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"Who cares when a parent is disabled?"
Kerami is a music teacher and a mum. Today, she talks to us about her experiences of having her daughter as a Young Carer, and how she accessed the support her family needed.
I want to take this opportunity to highlight and thank those people in our communities who support our Young Carers. Our children (usually) and young people who love and live with those of us who need a little more help. We need a little bit more physical help, maybe help communicating with others and we may need a little more moral and emotional support.
We may need more help than a little.
We may need a LOT more. And that's hard.
It's hard for us as parents knowing we put this extra need on to our children, it's hard for those around us to understand this complex relationship, and it's especially hard for those who are Young Carers.
That’s why I want to give a BIG THANKS to the organisations who support Young Carers. These organisations can have different amounts of funding depending on where you live. There are sometimes campaigns on TV and most people have heard the term 'Young Carer' but, I for one, didn't really understand it until our daughter became one.
Our daughter is 10 and is happy for me to name her. Emily gradually became a young carer as I, her Mum, gradually became more disabled. When we had Emily I was less disabled and I expected to give her brothers and sisters, to take care of her physical needs and certainly didn't plan on being in need of her care....
Can you hear the guilt coming out as I type? This guilt, this profound guilt at needing the help of my own child was the first thing that delayed us from accessing support sooner. I have found it difficult to label her as such. I've watched many TV reports of young carers and never felt anything but admiration for other families... But when it became me, I guess it became very real. I worried so much that either Young Carers supporters would judge me as a bad mother, or worse, as not looking after Emily well enough.... every parent’s fear. I worried that if I invited the professionals supporting Young Carers into my messy chaotic house, they would contact social services. I know now that these were the anxious thoughts of a Mum struggling to come to terms with everything. I know now that those who help Young Carers do not judge families, but can become a source of support and strength.
The first call with Young Carers was pretty much me spilling out all my fears and worries for Emily and I also didn't give my name until I felt I was able to trust them. Please also know I was getting used to lots of strong medications so this probably didn't help! But they understood this, and they understood well everything. They knew we had things out of our control, that some days I was on medication or ill and certainly not as able to keep a tidy house. But that that didn't affect our love and care of Emily.
From their first visit they put us at ease. We chatted about our family situation and my disability, sometimes without Emily, often with her and sometimes without us so Emily could speak freely. Because despite all my fears, the reason I reached out was because I saw a campaign on TV. It talked about children doing physical things for their parents and I wondered if I was 'disabled enough' to deserve support. But then it talked about Young Carers needing EMOTIONAL SUPPORT and that really made me think...
I thought about the times Emily had woke hearing me sob uncontrollably at the loss I have suffered. The crying on the phone after hours of calls to benefit offices, her cuddling me when I lost my job and her waking in the night when an ambulance had been needed... She has us to talk to and her fab extended family and school. But she doesn't talk to them. She tells them she is fine and that Mummy is fine and everything is fine, fine, fine…
Young Carers have taught Emily to talk about her feelings. Going on trips to fun places with staff has meant she has channels of private communication she can use to support her. She has ways to deal with her own emotions, and it has helped us deal with difficult times and celebrate better times. Also on these trips are other children who share their roles as young carers. They understand! I remember this time last year, Emily came home from a trip and said she told her fellow young carer that Mummy had a new wheelchair that was electric and this friend knew exactly HOW exciting this was for Emily and our family. She just understood.
Being with other young carers is as important as staff support to develop Emily's confidence and in helping her relax away from those who ask awkward questions. It also gives Emily a chance to relax away from her caring and she gets to go to places where we can't take her because of the wheelchair. This is also 'guaranteed Emily time' as often I am ill in the school holidays. It is a day off that Emily knows is not going to be spoilt by me being disabled which sounds awful but is a reality.
I am so proud of our little Young Carer. The first thing our Young Carer lady said to our family when she came to visit was that children who care are often those who grow up with confidence, independence, skills such as washing, cooking, empathy and she is right! Perhaps I would have encouraged Emily to do more around the house and help even if I were more able bodied? Who knows. But there are times when Dad's at work where we really look after each other. Like last week when (with supervision) she made us baked spuds, tuna and veg for tea as I was having a very sore day.
So perhaps you are reading this and wondering if your family need support. I encourage you to Google 'young carers near me' or perhaps use the Carers Trust. Whether a child is a young carer or not isn't black and white. You can call and chat to someone about it, have someone to your house to meet you all, it's your choice as to how much or how little support you need at each point. Funding is stretched, and not all places in the UK have the same organisations and support in place, but wherever you live there will be something and whoever you are, you deserve support.
What do you think of Kerami’s story? Share your thoughts in the comments below!