Sensory processing disorder (sensory seeking)

[saw]

I'd appreciate some views on what I think are sensory processing issues my ds 8 has. He is constantly twitching, wiggling, touching, etc. IOW driving me batpoopcrazy. I have three older dcs, each of whom has had various amounts of PT, OT, speech, etc etc, so I feel pretty confident that I'm seeing with ds 8 is not entirely "normal". My standard for intervention has always been to avoid testing and therapy unless/until the issue has a negative impact on the child in some way. I think we've hit that point here, and I'd appreciate some advice from anyone with experience or thoughts to share.

 

What's gotten us to this point is that ds takes ballet (special audition-only outreach program for very talented kids, with LOTS of perks, so I really don't want to pull him out). Wednesday classes are fine. Saturday classes are not as fine. One of the teachers is a jerk. We had an issue at the beginning of term that I had to deal with, but it seems like the teacher is one of these people who doesn't get that 8yos are 8 yos and that not all of the group of 20 something kids is likely to behave perfectly for the lesson. Today ds gave the wrong answer to a question to which teacher responded "Oh God!" and at another point told ds that his concentration was "appalling." While I think this was entirely inappropriate, I'm pretty darn sure that ds's concentration was pretty appalling at the moment. I'm with him during piano and harp lessons and I have seen how he can be and only the fact that his music teachers are saints and ds's talent keep those lessons going!

 

Anyway, I think there are two possible issues, one an attention issue and one a sensory issue, but I think the sensory one may be the one to focus on first. Where we live it's difficult to get services or evaluations, so I'd like to get input on what I should be looking for, what we could do at home to help, books to read, etc. Many thanks.

[prairiewindmomma]

IME, the attention evaluation is quicker to get. I'd go there first, as some of my kids' behaviors have been to maintain focus more than sensory.  Once the attention issues are taken care of, it should be time for your sensory eval. ;)

[saw]

Not around here. It's very difficult to get good evaluations and since we're on the NHS, could take months and months, and that's if the GP agrees to proceed.

[PeterPan]

What you're describing crosses over with Tourette's and ASD. Can you go elsewhere for evals or pay for private?

 

twitching isn't explained by ADHD.

[kbutton]

Are you saying literally twitching or are you characterizing his movements this way because of their non-productive nature (for example, they happen "just because" he needs to move and not to accomplish a purpose)?

 

Attention and sensory can overlap. Sensory can make attention worse, but I don't think the reverse is really true (maybe it is). Our OT described sensory stuff as a distraction with a source, but attention issues seem to be more within a person but not tied to a physical need (very rough paraphrase). The tricky thing about sensory is that you can make it "worse" or end up spending a lot of time doing ineffective things if you aren't targeting the proper thing. If you can get an evaluation and then know WHAT to target at home, and what signs to watch for regarding effective/not effective results, I think that's better than just doing some kind of across the board OT program at home that may be time-consuming and miss the point. For instance, my son needed vestibular input. We knew that sometimes made him feel better, and sometimes he avoids it. It took a very experienced OT (30 some years in the business, founded the clinic and a local professional OT society) several weeks to figure out what activities to pair with that vestibular input so as to make it effective rather than making him kind of floaty and twitchy afterwards. We would have just kept going on vestibular stuff and not really known for sure that something was off. 

 

 

Our OT has recommended this book: http://www.amazon.com/Raising-Sensory-Smart-Child-SensoryProcessing/dp/0143115340/ref=sr_1_2?s=books&ie=UTF8&qid=1422764600&sr=1-2&keywords=sensory+processing+disorder 

 

I am sorry the teacher is being rude. I think a lot of "elite" professionals don't like to work with anything except perfect, but I could be wrong about that.

 

One tiny thought that is probably not reassuring (fair warning)...could he have so much physical activity on a consistent basis that he can't wind it all back in? I know the common thought is to wear these sorts of kids out, but it can actually be too much of a good thing. Alternatively, if you think there is some truth in that, but it sounds a step too far, are there certain physical activities that just wind that spring tighter and tighter vs. the overall level of activity? You don't have to speculate about that out loud here--just some food for thought. I know that my kids can be this way. Some activities (mostly not physical in our case) are better restricted to very rarely allowed, or to certain times of the day--once the rabbit is out of the hat, it refuses to go back in. I know some other kids who seem to be like this with highly physical activities. (My one son is like this sometimes; the other one needs some activity to stimulate his arousal level. Both do very poorly after using electronics for any length of time.) And as I stated in the last paragraph, some activities are disorganizing to my son, while others organize him, and sometimes seemingly similar activities have very different results. Our OT said that in general, "heavy work" (anything with significant resistance or added weight) is almost always disorganizing, but other than that, it's really individualized as to how the child responds.

 

As for attention, we are using Zones of Regulation to bring some analysis to behavior and tools to take behavior from one state to another (this works with sensory stuff--he tries various tools to help him move from one state of being to another). For as much as sensory is contributing to attention, this helps. Otherwise, the attention thing has increased in intensity until we finally tried meds (and they are wonderful!!!). We've recently not only seen our son inhibit his behaviors, he is becoming aware of behaviors and his own awareness of his awareness (which is huge, since he is on the spectrum). Very good stuff, and it's directly tied to meds--he brought it up, though he wasn't sure how to describe it at first, but it started out as, "when I take my meds, I think I..." and then he'd describe how it makes him feel about his performance, etc.

 

 

[saw]

Thanks. I probably gave the wrong impression with twitching -- it's more the always fidgeting, always touching, never on the seat behaviour that drives me crazy and, I think, is driving the ballet teacher nuts.

 

I spoke with a few OTs a few years ago when ds's crazy K teacher (at crazy school, which we left) complained about him acting like a 5 yo. OT here is the usual business of long waitlists, long travel times, not very knowledgeable, so I'm just dreading trying to start that up. I'm highly unlikely to get anywhere with ADHD or ADD, as according to the NHS we have to go through the GP and get the school involved etc, and I'm quite sure neither of them would be helpful as he does well in school (school is great at understanding that 8 yo is 8 yo!). If addressing sensory issues does not help, then I may go private on ADHD but I'd like it not to be the first thing we try.

 

I'll have a look at the book, thanks.

 

I think the ballet teacher is simply unpleasant and may well be the only adult on the planet who does not like my ds! DS, while he can be full-on, has a remarkable ability to charm even complete strangers as he genuinely loves people and it shows. Ballet teacher is probably still ticked since I complained about something he did at the beginning of term and I suspect he knows he was in the wrong. I've told DS just to work on paying attention and stay out of his way, and we'll reevaluate in a few months.

 

It's interesting about the physical activity -- I worry that he doesn't get enough, since all he gets is break at school, pe at school and ballet twice a week. I'll keep an eye on that and see how what affects him. He's definitely a screen addict, and I limit that pretty strictly. No TV on school nights and only occasionally at the weekend. IPad is limited as a reward for good behaviour (maybe counterproductive!) and has to be split between educational and non-educational. I definitely think that too much screen time throws him off.

 

Thanks.

 

Are you saying literally twitching or are you characterizing his movements this way because of their non-productive nature (for example, they happen "just because" he needs to move and not to accomplish a purpose)?

 

 

 

Attention and sensory can overlap. Sensory can make attention worse, but I don't think the reverse is really true (maybe it is). Our OT described sensory stuff as a distraction with a source, but attention issues seem to be more within a person but not tied to a physical need (very rough paraphrase). The tricky thing about sensory is that you can make it "worse" or end up spending a lot of time doing ineffective things if you aren't targeting the proper thing. If you can get an evaluation and then know WHAT to target at home, and what signs to watch for regarding effective/not effective results, I think that's better than just doing some kind of across the board OT program at home that may be time-consuming and miss the point. For instance, my son needed vestibular input. We knew that sometimes made him feel better, and sometimes he avoids it. It took a very experienced OT (30 some years in the business, founded the clinic and a local professional OT society) several weeks to figure out what activities to pair with that vestibular input so as to make it effective rather than making him kind of floaty and twitchy afterwards. We would have just kept going on vestibular stuff and not really known for sure that something was off. 

 

 

Our OT has recommended this book: http://www.amazon.com/Raising-Sensory-Smart-Child-SensoryProcessing/dp/0143115340/ref=sr_1_2?s=books&ie=UTF8&qid=1422764600&sr=1-2&keywords=sensory+processing+disorder 

 

I am sorry the teacher is being rude. I think a lot of "elite" professionals don't like to work with anything except perfect, but I could be wrong about that.

 

One tiny thought that is probably not reassuring (fair warning)...could he have so much physical activity on a consistent basis that he can't wind it all back in? I know the common thought is to wear these sorts of kids out, but it can actually be too much of a good thing. Alternatively, if you think there is some truth in that, but it sounds a step too far, are there certain physical activities that just wind that spring tighter and tighter vs. the overall level of activity? You don't have to speculate about that out loud here--just some food for thought. I know that my kids can be this way. Some activities (mostly not physical in our case) are better restricted to very rarely allowed, or to certain times of the day--once the rabbit is out of the hat, it refuses to go back in. I know some other kids who seem to be like this with highly physical activities. (My one son is like this sometimes; the other one needs some activity to stimulate his arousal level. Both do very poorly after using electronics for any length of time.) And as I stated in the last paragraph, some activities are disorganizing to my son, while others organize him, and sometimes seemingly similar activities have very different results. Our OT said that in general, "heavy work" (anything with significant resistance or added weight) is almost always disorganizing, but other than that, it's really individualized as to how the child responds.

 

As for attention, we are using Zones of Regulation to bring some analysis to behavior and tools to take behavior from one state to another (this works with sensory stuff--he tries various tools to help him move from one state of being to another). For as much as sensory is contributing to attention, this helps. Otherwise, the attention thing has increased in intensity until we finally tried meds (and they are wonderful!!!). We've recently not only seen our son inhibit his behaviors, he is becoming aware of behaviors and his own awareness of his awareness (which is huge, since he is on the spectrum). Very good stuff, and it's directly tied to meds--he brought it up, though he wasn't sure how to describe it at first, but it started out as, "when I take my meds, I think I..." and then he'd describe how it makes him feel about his performance, etc.

 

[EndOfOrdinary]

At 8 my son would have been labeled ADHD. Dh is a public school teacher of high school and just could not take it. He was really mean at times. Ds was a high energy kid. Everyone from church to grandparents to co-op talked about how he was "wiggly." He has calmed down physically a lot in the last two years with a bit of focused practice. His brain is still a crowded mess, but we are still working on it.

 

The figdet ball has helped with the self stim sensory stuff. He uses it all the time in meetings and lessons. We turned the practiced stillness (starting at twenty seconds) into a game at home and then brought it into various outside activities. He had to try to be still with his mouth, body, and mind for twenty seconds, then we began adding ten second increments. If it sounded like a game, he would do it with me. The results have been very positive.

 

It is not a diagnosis, and I do not believe my son actually has a medical issue. I dated a guy and tutored a few kids who actually needed meds. My son is not in that place. He just is kinesthetic. You could try it and see if it helps.

[Davysmom]

I agree with you I would look at sensory first. I completely agree with kbutton that too much or certain types of activity make it worse.

[geodob]

It is notable that his 3 older siblings had various amounts of PT and OT.

 

It might be helpful to understand why you don't twitch and wiggle, as you sit in your chair reading this?

Also why you don't flop in your chair?

As you sit in your chair, a whole network of muscles throughout your body and limbs?

Are each maintaining a balanced state of tension.

That in coordination, keep us sitting up, and relatively still.

 

Where perhaps you can imagine the precision involved with keeping this network of muscles in coordinated and balanced state of tension?

Any slight movement, such as leaning forward a bit?

Requires a reset of the muscle network, to a new coordinated state of balanced tension.

 

But you might consider what it would be like?

If you weren't able maintain a balanced state of tension, in all of the muscles in this network?

To cope with this, all of the muscles operate in a constant 'rocking motion,  to approximate balance.

Which creates difficulty with managing, when the whole network of muscles?

Are each only providing approximate information?

 

Perhaps you could then consider the relief that 'Wriggling' provides?

As the whole muscle network, is in a dynamic process that actually requires little attention and control.

Where it is 'let go', rather than being 'held back'.

 

We think of 'staying still', as something that doesn't require any effort?

As we aren't doing anything.

But in fact, it is a highly coordinated activity.

[kbutton]

I am sorry it's so difficult to get reliable resources. We've put off OT as long as we have because I didn't want just ramped up play time (and waiting got us to the age to use Zones, so it turned out okay). We were just so busy that I wanted to see some ownership of things on my son's part, and at ten, he can kind of do that now with help.

 

[Storygirl]

DS10 was diagnosed as sensory seeking at age two. He had a bit of OT back then as part of early intervention, but when he aged out of that at age three, we didn't pursue further OT. The diagnosing therapist downplayed the diagnosis and left me with the impression that it was just the way that DS was and that I shouldn't worry about it too much. I distinctly remember her telling me that people with sensory issues find ways to cope, such as gum chewing. I think she had good intentions and didn't want to worry me or make me think that my toddler had some kind of major problem, but, looking back, it really was a disservice. I was left feeling like OT didn't have much to offer for him and he was just going to have some lovable quirks (ha ha). He did receive OT as part of the early intervention, but only a group play experience twice a month. There were a couple of therapists in the room, but DS didn't get much individualized attention, and I as his parent didn't get any information from them that indicated that OT would have a significant impact and was something that we should keep doing. So we dropped it at age three.

 

This past year DS was diagnosed as ADHD (we always suspected/knew this about him but did not seek a diagnosis until we decided we should try meds) and also had a full NP exam, which then steered us toward seeking an OT evaluation. And oh my, what we have learned this time around. There are so many ways that DS benefits from OT that I truly regret not getting this kind of help for him when he was younger.

 

All this to say, I understand your reluctance to enter into the whole bother of dealing with doctors and the health care system. I really do. Sometimes we wonder if the benefits will be worth all the hassle. But if your son really is sensory seeking, there is a lot that OT can offer, and it might not be a bad idea to get the ball rolling so that he can eventually get services.

 

By the way, DS used to take ballet (never seriously, as he lacked both interest and talent to take more than one class per week) and is a gymnast. All of my kids have been in ballet, actually, and my oldest is hoping for a career as a professional dancer, so we have a lot experience with the whole ballet culture. Some teachers can be very hard nosed and demanding of perfection, because that is the way that they themselves were trained. Not everyone is that way, though. If your son is talented and wants to continue in dance, I'd worry that having a teacher who is not understanding could discourage him. Is there any possibility of him taking class from a different teacher, maybe on another day of the week? If not, I would try to have a conversation with the teacher to explain that your son loves ballet and is trying hard but has some attention and sensory issues that may come into play. I would try hard not to suggest anything negative about the teacher (because that could backfire) but phrase it like you are just clueing him in to some issues your son struggles with and ask him if he has any ideas of things that could help. This may not change anything, but at least you would know that you tried to address it head on.

[saw]

Thanks all. I think I'll bite the bullet and get in touch with an OT. It sounds like it would  not work to try some things at home, although I'm definitely trying the practiced stillness.

As for the ballet teacher, ds is in an outreach program intended for children from disadvantaged backgrounds (somehow though most of the kids are not exactly disadvantaged!), run through a prestigious ballet company, where the lessons and the uniforms are free. He loves the Wednesday class, but the Sat class has this one teacher who is just a certain type. I've chatted with him a couple of times and I'm certain that if I mentioned issues, he'd label ds straightaway and from there on ds would be strongly disfavored.

[She Reads a Lot]

In case this is helpful, here is our experience with an ADHD/SPD kiddo. For years, I didn't want him labeled and just thought he was a typical, active little boy. But as he got older, he started to get frustrated by his inability to focus/concentrate (we started homeschooling halfway through first grade b/c p.s. was a disaster). When we started to hear negative self talk last spring (he was in fourth grade), we jumped into trying to get to the root of things.

 

Here is the cool part: once we confirmed that he did have SPD and worked with an OT, his ADHD was way way way better. It's like he was so out of sync that it was causing the ADHD. My hubby says you would think we'd found a miracle pill for his ADHD but instead, it's just us helping him to stay regulated via a few exercises that he does daily. Now he often goes and does his regulating activities on his own when he's extra wound up.

 

Oh, have you looked at food coloring? Removing that from our son's diet was huge. We had an accidental ingestion of a soda with food dye last week and the behavior was (once again) dramatic. Finally, he sees it and has promised not to cheat. There are other things like high fructose corn syrup and even gluten that many parents of ADHD kiddos see making a difference when eliminated from the diet.

 

One interesting thing to note: for our son, "heavy work" is the key to calming down/getting regulated. Obviously this depends on the child and where he/she is over-responsive or under-responsive. But I wanted to mention it since that is going to vary by child.

 

I think you are on track with starting to address the SPD first. Maybe you'll still need to deal with the ADHD. But maybe it will get worked out as you address the SPD and consider his diet!

 

Best of luck,

Christina

[Jenn in CA]

 

 

But you might consider what it would be like?

If you weren't able maintain a balanced state of tension, in all of the muscles in this network?

To cope with this, all of the muscles operate in a constant 'rocking motion,  to approximate balance.

Which creates difficulty with managing, when the whole network of muscles?

Are each only providing approximate information?

 

Perhaps you could then consider the relief that 'Wriggling' provides?

As the whole muscle network, is in a dynamic process that actually requires little attention and control.

Where it is 'let go', rather than being 'held back'.

 

We think of 'staying still', as something that doesn't require any effort?

As we aren't doing anything.

But in fact, it is a highly coordinated activity.

 

This is fascinating. I have a 6yo we adopted at age 2.5, who was severely malnourished. She was lacking a lot of core strength in particular. She had PT, and is doing a lot better. BUT she is still soooo wiggly. It's like she can't keep it all together. I wouldn't say she's an active kid; she prefers to sit and do quiet things. We make her do plenty of active things. But when she sits, if she is not actively engaged (such as waiting her turn in a board game, or during a math lesson when I'm talking to her sister), she has to touch everything on the table, rock, lie down, etc etc. She cannot just sit there. She will also seek out my foot and put her foot on top of mine. Or fiddle with my sleeve, or play with my hair.

 

When she runs, even if she's running really fast, she bobs her head from side to side like it's loose!

 

She's also got a super-light touch, and lacking in finger/hand strength.  She has had to work at pressing harder when writing.

 

Anyway, how do I help her to be less fidgety? Does she need more strength still? 

[geodob]

This word 'strength' concerns me, as it creates confusion?

Our nervous system is actually an 'electrical system'?

Which operates with milli-volts.

 

At both ends of every muscle, we have what are called 'Proprioceptors'.

Which are like the +ive and -ive sides of any electrical device,

 

At birth, this just works as an on/off process, where muscles can only contract or relax.

Which is what is termed as our 'Primitive Reflexes'.

The developmental process, involves learning how to inhibit and take control of this automatic Off/On reflex.

 

This then allows the development of a new 'muscle controller'?

Which works in the same way as 'volume control' button.

Where volume control, is equal to muscle contraction control.

 

If the volume control button isn't working effectively, and cant be turned up to full volume?

It would be wrong to conclude that the problem is a 'weak sound system'?

 

Where this is often the wrong conclusion, with motor muscle difficulties?

Which sees the problem as a weak muscle system, that needs to be made stronger,

 

When the real issue, is with the ability to effectively use the volume control of every muscle.

As you sit reading this, a multitude of muscles are set at a contraction/volume level.

Which stay set at their level.

 

But then you might consider if their is a difficulty with keeping the multitude of muscles, set at their volume/contraction level?

How this could be experienced and observed, as being 'wiggly'?

[Jenn in CA]

That makes sense.

 

So what helps with improving this... controlling the volume?

[geodob]

As I considered your question about 'what helps improving this... ?'

I recalled many years ago, doing Tai Chi which you might know about?

Which is an ancient Chinese martial art.

But what is unique about it, is that all movements are carried out in a 'slow fluid movement'.

Which is often described as a 'graceful movement'.

 

As an example, perhaps you could lift and extend your arm to one side.

Also turning your hand as you do this.

But this time, do it very slowly, and take about 5 seconds to do it.

 

Then slowly bring it back, and place your hand on table in front of you.

 

With your arm muscles extending and contracting, as you did this?

Perhaps you could also see this as a volume control of the muscles?

 

Maybe you could do this slow arm movement again?

But this time, pause at some positions as you do this?

 

Then really observe how you maintain these pauses?

Looking at your hand, as it is held still in mid air?
 

As you look at your hand held still in mid air, and continue to hold it still?

You might find it increasingly difficult to keep it still?

But if you give your hand a brief 'wiggle'?

Then you can start to keep it still again.

Holding it a 'volume level'.

 

So that practicing making very slow movements, and pausing at points in between?

Rather than just improving, helps to develop the ability to control muscle volume.