SPD...how has OT helped your sensory-seeking child?

[caedmyn]

I've been doing some reading on sensory seeking and it sounds like my 7 YO could have vestibular and/or proprioceptive sensory seeking issues.  I'm debating about trying to talk to DH about getting him tested for SPD, but I'm not clear enough in my own mind about how exactly testing/treating could help him.  Can anyone share how treating sensory-seeking issues has helped their child?  I'm also curious about what sort of things OT does/recommends for sensory seeking.

[kbutton]

We have a seeker-avoider, but vestibular issues were one of our things. They give them a lot of vestibular input--they want their brain to learn to be dizzy. It really does help with all kinds of things. We have less car sickness with that.

 

Our son had fight or flight responses to unexpected (and sometimes unexpected) touch, especially from the side or behind him. They did a brushing protocol that toned that down to an (almost) non-existent level. 

 

We also had work with Zones of Regulation, which helped with general self-awareness and techniques to help you learn to present the behavior you should be presenting in a situation. It helps with overall behavior by defining expected behavior for various situations (so, it's okay to be a bit loud and crazy at this event, but not so much at this one, etc.). 

[PeterPan]

Well what symptoms are you having and how much are they affecting life?  Our ds was crashing into furniture (like to a damaging degree), was hitting and banging into us (an unacceptable amount) and just felt this intense need to PUNCH and hit things.  For us, serious gymnastics (3-4 days a week) was able to tamp down *some* of that, but we still had significant, significant issues.  This year we've been getting OT, with neurofeedback, BalavisX, work on retained primitive reflexes, etc. etc.  It's dramatically better.  I think next year we're going to do some OT focused on motor planning and Zones of Regulation.  

 

So I guess it depends on where you start and what you need to improve.  Some of the stuff, like reacting to hand driers in public baths, so quietly improved and dropped off this year.  He's still very kinesthetic, very much with a need to move.  For us it's going to be a multi-year thing.  

 

So yes you want the OT eval and the psych eval.  If the OT isn't helping, the issue is the person doing the OT, not whether OT can improve it.  Our ds is noticeably calmer and easier to live with than he was a year ago.  In fact, for people who see him infrequently, that's what they comment on, how much CALMER he is.  

Edited May 21, 2016 by OhElizabeth

[Mom28GreatKids]

We have had much success with OT for our seeker who is almost 4. He has some avoiding tendencies as well, mostly tactile and auditory (tags, jeans, etc.) He gets lots of vestibular and proprioceptive input at OT and at home. We are doing lots of primitive reflex integration, and Therapeutic Listening that targets his vestibular and proprioceptive systems. Lots of swinging, spinning, etc as well. He is much calmer, less impulsive, less prone to meltdown, and just overall more able to self regulate. Oh and he is finally sleeping through the night regularly. We feel like OT has been a life saver for our family's ability to cope with his special needs.

Edited May 21, 2016 by Mom28GreatKids

[Dmmetler]

For my sensory avoider, it's been mostly things like being able to tolerate being in a public bathroom with automatic hand dryers long enough to actually go and wash hands afterwards, motion sickness, tolerating touch so that if someone brushes against her, she doesn't react like she was hit with a hot poker,  being able to stand on a footstool to reach something without a panic attack, and so on. And this is the kid who theoretically is only "borderline" SPD.

 

We also have done a lot of gymnastics and tumbling, which has helped as well.

[caedmyn]

Well what symptoms are you having and how much are they affecting life?  Our ds was crashing into furniture (like to a damaging degree), was hitting and banging into us (an unacceptable amount) and just felt this intense need to PUNCH and hit things.  For us, serious gymnastics (3-4 days a week) was able to tamp down *some* of that, but we still had significant, significant issues.  This year we've been getting OT, with neurofeedback, BalavisX, work on retained primitive reflexes, etc. etc.  It's dramatically better.  I think next year we're going to do some OT focused on motor planning and Zones of Regulation.  

 

So I guess it depends on where you start and what you need to improve.  Some of the stuff, like reacting to hand driers in public baths, so quietly improved and dropped off this year.  He's still very kinesthetic, very much with a need to move.  For us it's going to be a multi-year thing.  

 

So yes you want the OT eval and the psych eval.  If the OT isn't helping, the issue is the person doing the OT, not whether OT can improve it.  Our ds is noticeably calmer and easier to live with than he was a year ago.  In fact, for people who see him infrequently, that's what they comment on, how much CALMER he is.  

 

I'd mainly be hoping it could help him be less wild in general and/or less impulsive.  He chews on everything...always ruins one lapel on coats, chews holes in long-sleeved shirt cuffs, and occasionally shirt collars, and other random things.  The only time he's still is when he's sucking on a finger and has his hand in his pants (been doing this since 21 months old...sigh).  He is...aggressive I guess I'd say...towards bigger kids/people when he plays.  Like wanting to throw himself on some of the teenage boys or a couple of the men at church, or at the playground the other day he was playing tag or something with a few other kids and every time he caught up to one boy a few years older than him, he'd grab his arm and/or his shirt and hang on.  I haven't seen him do this so much with kids his size, but they often avoid him.  He's big on spinning around in circles and swinging jackets, straps, string, anything longish around, moving at maxium speed/intensity, and jumping on the couch.  He gets hugely revved up in social settings.  I don't think it's a noise thing, I think it's a people or activity thing.  After church, at parties, if people come over to our house, in a group of kids outdoors...he just gets wild.  Oh and he climbs everything.  Doorways, narrow hallways, fences, all the usual things.  None of this is hugely affecting life, other than being annoying and frustrating, except at some point he's going to figure out kids are avoiding him or repulsing him because of who he is not, and not just because they're jerks in general.  He's settled down some...he was crazy as a baby and toddler.  He used to have 60 second baths because he would go nuts in the water, moving around so fast I could not keep him safe.  And he used to bounce incessantly.  When he was 6 months old we went to a school awards' ceremony that was about an hour long, and he stood on my lap holding my hands and bounced up and down literally the entire time. 

 

Idk how much of this (besides the chewing) would be sensory and how much is ADHD.  I know, I know, evaluations.  I don't think there's the slightest chance of DH agreeing to any of them.  We had a talk about orthodontics for my 10 YO last night, and he basically said that he didn't think crooked teeth were that big of a deal and didn't know he wanted to spend the money on orthodontics.  Never mind that all our kids have crooked BABY teeth, 10 YO has a crossbite, 5 YO has a crossbite, 3 YO has a noticeable overbite...  He thinks 7 YO is a perfectly normal, active little boy.  "He's going to be a genius when he grows up," he says.  Maybe, but that's not going to help him much if he ends up jail for doing something stupid because he has no impulse control, and has no friends because he can't figure out socially acceptable behavior. 

 

It sounds like Zones of Regulation might be helpful for him.  Zones of Regulation or Superflex...must decide. 

 

Don't most people have little quirks that are sensory related?  I know I didn't like jeans, or tags, or turtlenecks as a kid.  Those things still bother me to some degree.  My 10 YO chews on her hair, her fingers, clothes occasionally, and other things.  My 3 YO freaks out at the hand dryers in public restrooms.  He doesn't like loud noises in general.  Except he talks at maxiumum volume.  So does the 7 YO.

[PeterPan]

How sugar coated do you want it?  Your dh seems to be missing some clues.  The more clues people miss, the more you start thinking spectrum.  When you start talking SPD and SERIOUS ADHD, which is what you're talking, the more you're talking spectrum.  You're so close to saying things that should be making you ask that question that my serious advice to you is how much are you going to regret if it is IS something more than "just" ADHD and you don't catch it?  

 

Because, really, you could be dealing with something more.  That's pretty serious.  And maybe they don't push it over.  But I'm just saying you're dealing with WAY more than you *alone* are going to solve with just buying Zones of Reg or Superflex.  I'm pretty adventurous and like to learn things and do them myself.  I've gone to the Zones of Reg training, do speech therapy stuff with my son, and I don't have 5 kids ages 10 and under.  *I* had to bring in help.

 

I would strongly encourage you to get enough information in your soul that you feel confident telling your dh that this is a question he doesn't get to override.  And if he has some anxiety about evals, anxiety about gov't, whatever, again I'm saying at some point YOU are also part of this equation and you HAVE to be honest about what is going on and get the help.  And maybe the rest of the family comes along with time.  Maybe YOU are the one doing the learning here and YOU are going to have to drive this a bit and say no honey I read these things and I think you're going to have to trust me and let me move forward.

[Cake and Pi]

I have a seeker-avoider (seeks vestibular and proprioceptive; avoids tactile and visual) and a lot of the stuff you describe your DS doing sounds like my DS#1, though he does all that much, much less often now at 8yo than he did at 3-4yo.  He still climbs our walls/doorways/doors/support posts/fences, rolls, spins, lays upside down on the stairs, jumps off the banister etc., but it's not constant anymore.  It's manageable (admittedly, my tolerance has probably also increased over the years, lol).  We did an SPD eval at the STAR center and took that to an OT for our two sessions that were covered by insurance, which I used mostly to have her teach me what to do with DS#1 at home.  We did a ton of heavy work, joint compressions (brushing did the opposite of help), swing exercises in our back yard, worked up his sensory diet, got and used a weighted blanket and compression vest, and a bunch of other stuff from the books the STAR center recommended.  Honestly, this only helped him a little bit at first.

 

His behaviors were big time interfering with life, so we enlisted an ABA to help us out.  THAT did wonders, and once we got him acting more like a person and less like a crazy wild animal, the work we did home-OT-wise started to help a lot, lot more.  We completely avoid artificial colors and flavors now, and that has helped.  He's also been getting unofficial OT consults through DS#4's therapist for the last year+, which I'm sure has continued to help.

 

My other SPD son (2.5yo) has been getting OT for about a year through EI.  His SPD is completely different from DS#1's but was interfering with his ability to learn, communicate, and eat (he's under responsive-avoidant).  OT has majorly, hugely, incredibly helped him.  I cannot say enough about how well OT has worked for him.  So how much OT helps a kid may depend a bit on the kid and the therapist and what you do at home between sessions.  I don't think you could decide before hand if it's going to help or not.

 

And, yes, I think it's pretty common to see people with little sensory quirks, though that's not what you're describing in your 7yo.  I think SPD can run in families as well.  My oldest and youngest are both dx SPD, my middle two have some quirks, like chewing holes through shirt collars; I have some sensory quirks as well.  I guess the difference, to me at least, is if the sensory stuff gets in the way of learning, enjoying life, and/or interacting with peers.  If it's not a problem then it's not a problem, but if it is a problem then something needs to be done about it.

[FairProspects]

How sugar coated do you want it?  Your dh seems to be missing some clues.  The more clues people miss, the more you start thinking spectrum.  When you start talking SPD and SERIOUS ADHD, which is what you're talking, the more you're talking spectrum.  You're so close to saying things that should be making you ask that question that my serious advice to you is how much are you going to regret if it is IS something more than "just" ADHD and you don't catch it?  

 

Because, really, you could be dealing with something more.  That's pretty serious.  And maybe they don't push it over.  But I'm just saying you're dealing with WAY more than you *alone* are going to solve with just buying Zones of Reg or Superflex.  I'm pretty adventurous and like to learn things and do them myself.  I've gone to the Zones of Reg training, do speech therapy stuff with my son, and I don't have 5 kids ages 10 and under.  *I* had to bring in help.

 

I would strongly encourage you to get enough information in your soul that you feel confident telling your dh that this is a question he doesn't get to override.  And if he has some anxiety about evals, anxiety about gov't, whatever, again I'm saying at some point YOU are also part of this equation and you HAVE to be honest about what is going on and get the help.  And maybe the rest of the family comes along with time.  Maybe YOU are the one doing the learning here and YOU are going to have to drive this a bit and say no honey I read these things and I think you're going to have to trust me and let me move forward.

 

I completely agree. No, most kids do not have the quirks to the levels you are describing. Those examples are far beyond anything my officially dx SPD kid dealt with and we did OT for sensory integration for 3 years. I hate to beat a dead horse, but yes, you really need evals. OT can work wonders and give you tons of tools, but what you are describing is way beyond buying a Superflex book and trying to work through it at home. You need help from professionals. There is nothing wrong with admitting that.

Edited May 21, 2016 by FairProspects

[PeterPan]

I'm rereading this, and this is your 7 yo, right?  Not the 3 yo?  I could totally see what you're feeling like oh, maybe not a big deal, maybe it's nothing, lots of kids are hyperactive and impulsive, if it were a 3 yo.  But for a 7yo?  This is debilitating.  This is serious.  This is a shocking list for him to be going into 8, 9, 10 with.  

 

I think you have to take kids individually.  It's not enough to say oh Dad has some sensory issues and quirks and he did fine, or Suzy has SPD and she did fine.  The question is with THIS child's mix, is HE doing fine? Clearly he's not.  Clearly he's getting a deeper and deeper hole of skill deficits that he's not getting out of without help. 

 

You asked if most people have sensory quirks.  Not to this degree.  And maybe you take your genes (a dab of this, a dot of that) and combine them with your dh's genes (some more dabs of this and that), and the result is some BIGGER DOLLOPS and maybe even some PUDDLES!  And then you realize ok, our kids are not us.  We're going to have to deal honestly with how that's presenting in our kids.  You're really asking the wrong question or thinking of it the wrong way there, because it's not like this is a yes/no, have it/don't kind of thing.  It's more a continuum, with how many genes have mutated.  So you combine your mutations and your dh's mutations and you get more complex mutations resulting in more complex situations that are possibly needing more care than either of you yourselves needed to be successful.  

 

Your 3 yo is young enough to be eval'd by EI.  I would do that.  Just call them in and get it done.  It's free.  Do that before he crosses the window where they won't eval anymore.  If you wait, your evals are going to fall under your ps (ugh) or private.  So truly you will be SO much happier if you place that call to EI and at least get the 3 yo started.  Just with what you've described on him you have enough warrant.  I would do that one pronto.  

 

Then for your 7 yo, I would think what your insurance is and whether you can go private or whether you would qualify for state medicaid or something to get them private evals or whether you have to go through the ps.  The ps is legally (by federal law) obligated to eval.  This too you can have done for free.  Some will do a great job with complex situations and some won't.  If your pricepoint is free, I would STRONGLY encourage you to do it.  They will do all these evals for free and you will learn something.  And if they botch it or get results that don't even make sense or jive right as accurate or thorough, then you formally dispute them and get the school to pay for independent evals.  Not easy peasy, but definitely a way to get there when your pricepoint is free.  All this you can do without impinging on any concerns your dh has about finances.

 

How many more children need this?  :)  With the money saved by doing evals through EI and the ps, you could put your money toward orthodontics for the 10 yo.  Tell your dh something accurate but horrible.  Ask the ortho whether the 10 yo needs a palate expander.  That's the one thing that, if not done around this age (by 11-ish), you actually REALLY REGRET needing later.  Later it's a lot more problematic.  So maybe get him some information that allows you to be pretty confident about *why* he needs to change his mind or be flexible on this.  People are not all the same!  Just because *his* teeth turned out ok doesn't mean someone else's will.  Missing the window for certain orthodontic treatments can result in VERY costly, worse options later.  

 

It's very hard to work with your man and want to help him and not contradict him but need to get certain things done.  

[Mom28GreatKids]

Yes I agree with the above. We all have quirks, but the question is, do those quirks interfere with normal living. Sounds like the answer is yes. And your hubby is right, he likely is Uber smart. Most of these quirky kids are. But if they never learn to live in their world, it doesn't matter a hill of beans how smart they are. Your son sounds much like my almost 4 year old, and his behavior (my son's) is inappropriate for 4, let alone 7. If it is money,most insurance pays for at least some OT.

Edited May 22, 2016 by Mom28GreatKids

[Citrusheights5]

My Ben, sounds a lot your son, right down to the aggressiveness. He actually scared his 2nd grade teacher to the point we had to pull him from school. He has been doing OT, and has been on anti -depressent for 6 months. And this boy is completely changed, but we also gave him a host of alternative appropriate sensory seeing options at home as well. We have a trampoline, 2 balance boards, balls for sitting (4), therapy putty, and football pads for crashing into. He has a corner of the yard specifically for digging holes. All this together has given him appropriate places to get his "fix", OT is lessening the needs for the "fix", and the anti depressent has helped with the aggression. We have started weaning him off of the antidepressant, and weaving in aderall,for the ADD. Once all that is in place we can start working on his LD's. He also has the dyslexia and disgraphia.

 

With my husband, I was able to make this happen by saying : look we need to see what his glitch is and provide what he needs. By providing the sensory outlets and teaching the appropriate time and place to "be a 7-8 year old" we are helping him, and OT is giving me the guidence. If he was a musical genius you would find an instructor for that right?.

Hope this helps, because I do agree these are not normal glitches

Edited May 23, 2016 by Citrusheights5

[geodob]

Caedmyn, what you've described looks more like a delayed development of 'Proprioception'?

Proprioception, is our internal sense of where our body and limbs are.

How this works, is that at both ends of every muscle that we have?  Are what are called 'Proprioceptors'.

 

Which all form a network in our brain, and enable us to internally concieve of body and limbs. 

When we make a movement, it is these Proprioceptors, that recieve the message from our brain, To contract or extend a muscle.

But another crucial role that it plays, is when we aren't moving?

Where all of our muscles don't go 'floppy'?

Rather they are all held in a 'balanced state of tension'.

With all muscles having an 'opposing muscle', to maintain balance with.

 

Though one major type of 'Proprioceptive Disorder'?   Is an inability to maintain opposing muscles, in a balanced state of tension?

Which basically means that muscles need to be constantly active.  So that their is constant movement.

But one way to cope with this, is focus attention on one movement. Which is done repetitively and used as a distractor.

Chewing on things, being a common one.

So that they have to keep moving to relax?

Where you wrote that as a baby/toddler, he used to 'bounce incessantly'.

[caedmyn]

I think people might be thinking from what I've posted that 7 YO does these things more than he actually does.  He's not randomly tackling people at church, it's either guys we've had over to our house at some point and they've rough-housed with him a little bit, or guys who he sees rough-house a bit at church with their kids or another younger kid and he takes that as an open invitation to play, and I think in his mind big guys are friends he can jump on.  He does it occasionally, not every week or even close.  And he doesn't usually grab kids at the playgrounds either.  I'm not sure why he kept wanting to grab the one kid last week.  Usually it is more not reading social cues well enough to understand when someone is tired of playing or annoyed at him being goofy and trying to get him to go away (without explicitly saying it), or not recognizing that the 2 YO/3 YO he's trying to be friendly to by making monster noises every time they come near looks a little apprehensive and backs away every time he does it.  He doesn't spin all day long, usually just a couple of minutes once or twice a day though occasionally he wants to spin a lot for a day.  And he has mellowed out a fair amount since he was a toddler, and improved in several areas.  I'm not saying that I think all the things he does are normal, but I don't think they're spectrum behavior either, not in the amounts he does them. 

 

The orthodontist did recommend a palate expander + pulling teeth for DD.  I have another appt with him next week to talk about 10 YO and 7 YO both so I'll ask some more questions and see what he has to say.  DH is like this about everything though.  He thinks everything is some variation of normal, or there is no normal so you just live the way things are and don't make a big deal of it, or something.  I don't understand how he thinks at all. 

 

I guess I will have to pay attention to whether the 3 YO seems to have other potential sensory issues, but I think he will outgrow the noises-bothering-him thing.  He's already stopped reacting to some noises that used to bother him, like the Vita-mix blender.  And it's hard to say how much of his fear of hand driers and the hand vacuum is because certain of his siblings enjoy luring him close to them and then turning them on to scare him.  Some hand driers are so loud they make me want to scream too, particularly the ones that are mounted low and you stick your hands into them, inevitably put in restrooms with tile on the walls to amplify the noise.  We ran into a lot of those on a vacation a couple of months ago, and he disliked hand driers a whole lot more by the time we were done with it.

 

I think I will push for OT for 7 YO from the angle of "it could help him settle down and be less impulsive and wild", and not mention SPD at all.  That's probably more likely to succeed than saying I think he has issues, and it seems like a reasonable place to start. 

[caedmyn]

DH sounded halfways open to OT for him. I'm looking into getting an evaluation done in a couple weeks when we visit my parents 3 hrs away, because there are only 2 OTs here who work with kids and both have a 6-12 month waiting list. There are a lot more where my parents live, and no waits, so hopefully I could at least get him evaluated and get one session in for a plan to do with him at home. That is if DH doesn't balk at have to pay for a pediatrician visit for a referral first. I don't understand why they have to have a referral as we don't have insurance anyway, but it's around $200 for the visit to the ped which is a bit ridiculous imo.

 

And I'm working on setting up a visit for my 5 yo with the Scottish Rite center here for possible speech issues. He keeps repeating sounds in the middle of words, like saying "I want to go play-ay-ay." I'm going to ask if they will/can screen for phonemic issues too.

[caedmyn]

I took him in for an OT evaluation.  Based on the questionaire that I filled out he came up right in the normal range for almost everything, which is very odd...maybe I'm not good at filling these things out, because he definitely does a lot of things that I don't see other kids, including my other kids, doing.  She said she wouldn't classify him as having a SPD because of that but she did agree that he has some sensory issues and gave me a sensory diet plan for him to do at him.  She showed me how to do this protocol with brushing his arms and legs and then squeezing them with my hands.  He was SO much calmer after we came home from that evaluation with just the little bit she did with him there, and the next day too.  He started ramping back up again the following day, but it seems like the brushing protocol plus stuff like bear crawling and crab walking work really well to help calm him down.  I think this will help his impulsiveness some too...not sure if it's going to help him focus or not.  It will be nice if it is just that easy to help him calm down!  Oh and she recommended a developmental vision screening, because she thought his trouble with making/keeping eye contact might be related to a vision problem, and the little bit she did with eye tracking seemed a little difficult for him to do.

[kbutton]

My less severe sensory seeker has some mild sensory behaviors related to retained reflexes. Most of those have cleared up now that vision therapy worked on the retained reflexes. He literally needed to provoke certain sensations to try to stimulate his body to work right. His ADHD-ish behaviors have toned down to the point that we're back to wondering if he is or isn't ADHD. 

 

His speech therapy is also helping for things like chewing on shirts--he did a lot of that at one point.

 

***This is not the child I talked about in a previous post, but this one did OT as well. We had them both evaluated when we were seeking OT for my older son.***