WELCOME!
This site represents the collected readings, opinions and philosophies of the author. These are open to change with time.
It is NOT an authoritative site on Down Syndrome. The site is NOT a complete reference source as it is simply those things I have time to investigate and collect. In this sense it is almost random. It is NOT designed to be an educative website.
The "SUPER" in the name of this site refers to many things:
- Superb just as they are - every last child and adult with Down Syndrome, simply because they are human beings deserving of dignity.
- Super - above and beyond what we have come to expect of people with Down Syndrome, as a society. We are too limited by history and medical complacency, but that WILL change in the coming years.
- Super-charged - there are SO MANY things we can do NOW to improve the lives and the opportunities for those with Down Syndrome, and so much they can do to change their own lives. We are on the cusp of enormous change.
NB. It is NOT meant to imply that there is anything particularly "Super" about our son. Naturally, like all parents, we think our boy is gorgeous, wonderful and talented.
About the author
Paul Doney is a chiropractor by profession.
His motto is: "Embrace the Life you didn't plan."
He is also the husband of
Sabine and father to
Xervier (pronounced: Zer-vee-air)
Xervier was born on 20 April, 2007 and happens to have Down Syndrome (DS).
New Parents
I feel for new parents. Whether you have received a diagnosis in utero or post natally it can take years before you begin to feel "normal" and can look at things dispassionately and with a more global vision. The timing will depend on your personality, family situation, cultural setting and particularly the complexity of medical challenges that your child faces. The more complex the challenges the longer it can take to feel on top of things.
The problem with this is that the most crucial time to make significant interventions to help improve your child's life is in the first few years, especially the first year. However these changes require changes in thinking and lifestyle as well as getting on top of mountains of information at a time when parents of typical children feel overwhelmed. You need a guide and you need it QUICK. Please look for others who have been through this years ago and have the experience and knowledge to guide you until you can make your own way.
Please take a moment to look at the
New Parents page.
Philosophy
As a family we have a number of guiding principles that determine our approach to Xervier's health and upbringing.
- Early Intervention. The first 6 years of a child's life are crucial to their development. Amongst those 6 years each preceeding year is more important. Thus the earlier, more intensively and joyfully a child recieves age-appropriate intervention the greater the benefit will be to that child's development. It is not as if great things can not be done in the later years of childhood or adulthood, it is just that they are SO much harder. By "early intervention" we mean ALL inputs to the child's life:
- Emotional
- Social
- Dietary and supplements
- Physical
- Language
- Reading
- Maths
- We acknowledge that Down Syndrome is a genetic disorder but at this stage medicine cannot treat such a genetic disorder directly. Thus, for practical reasons we look at DS as a Metabolic Disorder. That is, the additional genes produce changes in metabolic processes that begin to have effects from gestation in utero and that continue throughout life. As such, our approach is like that toward other metabolic disorders (most of which are genetic in origin), ie. to combat the abberant metabolic processes and their outcomes through diet, supplementation and medication.
