‘I Wish It Could Be Christmas Every Day’

Christmas morning, with Robyn actually joining in a bit!

Last time out I told you about how, until last year at least, my daughter Robyn totally rejected anything to do with Christmas.  From reading this you could be forgiven for thinking that all children with autism hate Christmas, but it isn’t necessarily the case.  From what I have read, a loathing of Christmas due to the complete disruption it causes is not uncommon among children with autism, but there is also twinkling lights and excitement to stimulate the senses, and some autistic kids really enjoy this.  In our house, there is a 50/50 split in attitude towards Christmas amongst our autistic offspring.  Robyn hates it.  Liberty absolutely loves it, possibly enough for both of them.

 

For Libby, Christmas starts as soon as possible.  If she gets a sniff of the festive season in October, then she’s all over it; she starts singing Christmas songs and doesn’t stop until about April.  She watches The Snowman all year round.  We decorate our house (minus the main tree) in early December, and as Libby walks around the place she regards her environment with wondering awe.  She can’t resist handling the figures in the Nativity and gazing longingly at the twinkling lights.

 

But before we get to Christmas Day, we first have to negotiate Christmas Eve.  It’s a day where we have to make sure we get out with the girls as we know they’re likely to be mostly cooped up in houses over Christmas and Boxing Day.  Of course, the British weather means that outdoor activities are often ruled out so, in their younger years at least, we would take them to one of those indoor play centres that go by the name of something like Wacky Warehouse, Jungle Gym or Chucky Cheese’s – it seems you can call them what you like as long as the phrase uses alliteration.

 

The problem with these places as a destination for our pre-Christmas workout for the girls is that not many other parents take their kids to them on Christmas Eve.  These people are probably too busy with Christmas preparations and know they can get their kids to be good at home by threatening them with letting Father Christmas know they’ve misbehaved.  Christmas Eve is never a good day for kids to upset the big fella.  But that threat doesn’t really cut much ice in our house.  So, because their indoor playhouse business is not very busy and the workers themselves have plenty to do in their own homes, they have a tendency to close early.  We were caught out by this one year, as they were already closed when we got there, despite the fact that it was a good couple of hours before the official closing time.  This meant that we had to find some other place for the girls to expend some energy on a rainy Christmas Eve; not easily done.

 

The following year we called ahead to see if they were staying open until the official closing time and they assured us that they were.  When we arrived though, they tried to turn us away because they had decided to close early after all.  Karen and I are not the kind of people who complain about service in restaurants or shops; we’re just not pushy people.  However, we were prepared to make an exception for someone who was about to ruin our Christmas by not allowing the girls to have their last mad run around before the beginning of the festivities.  We told them we’d called ahead, we had special needs children who needed to use their facilities and we weren’t going away.  They asked if we minded if they clean up and vacuum the place while the kids played.  We were more than happy for them to do so as long as they let us in, and this meant that George, Robyn and Liberty had the run of the entire place, and after an hour or so they were thoroughly sweaty and tired.  Which is the whole idea.

 

In our preparations for this Christmas, Liberty has started to do something that reminded me of myself growing up.  When I was quite young I liked to go snooping in my parents’ room for Christmas presents that they might have bought for me, although I learned after a while that knowing what presents you were getting made Christmas morning a bit rubbish.  In fact, I actively avoid finding any presents in our room these days, and I still hate it if I inadvertently stumble upon something that Karen’s bought me for Christmas, as it has spoilt my surprise.  So, this Christmas, Libby has learned to snoop.  Karen and I have had to remember to keep our bedroom door locked shut at all times or bad things can happen.

 

A couple of weeks ago someone left the bedroom door open not long after we’d had a special delivery from Disney.co.uk.  The box was a veritable treasure trove of Disney goodies, all of which were for the girls on Christmas morning.  Trouble was, once Liberty had seen them there was no way of explaining to her that she wasn’t allowed to have them until Christmas Day – that’s a concept she just can’t understand.  She gets impatient waiting for her popcorn to pop in the microwave, so there’s no chance of her getting her head around the idea of waiting three or four weeks for a present she knows is on the other side of the door right now!  It was a hellish morning for us as Libby went nuts at least every five minutes to try and get into our bedroom to get her hands on those presents.  So, when she was out with her care workers that afternoon, Karen wrapped them up and hid them in the loft.  Once we could take Libby into our room and she could no longer see the Disney toys, she was happy to forget about it.  The beauty of it is this; on Christmas morning it will be like she’s never seen these presents before, and she’ll gasp in awe in that wonderfully over dramatic way of hers that she copies off the movies she watches.

 

We eat Christmas dinner at my Mum and Dad’s house, and it’s a big traditional affair.  Most of our family that live in this country, probably about 25 of us, gather around a huge table for roast beef (we’ve never understood why the most important meal of the year is celebrated with the cheapest, driest meat there is, so we have our favourite instead) with all the trimmings (not just some of them, all of them).  But Karen and I have learned to take necessary precautions if we have any intention of participating in this family celebration.  Everybody else in the family may be happy to sit for hours and eat and pull crackers and tell lame jokes and wear paper hats, but the girls aren’t.  So Robyn takes to the festive table with an iPad with all her favourite movies on, and Libby has a laptop, both of which have headphones attached.  And they don’t eat roast dinners, either.  So they have curry instead.  We make a big pan of curry on Christmas Eve, taking a couple of dishes to my Mum’s for dinner, and that way they’ve got plenty of their favourite meal for Christmas and Boxing Day, whilst the rest of us are eating rather more traditional fare.

 

We are getting better every year at doing Christmas with our daughters, because it’s all about handling expectations.  We can’t allow ourselves to think we’re allowed to socialise at someone else’s house for hours whilst the girls sit and behave; it’s not going to happen.  A number of Christmas Day celebrations in the past have ended prematurely, with me dragging the girls to the car and taking them home where I brood for the rest of the day, wondering why I’m left sitting on my own at home while the rest of the world seems to get to spend quality time with their nearest and dearest.

 

So, Christmas dinner now starts with a phone call from my mum to let me know exactly when the Christmas dinner is going to land on the table, which is served up with curry and gadgets for the girls.  And if I can manage to sit and chat with my family for half an hour after dinner without the girls kicking off completely, I can consider the day a success.  As long as expectations about what kind of day we’re going to have are reigned in, I can settle down on Christmas evening and watch Doctor Who with a tin of Quality Street chocolates and a glass of Vimto and ginger ale, perfectly happy with my Christmas, knowing my girls are happy, too.

Christmas dinner at my Mum & Dad's. To the right of the picture you can see that my old Macbook graces the table for Robyn's entertainment!

 

 

‘It’s Beginning To Look A Lot Like Christmas’

I love Christmas.  Always have.  It’s a family time, a spiritual time, a time of peace, a time of love, a time of giving and, let’s be honest, a time of indulgence.  It’s different from every other day of the year; we do things that we don’t do at any other time, and this is partly what makes it exciting for children and nostalgic for adults.  We add new decorations to our homes, new lighting and new smells from fragrant candles.  We eat different food, we move our furniture around and bring trees and shrubberies indoors and put lights on them.  When you think of the day itself we do very few of the mundane things we do on other days, and we indulge in ceremonies like the opening of presents and the carving of fabulous food.  As the song says, it really is the most wonderful time of the year, precisely because everything is so different.  The normal world gets put on hold for a few days whilst we indulge in this festive fantasy.

Now imagine that your ability to deal with the everyday world depends entirely on things being kept the same.  Imagine that the world only makes sense when a pattern of order is followed.  And then, one day, let’s call it Christmas Day, your whole world gets turned upside down.  Everything you expect to happen, doesn’t happen, and everything that happens is not what you expect.  How do you deal with that?

I’ll tell you how.  You shut yourself away and pretend none of it is happening.  You ignore it completely and just try to do what you always do.  We have camcorder footage of Christmases gone by, and the reaction of our children couldn’t be more different. A young George, on entering the room on Christmas Day, falls to his knees in awe like the shepherds and wise men in the stable in Bethlehem did 2,000 years ago.  Although their awe was due to being in the presence of the Saviour of mankind, rather than just being in the presence of a ruckload of presents.  But, you know, he was pretty excited.  The video also shows Robyn walking into the room, walking straight past the piles of presents and straight out of the other door, closing it behind her.

In the years that followed we tried really hard to do things for Robyn that we thought she might enjoy so we could get her to stay in the room with us and be a part of our family Christmas morning.  One year, we bought her a Disney Princess camp chair with cup holders that held a new cup with a curly straw with a serving of her beloved Pepsi and a packet of her favourite crisps of the time (Nice ‘n’ Spicy Nik-Naks – good choice!).  It didn’t work.

Another year we bought an indoor play tent and put all of Robyn’s presents inside in the hope that this would pique her interest, but to no avail.  I remember a Christmas morning where I’d bought her Toy Story 1&2 on DVD to get her interested in opening presents.  I gave her this gift first and managed to get her sufficiently interested in it to unwrap it, and she was suitably pleased with the contents.  So pleased, in fact, that she took it into the next room, put the film in the DVD player, shut the door and refused to come out for several hours until she was entirely convinced that we were done with the whole present unwrapping thing.  If any of us entered the room (say, to go through into the kitchen), she would dart to the door to shut it behind us.  For Robyn, Christmas had to be kept out at all costs.

After a while we learned not to expect anything but disdain from Robyn on Christmas morning.  When we had the extension built it meant an additional Christmas bonus for her.  It meant on Christmas morning Robyn could walk past the Christmas presents in the lounge, into the dining room, close the door behind her, then walk into the new playroom and close that door behind her, too.  That way she was two whole rooms and two closed doors away from all of that Christmas nonsense.

What we realised in time was that trying to make things ‘special’ for Robyn actually just made things worse.  What she was rejecting was the whole ‘differentness’ of the day.  Getting her Pepsi and crisps for breakfast and building special tents just made an already different and difficult day even more unusual and distasteful for Robyn.  We accepted defeat and resigned ourselves to the fact that Robyn was never going to join in on Christmas morning.  We gave up wrapping presents for her; what was the point?  She might be interested in the items eventually, but she wasn’t interested in going through the rigmarole of opening complicated wrapping, and she certainly wasn’t interested in them on Christmas morning.   Here was yet another special family occasion that had become a casualty of autism in our home.

And then, as if being rewarded by the gods of autism for our willingness to accept Robyn’s fear of Christmas, we were given December 25^th 2010.  Finally, after years of toil and trial, we were blessed with our very own little Christmas miracle.  It seemed as though Robyn could actually deal with Christmas morning if we just left her alone and didn’t try quite so hard.  I think it was also possible that, in a weird way, Christmas had become part of a routine for her.  Robyn now seemed to accept that, once every 365 days we had this one day that was very different to all the others, and actually, if she could get past the differentness, it turned out to be dead good.  If she could turn a blind eye to all the ceremony of the day, her reward was more Disney Princess merchandise than she could shake a rather large stick at.  She knew that when we started to put lights, trees and decorations up in the house that we’d soon have that odd day with all the presents.  So, last Christmas morning we watched in surprise and wonder as our three children sat together and opened presents.  We didn’t know whether to laugh or cry.

So, those of you with non-autistic children, as you watch your children sit together, opening gifts like it’s the most natural thing in the world and taking your generosity for granted , remember to be quietly grateful.  Some of us have waited years to see that happen, and some of us have not seen it happen yet.  Whether or not we will get a repeat performance this year or not, I do not know.  But I do know there is nothing I can do to make it happen either way.  As always with autism, acceptance is required to find the peace within.  Even at Christmas.

...and Robyn wraps herself in a quilt and puts two doors between herself and the festivities. Drinking Pepsi for breakfast in a fancy glass is the only clue it's a special day!But George enjoys Christmas morning.......and Libby enjoy it, too.

‘The Flood’

I’ve never said there aren’t some serious upsides to having special needs daughters. I believe I have mentioned previously that the council built an extension to our house to allow the girls to have separate bedrooms. The additional bedroom was built upstairs, so underneath they also added a playroom for the girls to have their own space, a utility room for the endless washing that the girls create and a second bathroom.

 
The bathroom is where I’m focusing today, because the bathroom made a crucial change in our lives. Yes, having a second bathroom is always handy, but it’s the design of the bathroom that is of particular interest here. I believe the term they use is a ‘wetroom’. There is a toilet, a sink and a shower in the wetroom, but the shower does not have a cubicle or a door of any kind; the water just falls straight onto the floor. Of course, the floor is covered in some sort of plastic that meets the tiles which start from about six inches up the wall. Not to put too fine a point on it, the room is waterproof. The girls can go and get showered and make all the splashing they like without doing any damage to the house. The shower and the toilet are both built into the wall, so there is a minimum of buttons for them to mess with and cause havoc. The shower itself was very expensive and quite technological. Plus, the lack of cubicle means the person supervising them has easy access to help them get cleaned, as they are not cocooned in a bath or cubicle. Things weren’t always this simple….

 
Prior to the arrival of the wetroom, we showered the girls upstairs in the shower that was in the bath. The girls love playing in water. They like going swimming, playing in the paddling pool, jumping through the sprinkler in the garden, paddling in the river, you name it. Show Libby a two foot wide, one inch deep puddle and she’s immediately pulling her shoes and socks off in order to dance about in it.

 
Bath time, then, was fun time for the girls. The shower was a much better option than the bath for us, though. When Robyn had a bath she would sit on the back edge and push herself off it to slide into the bath, creating a minor tsunami upstairs that flooded the bathroom floor. However, they managed to get water everywhere whatever method we used to wash them. Regularly, you might be sitting at the table in our dining room, eating your dinner or doing some work, minding your own business, when suddenly you would be drenched by a deluge of water. The girls would get water all over the bathroom floor, inches deep, which would seep through the lino onto the floorboards and through the ceiling until it was running onto the heads of the people downstairs. Then it was all hands to the pump to get as many pans and towels as you could to catch the water so we weren’t flooded downstairs, too. The water would run through the cracks that had appeared in the ceiling in the middle of the room, as well as down the walls. This was not a once in a blue moon event like climbing on the roof; this began to happen with nauseating regularity.

 
A friend of ours recalls a time she visited our home. She was sitting at the dining room table, talking to Karen, when water suddenly came cascading down the wall next to where they were sitting. This had happened many, many times by this stage, so Karen glanced at it and casually grabbed a towel to catch the water. She then just carried on with her conversation, water continuing to flow down the wall, as if nothing even remotely unusual was happening. Our friend sat there agog as the house was flooded. She knew that if this was happening in her house it would be a major catastrophe and people would be running around in a panic. Karen had barely given the situation a second glance. It goes without saying that when we had the extension built, we also had plasterers in to re-plaster the ceiling in the dining room.

 
Of course, the girls still find ways of causing trouble. Because the danger of flooding or drowning has been eliminated with the wetroom, we are happy to leave the girls to play in the shower for a while before we wash their hair. Libby likes to put the plug in the sink and fill it up till it overflows with water, just because she can. She also likes to sneak a plastic sandwich bag and a toy fish into shower time. She then puts the fish in the bag and fills it with water so she can act out scenes from ‘Finding Nemo’. It’s not unusual to find her in the bathroom at shower time pretending to be the character of the little girl Darla, banging the fish up and down in her bag of water whilst shouting at it, ‘Why are you sleeping!!’

 
And there is one other thing that we have to look out for. We thought we could never have a flood again with the advent of the wetroom, but Robyn will always find a way to get round your best laid plans. Not long after the wetroom had been built, I returned to the shower, having left her in there for a short while, to find water lapping under the playroom door. She had managed to flood the bathroom and the utility room so it was all a good inch deep in water, simply by lying on the bathroom floor on her back and covering up the plughole. Thousands of pounds spent on building a technological solution to our bathing issues in order to create a safe and disaster free environment, all circumvented by Robyn’s bum. She’s a genius.

The shower, built into the wall to stop them breaking it.

‘Animal’

I love this picture. Robyn takes Jenny (mum's old dog) for a walk in Erddig, a National Trust Park.

A few years ago, ITV (a British TV channel) aired a drama called After Thomas.  It was the story of a family consisting of two parents and their son Kyle who had autism.  I found out about it the next day when everyone else watched it and asked us if we had seen it, too.  ‘No’, we replied, ‘why didn’t you tell us it was on?’  It seems my media awareness means everyone assumes I know when anything interesting is on TV.  No-one thought a quick courtesy call to see if we were watching was a good idea.

I remembered about the programme recently, and decided to look to see if it was available on DVD.  After a search on Amazon I found it was, so I bought it for Karen and me to watch with George on a family night in.  The film told the story of how Kyle overcame aspects of his autism, including much of his aggression, when the family bought a dog, which they used both as therapy and to help Kyle communicate.  I enjoyed After Thomas at the time, but I cannot bear the stupid thing now.  You see, Libby also chose to sit down and watch it with us, which is surprising considering that it wasn’t animated or even particularly kid friendly.  Perhaps she spotted a kindred spirit in Kyle.

Anyway, Liberty liked it so much that she hunted down clips of After Thomas to watch on YouTube, which she watched repeatedly.  The thing was, Libby’s favourite scenes were the ones in which Kyle was having huge tantrums in public.  Libby thought this was hilarious.  Now, dealing with a public meltdown from your autistic offspring can be enormously challenging.  However, you are helped by the fact that you love this child and, sometimes at least, those strong feelings help you to keep your temper under control as you do your best to help them overcome their frustration.  When a kid is having a meltdown in a film, you’ve just got all the irritation of the awful noise this kid is making, without any feelings of compassion because it’s just acting; it isn’t even real.  After a while my catchphrase became, ‘No Kyle, Libby!’  The very sound of listening to this kid going faux nuts just set me on edge.  She was only allowed to watch it with a decent pair of headphones on.

This is a rather long introduction to this post’s theme of the girls’ experiences with animals.  Possibly because of After Thomas, my mother and others have often suggested that we get a dog as it might help the girls to make progress.  Whilst the idea has merit, the response to this suggestion is always, ‘no’.  I am quite aware how outrageously harsh this sounds, but we’ve already got a couple of characters in the house that we have to feed, wash and take for walks.  Plus they have a tendency to wreck the place (like the dogs we had growing up) and we often have to clean up wee and poo from inappropriate places, too.  The girls might enjoy a dog, but we’ve got our hands full already, thank you.

My mum and dad have always kept dogs, and going over to their house to take their dog Molly for a walk is a favourite activity for us.  Robyn is entrusted with holding Molly’s lead and she responsibly walks her along the streets, until we reach the country park near mum and dad’s where we can let her off her lead (Molly, not Robyn).  There was a nice moment with Robyn and Molly  recently when mum brought the dog over to our house.  As Molly crouched under the table, Robyn got on all fours to go nose to nose with her.  It was a lovely scene as dog and daughter checked each other over, and I don’t doubt Robyn would enjoy having a dog around the house.  Liberty is less keen, and often reacts as if she is afraid of Molly when we arrive at mum’s house, though she seems to get over this quickly.

Robyn does seem to have a way with animals in general, actually.  As I have told you previously, the land that backs onto our house is a grazing field for cows.  Robyn has been known to sit on our side of the chain link fence and beckon the cows to her.  They all cease chewing the cud and crowd round her as she makes her autistic noises, seeming to have them under her spell.  We call her ‘The Cow Whisperer’.  When we go over towards the cows, they all quickly walk away.  The cows seem to sense something with Robyn; possibly a complete absence of fear and someone who would never deliberately harm them.  I best not tell the cows how often Robyn likes to tuck into their friends when she goes to Mcdonald’s, though….

Not all creatures have fared as well at Robyn’s hands, however.   I sat down one time to find I was sitting on something that wasn’t there a minute ago.  It turned out to be a dead bird that Robyn had brought in from the garden for me, as if she were a cat.  I’ve always hoped that she found it dead to begin with, rather than her being a bird killer.  Finishing creatures off is not beyond her abilities.

We tried having pets a few years ago when we bought George a guinea pig called Neo.  Unfortunately, Neo was the runt of his litter and quite weak; he wasn’t with us for very long before he died.  To help George overcome his grief at losing Neo, my mum bought him a new guinea pig the next day; a much livelier fellow that he called Scamper.  We covered the frame of an old divan bed that Robyn had destroyed in chicken wire, to use as a run for Scamper to play in (the bed was broken by Robyn’s constant jumping and tipping upside down – another story entirely).  It was an ingenious idea; plenty of space for the little guy to run about whilst keeping him perfectly safe from predators.  It was also light enough to move around different areas of the garden.   It turns out this last bit was a major design flaw, though.  One afternoon, Robyn decided to give Scamper a bit more freedom and lifted the bed frame up to allow him to escape.  He ran into the field via next-door’s garden and we never saw Scamper again.  Poor fella.

One summer, Robyn kept coming into the house with her hands seemingly covered in wallpaper paste.  The paste was clear, gooey and thick, but was also quite difficult to wash off her hands.  It had to be scraped off, rather than it rinsing off with warm water and soap.  We had no idea where she was getting this viscous substance from, just that she quite often returned from the garden with her hands covered in the stuff.  Eventually we watched her playing outside and found the source of the ‘wallpaper paste’.  Whenever Robyn found a slug in the garden, she picked it up and literally squeezed the life out of it until it exploded in her hands.  We were not so keen to volunteer for the job of washing her hands after we had found out that the paste was actually slug innards.  Top tip, though; if you’re decorating the house and you ever find yourself running low on wallpaper paste…

A frosty Boxing Day morning. George, Robyn, Liberty and I take Molly for a walk.

‘Cruel Summer’

Robyn enjoying a rare, British, beautiful summer's day. On the roof. Like you do.

And so, we approach the end of the summer holidays here in Britain. For some of you, ‘summer holidays’ is simply a reminder of more innocent times gone by when you had a sizeable chunk of the summer months with nothing to do but lark about. For others, it’s still a big part of your lives; either because you are still in education or you have children that are.  Your experience of the summer break will hugely affect your feelings as the holidays come to an end. You will either be disappointed or thrilled. As a teacher I have to return to work in a few days; never a good thing.  However, when Karen packs the kids off to school next week (after six weeks without a break) she will be metaphorically punching the air.  She may literally punch the air in celebration, I don’t know.  As I’m at work I’m not there to see what she does when there’s no-one around, but a bit of fist pumping in these circumstances would seem reasonable enough.

 

It seems, then, a good time to reflect on what has happened this summer.  The good news is that our summer was fairly uneventful.  Uneventful is always good in our house.  Uneventful means not having to deal with escapes, roof climbs or the emergency services.  I remember the first day of the holidays quite well, though. This summer, we had a fair amount of support for the girls from the local authority through various outlets, for which we are grateful.  However, there are still plenty of days without support, which means finding something for the family to do so the girls don’t go stir crazy.  The first day of the holidays we took a trip out so we could all go for a walk.  On our return we decided to call in at Iceland (the frozen food store, rather than the country with rubbish banks and pesky volcanoes) to pick up some iced lollies for Libby and a Magnum for Robyn (to pick all the chocolate off and throw the ice cream away).  We took the girls in so that they could choose what they wanted, and Liberty picked up a box of Twisters.  She then decided she wanted a huge bar of chocolate as well, which wasn’t happening as she was already having an ice cream and we had chocolate at home.  With a throwback to the bad old days she threw herself to the ground and started kicking and screaming to the dismay of her parents and our fellow shoppers.  I managed to physically remove her from the store and drag her to the car.  Her temper continued unabated until someone put a Twister ice cream in her hand, at which point it immediately ceased.  Just the way to start 43 days off school with the kids: A meltdown in Iceland.

 

At a local country park they have a scheme where they hire out specially adapted bicycles for disabled people and their carers.  Karen and I took Robyn and Libby one day, and we got three wheelers with two seats alongside each other, rather like the front seats of a car.  Both seats have handlebars (though the carer sits behind the set that actually works…), there are two sets of pedals slightly in front of you (a bit like a pedalo) so you can both power this heavy vehicle, and there is a gear leaver between the two seats.  I took Robyn and we set off on our ‘bike’ around the walking path around the park.  It wasn’t too difficult to power this contraption along the flat terrain, and it was a lot of fun going downhill.  Robyn giggled with delight as we got some speed together, and that is always something that is lovely to see.  However, going up the hills was horrific.  There only needed to be the slightest incline and it was down into first gear and a major, major effort to get the hulking beast to move.  Of course, at this point Robyn no longer felt the need to pedal.  Why would she pedal uphill?  That’s hard work!  Eventually I had to get off and push the bike uphill while Robyn sat there, smiling at the world going by.  The idea that getting off and walking for a bit would make the bike lighter and life a lot easier for her dad never even crossed her mind.  It’s a lovely life our girls lead.

 

Another little activity we do on days off with the girls is to take the car to be washed.  Whilst the car gets a more effective clean if it is washed by hand, this is not nearly as fun for the girls as going through an electric car wash where your car is attacked by those big furry monsters.  I actually remember thinking this was exciting when I was very small and the girls still really enjoy it.  It’s funny to watch their faces light up as the rollers close in on the car and squirt water everywhere.  As is the case with many situations in life, Libby sees a link to an animated film she likes, in this case Shark Tale. This was the one where Will Smith voices a character who works at a car wash, so of course, they sing the classic Rose Royce disco tune of the same name in the film.  When we’ve gone through before we’ve had the CD in the car and been able to play it for Libby to sing along while we drove through the car wash.  This summer we didn’t have it in the car, so Libby made us sing it for her instead.  There’s always that slight worry that the people operating the machinery will hear two grown adults singing Car Wash rather excitedly and wonder what sad acts would do such a thing, but we got past the stage of being embarrassed with our kids years ago.

 

An encouraging development this summer saw our local cinema stage a showing of a film specifically for children with autism.  They had brighter lighting, the sound levels reduced and the kids were free to wander around if they wished, knowing that other parents and customers would not be judging them.  We did not have Libby on the day it was on as she was at a care centre for children with autism.  We told the workers at the centre about it, though, and they took all the kids along for that days activity, which was great.  I’m sure it was easier to deal with Libby in this environment than it normally is when we take them to the movies with the general public.  The girls enjoy the films, of course (especially Libby), but they sometimes get a little excited and can make squealing noises or sit up and down in their seats a lot, which can lead to the inevitable tutting and huffing from other parents.

 

Back in February, to get the girls out and about one rainy morning during a school break, we took them to see the animated film Megamind.  Both girls seemed to enjoy the film but, as is often the case, they did get over excited at times and make a bit of noise.  This isn’t too bad during noisy parts of the film, but is much more obvious during quieter moments, so you hope they keep their jabbering and squealing for the action sequences.  Towards the end there was a very quiet and emotional scene, so I was hoping the girls would stay quiet and not ruin the moment for everyone else.  Luckily, they didn’t say a word and just watched the scene unfold.  Then Liberty very deliberately leant forward in her seat and, as if it were the most acceptable thing in the world, let out the most enormous fart you can imagine.  She then casually relaxed back into her seat, never once taking her eyes off the screen or showing even the slightest hint of feeling self conscious in any way.   Karen and I rocked back and forth in our seats, simultaneously dying of both laughter and embarrassment.

 

I love the holidays, and I need a break from work as much as the next person, but you’ll understand that there is always a small part of me that is a little relieved to get back to work after six weeks with the girls.

Megamind. Libby enjoyed the film, but be grateful this isn't smell-o-vision...

Papa’s Got A Brand New Bag

Robyn quickly gets to grips with her (my) new iPad.

There’s an episode of The Simpsons where Homer tries to buy a camper van for his family.  The sales guy agrees to sell him a top of the line model on a ‘buy now, pay later’ scheme, but when he puts Homer’s name into the computer, buzzers and sirens go off to indicate that Mr Simpson is not entirely suited to such a premium line of credit.  This has not happened to me when buying something on credit, but I am constantly surprised that something similar does not happen when I buy insurance.  For many people, insurance of all kinds is not a particularly good investment.  You pay moderate sums of money over a long period of time that can eventually add up to huge sums of money, for which most people get very little return.  Personally though, if I had to choose one word to describe the concept of insurance, it would be this one: awesome.

Robyn is happily playing on my new iPad 2* that arrived yesterday.  After a lot of typical Dickenson House wear and tear, my original iPad died the other week.  Of course, we are covered with Robyn & Libby Special insurance, so a quick call to my insurer and they picked it up to fix it.  As it was beyond economical repair they sent me a healthy sized cheque for the full amount of a new iPad 2 minus the £50 excess charge.  Bob’s your uncle, Fanny’s your aunt, I’m now up to the minute with the latest Apple gear.  But surely, I hear you say, you can’t claim on your house contents insurance for everything your daughters break, can you?  Well, no.  We don’t do that.  What we do is this: you know when you buy something in shops, particularly electrical items, and they say something like, ‘Would you like to extend the guarantee on that to three years for an extra £24.99’ or whatever?  You say, ‘No thanks’, right?  I do consider my answer carefully first, but quite often my answer is, ‘Yes.  Yes, please.’

You see, these extended guarantees cover you for any fault to your product that occurs over the three years, but crucially, they also cover you for accidental damage.  Of course, what constitutes an accident can vary from house to house.  In most houses that means that only if something is broken unintentionally are you covered.  Well, I don’t live in most houses; I live in a house with Robyn and Libby.  That’s right, the rules are different for us; even if my girls get bored with a product and throw it at the wall, because of their condition that’s technically an accident and the policy says I can have a brand new one.

I bought my first iPod in 2006 and bought the insurance cover for it at my favourite store, Argos.  Michael McIntyre may mock the place, but I love Argos.  Argos is where they sell you extended warranties on electrical items that are considerably cheaper than those you buy in proper electrical stores.  And, because their sales assistants have practically zero knowledge of electrical goods, when I take my iPod back and say, ‘This is broken, I need a new one’, they just go and get me one without even trying to switch the broken iPod on.  It wouldn’t matter if they did check; the thing really is broken, but it’s quite pleasant not to have to deal with the third degree every time the girls break something. Most of the time, they don’t even sell you a new policy (though more recently they seem to have got wise to this).

So, allow me to make this quite clear for you.  You buy a product, let’s say an iPod.  It breaks not long after because Libby leaves it on the trampoline outside all night and it rains (true story, more than once).  You can’t return it under the original guarantee from Apple because it’s your fault.  But you can return it to Argos if you paid extra to extend your guarantee and to cover accidental damage.  So they give you a new one.  And that guarantee you bought originally is still valid.  So, you happily take home your brand new iPod.  One day, a couple of months later, Robyn has a tantrum, throws your iPod and smashes it on the corner of a wooden chair.  So you take it back to Argos, they give you a new one, and my original guarantee is still valid.  With just one policy that I bought for about 30 quid, I was able to take my iPod back six times to get a brand new one.  That’s six new iPods for the princely sum of thirty of your English Pounds, people.  I am not being in any way dishonest; I am covered for accidental damages and I just happen to have two little cherubs who have lots of accidents.  This is just a system that works poorly for most, but very well for us.  I must confess, however, that I have taken to making use of the number of different Argos stores in our area when I take things back.  They may have thousands of customers, but I think they’re starting to recognise me now, and it’s getting a bit embarrassing.  ‘Hi, yeah, it’s me with the autistic kids, again.  Sorry, I’ll be needing another iPod/DVD player/pair of headphones/toaster/microwave oven/computer keyboard/kettle/hairdryer/fridge freezer/steam generator iron/laptop computer.’  Yes, we have had every single one of those items replaced on an extended guarantee, some of them more than once.

We’re not the only people who need to be insured because of the girls, either.  Recently, Karen and I were having something of a well-earned lie-in, thinking that the children were all sleeping soundly in their beds.  It turned out that Robyn wasn’t sleeping at all, and had in fact escaped.  A knock on the door awoke us from our sleep.  Karen went down to answer the door and it was our friend the farmer; Robyn had fancied playing in cow poo again, this time at the crack of dawn.  Normally we are quickly alerted to her escapes but, due to us being asleep, this one caught us on the hop.  The farmer was very pleasant and understanding about the situation, which is always a relief for us in these circumstances.

However, a week or so later the farmer came back to the house, still being very genial, to tell us the full details of Robyn’s most recent escape.  In her adventures with the cows, she had left a gate open that had allowed some of the cows to escape their pen.  They had gone into areas where they weren’t to go, with floors that were not suitable for cows to walk on.  A calf had done the splits on all four of its legs on the slippy floor, couldn’t get up and had to be put down.  On its own, this is a sad tale of a poor cow that died, and I did feel genuinely sad for the poor blighter.  But the farmer wasn’t here just to make us feel bad.  He had to get details about Robyn’s condition so he could make a full report to his insurer.  It turns out the young bull was worth up to £10,000. Eeek!  It’s one of those situations that isn’t really anyone’s fault, but that didn’t stop Karen and I from feeling terribly guilty about the poor calf and that the farmer that had to claim on his business insurance.  Still, at least the farmer was 10 grand up on the deal, eh?

Insurance does have its benefits, then.  If you’re a bit of a techy geek like me, it’s always disappointing when companies come out with a new version of a product you already have.  You’ve got your iPhone 3 and you’re perfectly happy with it, and then they bring out a shiny new iPhone 4* and you’re left feeling behind the times.  I don’t suffer from that feeling very often.  When they announced the iPad 2* friends asked me, knowing of my predilection for all things Apple, if I was going to buy one when it came out.  The answer was no.  I knew I didn’t need to go out and buy one.  I didn’t need another iPad as the one I had was perfectly fine until it broke beyond repair.  And in our house, that’s always just a matter of time.

Let me be clear, I have never deliberately broken an item because I fancied having a new one (let’s be honest, I’ve never really needed to).  It’s just that we have a lot more ‘accidents’ than other people do.  We also have a variety of insurance policies to spread our liabilities so one company doesn’t take the hit all the time.  We have extremely comprehensive home insurance, another policy called Safe2Go that insures all our portable items (they bought me my Macbook Pro* after Robyn smashed my old Macbook – nice work guys) and then we have individual extended guarantees on many less expensive items.  I checked when I bought the new iPad this week how much a 3-year warranty would be for it: £189.  No, thanks.  I’ll just have to claim on one of my other policies if (when) it breaks again.   You might think all this insurance costs a lot, and I’m sure it does add up.  But it only costs a fraction of what we would pay to replace all these items that Robyn and Libby break with such nauseating regularity.  There are many small sacrifices I have to make with my daughters, but insurance policies mean that I don’t have to sacrifice all of my gadgets, and it also stops me from getting too cross with them or resentful about our situation when they break my stuff.  In fact, thanks to the girls, I’ve always got the flashiest technology around.  At least until those insurance guys get wise to me and the alarms start to go off in the shop when I ask for an extended guarantee…

*Other electronic equipment not made by Apple is also available.  It’s just rubbish.

...And what better way to make use of the new cover by setting it up as a stand so you can watch Sleeping Beauty whilst tucking into some curry. Nice.

‘I Need A Doctor’

Well, welcome back. We apologise for that political broadcast on behalf of the Teachers’ Pension Party, and are pleased to inform you that our regular service has now been resumed. Whilst we’re making a few things clear, there’s something else I wish to reiterate. Last week someone told me through Facebook that some of the things I’d written in a previous blog post (‘What A Fool Believes’) were ‘dead wrong’. My assertions on how my daughters learned educational and moral issues were completely incorrect, apparently. And this was, of course, from someone who’d never met my children. With respect, madam, I would politely request for you to bog off, whilst I repeat this little mantra one more time: I am not an expert on autism; I am an expert on my daughters. I’ve spent 13 years or more dealing with them every day, and if I say they struggle to learn moral and educational lessons, you can bet your boots that I’m right. OK?

So. This morning I had to give out letters to some of the kids in my form encouraging them to get their MMR jab. It should be noted that my form consists of 12-13 year olds. There is a legacy from the scare over the MMR jab, which jeopardises the general immunity of kids in this country from measles, mumps and rubella. You may recall a few years back that a doctor alleged there was a link between the MMR injection and autism. Right when the hoo-ha about all this kicked off we were discovering that Robyn was autistic, so it concerned us more than most. Our experience with the MMR jab is different to most families, and it goes a little something like this:

• George. Born 1996. Received the MMR jab. Not autistic.

• Robyn. Born 1998. Received the MMR jab. Severely autistic.

• Liberty. Born 2000. Did not receive MMR jab. Severely autistic.

If I was a scientist, I could probably draw conclusions from this to support a theory, mainly because scientists can always find evidence to support a theory if you pay them enough. Anybody else will declare that these facts tell us exactly nothing about the situation. We didn’t let Libby have the jab because the hysteria about the MMR was at its height and we already had one autistic kid. I think most people could understand our reticence. Most people doesn’t include our family doctor at the time, who made my wife feel stupid for being concerned about a widely reported story that had direct relevance to our family, and told us we should get Liberty jabbed straight away. I think part of the reason we didn’t was just to spite the doctor. Thank goodness he retired soon after.

Our dealings with doctors have not all been negative, however. We have encountered and been treated by some top guys and gals from the medical profession over the years. Our dentist, for example, is terrific with the girls. She’s a bit rubbish at putting in fillings, but her excellent ‘bedside manner’ with our children means we’d never change our dentist. In recent years, Robyn has become very compliant and co-operative in these types of situations. She enjoys having a ride up and down on the dentist chair, and seems to get a kick out of donning the health & safety shades they insist you wear these days. We’ve never been daring enough to actually give her any proper treatment, so we were quite happy for a couple of her milk teeth to go a bit manky, but now that she is happy (well, willing at least) to have her teeth brushed at home and checked by the dentist, her adult teeth are in much better shape.

Libby quite enjoys a trip to the dentist, as long as you don’t try to put her in the chair to have her teeth checked. She likes running around the place, putting on the glasses, blowing up the rubber gloves, swigging the mouthwash, playing with the dentist’s drill, pinching a few stickers and otherwise playing merry hell, but she’s not so keen on all that teeth prodding that these dentist types seem to go in for. We’ve always been slightly disappointed with this because, as you may know, the dentist is a crucial setting in top Disney/Pixar movie Finding Nemo. In fact, there are several scenes in the film that Libby likes to act out, and she is obsessed with anyone she meets who wears braces on their teeth, insisting on constantly looking in their mouth and calling them ‘Darla’ (a dentally challenged character who we meet in the film), but she’s not digging the entire proper dentist experience, per se.

However, last time at the dentists there was a breakthrough. And in typical Libby/Robyn style, it wasn’t a minor one. Libby went from refusing to go anywhere near the dentist chair, to a perfect full dental check, including a bit of a polish on her teeth. Do not think we’ve cracked it; it’s quite likely she’ll refuse to play ball next time.

Robyn has always had problems with her ears and has had to have grommets and exploratory surgery on a few occasions. Her inability to communicate means that she has to be put to sleep to have tests done to determine her hearing capability; if she can’t tell us when she is hurt or what she wants for dinner, she’s hardly going to be able to tell us exactly which sounds she can hear. The whole process of putting Robyn to sleep and waking her up for these minor operations can be difficult and stressful, so with her last operation occurring during the summer holiday, Karen asked me to take Robyn on this occasion. It’s not just a difficult and stressful situation for Robyn. Karen finds the whole procedure very upsetting.

When you work and your wife is a stay-at-home mum, you quite often miss out on lots of the day-to-day responsibilities of being a parent. So I quite enjoyed the opportunity to step up and be a ‘proper’ dad on a big occasion like this. It wasn’t an overnight stay, just an hour or two before for some tests, the operation, wake up, make sure she’s all OK and then go home.

We got to the hospital and said goodbye to Karen. Then I got Robyn into her pyjamas and dealt with the tests whilst Robyn watched her (my) iPad. The iPad had only just come out and was still quite a novelty for everyone who saw it, but it was a real godsend in the hospital as Robyn had a good sized extremely portable screen to watch her movies on wherever we took her, which helped keep her calm. When we went down to the operating theatre (she loved the ride down on the bed!) I sat on the bed and held her in my arms whilst we tried to get the anesthetising mask onto her face to get her to sleep. As we were sitting there, I chatted to the doctor about Robyn:

Doctor: So at what age did she get her diagnosis of autism?

Me: We knew there was a problem quite early on, but she was three when we got an initial diagnosis.

Doctor: And what sort of problems do you usually have with her ears?

Me: They’re very waxy and runny and she quite often gets earache which then…

Doctor: Oooh, is that an iPad?

Me: Er, yeah, yeah it is.

Doctor: Are they as good as people are saying?

Me: Yeah, er, it’s great.

Doctor: The screen resolution’s amazing isn’t it?

Me: Yeah, er, listen Doc, we’re about to cut my daughters head open, the iPad is awesome, absolutely, but can we not, you know, focus on the job in hand for a minute.

OK, I didn’t actually say that last bit, but I did think it. And as I spoke words of reassurance to Robyn, we managed to get the mask onto her face for sufficient time to get her to sleep. Once she was gone I had that unexplainably heartbreaking moment of leaving your child in theatre, unconscious and helpless. You know everything will be fine, but what can you do? You’re a dad. It’s your job to worry about your kids. I kissed her sleeping face and left her in the hands of her capable but slightly distracted doctor. I took the iPad with me, otherwise the doctor wouldn’t have got anything done. Besides, I needed it to read that day’s edition of The Times while I was waiting.

Robyn really didn’t enjoy waking up from the anesthetic. I think most people feel groggy and miserable when waking up after an operation, but what you always have to take into account with Robyn is that she doesn’t know what’s going on. She has no understanding of what’s just happened, why she feels off colour, and frankly, why the hell you’ve just woken her up when she was having a perfectly good sleep. It took a long time to calm her down. I tried all kinds of things: the iPad, rides in a wheelchair, going for a walk with her on my shoulders, Pepsi… nothing was stopping her from crying. But the nurses wanted to see she had calmed down and preferably had something to eat before they allowed us go home.

After more than an hour of Robyn’s constant tears, I had an idea. Hand in hand, we went for a walk down to the shop in the hospital to see if there was anything I could tempt her with. Thankfully, they had a little ice cream freezer that stocked Magnums (a chocolate covered ice cream). I managed to stop her from eating it until we got back to the ward so the nurses could watch her crack the chocolate, peel it off the Magnum, scoff it, and then chuck the ice cream in the bin. Well, if they didn’t know she was autistic before…

Yes, she is beautiful. The link to this blog? Why, that's the ear they operated on, of course...

*Not about autism* 13 Reasons Why I Am On Strike

First and foremost, this not my usual blog.  This is very much a one-off.  I am a teacher in the UK and I am on strike and I wanted to declare my reasons in a public forum, and this is the best one I have.  Do not worry ‘My Daughters Are Trying To Kill Me…’ fans (ahem), the usual tomfoolery will appear this weekend as usual.  Forgive me this indulgence.  If you have no interest in this, by all means go back to what you were doing and come back when I’m writing something more uplifting!

13 Reasons Why I Am On Strike

Some basic facts first:

• I am 40 years-old.
• I am at the top of the ordinary teacher’s pay scale and I have 1 responsibility ‘point’ for being the Head of Media (I love that title, it’s like I run the BBC or something.)
• I have been teaching for 12 years.

1)   I presently pay £209.55 a month into the teachers’ pension fund.  The government propose I should now pay more than £300.  Then they try to tell the country it’s a ‘3% increase’.  I’m no maths teacher, but I’m pretty sure that’s more like 50%.  Plus I pay £278 National Insurance, which is supposed to go towards things like pensions (we all know it doesn’t, but that’s the government’s fault not mine).

2)   Instead of retiring at 60 the government say I will now retire at 67.  That’s  another 7 years of my life gone and an extra £25,000 into the pension pot.  Nice. (25 grand is at current rates.  If our wages ever increase, this will obviously increase).

3)   If I want to retire early, my pension will be reduced by 7-12% a year.  So if I retired at around 58 I could, in theory, get no pension whatsoever, despite paying £108,000 in pension contributions over my so-called ‘career’.

4)   Following all of these extra contributions, were I to survive into my dotage and live for 25 years after retiring at 67 (and whilst this may not happen, we’re constantly being told that the pension problem is caused by the fact that we’re inconveniently refusing to drop dead at the age of 66), I would get £155,150 LESS in pension over that time.

5)   That’s right, gang.  £25,000 and 7 years extra in, 150 grand less out.  What a deal!

6)   But, I hear the doubters say, it has to be this way!  There simply isn’t the money in the pension pot to pay out anymore!  Actually, the National Audit Office recently assessed the teacher’s pension fund and it’s absolutely fine.  There is no shortfall. It’s one of those lines that’s trotted out so often by governments and the media that no one even questions it anymore.  But as far as teachers are concerned, it isn’t true.  They should have this as a question on QI.

7)   The teachers have an agreement with the government made in 2006 that if there threatens to be a shortfall, teachers will pay more contributions to make sure there isn’t.  No-one is asking private sector workers to top up our pensions. The government is required by law to take a valuation of the Teachers’ Pension Scheme before they make any changes.  They haven’t.  The government is using the economic downturn as an excuse to force through changes to pensions to raise extra cash.

8)   But, the negotiations are still going on, why strike before they’re over? Well, government minister Danny Alexander has already told us the government has no plans to change anything in negotiations.  They also said they would announce their final position in early July, just when teachers are going on holiday.  Then in September it takes months to organize a ballot and give legal notice about any impending strike.  So, not being sneaky at all with that, then.  Well, they are politicians.

9)   Some parents are complaining that they have to take a day off work because of the strike.  Well, we’re teachers, not child minders.  If we were child minders we’d get child minder rates.  Where I teach that’s about £33 per child per day. Multiply that by a class of, let’s say, 25, times by 200 working days a year and we’d be getting £165,000 a year.  None of that holiday pay nonsense, either! Hell, if they paid us kids babysitting rates of £2 an hour we’d all be pulling down 65K a year.  I also have three kids who are at home today and I am losing £108 for striking as we obviously don’t get paid for today.  I appreciate that this is my choice, but there are sacrifices for us as well.

10)  I am also frequently hearing something along the lines of ‘private sector pensions aren’t very good, so welcome to the real world, teachers’.  Why have private sector workers accepted that?  Why give teachers a hard time because they’re refusing to be shafted by their employers?  If other people want to roll over and accept poor pay and conditions, that’s their choice.  Don’t blame teachers for standing up for themselves.

11)  Teaching has always been a case of deferred gratification.  People become teachers knowing that they are better qualified than some private sector workers who earn more than they do.  But they always knew that the holidays were good and you got a decent pension.  To take that away during a teacher’s career is not only unfair to teachers who won’t be getting what they were promised at the start of their careers, it threatens to weaken the whole educational system as new graduates turn their back on teaching.  Who’d be a teacher if they don’t even get a good pension anymore?

12)  Others have said that striking isn’t very effective and should only be a last resort.  I have a tendency to agree with these points, but what other options are there?  The government wish to take action you disagree with, the unions try to negotiate, the government don’t budge; where do you go next?  What other action can you take?

13)  Teachers, like all public sector workers, are currently on a pay freeze for several years.  We are all aware of how the cost of living is rocketing.  A pay freeze in a time of inflation is tantamount to a pay cut.  This isn’t what we’re striking over, and that’s my point.  We’re not the kind of people who shout ‘All out!’ because someone’s changed the brand of lavvy paper in the school bogs.  We can accept reasonable change and know that this is a time of austerity for everyone.  But these pension changes go too far and are unnecessary.  I have never been on strike before, but I feel strongly about this.  I am on strike today and I will strike again if necessary.  I don’t really see that we have any choice.

Me in my classroom. I wasn't there today.

‘With A Little Help From My Friends’

I am sat in the kids’ playroom in our dear friends Kate & Spike’s house. Regular readers will remember Kate & Spike from such blog posts as Disneyland Paris and Chocolate Girl. I have not been able to find sufficient quiet time to write this weekend, but strangely, given that we are here for Kate & Spike’s new baby Esme’s blessing and the house is full of people, Robyn and I have found a quiet space for her to play with her (my) iPad, and for me to write this week’s installment. So, as I sit here, I am reminded of the many fun things that have happened in this house over the years with our girls.

We are here for Esme’s blessing which took place at 10am at the church, which is very close to Kate & Spike’s home. There are three separate sessions of our church services, which take three hours in total, finishing at 1pm. We made it to 10.20am before the girls behaviour meant we had to leave, which, all things considered, was quite good for Liberty. Karen and I were not very reverent during the opening prayer. Sitting on the back row, we had supplied the girls with their usual electronic entertainment and headphones, and also plied them with sweets. Up to now, the burble of low volume conversation and prelude music had disguised any noises they might have made. But as the congregation fell deathly silent for the prayer, there was the unmistakable and suddenly loud sound of heavily slurped sweets and the secondhand hiss of Disney’s Hercules leaking through headphones. Our response? Barely stifled laughter. You do become somewhat immune to embarrassment in these situations after a while.

Anyway, back to the house I am sitting in. There are lots of little incidents that have happened here, as we used to stay here often before we scaled back our visits to people’s houses on account of the many disasters that were experienced. I just asked Kate if she could remember any stories from our visits to their place. I remembered some of the same ones as she did, but there were others I’d forgotten that she remembered. Like Robyn’s unique take on showering one Sunday morning. Robyn enjoys her shower time and often lies down in the bath to just let the water splash over her. It would seem that the only thing wrong with this situation for Robyn is that the hard plastic bath isn’t the most comfortable of places for a lie down. But Kate was still surprised when she went back into the bathroom to find that Robyn had got out of the shower, dragged herself a quilt from one of the beds, wrapped herself in it and climbed back into the shower. Much more comfortable I’m sure you’ll agree. There are these social conventions that we all follow, that Robyn and Libby don’t give two hoots for. Wrapping yourself in a quilt so your lie down in the shower can be more comfortable? We would see that as a bit self-indulgent. It’s creating a huge amount of work and effort for someone to dry that later; but why would Robyn care about that?

Another social convention that Robyn didn’t care too much for in her younger years was that stuffy nonsense about wearing clothes in public. But given that she was only little, and we were at the house of good friends, this shouldn’t be the such a big deal. Then one day there was one of those knocks at the door that we get from time to time, even when we’re at someone else’s house. It was a neighbour of Kate & Spike’s, wondering if we knew that the little girl who was visiting here had escaped and was now running at speed away from the house. Stark naked. The escaping part is the dangerous and worrying bit. The naked bit is just the additional dose of humiliation you get as you chase down the road after her, passing the good people of Runcorn, sitting in their front gardens on a lovely day wondering who the rather strange, squealing, naked kid is running past their house.

Some stories are funny at the time, some become funny afterwards when you’re retelling the tale. Some are never funny, even years later. I don’t want to end on a downer, so I’ll tell one of those now and end on something more light-hearted. We were getting ready to leave Kate & Spike’s one Sunday evening having stayed for the weekend. We gathered bags and coats and were about to start saying our farewells, with all of us in the lounge or the conservatory that is adjacent to the lounge. Often these kinds of incidents come about because you’ve had to go into another room, or you’ve been distracted for a minute or two. The troubling thing about this incident was that Robyn nearly died within a couple of feet of four adults. Robyn was walking around the low windowsill in the conservatory that went all the way around the room. This is the kind of thing that Robyn loves to do, walking on low walls and sills, getting to the end and walking back. As she was walking along the thin windowsill, she slipped. As she slipped she managed to hook her head in the loop of the cord that pulled the blinds up and down. I looked up to see that Robyn had totally fallen from the sill and was hanging in this ‘noose’, quickly turning deep purple. It was over in a few seconds, and she wasn’t badly injured, but the scar around her neck was a reminder for the next few months of what sometimes happens with Robyn’s athleticism, even when you’ve barely turned your back.

So, something a little lighter to finish? Spike works in the Audio Visual business and, as you would, has a very nice AV set up with an amp and speakers for the television in their lounge. And given that he gets his AV equipment at knockdown prices, you would imagine correctly that these speakers could really pack a punch. Our wives had gone out shopping and left us home with the kids, so Spike, George and I were chatting in the dining room, and Libby decided that while we were out of the living room she would put a DVD on. This in itself wasn’t a problem, but while putting it on she decided to press a few buttons and turn a few dials on the amp. One of the things she had done was to turn the powerful amp and speakers up to full volume. Then the DVD came on and, as luck would have it, she chose a DVD released by top film studio Metro Goldwyn Mayer. As always happens at the start of a film from this studio, the MGM lion roared, only this was now at house shaking volume turned all the way up to 11. I simultaneously thought I was having heart failure and that we were about to experience some sort of low scale 9/11 with a plane about to crash into the house. Frightening for a moment, but quickly quite funny.

The amazing thing is, after all of these and many other little incidents that have happened, Kate & Spike are still our dearest friends. They obviously need to get out a bit more and meet people. There’s got to be lower maintenance friends than us knocking about, surely?

Our pre-Christmas dinner that we have each year with Kate & Spike. Libby & Robyn are in the room, but given that we weren't having curry for Christmas dinner, they found something better to do.

‘What A Fool Believes’

Sometimes in life you have to ask yourself the Big Questions.  You know, like:

• If there is a God, how come there is so much pain and suffering in the world?
• Is Climate Change a reality or an oft-peddled myth?
• Does anybody, really and truly, understand how the financial markets work (including everyone who makes their living from said markets)?
• Why do people continue to watch weather reports when the weathermen don’t even seem to know what the weather is like outside right now?
• Why are sandwiches tastier cut into triangles rather than squares?
• How did Philip Neville ever get to play for England once, never mind more than fifty times?

Oh yeah, and

• What is the purpose of life?  And how does that purpose relate to people with autism?

If you’ll allow me a philosophical moment, I believe that our lives are about learning to be more loving and less selfish; that we are here to learn how to put other people’s needs before our own.  I believe that we are here to learn and to experience things; good and bad, positive and negative.   Positive things bring us joy so we know what we are striving for, but negative experiences are where we really learn about the important things that make us stronger people.

To be honest, when it comes to negative experiences, I don’t have much time for people who frequently lament their lot in life because things haven’t turned out as they hoped.  I’m not saying that we don’t all have the right to have a moan; we’re all human and it’s good to get things off our chest once in a while. Neither am I saying that there aren’t people who have earned the right to be unhappy; there are people in the world living in dire circumstances of all kinds.  But one thing I am sure of is that I am not one of them.

As you may be aware, I am a high school teacher.  I remember an occasion, a few years ago now, where a teacher was absent and I had to cover her BTEC Child Care lesson (and people say that we don’t do enough academic subjects anymore…).  I don’t remember too many details, but the class was watching a documentary about the parents of a young child who had some illness or other.  He would be able to have an operation to cure him when he was older, but for now they had to give him injections each evening.  What I remember quite clearly was the attitude of the parents.  The mother was in tears saying, ‘I just can’t wait until this nightmare is over.  I can’t bear hurting my son every night with needles.’  The father said, ‘The main question we ask ourselves is, ‘Why us?’’

I admit, I was not terribly sympathetic.  Yes, your life may not be perfect, but you’ve been blessed with a child who brings joy into your life, how about focusing on that?  And besides, ‘Why me?’ is a rubbish question on just about every level.  Bad things happen to most of us at some point or other.  Sadly, there are those people that live in awful circumstances all of the time but, for most of us, life is a series of peaks and troughs, swings and roundabouts.   Life isn’t one long fairy tale where everything is great, not for anyone. Yes, my life is made more testing by our daughters’ condition but, on the other hand, I am 40 years old and I have never experienced grief of any kind.  Except when George’s guinea pig died.  That was pretty traumatic.

To bring me back to my original point then, I believe that my varied life experiences give me the opportunity to learn; hopefully to learn to be a better person.  So, if this is the case, what are my daughters here for?  Clearly, their limited capacity to learn means we cannot expect them to learn moral or educational lessons in the same way that we can.  The girls do learn things here and there, of course, but improved dexterity on an iPad, or knowing every word to Disney’s Tangled isn’t the sort of thing I had in mind when discussing the meaning of life.  When it comes to matters that can be judged to be morally correct or not, we cannot expect any kind of real learning for Robyn and Liberty.  Their autism means they can never learn to really love and care for others in the same way that we would hopefully expect from ourselves.  If we were to judge people with autism by our own standards then we would say they were hugely selfish, especially those whose autism is severe, like our girls.  Let me be clear; they are not selfish.  They just do not have any comprehension of the needs of other people.  My daughters only really understand attending to their own needs; that’s the nature of the beast(s).

So, to ask the question again, what are Robyn and Liberty here for?  What is the purpose of their life?  To me it’s quite simple. I am a student; I am here to learn.  Robyn and Liberty are educators; they are here to teach.  I wrote recently about my son, George, and I honestly believe that his life is richer for being raised in a house with autism at its very heart.

And me?  I have no doubt that taking care of my daughters has helped me to be a better man.  I am sure I am twice the man I would ever have been without them.   And what does it mean to be a man?  I’m not entirely sure, but I know I am never more manly than I when I am cooking, cleaning, hairbrushing, tickling, singing, snuggling, toileting, soothing, dancing, fixing, dressing, washing and generally caring for my girls.  I believe their purpose is to make me a better person and I never doubt how well they achieve it.  I am disappointed on occasion when I see people denying themselves the opportunity to care for the girls.  Let there be no doubt, anyone who declines to spend time with my daughters is considerably poorer for doing so.  They are little rays of sunshine, true enough, but spend a little time with them and they will also make you a better person.

I believe I know my place in the world, and just as importantly, I believe I know Robyn and Liberty’s place in the world, too.

Seriously, how can anyone think my life wouldn't be richer without this pair?