Fast Forward to 2013

When I last posted on this blog, it was October 2010. Ton had just turned four. Today, Ton is 6 years and 8 months old. We have passed the unspoken deadline of six years but the journey has continued.

The last two years have had its ups and downs. But whose life has not had ups and downs these last two years? Even my neurotypical (NT) kids have taken me on roller coaster highs and lows themselves!

With Ton, we've had rapid gains that are sometimes erased in a matter of days. We've had plateaus when we start thinking, "he's getting better. We're on our way to typical;" then he suddenly crashes to his 4 year old state. I've shed tears with family, teachers, therapists but we've had equal (maybe even more) amounts of laughter, pride and joy.

What has our journey has taught me, thus far? Celebrate successes, quickly bounce back from defeats but keep hoping and praying because it's not over 'til it's over (= 'til I'm gone). We've learned to accept Ton as he is (even his "monster" moments) and by doing so we slowly see improvements and bask in the small gains he continually makes.

Most importantly, we've realized this- Ton is our special child. He is not like most kids but we would never trade him (his innocence, his purity, the simplicity of his being) for a typical child. Having him in our family, in our lives, has been challenging but our whole family has been blessed by his presence. We are living richer, wiser, and more grateful lives because our special child has taken us on this adventure.

Here's to many more years of learning, crying, celebrating, praying and thanking. Thank you, God, for Ton.

Acceptance (written in Nov. 2010 but never published)

I used to think that I was better than many because I immediately accepted the diagnosis and went straight to work. I marveled at how far Anton had come; at how much "better" he had become. Then he turned four.

Each year that we come closer to the unspoken "deadline" of six years old, comes a realization that we have to keep working harder, and that we have not done enough. We assess what we have done, what worked and where we failed. So after 14 months of great successes, we realized that we were stuck.

Today, Anton got a permanent marker and wrote on the back of my Target-bought fabric chairs. On any other day it would just be a little thing (of course, I would worry about having it re-upolstered) but today it was not. Because it was one little thing on top of other little things that have been happening lately.

For almost a week, Anton had been coming home from school with one stamp on his hand. According to his teacher he had resumed his old habit of standing on the table. He has also refused to do paper work. Most importantly, like at home, Anton has began to hit others.

Initially, when it first happened, he was in the middle of a meltdown so I assumed that he was merely having difficulty expressing himself. I did not think much of it until he did it again. This time it was because he was angry (it seemed, at me). He then did it to his yaya too but we did not expect it to happen in school or therapy.

It seemed like it all started last Halloween. On the night of October 31 when I was trying to put him to sleep. He refused to and insisted on "light." Since I refused to turn it on, a full-blown, never-before-seen tantrum ensued. He was flailing on the bed, kicking and hitting me. He cried for 30 minutes and only gave up when sleepiness overcame him. That's when I said to my husband, "para syang possessed, in the dark para syang nakakatakot (it was like he was possessed; in the dark, he was scary)."

And that feeling hasn't changed since. I have recently been full of fear and doubt. No longer full of faith and hope, I am now desperate. It did seem like an evil spirit took over my son and made him a monster. And just now, I realized- this is what the other parents felt about their kids. This sense that, one day my child was okay then slowly he faded away.

Anton's autism was so mild before that I thought beating the odds was easy. Then slowly a darker cloud came over him and, now I know, this will be a life-long battle. Even if Anton has had ups and downs before, we were never this "down." Most of all, I know that even if we battle this "evil possession" soon, I know that it will come back to haunt us again. And again and again.

So, very much like I felt in August 2009, I am mourning again. This time with a deeper sorrow and fear then before. Because this time, I have accepted that, though we may overcome it, it may come back anytime. Just like it did on Halloween.

The challenges we hurdled on his first year after diagnosis was the first phase. I know now that there will be many more to come. Thus has come my acceptance. Acceptance that clouds will always come and go. He may stop hitting me next year, but maybe then (hopefully not) something else will crop up.

With this acceptance comes my reality. I am not Maya. My real name is Aya. My son is Ton, not Anton. I will no longer hide under pseudonyms worried about what people will think of me and my family. Like their own families, we have our problems. Some have rebellious teenage children, others are finding difficulty toilet-training. Ours is autism.

With my 2nd mourning I once again thank God for the health and safety of my children. I pray for more strength and hope. And much more than before, I pray for Ton. No longer do I pray for recovery since I now understand that this is life-long. I pray that Ton will get better and overcome challenges that come his way.

Unlike the first time I mourned, today my husband is WITH me (though he is miles away in San Francisco). Over Skype he typed, "he'll bounce back. I have not given up on his being able to do great things. If it gets to the point where he can't go any further, then we will worry about it when we cross that bridge. But for now, it's too early pa ...."

Right now, it may be tough to see the light at the end of the tunnel but I keep walking. I don't know if I'm going in the right direction but I keep walking and bumping walls. Hopefully I reach the end one day soon, even with lots of bruises :).