Who would break this heart?

Seriously, who?  Look at that smile… 

Okay, by now if you’ve been reading regularly, you know that I’m somewhat of a sap.  It’s true, I admit it, I cry at McDonald’s commercials.  (And not just because the food they’re advertising is slowly killing our nation’s children… *insert loud sniffling sound here* …)  Seriously, I get sentimental.  I think it’s a hazard of truly knowing how to count my blessings.  Each day just brings one more thing to get sappy about.  Usually it’s something sweet my daughter said, or a new skill my son’s teachers discovered at school, something like that.  Rarely are my sappy tears tinged with that pang of real sadness that comes with grief or loss or longing.

But this afternoon, my heart ached for my boy.  For about a week now Alex has been out of sorts.  Not quite himself, acting out, on the verge of  a meltdown.  And today he flat out punched a teacher.  Of course she called me right away to tell me what had happened and we spent a good bit of time on the phone trying to sort through what might be going on inside Alex’s head.  Perhaps it was hunger, after all he is growing.  Maybe it’s classroom dynamics, had there been any rearranging of activities recently?  The change of weather, seasonal allergies, maybe coming down with a cold?  (And of course my greatest fear is ever-present in the background of these conversations.  That maybe I’ll never know what’s hurting my child or what’s really going on.  Maybe there is no answer, no logical conclusion.  At all.  Ever.)

After milling over the conversation with the teacher and all the possibilities for a couple hours this afternoon, I decided to head home from work early to spend some extra time with Alex to see if I could help him get things back on track.  When I arrived, Alex and his team were just coming home with little sister Hannah from the bus stop.  I could see Alex was sad, but sometimes hyper and sometimes on the verge of angry.  He alternated between running to the window, looking out at the neighborhood longingly, smiling to himself; and muttering to himself in a frustrated way or looking like he was about to cry.

Yesterday afternoon at  the bus stop with Alex, I noticed how particularly excited he was and how he seemed to be showing off for one of the girls who had accompanied her mother to meet her sister.  He kept saying “Meet friends at the bus stop” loudly and walking over to them.  The mother looked like she didn’t even know what to make of Alex, and the little girl just stood silent.  I tried to encourage interaction and explained, “Alex wants to say hello and be friends, but he’s not quite sure how to do that.”  She smiled politely but didn’t even attempt to say hello back.  Poor Alex was doing his best to smile, make eye contact, and impress this girl with his jokes and funny plays on words.  But she seemed to be having none of it.  (In her defense, maybe she was home sick from school or there was something else preventing her from coming forward to join the conversation.  Still it was heartbreaking to watch.)  So apparently today Alex had thrown a fit at the bus stop when he tried to get on the bus to talk to the same girl and was told by the bus driver that wasn’t allowed. 

Take a sensitive ten year old boy whose receptive language and comprehension are perfect, put him in a body who’s expressive language is impaired and whose social barometers are skewed.  Then amp up all the typical desires, challenges and emotions that go along with being a ten year old guy.  Throw the whole thing into the world of elementary school “bus stop politics,” add a parent or two who are essentially clueless about kids who are different from their own, and mix in the absolute embarrassment of a public meltdown.  What do you get?

For me, I got a pang of sadness.  I ached for Alex and wished so much that the object of his affection could see how hard he was trying and would feel compassion and interact with him.  I wanted the other moms and dads and kids to see what I see in my son.  I wanted them to know how much it took for him to be socializing the way he was.  And goshdarnit!  I wanted them to recognize how special that whole situation was and how lucky they were to be part of it.

But my blessings are not their blessings.  And honestly, I don’t know if any of the other players in this scenario know how to count them or not.  When I was a kid, I was like that little girl.  I wish now that someone had shown me how to reach out and take a chance on something or someone new.  I see the amazing ways my life has been enriched by the extra special folks I’ve come to know in the last seven years.  That is my blessing and I am lucky to recognize it.

In the early years of Alex’s autism, my friend Susan recounted a story about seeing a mother in Bloomingdales department store yelling at her little girl because she spilled ice cream on her dress.  Susan said if it weren’t for her oldest daughter with ASD, “I coulda been that mom.  Now I know the dress will wash, the spill doesn’t matter.  But I so easily coulda been that mom yelling at her kid.  I am grateful for my daughter because she changed me.”

Alex, sweetheart, girls are silly.  Sometimes they act strange and it’s okay if you don’t understand them.  I think nobody really does.  Remember that you are smart and funny and handsome, even if that silly girl didn’t pay any attention.  You have many gifts to be appreciated.  It’s your challenge to communicate out there in the world, but you keep trying because you’re doing great.  And at least one girl- your mom- is grateful to know the wonderful person you really are.  Thanks for changing me.

… remember to breathe…

(written with gratitude for the concept of “radical acceptance”)

Breathe. Remember to just breathe.

When did life get so overwhelming? I had it all planned out. I did everything in what seemed like the most logical, most efficient order. I had some semblance of balance and control. Or at least, I thought I had it. The ups and downs were just that, the ups and downs. A rollercoaster that I could ride and weather and tolerate and work with. Then the autism happened. Then the rest of it happened. And at some point last year, something funny happened to my mind.

Now I have to remind myself to breathe. I find tools for meditation. I take special vitamins [read regular over-the-counter multivitamins, not “special vitamins” in any other sense *wink*]. I seek out specialists for all the different parts of my life because no one person is big enough anymore to find all the answers I need. My son has no less than 10 “experts” following him at any given time. He has been “under the microscope” since age two. And the most common reactions to the rollercoaster dips and turns on his developmental path?

“Still a puzzle…”

“We’ve never seen that before…”

“Sometimes this [insert therapy, intervention, medicine or food of choice here] actually has the opposite effect to the one we predicted…”

“Well, in the end, it’s really the parents who know their children best. You do know your son, don’t you? I’m sure you’ll find the answers. …Ma’am? Did you hear me? You do know the answers, don’t you? …Ma’am?”

That’s where I space out and tell myself again to breathe. In and out. In and out. Just a few more minutes of breathing and the amazing answers to the autism puzzle will come to me… (Dr. Such-and-Such will you please stop waving those expert resource lists in my face, can’t you see I’m trying to meditate here?!)

I suppose I shouldn’t be amazed, but I am continually astonished by the amount of energy it takes to live this life and raise my child. Not that I’m chafing all the time, mind you. Many days I am quite content with being busy, running the marathon, even putting out the spontaneous fires that erupt periodically. It hasn’t killed me yet, so I can only assume it’s making me stronger. Still… remember my six word memoir? Astonishing endurance.

For that reason, I’ve decided today between breaths to share with you all one of my very favorite new-found resources for managing stress and unlocking doors to a healthier, happier existence. The website is www.tarabrach.com (“meditation, emotional healing, spiritual awakening”). The book is “Radical Acceptance: Embracing Your Life With the Heart of a Buddha.” The author, Tara Brach, is a nationally known teacher of Buddhist meditation and a clinical psychologist with over 35 years experience helping people live healthier lives. I invite you to dive on in and see if anything resonates with you. The writings, meditations and links have been wonderful resources for me.

Not sure where to begin? Try starting here:

How to meditate.

An interview with Tara Brach.

Working with Difficulties.

 

“My son has autism. What’s your excuse for acting like that?”

I recently read a post by Stuart Duncan on apologies vs. explanations which started me thinking about how I react to people in public when my child is present, and how many ways those interactions could possibly go.  So I asked my friends what they say to people out there in the world during those strange moments when all eyes seem to be on their kid with autism for one reason or another.  My specific questions were, “What do you say?  What do you wish you could say?” 

One mom replied, “I get angry, I can’t help it.  People are such idiots, until they are in our shoes, you can’t reach them.”  She went on to say, “I recently bought a t-shirt for my son that says ‘Go ahead and stare, it won’t cure my Autism’.”  Another mom politely said she just ignores people, but added with a grin that she wishes she could say “Mind your f-ing business!”  A friend and mentor of mine quietly chants to herself, “Bless them, change me, bless them, change me” to help her get calm and centered when confronted by difficult people.  But my favorite response came from the mother of one of my son’s classmates who said, “On a good day, I try to educate.  On a bad day I say ‘My child has autism. What’s your excuse for acting like a [insert insult of choice here]?’”

I have to say I have been there, done that and thought all of those plus a hundred other things at various times over the last seven years.  To tell the truth, I haven’t really found a completely comfortable response yet.  Although I’ve had many a day when flashes of decking some obnoxious, sneering old lady in the middle of the checkout line have crossed my mind (come on, haven’t we all??), I don’t want to spend my life in fight-or-flight mode, always defensive about the “natural” state of my first-born child.  No matter how disconcerting Alex’s behavior or quirkiness may be to someone else, he has a right to be just where he is and to try his best to get around in the world.  Likewise, I have a right to take him out, to show him the world, and to include him.  I get angry, too– especially in unaccepting, hostile environments– but I finally recognize the ways anger has drained my energy over the years and I know it’s almost always better if I can avoid it.

As for trying to educate, I think that’s great when it’s done well and it’s usually the goal on the tip top of my brain.  I’m a social worker and educator already, I love all that stuff.  I gladly use it when I am feeling confident, secure and up for the daily challenge of the “warrior (so called)” life.  I have been known to scribble out notes with my email, websites, names of books etc. etc. in the middle of the produce aisle or shoe store.  I’ve even been known to leave the store and return later that same day with a book for the cashier or a pamphlet for the waiting room.  But quite frankly, most of the time I’m like everyone else, I just want to get into the store for milk, eggs and bread, and get out in one piece with my sanity intact.  Taking the time to educate others is not something I always have the energy to do.  Besides which, if too much of my attention goes in that direction, my kids can be left feeling as if mommy’s quest to change the world means she loses focus on the people who should mean the most in the first place- them!  To add to that, my sensitive little autistic dude always knows exactly what I’m talking to other people about.  And why should his presence or what he’s struggling with at that particular moment become the center of a “teachable moment” for someone else?

Several years ago when Alex was in preschool, I had a dramatic realization.  It was during Alex’s second tour of duty in the 4’s class (he repeated that class just before going to kindergarten).  The prior year, Alex’s one-on-one aide had coached him through the annual “Morning with Mom” mother’s day celebration.  He had dutifully brought me pastries and presents, sang songs with the other kids, and managed to get through it all without too much of a fuss.  Although he loved me and wanted to please me, he hated every minute of that morning.  The next year, Alex’s one-on-one was busy with her own daughter at the same celebration, so we were on our own.  And Alex refused- simply put his foot down and refused- to participate.

I had spent three years watching other mothers enjoy all the “typical” things about this morning, secretly wishing and praying that one day I could be where they were.  I had all this love for my kid, and all these hopes for his future.  So much to share with him and tell him, so much creativity and excitement to pour into our activities together, determined to create the same happy memories I experienced at that age.  But Alex’s world was different.  All that I hoped for or wanted to give didn’t matter to him the same way it mattered to me.  For three years, although I put on a strong, diplomatic, proud façade, each preschool event tore me up inside. 

But on “Morning with Mom” that fourth year, everything changed.  With no extra assistance to guide Alex to participate with everyone else, we were on our own.  Alex didn’t want to leave the building, or to leave me.  He wanted to be with his mom on this special morning, but he needed me to know that the echoing auditorium and the smell of coffee and the unpredictability of the crowd of people were just too much for him.  So we sat together outside the door, and just watched.  For the first time in four years, I didn’t look back at the other moms who looked at me.  I finally didn’t care about what I was missing because I realized then that all along I had been missing where I was supposed to be. 

So where’s the happy balance between mama lion springing to her son’s defense or shrugging off the rest of the world, and wise owl gently swooping in to impart perspective-broadening words of wisdom to the crowd?  I once read about a mother who had business cards drawn up which stated, “My son has autism.  This means he has sensory & communication issues & may become overwhelmed in certain situations. For more information visit www.autism-society.org.”  I’ve often thought about creating something similar. 

Autism on the Seas (www.autismontheseas.com), a group which provides fabulous cruise vacation options for families with autism and developmental disabilities, gives out beautiful laminated cards which say, “I am, or I am traveling with, a person with autism. Please see the other side of this card for services that help to accommodate my disability.”  On the flip side, three simple bullet points address common dilemmas for folks with autism regarding waiting in lines, crowded spaces and communication.  Then there’s a brief explanation of autism and a web address for more information.

Right now I’m leaning toward a pre-printed easily-shared bit of information which I can politely hand to both the sneering and the cheering onlookers, while at the same time getting down on my knees on the floor of the store to ignore everyone else and be with my boy, breaking through the anxiety of his world, and gently defending his right to be included in mine.

What are your thoughts?

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.

Holland has tulips.

This morning while digging around under the refrigerator for my son’s one zillion lost marbles… (hehe, lost marbles, now there’s another post altogether…)  I came across a little refrigerator magnet my friend Amy brought back from a trip to Holland.  I never really knew anything about Holland and didn’t have any particular interest in learning about tulips and windmills and all that.  Pretty to look at, but no relevance to my life.  Always thinking I’d much rather travel elsewhere. 

Several years ago, when Alex was first diagnosed with autism, someone emailed me a poem by Emily Perl Kingsley called “Welcome to Holland.”  Ever since then pictures of tulips and windmills and Dutch shoes get me all choked up.  One day I want to see the enormous fields of tulips, I want to walk through them and surround myself with those beautiful reminders of all the things in my life for which I am grateful.  And ultimately how glad I am, despite the challenges and grief and breaking points, that I am living my life and not someone else’s.

The poem says it best, you really just have to read it to get it.  Since I don’t know the legal hullaballoo about re-posting previously published material and all that (and I am too impatient to wait to find out!), I am including the nice little link below to take you to the poem.  Hope you enjoy.

http://www.ndsccenter.org/resources/package1.php