Dear parents/carers affected by Autism Spectrum Disorder,
First and foremost, I would like to say thank you. Thank you for letting me (and Daisy Chain) be a part of your journey, whether you are beginning the long battle of the diagnosis process or you have had your diagnosis and are trying to make sense of what to do next in the world of autism services. It is an absolute pleasure as Daisy Chain’s parent advisor to listen to your incredible stories. I believe you are all doing absolutely everything you can to support and nurture your family.
I know just how overcome your days can be with the challenges of living with a child or adult affected by ASD. The days that seem like a constant battle just to get the support your child is entitled to, and then those magical days when you get a smile, a little more eye contact, the babbles turn into a word, they use the toilet independently, they nibble a new piece of food – those are the moments you treasure. Being a parent of someone with autism truly is a full-time job. As a sister and what sometimes felt like a young carer of an older brother with autism, my heart is filled with awe and admiration for all you do.
During the one to one appointments I offer, I begin to understand your stories and how you are raising your children with tremendous love and support. I hear how you have managed to find during the hardest battles empathy and compassion, love and acceptance, patience and understanding. I see your smiles and how proud you are of your amazing children for each obstacle they overcome. I also see your overwhelming tears when things get too much and for too long you have held everything together for your family. It means everything when a parent shares their story and all of the ups and downs that come along with caring for someone with ASD.
I would just like to say it is OK to be angry, it is OK to feel overwhelmed and that the weight of autism is too much to carry sometimes. It is OK to not be OK. Everything you are feeling is OK. It is OK to celebrate that achievement that may seem small to the world but is enormous for your family. It is also OK to ask for help and here at Daisy Chain, we would like you to be empowered by knowledge and know where to turn when you need support, or where to turn to get involved in activities suitable for your children and families. This is why I have tried my best to find out information about the services and support that is available in your borough. Please find service information (which may not be exhaustive) within our Families undergoing diagnosis section on our website.