OT for SPD

[PeterPan]

Hmm, so the point of the spinner is to begin to develop self-awareness?  Don't read too much into my pickiness.  Sometimes I have to get over myself.   ;)

 

Right now I have a large pocket chart on our wall and it runs our week.  He likes it for knowing the plan for each day.  It's not really quite as convenient for running our actual day and certainly doesn't have room to be more detailed with sensory, etc.  I've been thinking about creating some new structure for that and just haven't done it yet, sigh.  Do they reboot the folders during the day like at noon or something?  Or there are enough velcro slots on the front that they put the flow of the whole day?  

 

[PeterPan]

Lecka, I'm back.  So Zones is reactive and BrainWorks is pro-active?  And Zones is emotions and BrainWorks is speed (mental and physical)?  

 

This video kind of slows things down and explains better how it applies in the home.

 

 

So now I'm looking at 1-5 (Buron/Curtis).  https://www.socialthinking.com/books-products/social-emotional-learning/incredible-5-point-scale-the-detail It's emotions, not speed.  I think I hadn't quite figured out that we had both and that you should not necessarily use the one to solve the other (duh).  

 

Ok, now my brain is rabbit trailing a minute.  What things CAN we solve, bing bang, and what things can we NOT solve but have to create perpetual supports and accommodations for?  That should make sense.  So, for instance, at that video link, at the very end, she explains how to use a routine strip with pictures to integrate sensory activities into a mini routine to solve problem behaviors.  She cites clothing and dressing, and that's an issue for us.  So she's saying bring in some targeted sensory there as part of a routine so he puts on his clothes rather than trying to stay in pjs all day.  That also probably explains why some days he dresses and blows out the door and other days he is trying to stay in them all day.  On the non-analytical, typical parenting level, you WANT to just say it's bad parenting, bad character, laziness, disobedience, etc.  And yet this idea that you have a sensory instability nagging the child (ok some days, miserable others) and that he doesn't even have the words and metacognition to tell you the problem and it's coming out as behavior.  That's fascinating.  And hard to figure out, lol.  But fascinating.  But then, wouldn't it be more effective to solve the underlying problem, rather than saying on the days he can't bear to get dressed we do xyz?  I mean, it's good to have those tools, but I DON'T see BrainWorks trying to dig in on that further question of what can I do to get the system to heal and not even HAVE that instability, kwim?

 

So it's a good tool and I'm liking it.  But can I have MORE?  Can I know how to actually get that system stabilized so it's not happening in the first place?

 

 

[PeterPan]

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.

I agree, as I'm approaching this a 2nd time I'm asking lots of questions about what is meant to be reactive, what is proactive, and what is actually CURATIVE.  I think in my mind what I want is curative, but I'm not sure that's not necessarily what the OT even thinks they'll be able to make happen.  So we have this sort of muddle of expectations.  If I pay you thousands, you better cure it or make a change.  If you're just holding him together, I could have done all kinds of things that would hold him together.  And they're not gonna be straight and say yes, you'll pay thousands and  our whole big goal is so he doesn't bug the bijeebees out of you so much.  Sorry, that's not worth thousands because I can find more fun ways to do it.  I'd like some really concrete goals and for you to TELL me what you're going to accomplish.  

 

I've only interacted with one neurodevelopmentalist, and since it's a wide open, totally unregulated field, they could vary widely.  They're overlapping into many fields that a variety of licensed, certified practitioners will do.  They're doing some stuff for VT (like a dev. optom), some stuff for body works, sensory, and retained primitive reflexes (like an OT), some stuff for cognitive (working memory, etc., like a psych).  So OF COURSE doing some stuff is going to help some people.  But if they give you bad advice, mis-assess your situation, and divert your time and funds from getting the evals to work on deeper problems, THAT is a problem.  But I agree with the premise that lack of integration is a huge issue in current care, that many of these things are NOT rocket science, that many parents can pick up and do these books and programs too if someone will just teach us.  

 

So yes, when I took my dd to the neurodevelopmentalist at the convention and they said you don't need VT, just crawl, that PROBABLY was a breach of good ethics and practice on their part and it was most certainly bad advice.  And had I bought one of their kits and followed their advice, I would have had less funds to get the VT she actually needed.  And they didn't know enough to know they were giving advice that was not adequate to the situation.  Licensed practitioners have enough education to know what they SHOULDN'T say just as much as what they should and when to REFER OFF.  

 

But of course they're going to help someone.  I think the problem with ALL these practitioners is knowing how to quantify if you're making adequate progress.  I do a lot of whining about dd's OT, but in reality we learned a TON in that process.  She spent hours and hours with us explaining dd's sensory symptoms and how they were affecting her life and empowering dd to control her sensory situation and not be at the whim of it.  It was a pivotal point for us.  But she was frequently late, unprepared, and just hairbrained.  I think she's now out of therapy entirely due to health reasons or something.  I'm not sure they're all so hairbrained, lol.  I've talked with practices that are much better organized.  I think we have to go in knowing what we're wanting to accomplish and being able then to establish if we're accomplishing it or not.  When we started OT with dd, we knew NOTHING about sensory.  We went in for hand pain and came out being told she was low tone, ADHD, had these sensory issues, etc. etc.  It was all true, but we were blindsided.  And once you're in that moment, you're like sure, do whatever you think best.  But then in hindsite you realize that maybe a blank check approach to therapy doesn't answer questions like what my goals are, how I know if I'm accomplishing them, and whether there were other ways to accomplish them.  It doesn't allow you to slow down and get introspective about the even harder question of whether I'm doing this to be preventative or CURATIVE.  They're two different things.  As parents we want curative.  We want to do EVERYTHING we can to "fix" our kids.  But that OT isn't going to answer whether it can be FIXED or whether they're giving you ways to hold it together.  And even if they did, you can't be sure that their "oh, it can't be fixed!" answer actually would be the same from EVERY OT.  There might be another OT out there who HAS figured out a way to FIX this.  So you have sort of this semantics gap, and it's really not in their interest to explain what's really going to happen.  It's really not in their interest to say they can do therapy and give you more tools but it's not really going away and that someone else up the road could make it go away.  That's our problem to sort out what the truth in all that is.

[texasmama]

OhE, I think at the stage/age of your ds, no professional (in any discipline) can predict with complete accuracy which interventions will be curative and which will help for a time but then regression will happen when they are removed, or which issues normal development will improve with no interventions.  The best practitioners take their best guess at it and they tell you it is their best guess.

 

For OT to hold steady with the improvements and for my son not to have regression, we had to do it consistently for YEARS.  Like close to ten years.  I think that maybe if we had skipped the early years and waited, we may have gotten the same results, and I am an early intervention advocate.  But some things are incurable.  My son will never be NT no matter how many professionals intervene at great cost in time and money and effort for my son.  He turns 15 this year, so I know this and have accepted it.  I did not accept it when he was 7.    

 

Because our OT and ST was free for all of those years (with the exception of a summer when I took him to private ST), cost was not a factor.  But my poor son was poked and prodded and made to do all sorts of difficult and unpleasant things.  These were not cruel and unusual interventions but because of his severe sensory issues, they were unpleasant and difficult.  And God love him, he cooperated his very best with every single one of these for years.  And now I see what we are left with, which is some improvements.  And him having the OT to keep his brain straightened out so he could learn and not emotionally melt down for the middle years of the treatment was of great value to us.  I remember him being 8-9 and sitting on the couch crying over math.  And I sat there and cried, too.  Everything was so hard for him.  Everything was a Herculean effort.  That is when I took him back for an eval, and he was reenrolled in ST and OT after a break of a year.  

 

It has been a process for me to accept my son's limitations.  A very long process.  There are things that I could have done that I did not do.  No one can do everything.  Overall, when I take an objective look at the long road, I see that we did more than many and less than some.  I always did what I thought best and could afford and had emotional energy and practical time for given what was going on in the rest of my life at the time.

 

Each one of our children is so very different, and what helps one will give no benefit to another.  They are complex little folks with complex issues.  As a person of faith, I have done my best and given the rest to God.  My son is welcome to live with us as long as he wants/needs.  I will help him in any way I can until I am no longer here.  I believe it will be enough.  I believe he will have a meaningful life and a good future.  I have hope for him.  I am invested in supporting him and in his success.

 

I don't know how much help that is, and I admire your search for answers.  You are a stronger character than I in that department.  I also believe that no mistakes were made in the design of our kids and that I got the kid I needed and he got the parent he needed.  Same with your son and you.  

 

Rock on, awesome mama.

[Lecka]

I accept that I do a lot that is on a maintenance or management model.  

 

That does not mean there is no plan to move toward greater self-management and independence over time.

 

But to some extent -- it is a model where the child takes over the maintenance and management.  It is not one where the need for maintenance and management totally disappears.  

 

I hear a lot that there are changes with maturity, too, so that the actual problems decrease.  I think there is slow, incremental progress, too.  

 

Keep in mind -- my son is seeing his 3rd OT.  He has got the one now who specializes in more severe autism.  She is super-hippie and super into sensory everything.  She sees her role as getting kids into a balanced state where they are capable of learning and also of functioning in their daily lives without having continuous sensory reactions.  My son is really not so much of a sensory kid, he is more of a language kid.  But he is still a sensory kid, too.  

 

It is not that there are no kids where they get a cure.  

 

But I do not think that is realistic thinking for me at this time.  I think as my son makes other gains in other areas, maybe transfers of those gains into the sensory/OT area will go a long way for him.  

 

I also do not have any personal experience of The Incredible 5-Point Scale, or Zones of Regulation.  They are not recommended as appropriate for my son's age/level right now, by the people who work with him.  But he is doing foundational skills that will help him.  He is doing good where he is right now.  In fact ----- he is doing extremely well.  But he is also doing good for him, he is not the kid in the more advanced curriculum.    But I know a bit about them, from reading and from hearing presentations.  I have heard a few presentations about the 5-Point Scale because it is used in our school district.  

 

I just heard again yesterday, they really think my son's language skills are going to continue to improve as he gets older.  So some programs would be able to be modified, or hey, just do the ones that are more built upon visual supports and add in language to him that is appropriate for him (seems to be making more sense than vice versa -- modifying the language-y ones to be less language-y).  

[PeterPan]

Thanks Texas, that gives me a lot to think about.  You're reframing some of my questions in new ways I hadn't thought about.  I was so worried about doing the OT well this year so we are ok if we lose our funding next year, that it had not occurred to me that OT might, for his situation, be a long-term kind of thing.  That's a really strong way to think through it and also affects who the right person is for the choice of provider.  And you're right, he is SO physical, with SO much crashing and inappropriateness and intensity.  When you're here as the mom, you still just think he's gonna outgrow it, kwim?  You don't stop and think through what it would be like if he's 8, 9, or 10 and STILL doing this.  I was letting the flexibility of the early years and some of the better late than early argument sort of dull me on grappling with that.  And it's the flipside, that when we blow it off as oh he's young (which he feels like he is, with the social problems), you don't WANT to push this issue of sitting down and being whatever.  But he also can't even do what he's intellectually ready to do because he's so, SO.  

 

So I got out his IEP again to reread the OT section and see what she envisions.  Interesting.  It's making more sense now that I'm reading about the BrainWorks stuff.  I think I did not have the vision that the OT is to enable him to chill out and do his work and do it without falling apart, consistently, every day.  I was just blowing it off as having trouble getting there because he's young.  

 

Ok, deep breath.  And you're right, it's not just that he has some sensory issues.  His body is consistently physically inappropriate.  To us it's just normal.  He's that way even with hours and hours at the Y every week.  When people say gymnastics or this or that is equivalent, I snort.  They're nice and they help, but they're not equivalent.  We STILL need more help.  

 

I think I've at least resolved the OT question in my mind, I think.  Now I'm just thinking through how to structure this.  You don't want to reinforce the rigidity, but it also helps to have a plan and some routine and consistency.  I tend to get really boring and just take a good idea and put it on a grid, which isn't very artful, lol.  So, Texas, for your sensory stuff, were you doing a routine for sensory at home and how was that fitting into your day?  Or did you have a certain number of OT sessions a week and that kept it in place?

[Crimson Wife]

I hate to be a Debbie Downer, but I don't think there is anything that is truly "curative" for autism. There are treatments that will definitely help relieve symptoms (and what treatments those are seems to be HIGHLY individual, though some have better track records than others). But anybody who's claiming to be able to "cure" autism is IMHO at best overly hyping the treatment and at worst a snake oil salesperson.

 

OT is helpful for many kids with ASD. Ditto for the Zones of Regulation. I'm not familiar with BrainWorks but the books in their bookstore look intriguing.

 

Think of it like dyslexia- Barton and other intensive programs will teach the student skills that will allow him/her to compensate for the LD but it's never going to be "cured".

[PeterPan]

I hear a lot that there are changes with maturity, too, so that the actual problems decrease.  I think there is slow, incremental progress, too.  

 

Keep in mind -- my son is seeing his 3rd OT.  He has got the one now who specializes in more severe autism.  She is super-hippie and super into sensory everything.  She sees her role as getting kids into a balanced state where they are capable of learning and also of functioning in their daily lives without having continuous sensory reactions.  

This makes sense and seems like a really good goal, thanks.  I think I just really had to hash through it and be honest about what our goals are and what we're likely to accomplish.  

 

No, he could learn the names of the emotions with Zones, but he couldn't actually comprehend it or use it to modulate himself.  It just turned into him yelling that I was making him very angry.  And I think there was sort of this backwardness to how we were implementing it, where we were using pleasurable things so solve a meltdown rather than using those things to PREVENT the meltdown.  So no, I didn't feel like the thought process of ZoR was within reach.  I think the BrainWorks tachometer approach is probably more concrete and quantifiable (too fast, too slow) and something he can relate to and self-assess with.  And I see what you're saying that the 1-5 will probably need a while before he's there.  I was just looking for consistency between programs.  There's a sense though in which they're evaluating different things, even though they're all using color gauges.

[PeterPan]

I hate to be a Debbie Downer, but I don't think there is anything that is truly "curative" for autism. There are treatments that will definitely help relieve symptoms (and what treatments those are seems to be HIGHLY individual, though some have better track records than others). But anybody who's claiming to be able to "cure" autism is IMHO at best overly hyping the treatment and at worst a snake oil salesperson.

 

OT is helpful for many kids with ASD. Ditto for the Zones of Regulation. I'm not familiar with BrainWorks but the books in their bookstore look intriguing.

 

Think of it like dyslexia- Barton and other intensive programs will teach the student skills that will allow him/her to compensate for the LD but it's never going to be "cured".

His ability to come into my world is so inconsistent and his falling apart (or walking away or...)  so frequent, but I guess I'm just used to it and don't think of it in terms of labels, kwim?  It's just sorta who he is.  And I had segregated OT in my mind as something that would help the crashing and nothing else, as bizarre as that sounds.  I hadn't thought of it as something that would help him come back into my world.  But when you reframe it and say he's going into his world because of sensory, then OT can stabilize that and help him come back into my world.  Then it makes sense.

[Crimson Wife]

Meltdowns unfortunately come with the territory in ASD. That was actually my first clue that something was going on with DD2 as a toddler beyond just the speech delay and what prompted me to make the referral to EI. Being a late talker at 19 months isn't that unusual but the intensity and frequency of the meltdowns she was having were NOT normal.

[Tiramisu]

Meltdowns unfortunately come with the territory in ASD. That was actually my first clue that something was going on with DD2 as a toddler beyond just the speech delay and what prompted me to make the referral to EI. Being a late talker at 19 months isn't that unusual but the intensity and frequency of the meltdowns she was having were NOT normal.

 

Of course I can't see behind closed doors but I have also thought the frequency and intensity of the meltdowns around here are not normal.

 

So far the basic message I've been getting from the doctors, therapists, and others who have treated my dc is that they are, as Elizabeth would call it, "kissing the spectrum." My ped put it well when she quoted to me about my kids what a highly regarded specialist told her about her own child, "Aspergers is the one name that would cover the symptoms you're seeing but she wouldn't meet the criteria for it."

[PeterPan]

Of course I can't see behind closed doors but I have also thought the frequency and intensity of the meltdowns around here are not normal.

 

So far the basic message I've been getting from the doctors, therapists, and others who have treated my dc is that they are, as Elizabeth would call it, "kissing the spectrum." My ped put it well when she quoted to me about my kids what a highly regarded specialist told her about her own child, "Aspergers is the one name that would cover the symptoms you're seeing but she wouldn't meet the criteria for it."

And if you want to get really nasty about it, it's the label she's likely to get, LATER, when she can no longer mask it.  Look at Texas' dc and what happened.  Kissing the spectrum for years, and FINALLY, finally he crossed over that line with some obvious measures to where they (practitioners) would admit it.  

 

I don't think we can wait around pretending stuff isn't happening.  That, to me, was the gift of the psych being willing to diagnose ds.  He was saying don't pretend it's not happening.  It's not going away and it's really there, no matter WHAT label the DSM says, and you have to deal with what you see.

 

Also, it might be that if you took her into a place that specializes, they might get there and go ahead and get it diagnosed.  You never know.  

[Tiramisu]

And if you want to get really nasty about it, it's the label she's likely to get, LATER, when she can no longer mask it.  Look at Texas' dc and what happened.  Kissing the spectrum for years, and FINALLY, finally he crossed over that line with some obvious measures to where they (practitioners) would admit it.  

 

I don't think we can wait around pretending stuff isn't happening.  That, to me, was the gift of the psych being willing to diagnose ds.  He was saying don't pretend it's not happening.  It's not going away and it's really there, no matter WHAT label the DSM says, and you have to deal with what you see.

 

Also, it might be that if you took her into a place that specializes, they might get there and go ahead and get it diagnosed.  You never know.  

 

What's interesting in terms of what's happened here is that dd2 who had the most sensory issues early on, funny issues with touching and motor skills, and infrequent but intense meltdowns turned into the most neuro-typical kid you could meet. She was always in-sync socially and people gravitate toward her now. Since dd4 was similar early on, I really expected her to follow the same path as her older sister. Instead we're still having sensory problems affect her grooming and dressing, but she's also started having meltdowns which were really not a problem for her before. So at this point I really don't know what the future will bring. Socially, she really doesn't seem to have a problem. 

[texasmama]

And if you want to get really nasty about it, it's the label she's likely to get, LATER, when she can no longer mask it.  Look at Texas' dc and what happened.  Kissing the spectrum for years, and FINALLY, finally he crossed over that line with some obvious measures to where they (practitioners) would admit it.  

You know, the school district was willing to diagnose him as ASD at age 3, but he never got an official label because he qualified under speech and the ASD testing was an unnecessary step.  We went with what was practical.  It was actually ME who was slow to admit and agree that my boy (who skated the hairy edge of the spectrum for years, IMO) was actually ON it.  When he reached adolescence, his ASD became much more pronounced.  He is still not far from the edge of it some days and in some ways.  He copes well with life much of the time, and he does not have the ADHD which almost always accompanies it.  But in other ways and on other days I am knocked over by the ASD stuff, and I know we have the correct label.  I have had a very long time to ponder these issues, though.  The diagnosis is no longer traumatic.  It is just part of being N's mom.