Here’s what I have to say about that.
Anna started her period yesterday. This makes her uncomfortable both physically and otherwise. She misinterprets cramps for hunger and seeks food. Also the weather affected the day, with thunderstorms and low barometric pressure. Anna feels this in her body and also seemed disappointed the sun had gone. When I offered Tylenol, she readily took it.
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During lunch, Anna got up and went to the garage but Sara directed her to eat first. This was upsetting for Anna. Because she can’t talk, she expresses her feelings physically and with sounds. (BTW, I don’t think it is respectful to describe these vocalizations as “fussing.”). Later, I realized she was looking for her scarves, which had been left in the back of the wheelchair by mistake. She beeeeed with pleasure when I brought them to her before bed. So, she went through the whole afternoon/evening without her “scarves of the day.” Granted, bubblers are more important these days but Anna needs to know where her comfort things are. No wonder she was on edge.
In the kitchen Anna probably wanted to help prepare the food, as we and other caregivers have encouraged. Her concept of personal space is different and I observed that Anna clearly did not understand Sara’s tense request to move aside. I would not describe this as “body-checking”. Sara seemed nervous and appeared to be struggling to hold back tears. I jumped in; Anna and I made toast together and she calmed quickly on the back deck. Then I calmed Sara down with a long talk.
I was home for the entire shift and noticed several things. Both Sara and Anna are trying hard. Both are anxious about it. Neither one “sees” the other clearly. Anna seems hesitant to see Sara in the role of helper/trusted one. I’m not sure Anna feels safe, understood and confident that her needs will be met with Sara. Sara’s t-logs talk about Anna as if she was an misbehaving child rather than an adult woman with severe autism. I’m not sure Sara feels safe and confident around Anna. Anna is reluctant to go in the community on Sara’s shift and Sara seems equally nervous about it. The “somber” ride described in the t-log is just sad.
Can this relationship be saved? I just don’t know. Both Ted and I have poured a lot of mentoring, encouragement and support into these weekends with Sara. For example, yesterday, I explained all about Anna’s period and storm days…but none of that ended up in the t-log. Granted, Anna is going through a rough patch where her anxiety is high and she is less able to roll with the punches. But others seem to get this and demonstrate compassion for Anna.
I want Sara to succeed. She is a fine person. We desperately need weekend help. This is so stressful for us, we are old and tired with health issues of our own. We long for a full staff.
At the end of the day, though, my job as Anna’s mother and advocate is to protect her from unfair judgments that can wrongly drive how she is supported and mar the fragile trust necessary between Anna and caregiver. I have to listen to my daughter. I think she is telling me that help is needed for this situation., Big Time Help.
We need to talk.
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