Friday, March 2, 2012

Brothers and sisters

Having a child with disability affects everybody in the family. How could it not? It requires all that extra care and attention at least initially. Today I wanted to focus on the ones we rarely think of in this equation- siblings. It's not simply the fact that the parents dedicate more attention to one child, which try as you may, will come in some ways at the expense of the other. It's that when a "special needs" baby arrives the whole family life reorientates. The daily exercise schedule, any other therapies, preschool or school, the pick ups, the drop offs call for a lot of sacrifices from everybody involved. My parents decided to transform our entire apartment to fit that lifestyle. Having a stylish pad was not functional. We had grab bars and wall bars and exercise mats. And every inch of the apartment served as space for me to walk around in braces or crawl (when we briefly decided to try the Doman method) and that also included my brother's room. My parents have decided to include my brother as little as they could in my routines. Seven years older he deserved a normal childhood. But he had to grow up and mature quickly anyway. When one of my parents was in Budapest and the other was working he was pretty much left to himself. My mom stayed at home but when I wasn't in Hungary she put in hours and hours of rehabilitation a day. My dad worked a four day shift cycle when he was home, or he would make money abroad. And I would go with one of them to Budapest, for multiple months at a time (although during my one six month stay the would just fly in on the weekends). He was older and in communist Poland it wasn't uncommon for school age kids to wander by themselves after class with the house key hanging from their necks. Overall we benefited from having a stay at home mom. Still, I was unknowingly pulling the attention from him. Still, he was doing fine. He was smart and responsible and excelled at school. Only sporadically would he pick me up from school, we would argue and fight constantly with my mother often comparing us to the brothers from "The Wonder Years" TV show.

 I think the way how he didn't treat me any different because of my disability gave me a normal childhood. And I've seen families that worked differently. I've met brothers with age gaps as big as ours that seemed to be joined at the hip. Very affectionate, very caring, always interacting. Sometimes, the fully abled child would be slightly older. Helping the brother, assisting the parents, being involved in the daily routines becomes a task for everybody in the household. They become another set of hands and eyes. Back then my mom was really impressed with families like that, she would comment how we never played as nice. And I guess families as whole bond over being invested in helping the child become more functional together. Parenting is a difficult task and decisions in upbringing have implications either way. But I know we made the right choice. Not to say that my brother never helped me when I needed him, because there were times that he stood up for me to my school bullies or explained a physics problem, but the concept was that I wouldn't need him as much. We had our separate lives, we had our separate friends. I don't think it wouldn't be fair any other way. Why should his dreams and goals submit to mine?

1 comment:

  1. Thank you for writing this piece. Parents and siblings, as in your family, have such important stories to tell. I hope that your sharing personal stories encourages more people to share their own experiences.

    Families often feel so alone when they embark on their chosen paths when faced with the need to solve problems associated with disability. Writings like yours are sure to help them to feel less alone.

    Please keep the postings coming!