Saturdays

I do like Saturday afternoons. Lady and Gordon always go to the gym then to visit his mum and it's a really important routine for them all. It's just me and the boys at home. Thomas helped me to bake some cakes with icing and sprinkles. As I was stirring the icing, he was arranging the cakes and counting them, when he told me 'I know what 4 and 4 make, 4 and 4 makes 8!'

Now he's playing in garden and Duncan has taken a break from drawing and writing (his main activities these days) to play the Home on the Range DVD on their computer. I've just done my traditional Saturday mega-clean of the kitchen while listening to the erudite and eloquent Mark Kermode film review show.

It was our wedding anniversary yesterday. 11 years of wedded bliss...
I'd rhapsodise the fella but he wouldn't like that so I'll just say that I'm very glad we met all those years ago when I was but a wee cuddy fresh from the Tyrone countryside...sort of.

Anyway, he came home from work a bit early and we took the children to the Transport Museum. Not surprisingly, we have annual membership for this place. This time we went to the Flight experience bit and all had a go in the flight simulator. I was a bit concerned about how Duncan would enjoy it, especially as he has a fear of going on an aeroplane. This didn't look anything like a plane of course, and I told him it was like a computer game. We got in and saw the big screen. I told him we'd see a film all about aeroplanes and flying and the seats would move and shake a little. He was a bit uncertain but didn't ask to leave or seem frightened so we gave the lady operating it the nod to close the door. We all enjoyed the experience and will probably have to go every visit now.

We called in at the supermarket for a bit afterwards for a few things. As we were waiting to pay, Duncan started to sing the opening bit from Gwen Stefani's Sweet Escape 'woo-hoo, yee-hoo!' We were a bit concerned that he was too loud but he was happy so we relaxed and let him be. We'd had a nice day despite a few episodes of the usual squabbles and tantrums and a curly haired boy running around like a rocket. That's not what I remember though.

My mother-in-law came over at night to babysit and Gordon and me headed into Belfast. We had a lovely meal, and a really grand night out.
autism northern ireland

Our Thrilling Weekend

I'm just being ironic...but it's my blog, I'll be ironic if I want to.
I'll also post a dull-to-read catch-up of the past few days if I want to.

So Friday, it was a cold crisp sort of day. I took the children to a big Tesco supermarket. I had to buy markers for the budding artist and the big sets sold by Tesco are the best we've had. I took a trolley, and feeling a bit like I was about to invite a bull into the Belleek show room, went into the shop. Thomas rode in the trolley and I'd asked Duncan to hold on and help me push. He dashed off right away to look at some comics, but came back when I called him. I'd told him we were buying markers and doughnuts with pink icing (the best kind, apparently) so he knew he was about to benefit. We passed a display of Thomas trains and again he went to have a closer look. We examined a few engines, then I asked him to put them back and...he did! No problems so far. Next we picked up the doughnuts then Duncan and Lady helped me put a few other items in the trolley. Duncan was singing as we went, 'I want you back' by Take That. Lady told me proudly that some teenage girls were smiling at him; she reckons they thought he was cute! We didn't buy much, I didn't want to temp fate by going beyond Duncan's comfort limit. But I was so pleased with how well he managed to deal with all that temptation, to choose to stay beside me and to even help.

Afterwards, we went to a lovely little playground, overlooking Belfast Lough and the children had fun and I played chase to keep warm.

On Saturday I took the boys to another playground for a run around, while Gordon and Lady went to the sports centre for their Saturday gym/Jujitsu sessions. I called into a shop with Thomas and Duncan and this time had much more difficulty controlling Duncan. I wondered afterwards if it was having the trolley that he could push and hold on to, that had helped him to stay calm the previous day.

Well, we called up to see Gordon's Mum for a while. She looked after the children while Gordon and I escaped for a quick, grown-up lunch at a nice wee cafe. I do like it when we have a little break like that.

My brother called to see us on Sunday. The second he came in the door, Duncan ran up to him saying 'chase me!' Obviously that's what big uncles are for. It was a lovely sunny day and the children played in the garden for ages. The children from next door care over and Lady and her friend disappeared upstairs. I heard them giggling in the bathroom and my special trouble sniffing sensors were alerted. They had the guinea pigs and our digital camera, and Lady had taken loads of photos of their exploits. She had decided she wanted to send in a photo to one of those little-girl comics, since they're always publishing photos of cute children with their pets. There wasn't much point in her denying any wrong doing, since there was a load of evidence of what they'd been up to on the camera!

Also on Sunday, my sister abseiled down a 40m high building in London, to raise money for the Macmillan cancer charity. She's a Macmillan nurse herself. She was terrified, it was windy and lonely (she told me after) but she did it. I'm so proud of her. Go C, ye big gir-ul ye!!!

autism northern ireland

St Patrick's Day- Our Way

Saturday was St Patrick's Day so after Lady did some traditional Jujitsu (ho ho) we headed off to Downpatrick. See that's where the great Welshman and saviour of the pagan Irish, is supposed to be buried. The town was hosting a parade too. But did we go and pay our respects at the grave of the renowned saint, did we don green cowboy hats (about as traditional as Jujitsu) and watch the parade...well no, we went to the Railway museum and took a short but pleasant ride on a steam train. In short, we had a happy, yet autistic friendly, St Patrick's Day.

Autistic Artistic Development

Duncan keeps drawing his own pictures. He creates loads of them every day, big and small, pictures of trains and cars, film and game characters and logos. He often writes little notes on the pages too, like his picture of a snake labeled 'Vodermot sayk', which wasn't a bad attempt at 'Voldermot snake'. (It's a Harry Potter thing, for those not in the know!) It's all a perfect example of child directed learning, or personalised education or whatever jargon term takes your fancy.

I have to admit, I was astonished at the two pictures he produced, entirely indepentently, and which I have included below. He completed and cut out the Pinocchio picture and brought it to me, so I would put a string on it, making it into a puppet. He then started dance it about and sing 'You've Got a Friend in Me' (from Toy Story). I love the detail of his picture; the bow tie and the little black waistcoat are both included.


The following day he drew a picture of Harry Potter. Like the Pinocchio picture, this was done from memory, and shows the character from behind which is how he's usually seen in the HP games. Notice the nice little pink ears peeking out!



I'm going to have to buy a job lot of marker pens to keep up with him. He still hasn't got the hang of putting the lid back on the pen when he's finished with it and then gets frustrated when the particular colour he wants has dried out. I find it amazing though, how this has just suddenly started, when for ages he really resisted picking up a pen or pencil at all. In the 2 or 3 weeks since he started drawing and writing, he has made lots of progress. Now I'm finding little pictures all over the house.
home-education autism Northern Ireland

Classic Thomas Moments

I've just got to record this.
Thomas took some paper and a pen and started to write and after a minute he asked me, 'What does a 'scuh' look like?' He'd written the letter 'B' on his page, and wanted to write 'biscetti', (spaghetti; all 3 of my children called it biscetti for a while). He then decided that 'pasta' was easier to write, so after a bit help with 'stuh', he put that down and handed it to me requesting that I cook some.

Another classic Thomas moment from a last weekend; it was Mother's Day and Gordon's mum came round for lunch. Thomas wanted something, can't remember what it was, but he obviously felt he wasn't being taken at all seriously enough. So he left the room, telling us all that he was going to leave home and go to live in my friend D's house. I asked how he intended to get there (since they live about 20 miles away) and he announced that he would just get a taxi. So there.

Now I know that D is very fond of Thomas, and she is one child down right now, (since one of her boys is on an exchange visit in France) but I'm not sure if she up to adopting another 4 nearly 5 year old!

Drawing Dementors- whatever next?

Duncan has been playing the Harry Potter computer games quite often recently. He's figured out all the tricks and techniques and has managed to work his way through most of the games. It's impressive; I had difficulty with them when I had a go, though admittedly I've never been much good at that sort of thing. It's opened up a whole new set of characters and symbols for Duncan. I've had to draw pictures of Harry Potter, a dementor, a few broomsticks and yesterday Lady adapted a book into a Monster Book of Magic. He's also drawn 'Voldermort's snake' and lots of the spell symbols himself, and the 3 children adapted a square of leftover carpet into a Spongify Tile.

I made some biscuits with the boys yesterday. Duncan pulled a chair up to the cooker to sit and wait until they were cooked. However, as he always does these days, he kept opening the oven door to have a look. He's also started recently, to reduce the time set on the oven timer, since he knows the rule that when the beeper goes, the food is ready. I made a little comic strip story about it all:

1. Sometimes Mummy makes cakes and biscuits.
2. Duncan likes to eat cakes and biscuits.
3. Mummy puts the food into the oven.
4. Duncan wants to open the oven. He wants to eat the food. But the food is not ready yet.
5. Duncan must wait. When Mummy says the food is ready, then Duncan can eat.

He sat with me and read the whole thing. He needed help with some of the new words, but figured many of them out phonetically. He coloured in the pictures, then sat reading it until it was time to eat.

He obviously gains from having things written down. He got angry when I told him I would finish my tea and toast before helping him on the computer, but when I wrote it down and helped him to read it, he was more settled. His reading is getting better, and most of the reading we do together is these little notes and stories I write on the spot.

A few days ago, Thomas wanted to read the Magic Key reading scheme books. So he took out the easiest book and read it from memory, looking away from the page to show-off that he could read it, without even looking. Hmmm. Then Duncan picked it up and read it properly, touching each word and figuring it out. It's very encouraging to see.

Oh and one last thing I want to record. Last night after dinner, we were all sitting watching this celebrity singing contest thing on TV. A woman was singing (badly) a Beatles song, and Duncan, who was cuddled in beside me, started swaying his arm in the air from side to side. He was copying the TV audience, and he kept it up for the whole song. It was very cute. I just love how he feels like doing these things and does them.

Right, my brother should be arriving soon, on his way to London to see our sister. I think we'll make him some biscuits.
autism home-education Northern Ireland

Adiboo Adoration

Duncan is fond of a computer game character called Adiboo. He regularly looks it up on Google, and I have drawn it on request, more than 100 times. Our CD Rom has gone missing, but we still have the case, and Duncan will often carry it round in his little Brum bag with a few other select treasures.

A few days ago, he wanted to make an Adiboo book, so he cut some paper for the book, and I drew Adiboo. I asked him if he wanted to colour it in himself, and he did. I left him to it, and the next day I found the tiny book again. He had coloured it in and written the word 'Adiboo' on the cover.
Inside, he'd drawn 2 more Adiboo pictures, but also drawn the weird brown monster character from the game and the yellow, one-legged, bouncing dog thing. He'd written 'Adiboo' again, and 'Big Thunder Mountain' sideways, in yellow. The letters are a bit disordered since he ran out of space.

On Friday, he designed and produced an Adiboo costume. He wore his little cap inside out (to make the visor bit stick up). He coloured a page in light red (achieved by colouring in yellow, then going over it with pink...got to get it just so!) Then he cut that out and stuck it to his top. He covered a few pages in yellow and stuck one onto his tummy with sticky tape (ouch!) and cut some holes in another to make a mask. The look was pulled together with a pair of tiny blue swimming trunks and his red wellies. And voila, Adiboo!


Now that's imagination!
Autism home-education Northern Ireland

Cute, but angry

Lady and Thomas have clashed quite a bit over the past few days. Yesterday, the children from next door were over playing and I kept hearing Thomas getting all irate. I chastised Lady, asking her not to tease him and wind him up. She told me that they weren't trying to make him angry. They had laughed at him, but they weren't trying to be mean. When I asked her to explain, she said that Thomas had asked their visitors, very seriously and politely, if they would like a cup of tea. This of course, made them all laugh, which in turn made Thomas cross. I had to laugh myself when I heard what had happened. But I told her not to keep going on about it to him and not to call him cute; at least not to his face. He does NOT like to be called cute!

The problem is that he really is cute. He talks and asks questions all day. He has so many little theories about life. Today, he was watching TV. He told me that the TV takes the power from the street lamps, and when the TV is turned on, then the street lamps turn off. We watched an advertisement for Pringle crisps. He asked what they were and I told him. He said they were special crisps, they fill you with love and I should give some to Daddy so I'm never cross with him (not that I am ever cross with my husband ;-).

He wanted to eat a sandwich in the living room, and I told him to eat it at the big table. He protested, even when I said that it was against the law of this house. He pointed out, quite accurately and fairly, that Daddy and I often eat on the sofa, people always eat on their sofas, even his uncle does! He told me that it wasn't against the law, only really bad things are against the law, like wrecking the whole planet or stealing things or hitting people.

Now how am I supposed to argue with logic like that!

That Questionnaire Again

I wrote a few days ago about the questionnaire I received asking about the impact of autism on my family and my health and stress levels, and also about the impact (benefit) the NAS befriending service is having.

I've since spoken to the NAS employee who organised the study. She's hoping they will be able to show that there is a real need for these services, and totally agrees that we have a responsibility not to misrepresent autism. I also had a prompt e-mail response from the research team at Queen's University, and have had permission to quote from it.

The inference that by asking about “need” across a range of dimensions we were suggesting that all families of children with autism have a wholly negative experience was certainly not intended. As you will have seen, all questions (about positive and negative outcomes) invite participants to either agree or disagree. Thus varying experiences are accommodated.

This said, I do agree that it would be preferable to have instruments with a better balance of negative and positive statements with which to agree or disagree. This was one consideration when the research was being passed from an ethics point of view. However, if our research was to have any validity and scientific credibility we had to use standardised questionnaires which will allow us to make sense of participant responses with respect to population norms and data pertaining to parents of children
with other disabilities, which it has already been used for. Most fundamentally, this research is about establishing and highlighting levels of need out there, in order that a credible case may be made for resources.

I'm very grateful that they both took the time to reply to me and explain the reason for using these particular questionnaires. I know nothing about psychology and had been concerned that this questionnaire might in itself, exacerbate feelings of despair. Although you can disagree with the statements, the fact that the vast majority of them are negative, would appear to invite a more damning response.

We know the attitude that is very prevalent in most media reporting of autism and many autism charities (not the NAS or Autism NI), is that autism is always a devastating disorder that prevents children from ever having a happy or fulfilling life. For example, SPEAC based here in NI campaigns for ABA as the best therapy for autistic children, and on their homepage you find the quote, (emphasis theirs)

Autism tries to rob me of a life, of friendship, of caring, of showing interest, of using my intelligence, of being affected. It tries to bury me alive... I will control Autism... It will not control me" Williams, 1994

I'm aware of so much negativity about autism. This same negativity really affected me when I 1st learnt of my son's diagnosis. I did feel devastated, I did worry that our family life would be ripped apart, and mainly because that is what I read everywhere I looked, that seemed to be the expectation. It becomes a self fulfilling prophesy. But thankfully, I found some other writings, by autistic individuals and by parents who were able to accept their child's condition while striving to do their best for them.

I truly hope that the befriender service will gain the funding it needs and deserves. There is nothing like enough funding to match the demand. I know that many charities are competing for funds, and often shock tactics are used to try to emphasise the need for donations. I hope that this campaign is successful and ethical.

How We Dooter

Yesterday was another good day. The children dootered* about (*it's similar to pottering) drawing, reading, playing, learning on the computer and eating. They all played a few games of tag, and a game of their own invention called 'Middle Customer', which appears to involve all 3 of them spinning round while holding hands, each taking turns to be in the middle (the Middle Customer). At one stage Thomas picked up the workbook that held no appeal previously and asked me to show him how to 'do the games'. So I did, and he enjoyed a few simple exercises aimed at improving pen control. Then I did a bit of baking; a batch of buns (almost all eaten - but then they're so much better hot) and a big pile of muffins with oats and raisins. My Mammy would be proud! At bedtime I read to Lady; The Horse and His Boy by CS Lewis, with Duncan cuddled beside me. Gordon returned late from Belgium (with chocolate, mmm).

Duncan continues to draw and write for his own pleasure. He needed a bit of help yesterday and asked me 'Mummy get Barnstormer on Google film.' I didn't understand what he meant, and went to the computer, asking him if he wanted me to write 'barn'. But he insisted that he wanted barn-storm-er, and he had tried to type it; bastomer. He told me it is in Disneyland, so I wrote the word he wanted, though I didn't recognise it at all. It turns out to be a roller coaster for young children. He knew exactly what he wanted all along.

Right now, Gordon has taken Lady to Jujitsu. She told us that some of the children in the class have been mean to her, making fun of her when she got the moves wrong. I've encouraged her to tell the Sensei if anyone is bullying her or others. I told her, if anyone is saying stupid or hurtful things, to keep thinking to herself that she does not care what that person says or thinks, and to tell them so. Anyway, she's bound to get the moves wrong sometimes as she's learning. She should see how many times I get it wrong at my salsa class! Gordon is going to watch the class today to see what's happening. I hope it all gets sorted out.

A few wows

I'm snuggled on the sofa, Duncan's just fallen asleep beside me, all wrapped in the red blanket and clutching a collection of Magic Roundabout toys. Gordon's away for the night in Belgium (looking forward to some good chocolate!) and I've just had a dose of silly Thursday night TV (Hotel Babylon- fluffy, ridiculous and entertaining).

We've had a good day. I wasn't too grumpy, and the children weren't too irritating. Lady and Thomas only argued about 3 times, and Duncan was in excellent spirits. Wow!

At one stage, we were all gathered around the kitchen table, Gordon was working on his talk for tomorrow, Lady was drawing an elephant and a koala bear from her Draw Write Now book and reading about them in an animal encyclopedia, I was drawing a Soldier Sam (from the Magic Roundabout film) for Duncan and Thomas was playing Starfall on the computer. After a while I tried to interest Thomas in doing some activities in one of the many learn-to-write workbooks we have lying around. He was totally uninterested, and insisted that playing Harry Potter PC games was his work. So I left him to it, but then Duncan started filling in the workbook. There were several pages, with all the letters of the alphabet written out in rows, with 4 letters for the child to trace over, and then a picture and word of something starting with that letter. Duncan picked out a light red marker pen and carefully traced the 1st 'a', then chose a blue marker for the 2nd 'a', then the 3rd he traced in green, then for the 4th he used yellow. Next he asked me to colour in the apple, and he started on the letter 'b', again using red, blue, green then yellow. He did the same for all the letters up to k, when he tired of this activity, and decided to write 'big thunder mountain' along the bottom of the page.

He named all the pictures but didn't recognise the word or picture of an igloo. I said 'it's an igloo; Pingu lives in an igloo', he told me, 'Duncan lives in an igloo, Duncan eats fish.' So he knew what I was on about.

And that reminds me; the other big thing is that he has discovered a love of fish. We had salmon for dinner last night and he gobbled it up, with loads of potatoes and peas. He wanted more fish today and since we had no more fresh, wild salmon (delicious but dear) I offered him some sardines from a tin, and he liked them. Again, wow! I don't know whether this sudden and welcome addition to his diet will last, but for now, I'm happy about it.

Duncan has also been doing more drawing for himself. First he drew a copy of the front of his Zurg toy's costume and stuck it onto his pyjamas with sticky tape, the next day he drew a great copy of the old Ragdoll logo (as in the production company behind Teletubbies and Brum). This was his first ever solo and unasked for attempt at drawing a face, and it's good. Today he made his own 3-D copy of the Thunder Mountain train, with only minimal input from me. I'm so glad to see him gain the confidence or whatever it is to do these things for himself; not least because I'm lazy enough to hope that perhaps he won't be asking me to draw quite so often.