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Sensory Processing Issues Explained: Tantrums, clumsiness, ‘immaturity’ all could point to problems taking in the world

December 2, 2011 Leave a comment

Beth Arky is a writer at the Child Mind Institute, with a focus on autism spectrum disorder.  She has written extensively about the Asperger’s storyline on Parenthood andAmerican Idol’s James Durbin, diagnosed with both Asperger’s and Tourette’s syndrome.

Before writing for CMI, Arky was an editor at Entertainment Weekly and TV Guide. She has also written for People, the New York Daily News and USA Weekend, which featured her roundtable with the late Dr.Stanley Greenspan and singer Laurie Berkner on the importance of music in child development.

It looks as though I have finally met my match when it comes to word count! Don’t let the length intimidate you, though – every word is worth reading. My sincere thanks to Beth for sharing with us her fantastic gift and this comprehensive overview of SPD!

Sensory Processing Issues Explained: Tantrums, clumsiness, ‘immaturity’ all could point to problems taking in the world

When Jill went hunting for new shoes for her 6-year-old daughter, Katie, it wasn’t a simple question of finding the cutest pair in her size. While the second-grader doesn’t have wide feet, Jill learned the hard way that Katie needs a really wide toe box because “if she feels things are constricting at all, we’re done.” And because her daughter has balance issues that make her prone to tripping and falling, Jill looks for soles that aren’t too smooth, thick or clunky, with a rubber toe that won’t wear out quickly. 

Not long ago, mothers in Jill’s shoes might have been frustrated by what they’d likely have perceived as a “difficult, clumsy” little girl. But that wasn’t the case. Instead, Jill posted a distress signal on Facebook: “help! kid with sensory issues!” She also enlisted a friend who blogs about special needs and her 8-year-old son. The pair got a total of 43 responses. When Jill made her final online purchase, she shared her triumph as if it she’d snagged the Golden Fleece.

All the moms who answered Jill’s call are well-versed in sensory issues like Katie’s, which often are recognized during the toddler years, as parents observe an unusual aversion to noise, light, shoes that are deemed too tight and clothes that are irritating. They may notice clumsiness and trouble climbing stairs; and difficulty with fine motor skills like wielding a pencil and fastening buttons.

More baffling—and alarming—to parents are children who exhibit extreme behaviors: screaming if their faces get wet, throwing violent tantrums whenever you try to get them dressed, having an unusually high or low pain threshold, crashing into walls and even people, and putting inedible things, including rocks and paint, into their mouths. These and myriad other atypical behaviors may reflect sensory processing issues—children who are overwhelmed because of their difficulty integrating information from their senses. It’s often called Sensory Processing Disorder, or SPD, although it’s not recognized by the psychiatrists’ bible, the Diagnostic and Statistical Manual.

Sensory issues received widespread attention earlier this month with the autism- and sensory-friendly staging of Broadway’s The Lion King, in which potentially over-stimulating and distressing lights were dimmed and noise subdued. As one mom noted, after her son froze at the door to the theater—even though he’d been preparing for weeks—”My husband equates it to excitement times 100, so that it is no longer exciting but becomes incredibly overwhelming to the point of being a nightmare for him.”

In fact, SPD and autism spectrum disorder are often thought of in tandem because the majority of children and adults on the autism spectrum also have significant sensory issues. However, most children with SPD are not on the spectrum. It can also be found in those with ADHD, OCD and other developmental delays—or with no other diagnosis at all. In fact, a 2009 research study suggests that 1 in every 6 children has sensory issues that impede their daily functioning, socialization and learning. It isn’t hard to see how these types of challenges could lead to a child feeling anxious and depressed.

A toddler who covers her ears at the sound of a fire truck’s siren or a second-grader who insists that all the tags be cut out of his clothes may have auditory or tactile sensitivities. But unless these sensitivities seriously interfere with their lives, they don’t have SPD.

What parents often notice first is odd behaviors and wild mood swings, strange at best, upsetting at worst. Often it’s an outsized reaction to a change in environment—a radical, inexplicable shift in the child’s behavior. For instance, a first-grader may do fine in a quiet setting with a calm adult. But place that child in a grocery store filled with an overload of visual and auditory stimulation and you might have the makings of an extreme tantrum, one that’s terrifying for both the child and parent.

“These kids’ tantrums are so intense, so prolonged, so impossible to stop once they’ve started, you just can’t ignore it,” notes Nancy Peske, whose son Cole, now 12, was diagnosed at 3 with SPD and developmental delays. Peske is coauthor with occupational therapist Lindsey Biel, who worked with Cole, of Raising a Sensory Smart Child.

Another response to being overwhelmed is to flee. If a child dashes out across the playground or parking lot, oblivious to the danger, Peske says that’s a big red flag that he may be heading away from something upsetting, which may not be apparent to the rest of us, or toward an environment or sensation that will calm his system. This “fight-or-flight response is why someone with SPD will shut down, escape the situation quickly, or become aggressive when in sensory overload,” she says. “They’re actually having a neurological ‘panic’ response to everyday sensations the rest of us take for granted.”

There are some theories that kids on the spectrum who wander are often attracted to water because it offers input they crave, too often with deadly results. “Not all sensory kids do this,” Peske says, “but most gravitate toward the sensations and environments they find calming or stimulating. Their self-regulation is not great, so safety takes a back seat to their need to get that input or that calming experience of being in water.”

The tendency of children on the autism spectrum to wander off impulsively is a huge safety issue for parents. A new medical code may improve understanding and handling of this high-risk behavior. READ MORE

Children, teens and adults with SPD experience either over-sensitivity (hypersensitivity) or under-sensitivity (hyposensitivity) to an impairing or overwhelming degree. The theory behind SPD is based on the work of occupational therapist Dr. A. Jean Ayres. In the 1970s, Dr. Ayres introduced the idea that certain people’s brains can’t do what most people take for granted: process all the information coming in through seven—not the traditional five—senses to provide a clear picture of what’s happening both internally and externally.

Along with touch, hearing, taste, smell and sight, Dr. Ayres added the “internal” senses of body awareness (proprioception) and movement (vestibular). When the brain can’t synthesize all this information coming in simultaneously, “It’s like a traffic jam in your head,” Peske says, “with conflicting signals quickly coming from all directions, so that you don’t know how to make sense of it all.”

What are these two “extra” senses in Dr. Ayres’ work?

Proprioceptive receptors are located in the joints and ligaments, allowing for motor control and posture. The proprioceptive system tells the brain where the body is in relation to other objects and how to move. Those who are hyposensitive crave input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs. If they’re hypersensitive, they have difficulty understanding where their body is in relation to other objects and may bump into things and appear clumsy; because they have trouble sensing the amount of force they’re applying, they may rip the paper when erasing, pinch too hard or slam objects down.

The vestibular receptors, located in the inner ear; tell the brain where the body is in space by providing the information related to movement and head position. These are key elements of balance and coordination, among other things. Those with hyposensitivity are in constant motion; crave fast, spinning and/or intense movement, and love being tossed in the air and jumping on furniture and trampolines. Those who are hypersensitive may be fearful of activities that require good balance, including climbing on playground equipment, riding a bike, or balancing on one foot, especially with eyes closed. They, too, may appear clumsy.

To help parents determine if their child’s behavior indicates possible SPD, Peske and Biel have created a detailed sensory checklist that covers responses to all types of input, from walking barefoot to smelling objects that aren’t food, as well as questions involving fine and gross motor function, such as using scissors (fine) and catching a ball (gross). The SPD Foundation also offers a litany of “red flags.” The list for infants and toddlers includes a resistance to cuddling, to the point of arching away when held, which may be attributed to feeling actual pain when being touched. By preschool, over-stimulated children’s anxiety may lead to frequent or long temper tantrums. Grade-schoolers who are hyposensitive may display “negative behaviors” including what looks like hyperactivity, when in fact they’re seeking input.

At first, SPD parent blogger Hartley Steiner couldn’t understand why her son Gabriel’s psychologist suggested that he had SPD; after all, he didn’t fit the avoidance profile most people think of when they hear “sensory issues”—kids who cover their ears or won’t try new foods. As she wrote in her blog, Gabriel was “fine with loud noises, loved water, mud, hot salsa,” Steiner says. “He would climb to the tippity top of a play structure—and stand on top of it. No, my kid was not at all adverse to sensory stimuli—as a matter of fact, he couldn’t get enough.”

It took a year, and reading Carol Stock Kranowitz’s seminal book, The Out-of-Sync Child, for Steiner to realize there are two types of kids with SPD: sensory seekers and sensory avoiders. Those like Gabriel, who seek input, “are often considered ‘behavior problems,’ ‘hyperactive,’ ‘difficult,’ ‘stubborn,’ ‘coddled.’ Many of us parents have been blamed, told our kids need more discipline, or that they are ‘in need of a good spanking.'” Those who perceive things too intensely are avoiders; this can translate into refusing to brush their teeth or have their faces painted. To make things even more complicated, kids can be both seekers and avoiders and have both proprioceptive and vestibular challenges, along with issues relating to the traditional five senses.

Peske sums up the way sensory issues can affect kids this way: “If you’re a child who is oversensitive to certain sensations, you are not only likely to be anxious or irritable, even angry or fearful, you’re likely to be called ‘picky’ and ‘oversensitive.’ If you rush away because you’re anxious or you’re over-stimulated and not using your executive function well because your body has such a powerful need to get away, you’re ‘impulsive.’ If you have trouble with planning and executing your movements due to poor body awareness and poor organization in the motor areas of the brain, you’re ‘clumsy.’ Because you’re distracted by your sensory issues and trying to make sense of it all, you may be developmentally delayed in some ways, making you a bit ‘immature’ or young for your age.”

Amid this confusion, there may be relief for more than a few parents in recognizing what maybe causing otherwise inexplicable behavior. “When I describe sensory issues to parents whose kids have it,” Peske says, “the usual reaction is ‘Oh, my gosh, that’s it!’ They’ve been trying to put a finger on ‘it’ for many months, even years! The sense of relief that they finally know what ‘it’ is is humongous.”

Monday Minute: The Shoes and the Sockless

November 21, 2011 Leave a comment

After an intensely busy Monday the pressure is on to finish the Monday Minute on Monday. Let’s see how many more times I can fit Monday into a sentence, right?

I’m beginning to think that the Monday Minute series is really my therapy through comic relief. The following conversation, while somewhat humorous, is a painfully all-too-familiar routine 4+ mornings a week:

My responses are in bold italics. Ryan’s remarks are in bold. James is in italics.

————————————————

Setting: getting ready to go after breakfast – brushing teeth mercifully done.

Okay James go get your socks on. What? Get your socks on. Ohhhhhhhhh. Hurry up and put one on your foot. 

James, put your sock on your foot. (muttering in a soft voice):blahblah. What? James. socks. blahblahblah. James. blah. 1….blah….2…..blah…. 3……blah. Okay – strike 1 against Wii time. No. You need to stop talking back right now. Don’t get more strikes. I hate when you’re bothering me. What? I hate it. Get your shoes on.

(stomps over to hall and gets shoes, slams shoes down on the floor) Just boring. boring. boring.

(Ryan) Stop making unpleasant noises at your mother. (very quietly to self): not even doing anything. James. Mom, he said I’m doing something and I’m not.

(repeats in falsetto): Mom, he said I’m doing something and I’m not. Why are you talking like that? Are your shoes on?

I’m getting them on. (repeats in falsetto): I’m getting them on.

Are they on?

Are they on?

James – mm-hmm. Okay go get a jacket on. Can I bring Diary of A Wimpy Kid? Okay, but get a jacket. Diary of a Wimpy Kid? Ok. 

(flicking closet light on and off)

James – coat. backpack. go. 

2 minutes later

James, is your coat on? Yes. hi dad. Hi James. Hi dad. Hi James. Hi dad. Stop, okay. Oh good grief. gooood grief. good grief. goood.

Grief. Mom would you help me zip? Sure, come here. So I need a travel mug of coffee for the way. What? a travel mug. No. you just brushed your teeth. how about a big kiss then? Okay. Yuck. What? Your lotion is on your face. gross.

James put your backpack on and go down to the lobby. backpack backpack. backpack backpack backpack. (swishswishswishswish) Ryan: James, what are you doing? (to me): Is it the floppy sleeves? No, it’s the swishing noise. What? The swishing of the material – he’s freaking out. (James continues to spastically swish his sleeves together)

(to Ryan): Have fun walking to school with that jacket.

Okay, mom! 

Since we’re still here…

I’ll tell you about what we actually did this past weekend.

Friday I took all 3 kids to a party after James got out of school. It was at the kids’ club where my daughter takes ballet and gymnastics, some Friday Family fun night they have every other week. It was supposed to be for ages 6 months to 6 years but I explained my situation with James to the manager and very sweetly she said he could come too.

I was a little nervous bringing him, though I couldn’t put my finger on why. I am comfortable discussing James’s disability and am an open book re: his diagnosis and special needs. He is also very well behaved for the most part and loves to play with younger children – it should all work out, right?

I think it was the other kids. Adults have a filter when discussing your very tall, obviously way too old to be here, talkative, anxious, disabled child. Most of them know what to say, what is okay to ask about, and most importantly, what not to say (“Um, is there a reason your son is hiding behind the pillar crying while Roly Poly Guacamole plays the guitar and sings Baa Baa Black Sheep?” or “Hey, I think your son is crying again because that toddler threw a ball near him.”) Kids generally haven’t developed a filter yet, which can be refreshing until you’re at the NY Kids Club trying to “protect” your 10 yr old from some pipsqueak who is calling him mean because “he is playing with all of the red balls out of the ball pit and he won’t let me throw them back in the ball pit” and not using an indoor voice and his nanny is on her cell phone looking at you like “Hey, take care of it- your much older kid is the problem” and all you want is for the pipsqueak to stop talking so loudly and for James to stop whimpering about “he took my ball” so that you can make sure your toddler isn’t going to flip right off of the trampoline she is jumping on with reckless abandon across the room.

Then, Roly Poly Guacamole played. Two guys with a bass and a guitar singing lots of kids’ songs – my daughter adored them and sang and danced right up front the entire time. The lead singer reminded me of Jack Black from School of Rock, a movie James likes a lot, so I thought he would probably be okay for the “concert,” a.k.a. 30 minute rendition of childrens’ songs with 1 tiny little amp, 2 guys with guitars and about 20 kids and their caretakers. Not exactly Madison Square Garden.

Nope. One song in, I think it was “Itsy Bitsy Spider,” and I look over to see James silently but dramatically crying about 3 feet away from the bass guitarist and about 6 inches away from pipsqueak #2 who is pointing James out to his mom and drawing the attention of the performers as well. I whispered to James that he could sit in the back with a book (“No, that’s not allowed!”) or wait in the waiting room 10 feet away (“But Mom, it’s too far!”) if the music was upsetting him. James opted for taking the fetal position behind a pillar about 2 feet away and occasionally peeking out to make sure I knew he was still crying about each song, especially the ones where they had to jump up and yell “Yeehaw!” as loud as they could. My 2 year old remained blissfully oblivious to James’s distress and my 7 month old nursed and slept through the whole thing.

The second the music ended, James hopped up with a smile and said “That music was good. I had fun. I’m ready for pizza!” and walked to the pizza room with the other kids. In the pizza room, which serves as a dance studio during business hours, there were 3 tables set up with slices of pizza and tiny little chairs. Great, I thought, where is James going to sit without feeling awkward or nervous? Next to my daughter, of course. My gentle giant sat with all of the teeny tiny 1 and 2 year olds on a teeny tiny chair at a teeny tiny table and ate his slice of pizza, completely oblivious to the fact that he was the biggest by a solid 75 pounds and 7 years.

Saturday my husband was home, which is a rare occurrence lately, so we started the day off plus one for the good guys. We ended up at the “beach” at South Street. Here my toddler ran wild in the sand, trying to steal other children’s toys or share handfuls of sand with adults drinking very expensive drinks from clear plastic cups on those white “couches” on the “beach.” Here was James’s chance to shine! He lay in the sand with some modified sand toys – a plastic teething ring, a small rubber hippo, and a brio train with a tiny wooden bucket – and played contentedly for the entire time, only pausing from his bliss to tell us when his sister threw sand in his hair, twice. Wait, thrice. Later, we toured the Peking (the ship next to the mall) and then took James and Margaret to the Ice Cream Truck. I guess we haven’t gone very much this season, because James must have thanked Ryan and I about 30 times before his cone was gone.

Funny thing on Saturday: around 5:50pm we were headed home, coincidentally around The 6pm End of The World, when it suddenly got dark and windy. Did anyone else on the UWS notice that? I bet you were thinking hard about your lists right around then and wishing you had knocked off a few items. We didn’t do my list, but we did get some sand time and good food in there for good measure!

Sunday was baseball at Riverside and of course, the DMF concert I have been writing about for the last 2 months! The concert deserves its own post, and will get one with audio/video highlights as soon as I download “Hershey Love” on itunes and figure out how to share it with all of you. But, long story short for now, it was Awesome (no thanks to some very whiny babies). It was also awesome to see some friendly faces at the 4pm show! I also heard very good things about the 1pm show, especially “Luck Be a Lady” and the Wizard of Oz cast!

I hope you enjoyed some nice weather over the weekend! My blog got a much higher than usual number of hits this weekend, and I couldn’t figure out why until I saw the search terms – about 40 varieties of “end of the world” put into Google.

The weekend is over? What? Nononononononono!

May 16, 2011 1 comment

The reaction seems ridiculous, doesn’t it? The weekend came to an end, just the same as last time. There will be another weekend someday soon, and if I play my cards right it might be even better than the last one.

Okay, now go back and plug in “computer time” or “Wii time” or “Sleep time” or “couch time” in place of the weekend, and also take me out of the equation and plug James in. Then add a shocked expression when the time ran out, a lot of loud pleading then yelling when he realizes there is really no more time, a bunch of stomping that sometimes results in James falling, 5 minutes of timeout and a cherry on top.

Here is a very specific instance that we go through at least  once a week:

6:45AM

Me: “James, you have 5 minutes and then it is time to get dressed.”  James: “Okay.”

6:55AM

Me: “James, just one more minute and it is time to get up.” James: “Okay, just one more minute.”

7:01AM

Me: “James, time to get up. Please go to the bathroom.” James: “One more minute.” Me: “No, it is really time to get up now. Please get up and go to the bathroom.” James: “No. I don’t want to.”

At this point, James usually pulls the covers over his head. I walk over and pull the covers off at which point we have a short tug-of-war. I win, to which James responds “Nonononononono” at an incredible volume considering he is so tired. I pull James up out of bed and direct him to the bathroom, the entire time James complaining loudly, “Ow, you’re hurting me” or “No, I’m too tired” or my personal favorite “It’s too hard to listen to you!”  Every time James screams or refuses to take the next step, standing up, going to the bathroom, putting his underwear on, he gets a “strike.” Three strikes and he loses a privilege like playing Wii, watching TV, etc. The punishment sometimes puts an end to the situation, but about half the time results in more volume and more protests. To add to the event the noise often wakes my husband or the baby, neither who are pleased to be woken in this way.

The second example happens at least 3-4 times per week, and usually occurs when we want James to stop doing something – reading, playing video games, watching TV, but can also occur when we want him to start something – take a shower, get dressed, go to the bathroom. James needs a lot of prep leading up to the starts and ends of activities. A LOT. The 5 minute warning equals 10 real-time minutes, the 3 minute warning equals about 5 more and the infamous 1 minute warning equals about 5 more. After every warning, “5 minutes to shower time,” “1 minute until you turn off the computer,” “when you crash, Mario is turned off” James responds sweetly, “Okay, Mom.”

Then I say, “Okay, buddy, time to __________.” James responds, “Almost time?” to which I always say, “No, it’s time now,” to which James replies, “What??!!” And the battle resumes.

Because James is already awake these battles are often less dramatic than the morning routine, though not always. And if you try to get him to do something or stop something with no warnings? I’m sure I am not the only parent of a child on the spectrum that is cringing right now.

Many of you who know or have met James realize that he is not like this most of the time. Some of you probably even think I am exaggerating the above scenarios. Yet many parents who have a special needs child, especially one with a Autism spectrum disorder, know that the Jeckyll/Hyde scenario I am talking about is perfectly possible, even with the sweetest, most well-intentioned child. Each episode beginning to end usually lasts 5-15 minutes, certainly not a long time, but as we all know time can be relative.  After James has thrown this small tantrum or incredible fit and has been punished by losing a privilege or a timeout, he is usually over it. He is no longer “in trouble” and returns to his cheerful self. But the aftershocks – loss of activities for James later in the day, younger children having witnessed or been woken by this behavior, stressed out husband who doesn’t “turn on and off” the way James does. Aftershocks can sometimes do as much damage as the quake itself, even if they just seem like small rumbles at first.

I will be the first to say that in many ways James is a very easy child, and 95% of the time he is pleasant, well-behaved, sweet and happy. But this “scheduling breakdown” was in need of a more permanent repair, so I decided to document my latest attempt, inspired by my husband’s need for peaceful mornings and Nancy Trush.

James sleeps with a lamp on in his room and reads himself to sleep after being tucked in – my husband is a firm believer in sleeping with the lights off, and felt that James was waking up tired because the light was too bright all night. James is not a fan of the dark, so as a compromise I bought a really neat gadget on Amazon, an attachable dimmer that works on any light or lamp in the house. The first night I dimmed his lamp prior to turning it on so that James wouldn’t be able to protest – after all, the lamp itself looks the same. He definitely stared at it suspiciously for a few minutes when I turned on the much softer light and asked that it be moved closer to him, but didn’t seem to know what else to say. 5 days later the dimmer is going strong and James is falling asleep earlier. This past week only 2 days were unpleasant in the morning. Coincidence? Maybe – so I decided to take no chances and pursue the next step of the plan.

As a preschool teacher Nancy has offered me a lot of insight into what works for her 3 and 4 year olds, which is around where James is mentally. For this particular issue she suggested a timer or alarm clock. Genius, I thought! Blame it on the clock, not on the person. But my very next thought was, James will never go for anything that makes sudden noises – especially alarm noises. So, James and I spent some time online looking at cool alarm clocks as a special present – http://www.trendhunter.com/slideshow/fun-alarm-clocks. My husband and I spent some time meanly laughing at the ones that would wake James up the best and probably cause him to remain awake for the next decade (look up the Sonic Boom Alarm clock on youtube), but in the end James picked the one we are going to try. It is a Hot Wheels alarm clock that makes the sound of cars peeling away from the starting line as the alarm noise, and as an extra perk it looks like the back of a hot wheels car too. We were able to watch it together on youtube to make sure James wasn’t going to freak out once it arrived, and now we are ready to implement the rest of the plan.

As with many of my posts, there is not a neat conclusion or a “hey we fixed it!” moment. Yet. These stories usually unfold over the course of a week or a month, or even have come to a head after several years of working on an issue. When the alarm clock gets here it might further help with the scheduling meltdowns we have been working on.