I’ve written about my brother in two other posts so far (here) as part of a 3-blog mini series learning more about him and Autism – check them out if you haven’t already!
My brother and me. We’re pretty cool.
In the previous two posts, I wrote about the assistive technologies and therapies Nathan uses, and in this last blog post I want to share a more personal story about what it is like living with someone who has Autism. My mother kindly agreed to share some of her thoughts (which I’ve written in her voice):
- I learned to live a more humble life.
Before Nathan was born, I lived comfortably. I worked hard, earned a PhD degree, had a successful life. Life wasn’t “perfect,” but everything was good, nothing was too hard. JoJo and Rebecca were both smart children. But after Nathan, I was no longer bragging about things.
- I learned what I can do is very limited, and sometimes I must rely on others and ask for help.
I’m really thankful that Nathan gets to be in America. The American education system is good. It respects people with disabilities and its education aims to allow people to have the same rights as anyone else so they can lead an independent life. You can try as much as you freely can as a normal person. So I’m glad Nathan is part of this system.
In a lot of other places, children with disabilities may not get to go to school, and rarely get a chance to leave the home. But here [in America], it feels like there is a social environment that accepts people with disabilities.
America’s bigger community is very accepting, but in the smaller view of the community, not many understand what it’s like to have a child with disabilities in the household and not many try to understand or even are aware. A mother raising a child with disabilities has a lot of difficult times, and a lot of times it’s a fight not with Nathan, but with myself.
Sometimes it feels like the fight is alone and therefore it becomes a fight against myself. There are inevitably sometimes long periods with little or no progress. And these can be very difficult and sometimes they feel hopeless.
- I realize a lot of people are willing to help, eager to help.
Continuing on about American society, I’m thankful that people respect human rights and equality of all people as common law. People like the students in this technology class who are creating tools and toys that can make the lives of people with disabilities different and better. I’m really glad they exist.
Listening to my mother speak about her experience raising Nathan reminds me that there is a lot of patience involved in searching and utilizing assistive technologies and therapies for any kind of disability.
Taking 6.811 has put me in contact and learned from many people whose lives are affected by a disability or a loved one with a disability, and I truly respect and admire them.
Many people have come up to me and said how much of a role model my mother is to them, and I’m very proud of my mother for everything she has done for my brother and us, even though there were (and are) many difficulties along the way.
Note: This was a very difficult blog post to write about and speak to my mother about emotionally, but she made a point to have me write out what she was saying because she wants more people to understand what it’s like to be in her shoes. I hope that in the future, I can take care of my brother as well as my mother takes care of him right now.