Estée KlarTo Get To The Other Side

I’m clicking my heels this morning. Adam is so happy in his new home that it seems he likes it better than his old one! So all that worry has turned into joy, joy, joy.

This isn’t much of a post except that I had this song in my head this morning and I dedicate it to my Adam:

I am moonstruck in Miami. I kid you not that while this is an Internet image I’ve just found, it just about looks what I saw this evening rising at sunset. My dad, the photographer, got some real shots of it which I may post tomorrow.

It’s a quiet New Year’s for Adam and I, my parents having spent the last week with us here. Yet it’s been really lovely. A year of significant change has settled gently now in the warm arms of family. After we’ve run along the beach,had our haircuts with our favorite girl, swum endless hours in the pool and broken bread together, we have snuggled in our beds… contented.

Adam needed to end his year just like this after being so wrung before he left for Florida. He spent time here first with his dad, and now, of course with his mom. And while we have become a family of a different sort this past year, Adam, I believe, has still found it full of love.

It is well before midnight and Adam went to sleep about an hour ago simply exhausted from sun and sand. We will not watch the crystal ball drop but we have watched the rare Blue Moon rise in the sky tonight — the moon that will only come out in another 19 years. I can barely imagine what life will be like 19 years from now.

A year ago we were in a tougher place as I struggled with separation among Mayan temples during a trip to Mexico. But as I listen to the ocean one last evening before our flight home tomorrow with Adam sleeping beside me as I write this, and take one last peek at that magnificent moon, I can’t help but notice how much difference a year can make. The year 2010 is going to be a good year — I can feel it.

Thanks to everyone who made their comments, who sent me emails and those who stay in touch in all the other ways we can stay in touch these days. I’ve appreciated it. I wish everyone a happy and healthy new year!

A couple of weeks ago I wrote about Barb and Tim Farlow and Justice for Annie. She has been interviewed in Bloom, Bloorview Kid’s Rehab’s magazine in For The Love of Annie. I’ve known Barb for a few years now and the work she has done attests to her love of Annie, her daughter, born with Trisomy 13. Reading her story reminds me why I do what I do for Adam and even the prices I may have paid for it — any parent with disabled child may attest to those prices paid, and most parents would say that they would pay them again. Me too. There is not I price I wouldn’t pay for getting Adam the acceptance, access and rights that belong to him.

In two days I will be reunited with my son Adam for Christmas. As I have been without him for a week, I am starkly reminded of how closely connected we are and how I understand Barb and her decisions because of it.

Tis the season. May we all find our joy, our happiness and remember the importance of this most valuable thing of all. This little thing called love.

I always knew Adam was a tough little egg. As I had written earlier today, he defied the sleep aid in the hospital that would knock, likely, a typical kid on their back. Not my Adam; he was fighting this sleep. Maybe he was determined to defy any hospital hand after the weekend. No electrode would be placed on his adorable little autie head this morning.

I have to admit, this single mom is pooped. A couple of canceled events — of course I was going to cancel them and do everything and anything for the little man — all the worry, sleepless nights and all that social deprivation! We met with unknowledgable Emergency Room staff (Did I say that? I really wanted to use the word graceless), I slept beside him in the pediatric ward for the first time since he was born, I orchestrated (felt more like moving mountains) to get this EEG this week, instead of in February. And NADA. Anyone have a Grey Goose on ice?

Yet, just as it always goes when life seems to feel a little dark (it is December after all), I decide tonight that Adam, who has of late not been sitting very still or sleeping very much, will watch E.T. with me this evening. Movie watching can be a little precarious with Adam. He has been known to leave dark, hushed theatres mid-performance. I think the movies he has sat through from start-to-finish, so far, have been Happy Feet, WALL-E, surprisingly, Charlotte’s Web and that silly one with the hamsters playing 007 in 3-D, whatever that was. At home where he is allowed to roam freely to the kitchen, get his toys, his books, movie-watching can be next to impossible. So sleep deprived? Too bad. There is usually no rest in this house even when we are weary.

I am happy to report that tonight, I managed to keep him with me on the couch — many a wriggle and a wrestle, a salty cracker or two. Okay, maybe three. When he saw E.T. and that typing device, I told him to look. He was, even though he would also wriggle, look at a book, eat a cracker, a banana, a glass of water, and peek often in between. “Look at Elliot,” I would urge, pointing my finger hoping for that good old joint attention. “Look, look at E.T.! Isn’t he cute,” Adam looked at me with a smile, which, if you really had seen Adam’s pain the past few days was lovely, relieving and made me appreciate every moment like this we’ve EVER had. His cheeks seemed fuller, maybe because his colour came back. As he rubbed his soft head into my face, I could still detect the whiff of medicinal smell from the gel they had placed on his scalp. He rubbed his cheeks back and forth against mine for the feel of it, like Eskimo kisses and I laughed. It felt like a bucket of soft feathers pouring over me, but really, it was love. He seemed to enjoy my antics more than the movie, or maybe he just liked it when mom sat there with him on the couch, eating crackers, drinking water, and fun-wrestling in my arms.

“Home, home, home,” he said at that point in the movie when the music billows, the volume rises, and the story ends. Home indeed. There’s no place like it.

“Barely awake at the breakfast table, I let precious time go by…”

Hovering over the small stainless frying pan I cook his eggs, sunny side up. He always likes them sunny side up. I think it started when I started making them into “Baby Einstein Eggs,” I would call them where I would place his favorite vegetables and transform two eggs into eyes, then glasses then thinly sliced peppers into cow-licked hair.

“Baby Einstein Eggs,” he said back deliberately, his voice still sweet and squeaky with staccato rhythmn as the words were hard to say. I watched him look at the eggs with such delight, moving his head closer and then back again like the humming bird I always call him, his hands flapping just as fast. I remember now because the eggs have lost their appeal. When did it happen?

He goes to the door now on his own in the morning. He gets his shoes and puts them on before I ask him to. He has even taken to putting on his coat, ready to start his day. Ready to go outside before I am ready. Ready to leave. His assistant arrives to take him to school. He grabs his lunch bag on his own, no need to remind this day. He trots out the door.

“Good-bye, Adam,” I say, hoping the desperation is hidden behind my eyes. “Have a nice day. I love you!” He turns and smiles at me.

“Bye-bye, yes.” The yes is the punctuation mark. It’s the you want me to say good-bye to you so here it is, kind of yes that has become his signature. It’s the way I know he acknowledges that he must say the same thing back, or that he’s heard me. He doesn’t use the yes when it’s a sentence all of his own making. Those sentences are few, but so precious.

When I pick him up or when he arrives home by another, he is so happy to see me and it makes me want to sing. I am relieved to see him. He grabs me and hugs me hard. When he leaves — now to school, to his dad — or later to his life or maybe even his wife, it will be exactly the same.  He grows differently but also like any other. They change, they become independent or maybe even quasi-so, but things do change. Every morning seems the same. I wake. I’m tired. Barely awake every morning, I try to remember never to forget. For the moments, as they should, are slipping through my fingers all the time.

You must have known this was coming. My post-Halloween cooing over the love of my life. Every year is just a great big new point at which we can re-evaluate with awe how far we’ve come. We are all so interested in measurements of all sorts and I suppose we all take some comfort in it while we can. At the same time many of us despise measures that lead to exclusion and prejudiced acts by others towards us or those we love. But if my photo albums of Adam since birth aren’t some kind of measure, I don’t know what they are. They are the delightful kind.

Holidays like Halloween, New Year’s, birthdays and Xmas are all markation points. When it comes to our kids, we remember Halloweens-gone-past, and we all keep photos of each year’s costumes. Adam is still young enough that I remember his first hand-made bunny costume sewn meticulously by his grandmother. I remember the successful “Alphabet Boy” costume I made him two years ago. I had not-so-meticulously sewn Adam’s favorite letters onto old clothes. Last year, Adam had requested that he be a Cowboy. This year, I was an impatient mother and chose Adam’s costume for him as he likes the word Jack ‘o Latern, so I assumed that my rushed act of choosing his costume would be okay.

At 5:45 p.m. the dressing started. I called Adam into the kitchen and held a mirror so he could see the eyeliner pencil I hurriedly used on his face which he tolerated, but didn’t love — he squeezed his eyes and curled his lips as the pencil ran around them. Yet, he seemed intrigued enough to let me finish by watching his face transform in the mirror. Then, I found an orange pair of track pants, asked him to put them on and then proceeded to squeeze him into the plump orange sphere. He received an orange hat to match with a cute little green stem to top it all off. I took him to the closet mirror where he studied himself a little grumpily. He cinched his face a few times, watching the makeup move with his face and then suddenly turned to me:

“I want to be a cowboy,” he said.

One full-out clear sentence. Remember, my little guy is not fully verbal. He really struggles with communication. Not only was this sentence perfectly articulated, he was also a little pissed off. He clearly did not like his pumpkin costume that I had arrogantly chose for him. And yet, in Adam’s own seven-year-old gracious way, he accepted it. Mama was in a hurry and he was not about to argue much more than shoot towards me a few angry Adam-style eyes (which means even Adam’s anger is sweet).

“Let’s go, let’s go Adam,” I said with a dressed-up enthusiasm. It was exactly six o’clock and the sun had just set. Did I say I had to leave in order go to the Giller Prize finalist readings by 7:15?? You see, I wasn’t expecting what was to come. I thought that our trick and treating would last about two homes based on past Halloweens. When Adam was first out a few years ago, he assumed that he could enter every home we approached. And when he could not, he became upset. By his second “active” Halloween as “Alphabet Boy” he really enjoyed staying home and handing out the candies to the other kids. In the Year of the Cowboy he was not so enthused and didn’t want to go to any homes save for an entertaining one up the street — that ONE home in every neighbourhood that’s totally over-the-top awesome.

This year was a different matter. We went out. I taught him how to ring the bell on his own as I slowly stepped a little further and further back each time because Adam didn’t show any resistance at all to approaching the homes in our neighbourhood. I showed him how to hold out his Jack-O-Lantern bucket and say “trick or treat” and “thank you.” I told him to pick the homes with only the pumpkins and decorations at the front. And then he didn’t want to stop. From house to house we went and while I was ecstatic (which begs the question why we parents are so bloody obsessed with our kids enjoying this silly holiday) that he was enjoying himself (ah, that’s why), I kept looking at my watch! Why oh why did I have to go to some event on Halloween!?? Not this Halloween!

But that’s how it always works, doesn’t it? It usually happens when we are simply not expecting it to happen. And thankfully, Adam’s bucket was full by 7:15. Mine, as always because of him, was overflowing.

Many of us have read Oliver Sack’s Musicophilia and I attended his lecture here in Toronto a couple of years ago when the book was released. Neuroscientists study the innate rhythm of our brains, citing that no other species possess this capability. Apes cannot synchronize if one ape taps a stick. The other apes cannot keep up the rhythm. So this is innate to human beings and perhaps a way we have evolved. Our ability to socialize, to gather as communities have been largely facilitated by this ability.

Young babies can understand musical structure before they understand language. Alzheimer’s patients can remember emotions and early memories, as well as right/wrong notation and words of music even if every other faculty is gone. In other words, music is the last thing, the only thing and neuroscientists are looking at this aspect of our humanity.

For Sting who had an MRI done in order to study aspects of this, when finally looking at images of his brain after it had been evaluated post-testing, he became a bit undone. He said he didn’t want to know the inner workings of what is otherwise a mystical, spiritual experience for him. While interesting, dissecting his musical brain was unnerving.

It is also said that by learning a musical instrument, we may be able to ward off Alzheimers. Similarly, a child will increase their I.Q. by 7% by learning a musical instrument.

Adam is learning to play piano, and like all people, my autistic little boy loves music. He can sing better than he can talk. He tries, although motorically challenged, to keep a dance rhythm with his body, but is otherwise a wonderful drummer. Rhythm, be it through music or rhyme has composed a major aspect of our lives in just basic communication in our home, and I’m lucky because it also comes naturally to me as I have been a singer, have learned many musical instruments in my life (violin, guitar, flute, piano, recorders…). But use it or lose it. I’ve forgotten how to play what used to come so easily, although I can pick up tunes by ear very easily using the piano. We sing “home-made” opera in our house — sort of a daily dialogue in a Bugs Bunny/ Wagnerian way.

Use of music and rhythm is extremely important for any of us to use language, and it is highly effective with non verbal people. It makes me wonder why we don’t discuss and utilize this so much more. We love to make utter fools of ourselves singing our home-made opera in our house — from asking for the juice to brushing our teeth, there is no shortage of home-made songs for every occasion. And even though it is I who makes the major fool of myself the most by doing it, I think Adam enjoys it as he tweets back my silly tunes in his smaller, more cherub voice. I also think if we all did a little more of it, we all might be a bit happier as well. Music does ignite the pleasure centre of our brains.

Adam had a more verbal day today. I guess that’s normal lingo for a family with an autistic child who has real trouble with verbal communication. One his “more verbal” days, he can get out phrases and sometimes full sentences. He can take his teacher to the closet, grab his lunch bag, put on his velcro shoes and proclaim “go home!” twenty minutes before dismissal. He can come home and reach for his toy alligator from the shelf and then find a smooth concave shell and say to me “crown it.” When I acknowledge that he’s pretending it’s the Alligator King from Sesame Street (yes he can watch the video about 500 times a day if we let him), Adam is very pleased. He crowns his pretend alligator a few times and moves its mouth as if he’s trying to help the toy talk. I pause to wonder what Adam thinks as he manipulates the mouth with no sound.

I imagine all the things he wants to say to me on tougher communication days, and how frustrating it must feel. I imagine all the questions he has to ask his parents regarding their recent separation that cannot yet ask, though I am clever enough to know that he thinks them and I have to behave as if to answer them all for my behaviour sets the tone for everything. I have seen and known enough to witness that he can follow every instruction and he understands more than he can express. In the movie Awakenings, Dr. Sayer asks the mother how she knows what her catatonic son is saying. She replies, “You’re not a mother. A mother knows.” It is true in my home as well. For seven years every sound, every move, every expression and I just know. Sometimes I have to be careful to listen because I actually may be paying more attention to all those other subtle behaviours instead of that speech he tries so hard to get out. I suppose my actions also speak louder than words as they model for Adam and they may have become just as important as facund explanations. Perhaps if we were observed carefully as a unit, others would see this daily orchestration that we have come to take for granted as much as those who speak take what they say for granted. In our house, the saying “actions speak louder than words,” cannot more more true.

Adam also has many abilities in helping out mom and dad, for he loves us both so much. I think it’s just one of his very precious gifts to us, and that he gives to others (although mom and dad are in that exclusive category). I know that Adam is a wonderful, loving boy who will give this gift to many during his life and I know he will bestow the new people in his life with that blessing. I guess, in a very special way, he is a lot like the king’s seventh son. In my opinion, he deserves my crown, and I hope he won’t mind the dents.

There are a few good lines mulling about out there. I particularly like “you know when you’re happy when you are no longer looking for happiness.”  Ever notice that when you’re happy, you didn’t really notice at all? It was sort of, well, effortless?

In this autism world, or any matter of the human spirit, we are really involved with the meaning of things and what will bring us joy and happiness.  Every time we write our lists and ponder our life’s purpose, we can feel overwhelmed. While I’m certainly for lists, I think they are simply like little messages we have to write, put out there and then tuck in the wall. Once the intent is made, then leave it, move on and begin the work. While intention is how we wish to live our lives everything else can happen. And it will.

As I’m re-reading Viktor Frankl’s Man’s Search for Meaning this week, I’m reminded of some very important things. First, is that like the name of this blog and it’s consecutive mantra about “struggle,” I suppose I was also brought up with the idea that struggle will always be a part of my life and that happiness happens when we aren’t paying attention. It can even happen during the most catastrophic of circumstances. Frankl had cited Nietzsche’s ideas that we all have to have a “why” in life to get us through. He said if we have a “why” then we will certainly have a “how.” For those in the concentration camps during the Holocaust, Frankl of course ponders the meaning of life during one of times most horrible of human travesties.

Frankl understands life’s inherent blessings among tragedy. He sees goodness in the group that has done him harm: “Human kindness can be found in all groups, even those which as a whole it would be easy to condemn. The boundaries between groups overlapped and we must not try to simplify matters by saying that these men were angels and those were devils.” He refers specifically to the Germans and notes that groupings of “good” and “bad,” does not fully explain or accept the expanse of humanity. For when one condemns one group, they are also denying that they are also capable of the same atrocity, for we are all made equal. Once we are able to understand that we all carry the same capabilities of good and evil within us, we can become compassionate. The modern saying is “for every finger we point, there are three pointing back.”

Perhaps it would serve us all well to practice a little reflection when we debate the “rights” and “wrongs” in autism politics. It would serve us well in every aspect of our lives. Some of us in this world hold on so firmly to our beliefs that we don’t see many other realities.

Musician John Mayer writes:

Belief is a beautiful armor
But makes for the heaviest sword
Like punching under water
You never can hit who you’re trying for

Some need the exhibition
And some have to know they tried
It’s the chemical weapon
For the war that’s raging on inside

Everyone believes
From emptiness to everything
Everyone believes
And no one’s going quietly

There’s a lot of autism “belief” out there and it’s important to have science to assist us in proving many things. Also, it’s important to know. To know that my son, without proof, is a worthy, valuable, lovely human being who has made contributions in ways he is too young to understand.  It sometimes disturbs me that as much as science is important to prove harmful beliefs incorrect, it is similarly exhausting to have to prove one’s value through scientific or any other means.

In this world of human difference, belief, disability I would like to take a moment to defer to Frankl who says,

” What [is] needed [is] a fundamental change in our attitude toward life. We had to learn ourselves, and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those were were being questioned by life — daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual… and each differs from man to man….When a man finds it his destiny to suffer, he will have to accept his suffering as his task.” (Simon and Schuster edition, 1963, pp. 122-23).

And so perhaps it is not really worth our time to discuss what makes us happy and brings us joy as much as it is to accept the responsibilities and events that enter our lives, and move on with them with an open and willing heart. Hmm, just that simple thought makes me happy.

It’s summer time in the city and Adam and I are outside! After long months of cold winter days, we are re-discovering Toronto. Some call it the “stay-vacation.” Economic downturns and people have to fend for themselves. And it’s a good thing for community-building too. We are discovering that Torontonians are a nice bunch of folks.

By having this new-found fun, I’m having severe email anxiety. I have a Blackberry, an email address “attached” to my computer separate of my blackberry, I belong to other blogs and groups. The land-line hardly rings anymore and if it does, it’s probably just someone asking for money. My Blackberry has become an indispensable tool for “keeping connected,” with my friends…”how are you?” “need anything,” and wanna have lunch,” stuff. Should we have the fortunate chance to have room in our schedules to squeeze in a lunch, we just might get connected in a way that most of us so long for.

While e-communities can be interesting, getting out more often makes me want to chuck it all. If it weren’t for Adam and being available for him during the day, I would not have a Blackberry — I think I’d just make more calls. I’m, to be frank, fed up with it all. One email address would suffice — one I could check once a day. Me, the text-queen has had enough. Time to throw out (wait, aren’t we doing too much of that?) the e-waste and have some conversation.

Which is why I wonder why I’m here to tell this little thought-of-the-day on my blog except that I’m a compulsive writer (if not in my notebooks, my sketches of thoughts may turn up here).

Me, a writer and reader with my head down so enjoys looking up. There’s too much life to live, especially in the summers. With Toronto festivals in full swing, like Luminato, there’s too much dancing to do! Adam seems to be enjoying it too:

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