Our Intervention Team, Part 1

The members of my family are all American citizens. When well-meaning people find out about this, I am often asked, "shouldn't you move back to the US since they have the latest developments on autism intervention?" For the last 4 years since our diagnosis, I've debated this in my head repeatedly. And all those times I thought about it, the answer was always "no."

His speech delay and lack of engagement were the reasons
why we felt there was something wrong with Ton at age 2.

When my world crashed in 2009 due to the diagnosis, it was a struggle to find help. Before you could see a developmental pediatrician, you had to wait a minimum of six months. For occupational therapists (OTs), only the fresh graduates were available. If you need speech therapy for your child, you would have to wait six months or more (maybe forever). I was repeatedly turned away or ignored when I called therapy centers. There were some that were accommodating but they usually did not have a good pool of therapists. 

I got an OT within a week. In a month, I was able to find a speech therapist. I was so grateful to start the healing process that I jumped on any slot available. Ton's first OT was the sweetest woman. Teacher Rhodz was patient, kind and a supportive ally to a newcomer like me. For a whole year she worked with him on typical OT tasks- fine motor table top work and gross motor floor exercises. It was a wonderful first step but she was not able to address his behavioral issues. He remained hyperactive and distracted.

The family (minus Dad and Kuya Paolo) with
Teacher Rhodz (leftmost) in 2010

The first speech therapist, on the other hand, was unforgettable. A fresh graduate (most speech therapists leave the country as soon as they get their diplomas), she handled Ton like a case from her textbooks. She knew nothing about handling actual autistic children so she was never sensitive to his sensorial issues. In a room full of screaming special needs kids she would work with him. My little Ton would cry and ignore her and she would scream and shout at him to get his attention.  Let's just say our relationship with her was short-lived.

I researched again and called other centers. I finally got into a center in Makati. They had slots for OT, Speech, even SPEd (special education). I was the luckiest mom! All Ton's therapies in one center! How convenient! So we filled his week with therapists. At his busiest, he was there 4 times a week. 2 OTs, 3 Speech, 1 SPEd. For two years we stayed with them but, still, Ton's behavioral issues were not addressed and his speech was not progressing as fast as I hoped. So I kept looking. I also did not stop researching and working with Ton at home (see future post).

In 2010, I called the Neurodevelopment center of St. Luke's Medical Center (SLMC) in Quezon City (http://www.stluke.com.ph/aboutus/centers/16)  ready to be turned away. The big, highly-acclaimed centers already did, so what could be new with SLMC QC? They had no slots for any of the therapists I needed (not a surprise) but- they could schedule Ton for an evaluation while waiting for availability. I jumped on the chance. I was restless with the Makati center so I figured that I should just put my foot in the door and wait. 

He was first evaluated by Jerilee Casas (Teacher Jeri), a speech pathologist who pioneered the PROMPT method in the Philippines. Though I was not sure it was a right fit for Ton (It is my understanding that PROMPT is usually used for speech problems due to anatomical defects) I thought, "why not? There's nothing to lose." That was the best decision I ever made with Ton's therapies.

Teacher Jerilee Casas
(Source: www.promptinstitute.com)

While discussing Ton's evaluation results, I never assumed that a slot with Jeri would be possible in the near future. But during our talk, I begged her to help us find a speech therapist (if not her). She promised that she would see what she could do with her schedule so she could work with Ton; and she kept her promise. Whenever a patient of hers would be absent, she would call me the day before (sometimes even the morning of the day itself) to ask if we could come in. Most of the time we did; dropping everything else- school, other therapy schedules (in the Makati center), everyone else's lives, just to get to her. Driving from Paranaque to Quezon City was no laughing matter but we did our best to show up whenever she called. And after a year and a half of this we were rewarded. 

Teacher Jeri opened up her own therapy center in Tomas Morato called Thinkids (of course we still had to live with the distance) and we finally got a regular weekly slot. And this was when Ton's speech began improving. Jeri did not focus on the usual exercises that speech therapists use (flashcards, software, memorization of responses). She looked at each individual patient and assessed the real needs. For Ton it was obviously brain processing. 

In the Makati center, the speech therapist would teach Ton memorized responses to questions and he became good at it though it was far from functional (in fact, it was often useless). Jeri used play to engage Ton. She modified play routines so that he would learn how to develop functional speech. I would see them play board games, work on puzzles together, even preschool toys. Ton loved working with her because it was not "forced." I loved that Ton worked with Jeri because she cared about him and sincerely wanted him to get better. 

We've been with Jeri for two years now at her center. As soon as we got our weekly slot in Thinkids, we gave up the Makati speech therapist. Ton has since learned to process questions before answering. He has learned basic communication skills like taking turns and nonverbal communication cues (like facial expressions that mean someone is waiting for a response). We have overcome many hurdles but are faced with many others. 

Still not much of a talker but Ton has been starting to make
friends and understand social communication and norms.

I'm not as scared anymore, though. Jeri is now part of our family. The years with her have shown her commitment to seeing Ton to better days. But more than that, they have shown her love for my son. (Thanks, Jeri!)

I would never trade that for the latest autism interventions in the US. :)

(to be continued...)


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

Ton, Gluten Free, Casein Free... Mama, Fat Free?

Well, not quite :)

When Ton was diagnosed in August 2009, he became my world. I gave up my work, my social life, my health, even my sanity just to help him get better. Most of my time was spent researching, attending seminars, reading books and crying. I forgot how to be happy and resumed my old ways of co-dependency. I was happy when he was okay and sad when he was not. I was often frustrated, depressed and stressed. I felt guilty when I did things for myself because it took time away from my children. I was too busy taking care of others to take care of myself.

after the diagnosis, 200 pounds, September 2008

As I grew fatter and fatter, I felt uglier and uglier. But it went beyond aesthetics, deep inside I was very unhappy. I used to think that I didn't have the time nor the energy for diet and exercise. But as Ton slowly got better, I began to run out of excuses as to why I wasn't working out or eating right. Then I realized as I neared my 40th birthday- if I didn't become healthier, I would die early and leave Ton.

It scared me to let go of life without seeing Ton ready for the world. No one else, maybe except his Yaya or dad, understands Ton's language as well as I do. We do the best job at reading his cues and nonverbal signals. We even do pretty well reading his mind. So, what if, I wasn't around? Who would continue to research, beg for therapy slots and, most of all, TRY?

In September of 2011, I finally put my heart into it (the intentions were not purely for Ton, though, I had a shallow short term goal- my silver high school reunion). I wanted to get healthier by 40 but procrastinated. So I vowed that I would not reach 41 without losing some of the weight.

I went on the Cohen diet and by my reunion I had lost 30 pounds (from 185 pounds). By my 41st birthday I had lost 40 pounds. Six months after beginning my program, I had gone down all the way to 135 pounds (a 50 pound loss). It was not easy but I think I learned a lot from Ton's struggles with ASD- you sometimes get sidetracked, sometimes you fail but you try to get back on the program as soon as you can and you eventually see changes.

days before my 41st birthday

I not only looked better, I felt like a new person. I realized that being lighter made me happier. The exercising, the healthy food choices actually improved my mental wellbeing. I stopped feeling guilty about spending time on myself. In fact, I intentionally block off ME time regularly. I now have a weekly spa day. I go to the gym as often as six days a week and I take ballet lessons. I even treat myself to a nice hefty breakfast alone (morning silence is precious to me) once a week.

By being a healthier, happier person, I became a happier mother. I had more energy to fight Ton's battles and my heart and mind were better equipped to handle the ups and downs of the ASD roller coaster ride. I began to socialize and meet new people and inspired many others to get healthy again. Of course Ton hated that I seemed to be leaving the house more often without him, but he eventually got used to it. I believe he's even better now because of it- he tries harder to be accepting of the changes in my schedule.

Living a healthier life has made me a better role model for my children too. They see exercise as part of my (almost) daily routine. They even jump in and do floor exercises with me sometimes. Ton knows when I'm dressed for "exercise" and he knows that when Mama leaves wearing those clothes, she won't be back in less than one hour.

I've been able to play more with the kids 

I can now easily lift him up using my feet to the tune of the "Superman" march while he flies like Christopher Reeve (so 70s! Who is it na nga now?). I also get to do a little bit more chasing and clowning around with the other kids as well. Ton loves to play Wii's Just Dance and often wants the whole family in on the game. I also don't burn out in the middle of yaya's day off anymore. In fact, I even get to squeeze in a husband-wife date when yaya gets back from her day off :)

I realized how far I've come health-wise during our May trip to Boracay. Ton, tired and on the verge of a tantrum, cried as soon as the plane landed in Manila. I scooped him up in my arms and deplaned and walked as fast as I could to the car. It was not an extremely long walk but with a 50 pound crying boy (about to have a full-blown monster episode), it was a huge challenge. While I was sprinting fast I realized- two years ago I would not have gotten very far. I would have been hurting, sweating and panting (and maybe wanting to just have my own tantrum as well). As soon as Ton got to the car, he calmed down. Whew! Another monster moment averted, thanks to my daily 45 minute cardio workouts. ("So that's when they come in handy," I realized then.)

healthy, happy faces

The last two years have seen a lot of changes; not only in Ton but in me, as well. We've both had great moments of success then some regressions too. We both continue to struggle to maintain our healthy states on a daily basis. Routines and regimens are rigid and tough but we march on. By becoming a better person, I have become a better mother on her way to nurturing a better Ton.

Of breakthroughs, tough choices and breakups

During Ton's visit to his developmental pediatrician (dev. ped.) yesterday, we had a breakthrough. Dra. Reyes said, "ang galing niya (he's so good)! He's a totally different boy from the one I saw eight months ago!" Tears welled up in my eyes. Before we left her clinic, I asked if I could hug her and then I thanked her again.

Ton almost didn't make it to this appointment. We missed his original one (I forget things, okay? :) ) and only got in yesterday because I begged and showered the doctor's receptionist with sweetness.  We eventually got an appointment but for 4pm, which was really not a good time for Ton. To top it off, that 4pm was further pushed to 5pm due to delays. He had become anxious in the waiting hall.

anxiously waiting for one hour at the waiting area

Ton had also been regressing slightly since Tuesday. On Monday, we started a new round of anti-fungals (more on this in a later post) and so he was less focused and more stubborn of late. 

And so, despite the bad timing, despite the bad effects of his medication, we went to see Dr. Reyes. He did not do too well during the battery of verbal tests, answering "because...(then silence)" to many questions but he excelled in table top work (not a surprise, he always has). The biggest surprise to the doctor, though, was that he was able to sit down, wait patiently, follow commands and most importantly- self-regulate. In Dr. Reyes' words, "okay na 'to, kayang-kaya na regular school (he'll be okay, he will survive in a regular school)."

going to his classroom in a regular school with his little sister, Tessa

There have been many breakthroughs in Ton's journey but this one is long overdue. We have not heard this much good news from THE Dr. Reyes in the longest time. 

On my drive home from Makati Med, I sat silently in the car thinking, "how did we get here? What were the good things we did? What worked? What didn't?"

How did we get here? Tough choices! We deprived Ton of food he loved- cake, cookies, pizza, chocolate, processed food and juices. We were firm in saying, "no," even as we watched him shout, scream, hit us, flail his body on the floor (monster moments, I call them). I turned around and cried when I saw him at his worst and prayed that he would crash down to calmness soon. We broke up with many therapists when we felt that they weren't working well with him. Most of all, we kept trying new things and we kept working hard. 

So far, we've "broken up" with 4 occupational therapists, 3 speech therapists and 1 special education tutor. We've abandoned a preschool 2 days before the start of classes because they "boxed in" Ton with the lower functioning children. We've gone to and left 3 therapy centers in a span of 4 years. We've consulted with a Defeat Autism Now (DAN) doctor once then never returned. Ton was diagnosed by another dev. ped. but we moved to (more like begged for a slot with) Dr. Reyes after 1 year. These are things we are not proud of but they were tough choices we needed to do because had to keep trying.

In a few weeks, we will try something new again- methylated B-12 shots, lauded by many ASD parents as a "miracle cure."    I will have to inject a tiny needle in his butt cheek a few nights a week. How will I muster the nerve to hurt my son intentionally? Beats me. All I know is that this is worth a try, even if it kills me inside to see him cry.

Forever in search of "the cure"

The B-12 might work. It might not. It might lead me to another breakthrough or we might have another breakup. I'm praying for a happy ending but I'm ready for a heartbreak, as well. Because just like real breakups- we fall hard, we mourn, then we rise again and try again. Sometimes things work out but many times they do not. It's a never-ending series of trials and errors. The journey, and life, continues...

no one is prouder of you than Mama