The sheltered workshop has also been known to push me into Mama Bear mode. A couple of months ago I went in and carefully explained that they were unintentionally giving Daughter messages that were not helpful. She was picking up messages like she didn’t understand her diabetes, she was too complicated to handle, and that any attempt to speak up for herself (especially in regard to her diabetes care) was disrespectful and she needed to shut up and do whatever they told her, even if it was wrong. They were also panicking over normal blood sugars, confusing Daughter as to what constituted a dangerous low. She was being taught that her diabetes was a disabling disease that prevented her from participating in the normal activities of life.
After her experiences in the psych unit last summer, I’ve been working with the professionals involved in her care to encourage her to take more responsibility for her diabetes. We’ve been telling her it is her disease and that she is the expert on it. We’ve been encouraging her to take responsibility for it and educating others about it. We’ve told her she has a voice and can keep herself safe by using it in any and all situations, including when a medical professional is trying to do things with regard to her diabetes that she knows are wrong. To sum it up, the workshop was working at cross purposes with us, and Daughter was ending up very confused by all the mixed messages she was receiving. She wanted to quit the workshop.
I went in and met with them, and patiently explained that Daughter can handle her diabetes with minimal supervision (most of the time). I assured them she wasn’t going to have a seizure or die on their watch, and they could relax. I asked them to respect Daughter, and assured them that I was teaching Daughter to respect them and their rules, even though they are different from how we normally handle her diabetes. I reminded them that Daughter has severe Post-Traumatic Stress Disorder, and that she needs to know that she is safe at the workshop. I had several suggestions on how they could improve the situation. The first thing I asked was that they allow her to call me anytime she needed to. I said I would help her understand anything she was questioning, but that for her to feel safe, she needed to know that she could call me at anytime. In our discussion, I assured them that while she might test to make sure she really could call me anytime, once she learned she could, her need to contact me would diminish.
Daughter got off the bus the other day obviously agitated and upset. She said her life wasn’t worth living, and diabetes was destroying her, and generally ranting in a rather disturbing way. It took a while before she was able to tell me what had gone on. When she checked her blood sugar before getting on the bus (they feel it is too dangerous for her to ride the bus with a normal blood sugar and feed her anytime her blood sugar is under 120), her blood sugar was in the 70’s. At home, we don’t even treat her most of the time until she is under 70. They told her she had to have glucose tabs and cheese crackers. She asserted that her blood sugar was high enough that glucose tabs weren’t necessary and the crackers would be enough to bring her blood sugar up. They told her that wasn't what the doctor's orders said. She asked to call me. The staff member went and got the nurse, who informed her that she couldn’t call me and it wouldn’t change anything if she did, she had to eat glucose tabs before the crackers. To them, it was a little thing. To Daughter, it was shattering. She was told (again) that she didn’t understand her disease. She was told that she couldn’t use her voice to keep herself safe. She was told she couldn’t call me when she was feeling threatened. The irony of the whole thing is that if they had allowed the call, I would have told Daughter she was right, she didn’t need glucose tabs, but because they were so concerned for her safety they used different guidelines, and those glucose tabs would provide an extra safety net to assure she made it home safely.
By the time I had gotten the story out of Daughter, I was firmly in Mama Bear mode. I called and left a message on her case manager’s voice mail, asking her to call me. After I had calmed down, I composed an email that I sent to her case manager and the nurse, explaining again that Daughter needs to know that she can call me anytime. The case manager returned my call promptly the next morning. She brought the staff member and nurse into her office. I got a promise that all staff would be informed (again) that Daughter needs to be allowed to call me at anytime. There was a promise that they would offer Daughter an apology and reassurances that she could call.
The problem? I’m developing my own PTSD, and I’m not sure I can trust them. I’ll never tell Daughter that, of course.