I gave up a lot when Ton was diagnosed. I quit my job (eh, I didn't enjoy it anyway :) ). Early intervention was the key to making him better and I jumped in and worked double time. I never left his side. I seized every opportunity to teach him. I was adamant about training the yayas on how to handle him.
Researching was critical in the first year after the diagnosis. I am, however, a seasonal reader. Weeks of reading alternate with months of no books. But when I learned that Ton had autism, I forced myself to read again. I have hundreds of bookmarks on my web browser with links to autism sites. I bought many books through the years too. Some sit on the shelf untouched, but a few have been very instrumental in Ton's improvement. (More on my ASD library in a later post.)
Within the first two years of our autism journey, I attended many seminars and conventions. The first was recommended by our first dev. ped. It was the Parents Training Seminar of the Center for Autism and Related Disorders (CARD) in BF Homes, Las Pinas (http://www.cardphils.org/). At the time of the seminar, it had only been a month since I found out about Ton. Many times during the 2-day seminar, I was teary-eyed. I would even go home and burst into tears. We were taught techniques we could use at home to handle our children. I learned about how varied the manifestations of autism are. I found out that it could be worse for my child (some kids bit themselves until they bled) and I became grateful. The biggest benefit of that seminar, however, was the realization that I was not alone. I met many ASD parents and have even remained friends with some through the years.
I also began to follow the activities of the Autism Society of the Philippines through their website (http://autismsocietyphilippines.blogspot.com/). I even attended their annual convention in 2009 at the SMX Convention center. After this, I attended the International Autism Conference held in the PICC in 2010.
I think it was in the book "What you can do right now to help your child with autism" by Jonathan Levy that I learned that we, parents, have to keep our children as busy as possible. It is during the idle moments that they "space out" and engage in their repetitive behaviors. So, being the obsessive person I was, what did I do? I designed and implemented a home-based therapy program for Ton. I researched, bought materials and set up a daily schedule and plan. It was not easy at the start (Ton had a lot of difficulty following instructions and concentrating) but he eventually looked forward to our sessions because I always had new materials (or to him, "toys").
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| Home obstacle course |
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| Our cabinet of home therapy materials |
My days were very busy during our first year because I accompanied Ton to all his therapy sessions. I was new at parenting my autistic child and it helped to be able to ask therapists questions about how to handle him at home. I would also seek their advice regarding school choices and other interventions. I also got to observe them at work and used some of their techniques in our home therapy sessions.
Four years later, I look back...what was it about me that allowed me to help Ton during those first few crucial years? For one, I was a crafter. I was creative and I loved making things. So I made charts, picture cards and schedule boards. I even made books about Ton (and the other kids). I assembled photos of family trips and special occasions into albums so that he could go back anytime to look at them and we could use them as springboards for communication.
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| Hand-drawn schedule chart to help him cope with my absence when I went to Europe |
I found that a sense of humor was one of the best ways to engage Ton. So it helped that I was a wacky (bipolar-ish) creature. Ton loves it when I read his books using crazy voices or when I make sound effects. He liked that I read a Blues Clues book on "Feelings" by singing the song "Feelings, nothing more than feelings. Trying to forget my feelings of love." He likes that we dance around a lot at home and role play with exaggeration. We tickle him like crazy and he loves it. These are often the best family times- when we're all silly and laughing.
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| It's okay to be silly and draw attention to yourself if you're in this family. While visiting Ikea, Ton saw the beds so he took off his shoes and crept under the sheets. |
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| The best family times are spent tickling and laughing. |
I think it was also helpful that I was a bit (my husband disagrees with the "bit" part) crazy myself. I can be obsessive about projects. Ton was a project like no other. He was, still is, the most important project of my life. There is no other option but success for this. So when I jumped in, I put on my blinders and just took off. I often butted heads with my husband about decisions I made. I was either attending too many seminars or spending too much money on therapy sessions. I was also criticized for taking on the "expert" role in the family. I was always telling people what to do, how to do things that were related to Ton. There have been many conflicts that arose because of my obsessiveness but all I can say now is, "didn't it work?" :)
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| If only he could talk, he'd say, "yes, Mama, you are obsessive and you talk too much!" |
What was an important if not critical part of my personality that helped us get through this was my faith. Often faulted by my husband for being too trusting or "always looking at the good in others" or believing that things happen for a reason (they do!), if not for my belief in my god I would not have had the strength to continue with this journey. Sometimes, the tears don't stop falling. Sometimes, the frustration at the lack of progress makes me depressed. Sometimes, just seeing Ton go through an episode is enough to ask God to just let me suffer instead of him ("sana ako na lang"). My belief in better days has paid off. We're not close to typical, but we've made great strides and I doubt if we would have done so without faith.
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| Better days have come and, hopefully, are here to stay. |
Why do I celebrate each day with a hefty breakfast or weeks with spa days? Why do I go out and have drinks? Because I now can. Healing and acceptance have come into my life. I am no longer depressed (most of the time) about Ton's autism. I know that things will get better as long as we keep working hard. And I know now why God gave me Ton. Because He knew I was a good mother and I would never give up on my child. Things do happen for a reason.
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| Drawn by Ton during an OT session with Teacher Lady |
(I have finally grown up :) ).
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