Communication and Assumption

"Either it's a hoax, which it isn't, or we are grossly underestimating tens of thousands of people."
                                                     -David Mitchell, translator of The Reason I Jump

It's as innocuous as it is common.  "He talks so well!" people gush over my youngest son.  Mostly because he is small for his age and they assume he's younger and therefore advanced to be speaking in sentences.  No harm is meant, I know, but I cringe every time I hear it.  Yes, it is adorable and humorous and downright helpful when our children learn to talk and begin expressing themselves.  But I'm also the mother of a child who doesn't talk well, who has never been gushed over by strangers.  I struggle because every day I'm confronted with this misplaced belief that verbal communication equals intelligence, that a child who looks away and makes sound effects when asked a question must be less smart, less capable than his brothers who are able to engage in conversation.  But it's simply NOT TRUE.

All of my children are beautiful, smart, capable, lovely people.  They each possess skills and they excel in certain areas, just as they struggle in others.  But if they can communicate in the way we understand, in the language and social context that most people use, then they are perceived as having worth.  Yet words aren't the only means of communication.  Often words are the least reliable way to communicate.  There is behavior.  There are gestures.  There are emotive sound effects and pictures and facial expressions.  And this is why autism awareness and acceptance are so important to me.  Because my wonderful son belongs to a group of people who are continually underestimated and deemed unworthy of time and expense and humanity.

This is something that I have learned over the years, as I have read and searched to understand my son.  I first found it in the works of Temple Grandin, whose memoir is aptly titled Thinking in Pictures.  She doesn't think in words, but sees pictures instead.  Another author, Daniel Tammet, describes numbers as a series of images.  His book, Born on a Blue Day, is full of illustrations.  Just recently I finished The Reason I Jump by Naoki Higashida, who describes memory as a circle and it finally clicked into place.  For James, words are a second language.   There are some days when he speaks very well; his words are plentiful and his expression is clear, and on those days it is all so blessedly easy to understand each other.  So why are there other days when he doesn't seem like he wants to talk at all?  Why does he respond to me differently and return to his large vocabulary of sound effects?  Because that's his first language.  When he uses movie quotes instead of his own words, it's the emotion behind them that he is trying to express.  How I wish I could be inside his head on those days, to really understand what it means to think in pictures or circles or colors.  It reminds me of my trip to Europe.

My dad loves to tell this story, although he wasn't there, and when he does it makes me feel very stupid, which is not a fun feeling.  After flying into Germany and spending a few days with friends there, my mom and I took a train to Paris.  It was the end of a long day of travel, of navigating a new city to secure a hotel for the night, of arguing with my mom, and finally we sat down in a restaurant, ready to eat and relax.  We perused the menu (in French) and I tried my best to translate for my English-speaking mother.  We placed our order, but Mom was displeased when the food came out and our waiter placed a raw beef patty in front of her.  She looked at me in alarm and said, "I'm not eating that."  And so I turned to our French-speaking waiter and opened my mouth to explain, only the words wouldn't come.  I had studied French for years, to the point that I was fluent.  Sometimes I even dreamt in French.  But we had just been surrounded by German, a language I am familiar with, but not as well, and I was tired.  The meat needs to be cooked, I thought in English.  Kuche, I thought in German.  Hot, in English.  Kitchen.  Pan.  Skillet.  My mom was getting agitated that the raw meat was still sitting there, the waiter's forehead was creasing deeper, and I could not for the life of me think how to communicate in French.  I want to say that it took hours to sort it all out, because that's how long it felt, but it may have only been five minutes.  Eventually, the meat was taken back to the kitchen and returned a nice, brown hamburger, and the rest of our stay in France went smoothly.  Now I ask you, am I stupid?  Because, of the three languages I was capable of speaking in that day, the only two that came to mind made no sense to the waiter?  Or is mastery of language a tricky skill for anyone, and in moments of distress, difficult to access?

Naoki Higashida was 13 years old when he wrote The Reason I Jump, and was described as non-verbal.  Meaning he was unable to speak to communicate.  Yet he could write a book that was both creative and informative when given the right medium to do so.  It makes me wonder how much uncovered potential my own autistic child possesses.  And beyond our own community, it makes me wonder how this narrow view of communication affects other people who don't speak well, people whose voices are limited due to physical impairments like being deaf.  What are we missing by not seeking out and supporting those who aren't like us?

It was a huge deal the first time James told me he loved me at the age of six.  Of course it was.  But it wasn't new information, just a new way to communicate.  He had told me thousands of times that he loved me, by touching my face, by kissing my cheeks, by inviting me under his dark blanket and showing me his toys, by sitting on my lap, by sleeping on my lap, by holding my hand, by running into my arms when he was scared, by pointing out fans and dogs and the moon.  When he said, "I love you Mommy," it took all my strength not to say "I know" and inwardly exult in my Han Solo moment, but to say, "I love you too."  And as much as I love hearing him speak my language, as important as it is for him to learn these words to succeed in this world, I'm learning to speak his language too.  Because the best way I can say "I love you" is to meet him halfway.

This is a link to a website that features Naoki in a video entitled "I Write, So I Am Alive", as well as other videos explaining Facilitated Communication.  Watch, it's fascinating! http://soe.syr.edu/centers_institutes/institute_communication_inclusion/about_the_ici/Videos.aspx

In the Stillness

At peace in the quiet of a snowy day

Things have gotten crazy once again.  Every day, the activity in our house ramps up until 8pm.  Its a steady beat, like a primordial drum calling the children to be louder, louder, run faster, faster, until we separate them for baths and jammies and stories, and they finally settle down for sleep.  I get caught up in the busyness.  Sometimes I am running with them, dancing and throwing or shouting at them to keep it down, how's a person supposed to think?!  But whenever I need a break, whenever it has become too much, and whenever Chris is there to handle the clamoring hoard, I go look for James.  Because no matter how many kids are here, how much noise is being made, my sweet boy has usually found a quiet corner for himself.  I join him there, in the stillness, and he helps me quiet my raging insides.  It is usually soft, with blankets or sleeping bags or pillows hiding a hard surface, and dark, with shades down and lights off and a nice dark blanket pulled overhead like a cocoon.  There is no music, no chanting monks, no TV or video games or laugh track.  Sometimes he will arrange his body so that he can lay his ear against my stomach.  I think about what he is hearing, the gurgles and splashes of fluids following that downward course we learned about when the Magic School Bus went inside Arnold.  Sometimes he wants me to read to him.  And so we look together at the stories about starfighters and pigeons and Lego cities.  Sometimes, when the mood is just right and the day has been successful and I've quieted enough to really listen, we have a conversation.  A real, honest-to-goodness chat, with the whole back and forth, question and answer thing that other people seem to come by so easily, but for him I know is the hardest thing he will ever do.  They are never long, our voices are always hushed, and an errant child storming in will inevitably bring about its end.  But I cherish our time together in his quiet space.  He finds and protects it with all the tricks in his bag.  And I wonder at this ability he has, to be so still, this meditative silence that I could never achieve even back when there was no one else around and no big answers to find, no matter how hard I tried to shut it all out and just be.

Finding a quiet place at the park to throw stones 

He's always been this way, from the moment he was pulled into this loud, hectic world.  I just never knew why.  Why he would fuss in the house, with the tv on or people over, and when we stepped outside, into the void of a summer night or winter afternoon, he became still and peaceful.  We've always been fortunate enough to live on quiet streets, with a decent distance between our house and the neighbors, so that the only sounds we hear are the birds in the trees or the occasional plane flying overhead.  We've spent so much time sitting on our front stoop, laying on a blanket in the yard.  I slow my breathing, taking deep pulls and filling my lungs, and then slowly exhaling.  Sometimes outside isn't a haven of silence, and I remember so well the Christmas we were at my parents' house, opening gifts and laughing with my sister and her husband, and James, almost three years old, took refuge in the curve of the sectional couch.  He covered himself with a blanket, and when we peeked in at him, saw that he had gathered balled-up wrapping paper to give a sound-proof layer to his hideaway.  It all began to make sense once we learned about sensory processing, overstimulation, why the times when many of us are happiest, surrounded by our friends or loved ones and talking and making quite a big noise send him into a tailspin.  And so this is another aspect of special needs parenting which we have continued to get better at as the years progress: we give our son what he needs.  We attune, we learn, we listen and he tells us how to make these times better, how to get through the holidays or the afternoon or the church service together.  I realize that I've gotten more comfortable in this role, more confident that I can give him what he needs, that we can experience life as a family and not hide out all day.  If it takes noise-muffling headphones or a thick quilt or a walk around the block, I will make it happen.  This is the gift that autism has given us, the opportunity to be still.  Too many times we focus on the difficulties, the challenges, but truly TRULY I feel blessed to have a child who needs and creates this stillness for us all, and I am happy to join him in it, to practice more being and less doing.

This I Believe

" And we are not perfect.  We say the wrong thing.  We grow and we change and the words we spoke in the past are words of which we now repent, but that is the nature of sanctification and there is no one exempt from that process."  -Fabs Harford

I believe that words are important.  I believe that what we say and what we write can affect people, and it is our choice to encourage and build people up, or tear others down with our negativity.  So often, as I was growing up, my parents would admonish me to THINK before I spoke, usually as a follow-up to something insensitive or inappropriate that had just come out of my mouth.  I would sigh in exasperation, because the challenge to evaluate all spoken words before enunciating them, and discarding the unnecessary ones, seemed too much for me.  I didn't want to stop long enough to consider my words, I wanted to get them out, to share them with others and join in.  People gave me labels: I was cynical, sarcastic, jaded.

I often wrote as I grew up, I filled notebooks with thoughts and observations.  I still wonder if anyone is ever going to read those words or if they will get thrown away at some point, without being seen by the world.  I want to have influence, I want to share my mind and my feelings, but I lack the confidence that I have anything worth saying.  Then I started a blog.  I began not knowing what to write, and the first year I think I wrote 3 entries.  My husband was the only one to read them.  The next year I posted just once. 

It was surreal to find myself, this lover of words, the mother of a non-verbal child.  I yearned for the day I would hear him speak, when we could converse and share our words and learn more about each other.  It didn't come.  The doctors and the speech therapists and the educators all told me the same word: autism.  They gave other words and phrases, like developmental delay and no imaginative play and isolated and early intervention.  We started therapy and preschool and while he struggled to find his voice, I did too.  I couldn't figure out how to tell people what I was coming to terms with, the reality of having a son with a "disability".  I found myself dropping out of the mom-petition, avoiding playdates and birthday parties and listening with jealousy as the other moms compared their children's milestones.  I wondered if my child would ever use a toilet, make a friend, learn to read or write his name, much less play on a basketball team, speak Spanish, or write a play for his third grade class to perform.

I was scared for my son to receive an official diagnosis.  I was afraid of that word, afraid of what being associated with that word might mean for him.  Would he become a target of bullies?  What other words would they call him, when they saw him riding the "short bus" that is no longer short?  How many times had I made jokes at others' expense, how many times had I declared something "retarded" in my adolescent speaking-before-thinking phase?

But I came to realize its not a word spoken by a doctor in a white coat that I am afraid of.  Its what we are teaching all of our kids about words and about how we treat people who are different from us.  And that's when I found my voice.  I began sharing my opinions and stories and family with the internet, simultaneously afraid that no one would read and afraid that everyone would.  I found, through blogging, that I could form my words, gather my thoughts, and take the time to present an idea without being offensive, hurtful, thoughtless.  Although it can often be a place where people comment without any regard for the fact that a person is on the other end, reading their words, for me, the internet is the place where I finally learned to think before speaking.  I can look at a person's profile picture, I read about their struggles and hopes, and I take my time forming a response.  My hope is that what comes out is different, so that people perceive me differently.  So that they use words like "loving" and "encouraging" to describe me.

Another benefit of speaking boldly for my son and others like him, is that he is now finding his voice.  He is speaking and learning to read; he is expressing his needs and communicating to others.  One of his favorite stories is The Lorax by Dr. Seuss.  I love to hear him loudly proclaim, "I am the Lorax...I speak for the trees, for the trees have no tongues."  Where I once saw myself as speaking for my silent son, now I wonder what voiceless, invisible group he will speak for. 

I Heart Mom

I've struggled to write about my mom.  Its harder than Dad, because that relationship is so easy, so natural, so straightforward.  But mother/daughter?  Its complicated.  It goes up and it goes down.  Emotions run high and the temper I hate that I have was not inherited from Dad.  I can match her scream for scream, and did on many teenage occasions.  I can pick her apart and say, not going to be like THAT.  But in all the ways I feel that she doesn't get me, she also DOES get me.  We are different, yes, so much more different than my mom and sister.  And then there are days like today.  When she really sees me all the way through to my very inner most places, and she loves and accepts what is there.  We are not alike; I want to just hold it all inside and make it disappear.  But she doesn't give up on me, she keeps coming again and again.  Not like an attacking army.  Like a persistent tug.  She comes again and again, until I am ready, until I can no longer keep it in. 

I didn't want to say it out loud.  That would make it real, and I have tried so hard for so long to make it not real.  I didn't want to deal with it, to face all that it would mean.  My mom gets that, she lets me hold on to it.  She doesn't rip it from my hands, because forcing it out would be just as traumatic as it happening in the first place.  But she remembers me.  And this is what the shy child, the quiet one, needs most in a mother.  Someone who accepts the silence but doesn't forget what is not being said.  In all the real ways, the ways that truly matter in a lifetime, I have the best mother.  One time she forgot that I don't like baked beans, and I felt so frustrated.  Why couldn't she remember the very specific taste preferences that were mine and not her own?  And why do I still remember that?  Ultimately, how deep of a betrayal is that?  When you consider the burdens she has carried for me, the difficult decisions she has made and the stressful conversations she has had on my behalf?

Thank you Mom, for never giving up, for never forgetting, for always being ready to hear, even when I wasn't ready to say.