OT for ADHD?

[purpleowl]

Wondering if anyone has experience with getting occupational therapy for a child with ADHD, and if so, did you find it helpful?

Meds (we've tried three) do not seem to be making a difference for my daughter, so I'm trying to think about other options. 

[PeterPan]

Two kids diagnosed, been through quite a few OTs over the years. You've got two angles there. One is why the meds aren't working. (ie. review genetics, review evals, maybe an additional diagnosis is needed).

Then two what OT can do to help. OT doesn't change chemistry obviously, but you haven't established what the chemical problem is. 😉 OT can address (if the OT is trained in these things):

-retained reflexes leading to physical discomfort affecting ability to participate in school work

-sensory issues affecting ability to participate

-emotional awareness affecting ability to self advocate and self regulate

-emotional regulation affecting ability to participate

-discomfort with the physical acts of school like writing, posture, visual perception, etc.

There's probably more but that's a start.

Your dc could have any or all of those things going on. It's a pretty reasonable assumption that she'll have some retained reflexes. The sensory and the rest, well that just varies with the kid.

If an OT is *not* trained in any of those things (which are all way beyond what they learn in grad school for OT typically), then you'll get a really basic, routine type eval that may or may not show anything and wonder why you bothered. Because these are all additional trainings the OTs seek, it just varies as to what your person will be trained in. Shop around, ask questions. 

OT can feel like you've turned into a cash cow, but that usually means you've exhausted what that person knows to do for you. To me, therapy is not personal, just business. You provide the service, I pay. So shop around and find someone who has the training to do what you need and you'll probably be happy. And when that person is no longer resulting in amazing change, find someone else. Or get trained and do the things yourself. If one dc needs it, usually more do. Sigh.

[PeterPan]

We're doing OT again btw and ds is 13. He started OT pretty young, had it on and off. Dd did OT. They really do just vary and each one has gotten trained on something different that they bring to the table. You'll very seldom find ONE who is like oh yeah I know EVERYTHING and actually does, kwim? Like I had one who was trained in Hanen (talk/play therapy for early years autism) who brought that into handwriting and overall development. She wasn't going to get good at Interoception (self awareness leading to self advocacy and self regulation) because she already had a focus and how she rolled. Now a sensory person might be trained on Zones (emotional regulation) but might not know the Interoception part which is much newer training. And finding reflex work, well that's could be ANOTHER person. LOL

There are OTs who specialize in assistive tech and that's all they do is assistive tech. The OT field is so big that to get good at something they end up kind of niched. 

So you just start somewhere, you learn, you unwrap the package and see what you've got, kwim? 

You're thinking about it holistically, what would help her function better in her learning environment and what is holding her back? Nobody realistically thinks OT will cure/reverse OT (though there is a book that claims this, haha), BUT you can get them a lot more comfortable in their bodies and a lot better at being self aware and self advocating and self regulating.

Edited June 6, 2022 by PeterPan

[PeterPan]

Things an OT would do that you can also do yourself... **This is not all they would do. I'm just cherrypicking things you can do.**

-Zones of Regulation

-Interoception

-test for retained reflexes. There are tests on youtube and there are systems that have specialized training. You could at least start the process. Pyramid of Potential got us a lot of mileage and I think they have a video for $35. We're doing Musgotova now with an OT. That's very $$$ training.

-try a lot of sensory experiences and see what patterns there are to what they like. (what genres of music make them feel peaceful, how intense flavors like cinnamon candies affect them, textures of fabrics, crunchy vs. soft foods, etc.) They'll call this a sensory diet, but to me it's self-awareness. We want to do more of what makes us feel good and recognize what makes us feel good so we can select these things. Then they can make environments that are restful to them, especially their bedrooms, school workspace, or private break spaces. If they don't have these spaces or freedom to alter them, it can be a good project.

-explore types of movement to see how affects their energy level and how they feel. https://autismlevelup.com/energy-meter/  Ignore that it says autism and just look at the energy meter. There are similar approaches under different names but this is more mature for an older student. They could try some yoga, running on a treadmill (10 minutes), a variety of activities, and see how their energy level is after that, whether it makes them feel good, whether it brings them in ready to work or is the opposite. There are youtube videos for yoga on the internet. I particularly like the Five Parks Yoga. 

-do metronome work together--This is more of a long shot, but it can uncover weaknesses or be something easy for you to do with her. You set the metronome to 54bpm and then try to do basic tasks together. Heathermomster had posts on it where she detailed exercises. My ds had a really low starting point, as he struggled even to do a task like clapping a few times. So you can try it and see what happens. Literally just try to clap to the metronome, bounce a ball to the metronome, etc. and see how it goes. Then you can take it sky high. Lets you target that prefrontal cortex where the EF (executive function) is.

-do activities that build working memory and incorporate the ability to motor plan or use language while using working memory. Working memory increases will help make her more functional.

And just as a total aside, has this dc had a hearing eval, a really thorough one, ideally with some serious APD screening? How is this dc in noisy situations? The symptoms of the language processing issues of APD and ADHD are going to overlap. 

Edited June 6, 2022 by PeterPan

[purpleowl]

Okay, more info on the child in question:

ADHD is the only thing she has been evaluated for (though that eval did include an IQ test, which showed that she is profoundly gifted).

Both the person who did the ADHD eval and another provider who observed her for a bit also questioned whether she might also be autistic. There are things that point to that, and things that point away from it. She definitely has some sensory issues and some social issues. The giftedness can make it harder to get autism diagnosed. Her younger brother is diagnosed as autistic and receives both OT and speech.

I am not concerned about her academics. She has always been homeschooled and we expect that to continue. We've been pretty sure she has ADHD for a long time, and I have been able to adapt things for her. But eventually we got to where the impulsivity and difficulty focusing (and sometimes hyperfocusing) were bothering HER. That's why we pursued the eval. 

[kbutton]

2 hours ago, PeterPan said:

Nobody realistically thinks OT will cure/reverse OT (though there is a book that claims this, haha), BUT you can get them a lot more comfortable in their bodies and a lot better at being self aware and self advocating and self regulating.

There are some patterns to whether or not OT will nail the coffin shut on some issues though...for instance, kids with connective tissue disorders tend to not seem to be able to have completely integrated reflexes even with specialized therapy for it. It's more like tamping them down until the next flare-up. That does NOT mean that therapy will not help. It can still really make things a lot better, and some gains will get you a lot closer to normal. 

I think having a pervasive developmental disorder in the mix is also a risk factor for not quite reaching full integration of reflexes/resolving sensory issues, but my kiddo with autism/ADHD/profoundly gifted has responded optimally to every appropriate therapy he's received, so even that is not a 1:1 prediction.

1 hour ago, PeterPan said:

-do metronome work together--This is more of a long shot, but it can uncover weaknesses or be something easy for you to do with her. You set the metronome to 54bpm and then try to do basic tasks together. Heathermomster had posts on it where she detailed exercises. My ds had a really low starting point, as he struggled even to do a task like clapping a few times. So you can try it and see what happens. Literally just try to clap to the metronome, bounce a ball to the metronome, etc. and see how it goes. Then you can take it sky high. Lets you target that prefrontal cortex where the EF (executive function) is.

And just as a total aside, has this dc had a hearing eval, a really thorough one, ideally with some serious APD screening? How is this dc in noisy situations? The symptoms of the language processing issues of APD and ADHD are going to overlap. 

I agree with the whole post. Regarding metronome work, you can also sometimes solve this with musical training as long as it's well-rounded and includes some kind of rhythm work. Percussion is great for this, but it doesn't have to be work that is that baldly rhythmic. 

I highly recommend an APD screening with someone from https://www.igaps.org/. That can have a really big sensory component as well as overlapping with ADHD. 

12 minutes ago, purpleowl said:

Okay, more info on the child in question:

ADHD is the only thing she has been evaluated for (though that eval did include an IQ test, which showed that she is profoundly gifted).

Both the person who did the ADHD eval and another provider who observed her for a bit also questioned whether she might also be autistic. There are things that point to that, and things that point away from it. She definitely has some sensory issues and some social issues. The giftedness can make it harder to get autism diagnosed. Her younger brother is diagnosed as autistic and receives both OT and speech.

I am not concerned about her academics. She has always been homeschooled and we expect that to continue. We've been pretty sure she has ADHD for a long time, and I have been able to adapt things for her. But eventually we got to where the impulsivity and difficulty focusing (and sometimes hyperfocusing) were bothering HER. That's why we pursued the eval. 

Besides giftedness, being female makes it harder to get diagnosed. 

My ASD kiddo is profoundly gifted and in some ways presents like a girl. He responds amazingly well to ADHD meds.

My other kiddo looks ASD on paper, but he isn't. His sensory issues are more related to a connective tissue disorder, but it's like he's collected parts and pieces of all the stuff that spectrum siblings tend to potentially have, but all of his issues are mild and sometimes subtle. It's like being nibbled to death by a duck in his case--nothing glaring, but lots of small, chronic stuff is eating away at his bandwidth. His APD was very nuanced but persistent, and he had excellent therapy for that. That was a huge deal and very much worth our time and effort. He is my kid that doesn't respond all that well to ADHD meds. They do make a difference, but it's not night and day like it is for his older brother. He has to overlearn a lot of motor stuff and routines. Getting him out of his head is a challenge. 

[purpleowl]

She is generally quite happy in noisy situations. She strongly reacts to startling noises though.

She is a very musical kid. She has been doing children's choir and piano lessons since she was 3 (she is 10 now), and she also does well with handbells. 

Looking at symptoms of APD and various connective tissue disorders, I really don't see those as likely dx for her.

[Lecka]

I think it’s one of those things you just have to try and see.

For anecdotes I have heard — success can look like — kids have exercises they do before they need to focus, and then focus much better.  
 

I have not heard “in real life” anecdotes where it’s like — do a course of OT and then have permanent improvement for ADHD.  
 

I have heard very positive things as far as — kids learning to notice they should do their exercise, planning to do their exercise, and really liking it and finding it easier to concentrate.  
 

I’ve also heard good things about all the things that are based around “making it easier to sit,” like sitting on yoga balls with a frame, wobble chairs, exercise bands around chair legs, etc etc.  

[Lecka]

To me — I would ask the younger brother’s OT if he/she knows anyone working with her age group/level/profile.

If you want to try OT — you want to try OT.

If you are just looking around for “something, not ADHD medicine” I think I would say to look at the “maybe autism” angle.  
 

I definitely hear about kids with autism where the ADHD medicine is not as effective as it was thought it was going to be.  I think that can be a thing.  But — since my son has autism my selection is 100% kids who turn out to also have autism, basically 😉. 

[Lecka]

But really — there is some instinct that is saying “I think OT could be helpful” and I think that is something to pay attention to.

But the truth is I think it’s something that is often “try and see.” But that’s not a bad thing at all — it’s just, really I think it’s hard to predict and kids have different responses.  

[Lecka]

As far as “what else is there besides OT” there’s a category of “executive functioning supports” but with homeschooling etc suspecting ADHD for a while etc you may already be doing a lot of that.  Still it’s a good category.  

[purpleowl]

I'm definitely not looking for a "cure." Just wondering about kids gaining tools that can actually help them manage the issues that ADHD causes. Strategies to help them remember to think before acting or speaking. Strategies to use when they recognize that they're having trouble focusing. That sort of thing. 

I think DD could also benefit from some of the emotional regulation stuff that DS's OT does with him, but that would be a bonus. 

I hear about how great ADHD medication is for kids, how parents wish they'd gone that route earlier, etc., and I was on board with trying that. But so far it's getting us nothing, except a side effect of anxiety with the most recent option. So I want to ask about an OT referral the next time we see the pediatrician for a med check, but I'm wondering if others have found it a helpful way to go. 

[Lecka]

There are definitely people it helps.

Its the same as ADHD medication — there are definitely people it helps.  
 

But at a certain point you just have to try and see what happens.

I think it’s a totally mainstream thing to try.  

[PeterPan]

8 hours ago, purpleowl said:

Looking at symptoms of APD and various connective tissue disorders, I really don't see those as likely dx for her.

Good.

6 hours ago, purpleowl said:

I'm definitely not looking for a "cure." Just wondering about kids gaining tools that can actually help them manage the issues that ADHD causes.

I'm with you on the tools!

9 hours ago, purpleowl said:

another provider who observed her for a bit also questioned whether she might also be autistic. There are things that point to that, and things that point away from it.

The older she is, the more imperative it is to move on the ASD question. You're looking for a psych who has significant experience with girl ASD. An autism school, someone on the Hoagies Gifted list. Atwood has a book on girl autism. 

Fwiw, given the genes and the oddity of the presentation, I'd assume she is and move forward. She doesn't have to look like her sibling to have challenges. This might be helpful https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile

6 hours ago, purpleowl said:

I think DD could also benefit from some of the emotional regulation stuff that DS's OT does with him, but that would be a bonus. 

Is the OT doing Zones of Regulation or Interoception or another system? Interoception is always the most foundational piece. https://www.kelly-mahler.com/what-is-interoception/  

6 hours ago, purpleowl said:

Strategies to help them remember to think before acting or speaking. Strategies to use when they recognize that they're having trouble focusing. That sort of thing. 

Think about the issues going on there. If someone has low processing speed, it might take them longer to make the connect than the situation allows. If someone has social thinking and perspective taking deficits, they might think all day and never come up with a pro-social, socially expected answer, lol. But then you've got this totally other issue, which is "recognizing they're having trouble focusing." That self-monitoring you're wanting is self-awareness, the INTEROCEPTION piece.

So remind me, why were you asking if OT would help? Why don't you ask the OT you're already using for your ds? You don't find much changing? Then the problem is that OT. I've been through so many that it's pretty easy to give up on the profession, I get it. What you might do is go on the Interoception FB group and see if you can get someone to work with her via tele. That way you have a wider net and can get someone amazing, someone with experience working with her IQ level.

Be picky and get the right person. This is not the time to horse around. I say this as someone whose dd did OT at that age, sigh. The years are going to go by VERY QUICKLY and your window to help her is brief. Since you know she has sensory and interoception issues, find an OT to nail that. And get someone (probably a psych) specializing in ASD in high IQ girls to address that question. When you find that person, then have them continue working with her on cognitive strategies, social skills, etc. Or see if the OT you find has a recommend for a really good SLP for social thinking. But really, given her IQ she's going to be happier talking with a conversant phd psych. The Social Thinking site has a list of books, which you can get from your library system hopefully. Then they can go through them and pick books that interest her to discuss. She may have *holes*, little nibbly holes that could be addressed.

The psych will be able to pull together the thought processes of the self awareness and self advocacy and get it applied to life. When you get the right psych you'll know because they'll click and have those conversations without you having to figure out what she's supposed to be discussing.

6 hours ago, purpleowl said:

except a side effect of anxiety with the most recent option.

It's a discussion to have with the psych, but I think they're going to suggest that the meds *reveal* the anxiety rather than *creating* the anxiety. I'm not saying stay on the meds but just that anxiety probably needs to be on the table as a discussion. It's another reason to bring a psych on board after she gets some OT for the sensory and interoception. At that point she'll have enough self awareness and language to say for herself when she's having anxiety, especially if it's subtle or if she has been masking. She may be so used to how her body feels now (uncomfortable) that she doesn't have perspective on how good it could feel. 

6 hours ago, purpleowl said:

I'm wondering if others have found it a helpful way to go. 

The OT then psych (plus another PhD counselor, as in two PhD people) is what my dd did, so that's why I'm suggesting it. We got help with retained reflexes later and my dd's were very hard to either integrate or *keep* integrated. I think she is a physically more complicated case, sigh. We had my ds' testing as integrated and his slightly re-emerged, which is why we're working on them again. 

The OT work isn't going to do anything for the actual impulsivity, but it may make her body easier to live in. If she's over-reactive in some scenarios because of retained reflexes, it will tamp that down. And increasing her interoception will allow HER to say for herself what she needs, which at this point is actually what you need to have happen. It's like I tell my ds, who is 13. If he tells me what is going on, then I can help him problem solve. If he can't tell me what is going on in his body or what he's feeling, then I'm just GUESSING. So the best scenario is for our teens to grow in their self awareness and self-advocacy. They can then advocate for themselves what will help them. And yes, OT for retained reflexes, sensory, and Interoception will be amazing for that. Follow up with psych sessions and you'll be on track probably.

Edited June 7, 2022 by PeterPan

[PeterPan]

9 hours ago, purpleowl said:

But eventually we got to where the impulsivity and difficulty focusing (and sometimes hyperfocusing) were bothering HER.

Just a total aside, but this is so interesting. Is she bored? 

[Storygirl]

I'm not going to be much help with your question about OT. DS did have OT when he was younger, but I can't say that it helped him with his attention. His OT specialized in sensory issues and things like proprioception.

But I wanted to comment about meds. I think it took trying five different medications for ADHD before we found one that worked for him. And when it worked, it really worked. Then a few years later, we adjusted the dosage a few times, then switched to another medication. Etc. So, I would not necessarily give up on finding something that will work. I know it's really a difficult thing to keep trying.

Whether it is via meds or another tack, I hope you find something that helps!

[PeterPan]

8 hours ago, purpleowl said:

She is generally quite happy

I know I cherry picked this, but there you go. She's very lucky to have you pushing to get her access to these things. It's much harder for a girl if you wait till they're adults and have these questions. The system isn't set up as well to make the services happen at this point. So even though it feels odd (because in many ways she's probably highly functional compared to her diagnosed sibling), still she deserves to have the targeted intervention that would answer her questions and get her where she can be. It will help head off some problems later.

[EKS]

19 hours ago, purpleowl said:

ADHD is the only thing she has been evaluated for (though that eval did include an IQ test, which showed that she is profoundly gifted).

I suspect that whatever ADHD behaviors you are seeing are actually manifestations of the giftedness. 

Try radically altering whatever it is you're doing with her to make it much more interesting--not "challenging," interesting.  What interesting means will depend on her, but since the world is inherently interesting, once you find a catch point, it should get easier to find others.

 

[prairiewindmomma]

20 hours ago, purpleowl said:

I'm definitely not looking for a "cure." Just wondering about kids gaining tools that can actually help them manage the issues that ADHD causes. Strategies to help them remember to think before acting or speaking. Strategies to use when they recognize that they're having trouble focusing. That sort of thing. 

I think DD could also benefit from some of the emotional regulation stuff that DS's OT does with him, but that would be a bonus. 

I hear about how great ADHD medication is for kids, how parents wish they'd gone that route earlier, etc., and I was on board with trying that. But so far it's getting us nothing, except a side effect of anxiety with the most recent option. So I want to ask about an OT referral the next time we see the pediatrician for a med check, but I'm wondering if others have found it a helpful way to go. 

For us, we saw a bump in anxiety in one of ours when we started meds.....the anxiety was always there, but the meds gave them enough of an ability to string thoughts together and develop self reflection that the anxiety seemed to surface more. Therapy helped (with a therapist that focuses on adhd and autistic teens), and learning to recognize and name feelings and triggers greatly reduced the anxiety (as shown by screening tests). 

I'd do the sensory work. And, yes, it has helped here. And, yes, the sensory was contributing to the anxiety. If you don't feel physically safe and relaxed that reflects back, iykwim.

 

[PeterPan]

Just as a suggestion, if the person is not particularly self aware and Mom is trying to GUESS from the outside what is going on with the ADHD meds, it might be worthwhile to get some data made in a quantitative way. Some people here have had their psychs do before and after testing with sustained attention tests to see how the meds actually were affecting the dc. Then you'd at least have something concrete.

It is definitely considered the case that the anxiety with the meds is revealing, not causing. And if the meds were helping her function enough more that the anxiety became obvious, then maybe they were helping attention and she didn't realize it? If she's not strong on self awareness, it's going to be hard for her to self advocate on that. 

You could bump the interoception first then go back at meds. 

 

[kbutton]

On 6/6/2022 at 3:21 PM, purpleowl said:

She is generally quite happy in noisy situations. She strongly reacts to startling noises though.

She is a very musical kid. She has been doing children's choir and piano lessons since she was 3 (she is 10 now), and she also does well with handbells. 

Looking at symptoms of APD and various connective tissue disorders, I really don't see those as likely dx for her.

An OT that is strong on sensory can more than likely help with strongly reacting to startling noises. My ASD kiddo was the same--he still finds them annoying, but he no longer reacts with fight or flight and blank spots in his memory after doing things like knocking people down if they approach him from behind in a noisy room. 🙂 Yep, it was really that bad. He needed a combination of spinning, heavy weight, compression, and a brushing protocol. Took a few sessions to find the right combo of the first three. The brushing was done a strict schedule, made things worse for a day or two, and then he remarkably calmed like someone flipped a switch while we finished out the brushing protocol. I would never do the brushing on my own unless I had no other choice--it was so weird that if we didn't have an OT talking us through it, we'd have quit in the middle and made things worse.

On the APD, you can have super pigeonholed issues that encompass only some of the symptoms but still be really difficult--there are tons of different profiles. I would keep the idea in your back pocket just in case, but if you don't see much happening, it's good to have one less thing to worry about.

Music is so good for brain development--I am glad she has that on board. 

On 6/6/2022 at 5:11 PM, purpleowl said:

I'm definitely not looking for a "cure." Just wondering about kids gaining tools that can actually help them manage the issues that ADHD causes. Strategies to help them remember to think before acting or speaking. Strategies to use when they recognize that they're having trouble focusing. That sort of thing. 

I think DD could also benefit from some of the emotional regulation stuff that DS's OT does with him, but that would be a bonus. 

Have you tried mindfulness stuff? I think we're going to go that route with my younger DS that is less responsive to ADHD meds; I think he's finally at a place where he could do it and benefit; he's an odd mix of self-aware, totally not self-aware, and very introspective. (He wants to be a music therapist, and he's always tried to analyze people--I think he was 7 or younger the first time he used Lego Chima characters to describe people the way that personality tests describe people, lol!!! When he found out that personality tests were a thing, he was hooked instantly.) He's a very "in his head" kid and would be even if he didn't have ADHD. He appreciates physical prompts to pay attention. For instance, he has some physical limitations for a few weeks post surgery, and we had to put post-it notes with big red x's on certain things where he needs assistance so that he won't do those things mindlessly. 

Definitely ask your son's OT to do the emotional regulation stuff with your DD. I think that's worth a lot!

Sometimes these things improve by degrees and in a variety of directions vs. being one solution. I have one kid that seems to have major leaps with single solutions and one that really requires a lot of different things from different angles. 

[PeterPan]

4 hours ago, kbutton said:

I have one kid that seems to have major leaps with single solutions and one that really requires a lot of different things from different angles. 

That is the story of life, lol.

[prairiewindmomma]

Startle and sensory issues (loud places especially) rise and fall with anxiety levels here and this seems to be true for the majority of people we know IRL.

[purpleowl]

Thanks for all the comments.

Peter Pan, I'm not sure where you got the idea that I am unhappy with my son's OT; I am very pleased with what she's doing with him and had always been planning to ask her about this as well. I just also wanted to ask other parents about their experiences.

Anyway, I did bring it up to DS's OT, and I am planning to talk to the pediatrician about a referral the next time DD has a med check appt.