Jump to content

Menu

Talk to me about in-clinic OT - UPDATE


Recommended Posts

I am erasing this later. Please do not quote.

 

Marco (4) is, for the first time, receiving in-clinic OT. Prior to this, he had always received in-home therapies. I'm not super thrilled at the moment, but perhaps my expectations are skewed.

 

Marco's dx is specifically autistic with Level 3 Support Needs, with an expressive-receptive language delay. In the areas of rigidity and sensory seeking, he is considered to need the most intensive of support, and these things are what qualifies him as "severe" on the spectrum. It was decided that his most pressing need right now, is to address the rigidity, which is what he is in OT for. I thought they were also addressing the sensory seeking and sensory input needs, but I don't think they are yet.

 

I just wanted to give a bit of background before asking my question, for those who haven't read my posts :)

 

Is it standard operating procedure for an OT to punish a child, who is in OT for issues related directly to rigidity, for refusing to do a task on his newly-introduced (as in, only introduced today) task/visual board? 

For that matter, is it standard operating procedure for OTs in a clinic setting to punish their clients at all? By punish I mean put them in a time out chair. 

 

I never leave the building, if my location matters, but I typically do not go into the therapy room (which is really just a large sensory space with a bunch of kids, their therapists, etc. 

 

 

 

 

 

 

 

 

 

 

 

Edited by AimeeM
Link to comment
Share on other sites

I think opinions will differ on this but I will say that a lot depends on you and what you are willing to accept. We don't have personal experience with OT yet, but no, this is not standard procedure with all OTs. From my research I have come to realize that a lot depends on what qualifications the OT has to bring to the table. Many have training in specific approaches beyond their OT training and will incorporate those. It is why I have chosen to look into one over another of the two recommendations for OTs that we have been given. So it all comes down to what you as a parent agree or don't agree with.

Link to comment
Share on other sites

I did express, after the incident, that I wasn't pleased and she apologized. My concern is that it happened. Marco seemed confused and was noticeably sobbing when he came out to me--and now doesn't want to go back. This is kid who will never again eat a piece of pizza if he has one experience out of the ordinary with a single slice of pizza; a kid who will hide from baths for months because one time his water had cooled off and now all baths are "bad" and "too cool." 

I didn't think I needed to clarify "don't punish" because it never been an issue with other therapists, but I know it was mentioned that if Marco has a bad experience with something (ESPECIALLY early on -- and he's only been there a few times), it will "always" be bad to him, and often anything even surrounding the incident. It all happened over a coloring sheet. To the OT I can understand that it happened because of a refusal to complete a task on his visual board, but to the very linear 4 year old, it happened because of a coloring sheet.

Edited by AimeeM
Link to comment
Share on other sites

My son spent years in OT and I have never heard/seen such a thing.

 

I would be looking for a new therapist.

 

Is there anything specific I should look for in an OT? This clinic is the most highly recommended. Initially we were supposed to have the head OT, but she didn't have any openings, so we went with her recommendation for another OT in the same office.

 

Marco cannot really receive the type of OT he needs in-home, which is why we finally decided to go with in-clinic. His first and only try with in-home OT was an epic fail, so I'll admit that I'm not sure what to look for. This OT has reputably worked with many autistic children, but every child is different -- and I guess every parent has different expectations? 

 

She did e-mail me to apologize again and to discuss Marco's goals. 

Link to comment
Share on other sites

AimeeM, Marco thinking that he got punished for a coloring page would not be inaccurate. Think about it! How much more successful would her approach have been if she slowly encouraged and built on the skill? Her time frames will not always correspond with what your boy is ready to accomplish. Perhaps she needs some training on flexibility! I'm sorry, I know she apologized, but if she is not prepared to put the child above her schedule, I would be questioning how useful and effective she will be.

Edited by Guest
Link to comment
Share on other sites

AimeeM, Marco thinking that he got punished for a coloring page would not be inaccurate. Think about it! How much more successful would her approach have been if she slowly encouraged and built on the skill? Her time frames will not always correspond with what your boy is ready to accomplish. Perhaps she needs some training on flexibility! I'm sorry, I know she apologized, but if she is not prepared to put the child above her schedule, I would be questioning how useful and effective she will be.

Oh, I totally understand why he would think this was about the coloring page. He can't tell me that, though, because--well--language delay. The same way I didn't know the cool bath had traumatized him until the next bath time came around and he went from screaming and running to stimming to running again, shrieking about how "baths are too cool."

 

What he is telling me, very directly, is that he "not go back." Emphatically. 

 

Apparently after sobbing in the time out chair for a while, he finally tried to submit so that he could earn time in the ball pit, but his "therapy time was up." 

 

This was also only his second day with the full ILS headset on, in addition to the brand-new visual schedule. I'm all for "first-then," but his other therapists seemed to be able to make progress without punishing him. It took some time, and it definitely took relationship-building on their end first, but they got there with him. 

Edited by AimeeM
Link to comment
Share on other sites

I think you need to look at what their approach is based on. If it is standard procedure to use aversives at that particular center and you are not opposed to it, perhaps you could ask what the aversives they use are, and you can tell them which aversives you disagree with.

Link to comment
Share on other sites

I'm all for "first-then," but his other therapists seemed to be able to make progress without punishing him. It took some time, and it definitely took relationship-building on their end first, but they got there with him.

Yes, exactly! Different approach can make a world of difference. That and a lot of patience.

Link to comment
Share on other sites

I think you need to look at what their approach is based on. If it is standard procedure to use aversives at that particular center and you are not opposed to it, perhaps you could ask what the aversives they use are, and you can tell them which aversives you disagree with.

I disagree with aversives that are not simply a natural consequence. I'm okay with "first-then" -- if you do not do this, we can't do that, but I'm not sure (the more that I think about it), that I agree with that in this setting. He has no concept of time (at all -- not in hours, or even in days), so when does finally do the "good thing," if his clinic time is up, and he doesn't get to do what he was promised, I can't imagine it working out well.

Link to comment
Share on other sites

AimeeM, I would question why they decided to work on flexibility before sensory integration when so much of autistic kids' inflexibility is based on sensory issues. I don't know how many service providers you have available but I would do some research. Yes, I am also opposed to aversives other than natural consequences. So that is definitely something you need to factor in if you look for another place.

Link to comment
Share on other sites

AimeeM, I would question why they decided to work on flexibility before sensory integration when so much of autistic kids' inflexibility is based on sensory issues. I don't know how many service providers you have available but I would do some research. Yes, I am also opposed to aversives other than natural consequences. So that is definitely something you need to factor in if you look for another place.

The inflexibility was affecting his eating, which had become so much of an issue he was losing weight. 

That is no longer the case, though. While his list of things he will eat is very limited, and he isn't flexible with those things, we now have most of the nutrient bases covered by something that he eats. (This was achieved prior to starting with the OT, but after his initial evaluation.)

I mean, eating is still an issue, but I'm more concerned about the sensory and rigidity. And, yes, this particular child's sensory needs are serious. He will spend hours running and throwing himself into, and bouncing himself off of, the same three pieces of furniture in the living room. He spends the majority of his day sensory seeking in some way, shape, or form.

 

We have options, blessedly.  

Edited by AimeeM
Link to comment
Share on other sites

You've brought up before your discomfort with ABA and I remember you mentioning you were pursuing OT for rigidity/flexibility. Ironically, in-home ABA, done gently, without aversives, actually would be really good for reducing rigidity. We also did art therapy for improving flexibility. Artists are very flexible people, so hanging with them for a while in a therapy setting can rub off! We REALLY enjoyed our art therapy, and I think you can't go wrong with it if you get someone experienced with autism.

 

What I'm a little confused by is that she's working on compliance when you're saying you want to work on rigidity. 

 

I also think it's a mistake to assume this OT was doing anything ABA. I don't really have a high opinion of therapists in general (yes, I'm nasty), and ones in a setting like that in particular are going to be novices, newbies, less experienced. Now you could have a crap experience with someone who has been doing it 30 years, sure! But get a novice, someone who has NO EXPERIENCE WITH ASD3 and pair that with goals she barely knows how to implement that aren't in her real area of training, and what are you getting?

 

Timeouts are typical things you'd do to NT kids. They are even controversial for that. They assume an ability to connect cause/effect. It showed she has no training in ABA, no training in Zones, no sense of ending the session on a good note. If she had ANY, ANY, ANY experience at all, she would have ended the session with something positive, absolutely! People who get autism know what you're saying, that a bad session pairs the bad experience and the therapist, killing the relationship. 

 

This therapist is not worth going back to. Since the practice sent you to her, they're not worth going back to. And since an OT isn't the right way to work on this (sorry), I would move on. Gentle ABA, with no aversives, with a focus on pairing and enjoying each other, would achieve the goal you're wanting with minimal trauma. 

 

OT training is minimal compared to the enormity of the task. Anything they're doing that is autism-specific is stuff they learned AFTER their certification by getting trained by another staff member or going to workshops. Think about that. You could go to workshops and have the same training. They didn't get it in grad school. There are OTs out there doing stuff at $$$$ who are patently unqualified and unskilled. I'll say the same about SLPs. I'm an equal opportunity dumper! I've met some really good ones, yes. The problem is, they are constantly called to work on things outside their expertise, and so they fudge it and fake it.

 

This chick had no clue, and what she did to your ds was dangerous and harmful. You can work on his rigidity yourself, just like the ABA people do. You play games together and bond and do great stuff, and they you *slowly* start to make teeny tiny demands. Not compliance, but little demands like oh I want to do this first or oh I want to color mine green not the color you demanded I use, etc. 

 

Workers who do that, who play and slowly, slowly add little demands and complexities, ironically, are WAY CHEAPER than OT!! Seriously, like my ABA worker, whom I pay to play Playmobil and air hockey and lightbrite and you name it with my ds, is only $15 an hour. OT around here is close to $100. 

 

A lot of these lessons are going to be learned slowly, over time, as his stress level decreases, as his comfort with his routine and the predictability of his routine increases, allowing him to be a bit more flexible. It's not like one hour a week for a semester and boom. It's like we worked on it 10-20 hours a week for a semester and saw some *progress*. 

 

I'm not trying to tell you what to do, because I know you're conflicted on the ABA. I STRONGLY agree with you that the OT is unqualified, dangerous, and to be avoided. Me, I'd be skipping the place entirely. The therapy area sounds chaotic. All therapists who work with my ds come into his world, join him, and are so intriguing that he comes into theirs. This chick was oppositional and doing compliance drills seemingly. It's fine to respond to a really harmful behavior by walking away and saying Wow, I can't be around you when you do that, I need a break. But he wasn't doing that. She just had some idiotic, possibly not even appropriate list, and he wasn't cmoplying. So it was about compliance. And if you want compliance, well nuts even ABA is more compassionate and skilled than that chick.

  • Like 5
Link to comment
Share on other sites

The inflexibility was affecting his eating, which had become so much of an issue he was losing weight. 

That is no longer the case, though. While his list of things he will eat is very limited, and he isn't flexible with those things, we now have most of the nutrient bases covered by something that he eats. (This was achieved prior to starting with the OT, but after his initial evaluation.)

I mean, eating is still an issue, but I'm more concerned about the sensory and rigidity. And, yes, this particular child's sensory needs are serious. He will spend hours running and throwing himself into, and bouncing himself off of, the same three pieces of furniture in the living room. He spends the majority of his day sensory seeking in some way, shape, or form.

 

We have options, blessedly.  

 

Obvious question, have you set up a room yet? Might as well go ahead and get it done. Because this kid is going to be at that level of needing input for a LONG TIME. So if the county disability funds will help you set up a therapy room in-home, do it. Ball pit, rock climbing wall, hammocks, rope ladders, everything you can imagine. Max out the room.

 

I saw a really cool one in a video, but I don't know if I have the link. The floor was covered 3 feet deep in equipment (foam, balls, mats, you name it) and there were things hanging from the ceiling like a LotR cobweb cave. It was AWESOME. 

 

PS. It's why I keep my ds in so much gymnastics and swimming stuff too. If you can get any of that going, it might help tame it a little.

Edited by OhElizabeth
Link to comment
Share on other sites

We have options, blessedly.

That’s good to hear :)

 

I did quote some parts of your posts previously. Let me know if it is an issue and I will delete the quote.

Link to comment
Share on other sites

 

There is only one I've seen that advertises collaboration with ABAs. The one we're at now didn't advertise as much, and I know I very specifically told the OT that we purposefully did NOT engage ABA. 

Edited by AimeeM
Link to comment
Share on other sites

There is only one I've seen that advertises collaboration with ABAs. The one we're at now didn't advertise as much, and I know I very specifically told the OT that we purposefully did NOT engage ABA. 

 

Well that explains why she has zero knowledge of how to work with your dc.

 

Like it or not, if they have had no training in working with a dc with autism they're not going to be helpful right now. And even if you say well Floortime or RDI or whatever, still you're dealing with a self-selected market on who is willing to go to that and what levels their behaviors are.

 

You should have been treated better. I've been to numerous therapists at the autism charter where my ds receives some services, and ALL of them are compassionate and skillful, despite that nasty horror of ABA happening in the building. Never aversive, always kind. Never the way you were treated. And that's lots of level 3 happening there.

Edited by OhElizabeth
  • Like 1
Link to comment
Share on other sites

What is ABA without aversives and how would I find it? Marco aged out of EI, and I'm meeting with the new disability caseworker he's been assigned, but I have NO CLUE what to ask for.

 

How does ABA work if you can't be home all the time for the therapist to be there? Ultimately, they want Marco doing 20-30+ hours weekly of therapies, but I have a medically fragile 7 year old as well, and a teenager. I'll admit that I'm not comfortable with a therapist coming with us to Middle DS' medical appointments. But those take up quite a bit of time, and when topped out with regular other appointments for myself or DD15... well, we're not home much.

 

I'm really against aversives with Marco, unless they are natural, or a "first this-then that" situation when he always has the chance to do the "first." Today we worked, at home, on a phonics activity. He got half-way through and refused to complete it. I reminded him, "First glue pieces, then play x-box," and he still refused. He melted down. I said nothing. Eventually we simply moved on with our day. Later, when I could see he was calmer, I asked him to complete it again -- and he did so, happily, while proclaiming, "This not so hard!" He had a good experience with it, so (if the course is true to Marco), tomorrow the same thing will go easier and more quickly. But I was able to give him his "then" immediately--and whenever he completed his "first this," as I promised him. 

 

DH is actively working on finishing the basement. It's a feat and he won't hire help :P I have a list of equipment I want for the room, and I'll ask his caseworker about state funding. If they will not fund it, we have resources we can probably pull from to make it happen. 

 

I'm still on the living room floor with him at night :P I would very much like him to have the sensory integration he needs during the day, so that he isn't tempted to get it when he shouldn't (like in the middle of the night).

 

I didn't consider it, either, but you're right -- it sounds like she was working more on compliance than rigidity. I thought DD15 was going to hurt someone, so OT and I only talked for a minute face-to-face after the session, as I hustled the overprotective sister out of the office.

 

Initially when I heard him sobbing (I can hear him from the waiting room), I thought he was simply melting down. There isn't much one can do when he does that. I didn't find out he had been in time out until they came out of the therapy room. She did say she gave him bear hugs during or after the timeout? He likes hugs, but he was sobbing SO hard when he came out of there :(

You've brought up before your discomfort with ABA and I remember you mentioning you were pursuing OT for rigidity/flexibility. Ironically, in-home ABA, done gently, without aversives, actually would be really good for reducing rigidity. We also did art therapy for improving flexibility. Artists are very flexible people, so hanging with them for a while in a therapy setting can rub off! We REALLY enjoyed our art therapy, and I think you can't go wrong with it if you get someone experienced with autism.

 

What I'm a little confused by is that she's working on compliance when you're saying you want to work on rigidity. 

 

I also think it's a mistake to assume this OT was doing anything ABA. I don't really have a high opinion of therapists in general (yes, I'm nasty), and ones in a setting like that in particular are going to be novices, newbies, less experienced. Now you could have a crap experience with someone who has been doing it 30 years, sure! But get a novice, someone who has NO EXPERIENCE WITH ASD3 and pair that with goals she barely knows how to implement that aren't in her real area of training, and what are you getting?

 

Timeouts are typical things you'd do to NT kids. They are even controversial for that. They assume an ability to connect cause/effect. It showed she has no training in ABA, no training in Zones, no sense of ending the session on a good note. If she had ANY, ANY, ANY experience at all, she would have ended the session with something positive, absolutely! People who get autism know what you're saying, that a bad session pairs the bad experience and the therapist, killing the relationship. 

 

This therapist is not worth going back to. Since the practice sent you to her, they're not worth going back to. And since an OT isn't the right way to work on this (sorry), I would move on. Gentle ABA, with no aversives, with a focus on pairing and enjoying each other, would achieve the goal you're wanting with minimal trauma. 

 

OT training is minimal compared to the enormity of the task. Anything they're doing that is autism-specific is stuff they learned AFTER their certification by getting trained by another staff member or going to workshops. Think about that. You could go to workshops and have the same training. They didn't get it in grad school. There are OTs out there doing stuff at $$$$ who are patently unqualified and unskilled. I'll say the same about SLPs. I'm an equal opportunity dumper! I've met some really good ones, yes. The problem is, they are constantly called to work on things outside their expertise, and so they fudge it and fake it.

 

This chick had no clue, and what she did to your ds was dangerous and harmful. You can work on his rigidity yourself, just like the ABA people do. You play games together and bond and do great stuff, and they you *slowly* start to make teeny tiny demands. Not compliance, but little demands like oh I want to do this first or oh I want to color mine green not the color you demanded I use, etc. 

 

Workers who do that, who play and slowly, slowly add little demands and complexities, ironically, are WAY CHEAPER than OT!! Seriously, like my ABA worker, whom I pay to play Playmobil and air hockey and lightbrite and you name it with my ds, is only $15 an hour. OT around here is close to $100. 

 

A lot of these lessons are going to be learned slowly, over time, as his stress level decreases, as his comfort with his routine and the predictability of his routine increases, allowing him to be a bit more flexible. It's not like one hour a week for a semester and boom. It's like we worked on it 10-20 hours a week for a semester and saw some *progress*. 

 

I'm not trying to tell you what to do, because I know you're conflicted on the ABA. I STRONGLY agree with you that the OT is unqualified, dangerous, and to be avoided. Me, I'd be skipping the place entirely. The therapy area sounds chaotic. All therapists who work with my ds come into his world, join him, and are so intriguing that he comes into theirs. This chick was oppositional and doing compliance drills seemingly. It's fine to respond to a really harmful behavior by walking away and saying Wow, I can't be around you when you do that, I need a break. But he wasn't doing that. She just had some idiotic, possibly not even appropriate list, and he wasn't cmoplying. So it was about compliance. And if you want compliance, well nuts even ABA is more compassionate and skilled than that chick.

 

Link to comment
Share on other sites

I agree with OhE about setting up a space. If you can do that, it would be great. I am waiting to see if our son's disability benefit is approved. We don't have the space in the house so I want to build a space in the yard that will function as an indoor/ outdoor gym. If it is not approved we will still go ahead with it but obviously completion will be slower due to budget constraints.

We don't qualify directly for disability benefits (here in the states it is determined by family income), but apparently there is a certain type of funding that can be accessed monthly, in different increments, but must have specific uses (i.e. for certain equipment, classes, etc).

Link to comment
Share on other sites

Well that explains why she has zero knowledge of how to work with your dc.

 

Like it or not, if they have had no training in working with a dc with autism they're not going to be helpful right now. And even if you say well Floortime or RDI or whatever, still you're dealing with a self-selected market on who is willing to go to that and what levels their behaviors are.

 

You should have been treated better. I've been to numerous therapists at the autism charter where my ds receives some services, and ALL of them are compassionate and skillful, despite that nasty horror of ABA happening in the building. Never aversive, always kind. Never the way you were treated. And that's lots of level 3 happening there.

According to her she has experience working with autistic kids :P I know you're probably right and she may not actually, but that isn't what I was told.

 

What is RDI? His long-time, much beloved, ST (who he worked with before we moved) used versions of it during his in-home speech sessions, and it was always a positive experience for him, and she recently suggested I find an RDI therapist, but google isn't bringing much of anything up.

Link to comment
Share on other sites

Good G*d, I'm shocked you didn't go get him. LIke seriously, you KNOW YOUR KID. Why would you let an idiot therapist do that for him? Please step up and realize you know things. 

 

Our developmental disabilities board sent us a wonderful list of the *rights* of people with developmental disabilities. The right to time to yourself. The right not to be restrained unless you are harming yourself or others. On and on. Really obvious when you think about it, but a sign that it's so easy to trample over their rights in the name of autism or whatever.

 

I think you're asking really good questions now. Technically, from what I'm told, a BCBA, as in someone actually recently certified, will be *more* likely to be strictest, by the book ABA. I think you're going to have to ask upfront. Our behaviorist is not BCBA. She was doing this before and didn't go back for that. She *is* definitely a bit out of that and does *not* state she's doing strict, pure ABA. 

 

I think if you talk with them and just ask questions, you'll know. 

 

Ok, I was saying I would have intervened there, because frankly I'm a really socially inappropriate person sometimes. I think what you'll find though, if you shop, shop, shop around until you find someone you CAN be comfortable with, is that you develop a working relationship.

 

I had a VERY hard time accepting ABA in our home. Like I wasn't talking about it much on the boards here, because well it's just not stuff you say. But it was hard for me. You have all kinds of feelings, like will my dc love the therapist more than me, am I failing to parent, on and on. And, because my ds has level 3 aggression behaviors and is non-compliant, some of it was very, very ugly. No aversives were used, NONE. There was nothing there that I as the parent would have stopped if I had been in the room. But just to hear him fussing was hard. It was all hard, sigh.

 

I have to scat. Back later. Keep asking questions. Don't close doors based on assumptions. It could be that every behaviorist for 100 miles is horrible, sure. Or it could be that if you keep searching you'll find SOMEONE who shares your philosophy, someone you could work with. It might be worth trying.

Link to comment
Share on other sites

I thought he was having a meltdown and it can be dangerous to move him during a meltdown. No excusing myself, though -- I should have went in. And then, I heard nothing, so I assumed it was over. It was loud with all of the kids in the therapy room, so I had no clue he'd been in time out. None. Not until they came into the waiting room and he was still sobbing. 

 

And I think I'm too used to having him around people I do trust absolutely. Had it been his EI or ST, I wouldn't have intervened, because they never would have punished him, and I knew that. I may have heard him sobbing, but I would know--because I'm usually involved directly in his therapies--that they were handling it appropriately and Marco loved them, so. Yeah. 

 

ETA: The ABA centers are willing to train someone of my choosing, and pay them to work as an ABA with Marco. Well, my insurance will pay, lol. I do have a close family member who adores Marco who is willing. And I know that she will respect my wishes regarding aversives. Unfortunately, she's crazy busy for the foreseeable future :(

Good G*d, I'm shocked you didn't go get him. LIke seriously, you KNOW YOUR KID. Why would you let an idiot therapist do that for him? Please step up and realize you know things. 

 

Our developmental disabilities board sent us a wonderful list of the *rights* of people with developmental disabilities. The right to time to yourself. The right not to be restrained unless you are harming yourself or others. On and on. Really obvious when you think about it, but a sign that it's so easy to trample over their rights in the name of autism or whatever.

 

I think you're asking really good questions now. Technically, from what I'm told, a BCBA, as in someone actually recently certified, will be *more* likely to be strictest, by the book ABA. I think you're going to have to ask upfront. Our behaviorist is not BCBA. She was doing this before and didn't go back for that. She *is* definitely a bit out of that and does *not* state she's doing strict, pure ABA. 

 

I think if you talk with them and just ask questions, you'll know. 

 

Ok, I was saying I would have intervened there, because frankly I'm a really socially inappropriate person sometimes. I think what you'll find though, if you shop, shop, shop around until you find someone you CAN be comfortable with, is that you develop a working relationship.

 

I had a VERY hard time accepting ABA in our home. Like I wasn't talking about it much on the boards here, because well it's just not stuff you say. But it was hard for me. You have all kinds of feelings, like will my dc love the therapist more than me, am I failing to parent, on and on. And, because my ds has level 3 aggression behaviors and is non-compliant, some of it was very, very ugly. No aversives were used, NONE. There was nothing there that I as the parent would have stopped if I had been in the room. But just to hear him fussing was hard. It was all hard, sigh.

 

I have to scat. Back later. Keep asking questions. Don't close doors based on assumptions. It could be that every behaviorist for 100 miles is horrible, sure. Or it could be that if you keep searching you'll find SOMEONE who shares your philosophy, someone you could work with. It might be worth trying.

 

Edited by AimeeM
  • Like 1
Link to comment
Share on other sites

Glad to hear about the space you have in the works :)

Your overprotective daughter sounds so much like how I was as a teen :)

Edited by Guest
Link to comment
Share on other sites

The autism funding is separate but that will go very quickly given how small the amount is compared to the costs involved. It is why the disability benefit is often added to give the family an additional source. There's many things they factor in so we shall see.

 

Glad to hear about the space you have in the works :)

 

Your overprotective daughter sounds so much like how I was as a teen :)

I know--the costs are making my head spin :P

 

She really is a good sister. Incredibly close to her brothers considering the age difference. Overprotective sounds so negative when I say it, and I don't mean it to be :P Today looked a lot like... she's in the corner next to me, looking pointedly at this OT, and making absolutely no attempt not to sneer when she says, "WHY was my brother in timeout?" and "We don't do things that way," and making what I swear to God sounded like growling noises. 

Link to comment
Share on other sites

When it comes to ABA, it is because I have researched it that I am personally opposed. I disagree with the principal it is based on, aside from the controversies. But that is my personal decision, and I feel every parent has the right to make their own decision on things like that. I linked this in the special needs board yesterday. There's a lot of good info in it, if you haven't seen it:

https://spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/

 

Hoping for the best for your family!

Link to comment
Share on other sites

This is what DIR/ Floortime looks like with younger kids but the principles can also be applied to older kids.

 

 

Sadly, it is relatively new here, I am limited when it comes to people trained for it. In any case, I am looking at OT/ ST for the 8 yr old. I work on the rest myself with book resources. We have come a long way!

Link to comment
Share on other sites

I was 7 yrs older than my younger sister and 3 years younger than my older SN sister. I did a lot of defending and running to get help when my older sister was bullied. It has made me who I am today, in many ways. I'm not rude but I do make my position clear when it comes to my kids ;)

I thought the age gap would be hard (she's almost 8 years older than the middle kiddo, and about 11 years older than our youngest), but it's been great, actually. We just try to make absolutely sure that she has space when she wants it and one-on-one time with us, because it's easy to have the boys' needs take over. 

 

She is still learning how to not be rude when defending her brothers. If I'm honest, I'm not sure she's even working on it. I don't think she cares if she's rude, as long as she gets her point across :P She's an amazing child and a sincerely great teenager. But that mouth, though, when she's angry on their behalf is going to be the death of me :O

Link to comment
Share on other sites

This is what DIR/ Floortime looks like with younger kids but the principles can also be applied to older kids.

 

 

Sadly, it is relatively new here, I am limited when it comes to people trained for it. In any case, I am looking at OT/ ST for the 8 yr old. I work on the rest myself with book resources. We have come a long way!

Is RDI the same as DIR?

Link to comment
Share on other sites

We don't qualify directly for disability benefits (here in the states it is determined by family income), but apparently there is a certain type of funding that can be accessed monthly, in different increments, but must have specific uses (i.e. for certain equipment, classes, etc).

You might check at all the levels. The counties in our state offer funding and do not look at income to qualify. 

  • Like 1
Link to comment
Share on other sites

You might check at all the levels. The counties in our state offer funding and do not look at income to qualify. 

I think that might be what his EI talked to me about? But the funding is capped at $300/month, the caseworker has to submit a detailed request every month (referencing exactly what will be bought, including printed out prices and sources), and it can't be accumulated and then saved :( Most of the equipment is over $300 -- each piece. 

 

I'll ask his actual disability caseworker (we do not meet her for another couple weeks, as his case was just transferred from EI) if she knows of any others.

Link to comment
Share on other sites

Most of the equipment is over $300 -- each piece.

 

Could the supplier work with you to make it on a monthly installment basis (if you explain the situation) and would they be willing to accept it that way?

Link to comment
Share on other sites

Yeah, that's more than 4X what our county does. I can see why they're doing it with monthly allotments like that. To me, that's a small amount of effort to make to request things each month. Get a list of things and get it going, kwim? Or maybe start with LESS than you're thinking. You could collect $100 worth a month of things from a list and put the rest of the money into getting ABA in your home or respite care. 

Link to comment
Share on other sites

Yeah, that's more than 4X what our county does. I can see why they're doing it with monthly allotments like that. To me, that's a small amount of effort to make to request things each month. Get a list of things and get it going, kwim? Or maybe start with LESS than you're thinking. You could collect $100 worth a month of things from a list and put the rest of the money into getting ABA in your home or respite care. 

Our insurance covers ABA and respite care can be provided separately (our state has a disability-based medicaid program that we can apply for that isn't income-based, that will cover the percentage of services our insurance doesn't cover).

 

It can, however, also be used for things a physician has deemed helpful -- like dance lessons, etc -- which is nice :) I just won't know anything else about it or how easy our caseworker is to work with until we meet her ;) Our EI walked us through every little thing, but we saw her weekly, and apparently we will only see this disability caseworker monthly, if that.

  • Like 1
Link to comment
Share on other sites

Btw, did you say you started ILS? It's always suggested that you start just one thing at a time,so you can isolate what is causing things and what has changed. 

She started ILS at the last visit but only for a few minutes. Today was his second time with it, and he kept it on for much longer. On top of a new visual task chart. And a therapy room full of talking children and therapists, which he isn't used to. So, yeah, I know what you mean.

  • Like 1
Link to comment
Share on other sites

Could the supplier work with you to make it on a monthly installment basis (if you explain the situation) and would they be willing to accept it that way?

I'm not sure. These are big-name suppliers, for the most part, and we have no smaller local suppliers, so I doubt it. 

 

I'm looking at the list I have running and it actually isn't as terrible a cost-run-up as I thought. 

Link to comment
Share on other sites

The arrangement in the last therapy session seems to have set him up for failure :(

I hope you find the best solution for Marco! I also hope all works out for the special space and that your husband can finish the space soon ;)

Edited by Guest
Link to comment
Share on other sites

Like it or not, if they have had no training in working with a dc with autism they're not going to be helpful right now. And even if you say well Floortime or RDI or whatever, still you're dealing with a self-selected market on who is willing to go to that and what levels their behaviors are.

I'm not quite sure I understand your comments here! A BCBA runs the program but they are really not the ones doing the therapy. The ones actually working with the child need zero credentials. DIR/Floortime therapists are only trained directly through ICDL or centers licensed by ICDL (with a few exceptions listed at the end that I wouldn't be considering anyway). There are restrictions as to whom can be certified to run a DIR program. You can read here:

 

http://www.icdl.com/education/dirfloortime

 

I have spoken to some behavior interventionists locally. When they know less than I do about autism, thank you... I'll pass! They will train anybody, as you know. How closely they follow the BCBA's instructions... that's entirely up to the person. So it comes down to what I always say, it depends on what one is looking for.

Edited by Guest
Link to comment
Share on other sites

Even my relatively NT kids' *dentist* knows that the ultimate goal. the #1 goal, 100% goal, is to get the kid to be willing to come back for the next session (while still, ideally, completing some dental work!).  If you are lucky enough to have multiple providers available, find another one and leave an honest review for this one if you can.

 

  • Like 2
Link to comment
Share on other sites

Ok, I'll just say this. I would *not* leave a nasty online review, because you're essentially destroying that new worker's career. She was assigned the child, and the management didn't care that she was unqualified. The issue is the management. A more responsible approach would be to call up, talk with the owner, and say Hey, we had some problems in our session, I don't think this is a worker I can go back to, do you have someone SIPT-certified or a top person with more experience with autism whom you'd recommend either at your practice or elsewhere? 

 

That way THEY know they have a problem and need to train their worker more. That girl could be perfectly fine with lower level problems that come in. I would not just leave a review online without trying to do that. And frankly, I think you *could* leave a review onlie for the practice as a whole after you do that. The owner might really apologize and make things right, or you might be dissatisfied. In a practice like that, the online review will be for the overall place, not the specific newbie therapist you used. It was the owner's job to make sure her people were qualified and properly trained. She put HER name on the line with her business, saying these people were worth going to.

  • Like 2
Link to comment
Share on other sites

I am skipping a lot.

 

But if your child earns a reward or completes a "first" to get a "then," then they should *go over their time in the session to do it.*

 

That has been standard for me. I have never been somewhere that wouldn't run over for that.

 

And yes I have been late when this has happened with others -- and I think everyone understands.

 

It is not okay to run out of time for a reward or "then" with a child this age just learning about first/then boards.

 

It is not okay.

 

I would bring this up and expect a good answer.

 

A good answer is either that they will run over time next time, let the "treat" happen in the waiting room or with mom supervising (if you are there anyway), or they will plan to end earlier in the future to make sure they are allowing time for the things that are earned.

 

So to me that is not okay.

 

I am more okay in general with making kids sit in a chair. In some circumstances this would be an acceptable consequence for my son, to me. But if you know that is not acceptable for your child -- then it is not acceptable. You know your child best.

 

Overall I would definitely want the focus to be on positivity and kids wanting to do things bc they are fun and engaging, not doing things to avoid a consequence. I think that is what good therapy looks like.

 

But at the same time -- in context that might be okay with me if I liked other things going on.

 

But if you know it is counterproductive then definitely don't allow it!!!!!!! That is what mom's do :)

 

Edit: I read through some more.

 

I think for now you may need to wait for the more experienced and qualified people to be available, maybe.

 

My son can have newer people now bc he is doing better and mistakes or missteps don't have the same consequence as they did when he was younger and just beginning to learn a lot of things.

Edited by Lecka
  • Like 2
Link to comment
Share on other sites

Our OT never punished either of my children.  If something wasn't going well, she would change course.

 

That said, I was always in the room with them, and both of them were always cooperative.  I don't know what she would have done if they weren't (or I wasn't there), though I suspect that she would have changed course, like I saw her do many times (so that it wouldn't get to the point of refusal).

 

If you like, I could ask her.  She's a friend of mine on Facebook.

  • Like 1
Link to comment
Share on other sites

The poster that mentioned leaving an online review was talking about providers and used the words *honest review*. She did not talk about the specific therapist or use the word *nasty*. There's a difference!

Link to comment
Share on other sites

Our OT never punished either of my children.  If something wasn't going well, she would change course.

 

 

:lol:  You mean the therapist modeled the flexibility she wanted the dc to develop? Never!!   :lol:

 

Everybody can have moments of slow-wittedness, but in my brief experience the therapists and workers who are most rigid are the ones who are struggling. That's why it's obvious, boom, he should not be going back to this one. One simple 5 minute discussion is not going to get her there. She's going to need more experience with easier situations.

 

And there's a lot to what Lecka was saying about who is ready to work with your kid. 

SaveSave

Edited by OhElizabeth
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...