[Editor's note: This piece was written by a Bay Area mother in the form of a letter to her son, a young man with autism who at times exhibits aggressive behaviors. Above is pictured a hospital room where her son, having had a behavioral crisis, stayed for 30 days, due to lack of any appropriate residential care placement.]
By Irene Litherland
We missed Valentine’s Day last year, you and I. After eighteen years of hearts, candy and love, we missed #19. Instead you were in the emergency room that day, having slept there, and/or paced anxiously, the night before. It was hard to find out just how you were doing, so many layers of judgment heaped on top of the limited answers from hospital staff, when they could be reached at all. We were a family torn apart in ways that most families cannot begin to imagine.
It was temporary but was wrenching and deeply painful to me. I cannot begin to imagine how it felt to you as you managed that night with no one you knew in a strange environment. And then you somehow survived another 29 days and nights in the emergency room and the hospital! You are remarkable in your bravery, endurance and involuntary independence, even though I know it was extremely hard for you.
By Irene Litherland
We missed Valentine’s Day last year, you and I. After eighteen years of hearts, candy and love, we missed #19. Instead you were in the emergency room that day, having slept there, and/or paced anxiously, the night before. It was hard to find out just how you were doing, so many layers of judgment heaped on top of the limited answers from hospital staff, when they could be reached at all. We were a family torn apart in ways that most families cannot begin to imagine.
It was temporary but was wrenching and deeply painful to me. I cannot begin to imagine how it felt to you as you managed that night with no one you knew in a strange environment. And then you somehow survived another 29 days and nights in the emergency room and the hospital! You are remarkable in your bravery, endurance and involuntary independence, even though I know it was extremely hard for you.
| "The night before Valentine’s Day you got very upset and we called the police for the first time. They took you to the hospital. You weren’t sick though, so why did they take you to the hospital? That is a good question." | You, my beautiful, loving and lovable son, have so many characteristics. One of them is having autism. That is what helps you fully enjoy the present moment. (Do you know that many people have to try very hard to live that way? Yet you do it so very naturally.) Autism also makes it harder for you to express yourself. And when you are angry or scared, you sometimes react quickly by attacking other people. Since you are now big and strong, your dad and I can’t always help you and others stay safe when you get upset. The night before Valentine’s Day you got very upset and we called the police for the first time. They took you to the hospital. You weren’t sick though, so why did they take you to the hospital? That is a good question. The answer is hard to explain. It has to do with things that are not right in the world, of which there are many. One of the things not right in the world is that we do not have really good ways to help people with autism when they get very upset like you sometimes do. We know that you are doing the best that you can in that moment, and that you need help to learn ways to go from being upset to being calm again. |
I promise you that we and many other people understand this. But for some reason that I can’t explain we don’t have places to help you with this. So sometimes people like you end up waiting in the hospital or in other places a long time for a safe place to go to. And often those places do not help that much either.
All this hospital waiting and moving around does not give you what you need and we are trying to change that. We all have to talk with the people in charge, the people that work with the President of the United States and those that work with the Governor of California, and tell them that we need to do things better.
We need places you can go that really help you when you are upset, that can help our family stay a family while keeping everyone safe. We need places that help you be you, enjoy life fully with music and outdoor walks, the way you do most days, and also help you on the bad days. We can tell them all of this.
Someday, there will be places to help people like you.
All this hospital waiting and moving around does not give you what you need and we are trying to change that. We all have to talk with the people in charge, the people that work with the President of the United States and those that work with the Governor of California, and tell them that we need to do things better.
We need places you can go that really help you when you are upset, that can help our family stay a family while keeping everyone safe. We need places that help you be you, enjoy life fully with music and outdoor walks, the way you do most days, and also help you on the bad days. We can tell them all of this.
Someday, there will be places to help people like you.
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