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I vividly remember when I first heard about the Internet. I was sitting in a friend’s Stoke Newington kitchen drinking a glass of wine, she had on the table a laptop which she said she needed to close down. I asked her what she had been doing and she said, “surfing the Internet”. I asked her what that was and she said it was bit like a library there was no point in just going on it unless you wanted to find out some information. That must’ve been over 15 years ago. I’m not sure that I still agree with her. It is great for finding something out but I seem to spend an awful lot of time playing on it. Watching clips on YouTube and looking things up that I have a little interest in. Last month I was googling “joint attention”  and came across this amazing website.

here’s the link  www.autismgames.org

I have since spent hours playing on it, be warned if you have an interest in autism you too will spend hours there.

This site has a large number of games and activities for autistic spectrum children. Many of the activities are extremely simple and need very little equipment perhaps a balloon or a straw. Others require jigsaw puzzles, a bean bag or a trampoline and some others seem to require more complicated equipment. However nearly all the activities have a video clip explaining very clearly how to do the activity. There is also progression in the activities. It is one of the best websites for autism that I have come across. I wish I had found this website (if it existed) all those years ago when my own daughter was diagnosed with language delay.

This website has been created by Tahirih Bushey who is a speech and language pathologist and an autism consultant.  For 12 years she has specialised in the treatment of children with autism spectrum disorders.  She is currently employed by the Scottish rite clinic for language disorders in Duluth, Minnesota. Here she works with young children and their families involving parents and carers in every aspect of intervention. She says it is for these children and their families that she has created her website. She quotes George Bernard Shaw “We don’t stop playing because we grow old; we grow old because we stop playing.” She also says that playing is like breathing and she signs off from her website saying

Happy Playing.

While Mel is away I thought I’d write a blog for her and about her, cos its funny.

T’s Guinea pig was off its food and Mel took it to the vet.

In the waiting room owners and their animals came and went, until it was her turn next and a cat lay asleep in its cage.

A dog entered the room, barked at the cat, who hissed and the Guniea Pig died.

Now Mel is no vet and neither were the others, but all agreed that it had passed on and furthermore that it was funny (perhaps you had to be there) and the more they all thought about it the funnier it became until tears began to flow.

At which point the vet emerged and called Mel in. And she went.  Well what else could she do?

The Vet saw the tears and a dead pet and Mel suddenly felt that she shouldn’t be laughing (which always makes it worse) and the vet did her professional examination – really creating time and space for the sad pronouncement, time and space being hauled in by the gulp-full by my hyperventilating sister.

“I am afraid to tell you…” she began

School is out and six weeks of summer holidays stretch before us. I know most people look back over a year in December or January but I, who was a teacher for years, start my year in September so the summer holidays are when I look back over the year.

It is nearly a year ago that I bought and installed my voice-activated software. At the time I was extremely sceptical of the product because, years ago my darling husband got me a voice activated computer program that was meant to be able to type the words I spoke. He took our new baby daughter out for the day so I could set it up, but two hours later I had not got beyond the third word which I remember was boat. I must have said it 100 times the wretched computer would not /could not recognise my voice. I called my husband home. That was 12 years ago.

Nearly a year ago I was at a meeting at my daughter’s school for parents of children who are in learning support. A mother told me that she had just got a voice activated typing program for her dyslexic husband and it only took a short time to set it up.  This meant he could now use a computer.  I did some research and ordered one for myself. I asked the sales person if it was mainly brought for dyslexic users and to my surprise she said no. It was many used by people with poor mobility or doctors!

While many products don’t live up to expectations, I have to say in this case it has. I love my voice-activated software and it has completely changed the way I communicate. I now send lengthy e-mails and even enjoy “writing”. For someone who had a genuine fear of putting anything in writing it is quite an achievement. I am very dyslexic and because of my age it was missed at school and college.  Spell check is great, but often I get the word so wrong that the poor computer has no idea what I am trying to say.

Last week I was helping my younger daughter with her homework, she was dictating quietly to me and then I was talking to the computer to type up her homework. I know she should have been doing it herself but we were running out of time!  Then the phone rang and I told her I would be back later to help. Ten minutes later I walked into the room to find her wearing the headphones and talking to the computer. I told her it wouldn’t work as it was programmed to my voice. However we obviously speak in a very similar way because the computer had understood most of what she said!

My only criticism of the system is that everybody else in the room needs to be quiet while I’m using it. Our computer is in the main living room (so that I can monitor my daughters online), this means no TV if I am typing!

The voice activated software that I bought was Dragon speech recognition software. I’m sure there are others on the market but I have no experience of these. On their web site is a very moving video clip in memory of Stuart Mangan who was paralysed from the neck down who used this software to give him more independence. It makes me realise how lucky I am that I just have a problem with spelling.

While my own attitude was always “who needs to write ‘enormous’ or ‘gigantic’ when ‘big’ will do?” I now ask myself how long do I make my elder dyslexic daughter (who has a stronger Yorkshire accent than me) and my younger daughter, try and use a keyboard to type before I buy them their own Dragon?

I have now been taking F, an autistic four-year-old boy to Riding for the disabled for nearly a year. It is so exciting to see the progress he is making. It is very encouraging that all the hard work his parents and the ABA team have put in is paying off.

I commented to his mother the other week how much more engaged he was with the adults working with him. He was no longer stimming to drown out the adults chatter. He used to do this by singing nursery rhymes. In fact I told his mother that he was positively flirting with the adults. His mother told me the correct term for this is joint attention. His “look at me” and “I’m so clever” body language is engaging with the adults working with him. A year ago he was hardly aware of other people around him.

Every week when we drive to riding I will comment on the things we can see from the car. I will say “I can see a truck” “I can see traffic lights” “I can see a red car” for six months there was no response, recently he has repeated my comment back to me, but this week he said “I can see cows” and there they were.

I also visited him at nursery where he is supported by a member of his ABA team. He was working with a group of children and bricks with numbers and letters on them. Each child was asked to find a particular number and put them in order. He allowed other children to put bricks down and put his number five in the right place. I was amazed, because only weeks ago if I put a puzzle piece in a puzzle he was doing he would have to take out my piece and put it back in himself.

Later it was running races. We have worked hard on “ready steady go” so he was able to  join in with the teacher, however he did not realise that he had to run on “go” so he had to follow (with encouragement) the other children running towards the fence. However on the second race he not only joined in, but also ran on the command – with a huge grin on his face.

He certainly seems to get genuine pleasure out of mastering new skills, which is a great pleasure for me. His ABA teacher said the next big task is to get him to engage with his peer group, because they will be his best teachers. When I think back to how he was when I first met him over a year ago – stimming all the time and requiring prompts for most activities – it is almost unbelievable that it is the same little boy.  His peers are now much more likely to enjoy interacting with him.

Starting school in September will be a challenge, but that is true for all children. Now at least I feel that he has the ability to enjoy learning the skills he will need to have a real chance to be happy and enjoy school, thanks to ABA.

Thank you Wikipedia…

Joint attention is the process by which one alerts another to a stimulus via nonverbal means, such as gazing or pointing. For example, one person may gaze at another person, and then point to an object, and then return their gaze back to the other person. In this case, the pointing person is “initiating joint attention” by trying to get the other to look at the object. The person who looks to the referenced object is “responding to joint attention.” Joint attention is referred to as a triadic skill, meaning that it involves two people and an object or event outside of the duo. It is well documented that infants display both types of joint attention at nine months of age. Recently it was discovered that infants as young as three months clearly discriminate between triadic and non triadic contexts.^[1] Great apes (orangutans, gorillas, chimpanzees, and bonobo) also show some understanding of joint attention.^[2] There is a debate in contemporary psychology about the psychological significance of joint attention: the majority of theorists believe that although both humans and the great apes use it as a means to an end, humans alone also use it for purely altruistic communicative purposes,^[3] whereas a vocal minority maintain that joint attention is always a means to an end (i.e., that “pure communication” in the infancy period is a myth), and therefore joint attention by apes and humans reflects shared psychological processes.^[4]

Several studies have shown that problems with joint attention are associated with developmental processes that are important in the etiology of autism.

I was on holiday last week at Glastonbury, this was the second time I have been and I enjoyed it far more this time. I think that is due to knowing what to expect. Last year I only realised that I had enjoyed it when we were back in the car driving home! This year the family camping was full and we ended up camping in Spring ground, behind the disabled camp site.

Last year I had not been aware of any disabled facilities, the camp site is screened off and officials at the gates check that only those entitled to enter the field did so. I asked the officials what sort of facilities were available and was told that there were wheelchair accessible toilets and showers, plus a flushing  toilet that was cleaned more regularly than others at Glastonbury. Also a secure fridge for the storage of medicine, not wine or beer! There are also power points for charging wheelchairs and other medical equipment. From what I could see there was also a lot more space around the tents that another campsites. This meant that the campsite did not get as churned up and is muddy as the more tightly packed sites did. However the rest Glastonbury did get very muddy. And I am sure that getting round in a wheelchair was extremely difficult.

This year I also noticed viewing platforms at the Pyramid, Other, Acoustic, West Holts, John Peel, The Park main stage and Dance East & West Tents. These platforms were just for the use of disabled festival goers plus a friend. Every platform had a team of stewards ready to assist people where needed.  As my children were older this year and I was more relaxed I let them go off on their own and our default meeting point at each stage was in front of the viewing platform.

On my return home and I once I had done a few loads of muddy washing I looked at Glastonbury website under disabled info. And there was lots of information for disabled visitors including a whole section for deaf visitors.

If you had not thought of going to Glastonbury, I know it’s not everybody’s idea of a holiday but if you are wheelchair user it is a possibility. My highlight was Elbow, when we all did the reverse Mexican wave and watching it ripple up the crowd at the Pyramid stage, I could not believe how many people were there all joining in, also the fact that the lead singer Guy Garvey was covered in mud like the rest of us. I loved the kids field,  my daughter made a mirror, a chicken out of old plastic bags and a wallet out of the text pack, I am sure some of these activities will be done with my Brownie pack or made as Christmas presents for family members!. Other high points were s singing American Pie with Don Mclean, we had been given sheets with the words on but I was able to hand mine to my neighbour as I know all the words!  There is something rather special about drinking cold cider in the sunshine at 11 am singing sea shanties with the Fishermen’s Friends, and for that we were almost at the front. I wonder who will headline in 2013?