Denis Deasy - Living In Harrys World

This book is dedicated to my wife, Joanmarie, and my sons, Denis and James. Its pointless to express in words how much I love you.

This book would not have been possible without the help of Sally Cline, Cliff McNish, Sean Poole and Lisa Jewell. Thank you for taking the time to read my book (several times) and for your guidance and constant encouragement. It is greatly appreciated.

Daddy, I want to hug the Fat Controller.

Leave him be, he has enough children pestering him right now.

My son Harry and I are on a steam engine train disguised as Thomas the Tank Engine . A grumpy looking middle-aged man is dressed as the Fat Controller, the only human character from the famous Thomas books.

Did you know that in America, the Fat Controller is called Sir Topham Hat? I ask.

Why?

American people think its rude to call people fat.

Why?

It doesnt matter

Harry looks confused as another conversation between father and son peters out.

This train is more crowded than my usual five-thirty-one from Victoria. Our carriage is full of harassed mothers attempting to calm down their children after a visit from the Fat Controller, whose popularity with the kids is a mystery to me. He says nothing and seems to have landed the job solely on the basis that hes vastly overweight.

Diarrhoea, shouts Harry.

The noise in the carriage dramatically drops, as everyone stares at him.

Harry, please keep your voice down, I say, trying to remain calm.

But I like diarrhoea.

I hear sniggers from some of the children and murmurs of disapproval from a few of the mothers.

Daddy, you had diarrhoea on Thursday the twenty-second of November two thousand and twelve. Did you enjoy it?

Can we talk about this later?

Harry looks disappointed, but doesnt pursue the subject.

Harrys twelfth birthday is tomorrow. He was diagnosed with autism two days before his fourth birthday.

He also suffers from Attention Deficient Hyperactivity Disorder, for which he has to take daily Ritalin tablets.

Daddy, why is Mummy thin and youre fat? my son enquires as we depart the train.

Im not fat, I respond, knowing that Harrys comments are more accurate than mine. Hes completely unaware how hurtful his remarks can sometimes be. I know that I have a weight problem, but I simply havent got the energy or the inclination to do anything about it.

I heard Mummys friend Jane say that youve got fat.

When did you hear this?

Last Tuesday in Mummys house at twelve minutes past seven in the evening.

The media always seem to portray autistic children as having a special talent. From my experience this assumption is a myth, nevertheless, my son has a photographic memory for dates.

Do you think that I look like the Fat Controller?

Yes.

Just as Im thinking that its time to renew my gym membership, Harry speaks again.

I wish Mummy had a beard.

Harry, only men have beards.

But Mrs Willis has a moustache.

Mrs Willis is one of Harrys teachers.

No she doesnt, she has a little hair on her face, thats all.

I told her that I liked her moustache.

Was she annoyed? I ask nervously.

No. She walked out of the room.

In your next lesson why dont you tell her that she looks pretty?

But shes ugly.

Just pretend that shes pretty.

Shes not pretty.

OK, just be good in her lesson and dont talk about her appearance.

We get into our car and drive out of the train station car park.

Where do you want to eat tonight?

McDonalds.

No, we went there last weekend; shall we go to Marios?

Harry doesnt respond.

Some parents of autistic children always avoid the normal family outings, like eating in restaurants or going on holiday, because it will inevitably produce stressful and embarrassing moments. I believe that Harry should experience everything that a normal child of his age does and for the past few years Harry and I have always gone abroad for our holiday. Our flight to Italy last summer was particularly stressful, as Harry constantly kicked the seat in front of him. Inevitably the passenger complained and who could blame him? Fortunately we were upgraded to business class.

Our Italian trip wasnt a success as Harry kept complaining that the Italians were too noisy and wouldnt speak English. Although Harry couldnt watch his favourite television programmes, he did sit through endless incomprehensible Italian cartoons. Harrys birthday is tomorrow and one of his presents is a portable DVD player so at least hell be able to watch his beloved Thomas The Tank Engine anywhere in the world. This may sound morbid but Im determined to ensure that Harry will go on interesting holidays now, because when I get older I may be unable to take him.

As I have a lot of holiday time owing to me, Ive taken ten days off work. Im looking forward to spending some time with my son.

Marios is crowded but we manage to get a table. I order lasagne for me and pizza with French fries for Harry.

Are you excited about the concert?

Harry nonchalantly shrugs his shoulders.

Theres a concert for musical protgs at the Royal Festival Hall on Saturday week. Playing at the concert will be a twenty-five-piece orchestra, backed by a thirty-strong choir. Harry and his five class mates will be singing their own song. They will be the only special needs performers.

I felt extremely proud when the headmistress informed me of Harrys inclusion. I cannot believe that Harry will be singing on the same stage that my favourite singer, Frank Sinatra, had once graced. However, as the concert date draws nearer Im becoming increasingly nervous.

The concert starts at seven oclock but Harrys song wont be performed until nearly eight oclock, although they have to remain on stage throughout. The possibility that Harry will sit still and listen to classical music for an hour seems extremely unlikely. Though friends have tried to reassure me that Harry will be fine, their worried expressions indicate the opposite.

What did you do at school yesterday?

I ran up the stairs.

Thats good. What did Mr Perry teach you?

Harry does not reply.

Did you do English or Maths?

A familiar perplexed expression appears on Harrys face. My son often has difficulty engaging in the simplest of conversations. Im envious of the way some normal parents interact with their children. It saddens me that I dont have that same rapport with Harry.

Harry and I are both tall and have dark hair, which in my case is a slight exaggeration, as my hair has all but disappeared. My son is a handsome boy, who normally would have had his pick of girlfriends when he grows older.

The meal arrives and despite Harrys preference for McDonalds, he finishes it before Im halfway through mine.

Can I have some more fries please? Harry asks.

I get the attention of the waitress, but before I have the chance to speak, Harry dashes over to a nearby table, snatches a handful of fries from another boys plate and devours them.

What are you doing? the childs father shouts at Harry, who is still staring at the remaining fries.

Im sorry about that, he doesnt understand

Didnt you ever teach your son any manners?

My son is

Your son is a rude boy, who you obviously cant control.

If you would stop talking for one second, please.

I now have his attention, as well as all the other diners.

My son is autistic. He doesnt even know how to dress himself in the morning, let alone grasp why he cant help himself to someone elses meal.