I found this article from over seven years ago that I didn’t end up publishing and since it is still relevant. So here it is!
It can be challenging to be a sibling of someone with a disability. Our parents, whether we like it or not has put their focus and attention on our sibling and many times it can be very hard on us. In my case, living in a single parent home there was a greater expectation at an early age to assist my mom with caring for my younger brother who has Duchenne Muscular Dystrophy (DMD). Although we may not have our parent’s attention as often as we would like I believe as brothers and sisters of a sibling with a disability we can learn many things as I have from my younger brother.
Challenges that you may face
- Time with Parents – Working parents and looking after a sibling with a disability may be all the time they have. This is especially hard on you when you are younger when guidance and support from your parents are what you need.
- Understanding the Situation – This takes some time in taking to understand what your sibling, parents and family are going through.
Things you may learn from your sibling as I have from mine
- Positive Attitude & Outlook – I remember at summer camps when we were young my brother was always given the nickname of Smilin’ Bob because of his genuine smile at all times. Although I know there are times my brother may struggle but majority his attitude is bright and his jokes witty. Not only does that help himself but really helps those around him.
- Trying New Things and Fear-lessness – My mom must have instilled this one in us but my brother is always willing to give something a try even if it needs some convincing to step out of our comfort zone. From power wheelchair hockey (7 years and counting and 3 time goaltending MVP) to disabled sailing in Lake Ontario, to presenting to youths about being a person with disability my brother is always game. This year I’m trying to convince him to go gilding.
- Patience – I have learned to be patient, from watching my mom every day assisting my brother in all aspects of his daily life from waking up in the morning to cooking to putting him to bed it gives you a different outlook when you apply it into your social and professional life.
To parents out there with children with and without disability I believe it is important to have your children be involved in helping their sibling as I have found it critical to my personal development.
To brothers and sisters out there, I know it can be tough but be strong and open-minded and you will learn many things from your parents and sibling.
Since writing that much hasn’t changed as I continue to learn from my brother and mom. From my experience, it is important that we as siblings practice self-care and to have a safe space for support and connection for ourselves. There are many moments that I felt isolated from my friends and family because I felt no one understood what I was going through. There are safe places for you as a brother or sister to someone with a disability that you can turn to.
Young Carers Program
Young carers are kids under the age of 18, who are in a caregiving role for a parent, grandparent, sibling or relative with a chronic or life-threatening illness, disability, addiction, mental illness, or language barrier. Young Carers Program aims to provide therapeutic programming to help kids with adult responsibilities cope and interact with other kids who know exactly what they are going through.
Extend a Family Youth & Adult Sibling Support Groups
Extend-A-Family hosts a Youth Sibling Group for people 14 to 17 and an Adult Sibling Group for people 18 and older who want to get together with others who have a sibling with special needs. Come together to connect, share, explore, support each other and meet new people!