This week is Carers Week and the theme this year is Making Caring Visible.
Caroline Bradley, our Capital Project Manager has written a blog that highlights the demands of a parent carer.
10 things you may not know about being a parent carer.
We all know that being a parent can be a challenge but there are lots of rewards too. Being a parent carer can be a whole other level and can make the rewards greater, but only if you have time to enjoy them!
- The knowledge. When you have a child, midwives often tell you that there’s no handbook and as a parent carer you literally need a library!
- The expertise. You not only have to become an expert in whatever condition, disability or difficulty your child has, you also have to become an expert in how the systems they need to support them work.
- The paperwork. There’s a form for everything and some forms you have to fill in time and time again, including some that are 40 pages long, that you need an expert to help you fill in.
- The acronyms. You have to learn lots of acronyms and often numerous times because they change all the time. SEND this, PACT that, SLT, OT, IPSEA, NAS, ASD or is it ASC, ADHD, PDA etc. And people who work within education and other support services often assume you know what they mean…
- The support gap. There’s often a big gap between what’s meant to be provided in terms of support and what’s actually available. Whatever your child’s condition or difficulty you’ll probably have lots of appointments and meetings with lots of different people. It can take a long time to get the right appointment with the right person who can actually help and you often get re-referred to someone else and end up on another long waiting list. Whatever support your child is getting has to be reviewed regularly and you have to keep on top of what everyone involved with your child is supposed to be doing and chase them and then chase them again.
- The panels. There are a lot of panels that make decisions about your child’s health, education, transport, support services etc etc though you very rarely see them. Like the Little Britain sketch sometimes the panel says “no” even when the law and the statutory guidance says “yes”! So you have to know the law so you can quote it at them.
Sadly, you will more than likely have to go to tribunal at some point to get what should be provided for your child by law but isn’t. Sometimes you can be facing more than one tribunal at once, at the same time – this is when it gets really stressful.
- The mixed emotions. The pleasure you get from seeing awareness and understanding of disabilities and differences/needs being raised, as you know this can help your child be accepted and supported. Then the heartache you feel when you see all your friends’ children meeting their milestones and achieving things that your child can’t – you feel you’re on the outside looking in… But then you realise you have to stop comparing your child and yourself to others and focus extra hard on what they CAN do, taking every little development as a big WIN! Then back to the despair you can feel when you’re struggling to cope, coupled with the joy you get when they do something unexpected but brilliant.
- The pressure of trying to stop things going wrong. This can be when you’re at home with your child and/or going out with your child. Both can be equally difficult. You can spend your life trying to pre-empt what might go wrong in any situation and can often be filled with dread, for example, when you see the school’s phone number come up on your screen. Good schools understand this so immediately start the conversation with “Nothing to worry about, s/he’s fine…” (unless s/he’s not of course).
- The challenge of looking after your child. On top of all of this you have to do all the looking after your child that everyone else has to do, plus helping them with things they can’t do or do differently. And you need to help them see themselves and their difficulties positively, so that they can cope and thrive as children and adults.
- The challenge of looking after yourself. Being a parent carer is exhausting. Physically, mentally and emotionally, but you also need to look after yourself because your child needs you. Research has shown that parent carers can have stress levels equivalent to front-line soldiers, living for years in their own daily war zone. Carving out some space and time to look after yourself isn’t easy, but it is vital so that you can keep fighting the good fight.
Lastly, my message for Carers Week to all of you is do what you can to help look after parent carers and all carers – they need it! And my message to parent carers is keep going, you’re doing your best and you are amazing!
Rethink.org have shared 4 ways to make carers more visible here.
Visit Carers UK for more info on Carers week plus ways to join the initiative, donate, help and campaign.