Dignity & Respect, Education, Equality

There was a time I thought I would be in a Group Home for Life

I have been reading blogs about parents of autistic children having the fear of the point that they would no longer be able to provide a safe environment for their children and have to have them placed in a group home. Twenty years ago, this week, I celebrated “graduating” from a residential treatment facility, or RTF. It felt like a group home, but if my parents didn’t want the best care for me, it could have resulted in me being placed in a group home for life because of my behaviors.

A year prior to that puberty was fighting its darndest, I was being defiant with my parents, acting out at every turn. Having supports didn’t help, they only made the acting out worse because when something become too overwhelming or oversensitive for me, I would act out. When I didn’t want to wait for something, you guessed it I would act out.

In the course of nine months, I was hospitalized five times in psychiatric wards. However, I was considered many times the model patient, they even prescribed me a host of medications, of which many were not helpful as they either drugged me or made me act out more with no effect. At the point of the fifth hospitalization it was determined that what we were doing wasn’t working and something had to change because I was being abusive to my parents, especially my mother, who was at her wit’s end.

She and one of my support staff were the ones who did the research, they got in the car and did the driving around the region checking out facilities, asking questions, compiling records needed for admission. Meanwhile, as I sat in the hospital while the local behavioral health office had other thoughts. Their thought was to shelve me away in the eastern seaboard or across the state. That wasn’t my parent’s intention at all. There plan was to figure out what was wrong with me and get me back into the lives of my family and get me back in the community.

Finally, a place was settled by the family 28 miles away from home and the local mental health office fought my mother tooth and nail until she had to fight to get what was needed. My parents had to push for immediate admission, which occurred and once I was there, I was the “model” resident, until the therapies began. I had a therapist who was very interrogating and asked the questions of how and why and knew that I danced around what I was truly feeling by playing a “game” with what was going on in my brain. However, she lived in my neighborhood, so you would say we grew a close bond. On holiday passes she drove me home and worked with my parents on the issues at hand.

Me being placed and acting out over the past year also did a lot of damage in my parents’ relationship between it to the point they had a different view of how I was acting towards each of them that it separated them for some time. This continued throughout the placement because my mother was in fear of my then-200-pound body of harming her because if something would flip my switch to the angry monster in my head that I would scar her again. My dad, because he is stronger than I could manage me and didn’t want to see me anywhere but, in their home, not shelved away in a group home. He saw the potential and as much as I discount him in my life, he is the reason I wasn’t shelved away twenty years ago with complete strangers.

I learned a lot while there about myself and others. They assisted with bettering my educational component and prepared me for the return back to my home school the next term. Many other areas I didn’t listen and it wasn’t a total change but they are responsible for me being on two of the medicines that help with the affects of my autism today, and for that I couldn’t thank them enough for that. I am finally glad that I got the understanding of the need to medicate regularly in my brain.

In closing, to anyone who feels that dumping an autistic individual at a care home of any kind is a feeling of unwantedness or a way of not caring about the autistic, please know as in my situation, in many cases it is a way of caring about the well being of the entire family by ensuring that all parties are safe in doing so. When parents such as mine did what they did, it was because they loved me and wanted me well and back in their lives as a healthy person.

However, for some it becomes to the point where a parent cannot care for their autistic full-time no longer. As in the paragraph stated above it is done for the same reason and isn’t a method of abandonment to the autistic. There will be visits, gifts and birthdays, etc. COVID has been hard on all of us meeting with our loved ones, and especially those in congregate settings like group homes which has become particularly difficult

In the end, its all about keeping your ENTIRE family safe.

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