Awesome Guy

Tell It to the Board

 

I am driving home from the first of two full day teacher workshops that I will run this week in late August.  Three days ago I was on the beach in Wellfleet, Massachussetts listening to the water crashing, feeling the sun on my skin, smelling the ocean air and a welcome blend of sunblock fragrances.  Now, I play the classical channel on XM to keep myself from completely losing it to the anxiety and disorientation that I feel.  Making the shift from summer to fall is hard for everyone; I too cannot seem to shift my body and mind fast enough to engage in the way I know I am usually capable.  My mother, who referring to this phenomenon meant to say "re-entry," once mistakenly said, "rear-entry."  I think the latter term decribes the feeling best.

I pull into our driveway and park.  I glance back at the bags I took with me to work and think better of taking them out right now.  I leave the car and gear behind me and walk into our house.  Tova and her friend Emma are at the computer looking at itunes and playing music.  Declan is at the large white wipe-off board that sits on the clumsy wooden easel we bought at IKEA.  Nothing unusual here.  I go upstairs to change, still thinking about the board.  I got my money's worth from that purchase.  I remember buying it at Staples a few years ago, and though I bought it with the intention of working with Declan on it, I never dreamed of what an incredible tool it would actually become.  I often scan the aisles of office and educational supply stores looking for unique possibilities for teaching Declan something new.  It's impressive what one can do with a set of library book envelopes! But the board has become an institution in our household.  Since it's arrival, it has played many roles, but mostly, it has become a sounding board for Declan.  It is here where we get glimpses into what he is thinking, much more than we would ever hear from asking.  He approaches the board many times throughout the day and just puts his thoughts down.  One time, he used it to express his fear of a character on SpongeBob, which triggered a conversation about what is real and what is fantasy.  Another time, Declan used it to create a multiple choice quiz for the rest of the family on how to handle different social situations. It was clear that time, that he was working through his own new learnings.

As I change into my comfortable summer shorts, I realize something.  The board is really a place where he can make his thoughts visually accessible to him.  Declan struggles with processing language and information, and the board gives him yet another way to work though new, difficult concepts.  Further, he gets to do it at his own pace, and can erase whatever he likes in an instant.  He is in control.  I walk downstairs, now eager to see what deducing he has left behind for us this time.  What I see is a list of what he has done and needs to do for the rest of the day, each job descibed in delightfully simple terms.  Eat breakfast, go to school, come home.  It looks so doable, yet school and days filled with to-do's are so difficult for him.  But there it is, laid out in a list just like he learned from his favorite characters Frog and Toad.  The tao of Frog and Toad, I think to myself.  I smiled and let my shoulders drop to where they should be, as I often do when I learn something new from my son. 

 

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

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.

Siftables

When I attended the Eagle Hill Symposium last spring, I was taken with all of the ways in which the school was using technology in order to provide access to the curriculum for different learners.  As teachers, we need to find for our students the best way to get new information in, and then the best way for the students to get the information out in order to show us evidence of their learning.  Traditionally, this would be the teacher lecturing to some degree, then the students telling back what they have learned either orally or in writing.  But what about the child who has difficulty taking in spoken language (i.e. receptive language disability), the child who has difficulty organizing their thoughts (i.e. executive function issues), or the child who struggles with expressing their learning verbally (i.e. expressive language disability) or in writing (i.e. dysgraphia)? There are some remarkable tools out there that are emerging as technology gets more and more sophisticated.  Did you know, for instance, that a variety of over 50,000 books can be read to a student using the site bookshare.org? In this post, I wanted to get everyone's imaginative juices flowing with a very new technology that has not yet made it into the schools.  Just imagine what we might do for different learners with something like siftables.  Take a look at the video below:

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:

"Awesome Guy"

It is early in the morning and I am getting the kids ready for school.  I am sitting on my bed and reaching across to the set of drawers that contain Declan’s clothes.  They are all labeled with Tova’s handwriting in bold magic marker colors: underwear, pants, shirts, sweaters.  Declan is able to identify the drawers by looking at the pictures Tova has taped next to the words, but still requires my taking the clothes out each morning.  He is standing beside me, as he always does, waiting for the process to begin.  He will also need for me to help him put his clothes on, as this process eludes him; he lacks what his doctors and therapists call motor planning.  That is, while his brain knows the goal of the task, it cannot quite determine the steps that need to be taken in order to make it happen.  The conductor of his body’s orchestra is sound asleep.  “Hands up,” I say, and I pull his pajama top over his head.  He rubs his bare chest with his hands and waits for me to put on his shirt.  I can’t help but to pause and look at him, his tiny shoulders, his little boy belly, just standing there, trusting my every move.  He knows no differently.  He patiently waits to be manipulated.  He doesn’t know that Tova is in the other room, carefully choosing each piece of clothing as if preparing for the Oscars.  She will emerge wearing what I can only describe as simply the best combination of clashing colors and patterns that render the outfit and her perfect.  He has never paid any attention to the clothes that I put on him.  Only, as I go to put a light blue turtle neck on this morning, he stops me and says, “no, not that one.”  Stunned, I ask him which shirt he would like to wear.  He rummages through the shirt drawer and pulls out a black t-shirt with the batman logo across the front.  I slow down as I always do at these moments, to take in what is happening, to give him the room to take the giant step he is taking, to not get in his way.  “Okay!” I say, and I help him to put it on.  “Why this shirt?” I ask, hoping that I am not pushing my luck.  Declan is six, and for the first time, I think, he might actually care about what he is wearing.  For many parents, this might not be something new; but for us, it is groundbreaking.   To be caring about how he presents to his peers means that he is beginning to develop “theory of mind”; that is, learning to put himself in another’s shoes and to consider their perspective.  I look over at him.  He is admiring the shirt he has chosen in the mirror.  He runs his hand over the batman decal on the front, then spontaneously makes a muscle and a superhero face to match it.  Then he answers me.  “Because I want to be an awesome guy.”