Embracing Your Childs Disability You Have The Diagnosis, Now What-cibi

Parenting We have listened to dozens of parents tell us in detail their heartbreaking stories of how they first became aware of their child’s diagnosis. Whether it was Down syndrome, Autism, or brain damage caused by oxygen deprivation during birth the sadness was there, though the reactions were varied. We can’t remember exactly what happened or how we felt when we heard of Nicholas’ diagnosis of autism. It wasn’t because the shock was so great that we blanked it out. It wasn’t because we didn’t know what autism was. It was more a reaction of "are you sure and what do we do now?" Our son’s symptoms started gradually. His development was slower than our older daughter’s development and he was emotionally and physically connected to us. Initially it seemed that he was developmentally "delayed" due to a language delay. By the time he had the diagnosis at age 2 of PDD (Pervasive Developmental Disorder), it didn’t mean much because there was little we could do. He was still our kid, the doctors didn’t know if he would ever catch up and they didn’t know how far he would go. All of a sudden life takes a turn and the journey begins with an onslaught of testing and an onslaught of professionals giving opinions, recommendations or nothing at all. It was still a day by day, pay as you play, making little baby steps in the world. So, we got a boy with a broken brain, now what? The loss of the idealized child is like a grieving process. It takes a long time, it never ends, it is constantly changing and it is a journey. It is hard to accept the fact that we can’t do all of the things a "normal" family experience would bring. A trip to Disneyland would mean that we would have to leave him home. Until recently, doing errands with him has been out of the question. Even on the hottest of days, our doors have to be closed and locked in the event he may wander out the door. Days without the support of his current programs, typically holidays with school breaks, can be awful. Denied our usual daily schedule, there still is no downtime. We have to be up and out going somewhere, with really no place to go, otherwise he becomes agitated and restless being around home too much. Sharon finds it easier to work during those times rather than to stay home. The most difficult factor for us is the sadness we feel for not giving our daughter a normal sibling (even though she adores him). A parent has to work hard to heal the shock of an early childhood diagnosis and a parent has to have the strength to deal with later unexpected challenges. Sometimes Kevin feels like Astronaut Jim Lovell on Apollo 13. "We have to stay calm and play the cards we’re dealt during a crisis just to stay alive and to get home safely." We love and accept Nicholas for who he is and what he will become. In our eyes he is perfect. But that realization doesn’t occur without having been through a life altering experience because of who he is. The other piece of life is the wonderful things that Nicholas brings to us. He has taught us to love people unconditionally just as they are. He has helped Sharon find her passion and calling in life as a special education teacher. We have learned to speak out on behalf of all children and their needs. We have learned never ending patience. We have learned to appreciate everyday and to look for the miracles in each day. After watching our son for 17 years, Kevin’s primary conclusion is that people, not just special needs children, are more than just their physical or mental attributes. There is a deeper, spiritual way to connect with others that transcends the obvious physical and mental differences we see in a developmentally disabled person. We recognize the disability now and love it because we know there is a whole person behind the sometimes puzzling behaviors. The vocalizing and confusing habits all have meaning. Now that my boy is 17, we have been fortunate and blessed to have known his school friends for the past 14 years. We now see these guys as young men and we relate to them for who they are. These amazing young men seem to step up to the chance to realize their aspirations and they expect to be treated as "typical boys". Reaching out for help and support is crucial. Especially in these times where autism seems to be an epidemic, parents and families really have to be there for each other. Services for special needs children are available, but not as much as we would like for families in all areas. Here is where a great opportunity for personal growth often occurs. Giving is not just better than receiving. At a deeper level, giving IS receiving. Getting out there to find out how to help your child almost requires one to pay it forward to the next parent in line. As soon as a special needs parent catches his or her breath and feels a hint of acceptance of his child’s condition, volunteering to assist other special needs families is an exceptionally healing activity and builds stronger communities. Having a child with special needs transforms raising a child into an unanticipated and unpredictable journey. From hearing the diagnosis to embracing the disability, a life altering experience occurs. Finding the proper resources, honoring your emotions and creating a strong support network can help your life become a meaningful and compassionate experience. We hope to share that experience with you. Kevin and Sharon O’Neil are the founders of The O’Neil Advocacy Group, a professional consultancy dedicated to guiding special needs families through the labyrinth of issues they face each day. They can be contacted at [email protected] or 510-863-3119 for more information. About the Author: Kevin O’Neil M. S. is a professional mediator and advocate consultant for families with special needs children. He has been helping individuals and families resolve disputes with each other and outside parties since 1984. Sharon O’Neil M.S. teaches Special Education with an emphasis in moderate to severe disabilities across many age groups. She also has an Education Specialist Credential. In addition to her advocacy work, Sharon is a certified Behavioral Intervention Case Manager (BICM). Article Published On: 相关的主题文章: