Carole explains, ‘Samuel learned differently. He would not interact at toddler groups, he didn’t like groups with noise and clapping, he didn’t like being around other children and would constantly move away from them. Everyday life was a challenge for him and for us all as a family.’
After overcoming an early speech impediment, Samuel, now 10, became very articulate. ‘It was clear he was very intelligent but found social situations a struggle,’ says Carole. ‘He hated being in crowds and when he is anxious or his emotions heightened in any way he runs around so we had to keep tight hold of him when we went shopping, for example. He would run away or find a quiet space, sit down and refuse to move.’
But it was when he started nursery school, the issues were highlighted in sharp relief. ‘Samuel wanted to do what he wanted to do and he hated going to school. It got worse when he started in reception class and we were torn apart agonising over how to help him. It was heart-breaking making him go to school every day, knowing he hated it. I had very little knowledge of autism. I thought of it as children with classic autism, being non-verbal, displaying more extreme challenging behaviours and having learning difficulties. At first, I couldn’t believe that Samuel could be autistic, he made eye contact and talked well.’
However, it dawned on Carole that although he would make eye contact he would only do so when he was not anxious and felt relaxed and comfortable with the person he was with. ‘There were clues along the way but it wasn’t until I reflected that I realised they were there. Samuel would avoid social situations that made him anxious, he would just pretend to faint and lay on the floor. He also hated lining up outside school and trying to get through the door with crowds of children. It was hard for us as a family as Samuel would come home from school and let out all the pent-up frustration, anxiety and anger he had tried to keep bottled up during the day.’
Samuel was diagnosed when he was six years old. ‘But that was that, I was left asking where to get help,’ she explains. ‘They told me to get in touch with Daisy Chain so I did. I had a long list of challenges.’ To Carole’s relief she was told by Laura the care worker they had seen it all before and could help. ‘Laura was so calm and confident, I had never come across that before. I could get strategies to help with Samuel’s behaviour, strategies to use in school, visual aids to help him understand and learn. I felt like an enormous lead weight had been lifted off my shoulders, I felt for the first time there was someone who understood.
‘I went home and emailed my husband, I still feel emotional about it now. I just wrote that I had been to Daisy Chain, listed all the challenges we faced and that they have the answers. It was a huge feeling of relief that we could find a way through this, we could deal with it. It was hugely empowering and we have not looked back.’
Carole accessed The Links parent support group, ‘It’s so supportive, meeting other parents who have similar experiences. Sometimes it’s the small things that make a big difference – saying Samuel could not put his socks on and someone suggesting try seamless socks. I didn’t even know they existed but they worked.’
Samuel attends one of the social clubs which he loves. His older brother Dylan,13, has built up a better understanding of Samuel’s autism by attending Saturday activity sessions with him. ‘Daisy Chain has been a lifeline to our family, says Carole. ‘Through the care, dedication, expert education and support provided by Daisy Chain we all understand so much more about autism. With education comes acceptance and a belief that no matter how difficult life becomes there is always a friendly face at Daisy Chain to help.’
The family live in Ingleby Barwick and Samuel now attends Yarm Preparatory School where he is flourishing and particularly enjoying music. He says he is now ‘proud to be autistic and it doesn’t make him any better or worse than anyone else – just different’.
Carole adds, ‘I was so proud to hear him say that. Daisy Chain is a place where you feel accepted. Samuel could pretend to faint and lay on the ground and no-one batted an eyelid. He has always loved coming and it is somewhere we can all do something together as a family. We’re very lucky to have Daisy Chain here in our area, in our lives – not everyone has a Daisy Chain.’
30 October 2017
Picture: Dylan, Samuel and Carole