Estée KlarTo Get To The Other Side

“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.

I’m hard pressed to ever state that Adam really can’t express himself. I mean, I find myself saying it some days in terms of verbal communication. But really, he is an expressive guy. If I were to take an accounting of his “expressiveness” and his “ability to communicate,” I might end up with something like this:

1) He is so affectionate, but not to everyone. He is discerning in who he expresses affection to;
2) He only really wants mom and dad and gives us extra special hugs and tends to shun others away as he wants us all to himself;
3) He knows who his family is because he has variants of affection for different people;
4) He cries when he knows he has broken or made a mess of something;
5) He cries when he thinks he’s upset someone, or that he knows someone is upset;
6) He dances when he’s happy (not the happy dance, but real dancing);
7) He sings what he can’t say — when mom and dad were together with him the other day, he sang Beyonce’s “I’m a Single Lady” — a song that came out at the time of the separation. Here I will add a little bit of my memory of other children I knew when they were little who dreamed of their parents back together again. I imagine this is Adam’s way of telling us the same and that he recognizes the current situation;
8) He laughs at funny things — he laughs at my jokes and he laughs when he’s trying to make me laugh;
9) He talks more and more each day;
10) He types more and more (independently) each day;
11) He reads out loud and understands what he is reading;
12) He knows how to manipulate certain people who all respond to different things. He knows how to “work it”;
13) He uses a word to describe what he is looking at (i.e.; he may type sock and then I can help him build a sentence to correlate with the work GAP he is peering at on his sock so he can type, see and say).

I could go on but it’s late and I’m tired and I’m just basically trying to say how Adam is such a Mensch to me in every way. He works really hard, he wants to do things, he loves people, and his will is strong. I see and experience how hard it is sometimes for him to stay focused and I’m still very proud of him. When his fabulous assistant (she has been with us for five years now and counting), told me that he went wild for Carmina Burana at school, I smiled. I went wild for Carmina Burana when I was young and consider it to be my foray into classical music because it’s so dramatic. Adam danced and moved his body to the music. When I see his notebook wherein Adam is struggling to draw, he is specific about what he is drawing (his assistant writes what he has named his characters that he struggles motorically to draw). And all I can do is keep trying hard with him, to learn, to keep an open mind, to provide him various modalities with which he can work and express himself.

Expression, thank goodness, comes in so many colourful forms.

I take a moment to talk about Adam, which I do so little of lately. He has been the inspiration for this blog and all my thinking and rethinking about autism.

He deserves a great deal of kudos for turning minds around. He goes to camp and he can make everyone laugh and smile. He comes home at the end of the day, and I am told that everyone loves him. His smile can brighten an entire room.  Often, I am given credit for this, but it takes two. He was born with the affable disposition. Yet, I do often wonder how, if I’d kept him behind those closed ABA doors (the style of ABA at the time of Adam’s early instruction), if he would have remained his true self.  It is a question I’m sure all parents ask themselves, and there is even a book out which follows children with various backgrounds to adulthood:

Fragile Success
Ten Autistic Children, Childhood to Adulthood, Second Edition
By Virginia Walker Sperry, M.A.

It seems like an interesting attempt at trying to create proof, to distill what makes an autistic person “successful” in life, yet success is also in how we measure it.

I, for one, have measures that seem more akin to a revolution that’s happening right now. My measure may be more along the lines of those who reconsider behavioural economics — a movement away from growth (the thinking that image and objects will make us happier) to the things we do and the way we think that make us happy.  Like all parents, I want Adam to be happy. I want him to learn. I want him to learn discipline without losing his joie de vivre. I want him to want things in life that will make him happy. So far, I think we’ve been successful. He has a natural wonder and curiousity. He still has difficulty with speaking, but he tries hard to string his words together. His drive often amazes me. I do not think the word failure is in our vocabulary.

I do not know if we can measure what makes autistic children become “successful” autistic adults. Like all of us, we are born with personality, to different families with different circumstances.  Adam reminds me of the happy-go-lucky young girl I was once. I’ve suffered my blows, but Adam continues to bring me out of any depths that may tempt me to wallow. He needs me. He thrives on my happiness. For now I am taking heed of the oxygen-mask analogy. I’m taking good care (finally) of myself. I am losing the weight of the world that I chose to once carry. I am lightening up in every sense.

Here is Adam today as “Super Boy,” going to camp.

Adam, you are indeed super. You are my hero.

There’s nary a moment when I won’t find Adam engaged in some new passion. Unlike the so-called “static” nature of supposed autistic interests and fascinations, I find Adam’s interests variable and ever-evolving.

Lately, he loves puppets, faces, art (he’s an excellent artist), making faces, swimming, the ocean, and most of all, reading cookbooks and then, cooking. He has always enjoyed cooking, but now that he has better coordination, cooking becomes more fun. I thought of this when I traversed upon this website: http://www.mywire.com/pubs/Lets-Cook/

Adam deciding what he wants to eat at Tony Roma’s

We’ve always wrote out the recipe in visual form for Adam to follow, and I know many parents employ this structured approach which works very well. For those of you who are new, you might want to check it out. It’s a good step to break down other creative projects as well, and might give parents some ideas.

Adam used to be the young boy who wouldn’t have much of an attention span. He used to “obsess” over his alphabet and numbers, and love to watch videos over and over again, and we expanded his interests by using his own and also allowing him to just be with his own. While he likes the alphabet I once never imagined, in his early days, when he wouldn’t need the alphabet anymore (in the calming sense or as a restricted interest). I could have obsessed over this as a parent and let it (excuse the pun) eat me up. Now, we watch little tv and spend our days reading, making things, going out, going to the theatre, playing and visiting friends, discovering new toys and yes, in the pool of our activities, there is still a lot of swimming.

I keep wondering how to relay this to a new parent of a young child who has just received an autism diagnosis. How do you talk to parents about how life will be? It is a question that many of us “older” parents think about a lot. There is no way, I have concluded, to offer advice except to speak of our own path and acknowledge that everyone has their own journey. My life with Adam is different than I thought it would be before I had Adam or before he was diagnosed. Yet today, as we’ve simply lived our lives, we no longer fret our days away. We just do. We just live. Only time and learning to live with Adam as a member of our family who as GIVEN so much to us, has it mellowed me. One could read this journey by going back to the early days of my blog as I observed prejudice, among so many other injustices. There comes a point, unless it is outright cruel and pointed, that one becomes less angry and understands that the only way to social justice and acceptance is to carry on with a level of determination and constancy.

To live peacefully is our ultimate aim. To accept autism isn’t to accept in order to cure or “recover” (a silly word used as a curtain to hide the word “cure”). Acceptance means to leave what is and get on with living.

Hmmm… I wonder what I feel like cooking tonight….

I have the sequel to Adam’s doggie conversation of last week. If you remember, he looked me square in the eye and declared that he wanted a black dog. For those of you who are just dropping in to this blog and haven’t been with me since 2005, Adam has had great difficulty in expressing himself in speech. As he begins to turn seven years old (remember, he was diagnosed at 18 months of age), he talks a little more and a little more all the time. Much of it is still hard to decipher but I don’t let him know that… we just keep on talking. What is emerging more clearly for me anyway in year seven is that he is more demonstrative and has proclaimed “CONVERSATION,” thereby letting me know that he certainly gets the concept. I know and believe me, I understand how a parent longs for such conversation in their autistic children. I remember Adam years ago. I have video tapes of those days.  I’ve longed for it too. Yet, I’ve also learned to adapt and to understand the many facets of communication that continue to teach me what Adam is saying to me. Adam continues to teach me many things.

Perhaps it coincides with learning to type last February, or an accepting school situation — one can never really sum up the many methods, environment, and attitudes that comprise the unique chemistry of our method or the uniqueness of Adam himself.

Tonight, to pick up on the doggie sequel, he showed me he wanted to talk about them by bringing a book out. We typed tonight’s conversation:

Me: Mommy and Adam are moving in the summer to a new house. Should mommy buy Adam a puppy?

Adam: puppy poo poo

Me: do you want a new puppy of your own?

Adam: puppy is a toy oui

Me: oui means yes in French

Adam: puppy is a hat on yes [he played a game on his own this morning where he pretended his bowl was a hat and created his own hat song with the game, so I am assuming he is making an association between fun and the dog]

Me: a puppy is fun

Adam: outside is good

Me: a puppy can play with you outside. Maybe a puppy can fetch a ball.

Adam:  puppy is poo poo

Me: you do not like puppy poo poo?

Adam: right

Me: but if puppy’s didn’t poo, would you like them?

Adam: right. poo poo is poo poo.

Me: yes, puppies are dirty.

Adam: yes outside is good

Me: puppies belong outside

Adam: yes

[Adam has now moved on to a page about teddy bears in a book]

Me: teddy bears are cuddly.

Adam: open kite

Me: are teddy bears free?

Adam: is yours?

Me: teddy bears make me feel good.

Adam: perple xing

Me: why?

Adam: open kite

Me: teddy bears are not real bears. Teddy bears are not living.

Adam: teddy open kite. people press hat

Me: interesting. open kits sound like fun.

Adam: yes. perple xing

Me: it sounds like open kites are so much fun that it gives you much to think about.

Adam: open kite is open. kite is open.

Me: open can mean full of possibilities.

Adam: yes it up perple xing people

Me: people are perplexing and sometimes people can be confusing.

Adam: people are people.

It is this last line I particularly like — the simple acceptance that people are who they are. It of course, made me think of my years at the university pub in the eighties listening to that old Depeche Mode song:

People are people
So why should it be
You and I should get along so awfully
People are people
So why should it be
You and I should get along so awfully

So were different colours
And were different creeds
And different people
Have different needs
Its obvious you hate me
Though Ive done nothing wrong
Ive never even met you
So what could I have done
I cant understand
What makes a man
Hate another man
Help me understand
People are people
So why should it be
You and I should get along so awfully
People are people
So why should it be
You and I should get along so awfully
Help me understand
Help me understand

Now youre punching
And you’re kicking
And youre shouting at me
And Im relying on your common decency
So far it hasnt surfaced
But Im sure it exists
It just takes a while to travel
From your head to your fist (head to your fists)
I cant understand what makes a man
Hate another man
Help me understand
People are people
So why should it be
You and I should get along so awfully
People are people
So why should it be
You and I should get along so awfully

I cant understand
What makes a man
Hate another man
Help me understand……

And so it is. A little boy’s wisdom. Somehow Adam has the ability to help people understand, I think.

If you live in Toronto (or any part of Canada for that matter), it is so amazing to be outside again. Here in the city during the cold winter, we rely on cars, not snowshoes, to get around. Sad, I think, for we would be outside taking advantage of winter a lot more if city snow didn’t turn gray or melt with salt. City winters are wicked.

Nevertheless, spring has sprung. Or at least it’s about to. Adam and I are out walking, taking photos, and he’s now beginning to have his first “conversations.” He uses that word now too. He tries very hard on the telephone and afterwords the word “conversation” springs forth with ferocity from his mouth. He has become outgoing, say his teachers, and he speaks louder too.

The other day, he looked at me intently and asked for a dog. “Black,” he said forcefully. When Adam is sure about something, I can be sure he’s sure. I couldn’t help but feel a wave of guilt, for when recent events transpired, I got rid of the dog in order to resettle. I just didn’t want to leave the dog alone. So Adam is remembering his dog.

“Kiki,” he said again loudly, turning to look me in the eye.

“You can see Kiki,” I said reassuringly. Kiki is now living with friends just around the corner. Just when I thought (even though I should know better) that Adam wasn’t so keen on having his big Goldendoodle pooping and throwing up around the house, I was proven wrong. (I guess Adam doesn’t remember that part).

Now that we will be moving in the summer, a dog might, sooner or later, be imminent. A smaller dog, perhaps. That is, if he keeps asking for one.

Adam has been hanging out with friends. He has three friends now that he hangs out with on weekends. It’s simply delightful for me to watch him take the hands of his patient little friends (shows that kids CAN be patient, loving and kind), and lead them around to what he wants to play because he can’t always say it. We didn’t use RDI or facilitated play groups, by the way, to achieve this skill. It doesn’t mean we didn’t try those things long ago. We did. We just didn’t keep those “methods” up. Adam has learned by being engaged with people while being respected when he needs a break from them. He observes.

I was thinking about Adam and finding what he loves. We tried a few things over the years — movies — those were difficult to sit through. I can name three movies he did sit through from start to finish:

Charlotte’s Web
Happy Feet
Wall-E

Movies are harder than believe it or not, theatre. Adam will sit glued to the theatre. So much so, I’ve been able to take him to major productions. He loves to enact too. It makes me think it’s time for a drama class. He watches videos and he tries so hard to say (he has verbal difficulty) what the characters say. He tries to imitate what they do (he has had motor planning difficulty which is improving significantly). Adam tries so hard and this is his way. So it puzzles me when parents of autistic children take away videos because they believe their children are “stimming” over them. When I watch Adam, the provide some repetitive comfort from an over-stimulating day AND he is desperately trying to learn.

As I think about what autistic adults have told me — using puppets (Adam loves puppets) or “Pretending to be Normal,” it reminds me of how we all have to try personas on to find our own. It takes so much effort and I respect Adam’s. Drama is a really healthy way to explore feelings and one’s SELF. It’s what I believe is a safe haven for Adam to explore himself and probably the most healthy and accepting way of developing one’s Self overall.

As we’ve grown into adults, don’t we all have stories of pretending to be something that we are not? By trying certain things that may not feel natural at first, we come back to being who we are meant to be.