My husband suggested that I write about siblings finding each other this week. We have our own language. When I use sib or sibling I am referring to a special needs sibling. Times are very different. I had a great aunt that was institutionalized for childhood schizophrenia. My grandmother never talked about it. We are not going to talk about it continued as I was growing up as well. We didn’t talk about my brother. I would always hear “don’t say much”. Well, I have no idea where I came from. As I have gotten older, I talk about it more. I also think that with social media, my generation and especially the younger ones put it all out there.
Where do we meet other siblings?
I am going to start with adults and move into building support networks for younger siblings in a separate post. I know in the professional world, we still don’t talk about it. I was in a leadership training with a finical planner for a year and it took about a year and a half before he said “oh yeah, I have a brother with Down syndrome”. Um…. I have not been quiet about my sibling or political issues regarding my siblings care. Is it not something we talk about in casual conversation? He does special needs planning. I have clients that have children with special needs. Just purely on a networking perspective, you would have thought this would be conversation. I have also met others- insurance sales and other non social service type roles. Many siblings go one to be in human services- therapists, social workers, and so on.
I always thought that no one got it. As siblings, we tend to mature sooner. High school was weird. By this point, my brother was in a group home. Most people thought I was an only child. This was even more isolating. Now, there is social media. There is a Facebook group called Sibnet. If you are not already on it, I would suggest going there. No parents allowed! We discuss the good, bad, and the ugly of what it is like to be a sibling of someone with a disability. This includes any diagnosis- mental health, physical disability, and developmental disability. So, I then found siblings who are close by.
Don’t worry. Masks were off just for the photo. We all have very different stories to tell and siblings with varying different needs.
Fun story from this weekend is on was on an entrepreneurial Facebook group and a woman state she was an OT and a sibling who just started a blog with her mother regarding sibling issues. She didn’t think there was one out there. So, we connected on Facebook. I also connected with another sibling in India who is running programs for adults on Instagram. I was listening to a podcast that she was interviewed on. (I am being interviewed on that same podcast so stay tuned.) This center is a must visit next time I am in India. Hopeful for 2022.
The last resource I will share is the Sibling Leadership Project. Their purpose is to promote a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families. They have a conference every 2 years that dove tails the American Association of Intellectual and Developmental Disabilities. It will be held in Jacksonville Florida in June of 2021. I went to the last one in St. Paul. The greatest part of that trip (other than that was the only conference I went to and did not have to speak) was there was a room full of 120 other siblings. No story was too crazy.
If you are a sibling or know someone who is, please pass on this information. It may make a sib’s day.
For more information or to have me come speak to your organization, please email email@example.com