We have tried everything. What would you do in my shoes?
Bites have left bruises all over M’s mother, including her legs.
By Carrie W
We are going through hell.
I am hiding from my severely autistic daughter, M. She is in my room, where she is most comforted, however, I can’t risk being with her, she has attacked me, bit me, countless times, and is ready for more.
The other day, I fell asleep with the door unlocked, exhausted from the trauma and aggression. M came in, and sat on the bed. I immediately jumped up to make sure she was not going to bite or grab me. I quickly cleared everything off the nightstand knowing she would move everything the floor. Surfaces need to be clean for her when her OCD is so out of control.
So I left the room. I just wanted to go down to the kitchen and get a ginger ale. But she followed me and immediately grabbed her shoes, signaling she wanted to go for a ride. I couldn’t take her. I would have, but was feeling nauseated. This is NOT good. We know what will happen next.
Will she launch into another rage? From here I can’t get safely to a room to lock a door. She is so strong and injures us severely when she bites. Thankfully, she goes back up to my room. And I quickly go back into hers, and lock the door. This is NO WAY TO LIVE IN YOUR OWN HOUSE!!!!
Her father ends up taking her on a ride. I text him asking him to try taking her to the playground. Maybe she can run around and get her energy out. But the ride is brief because M doesn’t want to go when they arrive. She waves her hand in a certain way which means she’s irritated and to move on quickly. They arrive back home after the drive-through at McDonalds. Okay good, I’m thinking to myself, she’ll be okay. She went on a car ride. But she is not okay. She has another aggressive episode.
From downstairs I hear loud slamming and I know something is wrong. My heart is pounding. I don’t know what to do. I hear footsteps running up the hallway and a door slam. Then I hear M trying to pull my door open furiously. She’s very angry. I get a text to stay in the room. My son receives a text to stay in his. And for the first time, her father has now locked himself in the bathroom. This is now our safety plan.
We then hear our dog Stella bark in a very angry manner. This startles all of us. But mostly my son, who is now crying. He opens the door worried that M has hurt the dog. His dad is trying to calm him, to get him to stop crying, because this makes my daughter’s aggression worse. We quickly bring Stella in with me and we all go back to our rooms, locking the doors. We wait. Finally, we don’t hear anything and her dad goes to check on her. He and my son are furious with me. Why did I let her see me? Was this the trigger? I feel terrible, and if I could jump out the window and run away from this, I would. But I can’t.
The good news is that we have found a residential placement for M. But it’s more than three weeks before she can move in and we don’t know how we will survive until then. The trauma has taken its toll. We are all walking on eggshells, not knowing when she will have another meltdown.
M’s meltdowns are severe. First responders, ER staff, hospital staff have all witnessed her rage episodes. When she has these attacks she is a danger to herself and to others. She will bite and attack with sheer rage. And if she’s overwhelmed with this, she will also bite herself. She stopped these self-injurious behaviors months ago when she was at a group home. But now she has started injuring herself again. I am so frustrated and upset for her.
Do I leave and go to a hotel like I’ve done before? No, I can’t do that. At this point, her father cannot be alone without my help. He now has motocross protective wear, like body armor, to protect himself. I do not do much in the bedroom with the door locked, but I can at least call 911 if he needs help.
Before you judge me, I ask, what would you do in our shoes? And are you willing to come to our house to become a caregiver for our daughter?
Carrie’s husband’s new protective gear, as recommended by a police officer.
My heart breaks for M, but we cannot do this alone without more assistance. But, for at least now, there is none. And we won’t put her through another Emergency Room visit only to hear once again, “She can’t be admitted to inpatient psych because she has autism.” She has already been discharged from a program by a system that works against the families, instead of for them.
My heart breaks for my son as well to be living his childhood and adolescence this way.
I am tired. I am drained. I want to fight this and send email and letters to all the people in government and county who look the other way. I will fight for more crisis care centers. But right now, at this very moment, I am overwhelmed. We are just trying to get through another day. One day closer to her being admitted to the program. One day closer to getting her help she needs. And the help we will all need after going through this.
Carrie W is a pseudonym for the mother of two children, one of whom has severe autism.