Okasaneko
(http://blog.hellokitty.com/okasaneko)
A Tubby Tabby, Three Konekos, and a Life with Hello Kitty and Autism

Archive for the 'Autism' Category

Walk With Angels

Friday, January 16th, 2009

autism-angel

Considering the number of kilometers I’ve covered since I started my regimen of walking/running, I feel mighty prepared to tackle this year’s Autism Walk. Last year, I was huffing and puffing in the morning sun, flushed pink from running and taking pictures at the same time. I had to pause and catch my breath more than a few times, which only goes to show the very poor state of fitness that I was in last year.

Unfortunately, despite all my preparations, I will not be able to join this year’s Autism Walk. Just a case of poor scheduling, (and yes, some midlife memory crisis) but I inadvertently scheduled another thing on the very day the walk was slated. (*hits head with a brick* ~ do not try this at home!) While I am sorry to miss the excitement of the day, I am even sorrier that I would have to shelve my new shirt ideas for this year. Still,  Team Alphonse may not be around physically, but my family and I (and all those who are invested in Alphonse) will be there in spirit.

If you know anyone with autism, if you live with and love anyone who has autism, if you teach or work with someone with autism, please stand up and be counted. Walk for them. This walk is all about numbers and how we, as a united force, can bring about change for our children and loved ones’ lives.

autism-angel-merch

And oops, a shameless plug for Autism Society Philippines: (pictures borrowed from ASP newsletter) Autism Walk merchandise (official green ASP t-shirts and baller bands) are available at the ASP office (call 926-6941). When you purchase any of these items, you enable the ASP to work another day and reach more people.

To ASP, and to my friends in the autism community, I wish you mild sun and cool winds on Sunday, and lots of kind hearts to brighten the day. God bless!

What Kind Of World Do We Want?

Tuesday, November 11th, 2008

This video was created by Alex as a gift for Alphonse’s 14th birthday last November 3. We previewed this video to relatives on our family celebration last Sunday, November 9. Alex worked over this after classes, scanning old pictures, writing and rewriting the text, and threading them to become a story. I hope you like this as much as we do. My boys make me very proud.

“Take Me, I’ll Follow”

Thursday, October 16th, 2008

Some days, it’s hard to stop writing about everything going in on one’s life. And yet other days, there are things and events that are so poignant that words don’t do them justice, however much you try. This is one such time.

These last two weeks, as Alphonse recuperated from his illness, he has been less active and more prone to lying down silently, deep in thought. His two hour lunch, which also used to be time to de-stress from his morning activities, used to be a time for play and carousing. These days, he reclines in an old sofa and listens to music on a CD player as he whiles away his few hours of rest. Sometimes, he even falls asleep, and this is new as he hasn’t taken a nap since he was seven.

We noticed the changes in him but we felt that between his illness and the colder weather, perhaps, he was simply attuned to his body’s new needs. And then, we noticed something else. His nanny uses a cellular phone/mp3 player to give him alternative choices for music (a lot of old songs and some Original Pilipino Music and) and he has taken to one particular song. When this plays, he smiles and makes a grab for the phone to put it near his ear. And once the song is done, he hands it back to her and motions for her to play it again. As a result, this song is played continuously on a loop most afternoons, the only one that never fails to make him smile. The song? “Take Me, I’ll Follow.”

I just discovered this recently, and knowing this, I wondered with amazement how it is that Alphonse can speak to us without even saying a word. (Remember, his previous favorite was “Miracle Child?”) Last night, as I read the lyrics to his favorite song, the one he asks for over and over again to be played, it dawned on me that perhaps this song expresses feelings that he can’t verbalize. And with this understanding, I started to cry, more for joy than anything else, for this son who never needed the world before. 

Read the lyrics below and pretend it is Alphonse speaking:

Take Me, I’ll Follow

Tired of feeling all by myself
Being so different
From everyone else
Somehow you knew
I needed your help
Be my friend forever
I never found
My star in the night
Feeling my dream was
Far from my sight
You came along and
I saw the light
We’ll be friends forever
CHORUS:
I can’t face the
Thought of you leaving
So take me along
I swear I’ll be strong
(If/when) you take me
Wherever you go
I wanna learn the things
That you know
Now that you
Made me believe
I want you to take me
‘Cause I long to be able
To see the things
That you see
know that whatever you do
I’ll follow you
Somebody must have
Sent you to me
What do I have
You could possibly need
All I can give is my guarantee
We’ll be friends forever
Repeat chorus
Teach me more in
Each passing hour
By your side
I know I will cover
Is it true that
You have the power
To capture this moment in time
Take me wherever you go
I wanna learn the things
That you know
Now that you made me believe
I want you to take me
‘Cause I long to be able
To see the things
That you see
Know that
Whatever you do
I’ll follow you

Cognitive Milestones

Wednesday, September 10th, 2008

This article was originally posted in HerWord.com on September 8, 2008.

A few years ago, a friend of mine rang me in the middle of the day and started screaming at the top of her voice, “He lied today. Oh, my, he has learned to lie!”

He is her nine-year old son with autism.

Apparently, he was playing hide-and-seek with his little brother that afternoon, when little brother asked “Are you in the bathroom?” Normally, he would answer a direct question with a yes or no, oblivious to the fact that his little brother was using his honest replies to tag him and get an edge in the game. That day, for some strange reason, he shouted “No!” though he was, indeed, inside the bathroom. Little brother, expecting victory on his side, ran to kitchen and asked “Are you in the kitchen?” at which time he was surprised to find his brother appear from behind him.

“No fair!” little brother cried out and tried to tell on him. Big brother just smiled delightedly.

And so, when my friend called me up that afternoon, I got caught up in all the shrieking and rejoicing, too. After all, it isn’t everyday that our children with autism get to reach a cognitive milestone.

Just last week, Alphonse reached his own cognitive milestone. For the first time in a long while, I caught a distinctive glimmer of the soul hidden behind his autism. Last week, Alphonse learned the rudiments of jealousy.

It started quite unexpectedly. My sister dropped off her infant son and his nanny here at home, asking if I minded looking after him while she worked. She had some things to finish at the hospital that day, after which she would pick up her son to go to a friend’s house. Since my house was nearer their secondary destination, she asked if he could stay a few hours here with me. “Of course,” I readily agreed, excited at the prospect of having a baby in the house. Since my next-door neighbors (my cousin and her two gorgeous children) left early this year, I had missed having little visitors come to the house to eat and play. Baby J was a little too young for rambunctious play, but he’s been very giggly these last few weeks, and he does give out the wettest, slurpiest kisses of all my nephews and nieces.

Baby J was playing quietly on my bed with the boys’ old toys when Alphonse came up after his morning class. I took Alphonse by the hand and re-introduced his baby cousin.

“Alphonse, this is Baby J. He is here for a visit. Do you want to say hello?” I said enthusiastically.

“Ha!” Alphonse grunted and waved reluctantly.

Then he inched away from the baby, preferring to watch from a few feet away. He looked disinterested, or so I thought, though I did catch him stealing a few glances from the side of his eyes. I asked him if he wanted something. He smiled shyly and turned away. Again, he stole a few glances at the baby and suddenly scowled a little. I was a little concerned at his reactions, so I thought to distract him from his preoccupation with the baby. I asked him to join me for lunch. I was rather surprised when he said no.

“No? Aren’t you hungry, Alphonse? Let’s go eat lunch,” I gently coaxed him.

He would not budge.

I decided to leave him in the room. Alphonse is a predictable fellow, and there are some things that we’ve all learned will work with him. And this is one such formula: when I leave a room, he follows. That particular moment, he stayed behind, lingering and looking at the baby intently.

Then, and this is according to Alphonse’s nanny, he made his way to the bed, sidled up close to the baby, and gently took his baby toys from the bed, away from Baby J. Smiling, he put them as far away as possible, almost near the floor. Only when he was assured that the baby would not be able to reach his toys did his face betray the first signs of a smile.

When his nanny rushed down to tell me about it, I could not believe it at first. Alphonse has never felt territorial with his toys or any of his possessions (okay, except for food); most of the time, he would not care less who touches or plays with them. But that day, he didn’t want to share at all.

In the afternoon, just before his class, he went back to the bedroom again, and upon seeing the baby beside me on the bed, slowly crept up and gingerly inserted himself between the baby and myself. He flashed a smile of triumph, as if to say “I’ve claimed my bed and my mother,” while baby J mewled softly beside him. He also kept asking for kisses and would not leave my side, despite his nanny’s reminders that it was time to study anew. I had to escort him back to his study room.

When my sister fetched Baby J, Alphonse was visibly relieved. In the following days, he seemed a little anxious, although we simply ascribed it to the minor changes in his routine. Unexpected visitors always seem to ruin his rhythm.

A few days later, however, he was back to his jovial, relaxed self. It was a good day, just one of those days when all his answers were smiling yesses, as he seems to want to please everyone.

“Are you a good boy?” Alphonse nods to say yes.

“Do you like ice cream?” Yes.

“Do you want a kiss?” Yes.

“Are you happy?” Yes.

And even “Do you have body odor?” Yes. (For the record, he does not have body odor.)

So it was turning out to be one of those funny days when he says yes to all you ask, but my sister just happened to ask this question: “Do you like Baby J”

Alphonse smiled and shook his head.

“You don’t? Oh, my poor baby!” my sister cried.

Alphonse kept smiling and shaking his head. No. No. No.

My thirteen year-old son, my Alphonse, is jealous of a little baby. Oh, what a glorious day!

Autism and Kitty Love

Friday, August 1st, 2008

My son Alphonse will turn 14 in a few months (in three months, to be exact) and were he your ordinary, every day, typical kind of boy, he would not have a thing to do with Hello Kitty. His older brother, Alex, does not even set foot inside a Sanrio store, except when absolutely necessary, like when he has to buy a gift for me. (When Gift Gate used to carry Legos, Alex would ask that the Legos be brought to him by the door. The sales persons, thinking he was darned cute, would oblige. They would stand near the doorway, hold a couple of Lego boxes, and Alex would make his choice by pointing from afar. I think this will change in the near future, when he has to buy gifts for girls other than me.)

But Alphonse, well, he grew up with Hello Kitty beside him- on his bed, on his clothes, on his things- and to him, it was as natural as anything else in his little world. While A was concerned that I encouraged it a little too much, he didn’t exactly forbid it. I think as long as Alphonse was happy, he was happy too, never mind that Hello Kitty does not rank anywhere near A’s favorite things in the world.

This week, a package I ordered some months back arrived. It came from Esi, one of my friends in the Multiply social network. I knew as early as then when I asked for measurements that this would not fit me, but I had someone else in mind: Alphonse. And I was right. When he donned this on, he gave me the sweetest smile, rubbed his hands gently on the fleece surface, and hugged me tightly. Even more, when I started taking pictures of him, he posed like a world-class supermodel.

Wearing his fleece vest (from Tita Esi), with his Kitty timer (from Tita Vivi) on him and his favorite Kitty vibrating pillow (from Mama) in unprompted poses

Ah, the innocence and simple happiness of a child, one of autism’s unexpected gifts.

No Words Spoken

Friday, July 25th, 2008
Image by © Martin Meyer/zefa/Corbis
Image by © Martin Meyer/zefa/Corbis

Alphonse and I were waiting in the car last night for A who had gone to run some errands for me (I had him buy some glue sticks from the bookstore). I was reading some messages sent via SMS, quite oblivious to the giggling I was hearing from the back of the car. A few minutes later, Alphonse turned on the interior dome light, apparently to see who he was giggling with. Instinctively, I turned around to tell him off (one of his repetitive habits is switching the lights on and off) when I noticed a young boy standing beside Alphonse’s window. The boy was probably no more than ten years of age, scrawny, dressed in threadbare clothes. He was one of the street urchins who usually offer the use of their umbrellas on rainy days for a fee. Separated by the sheet of window glass, they stared at each other for a few seconds.

Then Alphonse started to giggle, as he looked expectantly at the boy for a reaction. The boy started chuckling in turn, moving his arms in the air, even jumping up and down.. This went on for a few minutes until they were both howling in laughter. After a while, the young boy waved goodbye. Alphonse waved back.  He smiled all the way home. 

Wish that making friends were always this easy.  

~0~

Speaking of friendships, I can’t begin to tell everyone how the experience of blogging has opened the world for me with renewed friendships and new ones forged. With a few strokes of the keyboard and a few clicks of the mouse, I have expanded my world beyond what I know.

Megamom shared this lovely tag with me a few weeks ago (thank you, dear friend) and she has an inspiring (and heartbreaking) story to tell that relates to the origins of this tag. I invite you all to click on the links above and read it for yourself. Sharing The Love was created by a grateful mom named Crystal, in honor of the individual who gave her one year-old son Noah a new lease in life by way of an organ donation on July 7, 2007. Noah’s new heart represents not only the best in humanity- the capacity to sacrifice even in the midst of grief- it also speaks of hope and love that we, as sentient beings, all aspire to.

The rules of this award are: SHARE THE LOVE!!! Share this award with all those blogs out there that you love. All the people who make you smile. All those that make you laugh. All those that make your day. All those that leave uplifting comments on your blog. **All I ask, is that you include a link to this post with the award and ask your recipient to do the same**

I pass on this beautiful gift to the special people who have touched my life by way of the written word.

To Casdok of Mother of Shrek and Susan Senator, both mothers of young men with autism, my heroes in this fascinating journey of life with autism,

Susan’s Nat and Casdok’s C are leaving home to explore the world- to learn, to work, to have fun, to   dream- and while I am as proud of them as their mothers, I can’t help but feel their moms’ worries,  apprehensions, anxieties, and fears. It takes a lot of courage and faith to set a child free to explore life. And so I send this to Casdok and Susan, with all the love I can muster in this world, for being the kind of mother I always dream to be.

To Odette of Little Miss Firefly and Gracey of XOXOGracey, whose ingenious crafts are as remarkable as their personalities,

As Odette starts a life Ireland with the man of her heart, I send her this with all the prayers and best wishes for a happy life. And to Gracey, who brings the vibrant colors of our country’s summers to the Netherlands, I send her this, too, with blessings of more grace in her life. Thank you for bringing color to my life.   

And to Mark of No Special Effects, a brilliant young man whose talents never cease to amaze me,  

A physician in the cusp of his career, Doc Mark is the unusual soul whose interests in food and photography make him my all-time favorite food blogger. His gorgeous pictures never fail to heal my soul, and his kindness to an old fogey like me (he visits this blog, yay!) is truly a gift. Thank you!

 God bless you all, dear friends!

Silencing the Savage Beast

Wednesday, July 23rd, 2008

I choose not to give Savage any more space and time; the less said about him, the better. 

Hear No Evil

Road Trip

Friday, July 18th, 2008

We’re taking the kids on a weekend getaway, only this time, Alphonse’s nannies will have to be left behind. I think of this as some sort of a test we have to pass as a family and the only criterion for passing would be surviving without help for at least 48 hours. I’ve noticed how we’ve all become a little too dependent on the help lately and I think it’s time we shake things up a little bit.  

Then too, this will help us prepare for that trip sometime in the future when it’ll have to be just us for a month or so. If things go well over the weekend, then it’s time to take Alphonse to other destinations.

So far, I’ve got everything packed and ready to go. Alphonse’s bag is always a production number by itself and this one took me longest to put together. While he has his own overnight bag filled with clothes, I have to bring another, albeit, slightly smaller bag to house his emergency needs like a change of clothes and underwear (for “accidents”), disposable pee bags, timer, food, candies, bubbles, his pecs notebook, Lysol wipes, tissues, a small towel, a squirt bottle of soap and a foldable cup, his medicines, and his iPod. See what I mean by production number? 

But hey, no worries. I love the idea of Alphonse stepping out into the world some more. I know he loves it too. Last weekend, when we brought him out to go to the mall to get some supplies, he didn’t stop singing the entire time. He was using his falsettos, throwing off those high notes in remarkable fashion, singing a wordless tune which mirrored his happiness. He held my hands and walked and skipped happily with me and his dad. And despite some minor problems (people literally jumped out of his way when they heard him, as if they were afraid, or many, as usual, stared impolitely), he enjoyed his short trip to the mall so much that the good feeling stayed with him for a few more days.

I hope this trip works out well for him again. I’m cutting his classes short today (we leave after lunch). I’ve brought some of his things so we could continue classes while on the road. Wish us luck!

Flight Risk

Friday, June 27th, 2008

Flying with AutismSometime in the near future, my husband and I are planning to bring Alphonse halfway around the world to attend a special autism camp. We’ve been preparing for this for months now, working on skills he will need to endure an intercontinental flight. Alphonse has never been farther from home than an hour’s plane ride and we’re unsure of how he will take to this long trip. Were this help readily available in the country, we would not even entertain any thoughts of plane travel with him. The logistics alone burns a big hole in the pocket, and with the economy going bad every day, we’re loath to convert our measly denomination into dollars.

Yet, at thirteen, we feel that adulthood is looming large over our heads. While the camp does accept young adults, we’d hate for him to have to wait for very long before we can see what else is out there for him.

I’m having second thoughts, though. Just the other day, the news reported of a child and his mother being forcibly removed (kicked off?) from an airplane. That the child is autistic only made my fears more real.

I don’t want to go too much into the issue of whether the airlines company was right or whether this was another case of autism discrimination.  I think much has been said against, or on the flipside, in defense of the actions of the airlines company and I would not be adding anything new to the discussion.

But I am appalled at the rabid and vicious reactions this issue has elicited from the population. Surprisingly, the greatest condemnations do not come from autism families, but from people who have little or no idea what autism is, or from those who consider autism as someone else’s problem. I’ve had to keep my tears in check while reading through all the comments posted in chicagotribune.com’s feature “Autistic Toddler Removed from Plane.”

The worst ones are those who feel that autistic children do not have a right to this world, “defective” children that they are. Many are simply too caught up with their personal comforts, thus revealing their own selfish views of the world. Here are some of the ones that tested my restraint and self-control.

~0~

“My momma always said that with kid meltdowns, parents only had 2 real choices - a sock or duct tape.
Duct tape, it’s the universal pick of flight attendants, pilots, and child-manipulated parents everywhere.”

~0~

“Reasons like this are why we shouldn’t let autistic people on planes. Sure some lady & her brat kid got kicked off, but what about all the other people on that plane who were delayed because of that terrible mother & her mentally retarded child. We’ve got to remember the greater good, people!”

~0~

a good smack and the promise of another would have no doubt resolved this.”

~0~

“Those among us who would like to behave as adults, and have control; both emotional and physical, of our children, should NOT be subject, to this kind of pluralistic editorial poppycock. I have rights and one of those rights is to travel with others who are capable of acting in a manner not associated with those who should perhaps be institutionalized.
“As a seasoned airline traveler who has seen every conceivable excuse from autism to drug addiction used to cover the truth about parents who don’t, won’t or cannot cope with their children…for whatever reason, I would like to say, PLEASE, allow me to travel and enjoy just as you wish to. The only difference between our philosophical positions is that you are in a small, sad minority, and no matter how much attention you cull, that will never change.”

~0~

“The mom should have told the brat, that if he does not calm down, the pilot was gonna throw him off the plane during flight. I’ve seen scare tactics used on kids and they work wonders. That kid stopped and wrapped his arms around his mother.”

~0~

“Enough is enough. I am sick and tired of parents of defective children who insist in them being treated as if they were normal. They are not normal. They cannot be mainstreamed. Get used to it. No amount of special treatment is going to make you feel good about your child. “

 ~0~

“I don’t think he was a safety risk. But I can’t stand screaming brats, autistic or not. And I don’t think that the rest of us ticket-paying customers should have to put up with this. If you have a problem child, STAY AT HOME. I don’t want you on my plane, on my bus, in my restaurant, at my movie, or in my shopping mall. GO HOME. STAY THERE. NEVER COME OUT for any reason. DIE THERE. GOOD RIDDANCE.”

~0~

“Do what I do & will continue to do (to other parents’ kids on airlines): smack their child & give the parents a look like they’re next. “

~0~

“TO STEPHANIE: “Some of you expressed understanding and empathy for the mum, but a lot of those folks, like me, have already had autism affect their lives on a permanent basis.”
“Exactly. And that’s why you are all so bitter. Your lives are permanently affected, so you take it out on the rest of us. It’s hard to feel sorry for someone like you when all you want to do is kick and scream and put a guilt trip on those who do not have children with autism. You underestimate everyone else’s level of compassion because your life isn’t what you had hoped it would be. Sorry, but we all have problems. Just because you have a child with autism, doesn’t mean that your life is any more special or important than ours. Get over yourself. I’m starting to think that autism is caused by a gene in self-absorbed, petty parents.”

~0~

I empathize with the mother and child concerned, as much as I also respect the airlines’ right to impose safety rules. Personally, I think that a little accommodation from the flight attendant (perhaps just even asking the mom how she can help is a start, instead of  handling the child herself) and also from the mother (she should have asked for a grace period of a few minutes and if the child was still uncooperative, then disembark from the plane without being asked to) would have gone a long way into resolving the issue. As human beings living on this same planet, as a community of people, courtesy and accommodation are visceral to living with each other in peace.

That being said, I think I have to speak my mind on the entitlements many feel we parents of autism use to “get our way” in the world. As a parent of a child with autism, I am very  aware of my son’s dependence on the kindness, tolerance, and compassion of others. As such, we have never used autism as an excuse to take advantage of others or refrain from obeying rules. Autism in our lives has not given us a sense of claim and privilege; on the contrary, we have learned to sublimate many of our own needs in favor of others’ comfort and wellbeing. We are always mindful and grateful for accommodations made for our son. And in the event that our son feels uncomfortable or overwhelmed or frightened, we are always first to remove him from these situations. The only real thing we ever ask for always is not to be judged.

Alphonse has missed much of life growing up, and this is partly because, I am ashamed to admit, we are always wary about disturbing others’ comfort and peace. And yet I ask now, if he remains locked from this world, and perhaps one day this too will happen to him- to be banned from church, to be rejected from school, to be kicked off a plane- what does this offer him but to entice him all the more to stay hidden and unbidden? Is your temporary convenience worth my son’s chances at a full and happy life?

Now, I am anxious about flying with my son. I know that there are many things that could have been done before, during, and after this sorry incident. And yes, I will keep all these in mind when I rethink our plans for Alphonse’s long-haul flight. Perhaps there are things we can control, and whatever they are, you who will share a flight with us in the future can be assured that we’ve worked on them to the full extent of our abilities as parents. Then again, perhaps, there are many more others that will surprise and befuddle us. Yet more than these, I am afraid of the hate, and wondering where this all comes from, I am most afraid of the answers. 

Secrets

Wednesday, June 18th, 2008

Secrets and HushesI ran into an old friend at a local grocery a few months back. We knew each other when our kids were very small. Her child was in a mainstreamed class in Alphonse’s school. We had the same hours in school then, even as our children were in vastly different circumstances. While Alphonse was a nonverbal toddler who required one-on-one teaching, her son, Q, was a bright, active, young boy with emerging, but very comprehensible, language.

Every morning, as the moms and nannies sat down for the long wait, she and I would seek our favorite corner of the lounge. Armed with our cross-stitching sets, books, and other paraphernalia to while away the long hours of waiting, we would often break the monotony of stitching with idle talk. In one of those long hours, she told me that their families — his and hers — do not know that Q was diagnosed with autism.

I’ve always been very upfront about Alphonse’s condition. The day he was diagnosed, I called everyone in our families and told them about it. My family (my parents and siblings) huddled around us as we all cried that very first day. My husband and I stayed on the phone for hours talking to my in-laws, trying our best to hold in the sobs that tore at our chests all day. And so, disclosure has never been a problem. There’ll be no cloak-and-dagger stuff with autism for us; truth to tell, my big mouth probably wouldn’t hold it in so well.

It was her husband’s idea, she said, to keep it in and hope that in a few years, no one will ever know he was “once autistic.” With his language blossoming rapidly in the year of speech therapy and his different preoccupations less persistent and less rigid, he was improving by leaps and bounds daily. But the secret weighed heavily with her, as relatives would often ask her about her son. Stumped for the truth, she would make up all kinds of excuses for Q’s current activities. She would create alibis for their time with the therapists, reinvent her descriptions of activities to include “normal”-sounding days, and keep her son out of their relatives’ scrutiny to hide the truth.

I did not wish to come between husband and wife, but I tried to convince her that hiding things will not make it any easier for their family. And despite many discussions of this theme till the day school ended, I was never able to change her mind. Before the year came to a close, she announced that Q had been accepted to an exclusive private school, where no one ever knew and would ever know that he is, or was, autistic. Then we said goodbye and I forgot all about her until the day she recognized me in the checkout lane of the grocery store.

I was very happy to run into her. We exchanged pleasantries and made small talk about our unfinished cross-stitched projects (she still has one from the late nineties, I have two). When I asked her about Q, however, a pained expression fleeted ever so quickly on her face. Then she laughed aloud, as if to cover up her embarrassment, and changed the topic. Later I saw her glance a few times over her shoulder to look in on a man and a much older couple. I pretended not to notice and we proceeded to talk about banal things while the checkout lane moved slowly. By the time she said goodbye, she whispered in my ear as she gave me a soft buss on the cheek. “They don’t know.”

Q must be 15 or 16 by now, and I wonder, in all those years, what they told him about himself. I really hope that he is as “indistinguishable” from his peers as they prayed he would be. It would be such a torment to wonder who and what and why he is the way he is without ever knowing the truth. To be “different” and not know why. To feel lost and not have any answers.

I used to think that people like my friend were rare in the world community of autism, the exceptions to the rule. I have met many fierce advocates of their children. And yes, we are a vociferous, vocal lot. And so, to run into more like her is deeply disturbing, yet at the same time, also heart-wrenching with grief. This takes our fight back to the days when the hush-hush mentality was the norm, when skeletons were hidden in the closet, and when prejudice ruled the day. Our only hope is that we can make our tooth-and nail fight for our children’s rights more public and more open as the days pass by.

But just recently, in another part of the world, the same question popped up: to tell or not to tell. In a Dear Abby syndicated column for the Arizona Republic on June 9), a family member posits this very same question.

~0~

Child’s autism kept secret
June 9, 2008 12:00 AM

Dear Abby:

 I have a beautiful 3-year-old niece I’ll call “Serena.” She is my brother “Simon’s” daughter. Serena is mildly autistic but has made amazing progress. We’re optimistic that she’ll be indistinguishable in a few years.

The problem is, Simon doesn’t want our parents to know about Serena’s condition. Simon thinks they would be judgmental toward him and would gossip about matters he would prefer be kept private. He might be right. But because he is keeping them in the dark, his relationship with them has deteriorated.

Simon has threatened that if I tell our parents about Serena’s autism, he’ll never speak to me again. Should I stay out of it or intervene? Is this kind of situation typical with families who have children with special needs?

Uncle With a Secret
 

Dear Uncle:

When a family member is diagnosed with a mental-health disorder, some families “circle the wagons” to hide it. While it’s regrettable, this is the path your brother has chosen. Not knowing your parents’ level of sophistication, I’m guessing he may be right about them and that he prefers to allow them into his daughter’s life only after her problem has become “indistinguishable in a few years.”

If you value your relationship with Simon, do not reveal his secret.

~0~

I have a mind to tell Dear Abby a thing or two, because in this day and age, I feel that “hiding in the shadows” is no longer an option. And while I may have some misgivings about labeling autism as purely a mental health disorder (which is deceptive and misleading, to say the least, although this term is still somewhat acceptable in light of its use in medical circles), I will have to pass on this issue for another time.

There is one central concern here, and this is the father’s acceptance of his child’s condition. That he feels he must hide is particularly revealing of his attitude towards his own child. That he takes on and uses his own biased judgment to predict others’ behavior towards this, that he decides for others what they feel or think or do without benefit of the doubt, is deplorable.

If I were Uncle With A Secret, I will encourage the father to come out in the open. Is he ashamed of the diagnosis? If so, then he must know, that autism is nothing shameful or disgraceful. Is it really just a case of wanting to protect his child from public judgment? Then, he must know, too, that in a world such as ours, we will never ever escape this, so why even bother to run from it? Face it squarely; celebrate your children’s strengths and never wallow in their weaknesses. And then, if this were a case of uncaring, unloving, petty, selfish, ignorant relatives, (of which I have had plenty of experience), then sever all ties with them and disavow them, but do not hide your child and his/her autism to please or appease anyone.Hiding in shadows

Autism should never be a secret, and in this case, if she were my niece, I will surely sit down with the grandparents and tell, regardless of the consequences of my relationship with my sibling. With love and support, children grow up believing in themselves. No child will ever thrive in the shadows; every one needs light and love to bloom and grow. And in the event that the grandparents are too ignorant to appreciate the blessing before them, then it is their loss, not mine, not the father’s, and certainly not the child’s.

Autism may have its heartbreaking moments, and this is true for all of us who live with it every single day of our lives. But it is also a landscape of learning, of exploration, and of wonder. It need not be a diagnosis of devastation. What it can be is what you and your family make of it. With love, acceptance, and faith, nothing is impossible.