The dog, the hand-washing and the ASD child.

As you may have read, we’ve just got a puppy, a labradoodle. He’s very cute and has transformed our elder ASD son’s life. The dog is the first thing he thinks about in the morning and the last thing on his mind at night. He’s even okay at scooping the poop without fuss, although washing his hands afterwards is a bit more of a problem.

Our younger son, who loves dogs, has got the hang of the hand washing, just not the dog. He is definitely not the pack leader where the puppy is concerned. The dog jumps and nips at him all the time which Son2 finds very distressing because he loves to pet him. The hand-washing though is going over the top. Son2 has always been known as a very, very clean child. He never forgets to cleanse his hands after using the lavatory and spends so long in the shower I’m surprised Al Gore isn’t on our doorstep offering a lecture on water wastage.

Every time Son2 so much as brushes against the puppy with his hands, he’s at the sink, massaging soap into his fingers and doing an inadequate rinse job. It’s become so bad that in the space of two weeks, he’s come down with eczema on his knuckles. Turns out, he was using washing up liquid instead of handwash and, despite it being an eco-friendly detergent, it’s apparently not done his skin any good at all. He’s now been prescribed a special handwash by the doctor that he can use as much as he likes and he carries a tube of aqueous cream around in his pocket for use at school. Sadly however, I think getting the dog to see him as anything more than another play thing is going to take longer to sort out.

Genetic breakthough in autism

Genes ‘have key role in autism’ – BBC News

Scientists have produced the most compelling evidence to date that genetics play a key role in autism.

They highlighted tiny genetic changes that appear to have a strong impact on the likelihood of developing autism and related conditions.

The changes influence genes which help form and maintain connections between brain cells.

The Nature study highlighted one common genetic variant which, if corrected would cut cases of autism by 15%.

http://news.bbc.co.uk/1/hi/health/8020837.stm

I knew it was my fault…

Of course it’s our fault..

Mother’s antibodies may contribute to autism

Fri Apr 24, 2009 8:18pm EDT

NEW YORK (Reuters Health) – While a mother of an autistic child is pregnant, she develops an immune response to her fetus’s brain. As part of that immune response, her body develops antibodies that can attack the fetal brain. Now, in new research in mice, scientists have discovered that the mother’s fetal brain antibodies are circulated back to the fetus through the placenta, possibly triggering inflammation in the brain that could eventually result in autism.

http://www.reuters.com/article/healthNews/idUSTRE53N55320090425?feedType=RSS&feedName=healthNews

The new arrival

I am not a doggie person. My husband is not a doggie person. And yet, yesterday, we brought home a puppy. Leo the Labradoodle.

We have read that dogs are supposedly good for children with autistic spectrum disorders and so, putting our own lack of need for a furry friend to one side, we searched for an allergy-friendly pup (as my husband is allergic) and Leo is who we found.

Leo the Labradoodle

Leo the Labradoodle

He has taken to his crate and dog bed as if it had been his from birth. He is already asking to be let out for his business and the boys have fallen in love with him, as have we. Son2, however, is not so keen yet on actually touching him and every time he does, carefully washes his hands immediately afterwards. Having a dog has made no difference however, to Son1′s hand-washing habits, or lack thereof.

All of a sudden, Son1 & Son2 have become puppy experts, telling us what to do and how to do it. They have already spent much less time in front of the TV and used less computer time as they check on their charge and ensure he has everything he needs. This is actually not too much as he sleeps a lot of the time at the moment.

Neither child has taken the opportunity to scoop the poop yet, but it will only be a matter of time and when he is big enough to go for walks, this is Son1′s department as he is rather like a puppy himself and needs walking every day.

I have taken to heart The Dog Whisperer‘s advice that you must be pack leader to be in charge of your pooch and I have decided that this is the same for raising boys too, even those with Asperger’s, if not more so. I think this whole dog thing is going to work rather nicely.

Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

SNM Holiday 3: Incident on the beach

So, we were well into the holiday, we’d done Goonhilly Earth Station where Asperger’s Son2 had had a tantrum because he wasn’t heavy enough to go on the Segway Tour and then Asperger’s Son1 had a tantrum because we said if one couldn’t go then no one would (to avoid unbearable crowing afterwards). We’d done the Eden Project where despite all the amazing things to see in the biomes, the restaurant and the shop were still the most popular attractions.

So it was Thursday, it must be Tintagel. I was particularly looking forward to going up to the castle as the last time we were there we’d gone the wrong way and had to climb down a steep grassy embankment to get to the castle by which time my legs were too wobbly to go up it. This time, we knew better. The five of us, including Grandma, went down the equally steep hill to the castle but at the pay station, Son1 decided he wasn’t going up the rocky outcrop path to the castle in case he fell off and tumbled down the cliff into the sea. Now, this is a  perfectly safe English Heritage property, not for the faint-hearted, granted, as it is a bit of a climb, but safe nontheless. But he was adamant. He was not going and he was more than a little worried about his Dad going as well in case he came careening off the edgeinto oblivion and then he’d just be left with me, No-Fun Mum.

His fears were both irrational and not, as he is rather accident prone and if anyone could fall down a perfectly safe path and crash on to rocks at the bottom, it would be him. But once he had firmly refused to go up, Son2 decided he wasn’t going up either, so my husband and mother-in-law went up by themselves, leaving me to sit at the cafe and watch their progress, while the boys drank hot chocolate. One day I will get up there. One day, before I am too old to manage it.

After lunch, and further fortified by Granny Wobbly’s Handmade Crumbly Fudge (not to be missed at Tintagel), we set off in search of a beach further down the coast. The tide was on its way out and there were surfers braving the early April weather to catch a wave or two. The boys made do with rock-pool hopping and exploring and were having a great time, which meant we were too.

What happened next?

What happened next?

Son1 then starts jumping from side to side of a stream leading to the sea, bordered by boulders, some covered in slimy seaweed. Please stop that, I asked. Please stop that Grandma asked. No, we were told, it’s fun. You can guess what happened next, can’t you?

Hey, who left that slippery seaweed under Son1′s feet? A mighty splash and he lands, fully clothed, in the water. In April. Of course, it wasn’t his fault. Of course not. It was the seaweed. It was the rock. It was our fault for not buying him some shorts at the surf shop that he had wanted.

So, he got his shorts and a T-shirt as well. The nice lady, a mother of six herself, had seen it all before and put his wet things in a carrier. Son1 is now the proud owner of a  very cool Trebarwith Strand Surf Shop T-shirt and is none the worse for wear and I am just glad the lodge we stayed in had a washer/dryer.

I just imagine how boring our lives would be without our own home-grown Comedy Central players. Most people look at us parents of Special Needs children and think how sad we must be. But it’s laugh or cry. I know which I would rather do. And just think of the stories we’ll have to tell their children.

HolidayPost Number Two here

SNM – Holiday 2 – The Zoo

We booked a day as a zoo-keeper at Newquay zoo for the boys. This was an unparalleled success! The day involved being taken around the zoo with a zoo-keeper, togged up in a special ‘junior zoo-keeper’  T-shirt, feeding the otters and the penguins and generally get a behind-the-scenes look at the life of a zoo keeper.

Boys Feeding The Otters

Boys Feeding The Otters

Every time we’ve been to the zoo in the past, it has been a race around the enclosures to see who could get to the shop first. We routinely spend more time in the shop than actually looking at wherever it is we’ve gone for the day. But this time – magic! Mark, our guide for the day, led the boys around, helped them prepare stuffed rubber ‘kongs’ for the monkeys, complete with mealy worms that Son1 refused to have anything to do with and explained all about the animals we saw along the way. The boys were fascinated and never lost focus; a miracle!

He showed them poison frogs being bred in a back-room, baby lemurs, talked to them about the red pandas and helped them to feed the Asian otters and, the boys’ favourites, the Humbolt penguins. They learned so much in a morning and were happy to chat away to Mark, even though they don’t generally do strangers.

At the end, Mark told me that he was always amazed at the number of zoology students who had Asperger’s – they had, he said, the equivalent of ‘green fingers’ with animals. Son1 is now determined to study zoology and has decided not to mess around in Science anymore. I’m sure his teacher will be most relieved.

Holiday 3: Here

Holiday 1 Here

Special Needs Mum.. on holiday 1

It’s that time again.. the long (3 weeks in our case) Easter break. We took advantage last week of finishing a week earlier than state schools by heading down to Cornwall to stay in a beautiful lodge at a country club, before the price went up.

The boys refused to travel without extra pillows, soft toys, blankies, laptops etc, which made our car full to bursting point, but, once wedged in, off we set. We arrived a mere four hours later with only one incident during lunch at McDonalds when Son2 peeled off all the monopoly stickers while Son1 was in the toilets causing trembly lips and watery eyes and a promise to visit McDonalds again during the week (something to look forward to).

On arrival, the children were delighted to find the lodge had a jacuzzi bath and that was their evening entertainment set. Instructed to only use enough bubble bath to wash themselves with, I left them to it while I went to unpack. I know, I know, although they are 9 & 11, they do have Asperger’s and perhaps I should have sat with them, but they were just across the hallway and I could hear them twittering and giggling away. Some time later I also heard a retching sound and dashed in to find Son1 standing, covered in so much froth he looked like bubble man with a bubble top hat, arms outstretched and wailing that he had swallowed some bubbles and thrown up. In the jacuzzi. OMG! How long had we been there?! They had totally ignored instructions and tipped half a bottle full of bubble bath into the already foaming jets. Once Son1 was hosed off in the shower, hubby and I then had the task of cleaning vomit out of the bath (thankfully the jets had been off).  Happy Holidays! More follows here.

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