by Pip Marks
The issue of transition is very close to my heart – it has been since the day my oldest child was born. My first questions to the docs after his birth were “Will he be able to live away from home one day? Will he be able to take care of himself? Will he be able to make decisions for himself? “I had endless questions about transition from living at home to independent living. And I am sure all parents who have children with special health care needs have asked similar questions. I believe transition starts at a very young age. It is a long term process that changes and adapts to a child’s level of awareness, and the focus will and should change as they mature. As parents, we need to foster opportunity beginning at a very young age to develop self confidence, self-esteem, the feeling of being valued by others, determination and a positive outlook. And of course, let’s not forget about sense of humor! We must empower our children to WANT to take charge of their own lives, including their own health care. To paraphrase a comment I once read: “Pip, you may not want to hear this, but remember that this condition is not yours. It’s your son’s and until you give it back to him, he will never thrive. Give it back to him and he will thrive in many more ways than just having spina bifida and hydrocephalus.” And man –were they ever right!
There are four key elements of successful transition:
- Family support
- Professional support
- Self advocacy
For this blog I would like to focus on the first: Self-Determination – which is a person’s ability to control his or her own destiny. It encourages the development of attitudes, skills and knowledge that will empower a person to control their own destiny as much as possible. It is an integral part of the transition process. Children and teenagers with hydrocephalus have the right to – just as others do- be asked directly and repeatedly for their opinions and preferences, and to have the decisions that are made incorporate their views. They have the right to make mistakes, after all we learn so much from our mistakes. They have the right to be encouraged from a very young age to participate in decisions regarding their own destiny. We must not lower the level of expectations we might have for them, based on our own perceptions. There have been many times during my son’s “growing up” years at home, where I have had to remind myself to Trust and Let Go, to Let Go and Trust.
It is critical we remember that with a successful transition for children towards adulthood we must teach them, and sometimes often have to remind them, that this journey to independence is not meant to be a solo flight; asking for help whenever they need it is a sign of strength and maturity. Please read our Health Care Transition Guide for Teens and Young Adults with Hydrocephalus for very specific tools and guidelines to understand and implement a successful transition to adult centered medical care, and read our Transition Presentation from our 2010 Conference by Dr. Harold Rekate.