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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Week 4 Prompt: Dream

Dream beautiful dreams,

Extravagant dreams,

They don’t cost anything

But time and energy–

Both of which you need

To make those dreams

Come true.

What is your reality?

whatisyourreality

Reality is whatever means most to you. Some may see your reality as an illusion, but reality is perception. And what you perceive to be most important in your life is your reality.

I was reminded of this after  my 4-week stay at home in Mindanao with my son and my sisters and nephews, in a city 45-minutes from Marawi where war is raging. Every single day, we’d hear helicopters or planes on their way to Marawi. Every single day I was there, there’d be ambulance sirens. Soldiers with rifles walked around the city (this is a common sight though. We’ve always had soldiers or policemen patrolling the streets, even outside our cathedral.) By 9pm, the streets were quiet because of the curfew (our island is under Martial Law.)

I have never personally thanked any of the soldiers I saw in the mall (young men and women in their routine break from the war doing their shopping). I really wanted to, but I didn’t want them to think I was being weird or whatever. But I am truly grateful, as most of the residents in our city are, for these soldiers’ bravery and dedication. Because of them Iliganons are able to sleep well at night, secure in the thought that they would never let the enemies take our city the way Marawi was taken.

Now that I’m back in “safe” China, I am able to think again and look back at life in Mindanao.

In those 4 weeks, I was so busy “living” that I had little time for thinking and socializing — no Facebook, no Twitter, no WordPress, no texting. I had lunch with a couple of friends twice, and that was all the socializing I did. Every day I was busy being a mother to my son, and being a sister  to my sisters and an aunt to my nephews, and spoke with my husband for a few minutes on the phone. I didn’t have time nor the interest to read or watch the news. I was so out of the loop in what was going on outside of my family.

Yet I didn’t feel I was missing out on anything.

Home. Family. This is my reality; this is what is most important — that the ones I care about the most are safe, and that we are whole as a family.

This is my reality. What is yours?

On Reality

reality

When I was still a child, I often heard my mother tell people about how I liked to look up at the sky —  wondering, (over)thinking, imagining, which was why she didn’t let me wash the dishes. It took me forever to finish.

These days I find myself doing the same thing — taking some time to finish washing the dishes because I keep looking up at the sky from my kitchen window and wondering, “Is there somebody up there watching us live our lives here below?”

I shared this thought with my husband, who simply laughed and said, “Oh, yes! And they are looking down and saying, ‘Oh look at this cute little girl bravely asking such questions!” (Let me be clear on this one: No one else thinks I’m cute except my husband. That’s why he’s my husband.) 

Ever since I read Shirley Jackson’s “The Lottery,” Marquez’s “The Handsomest Drowned Man in the World,” and Kafka’s “Metamorphosis” over twenty years ago, I’ve always wondered about the nature of “reality.” I remembered asking the question, what if there was another world where their idea of reality is different from ours?

It was a few years later that I read Bradbury’s stories, and watched “The Matrix” and my idea of “reality” was further changed. Two years ago I watched “Interstellar” and the scene where Cooper was finally able to communicate with Murph (they once thought there was a “ghost”) made me think of what we think is “real” or “imagined.”(Some of my friends who are into science fiction weren’t very impressed with “Interstellar,”  but I’m not a big sci-fi fan, so it was very impressive for me.) 

These days there are more and more people talking  about the simulation hypothesis and consciousness and how human beings can suddenly change because of some damage to the brain. Reading about the brain and consciousness and theories on reality and our existence makes me even more eager to know the truth about our existence, our reality.

Just yesterday I started watching the HBO TV series, Westworld, and perhaps this is the reason at 11:31 in the evening I am still up writing this. Hopefully with the popularity of this TV series, more people will be asking questions about our existence and actively seek answers to these questions.

Who are we?

I really want to know.