Ensuring you get the right help and support for your autistic child is both a full-time job and an emotional rollercoaster – which is why mum Beth Millican is grateful to Daisy Chain for giving her the courage and confidence she needs to make sure she gets the right support for her daughter Nikita.
Caring for Nikita, who is almost four, can be exhausting Beth explains. “Nikita doesn’t sleep very much at all even with melatonin prescribed by the paediatrician and she is very active, hyper at the moment so it can be hard at times which is why we love having Daisy Chain to come to.”
Nikita is also very sensory so Beth and partner Stephane have to keep doors locked, stairgates closed, “She will even get into the washing machine so that has to be locked,” says Beth. “Nikita was attending a mainstream nursery until recently but she wasn’t coping even with one-to-one support. It was a large nursery and she was getting overstimulated and would throw furniture about. I was having to collect her early on a daily basis so in the end we took her out. We hope she will go to a new nursery in September and we have deferred her reception class for a year as she is just not ready for it yet.”
Beth had a difficult pregnancy and had many weeks of enforced bed rest before Nikita was born four weeks early. Although she hit her early milestones, the couple noticed that Nikita wasn’t developing her speech. “At two-and-a-half she was still non-verbal so we were referred to speech and language therapy. There was an 18-week waiting list before Nikita was seen and then at her second appointment they said they thought there was signs of ASD. We have been told it will be 2021 before we can get a diagnosis.”
Beth began to attend Daisy Chain parent support group and Nikita goes into the crèche while she is there. ‘It’s very helpful to have other parents to talk to and experts coming in to give you information. It gives you the understanding of what should be happening and what support you can get which gives you the courage and confidence to deal with services and ensure you get what you need for your child.
“It’s also a safe haven for both of us. As soon as we pull into the car park, Nikita knows what she is there for, she really loves the soft play. It’s great to be able to have somewhere that you are with other people who have the same struggles and issues and you have people you can talk to when things get on top of you. We have to live in the now and not think about the future too much or it can be very emotional. Stuff doesn’t go to plan on a day by day basis.”
Beth believes Daisy Chain is a fantastic resource and through the information and advice she has received she has been on a number of courses to understand ASD – she’s even undertaken Level 1 Legal Training for parents and carers of children with special needs. “It all helps my understanding of what Nikita’s needs are, what she is entitled to, what schools should be doing. Sometimes it does feel like you have to fight for everything, it shouldn’t be like that but that can be how it feels a lot of the time.”
Beth, 27, lost her mum when Nikita was seven months old, and Stephane’s family live in in the South. Apart from Beth’s sister who provides a great deal of support, there is little respite for the couple so she says Daisy Chain has a major impact on their lives.
“My sister is fantastic and very supportive and Daisy Chain is such a safe and controlled place for Nikita where everyone understands her needs. All the parents and staff understand so you don’t have to be worried about what other people might be thinking as you do in mainstream environments. People would want to know why she still has a buggy or a dummy and it’s not nice. Daisy Chain helps you overcome that, I don’t care what other people think now – my daughter needs support and understanding and with the help of Daisy Chain and other organisations, I can make sure she gets it.”