Wednesday, November 20, 2013

The Docs, part six

I hated the psych ward. I hated everything about leaving my daughter there. The people were nice, the nurses understanding and caring but once again I was being forced to let go of control. Letting go is not easy for most Mom's. I may be wrong here, but letting go of your child who uses very little audible language seems much more difficult on the heart. I was leaving my child, who talks in cryptic puzzles that I am forced to figure out, in many stranger's care. Teale often exploded out of frustration because she was misunderstood. How would people who did not know her obscure sign language, mixed with gestures and speech that was missing so many sounds, expect to help my daughter become more mentally stable? Her inability to be understood was the factor that caused the most meltdowns. My hope had always been that as she got older and could be better understood, the meltdowns would decrease. I never blamed her for her frustration, I hurt for her. That she knew what she meant and I did not was more frustrating to me than it was to her, I just kept my feelings in check. I often felt a deep sadness that Teale may believe I just don't care when I'm not understanding her, but in truth her wellbeing haunted me all hours of every day. I knew the abstract was missing in her comprehension. I knew she just could not understand the meaning of "tomorrow" or the concept of us being "out of something." I prayed the day would come that I wouldn't shake with fear when she asked me for something I did not have immediately at my disposal. I wondered how the nurses and the doctors at the psych ward were dealing with this. Teale often would suddenly ask for a random stuffed animal or toy that she had not thought of in years, she would expect Mark and I to know what she wanted and find it ASAP. Thoughts like this tormented me while Teale was at the psychiatric ward, would they just drug her if she went ballistic? It all ate at me, yet I felt it was my only hope too. She was lost and the Lithium may bring her back to us, it may help her to be a better person. I was (and still am) always thinking things could be better. If we find the right medications, if we find the right therapies or the right doctors, maybe, just maybe, we will someday find the miracle we've been looking for. The Lithium was started, the days progressed. We fell into a routine of visiting Teale after our long day running our in home daycare. I believe the staff at the psychiatric ward was more than understanding with our family because Teale was not their typical child. They usually didn't allow much visitation from family, but Teale's unique special needs were also not what they were used to dealing with. We worked as a team, trying to help our daughter, but also giving Mark, myself, Beau and Gwenn a break from the extreme difficult behaviors that Teale had been displaying in the months prior to her hospitalization in the psych ward. We knew she would be coming home soon, that she would still take much energy and time and we were realistic that this was probably not going to be the miracle we hoped for. We knew we needed to build up our strength and get some sleep under our belts. Teale's sleep did not improve drastically at the hospital, it showed signs of improvement, but it was tedious how little she improved. Soon we were talking about discharge, even though she was barely sleeping more than a few hours a night. The thoughts were she might sleep better at home in a place she felt more safe and secure. The Lithium was building up in her blood and we were getting closer to a therapeutic level. The insurance would start to argue against Teale being hospitalized and it would be difficult to prove the need. The visits to the hospital were exhausting, emotional and draining. We would see other kids who didn't seem to have much parental support and that was difficult to watch. Kids would attach to Mark and I when we were there, talking our ears off, as if they had not had an adult listen to them in years. We were watched while we visited, it was subtle, but you felt the cameras and the stares of the staff. Were they looking to see if it was our fault? I understood, yet considering it was this very hospital that caused my daughters lifelong disabilities at birth, it made me angry to have them judge me. I know once people get to know Mark and I they realize our devotion and our love toward Teale, but to have to prove that to strangers is unsettling. Having Dr Dave and Dr Tom backing us with years of care always helps me. There have been many times we have been put in uncomfortable positions with Teale being explosive in public. Knowing Dr Dave and Dr Tom have our back helps me hold my head high. They would never let a one time incident turn into a CPS situation where our care of Teale is being questioned. That kind of relationship is priceless in our life, the trust and the care between the four of us for the better good of Teale has literally kept me sane. Teale does self injurious behavior, like biting her own arm, the bruises attract stares, it's uncomfortable for Mark and I, but it's a sad, real part of our life. So as we visited our own daughter at the hospital, I remember how at first the idea of strangers observing our parenting skills really bothered me. I remember feeling like it was unfair that these 22 year old nurses who hadn't lived half of what I had, got to pass judgement on me. It was part of the journey though and in the end, I hope we taught more than they did. (to be continued)