Today a very depressing document arrived in the post. The mammoth form for claiming DLA for M. We knew it was due for renewal in October, at his birthday, but it was still a hard swallow moment to open the package with the form.
When M was diagnosed we were advised to apply for DLA (Disability Living Allowance) as we would face things that a typical child of his age doesn’t. We were awarded it until his 8th birthday, this year. Filling in the form was one of the most depressing things we had ever done. We have always tried to be positive about what our children can do, and I do believe that helps them in everyday life. Being negative achieves nothing, other than to upset the balance of the situation. Do they need to focus on what they can’t do or be built up to believe in what they can do? I know which I think is more important. However when you fill in the form, it is the negatives you focus on. You suddenly realize that your child has plenty of differences from a neuro typical child. I left the filling in of the form to Hubby, as I found just reading the questions upsetting. We had plenty of advice from the NAS about how to complete the form, which was needed as faced with the 42 page document is daunting. Hubby still managed to add plenty of additional pages when giving the details of M’s behaviour. I then read the completed form and cried. I had tears rolling down my cheeks the whole time I was reading it. These pieces of paper were telling about how different, and difficult it could be to parent my darling perfect boy. It was horrible, but every word was just telling it how it is. We also had to get a report from his nursery he was attending at the time, and the teacher asked why we were applying. Other than it being none of her business, and it made me feel like a scrounger to be applying, I was able to give her an honest answer. We were applying so we could give my sons a mother who could drop everything at a moments notice to be there for them.
When D was diagnosed, it seemed far more straight forward applying. His behaviour is so one extreme to the other, that while it was still heart breaking to document, it was some how easier to do. He was subsequently given an award until his 16th birthday. This means a lot to us.
When we were planning for the arrival of M all those years ago, the plan had always been that I would be a stay at home Mum until the boys went to school. I would then go back to work, probably part-time. The perfect plan. The thing is things don’t seem to work out the way we plan them do they?!
Being awarded the DLA means the boys gets a full-time Mum. It means M can come home to lunch so he eats during the day, and doesn’t get himself into too much trouble in the playground. It means when one of them is poorly, I can spend a day giving cuddles. It means I can be here for them when they need me. I would rather be out to work to help us make ends meet, but that wasnt on the cards for me and my brood.
I didn’t choose the role of a full-time carer to 2 children with developmental problems, but I am with all that means. I don’t get full nights sleep, I don’t get time for me, I don’t get to interact with adults too often, but what I do get is to see my children grow and develop beyond what we might have expected. I get to guide them in their daily lives.
I am dreading reading the form once Hubby has filled it in this time, as I just know it will be upsetting, but it gives us a reality check on how different our lives is compared to other families of children of their age.
Hubby wrote a lot about filling in the form last time, if you would like to check it out – http://theworldofneil.wordpress.com/2013/02/25/claiming-dla-for-a-child-with-autism/