Most people don’t think about how difficult it is for a child who has a special needs sibling. This is something I’ve been very aware of though with Ty since Stone was diagnosed with ASD just before the twins turned 3. Even though they are twins, Ty and Stone didn’t play together when they were younger. It’s only been recently that we’ve seen an increase in interaction between them. But in many ways Ty has been almost like an only child, with no sibling to talk to or play with through much of his childhood.
Add to that the pressure and awareness that comes from having a Special Needs sibling. Ty was 5 when he first asked us “What is Autism?” He’s told us that at school he’s had to defend Stone when other kids ask Ty why he’s so different. He’s accompanied Stone to countless speech and OT therapy sessions, always patiently waiting with Renee or I in the lobby while Stone goes through his paces. And Ty is always excited the minute Stone emerges through the door.
I think most parents who have multiple kids probably worry about playing favorites or devoting too much time or resources towards one sibling over another. This sensitivity is heightened exponentially when you’re the parent of a special needs child. Given all of the extra needs that are required, it would be very easy for the typical child to feel neglected or misunderstood. This is one reason why it’s important to me to be as involved as possible in Ty’s youth sports. I want to make sure he has time with me that is his own and has nothing to do with Stone or Autism.
Sometime in 2014 I became aware of a program called “SibShop” – provided by the wonderful organization Northwest Special Families (the same group that organizes the Special Santa program we’ve attended the past 5 years). The goal of SibShop is to provide an opportunity for kids who have special needs siblings to get together with other similar kids and learn simply they aren’t alone. Being a special needs sibling is a club nobody volunteers to join, yet it has its own unique and special characteristics that only members can best understand. So I signed Ty up for the shop last Fall and explained the concept to him.
On the day of the event, Ty was understandably nervous and reluctant to attend. He asked a thousand questions about it as we drove to Kirkland after school. The program features teen counselors (who also have special needs siblings) and adults who organize activities for the kids, who range in age from 1st through 6th grade. I signed Ty in and watched him walk apprehensively into the room. I was told I could pick him up in 3 hours – parents aren’t allowed to stay. This is truly the kids time to be with each other.
I found a local sports bar and watched Game 6 of the World Series while tackling some work via WiFi as I waited to pick up Ty. I was curious how it was going and hoping it was a positive experience. When it came time to pick him up I was thrilled to find an extremely excited and happy Ty greeting me. After signing him out I asked him if he liked it and he gave a very enthusiastic YES! He said that it was so much fun – and that he became so relaxed during a yoga session that he almost fell asleep. The event and experience was a resounding success and Ty said he couldn’t wait until the next SibShop (which happened to be last week – and again was a huge success in Ty’s mind).
Heading into the most recent SibShop Renee and I had noticed an increase in complaints from Ty about having a brother like Stone. He talked about how it was hard that Stone wasn’t interested in playing Minecraft or other activities with him. But since last week I’ve noticed a change in Ty’s attitude and interactions with Stone. He’s now trying to facilitate interaction even more on his end – from asking him questions to trying to get him say word or identify objects. I sense that Ty has accepted a new role as Stone’s twin brother and that he understands the situation better (or at least differently).
SibShop is exactly the kind of program that we need more of within the Autism community. Far too many families aren’t aware of (or able to access) these kinds of programs – most of which are created and managed by small organizations that are fighting for every funding dollar they can find. This is why I get annoyed with Autism Speaks. For all of the millions of dollars they raise through their very effective marketing and awareness-building campaigns, the bulk of their money goes to huge salaries for executives and genetic research. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and families. Many families impacted by Autism do not support Autism Speaks – if you’re curious why, simply Google “Autism Speaks Controversy” or something similar and you’ll find plenty of examples.
But the point of this post isn’t to vent against Autism Speaks, it’s to applaud Northwest Special Families and other local organizations like Washington Autism Alliance and Advocacy for the work they do for families like ours who are impacted by Autism daily. And SibShop is a terrific example of a program that has directly helped our family (especially Ty).