Without the foresight of Daisy Chain founder Lesley Hanson to set up a haven for families with children on the autistic spectrum 15 years ago, Dianne knows she and her family had virtually nowhere to go.
“I was once told to leave a park with my son because someone thought he should not be allowed in. It was a very lonely life before Daisy Chain,” says Dianne.
When son Paul, now 15, was born, Dianne quickly noticed he was different from his older sister Natalie. “If I pointed something out to him he would look at my finger rather than where I was pointing to. I went to the library and started reading up on autism and pretty much diagnosed Paul myself. The health visitor was in agreement that he could be autistic. It was a very hard time to accept life was going to be different.”
Dianne and partner Roger got little sleep and Dianne explains, “I lost friends because I couldn’t join in conversations about what their toddlers were doing and I was so exhausted. During the day when Natalie was at school, it was just me and Paul until I found Daisy Chain. I was invited to the farm, made a coffee while someone else looked after Paul which had never happened before. That was it for me, Daisy Chain was the ladder I needed to climb out of that black hole.
“I didn’t know there were other parents in the same position as me until I found Daisy Chain and discovered I was not alone.”
Dianne recalls that at that time there was little more than a sofa in the farmhouse. “We had to carry in more chairs when we had the Links parents group meetings and it was there that I met friends that I still have today. Friends who would invite Paul to parties for birthdays because up until then no-one else did. The support of Daisy Chain and the other parents was and is amazing. Learning coping strategies really helped me and made me feel I could cope.”
Natalie, who is now at university studying accountancy, joined the Sibz group and Roger did the Great North Run to raise money for Daisy Chain.
“When Paul found it hard to accept what happened on activity days and rules that needed to be followed, they introduced a specialist activity day for children more severely affected by autism and that was great because through that Paul learned to accept the rules and he could then access the regular activity days.”
Dianne went on to work more closely with services in Stockton through Stockton United for Change (now Stockton Parent Carer Forum) and through the Autism Strategy Board to work with parents to help shape the services needed.
Paul has started to speak in recent years, he loves his Ipad, old videos particularly comedy, theme park rides and waterparks as well as cooking and Dianne can see how far she and her family have travelled.
“The day we were asked to leave the park because Paul stims* was a very dark day. When we found Daisy Chain, a place where we could go without anyone judging us and a place where the staff are amazing and listen to the parents, it became my lifeline. I have always felt included there and I hope lots of other families will too for the next 15 years.”
*Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in autistic people/people with autism spectrum disorders.