Mums call for One-Stop-Shop
I recently met five mums whose friendship sprang from a shared experience, they all have a child with autism and like any parent have anxieties and hopes about their child’s development. But, they are also acutely aware that their child’s home and school environment, and the way that they interact with those around them, will have a huge impact on the way they see the world and how they cope later in life.
|Amanda Dowsett, Kerra Hancock, Sam Tancock, Tina Chapman-Dalley and Anna Hills, sharing their experiences bringing up children with autism over a cup of tea at Trevoole Farm in Praze an Beeble|
The women came together, creating their own informal hub, to better understand their children's unique behaviour, but despite their pro-active approach they still find themselves second guessing their child’s needs. “I had to find out everything myself,” said Sam Tancock, whose son, Neo, was diagnosed with Aspergers 12 months ago. He was referred to a paediatrician which meant a trip to Plymouth because she was told there is no assessment service for children over 8-years-of-age in Cornwall.
She said: “Neo gets anxious and finds it difficult to maintain friendships. I spoke to his teachers and they had no concerns because he was doing well educationally, but he used to sit under the table and didn’t like mixing with other pupils.
“I went to my GP who referred Neo. I was told that there was no point because the assessment service was in Plymouth. If I hadn’t been determined then we would still be struggling, trying to find answers to why Neo behaves in the way that he does. He has already learned coping strategies, and even though he has been diagnosed there is still no practical support. It feels as though you’re given a letter with a diagnosis and then goodbye, there’s no follow-up.”
Anna Hills, whose daughter Bryony, 8, has autism and learning difficulties, says her problems were spotted at a young age, adding: “When she was at nursery they thought she was deaf because she wasn’t interacting and was very introverted. Her hearing was fine but she was then assessed by a speech and language therapist because she her development was delayed. She wasn’t speaking and she was late to walk. I was doing my own research and suggested that Bryony may be autistic, but this was ruled out.”
Her diagnosis was then confirmed following a meeting with Bryony’s speech therapist, educational psychologist and paeditiatrician. Anna said: “I wasn’t told about the meeting. They said that she was autistic and told me to seek support from other parents. I made contact with the National Autistic Society and went on their Early Bird training course. It gave me much more understanding of what autism is. I now use visual aids and stories with Bryony which has made her life so much easier.
"I got so much out of the course. I watched a video on how to use illustrated cards and books with Bryony. It really helped me when it came to using them with her. We need more courses like this for parents and carers."
Tina, whose son has ASD, dyspraxia and sensory processing disorder, says more practical support is needed: "I know mums who are crying out for help, but there seem to be brick walls and blockages when it comes to getting a child statemented. There's no money in the system. If you want help at home you have to say you can't cope, even if that isn't true. There is a lack of communication between professionals and parents. We need a one-stop-shop to access services and support."
Tracey Mears, whose son is autistic and who founded the West Cornwall branch of the National Autistic Society ten years ago, says the mum’s experience is typical across Cornwall as public services are starved of funds with more people turning to charities and self-help groups for support.
She said: “I’m armed with a lot of knowledge but I still didn’t know that my son had catatonia (a condition that affects mobility). You can do huge amounts of research and never know all of the answers. Outlook Southwest is diagnosing people in the county but there is a lack of aftercare and support. There is a strategy for supporting adults with autism in Cornwall and the local authority has established the Autism Team which visits children in schools. Parents seeking information can also go to Cornwall Council's Family Information Service.”
The West Cornwall NAS runs drop-in sessions on the third Wednesday each month at Gweal an Top on School Lane for anyone affected by autism, 6.30pm to 9pm. You can call the branch on 07901103351 or email firstname.lastname@example.org
Parents can also contact the Parent Carer Council for Cornwall which runs informal meetings and events across the county it’s chief executive is Kay Henry 07973763332 email: email@example.com
Posted by Bev Coumbe
Green Light website is www.switchedoncare.com
Bev Coumbe is on Twitter @bevcoumbe or @autismcornwall