A journey of self-discovery - joy and pain

by Kim Jeffery

Click on the image for a larger view

Shaun and Kim Jeffery with Mikhaela (back), Connor, and Jayde

How do you begin to put into words the grief, pain, joy and miraculous achievements - the emotional roller coaster of discovery that occurs in everyday life when you have children with life-long conditions?

We have three beautiful children, our eldest two having been finally diagnosed with Autism in the last year. It has been a very long journey to this point, filled with self-doubt, recrimination and a large amount of alternating frustrating and joyous moments.

We have been a very mobile family due to the nature of my husband's work and we had taken our children to numerous doctors and health professionals in four different states over 8.5 years and 4.4 years respectively. We had always known (from birth) that something was wrong but we were continually told that "he/she will grow out of it," "you need to do a parenting course, "you're too critical and worry too much," etc etc.

Autism is definitely like an ice-berg; in a ten minute window in a doctor's office, less than 10% of the problem is visible (and only then to someone who is experienced enough in the field to see the signs). Our children do not always show their disability unless they happen to be hand flapping, toe walking or screaming in a heap on the ground from sensory overload or fear. They have cherub-like features, beautiful smiles and large eyes with long eyelashes. On a passing glance you would never know anything was wrong and so we were continually fobbed off by "professionals" and judged by the wider community (including other family members) as "hopeless parents" with children who were "spoilt and undisciplined."

For us the diagnosis gave us a sense of closure and vindication of our concerns but it was still devastating. We went through all the "what ifs" and future scenarios in the early days after the news.

As a mother, I felt like I was being pulled under the ocean by a huge wave, pummelled, battered and washed up on the shore. Only this time, there were loving hands that reached out and helped me regain my balance. Kind words and understanding from amazing people who helped soothe away the salt from years of wounds. Their friendship and knowledge, the sea breeze which helped dry the "ocean of grief" and allowed me to regain my sense of perspective and laughter!

Click on the image for a larger view

Jayde (front), Mikhaela, and Connor

In humanity, there is no perfection, nor will there be but the changing and shaping of the journey brings both heartache and supreme joy! Each step and reaction along the way defines who we are at each and every given moment of time. Likewise, a diagnosis is just one step. It does not define who we are, nor is it the essence of our entirety! Our children, like ourselves, are so much more than a definition and will grow and change many times. I do not think about "what ifs" any more. The human potential is unlimited and in a constant state of flux. Every destiny is uncharted and forever changing!

The challenges of parenting our children have been many and will be ongoing, however, it has also brought us great joy! The first time our son ate an apple (when previously all he would eat was weetbix for breakfast, lunch and dinner) we jumped up and down, hugged one another, cried and in general acted as if we'd just won the lotto! That's how it felt and you get the same feeling over and over again. The smile that lit up our eldest daughter's face the day she brushed her hair without help and without screaming and hiding under the furniture was priceless!

There are so many other moments which we have shared with friends who know exactly how big and amazing these moments are. We have cheered with them also in their families' "amazing moments". We have laughed and cried together and I will be forever grateful for the gift of their friendship.

I would like to express my deepest gratitude to Carol, Janine, Kim, Michelle, (and Sue from Cooinda) and all the people who have helped us and touched our lives in so many ways. I would also like to thank the team of professionals who took the time to listen, to look and helped to solve a long-standing puzzle.

Click on the images for a larger view

Connor at Cooinda playgroup, Nov 2002

Jayde at Cooinda playgroup, Nov 2002

For the Complete Story...
Contact: Cooinda Family Support Group