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 a 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.
What can we do as siblings?
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.
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!
Family Association for Mental Health Everywhere (FAME)
FAME programs and services can be accessed through an open-referral process; these are commonly from the Children’s Aid Society, hospitals, school boards, community mental health agencies, and family self-referrals. An intake process is conducted on or before the first session begins. No fee or identification is required to access services. Group support programs are tailored to specific age ranges, where developmental age takes precedence over biological age. Program facilitators also consider participants’ varying degrees of contact and caring responsibility for their loved ones. Program evaluations are conducted using participants’ evaluations at the end of group programming. Anonymous service evaluations are also sent out to clients quarterly. They provide individual support, FAMEkids Group Support and a Youth Group.
Gilda’s Club Greater Toronto
Referrals to Gilda’s Club Greater Toronto can be from anyone, including self-referrals. An intake process takes place at the Gilda’s Club Greater Toronto clubhouse, and it allows new members to meet with program staff, receive a tour of the clubhouse, and discuss their participation in one of the support groups. Participants complete pre- and post-evaluation surveys as part of the organization’s program evaluation. They offer multiple programs including Kids Talk Out and Kids Grieve Too, Adult and Children Support Groups, Adult Bereavement, The 20’s and 30’s Caregiver Group.
Heart House Hospice
Children and youth access the Help Us Understand Grief (H.U.U.G.) Program through internal and external referrals. Internal referrals come from hospice counsellors who identify children and/or youth in the home who might need support. External referrals come from schools, hospitals, community organizations, Child and Family Services, health care providers, or the families themselves.
Hospice Toronto & 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.
Roger Neilson House
Spectacular Incredible Brave Siblings (S.I.B.S.) is a program that aims to support siblings of children with life-limiting illnesses. Siblings can often be an invisible population who suffer in silence while dealing with the same amount of worry and stress as a parent. S.I.B.S. is a program that creates a safe environment for siblings to receive support from peers going through similar experiences.
The Teresa Group
Access to programming requires a referral (e.g., hospitals, clinics, AIDS service organizations, etc.). Self-referrals are permitted. Clients must be living with a family member with HIV, or they have HIV themselves. An intake process is conducted. The programming focuses on developing coping skills, resiliency, and emotion identification and expression. The programming is also an opportunity for supporting clients with systems navigation and making any necessary referrals. They provide counselling and other support group services.
Young Carers Initiative Powerhouse Project
Referrals to Powerhouse Project can be from anyone. The intake process begins in the home where a staff member can meet all family members. The intake includes an assessment of the young carer’s level of caregiving and impact, as well as their interests. The intake also involves the parent to create a ‘plan of care’, where family goals are created and referrals to other community services may be suggested. They provide ‘Carers Night Out’, Life Skills Program, Camps, Teen & Young Adult Programs, Youth Advisory Committees, Educational Workshops and One-on-One Visits.
Young Carers Project
The Young Carers Project offers training to the community as well as specific organizations, to educate them about young carers and their needs. In working with various community partners, the Young Carers Project helps to increase their capacity to support young carers by helping them adopt best practices within their context.
The Young Carers Project conducts research about young carers, such as participatory action research, to evaluate their impact on their community, and develop resources that can be used across Canada. Currently, a Community of Practice is being developed that will be open to people anywhere in Canada. It provides an opportunity for people to meet virtually four times a year, to discuss how to better support young carers and address their needs in specific areas throughout the country.