The irony of my title is fascinating on several levels. It reminds me perhaps most of having a sense of control. With a head’s up on a situation that needs a thoughtful answer, I can usually work on a responsible solution. When my autistic son Luke was hospitalized , I was out-of-state and felt out of control of the circumstances. Fortunately I do not have a learned helplessness mentality. My fighting spirit keeps me positive and the idea of developing a problem-solving strategy to deal with life’s difficulties is no stranger to me.
A sense of personal control for my son’s outcomes is different these days with the added “burden” of the Department of Disabilities and a subcontracted home care agency assisting in making daily decisions for Luke. The frustration with this is the agency makes very little effort to ask for our opinion with some of those decisions.
Upon Luke’s release from the hospital on June 12th, he was taken immediately to a hotel to live. This was initiated by the state as a stop-gap measure until a permanent housing solution would avail itself. With a “shortage” of staff from the agency, Luke is monitored four days a week only. The other three days he is with his father or myself. Our hope is an apartment will be ready soon, but we have been told it may take at least a month. According to social services and Luke’s case manager, the apartment readiness is in the complete control of the subcontracted agency. In the meantime, the home care seems in no hurry to move Luke out of his hotel.
It is interesting when I try to give information to assist with Luke’s care, the staff direct me to speak with Luke’s manager and when I try to contact her I get no response. And yes I have tried several times. Case in point is his nine days with terrible food in his hotel refrigerator. Luke has had only hotdogs as his protein chose. Luke does not care for mayonnaise or ketchup and does not eat much bread typically. The bagged food in the back is a staff’s lunch. I did make a grocery list three days ago that has been ignored.
Thankfully Luke’s dad and myself have been buying good food for him to eat outside of the hotel. Luke does have a food card that allows the agency to purchase him healthier choices. I have had no explanation thus far why they have not taken Luke to the grocery store.
One important thing is that Luke is beyond happy being out of the hospital. The staff for the most part have been nice, although, their hands are tied by micromanagement. If I begin to speak with staff about ideas on how to take care of Luke, they do not listen and why should they as they are told to do nothing except what their supervisor tells them they can do. In fact I know this as truth as this is the email advice from management to me: “Please work with me on any concerns, questions and other things in regards to Luke and I will be the person to delegate things to the staff and to talk with the staff.” Yet, the staff pretend to not know anything and at times I have been told my emails are not going through to management. I “cc” those same emails to Luke’s dad who states he gets them.
I know Luke has rights. As his guardian and mom, I have not said anything unreasonable to anyone who has direct care with my son. I have asked for safe and proper care including physical hygiene all the while assisting Luke on making wise decisions. One of those wise decisions is no sugar filled caffeinated cola at 9pm at night. I know I know–you are thinking this is all common sense. Yep. That is what I thought you might be thinking. ( Note my sarcasm if you can). Again I ask of you my readers for your kind thoughts and prayers as I navigate a horrid system that does not seem to be getting easier. I wonder am I throwing all my thoughts away? Will I ever be invited to Luke’s table of advisors and heard? Will they ever hear my pleas? I only want my thoughts joining their own thoughts. I need the help to give Luke some independence, but will those that help not listen?