Sam, Rose & Cheng
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What was the initial reaction when you received your children's diagnosis?
Despair. I felt my life and my family’s life were over. We would never be happy again.
What is the biggest challenge you encountered with the syndrome?
Before Rose could nod her head and her body, it was impossible to know what she wanted or if she liked what we offered.
That was the hardest. Imagine you are talking to someone but they just smile without acknowledging what you said. There were many more. Rose had really bad feeding difficulties. It was so hard in the first few months I was very depressed.
You can read about it on our Facebook Page.
You can find other posts I made about the challenges too.
Despite all the challenges, is there anything that you are grateful for?
There are many things I am grateful for. I am grateful I am in Australia where disability is accepted. Many people work tirelessly to integrate people with disabilities into the community, and help them to thrive. There is NDIS that lifts up the financial burden for a family. I am VERY grateful for the AS community who understands me, shared experience and knowledge with me, paved the way before me, sees me and cheers me on. I am grateful for Rose. Without her diagnosis it is unlikely I will get to know the special needs community, to meet many people who don’t live a typical life, they are
not loud in the media but they are actually strong, beautiful and full of life. I personally won’t become as resilient, as brave and strong as I am today.
“Be gentle to yourself. You are doing enough, don’t worry if you didn’t start this or that therapy NOW for your kids,
or if you missed one session, or if you haven’t set up the right visuals.
Supporting and caring for a kid with AS is a life long journey,
we can’t sprint it, we need to adjust to the new reality first and pace ourselves.”
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