Living with autism Emma and Hector The road to an autism diagnosis and to Daisy Chain has been a very rocky one for Emma, husband Vladimir and their 8-year-old son Hector. Emma had a difficult pregnancy and Hector was in a special care baby unit for some weeks. When he came home, the family found it hard to cope. Mum Emma says: ‘He was the most beautiful baby but he could not feed or sleep and he cried all the time. We were at the doctors every week. It was like we were neurotic parents but we weren’t – we knew something was wrong.’ Finally, they managed to get a referral to James Cook University Hospital where they discovered Hector had a chronic urinary tract infection, severe abdominal reflux and kidney problems, ‘The consultant was wonderful, she understood all our concerns and said together we were going to unravel Hector like a ball of wool and get to the bottom of his problems. It took 18 months of treatment to deal with the physical problems,’ Emma explains. ‘I always knew there was something different with Hector but I just didn’t know what. I felt that no-one could see it. You could put him in one place and he wouldn’t move. He didn’t want to play, he was very passive, total avoidance. It felt like no-one had ever seen a Hector before and because he was so quiet I felt like he was being overlooked. It was a really challenging time.’ Eventually at the age of three Hector was put on the pathway to diagnosis and at four-and-a-half it was concluded with diagnoses of autism spectrum disorder, global developmental delay, sensory processing disorder, anxiety and selective mutism. Emma says, ‘It is very difficult for Hector as he can’t ask for anything he needs such as a drink or to go to the toilet. Also, the sensory processing is so hard for him. When we sat down with the professionals and they could see his difficulties, see the son I saw, it was very emotional. I was sobbing and shaking. Hector has intensive therapy in blocks and that is amazing, like magic – he couldn’t even go on a swing before or step off a kerb because he has no sense of where he was, his space in the environment. He is so much more confident now.’ Hector has had one-to-one support from a member of the Daisy Chain care team. Says Emma, ‘This was exceptional and is a facility we would definitely recommend and use again. It enabled us to work on strategies and, as a team, implement them. It was delivered in an appropriate way and its benefits have been huge, it was wonderful. The level of specialised input outweighed anything offered to us by other professionals who clearly had no understanding of autism. This could be a lifeline for many more families.’ Hector has also now started attending a regular Daisy Chain social club, ‘Hector loves that. I feel safe leaving him at Daisy Chain because the understanding and knowledge is autism specific.’ The family have also attended The Links parent support group and autism courses run at Daisy Chain. Emma and Vladimir are a strong team, supporting Hector. Emma adds, ‘It’s been hard but I wouldn’t change it. We don’t have a large family so child care is difficult which is why Daisy Chain is so important to us – for Hector to have somewhere to go where he is understood and his needs can be specifically catered for. Our son has taught us to live life to the full – he makes us do that because that is exactly what he does. He has to face so many challenges and overcome them but he keeps going and so do we. He is amazing – a true inspiration.’ Emma is a strong supporter of Daisy Chain, understanding that families affected by autism will need individual support that will change throughout the various stages of life – in fact so much so that she and husband Vladimir even zip wired off the Transporter Bridge to raise funds.