It wasn't until a month ago that I even ever thought of the fact that a child on the spectrum may have brothers and sisters. I don't know why I never thought of this fact, but when Ann Schad, a 20 year vet in the field and coworker at TouchPoint, asked me to do a small presentation at one of her monthly sibshops I began to think about this.I mean, if the autism spectrum is confusing of experts, doctors, and parents then just how confusing and frustrating is it for brothers and sisters?
Unlike many other agencies, TouchPoint's sibshop is held monthly and focuses only on autism. Ann started being a facilitator for this group 15 years ago. When she started it the primary focus was younger kids. As these kids grew up though families requested that the program would advance with age and now she has two groups; younger kids and teens.
The first group two nights ago was the younger kids and I wasn't going to give a true presentation at this one, but I knew I would learn a lot from the kids as I was highly interested in their views and thoughts on the matter.
I don't know how Ann does it, but she has a way of getting people of any age or profession to open up and very quickly the three kids and her were talking about the challenges their brother or sister has. This isn't to say that the program just talks about the relatives as this isn't the case because what is talked about are these kids joys and frustrations.
From being annoyed to an endless supply of facts to being annoyed due to certain noises, these younger kids seemed to understand their brothers need to do it, yet there was this desire they stated that wished they were just more normal. I am sure this is understandable, and yet they told stories of standing up for them when their friends are home. I found this to be just so, well, amazing! From the stories they told when no friends are over it sounds much like a normal brother/sister dynamic, yet when friends are over these kids told stories of standing up to it and explaining a little about autism. I never would have imagined anything like this (of course I never imagined this concept at all before Ann asked me to join it for one night).
After the first group I was filled with so much hope because these kids truly seemed to love their brothers and wanted to understand what was going on. Yes they get annoyed sometimes and yes there may be a quarrel at times but beneath that person with autism is family and that's the only thing that matters.
I didn't give a presentation in the younger group session, but was available for questions and I must say the questions these 3rd graders and younger asked were very relevant and heartfelt. While I would be answering questions, I would also be giving a small portion of my presentation. This made me nervous because I am highly uncomfortable around people younger than me. I always have been because I don't know how to act or talk or what words to use. I guess I have always been this way, even around people my age and this would explain why each year's teacher in school was the person I talked to most.
My fear of speaking aside because this post is not fully about me; after Ann introduced me I started talking about my younger years and struggles I had with school. I was having a hard time deciding what to speak of next so Ann was a great guide as she knows my presentation and example quite well. The first thing she had tell was the story of breaking up with my girlfriend on Christmas and the group got a kick out of that.
Also on this night several parents were in the room to listen to me as well and after I was done with my preset presentation it was time for questions. I never know what to expect in this and am always worried that nobody will have a question, but that wasn't the case as I had some of the most interesting and well thought out questions.
When time was up I was actually starting to feel comfortable. It helps though when the group has an understanding of the spectrum with a thirst to learn more. I have said on this blog several times that understanding is the foundation of hope and a program like this sibshop is doing just that. By sharing their stories with each other and hearing perspectives of those on the spectrum the brother or sister they have becomes more real, if that makes sense.
I was having trouble figuring out how to end this, and there is only one option I have. I sent Ann an e-mail yesterday asking for a little more info about the program and how long it has been going on and there's one paragraph she wrote that sticks out:
I believe the need for the kids to connect with other kids needs to be at least monthly. The issues they talk about in the group generally are not things they would typically share with their friends as their friends do not understand or relate to the issues they experience daily. I believe very strongly that even if a child does not talk and open up in the group there is still a feeling of comfort knowing that others are in the same boat and they are still benefiting from listening to the other children and how they cope.