Why I wanted to support other families
Our wonderful Bill was born a happy, big, healthy boy in 1997. He was all me and my husband Paul had hoped for.
At the age of 3, Bill was finally diagnosed with Autism and a speech and language disorder after months of assessments following our concerns of his delayed speech and unique behaviour. This started us on our journey into a world of Autism.
Bill had a wonderful start at the Jeanne Saunders specialist Preschool Centre which was a fantastic grounding for us all to understand Bill’s needs. This early intervention and understanding was a godsend, as we were all very confused and frightened with this new life, we found ourselves in.
Bill’s move to mainstream reception class wasn’t as smooth as we had hoped and the different level of understanding to Bill’s needs in mainstream school became very apparent. This is where my life really changed; I realised battling, negotiating and working closely with others was going to be my new take on parenting and supporting Bill.
In 2003 we went on our adventure of a lifetime, travelling around France in our camper van for the whole of the summer holidays. Two weeks into our adventure, up a mountain, miles from anywhere, Bill had a massive seizure. He had never had anything like this before and he was rushed to hospital for tests and was diagnosed there and then with BRE (Benign Rolandic Epilepsy). For Paul and I it was just incomprehensible that our darling Bill had another condition he had to learn to live with and understand in his young life.
I was angrier with this happening than when he was diagnosed with ASC as I felt we could embrace his Autism and learn skills to be the best for Bill, whereas the Epilepsy affected his health and to a point was out of our control. Our lives completely changed.
Bill has taught us so much and has been a real inspiration to me personally. Having to guide Bill through school and life inspired me to support other families in the same situation as us. This is why I started the support network mASCot.
I felt very isolated and started to meet people along the way who also had a child/children on the spectrum or with related conditions and they felt the same. We were all struggling and trying hard to navigate our way through the system as well as trying to be the best parents possible.
By bringing us all together and giving us a safe confidential environment I created a lifeline for parents. This is how and why mASCot started and 16 years later we have 1400+ members and are growing daily.
We have many parts to mASCot. From supporting each other to providing activities workshops and courses for parents, the children and the whole family, as well as working closely with the LA, CCG, schools and services to make B&H a more inclusive, tolerant and understanding place, to live, learn, and grow up in.
Meeting and helping other families helps give me the strength to stay strong for Bill and my family. It has been a bumpy road for all of us and very hard at times for us and our wonderful supportive family. But throughout all this Bill has been so happy; he has taken everything in his stride. He has shown a lovely strength of character which he has carried through to adulthood.
Bill is now 26 years old and working and playing hard, he has a fiance and they have a flat together. He still needs a lot of support but is living an independent full life, we are so proud of the lovely young man he is. It is wonderful to see many of our members young children grow up and become as independent as they can be and it is lovely to meet all the new young families joining up, we will carry on supporting each other and pushing for change.
"When I was younger I was looking for this magic meaning of life.
It’s very simple now.
Making the lives of others better, doing something of lasting value.
That’s the meaning of life, it’s that simple."