I've been gone a while. And though my last post was one of elation and celebration, the mild regression that came after was heartbreaking. So I decided to stop gloating and basking in Ton's gains. My superstitious self made me believe that because I was not humble with Ton's successes, the punishment was huge disappointments in Ton's behavior. So I stopped writing.
But the disappointments kept coming. Since my last post, Ton has began hitting. First out of "gigil" and only to people he loves (his parents, yaya and therapists). Then it progressed to hitting out of uncontainable excitement (still only with adults). We tried to stop the behavior at that point and had some triumphs. But the hitting episodes continued to escalate to hitting and kicking due to music sensitivity then hitting due to anger.
These have been the lowest days in our journey. He has began hitting his classmates and siblings. Sometimes out of annoyance, other times out of excitement or a need to communicate. We have regressed to our lowest in terms of behavior. And I have stumbled on a major roadblock. This hurdle has been the toughest to overcome and I have never been this scared about Ton's autism in a very long time.
Yesterday, I spent the whole day until 2am designing, printing, laminating and cutting visual tools to help him regulate his behavior.
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| I made this to encourage self-regulation in exchange for a reward. |
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| I made this to teach him to unleash his anger on inanimate objects instead of people. |
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| I made this portable pillow to provide a suitable punching target for his sensory needs. |
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| I made this to help him identify the difference between hitting due to anger and that due to excitement; and then to act appropriately. |
We've used verbal commands, rewards and punishments, stern reprimands, and gentle reminders. We've even tried to ignore the negative behavior. I'm running out of options. I now fear for his expulsion from school and angry mothers shouting at me when I pick him up from school. More than anything, I fear that we are on a downward spiral.
When I imagine how people perceive him when he hits and kicks us in public, I realize, "now, there is no denying that he is a special child." I would like to say I don't care but I do. Because I know that he is more than the hitting and kicking. i know that he is smart and sweet. I just wish he would overcome this so that the old Ton would come back.
I suddenly feel old and tired. Everyday I ask his teacher with so much hope, "how was he?" And still everyday I go home after picking him up more depressed and closer to desperation. I am now looking into alternative therapies. I've began to closely monitor compliance to his GFCF diet. We recently asked his biomedical doctor to reassess his supplements. And, like when Ton was first diagnosed 4 1/2 years ago, I am back at fever pitch working, reading, stressing and fearing.
There's so much fear that, despite my lack of sleep, I am now here at the therapy center eager to find a solution to this dilemma. There must be so much fear in my face that, this morning after discussing Ton's behavior in school, his teacher (Leah) said, "halika nga. Wag ka naman ganyan. (Come here. Don't be like that.) Don't give up." Then she cried maybe (because she was so physically drained from his morning meltdown but also) because she could feel my pain and see my desperation.
Sitting now in the therapy center, I look up from my laptop and watch special kids go in and out. I see them fidgeting, moaning unintelligible words, flapping their arms. Then a young girl (maybe 7) is carried in by two women. She is thin and cannot walk. She lays down next to me, cradled by one of her yayas because she's probably paralyzed. Her eyes roll around scanning the ceiling. She mumbles softly with occasional shrieks that make people stare. Her saliva drips from her mouth and bubbles form.
I look at her, hiding my pity. Instead, I force a smile. I look away as tears begin to form in my eyes. How does her mother feel? I can only imagine. I'm sure she's more tired than I am. I'm sure she's more fearful for the future of her child. I'm certain that she often feels desperate. But she obviously hasn't given up. She hangs on to hopes of a better future for her daughter. Then suddenly, as I look again at the face of this (undeniably) special child, my forced smile becomes genuine and sincere. There is a beautiful soul inside that limp body, and it would be a pity if her parents stopped trying to bring her out.
My rare visits to this therapy center always leave me like this. I begin to feel hope, not only for Ton but for all these children. I am touched to see all the love that comes when parents/grandparents/yayas accompany these children here week after week. I am suddenly inspired by everyone else's journey and how they keep going, no matter how dire their children's states are. Most of all I am humbled. Who am I to whine? My child walks and talks. Yes, he hits others, but apart from that he is okay.
As I walk out, hand in hand with Ton, I smile around at the other families. I am going home happier, less desperate, humbled and grateful. Thank you.
