We have a wonderful 11-year-old son called Benjamin. Ben was much-wanted and is a much-loved young man and I am an "old" mum! During my pregnancy with Ben I was nursing my grandmother with cancer and lost my grandfather too, so life was very difficult to say the least. Ben is my only child and his father Edward and I totally adore him - he brings constant light to our life although we worry so much for his future.
I grew up living next door to a boy with autism who was slightly older than myself and strangely enough at my first ever charity event I collected for The National Autistic Society. Ben regressed at two years old and myself and Edward, my husband, began to realise that he was autistic. Ben finally was diagnosed with high-functioning autism at the age of four.
We were left with the worries of education, although the school were very supportive and straight away applied for a statement and Ben was lucky enough to have a one to one support worker. We wanted Ben to stay in mainstream education as he is a bright boy and although he had highs and lows, infant school was not too bad – notice the "too bad!" I ran the PTA, so was able to be in school often and my husband became a school governor, so we were very proactive.
All this changed at junior school, when after a great transition, things really fell down after Ben was badly bullied and ended up in hospital with the Streptococcal bacteria and underwent months of antibiotics. Ben was so anxious about school that after the summer holidays he didn't return and was home schooled for 18 months – he thrived and regained his confidence and eventually started his education again at Ysgol Y Gogarth in Llandudno where he is happy and has wonderful staff supporting him and some lovely friends who have autism or special needs themselves.
Because of Ben's autism we found that it was difficult for him to be accepted for himself and for us as parents not to be judged regarding our parenting skills and realised that there were so many other families in similar situations. I was fortunate that I was a board member at our local Leisure Centre where the chairman had started an adult youth club for older people, and I had a vision of how this could work for children with autism and their families. There were other opportunities for the child or the parent and for siblings as young carers but nothing for the whole family and so I approached the chairman with my ideas and together we went to visit an NAS parent group and give them the ideas for a sustainable family support and fun group. They had been involved in events that would run for six weeks and then end - our session would be sustainable and children and families would have a guaranteed 12 month commitment.
Creatasmile opened its doors in October 2009 and within a couple of months saw as many as 89 people attending one session. Ben is the reason behind the Creatasmile charity and we now have family fun sessions running all over North Wales along with parent support groups and some great day trips. We have 22 volunteers and 8 trustees, who all give their time completely free.
Because of Benjamin our lives have changed completely. We have some formed some wonderful friendships with people who are empathetic and we have lots of fun times as well as some tearful times but we have support and so do the families who come and join in our groups. Our biggest worry is our son's future – this is what most parents fear but with the help of NAS Cymru and the wonderful people there and some very positive MPs fighting for an Autism Act we are sure that Ben and all people with autism will face a brighter and more positive life.