And again I didn’t write for an entire week. The past week was rather eventful and stressful. I have been distracting mmyself by going on Tumblr and attempting to start something up there. I’ve had one Tumblr account or another ever since 2008 but never quite understood how it works and still I really don’t. However, I’m enjoying the community of mental health users there.
The reason the week was stressful was because of a lot of emotion-evoking events. First, my grandma died Saturday night. This caused a lot of emotions in me, because my grandma was the only family member I had a good relationship with. Her funeral was yesterday and it was good to see a lot of aunts, uncles and cousins I rarely see at all. The funeral service was good. My sister spoke on behalf of the grandchildren. I couldn’t help but laugh at some of the stories she told.
Another emotional event was the orientation meeting with the coordinator from the Center for Consultation and Expertise (CCE) on my situation re day activities. In attendance were the CCE coordinator, my day activities and home support staff, my mother-in-law (who acts as my informal representative), the local authority social consultant, my psychiatric nurse practitioner and me. The coordinator does the first meeting. If she decides it’s necessary, she’ll involve one or more consultants who will help find solutions to the situation at hand.
As it turns out, my day activities staff were hardly open to any suggestions from the CCE coordinator that would allow me to stay at this center. They kept making excuses about my meltdonws (which I haven’t had in a while) causing seizures and aggressive outbursts in other clients. This never really happened. Besides, these other clients get seizures/outbursts from a lot of behavior that other fellow clients exhibit too. I myself witnessed this on Monday.
We discussed the reasons for my meltdowns. Sensory ovelroad, demands and stress often set me off. The CCE coordinator asked whether I’d ever had a sensory integration assessment. I haven’t. It was at one point suggested by another consultant but my then psychologist (the one who kicked me out of the institution last year) dismissed this. Same for the trauma therapy recommended by the CCE consultant when we had a consultation in 2010.
We also discussed my living situation. This had not been the direct reason for contacting the CCE, but now that we had them involved anyway, my home support coordinator suggested we discuss this too. It is really hard. I mean, I experience a lot of stress now that I live independently with my husband. I was open about the worsening of my depression, including suicidal thoughts. I don’t want to die though, so the CCE coordinator asked what I do want. I honestly don’t know. At one point, the CCE coordinator also asked me directly whether I’d have wanted to live independently had the psychologist not kicked me out of the institution. I said “No”. My home support coordinator talked about the possibility of me and my husband moving closer to supported housing. This may be very difficult bureaucratically, as psychiatric diagnoses (including autism) don’t qualify you for long-term care, but maybe the CCE can help us figure this out.
I have mixed feelings about the meeting. I am somewhat hopeful but also a little pessimistic. Since the day activities staff aren’t open to solutions that will allow me to stay there, we’re at the mercy of a possible other day activities center. I hope we can find one.