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Wednesday, April 20, 2011

Siblings of Special kids

I often wonder what it is like for our other two kids, you know, our typical children. We have a son, Beau who is 15 and a daughter, Gwenn who is eight, who are typically developing children or as also classified in my world, neuro typical. Our "special" daughter, Teale is 12 years old. The birth order of special families has always been of interest to me. I often wonder how our having a family with 1 special child has changed the typical dynamics of  birth order. My youngest may be the youngest chronologically, but she has developed above her sister in many areas. My son had both parents for awhile before the complications of his sisters life were thrown into his life. Beau, like Mark and I had already loved Teale for years before her erratic behaviors started. Gwenn on the other hand, only knew Teale as this explosive big sister who sometimes she needed to fear. What does living with a child, whether it's your daughter or your sister do to your psyche? We were all diagnosed post traumatic stress disorder by Teale's psychiatrist years ago. I would sometimes bring Beau and Gwenn to Teale's psychiatrist appointments so he could see the dynamics of our lives first hand. Teale's sudden rages, mostly directed at intimate family members where hardly ever seen by professionals, so I took this opportunity to get input. We sat in the doctor's office as he watched all of us flinch with Teale near us, wondering if she would strike out at us without warning. We were constantly on our guard, always aware of her state of mind and trying to stay one step ahead of her anger. Being diagnosed post traumatic stress disorder was a sad reality, I was affected negatively by living with Teale. I was also not doing as good a job as I had hoped I was at protecting my other two children. I remember feeling like I had failed Beau and Gwenn after that appointment. I had tried so hard to always look at the good Teale brought us, had I not seen the stress? Another example of her affects I see every year when I pull out the Christmas card pictures from years past. I have this professional picture we had taken of Beau and Teale when she was just turning 2 years old that always brings back memories I wish I could forget. Her rages were not ruling our lives at that time yet, so we were not as vigilant as we are now. Anyway, it is a sweet picture and the last one in that sitting before Teale hit Beau and pulled his hair hard. He was hurt, but the pain wasn't what hurt as much as Beau's feelings. He was always kind to Teale, why would she deliberately hurt him? I believe that photo session was kinda the beginning of many years of pain. Teale became more unpredictable as she aged, her frustration was greater and she angered quickly. By the time we had made the decision to have a third child everyone around us thought we were crazy, our hands were already very full! For years after Gwenn's birth we protected her at all cost, Teale was so unpredictable, there really was no telling whether she might seriously injure Gwenn. It was a very stressful time in our lives, trying to keep our daughter safe from her big sister. This is where my wondering about birth order comes in. Gwenn seems like a classic first born child, not the baby. She is a perfectionist in many ways. She will refuse to try something if she doesn't think she will be good at it. Does having an older sibling with special needs make the birth order change? Does the order in which the child with special needs falls in the family determine ones tolerance to the situation? My son is definitely easier going with Teale, he is not frazzled by her behavior or seemingly frustrated by her unpredictable nature. Gwenn was the target for years, so her relationship with Teale was very difficult. At this point Gwenn and Teale are becoming friends though, they are able to share activities and enjoy each other. Sure there were times I questioned Mark and my decision to have a third child, but it was made with much thought for all of us. We wanted Beau to have a sibling he could have a typical relationship with. We wanted Teale to have support of more than one sibling. We know we won't always be here for Teale and she will need others to look out for her. We didn't want this responsibility to be solely on Beau. I had always wanted four children before having Teale, so having three was a compromise. I knew it was going to be tough, but long term it seemed right for all of us. Unfortunately, our family life is often at the mercy of Teale's moods. We can plan, but it may not work out or the plan may need tweaking. Often the best way to guarantee success is to divide and conquer. My husband or I take Beau  and Gwenn, the other spouse has Teale. We have tried very hard to keep our lives somewhat normal for our typical children, so they do not resent Teale for things we can not do as a family. Vacations are the biggest loss I personally feel. How I would love to jump on a plane and go somewhere warm and sunny during our grey, cold Rochester winters. We flew with Teale when she was young, but it was very difficult.  Flying with her now seems impossible. Even when she was small and somewhat controllable physically it was awful. Driving long distances is also challenging with Teale, abstract thinking mostly escapes her, so explaining that 10 hours will get us to warmth and vacation just goes straight over her head. Teale's siblings, Mark and I have all given up things we thought our family would experience. Mark and I were campers before having Teale, but after a horrid camping experience when she was young, the dream of camping with our family was put on hold. We have recently started to explore the idea of vacations and camping again, but with anything we do as a family there are risks that need to strongly be considered. So I guess I have gotten off track, this is about siblings of special needs children. Are their lives and personalities affected by living with these children? Are they more or less tolerant? Are they more or less compassionate? Do they love or resent their siblings? Do they feel sorry for themselves? Do they deserve more understanding? I am not sure about any of these questions, I know we try to be fair to all our children, but admittedly we are all affected by living with Teale. We have provided outlets for our children to talk about the challenges of our lives. We have made sure they know we understand the frustrations. We have admitted our own frustrations when things don't go how we had hoped or planned. We let them express anger toward Teale, not taking it to heart, but letting their feelings be heard. Mark and I are honest with our kids about Teale's future and what we think we can hope for her to be. We are growing as a family in understanding of life with an extremely challenging daughter and sister. We have learned that no one quite gets our lives, but honesty with others brings about more understanding.

 "I may not be the Mother I thought I would be, but I am the Mother I need to be." ~Ellie Bradley

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