Jo Worgan is a current events reporter for Autism Daily Newscast. She has 2 sons, her youngest son Tom, aged 5, has Autistic Spectrum Disorder (ASD).
When I read about the new section ‘Profile in Brief’ celebrating the unsung heroes of the autism world, I immediately thought of my friend Lucy.This is my personal tribute to her.
I know that she will read this under the cover of darkness and tell me that she is ‘just a mum’ and does not want any attention but she is so much more, this lady in all honesty saved my life.
Lucy has three boys aged 8, 5 and 3. Her eldest son has Asperger Syndrome. Lucy has used all her knowledge, skills and natural ability to put people at ease to help and support other parents who have children with additional needs, primarily those who have children on or suspected of being on the autistic spectrum and who are starting on their autism journey.
Lucy is Chair of the Governance Board at Lune Park Children’s Centre, Lancaster and is also the parent representative of the AOK group situated there which is for families who have children with additional/special needs. This is where I first met Lucy. She was the first parent whom I spoke to about Tom and she totally ‘got it’, she understood where I was in my life at that particular moment. That I was confused, frightened and coming to terms with the fact that my little boy was autistic and that I was desperately seeking help and support for Tom and my family.
I actually feel quite emotional writing this as lots of memories are flooding back to me about those very early days; Tom was 2 when I first met Lucy. Without her help and support and that of Tricia Wilkinson, the special needs outreach worker, I dread to think where we would be now. I honestly think that we would be in a very dark place indeed. Early help support and intervention is vital.
As well as volunteering at Lune Park Children’s Centre Lucy is also involved with the group North Lancashire Directions Group Parent Carer Network (NLDG). She runs the Facebook group and twitter feed, hosts the NLDG website which offers a wealth of information and helps to set up and host the annual NLDG Parent Carer event based at Salt Ayre. This s where different organisation who support children with any additional need come together to share information.
What I want to convey is that although Lucy lives with the daily ups and downs of autism she still helps others. She very rarely gets more than 2 hours sleep a night but she still signposts others to information and support, attends meetings with parents as well as offering a listening ear.
When I first mentioned to Lucy that I was going to write about her after her initial comment of ‘me?’ She then went on to add this very important point.
“There is lots of really useful information and amazing support groups out there for parents to access. The only problem is there are still many professionals who don’t know about them or fail to signpost parents and Carers to them. After my son was diagnosed at the age of 3 and a half I was handed an NHS booklet on Autistic Spectrum Disorders and told to wait another 6 months for my next appointment. I didn’t think this was good enough. So to stop other parents going through the nightmare of not having anywhere to turn, I try to help them by using my own experience and knowledge of the fantastic local support groups in our area. I wouldn’t be able to signpost anyone if I hadn’t had amazing support from my local children’s centre who continue to be an irreplaceable resource for me and my boys.”
A lot more needs to be done to get information ‘out there’ to parent caters and for all professional to access and know what information is available. Most importantly they should all work together.
Thank goodness that there are people like Lucy, using their own knowledge and personal understanding to help others. She truly is a very special lady and I thank her, from one mum to another.