When you have a "special" child you can act in many different ways. You may feel disorientated, confused, angry, sad, a failure and much more.
You may feel different yourself and, indeed, you are.
You may react in so many different ways: closing your heart, looking for comfort, fighting or surrendering.
When our first son was diagnosed with Pallister-Killian syndrome, in 1998, we were unable to react for days. We were distraught. We knew we had to help him but we didn't know what to do. We didn't know how or where to begin.We searched for specialist, hospitals, international organizations, and other families who were in the same situation and who were sharing the same "problem".
The Pallister-Killian syndrome was (and it still is) almost unknown. There are a few studies regarding the genetic anomaly and how to diagnose this syndrome at a prenatal stage. However, there is very little information covering issues like "Quality of Life", "What does the future hold" or "Who can help us".
The Internet helped us a great deal and we still find it very useful. We investigate several scientific information sites and we have been in contact with families who have PKS children all over the world.
When you have a child with special needs, you develop many external relationships, whether you like it or not.You and your child will undoubtedly become involved with medical doctors, nurses, various type of therapist, teachers or assistant. Sometimes these people have patience, commitment and love. Unfortunately, most of the time they are unaware of the syndrome.
Sometimes medical doctors and professionals do not realize the impact they have on our children and us, as parents. Their role is vital. They help our children reach new goals and they help keep our children safe and healthy. These specialists are the people we come to rely on when our children are sick or they are experiencing difficulty with a task.
Regrettably, whilst they are a major part of our lives, we are only a portion of theirs; they have their own children and their own problems to look after.
This means that most of the time each family has to rely on themselves and follow their own intuition.
Having contacts with other families with PKS children can be invaluable. Often parents in this situation want to share their pain, hope, experiences, information. Sometimes they just want to hide, escape or forget.
By the way, I think that "special" children can teach us important lessons that enhance our live and improve our growth.
Browsing the Net searching for useful and updated information is not an easy task. Sometimes it is a frustrating waste of time. Welcome to Holland - a short storyThe primary reason of this site is to offer a main interface to the PKS related information on the Web and an entry point to reach useful organizations as well as a meeting point with other families.
Hopefully, this site will be helpful to your situation, will save you time and reduce the frustration for everybody who wants to know more on Pallister-Killian syndrome.
Andrea
Life's Perspective - a short story