Wednesday, February 5, 2014

Was this the Beginning of the End?

When the behaviors started with Teale, it is hard to say. I believe it was during my pregnancy with Gwenn that we started seeing the big rages. I seem to recall that's when I started to not feel safe alone with Teale out in public. I was pregnant and of course everyone around us wanted to blame her behavior changes on my pregnancy. I have found the blame factor to be what people go to when they can not understand a child's behavior. We were accused of spoiling Teale, of not disciplining her enough, of not learning enough sign language, of not keeping a strict enough schedule and many other "bad parenting" accusations. My insecurities as a parent of a special needs child were raw. I believed parts of anything anyone said, thinking it was somehow Mark and my fault this child was so difficult and raged so often. When in public I was on my guard, scared of the next stranger who would point fingers and treat my severely brain damaged child as "just a discipline problem," as a brat and mostly as my fault. My fear of her raging and my not being able to control her had me paralyzed. I was especially worried because my pregnancy was considered high risk after the previous births of both Beau and Teale being difficult. Fear of her kicking me in the stomach if I needed to physically get a hold of her was high. Mark started taking Teale out by himself more and more. It was the changing of the tide in our parenting and it was the beginning of the "dividing and conquering family."I would have to guess on this, but I bet most special needs families understand this term or eventually will. Many of us use this method as a way of survival. One parent has the special needs child while the other has the typical child or children. Sometimes Mark would take our older son out with Teale also, but rarely in the last few months of my pregnancy did I go out alone with Teale. We felt our family unit falling apart, often this was especially upsetting to me. I missed being a family in the community, I missed my husband, who seemed to spend much of his "spare time" with Teale. I felt horrible for Beau because his relationship with his father was changing with Teale being all consuming. Mark was the only one who could physically control Teale while I was pregnant and for a long time after my cesarian for Gwenn that remained true. Add in the fact that after Gwenn's birth, I had to be her caregiver, as I exclusively breastfeed. The easiest way to deal with our family was for Mark to have Teale and me to have Gwenn and Beau. I remember sadness overcame me much at that time in our life. I felt so alone, taking care of our new precious baby was isolating enough. Feeling isolated is often the case with a new baby in the family, but then there was the fact that Mark was constantly on the run with Teale. I didn't see much of him and when I did, we just jumped through hoops trying to keep Teale happy and everyone safe. If he tried to stay home with her, she was so difficult, he would just end up leaving again. It was easier without her in the house, the YMCA to play or swim, a mall to wander, grocery shopping, Chuck E. Cheese, basically anything to occupy her, except being home where she seemed the most agitated. Besides when Teale was home, she was unpredictable and we worried about Gwenn and Beau's safety. If we weren't out with Teale, we were being bossed around by her at home. She was running the show and unless you have lived with a child like this, you will not understand how very little choice we had in the matter. A mentally unstable child is beyond exhausting, as parents, our only goal was to try to keep her happy and occupied. Our life was no longer ours, it was truly run by our middle child and no one understood how much we were suffering. Family mostly chose to keep their head in the sand, friends didn't know how to help us. It was a miracle Mark and I were able to keep our marriage in tact during those days. We were worn, unable to accomplish the basic needs around the house and we also were getting very little sleep, as Teale was up and down all night long. I felt hopeless, defeated and scared. Her rages were already so intense I could not imagine her bigger and stronger. I could not see the light, and even God was slipping from my life. I was so angry and confused by the pain we were all going through, what could I have possibly done to deserve this? Was this the beginning of the end, was this what Mark and my life would always look like? Would we ever find peace for Teale and in turn for our family? Or would dividing and conquering always be our way of life? I missed the dream of what I thought my family would be, I missed my husband and I think I resented Teale, who took him from me.