Sunday, October 28, 2018

At a crossroads

Last year, I received a message on Facebook regarding an article I wrote on Smart Parenting on Special Education options for children with autism. 

This mom was the third parent who reached out to me because of what I wrote. I am always touched by the lengths parents go through just to get answers when on the autism journey. But I am more humbled by the realization that there are so many of us out there who are still struggling to find answers. 

Here is my exchange with Chiara:

"Hi.  I am not sure if you are the same person who wrote a story about (the) struggles (of) finding the right school (for) an autistic child, Ton.  I am a mother of a 7 yr old boy with ASD.  I cannot tell (you) enough (about) my struggles but I guess one parent with an ASD kid would understand another with one.

I am just desperate for my son and willing to give it a try back there if there is a school that fits right for my son’s needs.

Me: Hi. Yes, I am the one who wrote the article in Smart Parenting. 

I looked at your profile and I'm guessing that you are now living in Canada? I am not familiar with SPED services in Canada but I always thought that they were superior over the ones available in the US. I once lived in California and have heard horror stories about the limited resources and services available and how a parent has to "fight" for the right of their child to avail of the government-funded SPED programs. Moreover, private therapy sessions are insanely expensive and so those are rarely an option for most families with a special child. 

I have had that option to move my (now 11-year old) son, Ton, back to CA to avail of public school SPED intervention but have hesitated doing so for a few years now. I have instead found temporary contentment in his current school, One World School (OWS).

Like most good SPED schools in the Philippines, OWS is pricey. Annual tuition now runs at P450,000. This, aside from the private therapy sessions that total almost P42,000 monthly. For now, I'd take this amount over a public SPED program in CA for the following reasons:

1. Love and care from teachers/therapists that I don't think my son can get from their American counterparts. Due to fears of lawsuits, most educators are afraid to hug children or to firmly discipline them. The Filipino touch when it comes to education is priceless. I want my son's teachers and therapists to love him and approach intervention with that kind of caring in mind. 

2. I have the best specialists in the country. I waited years to get slots for the best developmental pediatrician, therapists and, now, school. I can only imagine what caliber my son will have access to in a state-run SPED program. 

3. "Affordability." Even if I pay roughly 1 million pesos annually for my son's intervention, that amount will not come close to what I would have to spend for a good private SPED school and private therapists in the US.

4. Support staff. Because I can affordably hire yayas and a driver here, I can be sure (almost) that my son will always be in good hands. Of course my support staff has undergone autism caregiver training, too, to allow them to better help Ton. 

5. Quality of life. Because I have a lot of help and family here, I get a lot of support emotionally, mentally and physically. There is more time to take care of myself and, consequently, I am a better mother to my children. This is something that would be impossible in fast-paced America. 

I want to emphasize that my reason to keep Ton in the Philippines is temporary. Ever since our autism diagnosis, I have been all-out in our intervention efforts. Right now, I think this is what Ton needs. Until we feel that we have exhausted all channels to help him here, we will stay here. 

Eventually, our family predicts a return to the US; partly because my husband stays there most of the time due to work but mostly because Ton's needs might change.

As he enters his adolescent years, he may need access to more services and opportunities that the Philippines might no longer be able to provide; for example, the opportunity to go to college or to be employed. These are things where the Philippines is still at its early stages. 

Let me know how else I can help you. Best of luck and prayers for your son and family. Hang in there. After 9 years of autism, we are grateful for the beauty and blessing of Ton. Take care."

It's been 3 years since I wrote a blog entry here. During that time, I would catch myself with an idea, something to share. But due to life's pressures (particularly my own), I have shelved any writing, pending the resolution of my own issues. And, if not for my "spring cleaning" of my Notes app, I would not have stumbled across this Facebook exchange again and found the urge to write about this. Because it is extremely timely.

Ton is now 12. Our struggles are different and we are at a crossroads. On the one hand, here we are savoring the security and love that he gets from the best SPED school in the Philippines. But on the other, we are slowly accepting the reality that we have to slowly help him live independently, as he should be when his parents are gone. And that is where America is once again tempting. 

Part of the preparation for the move to the US is training him on
Independent Living Skills like this.

Adolescent and early adulthood autism programs are still in the infancy stages in the Philippines. I envision my son living in an apartment on his own, buying his own groceries, gainfully employed. And, in as much as we could easily just provide for him comfortably in the Philippines for the duration of his life- with a yaya and driver at his beck-and-call, that would be a disservice to him. I don't want him to keep living the rest of his life as a child when he has the chance to experience it like an adult. With disabilities, yes, but independently. Eventually, it seems that we will have no choice but to bring him back to California.

We've also had to keep him busy with
physical activities in preparation for adolescence.

The decision will not be easy. We have three other children, one of which is going to college soon. My youngest daughter has some social anxiety issues. And, most importantly, I still have to sort through a few more cobwebs in my head. Until things fall into place, there is no budging us from our current arrangement. It used to be that Ton ran our world but not anymore. Every family member's wellbeing has to be taken into consideration.

He has weekly archery, running and rock climbing
sessions with coaches.
I've been anxious. I haven't been sleeping well. My mind won't stop playing out scenarios and options. But, one thing I've learned after going through my own emotional, mental and physical struggles these last five years- things play out as they should. There is no forcing things. I will know when the time is right. And it is soon. 

My "forever baby" is no longer a baby.

Wednesday, February 18, 2015


Last night over dinner, I asked my youngest daughter, "Tessa, what baon (packed lunch) do you want for school?" She gave it a quick thought and said excitedly, "PIZZA!" "Okay, pizza," I said then I continued to eat. Suddenly from another side of the table (that was usually silent) I heard, "I want burger steak, and corn, carrots and peas." Monotonously said and lacking all the excitement that Tessa had, but it didn't matter at all to me. They were words from my once-silent Ton.

Ton has slowly been joining our conversations these last few months. Dad, yaya (nanny) and I would occasionally look at each other and smile whenever we catch him make an "advanced" language attempt. Any other parent would not gloat if their eight-year old said robotically as they pass the airport and see an airplane taking off, "LOOK AT THE AIRPLANE. THE AIRPLANE IS FLYING IN THE SKY," but I do. My heart leaps. I am grateful.

Look, ma, no more headphones! Ton stopped wearing his
headphones a few months ago and has learned to cope with
the chaos of birthday parties. (Here with Tessa on her 7th
birthday party)

Many parents would be annoyed at a child who is kulit (repetitive) but when Ton says repeatedly in a span of five minutes, "I want banana ice cream," while staring intently into yaya's eyes waiting for a response, I celebrate. Ton is engaging another person in conversation. He is looking for non-verbal cues from yaya. More importantly, he knows that he deserves a reply so he doesn't stop until he gets one. So after eliciting no response from yaya, he attempted to modify his sentence and said, "Kumon first, then banana ice cream." Only then did yaya say, "yes, Kumon first then banana ice cream." (Special note- we only serve him non-dairy banana "ice cream" from frozen bananas using a Yonanas machine.)

Thanks to our Yonanas machine, Ton gets to eat dairy-free
banana "ice cream" every day!

In the five and a half years after his diagnosis, we worked hard- family, teachers, therapists but Ton especially. We've tried a lot of interventions, therapists and schools. But the biggest changes happened when I altered my perspective.

For years we always knew that Ton had exceptional intelligence. We always believed that his deficiency was merely verbal. So we only chose regular schools for him. We wanted him exposed to neurotypical children. He did well as a preschooler but as he grew older it became more and more difficult for the teacher to manage him in class. He became uncooperative, physically aggressive and detached.

Last school year, after he turned seven, we realized that he was no longer coping with the demands of a regular classroom. The bigger realization, though, was the acceptance that Ton was a special child who needed to go to a special school to be taught by Special Education teachers.

The search for the right school was very tough, though. There are many special schools out there. I wasn't going to trust my Ton with just any school that would accept him, even if only a handful of schools even considered taking him in. It even came to a point that I was ready to homeschool him if no acceptable school would take him in.

Then we visited Ton's current school and for the first time in a very long time I was hopeful. The school director was warm, well-educated and had extensive experience in handling children with autism. If I enrolled Ton in this school, I thought, he would finally belong to a small class of six children and have an IEP (Individualized Education Program). Of course all this came with a hefty price tag but a long-time parent of a special child could see why- the faculty was caring, educated, experienced and intensely passionate about their students. (Even the school yayas were consistently "in" on addressing Ton's negative behavior!)

Ton has the moves! He was also the best-dressed
elf during the Christmas program. (Of course, I'm
biased! I sewed the costume!)

When the school director and head teachers finally laid out a plan for Ton, I was relieved. For years, my husband and I felt that we were battling autism alone with mostly Google and books to rely on for reference. School year after school year we had to be involved in how teachers interacted with our child. We had to receive immediate daily feedback and, in return, we had to give the teachers tips on how to communicate with him. We often had to "teach" the teachers how to manage and work with a child with autism.

I've read a lot of books these last five years. All my love and
all that knowledge just wasn't enough to help Ton.

Then suddenly, we didn't. Suddenly, we were not the only experts on Ton. Most importantly, we could let go a bit and trust- that these teachers, this school, knew what it was doing.

I still thank Ton's past teachers- the most loving educators I've met. Their passion to help Ton could never be questioned but Ton's issues had evolved so greatly that special intervention was critically needed. A while back, I used to think that love was enough to make him better. That if I read enough and worked hard enough he would improve. Finally accepting that we needed help from special education professionals was the key to Ton's recent successes.

One of his biggest successes is self-regulation. In Tahoe, Yaya
wouldn't let Ton ride the sled until he calmed down from a
minor meltdown.

After a semester in his new special school, Ton made great developmental strides. Still, I don't want to gloat. There are many more hurdles to overcome;  a lot of obstacles to conquer. Unlike before, though, we have a plan. Ton has a program in place. In tandem with already exceptional therapists, we have exceptional teachers as partners now. So I worry less and finally see the light at the end of this autism tunnel.

Last week we visited Dra. Alexis Reyes, Ton's developmental pediatrician.  She said, "his non-verbal skills are now at par with typical eight-year olds. Amazing!" I became teary-eyed. News like that had been so rare in the past years. "He still needs a lot of work with language, though, because that is a stumbling block to further to development," Dra. Reyes added. I didn't mind! I was very happy. I said (with goosebumps) to the doctor, "I think when I finally accepted that Ton needed to go to the right special school, that's when things got better. We started moving forward."

Another milestone? Enduring the unbelievably long lines at
Disneyland on New Year's Day!

Just this morning, Dad walked into the room and saw Ton writing and illustrating another one of his "books" (sometimes it's about nursery rhymes, or numbers, or the alphabet). He looked into Allan's eyes and said, "eat breakfast at Pancake House." Dad said, "no Pancake House today. On Sunday, when it's Ton's day (when he gets to be with Mama and Dada alone), we will eat in Pancake House." Dad started to go on and do something else when suddenly Ton blurted out, "eat fish! In M Cafe!" (Dad laughed, because of the very swanky alternative Ton chose... I became teary-eyed behind my smile :) )

Sunday is Ton's day! It usually means a Pancake House breakfast.

With his sisters at M Cafe, loving his Fish n' Chips

Acceptance. Gratitude. Celebration. And hope. Hope for the years ahead.

Nowadays, Ton wants in on the joke. He's slowly absorbing
the craziness of the rest of the family!

Saturday, August 2, 2014

My Midlife Crisis

Most of my teenage and young adult years were filled with whining, self-pity and selfishness. For decades, I prayed (more like complained) to God about my problems. I questioned my self-worth. I cursed the world and the people around me for hurting me and for pushing me into my sorry state. I remember vividly my “crazy” days- when I’d sit in front of my mirror for hours talking to myself and crying (I was recently shocked when I was told that this was not “normal”). The world around me was expected to stop because I was having an emotional crisis. 

I was a drama queen most of my life.

It was when I moved to the United States that I started to let go of (some of) the craziness. Because daily life was so hectic and stressful, I eventually found it harder and harder to succumb to sadness. I remember one day when my daughter was a few weeks old and I was depressed I began to “emote.” I began crying about something I no longer remember (I’m sure it was minor). I tried to push myself deeper into the emotions, like I used to when I was younger. I wailed for only a few minutes because my baby began to cry too. So I stopped crying. My tears had to wait until my daughter was better.

First-time motherhood in America was so tough that
I decided to chop off my hair. (Hmm, I had my regrets :) )

Parenthood does that to us. We put our children’s needs first, as it should be. But what happened to me was the extreme. After a while, everyone’s needs were first. My wishes were less important than the rest of the family. My needs could wait. My dreams could be abandoned. I built my life around my family. They became my life. Being ME could wait until they were all better.  

At 38, I looked much older (and honestly, uglier) than my
66-year old mother (rightmost).

I remember when my American friends were talking once about spending a weekend in Vegas for R&R. I thought, “how selfish! Why go on a vacation without the children? Families should be together as much as they can.”  I spent a decade like that. I took care of everyone except myself. 

When Ton was diagnosed with autism, I was all the more convinced that my happiness and wellbeing would have to wait. Ton is priority. Then the other kids. Then my husband. Then if there’s still time and energy, maybe me. But there was rarely any left for me and even if there was, I felt too guilty to seize the opportunity.

I don’t regret those years that I put everyone else first. During those times, it was what was needed, specially by Ton. Because I put my needs last, I was able to push full-force battling Ton’s autism. I was able to obsess about helping him get better because nothing was more important. I did not resent him nor the rest of the family for the time and energy I spent on his intervention. I didn’t even feel I needed to be rewarded for being such “a great mom” (as my close friends and family would call me). I did it all for love. 

His happiness came first. It still does.

For years after Ton’s diagnosis, I kept giving my all. Until one day I realized that there was none left for me. When Ton started to get better, he needed me to be less obsessed with intervention and more trusting in his ability to overcome the autism. The other children also started to be more independent and needed me less. My husband eventually settled into his OFW status and our long distance marriage. 

One day, I was actually bored and I began to feel depressed again because I was 40. I was “old,” felt fat and ugly and I had no life of my own to speak of. I had abandoned my hobbies. I rarely socialized. Without my family to obsess about, I realized that I knew little of who I had become. But unlike in my youth when I would sit in front of the mirror and cry, I decided to simply do something about it (or maybe I just didn’t have enough mirrors in my house).

For years I kept telling myself, "nevermind if you're fat, at
least you have a happy family." Eventually, that excuse was
no longer enough and I became very unhappy with myself.

I vowed that by 41, I would look decent again. I enrolled in the Cohen program and after dropping 65 pounds in six months, I had never felt better physically. The weight loss allowed me to pursue my old hobbies and interests, my favorite of which was ballet. I enrolled in Ballet Philippines’ ladies ballet class and wanted to cry with happiness during my first class. I was pursuing my childhood dream after all, though not professionally. 

Dropping ten dress sizes allowed me to fit into nicer looking clothes. I had already stopped crying in front of mirrors years ago. Because I had dropped from a size 16 to a size 6, I no longer cringed when I’d look at myself in the mirror. I began to feel pretty again. I decided that I would put in more time to fix myself. I bought a whole new wardrobe, worked out, went to the spa and salon regularly and am trying to  slow down aging (I finally used moisturizers and lotion at age 40!). 

I've always loved ballet but in my 40s
I discovered my love for boxing.
Because I started to feel comfortable with my appearance, I then had more confidence to socialize. My husband and I would go on weekend dates and I started to meet up with old friends occasionally. It also became easier for me to make new friends because I was no longer worried that they would think I was ugly or fat. In fact, it has now come to a point where I no longer care what people say about my appearance. I am happy with the way I look. Mine is the only opinion that matters now. 

When I was bigger, I shunned social events. Not anymore.
I actually look forward to getting out of the house and just
laughing (here with my sisters).

At 43, I became the happiest I had been in a while. I felt that I knew myself better and was empowered once again. I had a confidence that I never had before in my life and I felt that I finally knew who I was and what I wanted in life. 

Having a birthday mojito

Of course there were times when I’d feel guilty. At the start, I’d feel bad about the few hours I’d spend in the gym, spa or salon every week. Eventually, though, those times had become sacred rituals. They became my ME time. The family found it hard at first to adjust to Mama not being available all the time but they got used to it in the end. I think it was because they saw how happy I had become in the last few years. 

THAT was what I never realized before. By being selfless and putting everybody before me, I deprived them of the fulfillment of allowing me to be happy as well. Everyone became selfish and entitled because I allowed them. By asserting my right to happiness, my children have learned that, sometimes, even when they don’t get what they want (and mom does), they can be happy too because they see someone they love happy. 

Many joke that people who decide to makeover their lives in their 40s are going through a midlife crisis. Mine was not a crisis but a metamorphosis. I evolved. I left my shell. I was no longer just wife and mother, there was finally a self I unearthed from beneath the roles that I’ve portrayed all these years. The beauty of it all is that, though the changes cause me to take time away from family, our home has become better because I now value myself. Again, as I said before- by being a better person, I became a better mother (I don’t know about “wife,” you’ll have to ask my husband :) ).

My husband and I have discovered that we enjoy
traveling without the children sometimes. Long ago,
I would have considered us "selfish."

Life is not all peachy. We often make adjustments because it’s like there’s a new family member with her own schedule and needs. Sometimes old habits pop up. Sometimes I’m the one who feels entitled (and my husband has to keep me grounded). In the end, though, I have no regrets. There will always be challenges and conflicts. Unlike in the past, however, I am now strong enough to assert myself. Nowadays, the resolution to any problem will definitely take into account what is good for me too. 

From the extreme selfishness of my youth, to unhealthy selflessness of my early motherhood, I have now found balance. In my 40s I found my center. Now if only I can stop talking to myself in the mirror about my happy thoughts… :)

The crazy girl has found balance.

Saturday, May 10, 2014

New Beginnings

In August, Ton will be moving to a new school. After five years in regular schools, our parents' instincts tell us that it's time to look at other options for our son with autism. We have finally accepted that, though they are a more socially-acceptable choice for our family, regular schools are not the best environment for Ton.

For five years after Ton's diagnosis, he managed to cope with the demands of two regular schools. Preschool is generally easy for a high-functioning autistic child. Educational expectations are low. Social norms are still being learned by most children. And, let's face it, autistic or not, children are cute and can get by with just charm.

In his first regular preschool, every school day was highly-
structured and predictable. Ton was able to anticipate and

At seven years old, though, Ton was in a Montessori classroom with a very low percentage of high-functioning special children and was no longer coping. Academically, he could barely go through lessons because of his difficulty to regulate and to concentrate. His Dev. Ped. actually said that, aside from his autism, Ton's condition probably had the co-morbidity of Attention Deficit Hyperactivity Disorder (ADHD).

At the start of the school year, Ton easily finished
work like this. By November, he would start the work
and end up throwing the triangles into the air.
In terms of communication, he was still talking like a four year-old. He still could not converse with most adults, much less with other children. This caused a huge social gap with his classmates. Juan, a six-year old boy in his class was told by Teacher Leah once, “Juan, talk to Ton. I think he wants to play with you.” Juan just said, “but Teacher, when I talk to him he doesn't talk back.” So Juan stopped talking to Ton.

Ton would sometimes want to play with his classmates but
he didn't know how to tell them. When his classmates tried
to talk to him, he wouldn't respond; so they stopped trying.

Due to his language difficulties, also, Ton started to become physically aggressive in school. Out of the blue, he would push children with force. He would intentionally break items in the classroom to get attention. Then he began to hit his teachers and other children. First, softly but eventually the blows became strong enough for the adults to complain to me. (It broke my heart one day when a little girl in Ton's class said to me, “are you Ton's mom? Ton is always bad.”)

I worked with the teachers, his therapists, the Dev Ped and his natural medicine doctor to find remedies to the negative behaviors that Ton was exhibiting. The therapists and the Dev Ped were unanimous- the lack of structure in the Montessori classroom was not helping Ton regulate. The flexibility of his work schedules caused him to space out and stim (do repetitive behaviors). The lack of opportunities that “force” children to socialize (like group activities and structured PE games and activities, for example) was pushing Ton further into his own world.

And so, once again, we had to make a tough decision to pull Ton out of his Montessori school. It was the same school I (and all my siblings) studied in for preschool and grade school and the same school that my two neurotypical girls go to. So pulling Ton out would be breaking tradition. When I finally pulled him out, we lost the reservation fee for the next school year and Ton missed the last three weeks of classes. And when I said goodbye to Ton's excellent, extra-caring and hardworking (to the extent of deviating from the school's typical Montessori interpretation) teacher, Leah, there was so much sadness that we both cried.

With much sadness we say "goodbye and thank you" to
Teacher Leah, who worked so hard with Ton (and me) and
poured herself into helping Ton get better.

Ton's new school is primarily a special school, having been founded by a former learning specialist for one of the Philippines' top international schools. This specialist worked for years with special children in the Washington, D.C. public school system. This is why I was convinced that this was the next step for Ton after just one visit. There was so much special education experience among the faculty; but more than that, you could see and feel their passion for their work. I came out of my school visit with so much optimism for Ton.

We have to wait and see though. New beginnings are not always easy. They are exciting, full of hope and happiness. However, while these fresh starts seem to be full of promise, they are equally frightening. Our old ways, relationships, and lives were predictable and, sometimes, even bland. Day in and out we knew what to do, as if we were on cruise control. We could even predict the effects of certain precedents and avoid unpleasant outcomes. They may not have been exciting and ecstatic, but they were steady and (minus a few minor bumps here and there) smooth-sailing.

I could keep Ton in his old school and hope. I loved his teacher in Montessori. She was very cooperative and full of good intentions. I was very comfortable with the staff, from the head of school to the aides. My relationships with the key people in the school were so strong that I could come in anytime and request to observe Ton's class. I could give suggestions and tips that everyone can use to help him. My friends in the staff would even go out of their way to check up on Ton, make sure he was okay and progressing.

Ton could keep on going to a “regular school.” I would not be shy to tell people the name of the school because it is not known for its special education program (in fact, it does not have any). I would be assured daily that there are lots of substitute “mommies” in the school who would make sure that no harm falls on my baby boy. I could continue with the family tradition and wait for Ton to graduate from the old school.

I had wanted all my children to study in the same Montessori
school that I went to. (Here are the 3 little ones proudly
wearing their school hoodies.)

But I realize now, that unlike with relationships or old patterns that we cling on to so strongly, Ton doesn't have the luxury of time. He cannot spend another school year with us just hoping that this school would finally “work” for him. Yes, while his every day in Montessori had become “predictable,” what it really meant was- yes, today, he will hit his teacher again, refuse to work and break a glass/vase/bowl. That is what “predictable” meant during the last month he was in Montessori. It was obvious that it just was not working for our child.

So in June (for summer school), we will be venturing into the unknown, armed with excitement and new hopes that this new approach (the special school- something the experts have been telling me forever but I refused to follow) will be a more effective, and therefore lasting, way of life for Ton. I pray he will be happy in his new school and that, finally, we will be on a faster track of progress towards Ton's independence and, with much hope, college.

We're looking forward to a bright, beautiful future for Ton.

I commit to this decision now. As we start fresh we will bring with us learnings from the past. We will be smarter and not make the same mistakes. We will strive harder to make it work. And once we're convinced it is the right fit, we will hold on as long as it does us good and not let go. Hopefully this is the final new beginning that will lead us to our happy ending.

Here's to our final new beginning.

Thursday, March 27, 2014

Steps and Turns

It's amazing how some people knew as kids what they wanted to become as adults. I never had a clear picture for most of my life. First, I wanted to be a doctor; hence, my two years in BS Biology. Then, my parents said I should transfer to Food Technology ("because everybody needs to eat food!" my father said). I got that degree, but after four years of counting microorganisms, doing QA on food ingredients and products, and product development of various food items (such as meat-free hotdogs), I finally found my calling as a preschool teacher. I was 28 when I discovered my passion (though I was only able to spend three years as a teacher before having to leave for the US). 

Uyyy, it's Teacher Aya!

Just as crazy as the many years I spent finding my passion, Ton's autism journey has been full of shifts, lapses and setbacks. My son has just come out of his biggest regression ever. For two months he was speaking less and had uncontrollable aggression. It’s been two weeks since we finally learned to manage his behavior. With renewed vigilance, I have been in more regular contact with his therapists and have began to work again intensely with his natural medicine pediatrician, Dr. Girl Leones.

Admittedly, we allowed Ton to deviate markedly from his Gluten-Free, Casein-Free  (GFCF) diet. This dietary intervention is based on the belief that children with Autism Spectrum Disorder (ASD) are biologically unable to fully-digest gluten (wheat protein) and casein (dairy protein) like typical children. Because breakdown of gluten and casein are only partial, there are many by-products and toxins that are left in the body. Such by-products cause off-behaviors in children with autism. The holidays, our trips abroad and out-of-town, frequent restaurant visits, his visiting-from-New York Kuya Paolo and mere complacency on my part allowed Ton to enjoy fast food, wheat and dairy products and processed food. 

Deviations to his GFCF diet often cause
negative behavior changes

It had gotten so bad that even when we were bringing Ton to Dr. Girl one month ago, he was wildly kicking and hitting us (Yaya and I) as soon as we arrived at the lobby of the Medical Plaza, Makati. And then, when we arrived at the clinic, Ton climbed on top of the examination bed with shoes on. He grabbed things on the doctor’s desk. He was restless and had difficulty sitting still for his physical. When the evaluation was done, he ran to the waiting area to play with the toys. I was drained from restraining him at the lobby. But more than anything, I was devastated because he was more like the four-year old Ton than the calm, communicative six-year old that Dr. Girl first saw in June 2013.

Ton's first visit to Dr. Girl Leones in 2013
I knew that his poor diet was to blame but as Dr Girl looked through our regimen of supplements, she noticed deficiencies due to brand changes. I underestimated new dosages. Dr. Girl noticed that our magnesium dosage was greatly lacking. Magnesium is believed to have a calming effect on many ASD kids. She increased frequency of the Magnesium to twice a day. She also felt that because of poor GFCF compliance over the last few months, it was highly probable that Ton had yeast overgrowth. 

It is a strong belief among natural medicine doctors that increased wheat and sugar consumption causes proliferation of yeasts (fungi) in the body. Because Ton had been eating pizza, ice cream, cakes and juices, it was highly probable that yeasts were feasting on the sugars in Ton’s body. Dr. Girl immediately recommended a month-long round of a strong prescription anti-fungal, Diflucan.

Diflucan is initially given at half-dose for ten days to get the body adjusted to the strong effects of the anti-fungal. Die-off reactions occur with very strong anti-fungals. These reactions include increased hyperactivity, tantrums and stimming (repetitive behaviors like spinning and waving arms). In fact, with a strong anti-fungal, the child gets worse before he gets better. After ten days, the dosage is given twice a day for another 20 days. Diflucan is so strong that after our 30-day cycle, Ton will need to have a blood test done to determine whether his liver functions were affected by the strong drug.

We're already done with Diflucan. Still, we have to continue arresting the negative effects of yeast overgrowth. So, we will start on what Dr. Girl calls “the anti-fungal parade.” It is a sequence of rounds of different natural anti-fungals- caprylic acid, Saccharomyces boulardii, uva ursi, grapefruit seed extract and Candex (a combination of different natural enzymes). We will have two weeks each of these natural supplements, gradually ridding Ton of most of the fungi in his body.

Participants in the "anti-fungal parade"

This anti-fungal parade is done together with a series of probiotics. We have 4 different brands now- Dr. Ohira’s probiotics, Culturelle, PB8 and local brand Erceflora. The probiotics are given alternately, thrice a day. The goal is to promote growth of good bacteria that can keep levels of yeasts and bad bacteria under control.

Members of the probiotics group

Aside from the anti-fungals, Ton also ingests daily dosages of a special multivitamin (recommended for autism), Cod liver oil, Calcium, Magnesium, Zinc, GABA and Pycnogenol, He also needs to take digestive enzymes before each meal to help him break down his food better and to facilitate proper digestion and absorption of vitamins and minerals. 

All of these supplements/probiotics/anti-fungals are administered orally. They are either chewable or in capsule, liquid or gel form. The capsules are opened and the powders dissolved in liquids such as his morning green juice (with sayote, malunggay, celery, singkamas, kangkong, cilantro and green apple), evening red juice (sugar beets, carrots, garlic, celery, and red apple) or calamansi juice. 

Ingredients of Ton's green juice

Until recently, I never imagined that all my 24 units of chemistry, my degree in Food Technology and 2 years of pre-med would come in handy as a full-time mother. When Dr. Leones explains metabolic pathways, I'm grateful I took Chem 160 (Biochem). When she talks about yeasts and how they break down sugars to carbon dioxide and ethanol, I thank my food microbiology and food processing subjects. When she speaks of gluten and casein, the Food Tech in me remembers how gluten forms the matrix within the bread dough and how casein particles formed the cheese structure when we made white cheese out of milk through the action of rennet (an enzyme extracted from the stomach of some mammals). Eight years (2  years on leave) of a college education I never used for long were helping me understand biomedical intervention.

Me (middle) after 8 years of college, 2 courses, 2 campuses,
1 wedding and 1 baby later
What's more amazing than a child predicting his future profession? That what I once thought was wasted time (by shifting from BS Bio to Food Tech) or wasted knowledge (from Bio subjects I didn't need for my Food Tech degree) or even a wasted degree (because as a preschool teacher, I did not have use for a Food Tech degree), would all one day fall into place and prove precious in making me a better mother. I realize now that all the steps I took and the turns I made in college were all part of a plan (I used to be unaware of) and not decisions to regret. Funny how they all ended up being useful to me eventually. Even back in college, without my knowing it, I was already being prepared for our autism journey. 

Things really did happen for a reason, a very special reason- TON.

I had to live through my crazy college years so that I can
help you live through these tough years.

Monday, March 17, 2014

Young love

My 11-year old daughter Gabby has a crush. I remember my 6th grade crush now. How he said he liked me but that he will consult with fortune tellers first to find out if we were compatible. Imagine that! I was heartbroken because the fortune tellers said I was not his destiny. Of course I moved on (or did I? :) ) and had many other crushes after 1982 but now that Gabby talks about her crush, I feel and share her happiness and giddiness. I see her eyes sparkle. I welcome the latest news about him.

Me, 6th grade (1982)
Gabby, 6th grade (now)

I pray that I will have conversations like that with Ton, too, one day. I want him to talk to us about how to ask a girl out to the prom, how to behave in front of her parents. I want his eyes to sparkle. I want him to fall in love and marry. It’s a long shot, for now, but I want to believe that he will break out of his shell finally and experience the highs and lows of love, the successes and disappointments of life. 

Let me run through the major barriers we have to overcome before we get to marriage. (Mothers always over-think things, don’t they?)
  1. He has to learn to control his emotions and self-regulate.
  2. He has to learn the rules of conversation. How to listen, when to talk.
  3. He has to be able to read body language and facial expressions.
  4. He will have to develop Theory of Mind. "Theory of mind (often abbreviated "ToM") is the ability to attribute mental states- beliefs, intents, desires, pretending, knowledge, etc.- to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own." (Wikipedia)
  5. He will need to go through school at a steady pace and eventually receive enough education that will allow him to hold a job and be productive.  
     I’m sure there are many more steps. 

I don’t worry about looks. My son is handsome and charming (when he wants to be). Meeting a girl? She’ll be smitten as long as he is well-mannered and respectful. I won’t worry about fortune tellers because my son is himself a mystery. I’m sure, though, that he is destined for greatness. In what way or form, I don’t know. As he is now, he has already been a blessing to us. And our lives are much greater because of him. But when Ton finally has a crush or girlfriend, it will be a big deal to me.

C'mon! What's there to not love?!

When my 22-year old son, Paolo, first had a girlfriend it was uneventful. Having grown up in California, Paolo introduced her to me only after bumping into her during his graduation. I had to restrain myself from feeling giddy for Paolo because he said it was not very serious yet. In a few months, it was over and I did not have the chance to see his eyes sparkle with love. It probably didn’t even get that far.

I am thankful that Gabby thinks that I am an acceptable audience for her “kilig” stories. It’s what moms are supposed to do- hopefully until adulthood (though I doubt it). So I cherish these moments now. I never told my mom about my 1982 crush. She only heard about him in my 40s when I was no longer scared that she would get mad because I liked a boy. Gabby’s candidness about boys and crushes are welcome anytime, even when she’s 40.

In 12 years we will know if Ton will go to the prom; if he will be nervous about meeting her parents or if he will ask Dad for relationship advice. For now we will work harder; because there is a new objective for all this hard work. Whereas 5 years ago, the goal was for Ton to talk and be potty-trained, today it has become this- to prepare Ton to live a full, enriching life (love or no love). And though this is a goal we wish for all our kids, it holds a deeper, more special meaning for Ton. It means he overcame the “impossible” and has triumphed over his condition. His potential is no longer bound by the restrictions of autism or impressions of society. He won.

I want to see your eyes sparkle and to see you in love.

I don’t believe in fortune tellers but I believe in destiny. And I believe that in 12 years I will be too busy ironing his suit and buying a corsage for his date that I won’t even have time to give you an update. In the meantime...

Believe with me.

Tuesday, March 11, 2014