On Death and Promises

My husband and I have the weirdest conversations between a married couple simply because I am weird. One of the things we talked about a couple of years ago was what would happen WHEN I die (because I have to die first, and I would never forgive him if he dies before me! To which he agrees. He says he would like to be able to give me a proper funeral. This I truly appreciate.)

I told him that at my funeral, he can look around and see who among my friends he can marry. Well, this was too weird for him. (But perhaps he was just thinking my friends would be too old for him!)

When I told my friends and sisters about this they thought I was crazy.

Maybe. But my point is, I would like my husband to be happy when I leave. My only condition is that whoever that woman who can make him happy is, should accept my son like he is her son, because I want my son to be happy too.

Unlike the characters in the Disney movie, “Coco” who feel the need to be remembered — I don’t feel the need to be remembered. It would be nice to be remembered, but I am not sentimental about it. What matters most to me is number 1: my autistic son is taken care of until such time he can look after himself; and number 2: that the people I love will go on to live happy, healthy lives after I’m gone.

The day before my mother died, I saw the look on her face change when my then 13-year-old nephew who is my mom’s first grandchild, entered the room. Her eyes lit up, and there was a fondness for my nephew that was so visible that I, her youngest child, felt a little jealous even though I was already 44! We all knew she had not wanted to leave yet because she was worried about him. We gave her the assurance that we all would take care of each other.

I have tried to keep that promise.

I hope that when it’s my turn to go, I would get the same promise that my son will be taken care of. And that they will keep it.

🙏🏽

T.

———

Sonnet 71 by William Shakespeare

No longer mourn for me when I am dead

Than you shall hear the surly sullen bell

Give warning to the world that I am fled

From this vile world with vilest worms to dwell:

Nay, if you read this line, remember not

The hand that writ it, for I love you so,

That I in your sweet thoughts would be forgot,

If thinking on me then should make you woe.

O! if, I say, you look upon this verse,

When I perhaps compounded am with clay,

Do not so much as my poor name rehearse;

But let your love even with my life decay;

   Lest the wise world should look into your moan,

   And mock you with me after I am gone.

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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!

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.

Fear, Fascination and Autism

There are many things that can make Eli, my 8-year-old son on the spectrum , happy and very few that terrify him. To neurotypical adults, it would seem silly to be scared by the sound of a hair or hand dryer, or a blender or coffee grinder or a drill, but these are sounds that have a different effect on my son and other autistic kids like him. Thankfully, the noise from crowds don’t bother him anymore, and the hair dryer we have at home does not bother him as much as it did before. If we use the coffee grinder, he would just leave the kitchen.

Still there’s so much I envy my son for — one of which is his lack of fear of things that terrify most people I know, from tiny creatures like cockroaches or spiders to pythons. When we went to a zoo in Bohol last week,our guide showed us this yellow python. Thinking my husband was holding Eli’s hand, I couldn’t help screaming when I saw him already inside the cage with the guide. He was the only one inside the cage with the guide who showed him how to pet this beautifully yellow python. None of us adult tourists dared to go in, but Eli did and seemed to really enjoy touching the snake.

Eli also loves the ocean. Unfortunately he doesn’t know how to swim yet. Just like me and my husband, Eli can sit (or stand) on the beach for a long time just looking at the waves or the horizon. The ocean is mesmerizing. He is most calm when he is on the beach. On our last evening in Bohol, he and his father watched the sunset until it got too dark to see anything on the ocean, but I guess he was listening to the sound of the waves, and that too is mesmerizing.

But Eli has no sense of the danger of the ocean especially for people who cannot swim. And if no one is watching him, he will just keep walking towards the water. From what I’ve read, most autistic kids and adults are drawn to water, and in fact when an autistic person goes missing, the first area rescuers would search is a body of water.

The “fearlessness” of our autistic kids may be admirable sometimes, but we also have to remember that fear is one way we, humans, protect ourselves from danger, and if our “fearless” kids are not aware of the dangers that their fascination with certain things poses, it will not be good for them.

Have a lovely and safe Sunday! 💕

T.

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.

WPC: Place in the World

“For this week’s photo challenge, explore what it means to find your place in the world. Where’s your safe space? Where do you go when you need to feel inspired or cheered up? Do you prefer to feel cozy and comforted in a smaller town or do you thrive on the buzz of a big city?”

One thing my husband, my son and I have in common is we find comfort in sitting on the beach, hearing the waves roll onto the shore. It’s mesmerizing, relaxing, comforting.

At 7 years, my son still cannot verbalize what he feels, but seeing him so calm — not stimming — is enough to make me realize that, just as it is for his parents, this too, is his place in the world.

Weekly Photo Challenge :

https://dailypost.wordpress.com/photo-challenges/place/

Noli Timere

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A few weeks ago, I read an article by a writer reminiscing about his friendship with the late Seamus Heaney, and of course his famous last words, a text message to his wife — Noli timere (“Don’t be afraid”).  Unfortunately I can’t find that article anymore as I don’t remember the title nor the author’s name, so I can’t give you the link.

That article led me to read about Heaney’s last words as recalled by his son in his eulogy. And this in turn led me to remember what my mother said to me a week before she passed as I cried in front of her, exhausted from all the seemingly insurmountable problems that had befallen me — her worsening health condition, my son’s autism, not being able to get a visa for my son, among other things. She reached for my hand, as she lay in bed, and said to me in a voice full of confidence, “Don’t worry. Everything will be all right. E. is going to be fine.”

I wonder if it is just the dying’s way of comforting the living, so as not to make them worry about what life would be like for the living without them, or if somehow they have some kind of vision of what the future will be like, or if their faith is strengthened as they near that end.

But my mother’s words really comforted me, and I believed her. And I believed her words even more as indeed, after she passed, we were able to find a special needs school for my son, and the same embassy that made it difficult for us to get a visa for him, gave him a travel document instead.

Even now whenever I have a problem, apart from praying, I would think of my mother and how she would have stormed the gates of heaven to pray for me.

As a mother myself, I keep praying for my son. Some nights I lie awake wondering, fearing, what the future would be like for my son. I read articles like this one about a parent describing what life is like for someone with a 13-year old son with ASD , and I fear dying before my son can learn to live independently.

For now I can protect my son and comfort him when he is hurt or scared, but no parent can or should do this for the rest of our lives. Our children grow, and we pass on. But hopefully, our comforting words will live in their hearts and give them courage to live their lives.

************

BE NOT AFRAID
(For E.)

The sky may darken
And let fall the rain
That doesn’t seem to end

The winds may howl
Like a crazed person
Banging on the window

The lightning may strike
And give you a glimpse
Of the dark clouds outside

The thunder may roar
And cow you into hiding
Under your soft blanket

But don’t be afraid,
Mommy’s here to keep you safe
And warm as you sleep and dream
Of a beautiful sunrise when you wake.