Fireworks for autism!

Watch all the way through to the hug at the end and you will feel inspired.

:~) .. the questions themselves .. (~:

ocean tide

I thought this quote deserved a special highlight today as it seems to perfectly describe my autism life journey.  If it also resonates with you, please share!


“Have patience with everything that remains unsolved in your heart.  Try to love the questions themselves, like locked rooms and like books written in a foreign language.  Do not now look for the answers.  They cannot now be given to you because you could not live them.  It is a question of experiencing everything.  At present you need to live the question.  Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.”

Rainer Maria Rilke,
Letters To A Young Poet



Happy Birthday Alex!

alex ten years oldDear Alex,

Today on the occasion of your 10th birthday, I thought I’d write about some memorable moments together over the past decade.  You are getting so big that by your next birthday I’m sure you’re going to be taller than I am!  Tonight I am going to indulge myself in memories of you as “my little guy.”  I hope that when you read this as a teenager you won’t roll your eyes too much.  Once a mother, always a mother— even when you are completely grown up and on your own, a part of me inside will always remember you as my baby boy.  I love you more than all the words I have.

Special moments I remember with you…

December 6, 2000.  You arrive in the world and I become a mother.  You are the first grandchild on both sides of the family, and the joyful fuss made about your birth is almost overwhelming—in a mostly good way.  Holding you in my arms your first night on earth, I tell you, “I was born to be your mother.”  The comment seems strange to me, but I know it must somehow be truth because it wells up so strong inside me that the words come out automatically.  Little do I know that years later I will recognize that first comment as the signal of the beginning of our out-of-the-ordinary journey together.

December 7, 2000.  I am dozing in the hospital as you lie in the bassinet at the foot of my bed.  All at once you start to kick and giggle.  I open my eyes to see a golden glow in the air around you.  You seem to react to it as if it were a friendly, familiar presence.  I whisper, “Nana” remembering your Dad’s grandmother who died while I was pregnant.  A couple days before Nana died, she told us that she dreamed I was pregnant and that I was going to have a baby boy.  At the time, no one even knew I was expecting!  I later tell Dad and Big Pop that I think Nana’s spirit visited you in the hospital.  Big Pop says he too feels his mother’s spirit is watching over our family.

Three months old.  We take a trip to Hilton Head with Mom Mom and friends.  I’m not convinced I’ve got the hang of this motherhood thing, but somehow we manage to travel well together— after packing every baby gadget imaginable into the back of Mom Mom’s minivan. 

Nine months old.  We take another trip to Maine with Grandpa and Nana Lisa.  This time I pack a bit less junk, but take my new favorite thing:  A blue and white striped baby sling.  On the morning of September 11th, 2001, we wake up to news of the collapse of the World Trade Center.  Later that day, we take a picture of me carrying you in the new sling.  Somehow being able to hold you close to me brings me more comfort that day than anything else.  The sling will turn out to be a symbol of comfort for both of us.  Years later, before you have the words for “hurt” or “pick me up” or “sick,” you will pull the baby sling off the doorknob and bring it to me time and time again to tell me when you need me.  You’ll even offer it to your little sister when you are a big 4 ½ year old and she is a fussy, crying newborn.  (To this day I’m not sure if when you looked at Hannah and handed me the sling you meant “Aw, she’s sad, maybe this would help” or “Excuse me, could you please keep that thing quiet?”  Either way, it’s a big gesture.)

Ten months old.  We take a sign language class together.  You learn the most important words first, like “milk” which becomes both the sign for milk in a bottle and also the sign for nursing.  I’m struggling with whether or not to let you “cry it out” in your crib at night.  I haven’t yet discovered I’m 100% a family bed attachment parent.  Silly me.  One night when I am trying this awful “cry it out” thing, waiting in the guest room with tears streaming down my face as I listen to you wail, I give up.  I come to your room exhausted and frustrated and say quietly, “Look, buddy, you just gotta sleep in your crib.  That’s what everyone tells me I should do.  What’s the matter?  What do you want?”  You look me right in the eye and, watching me carefully to make sure I see, you hold out your little hand and make the sign for “milk.”  I know you do not mean you are hungry, you mean you want to cuddle.  You’ve told me you need to be close in the way you know I will understand.  I hear you and I finally feel calm about the whole family bed thing.  I take you to sleep in with me and never again let you “cry it out.”

One year.  We arrive at Christmas dinner in New York.   You wear a little Santa suit with a hood with a white pom pom on the end.  (I’m sure you’re rolling your eyes as you read this, but no matter what you say I’d do it again.  You were too adorable for words.)  The night before, at Christmas eve mass, you charmed everyone in the church, then got completely showered with gifts.  As we walk into your aunt and uncle’s house, you run directly for Mom Mom and give her a big smile.  Your aunt is pregnant with your cousin Ryan and with her round belly she dresses up like Santa Claus to surprise you.  You scream bloody murder.  (And of course, everyone laughs.)

Two and a half years.  Our first musical conversation, humming Mozart together as I described in a post called Music is a language all its own.” Moments like this will sustain me through all the times of unanswered questions and “expert” opinion givers who wonder about your future.

Three years.  We see a homeopathic doctor and begin the gluten-free, casein-free diet.  Three weeks after starting this new special diet, you say your first sentence.  While driving across the George Washington Bridge en route to see your grandparents in New York, you spontaneously announce, “I go see Grandma and Big Pop!” joyfully from the back seat.  Your father and I are absolutely stunned.  You look at the traffic ahead and say, “Daddy, clean up cars.  Put on shoes.  I go see Grandma and Big Pop!”  In this moment I know we are somehow on the right path to helping you be the healthiest you can be, even if I don’t yet have any answers to the autism mystery.  Your first words bring me hope.

Four and a half years.  The day after your little sister is born, you meet her for the first time in the hospital.  You want to give the baby a kiss, but you’re not sure exactly how to do that since she is so tiny.  You decide to kiss her on her nose, but you are so big your kiss covers her entire face.  It is such a cute and funny display.  I think to myself that more than the gift that Hannah is to me or your father or anyone else, Hannah herself is a gift to you.  She is the first person who will not wonder about your language or question your quirkiness or analyze your sensitivities.  She will look to you with high expectation and think you are great.  She will love you unconditionally as you are because you are her big brother, and she will want to be just like you.  (At least, she will in the very early years of siblinghood…)

Six yearsTigger takes a swim and you begin music lessons.  You play drums and piano.  You watch a video of Tony Royster Jr. performing an amazing drum solo and you imitate his movements, even twirling your drumsticks.  At your birthday party, you and your cousin rock out on drums and guitar while the whole family cheers.  I get my first glimpse of “teenage Alex” that December and I imagine you as a rock star one day.  I’m still convinced it would be the perfect job for you.  You could be the handsome drummer in the band, the one who doesn’t talk much but can bang out a perfect rhythm, make all the girls fall in love, and occasionally get away with trashing a hotel room because your fans will forgive you a few eccentricities. 

Seven years.  After a rocky start in public school, we enroll you at a private school for kids with autism.  The school is based on principles of Applied Behavioral Analysis and their expectations for you are sky high.  Even though I know how smart you really are, I worry that you will doubt yourself because of your still-limited expressive language.  Kindergarten was rough because no one quite knew your potential or how to bring out all the knowledge locked inside your head.  At your new school, things are different.  They get you, and they know how to teach you.  I breathe a sigh of relief that you are finally in the right place to learn.  Your self-esteem blossoms.  Over the next three years, you will surprise me again and again with the simply amazing things you are achieving.  When I call your teacher one day from the bookstore to ask what kinds of books would make good gifts for you, I cry tears of joy when he says, “He likes the Magic School Bus series.  The Butterfly Battle is his favorite, I think” and I realize you’re not only reading on grade level, but you have favorite books!

Eight years.  You begin writing, cooking, drawing, doing chores around the house, taking care of your own stuff.  Your teachers help you bring home the things you learn in school.  You go from being my “little guy” to being my independent, responsible “big guy.”  Whenever I ask, you give me the biggest hugs, squeezing me tight.  You and Hannah make up your own games together.  You even team up to get in trouble.  You are often the instigator and Hannah is the spokesperson.  It goes like this:

(sounds of giggling behind closed doors)

Me:   “What are you guys doing in there?”

You:   “Okay.  Go sit on couch?  We stay here.”

Hannah, peeking out the door:   “It’s okay, we’re fine.  Don’t come in.  Nothing to see here.  You go in the living room and we’ll come out later, okay?  Okay.  That’s it.  I love you.  See you later.  Bye.”

Hannah closes the door again.  A few minutes later you guys are discovered un-potting a plant or taking everything off the bookshelves with very happy, but guilty conspiratorial smiles on your faces.

Nine years old.  Your engineering skills grow.  You build incredible marble machines, sometimes researching ideas by first watching YouTube videos, taking notes on what other kids have tried, finding materials and creating new functional works of art.  You begin to write your own stories.  You make lists of your favorite things.  You read recipes and start expertly cooking quesadillas, baking muffins, trying new food combinations.  One day you read the Domino brown sugar box, copy a recipe for cinnamon rolls, and title it:  “Schedule for Mom to make the cinnamon rolls Now” sending me on a quest for the perfect gluten-free ingredients.  More valuable to me than anything else about your writing ability is the window it gives me into your thoughts and feelings.  You write stories about our home, our family life, your wishes, worries, even dreams.  You are less frustrated about the words, and more persistent in describing things so I can understand you.  Again, I feel grateful for your persistence and your faith in me.  You show incredible patience as we play “20 questions” to help me understand what you are asking for or thinking about.  You teach me each day how much you remember. 

Especially these interactions make me realize that nothing that I did as your mother over the last ten years was meaningless.  You remember the choices I made for you, the places we spent time, the values and life lessons I tried to convey through the books we read and the games we played.  You remember the fun we had with friends, the challenges we faced as a family, the way we always come back to unconditional love no matter how big you get.  A decade later and I still believe, as I wrote in my six-word memoir post, that I was somehow “born to be your mother.”

marble run cake at school

Ten years old today.  You smiled at your big guy Timex watch birthday gift, which helped you know just when the bus would come.  You shared cake (yes, the marble run cake!) with your friends at school.  You used a gift card present to pick the exact thing you wanted at the store (a shiny silver desk lamp).  You asked me to play with you and I did and I treasured it.  You hugged and kissed me goodnight and snuggled a bit when no one was watching. 

You are my rock star.  I wish for you a lifetime of feeling-good days.  Not perfection, just appreciation for the little things and the ability to take each moment as it comes.  I am proud of you and I will always love you.



visions & expectations

(another teacher tribute…)

Okay, I’ve been a bit lazy with my posts the past couple weeks.  So I’m pulling another piece out of the archives for you all.  This is a story I wrote as part of a little exercise I did with Alex’s home program team several years ago. 

Because I believe teacher expectations have a lot to do with student success, I wanted to do something to broaden everyone’s ideas about what my little guy could do and be and achieve.  I asked each teacher to bring a “vision” of Alex to the next team meeting.  The vision could be of Alex at any age, in any situation, at any time from childhood up to old age.  I asked them to describe in as much detail as possible what they saw Alex doing, his personality, his strengths… whatever would create the most vivid picture for the rest of us of Alex’s potential.

The stories the team brought to that meeting were phenomenal.  One painted a picture of Alex as a teenage drummer in his own garage band.  Another saw him as a brilliant college student.  One by one, each person read their visions to the group.  Every story highlighted something special about my unique kid.  Alex’s quirks, like his obsession with lights and electronics, were transformed into assets.  And as a result, our collective dreams and expectations grew.  The following was my small contribution to that process.

Dreaming for Alex

Alex is 35 years old.  He is dressed a bit more formally than his usual jeans and t-shirt.  His hair is kinda long in back, wavy.  He is clean-shaven, but has a bit of a tousled “Brad Pitt” sort of look to him.  He is sitting in an auditorium with his beautiful wife, awaiting the announcement of an award.  His name is called.  Everyone applauds.

He smiles, kisses his wife and walks to the stage almost confidently, like he had foreseen these events and knew his name would be the one called.  He takes his place at the podium and is handed the Oscar for “Best Innovation in Lighting Direction in a Major Motion Picture” at the technical portion of the Academy Awards.  He knows that although this part of the awards show won’t be televised in its entirety because it is not as glitzy as the live-broadcast part, the celebrity host of the night will be responsible for introducing this show’s highlights.  He knows that right now he has a chance to make a statement to the world.

He clears his throat and looks around.  For a second there is an awkward silence as the audience waits for him to begin speaking.  He says simply, “Thank you.  This is great.  I’d like to thank a few people who helped me.”  He takes a list written on half-torn scrap paper out of his pocket and begins to read: 

“Nicole, Sheila, Albert, Joan, Damion….” 

The audience smiles and applauds politely as each person appears from backstage as their name is called.  He continues, “…Max, Kim, Debby, Lisa, Dani, Sue, Janet, Trisha, Denise, Miki, Susan, Mari, Michelle, Lauren, Steph, Jennifer, Alli, Jill, and Ashley” reading each name slowly and deliberately to give the audience time to hear it.  There is a little buzz going through the auditorium, whispers of “Who are these folks?” and “Did we work with them before?”  When the stage is filled with people and Alex is surrounded on both sides, he leans forward to the microphone. 

“Everyone I worked with on this film is great and deserves great credit.  Thank you all.  But these people standing with me aren’t them.  Tonight I want you to meet the people in my life who helped make it possible for me to be here, to learn all I have learned, to contribute to the world.  These are the people who believed in me and my potential unconditionally at the start of everything.  See, when I was 3 years old and my mom and dad were being told that my future was uncertain, these people believed in me and helped me.” 

He pauses then continues, “Because I have autism.  I didn’t speak until I was four.  I used to have terrible anxiety and stomachaches.  I was stuck behind a wall in my mind, knowing I could do great things, but scared and alone thinking no one would help me to figure out this world.  When I most wanted and needed someone to help me, these people did and this is the best way I can think of to thank them.”  He turns to the crowd surrounding him and says, “You guys are great and you deserve great credit.  Thank you.” 

The audience erupts in roaring applause, the first standing ovation for the most innovative technical lighting director in the history of film.  The celebrity host wipes away a tear as she escorts the crowd from the stage.  And of course, Alex’s speech is shown on the highlights reel during the live-broadcast Academy Awards, putting the words of his thank you to his first teachers into the eyes and ears of the whole world.

Thank you guys.  Alex loves you all.