25th November 2016 Me
For Carers Rights Day 2016, the theme is Missing Out which you can read about here. Whether that’s missing out on information, support, benefits or respite, every carer’s story is different so My Family, Our Needs have asked one dad and carer of three children with additional needs to share his story.
You may have seen Marc Carter appear recently on BBC news, talking about his search to find a replacement identical little blue cup that his son Ben could drink out of. #CupforBen sent social media into a spin, with people all over the country looking in their cupboards at home for the exact type of cup for Ben to drink out of. In the end, Tommee Tippee contacted Marc to tell him they had found the original mould of the cup he needed for Ben and would make as many cups as the family needed.
Thankfully, Ben didn’t have to miss out on his little blue cup, but Marc knows all about missing out…
Life is often far from straightforward. As a carer, it’s not even close to straightforward. Caring responsibilities will always come first and, even when you get time to yourself, the person you care for is never far from your mind. It’s amazing how many professionals will tell you that you have to put yourself first, but are any of them a carer? Often they don’t even have kids. Would a parent consider their own needs before their child’s? Not for anything significant, unless they are destined to be on the front page of the local papers sometime very soon.
I gave up work to be a full-time carer, and I love that I can give my children so much of my time. By now I should be able to go out and do so much more than I get to do, but my caring role prevents this. Autism prevents this. A little blue cup prevents this.
What did he say? What an idiot, that’s got to be some sort of typo.
I really wish it was.
Little blue cup
Ben has, since the age of two, drunk from a little blue, two handled Tommee Tippee cup that so many of your children would have used. Life is challenging with this cup as Ben simply refuses to drink from anything else. He will only drink when he eats, and he will only eat if he wants to. Consequently, if Ben is really hot and bothered and doesn’t want to eat, often he won’t drink. He doesn’t feel able to just pick up a cup and drink – he isn’t hungry so he can’t have juice. The worst example of this saw Ben hospitalised with severe hydration after going five days without fluids. But that’s not the only trip to hospital we’ve had.
Ben also doesn’t eat or drink outside of the house, so this makes our trips and adventures short, non-existent or not at all nice for Ben. He hasn’t eaten or drunk at school since he was five – he just decided to stop – and this makes hot summer days harder for everyone, especially Ben. This little blue cup is debilitating to Ben, and us as a family. We all miss out on many things.
As a parent of children with additional needs, life is never going to be straightforward. But that’s ok, he needs ‘normal’ – normal is boring. I love my life, I adore my children, I am happy that I can spend so much time with them rather than having to grind away at work five days a week, longingly dreaming of my next holiday.
Getting a break
Holidays, now they can be interesting when you are a carer. Some people manage, some people struggle, others don’t bother to try as they know it’s not going to happen. You can put us firmly between the latter two. We feel it’s so much bother and it almost fills us with dread to think of a holiday, although we have enjoyed a few, but they have to be meticulously well planned. Even though we have a large seven seater car and there are only five of us, we still have to take two vehicles for a week-long UK holiday, to ensure we get us and our supplies there. We couldn’t risk forgetting anything, that would be a nightmare.
On one five day break to a caravan in Wales, we spent the first day scouting shops for connecting leads to get a games console to link to the TV (6 hours of holiday wasted). Day three of the ‘holiday’ was spent driving 300 miles to pick up some incontinence pads because we had somehow decided we wouldn’t take a few more to be safe. That was pretty much a day of the ‘holiday’ gone for me.
I say ‘holiday’ because it isn’t, I can’t be bothered to look up the definition of the word but I’m pretty sure it will include words like ‘rest’, ‘break’, ‘relax’, ‘fun’ and more. You can see where I’m going with this.
I did say Ben doesn’t eat or drink outside of the house, and then I went to say we have had holidays. When we are all there and we have his bedding, 37 soft toys, games console, computer for music, speakers, TV and monitor, clothes, CDs (usually several hundred), he considers wherever we are staying his home for a while. It takes the rest of the day and into the morning, but he eventually gives in.
It’s nice to get away and it’s lovely to see the children enjoying themselves, but it isn’t easy.
Some time for siblings, too
In our family are my stepson, Sammi who is 24, Ben, who’s is 14 and my daughter Ayesha, who is 11 going on 21 with a mental age much younger than her years – it’s complicated.
Ben has severe autism, severe learning disabilities, he’s non-communicative, non-verbal, and more. Sammi is autistic, has other needs and learning disabilities, Ayesha is, at the time of writing, undergoing assessment for autism and has learning disabilities.
They are all so different and enjoy such different things that it’s pretty challenging to find something they all want to do on holiday or even find a day out that they would all enjoy. Add in to the mix that Ben would rather not do anything other than his own thing and it gets messy.
Sammi and Ayesha want to visit Disneyworld; we have agreed going to the US is impossible, but we have compromised with a few days in Disneyland Paris and then a trip to Lapland to meet Santa – they are both believers, I hope Santa has strong legs.
I won’t be going, Mandy my long-suffering fiancé has offered to take the kids. Ben and I will stay home, we’ll have fun in our own way, but once again the little blue cup means I’ll have to miss out.
Do you feel that you miss out as a carer? Are some things just too difficult to do? Or do you insist on trying to make things work?
Carers UK has developed a range of tools to help carers, early in their caring journey, get the information and support they need, including:
- Upfront, the first online guide of its kind gives tailored financial and practical information to those who are new to caring.
- Looking after someone, an annual guide to carers’ rights and the practical and financial support available.
For more information about the financial and practical support available for carers, visit www.carersuk.org/help-and-advice
You can follow Marc’s story on Twitter @GrumpyCarer or with #CupForBen