In those 4 years of working, you know what I learned works? Family involvement. So obvious and yet so many families don't see it; or if they see it, they refuse to do it. Maybe because they are still in denial, or maybe because it hurts immensely to be around their children and see them struggle. So they leave all the work to therapists, doctors and yayas. Their kids improve but not as much as they could if the whole household got involved.
For us, family involvement began on Day 1. I was in shock and in tears when I found out that Ton had autism. I cried for months after that but vowed that I would fight it as long as I was alive. For my husband, Allan, it was a tougher struggle. He was the typical in-denial father. He refused to believe that Ton's behavior was anything but the actions of a male toddler. He wanted to sue the dev. ped. He wanted a second opinion. But on day 1, we were already on the same page on one thing- we would follow the dev. ped.'s recommendations on therapies and work together to help Ton get better.
For four years since the diagnosis, our life as a family has revolved around Ton. My husband continues to work in the US in two-month intervals (not just for Ton, but a US income helps ensure that we can afford all the therapies, doctors and nutritional supplements that Ton needs). Priority for car use is Ton, specially when there are "last-minute replacement" sessions with Teacher Lady (OT). Household helpers are required to attend seminars for ASD caregivers. Vacations and airplane trips have to be carefully planned to accommodate Ton's sensory issues. Restaurant choices have to take into account Ton's GFCF diet. We also never leave the house without- his headphones, digestive enzymes, alkaline water, gluten-free snacks and "medium pig". Most importantly, there is always a conscious effort to draw him into our world, to keep him engaged, and to make him enjoy interacting with us.
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| He never goes anywhere without "medium pig." |
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| We always make sure that we eat in restaurants that have GFCF dishes (like arroz caldo). |
Our family's involvement in Ton's development includes:
Protecting. We all watch out for Ton. Not just his parents and yayas but even his siblings. Because he is not familiar with social norms and is oblivious to the physical harm he may cause himself and others, we often keep a close eye on him as much as possible. We anticipate his next move, his next adventure, often with success.
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| We (including Ate Ting, his yaya), always have to keep a close eye on him because he is not familiar with social norms. |
Understanding and sacrificing. It was tough at first, making Ate Gabby understand why we had to give in to Ton often, or why his choices were almost always followed. But she eventually saw how difficult it was, not just for Ton but the whole family, when a major meltdown occurred. Mama and Dada were usually irritable and dead-tired (Mama was often left depressed) when the tantrum subsided and it was not fun anyway for her. So she has learned to adjust to his needs and sensitivities while her parents have learned to prioritize one-on-one time with the other children.
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| Ate Gabby has been more nurturing with Ton since she was told that he has autism. |
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| Ton has first dibs on videos to watch- and the girls have accepted that. |
Pushing limits. Even as we try to understand and make concessions just to prevent "monster moments," we've also learned through the years to keep raising the bar for Ton. When he wants to leave a place, we try to negotiate and add a few more minutes (and do a minute-by-minute countdown) just to teach him to self-regulate a little longer. Another way we push limits is by moderating his interactions with his baby sister, Tessa.
Born one year later, Tessa is already developmentally ahead of her Kuya Ton. Sometimes she is too much "in-his-face" - wanting to play with him, talking too much to him; her voice, alone, sometimes annoys Ton. And although we don't want these interactions to lead to meltdowns, I've learned that having Tessa around Ton helps draw him in. Often, he is hyper-focused and agitated at something he's doing, making him oblivious to the world around him. When Tessa tries to engage him, he gets annoyed but it also brings him back to us.
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| Tessa may annoy him but she always draws him back into our world. |
Being firm. We have to mean what we say, even if it makes us sad to see him disappointed. This goes specially for his GFCF diet. Because his body cannot tolerate wheat-based and dairy-based food (which are usually the favorites of most children), he often gets left out when his siblings are given these treats.
He tries to ask, "I want cake please," or "I want lollipop," and it is often tempting to give in (admittedly, I give in more than his yaya). But when I remember what these foods have done to him in the past (and how gut-wrenching it is for me anyway), I stop myself. Everyone else, even his sisters, are more careful about eating these things in front of him and try to be considerate.
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| The girls get lollipops, he gets none. He's used to it by now :( |
Providing materials and outlets for creativity. We never run out of play doh, art materials, whiteboards and markers in the house. Because his language is limited, I noticed that Ton usually expresses himself and his interests through art activities. He draws or creates play doh art. He loves his whiteboard and marker because drawing decongests his brain of his current obsession.
Exposing him to new experiences (and trying our best to make these into happy memories). When I first brought out the easel and paints and brushes, Ton was not very familiar with painting. He tried it once, with his siblings, and other painting afternoons were very much welcomed. It was the same with baking, the bounce house and the ball pool. All activities, in fact, facilitate sensory regulation. The arts because they help organize brain activity, and the jumping from the ball pool and bounce house helps with the need to release his energy (and other sensory terms I am not familiar with :) ).
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| Everyone has fun when in the ball pool. |
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| The bounce house helps with sensory regulation. |
It was only lately that he stayed up late enough to experience Christmas and New Year's eves and I think he would want to be awake for the next years'. For Christmas, it's obvious- who wouldn't want to stay up for those presents? For New Year's eve we do a coin shower ("sabog-pera," as we call it). He doesn't quite understand why Mama throws coins and why everyone goes crazy over the big coins and the paper money. In fact he tries to pick up the sad little 25c and P1 coins, even those hidden under the couch.
Singing and dancing. Most kids love this, especially my girls. Even though Ton has music sensitivity, there are a few songs that he tolerates (he even asks for them). So, whether it's dancing to Wii's Just Dance, or the Wiggles, or the Oompa Loompa dance from Willy Wonka, he's right there with them. If we were the shy types, we wouldn't even know that he likes dancing!
He even took to singing on the Magic Sing once. While his sisters sang Abba's "Mamma Mia," Ton belted out the not-overly-stimulating, "ABC Song." Hey, it was a start. He has added more to repertoire since and we are often surprised at how well he does them.
Lastly, being silly. In this family, silliness (and some craziness) is expected, if not required :). We are all looney in one way or another. It's not uncommon to catch Mom dancing in public or Tessa making a crazy silly face (Dad and Gabby are more reserved, likely from the other side :) ). What I've learned, however, is that silliness is very effective to draw Ton in to our world. We do crazy, exaggerated pretend play. I play super-psycho-face peekaboo (which he loves). His favorite is hiding under the blanket and I come close, breathing a heavy and low-pitched "hhhhaaaahhhhhhh." He shrieks with excitement and hides while I try to grab the blanket away from him. He giggles like crazy and shrieks some more. He asks for more and I've achieved engagement. He is in our world again!
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| He loves my super psycho-face peekaboo. |
One of the most important learnings I've had on this journey on the spectrum- seize every opportunity (to teach, to engage, to entertain). Sometimes, all it really does is make him look. As many other parents of a child with autism will say, however, often this alone is priceless. And a huge start.
We, parents of children with autism, often look for ways outside of us, outside of our homes; but the best intervention is right where you are. It is you, your spouse, your other children. More than any other therapy, any other vitamin, any other expensive medical intervention, you are the key. Start turning :) .
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| Sometimes, all you need is togetherness (and some Shakey's!- though not GFCF :) ). |
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