I got this in the post today:
It is clear from your application that your child requires additional support; however, while the diagnosis of your child's disability is not in question, the medical evidence provided does not indicate that the extra care and attention required is substantially in excess of that required for a child of the same age who does not suffer from your child's condition. As a result your child is not considered eligible for Domiciliary Care Allowance.
I suggest that my blog proves otherwise! But then the Department of Social Protection has probably not found it yet. And it's not just me. Apparently many children with Autism, Asperger's and similar diagnoses are routinely refused DCA at the first application, which is then followed by a round of appeals and reviews, presumably designed to sap the will of parents already struggling with the difficulties of rearing a child with asd.
Facebook friends have advised me to keep a daily diary of everything I have to do for aspie boy. As I need to start the appeals process tomorrow, I started writing the diary today. And here it is:
A Day in the Life of a 10 year old aspie....with no meltdowns
(probably very boring to read unless you have a similar child)
At 6.15 am he calls me, so I go down to him, give him a vest and pyjama bottoms and wait while he puts them on. Then we go downstairs and I make him a hot chocolate. He goes into his den and plays. At 7.30 am I go into him and remind him to get dressed by 8. I give further reminds at 7.45 and 7.55. At 8, I remind him to come in for his breakfast. And again at 10 past 8. I make drinks for breakfast and lunch. Once he comes into the kitchen for breakfast I have to keep reminding him to get his bowl and cornflakes as he keeps running up and down the room.
After breakfast I remind and supervise him in putting on his coat and shoes, and cleaning his teeth. When the school bus arrives at about 8.30 am I need to see him across the road because he just 'forgets' to look out for cars unless reminded.
He comes in from school at 2.40 pm looking glum after a run in with another boy who has apparently threatened to hurt him. I remind him that he needs to talk to his teacher. He also has a mark on his hand and a pain in his wrist, which needs lots of plaster tape and Nurofen before he will use it. It seems he refused to do school work on the strength of his 'sore' wrist and was given extra homework as a result.
The school provides lunch to stop the boys eating rubbish, but my boy won't eat it, and while I put a drink in his bag, he often forgets that too. So he is hungry and thirsty when he comes in. But I still have to tell him to finish the drink in his bag and make him lunch, followed by 20 minutes in his den to calm down. Then he comes into the kitchen and it takes another 55 minutes before I can get him to start the homework, and 45 minutes to complete it. I have to supervise it all, to keep him on task, and then check it.
Three dinners need to be made: Smiley only eats mashed potato, but he won't touch that, so I also make lasagne and peas for me and Angel, and spaghetti bolognese for aspie boy. About 8pm I go in with medicine, a drink and a piece of dark chocolate. He gets a 5 minute warning before his shower, which turns into 10 minutes as he asks for another hot chocolate. Then I have to wait while he checks something on his laptop. Into the bathroom, where my role as usual is to remind him of what he should be doing. After the shower it's up to his bedroom. I read him a story but he keeps forgetting to listen and tries to engage me in conversation. Then I say good night, but because of his fears I have to sit on the end of the bed and wait for him to go to sleep. This can take from 10 minutes to one and a half hours. Tonight I was back downstairs by 9.45 pm. Finally I got time to complete a long-term illness application for him and to complete this diary...