Published on: April 28, 2015
You were 16 months old the first time you met your brother, Hayden. In a pink frilly dress you came to the hospital, more than likely not knowing what was going on, with a huge smile and your always cheerful bounce. You took a look at your brother, stroked your finger down his check, and that was that. Such a simple introduction. Who knew how much Hayden would change your life and our family?
Both of you had fun during your infant and toddler years. You played side by side and as the big sister you always tried to direct your brothers activities which he let you do for the most part. You loved your brother; gave him hugs and kisses all the time.
But things did start to change. You noticed it first with reading. At 4 years old, Dad and I were trying to get you to read and you loved it. Until…You saw Hayden reading a book and you said, “Hey, I’m the big sister and I’m supposed to be reading first!”
And so it started. You slowly began to realize that Hayden was different. I vividly remember you and Hayden playing. I was telling Hayden that he was starting at a new school – The Shafer Center. You looked up at me and said “Am I going too? That’s our name.” I told you it was a special school to help kids like Hayden talk more. Staring me straight in the eye you stated, “I’m not going to talk anymore so I can go to school with Hayden.” It was precious.
Fast forward a few more years, and we told you about autism. We had too. Hayden had just smeared his poop all over his room while taking a “nap”. You saw us cleaning and Hayden having a meltdown. You wanted to know what was going on. It was very upsetting to you and you were crying. How does a parent explain that to a 7 year old? I said that Hayden has autism which means he has a hard time making friends and talking. I explained that everyone has things they are good at and things they need help with; Hayden with making friends and you with talking too much. You nodded. Then asked, “How can I help?” From that point on you would say, “Hi, this is my brother Hayden. He has autism and I’m Serena and I talk too much.” You accepted Hayden and wanted everyone else too.
I have to say when you were little it seemed a little less complicated. It wasn’t easy but simpler. As you and your brother have grown up its gotten harder for you. You have made many sacrifices.
It’s hard when I tell you to go to your room because Hayden is having behaviors but I don’t want you to get hurt.
It’s hard when he gets prizes at the end of the day for being good but you don’t and you have more good days then he does.
It’s hard to invite friends over because you worry about what Hayden may or may not do and a lot of times it’s embarrassing.
It’s hard to have to follow his inflexible schedule and have every outing or vacation planned according to him.
It’s really hard to have a relationship with him and probably not the one you have imagined.
It’s hard to think about the future and that your responsibilities will always need to include Hayden.
It’s hard to feel like an only child with a brother.
It’s hard when Dad and I tell you to be quiet or adapt who you are in order to keep him calm.
It’s hard to feel like you don’t matter and even though Dad and I tell you that you absolutely do sometimes our actions don’t support our words.
It’s just really hard.
You have had to learn from a very young age that life isn’t fair. And I wish I could change that for you but I can’t. You didn’t ask to have a brother with autism but you do.
This is autism awareness month and while I think it is important to spread awareness about autism it’s sometimes even more important to be aware of those affected by autism. As a sibling, you are affected in many ways. As Hayden’s sister you understand better than anyone what autism is; the good and the bad.
I may not express it often enough but I want you to know how thankful I am for you. Your love for Hayden is pure and absolute. You want what’s best for him and have always been willing to sacrifice for him. You have a kind and generous heart and are always willing to help anyone who needs it. You care.
I’ll never know what it’s like to have a sibling with autism but you are the best sister anyone could ask for. You are an autism hero; not only to Hayden but to me.
By Helen Shafer- Founder at The Shafer Center for Early Intervention.