Sometimes it takes an anniversary of doing something you've done for years to remember just how far The Boy has come. This week that reminder came in the form of the Christmas Tree.
The tree used to be such an upheaval for him. And you can't blame him really... Things were going quite nicely in his world, he knew where he was with everything and then once a year Dad would insist on moving the furniture round and sticking a 7ft plastic tree with flashing lights in the middle of the lounge where the TV should be. Little wonder it was pulled down every other day.
But now we've become accustomed to it. The tree has become part of our routine like everything else. The same tree, with the same decorations, in the same place... Granted, if Dad had known the tree was meant to last ten years he might have bought one other than the Argos Value one he got at the time, but it's our tree all the same.
The Boy doesn't help with decorating the tree. Boring. I learned my lesson last year when I insisted he help and he just lined up all the same size baubles of the same colour on the same branch. Instead, he just turns up now for the big Switch On. Much like Regent Street had the Spice Girls this year to turn on their lights, in 2013 we once again had The Boy in his pants to do ours.
We even have a fairy nowadays too, sitting atop surveying the chaos below. For two years she was abandoned in the cupboard and replaced with a sellotaped-on Power Ranger. I reminded him of it the other day, and I could see on his face that look of "Let's do that again!!!". But, he let it go...
The tree is in the lounge, which has recently been christened "My Room". The Boy's bedroom next door is now apparently "His Room". Given he spends so much time in there, I asked if he'd like to get some Christmas decorations for "His Room" too. To my surprise, he said yes. So off we went to the Pound Shop.
The Pound Shop is perfect for us, not least because it's a pound shop. The Boy still hasn't fully grasped the concept of money, and although he is getting better at it he still thinks purely in terms of "how many things can I have?". And the Pound Shop is the only place where I can be sure I'm giving the right answer without bankrupting myself. Ten things. Ten things to decorate your room for Christmas.
You can imagine how tasteful the bedroom now looks. Resplendent in all its glory. It has been decorated with all the subtlety of a Royal British Legion Social Club function room. And in the middle of it all on his chest of drawers sits the elixir of life. The very reason to get up in the morning. His chocolate advent calendar. Breakfast.
Oh, and for designers of chocolate advent calendars, I've got a message for you. The Boy tells me he could do your job better than all of you. You can't even put the numbers 1 to 24 in the right order...
Last night all the worries and traumas of the last couple of weeks melted away. Last night... Doctor Who returned.
Given it was the 50th anniversary, it was being shown simultaneously at the cinema, and I'd taken a gamble a few weeks ago and booked seats. 3-D. Near the back. The Boy hates 3-D. And sitting near the back. But this was the Doctor. Normal rules don't apply...
Trips out so rarely cause The Boy excitement. He will enjoy himself while he's there, but often the change in routine and anxiety means it can be a battle to get him out of the house in the first place. The neighbours must think I'm dragging him off to the orphanage by the noises and protests he makes, rather than the family trip swimming or to the park.
But yesterday from the minute he woke up he asked, "how much longer?". At 5pm he had his shoes on. By 5.30pm he'd even brushed his teeth. We left the house with him leading the way, rather than dragging his feet at the back. This was a trip like no other.
In the car on the way there, I was allowed the stereo on. And even the heater. The adrenaline and excitement surging through his body meant that he was suddenly able to cope with things that he couldn't normally. He even told me that he doesn't like going in a car at night because it's dark where your feet are but tonight it doesn't matter as he's going to see Doctor Who...
We arrived at the cinema fashionably early. We'd had to park quite far away, I suggested we use the wheelchair. He gave me a look as if to say, 'How do you expect me to save Gallifrey in a bloody wheelchair?'. So we walked instead. Well, I walked. He practically skipped.
We collected our tickets. I asked him if he wanted popcorn. Once again, I got the look... There would be no food or drink. How can you eat and drink and concentrate at the same time? Fine by me. Cheap date...
Then I saw the queue. My heart sank. It had all gone so well up to this point. I warned The Boy it could be a long wait. "Doesn't matter", he said. For twenty minutes he queued. At one point we were stood next to a poster advertising the film itself. He turned to me, his face about to explode. "I can't stand near that", he said, "I just want to touch it. It's too exciting!!!".
Finally they let us through. I went to walk towards the lifts as we always do but The Boy dragged me back. "Let's go with everyone else", he said.
"Are you sure?". He nodded, beaming away. So last night, in amongst a sea of bow-ties, fezzes and Doctor Who scarves, a boy and his dad rode the escalator.
We took our seats, The Boy on the aisle with no-one next to him. His 3-D glasses that he hates wearing were on ten minutes early. The theme music started and he began singing away. "Woooh-ooooh", he wailed. "Shush!!!!", I said, laughing. "I just can't help it!!", he replied.
I'm not sure what happened for the rest of the film. The Boy was lost in it all. And sitting next to him, behind the dark glasses, Dad was doing some time-travelling of his own. Stifling silent tears. The last ninety minutes, that would have seemed so insignificant to so many, had been the closest we'd ever come to discovering just what life might have been if only...
The film ended. Exhausted, The Boy slumped back in his chair, silent.
"Come on kiddo", I said, helping him on with his coat, "time to go home... Let's go and get the lift."
Thank you all so much for your goodwill messages for The Boy. He's getting back to his old self, although a bout of illness has slowed things down a bit. He'll get there very soon I'm sure. You'll know when it happens, because it will be precisely the point that I start moaning again. At least our saviour Doctor Who returns on Saturday, I have high hopes...
Because he's been home he had to come with me to the supermarket this week. He'd have been happy for us both to starve for the week but things reached crisis point when there was no cucumber left for Sky and Fluffy (have I misspelt it all this time and is her correct name Skye? I've no idea...).
It turns out keeping guinea pigs is a whole lot of fun. Especially when you don't have to do anything. The Boy's involvement so far has been being handed a guinea pig to sit on his lap and watch The Rugrats on television with. The cleaning, feeding, watering... that's down to me. Apart from giving them the aforementioned cucumber, because that's what they're eating on the front cover of the unopened 'Caring for Your Guinea Pig' book I got him. Oh, and constantly talking to them when Dad has left the room. He's very much in charge of pastoral care. I'm just the cleaner.
So, the Great Cucumber Famine found us both in Sainsburys on a Monday morning. Because he wasn't feeling well, I said we could use the wheelchair, something we try and reserve for longer distances. It was a revelation. The supermarket has always been a place of huge anxiety for him, and given recent events I wanted him to try and relax as much as possible. And on Monday morning I made a brilliant discovery. If you take a child in a wheelchair into a supermarket, you can get away with anything...
We started off with a duel with the cucumbers in the fruit and veg section. The Boy was on good form, and he would have beaten me had it not been for the cauliflower shield I grabbed at the last minute. Warrior Dad lived to fight another day... Next we made a train with me-pushing-The-Boy-pushing-the-trolley, and alright I should have slowed down on the corner by the sausage rolls, but in my defence I didn't think he'd just let go of the trolley... I kept asking him to pass me things I knew he couldn't reach as I'd fastened his seatbelt and normally that would have caused him so much frustration but on Monday the planets had mysteriously aligned and he just found it hilarious. No more anxiety.
Then eventually we got to the freezer section, The Boy's least favourite part of the supermarket. The humming noise of the freezers, the change in temperature, he hates this section. The perfect place to re-enact a scene from Chariots of Fire. We lined up by the pizzas, Dad with his trolley, The Boy with his wheelchair. The first to find the fish fingers would be the winner. Engines revving. Three-two-one..... GO. The Boy wheeled himself faster than any Paralympic athlete, I'm bloody sure he took the first corner on two wheels. Turning round, checking I wasn't gaining on him, screaming with delight. Alright, Dad played a bit dirty by the potato croquettes, and when the trolley clashed with the wheelchair if you looked closely there were definitely sparks coming off the wheels just like in the movie, but The Boy still pipped it. Victorious, he held his box of fish fingers above his head. Then when all the adrenaline wore off, it was as if he suddenly remembered he was autistic again. "Freezing, freezing, freezing", he repeated rapidly as he threw his prize catch back into the cabinet. Race over.
The very best bit about taking a child in a wheelchair to Sainsburys though? When you go to pay, just take your trolley into the 'Basket Only' queue. I promise you, no-one will say a word...
Not much of an update this week I'm afraid... The Boy had some sad news on Monday that has upset him greatly, and as a result I'd rather not share it here, other than let you know why there have been no posts. I am sure he will bounce back soon, and I hope you understand fully.
In brighter news, I was checking the internet history on the computer the other day, and someone has been googling the phrase "father crismas fon number". I can only think that it must have been Sky or Fluffy...
Back soon x
I succumbed to the pressure. Having been away, and seen once more how well The Boy interacts with animals, I decided the time had come to get our own again. I'd still love a dog, and I know that would be his favourite thing in the world, but the timing isn't right at the moment. So I thought we'd settle on the next best thing. We'd get a pair of guinea pigs.
So, on Monday's INSET Day we went off to the pet shop to pick them. Two trips - one to buy the world's biggest cage, and then another to collect the guinea pigs themselves. I told The Boy he could choose them. He was beside himself with excitement.
It was one of those days where everything went right for him. As we walked into the pet shop the parrot that has always ignored his pleas to speak squawked back a great big "HELLO!" when The Boy greeted him. The Boy grinned from ear to ear and strolled on by to the rodent section with a swagger Doctor Dolittle would have been proud of. Today was a good day.
There were six guinea pigs to choose from. The Boy knelt down to speak to them, gentle whispers as he held out his hand. The encounter coming far more easily to him than any playground interaction. Four of the guinea pigs were very friendly and came up to his hand. The other two were terrified, and ran for the cover of their house, shivering in fear. And maybe I'm reading too much into it, but it was as if The Boy saw something of himself in those two. Because they were the two he picked. A pair of girls.
In the car on the way home he sat with the cardboard box on his lap, gently reassuring his new friends after every speed bump. I said he'd have to think of names for them. "I already know their names in my head", he said.
"What are they called?", I asked, half dreading the response.
"Sky and Fluffy."
"They're brilliant names! Where did you get them from?"
"I was watching a Minecraft video on YouTube and he kept saying those words over and over and they just got stuck in my head".
Welcome to your new home Sky and Fluffy. We hope you'll be very happy here. And you should both be very grateful that we bought you on Monday. Because if The Boy had been watching the video on YouTube I caught him watching this morning, you'd both have been called something far more inappropriate...
Sky and Fluffy. I have been asked to point out that Fluffy is in the foreground.
Oh yes, dear Reader, it's been a while but today we've been back into the kitchen to prepare for a Halloween Party with TheBoyWhoLikesWarwickDavis later on.
Step 1: Prepare the pumpkin
Take your pumpkin. If you are not sure if it's the perfect one or not, don't worry, choose one of the other three that arrived because Dad can't work how to do internet shopping.
Other successes in the vegetable ordering category included three potatoes and a single courgette. Ask The Boy to draw a face on one of the pumpkins.
Cut it out while he goes back to the computer as he's "tired." Realise your knives are about as sharp as a teaspoon. Decide to use a teaspoon. Ask yourself why you're even doing this. After twenty minutes The Boy will come back and tell you he can build a mansion on Minecraft quicker than you can carve a pumpkin. Tell him he isn't helping. After fifty minutes...
The Boy comes in and declares it's the best pumpkin he's ever made. Dad decides to up the ante and declares he can make a Homer Simpson face out of one of the other pumpkins. The Boy is thrilled. Dad gets to work.
Spot on. Now on to step 2...
Step 2: Make a spooky graveyard cake
You will need:
- 170g of chocolate
- 45g unsalted butter or margarine
- A bowl of fruit to sit in the background of the photo to pretend you're a better parent than you actually are
- 300g marshmallows
- 150g Rice Krispies
- No egg
- Jelly worms
- 3 shortbread biscuits
- Cholesterol-lowering medication
Realise the battery has gone in the scales. Just guess everything. Put some butter in a pan and ask The Boy to break some chocolate into little pieces. Tell him to stop eating the marshmallows. Ask him to stir the mixture while complaining that he's burning.
Tell The Boy to come back into the kitchen. Add what's left of the marshmallows to the pan.
Listen to The Boy explain how he gets 'tireder more quicker' than anyone else. In between the moans of agony listen to the phrase "Looks like cow-pat, looks like cow-pat" being repeated over and over as he stirs reluctantly.
Just throw in the Rice Krispies and let's get out of this kitchen as quickly as possible.
Place the delightful mixture into a lightly greased tray. Decorate.
There. A scary pumpkin, spooky graveyard cake and Homer Simpson.
Happy Halloween from both of us x
Sometimes it's easy to forget just how far The Boy has come over the years. It's half term, and Friday's four hour journey to visit family up North took closer to eight. And sitting in traffic on the M6 reminded me just how painful the trip used to be. The Boy trying to open the car door at 70 miles per hour, or Dad being struck in the back of the head with a book because we aren't there yet, they're all things that by and large seem to be in the past now. Instead we played games to pass the time.
"Let's play I-Spy", I said.
"Okay. I'll go first"
"I Spy something beginning with N"
"I've only just started guessing..."
"Right. Now do you give up?"
"No! N... N... Nissan?"
"Don't worry. Erm... Nettles?"
"No. Give up?"
"No. The answer is Nothing... My go again as I won..."
I was worried about once we arrived too, the greeting he might have in store. As a toddler whenever we arrived he would ignore his grandparents outstretched arms and run straight past them to say hello to the dogs and the goldfish. An hour later I'd hear him screaming, seemingly in agony, and I'd rush to his aid to discover The Grandmother had given in and tried to sneak a hug from her grandson who she hadn't seen for months... Confused and hurt, she'd step away and retreat once again.
So while we're stuck in traffic on Friday I called my mum to let her know we'd be arriving late. I said I'd let her know when we get closer. She was on speakerphone, and at the end of the call as I said goodbye, The Boy suddenly grabbed the phone. Lifting it to his mouth, he blurted out, "Love you, Nana!"
"Love you too sweetheart", she replied, the pride in her voice echoing around the car long after the call had ended.
Monday morning, and another week at school rolls into town... For once though, the idea of the week ahead doesn't fill me with dread. Yes, there's hope in the air...
After such a rocky start to the new term, The Boy had his best week at school "ever" last week. There were three days where he did more independent work than he's ever managed since he's been there. Part of me wanted to write and tell you about it sooner, but another part thought I might jinx it all if I did.
The Boy's whole demeanour changed over the week. He was happy. Bursting with pride as I picked him up each afternoon. And which came first - was he happy because he was 'doing the right thing' or was he 'doing the right thing' because he was happy? I don't think I'll ever know. I just wish I could bottle the way he felt last week, and then whenever things don't go so well we can take out our secret potion and dab ourselves down with it and make all well with the world again...
Managing to work independently has always been the hardest thing for him. Doing anything independently. So many believe that those with autism crave solitary lives, but for The Boy nothing could be further from the truth. He craves interaction. He needs someone alongside to reassure him constantly. His greatest fear is being alone. Without another person to remind him that he exists it's as if he might well disappear forever.
So, when I collected him on Friday, in amongst the 'Gold Award' certificates for his record-breaking week, there was another certificate. 'Star of the Week'. And it was awarded for "being very polite to visitors". And this certificate really made me smile, because I know the visitor in question. I saw him myself at home time on Wednesday. In many ways it's The Boy's nemesis, the person so many schools have tried to prevent him from ever meeting. It was the OFSTED inspector.
I asked The Boy if the inspector asked him any questions. "No", he answered incredulously, "I asked HIM questions."
"What about?" I asked, wondering what burning issues with the education system had been discussed at such a high level.
The Boy shrugged his shoulders. "His favourite cake is lemon meringue pie", he said.
As a child I loved reading. Loved opening a book for the first time, the smell, the newness. No better feeling than bringing a new book home and seeing how late I could stay awake to finish it. And Enid Blyton books were the best books of all - Mr Pinkwhistle, The Magic Faraway Tree, Adventures of the Wishing Chair. I remember as the house slept, a small boy hid under the duvet at night with a torch, escaping into secret lands...
The Boy can read. Pretty well too. For years it was a skill no-one knew about, just another thing to keep from the rest of the world. Young children are taught to read aloud, but he could never master that. He refused to sit and read with anyone. The process of reading the letters and then forming words was tough enough, never mind having to say them aloud to someone afterwards. For a long time it was assumed he just couldn't read at all.
He loved picture-books though. Even from a very young age. They say a picture paints a thousand words, and for so many of those with autism, there's never been a truer phrase spoken. He could spend hours looking at pictures, taking in every tiny detail, writing silent masterpieces and volumes only for him. At night time, there was no bedtime story, not in the conventional sense anyway. He would just sit and turn the pages, drinking in the pictures, creating a story in his head that was ten times better than the stupid words could ever be.
And then one day when he was playing the video game Lego Star Wars, I snuck into his room and realised he was reading the instructions on the screen. Secretly, away from the prying eyes of the world, he could read. How he'd learnt to will forever be a mystery...
And now his secret is out there he continues to read well. At school he even reads out loud to the class. But whether it will ever be a source of enjoyment for him remains to be seen. At the moment words are just a means to an end, there's little pleasure in them, they're simply a source of information - a gateway to the visual world, not an escape from it.
The other day, he was off school for one reason or another, and so we did some lessons at home. One of them was English. I said that we were going to take it in turns to read to the class as he normally does, and to go and choose a book. And he came back with The Magic Faraway Tree. Dad's favourite. And as he sat next to me and he started to read I looked down and saw his chubby finger following the words, and I was transported back all those years ago. It could have been me, hiding under the duvet, getting lost in the Land of Do-As-You-Please with Moonface and the Saucepan Man.
Secret readers together.
The Boy loves animals. Dogs, cats, rabbits, guinea pigs. It doesn't matter what animal it is, it's a friend for life.
I suppose he's never had a fear of them, that's the thing. Now, I'm not suggesting for one minute he's Dr Dolittle or anything, there have been plenty of animals that have been roughly handled, poked and even had the old 'finger to the eyeball' treatment along the years. But for some reason animals seem to get him. They tolerate him far more than some people are able to.
I remember when The Grandmother's dog had puppies, and The Boy as a toddler rolled round the lawn with them. And in a way he fitted in with them more than he was ever able to in the playground. They climbed all over him, biting him, scratching him, licking him. And looking back at the photos of that day it's hard to imagine a time when he was ever happier.
Visiting children's farms was always one of his favourite trips out, and it still is. Feeding the animals, having a cow lick your hand or a llama have a little nip are all part of the fun. Trying to catch chickens, or telling the bigger goats off for pushing in, it's better than any birthday party.
But animals have caused pain in his life too. The sudden disappearance of the goldfish one morning after Dad cleaned the tank with Fairy Liquid... The unbearable sadness and silence that followed the death of The Grandmother's dog last summer. And when the hamster died, the unforgettable howl into the dark pleading, "who will look after me at night time now?".
Then this morning, his all-encompassing love affair with the animal kingdom came to an end. A scream came from his bedroom. "GET OUT!! STOP FOLLOWING ME!!!!!!". I rushed in, panicking, wondering what was going on. "GET IT AWAY!!", he yelled, pointing to the wall, "KILL IT!!!!!!!"
It was a Daddy Long-Leg. Turns out he's only human, after all.