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. 🙂  

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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.

 

Daily Prompt: Wheel

This is a ship music box that a friend gave me about ten years ago before he left China. It had been sitting in my office for years until one day a year ago, I brought my son to the office, and not finding anything else that interested him, I gave him this. It plays Fur Elise (Mozart never fails to calm him down) as the wheel goes round, and that was all that was needed to keep him in one place. So then I brought it home. 

I never consciously taught my son to call it a music box. He knows the words “ship” and “boat,” but somehow he did not associate those words with this thing. One day, though, when he wanted to play with this but he couldn’t reach it, he grabbed my hand to try to get me to reach for it saying, “There!” And I said, “What is it? What do you want?” And he thought and later blurted, “Ferris wheel!” 

That wheel DOES look like a Ferris wheel!

I corrected him, but that got me thinking about how we perceive things. I guess for him because it’s only the wheel that moves and it makes a sound as it does, that was all he could see. He couldn’t really see the ship. 

Have a lovely Wednesday! 💕
T. 
Daily Prompt: Wheel 

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.