March 19, 2010

Growing Up Beside Autism: Part Three

Today, Marylyn writes a post to siblings themselves. This will be her last post. Thank you, Marylyn, for your wonderful insight this week!

I don’t remember when my brother Matt was first diagnosed with autism; instead, there was a gradual realization that our family functioned a little differently than most of my friends’ families.  Most families could go out to eat at a restaurant without their younger brother screaming until his food arrived.  Most families didn’t spend the day after Christmas at the hospital waiting for EKG results.  Most families don’t have to see the next showing of a movie if they show up five minutes late, missing part of one of the previews.

When I was just with my family, it was hard to see the difference in my brother. He was just my adorable little brother who would preach a sermon to the Guess Who people, climb the dog leashes with his bike helmet pretending the couch was the mountain in the McGee & Me movie, & sang into the toilet “I’m wishing” pretending it was the well in Snow White.  But as soon as I stepped outside of our little family bubble, Matt’s differences were noticeable and they only grew more pronounced as he grew older.  He became less adorable as I grew tired of his meltdowns, constantly having to adjust my mood & expectations to fit his limited flexibility. At times it seemed like there was always so much ground to make up, like he was taking one step forward & two steps back.  It didn’t seem fair than when he clearly had been in the wrong, I had to apologize to him to get him to stop screaming.  It didn’t seem fair that when I clearly deserved an apology, I would never get one.  It didn’t seem fair that Matt demanded the time & attention of my parents, and when they were tired or frustrated, I was responsible because I hadn’t cleaned up the kitchen or done the laundry.  It didn’t seem fair that when Matt was having a bad day, we all had to walk on egg shells to avoid upsetting him, but that when I was having a bad day, Matt would act no differently nor I could I expect any sympathy or slack from him.

My parents would tell my sister & I all the time that Matt couldn’t help it, & they were right.  He couldn’t help himself.  But those words didn’t change the fact that life just didn’t seem fair.

As a sibling of a child with autism, life just isn’t fair.  Your parents’ treatment of you & your sibling will not be the same.  You will be expected to grow up a little faster, become more independent, be flexible.  There will be times when life will seem unfair.  There will be times when you wish your life was different, more simple.

But the thing is you also have been given this great gift. Growing up with Matt as my brother has been one of the biggest blessings of my life.  I am a more loving & accepting person because of Matt.  I have a great love for children with special needs, & I am incredibly comfortable around them.  I embrace them with all their quirks because I grew up accustomed to behavior that was just a little different.  I love going out to eat because for so long we couldn’t!  The best thing about growing up with Matt as my brother is that I have Matt as a brother. Matt is witty & hilarious. He is so passionate about entertainment & pop culture. He has a great laugh. I love my brother so much & would not trade my relationship with him for anything.

The best part about having a sibling with autism is that you get a front row seat to the redemptive work that God does.  I love that God took autism which made my life so frustrating & made it into something good. Something I’m so thankful for.  But that’s what God does. He takes our brokenness & turns it into something beautiful.

Advice on how to embrace having a sibling with autism

  • Acknowledge that it is difficult. At times you have to make sacrifices, be it of the time & attention of your parents, relationships with friends, or experiences. At times it’s embarrassing to have a sibling who struggles to fit in.  At times having a sibling with autism seems like an annoyance without which life would just be better. Talk about how it’s hard. Denial will just breed frustration.
  • Laugh. Sometimes your sibling is going to do or say some ridiculous things. And all you can do is laugh. Learn to laugh at the things that happen in your family.
  • Read the book Rules by Cynthia Lord. It is written from the perspective of a sibling who has a brother with autism and details her process of going from denial to acceptance of her brother and consequently her family.
  • Find something that you can connect with your sibling and run with that. For Matt, Emily & I, that is music, movies & facebook. I attempt to make every effort to bond with Matt in the ways that he can, even when they are limited.