Awesome Guy

Dear, Dear Therapists

Dear Therapists,

This vacation we braved Great Wolf Lodge and its enormous indoor water park.  Have you ever been there? Think airplane hangar filled with every variety of water play apparatus.  Water slides, pools.  Wave pools, water fountain pools, basketball hoop pools, pools for riding clear round tubes along circuitous currents.  It's really a therapist's dream.  I could see each and every one of you working your way through the park with your tiny charges.  I can just imagine some of you working on forging the path for new language.  "Water!" "Splash!" "I want."  "Can I have a turn?"  "What is your name? My name is..." And it's an occupational or physical therapist's dream really.  A million opportunities for fine and gross motor work, and forget the obstacle course possibilities. 

The last time we were here, we encouraged Declan to try out the medium-sized water slides, the kind you hop on without a tube and are short enough if you change your mind half way down.  Tentative, he went for it anyway.  He sat right down in the rushing water at the top of the slide and let 'er rip.  Tova cheered him on at the bottom.  I held my breath.  Hope he likes it, because there's nothing I can do about it now.  The smile at the end was all we needed to see to know that it would not be his last ride.  "I want to go again!" "Okay!" I say, pointing him toward the stairs that lead back to the top.  Flights of stairs are stacked on top of each other.  They go in different directions and sport all kinds of water toys, squirt guns and buckets; but eventually, they lead back to the top of the slides.  That is, if you don't go in the opposite direction across the one bridge that connects these stairs to another section of the park.  Even so, getting to the slides seems intuitive.  You can see where the slides are as you climb, so you can inch your way toward them despite the distractions on the way.  But that time, years ago, Declan didn't and while I watched him the entire way from the bottom of the slide, the people crossing in front of him and the structure of the equipment eclipsed my view enough to lose sight of him.  I started to chastise myself for letting this happen.  How could I set him up like this? There's so much that is required to get to the slides.  My mother's scan could not find him and I finally went to a lifeguard for help.  Well equipped for this task, they put out an all-call for a little boy, six, in a blue and green bathing suit.  Declan soon appeared with a lifeguard by his side, looking extra nervous.  It was his first "Remember when I got lost?" scenario.  I ached looking at his little face, brows working extra hard to hold back the tears.  "It's okay boo-boo," I said hugging him, trying to convince myself too, "you were safe the whole time." 

That was last time.  This time, Declan was still very excited to return.  The experience did not keep him from wanting more.  In fact, we have come to refer to the place as GWL around him in order to avoid the rash of questions about the next time we could go.  Pretty cool he still loved going there, right? In the past, when he was younger, it might have become another place we would have to avoid.  Remember how tentative and reluctant he could be? Progress, people, progress! Well, this time, the first part of the park he approached was the lily pad pool.  I watched as his friend Jasper crossed the series of leaf-shaped rafts toward the opposite side of the pool.  A net made of rope hung above him, and he used it like a monkey bar as he hopped from one pad to the next.  He had to work to keep his balance because the lilypads, each anchored to the bottom of the pool, were still very precarious and unpredictable.  They tipped and turned each time his weight shifted.  I worried how well Declan would be able to navigate this and whether he would become frustrated.  Recently, when he struggled to climb a tree that his peer easily navigated, he got very angry and upset.  I started to make a list in my head of the skills required: executive function (the ability to plan ahead and sequence the steps that need to be taken), motor planning (the brain's ability to tell the body what to do and with which parts), speech and language (the inner voice to coach oneself along), balance...then I just checked to make sure there was a soft cushion for any possible head injury.  I know, have a little faith mom.  But I am, after all, a mom.  Jasper successfully made it to the other side and it was Declan's turn.  He didn't hesitate at all and grabbed a piece of net.  He took a step onto the first pad, and remained amazingly stable.  Abs, I thought.  Thank you physical therapists and hippotherapists!  Then he grabbed the next piece of the net without hesitation.  He knew what to do next, and the vestibular motions were tolerable. Thank you occupational and physical therapists! It was a long way to the other side, but he perservered, even enjoyed the new challenge.  Thank you SEIT's! Finally, he made it all the way across without a fall.  I waited for eye contact and threw my arms up in the air to congratulate him from afar.  He came running around to where I was standing and said to me, partly astonished at his own accomplishment, "I'm so good at it!" Thank you speech therapists.  Thank God for therapists.

Love and tremendous admiration,

Jennifer

It's Going to Be Okay

 You wake up the morning of the PPT meeting.  The one that you have jumped through a thousand hoops to get to.  You have read and reread every document that offers an opinion on your child.  You've made lists.  Oh, you have made lists.  Of what he can do.  Of what he can't do.  Of what you've done and what you need to do next.  If your google list could be accessed it would tell a story of the dark and frightening thoughts, the attempts at diagnosis, the search for answers, the thirst for connection, the hope, the action, the dismay.  In your head the committee convenes and reconvenes to prepare for the gathering at the school, and no one can seem to agree.  The stormy winds keep sweeping each idea, each initiative up and around in circles, and teases the part of you that believes you have any control over what will happen.  "You catch more flies with honey."  "The squeaky wheel gets the grease."  You look for the balance, the one between compassion and brute force.  You go, you swear to yourself that you will remain calm and for God's sake, you will not fall apart at the seams when it's over.  You listen, you talk, you try to follow, you try to make them understand.  You leave, you replay the scene over and over in your head.  You go home and you crawl into bed and pull the covers over your head.  You use the silence to process it all.  Are you making all the right decisions? Are you supporting him as best as you possibly can? Are you missing anything? Is it the right decision? The wrong decision?

Parents, remember this one, very important, very helpful notion: You are doing the best you can with what you know right now.

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

The Dunderheads

 

Their nasty teacher, Miss Breakbone, who conjures up images of Miss Trunchbull from Roald Dahl's Matilda, calls her class a "scraping-together of fiddling, twiddling, time-squandering, mind-wandering, doodling, dozing, don't-knowing dunderheads."  What she fails to understand is that the activities that her students drift to are in fact their great strengths.  The book flies in the face of the conventional notions of school intelligence and emphasizes how other kinds of smarts can actually be more valuable and functional in the real world.  In this case, the children put together their various talents in order to solve the real problem of getting back an item the evil teacher took away from Junkyard, the boy that is particularly adept at finding treasure in trash cans.  Another character, an expert with paper-clips, helps the team to scale a wall.  "I nodded at Clips.  His reading scores were low.  His math scores were worse.  But if they tested him for paper-clip chains...He opened his briefcase. 'Two eight-strand ten-footers, fisherman's weave, with grappling hooks.'"  The crowd of different-thinkers win in the end, as do the children that read this book.

Multiple Intelligence, a book by Dr. Howard Gardner that came out in 1983, describes the eight kinds of intelligences that people can possess, and discusses how schools and standardized tests still only test for two of the eight: verbal-linguistic and math-logical.  We all know the people in our lives, however, that did not ace school or the SAT's, that are in fact very successful in life.  Intelligence is defined by Gardner as:

• The ability to create an effective product or service that is valuable to one's culture
• A set of skills that enables an individual to solve problems encountered in life
• The potential for finding or creating solutions for problems, which enables a person to acquire new knowledge

I am grateful for authors like Paul Fleischman, author of The Dunderheads, who recognize and illustrate this idea in plain terms.  It's time.

That's Assistive Technology?

Assistive technology was always a term I thought referred to the kind of adaptive hardware that might help non-speaking students to communicate, or would help students with auditory processing issues, for instance, to be able to focus on the teacher's voice during a lesson.  Assitive technology, however, also refers to any adaptive material that helps children to gain access to curriculum and function more independently within a classroom.  In fact, did you know that there is such a thing as "low tech" assistive technology? There is low tech, medium tech and high tech assistive technology.  I write about this, because even though I am in education, I did not know to ask the school for an assistive technology evaluation until very late in the game, and sadly, even though the school knew it was available, they did not inform me.  Our son Declan responds incredibly well to information presented in a visual format, and seems to be able to take in new learning when it is presented on the computer.  Consequently, I am often looking for good resources to help us to help Declan at home and at school.  Today, I found this incredible website created by Susan Stokes.  It is the best explanation of assistive technology that I have seen so far. 

Here is an excerpt from her page:

What is Assistive Technology?

According to the Technology-Related Assistance for Individuals with Disabilities Act of 1988 (Public Law 100-407), an assistive technology means any item, piece of equipment, or product system, whether acquired commercially, off-the-shelf, modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. Assistive technology service is any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device.

Typically, children with autism process visual information easier than auditory information. Any time we use assistive technology devices with these children, we're giving them information through their strongest processing area (visual). Therefore various types of technology from "low" tech to "high" tech, should be incorporated into every aspect of daily living in order to improve the functional capabilities of children with autism.

For more, go to http://www.specialed.us/autism/assist/asst10.htm

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.

Not the Right Classroom Setting? Think Again.

In my work to help implement inclusive co-teaching classrooms, teachers will often say to me about one child or another, "I just don't think this is the right classroom setting for him."  Every time, I ask them, "Why not?" It is very hard for most people to imagine how special needs can be met in a mainstream classroom.  While he does not provide all of the answers, Dan Habib takes the issue head-on in his remarkable movie, Including Samuel.  Below is a description of the film and a short trailer, both taken from the the website, http://www.includingsamuel.com/home.aspx:

Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib’s award-winning documentary film, Including Samuel, chronicles the Habib family’s efforts to include Samuel in every facet of their lives. The film honestly portrays his family’s hopes and struggles as well as the experiences of four other individuals with disabilities and their families. Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.

The film has been screened at universities, national conferences, public television stations and independent theatres across the country. Including Samuel has also been featured on NPR’s All Things Considered, Good Morning America, as well as in the Washington Post and the Boston Globe. The film won the Positive Images in Media award from TASH, an international group committed to the full inclusion of people with disabilities. It has also screened at the Sprout Film Festival at the Metropolitan Museum of Art, the Boston International Film Festival, the Ft. Lauderdale International Film Festival, the Moscow International Disability Film Festival and won the “Excellence Award” from Superfest International Film Festival in Berkeley, CA.

Mercy Corps, an international global aide agency, is translating the film into Arabic and will screen it throughout Iraq to support that country’s nascent disability rights movement. The film will be re-released on DVD in October, 2009, with audio description, extras and translations in multiple languages.

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/

Notebook Babies

 
I continue to be very intrigued by the different ways we can teach children, particularly those who tend to take in information in different ways.  From a very early age, Declan made it clear to us that anything we presented visually would be much easier for him to learn.  When Declan got into the habit of getting into our bed in the middle night, we talked to him about it and explained in many ways why he needed to sleep in his own bed.  But no matter how many times we brought it up, gave incentives, took privileges away, got silly with him about the whole thing, the message just would not sink in.  Finally, one day I asked him to make a sign.  He drew a picture of a bed, then drew a red circle with a slash through it.  Below it, he wrote, "NO KIDS IN MOMMY AND DADDY'S BED."  I asked him to tape the sign above our bed to remind him of the rule.  Don't you know, he stopped the night-time visits for weeks! (Yes, it did start up again).  But the sign idea has lived on and has proven to be a tremendously useful tool.  Except of course the time when he made a sign for our dog Bruce which had the word BITING inside the red circle and slash.  Bruce ate it.

My point is, and I've said it before, sometimes we need to get the information in in different ways.  Tova, Declan and I just came across a series of short movies made by a 5th grade science teacher.  They reminded me of Brainpop, in that they use video to teach.  What is unique about these movies though, is that Tony Dusko has a tremendous sense of humor and knows what kids like.  Tova and Declan could not stop watching them! Here is a sample of one.  In fact, Tony just let me know that this very film will be airing on Nickelodeon on Wednesday, November 18 at 4:00 Eastern as part of their animation film festival! You can see more great movies on other topics such as making friends and doing homework, at http://www.notebookbabies.com/

Executive Function and Motor Planning

When Declan was in kindergarten, his teachers would retrieve the class from down in the school yard, and walk them up the stairs to their classrooms.  The kids would walk in a line-like mass up the stairs, sometimes a few straggler parents bringing up the rear.  The routine was, when they got to the classroom door, the students would take their notes and homework out of their backpacks and place them in the labeled baskets sitting on the table outside the room.  Then they would take their coats, their hats, their mittens, and their backpacks into the classroom and store them in the closet.  Other tasks awaited them when they were finished, like turning over their attendance card, checking to see what their class job was for the day, and reading the schedule or morning message.  A kindergarten teacher once upon a time, I know that these are all sound, valuable routines.  And with guidance from day one, most kindergarteners grasp the routine within the first month and do it without thinking, the way a grown up might drive home on auto-pilot. 

I will never forget the day in October when I accompanied the class to their room.  The minute the group arrived at the classroom door, all of the children dropped to their knees and started to pull their folders out from their backpacks.  All of them, except for Declan.  Thinking nothing of it, I casually prompted him to get started.  "Go ahead, Dec.  Don't mind me."  But Declan stood there, as if he did not hear me.  It was odd.  He seemed aware and ready to start his day, but continued to stand there.  Then I noticed him walking through the sea of children and backpacks and into the room, coat and backpack still on his back, and he headed toward the attendance chart.  "Wait, Dec!" I reminded him.  "First you need to take your notes out."

What I realized that day, was that Declan had every intention and desire to follow the routines his teachers set out for him to do, but was unable to sequence the steps that needed to be taken to do them.  After I brought him back outside the room and helped him, I realized the information was in there; he knew what had to be done, but even the simple notion of I need to take my backpack off first before opening it to get my notes did not occur to him.  It was fascinating.  Concerning, but fascinating.  The part of his brain whose job it was to tell the hand to slide the backpack strap off his shoulder was asleep at the wheel.  It wasn't until his teachers and I found ways to sequence the routine for him that he was able to eventually do it for himself.  We knew he learned best visually, so we ended up using a student model to show Declan each phase of the task, step by step, almost like a game of follow the leader, which then led to a chart similar to the one shown above, made by a team of co-teachers that my colleague worked with at PS 41 in Manhattan.  It eventually worked, and not only did we help to foster his ability to function independently, but we also freed him from constant prodding and reminders from peers and teachers.