One very real, rarely talked about, aspect of having a child with disabilities is the need to claim Disability Living Allowance (DLA).
DLA is a benefit paid for children who need additional care or supervision due to a disability and/or health condition.
It is one decision I put off for many years.
I did not want to apply because I didn’t think my child was ‘disabled enough’.
I didn’t feel like we were really entitled.
After years of ‘ifs and buts’, I sat down and did the paperwork……and we were awarded it.
Then came the guilt.
That was a real feeling. I felt guilty.
I feel guilty.
My child is my child. The extra supervision and care needs are what I am expected to do as a Mother.
I am her caregiver. I do it all because of the love and nurturing I want to give my child.
I felt guilty because I didn’t feel like I did anything extra…….
……because I didn’t realise I did.
When my second child was born I realised how different things were.
I realised how much extra time my girl needed.
I realised just how much I had to do for her, how much she relied on me.
I wouldn’t change it, I don’t resent it, it is just the way it is.
It is normal for me.
I had to, needed to, make the claim because I am unable to work due to my child’s needs.
I needed to claim so I could buy the things that she needs.
I needed to claim to help with the costs of many hospital visits.
I could see no other way.
Guilt was still there. Is still there.
DLA has become a neccessity.
It is a neccessity for many parents of children with additional needs.
It is not something to be ashamed of claiming.
It is not something to be embarassed to have to ask for.
Many parents cannot work because there isn’t adequate childcare for children with their needs.
They still need to live, have money and provide for their families.
Today I started my girls renewal paperwork.
The form is 43 pages long and designed to break your heart.
Page after page asking what your child cannot do.
Question after question making you cry as writing it all down makes it so real.
It is real.
Reports from professionals photocopied, supporting evidence attached, a sense of dread sealed in with the words.
Dread because I am scared it won’t get renewed.
How I feel guilty even writing that.
The thing I felt so bad for asking for, I now rely on.