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.

Advertisements

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

img_2961

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.

 

Weekly Photo Challenge: Beloved

E. spent two weeks with us in China, and he was quite happy. I made sure he wouldn’t get bored when his father was at work and it was just the two of us. I got him to play with the brush and paint and these are his “works.” Not a single stroke is mine — he did everything by himself. As he doesn’t really know how to hold a pencil properly yet, I thought a paintbrush would be easier for him.

To be honest, I don’t really see any meaning in these three, but I certainly love the colors he chose. I will treasure these “paintings” of E. as if they were masterpieces. No matter what people say or think of them, they are beloved by me because my 7-year old son made them. 💕

Beloved

Daily Prompt: Clutch

After a red-eye flight, a 3-hour layover and another hour and a half flight, I was met at the airport by my sisters, nephew and my son. We then headed to the beach because I wanted to walk along the beach with my son. He loves the water, but he is always afraid to try anything at any new place. This was our first time at this resort.

As always, at first he refused to step into the water when I asked him to. So, I did the routine of me stepping into it and showing him it was fun to get the feet wet. After a few minutes, he signaled for me to go back to where he was standing with my sister, and as soon as I reached out my hand, he clutched it and stepped forward.

After that, he didn’t want to leave anymore.

It was cloudy, but it was still a beautiful Saturday morning with the sound of the waves, the cool breeze and the warm sea water. And the love of my life clutching my hand.

Hope you have a lovely weekend, 💕

T.

Daily Prompt:

Clutch

Of patterned rugs and hair dryers: Autism and Sensory Issues 


My son, E. who is 6 and on the spectrum has made some progress in some areas these past few months that have really made us happy. He used to get awfully scared of the sound of a hair dryer or any loud whirring, buzzing sound, but now he has gotten used to it. I think that it helped that before we actually use the hair dyer, we’d show it to him and tell him we’re going to use it. If he’s not too close, he would just stay where he was. If not, he’d move away. 

E. also disliked stepping on patterned rugs. He’d jump over one or ask someone close to move it away, but he would never step on it. Just last month though, my sister told me he has not been avoiding the patterned rugs and actually steps on them. 
The one incident last month that made me feel so hopeful was his taking the medicine which he had earlier refused to drink. It was a cough syrup which his doctor had prescribed and which my nephew had also taken before. My nephew who is now a teenager had warned me it smelled and tasted awful (I liked the smell though!) The first time I tried to give it to E., he smelled it and cried and ran away. For the second attempt, my sisters and my nephew helped me restrain him while I tried to make him drink from a medicine cup — he was kicking and screaming and ended up spitting out the (not so cheap) medicine. For the third attempt, I used an oral syringe while he was held by my sisters and nephew. The same thing — kicking, screaming and spitting out the medicine. 

Finally, and thank God this came to me, I put some medicine into a cup, put it on the table, stood some three feet away from the table, looked at him, pointed at the cup, and in a louder-than-normal and very firm voice that I seldom use with him, said, “Drink!” 

My dearest little boy walked up to the table, picked up the medicine cup and drank the whole thing. He was a little stunned when we all jumped up and yelled, “Yay” and “Good boy!” I swear he gave us a look that seemed to say, “What the hell?” Lol. After that, there was never a problem making him take his medicine. 

E. has another trait that I hope one day soon will change. He gets extremely nervous about being touched by certain people. He is a very affectionate boy and likes kissing and hugging and being kissed and hugged in return by family and a few friends, but with strangers or people he’s not very familiar with, he would just scream or run away. In a way this is good because nobody wants to be touched by strangers, but this becomes a problem when we go see a doctor. He once kicked a doctor in the stomach while the good doctor was trying to check his throat. The doctor was sitting in a swivel chair with casters, and E. was on his father’s lap. I was so worried the doctor would get angry, but he was very gracious, and remained calm and spoke gently the whole time. 

Two months ago, I brought him to his pediatrician. He wouldn’t even let the doctor use the stethoscope on him. I had to hold the chest piece part while the doctor gave me the instructions as to where put it. 

Another problem that this nervousness can bring about is going through security screening at the airport and undergoing a pat-down. More than a couple of times at this one airport that E. has been through at least twice a year in the first 5 years of his life, I’ve been yelled at for not being able to control my child even after I calmly told them he’s autistic (自闭症). But there’s no way I can get angry in such a situation. I always have to remain calm or my son will become even more agitated. I just do the best I can to deal with the hurt and anger because apart from not wanting to make my son’s meltdown get even worse, I know there’s no use begging people to understand when you don’t speak their language. 

My son loves airports — he knows the three airports we often go to quite well and usually go straight to the ramp even before boarding announcement, but security screening is very tough for him and for me, as well. It was not so bad when he was still a baby and even as a toddler because I could just carry him. But now, when he’s almost 4 feet tall and runs very fast, it’s a big challenge for me. 

But I am hopeful. As he learns more words and he comprehends more, he will be able to go see a doctor and go through security screening without a problem. Just as he overcame his fear of the whirring of the hair dryer, his aversion to patterned rugs and certain medicines, he will overcome this nervousness about being touched. 

As a mother, I want my son to learn to overcome these things which to most neurotypical people are so ordinary, so common. Yes, we all have our quirks and things we like or dislike but we can’t expect everyone to tolerate our quirkiness, so we have to learn how to control them. I believe in neuroplasticity and that my son still has a chance to be better adjusted to living in society and not growing up expecting that the rest of the world can understand him, because that’s never gonna happen. 

Hoping. 🙂  

On Autism, Motherhood and Tolerance

AUTISMjpg

Three years ago, when I told friends about my son’s diagnosis, a few of them told me about the movie “Temple Grandin.” I kept putting off watching it because I knew I would just cry, and I was tired of crying. I did read her book , Thinking in Pictures after a friend sent me a copy, and it was moving and eye-opening and encouraged me to help my son and believe he will be able to cope eventually.

My husband still has not watched the film and won’t. Like me, he thinks it will just be a painful experience. It was painful when I finally decided to watch it yesterday. It’s perhaps the only movie that had me crying from beginning to end, NOT because it was sentimental – far from being sentimental, I think the writers and director and Claire Dane’s portrayal of Ms. Grandin, achieved  a kind of objectivity in the story-telling – but because there are many details that I could relate to as a mother of an autistic child and as a person who self-identifies as autistic.

One of the most painful scenes for me was the mother’s conversation with the doctor who diagnosed Temple with autism. When the mother asked about the cause of autism, the doctor hesitantly answered it was a form of schizophrenia brought about by a lack of maternal affection. (This was in the 1950’s, and we can understand that back then not much was known about autism.) Temple’s mother cried saying her baby was born normal, and that Temple later changed; that she wanted to hug her, but Temple didn’t like to be hugged.

(I am just grateful that my son is very affectionate. That would’ve really made it worse for me if my son didn’t like to be hugged.)

The doctor also recommended that Temple be institutionalized, which her mother refused to do.

Temple is so blessed (lucky, if you don’t like the word “blessed”) that she had a mother who pushed her to do things that might have been uncomfortable for her but truly helped her to live independently. Had her mother let her be, she would have remained alone in her own world.

So many times I’ve read articles written by supposedly high functioning autistic people diagnosed in their adulthood, decrying the treatment they received from their parents or other carers  or teachers, when, as a child, they were forced to do things that they were uncomfortable with. And now as adults, they just want to be able to do whatever they want; they don’t care what others think about them; and they expect people to accept their autism (unusual behaviors, meltdowns, etc.). They expect, demand tolerance.

To me this is very unrealistic. You live in a society. You may not like the idea, but the truth is – you cannot live entirely on your own. You need people. You need society. Unless you go hide in a cave and live with the bats.

Temple’s mother knew this. Her science teacher, Mr. Carlock, knew this. Temple realized this later on — she had to change; she had to learn to adapt to society.

The world does not revolve around you. You are not special (though you may be to your parents). You are just one of the 7.5 billion people on this planet. Each person has his/her own personality, issues, problems. You cannot demand tolerance for your behavior when you are intolerant of their own. In this world, in our reality, you will meet all kinds of people – not everyone will accept you for who you are, yet you may have to sit next to them in class or at the cafeteria; work in the same office as them; serve them their coffee. You can’t just run away or be angry with these kind of people every time you have to deal them. You have to learn to adjust to different kinds of people because they too have to learn to adjust to people like you.

And this is one thing I hope my son will learn – how to live in society.

Perhaps I am like most parents of autistic children, I worry about how my son will live without me. I cannot watch over him forever. I sometimes wake up in the middle of the night thinking what if somebody hurts him at school, and he can’t tell anybody about it? What if as an adult, he will be taken advantage of, and he wouldn’t even know it?

Temple did not begin talking until she was 4, but her mother did not give up on trying to get her to speak. She did not want to go to college to talk with people, but her mother pushed her to do so, and she went on to pursue a Masters and a PhD.

There is only admiration on my part for Temple’s mom, her aunt and her science teacher – people who saw her potential, believed in her and pushed her to be the best she could be.

Not everyone has the financial capability that Temple’s family had, but I think every child can have at least one person who will not give up on them, who will not leave them to live in their own world, and push them to live more meaningful lives.

I have never been very ambitious. My best friend used to tell me I have a small brain because I want so little in this life. As a mother, I do not want much for my son either. I just want him to be able to live independently and be happy. And that’s my only goal.

That’s the only item on my bucket list that truly matters.