Adams Camp Northern Ireland to offer families hope and help unlock their autistic child's potential
The family bringing a innovative American therapy camp to Northern Ireland have said it won't provide a cure to children with autism, but will give their parents hope.
Grainne Ashe’s daughter Rose was diagnosed with autism and moderate learning difficulty at the age of five.
But from an early age the Newtownabbey mother-of-three knew her daughter had difficulties.
“Grace was our first child,” said Grainne.
“And she was your typical child, meeting all the milestones in and around the usual time for a child.
“But Rose was different. She was very placid, never demanding and very quiet.
“She would sit in the same place and not move. She would not play with the toys around her and obsess with a piece of plastic or card and play with it for hours.
“We never thought anything at first, we just thought it was normal and every child was different.
“Then we started to wish she would ask or demand for more, or just explore a little.”
'Rose got very frustrated at not being able to communicate and would break out in screams'
Grainne continued: “And she didn’t like to go out.
“She would cry and scream, put her fingers in her ears and bury her head in her coat. She would even put her coat on back to front so that the hood covered her face.
“She would scream so loud I would have to abandon whole trolley loads of shopping in the supermarket.
“At nights it would take time to settle her and then she would wake screaming in a trance-like state and she could not be consoled for hours.
“We would end up watching television for hours.”
Grainne continued: “We thought she was shy, but we soon learned that she was sensitive to noise, fluorescent lights, car horns - that type of thing.
“It was horrible for Rose, she was a very anxious child and only happy in her own house, in her own environment, with own family.”
Rose began speaking at around 10 months old. Just “mama” or “dada”, but that stopped and soon the child would scream for things.
Grainne made books of pictures of almost any every day item and Rose would use them to point to what she wanted and for her mother to use to explain where they were going and what they were doing.
Grainne continued: “We attended a speech therapist when Rose was two and the therapist said it was the youngest patient she had.
“We needed help communicating with Rose. It was obvious she was getting very frustrated with being unable to talk.
“So she taught her Makaton sign language.
“That was very difficult, as it was hard to explain to family and friends that this was how we communicated.
“People would ask ‘but why, she is not deaf?’ but it was the way we had to communicate.”
'We were more concerned with her social skills development than her educational achievements'
At the age of three Rose was diagnosed with moderate learning disability with possible autism.
Given how Rose was a very tactile child - good with eye contact, hugging kissing and not aggressive - it was not until the the age of five autism was confirmed.
From there she received 12 weeks therapy which amounted to one hour, every other week with either an occupational therapist, physiotherapist or speech and language therapist.
And when she started school this reduced to one hour therapy every three months, although she had a classroom assistant.
“We fought hard to keep her in school despite teachers suggesting she may be better suited to a special educational needs school,” Grainne continued.
“They were concerned they were not able to dedicate the time to Rose that she needed.
“We just felt that Rose was a gentle sensitive child and that - as lovely as special educational needs schools are - they have children with so much more needs and challenging behaviour.
“We were not worried about her educational achievements, we were more concerned about her integrations and social skills development and it has made a difference being around her brother and sister and having all her friends nearby.”
'Rose had so much potential, I just wanted someone to help bring it out'
Two years ago Grainne’s husband Anthony asked what she wanted for Christmas.
The answer, "just something to help Rose".
“I felt she had so much potential and just wanted some one to help bring it out,” said Grainne.
After much research the family came across Adams Camp.
It was set up in America 30 years ago by Bob and Karel Horney, for their son who has special needs.
From its small beginnings in the foothills of the Colorado Mountains, it has grown over the years providing its therapy programme to many hundreds of families in North America.
It offers intensive therapy for children with special needs and, importantly, offers support services for their parents and siblings.
And the Ashe family became its first ever visitors for outside American soil to land at one of its camps in July 2015.
Grainne said: “It immediately appealed to me. Rose may have the autism, but it was controlling our family.
“The camp offers intensive five days of therapy, with five therapists in the room with five children.
“You set three goals and they work tirelessly to help you achieve them - even texting you early in the morning to make sure you are using the right words and phrases in an attempt to break the old patterns.
“But also there is respite for the parents and camps for the siblings.
“We would have a lot of guilt because we have to dedicate so much time and energy to Rose that Rowan and Grace are - to an extent - neglected.
“But during our time they were able to spend time with other siblings with brothers or sisters who are similar to Rose.
“And we all made close bonds with everyone there - even though we were the only foreigners.”
'Our family were amazed at the transformation the week at the camp made to Rose'
Grainne continued: “It was a tough week, there are lots of challenges and a lot is asked of you.
“They tear you down to build you back up again.
“But if you want to see changes, you have to be prepared.
“There was a difference in us all, but Rose changed before our eyes.
“It was very tough for her, but in five days she progressed more than in five years.
“And we learned so much about her and how to interact with her.”
Grainne continued: “I learned she responds really well to music and now we sing and dance with her every day, no matter who is about or where we are.
“You can’t compare the services in Northern Ireland to what we experienced. It is very different.
“But it shows you what would happen if given the right encouragement and strategy how anyone can shine and become the person they were supposed to be.
“Rose was given the self-belief and confidence to break out of her rituals that were holding her back from becoming a beautiful girl.
“Every now and again you feel the routine slipping and the old patterns coming through, but you just have to take a step back and remember what you learned at the camp.”
During the camp Grainne expressed her frustrations that it was so far from home and how there would be many who would benefit from a similar set-up in Northern Ireland.
She has set up Adams Camp NI, with the help of its American founders, and established a board including Arlene Cassidy of Autism NI and playwright Martin Lynch - who is also Rose's great uncle - as its patron.
And its first camp will be held this summer in at Corrymeela in Ballycastle.
It will follow the same routines as the American version except there will be a full residential for those attending with some of those involved in the American model taking part in Grainne’s camp.
Grainne added: “I first dipped my toe in the water with a blog and a Facebook page to see if there was a demand and the response was phenomenal.
“The camp give you an amazing boost and brings out the potential in children.
“We now have a more mature, able to cope, happier little girl.
“And we hope to build on that at our camp.
“But it is important to stress, it’s not a cure for autism, but it gives parents the hope they can unlock their child's potential.
“And we are certainly all the more happier for our experience.”
Grainne and her family are holding a series of fundraisers to help pay for the therapists and the related training needed for the model.
Belfast Telegraph Digital