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.

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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.

 

Autism and the Language of Love

Last month, my son, E. had a two-week vacation in China with us. Before we enrolled him in a school for special needs in the Philippines, he spent most of the first 5 years of his young life in China and probably considers it his real home. This vacation was going to be different from last year’s because this time he would see his nainai (paternal grandmother) again after two years.

My husband had thought E. would not recognize her anymore, yet when I told E. that his nainai had arrived, he rushed to the door and had the sweetest smile on his face when he saw her. He reached out his little arms to her, and when she didn’t pick him up, he held her hand and led her to sit on the couch and kissed her. He kissed her cheeks several times.

There were no words between them, as what little Shandong dialect he picked up from her a few years ago had all been forgotten, and the less than 5 English words she picked up from him had all been forgotten as well. But this did not stop them from communicating in their own unique way. They came up with a clapping game that kept him entertained for the next 6 days.

When the time came to say goodbye, E. did not realize he would not see his nainai the next day or the day after that. As he likes airports, he was just happy to run around in the airport and get on the plane. But hours later, when he got out of the car and realized he was back in his other home (in another country) without his father and his nainai, he became very quiet and in the late afternoon he said to me, crying, “Let’s go.”

So we went out with my sisters and my nephew (who have been his companions for the last two years.) I was hoping he just wanted to get out of the house for a while, but when he realized we were still going back to the same house, he cried. That’s when it dawned on me that he wanted to go back to China. The second night after we arrived, he was still unhappy and cried again, so I finally asked him, “ Do you want to see daddy?” He didn’t say anything. “Do you want to see nainai?” He wailed and said, “Nainai!”

I right away made a video call to my husband and asked him to give the phone to his mom. When E. heard her voice, he grabbed the phone from me and looked at his grandma and cried and kissed the phone. It was the most touching thing I have ever seen my son do. He didn’t give the phone back to me for a long time. He just wanted to watch them.

On the third day, he probably realized that he could not really be with his nainai, and that a video call is not the same as being with her, that he did not want to look at her anymore. I don’t know if he feels betrayed by his grandma; I hope he doesn’t because she loves him just as much as he misses her.

We have been home in the Philippines for almost two weeks now, and he’s back to his happy self. E. is such a sweet 7-year -old boy that I keep telling him I love him just as often as he tells people, no matter family, friend or stranger, “I love you” right after greeting them “Hi” or “Good morning” or “Goodbye.”

I dread the day, less than a couple of weeks from now, when I have to say goodbye to him again. But I know he has his way of coping — we’ve been through this before and it’s usually I who take a week to recover.

For an autistic 7-year old who is minimally verbal, E. knows how to communicate his love for the people who love him and has an amazing strength to bear the pain of missing them. I am learning so much from my son.

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