“Between wonder, joy, and fear they stood and found no words to say.”

Are we there yet?

Two years ago today we crossed the border into Canada with a car full of dirty clothes and high hopes. We were starving, so we went straight to the only place we could think of. After two weeks on the road, we ate our first Vancouver meal in the car across the street from the Pita Pit on UBC campus.

Gus began school a few days later, and I went to the Kits pool for the first time. At 137 meters, it intimidated me, as did the people who kept passing me as I crept along – just proud of myself for not drowning. Where is that wall.

Are we there yet?

On Friday, at the Kits pool again (still?) I swim my kilometer. Smooth and steady. I get passed, true. But just as often, I do the passing. Then I go to collect Gus, just finishing his final swim lesson of the summer.

Swim lessons did not go that well. Many reasons for that. First – we were always rushing. Rushing to get there from somewhere else. Rushing to leave there for the next thing: day camp or skating lessons, dinner with visiting brothers and grandparents.

Second – for Gus, a pool is a place to play, not work. And swimming – real swimming – is work. For along time, anyway. From the age of 5 to the age of 14 I was on a swim team. I hated every minute of it. Why did I do it? I had no choice.

But now that I do, I love swimming. Or I like swimming. I love having swum. The feeling of walking away from the pool with wet hair and clean lungs is THE BEST.

Jesse and Katrina, Gus’ teachers, are puzzled. The other kids do as they’re told. Flutter kick – they’ll kick it til it hurts. Bubbles through the nose – they’ll swallow gallons of salt water til they get it right. Why do they do it? Do they have no choice? For some reason, Gus has a choice. And he doesn’t see the point. He can get around in the water without sinking just fine, thank you very much Katrina and Jesse. Much more interesting things going on over there, on the other side of the rope.

Third – Gus missed over half the lessons. He was in California with his Dad. And on the last day, when all the other kids marched out of the water — as they were told. Gus saw me coming and jumped right back in.

This summer we practiced transitions, and Gus is getting good at them. He can change on the fly. Find his socks. Tie his shoes. Get his water bottle. Wash his hands. In about five minutes. I stopped putting his clothes out for him in the morning. He chooses for himself. Interestingly, he stopped putting his clothes on backwards. And even though I grow weary of the brown Scooby Doo T-shirt, I do not say. And I do not bury it at the bottom of the laundry basket.

I am all ears.

I am all ears.

And now, when we take our hike with the dog, Gus does not drag his heels. He keeps up, sometimes running and sometimes walking fast, and sometimes talking about what we will have for lunch. But not once. Not once do I have to stop and sigh, and turn around and cajole, threaten or scream at him to keep up. He’s with me all the way.

But not on the last day of swimming lessons. Every time I ask him to get out of the pool (nicely!) he ducks under. So I pick up the towel, flip flops, and goggles and walk after him. I pass the teacher. The other kids and Mothers crowd around him and he hands out their report cards. He gives Toblerone chocolate bars to the kids.

I feel their eyes on me. I imagine they are silently asking: why doesn’t that boy do what all the other kids are doing?

I go all hot in the face. I want to scream at Gus to get out of the pool.

And I realize they aren’t thinking that, but I am. And it is hard, but I do not scream. In a minute I can even smile – when I realize I just wanted that damn chocolate bar.

Are we there yet?

Two years ago, sitting in the car, munching on our pita sandwiches, I think we all kind of thought we knew the answer to the question. But we didn’t. And we don’t. On Wednesday, Gus begins his third year in the Arrowsmith Program.

And when his head pops out of the water, I ask him if he will please get out. He says he wants to swim the whole way to the other end, and I can’t really argue with that.

It is the longest pool in North America.

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“The old Ent now took the hobbits back and set them on his shoulders again and so they rode proudly at the head of the singing company with beating hearts and heads held high.”

It’s a long way to the Burrowing Owl Winery in Oliver BC. Especially when you’re late for lunch and you get lost on the way to the dog sitter.

It is so hot that her hound pointer mix Travis does not lift his head to greet Satchmo. But hiding up on the porch, behind the faded couch, there’s a cat who does. Satchmo takes after me; he’s not a cat person. But he’s hooked. “That cat won’t back down,” the woman says.

She gives us the bad news. We have another hour and a half to drive. Feeling guilty about dragging the grandparents all this way just for lunch, I halfheartedly suggest the idea of a quick bite someplace close. But like the cat, we don’t back down. We drive the long way around the lake. And just as we are almost there and can barely speak from parched mouths and empty bellies, we must stop for gas.

me too Papa

me too Papa

Jim’s father squeegies the windows to glistening perfection. His youngest grandson has inherited the need to squeegee, if not the gift. He follows in Papa’s footsteps, swabbing the dirty water all over the sparkling windows. He forgets the part where you’re supposed to wipe them clean.

And we must get to lunch, so they stay that way for the remainder of the trip. Especially troubling is his Nana’s window. Her view of the gorgeous lake is ruined, I fear. But she doesn’t mind, and so I relax too.

What are children for anyway, if not to change your view of things?

 

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“I have passed through fire and deep water, since we parted. I have forgotten much that I knew, and learned again much that I had forgotten.”

Gus and I arrive at the parking payment kiosk at just the same time as a friendly young woman. We have a few minutes before Gus’ swimming lesson, so we say: go ahead. She smiles and her companion smiles. (He wears a Yankees cap, so the smile comes as a surprise.)

Then he makes a sound. A trill. Musical but not tuneful. An arpeggio rendered as if by a dove. Then again. And a third. The young woman stops what she is doing, walks up to face him. She firmly takes his hands in her hands and says:

Can you say ‘I’m happy’?

I’m happy, he says.

I’m happy, he says, in exactly the same way.

I’m happy. 

I’m happy.

I'm happy!

I’m happy!

Today my Father turns 92. When Gus and I said good-bye to him last month, at the church home where he now lives, he hugged me hard. Harder than he has ever hugged me. Usually he simply accepts hugs from me. I didn’t want to let go first, but there were people waiting and those people were tired and hot, I knew.

They’re trying to kill me, my father said in a stage whisper.

I was about to state the obvious, as in no one is trying to kill you, everyone here is trying to help you, etc. But then I realize that he is not scared. More important, he is not withdrawn. For as long as I can remember, my father has been withdrawn. In his own world. You could always go and visit him there, and that was usually wonderful. But you had to go alone. He didn’t do groups.

Some of us managed to escape, he said, eyes shining.

He formed a small box with his hands, through a space this small.

My father is in a wheelchair and his days of escaping through anyplace small may be over. But in his mind he travels back there. In his face, I can almost see the skinned knees and splinters. It makes it easy not to talk him out of this delusion, since his mind recreates a world in which he was happy.

I think of the times I am tempted to correct Gus when he tells stories of his bull-dozer operating, stunt-plane flying, Ducati-Monster-riding billionaire best friend Ella the stuffed elephant. I am sad when I realize that I hear them less and less lately.

But we all have to grow up, if we can. Including the young man in the Yankees cap. With the trill. But the price is high.

A boy featured in the New York Times article The Kids who Beat Autism, says “’I miss the excitement. It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable.’” 

As we walk away from the young woman teaching the boy the “acceptable” way to be happy Gus says, a bit glumly.“What’s he so happy about anyway?”

I tell him I don’t know, but I wonder if, like my father, we will all remember one day.

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“But the Enemy is on the move, and he is about to open his full game. And pawns are likely to see as much of it as any. Peregrin, son of Paladin, soldier of Gondor. Sharpen your blade!”

“So what’s his special?”

The affable, nose-pierced young woman who takes our order at the local Panera is curious. We have just ordered our Caesar salad (Gus) and turkey-club Panini (me). She asks how old are you? Gus answers 13. Then he runs off to self serve some fruit punch.

I fumble for cash and blink. Huh?

“His special. I like to ask because my nephew is autistic. Your son doesn’t look 13.”

Calgon, take me away.

I think of Matthew. His “special” is CP. He was Gus’ best and only friend and classmate in the “special” class at the local public school. One day, after meeting with our sons’ teacher, Matthew’s mother and I walked out together. “Kids are mean,” she said, “but grownups are meaner.” When we got to her car, she looked at me and said: “most of the time I forget that he is different.”

A long hungry line forms behind me. I stand like a statue holding a $20 bill. To describe the many ways in which Gus is special seems off-topic, at best. Defensive at worst.

Grownups are meaner. We use shorthand when no shorthand will do. And little kids in schools all over the world become the opposite of special when they are labeled and dismissed. Mothers too.

It's your move.

It’s your move.

“If you have a child with a disability, you are forever the parent of a disabled child; it is one of the primary facts about you, fundamental to the way other people perceive and decipher you.” writes Andrew Solomon in Far From the Tree. “Such parents tend to view aberrance as illness until habituation and love enable them to cope with their odd new reality – often by introducing the language of identity.”

When Gus was (finally!) diagnosed with dyslexia, we left New Jersey for Kentucky so that he could go to a school that specializes in dyslexia. There, as Andrew Soloman writes, we discovered that “differences unite us.”

Like Matthew’s mother, I could forget that Gus was different, or special, or whatever word they’re using at lunch counters across the mid-West. Not only was Gus happy to have friends with struggles like his, I was happy to meet mothers with struggles like mine.

Nevertheless, I do not want to perform like a trick pony for the woman at Panera. I mumble something about dyslexia and run away. For the rest of the lunch, I silently resent Gus’ exuberance. I want him to show the woman — and everyone else for that matter — that there is nothing special going on at our table. Which is sad, because there usually is.

Soloman writes about neurodiversity – the movement that rejects the idea that learning disabilities should be fixed or cured, but instead embraced as the natural progression of the human genome. But I think this identity as illness thing is complicated. Our children with learning differences are much more than their diagnoses.

Some dismiss the Arrowsmith Program because its cognitive exercises increase the brain’s capacity to learn. Instead, they prefer to wear their disability like a badge of honor – their struggles have defined them for so long it would be like a betrayal to “fix” or “cure” them.

But the kids in the Program are not broken or sick. They are in pain. And nothing about that feels very special.

 

 

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“Let it be a light to you in dark places, when all other lights go out.”

Take a chill pill! Jim yells up to us from downstairs.

The marathon of the school year turned into a race some time around March and by June it was a sprint. By the time we left the Year-End Ceremony on Friday, we were running for our lives. At home, exhausted, we start a bicker, move on to a squabble and fall into a fight. About socks.

How can I take a chill pill? My buddy from the Red Class is going back to Australia! And with that Gus’ eyes fill with tears. Then they start to spill over into his hummus and vinegar.

It’s not often that Gus gets worked up about something other than what’s for lunch, but that is changing. One of the things that starts to happen as kids advance in the Arrowsmith Program is that they start “to connect the dots.” These connections form the building blocks of learning math and reading, which is why people leave their homes and cross the world to bring their learning disabled children here to Vancouver. But what we begin to see are more important connections that kids with dyslexia and ADHD often miss – the things that connect us.

Last year, Gus might have declared that Max was his friend. He might also have understood that Max lived somewhere else. But he did not understand how this affected him. Gus lives in a relationship limbo: he can be friendly with strangers, and strange with friends.

Now, he can remember something about the past – the time they talked about Gus’ first dog, Dizzy – something about the present – Max graduated and would be going home, and something about the future – Gus might not see him again. Ever.

Gus is the happiest person I know. Has been, since the day he was born. There is only joy and curiosity with him if he’s not hungry, tired or doing tracing. I see now that one of the reasons is that he doesn’t know what he is missing. And sometimes I wonder if it isn’t better that way.

you can open your eyes now

you can open your eyes now

But at the party, I saw things: Gus gets up from his plate of snacks to “go be with his friends.” (If you know Gus, you know this is huge.) A pack of three Green Class graduates – one wearing a banana hat – experience inseparable one last time. A teenage girl begins to cry in the middle of the dance floor. Her friends encircle her, as if to hide her from the hurt. Teachers taste the bittersweet truth that their kids (some of them, anyway) are moving on.

Through it all Peter from Orange Class keeps on dancing.

You tell me, is it better to know?

 

 

 

 

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“And after all, he never had any real hope in the affair from the beginning; but being a cheerful hobbit he had not needed hope, as long as despair could be postponed.”

Nothing motivates like a trip to Disneyland. When you wish upon a star and all that, right?

Or so I thought before this morning in the car, on the way to school. I had mentioned, casually, (oh yes, I was not born yesterday) that if he could continue to work hard until the very last minute of school next week, Gus could go to Disneyland. With the brothers. And I noticed that his reaction was equally casual. Dubious even. My son has the nose of a bloodhound and he smelled a rat. What’s this going to cost me, I heard him think.

And we fell right in. Master clocks, we suggested. Or sup motor. Or tracing. After all, Gus has been making his goals since his year end testing. He has even moved a level or two. Why not choose the hardest thing, his bête noir, to accomplish as time runs out?

Parents are greedy little beggars, aren’t we?

This morning, in the car, Mr. Casual said: maybe we can do this Disneyland thing another time? When I have more time to accomplish my goal?

I tried to recover. Oh sure, I said, do what you can do. No pressure.

He was so calm, my son. So completely in charge. And even though Jim and I walked in the forest afterwards, at a loss as to how to motivate this boy, I couldn’t help being proud.

He’s not for sale.

When I was a kid I wanted bigger, better, newer. I wanted a pet. They got me a cat. I didn’t give up until I got a horse. The most beautiful horse in the world.  When I grew up, I wanted to live in a city. Only one city would do.

do Canadian pennies still buy wishes?

do Canadian pennies still buy wishes?

I wish, I want, I wonder, these are okay things for kids to say. But they also take you out of yourself, out of the here and now and into some pretty dicey rapids. There will always be someone who has more. There will always be something you can’t reach.

But are you the person who gets back to work — on something that matters to you — the day after you buy that Porsche?

A couple of hours later, Gus called me to say he’d mastered something. True, it wasn’t clocks or sup motor. But it was something that he is good at. Which just might be the biggest motivator of all.

For me, that’s proof that he can do this on his own. Without any help from Mickey.

 

 

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“He saw no color but those he knew, gold and white and blue and green, but they were fresh and poignant, as if he had at that moment first perceived them and made for them names new and wonderful.”

In her Ted Talk, Mellody Hobson describes what it’s like to be seven and the only black child at an all-white birthday party. Many of us have grown polite when it comes to race – “color blind,” and she challenges us instead to be “color brave.”  The problems we face require all sorts of people to solve them. If we look around the table and see people who look just like us, chances are we need to shake it up. As Mellody says, we need to “get comfortable with being uncomfortable.”

Years ago, Gus had to spend some time in a hospital and then he was invited back to get an award. There was a boy there in a wheelchair who moved his head from side to side. Gus stared at him and his father said: he does that when he’s nervous; take his hand and he will stop. So Gus did, and the boy did and together they got an award. If he had ignored the boy like the rest of us, that wouldn’t have happened.

(don't) watch your step

(don’t) watch your step

The other day we were out walking the dog in Pacific Spirit Park. Coming towards us, a group of children with balloons. Gus ran towards them, tripped on a rock, and fell. But he did not hurt himself. (A year ago, he had tripped on the same rock and hit his head on another. Oh my! The blood!)

Just as I was congratulating him on catching himself, we met up with the party. I observed two little boys looking at us and snickering. Were they laughing at Gus?

My skin began to crawl because when I was their age, that would have been me. I was so terrified of being excluded that I became The Excluder with superpowered eyesight.

When Gus started having trouble in school, the tables turned.I began to feel those eyes on me, on us – and we were the ones excluded. Oh, at first it was gradual. You could almost ignore it. But pretty soon I felt invisible, and began to understand what Mellody refers to as color blindness.

I haven’t felt that way in a while. And though I can’t be sure those little boys were laughing at us, I begin to worry. Not about their laughter, but about what happens when they learn not to laugh but instead to look right through us — these boys who might one day be Gus’ classmates.

Here in our little corner of the world, we are safe. We look, talk, walk, (run!), think, learn and play different. When our kids sit around a table they do not see kids who look just like them, or just like the boys who laughed in the Park. And I think Mellody is right, it’s because of these differences that our kids can solve a very big problem – how to learn.

But one day – and for some of us that day is almost here – we have to leave this corner of the world. Our children will have a better capacity to think at the same speed as everybody else. But what they think? That will be wildly different.

What happens then? Will they use their advanced processing speed to be like everyone else, because they can? Will they hide, because they can?

I hope not. Their wild thoughts and crazy dreams are pure gold. They have earned them the hard way. Like Gus. He knows a lot about tripping and falling. Maybe he will design a shoe that recalibrates the foot to unexpected terrain changes. And the little boys who laughed will wear them in the Summer Olympics.

It’s only possible if we shake it up, right Mellody?

 

 

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