OT for SPD

[PeterPan]

Ok, I'm spinning this off, because it really is its own topic.  I was under the *assumption* that getting my ds in for OT would be super amazing for his sensory issues.  Thing is, gymnastics is super amazing, chilling out a lot of the crashing.  Shhh, but I wasn't really impressed with his first OT eval (private).  She just didn't inspire me at all as having a plan that was going to make a radical change.

 

I'm using the term SPD here, because that's how the ps seems to parse it out, separating out each little thing.  So I'm thinking specifically of the sensory here and stimming and repetitive behaviors.  For instance, flapping and flicking, is anything going to alter that besides personal choice and awareness with time?  He's hyposensitive, big time hyposensitive.  Is anything ACTUALLY going to alter this? He injures himself and is not particularly self-aware (hunger, need to potty, etc.).  Can OT affect this?

 

See, I'm trying to figure out how I know what my goals should be for the OT and how I know if I'm adequately treating it.  I think according to some OTs he should become their perpetual cash cow, coming for sessions while they do all these fun things for midline, etc. with him.  And a year of that and thousands of dollars later, what will I have accomplished?  Then I talk with someone else, who also went to a good OT, and that dc had 12 weeks, bam done, and that child made quantifiable progress.

 

Any tips on what I'm looking for or trying to make happen?  Time frame to expect?  

[Arcadia]

This is going to be YMMV. My oldest flap and rock a lot since newborn. It decrease as in he has more control around 8. Now it is rare for flapping and rocking has stopped. My youngest wasn't potty trained until after six because he has no reaction to soiled diaper or underwear . That was why we did an online public charter. He doesn't react to pain either and blood draw was easy but in a scary to me way. He just doesn't feel any pain from blood draws with big syringes. Now he is able to feel a normal (to me) threshold of pain like toothache, bruise from falling.

Both don't qualify for OT under insurance so it was just monitoring every well baby to see if there were improvements or deteriorations. I did use the advice in the Out of Sync child book and it helped. My oldest was very similar to the first case study.

[wapiti]

I might have had something to say about under-responsive but I can no longer remember  :tongue_smilie: (too much reading of scientific journal articles about other stuff).  I'll try to remember in the morning.  In the meantime, another vote for Out of Sync Child and Miller's book (I spoke w/her)

[PeterPan]

Oh I know, and I've got OOSC and I have a single line swing, weighted collar, burrito roll him, give him gymnastics, etc. etc.  I'm more trying, specifically, to figure out how much OT I need to do to know I've done a good job.  As opposed to the not done job I did on my dd that I'm going back now and trying to fix.

 

Is OT for this supposed to be a long-term process or brief to be successful?  

[wapiti]

FWIW, Miller's clinic prefers short, intense treatment periods.  Their usual protocol is 3x per week for a month, then a month off, then 2x per week for a month.  (Dd and ds did this years ago, in combo with listening therapy, as in listening-while-doing-OT.)  Something about neuroplasticity.

[texasmama]

It so depends on the child.  Mine had OT beginning at age 3, which continued most of the years until he was 12.  Ours was free through the public school system so cost was not an issue.  However, what I noticed is although the activities did not seem complex and I did not note "improvements", what I noted was HUGE, marked regression in his emotional regulation when he was more than 3 weeks out from an OT session during most of those years, to the point that he received two summers of OT to keep him on track.  My ds has retained primitive reflexes which finally started going away when he was about 10-11 after YEARS of OT.  

 

Also, he still has proprioceptive issues.  And OT did not cure any of his other issues.  But it was a lifeline which made him able to function and learn during the years he received it.  Without OT, he had frequent emotional meltdowns during schoolwork, and all learning halted.  OT helped him hold it together.  My ds is a combination of sensory seeking and avoiding.  He needs some input for the proprioceptive support, but he still flinches when something comes close to his face in a way that most people do not because he cannot judge how far away an object is to him.  What has helped him with this more than anything probably is playing basketball.  He is tall and is now a center/power forward (the 4/5 position), which requires a lot of in your face contact with the opposite team.  He has played every year since kindy.  His OT worked with him on his shot because he was doing  weird crossover thing.  He wears a tight under armour shirt under his jersey, and for awhile he wore a wrist brace which helped him straighten out his shot.  Basketball is really important to him.  He started with Upward from K-6th.  Then he moved to a competitive homeschool league coached by dh.  He was absolutely terrible for a few years and then slowly the muscle memory kicked in.  He is pretty good now, and he does not give up.  :)  (A little off topic but not really.  It is all related to his functioning.)

[texasmama]

Also, OT has been the single most effective intervention for my son.  This varies for each kid, but without OT, I don't know where he would be.

[Crimson Wife]

 

So I'm thinking specifically of the sensory here and stimming and repetitive behaviors.  For instance, flapping and flicking, is anything going to alter that besides personal choice and awareness with time?  

 

He's hyposensitive, big time hyposensitive.  Is anything ACTUALLY going to alter this? He injures himself and is not particularly self-aware (hunger, need to potty, etc.).  Can OT affect this?

 

We haven't had insurance that recognizes SPD as a valid diagnosis, so all the SI work in OT has been "unofficial". The "official" goals submitted to insurance have to do with fine motor and self-help.

 

We haven't done OT recently because my DD has been doing 20 hrs/week of ABA and that targets a lot of the same goals. For example, the ABA team is working on penmanship, tooth brushing, etc. She also has a motor goal that I forget how exactly it's worded in ABA lingo but basically is designed to help her in her Special Olympics track & field long jump event. She's having trouble remembering exactly where she needs to stop running and jump forward. The line is about a foot behind where the track surface ends and the sand pit begins. She has a tendency to run past the line and jump from the edge of the sand pit. Or she'll jump vertically at the line and then keep running forward to the edge of the pit.

 

OT definitely helped with the motor and self-help goals. The SI work done unofficially helped her calm down and stay focused enough to do the rest of the OT.

 

I wish that I could say something has helped with the hyposensitivity but nothing we've tried has made a difference. Not OT, not ABA, nada.

 

USC has made the first part of the SIPT training course available to the general public. It's not cheap, however. You might get some of the benefit from reading the required books for the SIPT training. http://chan.usc.edu/academics/usc-wps-certification/course-1

 

[Plink]

OT was strange to watch from the outside, but it worked for us despite my doubts.  Brushing, spinning, compression, and all the other seemingly disconnected activities helped to stimulate my DD's system.  She went in unable to detect cold, not knowing what it meant to be dizzy, and unable to self soothe.  She came out still with many issues, but with a basic awareness of those sensations and we had a base upon which to build.

 

That said, I would not expect a magic solution to the flapping or stimming.  As I'm sure you know by now, you will need a full team to deal with all of the many aspects of your child's diagnosis, and one of the key pieces to work on is anxiety.  When your child is able to better cope with their anxiety, that is when you will see the flapping begin to recede.  

[Crimson Wife]

FWIW, Miller's clinic prefers short, intense treatment periods.  Their usual protocol is 3x per week for a month, then a month off, then 2x per week for a month.  (Dd and ds did this years ago, in combo with listening therapy, as in listening-while-doing-OT.)  Something about neuroplasticity.

 

We had a similar on-and-off schedule with OT. 3 months on and then 3-6 months off. They did it to manage their waitlist but it was actually good to have the breaks because it allowed for enough new self-help and motor goals to keep our insurance happy.

[PeterPan]

FWIW, Miller's clinic prefers short, intense treatment periods.  Their usual protocol is 3x per week for a month, then a month off, then 2x per week for a month.  (Dd and ds did this years ago, in combo with listening therapy, as in listening-while-doing-OT.)  Something about neuroplasticity.

I had never heard of this!  So what is Miller's book?

[PeterPan]

Texas, that's fascinating!  A psych had suggested we pursue a team sport, but I didn't know what it should be.  The Upwards basketball sounds reasonable, hmm... My dh has this fettish and thinks you should wait until they're old enough to do it "right".  I'm with you though that for some kids it's going to take longer.  Ds is sort of middle of the road, not as snappy on learning motor planning as he should be but not so low that he gets diagnosed either.

[PeterPan]

Also, OT has been the single most effective intervention for my son.  This varies for each kid, but without OT, I don't know where he would be.

Ok, so you're saying OT will help with emotional regulation?  That would be wild.  And helpful, lol.   What kinds of things were they doing?  Just a variety?  But you're saying you got just more emotional *stability*?  So a short term thing would target specific issues but long-term will work on self-regulation and the (removing words like almost bipolar) thing we've got going on?  So does rigidity improve or flexibility too?  Outbursts? Ability to sense when hungry, when this and that?

[PeterPan]

I wish that I could say something has helped with the hyposensitivity but nothing we've tried has made a difference. Not OT, not ABA, nada.

 

USC has made the first part of the SIPT training course available to the general public. It's not cheap, however. You might get some of the benefit from reading the required books for the SIPT training. http://chan.usc.edu/academics/usc-wps-certification/course-1

 

Thanks for that bit of discouraging news, lol.   :D  I love hearing about your dd's track & field progress.  That's awesome!  And yes, we get some of that in gymnastics too.  They use cool techniques like putting down vinyl circles or arrows so the child knows put your foot HERE when you do xyz.  Cool.

 

I'll go check out that SIPT course stuff.  You're right, that would be right up my alley to learn about next!   :)

[Crimson Wife]

Texas, that's fascinating!  A psych had suggested we pursue a team sport, but I didn't know what it should be.  The Upwards basketball sounds reasonable, hmm... My dh has this fettish and thinks you should wait until they're old enough to do it "right".  I'm with you though that for some kids it's going to take longer.  Ds is sort of middle of the road, not as snappy on learning motor planning as he should be but not so low that he gets diagnosed either.

 

AYSO has a special needs soccer division called V.I.P. and Little League has a special needs division called Challenger. We're considering special needs color guard and/or cheer but the local teams for those are for older children (8 for color guard and 10 for cheer). The cheer coach was willing to do a younger kids' team if there was enough interest but so far there hasn't been.

[Crimson Wife]

Ok, so you're saying OT will help with emotional regulation?  That would be wild.  And helpful, lol.   What kinds of things were they doing?  Just a variety?  But you're saying you got just more emotional *stability*?  So a short term thing would target specific issues but long-term will work on self-regulation and the (removing words like almost bipolar) thing we've got going on?  So does rigidity improve or flexibility too?  Outbursts? Ability to sense when hungry, when this and that?

 

To the extent that the SPD contributes to hyperactivity in my DD, the OT does help with emotional regulation. When she gets overly excited, doing the Wilbarger brushing technique helps calm her down. I've heard that it can be helpful for anxiety but that fortunately doesn't seem to be much of an issue for us.

[texasmama]

Texas, that's fascinating!  A psych had suggested we pursue a team sport, but I didn't know what it should be.  The Upwards basketball sounds reasonable, hmm... My dh has this fettish and thinks you should wait until they're old enough to do it "right".  I'm with you though that for some kids it's going to take longer.  Ds is sort of middle of the road, not as snappy on learning motor planning as he should be but not so low that he gets diagnosed either.

Upward is non-competitive and gentle. Everyone gets the same amount of playing time.  They don't even keep score in the early years.  It is about learning a few basic skills and how to be part of a team.  It is silly to wait to learn something until you can do it "right".  No one can do anything right at first.  Your ds would do very well in Upward sports.  Many local churches have Upward programs.  The season here runs from December to early March, with sign ups at the end of October.  

 

Basketball is the sport we have chosen because of our amazing height.  :D  Dh plays, too. It is fast-paced and works on the skills my ds needs.

[texasmama]

Ok, so you're saying OT will help with emotional regulation?  That would be wild.  And helpful, lol.   What kinds of things were they doing?  Just a variety?  But you're saying you got just more emotional *stability*?  So a short term thing would target specific issues but long-term will work on self-regulation and the (removing words like almost bipolar) thing we've got going on?  So does rigidity improve or flexibility too?  Outbursts? Ability to sense when hungry, when this and that?

Our OT did the Ready Bodies, Learning Minds curriculum with ds.  It did help with his emotional regulation because the physical activities helped arrange his neural synapses to be more stable or something.  I can't say that I completely understand how.  My ds was not terribly rigid and unflexible with anything except for food before he hit adolescence.  Now he is more rigid and inflexible...or the difference between him and his NT same-age peers is more pronounced due to them maturing in this area and him not.  He had many fewer emotional meltdowns.  These would happen several times a week during math, and we sometimes lost the rest of the day or half a day to the emotional dysregulation.  He is still helped by physical activity.  I suspect that all of us are, that if we all started the day with a brisk walk or some jumping jacks that our minds would function better.  However, with my ds the physical exercises were essential to his learning process because they allowed him to manage a higher level of frustration without melting down in a puddle of tears.

[PeterPan]

To the extent that the SPD contributes to hyperactivity in my DD, the OT does help with emotional regulation. When she gets overly excited, doing the Wilbarger brushing technique helps calm her down. I've heard that it can be helpful for anxiety but that fortunately doesn't seem to be much of an issue for us.

We did the brushing and he ended up so whacked he wet himself tons of times the next day.  We gave up on the brushing, figuring we must need some help to determine a protocol that was right for him.  :(

[PeterPan]

Upward is non-competitive and gentle. Everyone gets the same amount of playing time.  They don't even keep score in the early years.  It is about learning a few basic skills and how to be part of a team.  It is silly to wait to learn something until you can do it "right".  No one can do anything right at first.  Your ds would do very well in Upward sports.  Many local churches have Upward programs.  The season here runs from December to early March, with sign ups at the end of October.  

 

Basketball is the sport we have chosen because of our amazing height.   :D  Dh plays, too. It is fast-paced and works on the skills my ds needs.

Thank you, thank you, thank you!  You're right, it would make FABULOUS sense here for those reasons, wow.  The things I didn't even know to ask...  :)

 

[wapiti]

I had never heard of this!  So what is Miller's book?

 

http://www.amazon.com/Sensational-Kids-Children-Processing-Disorder/dp/039916782X/ref=sr_1_1?ie=UTF8&qid=1431542900&sr=8-1&keywords=miller+spd  check the library for older versions

 

see also http://www.spdfoundation.net

 

 

[Seeking Squirrels]

We had different issues to address, but OT has helped DD a lot. She just finished her 12th session and we're now going to (try to) break until fall. She still has some things to work on, but we were able to address some things and also just learn basic tools to help her. Definite improvement in behavior/emotional regulation. She can now focus for more than 30 seconds, so long as we've been addressing sensory needs. We think she experienced being dizzy for the first time for just a moment. She is holding her pencil correctly over half of the time (with cues). And she has better arm strength than before we started.

[PeterPan]

Our OT did the Ready Bodies, Learning Minds curriculum with ds.  It did help with his emotional regulation because the physical activities helped arrange his neural synapses to be more stable or something.  I can't say that I completely understand how.  My ds was not terribly rigid and unflexible with anything except for food before he hit adolescence.  Now he is more rigid and inflexible...or the difference between him and his NT same-age peers is more pronounced due to them maturing in this area and him not.  He had many fewer emotional meltdowns.  These would happen several times a week during math, and we sometimes lost the rest of the day or half a day to the emotional dysregulation.  He is still helped by physical activity.  I suspect that all of us are, that if we all started the day with a brisk walk or some jumping jacks that our minds would function better.  However, with my ds the physical exercises were essential to his learning process because they allowed him to manage a higher level of frustration without melting down in a puddle of tears.

That finally makes sense!  You know me.  I can know words but I might not get what they MEAN, like what it LOOKS like and how to connect what I see happening to those words.  That's part of the trick in asking for help and supervising his care, is we have to know the words for what we're seeing so we can advocate and make it happen, sigh.  Anyways, thanks, that makes sense.  And you know I think I looked at that ages ago when you must have mentioned it.  I think it went to the theoretical good ideas pile, oops.  But now part of what I'm trying to accomplish makes sense, hmm.  And it's really weird, but I LIKE doing this stuff with him.  Maybe because it's just fun and because it's a happy, good part of our day, as opposed to cracking the whip and saying now read this stuff and now slog, sigh.

 

Or else I'm just playful and always looking for excuses to play.  :D

[PeterPan]

http://www.amazon.com/Sensational-Kids-Children-Processing-Disorder/dp/039916782X/ref=sr_1_1?ie=UTF8&qid=1431542900&sr=8-1&keywords=miller+spd  check the library for older versions

 

see also http://www.spdfoundation.net

Thanks!  Does it strike you how many of those kids are *not* looking at the camera there?  ;)  With my ds, he usually isn't looking, and if he knows you're there he'll bolt.  Anyways, that's a total aside.  

[texasmama]

That finally makes sense!  You know me.  I can know words but I might not get what they MEAN, like what it LOOKS like and how to connect what I see happening to those words.  That's part of the trick in asking for help and supervising his care, is we have to know the words for what we're seeing so we can advocate and make it happen, sigh.  Anyways, thanks, that makes sense.  And you know I think I looked at that ages ago when you must have mentioned it.  I think it went to the theoretical good ideas pile, oops.  But now part of what I'm trying to accomplish makes sense, hmm.  And it's really weird, but I LIKE doing this stuff with him.  Maybe because it's just fun and because it's a happy, good part of our day, as opposed to cracking the whip and saying now read this stuff and now slog, sigh.

 

Or else I'm just playful and always looking for excuses to play.   :D

lol  I am the same.  I often read what people are saying on the board, and I think, "I know that means something, and it sounds really smart, but I have no idea what it is.  I think it needs translation."  So yes, I get it.

 

That curriculum is very hands on, interactive, and fun.  I think you would make a great OT, OhE.  :D

[Lecka]

Learning about sensory needs, and talking to people about sensory needs, has been really, really helpful.  But as far as OT itself?  It has not been something where I am seeing any obvious benefit.  I think it is beneficial, but it is not really a "wow" thing for my son.  I have been disappointed before when I hoped/expected he would have results I know other people have had with OT.  I know people who have them!  It is real!  I just did not have them with my son like they did.  

 

The good news is that sensory needs are really well-accepted in my town now, everyone who works with my son is aware of sensory needs and planning things where they are building in sensory activities or whatever.  

 

I am very happy with the school OT he has right now.  From talking to her, she thinks my son benefits, too.  But, from what she says, my son doesn't have some certain weaknesses that are ones where she is really helpful.  He is not over-sensitive to anything, and his motor planning is good.  So he is just not going to have the same benefit as kids where those are the things that will really help them.   

 

But I do think it is beneficial, just in a more low-key way.  He is making improvement in his goals.  

 

If we were not having sensory strategies for him anyway, with everybody, already ----- I would probably appreciate it a lot more.  But it is such an autism thing, there are not really people in my town who don't believe in sensory or don't do anything for it.  People do not all handle it in just the same ways, but everyone is aware and has got a strategy (or set of strategies).  

 

I have been to two lectures/presentations about OT and sensory needs and OT and regulation (and stuff), and they were really good presentations, and helpful to me, and I had a good chance to have questions answered.  

 

But I literally talk to people, and walk away having been told they think that if I give him time to play outside, that I am doing what they think is best for him.  (And if I am just generally aware of it and stuff.)  They will say "he seems to seek out what he needs" in a good way.  (Or he lets me know what he needs, or I see what he needs.)  We do have a Body Sock and some things like that, but I consider it all to be pretty low-key.  It is just something we do.    

 

But that is just him.  

 

I am very happy for the kids who do see the much greater (or more obvious) benefit.  It is a good deal!  

 

Right now my son has school OT and he has a sensory folder that he does throughout the day (there are 3 categories of things, either calming or activating or something else).  I am happy with how that is going.  I am not choosing to have him in private OT right now, though I do have him on a waiting list at a certain place.  But I am not sure I will have him go.  I am not sure it is the most beneficial thing for him right now, compared to other options I have.  

 

 

 

 

[PeterPan]

  I think you would make a great OT, OhE.   :D

Hmm, I had never thought of that!  :)

[PeterPan]

Lecka, I think it would be interesting for you to get the private OT, if your insurance will pay for it.  That will let you see if there's a difference.  I definitely have heard some astounding stories.  Some seem much more oriented toward goals rather than just cash cow continual process.  When I was younger I bought into ideals, but now I'm a little more comfortable with goals and progress.  So we'll see.

 

Your folder of sensory seems like a good plan, hmm.

[Storygirl]

Elizabeth, I am too tired to offer much of value, but I'll say that my son had OT once a week for an hour from July to February (8 months), and the OT was disappointed that we were moving, as she felt she had a lot more work to do with him. Our OT was very big on presenting me with ideas and teaching me a few things to do with him, but she never gave us a list of goals that she was working toward. She worked on a variety of things each week, and DS loved it. I became convinced that OT was going to help him with a lot of issues. Over his last sessions, she reran a few screening things that she did with him at the very beginning, and there were some improvements. Actually, I could tell that myself as I filled out the parent evaluation forms. There were more times that I would mark "sometimes" instead of "always," if you know what I mean. But I didn't really notice a magical obvious, practical improvement. Part of that was on me, though, because with juggling all that I had going on last year,  I just couldn't manage to do all of the things at home that she suggested, and I know that would have made a difference.

 

I'm still convinced that he needs OT, and we're going to find a provider here in our new town eventually. But I'm going to ask the new OT for some definite goals and things to work toward. Like tying his shoelaces, for example. He needs to work on that, and it is a measurable goal. Or working on his handwriting issues. Our old OT just was more loosy goosy. Her approach was to address what she considered basic deficits (vestibular things, propriception, etc) and that it would show improvements across the board instead of to work on specific skills methodically. She was passionate for sure. I think I want a somewhat more practical approach this time around, though. In the meantime, I need to break out all of the lists of things she gave me to do with him and put them into practice here at home. Especially since with his broken heel, he will  likely be out of gymnastics for awhile (we have our appt with the orthopedist tomorrow, so we'll know for sure then).

[fdrinca]

Our 4.5 year old was in OT weekly for almost 10 months for sensory issues. It's hard for me to disentangle what was progress and what he may have gained having aged almost a year. 

 

I wasn't impressed. I continued with the therapy because we didn't know what else to do. His lack of awareness of his surroundings was dangerous and frustrating.

 

A few months ago, his dx changed slightly, and we've been working an ABA program. Again, it could be a change in providers and his older age, but we have found his approach much more effective, especially with regard to stimming, peer interactions, response to changes in routine, and self-care.

[Tiramisu]

Elizabeth, but we had a brief and ineffective stint with OT years ago. It was just long enough to max out our insurance. Dd loved it but there were no results. I very much agree with Lecka's take on it. You learn a lot about managing things but it doesn't change things. I might try it again but right now we're into play therapy and martial arts, and I will try gymnastics again, mostly because it makes dd very happy. I do think gymnastics, martial arts, and sports have been more helpful and are cheaper than OT.

 

For more long lasting effects, I'd vote for putting money into neuro-developmental therapy. I know Elizabeth is VERY skeptical about it and I am/was, too. I haven't done it. But for several friends' families, there were very positive, clear results. Years later, they all talk about it how helpful it was and then start taking their younger kids at great expense. I have never heard people so enthusiastic about OT, even years later.

[texasmama]

As you can see by this thread, kids' results from OT are so varied.  I never knew how much OT held my son together until he had a long break and fell apart.  Then, he had another break and fell apart again.  So no more breaks for us!  But his SPD was severe, and his therapist was VERY astute with SPD.  Most OTs in the school system don't love working with sensory issues, but our OT did.

 

A friend did CogMed for her ASD/ADHD kid and noted no long-term benefits at all, even though he made improvements in scores per the program.  It may really help some kids, but it did nothing for her kid to improve his functioning or to reduce the amount of meds he needed to function.  It is an expensive gamble.  But since kids are so individual, I think everything is an expensive gamble for some people.

 

Tiramisu, you have now heard someone rave about OT results years later.  :)

[LizzyBee]

Ok, I'm spinning this off, because it really is its own topic.  I was under the *assumption* that getting my ds in for OT would be super amazing for his sensory issues.  Thing is, gymnastics is super amazing, chilling out a lot of the crashing.  Shhh, but I wasn't really impressed with his first OT eval (private).  She just didn't inspire me at all as having a plan that was going to make a radical change.

 

I'm using the term SPD here, because that's how the ps seems to parse it out, separating out each little thing.  So I'm thinking specifically of the sensory here and stimming and repetitive behaviors.  For instance, flapping and flicking, is anything going to alter that besides personal choice and awareness with time?  He's hyposensitive, big time hyposensitive.  Is anything ACTUALLY going to alter this? He injures himself and is not particularly self-aware (hunger, need to potty, etc.).  Can OT affect this?

 

See, I'm trying to figure out how I know what my goals should be for the OT and how I know if I'm adequately treating it.  I think according to some OTs he should become their perpetual cash cow, coming for sessions while they do all these fun things for midline, etc. with him.  And a year of that and thousands of dollars later, what will I have accomplished?  Then I talk with someone else, who also went to a good OT, and that dc had 12 weeks, bam done, and that child made quantifiable progress.

 

Any tips on what I'm looking for or trying to make happen?  Time frame to expect?  

 

The first OT my dd went to was pretty standard and within a year, there was nothing more they could do for her. She needed more and fortunately, I found a place that is like normal OT on steroids. The sensory room has a thing made out of sheets where she had to climb up out of one and down into the next. She hated it the first time, but after the second time she would have spent the entire hour in that course. There was a spinning thing that the OT used to try to get dd dizzy, to work on the vestibular system. They would do Interactive Metronome for 10 minutes and then go to the sensory room to USE those new brain pathways being made. When dd started IM, she was like the worst patient they'd ever evaluated, so she could only tolerate using it for a short time at first. They worked on balance, core strength, fine motor skills in her hands/fingers. They gave us good suggestions for things to do at home with her. We also did the Therapeutic Listening Program and we did brushing for a short time. She spent two years there and it was good for her. But… you mentioned gymnastics. My dd does Irish step dance and it is incredible for her. She's a sensory seeker in most areas other than taste and food textures, so the stamping in ID is awesome for her. You should see her face in action shots when she's up in the air - she's in heaven. She also has dyslexia, APD, and ADHD, so ID is good for her for many reasons. 

 

I just skimmed a few other responses and people mentioned management vs change. FWIW, I think dd will always need a high degree of physical exercise and activity to manage her deficits. There have definitely been changes for the better, but there are also still ongoing needs.

[WoolC]

I've been following this thread with interest and thought I would add in our experience as well.  DS did 9 months of OT(as much as our insurance would cover) once a week at 3 years old for SPD.  He did therapeutic listening, worked on fine motor skills and a bit of swinging.  If I could do it over, I would have been pressing the OT for more practical steps we could take at home, asking her about a sensory diet tailored to my son, etc.  She really wasn't very forthcoming on what she was working on and I blindly trusted her expertise.  After our experience, I had written off OT but now we are learning that my son actually has ASD and I'm looking back into it.  If we do pursue it I will be far more particular about the OT we use and more proactive in getting valuable information from the therapist. 

We are also looking to start gymnastics this fall so it might be that we don't feel the need after getting started on that and the other therapies we'll be starting soon.

[PeterPan]

Texas, was your friend's dc on the meds while doing the Cogmed?  I've been wondering how that affects things...

[PeterPan]

LizzyB, thanks for explaining all that.  I have this sort of small (modern world) problem that the OT that our SLP brought into her practice is nice but doesn't have ANY of that stuff.  She gave us a generous eval, but I just don't feel like we'll accomplish much (beyond BalavisX) working with her.  What you're describing is what we should be getting, so I need to figure out where I'd get that.  You're right, he's INTENSELY physical, intensely.  Crashing, banging, hitting, biting.  All in one day or hour.  Sigh.  I'll look through the provider lists and see what my options are.

[PeterPan]

I've been following this thread with interest and thought I would add in our experience as well.  DS did 9 months of OT(as much as our insurance would cover) once a week at 3 years old for SPD.  He did therapeutic listening, worked on fine motor skills and a bit of swinging.  If I could do it over, I would have been pressing the OT for more practical steps we could take at home, asking her about a sensory diet tailored to my son, etc.  She really wasn't very forthcoming on what she was working on and I blindly trusted her expertise.  After our experience, I had written off OT but now we are learning that my son actually has ASD and I'm looking back into it.  If we do pursue it I will be far more particular about the OT we use and more proactive in getting valuable information from the therapist. 

We are also looking to start gymnastics this fall so it might be that we don't feel the need after getting started on that and the other therapies we'll be starting soon.

Nope, my ds still needs *something* for the SPD, even with gymnastics 3 days a week for 4 hours a week and 2-3 swim lessons a week.  It helps, but it's not a done process.  You miss the gymnastics a week, and he's unlivably physical.  And his meltdowns are physical.  Sigh.  And yes, I'm with you.  We did the vague OT with dd and now I want something where the person will teach me how to carry something into the home and give me more tools.  

[texasmama]

Texas, was your friend's dc on the meds while doing the Cogmed?  I've been wondering how that affects things...

 

Yes, I believe so, It has been a few years, though, so I would have to ask her.

[PeterPan]

Yes, I believe so, It has been a few years, though, so I would have to ask her.

Interesting.  We've just been trying to figure out a game plan.  Thanks!

[Terabith]

We had good success with OT with my oldest, but she was a toddler.  I took Catherine for an evaluation, and she gave me some good tips, but what she suggested was a routine of gymnastics, swimming, horseback riding, and martial arts.  She said ice skating and rock climbing would be good, too, if we could manage it.  I didn't manage to get all those activities going, but she was pretty explicit in how each of them benefits sensory integration and motor skills but with the benefit of it being a pro-social, normative activity rather than a "therapy," which was a good point, I thought.

[5nomads]

Sensory Processing Challenges: Effective Clinical Work with Kids and Teens by Lindsey Biel was recommended to me. It seems huge and intimidating but I am hoping to learn new info and strategies in order to help my DS9 who most likely has SPD (neuropsych recommended OT eval because of his sensory issues). I saw that Brock and Fernette Eide said "This is the one book on this topic that all of our colleagues in the child care profession must read." If anyone else has read this book I'd love to hear reviews and if you found exercises or things to implement at home that have actually helped. I don't want us to turn into an OT cash cow and have found this thread fascinating and insightful. So encouraging to see that OT for SPD has been successful for some and there are things I can be doing at home to help. 

 

[Lecka]

http://www.sensationalbrain.com/  They use more than one thing, but this sensational brain is a lot of my son's sensory folder.  

 

They have the stop light and the spinner that can move from green to yellow to red.  He has a choice of activities (like board maker or visual schedule little velcro tiles/icons) depending on whether he needs to "activate" or "calm down" or whatever. 

 

I do not do it so formally at home, but I like how they do it at school.  

 

I have a good impression.  

 

I have some print-outs with two more websites, that have to do with the sensory folders, I am going to try to find them.

 

Edit:  this model is more about increasing regulation in a bit of a long-term way, and it is also about just doing things throughout the day.  It is not a model where you do something short-term and then there is a permanent increase.  

 

I believe this is the realistic model for my son.  I don't believe this needs to be the model for everyone, but I think it is what is appropriate for my son.

 

I have an older son who made real progress in OT and then exited OT.  It is a different situation.  

 

But this model is also not a "OT cash cow" model.  The OTs want it to be something that parents learn about it, and then parents do it.  They do not see it as "well, we will do it for an hour once or twice a week."  It is not that kind of thing.  

 

My older son had the model where he did intense work for an hour a week, I did some stuff with him during the week for practice, and he made progress in his goals.  

 

It just depends.  

 

My older son has had two OTs (one school and one private).  My younger son has had a different 3 OTs (one at pre-school, I had him in private OT a while, and now one at school).  It is not the same experience, different ones have a different focus.  

 

They are also going by the traits of the child.  

 

I do not like too much "one size fits all" OT.  I like it when they are doing different things with different kids, and the goals and models make sense.  

 

But either way -- it helps to know which model they are operating under, what their goals are, etc.  

 

I do not like it when it seems like they have one intervention that is their favorite intervention, and they just do it with everybody.  Or when it really seems like stuff I could be doing, but they don't explain much.  

 

But the OTs who want the parents to do daily sensory activities are very willing to share this information with parents, they believe it is helpful and they want to help children.  I do find it helpful.  

 

Since we also do ABA, there are times when one behavior is going to be seen by an OT, possibly, as "sensory seeking" and neurologically based.  By an ABA therapist, it may be seen as attention-seeking or escape (or access) behavior.  My son does not have access behavior very often (aka acting wild in hopes of being given the iPad, b/c he is given the iPad to calm down after being wild ----- if it was a behavior and not a sensory thing).  

 

It is up to me, honestly, to decide if I find the sensory explanation or the behavior explanation helpful at any moment in time.  I am very free to know my son and what he is like, and sometimes think he is having a sensory moment, and sometimes think it is more of a behavior moment.  It is nobody else's business to decide that for me.  

 

But I think that a lot of times ---- it is extremely helpful for me to view things in a sensory way, and address them in a sensory way.  That concept is very helpful.  That is what is good.  That is not quite the same as saying "spending an hour at therapy" is amazing.  I think the activities at therapy are good, but in a slow, developmental way.  That is just his situation.  He does not have the "quick, targeted progress" situation because that is not how he was born or how he is right now at his current age.  A year from now he could be in a place where he will be in a "quick, targeted progress" situation -- I think it is possible.  

 

There are a lot of times when the behavioral explanation makes more sense than the sensory explanation for my son.  

 

There are kids where it is always or 95% sensory, they do not have the same behavioral explanations.  That is just not the kid I have.  I have a personal opinion that that is the case a lot more with kids who are sensory defensive, and trying to avoid things.  Then it does not make a lot of sense to treat that in a behavioral way, and this is where parents of these kids will prefer OT and find ABA to be not-so-effective.  

 

But sometimes I can have a difference of opinion with people who think everything is about sensory, b/c it is for their kids, so they will wonder if I am doing things wrong with my son.  But usually if I talk to them they can see why I am doing things in a way that make sense.  

 

 

[Tiramisu]

...

 

It is up to me, honestly, to decide if I find the sensory explanation or the behavior explanation helpful at any moment in time.  I am very free to know my son and what he is like, and sometimes think he is having a sensory moment, and sometimes think it is more of a behavior moment.  It is nobody else's business to decide that for me.  

 

But I think that a lot of times ---- it is extremely helpful for me to view things in a sensory way, and address them in a sensory way.  That concept is very helpful.  That is what is good.  That is not quite the same as saying "spending an hour at therapy" is amazing.  I think the activities at therapy are good, but in a slow, developmental way.  That is just his situation.  He does not have the "quick, targeted progress" situation because that is not how he was born or how he is right now at his current age.  A year from now he could be in a place where he will be in a "quick, targeted progress" situation -- I think it is possible.  

 

There are a lot of times when the behavioral explanation makes more sense than the sensory explanation for my son.  

 

There are kids where it is always or 95% sensory, they do not have the same behavioral explanations.  That is just not the kid I have.  I have a personal opinion that that is the case a lot more with kids who are sensory defensive, and trying to avoid things.  Then it does not make a lot of sense to treat that in a behavioral way, and this is where parents of these kids will prefer OT and find ABA to be not-so-effective.  

 

But sometimes I can have a difference of opinion with people who think everything is about sensory, b/c it is for their kids, so they will wonder if I am doing things wrong with my son.  But usually if I talk to them they can see why I am doing things in a way that make sense.  

 

 

This is right on. Thanks for sharing the ideas.

 

It is so hard to sort out the sensory and behavioral stuff. My top sensory avoider hasn't ever "needed" behavioral explanations. But my sensory seeker is much more complicated behaviorally. The toughest one to figure out is the one who has a lot of both.

 

 

[PeterPan]

Sensory Processing Challenges: Effective Clinical Work with Kids and Teens by Lindsey Biel was recommended to me. It seems huge and intimidating but I am hoping to learn new info and strategies in order to help my DS9 who most likely has SPD (neuropsych recommended OT eval because of his sensory issues). I saw that Brock and Fernette Eide said "This is the one book on this topic that all of our colleagues in the child care profession must read." If anyone else has read this book I'd love to hear reviews and if you found exercises or things to implement at home that have actually helped. I don't want us to turn into an OT cash cow and have found this thread fascinating and insightful. So encouraging to see that OT for SPD has been successful for some and there are things I can be doing at home to help. 

Hmm, the kindle version is only $17!  If somebody buys it, be sure to give us the scoop!  :)

[PeterPan]

Lecka, that made a lot of sense somehow.  And you're right, that's what blew my mind, to read a review on amazon pointing out that all these approaches are looking at the same thing from different angles (it's behavior, it's sensory, it's lack of attachment and non-verbal, it's...).  And yes, that's what dd and I were chatting today, that maybe with ds' mix of sensory-seeking, maybe that's the kind of thing that isn't insta-fix or going away soon.  I don't know.  I've been sweating over that for days, lol, how to know if the OT I consider is giving me a realistic timeframe or whether it's reflecting less tools in her toolbox.  And you know, I think you've also put into words something that I hadn't quite put my finger on.  His sensory isn't the same as dd's sensory.  Ds needs somebody who has experience with that intense mixture of sensory AND behavior and understands how they interplay.

 

For now I'm just going through the provider list and looking at all the options.  Sigh.  It's a good problem I guess, lol, finally having funding and being to the point of picking providers.  :)

[PeterPan]

Lecka, I'm back.  Maybe that $16 ebook by Biel will explain this better, but I'm watching one of the BrainWorks videos and I'm seeing her use sensory inputs differently than I thought.  I thought of them in terms of modulating state (out of control to calm) or to FIX self-regulation permanently.  It sounds like she's saying to use sensory for TRANSITIONS.  That's a new thought for me and I'm trying to wrap my brain around this.  She says it like oh yeah, of course.  And, in a weird way, that's what we were doing with all the Focus Moves and BalavisX, because we'd come off breakfast or off lunch/quiet time, do the FM/BVX, and then do our LIPS.  Worked great.  But there I was using it to warm up his brain and improve focus.  

 

It almost seems like she's using the sensory input as a behavioral tool.  Ds has a morning routine right now where he watches Curious George or Daniel Tiger each morning.  This is a serious deal, and I like to think there's some benefit too (social learning, how children speak, imaginative play, etc.).  But to just get him off ABRUPTLY and say oh yeah, now we go do such and such, that's a challenge.  I usually give him a heads-up for the transition.  I've got new stuff for a brain warm-up.  I'm just surprised at this idea of using sensory to transition between things.  So math, sensory, writing, sensory, Barton, sensory, and so on?  Is that the gig?  

 

I don't know.  Don't chew on me too hard here, but I think our kids also need to make CHOICES to modulate behavior and not just go along with a flow passively because it's so entertaining.  Even saying sensory to repair and get back to a peaceful state or sensory because your goal is to get in 1 hour a day in lots of little chunks is really different from saying I smooth transitions with sensory.  I'm just not sure about the thought process implications of that.  And doesn't it seem weird, in a sense, given the freedom of homeschooling?  Even at the local autism charter, I seem to recall thinking they had a schedule and the freedom to jump off and go do sensory for a while.  So the kids knew their sensory options and would take a break and go do something to self-regulate, then come back.  It was nurturing self-monitoring rather than being totally passive the whole time.  A school teacher in a mainstreamed class might not want that with the kid just walking off for a few minutes, but in a home setting it makes sense.  It seems arbitrary to say you're picking what the sensory has to be after math, at least in a home setting.

 

I think I have the components for a sensory diet but not the thought process or intentionality of it.  Guess that's what I'm realizing I haven't thought through.  I thought it was more just something you did to get them back to green zone if they were discombobulated.  And I must be a little fuzzy-headed, because I'm not sure the BrainWorks colors were lining up with the Zones of Regs.  It seemed a little complex to use the folder, like you had to figure yourself out and then do the opposite and jiggle your leg and...

[PeterPan]

I'm realizing she has some webinars that might cut to the chase.  Or maybe they overlap with her book?  I have to see if her book is in my library bin, hmm.  

 

http://www.sensationalbrain.com/shop/sensory-diets-at-home-little-or-no-equipment-required/

 

This talk seems to be focused on sensory at school.  She breaks sensory down into breaks, routines, and modifications, so I'm not crazy thinking I'm seeing differences there.  http://www.sensationalbrain.com/shop/sensory-diets-at-school-little-or-no-equipment-required-2/

 

Don't know if this overlaps, but it might be interesting.  http://www.sensationalbrain.com/shop/creating-a-sensory-friendly-classroom/

 

And her Blue Guy story seems cute  http://www.sensationalbrain.com/shop/blue-guy-explains-sensory-craving/

 

 

 

[Lecka]

My son is mostly sensory under-responsive (or under-aroused) and sensory seeking.  However they put it.  

 

Under-responsive and sensory seeking often go together.  

 

My son does not really have much in the way of sensory avoidant.  There are times that he does not do well in a chaotic environment, and there are times he does not do well with a lot of visual stimulation.  

 

I have heard that mixed under-responsive and over-responsive is more difficult.  

 

Here is the interplay between the sensory and behavior models:  okay, so, let's say that my son acts wild and we decide he needs a calming activity.  That can make sense, it can be for sensory.  Everything is good.  But then -- my son "learns" (in behavioral terms) that if he wants to do the calming activity, the way he gets it, is by acting wild.  He does not learn to identify "hey, I want that activity, so I should ask for it."  B/c he is not "taught" to recognize that and ask for it.  He is taught that when he acts wild, he will get attention and an enjoyable calming activity.  

 

So in behavior terms -- this is seen as a danger of "shaping" frantic behavior as a way for the child to get attention and a calming activity.  

 

But -- how do you say, "well, this time he is not *really* having a sensory regulation issue, this time he is *really* just trying to get attention and an activity in this maladaptive way."  

 

And it is like -- you just have an idea.  Sometimes I just know -- "he didn't sleep well last night."  "He is getting hungry."  "I think he might be catching Sissy's cold."  Etc.  Or I am pretty sure it is sensory, really sensory.  

 

But sometimes I think it is behavioral.  

 

So since he does sensory in a behavior context ----- it means a few things.  We are careful to use sensory as an "antecedent" as much as possible.  This means we do it *before* he is wound up, and not *as a response to him being wound up.* (Aka not as a "consequence.)  So the sensory folder is meant to be preventive or used at a first sign of trouble, while my son is still using his good behavior and able to use his words and all those good things.  

 

The other thing it means, is that we have to be careful about "not rewarding undesirable behavior."  He might experience a sensory technique that way.  If he likes it and it is what happens after he has been acting a certain way -- he might think that if he acts that certain way, then he will get to do that cool sensory thing he likes so much.  

 

Also -- he might be "calmed down" too much vs. "learning to calm himself down."  This is not a pleasant thing and I don't think it should be too hard on a child.  But at the same time -- my son needs to do what he can to regulate himself instead of it being someone else's job to regulate him.  But he needs to be majorly set up for success.  

 

In my own personal experience in my little town..... it is ABA providers (and surely not everyone  -- but the ones I have worked with) and special ed teachers who are really good at the intersection of sensory and behavior.  The OTs do not have a lot of knowledge/experience with ABA-style behavior.  

 

The thing is -- an OT does not need ABA-style behavior with every client.  But an ABA provider needs sensory stuff for every client, b/c every client is going to have some kind of sensory need.  

 

Our provider does use sensory-friendly games as social rewards and in pairing.  She does a leg squeeze thing that my son adores.  She does deep-pressure hugs -- but she does these as a social reinforcer.  She does not do them with this "now it is time for the deep-pressure hug part of therapy, I am going to do it in this serious way."  She does it like -- "now we are playing a game where I catch you and give you a big squeeze."  She used to hold him and have him say "spin" and then she would spin around with him -- it was helping him learn to ask for things, and also meeting a sensory need for him, and also teaching him that it is fun to do things with another person.  

 

So she (ABA therapist) is using sensory as a tool.  

 

This really bothers some people who think it should not be a tool, it should just be something kids need, they need to have their sensory needs met, it should not be conditional in any way.  

 

So there are a lot of ways I am comfortable with it being a tool.  There are other times when I do not find it acceptable, my son's sensory needs will be met.  That is my call.  The same as it is my call to say if he is tired and should be cut slack, or if he is not tired, and shouldn't be cut slack, but held to a higher standard.  Now -- I need to listen to other people and accept their advice and guidance.  But it is my call.  Even if someone else is with my child, it is my business, and they will need to listen to me if I say "he didn't sleep well last night, so back off."  Or, if I say, "he is playing you, you need to expect a little more from him, and he will realize he can't get away with some stuff with you," that needs to be listened to, also.  But in reality that is where I have changed a provider.  It is easier for me to say "take it down a notch," than to say "pick it up a notch."  I do not feel comfortable in that role, personally.  It is easier for me to be the non-enforcer who says "go easier."  I don't want to be the enforcer, I do not care for it.  

 

I could see that just depending on the individuals involved, though.  That is just what I have seen in my town.

 

This is also where there is an idea of "total demands."  A demand can be any kind of demand.  Like -- environmental (it is loud or bright or very windy, if any of those things are distracting), social (it is hard to follow the social things going on), sensory (sensory needs not met), behavior (the standards for behavior are difficult to meet), and etc. There is a total demand that are a composite of all the demands that are present.  I have read a really good blog post about this, but I can't find it now.  It is really good, though.   

[Lecka]

Okay, responding.

 

There are a few issues.  First, know that my son is not at a level to do more language-based programs (like Zones of Regulation).  That is some context for some things.  Of course they want kids to take as much ownership as possible.  

 

Two, it depends what is going on, just how they use it.  

 

Three, well, my son is in a program where they are going to combine sensory and behavior strategies to some degree.  So there is the visual schedule aspect, the choice board aspect, the "first, then" card aspect.  These are very "autism" strategies that are going to fit well in a resource room using autism strategies.  I don't think that detracts -- it is just a bit of context.  

 

Four, what they do NOT want to happen ---- child dislikes something, so child requests a sensory break to avoid doing the thing he doesn't want to do.  That is part of why the visual schedule can be used.  It gives the child a choice.  It can be used to let the sensory be a bit of a reward for first doing a less-desired task.  These are the usual autism strategies for using a choice board, using a visual schedule, going from a less-preferred activity to a more-preferred activity, etc.  

 

Five, really though ----- it assumes you know a child.  You know how long they can work before they need a break.  Can you do two activities and then need a sensory break?  Can you do three or five?  Can you usually do five, but only three if it is an off day?  These are all things where you just kind-of know the kid and how long they can do things, and what they like, and what is more difficult, and you take all that knowledge and bring it together.  

 

For a child who already has more self-awareness, etc, sure there are other ways to structure things and work on things.  I just do not know as much about them yet!  

 

There is also stuff like Zones of Regulation, which might be a better choice.  My son is not at that level yet, but just b/c he is not at that level yet, it doesn't mean he will never get to that level, or that one is better than the other.  

 

But I think it is good to know a little about options and what theory/model people are operating  under.... and then you see what the OT thinks is the right choice for your child's age and level.  

 

I truly am impressed with the sensory folders and how they are used, but 5 years from now do I think my son will still be using them the way he is now?  I doubt it.  They definitely want to transition him to where he is doing more and they are doing less (in helping him identify his emotions and stuff).  

 

But I don't think it is fair to hold against a program, that it may be used by kids who don't have all the foundational skills to use another program, that truly is more advanced in various ways.  

 

But if you are better off with Zones of Regulation as a primary thing -- then there it is.  I think it is getting at the sensory/behavior intersection, too.  

 

But I think it is helpful, too, to keep in mind ----- a lot of people like me will come to Zones of Regulation, not from scratch with no background.  We will come to it with years of other stuff under our belts, and I think it is helpful (or will be helpful).  Or I tell myself that!  

 

But  https://www.socialthinking.com/books-products/social-emotional-learning/a-5-could-make-me-lose-control-detail my son's school will be transitioning kids to this "1-5" thing (The Incredible 5-Point Scale).  I do not know *too* much about it.  Some kids start with it -- that is their starting level.  It is similar to Zones of Regulation, but it is older (and seemingly not so hip).  But it is what is used here for now.  I hear good things about it.    

 

So yes ---- this is not really meant to be permanent, in a way, it is meant to get more independent and with the child identifying their own emotional states and energy levels and stuff.  But keep in mind ---- these are considered very hard skills to learn and so it is not fair to just be like "why not just have the kid identify his own emotional state?"  Like -- of course that is idea, but it may not be realistic without time spent working on that skill.  And in the meantime -- kids need to be able to learn and stuff.  And there are a lot of teaching opportunities in talking about whether to put your spinner on red or yellow or green.  

 

But I also do not know as much about exactly how it is done.  I have more impressions.  My son has a visual schedule anyway where he is working towards something.... or, where he knows he does 3 things and then it is time for a sensory break because that is what is on his visual schedule.  But I think it is acting as a reward for him in a lot of ways, too.  But the teachers are smart -- they make things work both ways, if it makes sense to have a sensory break be a treat for the child that motivates him to do 3 things first, and if it is also good for the child's sensory needs.  

 

But my son does visual schedules anyway.  It is supposed to be a good autism thing for him!  It is one of those things, everybody locally thinks it is a good idea, in one way or another.  It is one of those popular things, kind-of regardless of what professional it is.  Everyone wants to get in to the visual schedules, b/c everyone thinks they are helpful for a lot of kids.  

[PeterPan]

The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders

 

I finally clicked to buy the VBA book you (Lecka) keep mentioning.  I'm realizing it might give me more insight into objectively sorting out behavior vs. sensory and noticing patterns to his behavior.  That's loaded up onto my ipad for some wonderful bedtime reading, haha.

 

I'm reading more of what you wrote.  It's just going to take me a bit to chew on it.  It looks like you're answering my question and that I was scratching the tip of an iceberg, oy.