Sean's Journey

5th July 2013

5th July 2013 marks a milestone of a different kind. After 3 years of ferrying Sean everywhere (St Luke's Hospital, Sengkang CC, KKH, SGH) for all sorts of therapies (OT, ST, PT) he was finally diagnosed  as an ASD (Autistic Spectrum Disorder) kid.

I remember when he was born, he was an extremely cute baby! Big eyes, rosy cheeks, infectious laughter and all. My colleagues and strangers would randomly and often comment on his adorable-ness. 
However, for as long as I can remember, he was always drooling. So much so that I had given up trying to teach him to keep his mouth closed and instead, bought him thicker and bigger bibs! He used to have rashes over his chest and neck areas if his saliva soaked shirt stayed on his skin too long. So we had to constantly change his bibs and tops. Even till now, he would still drool especially if he was concentrating very hard on something.And his eye contact was very bad. We couldn't get him to look at us whenever we called him. He had to be constantly prompted and encouraged to look at us. And whenever he did, it would be a kind of unfocused look.

His speech was another issue altogether. While he could articulate words and his wants to us, he was always repeating what we said every time we asked him a question. It would be like, 'Sean do you want to drink water?' and he would reply 'you want to drink water?' back. While it was amusing at the beginning, I was beginning to get exasperated and worried. 
I had long dreamt of having a conversation with him when he was a baby, anxious for the day when he grew him up and when I could have a chat with me. I thought that it would be so nice to ask him how his day was at school, or what his favorite colors and foods were. But by age 3, he still wasn't able to have such conversations with me. His cousins of the same age could speak so well by then! I was envious.

I did voice out my worries, but well-meaning relatives played it down by telling me that 'year end babies and boys are usually slower' (he's a November baby). While I didn't agree with them, I let the situation slide. For either my lack of knowledge and/or escape  from reality, I chose to believe them and 'ignore' my son's condition. And for that, I am regretful till now, wondering if I had made my stand and got him diagnosed earlier, would we have been able to bridge the gap much more then we have?

Things finally got to a turn when I brought Sean to a pd for a common ailment when he was about 3 years old and I asked to do an assessment for him. While she said that it wasn't common practice to do the assessment out of the age group, she obliged. After the short assessment, she confirmed that there was something worth to take a closer note of. She arranged a doctors appointment for us, but the earliest date that we could get was about six months away. That moment seemed like a revelation of sorts. We now knew something was wrong but not know what.

That six months wait was sort of Iike a limbo, at least for me. During that six months, I lived in feigned ignorance. I lived my life as if nothing had changed.

Of course that all changed after the doctors appointment at the hospital. She had arranged rounds and rounds of therapies for him.

Occupational therapies, physio-therapies, speech therapies and early intervention schools to mention the least. I exhausted all my leave that year ferrying him everywhere for the various therapies. Like a headless chicken, I was lost and didn't know where to turn to, where to go, or who to ask for advice. Of course we could have gone private, but the prices were too high for us to afford. So instead, I blindly followed what was on the schedules. The years that followed passed by too fast. I switched schools for him, from a kindergarten to a full day child care, and on top of that, he was enrolled into EIPIC. We had to juggle his various therapies, school bus routes and many other details  too fine and many to type. 

Previously during weekends, hubby and I would take the opportunity to sleep in and relax the day away. We couldn't afford that kind of lackadaisical life ever since, brainstorming of various places and activities to bring Sean so that we could further expose him.

School wise, he was definitely not progressing as well as his peers. He was constantly having difficulties with phonics, choosing to memorize the words instead of using the phonetical sounds. The teachers have, in their own well-minded thinking, asked if I would consider putting him up for extra phonics enrichment classes to help him improve. Like any kiasu parents, I probably would have, if not for that one incident.

I remember one heart breaking moment when one day, Sean with all his big, woeful eyes, told me that he didn't want to study so many schools. It was that point that I decided that no matter how slow he progressed, I wasn't going to put him for any enrichment classes. I thought that for a 4 year old boy, attending two schools and countless therapies was already too much!

Fast forward to the present - at 5 years 8 months, we finally have a proper diagnosis for him and a doctor's recommendation that he is able to attend mainstream primary schools. 

To be fair, Sean has certainly improved by leaps and bounds since the beginning. His drooling is much more controlled now, and although his eye contact still needs constant prompting and encouragements, he has improved tremendously! Also, he is speaking so much better now. I am able to have some sort of a conversation with him although due to his attention level, it usually is rather short. But I can now know his favorite colors and foods. At least I can sneak a peek into this little mind of his and understand him a little more. And although we now know that he can attend mainstream schools, we aren't exactly rejoicing over that because knowing that his weakness is in language (he has difficulties processing speech and language), he might have difficulty catching up when the syllabus gets tougher.

While we don't expect him to excel academically, I hope that he will at least enjoy his schooling days. I have been trying to psych him up for Primary one in anticipation for next year and so far, he seems to look forward to it. 

Has our journey ended with this diagnosis? On the contrary, it has just begun.