Carers Week 2022
To mark Carers Week 2022, we held a week of events to help ‘make caring visible, valued and supported’. Parent/carers were treated to a wellbeing day, young carers were entertained at a private cinema screening, and everyone had the opportunity to tell their story.
Parent/carers enjoying a healthy and delicious lunch at the Cosmic Kitchen for Carers Week.
Caring for a child with a disability can be the most important responsibility in the world, however, we must not underestimate or ignore the difficulties that come with being a parent carer or young carer.
To help raise awareness of the realities of caring, we asked our carers to share insights into the rewards and challenges when caring for a child/sibling with a disability. The responses were honest, moving and heartfelt - read on to hear what they had to say.
One parent/carer told shared their account into life raising a child with Profound and Multiple Learning Difficulties (PMLD)...
“How do you describe what it’s like to raise a child with PMLD? Should I go down the woe is me route? Write about the sleep deprivation, worry, endless appointments, the new skills you have to learn and quickly?
Absolutely NOT - way too depressing and who wants to read stuff like that anyway? So, let’s describe the wonderful people you meet.
The portage worker who decided she didn’t know enough to help so she co-ordinated with other services to come with her so SHE could learn.
Or the teaching assistants who regularly go above and beyond their job for our children, and who stops you in the street to ask how you are and really wants to know.
Or the fabulous carers who become part of the family. Or the health visitor who keeps visiting even when your child has been discharged from her care.
Then there’s the health professionals who want to learn about disability. Or the healthcare assistant who will stop and have a chat with my child just like they do with every child, not seeing the differences. Or the school nurse who will visit home or hospital in her own time if our child is poorly.
Most of all, there are the other parents in the same position who find the strength to support others, find solutions and make us laugh about situations that would break many families.
Yes, there is a lot to complain about, but there is so much more to celebrate and be thankful for. I believe on balance, the celebration and thankfulness outweighs the hardship”.
Another parent/carer shared a beautiful and honest insight into their family’s precious journey.
We also heard what a day in the life of one parent/carer looks like…
“3am - How on earth is he so wide awake? Such an inquisitive mind, questions, and more questions. I persevere, trying to get him to go back off to sleep, trying to keep him quiet, trying to stop him waking the rest of the family.
6am comes around and he's fallen asleep. Only an hour until the alarm goes off.
I get up, bleary eyed and make a coffee. Sitting in the garden listening to the morning chorus. It's the most peaceful part of my day. I collect my thoughts and inhale the tranquillity.
I prepare lunches and get school bags and uniform ready whilst it's still quiet...
The alarm...
Everyone is up apart from him. He's tired and sleeps through all the morning rush. Finally waking and moody. Shouting, screaming, hating everyone and everything. No pleasing him today. The wrong bowl, the wrong cereal, he feels cold, he feels hot, his clothes are too itchy, too tight, too loose.
We make it to school just on time. He goes to his TA and I wish her luck.
My caring doesn't stop there...I care for my Mum too. Palliative care. My stepfather and siblings all chip in. Some days are harder than others but every single second counts and I make as much time to be with her as I can.
Back for the school run to hear how his day was. His 1:1 gives a run down, trying to give positives but the negatives, the struggles, the overload is always there. Should I just pull him out, home educate? I mean, I get him, I know his triggers, his strengths, his weaknesses, his needs. His mental health should come first.
My daughter struggles sometimes too, and my older son. He's doing his GCSE's and has ASD too. The guilt I feel, there's just not enough of me to go around. I need more hours in the day, more support, more time to give them separately. I want to be able to fulfil their needs but I'm barely scratching the surface.
Home, make snack, prepare dinner to meet all different needs, sit down and eat, clear away, play, talk, referee, bedtime......oh no here we go.
Another battle, another screaming, crying, howling, fight. Doesn't want the toilet, doesn't want to brush teeth, doesn't want to wash, doesn't want to change, doesn't want to get in bed, so so tired but doesn't want to sleep…and so the cycle continues...”
As always, we are here to welcome, support and empower parent/carers through activities, workshops and 1-2-1 sessions.
For young carers, we run regular activities through our Fun and Freedom Club that allow young carers time to make friends and have some fun away from their caring role.