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Having a child with disability, autism, learning difficulties or complex needs throws so many life experiences our way, so lets write about them and share them. 
 
Sharing my experiences and knowledge may help another person on their journey. 
 
If you have any topics relating to special needs, autism or other complex needs that you would like us to cover,  
please get in touch. 
 
 
 
 
 
 
 
 
 
Scarlett Merry a young carer with her brother George who has quadriplegic cerebral palsy on holiday at Kerry's Farm Wales
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I am a young carer as my older brother George has Quadriplegic Cerebral Palsy. According to the Children Society, there are 800,000 Young Carers in the UK https://www.childrenssociety.org.uk/what-we-do/our-work/supporting-young-carers. There are many different types of young carers and I have met lots of different young people who have very different caring roles. 
 
Some young people have to give a very high level of care to their family members. Quite a few young people I have met completely alone to care for a person living with a disability or mental illness and have a great responsibility. They have to grow up quicker than most children their age and it is really important to have places that help support them. 
 
I am part of Young Carers in Hertfordshire, as are my other brother and sister. The Young Carers in Hertfordshire provide support, days out and residential trips for people in Hertfordshire. I have been on a few of the days out and I also have stayed away on a residential trip with them. I enjoyed this when I was younger but now I am older I don’t use the service as much.  
 
My role as a Young Carer and what I have to do 
 
When I am at school, I have to get up earlier to help my family out in the mornings. During the school term, we don’t have a carer in the morning and my mum or dad need to help George get up and ready for school. I like to get to school early and have some chilled time in my form room so to make sure that my Mum or Dad are ready to take me I sometimes help out. 
 
George is fed through a tube and you have to make up his milk into a container which goes through a pump to feed him via the tube. I know how to make his milk up, link it up and set it up ready to be attached to George’s tube. 
 
I have started to learn about all the different medication George is taking. I have tried to make them up but it is harder than it looks and I am still learning. George has 7 different medicines to take and some of them are three times a day, some are just two. So, I have to make sure what I am doing is right. Mum and Dad always supervise me when I do this and they take extra time to help me learn. It is quite complicated at times but I am trying to learn. 
 
Often, I like to take part in George’s physio sessions with his physio Natalie. We play games and do activities to help George’s physio sessions be fun and enjoyable so he doesn’t realise he is working as hard as he is. He is very strong though and he is very happy when I get involved. Unfortunately, due to COVID the physio sessions have been shut off and I have not been able to join in. Now restrictions are lifting, I am hoping this will change. 
 
My brother doesn’t like being alone, so there are times where I do need to stay with him. If my dad is working and my mum is trying to make dinner, I might have to keep him company. I do like spending time with him but there are times where he is unhappy and I don’t know what to do. I try and talk to him, entertain him or do something with him but it doesn’t always work. Mum or Dad will always come and check and they say it could be something as easy as he is uncomfortable. Even though my parents have explained, I still feel sad that I cannot do something to help. 
 
Family Outings 
 
We have really good family outings but very rare as a whole family. My Mum and Dad do everything they can to try and include George and make the outing fun for us too. However, it is sometimes so hard to include my brother. Due to his condition, we are so limited on what we can do especially compared to other families. 
 
My Mum and Dad spend hours looking for things we can do as a family. They get very excited when they find something really good for George which they think we might all enjoy. I have to admit when they are very happy about finding an activity, we all go along with it just to make sure that George has a good time. Because George can’t do as much as we can, we want to enjoy it for him. There are times where we have a great time too. 
 
One time in particular, was a trip to Wales we had. It was for families who have children with needs. Initially, I thought it might be a bit boring when my Mum and Dad described it but it was such a great family holiday. We had a whole itinerary planned for the whole week, just for the kids and not for Mum and Dad. It was absolutely fantastic and something I will remember always. 
 
General Life 
 
It can sometimes be very challenging being a young carer, because some families don’t get the support that they need. My family is very lucky to have regular support. It can be hard having carers come in and out of the house but they are here to help my brother and my family so that is the most important thing. 
 
My brother needs support 24 hours a day, 7 days a week. He can’t take care of himself at all and he doesn’t like being alone, even for a short period of time. 
 
My brother Jonathon and my sister Abigail have to make a lot of adjustments and considerations in our lives. We do understand why we need too but sometimes we do forget and just want to do our own thing. It’s not because we mean to, but maybe we just want that little bit of normal time, but then we feel bad because we know how we have so much more than George. 
 
There are times when I spend time during physio with George, and he does something during the session just to show to me that he can. He wants to show his sister that he can and that makes me feel really good that he has done that. It’s a bit up and down but we stick together as a family and that makes me happy. 
 
School Life as a Young Carer 
 
I’m very lucky because my school recognises young carers and gives us support. They provide a weekly breakfast club that we can attend weekly, and we can take a friend with us to the lunchtime support. 
 
My school have many young carers with many different roles and situations. They try and help all of the young carers as much as possible. It can sometimes be challenging at school, because a lot of students would be talking about where they are going on holiday, or what activity they are doing over various periods, because sometimes you then think about however many opportunities you have to do that, or how often they happen. Most of the time, it isn’t very regular. 
 
My school are very supportive and I appreciate all the help and advice that they give me. 
 
I admire and respect people when they set up services especially for disabled people. It is very important to have these specialised businesses to cater for people like my brother. As they understand and can appreciate what is needed and work very hard. I also appreciate and am thankful to my school and Young Carers in Hertfordshire for recognising my role and giving me extra support and opportunities. 
 
It would be really great if more people could just take a little time to think about others and how a situation can affect them. Perhaps more businesses and groups could think about giving their support and it doesn’t have to be a service but perhaps an opportunity like work experience for someone less able or an opportunity to a young carer. Maybe have a think what you could do and even a small gesture can go a long way. 
 
#youngcarer #familylife #schoollife #youngpeople #icare #disabilitylife 
 
 
 
I'd welcome your feedback and comments below. 
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