Waiting patiently, trusting and believing :)

I was an impatient child/teen/young adult. I was impulsive and always wanted things my way- NOW! Even if I could not have whatever it was that I wanted immediately, I would force a situation where I could get it eventually. 

I remember when I was 13, I wanted so badly to look like a nerd. So I begged my mom to get me braces and eyeglasses, neither of which I needed. We could not afford braces but the glasses she gave in to because I told her I couldn't see too well when I was in school. I was "nerdy" for a few days but it's been 29 years since then and I still have pretty good eyesight.

And then, when I was 16, I got a job teaching aerobics but I had no workout shoes. So I told my mom to accompany me to the store so "I could look." With a mega-dose of puppy face and a droopy posture, I came home from the trip with my new Reeboks (which I used to teach a total of two aerobics classes!).

Of course, it wasn't always about shallow material possessions. At 20, because I hungered for the love of my family, I decided to start my own! I got married and had a baby within a year (wait, maybe it wasn't in that order ;) ) Of course that marriage was not very loving (even if I forced it for a few years) but because of it I now have a very loving 22 year old son.

I was 20 when I first became a mother.

Finally, for my wedding (at 31 years old), my then-fiancé (now husband) gave me a fixed budget to work with. I wanted to have the wedding that I've always envisioned but things were so expensive in California that it was tough to work within a budget. (Actually, as my husband knows, I really don't like budgets :) ) What to do? I bought stuff from eBay, bought my wedding gown from an outlet in LA (then embroidered beads on it), asked my mom to arrange the wedding flowers, and then I baked my own wedding cake. Well, part of the cake collapsed in transit to my destination wedding, but I stubbornly pulled off almost everything I planned.

Flowers by Mama, gown embroidery by me,
cake by me (with the help of my friend, Tala)

I've been so spoiled because I often could get my way (albeit short-lived). So when we were faced with the news of Ton's autism, it was the most helpless I ever felt. There was no forcing things. I could not manipulate people, things and events just so I would get what I wanted. No puppy face, no eBay, no amount of home economics skills would work on this one. 

When you are put in that situation, as some of you (who've had gravely-ill loved ones) are familiar with, you wait patiently, trust, and believe.  You learn to surrender and accept things you have no control over. You are suddenly mortal and, unlike your previous impulsive self, there is no going anywhere but through it. 

You still work hard. You bug people- therapists, doctors, teachers. You cry- over both triumphs and defeats. You keep thinking (of new interventions, possibilities) and you keep trying (and look out for signs that things are getting better). Then you pray like you never have before; not about you and what you want and need, but for someone else you love much more than yourself. 

Four years after the diagnosis, the dust settled and I realized that I had grown up. I wasn't whining and stomping my feet demanding results. There is a bigger picture I have yet to see. There is a destiny that has to be fulfilled. This may be the most excruciating way to see its fruition but you accept and trust that you can only do so much. Things have to unravel in their own time.

He will come out of his shell eventually :)

When that "happy" time will come, I don't know. Years of waiting patiently and trusting have led me to the belief that we will have our happy ending :) You see it now, little signs in Ton. He is communicating more. He is spending more time with us. He is showing us how he feels in little subtle ways. You can't keep hanging on though, waiting for the next one. The signs come as they should. In a sequence and frequency I will never understand. But they do happen and are proof that our happy ending is on its way.

So take your time, my baby boy. I will be here as long as you need me. I will not give up. I will be patient and accept your pace. Because I believe in you and know that you will finish this journey in your own time. Because, more than anything, YOU are worth the wait.

Take your time, Ton. I will be waiting.

When my old friend came to visit

What happens when, no matter how much you try to be a good mother, you can't prevent your child from suffering? In this journey, self-doubt is not uncommon, especially after you witness your child's meltdowns. 

It happened tonight. Because Tessa would not leave Ton's side while she played with the IPad, he freaked out and blew up. Tessa left eventually but there was no stopping the crash. We had reached "the point of no return," as I call it.

His meltdowns are always gut-wrenching.

I sat there, trying my best to calm him down. "Breathe, Ton. Breathe so you will stop crying." He tried a couple of times to stop the meltdown, but he kept going back to the screaming and the tears.

Then, he said, "I want hug." So I did, hoping the deep pressure of my arms around him would relax him. It did not.

Because I knew that he always looked forward to playing with the Galaxy Tab after his night bath, I repeatedly said, "do you want Galaxy Tab?" He would run to it and play for a few seconds but then he would go back again to the screaming and crying. Over and over for 30 minutes.

As he crashed over and over, I crashed with him. I would watch him try hard to stop himself from crying because he wanted to play with the Galaxy Tab badly, but he just kept losing the battle each time. During those few seconds of calm, I hoped that he would win the fight. Each time I was optimistic that he would end this night happy. Instead, he just pushed himself deeper and deeper into his own internal chaos. 

My heart broke. My insides felt like they were being squeezed bloodless. There is truly nothing more painful for a mother than to see her child suffer; but to watch your little boy, in the span of 30 minutes, ride waves of emotional extremes again and again is torture.

I feel it deeply when he goes through it, you know- the peaks and troughs of these emotional waves. It is a familiar feeling from when I was younger and depressed. It is in the heavy crying that emanates from some invisible pit within. It's in the conscious effort you give to calm yourself down. It's in the extreme anger and energy you want to unleash that makes you want to rip pillowcases and throw things around. Most of all, it is in the gut-wrenching plea, "please, God, make it stop! I don't want to cry anymore!"

I was depressed for many years when I was younger.

So I'm familiar with what Ton goes through but I can only imagine how much tougher it is for him because he cannot verbally let it out. And, like when I was 19, I now plead, "please God, make it stop!" but not for me but for my beloved son. And, just like when I was 19, my tears flow from deep inside because my old, familiar friend "depression" once again came to visit.

I was lost most of my life. The sanest moments I've ever had were my happy moments of motherhood. To see my children happy, healthy and at peace- those are the things I now live for. So when Ton goes through this internal turmoil, the ground disappears from under me again and I am once again sucked into this vortex of emotions that I cannot control.

What does a good mother do? For me there really is no other option but to get sucked in, ride the waves, crash, struggle to catch a breath then do it all over again until all the energy is gone- in him and in me.

Now that Ton is asleep and I have stopped crying, I ask myself again "what happens when you realize that no amount of good parenting will stop your child from suffering?" 

You say a short prayer of gratitude that your child is at peace now. Then you hug yourself tight and say a little prayer for yourself, too. "Dear God, please let tomorrow be a better day. And give me the strength to hold on for whatever will come our way."

I would do anything to see him like this
all the time.

My Journey

So it seems I have an easy life. I have my sacred breakfast dates with myself a couple of mornings each week. I have a weekly spa day. I even try to squeeze in dinner and drinks with friends a few times each month. I remember a time when I wasn't like this- when my whole life was Ton; when doing something for myself made me feel like a bad mother.

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").

Home obstacle course

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.

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.

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.

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?" :)

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.

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.

Drawn by Ton during an OT session with Teacher Lady

(I have finally grown up :) ).

The "Not-so-secret" Ingredient (in the secret recipe)

Happy diagnosis day (August 7) to our family! Of course 4 years ago it was devastating, but that day was the reason why Ton is a much better child today. Four years of hard work (by the teachers/therapists, the family and, most specially, Ton) have brought great gains and successes.

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.

He never goes anywhere without "medium pig."

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.

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.

Ate Gabby has been more nurturing with Ton since she was
told that he has autism.

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. 

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.

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 :) ). 

By providing creative outlets for him to express
himself, he is better able to self-regulate.

Everyone has fun when in the ball pool.

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!

                                                        Ton and Tessa do the Oompa Loompa dance.

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!

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 :) .

Sometimes, all you need is togetherness (and some Shakey's!-
though not GFCF :) ).

Our Intervention Team, the final part

Speech Therapy once a week, occupational therapy twice a week; all in Quezon City. Ton goes to a regular Montessori school 3 hours/day on weekdays. There are also SpEd (special education) tutorials twice a week in Thinkids and swimming thrice a week in Therapy Works. How's that for "intervention?"

Every weekday from 8 to 11 am, Ton goes to a Montessori school in the south. He is surrounded by typical children- active, communicating and engaged. Before he went to this school, he was in a traditional preschool where he got used to routines, appropriate classroom behavior and traditional teaching methods.  In January 2013, we started to look at his options for grade school. We were convinced that a regular school would be best for him but there weren't many who would entertain my phone inquiry after I would say that "my son has high functioning autism."

Because my two girls already go to Montessori, the school was always an option. I was very hesitant, however, having been told by many (dev. peds., therapists, other parents) that children with autism do not manage well in a Montessori classroom. The Montessori set up is very fluid, very free. Materials are laid out according to subject areas all around the classroom. Children learn at their own pace. They make their own choices as to what materials to work on. They eat when they feel hungry. They can walk around the campus if they felt the need for a break.

In Montessori classrooms, materials are organized
in shelves and many children work on their own.

I imagined Ton in this environment. It would be like Chuck E. Cheese's for him. He would run around, play with toys then move on without finishing tasks or packing up. I dreaded the sensorial overload- the music from the bells and tone bars, the visual stimulation from all the colors of the materials around the room. I feared that he would not be able to self-regulate in such a busy sensory environment. So I asked Teacher Lady, his OT, how she felt about Montessori and she gave the wisest school-related advice I've ever received. "Mommy, it's not the school. It's the teacher."

She was right. A school would be just any school if not for the quality and dedication of its teachers. In Montessori, Teacher Leah is one of the best teachers I've known (I've been a student of the school, an employee of the school and now a 5-year old parent of the school.) I realized this during the assessment. Ton, unfamiliar with the ways of Montessori and the environment, threw a full-blown tantrum when he could no longer regulate himself. I feared rejection, but Leah was not willing to dismiss my child after seeing him for 1 hour. She said, "let him spend an hour a day for a week. Then I will make my decision."

We prepared for the trial run. I prepared picture cards of the Montessori materials, provided a schedule board and talked to Leah about what to expect and how to handle issues as they arise. I briefed her on Ton's language and how to read his cues. She listened and she applied everything.

Given a schedule board of his work, Ton was able to stay for 30 minutes the first day, then 1 hour the next until by Friday he was in the classroom for two hours. Leah was convinced that she was equipped to work with him. She also saw his potential. That is what a true Montessori teacher is- someone who will help develop the child's full potential. And, oh, for Ton the potential was boundless.

Tessa always holds her Kuya Ton's hand when
they enter the school together.

It's been 2 months since Ton has been under Leah's care and he is thriving in the environment. He is now on a 3-hour morning schedule, following a pre-planned schedule of "works" that Leah either presents or Ton does for review. He is now able to join the singing and dancing (with his ears covered) in the sharing area prior to dismissal and is even able to tolerate the sound of the musical instruments in the classroom (he is allowed to wait in the hallway while a child is playing an instrument).

Leah has gone beyond regular teacher duties and has met with me regularly for updates. She texts me when she has concerns or when she notices odd behavior. She asks me how to handle issues and makes me interpret Ton's language. I visit her in the school regularly to take pictures of the materials (for schedule cards) and we have even met up at Starbucks once for a special parent-teacher conference. Yes, Teacher Lady, it is not the school but the teacher.

First ever in the school- a web Parent-Teacher Conference

Because, however, a Montessori education does not approach academic expectations at the same pace as traditional schools, Ton has been undergoing SpEd tutorials for 3 years now. His current SpEd tutor is Teacher Maita from Thinkids.

Maita, Jeri's (speech therapist) cousin, has the same dedication and passion for her craft as Jeri has with hers. She works with Ton on reading and comprehension (Ton can read but has difficulty interpreting the meaning of his sentences). She also engages him twice a week in conversations that help improve his language. Because of her, Ton has become interested in trying to read on his own. He has also a renewed fascination for books now that he knows that when words are put together they make sentences that tell the story.

Ton loves reading Caldecott medal books.

The biggest surprise (now a necessity) to me was how swimming has become important intervention for Ton's autism. Prior to swimming, Ton had difficulty with self-regulation- he was hyperactive, often spaced out, with poor concentration, and in his own world. Because his language was still not fully developed, he used off-behaviors and emotional outbursts to deal with frustration and disappointment.

Any child would love to learn to swim this way!

I started Ton on swimming lessons with Teacher Jillo of Therapy Works as a summer activity to fill up his time. Jillo has years of experience in teaching swimming to special children. He uses toys and play to help the child adjust to the water, then uses them again to make children practice swim strokes from one side of the pool to the other.

It was a revelation how it helped Ton release his extra energy. It was also mentally calming for him to be in the water. He has since performed better in school, in therapy and at home. We have found that swimming three times a week is best for Ton. When he misses a single session, he tends to be more irritable and has difficulty concentrating and self-regulating.

Jillo is trained and experienced in handling special children.

I was gone from the blog for more than two years. In that span of time, I tried different therapies and therapists. I learned what works for Ton and what does not. Who is effective, and who is not.

In two years, I was able to build my intervention team, the "secret recipe" of Ton's successes so far. Jeri, Lady, Joan, Leah, Maita and Jillo. Not many parents get to say that they have the best therapists/teachers in the country. I can.

Things can only get better :)

Our Intervention Team, Part 2

Each child with autism is different and, though most have language difficulties, the disorder is manifested behaviorally in various ways. Ton was a physically active child, not hyperactive but he liked climbing on tables and standing on chairs. He would zoom through the house without concern for his safety, many times bumping his body on walls. Sometimes during tantrums he would lie on the floor and flail his arms and body around, hitting his head on the concrete.

He did "cute" things too. We actually thought they were signs he was a genius (we still believe he is) before we knew they were signs that he was autistic. He liked lining up toys, segregating them into categories or by pattern sequences. He memorized the alphabet and numbers even before he could answer yes/no questions. He was also fixated with animals, able to identify even those that we adults may not be familiar with.

Lining up toys

In school, there was never an issue about academics. He was sometimes a faster learner than the typical kids- never failing tests and excellent at paperwork. But his behavior was a hurdle that prevented him from fully benefiting from the school experience. This was why our first dev. ped. recommended that Ton go through Occupational Therapy (OT) twice a week.

He loved animals so much!

Our first OT was Teacher Rhodz (mentioned in Part 1). She was a sweet and caring therapist but no matter how hard she tried, Ton's behavior improved little. 

After a year with Teacher Rhodz, we found another OT in Makati who was very hardworking and concerned about Ton's wellbeing but was too "raw" to be effective. This one was just a few years out of college. She used her techniques without tweaking them to suit the child. To give her credit, though, she helped Ton with school skills (Ton used to hate holding a pencil). She also got him to sit longer through table tasks. 

A year and a half after our diagnosis, we began to see renowned dev. ped. Dr. Alexis Reyes. She noticed Ton's behavior- lack of focus, fidgety, no self-regulation. She said, "you should look for another OT. You should try to get Teacher Lady." Ahh, THE Teacher Lady. 

THE Teacher Lady
(Source: www.autismsocietyphilippines.blogspot.com)

I've heard of Lady Suarez long before she was mentioned by Dr. Reyes. Our first dev. ped. recommended her but the wait to get a slot with Teacher Lady is just as long as with Dr. Reyes. You need a miracle to get a slot with either; and because we already got lucky with Dr. Reyes, there was no way we could even hope for a chance with Teacher Lady. But God has his ways :)

When we started seeing Teacher Jeri (Ton's speech therapist) in St Luke's QC on a "last-minute replacement" basis, she started saying that Ton needs better OT intervention and recommended some of the good OTs in St. Luke's, including Teacher Lady. I said to Jeri, "that's impossible! I asked the receptionists how long the wait was for a slot with Lady and they said not to hope anymore."  Jeri said, "I'll talk to her." This is why I owe Jeri so much.

A few weeks after my talk with Jeri, the St. Luke's receptionist said that Teacher Lady can schedule an evaluation for Ton. No therapy slot, just an evaluation (pretty much how we started with Teacher Jeri). Of course I jumped on the chance even if it would be our only one. But it was not. 

We eventually got a "last-minute replacement" arrangement with her as well, traveling to where there was an absent patient- St. Luke's QC or Therapy Works in Paranaque. Like with Jeri, we forgot everything else and just hopped in our car and drove. These were the toughest but the best sacrifices we made. 

People would say, "why Quezon City, it's so far?" or "ha?! P1500 for a special session in St. Luke's just to see her?!" (The rate was different for our arrangement because Ton was not a regular patient so he had to pay the "evaluation rate" all the time.) Oh, if they only knew Lady.

Teacher Lady is the "autistic whisperer." When Ton comes from a therapy session with her, he improves dramatically for two reasons- Lady can "read" the children by just observing them. She looks for reasons behind the behavior- the triggers. Then she assesses if there are sensorial causes for the behavior. She addresses those causes and the behavior improves; not immediately, but through time and through the second reason- she gets the parents involved.

When Ton first saw Teacher Lady, she would ask me to sit through the whole session. I would observe them at work. I would ask questions while they did. She would analyze the concerns and help me address them on my own. She would often say, "look mommy. When he does this... it's because... so, this is what you should do." Each time, I learned. Each time, I left the session so enriched and enlightened, and armed with a few weeks' worth of strategies to help my son. He was not the only one being cured, I was getting better too.

It's been two years since we started our "last-minute replacement" deal with Teacher Lady and, unfortunately, that's still the arrangement we have. But imagine if we could see her weekly! Imagine if we could be helped like that on a regular basis! But we can't. There are many other kids she wants to help with different needs and different concerns. And it is not right for us to feel bad about what we have now. It's actually a big blessing to be just given an hour every two months. 

In Thinkids QC, Teacher Lady guides a junior OT named Joan Go on how to help Ton. Pretty much in the same mold as Lady, Joan has that sensitive eye that Lady possesses. (I'm sure in a few years, the wait to see Joan will be just as long as Lady's.) Like Lady, she analyzes and thinks the behavior through before trying to fix it. More than anything, it's the genuine concern that cannot be replaced. Ton now sees Joan twice a week. 

Whenever I meet other parents of children with autism and we get to talking about therapists, I learn that many of them choose the cheapest ones or the nearest ones. I want to tell them "No!" but I just tell our story. They may think that we're wasting time (by traveling so far) and money (by spending a bit more) by being committed to these therapists. Jeri, Lady and Joan have shown their commitment to seeing Ton get better. They have gone beyond usual therapy protocol and accommodated my calls, emails, and texts, even during off-hours. They care for my son sincerely.  My commitment to them doesn't even come close to what they really deserve.  Thank you very much, ladies!

(to be continued...)

A big hug for his Thinkids therapists!

Therapeutic intervention for kids, inc (THINKids)
5 Tomas Morato Avenue, Quezon City
+639277234769

Therapy Works
726-D Quirino Ave., Paranaque City 
632-8530121