13 Mar 2008

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


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.


Anonymous said...

That was a busy day :). The mum at the swimming pool should have been more understanding I think.
Anyway, here is a bit of our day :D.
I can hear giggling when I wake up. The lads are awake and clearly conspiring :P. I get out of bed and Jacob, my baby (ok he's 2.5 but he's still my baby) hears me and starts shouting. I get dressed and go downstairs to change their nappies. Tom is playing with the megablocks. He looks at me.
"How old is E?" he asks me. I know what to do.
"How old is E?" I reply.
"E five" he announces.
"That's right," I tell him. "E is five years old."
"A how old is Tom?"
"You tell me" I reply on the offchance he doesn't want this routine. He starts getting upset.
"A how old a TOM?!"
"How old is Tom?" I ask.
"Tom a four!" he replies then starts laughing. He only learnt how to say how old he was a couple of weeks ago and he is very proud.
"Are you looking forward to school today?" I ask.
"Are you looking forward a 'chool today?" comes the answer.
"W bread!"
"W had bread for dinner yesterday, did he?" I ask.
"A Tom bread!" comes the reply.
We go downstairs and have breakfast. I get Tom dressed after breakfast as he gets a tad messy.
"Are you going to help me sort your school bag out Tom?" I ask.
"I TOM!!" he announces, enraged. Yes, he has recently learnt some self identity as well.
School bag is sorted and he then tells me:
"Climb a my back said a fox!" before hurtling onto my shoulders, tweaking my nose and falling back onto the couch.
The bus arrives and he gets on. He had got into the routine of saying "hello" to the driver and helper but he's forgotten it now. I prompt him to say hello and he says it very quietly. The bus leaves.
Later in the day it comes back, Tom's jumper indicating he's had some of his school dinner. We go to our front door and he looks at it.
"A 14!" he announces.
"I think he's pleased to be home. We go in and I ask him if he had a nice day.
!A EATING!" he replies, dragging me to the kitchen. He has his priorities worked out. I look through his book and discover he enjoyed putting lots of glue onto the band he decorated and that he counted some boxes. A good day then :).

VAB said...

What a nice read that was. I really know what you mean about the press. The thing is, they might look at many different families, but the only ones that are going to make it into the actual article are the ones that are both sensational and stick to the script. Not many people will pay good money to learn that their neighbors are having an unremarkable time of it.

Fortunately, there are people such as yourself who are willing to chronicle life with autism as you find it in blogs. Hopefully, the truth will leak out.

Sharon McDaid said...

I loved reading about your boys Bullet. Tom is such a star. I reckon that often, the bad times parents face, are caused much more by difficulties with schools and health services, rather than with the children themselves. I know that we bypass a lot of that hassle by home-educating. But like I said, I do like to take the easy option, especially when it's also (for us) by far the best option.

Thanks VAB. Yes, I suppose the newspapers seek out controversy to create a more sensational story. It's dangerous though, and creates a lot of ignorance and fear of autistic people, and anyone who is different, and that in turn leads to prejudice and sometimes hate crimes.

All the recent incidences of parents killing their autistic children might not have happened if those parents had not been fed a diet of scare stories and devastation rhetoric in the papers so often.

Anonymous said...

Hey there, just a small point. It seems you have a good relationship with autism in your household! I take it you are in a higher income / savings bracket? I do not mean to be rude but the time I spent investigating ASD there was plenty of bad situations, usually in Lower income households, and single parent families, so I'm asking for interests sake. shame really cos caring for a child with autism is a full time thing - like any child. I also came across some ASD people who were violent self harmers, they were a job to interact with! A mate of mine had to quit his job as a carer in ASD school cos he was attacked so much. I'm just saying be grateful you seem to be top of the ASD deck! Some good old righteous Daily Mail indignation here too!! I think thats first time ive seen anyone take offence at research LOL. Nice to see a bit o fire. Congrats on the award!
- The sargent

Anonymous said...

Well, I can't speak for Sharon, but personally whilst we are not on the poverty line DH and I do not have a lot of money. We live in a tiny five roomed Edwardian Terrace, can't afford to buy a property, have to budget carefully each month and it's been a while since we've been able to buy anything other than the essentials. On the plus side we save up for everything we need so have no debts. And we are very fortunate to be entitled to some tax credits, disability living allowance and the statutory child benefit. I am also good at thinking of ways of using up things (I can get five meals out of a cooked chicken for example) which also helps.

Ed said...

Hi Sharon,
Looks like yet another person has recognised how fortunate Duncan is to have parents like you and Gordon who view their autistic son's future with optimism.

Unfortunately, they seem to once again (temporarily at least) to be unable to access the benefits of reading about such an attitude by descibing that attitude all too conveiniently as the result of resources that are outside their spectrum of access.

Five meals out of 1 chicken is very frugal of you. Some people in the southern U.S. where I live would never think of looking for ways to cut cost when it comes to fixing chicken.

As some southerners might say, "Anyone who can get 5 meals out of 1 chicken is likely to miss 4 opertunities to FRY 1 good bird!"

Sharon McDaid said...

Hello The sargent.
People with very low incomes can have a harder life in many ways. If there are severe financial worries, it will impact on all family members, whether they are autistic or not. Also, in troubled homes, there may be problems with raising any children.

The families depicted in these articles are not in financial dire straits. Neither am I. They usually are, like me, fairly secure.

It is often implied that raising an autistic child is hugely more expensive. It is more expensive in some ways, in that you might need to use nappies for much longer than usual, or run the washing machine more, or pay more for child care or pay for extra locks on doors and windows; different things to make life go slightly easier. My son is eligible for disability living allowance which helps with these sorts of things. It's important that this money is provided by the state for people who need it.
This is not the same as paying out for expensive and unnecessary 'therapies.'

The children you mention, (aggressive or self harming) do you know what was done to figure out why they were doing these things? They might have been under tremendous stress. I know that the school situation for many autistic children is awful, and the children suffer from an inadequate and underfunded system. That will make life hard for the teachers too. I would support efforts to improve these schools, or to make it more widely known that home-education is a legal and effective option.

So I'm displaying some 'Daily Mail' indignation? Right, you go ahead and label it as such if you want. Yes, I am indignant. The message of anger and fear harms parents and autistic people. Parents reading these negative stories are more likely to fail to bond with their child and are more vulnerable to fall for quackery. These messages dehumanise autistics.

Sharon McDaid said...

Bullet, thanks for showing that the attitude I'm talking about, costs nothing.

Hi Ed, I always smile when I see there's a comment from you.
It's not all about income is it? The resources needed here are not financial, just love and understanding.
Thanks too for the insight into the pleasures of southern cuisine!

Anonymous said...

I recently decided to stop my son's ABA treatments as he was reacting really negatively to the tutors, and in the 3 weeks since I stopped, he's been a dream (in comparison). My husband just asked me if I get enough of a break from the kids (I also have a little girl) since he's not around a lot, and I had to think about it, but I actually love spending the day with them. I don't think of my time away as a break. Its just time spent with friends or doing other things. Not a break. Because I am really loving my time with these two, you know? And I can generally figure out a way to calm down my little guy if he's in a mood (I hate the word behaviour too!).

Sharon McDaid said...

Hi Bombaygirl and thanks for your comment. It sounds like you made the right decision for your son. It makes sense that he will be more settled when he is happier and well understood. I too like to do some of the others things I enjoy, that don't involve being with my children, but it's just all part of living.

Bree said...

Hey, Ive just been reading your blog for ages in bed. I love reading about your daily life. With or without autism, I admire the way you parent. All our children are a blessing. There are days I wonder what on earth Im doing with my lot, and other days where I sit in awe watching thier little personalities. My youngest has some 'behavioural problems' and I often get looks from strangers who dont know anything about us. It makes me so cross. How dare they judge my child. Luke doesnt have autism, but I think he may have something called 'ODD'. I discovered it on the net recently and it describes him perfectly. Although Im not sure if its a real thing or just a made up thing for doctors to spout about. Im no expert. All I know is that luke has his own ways of thinking about things and understanding, and if he can not understand how people behave , or what people ask him to do, he gets angry and cross, and cant deal with it. It appears to passers by that he is disobedient, but I know differently. I love watching his complex little personality developing. Anyway, what on earth am I waffling on about? I just wanted to say 'Hi, Ive been reading your blog!' LOL.