:: PRISMS

Ali

by Tony Daranyi, father to Ali, age 14

When my wife and I were asked to be parent presenters at the 2002 SMS International Conference in Denver, we scratched our heads and shuddered. Although the title for the conference was "Conquering the Peaks and Valleys Together," we had trouble with the word "conquering." We felt that we never truly conquer the trials and tribulations that this mysterious syndrome has presented us. Conquering implies control, something we don’t feel we’ve gained. By admitting this, we didn’t want to frighten any parents who have newly diagnosed children or adult children with the syndrome by presenting too dire a picture. So we struggled to come up with a better, more appropriate word that described our particular journey. After discussing the subject amongst ourselves and with our friends and family, we settled on the word "surrender" as a good substitute that aptly describes our journey. Ironically, surrender is the antithesis of conquer. Through surrender, we give of ourselves to the syndrome and to our daughter, Ali; we gain acceptance. We then made a list of all the feelings, emotions, activities we surrender to, including: new and strict schedules, a seriously curtailed social life, loneliness, renewed compassion, much confusion, helplessness, learning about unconditional love, living in the moment, staying calm, and the SMS diagnosis itself. In the process of this preparation for the conference, we then listed our Survival Kit. These were the items, not in any particular order, that have worked for us as we surrender to the syndrome and to what we hope is a healthy upbringing of our child. We don’t want to preach, nor pontificate; hopefully sharing these items becomes useful for others. Some survival techniques have been added and/or modified since our presentation at the conference. I think we can all agree that raising a child with SMS is by far the most challenging life’s activity we have ever been involved with.

We have had to completely discard any and all expectations — whether for the next moment, the next hour, the next day, the next week or the next month. Our day-to-day schedule is more determined by the quirky and unexpected needs of our daughter. At the same time, she sometimes blows us away by what she is capable of doing and performing, as opposed to what we expect of her.
Ali has demonstrated extreme self-abusive behaviors since she was about two years old. (As an aside, and as a word of encouragement to other parents with a self-abusive child, as she’s aged, Ali’s episodes have dramatically decreased in frequency but not necessarily in intensity.) Along our journey we were turned on to the Skinner Behavior Model and we have found this to be the most effective way of coping. We completely, 100 percent disengage and ignore the harmful self-abusive behavior once it has escalated and redirecting (the initial strategy) has failed. One hundred percent disengagement means just that: no eye contact, no changes in body language or facial expressions, no verbal communication, etc. At the same time, we also have a strategy in place — a reward, if you will — to get Ali to do what we want of her. We continually reward the positive behaviors.
We are the primary advocates for our child, whether dealing with the medical establishment, our families, social services or the educational system. We have inherited the role of a case worker.
We have accepted that we cannot parent Ali alone. It takes a strong support network, including help from friends, the State, a live-in helper, Big Brother/Big Sister programs, a full-time aide at school, family, counseling.
We strive to remain positive by looking at the glass as half-full, not half-empty. Overall, Ali has been a tremendous blessing in our lives, a gift. She has been our teacher, teaching us about aspects of life we never imagined. There is a reason — tangible or not — for why we have been gifted with these children. It is up to us to discover just how this gift has manifested itself.
We have accepted the situation that confronts us. This does not mean we don’t repeatedly go through the grief cycle; we do. But we don’t dwell in any one place, we don’t dwell in denial, nor in paralysis, nor in grief, nor in devastation. Take charge of the situation and be productive. No matter how dire matters may seem at any one time, there is/will be light at the end of the tunnel. Always have a contingency plan in place (a "backdoor," if you will) in the event the worst-case scenario (which for us meant a full-blown, self-abusive episode — we call them "fits") is experienced.
Along the same lines, always create a safe place, or have one available (e.g. at home, while traveling, at school, shopping, etc.). We have "Ali-proofed" her room (turned locks inside out, taken out all lights, boarded up windows, put in wainscot along the walls, anchored bookshelves and dressers to the wall). When she was little, we created a 4’X4’X4’ padded box to place Ali in as a safe place for her fits. We also use the automobile as a sacrificial safe haven when traveling. For safety’s sake, we have to be able to separate ourselves, and others, from Ali when she is tantruming.
We strive to take care of ourselves. If we’re not healthy, we cannot expect to have a healthy household. We schedule a night out one day a week, we try to take one day off a week, usually on the weekends, we exercise or pursue an avocation to try to achieve balance in our lives and diffuse the stresses that raising a child with this syndrome presents.
As ironic as it sounds, keep a sense of humor and laugh with your child. These children have a unique, if not amazing, sense of humor. They want nothing more than for us to laugh, out loud, with them.
Be compassionate — dig deeper than you ever thought possible, to walk in your child’s shoes, to be your child, to be one with your child. At those moments when compassion is required of you, let go of everything else in your life and really connect with your child.
Initiate a program of tough love. Instead of paying attention and thereby escalating negative behaviors — by hugging, consoling, holding, etc. — tough love in this case means ignoring.
Stick to a routine and a schedule. Our daughter functions best when we adhere to a strict schedule on a day-to-day basis.
Since Ali is not wholly proficient at expressing her needs, we have had to anticipate her needs of hunger and sleep for her, as a means of heading off at the pass her self-abusive behaviors.
Finally, we try to celebrate our child, although we definitely don’t do this often enough. The successful small steps in her life — learning how to dress herself, bathe, etc. — are actually large stepping stones to what we hope will be a life of self-actualization and completeness. For this, we must be celebratory.
Most importantly, we have tried to tap into the incredible love that Ali pours out. We call her our Love Bug. She personifies unconditional love in the purest sense. That is her blessing. That can become our blessing, too, if we’re ready to surrender to it.

Good luck!

Tony and Barclay Daranyi have a 14-year old daughter, Ali, who was diagnosed at birth with Smith-Magenis Syndrome. They also have a 12-year old daughter, Tasha, who is abnormally normal. Ali, now a ninth-grader, had been attending a nearby public school, but has recently begun attending a residential program in Pennsylvania. The family lives in the San Juan Mountains of Southwestern Colorado, near Norwood.





Family Support Contact Another SMS Parent Meet Some Special People Join the SMS Listserv Poems and Articles	Ali by Tony Daranyi, father to Ali, age 14 When my wife and I were asked to be parent presenters at the 2002 SMS International Conference in Denver, we scratched our heads and shuddered. Although the title for the conference was "Conquering the Peaks and Valleys Together," we had trouble with the word "conquering." We felt that we never truly conquer the trials and tribulations that this mysterious syndrome has presented us. Conquering implies control, something we don’t feel we’ve gained. By admitting this, we didn’t want to frighten any parents who have newly diagnosed children or adult children with the syndrome by presenting too dire a picture. So we struggled to come up with a better, more appropriate word that described our particular journey. After discussing the subject amongst ourselves and with our friends and family, we settled on the word "surrender" as a good substitute that aptly describes our journey. Ironically, surrender is the antithesis of conquer. Through surrender, we give of ourselves to the syndrome and to our daughter, Ali; we gain acceptance. We then made a list of all the feelings, emotions, activities we surrender to, including: new and strict schedules, a seriously curtailed social life, loneliness, renewed compassion, much confusion, helplessness, learning about unconditional love, living in the moment, staying calm, and the SMS diagnosis itself. In the process of this preparation for the conference, we then listed our Survival Kit. These were the items, not in any particular order, that have worked for us as we surrender to the syndrome and to what we hope is a healthy upbringing of our child. We don’t want to preach, nor pontificate; hopefully sharing these items becomes useful for others. Some survival techniques have been added and/or modified since our presentation at the conference. I think we can all agree that raising a child with SMS is by far the most challenging life’s activity we have ever been involved with. We have had to completely discard any and all expectations — whether for the next moment, the next hour, the next day, the next week or the next month. Our day-to-day schedule is more determined by the quirky and unexpected needs of our daughter. At the same time, she sometimes blows us away by what she is capable of doing and performing, as opposed to what we expect of her. Ali has demonstrated extreme self-abusive behaviors since she was about two years old. (As an aside, and as a word of encouragement to other parents with a self-abusive child, as she’s aged, Ali’s episodes have dramatically decreased in frequency but not necessarily in intensity.) Along our journey we were turned on to the Skinner Behavior Model and we have found this to be the most effective way of coping. We completely, 100 percent disengage and ignore the harmful self-abusive behavior once it has escalated and redirecting (the initial strategy) has failed. One hundred percent disengagement means just that: no eye contact, no changes in body language or facial expressions, no verbal communication, etc. At the same time, we also have a strategy in place — a reward, if you will — to get Ali to do what we want of her. We continually reward the positive behaviors. We are the primary advocates for our child, whether dealing with the medical establishment, our families, social services or the educational system. We have inherited the role of a case worker. We have accepted that we cannot parent Ali alone. It takes a strong support network, including help from friends, the State, a live-in helper, Big Brother/Big Sister programs, a full-time aide at school, family, counseling. We strive to remain positive by looking at the glass as half-full, not half-empty. Overall, Ali has been a tremendous blessing in our lives, a gift. She has been our teacher, teaching us about aspects of life we never imagined. There is a reason — tangible or not — for why we have been gifted with these children. It is up to us to discover just how this gift has manifested itself. We have accepted the situation that confronts us. This does not mean we don’t repeatedly go through the grief cycle; we do. But we don’t dwell in any one place, we don’t dwell in denial, nor in paralysis, nor in grief, nor in devastation. Take charge of the situation and be productive. No matter how dire matters may seem at any one time, there is/will be light at the end of the tunnel. Always have a contingency plan in place (a "backdoor," if you will) in the event the worst-case scenario (which for us meant a full-blown, self-abusive episode — we call them "fits") is experienced. Along the same lines, always create a safe place, or have one available (e.g. at home, while traveling, at school, shopping, etc.). We have "Ali-proofed" her room (turned locks inside out, taken out all lights, boarded up windows, put in wainscot along the walls, anchored bookshelves and dressers to the wall). When she was little, we created a 4’X4’X4’ padded box to place Ali in as a safe place for her fits. We also use the automobile as a sacrificial safe haven when traveling. For safety’s sake, we have to be able to separate ourselves, and others, from Ali when she is tantruming. We strive to take care of ourselves. If we’re not healthy, we cannot expect to have a healthy household. We schedule a night out one day a week, we try to take one day off a week, usually on the weekends, we exercise or pursue an avocation to try to achieve balance in our lives and diffuse the stresses that raising a child with this syndrome presents. As ironic as it sounds, keep a sense of humor and laugh with your child. These children have a unique, if not amazing, sense of humor. They want nothing more than for us to laugh, out loud, with them. Be compassionate — dig deeper than you ever thought possible, to walk in your child’s shoes, to be your child, to be one with your child. At those moments when compassion is required of you, let go of everything else in your life and really connect with your child. Initiate a program of tough love. Instead of paying attention and thereby escalating negative behaviors — by hugging, consoling, holding, etc. — tough love in this case means ignoring. Stick to a routine and a schedule. Our daughter functions best when we adhere to a strict schedule on a day-to-day basis. Since Ali is not wholly proficient at expressing her needs, we have had to anticipate her needs of hunger and sleep for her, as a means of heading off at the pass her self-abusive behaviors. Finally, we try to celebrate our child, although we definitely don’t do this often enough. The successful small steps in her life — learning how to dress herself, bathe, etc. — are actually large stepping stones to what we hope will be a life of self-actualization and completeness. For this, we must be celebratory. Most importantly, we have tried to tap into the incredible love that Ali pours out. We call her our Love Bug. She personifies unconditional love in the purest sense. That is her blessing. That can become our blessing, too, if we’re ready to surrender to it. Good luck! Tony and Barclay Daranyi have a 14-year old daughter, Ali, who was diagnosed at birth with Smith-Magenis Syndrome. They also have a 12-year old daughter, Tasha, who is abnormally normal. Ali, now a ninth-grader, had been attending a nearby public school, but has recently begun attending a residential program in Pennsylvania. The family lives in the San Juan Mountains of Southwestern Colorado, near Norwood.
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