Tag Archives: gratitude

Emma Interviews

Emma has been interviewing various family members.  So I wasn’t surprised when she wrote that she wanted to conduct another interview.  Except this time she wrote that she wanted to interview me.  This is part one of that interview…

Emma:  What sparks your imagination more? Words? Pictures? Music?

It depends on the situation.  I have been inspired and moved by all three at various times and can think of examples of each sparking my imagination.  If I had to put them in order of most moving and inspiring, I would have to say visual, whether experiential as in scenic or static pictures, painted, photographs, sculpture, visual art.  But even as I say this I’m thinking of music that has brought me to tears, and literature and poetry that completely captivated, even non fiction writing, particularly memoirs have completely enthralled me.  Each has inspired and sparked my imagination.  I don’t know that I can choose!

Emma:  Who do you wish you could have known and why?

My grandfather, your Great-Grandfather.  He is the one your granma, my mother speaks so highly of.   It would have been nice to have had the experience of knowing him.  He was also an extremely ambitious, smart and I’ve been told, fascinating man who lived a complicated and unusual life.  I would have liked the opportunity to have interviewed him the way you are interviewing me.

Emma:  What taught you more about life – notable happiness or terrible suffering?

In a strange way, both as they are both great teachers and I’ve experienced large doses of each.  I only wish I was a faster learner so the suffering didn’t have to go on for as long as it did.

Emma:  When were you decidedly happiest and when were you easily the most unhappy?

The most difficult time in my life was the years when I was bulimic.  I felt as though I was watching life pass me by as I remained stuck in my obsessive-compulsive addictive behaviors.  It was a terrible time of feeling I was betraying myself on a daily basis and couldn’t stop, though I wanted to more than anything. Sadly that period lasted for about 22 years.  That’s an awfully long time to be so unhappy.

This period of my life is by far the happiest.  I have learned and experience daily the power of gratitude, friendship, humility, family and the gift of giving back.  I am so grateful for the many gifts I’ve been given – Daddy, N. and you, extended family and friendship.  I have so much love in my life.  I am extremely fortunate.  Gratitude encourages misery to withdraw.  People say it’s harder to talk about unhappiness, but I have found the opposite to be true.  Misery came easily to me. Happiness I’ve had to fight for and once I caught slivers of it, I wasn’t willing to let it go.

Emma chose this photo of me to accompany her interview

Emma chose this photo of me to accompany her interview (I figure since I chose photos of Emma throughout her childhood, it is only fair that she now choose the photographs posted on this blog.)

When Time Stands Still

After publishing yesterday’s post, “So Many Kids Are Just Like Me” I added a video of Emma writing those words and more.  I hadn’t added it when I first wrote the post because Emma hadn’t given me permission yet and we were still trying to get the video uploaded, ran into problems with the picture being condensed and other issues.  In any case, for those who want to view it now, you can.  On a personal note, I’ll just add that this video makes me feel very squirmy because it does not capture the playfulness we usually have together, and I’m hyper aware of the anxiety I was feeling while we were taping…  Also the video does seem to be taking longer than it should to load, at least it is on my computer, but Emma has said she’d like to tape more, so I’m hoping we will get better at uploading as we continue.

My friend Alex commented on yesterday’s post about the impact of watching Emma write, as opposed to reading about it.  It was exactly for this reason that we decided it was important to post the video.  There is nothing like seeing in real-time another person writing this way.   No amount of words, no matter how well phrased can describe this process the way watching it in real-time does.

I will never forget that moment at the Autcom Conference in 2012 when I watched a boy, younger than Emma is now, write such insightful and profoundly wise comments  that his mother then read out loud during a presentation.  It was that moment when I thought to myself – maybe, just maybe my daughter has thoughts like this, and we just have to find a way for her to express them.  It makes me cry with gratitude thinking about that moment not so very long ago.  No one could have convinced me then that just a year and a half later we would be where we now find ourselves.

It is inevitable that there will be people who say things like, “well it takes too long” and  “how can this work in a class room?”  But as a parent who has wanted nothing more than to know what my daughter was thinking, who believed despite what the majority of people believed and were telling us that maybe, just maybe they were wrong, watching Emma write is when time stands still.  The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced.  Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops.  It is a sensation like none other.

To my daughter, who works so very hard to accommodate my need to hear her experience of the world put into words, I thank you.  Every single time you do, even though you feel it’s tedious, I thank you.  Gratitude does not come anywhere near my feelings.  There are no words for this.  And I know this is a tiny glimpse into what you, Emma, feel every time you are asked to put into words your thoughts.  Words can’t come close…  finally I understand…

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

The Gift of Emma

In the days leading up to Christmas, Ariane excitedly told me that Emma had written, “I want to write a story about Daddy.” Ariane said it was going to be my Christmas present. Obviously, I was incredibly excited as well. But on the following day Ariane came to me after her writing session with Emma and said:

“This story is going to make you cry.”

On Christmas morning, when I untied the bow around the paper Ariane had rolled up, I braced myself. The story was indeed sad, yet hopeful, wonderful and important, like all of Emma’s stories. It was also very private, and so, days later, I still hadn’t asked Emma if I could/should publish it. Ariane asked her today and Emma said she didn’t want the entire story published, but it was okay to post this section:

“One day there was a man and woman who fell in love.  They eventually had two children, one son and one daughter.  They were very happy.  The daughter was distinctly different, but meant well.  She did not understand many of the ways of her family.

“Her father told her that she was kind and smart.  She ran away because no one believed her to be clever, even though her parents did.  Her father wanted many to realize how smart she really was.  So he told others “do not treat my daughter like a baby.”  People did not listen.

“His daughter was sad, but her parents believed in her, and that mattered more.  She was the luckiest girl in the world.”

I’m so glad Emma feels this way. I wish she were even “luckier” and we had known all these things about her many years ago. I do truly believe that I am the luckiest dad in the world. Like Emma, I feel incredibly sad that I underestimated Emma for so long, that I was so utterly clueless to this entirely different aspect of her, that I could not see and appreciate. But I feel so blessed today to hear and see all these amazing parts of Emma I had never understood.

“Better late than never” is an apt phrase to convey both the joy and sorrow I feel, now that I’m aware of what is certainly only a small fraction of Emma’s talents, feelings, insights, intelligence and her poetic soul. It is also an apt phrase to convey the necessity of getting this message out to the world, something that Emma and Ariane, and so many other autistic people and their families and friends have been struggling so hard to do for so long, in the face of an Everest-sized mountain of misinformation from so-called “autism experts.” The most heinous sub(human) class of these is the “debunking” posse, who seem to spend every waking moment of their lives trying to discredit any assisted communication methods for autistic people. Yet no matter how hard they try, and they do try really hard–they will never succeed in keeping these blindingly brilliant autistic minds imprisoned by their willful and malicious ignorance.

The three best gifts I’ve ever been blessed with are my wife Ariane (who I met at a party on Christmas day 15 years ago!), and my wonderful children, Nicholas (age 13), and Emma (who turns 12 in January).

Emma is such a wonderful gift in so many ways. I could write another (even longer) post just listing all the amazing blessings she has brought to me and our family. But I’ll simply conclude by repeating one of the sections of her story that Emma agreed to publish, because it’s the kind of “better late than never” message so many more people need to hear:

“Her father wanted many to realize how smart she really was.  So he told others ‘do not treat my daughter like a baby.’  People did not listen.”

Maybe they are listening now, Emma. Maybe more and more people will hear your voice and the voices of your autistic brothers and sisters. Maybe all these people will someday be lucky enough to experience the gift of Emma.

Emma showing off her new red beret and her new art work (a collage of relatives).

Emma showing off her new red beret and her new art work (a collage of relatives).

 

Celebrating Gratitude

Emma and I discussed yesterday’s post and I asked her what she thought of the way I’ve described her as an “unreliable speaker.”  I haven’t liked how negative that sounds, though I have meant it more factually, and was not suggesting anything beyond those exact words.  She wrote, “Yes, unreliable.  Mostly talking other words even though not what I think.”

We discussed the comments many have written about believing her and how today is, for many, a day celebrating gratitude. I told her how grateful I was to be able to communicate with her.  She told me I could post some of what she wrote in response…

“Decade of ignorance dead. Deny ideas of intelligence can directly minimize the amount of self-worth one feels. I am grateful many are believing in me.”

Happy Thanksgiving everyone!

This photograph of Emma was taken outside my old studio by Jackie Maillis.  Thanks Jackie!

Power

 

 

Changing Our Thinking

I asked Emma for her permission to talk about language retrieval issues, and specifically to describe some of what occurred during her first session with Soma last week.  She said it was okay for me to do so.  I’m incredibly grateful to my daughter for being so generous with what is personal information.  She has given me her permission, but to leave it at that, would be wrong.  To not acknowledge what this means would be negligent at best.  She is unbelievably generous to allow me to share these things.  I do not know how many of us would be willing for another to share such personal things about ourselves, and the trust she has bestowed upon me, the trust that I will not betray her…  it is something I not only take very seriously, but need to acknowledge.  To say I am grateful does not come close to describing the feelings of appreciation and awe my daughter inspires.  If all human beings could take a page from Emma, both in her cheerful generosity in giving of herself so that others might benefit and her compassion and willingness to see the best in people, even when so many have said and done cruel things to her, this world would be a far better place for all of us.

I wrote about Emma’s first session with Soma ‘here‘.  What I didn’t write about was how after Emma pointed to a letter she was encouraged to say the name of the letter, just as her Proloquo2Go program does on her iPad.  She was able to do so without hesitation.  But when Soma put the stencil board down and asked Emma to say the next letter of the word she was writing, without pointing to it first, Emma would, more often than not, say a random letter.  Soma then picked up the stencil board and again without hesitation, Emma pointed to the correct letter and was able to identify it correctly out loud.  After Emma wrote a sentence she was invited to read the sentence aloud, but could not do so.  This is a sentence she’d just written, one letter at a time.  A sentence she’d created, yet was not able to read.  It is not then surprising that Emma is unable to read a random story out loud, even though she is perfectly capable of reading it silently to herself and fully comprehending it.  See related post about reading aloud, ‘here‘.

To see this broken down, to witness this at the level of single letter retrieval and not a whole word even, made it all even clearer to me.   Which isn’t to say that Emma will never be able to do this.  Perhaps at another point, perhaps once she is proficient in writing her thoughts and identifying a letter after pointing to it, one letter at a time, she will then be able to work slowly, patiently and without the anxiety of feeling expectations are being placed on her, perhaps then she will be able to come up with the next letter before she points to it and from there the next word and on it goes until verbal language can catch up to her written.  But for now, it is imperative that every single person who comes into contact with my daughter understand how detrimental it is for her to have these expectations placed on her and then to have the inevitable conclusions drawn about her comprehension and ability.

My daughter is nothing short of brilliant.  I am not saying this as a biased mother who is basing her thoughts on nothing more than some sort of convoluted tip of the hat to genetics, or a round about way of bolstering my own ego and intellect.  I am saying this because I have seen the evidence.  Since her diagnosis, Emma has been treated as though she were intellectually impaired when, in fact, she is intellectually gifted.  This is, I’m sorry to say, something I am hearing from others.  We have a growing population of children and people who are treated as though they are incapable, when in countless cases the opposite is true.  The onus is on us to change our current teaching methods and the therapies we are employing and to open our minds to the idea that we have gone about this all wrong.  This is what must change.

Soma & Em copy

Beauty in Being

A couple of years after my daughter was diagnosed with autism, a well-meaning acquaintance said to me, “God must think you very strong.”  It was one of those comments you wish the person hadn’t said.  I understood they meant well, I understood it was some sort of convoluted compliment, I understood they meant to be something like supportive, but it felt awful.  Least of all because I have never gained any solace from the existence or non-existence of the G-word, but mostly because of its obvious prejudice to those who are Autistic.  The person then followed that sentence with this next one, which was like a second jab to the solar plexus.  “I could never handle an Autistic child.”  I stood there in stunned silence.

At the time I think I probably looked away and tried to untangle the multitude of feelings that surged through me.  But today, now years later, I have a couple of things I want to say.  Let me tell you about my beautiful, perfectly wonderful, very human, child.  She is like the sunlight that glimmers off the leaves of an Aspen tree.  She is that first ripple that appears on a crystal clear lake, extending outward in ever-widening arcs.  She is the sound of rain on fallen autumn leaves, she is the smell of sage brush after an electrical storm, she is the glimmer of morning sunlight when it first appears rising up over snow capped mountains, she is imperfectly perfect and a gift and yes, a blessing.  And if I’m going to be completely, utterly selfish, I must say this:  she has taught me more in her short eleven years of existence than any book, spiritual leader, graduate class, academic study or person I’ve ever read, listened to or met.

I know Emma’s life will have challenges because of her specific neurology.  I know she will often have to fight harder, prove herself more often, work more doggedly and persistently than her non Autistic peers to accomplish things that many do not even consider accomplishments, but assume are a given.  Yet there are some things she can do and will learn to do that will be easier for her than many of her non Autistic peers.  I no longer see autism as a road block, but more as a different road all together.

Every morning I wake up filled with gratitude for my family.   But it is my daughter, my beautiful, beautiful daughter who has introduced me to a world I never knew existed.  A world that is beyond anything I could have imagined, a world filled with other Autistic people who enhance my life and the world on a daily basis because of their existence.  Emma has taught me the true meaning of gratitude.  She impacts my life in ways I will never be able to fully describe or express.  Gifts are like that.  Strength has nothing to do with receiving gifts.  It does not require strength to see the good in others.  It does not require anything actually.

That is another lesson my daughter has taught me –  the beauty in being.

Em testing out her new pogo stick.  Her record?  62 bounces.  

*Blue Pogo Stick

  • Reflection (whereartandlifemeet.com – Ariane’s other blog)

 

A Word Of Thanks

A friend of mine hasn’t been feeling well.  She had a cold or maybe it was the flu.  When she wrote me I could tell by the uncharacteristic abundance of typos that she wasn’t feeling great.  I thought about her, hoping she’d feel better soon.  And then yesterday there she was, so much better, her old self, witty, funny, silly, and I felt tremendous relief.  I hadn’t realized how concerned I was until she was better.

When I was nine my father went horse back riding.  It was a Wednesday.  He and my mother always went riding Wednesday afternoons.  I was home, sick with the flu that afternoon.  I remember staring out the window of my bedroom, the sunlight far too harsh forced me to turn my head from its glaring light.  My father told me he’d look in on me when he returned.  He never did.  At least not for a long time.  That afternoon he fell off his horse and, as luck would have it, he did not die as, those who administered to his broken body, predicted.  He did not die, but he was never the same.

Sometimes our lives change so suddenly it is impossible for our minds to keep up.  Sometimes it takes years to fully appreciate how one second can change so much.

When Emma was born, I could not have anticipated how completely my life would change as a result of her being.  It took years for me to process, to catch up, to fully appreciate the magnitude of one child’s existence and all that would occur as a direct result.  I could not have imagined how completely her life would change mine.   And now, today, in this moment I can say with complete and utter conviction, her life has made mine infinitely better, infinitely more enriched, infinitely more meaningful.  Her life.  Her existence.  Selfishly, and I do mean that literally, selfishly, I have benefited so completely from her being in this world, it takes my breath away.

In any given moment our lives can change.  Just like that.  And in that moment we have no way of knowing where we will be led.  Awhile ago I made a choice.  I didn’t think of it as a choice at the time, but I see now, that in fact it was.  I chose to view the things that have happened in my life as moments of possibility.  As long as I am allowed to live, each moment is a possibility to learn, to grow, to be open to new ideas.  I can say that easily now.  I understand this.  As lives go, mine has been a privileged one.  My perceived “hardship” is nothing compared to what so many have endured.  I do not say any of this flippantly.  This choice I made has been relatively easy to follow.

When my friend was sick I worried, when my father almost died I was devastated, when my child was diagnosed I despaired, but these things happened regardless of my response.  My response to them didn’t change their occurrence.

In this moment it’s raining outside.  Drops of water plop erratically on the air conditioning unit outside my studio, the clouds drift lazily along, skimming the tops of the multilevel buildings I see outside my window.  The red brake lights from the cars careening along the interlaced roadways create a moving collage as they speed off and on the exit ramps of the 59th Street bridge.  In this moment I am safe, my husband is safe, my family is safe, my friend is feeling better…  In this moment, in this brief moment, all is well and I am filled with gratitude for all I have.  I am filled with appreciation for the enormity of how one life has so profoundly changed my own in ways I could not have dared imagine.  I am humbled, knowing I will never be able to fully repay the gifts she has given me.

Beautiful Emma

Em

 

Dreams, Love, Loss and Gratitude

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

Living in the Grey

No, this post has nothing to do with porn, soft, hard or anything in between.  In fact, this post is not about sex at all.   There will not be any numbers or shades or subtle, implied meanings of anything remotely titillating.  For those who were hoping otherwise, best to move along…

However, I do have a confession to make.  I tend toward extreme thinking.  An example, if someone cuts me off while I’m waiting for the subway, grabbing the one remaining, unoccupied seat, forcing me to stand, I can get into some pretty abysmal thinking.  I am likely to assume the day is cursed, as I engage in heinous thinking about the person who “stole” MY seat, to apocalyptic views about the nature of human beings.  I know this about myself.  I know I have a difficult time living in the soft, greyness of life, while rejecting the glaring, yet far more exciting black and white tragedy or ecstasy of my circumstances.

For years I felt mildly victimized by Em’s diagnosis.  I felt no one really understood or could possibly understand and any who suggested otherwise offended me.  Then I found Autistic adults who were not living the tragedy I had assumed was my daughter’s inevitable future.  In fact, these adults were interesting, smart, some spoke, some did not, others spoke on occasion, some communicated through typing, others communicated through typing with a facilitator, some had careers, others didn’t, some were in relationships, others weren’t, some had children, others did not.  Some have become friends, one in particular has become a close friend, someone I seek out, think about, want to spend time with, look forward to talking to and miss when our schedules do not allow us to connect.  In knowing her I’ve been able to dispense with the “victimized” mindset.  She’s helped me enormously, not just in giving me a better, more tempered view of autism and breaking down some of the more harmful stereotypes and beliefs I once held about autism and Autistic people, but in what it means to be human.

I have gone from feeling a low-grade sense of sorrow for my circumstances to feeling fortunate and grateful for my life and family.  I don’t mean that everything is perfection and that we never encounter moments of sadness or unhappiness, I just mean that I no longer pin my dark moods and feelings on “autism”.  In fact, I feel ridiculously fortunate.  I have met more fascinating people in the past year than I ever imagined possible.  I no longer wonder what life would be like had I not had an autistic child.  I am grateful for the life I have.  I am grateful for both my children and I’m grateful for my friendships.  I find I am living more and more often in that comfortable grey area of non-extremes.  (Please feel free to remind me of this post when I write something less “evolved”.)

And that woman on the subway, who for the past four years has shot in front of me to grab the only remaining unoccupied seat on more mornings than I can count?  I wish her well.  I even gave up my seat, so she could sit this morning AND I didn’t feel smug or resentful; I just kept reading my email.  Who knows?  Tomorrow I may even muster up the courage to smile at her.  Because you know what?  Life is just too damn short.  Besides I’m growing fond of the grey.

Christmas Eve Dinner – 2012