I am a mother of two children, a little boy and a little girl. My son has ASD, CVI and dyslexia. I am his carer, his safe space and his advocate. Plus all the other things a mum is to her children. When I had my first baby I was so excited to hear his first words. He didn't speak until he was 4. I was so excited to bring him to groups. He didn't want to play in the same way. He didn't join in songs, he would run away.
My fantastic boy, who could sort dinosaurs into herbivores and carnivores, who I taught makaton so he could communicate with me, was different to his peers. When people spoke to him, he didn't speak back, as his issues were invisible, people didn't quite understand him. It was an incredibly isolating experience. Throughout that time all I wished was to be able to find someone who understood, and luckily when my little boy started school we found that. Until that time the time we had no one really who understood, it took 6 years to receive a diagnosis for Autism. Which I have now come to realise is relatively quick.
It did make me think about all those families that may not be so lucky, who didn't know where to look, didn't know how to make their voices heard. This is when the idea of Extraordinary Links started developing.
While researching my idea, I came across some research by SCOPE, which contained some rather shocking statistics (in my opinion!)
1. 37% of families with a disabled child were on some kind of income related benefit (only 12% of families with no disabled children had the same benefit)
2. SCOPE estimated that the extra costs for disabled people was roughly £500 a month, with 1 in 10 spending an extra £1000 a month.
If you couple all of this with an increase in the cost of living, it would be safe to say that raising a child with a disability is not only more expensive, but likely to push a family into real poverty.
Due to this, my idea changed slightly, I did not want money to stop people from being able to benefit from a group that I mean to ease there worries.
I decided to provide a free safe space for disabled and SEN (Special Educational Needs like Autism, ADHD, Sensory issues ect) children to be themselves and play. A space for their families to find support and create extraordinary links.
This is where you lovely people come in to play, I need your help to help others. Help me to create a safer and fairer community for children like my son, and families like my own.
Eventually I would like to rent a premises which could provide advice for parents, specialist literature parents can borrow to help, a permanent space for disabled children to play, and for parents to meet and have a natter.
To start with, I am content to help as many families be guided in the right direction, loan literature that may help and let the kids have a good time!