Guest Author - Bonnie Sayers
I knew this day would come. I could see it down the road many years ago. Here it is the same week my nonverbal son Matthew turns seventeen and I almost called 911 for help. Instead I called the Regional Center coordinator and left a message. This was the second time in a week I requested some information on an emergency plan. I need to be prepared for what to do in case Matthew gets so out of control I need help from an outside source.
It turns out the call for me to make in any emergency with my son is 911. There are no steps to follow or plan to memorize. I learned that the police would most likely call the Psychiatric Emergency Response Team. He could be placed in a Hospital for up to 72 hours with Insurance coverage. They would do a psychiatric evaluation and put him on medication.
Matthew is already on an antipsychotic medication, but an adjustment in dosage or a change in medication is much needed at this juncture. About ten years ago when I was busily reading blogs and articles on the topic of autism I foresaw this happening around the age of seventeen.
In the past several months we had toilet training therapy take place in the home and this seemed to exacerbate the behavior issues with Matthew. Placing demands and changes to his routine with strangers did not bode well. I can place the turning point when I started fearing being around Matthew to a time when a female therapist was here on the weekends. She was not following a set routine and decided on the spur of the moment to go to the grocery store to see how Matthew would handle the situation. I was in the living room talking to my other son when Matthew came in and slapped me so hard on my back that it knocked the wind out of me and caused me to have an asthma attack. The therapist had told him to do something and he came in and took his frustrations out on me.
We switched from adaptive skills to the behavior division of the agency because that therapist reported both times Matthew attacked me, even though she provoked them both. They said his behavior needed to be addressed so a new Supervisor and two therapists came for the first appointment. We were told it would be just one therapist. Having three people in the kitchen while trying to get Matthew to eat his dinner resulted with my head being pushed into the stove. I had to request the male therapist to pull Matthew off of me.
One other session resulted with Matthew knocking me over causing my ankle to be sprained and in severe pain for days. I told the therapists and supervisor I did not feel safe around my son when they were in my home. At the end of the four month session I opted not to continue the therapy.
Summer vacation is here and no routine for Matthew to follow. Anything and everything seems to set him off. I feel like I am on edge constantly waiting for the stomping and screaming to start. I do not like the person I have become and feel guilty for wanting him to live elsewhere. There are days I am not even sure I will survive through the end of high school, which for special education students is 22.
I find it hard to focus on anything until he is asleep, plus the noise level can go from normal to unbearable in a split second. When school is in session the mood in the home changes the minute that bus pulls up and Matthew slams the door. This is not a peaceful existence. I feel tense when I am at the stove wondering if he is coming up behind me and now I am nervous whenever I have scissors in my hand. The only way to clear my head is to go for walks when he is sleeping. I hesitate to be in the same room alone with him when I am alone at home with him.
Now that I know the only alternative is to call 911 I need to face the fear and deal with the behaviors. The brochure for the Emergency Outreach Bureau in Los Angeles lists training to school personnel, parents and students. I will be calling their hotline again during business hours.
I have already left a message for the Pediatrician to get a psychiatrist referral for an evaluation. I am still hopeful for better days and know that summer school starts in a few weeks. The Coordinator informed me that parents have said they should have called 911 years earlier because they got the help they needed like an evaluation and medication change.
Just this month there was another murder in the autism community. Several years ago I stopped reading about autism online and focused on my own identity and interests instead of making autism the focal point of our existence. As the sole provider to two teen sons on the autism spectrum I removed myself from the autism drama that is online between all the different sides of the spectrum on the causes and issues that make headlines. I was not aware of any of the stories pertaining to this family beforehand.
When I shared about the Mother and caregiver killing Alex to my high functioning son he asked me if I would ever do anything like that to Matthew. I told him there were times I wanted to run out the door and just get away and other times I wanted to open the door and tell Matthew to get out. I was honest about how tense at times it feels dealing with Matthew but violence has never entered my thought process.
Now that my son is eighteen I am relying on him more to help out with Matthew and his rages. We will devise our own emergency plan so we can get through this transition into adulthood and teach Matthew some more life skills in the process.
Behavioral Emergencies in Autism - YouTube video
Crisis Intervention - in Los Angeles