A few weeks ago I was in the United States, the place where the CDC (Centers for Disease Control) says that autism affects 1 in 100 children. But whenever I looked around to search for others like Anton, I was left with a feeling of sadness. It seemed like there are no other kids like him in public.
Why did I need to see other families struggling with autism? Because, selfishly, it would make me feel better. I would know that I wasn't alone. I could compare my child with theirs and feel better that Anton is doing better. It was mean, yes, but I also needed that to strengthen my hope in recovery.
Then, one day it happened. I was sitting in Chuck E. Cheese's (an arcade-style play center) and saw a family walk in at around 8pm. Their 12-year old (or so) son had that classic autism gait- shoulders hunched, walking on demi-tiptoe. His face showed signs of mental retardation and he seemed to be mumbling as he walked. He was also carrying a rubber fish toy. It seemed like a classic case of autism.
Then I looked at his parents; so young yet so tired-looking. The mother had dark circles under her eyes and the father had that kind, patient look about him. They guided the boy to what seemed like his favorite game. It was a football game where you become like a quarterback and aim the football through the holes on the backdrop.
I watched the family play. The child did not hold the football at all. He seemed to derive immense joy from watching his father play. It seemed as if they intentionally came to the place late on a weekend night (when it was less crowded and busy) to play this football game.
Watching the boy made me very sad. It was then that I wished I did not see another child with autism. When I saw this family, I began to feel the parents' pain. I also hurt inside. I thought, "never mind, I will just believe the statistics."
Then I watched him again, this time with his father. His dad was playing an arcade game while he watched. Then he tried to block his dad from the screen so that the man lost his game. The man tickled the boy and they both laughed. Like my family, theirs was not all sadness and stress. There are happy moments, too; those that take the burden out of the daily grind; those that make things "worth it."
A few days later, I was out again at a huge public aquarium. In the children's play area, I saw another boy who struck me as "different." It was past noon but he was still in his pajamas; and he was clutching a worn-out stuffed bear. His mother looked tired, as well. This pair, however, didn't seem to be taking things as lightly as the other day's family. Mom seemed to have walls around the boy, protecting him fiercely and making sure that he was given a turn in one play area.
I looked at her and smiled. She looked at me blankly and then looked away. I realized I was not going to be friends with this mom. She seemed so drawn into the disorder to care about others, or herself. I hoped, then, that I did not seem the same way to others.
Yesterday, I proved I was not. Back in the Philippines, I went to Legaspi market, doing my usual vegetable juice shopping when I saw a familiar face, Amy. She was an acquaintance, and only recently did I find out that her own 6-year old daughter had autism. She looked back at me so I approached her. Without words, we hugged. Just like that.
I like being in Manila while this is all happening to our family. I have met many other moms who so easily share their stories and ask for advice. Amy was right. When two moms find out that both their kids have autism it is automatic- they are suddenly sisters. While standing in the market amidst the natural yogurt and siopao, Amy shared a condensed version of her life. But it was enough, her kindness (and her husband's kindness) was enough to make me believe that she is no longer just Amy, my sister's friend.
And, unlike the antagonism that I felt in the US, I looked at Amy's daughter, Patty, and did not want to compare. I wanted Patty and Anton to get better, no matter whose autism is "milder." Patty kissed me when her mom prodded her, the same way Anton kisses strangers. And, unlike that selfish feeling I had in the US, it seemed like Amy and I had become family. Our shared experiences and challenges (and maybe the openness and willingness to admit that autism is difficult) made us comrades against one enemy.
Forget statistics, forget comparisons, forget autism in America. My autism is real, Amy's autism is real. Because of my new "sister" and other sisters I have met and will still meet, I once again learn something new about autism. In mothers' efforts to help their children become better, we become better people as well. We learn to reach out, we are eager to help. We look beyond what we can take and instead try our best to give.
Autism has not dried up our hearts. Because we keep giving- to our children and to others, we keep growing.
(Thanks, Amy. I know you're reading this.)
Tuesday, July 27, 2010
Saturday, July 17, 2010
The Cost of Autism
I have sat through many conferences and seminars on autism. In one such event early this year, a woman was giving a testimony on how Auditory Integration Therapy (AIT) brought wonders to her son with autism.
She said, "it is a bit expensive, but I am willing to try anything, spend money on anything because if I don't, I will never know whether it is effective or not for my son. After all, if it means that he will get better, pera lang yan (it's just money)."
I sat there stunned but commiserating with her. I would do anything, give up anything, spend anything for Anton's recovery. Then as I was about to sign up for AIT, I stopped myself. I was not thinking clearly. I was swept by the tide of hope that this woman had brought to the room. I knew her personally from another place and I believed she was telling the truth. But I realized, "my son is 3, hers is 7. I will do AIT after I have exhausted (and failed in) all other traditional means."
I bought an autism journal, "A Day at a Time" from Fully Booked. In it I listed recent therapies and supplements Anton has used. I also used the journal help with toilet-training.
By listing down what it was we were currently doing, I was able to see where we were still lacking. I had speech therapy twice a week so I decided to increase frequency to three times a week. I felt that better communication skills would help Anton in other problem areas as well.
Upon the dev. ped.'s recommendation, he now has SPED (Special Education) tutorials once a week. This was important, she said, to ensure that Anton is coping and absorbing concepts taught in his regular preschool.
We continued occupational therapy (OT) sessions twice a week, focusing on behavior modification and sensory integration. I also actively scheduled trips to new places like restaurants and malls in order to desensitize him to new environments. As for me, I began recipe-testing of Gluten-Free, Casein-Free (GFCF) dishes.
All in all, our schedule looked like this:
An ASD mom I recently met asked me in a (sort of) demeaning tone, "isn't that too much? Won't he be stressed?" I said to myself, "I have until age 6 to make a dent. When he's 7 he can slow down; but not now when it is most critical and most effective.
Just today, I watched Anton while waiting at the therapy center. He went to the SPED room at 12 noon, then after an hour stepped out and went into the OT room. After OT at 2pm, he went to the Speech Therapy room. I watched him "swing" from teacher to teacher, looking for signs of stress in his face. I knew he was tired (and maybe hungry) but right before his 2pm "speech" session, he was in the hallway saying "sunflower, sunflower" while smiling. I knew then that he would make it 'til the end. And he did.
My husband always scoffs when I say, "pera lang yan." At P 14,000 a month on therapies, it is not small change we are spending to help Anton get better. But one look at him now and we can see how all the time and money invested in Anton has paid off. We are in a good place and making steady progress.
During a visit to the dev. ped. last week the doctor said that kids with ASD who are diagnosed early have specific milestones that they have to meet by age 5. In panic, I asked, "so is that the deadline, 5 years old?" The doctor looked at me, smiling, and said, "what are you talking about? Anton has already met the 5 year old milestones... he will be okay."
My heart leaped and tears filled my eyes. No matter what my husband or anyone says, pera lang yan.
Watch out, world!
She said, "it is a bit expensive, but I am willing to try anything, spend money on anything because if I don't, I will never know whether it is effective or not for my son. After all, if it means that he will get better, pera lang yan (it's just money)."
I sat there stunned but commiserating with her. I would do anything, give up anything, spend anything for Anton's recovery. Then as I was about to sign up for AIT, I stopped myself. I was not thinking clearly. I was swept by the tide of hope that this woman had brought to the room. I knew her personally from another place and I believed she was telling the truth. But I realized, "my son is 3, hers is 7. I will do AIT after I have exhausted (and failed in) all other traditional means."
I bought an autism journal, "A Day at a Time" from Fully Booked. In it I listed recent therapies and supplements Anton has used. I also used the journal help with toilet-training.
By listing down what it was we were currently doing, I was able to see where we were still lacking. I had speech therapy twice a week so I decided to increase frequency to three times a week. I felt that better communication skills would help Anton in other problem areas as well.
Upon the dev. ped.'s recommendation, he now has SPED (Special Education) tutorials once a week. This was important, she said, to ensure that Anton is coping and absorbing concepts taught in his regular preschool.
We continued occupational therapy (OT) sessions twice a week, focusing on behavior modification and sensory integration. I also actively scheduled trips to new places like restaurants and malls in order to desensitize him to new environments. As for me, I began recipe-testing of Gluten-Free, Casein-Free (GFCF) dishes.
All in all, our schedule looked like this:
An ASD mom I recently met asked me in a (sort of) demeaning tone, "isn't that too much? Won't he be stressed?" I said to myself, "I have until age 6 to make a dent. When he's 7 he can slow down; but not now when it is most critical and most effective.
Just today, I watched Anton while waiting at the therapy center. He went to the SPED room at 12 noon, then after an hour stepped out and went into the OT room. After OT at 2pm, he went to the Speech Therapy room. I watched him "swing" from teacher to teacher, looking for signs of stress in his face. I knew he was tired (and maybe hungry) but right before his 2pm "speech" session, he was in the hallway saying "sunflower, sunflower" while smiling. I knew then that he would make it 'til the end. And he did.
My husband always scoffs when I say, "pera lang yan." At P 14,000 a month on therapies, it is not small change we are spending to help Anton get better. But one look at him now and we can see how all the time and money invested in Anton has paid off. We are in a good place and making steady progress.
During a visit to the dev. ped. last week the doctor said that kids with ASD who are diagnosed early have specific milestones that they have to meet by age 5. In panic, I asked, "so is that the deadline, 5 years old?" The doctor looked at me, smiling, and said, "what are you talking about? Anton has already met the 5 year old milestones... he will be okay."
My heart leaped and tears filled my eyes. No matter what my husband or anyone says, pera lang yan.
Watch out, world!
Sunday, July 4, 2010
Life
I used to think my life was worthless. In my darkest days, I would cry out to God "I'm tired, please take me." I waited and waited but he didn't. Life got better and easier eventually but once in a while I would fall into the depths of depression. I realized, just now, after I asked God to please grant my wish (for myself), that I didn't want that wish granted after all.
with my first child, Polo, 1992
Anton's autism changed everything for me. Once upon a time, long ago, the birth of Polo (my eldest son) rescued me from depression and gave me a reason to live. He was my "hero" as I would say in the 90s. Then came Anton. Who would have thought that something so negative as his autism would stir up in me a reason to live? Nowadays, the prayer is "never mind me, just help him get better."
And so, as I selfishly asked for my wish, I cried some more and said, "no God, I take that back. (And as usual) Never mind me, just him." Then I looked at my sleeping baby boy and realized that he has become my new hero.
We are facing this tough challenge for many more years to come. And, unlike in my youth when all I wanted was to die, I know now that (even in my darkest days) I cannot die. I have to live because of Anton. I have to live because I need to help him get better. I have to live because only a mother will know what is best for her child and if I died I'm not sure anyone would do a better job than (or even just as good as) me.
My life is no longer worthless. I am alive now because I was needed for a higher purpose than just to serve myself. Like all the other lessons I've learned on this journey, I hang on to another- my life is not mine. I am here because my children need me, specially Anton.
Buti na lang, God didn't listen to my wish long ago. :)
with my first child, Polo, 1992
Anton's autism changed everything for me. Once upon a time, long ago, the birth of Polo (my eldest son) rescued me from depression and gave me a reason to live. He was my "hero" as I would say in the 90s. Then came Anton. Who would have thought that something so negative as his autism would stir up in me a reason to live? Nowadays, the prayer is "never mind me, just help him get better."
And so, as I selfishly asked for my wish, I cried some more and said, "no God, I take that back. (And as usual) Never mind me, just him." Then I looked at my sleeping baby boy and realized that he has become my new hero.
We are facing this tough challenge for many more years to come. And, unlike in my youth when all I wanted was to die, I know now that (even in my darkest days) I cannot die. I have to live because of Anton. I have to live because I need to help him get better. I have to live because only a mother will know what is best for her child and if I died I'm not sure anyone would do a better job than (or even just as good as) me.
My life is no longer worthless. I am alive now because I was needed for a higher purpose than just to serve myself. Like all the other lessons I've learned on this journey, I hang on to another- my life is not mine. I am here because my children need me, specially Anton.
Buti na lang, God didn't listen to my wish long ago. :)
Saturday, July 3, 2010
Siblings
During my grieving stage, I was so engrossed in the pain I was feeling that I neglected to see how autism was affecting my other children. Anton is younger brother to Polo, 17 years old during diagnosis, and Abby, 7 (at that time). He is also kuya to Issa, who was 1 last year.
My four babies, December 2009
Polo studies in the US so when his baby brother was diagnosed, he was far from the chaos. When I told him about the autism, however, he said, "what's that?" Being a typical California teen, Polo has become very independent. He still loved his siblings deeply though and it showed every time he would come to visit the Philippines. I knew that he worried about Anton after his baby brother was diagnosed. He would also be excited about new developments and looked forward to Skype calls to see how the other kids were doing.
Polo, Anton and Mama, Christmas 2009
Issa was too young to even know that something serious was happening. She continued to grab toys from Kuya and was always in his way. Having been the "surprise" baby, Issa (since birth) had to sacrifice for his Kuya Anton. In the womb while Anton was only five months old, she was not given the prenatal attention that all the other kids had. Mama was too busy raising an infant.
Even when Anton was a newborn, Ate Abby was always jealous of the attention we gave to our baby boy. She wanted to join him in the crib to play. She also used to say, "do you love Anton more than me?" Abby was the hardest to be hit by the diagnosis, let alone the presence of the babies. She had gotten used to her monopoly of parents' attention (Kuya Polo was too old to be jealous when Abby was born), that every praise or positive comment given to the babies was met with, "what about me?"
After the diagnosis, sibling dynamics did not change when it came to Issa. She continued to be the baby who had to give in to her older siblings. My relationship with her, however, suffered. My obsession with recovery kept me from spending time with my other children. I played with them occasionally but whenever they would play with Anton, I was always cautious that Anton would not have a meltdown. So they had to give in to him most of the time. Also, I did not realize it until later but whenever they would play, I would always interfere to make it a pseudo-therapy session.
The three little ones- Issa, Abby and Anton
Abby went with me to the dev. ped.'s office on August 7 but she never knew anything was wrong until I explained it to her almost three months later. The truth about Anton had to come out because Abby had started to exhibit negative behavior at home and in school just to get my attention. All of a sudden, Abby was bossing her classmates around and was treating yayas badly. She also started to say, "I don't want to play with Anton, he keeps grabbing my stuff."
I knew I had to set aside time to be with my two daughters even if my schedule was packed with events related to Anton. This was part of the reason why I decided to go back to being a full-time mom a few months after the diagnosis. While I was still employed part-time, however, my Ate got Abby a book entitled, "There's a Duwende in My Brother's Soup." Although the child in the book is a more typical autism case, it was good for Abby to see how a child with autism acts and how his family adjusts to their special child.
Abby learned the same lessons in "Spinning," a book I bought at the Autism Society of the Philippines convention in November 2009. I had the author and illustrator sign Abby's copy so that she would be excited to read the book. She asked me, "how come Anton doesn't spin?" I said, "because not all kids with autism are the same. Anton likes to line up things, right? That's what makes him different."
These were very effective in helping Abby understand her brother.
The most important purchase I made to address the sibling issue was a DVD called "Understanding Brothers and Sisters on the Autism Spectrum." I read from reviews on Amazon.com that this DVD was effective for other families. Abby liked watching the DVD because it was age-appropriate and because puppets were used to relay the message. Even Anton and Issa enjoyed watching the puppets!
After repeatedly watching the video, Abby finally understood that Anton needs special care. It was still important for me, however, to guide her when interacting with her brother. One day she said, "I don't want to play with Issa, she doesn't have autism." I knew that it was not enough to have told Abby once, I will have to keep watching over her and her siblings whenever they play. Sometimes she would say, "look mom, Anton and I are playing with Lego!" or she would grab the babies' hands and play, "ring around the rosie." She tries to become a mini-me when it comes to her baby brother.
Abby always reads to Anton
Last year, Abby added to the stress and desperation of the diagnosis but nowadays she has lived up to her "Ate" title. Well, of course, unless Anton tries to dismantle her Lego creation or Issa attempts to break her crayons.
Issa is a spoiled, "kulit" baby and she exercises her "bunso" privilege always. She would grab a toy from Kuya Anton and run away with it screaming (like she was the victim); or she would say "I want Kuya Anton sit down;" or she would jump on the bed and land on a "hiding" Kuya Anton. I realized after seeing all this why God gave me Issa. She was the playmate Anton needed to help him snap out of his "space out" moments. She was given to us because Anton needed to learn to socialize and share. Most of all, he needs to learn how to act appropriately because he is Issa's big brother.
Issa forces Kuya to share
I often get teased by my friends that Anton is my favorite. Honestly, I don't know if that's true. It's just that my baby boy is so sweet and affectionate (unlike his sisters) that I can't help wanting to be around him most of the time. He may or may not be my favorite but now that I have four children, I have proven that you love each one differently.
Polo was my hero in the 90's- his birth redeemed me from the craziness of youth and rebellion. Abby was my much-awaited daughter, the one who keeps nagging me and reminding me how I can be a better mother. Issa will always be mama's baby, my cuddly bundle of joy who I am now able to rightfully treat as my "bunso." And of course, Anton; without whom I would not have realized the depths of my love for my family. Whatever anyone says, I am blessed!
My four babies, December 2009
Polo studies in the US so when his baby brother was diagnosed, he was far from the chaos. When I told him about the autism, however, he said, "what's that?" Being a typical California teen, Polo has become very independent. He still loved his siblings deeply though and it showed every time he would come to visit the Philippines. I knew that he worried about Anton after his baby brother was diagnosed. He would also be excited about new developments and looked forward to Skype calls to see how the other kids were doing.
Polo, Anton and Mama, Christmas 2009
Issa was too young to even know that something serious was happening. She continued to grab toys from Kuya and was always in his way. Having been the "surprise" baby, Issa (since birth) had to sacrifice for his Kuya Anton. In the womb while Anton was only five months old, she was not given the prenatal attention that all the other kids had. Mama was too busy raising an infant.
Even when Anton was a newborn, Ate Abby was always jealous of the attention we gave to our baby boy. She wanted to join him in the crib to play. She also used to say, "do you love Anton more than me?" Abby was the hardest to be hit by the diagnosis, let alone the presence of the babies. She had gotten used to her monopoly of parents' attention (Kuya Polo was too old to be jealous when Abby was born), that every praise or positive comment given to the babies was met with, "what about me?"
After the diagnosis, sibling dynamics did not change when it came to Issa. She continued to be the baby who had to give in to her older siblings. My relationship with her, however, suffered. My obsession with recovery kept me from spending time with my other children. I played with them occasionally but whenever they would play with Anton, I was always cautious that Anton would not have a meltdown. So they had to give in to him most of the time. Also, I did not realize it until later but whenever they would play, I would always interfere to make it a pseudo-therapy session.
The three little ones- Issa, Abby and Anton
Abby went with me to the dev. ped.'s office on August 7 but she never knew anything was wrong until I explained it to her almost three months later. The truth about Anton had to come out because Abby had started to exhibit negative behavior at home and in school just to get my attention. All of a sudden, Abby was bossing her classmates around and was treating yayas badly. She also started to say, "I don't want to play with Anton, he keeps grabbing my stuff."
I knew I had to set aside time to be with my two daughters even if my schedule was packed with events related to Anton. This was part of the reason why I decided to go back to being a full-time mom a few months after the diagnosis. While I was still employed part-time, however, my Ate got Abby a book entitled, "There's a Duwende in My Brother's Soup." Although the child in the book is a more typical autism case, it was good for Abby to see how a child with autism acts and how his family adjusts to their special child.
Abby learned the same lessons in "Spinning," a book I bought at the Autism Society of the Philippines convention in November 2009. I had the author and illustrator sign Abby's copy so that she would be excited to read the book. She asked me, "how come Anton doesn't spin?" I said, "because not all kids with autism are the same. Anton likes to line up things, right? That's what makes him different."
These were very effective in helping Abby understand her brother.
The most important purchase I made to address the sibling issue was a DVD called "Understanding Brothers and Sisters on the Autism Spectrum." I read from reviews on Amazon.com that this DVD was effective for other families. Abby liked watching the DVD because it was age-appropriate and because puppets were used to relay the message. Even Anton and Issa enjoyed watching the puppets!
After repeatedly watching the video, Abby finally understood that Anton needs special care. It was still important for me, however, to guide her when interacting with her brother. One day she said, "I don't want to play with Issa, she doesn't have autism." I knew that it was not enough to have told Abby once, I will have to keep watching over her and her siblings whenever they play. Sometimes she would say, "look mom, Anton and I are playing with Lego!" or she would grab the babies' hands and play, "ring around the rosie." She tries to become a mini-me when it comes to her baby brother.
Abby always reads to Anton
Last year, Abby added to the stress and desperation of the diagnosis but nowadays she has lived up to her "Ate" title. Well, of course, unless Anton tries to dismantle her Lego creation or Issa attempts to break her crayons.
Issa is a spoiled, "kulit" baby and she exercises her "bunso" privilege always. She would grab a toy from Kuya Anton and run away with it screaming (like she was the victim); or she would say "I want Kuya Anton sit down;" or she would jump on the bed and land on a "hiding" Kuya Anton. I realized after seeing all this why God gave me Issa. She was the playmate Anton needed to help him snap out of his "space out" moments. She was given to us because Anton needed to learn to socialize and share. Most of all, he needs to learn how to act appropriately because he is Issa's big brother.
Issa forces Kuya to share
I often get teased by my friends that Anton is my favorite. Honestly, I don't know if that's true. It's just that my baby boy is so sweet and affectionate (unlike his sisters) that I can't help wanting to be around him most of the time. He may or may not be my favorite but now that I have four children, I have proven that you love each one differently.
Polo was my hero in the 90's- his birth redeemed me from the craziness of youth and rebellion. Abby was my much-awaited daughter, the one who keeps nagging me and reminding me how I can be a better mother. Issa will always be mama's baby, my cuddly bundle of joy who I am now able to rightfully treat as my "bunso." And of course, Anton; without whom I would not have realized the depths of my love for my family. Whatever anyone says, I am blessed!
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