When autism parents are attacked in their own homes, constant 911 calls are not enough
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By Ellen N
I am a single mom in desperate straits. Last month I had to take my 18 year-old severely autistic son, I’ll call him K, to the ER due to his violence against himself and me. They almost sent him home like they have in the past, until he had a meltdown. Then it took 10 staff members to restrain him while giving 2 shots of Ativan and getting 2 sets of adult restraints on him to keep him and everyone else safe. It took about an hour and a half for the Ativan to kick in and calm him.
It is no longer safe to have him home—either for him or for me. He stayed in the ER until an emergency respite house could be found that would take him while we await residential placement. He has been in the respite house since mid-month. This is helpful — but I only have three weeks and then he is released back to my care.
I received a call from his case manager at the Office for Persons with Developmental Disabilities (OPWDD) stating that he had a meeting with a committee to get K into residential placement, and he was listed as a Level 1 priority, which means he is at the top of the list. This seemed helpful, but then he said he does not know how long it will take to find him a spot and he doesn't know how the process works or who actually does it. I still have not heard anything about a potential residential placement.
When I asked him what am I supposed to do to keep us both safe at home if there is no residential placement, he tells me to do what I did before, which was to call 911 and hope the responders take him to the ER again. Which is basically the same as saying “We will do nothing to help you.”
Last time I had to call 911 three times in two days before anything was done. The first time K was calm when they arrived so nothing was done. The second time the officer watched him hit me but claimed he was not a threat so wouldn't do anything. Finally after the third call an officer agreed there was a threat to K’s and my safety, so he took us to the ER. Luckily this officer saw the damage done to me and my car when he attacked me while we were driving back in March. So he knew what would happen if things weren't done to protect us both.
I had to have X-rays on my back and shoulder from the hits I took every day for the last year or so and do not have the results back yet, but know there is damage. And I fear what will come next.
Meanwhile, K’s doctor left the practice where he is a patient. So while all of this is going on, we had to go through an emergency process to fill his medications.
Last time I visited K he flipped out when he saw me and wanted to come home but couldn’t. He had to be sedated again, and since staff and I don't want him to go through that again we decided it was best for me not to see him while he is there. I call them every morning and night to see how he is doing.
This has been hell for us but I am also terrified of what could happen to me if he has to come home.
To make matters worse, I have not been able to work for over 10 years due to having to be home with K. I just sold our house and was planning on renting but since I don't have a recent work history, and no real credit because of his SSI being our only income for so long, etc., it is hard finding a place.
I am so frustrated. I never wanted to have to place him somewhere else so it kills me that I now have to for both of our safety. But I also, literally, cannot survive the endless aggression. I have no help from family or friends. Even the people who are supposed to help don't help.
Ellen N is the pseudonym of a mother of a severely autistic young man who lives in New York State.