JJZZJ Days Of Our Lives

I guess most of you read the post on “Autism Speaks” and even viewed the video. You might have also read what I shared about Tito, the autistic who writes and publishes books (He is still writing. )

 http://jjzzj.wordpress.com/2009/05/21/autism-speaks/

http://jjzzj.wordpress.com/2009/04/22/breaking-the-silence/

http://jjzzj.wordpress.com/2009/04/21/the-voice-of-silence/

Now … if you may give me this honour, let me say a few things about me living with autism from 2004 to present day.

I am a preschool educator. I am not stupid. I could see that Zane was different since he was one plus. My in laws and us were all rejoicing far too early when we heard him uttered his first word “papa” in the car when he was 8 months old. I wondered why Zane didn’t say more words after that, you know, even the very basic words like “mum mum”, “ball”, “go”, bye”. He had never wave anyone goodbye. He never do flying kisses like all toddlers do. He never do the usual things boys his age did.

One thing we remember vividly is that Zane was a very difficult baby and toddler. Bringing him to places was very challenging. I didn’t dare venture alone with two children then. Once I attended a dear friend’s daughter’s first birthday. Zane was very overwhelmed and had sensory overload (which I was not aware). I wanted to cry there and then but I held back my tears of frustration till late that night after all had slept. I told myself then,”No more parties for Zane. No more other people’s houses for Zane when I am alone. No more…. …. “

I placed him in a playgroup to test my suspicion. 2 days was all that I needed to know that my boy is different …  …. from his peers.

I started going through the Polyclinic-referral to NUH CDU route to have Zane assessed. He was 2 years old while I waited for an assessment date. It was a B&%$#*y longgggggggg wait. 3 plus and eventually he was granted an audience with the Authority in this field in NUH. Just a few glances at him and a few questions and she deduced that he is autistic and he would be put through their diagnostic test to confirm it.

Why did I subject myself to the long wait? Simple. Private rates are beyond us. For the same diagnostic test which cost us $300+ at NUH will cost us $1200-1500 for private consultation and all. Seeing NUH specialists are at a heavily subsidised rate of $21 versus $150+/- depending on how long the private specialists see you. Get the picture? It is also for the brainless reason that NUH’s diagnosis will be well recognized and accepted all over the island’s special needs institutions and schools (service providers).

I walked out of NUH CDU that fateful day stoned. “Another round?” was all that were flashing through my mind back and forth.

I went through what the experts in this field called :-

Stage One : When first diagnosed, it is a case of “disbelief”.

All of a sudden, just like how bubbles burst within seconds, my dream and hope that my son would talk and learn with me vanished. My vision that we can be going to the same preschool together with Zoe also disappeared.

“I think he is between moderately to severely autistic.”

“Autism has no cure.”

“You may want to consider putting him in a special school.”

These statements from the Authority pierced and they broke the person in me. All of a sudden I felt inadequate and lost, despite my years of training in childhood education. Friends who know me know that I am a very self-assured and confident woman. But all that was gone the moment I stepped out of those cold doors. I knew that I would become a different person from that day forth. And so I did.

I went into the next stage.

Stage Two : The “hope” emerged as Paediatrician said OT, ST, ABA, etc will help when started at a young age. At this stage, there is also signs of non-acceptance.

“How can my son be in an autism centre for the 2-6 yos?” , “Why can’t he attend the same preschool as his sister?”

I sourced for a childcare which offers intergrated program right from the start. No need to try the mainstream Kindergartens, Zane sure would be shown the exit door within the first 3 hours.

The childcare Zane attended has the intergrated program but alas, not all the teachers there are trained to handle special needs children. If the teachers matched to Zane were willing to take the time and effort to understand him and work around him? That was already half the battle won. If the same teachers observed how the therapists I engaged to the centre managed him and helped him through the classroom routines by modelling or modifying? That was really HUGE HUGE blessings dropped from heaven into our laps. Zane had both!!

He always had very loving teachers (towards him) in his 2+ years stay at the centre. Thank you, dear teachers, if you are reading this entry right now. You won’t know how much your help, dedication and willingness to embrace Zane in your midst helped me to survive the darkest days in parenting. When Zane was with you, I had the peace of mind that he would be well-taken care of. Even on bad days, I know you ladies would go the extra miles with him. I know my boy made you cry and made you smile at the same time. I know my boy has left very deep footprints in your teaching career. I know he will be one student you will never forget because of the fights he had with you on the floor. Thank you…. with tears ….

We engaged private therapist to come to Zane’s school to do the sessions with him. His school converted a space into a therapy room with a one way mirror. That way any teachers who want to observe the sessions without distracting Zane can view the sessions through the glass. I am very grateful to the centre’s supervisor with pushed for this idea and had it executed.

Subsequently more and more of the ASD children in the centre benefit from this concept. Eventually, this school ventures into this in-house therapy sessions on their own. Zane was enrolled as its pioneer batch of students. The program was proven effective as the therapist is skilful and confident. Zane teachers who were willing to learn from her eventually managed to handle Zane in their strides. This is what we call generalisation and inclusion. My son was very blessed. He always meet great dedicated teachers.

Concurrently with his childcare’s in-house IEP program, Zane also attended Autism Children’s Centre’s twice weekly Early Intervention program. At times he would have two sessions a day. Poor boy, by the time it was 3 plus, he was super drained.

Again, Zane’s 2+ years with ACC was also beneficial for him. He was matched to the right therapist at the right stage of his development and needs. ACC has only 2 male therapists in their whole organization and Zane was very blessed to have them both ! I am very indebted to these teachers. I felt bad that Zane struggled so hard with them, throwing them over at times and not to mention physically hurt them by his abrupt actions and tantrums. I’m sorry, teachers, that you had to put up with my son in this aspect week after week for 2+ years.

I was especially touched when the Program Head mentioned to me that after Zane’s graduation ceremony on the last day of March, she had to time herself out in her office (on the pretext that she had to return some calls and told her staff that she would join them shortly for lunch.) to have a hearty cry. How she had seen that 4 yo boy grown to the 6+yo boy she just sent out of her centre filled her kind soul with much tears, joy and comfort. She watched Zane grew literally. Thank you, N . My family is another you have touched through your passion and love for our special children. Wish you all the best in all that your hands set to do. Be it for yourself or for others. God bless you always.

This is getting too heavy for me. I need to stop here and rest my heart. I will continue …. no promises though.