Awesome Guy

It's a Jungle Up There

"Um," he says approaching me gingerly in the kitchen.  I continue loading the dishwasher, waiting to hear what is clearly a matter of importance.  "I was wondering..." He is so predictably unpredictable these days that I have no idea what this is about, but I have an inkling that it might be one of those moments.  "Yes," I respond, continuing with my task.  "Just listen for a minute," he says, anticipating some resistance, "before you say no. Okay?" "Okay," I say, feeling like I am giving away a right I may well need to exercise in the near future.  I rise up from the dishes and give him my full attention.  "You know how Anna is sleeping over tonight and the girls are going to sleep in the guest room? I thought it would be a good idea if I got to sleep in there with them tonight."  I go to respond but stop, remembering how I promised to listen.  This is going to be a hard one I think.  He wants so badly to be able to "play" with Tova and her friends, but does not quite appreciate the needs of an older, teenage sister.  To him, inviting her to play with he and his friends is absolutely equal to the reverse.  But clearly, it is not.  The necessity of talk, manicures...it just requires a kind of privacy he will have a hard time comprehending and one that I feel the need to respect.  "I get it, Dec," I say, but already my tone has given him a clue to my response.  "Mom" he states firmly.  "Yes," I echo firmly.  "Just don't get me started."  There's the smile.  There's one in practically every exchange.  It's the moment when he says something that throws me.  It can be a word, a phrase.  A try, a misnomer, but nonetheless a beautiful attempt, with no fear of failure I might add, at new language.  "Just don't get me started," he repeats for emphasis.  He's heard it repeated like that somewhere before, I think, and he's seeing if it will get him the floor again.  I give him the floor.  "I could make a bed on the floor and I could sleep in there with them.  I think that will work.  I'm serious."  No mistaking how serious this boy is.  "Dec, the bed is so small and the girls need their privacy," I say, not enjoying the answer I need to give him.  I'm a sucker for not wanting anyone to feel left out.  "How about if I ask them," I say, "but only if you think you can hear the answer 'no' if that is what their answer is."  "I know.  It's just when I feel so angry...when I feel the grrrr...," his face is in a snarl and his fists are pumping downward toward the floor, "I will stop myself.  Like this: gr..." And he stopped himself.  I'm watching him.  He is performing the late night entertainment and doesn't know it.  "Okay, I'll ask," I agree.  Then he throws out the punchline.  "Yeah.  I think you should ask them.  It's just that I'm really getting tired of risking my life up there every night." 

Tova Was Here

It has been a long time since I've last posted.  As it tends to do from time to time, life gets in the way.  I have been working more and writing less, and like trying to get back into the routine of going to the gym (it's the best once you start, but getting yourself there is a monumental task), I have admittedly been avoiding the keyboard.  But in one very short and sweet moment, my beautiful, soulful daughter reminded me of the remarkable power of words, and I felt immediately compelled and inspired to write again. 

It was the memoir that Tova had silently been working on for her LA class over the last several weeks.  A few days ago, I came home and found it resting on the keyboard of my computer.  I went out to the back porch to find my husband Brendan sitting on the couch.  He saw what I had in my hand and nodded to me as I sat down in the wicker rocker.  "I dare you," he said, "to read it without crying." 

I am so grateful that Tova chose to share this moment in time with us.  I know that she did not write it for us, but because she wrote it, we are able to catch a tiny glimpse of what it must have been like for her.  For years I agonized over trying to make sure she was okay during all of this, and having this window into the mind of her younger self is a blessing.  After I read it, she said, "You see mom, I had no clue.  I was content just going about my business as usual."

Tova bravely agreed to allow me to post it on the blog, so here it is:

Caged

by Tova Byrne

    Hesitantly, I sidled indoors, ushered like a sheep by my grandparents.  The place struck me as unfamiliar; everything (and everyone for that matter) was too quiet and fragile.  The entire structure seemed to be made out of marble, glass, and stainless steel, and I wrung my tiny six-year-old hands together, as if anything I touched would suddenly shatter.

    "C'mon sweetheart, we're going to see Declan and your parents now," explained my grandmother as she led me around the gradual corner.  Mommy? Daddy? I wondered.  I hadn't seen them in nearly a month, but we conversed daily over the phone.  In the meantime, however, I stayed oblivious and highly enjoyed being passed around by relatives I scarcely saw.

    The elevator rang, and Nana held my hand as half the people poured out, like they were water and not humans.  They dispersed slowly, leaving the mouth of the stream wide open for the taking, and we stepped in.  Many followed, such as people in suits and uniforms, and even a lady in a wheelchair.  The doors pulled closed slowly, with what looked like much effortm, and we gave a small lurch upwards.

    People shifted uncomfortably, and the whole ride consisted of orchestrated coughs, sniffs, and scratches.  Nobody talked.  As we rode, the tide of the elevator thinned, only to be thickened again by oncoming others.  I stared in awe at the lady sitting so calmly in her wheelchair, not knowing any better.  I wondered why she always sat when it proved so much fun to stand and run and jump.  The elevator stopped before I got a chance to finish the thought.

    I was guided out again, but not directly.  Being on the elevator for so long, we had been eventually pushed to the back and so we created a path to get out.  I did this excitedly, for it reminded me of RushHour, my absolute favorite game at the time.

    The elevator door shut behind us, and we rambled on.  Funny-looking doctors passed, sporting shiny, puffy hats that made them resemble blueberry muffins from space, and they wore similar objects on their feet that went, SHHHH, SHHHHH, with every step they took.  With the exception of the sound of doctors sliding around, silence positively brewed within the building.  We passed gurneys and lots of closed doors, (which, for the record, I didn't like.  I was an incredibly curious six-year-old, and all secrets had to be known.)

        We finally added our silent and uncomfortable march in front of two gigantic white doors, with little webbed windows too high to peer through.  The intercom crackled, and Nana said the magic password, (which included her name and Declan's) and the doors opened magically.  I stumbled forward, reminded of Scooby Doo when they shuffled into a haunted house and the door swung wide, but nobody stood behind.  Forgetting the haunted house reference, I entered the wing the most at ease since I arrived.  There was more sound here, kind of a general murmur, and the walls acted as a sense of relief as well.  A mural of a jungle stretched out, if jungles really contained smiling giraffes and exotic butterflies.  I stood on tippy-toes and pressed a minute, marker-stained finger against an ornate orange wing, and moved on with a quiet sense of satisfaction.

    We eventually found the right room, and we filed in quietly.  I wasn't fully sure why we were in the hospital until now, when I spotted him in the massive, sterile crib.  He sat like a caged animal, a four-year-old on display at the zoo. 

    He positively radiated with exhaustion, which confused me some, regarding he was spending most of his time in bed.  He seemed too fragile, and I made my way over to my mom, who sat next to the crib.  I gave her a hug, and she too slumped with fatigue, but I understood this time.  It wasn't fun to sleep in a chair.

    "Hi Dec," I ventured, curling fingers around the glacial, rigid metal bars surrounding his bed.  It felt good to be able to actually touch something, although the whole setup was very unwelcoming.

    "Hullo Tofa."  He smiled at me and I gladly returned the favor.  He looked very odd, a little boy with a hat that made him look like he had an onion for a head.  Lots of wires sprouted out the top, which really didn't help the fact that I currently saw him as an onion.  The wires drooped down his back into a backpack, and I remember wondering why he was electricity-powered.  No wonder he looked as if he were in the zoo.

    We stared at each other for a moment or two, simply basking in each other's presence.  After which, I decided my little brother needed to laugh.  It became my mission, yet the forlorn boy laughed far too easily.  I couldn't blame him.  I didn't exactly adore the hospital, either. 

    Even after informed that these visits would repeat biannually, it took me quite a while to comprehend that this wasn't normal.  I mean, I didn't visit the hospital for such a span of time when I was four.  Declan stood by himself, different.  I didn't care.  He was my little brother and I was going to love him anyway.

Valentine's Day

 Brendan and I stepped out of the cab and onto the sidewalk in front of Fanelli's Cafe on Prince Street.  We looked up at the tired neon sign and smiled.  Ten years before, we had a date at the very same restaurant, the date that would bring us together for good.  That is why we are here on this day, on Valentine's Day, February 14, 2000.  My belly is swollen with our second baby.  Today is the due date, but there is no sign of arrival, and so we go on with our lives and celebrate Valentine's day.  We joke with the wait staff about my going into labor on their watch and order some towels and hot water.  I order some spicy food.  Toward the end of dinner, I begin to feel some small contractions, but they are too small to warrant any real action.  The next morning, however, Declan arrived.

Three years later, our beautiful boy, trialing cocktails of medications, enduring parades of therapists marching in and out of our home, recovering from the surgery that would change his life, did not yet know what a holiday was.  We tried, but the world was just still too distracting and demanding for him to know what a birthday present was and why he would want to open it.  It took everything in his sister Tova's being to not open the present for him, show him what's inside, and demonstrate why the gift merited such attention.  This year, at five years old, she tried a different approach. 

One morning, after dropping her off in the yard at PS 234, her kindergarten teacher, Shanon, pulled me aside and told me that she had something to show me.  I followed the class up the stairs to their classroom, and as the kids followed their morning routine, Shanon brought to me a piece of Tova's writing.  It was called Valentine's Day.  "You have to read this," she said, and left me at one of the tiny tables to read.  The story began by introducing a little girl that wanted to find the perfect Valentine for her little brother.  I loved how it mirrored her life, but was distant enough for it to feel safe for her to put on paper. The little girl searched and searched, and in the end, chose to give her brother a box.  For fear of sounding too proud a parent, I must say, I was dying to turn the page.  What was going to be in the box? What can this stack of crookedly stapled pieces of 8 1/2 x 11 white paper scratched with lopsided hearts and letters tell me about my little girl and how she was feeling during these difficult times?

I turned the page and read the words slowly, relishing this moment like a first kiss, knowing it was the only first I would get with this treasure.  "I decided," she wrote, my impatient eyes wondering down to the bottom of the page for a clue in her picture.  It was a drawing of a little boy sitting with a box in his lap, lid in his hand, and thousands of multi-colored hearts flowing out of the box and swirling above his head.  "I decided to give him the gift of understanding Valentine's Day."

A Sibling's Perspective: Making New Friends

The garage door grumbles open outside. My mom trudged through the kitchen first, with a short line of ducklings behind her. "Hi, Tova!" Declan singsongs cheerily. It is no secret how happy my brother is to have a friend here. "This is James." He gestures to the boy next to him, his eyes lighting up as he simply says the name. James and I exchange hellos, and then they shed all their layers like snakes and head upstairs to the Wii, Declan going on about some game or other. I chuckle at the small mountain of winter clothes on the floor and look up to find my mom. I express to her how incredibly happy I was to see Declan with other friends. He was quite attatched to his friend Leigha, and would do nothing without her. They always had playdates and insisted on playing together at recess every. Single. Day. This is why, as I waited with Declan just a few days earlier in the elementary school's cafeteria for his friend Jasper, I was delighted to hear him explain the day's recess. "I made up this game," he started. "It's called Bally. Whoever has the ball goes 'NOOOOO MYYYYY BALLyyyyyy!'" This is where he burst into a fit of giggles at the mere memory. Of course the game didn't make too much sense to me, as I imagine it doesn't to you, but I laughed along with him, always glad to see him so happy. "Who did you play this game with?" I inquired, testing to find anything out of the ordinary. "Oh, just Henry and James," he tried to shrug at this, but he was so bundled up it just looked like a bizarre twitch. I was taken aback, at both the fact that he didn't play with Leigha, and the fact that he said "Oh, just Henry and James," as if he did so every day. I is always refreshing to see someone branch out as a fresh butterfly would spread new wings, and it is even more amazing to see it coming from someone like my brother.

~Tova

City Kid

I am tucking Tova into bed.  She is adjusting her pillows and searching for her threadbare bunny.  I think to myself that even though she is beginning her fifth grade year, how prominent this beloved stuffed animal still is in her life. Face Bunny, in this way, is as comforting to me as he is for her.  No matter how many times she checks her outfit in the mirror or denies me a kiss goodbye at school, as long as Face Bunny still holds this sacred place in her arms each night, she is still my little girl.  We have just moved to Westport, Connecticut from New York City, and Tova has completed her first week in a new school.  I find a cozy spot next to her on the bed and ask her about how things are going.  “Really good,” she says with an enthusiastic smile.  I know she means it, but I sense that something is missing in her response.  A fraction of her expression betrays a hidden feeling. “Tell me more,” I inquire, and listen as she talks about how nice it is to be with her good friend Adelaide every day, how much Addy’s friends have welcomed her, and how much she is enjoying her new teacher.  I take a moment to thank the Gods that her friend Adelaide, daughter to my friend Stacy, lives in our new town and is in the same grade, at the same school.  “What else?” I probe, wondering if there is more to the story that she is willing to share.  “Well,” she says, and then pauses, “I still really miss New York City.”  She maintains her composure for a moment, and then a tear rolls down her cheek. I take her into my arms and hug her, every cell in my body feeling the longing with her.  I too had been struggling with our move, but I am even more concerned about how I displaced her from the only home she knew, from the friends that she loved, and the neighborhood she took such pride in being a part of.  A few months before when we told her that we were moving out of the city, she responded with a confident, “No.  I am a city girl and this is my home.”  I knew what she meant and I knew how important the city was to her.  It allowed her to be unique and independent, to have an identity during some unusually troubling times.  “Do you think you can come to love it here too?” I asked.  “I do,” she said, but released her hug in order to see my eyes.  She started to cry harder and then it came out.  “But you know what happened today at recess?”  There it was.  I was anticipating the horrible social injustice, the “new kid” incident that I dreaded was an inevitable part of moving.  Hasn’t she been through enough, I wondered to myself.  Her brother’s illness has incessantly interrupted her life, and now we put her through the stress of moving too? What kind of parenting is this? “My class went to the yard,” she began to explain between sobs, “and right there in the middle of the basketball court, there was a manhole cover.”  I am working hard to brace myself for the heart-breaking tale. “And I couldn’t stop staring at it.  I just spent the whole yard time looking at it because it reminded me so much of New York City.”  That was it.  The hurt came from the sentimental longing that overtook her when she saw the familiar city object.  I took a moment to imagine her standing there, spending an entire yard time staring at the rusted metal plate in the ground.  I spent a good part of that night watching her as she slept.

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.

Everyone Gets What They Need

 

Fair is getting what you need. That's what Mom explained to me this morning.  She was telling me why she was getting Declan the H1N1 vaccine, but not me (which seems funny, because I'm the one who has gotten three week-long illnesses in the past year). It does sound extremely unfair when you hear it at first. But then she finished. She told me that experts say that only kids with chronic diseases should get the vaccine, so the virus doesn't "conflict" with their other sickness. Therefore explaining the concept of this whole post. Getting him alone the vaccine is fair because he needs to get it. I don't. Another example is all the sick days I've had this year. Every single one starts with a chorus of "It's not fairrrrrr! I wanna stay home from school, too!"s from Declan. But it is fair. Because I need to stay home so I don't get anyone sick. He doesn't need to, he's in perfect health. Get what I'm saying?

~Tova

Social Skills

 

Declan, Tova and I are lying on the bed in the small guest room.  They have opted again to sleep in the queen size bed together instead of sleeping in their own, new, huge bedrooms that Brendan and I fought so hard to provide for them.  Since moving from our apartment in New York City they have not quite gotten used to sleeping apart.  We are lying on our stomachs, three in a row, our feet bouncing up and down against the mattress.  Declan can hardly contain his excitement over the fact that we are all reading his favorite book together, The Social Skills Picture Book: Teaching play, emotion, and communication to children with autism. Though I bought the book to help me to teach him to respond to different social situations, once he got his hands on it, he never let go.  He carries it around the house under his arm, like a college student between classes. It has become his transitional object, his equivalent to Tova’s worn Face Bunny.  Finally, he must think, someone put all of the rules in one place. 

 All of the lights in the tiny room are off except for a small lamp on the floor.  Declan carefully turns the next page like a teacher reading to the class and reads the title of the section.  “Interrupting II: Help with a Zipper.”  He turns to us and says with a knowing nod, his thick head of brown hair tousled every which way, “Oh, this is a good one.”  Oh my god.  This boy.  These moments.  They are reductions of pure innocence.  They are unbearably charming, and mostly lost to people who don’t know him.  How can it not be a great thing to read about how to interrupt someone in order to get help with a zipper?  This is great stuff! A page-turner.  The suspense is killing us.

 Tova and I nod in agreement, all the while holding our breath and hiding our smiles.  We share looks that say, I can’t wait to laugh about this with you later!  He mercifully decides that he needs a drink of water and leaves the room.  Tova and I burst into laughter and tears roll down our cheeks as we repeat the line over and over like we cannot believe he came up with something so funny.  For a moment I feel guilty for laughing, but it is like opening the steam valve for a much-needed release.  And really, we often marvel at how Declan can stoke our empathy and tickle our funny bones at the same time.  Declan returns and asks us what we are laughing about.  As we wipe away the tears and work fast to think of an appropriate answer, Declan comes up with one of his own.  “I know what is so funny.  You heard me fart in the hallway!” Accepting his response, we read on about interrupting to ask peers for a toy, how to greet people, and listening during a conversation.  When it is time to turn out the lights, I pull the covers up to their chins and give each a kiss.  Tova whispers “oh, this is a good one” to me, and Declan rolls over hugging his book and closes his eyes. I catalogue the moment for a smile when I need it. 

Check Ups

Hi, it's me again. Tova.  I'm doing another post (as you can probably tell) and this time on what I do when Declan goes for his "checkups" at NYU. So the very first thing I have to deal with is Declan forever talking about going. For up to a week before, it's "What time are we going?" and, "Will you get me some movies?" The second thing I have to deal with is the very slightest bit of jealousy. I mean, who doesn't want to sit in a bed for three days, (without school) sleep as long as you want, and have all-access to movies, TV, books, computer, the works. Even If you have a million wires attached to your head. But other than that, the procedure is now totally easy for me, because I've done it a couple times now. It's the same thing: Dr. Devinsky's office calls, alerting the open bed, Mom, Dad, and Declan swoop up their pre-packed bags and head to the car, while I say "Bye!" "Love you guys!" and "See you soon!" along with my grandparents who now live in the same town as we do. Plus there's barely any separation anxiety, because my parents take turns sleeping at the hospital with Declan, and the other stays home. And sometimes if it's convenient, I visit Declan in the hospital. That's always fun because he's totally excited to see me and I'm excited to see him and he makes me sit on the bed with him to play his Nintendo DS with him. So now it's totally easy for me to do this. In fact, it's normal.

Rules

This summer I was at the library with Tova and her friend Anna.  As they looked for books, they came upon a book that they had both read and loved.  They urged me to read it, so I checked it out.  I was blown away.  This book so beautifully illustrated what life must be like to have sibling who is in some way different.  In this case, it was a girl whose older brother had autism.  I know as I read this book that both Tova and Anna must have been able to relate to her on some level, and I was grateful that they thought to share it with me.  Tova and I ended up reading it together at bedtime.  The discussions that came from it were invaluable.