The Life of a Parent Carer
I am a parent carer for my daughter who has ASD. I always knew there was something not quite right. My responsibility to care for her drove me to look into it and she was diagnosed at 4 years old. After the diagnosis, I was given the papers and sent away to manage things alone. I questioned myself a lot, did I do something wrong when I was pregnant? However, I have now learnt that is it the way she is wired. I feel so guilty for what she has to go through; she is 9 years old but I still have to do everything for her. There is a lot to put up with, I am a parent and a carer in one: the caring is automatic because I am mom but that also means that there is never any break.
It’s not just her struggles that I have to manage, I have my own too. I have anxiety and OCD and I wonder, is the OCD my way of having some sort of control? It’s a struggle but the reward when she overcomes something is huge.
I have often had other parents say “she looks alright to me”. School never see it either, she goes to school with this mask on to try and make things ok, then she gets home and explodes. It is so hard to get her what she needs: school, doctors, everything. You are the only person that knows that person inside out, it’s scary. I used to be the life and soul of the party but I have had to change for her, that person is still there but I just don’t do things for myself. I am always thinking ahead, I need to maintain routine for her. Everyone tells me how important my time is but how do I get the balance? Her needs are so great and I am the only person she trusts. It’s really hard, I can’t switch my responsibilities on and off. Us parent carers need our time but often, we don’t know when that can be. However, I wouldn’t be without her, it is just a sacrifice we have to make as parent carers.
I don’t know how to get the help for my daughter, I am just another parent and I feel like my needs don’t matter. Getting help is just so hard. I don’t normally talk to people about my situation, it’s hard to speak to people because they don’t always understand. I feel like there can be so much discrimination. There is a lack of understanding in society, people judge too quick which isn’t fair and it makes the situation so much worse.
I had never talked to anyone about my situation before, but being in touch with CTS has made such a difference. The difference is that they are there for me, everyone else is there for my child (which is great) but no one supports me as a parent. Now, there is someone on my side, who takes the time to ask how I am, which is bizarre for me. I feel safe with them.
Being a carer is the most important job in the world, whoever that person you are caring for is, you are doing something for good.