A wee problem and perspectives

Duncan wets the bed. He can use the toilet independently during the day, but almost every night, I have to change the sheet, often the duvet cover and pillow case also, and sometimes more than once.

I lift him out of bed 2 times a night and take him to the toilet. He wears nappies, though they don't do all that much good as he, well he's a boy, and he fiddles, causing his urethra to point up and out of the nappy!

It's a bit of a pain, but I reckon it's just one of those things that he will eventually grow out of.

There are some other things going on right now. He is loud. He cries a lot; sort of shouting out at me, to get various things or do what it is he wants RIGHT NOW! I'm not talking about really big storm outbursts. This low-level complaining happens if I don't immediately jump to do his bidding. This shouting can last for 5-20 mins at a time, and happens several times a day.
He sometimes pulls at me and bites my sleeve. He knows not to bite my skin (though he has done on a very few occasions when he was completely overwhelmed and unable to exert any self-control. This has not happened for over 5 months).
I can mostly screen it out, and try to help him communicate what he wants in a more reasonable way. If I ask him to use a quiet voice, he will say 'Not happy, Duncan sad!' It grates on me sometimes, and I will get a bit grumpy and whiny and do the 'Can I not even have a bite of breakfast in peace' or some similar spiel.

But you know what, it always blows over. No-one is ever hurt. I'm getting better at dealing with it and at helping him deal with his big feelings. It reminds me that I have a choice in how I view these things. I could rage against the world and ask 'why do I have to listen to this, it's so unfair, other kids don't do this, if he didn't have autism we could do so much that we can't do now, blah, blah, blah.'

But what the hell good would that do. It would only trap me in a bitter cycle of pity, that would close my eyes to much of the joy we share, like hugs and smiles and watching all of them grow, learn and progress. And there is a lot of progress.

Wow, I'm feeling really happy and optimistic now!

Summer Fun

Well after all the nerves, Lady has been loving her summer scheme. She has made friends with some other girls and really enjoys all the activities. The 2012 London Olympics road-show 'Be Part of 2012' called at the leisure centre and they watched a swimming display and listened to a talk by genius runner, Steve Cram. It last from 9 to 5 though, much too long I think. Lady is exhausted and famished when she gets home, and really grumpy too. I'm glad it's only on for 3 days a week. There's no way she (or we) could deal with this intensity daily.

On Wednesday, while Lady was gone, we took the boys to Pickie Park in Bangor. Duncan and Gordon went on the little Pickie Puffer train while Thomas played on a bouncy castle. Duncan had quite a wait before the train got moving and he was great. He was so excited; his eyes were shining and he kept waving to me 'Bye bye Mummy!' He waved at people as they went by. This is another new thing. Then we all went on the swan boats, Duncan with Gordon and Thomas with me.

We took the boys' swimming stuff and they played in the big paddling pool. Duncan was running around, splashing and jumping and laughing and squealing with joy. Thomas was more cautious and delicately picked his way around the edges. Every so often, Duncan would dart up the steps and run to the sweet shop, right by the pool. He would be looking in our direction as he ran; he knew he wasn't supposed to do it but he thought it was worth a try. Gordon and I took turns to observe Duncan. He can move so fast that we couldn't take our eyes off him for a second, especially in that crowded environment, and with all the little half clad children looking quite alike. It was usually easier to hear him than the other children though, he was certainly louder! At one stage, he tried to engage a little girl in a splashing game and I had to intervene, and another time, he blew water out of his mouth at a group of teenage girls. Thankfully, they just laughed.

(I saw a woman walk through the pool, fully dressed with her trousers rolled up. Two little boys were playing as she passed and they splashed her front a bit. The old biddy then poked one of them on his shoulder and scolded him for wetting her! I tell ya', if that had been my child, she'd have been wet all over.)

I couldn't believe how great Duncan was at dealing with all those tempting bags of candy-floss and ice-lollies right out on display. I kept telling him '1st paddling pool, then lollipop', and he managed to wait. They got their ice-lollies to eat as we walked back to the car.

Later in the evening, I was helping Duncan on their computer when a wasp stung me in between my toes. It bloody hurt!! Duncan was most interested and after volunteering to 'kiss it better', he asked me to draw a wasp!

Some of the other things I have had to draw recently;

• Ice Age nut
• Bug's Life false teeth (from the Geri's Game short film after the film on our video)
• Bug's Life nasty grasshopper (hands go down)
• 4 Magic Roundabout characters
• Lots and lots of Snow White Grumpy pictures
• Thomas the Tank Engine lighthouse
• and many more!

A new experience

Lady has gone to summer scheme. It's her first day and she was nervous when I dropped her off this morning. She doesn't know anyone there. It's being held at the local leisure centre and should be loads of fun for her. The only problem is, it lasts from 9 to 5; such a long day! We're missing her too.

Thomas and I went shopping this morning. I wanted something to wear to my cousin's wedding in August. I told Thomas what would be happening, and that it probably wouldn't be much fun for him, but he wanted to come anyway. He said he wanted to see my new clothes. He gives me sartorial advice some mornings, so perhaps there's a future in fashion for the boy!
(Oh, just to record a lovely Thomas moment; yesterday morning, he came into our room for his daily hug, and when I told him I had to get up, he said I just needed 'one more bit of hug-ness' before he'd let me go. He's such a darling!)
So off we went, with him charming all the old ladies as usual.

On Sunday we went for a long walk together, through the country park and down to the beach. On the way, the children started playing in the stream while we rested on a bench. An old woman was out walking her dogs, 2 friendly and imperturbable creatures. We said hello to each other and she was just about to turn round to the sight of Duncan standing by a tree, and who had chosen that very moment to empty his bladder. So I quickly called out 'Isn't it a lovely day' and we had a nice chat and she admired the children and thought we were a lovely family altogether ;-)

When we reached the beach, Duncan started to ask for his small wand. I suddenly remembered that the last time we were at that particular beach, he had brought and lost a little toy wand. Obviously he thought it would have turned up again. I was able to distract him with a bag of pistachio nuts. I ended up carrying him on my back for a while.

Our journey then took us through some meadows so they all ran through shouting 'swishy swashy' (Bear Hunt reference there). It was a lovely time together.

In the afternoon we decided to have our first ever family trip to the cinema. We watched Over the Hedge, and everyone enjoyed it. Gordon bought some popcorn for the boys and they sat, enthralled for the whole show. Duncan was funny; he cried a few times, when he saw the characters on-screen cry, and he was particularly taken with the phrase 'Stella, STELLA!!' shouted by the cat who was in love with the skunk; hope I'm not ruining the plot for anyone here! However, Duncan thought he was calling 'stand up' and a few times throughout the show he shouted 'stand up!' I had to tell him that we are quiet in cinemas. Duncan also looked round to the projection room a few times, with a big smile on his face. There was something about that which ticked him.

I'm so happy to know there is another thing we can enjoy together as a family.

Not a novel treatment for autism

A few days ago, I listened to the BBC Radio 4 programme, My Brilliant Baby; a discussion about hothouse parenting versus benign neglect. One of the contributor's said she and her husband had started out as laid-back parents, but when they realised their son had autism and his special-needs nursery was inadequate, he started 4 years of intense behavioral therapy. She says about her son;

His play was terribly repetitive and obsessive and he wouldn't really communicate with others. If he was going to learn and grow up as a whole person and happy person, Sam was going to have to be actively taught all the things that other children just absorb naturally (snip)

Sam underwent 40 hours of lessons a week with a team of behavioural therapists (snip)

Everything in Sam's environment became super-controlled. His favourite toys-his beloved dinosaurs-which he would arrange in circles again, and again, and again, and again-they were all put away and he was only allowed to play with them for half an hour every day.

He had to learn everything. He had to be taught to look at people and recognise emotions. He had to be taught not to grimace weirdly and not to walk away while someone was talking to him.

She then refers to some books they made including one which began;

'I must not talk all the time about dinosaurs, bugs and death.'

(said in a monotone, to the merriment of the other guests.)

She mentions that when they were out for a walk she thought;

'Oh good, he's generalising social skills', for as Sam was gradually becoming human, I was becoming a creep.

We kept on Sam's therapy for 4 years. I think it was pretty successful, though of course as he doesn't have a twin, I can't really tell how he might have shaped-up without it.

Sam is 10 now, and although he is still a difficult boy and needs support at school, he has genuine friendships with other children and he also doesn't seem strange the minute you meet him.

They gave up the therapy after 4 years because 'Sam needed to have a life.'

He now says rather poignantly, 'When I was young, you ever let me play with my elephants, and there were always these ladies everywhere. I never had any space.'

I thought this was a interesting interview. The mother obviously wanted to help her son, but the piece included many autism cliches that I believed for a while when Duncan was diagnosed. It's sad that she felt she had to fill his days with so much therapy and restrict his access to his favourite things.

I heard this programme on the same day as I wrote my post A novel treatment for autism. It describes the opposite approach to that we are taking with our son. Duncan plays with trains a lot, or with his little Zeebad figure and paper tube characters. His play looks repetitive, but I wouldn't think to restrict his access to those toys. I also know him to be fully human already, even without such training as she describes. Although I have no way of knowing whether this is the right approach, I would imagine than when he is 10, he will be happy in his own skin, perhaps he'll have one or two good friends but he will seem strange to people who meet him. About that last part, so what! As my children are learning, different is good!

Leitrim lanes and Sligo castles

We had a great weekend with my brother, sister-in-law and their 2 daughters. It really was as perfect as we could have hoped for. The children enjoyed playing outside together in the sunshine. My niece C. adores her big cousin Lady and wanted to emulate her hairstyle, so I had to put C's hair into 4 plaits too. Thomas played with cousin E. who is almost 3. They had fun on a toy tractor and Duncan showed them how to drag each other in the trailer.

I went for a run -4 miles!- with sil. I. She's been running for a while now and is much fitter than me, but I manged to run most of the way though I walked up the hills. Our route was along narrow, isolated country Leitrim lanes, past bogs and low mountains. I thought of the John McGahern's Memoir in which I've just been reading his recollection of walking the Leitrim lanes in his childhood. I. told me that he died a few months ago. I hadn't even heard and feel a bit shocked and bereaved. Last night I read the heartbreaking passage about his beloved mother's death when he was a boy:

Those who are dying are marked not only by themselves but by the world they are losing.

He would have known he was dying when that was written. He was a wonderful, author who wrote truthful accounts of lives and family, place and the seasons. May he face the rising sun.

We went to a 'Game and Country Fair' at Makree Castle in the afternoon. Last year at the same event, Duncan had wandered off and it took us 15 fraught minutes to find him (standing by an ice-cream van). Amazingly, he recognised the place although it's just crowds of people and stalls in fields. He pointed to a group of stalls and asked for 'brown sugar cubes', meaning fudge. That section contained the shopping stalls, though how he could tell them apart from a distance, I don't know. He was on great form, stayed by me (with lots of reminders) and with Thomas, really enjoyed patting loads of well groomed dogs, there for the pet show. Gordon joined a queue to buy ice-creams for everyone. Duncan was getting a bit anxious at having to wait, and it wasn't helping him that I kept reassuring him that he would get ice-cream soon. So I walked close to the van, and pointed to each of the people in front of Gordon in turn, saying '1st that man gets ice-cream, then that woman, then that man, then that man...then Daddy gets ice-cream for Duncan' and I repeated this information as the queue reduced. He must have understood better what was happening as he was content to wait then.

All the children enjoyed the day. Lady liked the falconry display. Duncan was enthralled by some dancing horses and afterwards, he was singing the Gipsy Kings song played . Even when lyrics are in English, it's usually just a collection of sounds to him and although he has no problem repeating the phrase, it's good when someone says it slowly enough for him to hear the individual words.

We bought a selection of good cheese, olives and bread and feasted after dinner when the children were finally asleep. The next day we had a relaxed walk, played and ate some more before heading back to the north east and home.

A novel treatment for autism

It's called maturation; that is, the natural process of growing and learning.
My child doesn't need treatment, he needs a little teaching, and not even too much of that since he learns in a fairly autonomous way.

When I first learned that Duncan was autistic, I was determined to find the most effective therapy (well cure actually, but I was a lot less enlightened then), and was willing to throw myself selflessly into ensuring that every waking moment was optimised.

(That reminds me of a scary article I read recently. It describes all time a child spends outside of some 40 hours a week behavioural therapy sessions as dead time. The reader is instructed to ensure the poor child is never given a moments peace to just play or ponder, as the parent must constantly yap and sing and force new toys and flash cards and leaning opportunities on the child.)

But a few years ago; I thought that I had to be doing something, or else I was letting my son down and therefore was a bad mother. Thankfully what I decided to do first was to read widely and I came across the view that autism wasn't a terrible thing and this resonated a lot more with how I viewed my son as a quirky, sometimes exhasperating, often demanding, always loving and wonderful boy. As I've mentioned before, this growth of acceptance lead to advocacy and is part of the reason for my blog title.

What I know now, is that it is actually very easy (most of the time) to raise Duncan. We have optimised our living environment to suit his and our needs. We lock some internal doors to avoid unnecessary battles and have a safely enclosed back garden. Difficulties arise often enough, but I'm getting better at dealing with them. This weekend we were away at my brother's house and visited a crowded fair, and he was excellent. I enjoyed his company and was proud to be his Mum.

Duncan has a TV with an integrated DVD player and video which he uses a lot. He needs to watch and re-watch films to catch what is said. I hear him saying the phrases over and over trying to make the right sounds. I see it as an important educational tool for him, although I previously thought only neglectful parents allowed their children to have a TV in their bedrooms. He plays most of the day. He asks me to draw pictures and has to find words to describe what he wants. We manage to squeeze in lots of maths too, as I ask him what shape the desired drawing should be, should it be bigger, longer, are there stripes or dots, do they go above or below. He can turn on the computer and use a variety of software and websites to play and learn. He dresses-up most days and re-enacts scenes from the films. He runs and climbs, rides his bike and scooter, chases and bounces. He loves to sit on my lap for cuddles or a story.

Over the past few months, with no great effort on my part, he has continued to increase his vocabulary, his knowledge of the world, the words he can sight read and he has extended his diet. I just smile and play and keep loving him.

That's all I have to do.

A few good days

Some friends came to visit on Monday. Lady and K. had a great time in Harry Potter fantasy land. At one stage they went off with a selection of saucepans, glasses and some smoothie I'd made earlier, and pretended it was Felix Felicis (a luck potion). Well, it was the right colour! Duncan was a bit stressed out and stuck right by me for a while before he decided to head off and play again. Thomas played with the little 1 1/2 year old girl. Their Mum was commenting on how gentle and lovely he was with her. I told her that I reckon he hasn't had to toughen up like many boys do when they go to nursery. She then told me a few stories about situations her son has had to deal with at school.

The following day, we met up again at a brand new, and very busy playground beside their house. Thomas and Lady darted off and climbed and slid and swung while I stayed by Duncan. He liked the roundabout best. It's flush with ground level to benefit wheelchair users, but it's also easier for toddlers to get on and off. They seem to judge the speed so well and know when it's slow enough to climb on or off. Duncan, clutching a picture of Fizz I had made that morning, was loving this roundabout. He lay down and closed one eye so he could look more closely at the small gap between it and the ground.

A dog was wandering around outside the playground fence making Duncan very excited. No-one was with this dog, and Duncan kept opening the gates and letting it in so I had to herd it back out a few times. Who designed a small playground with 3 gates anyway! There were frequent shouts of, 'Duncan, gate CLOSED! No dog!' as I ran up to him. He had bit of a shout and cry when it was time to leave and a few old ladies were having a good tut about us. I was admirably upbeat and we had a snuggle and moved on happily again.

Yesterday, I bought a 3 person tent on impulse at Tescos. Well, I had looked at them online a few days ago. We put it up in the back garden and all 3 children brought out their duvets to sleep there. When they were still shouting and laughing and running around at 10, (it was still bright daylight) I took Duncan (the noisiest one, who'd have thought it!) inside and he feel asleep beside me on the sofa. Thomas and Lady both went to sleep quickly too, then I carried Thomas back inside and I slept there myself. It's been years since I slept in a tent!

Today, we're going through a few things on our 60+ point to-do list before going to spend a few days with my brother and sister-in-law. The weather should be nice and I'm looking forward to seeing them again.

Autism Prenatal Protest

Who has the right to decide who should or should not inhabit the world?

When I was pregnant for the 1st time, I was asked during a routine ultrasound scan, if I wanted a nuchal fold measurement carried out. I was told it was a screening test which could be used together with maternal age to give a prediction of the likelihood of Down's Syndrome. I said yes, as it wasn't invasive and I thought it would be interesting to know the outcome. I was told that it was highly unlikely that my baby would have Down's Syndrome. I had already decided that I really wanted that baby no matter what, but I wonder how I would have felt if I'd been told the opposite?

When I was pregnant with Duncan and then Thomas, I had changed my views on a few things about the whole medical management of pregnancy, and though I still opted to have 2 ultrasound scans each time, I refused all other diagnostic or screening tests. Once again, I wanted the child I was carrying and I didn't need the pressure of these tests.

Prenatal testing puts pressure on parents, mothers in particular, to reject a specific child. This is a whole different issue from that facing women who are pregnant and do not want any child at that time. Woman are getting the message that they would be irresponsible to chose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'. This is eugenics. It is anti-feminist.

Parents who have learned through prenatal testing that their child is disabled, often don't know enough about the rich and rewarding lives of people with the same disability as their fetus. They don't know the joy that child can bring. No-one knows what will become of any child, how they will turn out. I will admit that for now, raising my autistic son is more difficult at times than raising my non-autistic children. People may see me running around after him or dealing with him when he is frustrated and shouting or lashing out, and they might think, I would prefer not to have to deal with that. I want everyone to know that the joy hugely outweighs the sorrow. I would not want my boy to be anything other than who he is. The idea that he could be among the last generation of people who think in his own quirky way, just like the dwindling numbers of people with Down's Syndrome who make it, is scary and very saddening.

It is not fair for a fetus to have to pass a test just to be born. Our society gains from diversity in all its forms. Disabled people cannot feel accepted and supported while it's possible to stop children from being born just because they're like them. Society can change and offer more help to families living with disability. A change of attitude would be a good first step.

More information on the test is available here.

What not to wear

Yesterday morning Thomas and I have made some chocolate chip cookies using the Blessed Delia's recipe in her How to Cook book. Lady and Duncan ate 4 each before I hid the rest! Lady described them as 'Over delicious' which I think is good.

I sat down to have my cookie with a cup of tea and a browse. Several BBC headlines struck me immediately. Most horrible is, Patients 'suffer extensive abuse'. This describes the unsurprising yet disgusting exposure of systematic abuse, physical, emotional and financial, in care facilities for people with learning disabilities. I will do everything in my power to ensure that no child of mine ever spends time in one of these places. If Duncan needs more help as an adult than people usually do to get by, I will help empower him to choose where he is based and how that help is provided.

I then had a look at the Education headlines, which always help convince me of the case for home-education, especially things like; Classes 'may get knife searches'.

"Teachers could be allowed to carry out knife searches of entire classes - rather than just individual pupils - under government proposals."

There was also Campaign to tackle gay bullying. I'm glad efforts are being made to help prevent this abuse of children, but it's disgusting that more hasn't been done to stop it already.

Lastly I read about School uniform trade investigated. I used to think school uniforms were a good idea but now I think it's ridiculous, especially the daft concept of dressing little kids like bankers in grey suits complete with ties and (for posh schools anyway) blazers. I found that when I had children in school, I was forced to buy overpriced tops from a selected source, just because of a school logo. Then it was such a hassle trying to make sure they were clean every morning. These days it's perfectly acceptable for Duncan to run around in whatever odd combination of dressing up clothes he wants. Yesterday he was wearing his red top-red pants combo, with artfully placed strips of white paper crossing on his chest and the whole look finished off with his Dad's black woolly hat pulled up high on his head. He was doing his impression of 'Soldier Sam' (aka the 'Henchman') from The Magic Roundabout.

Just to give me an excuse to post this, Duncan loves wearing his Captain Hook costume too. Much better than a navy jumper and grey trousers, don't you think!

That five things thing

Deb tagged me.

5 things in my refrigerator:

• Strawberries and gooseberries,
• cheese-Irish, French and Greek!
• 3 types of mustard,
• carrots,
  
• corn on the cob (Home on the Range style!)

5 things in my wardrobe:

• 2 pairs of silly shoes I hope to wear when I'm grown up!
• a box of art and craft stuff, glitter, paint, beads and the like,
• a pile of children's books,
• a pretty sequin embellished skirt which I wore last weekend,
• lots of Primark gear (It's by 'Atmosphere' daarling!)

5 things in my handbag:

• a cheap mobile phone which is constantly turned off,
• woman's emergency equipment,
• a purse which usually has no cash but always has lots of cards,
  
• a toy train,
• sunglasses; I always have to wear these when driving even if it's not that sunny, ever since I had eye laser surgery.

5 things in my car:

• 2 car seats,
• in-car DVD player, worth every penny on those trips out west,
• lots and lots of crumbs and stains,
• various small toys and trains,
• a towel and some plastic bags, just in case...

5 people I am tagging:

No-one actually, anyone I would have tagged has already been tagged!

Ups and downs

I went to Dublin with Gordon on Friday while my Dad looked after the 3 children. We took the train from Belfast and stayed in a really nice hotel on St Stephen's Green right in the heart of the city. It was a wonderful trip. The sun was shining both days, we walked round the park and ate ice-creams, we enjoyed several wonderful meals, we dandered up Grafton Street and Gordon bought a stack of Cd's while I found a 'grey spring' for Duncan (a metal slinky- so he can hold it on his bottom and bounce around pretending to be 'Zeebad') another slinky for Thomas and a tacky leprechaun-topped, shamrock-plastered pencil for Lady. She also got the newest Harry Potter DVD so she's happy. We jogged round the park on Saturday morning, though we had stayed out late the night before enjoying a few drinks and the buzz in Temple Bar.

It had been a brilliant break. Even the train journey back was nice; watching the gorgeous scenery or reading the papers in comfort and quiet. And it was great to see the children again and to hear how much fun they'd had with their Granda.

It all went wrong on Sunday though, another downturn on the roller coaster as a broken promise meant I was forced to let a friend and the children down. I went to my home town with Thomas and Lady and my Dad. My aunt had organised a memorial mass and meal at her house as it would have been my Mum's 60th birthday on July 2nd. It was a good chance to see aunts, uncles, siblings and cousins and all their offspring.

Today, the children, guinea pigs and I are enjoying another warm day and ploughing through a big box of books from The Book People. Thomas was reading some Oxford Reading Tree books and Duncan loves the Little Red Train Adventure Playset, with maps, postcards and tickets and a clock all stuffed into paper satchels in the book.

I'm living in interesting times.