Fragile X Awareness Day - Elijah

It was 2005 when I first heard about Fragile X Syndrome...and that was the time when the doctor confirmed that our precious boy has that genetic disorder. Our world turned upside down for that very moment. Nothing can prepare you for this. 

Geraldine and I knew there was something wrong with Elijah's development. His delayed speech and motor skills and still crawling at the age of 2 got us worried but thought he was just doing it at his own pace. Until he got very sick and was taken to hospital. His paediatrician, who looked after him, knew something odd about his progress but didn't give us the full detail. After his recovery, Dr. Coomarasamy advised us to get some test done. Then we received the news that we were not expecting at all.  

Everything made sense and ticked all the boxes. He was globally delayed, from speech and learning, coordination skills to fine and gross motor skills. That's why when he was born, his ears were very prominent, up until now, and didn't have any cartilage. He's also diagnosed with ADHD and with autistic type behaviours. It was all too much to grasp back then. We knew we had little time left and courageously ventured Elijah's therapy together, no matter what. 

From one therapy to another...speech therapy, physical therapy, even a therapy for parents too. We read whatever articles we could get our hands on about his condition, how to help him and get better. It was a hectic and bumpy ride. Little by little, one step at a time, we had slow improvements. We got him to daycare, then to kindergarten school. One big relief when he got admitted to Tallowood school, a marvellous school for children with disability. Also our family's assistance made a big difference in his development.

Elijah had come a long, long way and made great improvements. Perhaps not your average 10 year old kid, who flaps his hands when gets excited and makes strange noises and gets everyone's attention in public, but he's cheerful, lovely nature really stands out the most. For us parents, we take delight with his small achievements. Like when he started to properly walk at age 3 years, said the words "Dad" and "Mum" and his first "Good morning"  although it's 8pm in the evening. He's the happiest boy in town when he gets his $2 stickers from the dollar store. These simple things make it so special. Those are precious moments that makes you forget that your son has a disability and that everything will be just fine. 

It is still a continuous, long winding journey. He will have his tantrums, we then get upset like every parents and loses our temper. If anything, I've learnt one thing from him and that is to be patient, and still learning up until now. You are truly a blessing.