Tuesday, April 22, 2008

Autism: A gift of hope, courage and inspiration

Autism: A gift of hope, courage and inspiration
By Jeanne Tan Te

* It is my sincerest hope to continue inspiring parents who are facing the same dilemma that we've been through, that I share another story from the very courageous and giving lady, Awit Dalusong

It is my sincerest hope to continue inspiring parents who are facing the same dilemma that we've been through, that I share another story from the very courageous and giving lady behind, Awit Dalusong:

"A few weeks before giving birth to Ethan, I was busy surfing the internet trying to update myself on the latest research on how to take care of a newborn. When, suddenly, I was directed to a website with these words on the front page, "God gives special children to special parents." Immediately, I turned off the computer and said, "Well, I don't think I want to be special."

As fate would have it, two and a half years later, I was once again in front of the computer, trying to figure out why my son lost his language and why he has failed to make eye contact with anybody including his mom and dad. It really started with an innocent question from a friend. She asked me, "How does Ethan call his Ate Colleen?" I answered, "He doesn't really call her anything. He had about 60+ words but after his second birthday, his words suddenly disappeared. I think it's because he's been watching too much TV." That night, I got a text message from her with these words, "not to alarm you or anything but please have Ethan checked right away because it's unusual for a child to lose his language according to my uncle who is a psychologist." I deleted her message right away. Fear had hit home, and it hit me hard.

The Autism Society's website confirmed any mother's worst nightmare. They enumerated fourteen behavioral signs and symptoms that may indicate autism. If the child manifested seven signs, then he needed to be diagnosed immediately. It was funny how my husband, Edward, and I desperately omitted some signs so Ethan wouldn't meet the seven signs or symptoms. I vividly recall saying, "I think he only has five signs, six max. Maybe he doesn't have autism after all." But, deep down, I knew the writing was on the wall. For the next several days, I never felt more scared, never felt more desperate and never thought I had so much tears to shed. We just knew he had autism. The diagnoses from the development pediatricians were mere formalities.

"Why my son?" was the question I asked myself everyday while I cried myself to sleep. Ethan crawled, lifted his head, sat, walked, uttered his first word exactly when he was supposed to, if not ahead of most kids his age. At eighteen months, he had uttered more words than his sister. His repertoire included the names of the secretaries in his Dad's office including complex words that a 3 year old may have difficulty pronouncing. He was a very happy boy with a constant smile plastered on his chubby little face. I fondly recall the Christmas before his second birthday, Ethan was dancing to the tune of the latest dance craze. He also gamely helped me show off his extraordinary verbal ability by perfectly identifying all the words in the flashcards. Everyone was really impressed with Ethan that I carried those flashcards wherever we went. Ethan (and I) enjoyed the applause and admiration. Then, out of the blue, autism entered our house, like a thief in the night it snatched my son's soul away from me. At two years old, our son virtually disappeared.

From a bubbly toddler, Ethan transformed into someone I barely know. He walked in circles, opted to play on his own, and the most devastating of all was that he seemed to have forgotten who his parents were. He had a blank look on his face all the time, our boy seemed lost, oblivious of our presence...

Edward had to kick me out of my depression and told me to "get to work because Ethan won't get well with you just sitting down." I called the Behavioral Management for Autistic Children (BMAC), Inc. (thank God for their website) and told them I wanted my son to undergo Applied Behavior Analysis (ABA) therapy ASAP.

Edward and I went to two developmental pediatricians and both confirmed that Ethan was indeed in the Autism Spectrum. We went back to the internet in search for hope. After a few days, we stumbled upon the website of the Autism Research Institute (ARI). ARI's theories on the biomedical approach in treating autism offered a new lease on life for our little boy. Incredulous as we were, our skepticism was still there. But it also offered us hope, and for a parent of a special kid, hope is all you could ask for. Prior to discovering the existence of BMAC, ABA therapy and the biomedical intervention of the Defeat Autism Now (DAN) movement, I felt so hopeless. I kept picturing Ethan ending up in an institution. My nightly prayer was for God to not let me lose patience in taking care of my boy for the rest of his life. In fact, one developmental pediatrician told us point blank, "Your son is autistic, and he'll forever be autistic." From that moment, we vowed to prove otherwise.

A month later, we went to Hongkong to meet with a DAN doctor who helped us get started with Ethan's biomedical and dietary intervention. If we were to help Ethan, Edward and I felt that we should address the behavioral and biomedical issues related to autism to ensure success. We felt we owed it to Ethan to explore every possible treatment available to help him recover. The DAN doctor told us that along with the ABA therapy, Ethan's biomedical interventions will put him on a faster track to recovery.

Ethan's first day of ABA was on June 28, 2004. I remember how frustrating the first session went. Ethan practically cried for the first two hours. I thought he could have cried longer had he not exhausted his energy from all that kicking, screaming, and running away. As the days rolled by, Ethan behaved better. For that alone, living with a child with autism seem to be more bearable.

However, Ethan's lack of expressive communication was still a very deep concern for everyone in the family (especially his grandparents). So, in the summer of 2005, I flew to Canada and the United States to attend a couple of workshops on Verbal Behavior spearheaded by Dr. Vince Carbone.

When I came back home, I was very eager to share what I learned from the workshops. I was ecstatic that the staff was excited to incorporate Verbal Behavior in Ethan's program. I have been blessed to work with a team that was very supportive in my endeavors to strengthen my son's program.

Ethan recently turned 4 years old. He knows all the uppercase and lowercase alphabets. He knows his numbers from 1- 20. He easily identifies all the shapes, colors, body parts and animal sounds. He has about 300+ receptive vocabulary. He knows the concept of opposites. His fine motor skills have dramatically improved to indicate that he now has the ability to concentrate on tasks. He feeds himself during mealtimes with great scooping control. Our greatest achievement by far is that Ethan can now sight read common words. But, Ethan is still a work in progress. He still has very limited expressive language. Most of his words are just approximations. His social skills need to be addressed. But there's no denying that he's had a major leap in his cognitive skills. A year and a half ago, he was a boy who didn't know any nursery song. Fast forward to today, Ethan can fill in words to some of his favorite songs. The point is, there is light at the end of the tunnel. The tunnel might be long and winding, but that light is a guide for me to persevere more for my son.

The year 2005 has been good to Ethan. Ethan got a coveted slot at International Montessori School, a school with a well-established inclusion program. The directress, Ms. Judith Gonzalez is very supportive with Ethan's dietary and biomedical intervention. She has been an answered prayer to a mother like me. The icing on the cake is that the school uses ABA techniques during Ethan's pull out sessions with his SPED teacher. Ethan's socialization skills practically blossomed overnight. He now enjoys being around other children. A far cry from several months ago when he opted to be left alone and showed no interest to be part of a group.

I am often asked what keeps me going despite the fact that my son has autism. The answer is simple, I have fully accepted Ethan's condition but I also haven't given up hope that I will recover him. Don't be afraid to tell people that your child has autism.

Upon confirming that Ethan was in the Autism Spectrum, I was afraid that my friends would pull away from me. Believe it or not, I never felt more loved and more understood by the people I cared about the most after I revealed Ethan's condition to them. Also, it's important to study. The best way to fight autism is to face it head on with courage, conviction and research. Nobody has all the answers to your child's condition. Parents are in the best position to decide what they feel is best for their children. I am currently doing some volunteer work for the Generation Rescue group. I also moderate an online support group for Filipino families affected by autism. Every week, I receive several emails from parents from here and abroad who wish to learn more about helping their children. Nothing excites me more than reading emails from parents inquiring about autism and recovery.

Yes, Ethan is a special child. He has made significant steps but he is still on the proverbial long road to recovery. Every now and then, my six year old daughter innocently assures me that "Ethan is on the road to recovery but there's just traffic, Mom." I still hope that Ethan will attend a good University, borrow my car to go on dates and get married someday. Edward still hopes that his little boy will be a world-class athlete. Yes, we still have high hopes for him and we will never give up until we find the solution.

They say that God gives special children to special people. We truly believe that parents of special children are some of the greatest caregivers in the world, the uber parents as they say. It's a tough honor, but it surely is worth living up to. Every child with autism deserves nothing less."

See also related posts :
Autism: A gift of hope, courage and inspiration
Autism - Checking for Symptons
Light at the end of the tunnel
Autism : Brief List of Where to Begin
Autism (part 2): Signs of Autism
Raising a Child with ADHD
Autism Resources for English speakers in Hong Kong