures and constipation  

9:26definitely the med changes are huge for us  and you’ve touched on that which is great   but those are in its two big ones i think  and i i’m just curious like what do you see  

9:34in your clients that might be applicable  to us as well well i’ll tell you what i  

9:39see in my well seizures forget it like when  they’re first of all yeah great points seizures  

9:50getting fluent on catching seizures with a naked  eye when i don’t know what type of seizures he has  

9:58but if he all of them yeah all of them if there  are apps and seizures by myclonia or any of those  

10:07i would highly recommend and i can also share  some of those um that we put our staff through  

10:15um identifying those because they are in the split  literally a blink of an eye you can look away to  

10:22your iPad and it happened and also a lot which i’m  probably sure that is the same for for your client  

10:36a lot of these are not classified as seizures  they’re classified as epileptic form discharges  

10:42that i find okay because that’s what the medical  providers tell us but for us when your brain is  

10:52firing up normally as it relates to our learning  or training or ability to have ultimately what we  

11:00have for what we want for a kid is to  have the availability for them to learn  

11:05right we want them on a stage in which they’re  able to learn i find it extremely disturbing  

11:13that epileptiform discharges as they’re  classified are supposed to not affect the  

11:20kid and they’re not classified as seizures and  there’s nothing we can do about it for us that  

11:26i that’s not true that’s not true because the  kid is is experiencing an electrical discharge  

11:33that inevitably shows that they’re not able to  learn i understand from the medical perspective  

11:40that we’re not able to medicate that because then  you’re balancing a sedation kid with like a lot of  

11:46medication like it is a balance and i understand  that but we as providers that are directly working  

11:52with the kid that has a significant impact and  when we notice that those seizures are happening  

12:00we either depending on the severity the frequency  how much we see well first behaviorally the first  

12:09thing we see is increased durability decreased  tolerability literally anything you deny access to  

12:16is a behavior anything you like it doesn’t go  the way they want it how they want it the way it  

12:24is at the moment that they want it behavior  whereas other times you see them be like  

12:30er so tolerable so patient so everything and  you’re like what in the world is going on  

12:38it is very likely not like the the kid you know  not the person not his mood not his anything  

12:46i just think have you ever have you guys ever  been like so busy you have a report to ride  

12:53you have a no you have like all these parents  talking to you your brain literally feels fried  

12:59and you just get home and you’re like oh my  god i feel like that’s literally how they feel  

13:06all the time 24/7 365 days a week and even  the times this is an important part too  

13:13even which is also a little hard for  parents to remind themselves of that  

13:20even good times excited times happy times too much  of that is is also not beneficial particularly for

13:33i’m singapore you guys or maybe not have  talked about what syngap is but synga base   basically the way i picture in my head is just  literally constant firing in the brain because  

13:44the protein can stop that it doesn’t have enough  of it to stop that exit ability in the brain so  

13:51even excited times get really too excited and then  emotionally if you look at what that looks like in  

14:01physiologically in the brain your heart your  heart rate excited and anger are the same it’s  

14:07rapid heartbeat is increased neurological firing  you feel just like amped whether you’re excited  

14:17or angry so a lot of the times excitability  turns into anger and it turns into a behavior  

14:24you have to watch very very very carefully when  your kid what is his threshold where where does it  

14:30turn into something else so it’s just really about  creating an environment that protects their brain  

14:38that protects their sensory input that’s as far as  t-shirts when there is seizures we automatically  

14:45know what we do we decrease our demands we  follow we go into like a building report  

14:53state and as much as we can medically we try to  provide some stability whether it is a supplement  

15:04that will like help them calm down or something  like that or we start modifying the environment  

15:10we close the shades we remove any patterns because  all patterns like like what’s a pattern like uh  

15:22any graphic like gridded pixels anything anything  like the sweaters that we wear we have to wear all  

15:32fl flat colors like just black white blue because  any sweater any pattern could trigger in that  

15:39state any seizures and once they’re triggered  they cluster so it’s it may take time to trigger  

15:47it but once they’re triggered they just continue  to happen so we start doing that what we have done  

15:52too is we’ve learned that a lot of there’s a lot  of different types it can be sound it can be light  

16:00it can be a lot but the majority of the input that  triggers seizures is actually visual whether it is  

16:10sound and visual or just the lights or whatever it  is the majority of the input that goes through our  

16:17brain is through our visual field so what we have  done is we have trained our kiddos to wear an eye  

16:24mask and so when we are seeing seizures what we do  is like okay it’s time to relax let’s put our eye  

16:32mask on and we started from with shaping literally  with like not even being able to touch the thing  

16:39and now we just wear it for like at least 30  seconds and at least that interrupts the pattern  

16:45so we do things like that like how can we  we can’t stop and we can medicate them more   and unfortunately because it’s all internal  a lot of negative negative pairing happens  

16:56and we end up suffering the most in our  relationships with them but when you build  

17:02a trusting relationship with them that at least  allow you in that moment to help them and they’ll  

17:09they come out interestingly enough and understand  like oh i i make the connection eventually that

17:20they eventually make the connection that that  that’s what is happening and and they let you  

17:25help them in that way a lot a lot of negative  repairing you have to be really careful with your  

17:32affect because it’s all in the brain so literally  a seizure can happen and he can straight be  

17:38looking at you and you’re the cause of that  seizure and if that happens a behavior will come  

17:44out of nowhere and you’re like what this is a lot  i don’t know if you’ve heard or sydney has told  

17:50you about the syngap snap or behaviors coming out  of nowhere we don’t know a lot of the times they  

17:59are very unexpected but as a good behavior analyst  99 of the time they’re not we just have to dig  

18:06deeper what happened what is it like yeah it may  be something that we have no control over it’s not  

18:13the typical like it’s for access it’s for this  it’s for that that’s not what i’m talking about  

18:18what i’m talking about is the behaviors do not  happen for no reason no matter what there may be  

18:24an internal reason there may be an uh reason  that we don’t know about we have to find it  

18:29and let’s try our hardest to find it because when  we’re able to find those like for example i know  

18:35that sometimes seizures are triggered by my  client’s dog barking because she’s so loud so she  

18:43reaches uh like a decibel level that triggers that  in his brain and now we know we have to keep that  

18:49dog shut you know so things like that constipation  constipation is probably other than sleep  

19:00one of the most most most important and  worst sources of behaviors for uh in my  

19:08experience for my singapians because what a  terrible time to be constipated all the time  

19:15like ages it makes sense even if tmi i got  constipated one day and i’m like i’m out  

19:21what is this you know so um it’s a lot  of pain it’s not only the constipation  

19:28i’ve learned too it’s the straining it’s negative  pairing from previous constipation experiences i’m  

19:36having to push to get it out that’s very painful  and pain as we know gets really really really  

19:43great in our brain so sometimes they don’t even  want to go to the bathroom they want to avoid   it all at all costs for the longest time  prior to me starting to work with my kiddo  

19:54he we would tell him to go to the bathroom he  first of all he was in in pull-ups um he’s no  

20:00longer which is great and he’s telling us  when he needs to go but a lot of the um  

20:07of the barrier with him being able to go to the  bathroom was the fact that nobody was paying  

20:13attention to the fact that it hurt to go to the  bathroom so he didn’t want to he didn’t want to   push so he will have accidents when whenever he  just couldn’t contain it so prior to that we would  

20:25literally have two hour drops when told to go  to the bathroom two hours he would just like he  

20:33would rather lay on the hard wood floor and do  absolutely nothing all reinforcement taken away  

20:41then go to the bathroom that’s a pretty high  aversion to me you know like what is happening  

20:47for you to to find that more reinforcing than  literally anything else under the sun that we  

20:52can provide you with chips fun reinforcement we’ll  take you to seaworld we’ll take you anywhere just  

20:58go to the bathroom nope flat no so that’s very  very important that is also um something that  

21:05i had to collaborate on with the mom on with um  medical because a lot of the seizure medication  

21:15cause constipation and not only the constipation  is just they slow the system down the entire  

21:22system so if you think oxygen intake that breaks  down your enzymes that goes down all of that stuff  

21:28plays a role so it just slows down your cells  your systems which just what requires processing  

21:37time we need to implement methods in our inner  behavior treatment to allow processing time for  

21:44all of those things and account for them uh so i  don’t know where you’re at with that um sydney but  

21:53definitely trying different um and i know you’re  you’re on it already but we have it literally i  

22:01did not let my mom stop her trial on error and  it took us solid two years until we were able  

22:09to find a combo that allowed him to poop daily  ultimately we need to poop daily otherwise those  

22:20constipation issues are not going to go away  um his bowels get strained it doesn’t look  

22:28pretty for them it’s painful and ultimately  you have behaviors that’s the bottom line  

22:33if you don’t get rid of the constipation you’re  gonna have behaviors so i hundred percent  

22:40recommend that you guys go through that process  and in the process as being in the behavior um  

22:47part just support with that if if he’s constipated  we gotta change or treatment we have to put in the  

22:53supports we have to allow processing time we  have to decrease our demand we have to go into   report building like it has to be a constant  change based on those medical um needs you have  

23:07really accurately described my life so i’m so glad  that we’re doing this um i wanted to say too like  

23:15because um melissa and erica haven’t spent time  with um emmett yet what lma is saying about  

23:22um the fact that you like you guys will just  even on the first day i’m sure see behaviors that  

23:29you’re just like why because i think that all  the time is like there’s still so much stuff   that i don’t understand why it causes behaviors  but there are definitely patterns of things going  

23:41on in his environment or whatever that i know will  lead to behavior even if i don’t know exactly why  

23:47those things would cause a behavior i know that  they will lead to it um and i think that’s part   of why aba has been so helpful to us is because  you have to kind of get out of your own mindset  

23:56of trying to understand why something’s happening  even though that is nice when you do discover why  

24:01and maybe take a step back and at least try to  identify the patterns or the scenarios that you  

24:07know are going to lead to behaviors  even if you don’t understand exactly   you know what is going on in his brain that  would make that such a a tricky situation um  

24:15um i wanted to ask you um so we do chart a few  things every day um that i have specifically  

24:24that his abat looks at so i think it’s like  constipation if there’s any med changes how  

24:30did he sleep what was his mood like i think  that’s and how are his seizures um on a very  

24:35kind of like general level i answer all of  those questions before each session for her  

24:40but um i take a lot more detailed notes on a  separate page that i don’t actually give to aba  

24:48that is for his ketogenic team so it’s like what’s  the ph of his urine you know how many times did he  

24:54stool how many seizures would you estimate of each  of the types how did he eat like it’s it’s a lot  

25:00more categories and it’s a little more in-depth  i’m wondering if that’s more like the kind of  

25:06charting that you’re getting from your clients  that’s just really specific and how often do you   do that yes i definitely we have four or five  pages of daily data that i just print um bring  

25:20to the family and the family fills it out daily  and we come in and we read it and based on that  

25:28or orchido is not without like ketogenic team  um so i created all of those sheets for them  

25:37and that i literally use them for my own for ABA  purpose that’s it which is it goes to show kind of  

25:45like crazy that we have no medical purpose of the  data it’s all behavioral purpose and that’s also  

25:51going back to what you were saying Sydney like  not finding necessarily the why but the patterns  

25:59this kind of data and i would recommend for the  ABA team allows you to see those patterns because  

26:06it is it it is easy to get caught up in  like okay why what is the function which we  

26:13need to know um regardless but also just  knowing the pattern or knowing even like  

26:21i’ve gotten to know my kid so well that i am  better able to identify what could be the why  

26:31now obviously after six years than the parent  is now because i know the patterns i know well  

26:39this happened and then this happened like uh for  example a weekend where like i’m saying like even  

26:46excited states are a problem whatever a weekend  where okay everyone is home sisters are home dad  

26:52is home we’re going to sea world we’re going to  the carousel we’re going to all these fun places   Monday comes bloody murder and everyone’s  like but he had such a great week and i’m like  

27:03yeah well he had such a great weekend with  all these people all of his everything that   happened his brain is fried there was no time  to rest all of this and yeah it comes out of  

27:14nowhere when you tell him like stand up and then  he’s just out of his mind like there there is  

27:22uh we may not know exactly what happened  at the moment that i told him to stand up  

27:27and we may think it’s a demand but it’s not that  it’s just literally the three days that happened  

27:33prior to us or out of nowhere because lack  of sleep is very common for syngap and singha  

27:41parents tend to normalize that all come and which  is understandable but you have to also pull it  

27:49out of them so that you know what you’re working  with i’ll come and um you know he’s very irritable  

27:56like just moody i’m like what’s going on you know  how is sleep oh he’s left gray everything’s great  

28:02okay well i keep digging and giving three hours  later it’s like oh yeah well he’s he woke up like  

28:07five times last night i’m like you said that was  great sleep yeah well that’s great sleep for us  

28:14like that’s still not great sleep for anyone  he woke up five times that’s not good sleep  

28:20that’s something to consider and if you woke  up two times or he woke up six times there’s  

28:26a difference and that you know matters to us so  definitely i have a big old sheet i also have it  

28:34done and formulated so i can send it to you if you  would like and that’s how i found patterns too of  

28:41okay when you go here when there’s a change in  schedule in this regard or when there is this or  

28:47when there is a it seems like that’s a pattern we  have to watch and whenever that situation occurs  

28:54then what we do is we go proactive and see how  we can help them um overcome those situations  

29:02all of this is really good and i think like i have  a couple of ideas of things i want to try with him   with you guys too that we can chat about just  from this um i mean one of the other things that  

29:12i had mentioned to you was um kind of the issue  of motivation for emmett i mean it’s definitely  

29:20impacted by his seizures and certainly it took  a huge hit when he was going through a medicine  

29:26change where he wasn’t feeling well it was like  anything that he normally liked he was like no  

29:31thank you all i want is my iPad or the tv and that  was like the only thing he would reliably like do  

29:37anything for or show interest in for a while  um but even before that happened i did notice  

29:44that you know as time goes by and he’s getting  a little bit older you know he’s kind of moving  

29:50away from being excited by some of those more like  baby kind of things like um board books or bubbles  

29:59or you know musical instruments um stuff that’s  you know for younger kids but truth be told it’s  

30:06more appropriate for him as far as what his gross  and fine motor skills look like and yet he’s still  

30:12kind of you know aging away from them or you know  not not being as excited by them and so i feel  

30:20like we’re in a little bit of a tricky place as  far as like finding stuff that actually motivates   him and that is reinforcing for him and i don’t  know if you have any maybe pointers for us on that  

30:32yeah for sure so i know he’s he’s a little one  so that is definitely a little bit different  

30:41because i imagine that some of your goals are are  probably going to be fine motor gross motor and  

30:48all encompassing for example for me um mine have  been older like seven and up and even teenagers  

30:56so we have gotten to the point that we’re like  straight functional like okay what what are we  

31:02working on that we’re no longer working on those  little um really developmental milestones that i  

31:10definitely wouldn’t recommend that you don’t like  i think big part of the problem that has been not  

31:17problem but that has been more challenging for  us to teach my kiddos is that so much of their  

31:23developmental milestones were missed and it wasn’t  that we couldn’t teach them it was they just were   not taught um by motivation they definitely i have  a hypothesis you guys may laugh okay but it’s okay  

31:39that maybe one day we’ll discover that sing up  just like the the actual condition makes them  

31:46look a lot like less functional than they are  because cognitively god some of the things that  

31:54they do i’m like how how do you understand remorse  kid how do you get like the guilt i’m like one day  

32:01we’re just gonna find that physiologically and  physically that’s what it makes you look like but  

32:06all this time you understood exactly what you were  doing so uh as in regards to him actually growing  

32:14i don’t my kids interests like literally  change yearly and granite i have a teenager  

32:21but and that’s on a typical level like they change  that quickly but it doesn’t surprise me that that  

32:27doesn’t interest him anymore like he’s actually  growing developmentally even if he’s not growing  

32:33as fast in all of the things that we think  that we consider developmentally appropriate  

32:39you know um so really i have not much of a  concrete answer unfortunately for you guys i just  

32:50don’t stop trying when i first started working  with my kiddo the first thing that i was told  

32:58was like nothing motivates him i’m like oh yeah  challenge accepted because there is something that  

33:04actually motivates them there there always  is and it’s not only ipad it’s not only tv  

33:11we have to look i seriously have i i’m the most  ridiculous person on the planet at all times  

33:19and my mom tells me now my mom the mom of my kid  tells me that it’s like anyone who like meets you  

33:26i seriously will probably get like i don’t know  how are you with her or why do you let her do  

33:33all of this because i’m absolutely out of my mind  like i will do a personal circus in his house if  

33:40i have to i’ve pulled like their sister’s barbies  i’ve pulled hats i’ve pulled um videos and i just  

33:50try and try and try and try and try and try and  try and try i’m constantly looking on a daily i  

33:56kid you not i’m like fun toys and one thing  that i i can’t tell you concretely is that  

34:03saying appians do like cause and effect like uh  toys or any kind of um activity like push and  

34:12pop like pop the pirate or things like that that  something happens and boom surprise something else  

34:18happens birthday parties anything exciting they’re  very happy kids so they’re not the type to like  

34:26sit with a puzzle maybe yours is but it doesn’t it  doesn’t seem like it yeah sit with a puzzle or the  

34:33typical puddings or the typical blow bubbles like  they don’t they’re super happy exciting outgoing  

34:41like yellow we go out on the streets and yell  at people and we’re like hi hi look at us we’re  

34:48so-and-so and blah blah anything fun and it put  your most uh like outgoing extroverted staff  

34:56with your sing-up kiddo because that’s  what they need they need action they need   stimulation they need just like if you think  his brain is going a thousand miles per hour  

35:06a puzzle is not going a thousand miles per  hour so you need something that can control  

35:12that and that’s typically like someone who’s  loud and obnoxious all the time like this

35:20um but yeah there is definitely ways to uh  find that motivation just keep keep keep trying  

35:27um and look for for innovative like more crazy  things and then if i put on tv or for right now  

35:37until you find the ladder or whatever um then use  that i literally got to the point when i first  

35:44started working with him and nothing worked for  him i will literally take his ipad and just be to  

35:52build instructional control and be touch your nose  okay here you go fine touch your nose here you go  

35:58like in that regard very dtt but that’s what  helped me break away from that and eventually  

36:07he was so motivated because i made it fun and i  started introducing like those pairings with my  

36:13own phone that he would give me his ipad and  then we slowly went away from that and i know  

36:20already that there is things that he does like  like elevators or like all of those other stuff  

36:26all of those that seem to be problematic there’s  a way and it’s not easy but turn them around to  

36:33your advantage he has those motivations use them  that’s what that’s the first thing i would suggest  

36:39and that’s the first thing i did and um i hope  we get to elevators that was something really  

36:44good for you sydney oh yeah well i actually i  wanted to ask you quickly about the ipad issue  

36:50because i’m also as a parent still trying  to shape my mind around what an ipad means  

36:57in a family with a child with such a significant  disability because you know obviously we know that  

37:04tons of screen time can take away from actually  time that can be used to develop other skills  

37:11and if i’m being honest the ipad for us has also  become almost not quite but almost as problematic  

37:19as the elevators in the sense that when it’s  time to be done it’s ugly and it’s brutal um and  

37:26you know i’ve used it a lot of times the same  way i would use it for my neurotypical kids   which is like i need to work for another hour  here is the only way that i know how to occupy  

37:36you for that hour so that you’re safe and i can  do things and i’m starting to realize like maybe  

37:41that can’t be how we use it and we have to use it  more for um you know like ada related purposes and  

37:47instructional control but maybe you can help me to  understand that a little more because i definitely   if that’s going to be a good motivating thing  for him then that’s great but i feel a little  

37:56bit like it’s a slippery slope where it’s like  okay we’re using it to motivate but taking it away   is really hard and now we just get stuck in the  place where like he is only working for the ipad  

38:07and like you i hope that makes sense maybe  you can it absolutely makes sense um so  

38:15a couple of things on that first you’re the mom  i know that you’re awesome and you want to do  

38:21everything that you can and you want to don’t  make it your goal to be the therapist because  

38:27you can’t you have to be the mom so don’t think  that my mom uses the ipad the same way that you do  

38:35like i have i need an hour to make some phone  calls and whatever here’s your ipad kit and i  

38:41100 approve that i’m like do it like that you’re  the mom that’s that’s what you do when i go in  

38:49and i need to take data i’m not just gonna give  him the ipad that’s my job so don’t feel like you  

38:55have to do that or like don’t feel bad for doing  that and don’t feel like you um maybe need to  

39:02save it for aba or anything like that don’t change  that yet we’re not there you know like only when  

39:09your team has a down and they’re able and please  if you don’t think so let me know but only when  

39:16your team has it down and when they’re able  to transfer this skills and all of that to you  

39:23then that’s when we move on because then your dive  will your life will become more difficult and we   don’t want more difficulty to come to you or to  the kid so there is one two um i’m so glad i asked  

39:38that’s the information that you just gave me so  you melissa and erica will just have to remind me  

39:44yes they need a lot of reminders their parents  do need a lot of reminders that’s another thing  

39:50very and they’re um i think that because  of the difficulties that they face they’re  

39:58just very different from all the parents  at least in my experience that i’ve had to  

40:03um deal with because even the hardest  conversations they’ll take it they   want you to tell them so don’t be afraid to  tell them to be honest and to just be like  

40:13listen this is what i see and ultimately i always  leave it up to them but 99 of the time i swear  

40:20probably 100 of the time they’re like okay you’re  right we’re in let’s do it you know so that’s for  

40:26you guys too like know that you can be completely  open there they want the help more than anybody  

40:33so you can be honest on that so um back to  the ipad there is a few um things on that

40:45i agree i i i’m not for screen time i’m  not i’m not one to be like yeah well let’s  

40:52use ipad as a motivator i’m what i’m  saying is let’s use ipad as leverage  

40:58because the reason why you don’t  have anything else to give him   to do other than his ipad and even for example  if tv is an alternative i would recommend that  

41:09you guys use tv more than you use ipad because  ipad when they’re like this this causes seizures  

41:16and it’s more likely to be more uh detrimental  than uh longer distance on the tv so that’s one of  

41:24one thing concretely that i can tell you when  you can trade him the ipad for the tv do it  

41:30um but the other reason why we can get him to do  anything else is because those leisure skills are  

41:36in there so one thing to do is we need to work on  leisure skills and what are those well we have to  

41:42tap into his motivation what is he willing to do  on his own that doesn’t require the ipad i don’t  

41:49have many for my kiddo but i have some and i had  none and they don’t last a long time but they last  

41:55some time and that’s just a little bit of i’m  okay with that you know we’re making progress  

42:01from absolutely nothing literally i but i but i  but first of all he wouldn’t even watch a whole  

42:06video he would just scroll on the ipad and i’m  like no nobody like we gotta watch the video if  

42:13you’re gonna watch videos watch the video so  we first started working on that and it turns   out he liked the videos that he was watching he  just never watched them so he was just scrolling  

42:24so we started there uh out of a sudden he got  all this interest on music on like freaking adele  

42:33and bruno mars and then other interests like yo  gabba gabba on and yoga actually has great shows  

42:42um that have helped us uh teach other things like  coronavirus and germs and wearing your mask and  

42:50washing your hands all of that he never knew he  liked them so there’s that and then um from there  

42:58we’ve been able to pull other things like okay now  he has his own airpods we got him his own airpods  

43:03we connected to our phone and he listens to music  and he’ll do it for five ten minutes something  

43:09like that uh pictures loves loves loves pictures  what an idea to make him an album we just made  

43:18like a bunch printed a bunch of pictures that he  likes of all of the places that he likes going to   of the people that he loves whatever and  he’ll just sit there with three of his  

43:27big old binder albums and he’ll just like look  and calm me relax you know it’s a lot of like  

43:33tapping again into that motivation and what he is  willing to entertain himself with but the reason  

43:39why he’s going to the ipad is because he doesn’t  have anything else he doesn’t know what else to do  

43:44it’s kind of like you and i when you literally  have done everything you’ve worked out you’re  

43:50literally in a miracle day that you have done  everything that you need to do and you’re just   sitting there and you’re like ah anything else  to do what am i gonna do it’s the same thing  

44:00they don’t have that um so there is that we  have to uh probably tap into his leisure like  

44:06what are we working on for him to be able  to entertain himself and at the beginning   obviously he’s gonna need someone he’s it’s  gonna be to need to work done with someone  

44:15so that we can slowly fade out that support  um behavior in regards to taking the ipad away  

44:23that’s also something that you’ll  need support from the behavioral team   that obviously our goal is not to use again is  not to use the ipad to motivate him is not to  

44:33use the ipad to forever be it our goal is to use  it as leverage to move it away from it and teach  

44:41him the appropriate replacement skills for those  behaviors to go away that requires a level of like  

44:48really detailed behavior plan planning and  development and modifications and trial and error  

44:55that that’s where the behavior team would step  in and that’s what we did and that’s kind of like  

45:00along the lines too of how we did um the elevator  how we did the escalator how we did all of those  

45:08things that were like a source of severe uh severe  behavior but also a source of great motivation how  

45:16do we twist them around how do we flip it again  that’s that’s just planning from the behavior team  

45:22and i’m sure with all the behavior strategies  like they’ll walk you through but it’s not a   simple thing it’s it we have to work on it and it  takes some time and it takes some trial and error  

45:32does that make sense and answer your question  it totally makes sense so um how about since you  

45:40mentioned it in the last 10 minutes i want to hear  your brilliant elevator ideas um there’s no way we  

45:47can cover the complexities of image relationships  with elevators in 10 minutes but i’d like some key  

45:53points for sure um well it’s honestly really  it’s not that brilliant it’s just the same  

46:01what i wanted to tell you sydney personally  from the email that you sent me last is that  

46:09the mom of my kiddo told me the exact same  thing you told me the exact same thing  

46:16is just it will never get him away from it  and it’s just a problem and i’m worried about   this and it’s a behavior and all that the thing  about behavior and the way that we can help you  

46:27is that you need to allow us to help us the way  we know how to do it and this goes for both you’re  

46:34that i wanted to talk about your therapy room  too um we need to create positive experiences  

46:42along what we want the behavior to be extinguished  decreased or eliminated in order for us to be able  

46:49to help the behavior decrease we have no luck  no game in the game if we do not have a positive  

46:57relationship with a kid and a positive experience  with the kid if all he has is negative experiences  

47:03with the elevator what should you expect a  negative experience but if you create a positive  

47:09experience with the elevator this was like so  outrageous and i remember for um the um my kiddos  

47:18mom she was like you’re out of your mind i’m not  taking him to the escalator we’ll never get out   of there everyone will get tired of something  they like at some point i was like i promise you  

47:29i’ll stay with you eight hours i don’t care but  he will get tired and once he gets tired and he  

47:37engages in the appropriate behavior leaving the  elevator when you’re asking him to do your game  

47:44even if it takes you eight hours but personally  is the only way that i know how i’ve experienced  

47:49it and what i i’ve done is okay you won the  escalator i’m gonna give you all the escalator  

47:56that you want but there is only one requirement  obviously that instructions are followed and that  

48:03obviously the replacement behavior exists if you  remove the situation in which he has to engage in  

48:11the behavior because he doesn’t get access to it  then the behavior shouldn’t occur at all because  

48:17he’s getting access to it all he wants let him  push the buttons let him break the elevator  

48:24who cares at some that behavior will be  immediately eliminated which is what we want  

48:30we want to engage in the behavior without the  male adaptive one and so eventually he’ll just  

48:35be like okay cool or you have his ipad and if  his ipad is equally as motivating then be like  

48:41okay it won’t last eight hours i promise you but  hypothetically speaking it does you’re like okay  

48:47you’re ready you want your ipod okay let’s go  cool he sits in his stroller he goes away he   engaged in the in the right behavior that’s all  you need and then you do it constant enough where  

48:57he knows think about it like imagine you being  deprived of the one thing that you love all the  

49:02time what would you do hit and scream and cry and  throw yourself on the ground until you get access   to it so that is what’s happening they’re being  deprived to the one thing they love the most so  

49:13why deprive them instead of satiating them  giving them what they want and teaching them  

49:19the correct response let’s teach him that he  will come back the reason you don’t know and  

49:24this is something that i tell my parents all  the time you don’t know what’s going on instead   you don’t know if you remem he does remember  but hypothetically speaking in that moment  

49:34you don’t know if he remembers that he’ll come  back you don’t know if to him it’ll be gone  

49:39forever you don’t know if it means like it’s  like death of a loved one like you don’t know   what that means you know to him emotionally so  what we want to teach him is that it will come  

49:50back we will give you what you want we promise  you trust us we’ll give you what you want but  

49:56you have to follow the flow you have to follow  your instruction you have to follow all of that  

50:02so that is my non-so brilliant idea it’s just very  basic you just have to be willing to deal with it  

50:09and be willing to the day that you go to therapy  you have your your team you have your vcba there  

50:15and let’s do it guys let’s start this i mean i  kid you not there’s such quick learners it won’t  

50:22even take you like a week two weeks it won’t be  like a a crazy thing it’s quicker than you think  

50:28but it is because we’re doing it the opposite  way that it’s just not working for us same with  

50:34your therapy room i i know that you mentioned why  he’s not allowed to go in the house and sometimes  

50:41you’re working and all of that unfortunately the  only thing i have for you is you have to make that  

50:47therapy room a positive place the more the more  you restrict him the more he’s going to want to  

50:52get out especially if it’s not a positive place  so i would what i would do is keep the gate open  

51:01allow him access to all of those things and and  again out of all out of these two things and  

51:06everything else that comes in regards to that what  you guys want to do is create positive experiences  

51:13first so that you can actually teach him what you  want he’s not in a state and he in which he can  

51:20learn when he hates the place that he’s in he’s  constantly thinking about wanting to get out and  

51:26he’s not stimulated in a way that he can learn  he’s not getting anything out of those sessions  

51:31if he’s constantly in that place we want to first  want him to be happy want him to not be restricted  

51:38want him to come around and then maybe we put the  ipad in the room we put all of the good things in  

51:46the room and then we get him to come around you  know does that make sense yeah it does and melissa  

51:54i’m not sure if you know exactly what elemy’s  talking about because obviously you haven’t been   here but um we have like a room with more toys  than one child should have um you know that we’ve  

52:06really carved out a big space for emmett and um  he is not excited to be in there and anytime you  

52:14try to get him to go in there he is really upset  about it um and so i was just asking eleamie and  

52:21i’ve talked with his about about this as well like  how do we encourage him to enjoy time in there um  

52:27you know more than he is so that you know there’s  a safe place to put him when we need he can have  

52:32good sessions and everything but um obviously  he also needs access to other parts of the  

52:38house and things that are in the house as  well so that’s what she was chatting about   yeah i also if you have a lot of  toys though i would recommend taking  

52:46some of those away like putting them away  yeah we have actually been paring things down  

52:52um and i’ve also been thinking too that you know  maybe um he needs you know he needs some new  

53:00things but he also needs more cause and effect  kind of stuff as well or sensory things which  

53:05i think are the two things that he would enjoy  the most and get the most reward from um yeah

53:14yep so there is that cool all right so  um i don’t want to take too much more  

53:19of your time element i really appreciate  you sharing this stuff with me and i think   um for melissa and erica this is really  informative like such a great way to start  

53:28their working relationship with emmett because  yeah he is complicated um and everything is  

53:33really complex so i i do really appreciate  your time and i’m definitely like i’m sure  

53:39my team and i will talk together about some of  the ideas you’ve given us and i’ll give you some   feedback and let you know like what worked and how  quickly it worked and all that kind of stuff too  

53:47yes perfect and if you have any other questions  if you want to share my email with your team  

53:53i’m happy to answer any other questions you guys  set a roadblock please reach out i’m happy to help  

53:59i want these families to achieve success and all  that so i’m happy to help in any other way i can  

54:07just let me know that’s awesome thanks melissa  to you too for making time to be here hey