Sunday, 13 April 2014
This is very different from my usual writing blogs, not to mention a great deal longer. However those of you who know me personally will know it is a subject very close to my heart. My thanks to R.J. Scott for inviting me to take part in her regular April Autism blog hop and apologies for late delivery, my Internet connection went down until an hour ago.
Adam will soon be eleven but he's never been anywhere without an adult to look after him: not even to the shops or the local park with his thirteen-year-old brother. He cannot play in the garden without somebody within sight. He's too anxious to go anywhere alone and, even when he's with an adult, when he gets scared he can run into danger, blinded by panic.
Adam has autism. He was diagnosed when he was three. It's as if he went into the 'terrible twos', got lost in a maze of dark tunnels and couldn't find his way out. At that time his fear was uncontrollable and he would try to run away wherever he was; hide and not respond to his name while people searched for him. He'd kick, hit and bite when people who loved him tried to restrain him to keep him safe. It could take half an hour to get him in the car to drive his brother to school. He had no speech and seemed unaware of the people around him, climbing over them as if they were furniture.
Adam was born in the late summer, which meant he had to enter school when he was four years and one month old. There was no way he was ready and, because of his non-compliance, the Local Authority wanted to send him to a school that was not, in our opinion, in any way right for him. We took the Local Authority to Tribunal to fight for Adi's right to one-to-one support in a mainstream school. It was an expensive, harrowing experience, which we won. The problem was that we'd won the War but we lost the Peace. The class teacher's attitude was so negative and the one-to-one supplied was so inadequate that we knew he wouldn't be safe and he certainly wasn't happy. My daughter and I both taught in local Further Education Colleges, so we decided to cut our hours and educate Adam at home. We were lucky to have the help of a wonderful Occupational Therapist who specialises in Sensory Integration but, at that early point in her career, was willing to be part of Adam's Home Education Team. Apart from that, if something we needed wasn't available we created it for ourselves. We set up Primetime, the Home Education group whose whole ethos was based on disabled and mainstream children mixing and playing and learning respect for each other.
We have a mix-and-match approach to Adam's education; working on instinct a lot of the time.
It hasn't been easy. In fact most of the time it has been a long, hard grind, especially for Adam's mum, who for several years survived on two to three hours sleep every night, because Adam woke and prowled the house. The gluten and dairy free diet he's on has made a lot of difference to Adam's well-being, but it complicates life and it costs a lot.
But it is all worth it.
At ten-years-old, Adam is lively, talkative and funny, and one of the most loving little boys in the world. He is starting to read, his maths is pretty good and he loves drawing. He goes out to various Home Education clubs where he meets friends and is learning to play, but always with his mum close at hand. He doesn't bite or kick and tries very hard not to hit, although sometimes 'my hand does it before my head can say no.' He frequently tells the people in his life how much he loves them and melts our hearts by asking for help and explaining, 'It's too tricky on my own.' One problem that's current is that Adam gets lonely and scared at night and creeps into his mum's bed. He's still a young and very innocent child but, in the near future, this has to be sorted out.
Adam loves animals. He adores the family cat, Tails, and helps look after the two naughty rabbits, Bobby and Endy. He was desolate when his dog, Rolo, died of cancer a year ago, and still speaks of him often, taking comfort in the thought that Rolo's back doesn't hurt him any more and he's in Heaven 'dancing with Michael Jackson.'
Adam's life is much better than anyone ever expected, but he needs something else, he needs a friend who is there all the time to play with and keep him company in the garden, and who, in time, can help him achieve the independence of going out alone. He needs a very special dog with special training to help fill the gaps in Adam's life. In the summer Adam will get his very special Golden Retriever, fully trained to help with his needs and allowed to go with him anywhere that a Guide Dog would go: shops, restaurants; cinema; bowling; the beach; all the many places where Adam finds it 'too tricky on his own.'
So what will this dog do?
He'll keep Adam company, lying beside his bed, at night, and help him to stay in his own room. He'll be out in the garden with him when he's on the swing or playing, which will give Adam more independence and a playmate who's devoted to him.
When out and about the dog's lead will be attached to Adam's wrist and if he runs in panic the dog will circle him, anchoring him down, until the adult with Adam can intervene.
The dog will be trained to sense Adam's mood and, when he senses that Adam is getting agitated he'll gently paw him to distract him before Adam has a 'meltdown.'
He'll be a companion and a friend, who never withdraws his love and is always there ready for a game and up for a trip to the park or beach.
He'll give Adam the confidence to face new experiences without being overwhelmed by anxiety and the dog will have his own passport for travelling abroad... Jet set dog!
In time he may be able to accompany Adam to the park or shops without a carer. That will be the ultimate in independence.
This perfect dog will even be trained not to chase the cat or rabbits.
Service Dogs Europe train the autism dogs and puppies to an amazing standard. Check out their Facebook Page to see some of the cutest pictures in the world. But there's one problem, Adam's Golden Retriever friend, companion and guardian will cost £4,000. So we are fund-raising in every way we can, car boot sales, soft toy stalls, e bay sales, an e-published short story anthology and a sponsored dog walk.
Adam wants to play his part and has illustrated a story I wrote for him, in his own unique style. Those who know about autism, and those of you who are authors, will know what an amazing achievement that collaboration was. Adam's improved version has more trains in it than the original, but he understood the need for the Dream Train and Adi to go through the darkness alone, although it cost him an effort to draw it. One of my favourite moments was when I asked him if he knew how to draw dragons and he said, 'Of course, Grandma. Coming right up,' and drew Chinese Dragons. Genius!
Adi and the Dream Train is available to buy from Amazon but the way we'd prefer everybody to buy, to maximise the profits for Adam's dog, would be for anybody who'd like to support us to go to http://www.mycharity.ie/event/jo_halsalls_event/
If you pay £10 or more and would like a copy of Adam's book, contact me on firstname.lastname@example.org and send me your address and I'll send one out to you.
All profits from the book will go to Adam's Yellow Dog Fund. Thank you for your support.
Thank you for staying with me through the longest ever blog. As you'll have guessed, my competition is animal related. I'd like you to send a brief account of how an animal has influenced your own life or that of somebody close to you. I'll ask Adam and his his mum and brother to help me choose the winner, who will receive a £6 ($10) Amazon gift voucher.