Your sweet smile, laughter —
Who knows why? I hope to see
What you see — someday.
My son has a very infectious smile and laughter. Most of the time though, we don’t know what makes him smile or laugh. We are just happy to see him happy.
Sometimes he makes me say, “dinosaur” and then, “roar!” And that’s enough to make him smile as he walks away from me.
If only our joys could be as simple.
The other day, I got a message from Ahmed asking if I could help promote the comic book he created which features a superhero with Autism. This project aims to spread awareness about Autism. It’s called The Epics of Enkidu. You can click the link to learn more about the project.
A once selfish soul
Wished death. But you came — your life,
This love — elixir!
My last post wasn’t very optimistic, so despite my busy schedule, I am determined to write another one just to do my share of encouraging anyone who reads this, to have hope and to always look forward to seeing the light at the end of the tunnel; and more importantly, to cherish this time when you CAN stay at home and prepare your meals and/or sleep in instead of rushing to work without breakfast.
I, too, cherish this time when I can be with my son for a much longer time — we’ve been together since December 23rd when I came home, and then we left for China and stayed there for a little over 2 weeks, and then came back home on the 11th of January. My flight was cancelled three times; I rebooked 3 times. Finally a couple of days ago, I just asked for a refund.
With the “community quarantine” order in our city, classes have been cancelled; malls have been closed; public transportation, suspended. Thankfully, being at home all day has not really affected my 9-year old son that much. He has not gone to school or to his occupational and speech therapies for almost a month now, but simply having all of us at home — me, my two sisters and my 17-year-old nephew — is enough to make him happy. He does speaking, reading and writing activities with my sister, and PE activities with my nephew. Having my sisters and nephew at home allows me to do my online teaching for the university. Though I am way busier now than if I were back in China teaching in a classroom, I am grateful for the time I get to spend with my son and be able to contribute to the progress he makes by reading to him, talking and playing with him.
This is not the first pandemic the world has seen, and it probably wouldn’t be the last. But humanity survived previous pandemics when they did not have as much means to fight the enemy as we do now with advances in science and technology; when they did not have as easy a means to share information as we do now. I don’t think it is a false hope that we will overcome this one.
So believe that things will be better because they will. And in the meantime, focus on the many things you can do while stuck at home — because if you really look, you’ll find there are many tasks just waiting to be done that you have not been able to do because you had to go to work. Now is the time.
May you always find a reason to be hopeful and grateful.
My son was only 5 months old when we took a 1-hour and 20-minute flight to Manila and then a 2-hour international flight. I don’t remember him ever crying on the plane.
For the next five years, we flew an average of 8 flights a year, and though there were a couple of times he did not want to sit during takeoff or landing, most of the time he behaved himself well. The bigger he is getting though, the more worried I become about travelling with him because of how he behaves, not in the plane, but in the airport where he loves running around. But so far, for the past 9 years, I have always been grateful at the end of each trip that both of us made it to our destination safe and sound.
Going through security check
I can’t remember what year the pat down at the airport that we often go through started, but when it did my son who, back then (ages 4-7) was easily scared by strangers who tried to touch him, would scream and try to run when an officer approached him. A couple of times, a supervising officer yelled at me to hold my son and calm him down even after I explained that he was autistic. That was 4 or 5 years ago, and the officers doing the security check have since become more understanding and crouch down to my son’s eye level and do the check while I rhythmically say “pat, pat, pat, pat” with him. Whew.
In December last year, we took a train to another city and also took the subway several times which meant going through security checks several times. By the time we had to take a flight home, he had gotten so used to the pat down that it didn’t bother him anymore.
Practice makes perfect.
Gadgets and toys
Unless he is very sleepy or very tired, my son would never sleep while traveling. He likes being in a car, train, bus or plane and look outside the window, singing. But if there is nothing interesting to see, then that’s when he asks for the iPad. I always make sure the gadgets are fully charged whenever we travel because some planes still do not have power outlets/USB ports in the seats.
My son always needs to have something in his hands to play with and always wants to be chewing or biting something. He started biting his hands and fingers about a year ago, so we bought him chewy tubes which have been a blessing. Fidget spinners have also been a huge help in keeping his hands busy.
These three things I never forget to bring when I travel with my son: iPad, fidget spinner and Chewy Tubes.
Each child on the spectrum has his/her own specific needs, and perhaps your child does not need a fidget spinner or a chewy tube, but the point is, apart from packing food, always remember to pack something to keep your child occupied. Traveling with a child on the spectrum does not have to be stressful, and it is good to let them experience traveling as often as possible so they will get used to it. The only way they will learn to cope with the difficulties of traveling is by actually doing it. It may be stressful for the family at first, but in time, the child will learn. It needs a lot of patience, but things will be better.
Experience is key.
Keeping the child at home to avoid embarrassment is not helping anyone, especially the child with special needs.
This is my son’s latest “abstract painting.” When I woke up the morning after he painted this, I thought it looked like a forest is burning, so now I call it “Burning Forest.”
I honestly don’t think he had a forest in mind. As usual he was just playing with the brush. But my husband and I were quite happy with the result and now it’s hanging on our wall.
In the midst of all
This life’s hustle and bustle —
Silence from within.
After spending a couple of hours marking papers in McDonald’s (I can’t work at home as I’m always tempted to do something else like doing laundry instead of marking papers!) I went to my favorite noodles shop which was noisy as it was lunch time. Traditional Chinese music blaring from the speakers, a group of young women at a table behind me talking loudly, buses, cars and motorcycles driving past, some honking — so much activity and noise, loud noise.
But as soon as I started thinking of the issue that I’ve spent months thinking about — all those sounds went away. My eyes were only perceiving the movements not quite different from a boring, black-and-white silent movie.
I was figuratively alone in a figuratively quiet but in reality very noisy place.
This made me think of most people’s capacity to tune out noise or to tolerate minor irritants if they truly want to and try. I am saying most people because I believe most of us actually have this capacity to do so, but perhaps there are many who just refuse to even try. And of course there are those who have some sensory or emotion regulation problems who literally cannot stand certain irritants (like my autistic son who does not mind loud music but cries and gets angry when he hears other children crying!)
I have heard and read numerous accounts of people complaining about babies crying during a flight, especially a long haul one. Some reactions and suggestions offered I find quite unhelpful and extremely unsympathetic. I understand that there are parents (or grandparents!) accompanying children on a flight who may not be bothered by the child’s crying and do not care that other passengers are bothered by it. I honestly think these people are in the minority though. Most parents or caregivers on the flights I’ve been on (and I fly several times a year) do try to get the child to be quiet. But yes, there are those who don’t, and their indifference is more annoying than the child’s behavior.
As I said, I have read reactions and comments that are quite unhelpful or are extremely unsympathetic to parents who do try their best to calm down their child (and I believe they do because, let’s be honest, no sane parent loves to hear his/her child cry or be noisy.) Some people said: babies should not be allowed on a flight. This is very unhelpful because these people who complain do not know why the family are traveling. One never knows unless one asks why somebody is traveling — maybe for a holiday, or maybe to see a doctor. But one doesn’t even have to know — everyone has the right to fly and they are paying for it like everyone else.
I have taken several flights with my son, and thankfully he has always behaved himself (we have 2 flights coming I hope I don’t jinx them!) Even as a baby (at 5 months was when he had his first flight), he never cried. But also as a parent, I have always prepared for our flights — toys and gadgets to keep him occupied (I am also lucky that my flights with him are no longer than 2 hours.) However there are babies and young children who are really bothered by ear pressure during flight and parents who do not know how to deal with it. (click here for Tips) When I travel domestically, I usually say something to the parents (fellow Filipinos), “Maybe baby needs his bottle or pacifier?” but in international flights, I tend to keep quiet as the culture is, “Mind your own business.”
There are misbehaving children with parents who let them be and there are babies who cry whose parents just let them be. But there are lots of good parents who do try their best and babies who, for whatever reason, just cry! I hope we can be more sympathetic. We were all babies once — were we always so angelic?
So going back to my main idea — we are capable of tuning out noise or tolerating minor irritants. We surely can if we truly want to and just try. We do not even need noise-cancelling headsets to do this. To prove this, pay attention to how you sometimes tune out your best friend when he’s going on and on about something you’ve already heard a thousand times. That easy.
Patti’s chosen theme this week is “Abstract.” And I’m taking that literally by posting pictures of my then 7-year old autistic son’s watercolor “painting.”
I have no idea what he was thinking about when he played with the brush, but I treasure these literally abstract exercises of my minimally verbal son.
The one above just got a title, “Raining Down.” Thanks to Ann-Christine at Leya. 😁
There are two places my 8-year old son who has Autism, loves to be at — the airport and the beach. But whereas at the airport he likes to walk or run around, he is most calm sitting on the beach. At one beach we went to early this year, he and his dad sat watching the sunset for over an hour.
I was at first hesitant to post candid photos of my son, but then I realize most of these photos were taken with his back to the camera.
I have used these photos before in my posts about him and Autism, so these are “recycled” photos, but definitely candid. 😉
Last week I ran into a co-worker who had not seen me in a while, and she asked me how I was doing and how my son was doing. She knows my son is on the spectrum, so when she asked me about my son, I excitedly told her I would show her something that shows my son’s progress. And she looked so eager waiting to see a picture of my son.
But when she finally saw what I had wanted to show her — the picture above, I saw the dramatic change in her facial expression — one of pity, which just made me laugh saying, “I know my happiness is too simple!”
At 8 years old, my son just learned how to trace the first letter of his name, E. I was ecstatic. My sisters were so excited. My husband was so moved. This picture of his first letter E kept me smiling for days. And when my co-worker saw me that day, I was still “high” from that letter E! LOL.
I fully understand why my co-worker felt sorry for me — she then talked about how there are good schools in other countries — but we see the progress in my son’s slow progress. And every progress is something that brings us happiness and are thankful for.
My son is fortunate to have teachers and therapists who have so much patience to teach him. He is blessed to have my sisters and my nephews who love him for who and what he is. And we are all blessed to have him who has taught us that happiness does not have to come from big, expensive stuff.
Happiness can come from a simple drawing of a letter E. ❤️
May you find happiness in simple things.
My husband and I have the weirdest conversations between a married couple simply because I am weird. One of the things we talked about a couple of years ago was what would happen WHEN I die (because I have to die first, and I would never forgive him if he dies before me! To which he agrees. He says he would like to be able to give me a proper funeral. This I truly appreciate.)
I told him that at my funeral, he can look around and see who among my friends he can marry. Well, this was too weird for him. (But perhaps he was just thinking my friends would be too old for him!)
When I told my friends and sisters about this they thought I was crazy.
Maybe. But my point is, I would like my husband to be happy when I leave. My only condition is that whoever that woman who can make him happy is, should accept my son like he is her son, because I want my son to be happy too.
Unlike the characters in the Disney movie, “Coco” who feel the need to be remembered — I don’t feel the need to be remembered. It would be nice to be remembered, but I am not sentimental about it. What matters most to me is number 1: my autistic son is taken care of until such time he can look after himself; and number 2: that the people I love will go on to live happy, healthy lives after I’m gone.
The day before my mother died, I saw the look on her face change when my then 13-year-old nephew who is my mom’s first grandchild, entered the room. Her eyes lit up, and there was a fondness for my nephew that was so visible that I, her youngest child, felt a little jealous even though I was already 44! We all knew she had not wanted to leave yet because she was worried about him. We gave her the assurance that we all would take care of each other.
I have tried to keep that promise.
I hope that when it’s my turn to go, I would get the same promise that my son will be taken care of. And that they will keep it.
Sonnet 71 by William Shakespeare
No longer mourn for me when I am dead
Than you shall hear the surly sullen bell
Give warning to the world that I am fled
From this vile world with vilest worms to dwell:
Nay, if you read this line, remember not
The hand that writ it, for I love you so,
That I in your sweet thoughts would be forgot,
If thinking on me then should make you woe.
O! if, I say, you look upon this verse,
When I perhaps compounded am with clay,
Do not so much as my poor name rehearse;
But let your love even with my life decay;
Lest the wise world should look into your moan,
And mock you with me after I am gone.
My son is going to be 9 soon, but in his last appointment with his developmental pediatrician, he was assessed as having the language ability of a 3-year old.
Over the years, I have read articles on how to teach a minimally verbal child like him speak; he has had several tutors, special education teachers and therapists. Though he has progressed much in other areas, cognition and language are areas where he has made slow progress. Yet, I am still very hopeful that one day he will speak. What I keep reminding myself is what I heard from one speech-language pathologist a couple of years ago — for some kids, it takes a longer time for speech to come out. But as parents, we should keep “inputting data” (language) into their brains. Just because they are not speaking does not mean we have to stop teaching them to speak
And this idea is what gives me hope.
For the first five years of his life, I read to my son almost every night and that led to him being able to recite about 20 of his books from cover to cover. I started reading Beatrix Potter’s Jemima Puddleduck to him when he was not even a year old, and he loved the sound of — I’m not sure if it’s my voice, or the flow of the words, or both but he made me read it over and over again until he memorized the whole book. I would intentionally leave out a sentence, and he would say it to me over and over again until I said the line myself!
Being autistic with sensory issues, E. has a habit of chewing on things that he likes. And because he loved his books then, he chewed on all of them. Before that Jemima Puddleduck book became badly damaged from being chewed on, my husband came up with the idea of scanning it so our son could view it on the computer. But it wasn’t the same for E. . And that book was forgotten for a couple of years.
When our living arrangement changed, I felt bad not being able to read to him at night. Then one day I saw the scanned pages of Jemima Puddleduck and decided to make a read-aloud video of it. When I finally played that video for him, the smile on his face when he saw those pictures and heard my voice reading the book was more precious than a pat on the back anyone has ever given me in my whole life!
I have since made read-aloud videos of his other books, and my sister tells me they can tell when he’s missing me as he would ask to watch those videos instead of his favorite movies.
My husband and I had big dreams for our son — we had hoped he would get a much better education than we did and be interested in learning. We were eager to let him study what we, in our youth, were unable to because our parents couldn’t afford them. We had dreams for him to fulfil OUR dreams.
But life happens.
Those dreams came crashing down with his diagnosis. I honestly do not think any parent can say they left the doctor’s office thankful for the ASD diagnosis of their children. An adult person with ASD can probably be thankful for the diagnosis as it leads to an understanding of oneself. But for a parent of a child with ASD , it is different, especially when that child is non-verbal, and E. at 2 years old was still not talking. So yes, it was devastating.
But as parents, we can only be resilient. Though it took my husband a few weeks to get out of his depression, once he did, he accepted the challenge of raising a son with autism.
Now we have a new dream for our son, a much simpler and more practical one: for E. to live independently and happily.
But to get there, he has to have better language ability. And I have not only hope, but also faith, that that day will come. That with the help of his teachers and therapists, who teach him patiently and his family who love him unconditionally, he will be able to use the language that has been stored in his brain all these years. That my son will be talking to me non-stop; and I promise to God, when that day comes, I will not complain that he won’t stop talking!
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.
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! 💕
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.
“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.
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
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.
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. 💕
After a red-eye flight, a 3-hour layover and another hour and a half flight, I was met at the airport by my sisters, nephew and my son. We then headed to the beach because I wanted to walk along the beach with my son. He loves the water, but he is always afraid to try anything at any new place. This was our first time at this resort.
As always, at first he refused to step into the water when I asked him to. So, I did the routine of me stepping into it and showing him it was fun to get the feet wet. After a few minutes, he signaled for me to go back to where he was standing with my sister, and as soon as I reached out my hand, he clutched it and stepped forward.
After that, he didn’t want to leave anymore.
It was cloudy, but it was still a beautiful Saturday morning with the sound of the waves, the cool breeze and the warm sea water. And the love of my life clutching my hand.
Hope you have a lovely weekend, 💕
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.
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.
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! 💕
Daily Prompt: Wheel
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,
But you bounced back.
And continue to fight
For this little boy
We brought to this world.
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!
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!
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!
(The title is from J.D. Salinger’s Catcher in the Rye)
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
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)
You are special to me
Not in the same way
The world calls you special
Because you can’t speak
The way kids your age do,
You can’t throw a ball
Like most 5-year olds do
You can’t even catch one
Though we’ve tried to teach you
Over and over again.
You are special to me
But not in the same way
The world sees you
Because you flap your hands
Or jump a thousand times on the trampoline
Or recite your books from cover to cover
Instead of talking with people.
No, you’re special to me
Because I see what the world can’t see
How sweet your smile is
When I finish a line that you start to recite;
When you leave your toys
To run to me just to give me a hug;
When you snuggle close to me
Because you want to be kissed;
When you ask me to sing
Your favorite song
Or read your favorite book.
You are special to me
Not only for who or what you are,
But also because, in your simplicity,
You have taught me —
Patience and understanding,
Humility and gratitude.
And most all you taught me
Love that expects nothing in return
Save for that sweet, little smile
You give to me alone.
Thank you, Son.
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 makes 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。
Coffee is my non-human best friend. It gave me energy when I most needed it after my son was born. Though sleep-deprived, I still needed to function efficiently and coffee made it possible to stay awake and teach at eight in the morning, come home and feed the baby, and do housework, and prepare lessons, etc. I am forever grateful to the person that invented coffee drink.
My son used to have laughing fits even when there’s nothing visibly funny, especially after having his then favorite breakfast of peanut butter on toast. Several people told me back then to just let it be because he’s a “happy boy.” I also witnessed how chocolate could make him unbearably hyperactive. His laughing fits and hyperactivity stopped when we put him on GF/CF diet. I am forever grateful to the person that came up with the GF/CF diet for people with ASD.
Reading about autism and diet, and books on neurology especially by Dr. Oliver Sacks, and witnessing firsthand the effects of medicine on my leukemic mother’s mind, made me wonder if we are nothing but mere slaves to every single thing that is already in or enters our body — food, medicine, bacteria, chemicals, etc.
For example, what we call personality can easily be changed, not by our will to change (that’s not easy at all), but by lesions in the brain.
In his book, An Anthropologist on Mars, Dr. Sacks wrote about Greg who, as a young man in the 60’s, rebelled against convention, took drugs to seek a “higher consciousness,” later dropped drugs to seek this “higher consciousness” in religion, namely Hare Krishna. His first year at the temple saw him as obedient, pious. Then he started losing his eyesight which the temple residents took to mean his “inner light was growing. ” Greg was also becoming more withdrawn which again, people interpreted as becoming “enlightened.” Long story short, it was only when his parents insisted on taking him to the doctor that it was discovered that Greg had a growing tumor in his brain.
“Brain imaging had shown an enormous midline tumor, destroying the pituitary gland and the adjacent optic chiasm and tracts and extending on both sides into the frontal lobes. It also reached backward to the temporal lobes, and downward to the diencephalon, or forebrain. At surgery, the tumor was found to be benign, a meningioma—but it had swollen to the size of a small grapefruit or orange, and though the surgeons were able to remove it almost entirely, they could not undo the damage it had already done.”
This brain damage radically changed Greg’s personality. In the hospital “his seeming serenity (actually blandness), gave him an appearance of innocence and wisdom combined, gave him a special status on the ward, ambiguous but respected, a Holy Fool.”
Many other patients written about in this book showed major changes in their personalities after suffering from brain injury.
This, then, made me wonder if we have any independent will of our own at all? If the decisions that we make are truly our own, or are mere results of these little things in our body that ultimately feed our brain and change the way we think, speak and behave.
Alcohol and drugs sure can influence the way we think or behave. Children with ASD behave differently and sense things differently when they are overstimulated or not. Neurotypical people take all kinds of medication or drinks to make them feel better or think more clearly.
I used to think that the expression “You are what you eat” only referred to physical health. Now I’m beginning to think that that applies to our mental health as well.
(This is just a draft of what I really wanted to write. I’ll rewrite this when I have more time to be alone and think!)
It’s New Year’s Eve, and I am thinking about new year’s resolutions which I have had the habit of making every year for the last 20 years or so. But this year, influenced by my new-found fascination with the human mind/brain, I am thinking whether I should make them.
This is going to be about my new-found interest in the brain then, because “out of the abundance of the heart, the mouth speaks” or the fingers type.
Several factors led me to my current interest, the most important of which is my son’s condition. Elijah has ASD (autism spectrum disorder). He was diagnosed when he was 2, now he is almost 5. Like some other autistic children I know of, he would laugh hysterically for no reason (this has since lessened to a considerable degree after we put him on the GFCF diet), or cry for no apparent reason, and wake up in the middle of the night screaming and kicking (this totally, well, hopefully it’s totally, came to an end after we put him on the GFCF diet).
Wanting to understand what Eli is going through, what goes on in his head when he’s laughing or crying (he can express in sentences what he wants but nothing else), I decided to read more about the brain, and my interest led me to my discovery of the great mind of Dr. Oliver Sacks. The great thing about having coffee with knowledgeable friends is you can talk about subjects that both of you really enjoy discussing, and you get not only a good feeling about being understood but also the satisfaction that you learned something valuable. I mention this because if not for my friend’s enthusiastic introduction of The Man Who Mistook His Wife for a Hat, I would have kept postponing reading Oliver Sacks’ book, and I would have stayed the same person I was three months ago.
This book is one of the four books I consider to have the major influence in shaping the ME I am today (excluding the Bible, that is). The other three are Dostoevsky’s The Brothers Karamazov, Kafka’s Metamorphosis, Carnegie’s How to Win Friends and Influence People (Huh? But yes.) The Man Who Mistook His Wife for a Hat is a collection of case histories of patients that Dr. Sacks saw in his capacity as a neurologist. I don’t think I will list him as one of my favorite writers, but he will always be one of my favorite people in the world. I say that because literature has always been my preferred reading material, and my favorite authors have always been literary writers, but I find Dr. Sacks’ writings (I just started reading A Leg to Stand On) though they are case histories, were written with understanding and compassion. The patients were written about not as subjects of an examination, but as real human beings with feelings — joy, sadness, fear, anger. Dr. Sacks made me see that there is more to a human being than what they say or what they do. For some, though they look normal to others, they may not have control over their language or actions.
There are 20 stories in this book but I will only mention four that really made an impact on me.
The first is the patient who is the source of the title of this book. He literally mistook his wife for a hat and grabbed her hair and pulled, thinking his wife’s head was his hat. He only realized it wasn’t when his wife made a sound. He could not recognize people by their faces, but by the sound of their voice. He mistook people for objects, and objects for people,addressing door knobs and heads of hydrants like they were people. I know it sounds like something you would see in a slapstick comedy, and perhaps in reality, we would still find this funny, but then when you realize that a person with this kind of neurological disorder has to deal with this every single day of his life, and could very well be the subject of mockery or ridicule, then it ceases to be funny. The patient was fortunate that he was a respected musician, whose gift for music was unaffected by this disorder.
What others may see as quirkiness is actually a result of an injury or damage in the brain. The person is not trying to be funny. He has no control over it.
The second case that I find fascinating is the man who could not recognize his own leg as being his. He woke up, saw a leg on top of his own that he thought somebody had put there as a joke, and he threw it away, but as he did he fell off his bed. Then he thought, for some reason that that leg had possessed his own leg. Most people would just say he’s mad. But this kind of neurological disorder can happen to anybody, to “well-balanced people, who had shown no hints of any madness before.” This disorder is supposedly associated with lesions of the brain.
No, the man was not possessed by an evil spirit. There was a large tumor in his brain which damaged his thinking faculty.
The third patient is called Martin. Here I would like to quote Dr. Sacks, as I don’t think I can describe Martin and his condition as well as he did:
As a child, Martin had “meningitis which caused retardation, impulsiveness, seizures, and some spasticity on one side. He had very limited schooling, but a remarkable musical education — his father was a famous singer at the Met.
” … [He] had an amazing musical memory — ‘I know more than 2,000 operas,’ he told me on one occasion — although he had never learned or been able to read music….He had always depended on his extraordinary ear, his power to retain an opera or an oratorio after a single hearing. Unfortunately his voice was not up to his ear — being tuneful, but gruff, with some spastic dysphonia….His father transmitted not only his musical genes, but his own great love for music, in the intimacy of a father-son relationship, and perhaps the specially tender relation of a parent to a retarded child. Martin– slow, clumsy — was loved by his father, and passionately loved by him in return; and their love was cemented by their shared love for music.”
Martin could not keep a job because he was not “normal,” strange. Yet when it came to music, he was known as a “walking encyclopedia,” and when he participated in musical events no one would ever think there was anything strange about this man.
If his brain had not been damaged, would Martin possibly have a happy, comfortable life? Would he have retained his musical gifts? Or were his talents a product of the brain damage?
Finally there was the 19-year old Indian girl who was diagnosed with a brain tumor of low malignancy when she was seven, and which recurred more malignantly in her 18th year. As her tumor grew and moved closer to her temporal lobe, her seizures became more “frequent and stranger.”
As her condition grew worse, the hospital staff “would see her rapt, as if in a trance, her eyes sometimes closed, sometimes open but unseeing, and always a faint, mysterious smile on her face. If anyone approached her, or asked her something, as the nurses had to do, she would respond at once, lucidly and courteously, but there was, even among the most down-to-earth staff, a feeling that she was in another world, and that we should not interrupt her. I shared this feeling and, though curious, was reluctant to probe. Once, just once, I said, ‘Bhagawhandi, what is happening?’
‘I am dying,’ she answered. ‘I am going home. I am going back where I came from — you might call it my return.”
A little over a week later, she passed on.
Reading this part of the book reminded me of the many dying people I personally of, who talked about their brothers or sisters or nephews who had gone on before them, waiting for them, bidding them to come and join them.
These stories and the rest of the 16 cases in the book show us how the brain controls not only our body, our actions, our words, but also our past, present and future.
This leads me to one of my important questions, which at first may seem philosophical, but actually is not: Do we have free will?
But I will save that for my next musing.
So I guess for now, because I have not yet answered my question on free will, I can still make my New Year’s resolutions:
1. Read more.
2. Think more.
3. Write more.
4. Save money.
5. Be a good person.
May your 2016 be filled with peace, love and happiness!
Happy New Year!!
I took this picture morning of Christmas Eve while I was walking at the park. I’ve always loved the melancholic sound of the erhu, so when I heard it, I walked towards where the sound was coming from and saw this old man facing the pagoda as if he was playing for the one for whom it was built. Fortunately for me, he turned around and, click! I took a photo.
The ever sentimental me imagined the old man was probably playing for his grandfather or great grandfather, and I thought how nice it would be to be remembered the same way by the ones you leave behind. (Of course the practical and realistic part of me has something else to say.)
That night, Christmas Eve, my husband and our friends and I talked about death instead of having dessert after dinner. It came about after our friend complained about being over 60 and feeling that he was getting really close to the end. I just laughed at him saying 60 wasn’t old, and I remembered crying when my father turned 60 as I thought he was going to die soon, but he lived to be 81.
It was not the first time we talked about death instead of having dessert. I remember another time when I thought aloud about dying and nobody would be coming to my funeral because I have not lived in my hometown for a long time, and my friends have also left. My husband, who is introverted, felt the same way. And so did our friend who was in his early 50’s then.
But really, does it matter? Would we even know?
I would like to think my father is aware that we have not forgotten him, that I have not forgotten him. That I light candles for him on important dates, and I smoke a cigarette on his birthday and on All Soul’s Day, that I visit his grave whenever I go home and again before I leave. I do all these because I want to, because I like remembering him, and I want him to be happy, just in case he is aware of these things.
My husband once asked me if I thought our son (this was before our son was diagnosed with ASD) would ever visit his (my husband’s) grave in his hometown in the north of China on Tomb-sweeping Day. He was a little shocked by my blunt and totally unsympathetic reply: “Are you crazy? Why would you burden your son to travel every year just to visit your grave? You would not even be there anymore!” I did apologize for the bluntness, but he admitted it was a burden.
I don’t want to be buried. I want to be cremated, and my ashes scattered in the sea in my hometown or any sea really. Or, if Eli, by that time is already capable of feeling love and loss like typical people do, perhaps he can keep some for himself that he can carry around with him wherever he goes. And if the dead me sees that, I would be truly happy.
I think we all want, desire to be remembered by people we love. But when we’re gone, it doesn’t really matter if they do or they don’t, does it?
Remembering is only for the good of the living, not of the dead.
At the age of 17 when the thought of boys and dating engrossed my classmates (all three of them), I first heard and truly understood the meaning of the statement: Desire causes suffering, in Professor Ortega’s Asian Literature class. Prior to that the only thing I knew of Buddhism was that Buddha was a big, overweight, hairless man who happily let children climb all over him. There was a hole on his head where one could put coins. Yes, a ceramic Buddha was a popular coin bank when I was just a child. (I went to a Catholic high school and discussions about other religions were not encouraged nor tolerated. And I was raised by devout Catholics who were both choir members in the church. Hence, 17, a little late. )
I no longer remember the story that we were discussing in class then, but my introduction to the idea that desire causes suffering was a catalyst in my life. It has since been ingrained in my brain and has spared me from what could have been disastrous consequences of my giving in to unreasonable desires. The idea taught me to to be content with whatever I have, no matter how little.
Realizing that it was not easy to let go of any kind of desire, I searched for ways to make it feasible. I read, and as happens when sometimes one searches for something, one discovers something else, I came across Stoicism–indifference to pleasure or pain, another interesting thought. Serendipity. I tried to practice it, of course not realizing right away that I was just pretending to be apathetic. Perhaps it is impossible for literature majors to be stoic; empathy is hard-wired into our consciousness.
Later I realized that my attempts at stoicism was in itself a desire, and because I could not be successfully stoic, I was disappointed with myself and suffered.
Then came the acceptance that it was impossible for me, an ordinary mortal, to be without desires. However (yes, there was hope), I thought I could limit my desires.
“Simplify. Simplify. Simplify.” Thoreau could not have been more thorough in his advice.
I never wanted to get married. I thought, what’s the point? We are born alone. We die alone. But I got married, the reason I will not write about, but suffice it to say, I never did want to get married. The comedy of how I ended up married will perhaps be written about years from now. By me, of course.
I never wanted a child. An erstwhile friend once said to me he would never forget how I told him pregnant women looked like victims. I wish he had seen me pregnant. We would have had a good laugh about it.
I got pregnant because I had to fulfill a promise to my husband that I would give him a child. I tried to postpone it a couple of years, hoping it would be too late; but I was meant to be pregnant. I had tried to convince my husband that I should be enough for him. He and our marriage were certainly enough for me. I did not want anything else. I failed of course, especially because he is Chinese. If you have ever come to China, you will know what this means.
Now I am a mother to a three-year old boy who has ASD (autism spectrum disorder).
When Eli was just born, my husband had big dreams for him: study at Harvard, marry a beautiful Norwegian girl (he read somewhere that Norwegian girls are the prettiest in the world.) He dreamed of living in a big house with his son who would have a beautiful Norwegian wife and equally beautiful children. That’s a huge dream.
I chose the name Elijah for my son because I had hoped my son would be a wise man, a prophet or a philosopher. I had also in mind how God had sent birds to feed Elijah while he was hiding from those who wanted to kill him. I hoped for my son to be well looked after even when I was no longer around. I promised God I would make my son serve Him. (But a part of me also wanted him to be a spy like Jack Bauer. Crazy, I know. Dual personality.)
As you can see my husband and I had very different dreams for our son. I did have a less idealistic dream, a short-term one, that I kept repeating to my husband whenever we went or passed by the nearest McDonald’s. I used to say to him I looked forward to Eli turning three or four and hanging out with me at McD, eating ice cream. As simple as that. There was no dream of him going to Harvard or marrying a beautiful girl (in fact, I always said I would not want to be around long enough to see him have a girlfriend. I would die of jealousy.) I thought he could go to the same state university I went to in my home country. (My best friend used to tell me I had a small brain with very small dreams. Well…)
Fast forward to when my suspicions about Eli’s condition were confirmed, I thought, “If there is a god, then he is probably having a good laugh about this. He is truly one cruel god.” I never wanted a child because I did not want responsibility. Yet, look what I got. One HUGE responsibility.
But god or no god, I brought this child into this world, he is MY responsibility.
I wept for my son and for the difficult life he has ahead of him; I wept for my husband whose Harvard dreams for my son vanished and was replaced by; “I just hope for my son not to end up begging in the streets.”
If there is one good thing that came out of all this misery, it is that my husband became more realistic about his dreams for my son. In fact they are no longer dreams but weekly or monthly goals for Eli to accomplish. The pain of the reality that we have an autistic son will never go away, but it can be dulled by the the slow but steady progress Eli is making.
All parents wish/hope/want/desire for their children to have a happy, comfortable life. That desire can cause suffering, but it is the kind of suffering that a parent would willingly bear for the sake of the child he/she brought into this world.
It is human nature to desire; and it is inevitable for humans to suffer. But we can minimize the disappointment, the suffering, by not desiring too much, nor wanting too much, nor expecting too much from the ones we care about.
Last night when my husband and I were eating a McD sundae, overacting our enjoyment of the ice cream to make Eli want to eat as well, Eli looked at me and smiled. I prompted him by asking, “Eli, what do you want?” And he replied, “I want ice cream.”
My dream is on its way to becoming a reality.