Young Carers Awareness Day is an event held each year. This year it took place yesterday, 30th January 2020. Led by Carers Trust, it is an event that was created to give recognition to all the young carers in the UK. It’s a day to raise awareness of the challenges young carers face every day and how important it is to get the right support.
There are thousands of young carers throughout the UK who are caring for loved ones every single day. They may be caring for a parent, sibling, grandparent or friend. No matter the amount of care they provide to a loved one, it can be incredibly hard both physically and emotionally.
I have Limb Girdle Muscular Dystrophy, which is a progressive muscle-wasting condition. I use a powerchair and require the help of my family/personal assistants to carry out most of my daily tasks. Everything from getting out of bed, showering, dressing, cooking, toileting, driving etc.
My blog is a way for me to document what it’s like to have Muscular Dystrophy, the ups and the downs as well as the good and bad in terms of accessibility.
Recently, I’ve shared my parents perspective on my disability and what it’s like to be in an interabled relationship with a Q&A with my partner. I also have two sisters, one has the same condition as me (Claire) and the other (Lisa) has no disability. All three of us are in our thirties now.
In this post, I ask my youngest sister to answer some questions on what it’s like having two disabled siblings with Muscular Dystrophy.
1. You were a toddler when Claire and I were diagnosed. You grew up with us being disabled and never knew any different. Can you explain what it was like growing up with two disabled sisters?
There are roughly two and a half to three years between the three of us so we have always been very close, not just in age. You were both diagnosed when you were each around seven or eight, so I was very young at that time. I don’t remember being told about your disability. It was just the way things were and I didn’t really know any different.
There were times during my childhood when I found having two disabled sisters difficult. At times it was hard to get my head around certain things, which was down to being so young and not fully understanding the circumstances.
One of the things I found difficult was that you both got everything you asked for (in terms of needing help, fetching things around the house etc), whereas, because I was able, I was often expected to do it myself. Looking back now, it makes me cringe a little at how silly that was, but children see things so simple.
As an adult, I have gained a much better understanding of the condition and how it affects you both.
2. What was/is the most difficult thing about having disabled siblings?
I wouldn’t say there was one. Even now, I can’t say what the most difficult thing about having disabled siblings is. Your condition is progressive so you were both quite physically able to a certain degree when we were younger.
We played in the house together and we were always outside playing with friends who lived in our street. You both were able to ride bikes at a young age, play hide and seek and all the usual things kids do. Of course, there were some exceptions but you both found ways to adapt and the other kids were very understanding of your disability.
As you both got a little older, mainly throughout primary school and high school, your needs changed and you both relied more on your manual wheelchairs and powerchairs for school, playing outside and moving around in the house.
As adults, I would say we are much closer and do lots of things together like family outings especially now I have a son. Nowadays we are able to do more things as accessibility has improved so much compared to twenty years ago. There is still so much more that can be done to improve accessibility though.
3. Having disabled children is challenging. Did you ever feel left out by our parents?
Yes and no. Our parents always treated us as equal as possible but being able-bodied I was expected to do more things for myself. I sometimes had to wait until both of your needs were taken care of before mine especially if Mum was helping you with your personal care and things like that.
I understand why that was, our parents had two physically disabled daughters to care for and it was constant hard work. It was especially difficult for our Mum because our Dad worked away a lot, so it was mainly on Mum to do it all. When I was very young and you both were at school, Mum would have one-on-one time with me, which was good. Our parents also tried to involve me as much as possible or as much as I wanted, in doing things for you both. It was good to be involved but there was no pressure or expectation on me if I didn’t want to.
In a way, I think helping you both with aspects of your care needs made us closer as sisters. I also feel that having disabled siblings has made me grow up quicker, but I don’t resent that at all.
4. Did you feel a sense of responsibility for looking after your disabled siblings? Do you still feel responsibility or feel protective of us?
I do feel a sense of responsibility to you both and I have always felt the need to protect you, even when there is no need. Disability or no disability. Sisters are always there for each other.
5. Were you treated differently by friends/peers because you had disabled siblings?
Having disabled siblings was just normal for me. Thankfully, I don’t remember being treated differently by anyone. I know that isn’t always the case and some children may get bullied or treated differently for having a disabled family member. It’s unacceptable.
6. In what ways have our physical disabilities changed family life?
If anything it has made us stronger and closer as a family. Growing up having days out or holidays were always extra stressful. Having to make sure there were disabled toilets and the places were wheelchair accessible.
Unfortunately, that is still the case today, but accessibility is improving. I just wish things were easier and there were better toilet facilities such as larger accessible toilets and Changing Places.
My six year old son adores you both and is fully accepting of both of his aunties having a disability and being in wheelchairs. He doesn’t see any difference. I believe having two disabled aunties has and will continue to have a positive impact on my son. He is growing up to be kind, caring, accepting and understanding.
7. Did you receive any type of support? Would you have benefited from attending a support group or youth club for siblings of disabled children?
I didn’t receive any type of support as a child. It was our life and we just got on with it. I think siblings who have disabled family members would benefit from that time away. It would give them the chance to have a break and enjoy time with their friends, even if it’s for an hour or two. Time for them to just be a child without any responsibility.
8. What can parents do for siblings of disabled children?
It can be very difficult, but if possible, parents can try to make time to spend one on one time with. Doing things they enjoy doing that other kids would take for granted. Even just going a walk to the park, to the shops, soft play, cinema etc. Even time at home watching a movie or crafting. It’s often the small things that matter the most.
9. Was it ever a concern that you also had Muscular Dystrophy?
I think as I grew up, the concern for me having Muscular Dystrophy passed. You were both seven or eight when you were diagnosed. I remember as a family going to Newcastle to see a Muscular Dystrophy specialist. Emma was getting a muscle biopsy and the family were getting blood taken. These tests were to determined the exact type of Muscular Dystrophy you both had.
10. You are now an adult and have a young son. Was it ever a worry or concern that you were a carrier of the faulty gene and that your children would have Muscular Dystrophy?
It was a huge decision when I started to think about having children of my own. Because I didn’t know whether I was a carrier of the gene, it was a concern that my child may have Muscular Dystrophy. This was obviously something that would have affected my whole family. Having two sisters with the condition, I knew that even if my child did have Muscular Dystrophy, they would have a full and fulfilling life like their two aunties.
11. When you were planning on starting a family, did you seek advice from any specialists? What was the process?
We met with a Neuromuscular genetics consultant that had dealt with our family over the years. She explained to us that there was a two in three chance of me being a carrier of the faulty gene. The consultant also said that the father would also need to carry that gene, which was very unlikely. We now have an almost seven year old son and he doesn’t have Muscular Dystrophy.
12. What advice would you give to someone with disabled siblings and in particular Muscular Dystrophy?
I would say always make time for you, no matter what age you are. That could be spending a few hours alone with your parents or going to a youth club or playing with friends. It can be tough, but as you grow up it becomes easier and gives you a special friendship and trust with each other. Don’t be afraid to speak up and ask for help. Seek support and join young carers groups where you can meet and speak to other young carers.
Young Carers Facts
The following facts are provided by Carers Trust as part of their resources for Young Carers Awareness Day.
- A young carer is someone under 18 who helps look after someone in their family, or a friend, who is ill, disabled or misuses drugs or alcohol.
- 1 in 5 secondary school children may be a young carer.
- Many become carers at a very young age
- Social experiences and education can be negatively impacted
- 2 in 3 young carers have been bullied in school
- 1 in 3 young carers say their caring role makes them feel stressed
- 23% of young carers felt their caring role had stopped them making friends
- 48 the average number of school days missed or cut short as a result of a young person’s caring role
I want to thank my sister for taking the time to answer these questions and for all her support throughout the years and continued support.
If you have any questions, please leave a comment below or you can send me an email if you’d prefer to chat privately.
Does your sibling have a disability or illness? What impact has it had on your family life? What are your strategies for coping with it? I would love to hear your thoughts and experiences.
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