I’d to re-mortgage home to help my autistic little boy
Belfast mum Kellie Foley says that early help for her two-year-old son Ethan produced some astonishing results.
Kellie Foley says she fears children with the symptoms of autism are not being diagnosed early enough and are loosing their most effective years in combating the condition.
Kellie has funded her son’s treatment privately, but says she fears other parents may not be so fortunate.
Kellie and partner Mark Jones first became concerned about their son Ethan when he was about six months old: “Ethan was silent. He made no sounds, no attempt to form words.
“There was no laughter. His behaviour was very worrying. He would repetitively flap his hands and began ‘tip-toe walking’.
“When I left him in day care he would often sit all day staring at the wall, with his back to the other children.
“He would become highly distressed and aggressive when approached by staff and other children alike, resulting in sometimes biting himself to the point where he drew blood and banging his head off objects,” she recalls.
Kellie says that as the months passed Ethan’s condition got worse. He had started to spin on the spot, his eyes would shoot to the side, his diet became very limited and he would only sleep at night in fits and starts.
She says the health care system did not provide the support she needed. By the time Ethan was 20 months old, a speech therapist who she had engaged herself said his communication skills were that of a child less than half his age.
“I had so many questions and no one seemed to be able to give me any answers.
“I turned to the internet and began to read about autism, which is a condition which disrupts the development of social and communication skills.
“It said that while there is currently no cure for autism, early diagnoses
and appropriate treatment can in many cases greatly improve the quality of life for the person with the condition.
“More worryingly I found out that the NHS will not consider making a diagnosis of autism, much less treat the condition, until a child is three years old. I was frightened for Ethan and felt very alone,” she says.
It was the speech therapist’s comments which helped turn a corner.
“Her negativity floored me, as someone who was an expert in her field, as she agreed with me that Ethan had become locked in his own world.”
Kellie had read about a programme run through the Centre for Early Autism Training (CEAT) (Northern Ireland), known as Applied Behaviour Analysis, which provides the early treatment which some experts advocate.
“The people there were very calming, and understood completely what my family was going through.
“They simply told me they would be able to help. That was the first time I had heard those words!”
CEAT designed an individual programme for Ethan. It involves Ethan receiving one-to-one work with therapists in his home. It focuses on his communication and interaction skills, breaking them into small tasks which are then taught in a structured way.
“I had to undertake training to support the work of the therapists. As a co-owner of Regency Press, I knew I would need the support of my colleagues, but then they all asked if they could do the training too, so that they could help me with Ethan. We all undertook the training together,” Kellie says.
One year and two months on, and Kellie describes the results as miraculous: “Ethan has started to speak and is communicating with us.
“At 20 months I was told he had the communication skills of a child half his age. Now as he approaches three years old he is talking at a similar level as other children his age and he plays imaginatively with his toys.
“He has even learned to read words and count to 100, not that these were specific targets in his programme. It is like once Ethan had learned how to learn, he sought out opportunities to learn more and more.
“We can now see he is a very bright child and is learning very quickly.
“My aim is to send him to nursery in September, and for a therapist to go with him. I want to get him to the stage where he is ready to take his place in a conventional primary school.”
The EIBI programme is not recognised by the National Health Service nor the Education Departments in the United Kingdom and there are many who remain to be convinced of its value.
Kellie says: “I know there are those who have their doubts and I would urge them to look at the progress of local children who are on the programme.”
All this comes at a very hefty price. A recommended two-year intensive programme of Applied Behaviour Analysis Behaviour will cost thousands of pounds.
Kellie says it should be available to the NHS. She and her family have had to fund the programme themselves.
It has involved a lot of sacrifice. “I am not a rich person and could by no means be described as ‘comfortably well off’. I have had to forgo some of the luxuries of life.
“A better house or home improvements are not on my agenda. I have more mortgages that I care to think about.
“My friends at Regency seem to be almost as driven as I am. One of my co-owners, Johnnie Jonston has a band called the Ruby Cortinas and he has been gigging in venues around Belfast to raise funds and awareness.
“I have been very lucky. I am very driven and we have good friends who have gone beyond what anyone could have expected.
“But what about other parents who could not even think of taking on such a debt? Their children should have the same opportunity,” she argues.
Early warning signs
- The Centre for Early Autism Training (CEAT) was established in 2003
- It offers home intervention, school, community and professional training services
- Children with autism display it in their understanding and use of language
- They often dislike or resist physical contact and seem to isolate themselves from those around them
- They also display behaviour that is repetitive, extreme and limited in imagination
- For more information tel 028 9082 3625 or email firstname.lastname@example.org