I am mom to five adult children and gammy to 12. These are the gifts to my heart. My youngest son BJ (32 years old) has autism and intellectual disability and he will be the subject of today's story.
BJ's own personal version of autism makes him a difficult fit to many things. Things and places where one would typically expect him to be welcomed, embraced and served do not do any of those things. Our most recent experience with this was with day program services for adults with disabilities.
BJ “graduated” school at 21 and we entered the world of the day program. We chose one and, in my naïveté, I saw us all living happily ever after in day program land. Not only was there no happily ever after, there was instead a holy nightmare. The staff at his first program had no interest in techniques to help him through his moments, so in turn he was coming home daily with explosive behaviors. They not only did not help him but they instead used language with him that triggered his behaviors.
After daily phone calls and weekly meetings trying to bring resolution, we left and searched for a better fit. We thought we had found that fit but, no longer naive, I went into this one with eyes wide open about how it might go. Long story short, it did not go well. This time, however, instead of us making the choice to leave, we were asked to leave. They could not handle his behaviors. I had many times over asked for a 1:1 staff ratio to hopefully set him for success but was denied each time. We were “kicked out.” That’s how we ended up where we are today.
I am 63 years old and my husband is 73. We launched a day program that is registered in my name, but we run it together. It’s our program and BJ is the only participant. When it became clear that we had to do this, the responsibility fell completely to us to build it. We felt abandoned and overwhelmed at the task before us. We live in Connecticut and BJ has a budget that follows him. When he was in a day program, his money went to the day program. Now it goes to paying our staff. The monies go through a financial fiduciary so my staff get their paychecks from them. I am responsible for payroll, which is done on an online portal. I need to correct all mistakes and approve all visits. We used to use paper timesheets which were fraught for misreading and confusion. I am getting used to the portal but I don’t think I will ever love it or even like it. I am learning to peacefully coexist with it.
We are also, of course, responsible for finding our staff. To say this is easier said than done is an understatement. There are avenues to assist in finding people, but they rarely lead to success. As required by the fiduciary, there is a hiring process which is cumbersome and time-consuming with a lengthy application and long wait times. For this reason we are only interested in serious inquiries, but have been burned on many occasions with people expressing great interest, going through the entire process and then disappearing.
We currently have one “buddy” for BJ. We love him and he is great with BJ, but unfortunately he is also 100% the most unreliable human. His day is to start at 9:30 and on more than one occasion I have gotten a text at 9:25 saying he can’t make it. He has at times over the course of a month missed more than half his shifts. I’m sure I don’t need to mention the level of stress this adds to our lives, but I will. Appointments need to be canceled and plans changed. We then take our day and go through the schedule with BJ to try and maintain the flow. I’m sure I also don’t need to mention the effect this has on BJ, but I will. His anxiety rises and then we have moods to manage. On the flip side, he then gets comfortable with us doing his program and doesn’t want his buddy to come back!
As far as what his actual day looks like, it’s a combination of structured and casual. I am a creature of exercise and movement, fully believing that movement is medicine, so I try and build a day that is active and out and about. I try to fill it with activities that will be productive, meaningful and enjoyable. They start the day with a nice long walk. From there they go and do recycling. We are members of our local Facebook Buy Nothing group, and have been able to build a community of caring givers who donate their recycling for our cause. BJ is not able to hold a traditional job or live on his own so this has been a huge positive for him. He’s proud of his recycling job and the money he earns.
From there they go to the gym where he enjoys a couple of Zumba-type classes and the hydro massage chair. There are a few spots in town that have welcomed him and made him part of their family. The Verizon store lets him come and in and play on their stuff. The Subway has a special sandwich they only make for BJ. My husband tried to order it once when we were all in there together and it was a hard no. His buddy has a few friends who have their own comic and hobby-type shops. They are always happy to see BJ come and explore their treasures. They will usually at some point in the day stop at his buddy’s house and walk the dog and possibly catch a quick episode of "Amphibia." They also hit up many of the local trails and paths. His buddy is really very good at filling the day.
Right now BJ is living his best life. He has his 1:1 attention and is for the most part free from the triggers that bring on the behaviors. He still has episodes, goodness knows, but drastically reduced from what we used to have. He has input into what his day will look like, and his choices for what he would like to do are respected. For these reasons, yes it is worth it. I did not see myself ever doing this, but that’s what life is, isn’t it?
We have named his program and I had T-shirts made because I am that person. We call it Pine and Myrtle. It’s from a Bible verse that we read every morning: "Instead of the thornbush the pine tree will grow and instead of briars there will be myrtle."
In other words ... better days ahead.