I don’t know if everyone else does this or not, but I’m constantly questioning myself, my decisions, my perspective, my thoughts.
I try to think things through thoroughly before making a decision. I talk about things to get the views of others, I blog about situations, I vent and let off steam, I get angry and frustrated, but ultimately, I try to see any situation from all sides, try to understand the position of others, I try to compromise when possible, find solutions that will benefit everyone involved. It’s not always possible to benefit everyone, but it doesn’t hurt to try.
I don’t have all the answers, I’m always learning, trying to improve, but I do my best at whatever I tackle.
Lately I’m feeling completely inadequate. Actually, not just lately, but for some time now, especially in regard to managing my son’s program. I’ve chosen his aides, though I’ve always asked him for input and value his opinion, ultimately, it’s up to me. It’s been one aide after another, one issue after another.
Four of his aides have had major health issues which required extended time off.
I’ve arranged for his volunteer experience, advocated for him with the hospital where he works, the agencies we’ve used, the county office, his doctors, social security, etc. I intervene on a regular basis to protect him and promote the level of independence he is capable of achieving. We work on daily independent living skills at home, to some degree, every day.
I’ve tried to do everything I can to support and encourage him, to prepare him for independence. I often worry that there’s more I could do.
Lately, I’m getting a lot of unsolicited suggestions from my son’s most recent aide. I’m hearing a lot of “Mom should”, “Mom could.” Many of the things she’s suggesting are things I do regularly, though her suggestions make me wonder if she actually thinks I don’t do those things. I know she’s well-meaning, but it’s starting to feel more like judgment of my parenting and advocating than helpful suggestions.
Several times my son and his aide have encountered difficult or uncomfortable situations at the volunteer location. When they come home, his aide explains the issues they’re having. I immediately make contact with the volunteer coordinator. I’ve always followed up on my contacts to let the volunteer coordinator know when things have been worked out, when things are going well, if we need a tweak of an accommodation, etc.
Sometimes there are things that could easily be handled at the volunteer location, by the aide, in the moment. An example would be when they began reorganizing the department my son volunteers in. His aide interacts with the folks in the department when they are there. She suggested I call the person in charge of the department they work in and ask him to remember my son’s accommodation of a quiet room away from the folks who’d created an uncomfortable and somewhat hostile environment for him. Recently, after I told her I emailed the volunteer coordinator about continuing my son’s accommodations, she suggested I should go to the location, have a meeting face to face with the people of the department to make sure he’s going to have an accommodation going forward.
She’s there two days a week with these people. When she’s with my son I expect her to appropriately advocate for him. I’ve told her this. It would be nothing for her to simply speak to the folks she’s working with and remind them that my son needs continuity, consistency, to be successful.
Since November 29, 2016 I’ve emailed the Volunteer Coordinator 7 times, that doesn’t count replies to her responses. We’ve probably spoken on the phone at least 5 times. I’ve emailed the Volunteer Coordinator more times in the last five months than I did the whole previous year. I’m afraid we are higher maintenance than the typical volunteer and we’re constantly asking for accommodation, complaining about something. I don’t think it’s appropriate for me, as a Managing Employer, to go into a place of employment and speak to someone else’s employee, essentially circumventing their authority, this is why I communicate directly with the coordinator.
I feel as if I’m caught between doing what I think is right for my son and trying to meet the expectations of our new aide. I’m currently about to start a new back-up aide, so I don’t know what to expect when she starts accompanying him to the volunteer location.
I’m so tired of not feeling secure or comfortable with my choices, not because I don’t trust them, but because others create doubt. I wish there were other parents to discuss the situation with, who’ve had experience with this sort of thing.