On Autism, Motherhood and Tolerance

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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.

 

To a Wonderful Father 

You dreamt dreams
Bigger than mine were
Before he was born.
They grew even bigger
Weeks and months
After he was born.
Then we were told
Something was wrong.
It would take a while
For him to start talking.
Our friends told us
He may never go to college.
And we were crushed.
You, with the bigger dreams,
Devastated.
But you bounced back.
You fought
And continue to fight
For this little boy
We brought to this world.
You changed
From a dreamer
To a realist.

No more dreaming.
Just doing everything that is best

For your son.

Happy Father’s Day to all wonderful fathers! 

De-stressing after socializing 

As an introvert and a creature of habit, I get stressed when my routine gets thrown off especially by socializing with people with whom I’m not really keen on socializing. A friend asked why I meet with such people when I don’t like doing so. The answer is simple: because as a member of society, I have to.

I have a very small circle of people I get in regular contact with, and I usually initiate the communication. So when I have to meet with people outside that circle and put on some kind of a role, where I make “polite” conversation, I get exhausted after such an “event.” It IS like an event.

You may say, ” You don’t have to pretend! Just be yourself.” Now, if being myself is looking unhappy while having a meal with people, is that a good thing? You may also say, “Nobody is forcing you to hang out with these people.” Well, I am forcing myself to hang out with these people because I do not want them to think there is something wrong with them that I do not want to spend time with them! This is really true — it’s NOT them; it’s ME! Just because I do not find them interesting or like listening to them does not mean they are bad people. They are not, so I do not want to hurt their feelings. Besides, what I feel about them is not a rational judgment of them as a person. What I feel does not really determine who or what they are, but it says so much about who and what I am. Hence, I socialize and suffer afterwards.

So what do I do to de-stress after socializing? I go to a place where I don’t know anybody and nobody knows me. And then I go dark.

Earlier today I visited a park I had not been to in 10 years, and right now I’m writing this as I’m having coffee at a McDonald’s I had not been to in at least 5 years. It’s a busy place, but nobody’s talking to me, and I’m at peace.

Is it age that makes me get easily exhausted after socializing and disoriented after a change in routine? Or am I no different from my son?

Here are some photos I took at the park.

Hope you have a relaxing weekend!
T.


Zhong Shan Park, Xiamen 

On “Engaging Autism”

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          As it is Autism Awareness Month, I feel I should do my share in promoting awareness of this condition which affected my son. Even though I suspected ASD as soon as he turned two years old, it wasn’t until E. was 2 years and 6 months that he was diagnosed with ASD. And even though, I was quite sure he was autistic even before the diagnosis, it was still devastating when I read the diagnosis. It was like a death sentence. But that was so 2013. We have since accepted, embraced his autism and just keep looking for ways to help him.
          These days I’ve been reading Engaging Autism by Stanley I. Greenspan and Serena Wieder. We’ve had this book for almost 4 years now. It’s one of several English and Chinese books my husband bought after our son was diagnosed, but at that time I really could not focus on reading about autism. Now I wish I read the whole book 4 years ago. I would have been a better mom.
          Today I want to share with those who are interested in reading about autism some of the things I learned from the book.

1. If they are under stress, autistic children can resort to scripting which they use in a “self-stimulatory way, to pull away and organize themselves.” Instead of telling off a child for scripting, the caregiver can try to understand that perhaps the child is under stress, what caused the stress and help the child to de-stress.

2. Do not yell at a child who is exhibiting undesirable behavior. Autism is a neurological disorder, and autistic children’s nervous systems work differently. An autistic child may crave certain sensations or have sensory problems. My son went through a phase of chewing on whatever he could get his hands on – books, pencils, plastic spoons, my iPhone (!) He also went through a phase of playing with spit, and he spat on everything he happened to like – his favorite books, his favorite spot on the couch, his favorite corner in the bedroom, the sliding doors, etc. There were times when I was so tired and sleepy, but he wasn’t and just kept “blessing” everything with his spit that I lost it and yelled at him. That didn’t stop him, of course. He just kept doing it. Thankfully he finally got over it.

3. When an autistic child is having a meltdown, do not think he is just being naughty or being manipulative and scold him because most likely he can’t hear you and therefore can’t understand you. A meltdown actually shows “real helplessness. The child is feeling so disorganized that all [he or] she can do is kick, scream, or sob. The fact is, young children don’t have a lot of control over life. And they aren’t always able to understand why they can’t do what they want to do, or have to do things they don’t want to do.” I have witnessed this several times in the past with my son. Fortunately, I had learned this early on and did not scold him during or after a meltdown. I would just look away, make soothing sounds sometimes and say, “It’s OK.” I’ve seen other children having a meltdown and the parent yelling at the child to be quiet which only led to the child screaming louder.

4. “…Overstimulation of the child by too much activity and various physical and emotional changes” can contribute to meltdowns or regressions. When my son is left to watch his favorite videos on YouTube during the day, he will most likely be up all night scripting and stimming. Although I’m grateful for these videos which have helped him with his language, excessive exposure to electronic devices such as the iPad and smartphones which he learned to use at such an early age, is detrimental to his development.

5. Meltdowns and regressions can also be brought about by changes in diet and nutrition. (Conversely, a change in diet and nutrition can improve a child’s behavior.) The book only mentions that if a child “gets more sugar or more chemicals in his food as usual” he may “get more reactive to emotional stresses that he could ordinarily handle.”
          But having read about the Gluten-Free/Casein-Free diet, I honestly believe that what certain autistic children ingest can have a strong influence on their behavior because I have seen this very clearly in my son. I have often talked about this with parents and caregivers of autistic children that I have met. Most of them are sadly skeptical and most likely have not given it a try. In Asia where MSG is a staple, it is very difficult for a lot of households to even think of cooking without it. But my son’s behavior has certainly improved with an MSG-less, additive-less diet. He used to be hyperactive and laughed for no obvious reason, but he has since changed. Now he has a restricted diet of rice, meat, fish, vegetables and fruits. I only let him drink water and homemade juice (with honey to sweeten it).

Every autistic child is unique, but some have the same speech or behavioral problems. I hope this humble sharing can be of use to the reader. 

Have a lovely week!

T.

“Mothers are all slightly insane”

(The title is from J.D. Salinger’s Catcher in the Rye)

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Having arrived back from the Philippines for two days now, I am missing my son so much. I think of the few days I spent with him and recall his smile and his scent and his little arms when he hugged me. And then I go to class looking miserable. Life.

When I’m with my son, I feel like I’m a human jukebox who sings whatever he wants me to sing, or recites Frost’s “Stopping by woods on a snowy evening,” or one of his books. Most of the time, I forget lines from the book or skip some and he promptly corrects me, having memorized almost all of his books and Frost’s poem which I’ve recited to him since he was only 4 days old. (Yeah, yeah. It’s my favorite poem, so.)

My son’s musical taste ranges from classical to pop to nursery rhymes. My husband made him watch Barnabas Kelemen’s performance of Mozart’s violin concertos since he was only five months old, so he is quite familiar with the notes of the concertos. He was so into this video that during his ABA therapy sessions, the therapist used the video as a reinforcement. When the therapist asked me what videos my son liked, I told him about Barnabas Kelemen’s concert. He just wrote it down and said he’d check it out and use it as a reinforcement. The following week he said to me, “So this is classical music? I thought this was some cartoon character or animation.” I thought that was funny.

Although I’m not really a Katy Perry fan, for some reason I got into singing “Teenage Dream” to my son to make him sleep when he was a baby until he was two years old. I would hold him and rock him to sleep while singing this song. And then one day when he was about three years old, I heard him singing a melody which I thought was familiar and realized it was the lines from the song, “You make me feel like I’m living a teenage dream, the way you turn me on./ I can’t sleep/ Let’s run away and never look back/ Don’t ever look back.” Yikes.

These days, though, he likes Franciscus Henri’s version of “Six Little Ducks.” I don’t know why. He’s known these rhymes since he was a baby, and he still likes to listen to them and when I’m around, he makes me sing some of these. A few days ago, he made me sing “Six Little Ducks” so many times (perhaps to make up for the days when I wasn’t around?) And each time, he rewarded me with a tight-lipped smile that seemed to say we shared a secret together. It is a kind of a secret. No one can sing “Six Little Ducks” like his mother — with feelings. My son is used to seeing me act goofy. I wonder what goes on in his mind when he’s watching me sing his favorite nursery rhymes complete with action and facial expression. But seeing his smile is enough to make me go on being goofy. I’m a clown.

Whenever I think about acting goofy in front of my son, I always remember my mother and how goofy she was with me. She was the goofiest woman I know, and that’s what I missed most about her. It felt kind of strange when, talking with my sisters, we had different memories of our mother. They said they did not really see the affectionate side of our mother, that she was serious and strict with them. She was that too sometimes, with me, but I remember her hugs and kisses and laughter more. I remember telling her she was not like other mothers, that she was crazy in a good way. She was the kind of mother who didn’t mind being called “cat” and would respond with “Meow.”

My mother was not perfect, but she had an interesting personality. She can be a good character for a novel. Maybe one day I’ll be able to write about her, which is what she used to ask me to do — “Write about me. Write a poem for me.”

It’s been a year since she passed on, but somehow I don’t really feel she’s gone. I only do when I think about it, then the memories come flooding back and I feel sorry for her, for what she went through during the last months of her life.

This post was supposed to be about me being a mother, but I’m ending it with thoughts I have of my own mother. I guess there’s a lot of my mother in me even if there are some things about her personality I do not want to inherit. Meow. But if what I got from her will make my son remember me with fondness, then I’m grateful. I would like my son to remember me with a smile or with a laugh.

‘Mothers are all slightly insane.” – J.D. Salinger

Weekly Photo Challenge: Against the Odds


I’m back on WordPress after over a month of silence! 

The reason for the silence was I spent all my time and energy making sure my son had a fun birthday and a memorable holiday with us, his parents, in China — his home for 5 years. 

E. is on the spectrum and less than six months ago, his OT reported he has low muscle tone. Although the biggest problem is on his fine motor skills,  he still can’t throw a ball that far nor kick a ball hard. My husband bought him two bikes, one in the Philippines where E. goes to school now, and one for here when he is on vacation. He had not really learned to pedal before coming here in January, and when my husband saw him ride his bike for the first time, he thought it would take E. at least six months to really learn. 

But I took E. biking everyday while my husband was at work. And when weekend came and he saw E. riding his bike effortlessly, there was such a proud and  happy look on my husband’s face that made me wish I had taken a photo of it. It was just priceless. 

My husband has always been pessimistic and believes it will take our son forever to learn anything. In a way it is good because he works hard and always thinks of ways to help E. I am the exact opposite.  I always believe E. is capable of learning, and I get frustrated easily when he doesn’t learn things quickly. But whether slowly or quickly, what he does learn always makes us as happy as if we’ve won lottery. Lol. Yeah. We are that easy to please. 

E. learned how to ride a bike during this winter break. Against all odds. (Weekly Photo Challenge)