Books, Language and Autism

E. at the Manila Ocean Park

My son is going to be 9 soon, but in his last appointment with his developmental pediatrician, he was assessed as having the language ability of a 3-year old.

Over the years, I have read articles on how to teach a minimally verbal child like him speak; he has had several tutors, special education teachers and therapists. Though he has progressed much in other areas, cognition and language are areas where he has made slow progress. Yet, I am still very hopeful that one day he will speak. What I keep reminding myself is what I heard from one speech-language pathologist a couple of years ago — for some kids, it takes a longer time for speech to come out. But as parents, we should keep “inputting data” (language) into their brains. Just because they are not speaking does not mean we have to stop teaching them to speak

And this idea is what gives me hope.

For the first five years of his life, I read to my son almost every night and that led to him being able to recite about 20 of his books from cover to cover. I started reading Beatrix Potter’s Jemima Puddleduck to him when he was not even a year old, and he loved the sound of — I’m not sure if it’s my voice, or the flow of the words, or both but he made me read it over and over again until he memorized the whole book. I would intentionally leave out a sentence, and he would say it to me over and over again until I said the line myself!

Being autistic with sensory issues, E. has a habit of chewing on things that he likes. And because he loved his books then, he chewed on all of them. Before that Jemima Puddleduck book became badly damaged from being chewed on, my husband came up with the idea of scanning it so our son could view it on the computer. But it wasn’t the same for E. . And that book was forgotten for a couple of years.

When our living arrangement changed, I felt bad not being able to read to him at night. Then one day I saw the scanned pages of Jemima Puddleduck and decided to make a read-aloud video of it. When I finally played that video for him, the smile on his face when he saw those pictures and heard my voice reading the book was more precious than a pat on the back anyone has ever given me in my whole life!

I have since made read-aloud videos of his other books, and my sister tells me they can tell when he’s missing me as he would ask to watch those videos instead of his favorite movies.

My husband and I had big dreams for our son — we had hoped he would get a much better education than we did and be interested in learning. We were eager to let him study what we, in our youth, were unable to because our parents couldn’t afford them. We had dreams for him to fulfil OUR dreams.

But life happens.

Those dreams came crashing down with his diagnosis. I honestly do not think any parent can say they left the doctor’s office thankful for the ASD diagnosis of their children. An adult person with ASD can probably be thankful for the diagnosis as it leads to an understanding of oneself. But for a parent of a child with ASD , it is different, especially when that child is non-verbal, and E. at 2 years old was still not talking. So yes, it was devastating.

But as parents, we can only be resilient. Though it took my husband a few weeks to get out of his depression, once he did, he accepted the challenge of raising a son with autism.

Now we have a new dream for our son, a much simpler and more practical one: for E. to live independently and happily.

But to get there, he has to have better language ability. And I have not only hope, but also faith, that that day will come. That with the help of his teachers and therapists, who teach him patiently and his family who love him unconditionally, he will be able to use the language that has been stored in his brain all these years. That my son will be talking to me non-stop; and I promise to God, when that day comes, I will not complain that he won’t stop talking!

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On Autism and Feeling Left Out

Eli at Panglao, Bohol

Today I read an article written by a mom who says that as a parent of a child with autism, she feels isolated. And one parent commented that she feels the same, that nobody invites her son to anything, and so she never gets invited to anything either.

I used to feel hurt am that nobody invites Eli to birthday parties. But after a year, I DECIDED not to let it bother me. For one, I cannot stand the noise of kids for so long. Eli cannot stand the sound of screaming or crying children either. He is more comfortable around older children or adults. However I do throw a birthday party for him and for the last three years, I had McDonald’s in my city organize it, the first year at their store and the last two years at his special education school. His classmates had so much fun especially when the mascot came out. This year’s was the noisiest party so far , but Eli was fine with it because he already knows his classmates and teachers, and the mascot no longer scares him. I had a headache from all the noise, but seeing Eli so calm amid the raucous, and his classmates, most of whom are minimally verbal, participating in the games and so excited to see the mascot, was fulfilling.

For the last three years, I always gave a few party bags from Eli’s party to the kids with special needs at the public school special needs center, and they were always happy to get stuff from McD. Their smiles and thank-you’s were enough to make me happy.

I understand some parents’ feelings of isolation, but I guess what I want to say is, we don’t have to feel this way. We don’t have to feel sorry for ourselves because we can do something about this. Instead of waiting for people to reach out to us, we can take the initiative. And we don’t have to reach out to those who cannot accept our children’s condition, we really do not need them in our lives. There are people out there who not only understand and accept our autistic children for who and what they are but also appreciate them for their specialness and our struggles at raising such children.

It is very difficult for Eli to have friends save for his two cousins and my cousins’ son and daughter. Neurotypical kids will always see him as strange, and I don’t blame them. They are children. I have witnessed several times how Eli tried to go near such children, and how they looked at him and moved away from him. It hurt me, but I’m almost sure it disappointed him more. But this is reality. In time he will learn what everyone of us should learn, not everyone can be a friend. Not everyone can be accepting of who we are, but there are those who do care, and they are the ones that matter. There is no need to be friends with people who are embarrassed by us. They are not worth our time or energy. Remember there ARE people who will be very grateful for our time and attention. We should give it to them instead.

Life is not all roses, even for neurotypical people. We can only try to live it the best we can for ourselves and more importantly, for our children on the spectrum.

Week 10 Prompt: Juxtapositions (A Look at “First Reformed”)

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Image source

There are a number of reasons to like this movie: for me, the first three would be Ethan Hawke, ETHAN Hawke and ETHAN HAWKE!!! And for my friend who recommended this movie, it’s Amanda Seyfried.

But if you are a huge fan of plot-driven films, this may not be your cup of tea. My friend thought this movie ran for 3 hours when it’s only less than 2 hours long.

The pacing is a little slow, even camera movements are predominantly slow. As I don’t have expertise in film, I can only say that as a viewer, I find the slowness a reflection of how Reverend Toller (Ethan Hawke) seems to be living his life — one day at a time, hardly any movement or willingness to move on.

Light and Darkness/Shadow

There are several shots of the very white and neat exterior of the First Reformed Church in broad daylight, and probably the same number of shots of the dark bedroom of Reverend Toller. Sometimes there’s only one candle lighting the whole room. To me this  reinforces idea of the duality in his personality in how he presents himself to the outside world (one who has strong faith, knows how to deal with all kinds of people) and how he really feels and thinks about himself. He leads the service on Sundays, even though on his own, he says he is incapable of praying. (To me, though, his writing in his journal is an act of prayer.)

Hope and Despair

When Reverend Toller speaks with Michael, he speaks against despair. Ironically in the end, he fails to rescue Michael from that despair which turns out to be infectious as he, himself, tries to end his own life.

Mary, on the other hand, is the epitome of hope in her own quiet way — despite grieving the loss of her husband, she looks forward to having the baby that Michael had wanted her to abort.

Interior and Exterior

Reverend Toller on the outside, exemplifies calm and composure, just like the ultra neat and white exterior of the church, but inside he is full of turmoil and uncertainty. His soul probably needs as much cleansing as his broken toilet that needs unclogging. And that metaphor becomes literal when he tries to use the drain cleaner to kill himself.

This duality is quite common. How many people do you know whose actions have surprised you as they are “out of character”? With Reverend Toller, however, there is dramatic irony— the audience are amply prepared for his decision to end his life, but the people around him are not.

Perhaps the one idea from this film that I liked best is restraint. Reverend Toller’s attraction to Mary is developed quite subtly. At first he seems to be simply a very dedicated pastor helping out a parishioner. But one scene that made me certain he is falling for her is that of the two of them cycling and, as he writes in his journal, “I had not been on a bicycle, I think, in 20 years. I was afraid I would fall.” And he went to muse on the curative power of exercise. There is a look of pure joy on his face as they bike on the trail.

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Spiritual, though not as religious as Esther, Mary brings out the spiritual in Reverend Toller. With her, he can pray with words and with his soul. Yet, he has to restrain himself in his attraction to her. This he is able to do for a while, but after Mary appears before him as he is about to drink the drain cleaner, that restraint finally gives way to full expression in an embrace and a long kiss. This last scene is my favorite part — the feeling of finally letting out what you have been holding in for a long time is more than liberating. It’s exhilarating.

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For me, this movie is simply another reason to love Ethan Hawke.

A Prayer for Elijah and Every Child with Special Needs

Dear God,

Thank you for blessing me with this wonderful creature that is my son, Elijah, whom I named after your great prophet, in the hope that he, too, would grow to be as faithful and as eloquent in spreading your word. Though, as yet, he has not been blessed with the gift of words, Elijah, just by being who and what he is, still succeeded in converting the ones closest to him from being self-absorbed and impatient individuals to ones with an almost impossible amount of selflessness and forbearance. Thank you for making him an instrument in bringing out the good in people around him.

I pray for Elijah and children like him who are special in their own special ways, that You grant them the ability to one day, live independently, and not wholly rely on other people for their daily needs.

I pray that one day, they will be able to express themselves without being frustrated at the inability of the people around them to understand whatever it is they want to express.

I pray that one day, they will be able to share what it is they sense that makes them smile that sweetest of smiles, what makes them laugh that most infectious laughter that seems to come out of nowhere.

But should this not be part of the plan, I pray that in Your mercy, you send them people who will love them for who and what they are, long after their parents are unable to look after them.

I pray that You bless them with loving individuals who will guide them in navigating the complexities of life in this sometimes cruel world.

I pray that despite all the troubles they may encounter in this life, they will always have that joy that only they, in their specialness, can find in their own world.

And may they always have it in their unblemished hearts and minds that life is beautiful and that it is worth living.

Finally, I thank You, dear God, for the people who have helped, continue to help and will help Elijah and every special child like him, live meaningful and happy lives.

May you bless them a hundred, a thousand fold for their kindness and dedication.

May they be grateful as I am for the opportunity of having such a special human being in our lives.

And may they praise You, like I do, for Your boundless generosity and mercy.

Amen.

Week 8 Prompt: Happiness

Happiness is…

Having the ability to look at the past and be grateful for it;

Living in the moment with the knowledge that it is not going to last;

Being hopeful for the future that the ones we leave behind will have better lives than the one we had.

Happiness is having faith that everything is going to be all right.

Have a happy week!💕

Mindanao

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I have to admit I am a little scared to go home to Mindanao this time. I actually cried as I was packing this morning. Living for so many years in China where the only explosions I hear are from firecrackers or fireworks, I have become too comfortable and a little cowardly. In 2001, when the government declared an all-out war with the rebels, I dared to go to Marawi to accompany my journalist friend who was going to interview a religious leader there. On our way to Marawi, we could see and hear helicopters strafing certain areas. I was scared, but also thought of it as an adventure, something I could boast about later on.

Then I left for China. Seven years later when I went home in the summer for a visit, rebels threatened to attack my city. It was the first time I felt real FEAR. Seeing my sister deathly pale and cold, watching my mother pray the rosary as we all huddled in the bedroom, I nearly went crazy with fear.

Now, I am going home again to a conflict-ridden Mindanao. I envy my fellow Mindanaoans , who do not  allow their fear to defeat them, who continue to believe that this too shall pass. I have lost my Mindanaoan courage and optimism, but I hope to get them back when I arrive home. Soon.

Peace.

 

T.

 

Mornings and Beginnings

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View from my balcony 

We recently moved to a new apartment, and I am quite happy to have moved. This year has been one of changes and challenges, and I’ve been able to cope with all these sometimes overwhelming challenges pretty well. For this I am grateful to my husband and my sisters for everything they do and are in my life. So moving to a new place is symbolic of a new beginning for me — life without my mother, and living apart from my beautiful son (for a few months.)

Now that  I only work 3 afternoons a week, and I do not have my son to look after, I can sit for a few minutes out on my balcony and wait for sunrise as I sip on my morning coffee. Then I go out for a walk  and come back to prepare hubby’s breakfast.

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View from my balcony

Each day, I am trying to be hopeful and look forward to better days. I know they will come.

Every morning is a promise of a new beginning.

Wishing you beautiful mornings and wonderful beginnings. 🙂