Wayne Hower
Many people attempt to address issues concerning developmentally disabled children and their families from a purely academic viewpoint. Others have very personal experiences with little or no professional or academic background. Both can be beneficial and provide helpful information, but they both also have potential pitfalls and limitations.
The purpose here is to use personal experience along with professional and academic information to help professionals, parents, and siblings in their adjustment to their new journey. The goal is to assist families in ways of achieving balance between taking care of the needs of parents to continue to develop themselves, their relationships, their non-disabled children, and the disabled family member.
The ideas presented here are not intended to address specific disabilities. They are to provide perspective and some general helpful ideas that can be implemented regardless of the disability of the child.
The author has both personal experience and professional experience in working with developmentally delayed children along with two master's degrees one of which is in psychology. He, along with his wife, has raised his step daughter since she was six. She is now a twenty-five year old adult with developmental delays. He has transitioned her through several school districts in several states and seemingly countless Individual Education Plans (IEP's) and into adult work placement. His professional experience comes by running a home for physically and developmentally disabled youth contracted by the state. These personal experiences along with an academic background including two master's degrees gives him a two-pronged unique perspective including a personal as well as an academic/professional perspective.
Sibling Conclusion: Nondisabled siblings can turn out resentful and selfish, helpful and altruistic, or somewhere in between. Much of the development will depend upon the interactions between parents, parents and the disabled child, parents and the non-disabled children, and the siblings themselves. It is vitally important for each family member to develop to their fullest potential. What is best for each family member includes opportunities that involve the disabled child as well as opportunities that do not. Parents, perhaps more so mothers as the primary caregivers, are charged with a delicate balancing act. They need to take care of their own individual needs, the needs of each other, the needs of each nondisabled child, and the needs of the disabled child. The interaction and demands placed on each family member will influence family harmony and growth along with individual growth and development. Siblings will need to take on certain responsibilities, but this should be part of their development and should not take the place of other experiences. By implementing the ideas expressed above, family life and development should be enhanced. Part IV real life example: Parental involvement is critical to the well-being and development of mothers, fathers, couples, and all their children. For the best results, both parents need to be involved in all areas of family life. Even if we could not both make meetings, such as IEP's, my wife and I always talked about and came to an agreement regarding what we expected to take place and the results we desired. You can be sure the school representatives or other professionals had discussed what they wanted to have happen at these meetings beforehand. Parents should be no less prepared and regardless of how the private discussions progressed, a united and prepared front should be presented at these meetings. The more involvement all involved adults, usually both parents, are in the lives of their children, disabled or not, the better it will be for the children's development and, believe it or not, it will also be better for the adult relationship as well. In addition to involvement in their children's lives outside support is also vital for parents and couples. There is a wide range of professionals available for support. These professions can provide resources and ideas. Family, friends, religious congregations, and other social involvements can provide added support needed for parents. An example of the importance of these social supports can be seen in our church involvement. We were actually asked to leave a church when we took a boy with cerebral palsy (CP); the interesting thing about this is that pastor has a degree in special education. You may not always get support from those you may expect but you will always find support if you look for it. I guess we did not fit the image this church wanted to present. This caused great distress between my wife and me. We have since found a much more accommodating congregation and the support is overwhelming. This has made a huge impact on our mental well-being and on our ability to stay focused on the important things concerning our family. Support is vital. If you don't get it from one place, keep looking. It will be there for you.
