Journey on the Spectrum: Acceptance

Last night over dinner, I asked my youngest daughter, "Tessa, what baon (packed lunch) do you want for school?" She gave it a quick thought and said excitedly, "PIZZA!" "Okay, pizza," I said then I continued to eat. Suddenly from another side of the table (that was usually silent) I heard, "I want burger steak, and corn, carrots and peas." Monotonously said and lacking all the excitement that Tessa had, but it didn't matter at all to me. They were words from my once-silent Ton.

Ton has slowly been joining our conversations these last few months. Dad, yaya (nanny) and I would occasionally look at each other and smile whenever we catch him make an "advanced" language attempt. Any other parent would not gloat if their eight-year old said robotically as they pass the airport and see an airplane taking off, "LOOK AT THE AIRPLANE. THE AIRPLANE IS FLYING IN THE SKY," but I do. My heart leaps. I am grateful.

Look, ma, no more headphones! Ton stopped wearing his
headphones a few months ago and has learned to cope with
the chaos of birthday parties. (Here with Tessa on her 7th
birthday party)

Many parents would be annoyed at a child who is kulit (repetitive) but when Ton says repeatedly in a span of five minutes, "I want banana ice cream," while staring intently into yaya's eyes waiting for a response, I celebrate. Ton is engaging another person in conversation. He is looking for non-verbal cues from yaya. More importantly, he knows that he deserves a reply so he doesn't stop until he gets one. So after eliciting no response from yaya, he attempted to modify his sentence and said, "Kumon first, then banana ice cream." Only then did yaya say, "yes, Kumon first then banana ice cream." (Special note- we only serve him non-dairy banana "ice cream" from frozen bananas using a Yonanas machine.)

Thanks to our Yonanas machine, Ton gets to eat dairy-free
banana "ice cream" every day!

In the five and a half years after his diagnosis, we worked hard- family, teachers, therapists but Ton especially. We've tried a lot of interventions, therapists and schools. But the biggest changes happened when I altered my perspective.

For years we always knew that Ton had exceptional intelligence. We always believed that his deficiency was merely verbal. So we only chose regular schools for him. We wanted him exposed to neurotypical children. He did well as a preschooler but as he grew older it became more and more difficult for the teacher to manage him in class. He became uncooperative, physically aggressive and detached.

Last school year, after he turned seven, we realized that he was no longer coping with the demands of a regular classroom. The bigger realization, though, was the acceptance that Ton was a special child who needed to go to a special school to be taught by Special Education teachers.

The search for the right school was very tough, though. There are many special schools out there. I wasn't going to trust my Ton with just any school that would accept him, even if only a handful of schools even considered taking him in. It even came to a point that I was ready to homeschool him if no acceptable school would take him in.

Then we visited Ton's current school and for the first time in a very long time I was hopeful. The school director was warm, well-educated and had extensive experience in handling children with autism. If I enrolled Ton in this school, I thought, he would finally belong to a small class of six children and have an IEP (Individualized Education Program). Of course all this came with a hefty price tag but a long-time parent of a special child could see why- the faculty was caring, educated, experienced and intensely passionate about their students. (Even the school yayas were consistently "in" on addressing Ton's negative behavior!)

Ton has the moves! He was also the best-dressed
elf during the Christmas program. (Of course, I'm
biased! I sewed the costume!)

When the school director and head teachers finally laid out a plan for Ton, I was relieved. For years, my husband and I felt that we were battling autism alone with mostly Google and books to rely on for reference. School year after school year we had to be involved in how teachers interacted with our child. We had to receive immediate daily feedback and, in return, we had to give the teachers tips on how to communicate with him. We often had to "teach" the teachers how to manage and work with a child with autism.

I've read a lot of books these last five years. All my love and
all that knowledge just wasn't enough to help Ton.

Then suddenly, we didn't. Suddenly, we were not the only experts on Ton. Most importantly, we could let go a bit and trust- that these teachers, this school, knew what it was doing.

I still thank Ton's past teachers- the most loving educators I've met. Their passion to help Ton could never be questioned but Ton's issues had evolved so greatly that special intervention was critically needed. A while back, I used to think that love was enough to make him better. That if I read enough and worked hard enough he would improve. Finally accepting that we needed help from special education professionals was the key to Ton's recent successes.

One of his biggest successes is self-regulation. In Tahoe, Yaya
wouldn't let Ton ride the sled until he calmed down from a
minor meltdown.

After a semester in his new special school, Ton made great developmental strides. Still, I don't want to gloat. There are many more hurdles to overcome; a lot of obstacles to conquer. Unlike before, though, we have a plan. Ton has a program in place. In tandem with already exceptional therapists, we have exceptional teachers as partners now. So I worry less and finally see the light at the end of this autism tunnel.

Last week we visited Dra. Alexis Reyes, Ton's developmental pediatrician. She said, "his non-verbal skills are now at par with typical eight-year olds. Amazing!" I became teary-eyed. News like that had been so rare in the past years. "He still needs a lot of work with language, though, because that is a stumbling block to further to development," Dra. Reyes added. I didn't mind! I was very happy. I said (with goosebumps) to the doctor, "I think when I finally accepted that Ton needed to go to the right special school, that's when things got better. We started moving forward."

Another milestone? Enduring the unbelievably long lines at
Disneyland on New Year's Day!

Just this morning, Dad walked into the room and saw Ton writing and illustrating another one of his "books" (sometimes it's about nursery rhymes, or numbers, or the alphabet). He looked into Allan's eyes and said, "eat breakfast at Pancake House." Dad said, "no Pancake House today. On Sunday, when it's Ton's day (when he gets to be with Mama and Dada alone), we will eat in Pancake House." Dad started to go on and do something else when suddenly Ton blurted out, "eat fish! In M Cafe!" (Dad laughed, because of the very swanky alternative Ton chose... I became teary-eyed behind my smile :) )