Grainne Ashe from Belfast, was so determined to help her daughter Rose cope with autism, that she took her entire family on an incredible journey across the Atlantic and ended up becoming the founder of the first Adams Camp outside the USA.
Here, Ni4kids Mum of the Year, Grainne explains how her new venture has made such a huge impact to ten local families…
“My daughter Rose (8) was diagnosed at age four with autism and another learning disability. Like any mum I just wanted to do my best for each of my children (Grainne also has a daughter Grace aged 10 and son Rowan aged six) and after the initial shock – when the realisation hits you that the future you had planned for your child is going to be completely different than you imagined – I realised that the most positive way I could support my daughter was to spend as much time as possible finding out everything I could about autism. I was very proactive, researching all the resources available to us as a family from the NHS, Rose’s school and the local community. But we got to a stage where Rose’s behaviour was affecting almost every part of our family life. She was very affected by the environment, even the weather. Visits to restaurants became more and more difficult and trying to bring her to school on a windy or rainy day was a challenge. We soon found ourselves rarely seeing friends or socialising and I began to feel very isolated.
To try and stop that happening I went to some Autism NI support groups, which I found very useful, and any courses for parents that the autism intervention team were running. As helpful as they were, I did find it difficult to implement the strategies at home sometimes and I was also concerned that no one was actually working with Rose, addressing her issues and problems. I remember thinking at the time that there must be something else out there that I was missing.
In December 2014 my husband asked me what I wanted for a Christmas gift and without hesitation I said that the only thing I longed for was for someone to help Rose. So we agreed that wherever that took us, we would not stop until we had found them. More of my online research began to reveal reports of great success for children with autism and special needs at summer camps the US. When I came across Adams Camp the hairs on my arms literally stood on end and I had chills as I realised this was what I had been searching for.
In July 2015 my family began our odyssey to Nantucket, Massachusetts, for an amazing and life-changing week. There had obviously been a large financial cost for our two-week trip to the states and at the end I could only despair that it would most likely take another couple of years before we could consider coming again. On the last day, I spoke with the programme director to ask if there were any plans for camps outside of America, remarking how wonderful it would be if there were international Adams Camps, and of course in particular one in Northern Ireland. Her response was, ‘So why don’t you do it?’ Initially I laughed and thought it was a fantasy. How could I, a stay-at-home mum with three kids, and one who needed as much attention as Rose, even consider taking it on?
However back home again, I received an email from the founders of Adams Camp, Bob and Karel Horney, who had set up the charity 30 years ago for their son, Adam (now 36) who has cerebral palsy. It was such a big success they now run hundreds of camps right across the county and have helped thousands of families. Unbelievably, Bob said that we had been their first international family and that if I wanted to set up Adam’s Camp NI he would give me his full support. And after many skype calls and emails, he finally convinced me I could do it!
So last September I went from being a stay-at-home mum to the founder and director of the first Adams Camp NI outside the USA! I had ten short months to fundraise the £25,000 needed to ensure we could cover the costs for a camp for ten families, find a location and ten therapists willing to come to us for an entire week. The Adams Camp ethos is that it is for everyone, the special needs community of the world, but I felt so strongly that Northern Ireland families needed this, we decided, with Bob’s blessing, that our first year would be only for local families. But I was still stunned, when we started to spread the word by the response. We could have filled our places many times over, and had an extensive waiting list so we had to operate a first come basis to be fair.
Thanks to the efforts of many supporters, from our family and friends who gave most generously (we received no external government help or funding) to Autism NI who helped me spread the word to local families at outreach groups, the first Adams Camp NI took place in July this summer at Corrymeela, Ballycastle. What I love most about the experience is that it’s for the entire family. The child with autism receives intensive therapy for six hours every day, while their siblings have their own adventures, go on special trips and just talk to other kids about their own unique situations. The culture of Adams Camp is very holistic and therapeutic. It was a residential and we all opted to spend time and eat our meals together. And the parents benefit too. It’s such a relief to spend time with others who know exactly what you are going through and adults who don’t care if your child starts shouting at the dinner table. The ripple effect is that the families from our first year have become their own support network, setting up a Facebook page to keep in touch and help each other.
But of course the most important aspect is the results. Every family who attended want to enrol again for next summer as they thought it had helped their child’s development enormously. There were incredible moments, like when a little boy who had been completely non-verbal spoke for the very first time. There is a cost involved [families pay approx. £2,000 for the full week inclusive of meals and accommodation] but as one parent said, it was the best money they ever spent. To commemorate our first year, we planted an apple tree and a rose bush at Corrymeela as a symbol how wonderful things can grow from small beginnings. The dream is now to ensure we carry on flourishing, not just for my Rose, but for the many others like her.”
Find out more about Adams Camp NI on Facebook or at adamscamp.org/our-programs/adams-camp-northern-ireland
Image caption: Grainne receiving her Ni4kids Mum of the Year Award with Rose and Adams Camp NI patron, playwright Martin Lynch