As you may know I have two younger brothers whom I refer to as "A" and "C". A lives at home with my parents but C lives in what many would call a group home.
There are many different opinions about group homes and the word "segregation" gets thrown in there sometimes. While I acknowledge group home settings are not right for everyone; even within my two brothers this is evident, for some it can be the best fit for them. I am going to split this post into to parts: Part 1 will be about how we came to to the decision for him to move to his current home and Part 2 will go into a bit more about what it is like now. Let's get into it shall we?
My brother C was one of the most quiet kids you have ever seen when we were little. He did his own thing and didn't get bothered too much. However, as he got older and his needs started to get more complicated so did his behaviours.
At the time we did not know it but C was experiencing many different types of seizures on a daily basis. He had "grand mal" seizures when he was younger and occasionally when he was older but he was also having "petit mal" or "absence" seizures which are not always detectable from the outside. The full discovery of these seizures would come a little later. The absent seizures as well as some other smaller types of seizures were causing him to have trouble concentrating on tasks or remembering what he was doing. Coupled with some of his restrictive behaviours, he was having trouble communicating in ways that were sometimes aggressive. He would want to watch the same few minutes of a movie over and over and would not want to take a break, or he would insist he had to eat the whole loaf of bread, for example. We were managing but it was very difficult at times.
It was hard not to feel like we were doing something wrong. I often wondered why this kid who was always my little buddy was now not wanting me to talk to him or snuggle him and would hurt me. I know my parent's were feeling this strain too. They were struggling with what to do because it felt like all the old strategies were not working but somehow we had to keep trying to live our daily lives. In talking to one of our service providers they said "It doesn't matter why he is hurting you. If he is hurting you, it is not ok". This did not mean we did not want to figure out how to help him, it meant that you shouldn't settle for being hurt just because you know he doesn't mean it and we should find out what's wrong so it doesn't happen anymore.
In the end he was referred to a specialized program that would allow them to address his physiological needs, like his seizures and subsequently needed treatments, as well as helping to learn some more affective communication skills and self care skills. This program was able to do wonders for him. We were able to visit him frequently and they kept up constant communication and asked for my parents' input before any new techniques or tests. They were able to do tests that would have taken a long time and many referrals for us to get and they were able to have trained staff test different methods of communication with him to figure out what would work best and to figure out what his triggers were for any aggressive behaviour so they could find ways to help him feel more in control of his environment and therefore more calm. It ended up C was happiest when he had a pretty strict routine that in essence involves him completing a task and then getting rewarded. These tasks could be things like completing a puzzle or doing a school like learning task but it could also be doing chores around the house or engaging in self care routines. Rewards would be things like listening to music or getting a show or whatever he wanted to do at that time. A strong routine in combination with using PEC symbols (small symbols used to represent wants and needs. I will include some example pictures at the end of this post) allowed C to feel that he had control of his life and his decisions and he seemed overall much happier. Following all of these routines in a controlled environment with trained staff went very well and they were so happy with his quick progress that it was time for him to come home.
Now as you can imagine keeping a to a strict routine at home and when he went back to school wasn't always as easy. Having to go to work, keep up a house and take care of my other brother proved to be obstacles to being able to always have C on routine. Not always having consistent support at school and then general changes that need to happen on a daily basis at school made it hard to do it there as well. Old habits began to come back. The feelings of failure and guilt were beginning to mount. He did so well at his program, why couldn't we do that here?
I can say with absolute certainty that both my parents and the workers who would frequently come to try to help did everything they could for C and they made every effort that they possibly could to keep up with his new routines so he would be happy and comfortable at home. But in the end after quite a bit of time passed everyone knew that something needed to change.
By this time both my sister and I were out of the house and A was at home too, having graduated a few years before C, so all of the tasks involved in taking care of both my brothers on a daily basis were falling to my parents and support workers when they would come and my sister and I when we could. In the end after many agonizing discussions with service providers about how to make it work at home and an absolute herculean effort on part of both my parents it was decided that now that C had graduated from high school some time ago that maybe being at home full time wasn't the best for him.
He was referred to a group home and after many back and forths about whether this was a good decision or not he moved into a new home with a boy that had been in his high school class and another boy around their age and the next chapter of his life began.
Now, I know after reading all of this that people will have different opinions about whether we made all of the right decisions. Some people would say we should not have sent him to the specialized treatment program and others may say that no matter what you should keep your kid at home. I respect your opinions and I understand them but in the end you don't know my family the way we do and you don't know what C needs the way we do and that is true for everyone. I don't know your story any better then you know mine.
I can not count how many phone calls I had with my mom talking with her about how upset she was. How she felt like she was sending her son away. How she had failed. I would always ask her if she felt guilty when I moved out to go to school or when I moved in with my husband. I asked her if she knew something was the best for me if she would hold me back even if it meant that other people would have nasty things to say. She said no. In the end C can't advocate for himself in the same way that I can but no one in the world knows him better then my mom and dad do and no one in the world wants more for him then them. I believe with my whole being that they did and still do the best for him and that none of us could ask for better parents then them after all that we have been through together.
We weren't sending him to an asylum where he would be locked away and we could never see him again. When there is not a global pandemic he would come home once a week and we could go and see him and take him out with us whenever we wanted. He is living with boys his own age and he has staff there who respect him and take care of him but also let him continue to be his own person. We didn't send him away, we just let him find a place where he is happy even though it was really hard for all of us to do so. I think that is pretty awesome.
Is it hard not having him at home especially right now when we can't visit the same way as before? Of course. They even gave us the option for him to move home for the duration of the pandemic but it was decided he would be better off to stay there and for now they would have weekly zoom calls with my parents and outdoor visits when they could. So yes it is hard, but I am also comforted by the fact that I know he is living somewhere away from home where he is safe, cared for and happy, just like me.
So there you have it, the journey of how my parents made the decision for C to move to a different home. If you want to have a respectable discussion about all of this I am happy to talk about it or answer any questions. But I will not pretend I am any sort of expert or that I know what is best for you and your family as every family is different and everyone has different needs.
Thank you and please check out my new instagram account where I post about autism, anxiety, motherhood and whatever else comes along @anxiousautismsib
Examples of PECS
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