The Three Stooges of Comorbidity... (Stooge #2 - Sensory Processing Disorder)
Imagine that you are having a conversation with Haydn. You are standing in a mall. There are a few people milling around, but it's not too crowded. The people are not a distraction. The two of you talk for a few minutes, when Haydn suddenly flinches and his eyes start to wander.
Did you hear that noise?
Probably not.
You resume your conversation and after another minute or so, Haydn flinches again. His eyes dart around the mall. Clearly, he's looking for something.
Didn't hear that one either?
Well, that noise you don't hear, is very distracting to Haydn, and will continue to buzz in his ears during the rest of your conversation. Everything you say to him, everything he watches or sees is being processed, but that noise that you don't hear, is rattling around inside of his head the whole time, scrambling up the messages going in, and the ones going out.
It could be the fan in the air conditioning ducts up by the ceiling. It could be a ringing cell phone in one of the stores across the mall. It could be a buzzing light bulb in the lighting fixtures. It could be anything.
Listen closely...
Still don't hear it?
Of course you don't. You do not have super-strong hearing like Haydn. You do not have to deal with Sensory Processing Disorder like Haydn. And you're lucky.
ºIntroducing, Stooge #2 (Sensory Processing Disorder)
It's time to talk about Asperger Syndrome's idiot friends, The Three Stooges of Co-morbidity, once again.
They are Obsessive Compulsive Disorder, Sensory Processing Disorder, and Pragmatic Language Disorder. These annoying little bastards have piggy-backed their way into Haydn's life with his Asperger Syndrome diagnosis, and cause nothing but problems.
Sensory Processing Disorder is when your senses seem to act with a mind of their own. And that mind is bi-polar, with no attention span, and a bad attitude. It lets sensory information in when you don't want it, blocks things from coming out when you really need them, and sends sensory messages all over your overworked and over-stimulated mind, whenever it wants to - and it usually sends them to all the wrong places. It constantly causes a ruckus inside your body and mind, making everything more difficult than it should be, complicating the simplest of tasks, making your life a constant war with yourself and the environment.
Or, if you happen to be a textbook definition, type of person...
Sensory Processing Disorder (SPD) is a condition that exists when sensory signals don't get organized into the appropriate responses. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the condition is not treated effectively.
Sensory Processing Disorder is unlike anything thing I've ever encountered in my life. If I did not see it's disruptive effect on Haydn's life every day, I would have a hard time buying into it the whole concept. It can affect EVERYTHING and ANYTHING in your life. ANYTHING. The damn thing turns up everywhere.
Imagine what it would be like, if the sound, smell, sight, and texture of just about everything in the world distracted, irritated, and annoyed you. Always. No matter what. Forever. If the simple act of using a fork, or writing your name, or running and skipping, became a challenge. A challenge that required hours of therapy and repetition to gain a somewhat passable mastery of these skills. Your clothes constantly irritate your skin, until you want to rip them right off of your body. Your arms and legs, have trouble working in synch with one another, making you very clumsy and awkward. Your ears are so sensitive that even the smallest background noise rips through your head like a freight train. You hear every voice and noise in the room at the same time, and at THE EXACT SAME VOLUME.
ºSeekers and Avoiders
According to the experts, when you are a sensory super-freak like Haydn, you may be one of two types. A Seeker or an Avoider.
For example...
*See that package of diapers on the shelf over there?
You absolutely MUST run over and touch it. It just has to be done. You've been told not to do it, but you are compelled to put your grubby little mitts all over these diapers. Pressing your fingers against it, you revel in the smoothness, the crinkly noises of plastic on Pampers tingles your ears, and you press your face into the package, inhaling it's powdery freshness.
You are a SEEKER.(Your senses are hyper-reactive. You need constant stimulation...)
* You are sitting on the couch watching TV. Mommy sits down next you. She puts her arm around you gently while you watch. You grab her arm, and not so gently put it on the couch next to you. Every time she tries to hug or snuggle, you move her arm way, and eventually get up and leave the room.
You are not a little turd, you are an AVOIDER. (Too much stimulation can be very distracting, cause anxiety, or even physical discomfort...)
Haydn loves to grab, touch, bump into anything and everything he can get near. He is a Seeker. (No Harry Potter jokes, please...) When you sit next to him, he will (if you let HIM initiate it), scoot right over and wedge himself against you, throwing an arm or a leg over the top, often putting his head right on your chest.
Rather SEEKER-ish, wouldn't you say?
Then, for no apparent reason, an alarm seems to go off in his head and he throws your arms off, and pushes you away. Other times (usually when someone else initiates contact), he will grab your arm, and move it away, scooting as far away from you as he can. He does not want you to touch him. A little AVOIDER in there too. It's not often, but it can get pretty extreme when Mr. AVOIDER shows up.
You're probably saying to yourself:
This guy's nuts... That sound like something any six year old boy would do.
You're right. It is.
However...
Just because Haydn is doing what every other kid is doing, does not mean that he is doing it for the same reason.
I am always more concerned with finding the cause of Haydn's more quirky behaviors above all else. Once we find the cause, we move on to the behavior. We will try to help him find a way to control himself. (Preferably without jumping through the ceiling)
He could be exhausted, which leads to a major dip in self control. He could be stressed out about something in the room (or something he's thinking about), or it could simply be an overly stimmed-out environment that is frying his little neurons, and some tactile stimulation is what he needs to help get himself grounded a bit. No problem. We can figure out a way to work it out. As annoying and distracting as the sensory issue may be, sometimes the coping behavior is just as distracting. If he starts jumping and spinning and flapping, getting all Stiminy Cricket because he can't deal with something in the room, he may never get to relax, enjoy himself, or simply finish whatever he may have intended to do. And it's very important that Haydn work out as many of the solutions to these situations himself as possible.
Haydn will never be a victim of his environment. There is always a way to 'beat the room.'
Haydn dictates what he can and can not do. He determines what he will and will not enjoy... not his environment.
ºTime for a Wardrobe Change...
SPD seems to have an impact on everything in Haydn's life. Even his wardrobe. Certain types of fabrics really irritate Haydn's skin. He has very sensitive, very fair skin. He's so fair skinned, he's almost clear. Tight clothes? Not going to happen. Collared shirts? Also not happening (for now). He can't put one on without constantly fondling the collar - pulling and tugging at it incessantly, trying to keep it off of his skin. It doesn't seem cause any physical problems like some of the other types of shirts. It just annoys the heck out of him. So, we will be re-introducing the collared shirt this spring.
Should be fun...
Very bright colors (at least according to Haydn) give him a headache, so he likes to keep a more neutral tone to his outfits. Browns, grays, blues, etc.... which I don't see as being a problem. I think he will survive if he never wears a day-glo Hawaiian shirt to school. Jammies left the building years ago, and I don't see them coming back any time soon (too tight).
ºSee Haydn Run (or - Woody, I presume... )
Haydn has a slightly offbeat sense of proprioception.
Proprioception is the sense of the relative position of neighboring parts of the body and strength of effort being employed in movement.
Just in case you didn't know...
It makes his limbs appear to be either very heavy, or loose and rubbery, depending upon what he us trying to do. (Sometimes he turns corners a little too tightly, bumps into things, knocks stuff over, etc.). When he was a baby, he was an average crawler, slightly above average cruiser, and walked like a drunken sailor. A little quirky along the way, perhaps, but nothing that really caught our attention.
We began to notice that something unusual was happening with Haydn's coordination when he started to move around with a little more speed. He developed a rather unique running style. When Haydn ran, his arms and legs acted as though they wanted to go off in four different directions - flopping and flapping all over the place. It was like someone cut the strings and the puppet was making a run for it.
He ran like Woody from Toy Story.
Watch the movie. See Woody run? That was Haydn.
Some running-form drills at the track tightened things up a little, but when he gets a good head of steam going, things can get a little loose, and Woody reappears. He still gets a little jumpy, Stiminy Cricket move going when he's in a heightened sensory environment. Sometimes that little body just has to move. He jumps and spins. Flapping his hands, and shaking his arms and legs around. And when he really starts a-hoppin', it looks to me like he's trying to make sure that all of his parts are still attached.
Still a bit of a work in progress... But he's getting there.
Haydn receives Occupational Therapy twice a week in school, (and has for about three years) where he works on his SPD and other physical challenges. They have helped him learn to sit properly, work those damn utensils better, color with crayons, work buttons and zippers, many important life skills that he just couldn't master an his own.
I learned a little about a certain theory that asserts that there may be a lack of communication between the different sides of Haydn's body (thank you Mr. Saxon) that gives a herky-jerky look to some of his movements. It is like there is an invisible cross that divides his body into quadrants. And the right and left sides, top and bottom, and diagonally connected sections don't work very well together. The lines of communication need to be established and strengthened. I've lived with this kid for six year, and I believe that there is real validity to this particular line of thinking.
So I try to get Haydn to work on simple movements that require his reaching across the body, crossing this invisible barrier. Right hand to left pocket. Touch the left foot with the right hand. I put his glass on the wrong side of his dinner plate, so he has to reach across to grab it. Little changes to his normal physical maneuvers.
Constantly shaking things up. Constantly annoying him.
We also do some improvised O.T. together. We go to the track, and shuffle from side to side along the lane lines, do some bear crawls, and a lot of jumping jacks. Hopping, skipping, anything I can think of - trying to get multiple muscle movements, and cross-body movements going. We even practice walking. Keep the arms 'low and slow,' relaxed wrists, arms in a little tighter. Anything that looks a little disconnected, gets a workout.
And it seems to be working. Haydn has evolved from the skinny little aspie marshmallow boy that he once was, into a 100mph Tasmanian Devil, who climbs, jumps, and swings on everything. I'm sure that the majority of his improvements have come from the professionals who work with him in school, but I like to try to find fun and silly ways to sneak O.T. into his life. I figure he can never have too much practice.
But there is one element of this SPD madness that is more tenacious and more problematic than all of the other symptoms put together. Every time Haydn beats it down, it pops up somewhere else. It is like the Terminator of sensory issues, relentlessly hunting Haydn down, everywhere, at any time. It will not stop coming after him.
HAYDN'S EARS
This sensory issue is the big one. It is the source of an incredible amount of anxiety in his life. It causes problems everywhere. His ears used to destroy entire days when he was younger. Believe it or not, there was a point in his life when he was unable to enjoy trips to the mall. He would fall apart as soon as I brought him into a room with a lot of people. Their voices would rattle around in his little head, and drive him to tears. He would break out in a cold sweat, and his heart would practically explode out of his chest.
In fact, when he was little, way back in the earliest days of 'Operation Mallrat,' I took him to one of the big malls for the first time, and things went terribly wrong. As soon as we walked in, I could tell that he was tense. He was sitting in his jog stroller with his legs locked straight out in front of him, his hands over his ears and his eyes on fire. The place was packed, noises coming from all around, kids, adults, cell phones, music, you name it. I took him out of the stroller and picked him up to try to calm him. Bad idea. He threw his arms and legs all over, and thrashed around violently. He headbutted me a couple of times, gave me fat lip, and bit me on the cheek.
Not a particularly amazing start to our morning.
So, I took him back to the car, calmed him down, and took him home. The next day we went back, this time before the stores opened, and walked some laps as the place filled up. Much easier. A little lesson about moderation for Daddy-o. Always better to start in the shallow water first.
Once we established better communication between one another, I had Haydn sit in a booth at Dave and Buster's and tell me all the things that he could hear. He pointed to people all over the room, the video games, the ceiling fans over the bar, even the air conditioning ducts hanging from the ceiling.
I didn't believe him, so I had him make the different sounds of everything he heard.
He was telling the truth. Everything in the room seemed to be coming at him at about the same volume. He was hearing EVERYTHING clearly.
I decided that the best way for me to help Haydn deal with this mess would be for me to find a way to experience it myself. So, I tried an experiment. I sat at the computer and put a DVD in. I turned on the TV, and put one Ipod ear-bud in my ear and cranked the music. Then I tried to watch the movie on the computer. I spent about fifteen minutes like this, and it gave me vicious headache. Only three sources of stimulation, and I almost lost my mind. Try it sometime. Then multiply that times about fifty, and that is probably similar to what Haydn puts up with every time we go to the mall.
We have spent, and continue to spend hours upon hours working on his ears. It's almost a daily occurrence. We have faced down all types of hand dryers in bathrooms (and still do), crashed through large, public places (Central Park, Times Square, The Bronx Zoo, professional sports games, etc.), and battled our way through wild kid-crazy places like Chuck E. Cheese's or school dances. It was a little messy in the early days, but it all worked out in the end. He loves to get out with the people. The crazier the environment. the better. I don't know how he does it.
The tricky part of the equation is the unpredictability of what his ears will find troubling next. There is no predicting what the next sensory issue is going to be. I can find no rhyme or reason to any of them. They may be something we've never encountered before, or an old issue that decides it's time to wake-up and crash the party (Grandma's doorbell, The Abominable Carousel, etc,).
The new ones are identified, and we try to find the best way to deal with them.
The old ones, however, don't get as much compassion.
O.C.D., or any kind of predetermined melodrama unrelated to the situation at hand, is not allowed in Haydn's World.
ºSensory Processing Disorder - The Boomerang Effect...
When Haydn starts reacting to an old sensory issue, the problem is usually caused by the action going on BETWEEN his ears, not by anything that is going IN the ears. An old issue boomerangs back at him, and is often more disruptive than it was the first time.
For example...
Haydn has decided that the little dogs (dogs that he has known his entire life) at Grandma's house are now going to be an issue. He constantly checks the front door, anticipating a doorbell that will set off some barking. He hangs back at the entrance to the family room, lingering in the doorway, because the dogs sleep in the mudroom right next to the family room, and they MIGHT bark. Which MIGHT hurt his ears. When he finally enters the room, it's a full sprint to the coffee table for a chip, and right back out of the room (his focus always on the mudroom). Today is the day it all has to end. He needs to relax. He needs to put an end to this behavior, and he is going to do it today.
I wait for him to go into the bathroom, and when he is finished, I knock on the door and walk in.
"Haydn, why won't you come into the family room?"
"The dogs are loud, Daddy-o."
"Do you hear any dogs right now?"
"No sir."
"Do you even SEE any dogs right now?"
"I do not Daddy-o."
"Then why are you hiding in the dining room?"
"I don't know why. I have no answer for you. I think maybe the dogs are loud."
"Here is what you need to know. You are taking a very small thing, and making it into a big thing."
"I'm sorry Daddy-o."
"Don't be sorry. You're not doing anything wrong. The source of your problem is not coming from here." I put my hands on his ears.
"The source of your problem is coming from in here." I put my hands on the top of his head.
"You are thinking too much. You ONLY have to deal with what you SEE, and what you HEAR. You let me worry about everything else."
"OK, Daddy-o."
"Calm down for a few minutes. Turn off that dog stress, and just let your ears and your eyes be the boss. Not that super-powered brain of yours. No more thinking."
"OK, Daddy-o. I am very tough."
"Yes, you are. Just come out when you are ready. I'll see you in a few minutes."
I hear Haydn taking deep breaths through the door. It sounds like he might even be singing in there. Time for Daddy-o to go into the family room and stuff some more food in his face. Haydn's going to be fine.
A few minutes later, he runs into the family room with a big smile on his face, and starts a pillow/tickle fight with Grandma.
I don't know what he was thinking about or what he was singing in the bathroom. Haydn did what HE needed to do, to 'beat the room.'
And he did all by himself.
I would love for Haydn to be able put an issue out of his mind forever after a success like he had today. But, unfortunately that just doesn't seem to be the case right now. I just hope that if, and when, these old issues decide to reappear, he will be able to recognize them for what they are and take control of the situation faster and more easily every time.
It's an awful lot for a little boy to handle. I would give anything, and do anything to make this madness stop. But that just isn't going to happen. Sensory Processing Disorder is here to stay.
Unfortunately, Haydn has a body and mind that are not always cooperative.
But luckily for him...
Haydn is Haydn.
And Haydn is tough.
Just ask him
And Haydn is brave.
Just watch him
And Haydn can do anything.
Just wait and see
Did you hear that noise?
Probably not.
You resume your conversation and after another minute or so, Haydn flinches again. His eyes dart around the mall. Clearly, he's looking for something.
Didn't hear that one either?
Well, that noise you don't hear, is very distracting to Haydn, and will continue to buzz in his ears during the rest of your conversation. Everything you say to him, everything he watches or sees is being processed, but that noise that you don't hear, is rattling around inside of his head the whole time, scrambling up the messages going in, and the ones going out.
It could be the fan in the air conditioning ducts up by the ceiling. It could be a ringing cell phone in one of the stores across the mall. It could be a buzzing light bulb in the lighting fixtures. It could be anything.
Listen closely...
Still don't hear it?
Of course you don't. You do not have super-strong hearing like Haydn. You do not have to deal with Sensory Processing Disorder like Haydn. And you're lucky.
ºIntroducing, Stooge #2 (Sensory Processing Disorder)
It's time to talk about Asperger Syndrome's idiot friends, The Three Stooges of Co-morbidity, once again.
They are Obsessive Compulsive Disorder, Sensory Processing Disorder, and Pragmatic Language Disorder. These annoying little bastards have piggy-backed their way into Haydn's life with his Asperger Syndrome diagnosis, and cause nothing but problems.
Sensory Processing Disorder is when your senses seem to act with a mind of their own. And that mind is bi-polar, with no attention span, and a bad attitude. It lets sensory information in when you don't want it, blocks things from coming out when you really need them, and sends sensory messages all over your overworked and over-stimulated mind, whenever it wants to - and it usually sends them to all the wrong places. It constantly causes a ruckus inside your body and mind, making everything more difficult than it should be, complicating the simplest of tasks, making your life a constant war with yourself and the environment.
Or, if you happen to be a textbook definition, type of person...
Sensory Processing Disorder (SPD) is a condition that exists when sensory signals don't get organized into the appropriate responses. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the condition is not treated effectively.
Sensory Processing Disorder is unlike anything thing I've ever encountered in my life. If I did not see it's disruptive effect on Haydn's life every day, I would have a hard time buying into it the whole concept. It can affect EVERYTHING and ANYTHING in your life. ANYTHING. The damn thing turns up everywhere.
Imagine what it would be like, if the sound, smell, sight, and texture of just about everything in the world distracted, irritated, and annoyed you. Always. No matter what. Forever. If the simple act of using a fork, or writing your name, or running and skipping, became a challenge. A challenge that required hours of therapy and repetition to gain a somewhat passable mastery of these skills. Your clothes constantly irritate your skin, until you want to rip them right off of your body. Your arms and legs, have trouble working in synch with one another, making you very clumsy and awkward. Your ears are so sensitive that even the smallest background noise rips through your head like a freight train. You hear every voice and noise in the room at the same time, and at THE EXACT SAME VOLUME.
ºSeekers and Avoiders
According to the experts, when you are a sensory super-freak like Haydn, you may be one of two types. A Seeker or an Avoider.
For example...
*See that package of diapers on the shelf over there?
You absolutely MUST run over and touch it. It just has to be done. You've been told not to do it, but you are compelled to put your grubby little mitts all over these diapers. Pressing your fingers against it, you revel in the smoothness, the crinkly noises of plastic on Pampers tingles your ears, and you press your face into the package, inhaling it's powdery freshness.
You are a SEEKER.(Your senses are hyper-reactive. You need constant stimulation...)
* You are sitting on the couch watching TV. Mommy sits down next you. She puts her arm around you gently while you watch. You grab her arm, and not so gently put it on the couch next to you. Every time she tries to hug or snuggle, you move her arm way, and eventually get up and leave the room.
You are not a little turd, you are an AVOIDER. (Too much stimulation can be very distracting, cause anxiety, or even physical discomfort...)
Haydn loves to grab, touch, bump into anything and everything he can get near. He is a Seeker. (No Harry Potter jokes, please...) When you sit next to him, he will (if you let HIM initiate it), scoot right over and wedge himself against you, throwing an arm or a leg over the top, often putting his head right on your chest.
Rather SEEKER-ish, wouldn't you say?
Then, for no apparent reason, an alarm seems to go off in his head and he throws your arms off, and pushes you away. Other times (usually when someone else initiates contact), he will grab your arm, and move it away, scooting as far away from you as he can. He does not want you to touch him. A little AVOIDER in there too. It's not often, but it can get pretty extreme when Mr. AVOIDER shows up.
You're probably saying to yourself:
This guy's nuts... That sound like something any six year old boy would do.
You're right. It is.
However...
Just because Haydn is doing what every other kid is doing, does not mean that he is doing it for the same reason.
I am always more concerned with finding the cause of Haydn's more quirky behaviors above all else. Once we find the cause, we move on to the behavior. We will try to help him find a way to control himself. (Preferably without jumping through the ceiling)
He could be exhausted, which leads to a major dip in self control. He could be stressed out about something in the room (or something he's thinking about), or it could simply be an overly stimmed-out environment that is frying his little neurons, and some tactile stimulation is what he needs to help get himself grounded a bit. No problem. We can figure out a way to work it out. As annoying and distracting as the sensory issue may be, sometimes the coping behavior is just as distracting. If he starts jumping and spinning and flapping, getting all Stiminy Cricket because he can't deal with something in the room, he may never get to relax, enjoy himself, or simply finish whatever he may have intended to do. And it's very important that Haydn work out as many of the solutions to these situations himself as possible.
Haydn will never be a victim of his environment. There is always a way to 'beat the room.'
Haydn dictates what he can and can not do. He determines what he will and will not enjoy... not his environment.
ºTime for a Wardrobe Change...
SPD seems to have an impact on everything in Haydn's life. Even his wardrobe. Certain types of fabrics really irritate Haydn's skin. He has very sensitive, very fair skin. He's so fair skinned, he's almost clear. Tight clothes? Not going to happen. Collared shirts? Also not happening (for now). He can't put one on without constantly fondling the collar - pulling and tugging at it incessantly, trying to keep it off of his skin. It doesn't seem cause any physical problems like some of the other types of shirts. It just annoys the heck out of him. So, we will be re-introducing the collared shirt this spring.
Should be fun...
Very bright colors (at least according to Haydn) give him a headache, so he likes to keep a more neutral tone to his outfits. Browns, grays, blues, etc.... which I don't see as being a problem. I think he will survive if he never wears a day-glo Hawaiian shirt to school. Jammies left the building years ago, and I don't see them coming back any time soon (too tight).
ºSee Haydn Run (or - Woody, I presume... )
Haydn has a slightly offbeat sense of proprioception.
Proprioception is the sense of the relative position of neighboring parts of the body and strength of effort being employed in movement.
Just in case you didn't know...
It makes his limbs appear to be either very heavy, or loose and rubbery, depending upon what he us trying to do. (Sometimes he turns corners a little too tightly, bumps into things, knocks stuff over, etc.). When he was a baby, he was an average crawler, slightly above average cruiser, and walked like a drunken sailor. A little quirky along the way, perhaps, but nothing that really caught our attention.
We began to notice that something unusual was happening with Haydn's coordination when he started to move around with a little more speed. He developed a rather unique running style. When Haydn ran, his arms and legs acted as though they wanted to go off in four different directions - flopping and flapping all over the place. It was like someone cut the strings and the puppet was making a run for it.
He ran like Woody from Toy Story.
Watch the movie. See Woody run? That was Haydn.
Some running-form drills at the track tightened things up a little, but when he gets a good head of steam going, things can get a little loose, and Woody reappears. He still gets a little jumpy, Stiminy Cricket move going when he's in a heightened sensory environment. Sometimes that little body just has to move. He jumps and spins. Flapping his hands, and shaking his arms and legs around. And when he really starts a-hoppin', it looks to me like he's trying to make sure that all of his parts are still attached.
Still a bit of a work in progress... But he's getting there.
Haydn receives Occupational Therapy twice a week in school, (and has for about three years) where he works on his SPD and other physical challenges. They have helped him learn to sit properly, work those damn utensils better, color with crayons, work buttons and zippers, many important life skills that he just couldn't master an his own.
I learned a little about a certain theory that asserts that there may be a lack of communication between the different sides of Haydn's body (thank you Mr. Saxon) that gives a herky-jerky look to some of his movements. It is like there is an invisible cross that divides his body into quadrants. And the right and left sides, top and bottom, and diagonally connected sections don't work very well together. The lines of communication need to be established and strengthened. I've lived with this kid for six year, and I believe that there is real validity to this particular line of thinking.
So I try to get Haydn to work on simple movements that require his reaching across the body, crossing this invisible barrier. Right hand to left pocket. Touch the left foot with the right hand. I put his glass on the wrong side of his dinner plate, so he has to reach across to grab it. Little changes to his normal physical maneuvers.
Constantly shaking things up. Constantly annoying him.
We also do some improvised O.T. together. We go to the track, and shuffle from side to side along the lane lines, do some bear crawls, and a lot of jumping jacks. Hopping, skipping, anything I can think of - trying to get multiple muscle movements, and cross-body movements going. We even practice walking. Keep the arms 'low and slow,' relaxed wrists, arms in a little tighter. Anything that looks a little disconnected, gets a workout.
And it seems to be working. Haydn has evolved from the skinny little aspie marshmallow boy that he once was, into a 100mph Tasmanian Devil, who climbs, jumps, and swings on everything. I'm sure that the majority of his improvements have come from the professionals who work with him in school, but I like to try to find fun and silly ways to sneak O.T. into his life. I figure he can never have too much practice.
But there is one element of this SPD madness that is more tenacious and more problematic than all of the other symptoms put together. Every time Haydn beats it down, it pops up somewhere else. It is like the Terminator of sensory issues, relentlessly hunting Haydn down, everywhere, at any time. It will not stop coming after him.
HAYDN'S EARS
This sensory issue is the big one. It is the source of an incredible amount of anxiety in his life. It causes problems everywhere. His ears used to destroy entire days when he was younger. Believe it or not, there was a point in his life when he was unable to enjoy trips to the mall. He would fall apart as soon as I brought him into a room with a lot of people. Their voices would rattle around in his little head, and drive him to tears. He would break out in a cold sweat, and his heart would practically explode out of his chest.
In fact, when he was little, way back in the earliest days of 'Operation Mallrat,' I took him to one of the big malls for the first time, and things went terribly wrong. As soon as we walked in, I could tell that he was tense. He was sitting in his jog stroller with his legs locked straight out in front of him, his hands over his ears and his eyes on fire. The place was packed, noises coming from all around, kids, adults, cell phones, music, you name it. I took him out of the stroller and picked him up to try to calm him. Bad idea. He threw his arms and legs all over, and thrashed around violently. He headbutted me a couple of times, gave me fat lip, and bit me on the cheek.
Not a particularly amazing start to our morning.
So, I took him back to the car, calmed him down, and took him home. The next day we went back, this time before the stores opened, and walked some laps as the place filled up. Much easier. A little lesson about moderation for Daddy-o. Always better to start in the shallow water first.
Once we established better communication between one another, I had Haydn sit in a booth at Dave and Buster's and tell me all the things that he could hear. He pointed to people all over the room, the video games, the ceiling fans over the bar, even the air conditioning ducts hanging from the ceiling.
I didn't believe him, so I had him make the different sounds of everything he heard.
He was telling the truth. Everything in the room seemed to be coming at him at about the same volume. He was hearing EVERYTHING clearly.
I decided that the best way for me to help Haydn deal with this mess would be for me to find a way to experience it myself. So, I tried an experiment. I sat at the computer and put a DVD in. I turned on the TV, and put one Ipod ear-bud in my ear and cranked the music. Then I tried to watch the movie on the computer. I spent about fifteen minutes like this, and it gave me vicious headache. Only three sources of stimulation, and I almost lost my mind. Try it sometime. Then multiply that times about fifty, and that is probably similar to what Haydn puts up with every time we go to the mall.
We have spent, and continue to spend hours upon hours working on his ears. It's almost a daily occurrence. We have faced down all types of hand dryers in bathrooms (and still do), crashed through large, public places (Central Park, Times Square, The Bronx Zoo, professional sports games, etc.), and battled our way through wild kid-crazy places like Chuck E. Cheese's or school dances. It was a little messy in the early days, but it all worked out in the end. He loves to get out with the people. The crazier the environment. the better. I don't know how he does it.
The tricky part of the equation is the unpredictability of what his ears will find troubling next. There is no predicting what the next sensory issue is going to be. I can find no rhyme or reason to any of them. They may be something we've never encountered before, or an old issue that decides it's time to wake-up and crash the party (Grandma's doorbell, The Abominable Carousel, etc,).
The new ones are identified, and we try to find the best way to deal with them.
The old ones, however, don't get as much compassion.
O.C.D., or any kind of predetermined melodrama unrelated to the situation at hand, is not allowed in Haydn's World.
ºSensory Processing Disorder - The Boomerang Effect...
When Haydn starts reacting to an old sensory issue, the problem is usually caused by the action going on BETWEEN his ears, not by anything that is going IN the ears. An old issue boomerangs back at him, and is often more disruptive than it was the first time.
For example...
Haydn has decided that the little dogs (dogs that he has known his entire life) at Grandma's house are now going to be an issue. He constantly checks the front door, anticipating a doorbell that will set off some barking. He hangs back at the entrance to the family room, lingering in the doorway, because the dogs sleep in the mudroom right next to the family room, and they MIGHT bark. Which MIGHT hurt his ears. When he finally enters the room, it's a full sprint to the coffee table for a chip, and right back out of the room (his focus always on the mudroom). Today is the day it all has to end. He needs to relax. He needs to put an end to this behavior, and he is going to do it today.
I wait for him to go into the bathroom, and when he is finished, I knock on the door and walk in.
"Haydn, why won't you come into the family room?"
"The dogs are loud, Daddy-o."
"Do you hear any dogs right now?"
"No sir."
"Do you even SEE any dogs right now?"
"I do not Daddy-o."
"Then why are you hiding in the dining room?"
"I don't know why. I have no answer for you. I think maybe the dogs are loud."
"Here is what you need to know. You are taking a very small thing, and making it into a big thing."
"I'm sorry Daddy-o."
"Don't be sorry. You're not doing anything wrong. The source of your problem is not coming from here." I put my hands on his ears.
"The source of your problem is coming from in here." I put my hands on the top of his head.
"You are thinking too much. You ONLY have to deal with what you SEE, and what you HEAR. You let me worry about everything else."
"OK, Daddy-o."
"Calm down for a few minutes. Turn off that dog stress, and just let your ears and your eyes be the boss. Not that super-powered brain of yours. No more thinking."
"OK, Daddy-o. I am very tough."
"Yes, you are. Just come out when you are ready. I'll see you in a few minutes."
I hear Haydn taking deep breaths through the door. It sounds like he might even be singing in there. Time for Daddy-o to go into the family room and stuff some more food in his face. Haydn's going to be fine.
A few minutes later, he runs into the family room with a big smile on his face, and starts a pillow/tickle fight with Grandma.
I don't know what he was thinking about or what he was singing in the bathroom. Haydn did what HE needed to do, to 'beat the room.'
And he did all by himself.
I would love for Haydn to be able put an issue out of his mind forever after a success like he had today. But, unfortunately that just doesn't seem to be the case right now. I just hope that if, and when, these old issues decide to reappear, he will be able to recognize them for what they are and take control of the situation faster and more easily every time.
It's an awful lot for a little boy to handle. I would give anything, and do anything to make this madness stop. But that just isn't going to happen. Sensory Processing Disorder is here to stay.
Unfortunately, Haydn has a body and mind that are not always cooperative.
But luckily for him...
Haydn is Haydn.
And Haydn is tough.
Just ask him
And Haydn is brave.
Just watch him
And Haydn can do anything.
Just wait and see
Related Articles:
-
{ image source } Does your child with Aspergers Syndrome have difficulties with their fine and... Read Full Story » -
If you have found this page you are probably trying to find more information about The Parenting... Read Full Story » -
Stephanie Pappas of LiveScience wrote and excellent article that is troubling at times to... Read Full Story »
Comments
