“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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“It’s beyond any Gamgee to guess what he’ll do next.”

The first time I met Gus’ brother Jack was in the lobby of the Astor Place Theatre, off-Broadway, before a performance of Blue Man Group “Tubes”.  Two tickets to the show were set apart. I had hoped that Jim and I would sit together, and the kids would sit with their grandparents ( This was 15 years ago, when I knew even less about kids than I do now.) But I couldn’t hide from Jack.

I'm free!

I’m free!

He walked right up to me and looked: “I want to sit with her,” he said.

I was terrified.

As I sit watching him graduate (with Honors!) from Emerson College, I am only a bit less terrified. He is nearly grown up, but he can still walk right up to you and look. There is a lot in that look, and those who do not look away are rewarded.

Jay Leno was the commencement speaker. He has dyslexia and school was torture for him. But at Emerson, he found a group of people who did not look away. He gave the graduates 20 tips on making in show business. Here is the gist:

1. Try not to get a regular job – if you graduated from here, you’re not regular.

2. It will take at least 4 years to get anywhere in this business. Think of it as your grad school.

3. Take every degrading job in the business that you can. That way you’ll have lots of good panel later on when you’re a guest on a talk show.

4. Always keep people in your life who don’t know what you do.

5. Nothing wrong with failing.

6. If you admire someone in the biz and want to work with them – write that person a letter and try to hand it to them in person (if somebody drove halfway across the country to see me, it would be a lot more meaningful than sending me an email from Cleveland)

7. Keep the friends you make here at Emerson, you may be in a position to help them and they may be in a position to help you. This is not a cutthroat business. It’s a wonderful business.

8. Do not judge your own success by the success of others.

9. Never turn down a job because of $.

10. It’s nice to believe in yourself; it’s better to have others believe in you.

11. If you can, stay in the business seven years. Keep your eye on the ball.

12. (Sorry, I missed 12 — too busy counting up how many years I have devoted to my writing career…)

13. If you can’t get in the front door, get in the back door.

14. Only live in the time you live in.

15. Don’t have a relationship with someone who doesn’t get it.

16. Never go onstage mad. Anger robs creativity.

17. Never create anything bigger than your act. (as soon as they start talking about how much money you make, you’re sunk)

18. When you get comfortable, move on. Find the toughest audience you can.

19. Accept criticism. Make it better.

20. Anybody can have a life. A career takes work.

Congratulations, Jack!

 

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“’Then would you have us retreat to Minas Tirith…and there sit like children on sand castles when the tide is flowing?’”

I don’t have anything against couches. I love sitting on those belonging to others. I love looking at pictures of them in magazines. Dreamy creamy white Italian leather couches. Lots of them. But I wasn’t in any hurry to purchase one. One that will soon be blemished by greasy fingerprints, red wine and sat-upon chocolate truffles.

I loved our empty room with its big grand piano in the corner and its view of English Bay. I loved its Gatsby-esque possibility. And why not? We had to jettison a lot of baggage, both real and virtual, to get to that big empty room, and I wasn’t keen to accumulate.

think outside the box

I used to be a couch

But as Jim said, it’s plain ungracious to invite people over and not give them a place to sit. He was right, but shopping for a couch was a lot less fun than I thought it should be. Until I remembered those little weights they sell you when you buy a helium balloon.

They are wrapped in shiny foil like Hersheys kisses but there is zero chocolate inside. That’s disappointing. So is the fact that you have to pay an extra two dollars for the tragically non-chocolate weight after spending close to twenty for your lifesize SpiderMan mylar balloon – just to keep him from floating away.

Most of us here in our little corner of Vancouver never purchase Canadian couches. Instead we rent houses that come with them and we strive to keep them stain free as if no one has ever sat on them. As if, perhaps, no one was ever there at all.

And that’s the life of an exile. It seems perfectly normal, your life, you can locate the same shampoos and snacks and fill your shelves with familiarity.  But then you see out of the corner of your eye something distinctly Canadian: a traffic light blinks green, a pedestrian saunters. And for a moment you reject this, thinking that’s not right! That’s not how things are…at home…And then you stop and remember and reset.

What we do have is our friends as ballast. The deep connections we make hold us here, steady. The mornings at drop off. The afternoons at pick up. The cups of tea. The moments of clarity. These are the lines that keep us from floating away like mylar Spider Man, up into the North Shore Mountains, where the air is too thin to breathe.

In just a few short weeks some of us will cut the line. And some of us will stay, and wave with one hand. With the other we will clutch the armrests of our brand new couches.

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“For a while they stood there, like men on the edge of a sleep where nightmare lurks, holding it off, though they know that they can only come to morning through the shadows.”

Sunday morning. On my way down to the laundry room with arms full of sheets and towels, I pass Gus at the kitchen table. He has a new Lego set. It’s a motorcycle. He unwraps every tiny piece of plastic with glee. I try not to panic. Instead, I consider that the new Gus may just put it together 1-2-3. By himself! I even say the words: Look at the picture, it tells you how!

I carry my laundry and my optimism down to the laundry room. Before long though, I hear a moaning upstairs: Oh no. Oh no, Oh no, no, nooooooo. I stuff the clothes in the washing machine and slowly walk up. Gus sits at the kitchen table, every single tiny piece of the new motorcycle lego set spread out in front of him.

Except of course the single most important one: the front wheel of the motorcycle has gone missing.

The very spectacle of it makes me itch all over. I long to pick up every piece and throw them in the garbage. I long to put on my ice skates and stomp all over them.I long to place a household ban on tiny little plastic pieces of anything. I feel my face go all Joan Crawford. No more wire hangers!

Lego set + the ADD child + busy Mom = a tumbler of vodka and ten hours binge watching some HBO dramatic series. Granted, I am no good at Math, or Lego for that matter, but I begin to fear that my beautiful Sunday is in danger of being highjacked. So what to do? Make it worse, of course.

Honey, you just got this last night! Why does this always happen? Where did you have it last? And the kicker, maybe: Put it together without the wheel!

(I am the youngest of five children. We never had every piece to anything. One of the most beloved possessions that came into our playroom was a jeep. One could peddle his way around the neighborhood in that thing at high speeds. One could, but not me. By the time I was even allowed to sit in it, the wheels were gone.)

Gus gets up from the table. No, I don’t want to do this.

You’re just going to give up? I say. I look at all those now useless pieces of plastic in panic. I am just about to add something about how spoiled he is, when a bell goes off in my head. I have been attending numerous conferences and support groups and book clubs about early childhood development lately. I feel like the rat who has gone from the boring old cage – where we tell kids they are spoiled – to the enriched rat cage where we actually have other wheels to try. Oh. I remember, OK, that won’t work.

Almost

Almost

Gabor Mate, in his book Scattered Minds, writes: “When we endure our children’s anger or frustration with compassion they will often move on to the sadness of not having what they wished for.”

Gus, I say. You must be so frustrated that you don’t have the wheel. The wheel is the best part!

He sits down. Tears spring to his eyes. He touches all the other pieces lovingly.

I go to the drawer and pull out a ziplock – one of Gus’ favorite things in the world. And it’s a big, new one. (I try to reuse them, and use the smallest one I can, but clearly, this is an emergency.)

So I say, Please put all the pieces in here. Take the bag up to your room. Oh, and please, get your shoes on.

I don’t know where they are, says Gus. I lost them.

I did not take that bait. (I am a rat, but my brain is plastic!)

Five minutes later, Gus is back downstairs, happy as can be.

Shoes on.

 

 

 

 

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