Mum Lisa and husband Dion have three children – Elliot, 11, who has been diagnosed with Asperger’s Syndrome, Lucas, 10, and four-year-old Zachary who has Cerebral Palsy so juggling the needs of all three can be complicated.
Says Lisa, ‘Daisy Chain is massively important to us – without it I don’t know what we would do.’
Until Elliot was three years old Lisa and Dion did not notice anything different about their young son, ‘He was clever and friendly but he had only ever been in small groups up until that point, he had never been in a large group environment. Then he went to nursery and I would have said that someone had switched out my Elliot and given me back a clone – he seemed to change overnight. He would be naughty, defiant and also very sad. We went to CAMHS and they said he wasn’t autistic, he was just an extremely unhappy boy.
‘An example is, Elliot hated birthday parties and if he didn’t win the party games it was game over. I came to dread party invitations because I knew it would be a horrible, stressful time.’
With a background working in special needs, Lisa suspected Elliot may be autistic but it wasn’t until Elliot moved into reception class that it was noted at school and in that year Elliot was diagnosed. ‘It was good to get the diagnosis because it helps you understand your child’s behaviour but we did then feel we were just left to deal with it after that. Elliot was very unhappy at school so he would make lots of excuses not to go, every part of him would be in pain he would say so he couldn’t go. It was a nightmare trying to get him to school. I used to love the school holidays then because we would get our lovely Elliot back.’
Now he is older, it is the holidays Elliot struggles with and the lack of daily structure. ‘He doesn’t want to leave the house. Other than going to Daisy Chain, he doesn’t want to do anything. We need Daisy Chain because we know we can safely leave Elliot there and he will have a good time. It gives us the opportunity to spend time with Lucas and Zachary doing things they want to do.
‘Lucas is so kind and caring but I feel I don’t get enough time with him. He is amazing with Zachary but sometimes they don’t get all the attention they deserve because we are so short of time. Lucas is very shy and he won’t go to any after school clubs at all except for Sibz Club at Daisy Chain which is really good for him. I think Lucas may feel that he is in Elliot’s shadow because Elliot is so clever but Lucas has to work harder which is why being able to attend a club for siblings and have his own space and time in Daisy Chain is so vital.
Juggling the needs of the three young boys while coping with Elliot’s autism, can be physically and emotionally exhausting. Lisa explains, ‘Elliot has no concept that Zachary is just four years old and has a disability so he will hit out at him. Zachary has no sense of danger so Lucas will step in and lock them both in the bathroom so I can work with Elliot until he calms down.’
Elliot attends Daisy Chain every second Monday for Chill Club and he participated in the first Outdoor Adventures Club in the summer holidays. ‘It can be hard to get him there but once he is there he loves it. We just wish he could access even more because that respite is so important for us to give some special time to Lucas and Zachary.
With young Zachary, the couple noticed he was not using his right arm very much. ‘He was just four months old and we joked that he must be left handed but when I mentioned it at one of his weigh-ins we were referred to hospital very quickly.’ Zachary’s Cerebral Palsy was confirmed after and MRI scan at 18 months and the couple were devastated to discover the amount of damage to Zachary’s nerves. ‘Essentially we were warned that he might not even walk or talk but Zachary is very determined and he won’t let anything stop him.
‘He can copy Elliot’s behaviour but he has his own quirks and he is getting harder to manage, he is always up to something and very rigid in his behaviour but we have been told it may be four years before he will get a diagnosis.’
Lisa admits that far from loving school holidays now, she can dread them and feel depressed especially in the long summer break. ‘My life comes to a stop then except for having Daisy Chain. It is our sanctuary.’