Brody is a lovely, funny five-year-old who loves music, especially Take That, singing and building with his lego. He has autistic traits and does not like any changes to routine or loud noises. Brody is taking part in the 100,000 Genomes Project.
We realised that things were going to be different when Brody was six months old. Brody has significant difficulties with his learning,Global Developmental Delay, hypotonia,hypermobility, anxiety caused by unfamiliar situations,rigid and controlling behaviour. His autistic spectrum behaviour and mobility issues mean he needs his wheelchair.
Having a child with additional needs means you have to constantly shout to make yourself heard and you have to be proactive in order for things to happen. I have had to go out and research to get Brody support to help him.
It’s difficult to know what the future will be for Brody. A diagnosis would help explain why things are the way they are and help us to find other children like Brody who are further down the line and see their outcomes.
It is hard to plan without a diagnosis. There is also a lack of empathy and understanding from the general public who can be very rude and judgemental.
The best thing so far on our journey is seeing the progress Brody is making; his biggest accomplishment to date has been taking his first unaided steps.
SWAN UK has given me a sense of community, as I have been in touch with other SWAN UK members discussing our children and swapping stories. We feel hopeful about the future.