“If he moved in with me, not only would I live with constant danger and isolation, but I would also face financial and social ruin.”
A sister fears her own future will be erased, overwhelmed by the demands of caring for a brother with severe and profound autism. Stock photo.
Editor’s note: this is the second in a two-part series by Carla. Please read the first installment here.
By Carla S.
I distinctly remember the day I received papers from my mom. She had just finished up guardianship proceedings for my twin brother, Tim, who has severe autism.
There in a thick stapled document, it said I had conservatorship (what California calls guardianship) of Tim when my parents were to pass. I was a teenager when I received these documents, and it was overwhelming. I have a child without ever having a child, I have responsibility to take care of my brother, and that is scary.
Growing up with Tim was traumatic. Moving forward, it’s even rougher to envision a future. For my entire life, my mom always told me that responsibility for Tim would not be put on me. However, growing up and seeing my parents still caring for Tim, them getting older and tired and him being more physically imposing and hostile, I have had thoughts of “what if.”
“What if” something happened to my parents? I would stop everything in my life and help with Tim. Thankfully nothing has happened yet, but for a while, I was bracing for that call. That call that my brother hit my dad a bit too hard, or my mom was not able to run away fast enough, and I would have drop everything in my life and help. Put everything in my life on hold for my family. Even if my parents told me not to come and help, I would be there in a heartbeat.
Looking into the future should be fun and freeing, as the possibilities of the world are limitless. However, looking into the future for me, there is lots of uncertainty. This uncertainty is anxiety inducing.
My parents are incredible people who say I do not have to worry about my brother’s future. That I will have my own life, and that Tim will live in the special-needs home that they have created for him. But I also have no idea how to take care of his financials, his health, and everything else associated. The worst part is that no one else knows how to fully do it either because Tim cannot tell us how he feels, like if a body part hurts or what he needs in any certain moment.
And what if he were to lose his special-needs housing? I cannot personally handle him, and I think he would end up in a state system, and I would feel tremendously guilty.
If he moved in with me, not only would I live with constant danger and isolation, but I would also face financial and social ruin. I cannot live like my parents, confined to their home with someone who constantly beats them down and requires their attention. Would I be able to work? And if so, only to come home to extreme caretaking in my off time? My parents set aside a special needs trust to help with Tim’s care, but autism is insanely expensive. I will not likely have the financial resources we would both need over our lifetimes.
“Not only do I fear having guardianship over an adult with severe autism, but what if I had a child like my brother? I am certain I could not endure raising another child with autism, on top of the fears I have about being Tim’s guardian as an adult.”
I fear not being able to have a life of my own. Can I be a normal person who engages in self-discovery, hobbies, interests, job changes, love, travel, etc.? One of my goals is to travel the world, and I mean every country, every continent, but will I have freedom?
The anxiety goes on. Not only do I fear having guardianship over an adult with severe autism, but what if I had a child like my brother? I am certain I could not endure raising another child with autism, on top of the fears I have about being Tim’s guardian as an adult.
Would I be able to find a partner who would be accepting that I come with a Tim? If I knew what I was getting involved with as a potential partner, I do not think I would do it. Especially if Tim had to live with us.
I am also stressed out that Tim will not be happy. That he thinks that everyone he loves has abandoned him in a home. That he will feel even more socially isolated than he already felt. That this new home will not be good for him. That he will never be able to adjust.
Despite the pain Tim has caused me, I do have to unconditionally love him. There is no other person who I would love unconditionally, because personally I believe love should come with conditions. However, for Tim, I need to remind myself that without me, he will have nobody.
His condition is also debilitating for himself, never being able to express his feelings, or being able to manage his emotions, or talking. It is a frustrating life that I have so much sympathy for, but I still need to remind myself to unconditionally love him, and that makes me feel extremely guilty.
I want to run away when I see him, but I also hope to help contribute to a life of his that is worth living. I also hope I get to live my own life, away from him, and seeing him when it’s good for both of us.
Carla S. is the pseudonym of a young woman with a twin brother with severe and profound autism. She grew up in northern California. This is the second in a two-part series.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.