New hope for Joe
AT 13 months old, Joe Squirrell was a bright little boy with an ever increasing vocabulary.Just a few months later he became locked in a frustrating, silent world as his powers of speech disappeared.
By Jessica Nicholls
AT 13 months old, Joe Squirrell was a bright little boy with an ever increasing vocabulary.
Just a few months later he became locked in a frustrating, silent world as his powers of speech disappeared.
He was diagnosed as being autistic and what promised to be a bright future suddenly turned into a leap into the unknown for his shell-shocked parents Peter and Sandy.
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Now there seems to be a light in the darkness with the Son-Rise programme in America, which could help Joe to communicate with his family in ways he has never done before. JESSICA NICHOLLS reports on their bid to raise the £10,000 that will give Joe a chance at life.
IT is six years since Peter Squirrell and Sandy Hales heard their youngest son speak.
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He was 13 months old and had a six word vocabulary, was constantly looking about him and had an unstoppable interest in life.
But a month after he had an MMR jab, that world seemed to be torn away from him – he never spoke again and he lost interest in the world going on around him.
Peter and Sandy from Gypsy Lane, Needham Market are firmly convinced that it was this jab that lead to their son becoming severely autistic, although no links between the two have ever been proven.
Sandy said: "We thought he was deaf and he lost all his words.
"All the photos we have of him before that, he is looking at the camera.
"Now there is none because he will not respond to anything."
But they have found a light at the end of the tunnel and the Son-Rise programme in America could be the answer to their prayers.
However, it costs £10,000 and for the last three years the family and their friends have been busy fundraising.
Next week is their biggest fundraiser yet with a huge live music day featuring tribute Madness band One Step Behind. According to Peter they are often billed as better than the real thing.
Other bands include Hot Rod (Rod Stewart tribute) Funk Foundation, Titian Red, Smouldering Sons of the West, Q-Balls and Bandicoot.
The Son-Rise programme was started by a man called Barry Neil Kaufman and his wife Samahria Lyte Kaufman whose son Raun was written off by doctors at the age of two with severe autism.
That little boy has been transformed from a mute, withdrawn child, into the director of an educational centre for school-aged children.
It is this story and others like it who have followed the programme that spurred Peter and Sandy into action.
At £10,000 Sandy thought they would never be able to afford it but with the support from friends and family, they have managed to raise more than £4,000 in the last three years.
They have another £6,000 to raise and are flying out to Boston in August for a two week training course so they can start to work with Joe at home.
The course involves copying exactly what the child is doing – even if that means rolling around the floor.
Peter said: "The things that motivate Joe are not necessarily the things that keep other children motivated.
"Instead of him sitting there doing something he should be doing, we need to encourage him to do things he prefers."
Some of those things can include Joe walking around all day flapping a book rather than reading.
But the worst thing the family could try and do is to sit him down and read it – he just would not do it.
By copying Joe's actions the theory is that he will eventually start to copy their actions so he can communicate and hopefully speak when he realises that speaking will generally get him what he wants.
The programme also aims to make him eat properly – at the moment he will go for a few days without eating and even then it is usually mince. In America the programme offers only a vegetarian menu.
To communicate Joe will grab hold of someone's hand if he wants something and, for example, lead them to the fridge if he is hungry.
Peter said: "The problem is opening the fridge door is as far as it goes for him.
"We have to get everything out for him or touch everything until we get to the thing he wants.
"I once opened a whole packet of biscuits for him and then he decided that he did not want them."
Although he will sometimes become aggressive with other children who make loud noises, Joe is not really a violent child.
Sandy said: "At one time he would not cuddle me or anything but now he is quite affectionate, it would just be nice to hear him say a few words.
"About three months ago when we were going out together and he ran to the door and said 'mum'.
"It was lovely but he never did it again."
Before he was even diagnosed with the communicative disorder at two years old, Sandy knew deep down what was wrong with him.
From then on it has been a roller coaster ride of emotions for them and their oldest son Jake, 11.
They get immense pleasure from Joe and can't help but laugh at some of the things he does but other times his behaviour brings a great strain on the family.
Peter said: "(When he was diagnosed) It was like we had had Joe and then suddenly we didn't.
"It seemed so awful for Joe for the things that he would miss out on."
He is currently a pupil at the Sudbury Hillside school, which is a special school, but the Squirrells are in the process of trying to take him out so they can educate him at home with the help of the Son-Rise programme.
They are building a special classroom for him at the bottom of the garden, which has cost around £4,000.
It will only have windows in the roof so there will be nothing to distract him. He will only be able to concentrate on what is going on around him. Even books and toys will be up high on shelves so he has to communicate to get them.
He is a bright child, which was revealed when he went to America to swim with the dolphins. It was a strict routine where if Joe did not do as he was told he was unable to go in the water.
Eventually he was managing to identify picture cards and the teacher was convinced that Joe knew his alphabet.
But as the programme also involved some aggressiveness where some children were held down until they behaved, Peter and Sandy decided that it was not for them.
Putting Joe into residential care has also been mentioned as an option but Sandy and Peter would never consider it.
He is a tall child and strong and there are times when he has grabbed hold of Sandy and Peter has had to pull him off but they are determined the Son-Rise programme will change him.
No-one can forecast Joe's future and in ten years time, who knows where he will be and what he will be doing.
But his parents are determined that he will be given the best chance for a better life.
The Live Music Day to raise money for Joe is being held at Bloomfields, in association with Needham Market FC in Quinton Road on June 15 from midday until 11pm.
Food is served all day and a bar will be open throughout and there will also be side stalls and a prize draw.
Tickets are £8 or £10 on the day and family (two adults and three children up to 16 years old) can be bought for £20.
To book tickets contact Peter Squirrell on 01449 722808.
The family need help to build the new classroom and if anyone can help out with materials such as roof tiles they should call on the number above.