I prefer to stay positive about Quinns. I focus on what he can do. How amazing that he understands, communicates, eats solid food and experiences the world around him. Everyone who meets him falls in love with his little character almost immediately.
The one time I get down about it is when I have to fill out the form to get his Disability Living Allowance (DLA). He gets high rate because basically he needs 24 hour care. He literally cannot do anything for himself. Having that pointed out to you and having to go over it multiple times is heartbreaking.
I remember so clearly the first meeting I had about it. I had to go through a list of milestones and say whether he had met them. My positives (smiles, laughs) very quickly turned to negatives (can’t hold his head up, can’t sit unaided, can’t weight bear.) It reduced me to tears.
After that it was awarded for 18 months with a review to add mobility after 1 year. When that review came there had been little change in my answers and of course mobility was added. So why then did I have to complete the same form again with the same answers six months later?
There is currently this petition to prevent parents of children like Quinns having to complete DLA forms so often please consider signing it.