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.....And Now She Dances Once More A family story My daughter has always loved to dance. From the time she was four until the time she turned ten she danced everywhere she went. She took ballet and jazz lessons every week. Everywhere she went she walked on her tip toes and could not wait until the time she could dance in toe shoes. She also had mental health issues for many years, but we were able to help her stay stable and functioning. At ten years old her mental health took a sharp turn for the worse and she developed very disturbed thinking and bizarre behaviors. The behaviors kept her from having friends, making her school days very difficult. When she came home from school she was exhausted from the amount of effort it took to hold herself together all day, and she would have daily meltdowns. Every aspect of the day became difficult for her and for the rest of our family. It was at age ten that she also stopped dancing. She could dance no more. After three years of this intense struggle with mental illness she was admitted to a residential treatment facility. She has been there now for fifteen months, and has been working very hard every day at learning the skills she needs to move forward in her life. She comes home on the weekends, although this has been a gradual process. We too have worked hard at gaining skills, maintaining our relationship with her, and helping her in every possible way. This has been a huge commitment for all of us, but we are a family and we are determined to remain one throughout all of this. Two months ago my daughter walked into her therapy session with a new goal in mind. She had a list of all the local dance studios and their phone numbers. She also had a list of questions she wanted to ask. With the help of her therapist she made all her calls and signed up for dance lessons….. …..And Now She Dances Once More. “Treat a person as he is and he will remain as he is. Treat him as he could be and he will become what he should be.” Jimmy Johnson, former NFL coach and co-host of “Fox NFL Sunday” My Son in Crisis- A Parent’s Story For me, parenting a child who goes into crisis has been a pendulum swing between fear and joy, fatigue and isolation. To some extent, these fluctuations are unavoidable in the home of a challenging child. They are softened when caregivers are supportive and understanding … but they are aggravated by the gaps in our system of care. My son’s challenges have been expressed in physical aggression since he could walk. I live in fear of my child hurting other people, and hurting me, and fear that I am not enough for him. And I take tremendous joy at accomplishments that may have gone unnoticed with another child; when my son does not hit the toddler who grabbed a toy from him, when he survives a grocery run without breaking anything. And I am ecstatic when my son excels beyond his same-age peers like riding a bike early, understanding the complex ideas in “Jonathan Livingston Seagull” or deciphering the instructions for a toy built for children twice his age. Similarly, it helps when people get to see him when he is doing well and when they let me know that they see the great kid he is underneath his challenges. When my son is struggling, the mental effort of finding and delivering the perfect responses in a perfectly calm manner is exhausting. To be completely focused while he is kicking my shins, braking furniture or insulting me so deeply that if it were anyone else saying these things, I would never speak to them again – is unimaginably strenuous. But if I allow one tense word, issue one ultimatum or just start to cry, he will escalate even further. So I hold it together until he is calm, and my unwavering devotion to him carries me through the onslaught. It can be even more stressful to have someone watching me navigate through a crisis. But when that person makes a point of praising my parenting skills once things have cooled off, it gives me a boost of confidence that renews my energy for the next challenge. In the background of my son’s crisis, he has been kicked out of many childcare centers, my friends don’t bring their kids around and my problems are so foreign to them they cannot support me enough. My extended family cannot see my son outside of their nurture paradigm where nature can be overcome with time-outs and no desserts. Even people who understand the problems may have solutions that are very far from my values, leaving me isolated in different way. Sometimes the recommendations are made so strongly that they leave me fearful that I may loose authority over what assistance my child receives. So I retreat, stay quiet and cease asking for help. This isolation is eased when I get an understanding case manager, or connect to peers at VPIC, Parent to Parent or the Vermont Federation of Families. It is as if I must guide a small boat that holds my little family of two through a terrifying storm of unknown origin and if I steer it just right we can get to the calm eye where the sun is warm and we can relax on the smooth water - all the while knowing that the storm is out there and we will encounter it again and again. I am ever hopeful that someday we will leave it behind. So I bring my son to therapy, I ensure that the people who take care of him are capable of steering that little dingy in my absence and I ask questions of anyone who may help me understand him better. All the while I am scanning the horizon for rough waters ahead, hoping that we have left the storm behind us, but bracing for its return all the same. When my son was 5 he entered a period of intense crisis. His school could not keep him safe and I was getting worn out at home. He needed an e-bed stay. Since it was Christmas vacation, he was able to access an e-bed for one week but he could not stay there while school was in session because there is no therapeutic day placement for Kindergarteners. The one week e-bed was not long enough for therapeutic benefit but it was long enough to disrupt our relationship. Since the main source of conflict for my son was school, a day placement would have been extremely helpful in steering him out of the crisis. As I watched the e-bed staff manage his outbursts I wished I had access to the training they had to handle him so well. Inside of our little boat, sometimes I am exhausted and cannot row fast enough to get ahead of the turbulent waves. This is when I need someone else to take over for a while. This is where actual crisis respite, respite when my son is raging and out of control would be fantastic. For my family, an e-bed introduces the additional stress of separation anxiety for my son and provides no actual relief for me. I visit him whenever I can and am thinking of him every other second of the day. I am not catching up on my sleep, I am up late crying. I am not enjoying peace and quiet, I am turning the radio up, washing the dishes and scrubbing corners that are already too clean. It is miserable to leave my vulnerable child in the care of strangers, no matter how kind their reassurances, no matter how tough things were at home. It is as if a large battle ship has come along and pulled my son on board where he can be safe from his storm but I am left spinning in the wake waiting for him to return, not knowing how rough the seas will be when he does. When he is having a tough week, my son has nightmares about loosing me in a crowd. This is not a difficult dream to decode: when he is having a tough week I get just as scared that we will hit waters so rough that I will need to seek out that battle ship that can carry him through the storm. There are some wonderful people doing a great job supporting families like mine. There are also gaps in the system of care. I wish there was a therapeutic day program for Kindergarteners to fill the gap after supportive preschools like EEE. I wish I could get parent training similar to what employees of e-bed facilities have and I would love to have access to crisis respite as I described it above. These services would empower me in parenting my child through the tough times so that when the fog of crisis lifts I get to enjoy him at home, as the dark clouds pull back to reveal my beautiful son.
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