A day with autism

I have breakfast early with Gordon before he goes to work. As usual, Thomas is the first of the children to rise, but then, he's always first to fall asleep too. After I've opened their curtains and hassled them both a bit, Lady and Duncan manage to drag themselves out of bed at 8.30 or so. They have breakfast, then Thomas goes to play The Simpsons Wii game, which he desperately wants to finish; he's going well too. Lady heads upstairs to get dressed and tidy her room, then she has to feed her guinea pigs. Duncan settles in front of the PC to watch YouTube films (mostly Noddy) and to play Roller Coaster Tycoon. He's getting very good at it now, and designs all his own coasters rather than using the pre-set selections. While they're occupied, I tidy up and do a few chores. For the rest of the morning, the boys each do some reading with me, Lady works on some maths then does some work on the BBC schools website. In between, I check my mail, read a few blogs and the paper, and sort the laundry. I don't remember that there were any significant 'behaviours' (don't you just hate that word?) from any of us.

We have a quick snack before leaving the house just after 12 to go to the swimming pool, like every other Tuesday. I always try to park the car so there is no need to cross the car park to get to the leisure centre. Often when we arrive, the children in the school beside the car park, are in the playground on their lunch time break. Perhaps because of the noise they're making, Duncan may ask me to carry him. A few times he has been so distressed at this little transition, that I have had to carry him for a bit, but usually I can make a game out of racing to the door, and persuade him to walk or run.

Once inside the leisure centre, I pay for our swim, and the children look at the trophy cabinet, or if you're Duncan, at the jar of jelly beans beside the reception desk. Often, Duncan makes a lot of noise here, enjoying, perhaps, the echo effects of the large, sparse room. They all wait until I have paid, and as soon as I say lets go, they race down the stairs, full of enthusiasm.

Duncan wants to take the stairs going the other way to the fitness centre. He is upset and refusing to go the right way. I ask him if he wants to swim, and say that we need to get changed. He says 'no monsters' pointing to the changing rooms and I assure him that there are none. I playfully say that I scare the monsters away!
Another time, he was walking down these stairs, when he stopped beside a woman leaving, touched her carrier bag and, full of admiration, said it was a 'Disney bag.' She said no, and told him what shop it was from, and I said, 'it's a colourful bag, it's like a Disney bag.'

We always change in one of the 2 changing rooms for disabled users, allowing us to stay together in one room. In the pool, Duncan grabs a foam float, and walks up and down the shallow toddler pool, falling forward and drifting for a bit. He jumps in from the steps. He splashes and watches the patterns. He closes his eyes and jumps, laughs, shrieks and feels the water. He is loving it.

Thomas dons his orange goggles and swims with more determination than style, and Lady goes over water and under water, swimming, jumping and pirouetting. They mostly stay together, and I focus on watching Duncan, though he often sends me away if he wants more space.

Whenever there are other children around, I pay even more attention to what Duncan is doing. He is not usually interested in anyone else there, just myself and his siblings. He will walk right through a group of people if they're in his path. He doesn't bump or splash; he just carefully passes through. He doesn't have the same sense of personal distance that many have.

A boy, about 4 years old, is wearing Spider Man armbands. Duncan goes up and touches one. The boy's mum looks a bit annoyed. I am right beside Duncan, and say 'it's OK, he's wearing nice Spider Man armbands.' I'm not sure who I am talking to, the mum or Duncan. I try to smile at her but she avoids me.

When it's time to leave (because a school group comes in just after 1) Duncan takes my hand and we go to the changing room. Duncan shivers but will not take a shower. There's a shower in the disabled users' changing room, which is handy. I help Duncan get dressed while Lady and Thomas shower. On our way out, I return the locker key and the boys huddle round the jelly bean dispenser, fussing about who is going to turn the handle. The woman working on reception calls over to tell them they are very noisy. I am taken aback, and just look at her without saying anything. They get a few beans now, and I save some for when they're in the car.

Duncan decides to run to the car. I keep him in my sights. When he's getting close to the car park, I catch up with him and take his hand, fearful that he will run in front of a car. We all get safely into the car, everyone puts their own seat-belt on, and the remaining jelly beans are dispensed (after Thomas answers the sharing sum!)

As a treat, we stop off for some chips, and eat them in the car. Duncan prefers the thin, crispy ones. Then I am required to go to the other nearby town, where Duncan lost a home-made Noddy book the day before in the Tesco shop. He had been very distressed by this, and I'd promised we'd go back when it was open to look for it. I ask in the shop if it had happened to be found, but explained it was unlikely as it would look like litter to anyone else. (They weren't to know how much time and effort a little boy had put into those words and pictures.) The woman on the till, remembers us from the previous day, I wonder how?! But, as I expect, they don't have it and Duncan is upset. This leads to lots of scripting, of angry film characters. I've learnt that the worst thing I can do is to ask him not to shout. Instead, I engage with what he's saying. For example, if he's shouting about Cruella de Vil, I ask about her, and he changes tone to tell me that she is nasty and wants to catch the puppies.

I ask if he wants to visit the charity shop to look for a video, so we do. He chooses a few Disney films, and finds a Noddy book! How lucky was that! Thomas is very pleased to discover a Doctor Who 2006 album. Charity shops are great.

We go home then, and in the afternoon, I help Duncan to make a new Noddy book. He writes out the story as before;

Noddy's Toyland Adventures
Noddy and the warm scarf

Won day it was a chilet
One day it was chilly.

No longer

Jorafes!
Giraffes!

Stop stop Mr Plod.

I can understand his concern over the loss of his earlier manuscript!

Anyway, I think that's enough.

I wanted to write this out, as it was a typical day, involving time out and about. When Gordon asked me later how our day had been, I was able to tell him, as I usually do, that we'd had a great day and to tell him all the funny little things they'd said, and the adventures we'd had. This is what our lives are like. It's nice, most of the time, though we have our down times too.

So I get irritated when I read articles like, Living with autism - the harsh reality faced by one mother, in a local Irish newspaper. The mum interviewed has had unnecessary obstacles to deal with, due to inadequate state health and education facilities. That is shameful, and I would back their claim to much better services.

But, and there's always a but, why is it, that the needs of the autistic people who are no longer children, never seem to be mentioned? And why do these interviews with parents always focus on the negative?

His behaviour has become aggressive and inappropriate, he had become more withdrawn and the temper tantrums have escalated to the point where it’s proving almost impossible for his family to cope.

“I’ve never seen this behaviour in him before. He’s very aggressive... the temper tantrums leave him inconsolable... he hits me and behaves in a way that isn’t age appropriate. He wants to stay at home the whole time, it’s impossible to get him out of the house because of his rituals and routines,” said a devastated Ann.

As you can imagine, this places enormous strain on normal family life making many of the things we take for granted like shopping, family visits, holidays or simply leaving the house impossible for Ann and her family.

“It’s very hard to cope with and very embarrassing and stressful when it happens in public,” said Ann, agreeing that because he looks like a normal child, people can be very unforgiving.

It's not her son's fault that people are 'unforgiving' and the public need to be educated to tackle these disablist attitudes.

Keith Duffy, Ireland's own 'autism advocate' celebrity, is in the media again this week. He describes the day he realised his daughter was autistic; "Afterwards as I drove home I cried like I hadn't cried in years. That was the worst ever day of my life."

His wife joins in, "I felt utterly cheated and I was very angry," says Lisa Duffy. "I had this beautiful boy [son Jordan, 11] and then I had this beautiful girl and I felt that this cannot be happening to us."

That line reminded me of the 'attitude of entitlement' explored in this post by Club 166.

Mr Duffy's daughter, as he has told us before, had bucket loads of ABA treatment. I listened to the linked radio interview, and he says she was at an ABA school from 9 to 3.30 every day, when she was only two years old. She's now at a mainstream school, which they describe as a 'miracle'.

I am fed up with these descriptions, but they seem to be accepted, no...expected in discussions about autism. All these parents follow the script, and reveal, in 'emotional, honest and affecting detail', how awful their children are, or how hard they are to deal with. I'm no super hero, I'm an ordinary good enough mum, a bit lazy, but fascinated by these creatures temporarily in my care and enjoying their company enormously. I don't have any special qualities that make it easier for 'someone like me' (as I have, irritatingly, been told before) to cope with a non typical child. Basically, I decided to have children, so I just have to take what I get and make the best of it, and there is a lot of good to be had.