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

Seminar on Inclusive Education

I was invited to this. Maybe others are interested to attend this too.


Fear

I used to think that strength meant the absence of fear. I thought I was weak because I hated airplane rides or roller coasters. I refuse to ride in the same flight with my husband (without the children) for fear of leaving the kids (specially Ton) without parents. I am afraid of getting caught in traffic while under the EDSA- Ayala/Pasay Road underpass. And since I lost my 60 pounds, I’ve feared gaining the weight back. 

As I stepped onto my stepper last week after almost three weeks without exercise, I realized this- though it is true that fear immobilizes many and causes inaction, harnessing this same fear also allows one to arm herself with weapons to fight it. Take my fear of weight gain. 

For a whole decade I was overweight, even obese. But since losing 60 pounds two years ago, I’ve managed to stick within my ideal weight range. My secret? The fear of becoming fat again. I refuse to go back to that slow-moving, sickly, unhappy 200-pound person. But, unlike most dieters, I am not harsh on myself. I indulge and give in to my cravings; sometimes because the moment calls for it (like family gatherings), other times because eating gives me short-term happiness.

The fear of fat keeps me fit.

Often, over the holidays or when family comes from abroad to visit, it is not uncommon for me to gain a few pounds. Once I see, though, that I’m nearing a ten-pound weight gain I start freaking out. 10 is when I get scared of becoming obese again. And, unlike many rebound dieters who allow the weight to slowly creep back, for me it is at this point where the fear drives me to arrest the downward spiral. I take action- eat healthier, exercise more intensely and regularly. Pretty soon, I lose the 10 pounds and I’m back at my happy state. 

When Ton’s hitting/kicking episodes escalated two weeks ago, I entered a dark phase of my life once again. My depression was intense. I was almost ready to give up. I felt like this a few times before in this autism journey but this time was different. I had a new realization that hurt deeply- Ton was special and would live his lifetime with major regressions. I once again feared for the future of my baby boy. Was he going to be forever a nuisance to society because of his aggression? I also felt the most helpless and hopeless in our five years of battling autism.

Ton regressed due to a number of factors including frequent
deviations from his GFCF diet over the holidays.

Once again, like during Ton’s diagnosis, I grieved. I mourned for the lost opportunities that typical children would have that Ton would not experience. I mourned for the diminishing possibility of Ton going to a regular high school or of him having a meaningful job. I had to painfully accept that Ton would need special assistance and guidance from his family throughout his life and that he will never really be like other kids his age. I also resigned myself to the fact that Ton would finally have to enter a special school because there was no longer any denying that most regular schools would not be good for him.

The holidays were fun because the family was complete but
it also meant more activity (less predictability of schedules)
and increased sensory stimulation for Ton.

I cried for weeks. I lost sleep but made up for it with lengthy naps throughout the day. I refused to socialize, leave the house. I pigged out almost every day. I was immobilized by my fear of a bleak future for Ton. Then one Monday I said to myself I would work out and diet again. That alone was a big step that allowed me to rebound from my depression. And while I was on the stepper, my mind began to work again- I would inquire with a new special school. I would talk to Ton’s teacher. I would accompany Ton to his therapy visits. I would read and research again. I will fight again.

I get many of my best ideas (for writing, scheduling, for life)
while working out. Added bonus- I feel happier after the
torture!

Last week, I slowly stepped out of the darkness of my depression and with it, Ton slowly stepped out of his hitting/kicking phase too. Because of my fear of the worst, I forced myself to work harder to help him and, by doing so, I brought Ton (almost) back to where he was two months ago. He’s not 100% there yet but he’s getting there slowly everyday. We’ve actually had no-hitting days lately and he’s been more compliant and communicative again. 

Our last period of regression was the toughest ever but I am
relieved that Ton has almost recovered from it and that he
is getting better again.

Like Ton, I’m still not at my ideal state. I haven’t lost my holiday-10 (pounds) but I’m getting there because I have been acting against my fear of obesity. And like in the past, I know it is possible as long as I work hard. 

People keep saying that we should “fear nothing but fear itself;” that fear makes us weak. I know now, that though my fears immobilize me temporarily, it is because I am afraid that my fears will come true that I force myself to act. The “fear of fear” is what makes me stronger. 

It really is interesting how Ton’s autism has brought out the best in me. I am surprised at what I have evolved into because of the many trials we've been through together. It’s refreshing that nowadays being depressed doesn’t make me want to die but to live longer so I can help Ton. I am smarter, stronger and healthier because of him.

In the end, this really wasn't meant to be just Ton’s journey but mine too. :)