“No Longer Alone: The Power of Sibling Support at the National Sibling Leadership Conference”

Mandy - Churchill DownsContributed by Mandy Kent.

Up until a year and a half ago I was completely unaware that groups of siblings formally met to provide support and share their experiences of having a brother or sister with special needs. Sure, I knew my sister and I weren’t the only people on the planet with a brother with a disability, but why would I assume there was support and camaraderie out there for people like me? It wasn’t until I learned about Sibling Tree, by chance, that a whole new world opened up for me.

Growing up with Matthew, who is six years older than me, has been a challenge almost every step of the way. I had to grow up quickly and take on “older sibling” responsibilities. But, I didn’t know any differently. As I grew older and became more cognizant that my family wasn’t “typical,” I had to learn how to advocate for him and educate people about his disability (which I suppose I did even before I had a name for his unique behaviors). By the time I was in high school (1997-2001) I recall frequently having conversations about my brother that were similar to this:

Me: I have a brother named Matthew. He is autistic.

Them: Oh! He’s artistic? How cool!”

I am currently shaking my head now because of how frustrating it was then that NOBODY knew what I was talking about. I would then have to explain what this crazy word, “autism”,  meant.

Just a few weeks ago I had the privilege of attending the Sibling Leadership Network Conference in Louisville, KY. I traveled there with two other incredible members from Colorado’s Sibling Tree, Shea Tanis (who was also a presenter at the conference) and Anuska UllaI. I signed up for the conference not really knowing what to expect. But, I was so excited! The conference took place over the course of two days at the beautiful Galt House Hotel in downtown Louisville. I had the opportunity to meet many amazing siblings from around the country…actually, from around the world. Women from Ireland, Taiwan, and Israel attended the conference, which just goes to show how great and important the Sibling Leadership Network is.

There were two featured speakers on the first day. The first was a fascinating woman named Tori Murden McClure. She was the first woman to row solo across the Atlantic and the first woman/American to ski to the geographic South Pole. She is the President of Spalding University and wrote an autobiography of her expeditions in A Pearl in the Storm. But most importantly, she is a sibling. She credits her brother, Lamar, as being the source of her strength and courage. The other featured speaker was Andrew McQuaide, a public administrator, an advocate, and a sibling (not necessarily in that order). As Coordinator of Community Development and Planning in the State of Rhode Island Andrew is instrumental in facilitating the generation of new programs and services to keep people with developmental disabilities out of unjustly segregated sheltered workshops and day programs and place them in competitive work environments in the community. These activities are a result of the landmark consent decree between the state of RI and the U.S. Department of Justice. You can read more about this here. Hopefully the rest of the country will follow suit.

In addition to the two keynote speakers, we heard from a sibling panel, shared our own personal stories, and ended the night with a “Sibling Survival Guide” book signing and reception. This was an amazing day and I couldn’t wait to see what was in store the next day.

Sunday was more of an individualized day. There were two breakout sessions, each with three different options. We were faced with the difficult task of picking which option we wanted to attend. The first breakout session offered the choices of: Planning for the Future, Advocacy for Siblings of Individuals with Disabilities, and Supporting Self-Determination. I went to the Self-Determination workshop which was led by a self-advocate named Liz Weintraub and two other presenters. It was interesting to hear Liz’s perspective on the responsibility that was placed on her sisters. Session two consisted of: Legal Documents Needed to Safeguard Your Sibling’s Future, Developing a Sibling Chapter, and Understanding the Collective Family Voice. I attended the Legal Documents workshop. This workshop probably would have been more beneficial to me if I had a basic understanding of legal wills, trusts, powers of attorney, etc., an area of need for many other siblings.

Just as quickly as the conference came, it ended. What an incredible experience this was. Never in my life did I think I would have the chance to be a part of something like this. I finally have a network of people I can go to who actually “get it” and can help me make informed decisions. I feel more positive about planning for the future.

Growing up with my brother was extremely isolating. While other girls my age were worried about their clothes and makeup and boys, I worried about whether or not Matthew would keep me awake all hours of the night, or when his next blow up would be, or if my family will ever be able to have calm and peace in our lives.

I am so grateful for having met Sandra Tucker, founder of Sibling Tree. Without her I would have never known about the rising sibling movement, and therefore, never would have had knowledge of the Sibling Leadership Network. I am so grateful to have these things in my life. I can finally say, after 31 years of my existence, I am no longer alone.

For more information about the national Sibling Leadership Network, go to http://siblingleadership.org/ ; information about Colorado’s chapter can be found at: http://www.siblingtree.org/

2 thoughts on ““No Longer Alone: The Power of Sibling Support at the National Sibling Leadership Conference”

  1. Mandy you are a remarkable woman whom I’m proud to say is my daughter. Your blog is inspiring and I hope will be very successful. I promise to tell my friends about your blog as they too need to be informed.

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