Awesome Guy

Sensory Processing Disorders

It's the reason why Declan wears noise-blocking headphones on the subway and in movie theatres, and leaves noisy birthday parties early (AVOIDING LOUD SOUNDS).  It's the reason he lays his body upside down on the stairs, asks to be held up by his feet, and repeatedly spins around on our office desk chair (SEEKING VESTBULAR INPUT).  It's the reason he eats lots of crunchy foods and avoids lots of smooth, creamy foods (SEEKING AND AVOIDING PROPRIOCEPTION).  It's the reason he cannot see the shoes that are his in the line of family shoes at the garage door, or cannot find the child hiding just their face behind the potted plant during hide and seek (VISUAL DISCRIMINATION).  It's the reason he loves to hurl his body onto the couch or lay under all of the couch's cushions (SEEKING PROPRIOCEPTION), and one of the reasons he insists on putting on and taking of his pants without unbuttoning them (AVOIDING FINE MOTOR PROPRIOCEPTION).  Its also the reason that he ducks away from the brush when we brush his hair (AVOIDING CERTAIN KINDS OF TOUCH).  It is called a sensory processing disorder, and it is now listed in the DSM V under neurological diagnoses.

Declan's Early Intervention OT was the first to introduce us to sensory processing disorders.  Until then, I had never heard of such a thing, and frankly, I was skeptical.  What exactly is it? Why had I never heard of it? It took me years to begin to understand what exactly it is.  Lindsay Biel, author of Raising a Sensory Smart Child, describes it well:

"We all learn through our senses. Sensory processing is how we transform sensory information from within our own bodies and the external environment into messages we can act on. It’s tempting to think of senses (touch, sight, sound, movement, body awareness, taste, and smell) as separate channels of information, but they work together to give us a reliable picture of the world and our place in it.

Right now your senses are working together. You hear background sounds and feel your clothing, chair, and the floor beneath your feet. You resist gravity to stay seated. You see letters on the screen. You filter out unimportant sensory input so you can make sense of what you are reading. If you occasionally lose focus because your shirt label is itchy, you may have a mild sensory issue. If you keep sliding off your chair, look away when you hear any noise, feel like your shirt is hurting you, or the words you are reading pulsate, you may have sensory processing disorder, also known as sensory integration dysfunction. Sensory issues affect all kinds of people—from those with developmental delays, attention and learning problems, autistic spectrum disorders and other diagnoses to those without any other issues."

When Declan's sensory needs are not addressed, he is unable to focus.  Think of it as being so cold that you cannot concentrate or do your work until you do something to change that condition.  That is why Declan has something called a sensory diet in place at school.  It is a steady stream of activities that he engages in in order to be able to remain focused on his school work.  To learn more about sensory diets, take a look at Lindsay Biel's informative website:

http://sensorysmarts.com/index.html

Addition or Subtraction?

Declan had just finished swimming and we were in the car waiting for Tova to come out of play practice.  It's early and we have quite a wait.  "Dec, let's do some homework," I suggested, expecting some strong protest in return.  "Okay," he responded.  "I did homework in the car with Daddy one time, and I liked it.  It was like a office."  I smiled.  I knew that he was thinking of the times that Brendan sat in his car in the driveway, holding conference calls.  But it was also the enclosed space, the quiet, the change in background for doing his work.  Something about it appealed to him.  He has always liked small spaces.  I thought about the time his SEIT brought over a large box and cut out close-able doors for him.  Four-year-old Declan crawled right in and sat in there for longer than I expected he ever would.  But Loren knew.  "He really needs a place where he could block everything out.  He needs a break from trying to get his brain to interpret all of the sensory information coming in.  It's hard enough to make sense of it, and from time to time, he's going to need a break."  I'm not sure exactly how long he stayed in that box without anything but himself, the darkness, and the smell of cardboard, but I remember looking at the clock twenty minutes later, appreciating the weight of what Loren was trying to show me. 

Declan reached for his backpack and took out his math homework.  I glanced at the homework and saw that it was math story problems.  I was curious to see how well he would be able to do them, as this kind of problem solving has always been difficult for him.  Read, comprehend, retain, problem solve, manipulate, record...their is a lot to accomplish within these seemingly innocent problems.  His processing, working memory, attention, and executive function deficits would all be challenged.  I was encouraged that his teacher had written out special directions just for him, and key words were highlighted in order to help him to figure out the operation he would need to use.  "Jack had 32 marbles," the problem read, "James has 24.  How many marbles do the boys have all together?"  I stayed quiet and watched.  I wanted to give him the time he needed to take the information in.  Wait time - it's so underestimated by parents and teachers.  If only they would just wait a little longer before interjecting, they would see how much thinking was really going on and how capable the children really are in figuring things out for themselves.  But I didn't wait long enough.  I interrupted in attempt to throw him a line.  "Hmmm," I said, "how many all together.  Is that addition or subtraction?" "Distraction," he responded.  He was not at all aware of his mistake, but he could not be more right.

Floor Time

I remember the first time this young man walked into our apartment, his shoulder-length ponytail, his glasses, his easy smile.  He instantly removed his practical shoes and calmly introduced himself to his new, inattentive student.  Two-year-old Declan was playing on the living room rug with his favorite toys, a collection of small, plastic, birthday cakes labeled with numbers on the side.  He was, as usual, stacking the cakes in number order and knocking them down, over and over.  Loren sat next to Declan, and in the most non-threatening way, as if to offer a new dog his hand, watched the game.  Then subtly, in tiny baby steps, he entered the play.  First with his voice, “Oh! They fell,” then with his hands, passing back stray cakes that rolled away after the fall.  When Declan’s trust grew and Loren was able to enter the play more fully, I was astonished, even a bit appalled, to see him break the pattern.  As if I had been indoctrinated into Declan’s rigid rules to the cake game, I uttered, “He doesn’t…” and then stopped myself as I watched Loren boldly do something different.  Declan eyed this new stranger with pure disgust as he rolled a cake on its side down a book he had propped up like a ramp against a nearby ottoman.  “No!” Declan instructed.  “That’s just wrong,” he seemed to want to say, but a piece of him, I could tell, was curious.  More importantly, and Loren was a master of this, it appealed to Declan’s sense of humor, and eventually, he was able to allow a smile to break the barriers of the rules despite this criminal act.   

Loren was our first SEIT (Special Education Itinerant Teacher).  He started working with Declan in our home through Early Intervention, and continued to shadow him as he went to nursery school.  He became an expert on Declan and taught us more about our son and ourselves than we ever imagined he could.  Using a clever combination of humor and Stanley Greenspan's Floor Time, Loren was able to get Declan to break out of his rigid routines and try new kinds of play, talk, and engagement with others.  The general idea around Floor Time is for the parent or therapist to follow the child's lead, and then slowly build something new into their play.  To learn more about Floor Time, visit Stanley Greenspan's site at http://www.icdl.com/

Music Therapy

We met our first music therapist when Declan was in the hospital for his first round of surgeries.  Skeptical when she first walked into the room, I was fast won over by her ability to engage and calm him.  They sang together as she played on her guitar, she gave him instruments to play along, and one time, after hearing that Dec was taking piano lessons at home, she arranged to have a keyboard brought to his bed.  What was so interesting about her work was the way that she was so completely tuned into Declan.  Rather than guiding him, she would "lead from behind," and let Declan's choices and actions guide her.  For many subsequent visits, we actually sought her out and invited her to visit Declan in his room.  The pediatric floor at NYU Langone actually has a full time music therapist whose job is to not only engage children in positive, fun, and meaningful ways, but also to promote wellness, help manage stressful situations, alleviate pain, help patients to express themselves, and to promote rehabilitation.  We now have a music therapist come to our home to work with Declan once a week.  I am still learning a lot about the effects of music on the brain, but from my more recent research and experience, I am learning that music can have a positive effect on so many issues that occur with people with special needs.  Judy, Declan's music teacher from Connecticut Music Therapy, tends to work with Declan on his auditory processing, expressive and receptive language, executive function, sensory integration, memory, and sequencing, while also teaching him to read music and learn to play different instruments.

Take a look at the video below about music therapy.  It was created by the Berklee College of Music: