written by Janelle’s mum
Janelle is turning 7 years old this coming November 2016.
Janelle’s diagnosis is still unknown and doctors has decided to classify her into Global Developmental Delay. Her condition is much worst than typical GDD children because she has multiple disabilities and doesn’t respond to us as normal.
She is on soft diet like porridge, puree, cereal and soupy food etc. She is currently attending school at Rainbow Centre (Margaret Drive) and she goes to Society for the Physically Disabled (SPD) for her communications skills.
Everything was perfect and normal when I delivered Janelle (our first child). While typical kids were already siting independently, rolling and crawling by the time of 7 to 8 months, we realised Janelle was unable to do that. She will lie down on her high chair after sitting in it for a very short period of time.
We decided to bring her to the pediatrician to seek for advice. During the examination, we were told that probably she was lazy and we should try to give her lot of tummy time and encourage her to lift up her head more.
However, we went back to the pediatrician when Janelle was 11 months old and told the doctor that we felt something was not right at her age as Janelle still sit with support and head control was weak. He recommended private therapy for us this time.
A few months later, we were also advised to go and see a neurologist do further testing. We did MRI , blood test and lumbar puncture where both were sent to Australia for testing. Result come out to be all normal. During that period , I was pregnant with my second child and it was a relatively good news to know that she was normal.
During my confinement, the hospital called and told me the result from her MRI is out and the neurologist would like to see us. I was very anxious and worried this time. Without waiting for my husband, I rushed to the hospital to see Janelle’s medical report. We were told by the attending neurologist that there were many cases where there was no findings and diagnosis. In Janelle’s case, no abnormality was found and her condition remained unknown.
The only conclusion was that there could be a brain damage and it affect the child’s growing development and muscle. We were told that what we can do were early intervention program and many therapies to help Janelle improve.
Upon hearing all these, I was like “Oh my God, why me and why can’t I have a normal child? Did I do something wrong to be punished this way?”
I went home crying for days and nights. With family support, I told myself no matter what, I have to face it together with my husband as we still have a new born baby to look after.
Every little things that Janelle can achieve is a great milestones for us as a special needs parents. No doubt our journey might be different from others but we learn a lot from her and we have become stronger.
Now she is able to hold her head longer and can sit longer with lesser support. With the help of medical equipment she is enjoying quality of life. She is now learning to use switches and eyes to communicate. We hope God will continue to protect her and bless her with the wisdom to progress further.