March 15, 2010

Growing up Beside Autism

My name is Marylyn. I am the eldest of three with a younger sister Emily who is two years younger & a younger brother Matt who is five year younger than I am.  My brother Matt was diagnosed with high functioning autism at the age of five. Christine asked me to post about what my experience was like growing up as a sibling of a child with autism. 

I remember the day that my parents told me that they were going to have a baby. For months every night before we went to bed my sister & I would pray with our parents for God to give us a baby brother or sister. That Sunday afternoon when my parents told us God had answered our prayer my sister & I danced around the kitchen so excited about the new person that was going to join our family.  Though so much of the process of being a sibling to Matt would be different, I look back on that moment with fond memories & rejoice that my feelings towards growing up with Matt as a brother resonate with my feelings that day. He in so many ways has given me passions & perspectives- he’s made me the person I am today. I’m so thankful to have Matt as my brother.

My sister & I grew up pretty independent. We would play on our own in the basement while my mom attempted to placate my brother, making an ever changing world align with his expectations of perfection & then deal with the inevitable meltdown when something went awry. So my sister & I tried to stay out of the way. My friend talks about how her brother always wanted to play with her & her sister, but Matt always preferred to play in isolation.  For the first ten years of his life, we could never go out to restaurants because he couldn’t handle waiting for his food to come out. I remember vacations were marked with attempting to keep track of his many objects that he was attached to. We spent hours searching for sticky lizards or chucky & listening to his sobs mourning a world he could not control.  My sister & I tried to be helpful & understanding, but there would be moments where life with him seemed overwhelming, when we wondered if he would ever stop melting down, if we could ever interact as a family.

As a sibling of a person who has autism, there are certain expectations placed on you from an early age. You grow up a little faster. You become independent a little faster, learning to fend for yourself. You are really flexible because you never know when your plans will change.

My experience as a sister of a boy who has autism was different than that of a parent.  My parents had expectations of what their family life should look like; I had no concept of a different kind of family- my family life is all that I’ve ever known. Thus while my parents mourned the loss of the dreams that they had for my brother, I simply grew up appreciating my brother for who he is – a wealth of entertainment knowledge who loves movies, pop music and root beer floats.  My parents dealt with the critical eye of other parents who at times made them feel like a failure for failing to discipline Matt or train him to behave appropriately. While I felt embarrassed by Matt’s behavior at times, I never felt like it was my fault- I don’t struggle with the same feeling of responsibility that my parents do.

Some common things have developed amidst both my parents and my sister because of our family member who has autism. All of us have become advocates. Though at times Matt drives my sister & I crazy, the minute someone from the outside attacks him, we are a united front. Nobody messes with our brother. My advocacy instincts kick into gear whenever I see a misunderstood people group or perspective.  We also are really comfortable with people and situations that make most people awkward. Whereas people often cringe at bodily functions, inappropriate behavior or lack of social skills, we are comfortable in those situations and adjust quickly. I can’t help but find people with special needs beautiful and their behavior endearing, even when it makes others uncomfortable. As a result, we’re pretty flexible. We’re used to holding our plans with an open hand, knowing things could change at any minute depending on how Matt is doing.  We’re used to having to make sacrifices for him.

Know this- your child has been given a precious gift in growing up alongside one of God’s special children.  I am so thankful that I grew up with Matt as my brother. Though I long for the day when Matt’s mind connects with his mouth, I am so thankful for the experience I have had in growing up in an environment that fostered advocacy and flexibility. I had the privilege of having a front row seat in seeing a picture of God’s redemptive work. I saw that sin is the cause of the brokenness that we see in war, in relationships, and in my brother. But Jesus in his great plan takes our brokenness and gave me something beautiful. He gave me a relationship with my brother. He gave me a love for people with special needs. I hope to be an occupational therapist someday because Matt inspires me to help other kids like him.  He gave me a family who I would not trade for anything. So remember that your children have been given a great gift in having a sibling with autism.