On Autism and Feeling Left Out

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 am not bothered that nobody invites Eli to birthday parties. For one, I cannot stand the noise of kids for so long. For another, 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 was the noisiest party ever, 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 usus. They are not worth our 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 for our children on the spectrum.

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Remembering Mother

It’s been two years since my mom passed on, yet a part of me still feels she’s just back home in the Philippines. But that feeling doesn’t last very long because I am conscious that I just can’t make a call and hear her voice again.

Life is so different without a mother, even for an adult daughter in her 40s.

I have so many fond memories of my mother as she was a funny woman who laughed loudly and was talented at story-telling. She could never tell a story sitting down — she gestured; her facial expressions changed as quickly as Chinese opera players changed masks, and her voice made it difficult not to imagine whoever she was portraying.

My mother was a very interesting character; I hope one day I can really write a story about her. She would love that. Since I started writing poetry in high school she had asked me to write about her, but I only started to write about her as she lay dying, two years ago.

One of the things I truly regret in my life was not being able to give a good eulogy for her. My mother loved drama, and she would’ve liked something dramatic at her funeral (and I say this with fondness for memories of her ), but unfortunately I failed.

Last week I bought flowers (photos above) to put next to her picture which I keep in my apartment. It was her death anniversary, and wherever she is, just in case she has a way of knowing, I wanted her to know I still think about her and wish she was just a phone call away.

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?

Daily Prompt: Purple

One of my sisters is crazy about things purple. So far she hasn’t thought of dyeing her hair purple, or maybe she has but can’t bring herself to do it, which is good.

So whenever I buy her something, I make sure it’s purple. One good thing (for her, (but not so much for me) about her obsession is whenever I see something of this color I immediately think of her, and even if I’m not interested in the thing itself, part of me is tempted to buy it for her.  Grrrr.


When I saw these flowers on campus, of course I remembered my sister. Luckily for me, she’s not crazy about flowers.

Have a lovely a week!

T.

The Daily Prompt: Purple

Weekly Photo Challenge: Wish 

This week’s theme for the Weekly Photo Challenge is “Wish,” which is quite apt for my situation at this moment when I’m at the airport, again, to go home and see my son and be with my sisters as we remember our mom’s passing a year ago this month. I was informed a couple of hours ago that my connecting flight has been cancelled due to maintenance work on one of the air traffic radars. 

This is just a 5-day trip, and I have to be back at work on Wednesday, but now I might have to spend a day in Manila and waste time not being with my son. 

I’ve used this photograph before, but he is all I can think of right now. 

My wish is to see my son tomorrow. 

Weekly Photo Challenge: Wish 

Weekly Photo Challenge: It’s not this time of year without …

Christmas decorations start getting put up around September in the Philippines. For my family the excitement starts to build up after the feast day of St. Michael ( the patron saint of our city) on September 29th, and All Souls’ Day on November 2nd. And Christmas doesn’t end until after January 6th, the Feast of the Three Kings. 

Since living in China, I have not been  really excited about Christmas. When I first came here, there were hardly any Christmas decorations. Now, they are everywhere and young people “celebrate” almost every Western festival, including Thanksgiving. But it’s not the same. It does not feel the same.  Even at church, they see the whole thing as a performance , like a curious opera. It only makes me sad. 

This year Christmas will feel even stranger, especially for my sisters and nephew who will feel my mother’s absence more than I will or do. My husband and I will miss our son who will be celebrating Christmas in the Philippines for the first time, though I am excited for him. 

It’s not Christmas without family and church and happy people buying presents for loved ones and greeting strangers, “Merry Christmas” (and not the fake “Happy Holidays!”) 

It’s not Christmas without knowing the story of Jesus (hence the crèche in the photo) and that Santa is NOT Jesus. 
Weekly Photo Challenge: It’s not this time of year without … 

Stop. Look. Listen. Feel. Be grateful. Move on. 

   

Sunset at Dalipuga, Iligan, Philippines 


One of my favorite poems that I can recite by heart is Robert Frost’s Stopping by Woods on a Snowy Evening. I kept reciting this poem to my baby when I was still pregnant, and even after my son was born. HBO’s Classical Baby The Poetry Show includes a reading of this poem by Susan Sarandon, and it is now my 5-year old son’s favorite part of the video.

A thought came to mind today as I watched my son give me the sweetest smile when the video clip began. A few months after our son was diagnosed with Autism, my husband wished Eli would not grow so quickly. Today, only for a moment I wished Eli would never grow up, so people can excuse his strange stimming habits, his speech delay and other autistic traits. Every now and then  I worry about whether or not he will be able to live independently, when my husband and I won’t be around to look after him anymore.

Frost’s poem talks about how we, once in a while, encounter something that make us wish could last at least a lifetime, but we all have other things to do — duties, responsibilities, roles to play in other people’s lives — so we have to move on, continue living our lives.

The speaker in this poem though was truly in the moment. He   noticed his surroundings: the snow-covered woods, the frozen lake; he heard the sound of the harness bells and the wind. He also used his imagination (“My little horse must think it queer…”), and was quite aware not only of the lack of danger (…He will not see me stopping here/ To watch his woods fill up with snow), but also of his responsibilities and of the life he had to live,   (But I have promises to keep/ And miles to go before I sleep/ And miles to go before I sleep.) 

Oftentimes I look at my son and wonder what life will be like for him. Will he ever be able to speak like a neurotypical person? Will he be able to read by himself the books that he loves for me to read to him? Will he be able to write down his own name?  But then I stop myself from doing this, and instead do things with him. Not much use wondering about the future when so much of it depends on the present.

What I liked most about Frost’s poem is the idea that though we can (and we should) live our lives — face our responsibilities, fulfill our duties, find our way in the darkness — we can stop once in a while and just enjoy what we have in our lives: food on our table, clothes to keep us warm (or cool), roof over our heads,  air we breathe, water we drink, family, friendship. And love. And faith that everything will be all right in the end.

Thank you. Salamat. 谢谢。