Autistic children being ignored
Autistic children being ignored
There is a total lack of support for children with autism their siblings parents and wider family. To understand how an autistic child communicates with them and the wider world and the intensity of meeting their demands. The lack of support to enable the family unit to have time to not only look after the child / children but also to have time to care for their own mental health and support other non autistic family members. This is particularly in children under 5 I had no idea what it was like to have autism especially nonverbal until it happened to my Granddaughter who is a delightful 3 year old who cannot communicate with us, eats everything except food, has such an enquiring mind but is uI had no idea what it was like to live with a child with autism until it happened to my Granddaughter. The frustration for her and us as a family not being able to communicate and know what she’s feeling or wants is so hard. She is bright and has an enquiring mind scales cupboards empties everything out, eats everything but food so we have interesting colourful bowel movements. Taking her anywhere is frightening as she has no self awareness and it’s reigns all the way. Playing with others is a no go and that’s our pain not hers as she appears happy in her world and we are trying to accept that. Sleep is something that parents crave for anytime from 11.00 is playtime to her whilst parents especially Mum is exhausted. There is no respite or help for these children babysitting falls on grandparents which means we can’t have time out with parents. Nursery have been fantastic in providing 1:1 for three hours on weekdays which enables shopping cleaning etc as this can’t be done when she’s at home. The law states she must be in a car chair every 100 yards she has climbed out and is standing in the middle of the car making car journeys two or three times the length.
Did I understand autism no and I have so much to learn how to communicate how to train her how to build her up and reach her potential. We battle for everything and I am learning other parents are experiencing the same difficulties if we are to help our children and families we need to raise awareness and ensure funding is in place and able to focus. Scales cupboards to get what she wants, is curious to investigate everything empties everything out. Taking her out is frightening as she has no self awareness and it’s reigns all the way. Playing with others including siblings cousins and friends children is a no go! That’s our problem as in her world she isn’t aware and we are trying to learn how to cope with that. Sleep is a long gone memory anytime from 23.00 Naomi is wanting to play so often parents get 3 hours sleep a night..on a good night. Nursery has been fantastic providing 3 hours support a day which provides time for cleaning shopping and other chores which simply can’t be done when Naomi is there. The law states children have to sit in car seats this has an impact on going any where as every hundred yards or more Naomi is standing behind us so it takes us three times as long to get anywhere.
Did I understand autism no and I am on a massive learning curve to help her to reach her potential. We battle for everything and I am aware that other parents are fighting the same BUT I am also aware of areas where families children get so much support. If you’re reading this and think well my child has it and I get lots of support imagine what it would be like without that. Help me to get rid of postcode lottery and make sure all children have fair and equal access to services .. Life is like a box of chocolates we are all different and these children need a chance