Monday, October 25, 2010

Black, White and Gray

When is faith "denial?"

I had to face this thought recently when I started talking with other ASD moms who seemed to be doing a whole lot more for their children than I was. From biomedical intervention, B12 shots, Gluten-free Casein-Free (GFCF) diets, Auditory Integration Therapy (AIT) and specialized mainstreaming schools, I got to thinking, "am I still not doing enough?"

I told one of these moms, Josie, that talking with moms like her makes me feel so insecure. Because I am not doing as much as they are, maybe I love my son less? It's easy to get depressed when facing autism and thoughts like this are not uncommon. But I have to consciously stop the self-pitying and focus on Anton. Sometimes it hurts my pride but I have to digest these moms' messages and reassess Anton's interventions.

And this is where it gets tough. Lately, Allen and I have accepted Anton's steady progress. We bask in each milestone achieved and we feel that the one year delay is acceptable. We also strongly believe that he is slowly overcoming the challenges that ASD brings his way. I, on my part, have developed this faith that with all the things that we do, and with God's help, Anton will get better.


















We have learned to accept the quirks of our Little Einstein.

On the one hand, I understand all these well-meaning moms who merely want to share what successes they have achieved using these alternative therapies. I am not closing my doors on these suggestions. I merely feel that I would like to give Anton a share in his improvement. When they say that, without AIT, GFCF, Biomed, my child would not have improved, I would like to think that the improvement came from the child. That these interventions are incidental. They may help greatly, but I do not want to take away from the child what is rightfully due him.

So, rather than dismissing the advice outright, I have learned to accept the wisdom they have gained through the years. Maybe I am a newbie, naive and optimistic, but I still refuse to accept that Anton will not overcome this. Call it "denial," shake your head in disbelief, criticize me for allowing Anton an occasional doughnut. Each child is different, each autism is different, and the families surrounding them are unique.


















Pizza is a no-no in the GFCF diet.

I am studying these other options well. I have been gradually introducing my son to GFCF (not fast enough, I'm sure some will say). What I do not like is when this discussion becomes like the battle between Democrats and Republicans (both sides thinking the other is wrong). To me, this is not black and white, either you're on this side or not. I am allowing Anton and myself to stay in the gray for a while. Though I know that we can't stay here long.

We have to do as much as we can now. But I am not going to allow my son and family to blindly heed advice. There are some things that work for us, and some that do not. Besides, our decisions are never final anyway.

Like the changing face of autism, Anton's needs change as well. It is inevitable that his family does too. Whether we plunge into AIT, biomed or GFCF will be a decision we carefully make as a family. It will not be simply because it worked for others.

Even before Anton's autism we have always been too gray (weird) for other families anyway. We count on faith, hard work and each other to help Anton get better. Maybe it is denial; but we are his family and we know him best.

Friday, October 22, 2010

First Experiences

After my eldest daughter, Abby (typical, and 8 years old), was traumatized by the sound of drums playing during a Hawaiian Luau when she was 3, I have always been cautious of occasions where there would be loud music. After the luau, she would freak out at parades, fireworks displays, even classical music played at home. I knew then that, typical or not, first experiences are very powerful for children.


Abby's traumatic luau experience

So when Anton's school decided to bring their students to watch Repertory Philippines' Sleeping Beauty, my first impulse was to say NO. At P750 per head (including chartered bus fare), I was not inclined to pay for Anton and myself just so he can freak out in a theater. Besides, I was pretty confident that he would not enjoy Sleeping Beauty. He barely enjoys Barney, what more singing actors in a dark theater.

Then I thought back to Anton's first conscious Museo Pambata experience. Anton had been to Museo two or three times before that trip (way before the diagnosis), and he has enjoyed all of those other times. So it was a shock to hear from my mom that, when I was in the US and she was taking the kids around, Anton cried when they tried to enter Museo. He refused to go in and so they all decided not to force him. That became his "first experience" of Museo Pambata. After that, to him, Museo was a scary place.

I scolded my yayas after hearing about that trip to Museo. I was angry that the trip ended negatively. I felt that, had I been there, I would have "forced" him to enter and brought him straight to his favorite area- the marketplace. Hopefully, then, he would remember that he had been there before and would no longer be afraid. In the end, it would have left a positive impression on him.

I submitted the reply slip at the very last minute. I deliberated in my head; I deliberated with my husband. Allen said, "no na. It's just a waste of money." (It really wouldn't be Allen if money talk was not involved.) I agreed with him but changed my mind on the day of the deadline. I said to my husband, "if we don't let him experience going to a theater now, he will not be ready for the Christmas program. I have to bring him and show him that the theater is a positive experience." I was showing more optimism than I actually felt, however.

I forced myself to ignore the cost of this experiment- P1500. Then I decided on the goal I wanted to attain- for Anton to come out of the experience unafraid of theaters.

I spoke to Anton's teacher and gave my requests- that he be allowed to sit with me in the bus and theater; that we will sit closest to the aisle in case we needed to make a speedy exit; and that we will allow Anton to verbally request any discomforts or need to leave. She agreed but said, "wouldn't it be a waste of money if you don't finish the play?" To which I said, "but that is not the goal. The goal is for Anton to come out of it not scared of theaters." She thought I was a bit cuckoo but agreed to go along with my plan.

The day of the field trip came. We were to watch the play at 10:30 am. We tried to arrive in school late to minimize our waiting time but we were still one hour early. We arrived at school and immediately sensed Anton's discomfort Anton was behaving differently because I was present and because the routine had changed. I pointed to the bus and said, "Mama and Anton ride the bus. Watch show." To which he said, "I want bus" many many times during that one hour.


the happiest part of the field trip- riding the bus

When we finally got to board the bus, Anton was so happy. It was his first time to ride a bus and he kept singing, "The Wheels on the Bus" as we drove away from school. The trip to Greenbelt took longer than I thought so Anton passed the time staring out the window, singing, and eating half of all his baon. When we finally got to Greenbelt, he said, "I want bus" when I told him we had to go down. I carried him in my arms anyway and we went into the mall. We took the stairs going up and, unfortunately, had to wait a good 30 minutes before we were allowed in. Because we were last to enter, the lights had already been turned off as we took our aisle seats.


Anton, leftmost, and classmates waiting to enter the theater

I watched Anton while the music played and curtains opened. He was a little tense and said, "carry" so I put him on my lap. After he endured the falsetto singing of the fairies, I grew optimistic. Then our turning point came. "tan-ta-nanan!" Then a loud male voice, "the king and queen!" It was then that he said, "I want bus." I said, "do you want to watch show?" To which he replied with a clear and crisp, "no." I said, "wait, I will get the bag" and pretended to have difficulty doing so. I tried to slow down and test his limits in case he would end up enjoying the play eventually.

After two minutes he, once again, said, "I want bus. Let's go bus." This time I said, "okay, let's go to the bus." Again I took the longest time to reach for the bags but after less than a minute, he once again blurted, "let's go bus," with more desparation and urgency. At this point, after he tried thrice to make his request, I complied. I realized that he was making a conscious effort to communicate his needs with me and if I ignore him, he would feel that his talking was not effective at all. Also, I've seen Anton beg and beg, and me- ignore and ignore, and the result was really disastrous- a full-blown, flailing, lying-on-the floor tantrum right in the middle of a mall. I learned from my lesson so I carried Anton and exited the theater.

We found a bench outside, where they were selling posters, CDs and other kid-traps. He ignored all of these and sat down and stared into space. For him, this was heaven and what he came from (the dark theater with loud music and voices) was torture. He was content to do nothing but I offered him some crackers and his IPod. He suddenly became animated again and he was much happier than when he was watching the play.

I started thinking, "15 minutes. We were there 15 minutes. P1500 for 15 minutes." I was neither sad nor angry; just feeling a bit disappointed about how much money I wasted. I watched Anton eat and drink and walk around the theater lobby. I thought of an opportune time to bring him back inside but whenever I would ask him, "do you want to watch show?" he would always reply with a no. So we sat in the lobby for 30 minutes more. Suddenly people started exiting the theater. It was time for the intermission.

I seized the opportunity to make the most of his first theater experience. I carried him into the theater. We walked along the sides of the theater, where a wall separated the aisle and the seats. Nothing was visible yet to him but he resisted walking further. He kept saying, "I want bus. I want bus." But I was firm because I had a goal in mind- to make his first theater experience a positive one. If we went home after the king and queen came out, the 1500 would have really been a waste. But the intermission was the best time to recoup the losses. He had to go back into the theater and be happy coming out.

He held on to the wall of the side aisle tightly but we inched forward until we had a good view of all the theater seats from the stage. He took a good look around- the lights were on again; it was quiet; and the metallic royalty was gone; the curtains were drawn. He stopped resisting as I led him to a vacant front row seat. He quietly sat down along with his other schoolmates. Anton's teacher came looking for me and said, " are you okay? Is he okay?" and I said, "he's okay now."

Five minutes passed and I knew the second half of the play would begin soon. I asked him if he wanted to go and he said no. In the well-lit, quiet, metallic-free theater he was finally happy. A few more minutes passed with him quietly looking around the theater. When the beeping warning came, I knew it was time to go. I asked Anton to say goodbye to his teachers and then I said, "let's go home. Ride the car. Go to Ate Abby." Without any resistance he asked me to carry him as we stepped out of the theater.

We headed to the car both happy. Anton was glad he rode the bus. He also seemed happy to have sat in the theater with his classmates . I was happier, I think. No longer was the P1500 put to waste. (I know my husband would disagree but) The P1500 was worth the 25 minutes total we were in the theater. I could care less if he wasn't able to follow the story, or see the costumes, or hear the nice songs. All that mattered to me was that I achieved my goal. All that mattered was that Anton will probably not be as scared to enter a theater anymore. Sitting through a whole play is another story but, like I said, "small victories."

And- just to erase his bad first experience, we took a trip to Museo Pambata last week. As we walked towards the entrance, he said, "go home" but I carried him inside. We breezed through the first floor (he did not like any of the exhibits) and took a quick elevator ride to the second floor. I carried him into an area where there was a giant tractor on display. He sat down and suddenly felt more comfortable. He began singing "wheels on the bus" as he moved the steering wheel left to right, and vice versa. I then led him to another room with an exhibit of professions; obviously not very interesting for him. He clung to me tightly through that room and even through the museum store (which was a surprise).


enjoying the Museo truck with Issa

Soon he saw the Museo marketplace. His face lit up when he saw all the plastic fruits and vegetables on display. He started grabbing them and placed them in a basket. This was when I knew that I had erased his first bad Museo experience. He stayed there for thirty minutes but I decided to give the other exhibits another try. I led him back to the tractor and, not only did he play in the tractor, he also played with the other exhibits- the pulleys, the mirror, the bicycle. Then he said, "I want fruits." So we walked backed to the marketplace. This time he explored the other "stores"- the bakery, the fish stall, the carinderia, even the bahay kubo.


finally, he found "heaven" at Museo

After an hour inside Museo, bus-loads of kids started pouring in. Soon, the place would be unbearably noisy and rowdy kids might end up unintentionally hurting him. That would definitely ruin his mood. I had to invite him to head back to the car and I said, "let's go to the car." This time, when he said, "I want fruits" I knew my Museo experience was successful; yet another small victory.

I really do not want to make it seem that Anton's other caregivers are incapable of bringing a successful first experience. I just think that, maybe, because I am his mother and because I am more sensitive to his cues, I am better able to engineer "first experience" situations and adapt to his verbal and non-verbal cues and attempts at communication.

I also believe that by knowing my goals prior to a "first experience" I am more realistic about expectations and am better able to focus on the positives of any endeavor. Most importantly, unlike anyone else in Anton's circle, I am the expert in small victories. And, unlike anyone else, I am the happiest.

Sunday, October 3, 2010

The Dance of Autism

In one year, Anton made strides in most developmental domains. His improvement was so phenomenal, we assumed it would go on forever. But it did not.

One month after the first anniversary of his diagnosis, Anton regressed. All of a sudden, he seemed like the same boy who was evaluated at the dev. ped.'s office a year ago. He was barely talking. He was once again getting his message across through tantrums, screams and whining. He also began to resist routines he used to take on effortlessly. Eating time used to go on with little resistance but all of a sudden, Anton was rejecting (through screaming) even his most favorite foods. What really bothered me and made me worry again was that he stopped responding when his name was called. He had also resumed his old mannerism of looking at objects using peripheral vision. I knew then that I had to get back to work again.

With autism, it seems like you go through phases like this- as they say, "2 steps forward, one step back.". I panicked at the thought that my son was regressing. Then I stopped myself again; very much like i did when he was first diagnosed. I looked at Anton during a quiet moment and thought, what am I complaining about? Here he is going home from school with 2 stamps, potty trained and communicating his needs. We were not just 2 steps forward, we were 12 steps forward! If I had to deal with 3, 5, even 7 steps back, I would gladly take those anytime.


There are good days...


...and there are bad days.

It's been like this since we started living with autism. We celebrate victories and tackle obstacles. Anton's teacher said to me yesterday on the bus going to the school's field trip (Repertory Philippine's Sleeping Beauty), "if he falls asleep in the bus, he will not get to watch the play!" To which I said, "that's good- he will survive two hours of theater, asleep lang nga." She looked at me thinking I was joking, then I caught her by surprise when I said, "small victories, small victories." She nodded her head and tried to understand.

One night after an awful tantrum at bedtime, I told my husband, "he's smart, you know. He's learning to manipulate us." We both laughed because even that was an achievement in itself. Anton was almost four and therefore he was expected to play these games. I started to think, if he was a typical 4 year old, wouldn't he beg and whine to stay up 'til late? Of course he wouldn't scream 'til his throat hurts (because he would be able to reason verbally) but the message would be the same.

So, when he approached the dining table and saw the sinigang on the table, he tried to turn back but I pulled him toward the table. I made him look at the food and then I said, "do you want sinigang?" He stared at the food, took 3 seconds longer than a typical child to answer then he said, "No." "Do you want chicken wings ?" (Wings were a sure favorite.) And just as fast as a typical child would respond, he said, "yes," and sat down in anticipation. I said, "bye-bye, sinigang," and so did he.

If this happened last week, I would have forced the sinigang, we would be in a contest over who wins, and then there would be a stalemate. Not this week. I realized just a few days ago that part of the developmental expectations for a four-year old (aside from trying to manipulate) would be making choices and expressing preferences. For a long time, I was under the impression that he "had to" eat what was on the table. I now know, that like a typical 4-year old, he will like some foods and hate others- and he will make it known.


He used to love these GFCF pancakes. Now, he won't even go near them.

So, rather than fighting over who wins the food game, I let him take control. I realized that behavior management is not a contest- I don't have to win. And maybe, by allowing him to take control, he will trust me more and trust the power of communication, as well. This encourages him to talk more, and reason out. Now if I can only get the yayas to learn the technique.

These last few weeks have been really tough on both Anton and me. For Anton, when the walls were pushed back, when the limits were relaxed, he was at a loss once again. He had gotten used to the structure and the expectations from before that when the grownups started being complacent, the best way he knew to cope was to regress to his pre-intervention state.

As for me, things with Anton had been getting so bad that, instead of addressing the problems, I pushed him further to misbehave. I was so caught up in the "why is he regressing?" that I didn't see that his "negative behaviors" were actually brought about by age-appropriate impulses. I was so obsessed with the autism that I failed to see how my son was growing up in a very typical way.

One step forward, two steps back? Twelve steps forward, 4 steps back? What I realized is that it really doesn't matter. It could be any dance- the cha-cha, foxtrot, "Roger Rabbit," even the Metallic Gigolo. You really don't have to know the steps. You just have to go with the flow.




My son has the moves! He takes after Mom. (Or is it Dad? He did the coconut dance in high school, too, you know.)