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

Archive for the 'Kids' Category

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

Smile, Baby, Smile

Thursday, September 18th, 2008

Last week, I wrote about adolescent angst and how it’s making itself felt in my household of two teenagers (technically, both my boys are teenagers by chronological ages, but the young one is still a little child in many, many ways). Of late, it has been one issue after another: late bedtimes, chronic daytime sleepiness, inattention and apparent deafness (or just selective hearing), repeated (^nth power) requests to use Yahoo Messenger, and worse, going through a PhP300 prepaid cellphone load in just a matter of days!

We’ve slowly adjusted our household rules to address these issues. For example, his late nights do not worry or bother me as much as it did in the beginning. Studies have shown that the period of adolescence brings about a change in circadian rhythms. While the the sleep-related hormone melatonin remains at a constant level from childhood to adolescence, alterations in the timing of its secretion by the pineal gland affect their sleep-wake cycles. Melatonin secretion occurs later at night, making early sleep difficult, and turns off later in the morning, making early wake-up time just as difficult.  

Alex, who used to have a 10 pm bedtime at age 12, now can’t sleep earlier than midnight, and this we understand and accept fully. On a regular school day, he averages only five and a half hours of sleep (12 MN to 5:30 am) as school starts at 7 :45 in the morning. Thus, on weekends, if his schedule allows for it, we let him stay in bed longer to make up for lost sleep.

The other issues are a bit trickier. When he “seems deaf,” do I just repeat myself? YM requests must  answer a need, and not necessarily a want (like, is it for homework, or for socialization), but I find myself questioning and second-guessing myself if I limit his social interactions with this rule. Ahh, no easy answers, it seems.

And lastly, the sudden burgeoning of his cellphone load expense. Last year, PhP300 lasted him two months, but now, we see his load dwindling in a matter of weeks, days even. To instill in him some fiscal responsibility, we decided to make him buy for himself every other load card he needs. So,  on an alternate loading schedule, we share in the burden of his expense.

I find myself thinking about him more and more these days. I worry about him now more than I do his differently abled brother. Autism is difficult, true, but at least we have a clearer sense of how much Alphonse needs us and how long we will be in his life.  With Alex, there are so many possibilities- a million potential outcomes, it seems- that I worry about the choices he makes and how it will affect his future. The changes that seem to come almost every day leave me unsettled, wistful, and nostalgic. Sigh.

Every now and then, though, I still see glimpses of the little boy who followed me around shouting “I love you, Mama’ in sing-song fashion. Of the chubby six-year-old boy who refused to leave my side. Of the twelve-year-old who broke out in song every chance he could get, singing the Les Miserables libretto by heart. 

On a day like this, when he and his father exchanged ridiculously funny messages on SMS.

And on a day like this, I just have to remind myself to stop worrying and to “Smile, baby, just smile.”

Growing Pains

Thursday, September 11th, 2008

It must be the season for adolescent angst as I deal with two hormonal young men in my household. While Alphonse grapples with his feelings of jealousy and insecurity, Alex seems to find his way into mischief now more than ever. All weekend long, he and I were constantly bickering, and I suddenly missed the days when my son thought of me as divine and infallible. Nowadays, it seems the first words out of his mouth always begin with a “But.”

By Sunday, I was worn out from all the explaining and discussing, and yes, arguing. I ignored him as long as I could; I didn’t want him to see me lose control. Worse, I didn’t want him to see me cry. I crawled into bed in the middle of the afternoon and slept.

When I woke up, I saw a piece of paper neatly folded by my side table. On it was a poem Alex had written for me. This time, I gave in to my tears.

How the heart weeps and cries,
For such a useless thing
How meaningless can a man die,
When he starts to weep and sigh

On accounting of my deeds
I’ve oft but shown my pride
I say with lack of dignity
“I’ve been all I’ve needed to be!”

“I deserve a right to do
Whatever I may wish
To rampage through lands unknown
To scour the globe with steel and bow!”

“I’ve done what I’ve needed to do!
The time now is to relax and be through!
With useless chores and laborious days
I deserve my break!”

But on reflecting of my crimes
I’ve seen with sorrow and dread
Unknowingly and grudgingly
I caused my own death

My death from times I might’ve enjoyed
If patience I had had
And times I may’ve laughed and smiled
When all I’d done was sigh

And in seeing my attitude
Of how I sit upon a high horse
I scurry down with fearful dread
And change my heart’s ways

“Have pity!” I cry
bending down on knees that creak and groan
“Have mercy, please, I beg of thee
I’ll change now and forevermore.”

This I said with a changing heart
That smiles as it did before
Before, when I was proud and grim
Before, when I was seated on my high horse

I didn’t think adolescence would be this tough and right now, we’re barely at the starting line. The days when my son tests my patience and parental control while he searches for his sense of self, his identity, and his autonomy seem at hand; I dread more days like these. And yet, as long as he continues to dialogue with me- with us- and as long as he expresses his feelings of confusion, anger, remorse in ways like these, I am pretty confident we will weather this teenage storm. I pray. I hope.   

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!

Midterm Confessions

Thursday, July 24th, 2008

(aka Please Don’t Shoot The Messenger)

Dinner, Sunday night.

Alex: Mama, we’re going to confession tomorrow. (Sounds nonchalant, just trying to make small talk)

Mom: Uh-huh… (mouth full, making yummy chewing sounds)

Alex: And Ma? (stops in between mouthfuls of food)

Mom: Uh-huh? (I get a chill down my spine. I don’t like the sound of this…)

Alex: Midterm grades are coming out the same day.  (Takes a deep breath and blinds me with the metal braces of his smile.)

Mom: Uh…huh… (Inflection on huh; A and I exchange knowing glances.)

Alex: You think they’ll make us go to confession tomorrow so if our parents kill us for poor grades, we can go straight to heaven?

Mom: Uh-oh. (Oh, well, got to give him credit for trying to make me laugh.)

http://www.dubuque.k12.ia.us/parents/ReportCard350.jpg
source: http://www.dubuque.k12.ia.us/parents/ReportCard350.jpg

Update: Doing okay in math, but he’ll have to do much, much, much better in Filipino.

(Man, can anyone tell me why this boy thinks in English and is hopelessly terrible in his own language?)

Back Home

Tuesday, July 22nd, 2008

We’re back home and back to our everyday routines. Yet, before the last weekend fades into distant memory,  I want to thank all those who wished us well - Doc Mark, Casdok, Megamom, Leirs, Doc Ness, Beth (FXS Mom), Mari, and Odette — your prayers and well wishes are very much appreciated. :-)  Thank you, dear, dear friends. We had such a great time that already I am planning and saving up for the another weekend trip next month.

Last Friday morning, Alphonse woke up at the crack of dawn. He was too excited to sleep, I guess. He kept handing me a picture of ”car” and I had to repeatedly remind him that it was still too early to go anywhere. We sat down and looked at the picture schedule of his day and that seemed to quiet him down.

After a three-hour lesson in the morning, a leisurely lunch, and some play time, he knew it was time to go. He hurriedly dressed himself, slung his pecs notebook over his shoulder, and climbed into the back of the car, a silly grin plastered on his face as he waved happily to his nannies.

Thirty minutes into the car ride (we were not even out of the city limits), I took a peek at the back through the rearview mirror and was surprised to see both boys fast asleep. It’s not unusual to see Alex sleeping at the oddest hours- this boy sleeps as soon as the car starts- but Alphonse is another matter. Still, the day’s excitement was probably a little too much for him. Add the fact that he started his day long before the sun was up, and it  was understandable to catch him dozing off.

We got to our destination shortly before sunset. Alphonse spent a few minutes walking around the well-appointed hotel suite. He checked the mini-bar, flushed the toilet a few times, channel surfed, ate the complementary fruits, and paced the entire length of the room as if counting his steps. Then he insisted on opening the balcony door to catch a whiff of fresh sea air. He took three sniffs with his flaring nostrils, frowned at the thick, salty air that assailed his senses, then closed the door back to settle in on the airconditioned room. So much for nature.

Over the weekend, we were able to bring Alphonse everywhere. Alex volunteered to baby-sit while A and I have a quiet dinner but since I don’t trust two teenagers alone in a room together, we hauled them everywhere. Alex feigned hurt that I did not trust him to watch after Alphonse, and he seemed to get a kick from my response that if I catch both of them in a wild party with girls and drinking, I’d have to ground their a**es till they were in their thirties. :D

It was amazing to see Alphonse enjoy himself. The last trip we were in all together was almost two years ago, a few months before he went on “siege.” Since then, we’ve been wary about bringing him places, as new people, places, and experiences could set off a major tantrum. Lately, however, we’ve seen in him a renewed interest in the world. He’s been so much more attuned to others around him. And yes, his behavior has improved so much that most of the time, he now simply responds to verbal reminders on how to behave and act appropriately.

We were able to eat dinner at a Japanese restaurant and while he kept looking at the other tables, probably wondering why his food was taking a bit longer than he was used to, he did not whine at all nor did he attempt to grab someone else’s food. He played with memory cards until his food arrived, and when it did (a large order of tempura and a bowl of gyu saikoro don), he gobbled it up almost immediately. Not content, he begged for slices of Alex’s teriyaki chicken, and only after eating half of Alex’s food did he appear sated. Then he sat down quietly, taking in the conversations around him, till we were all finished.

It was the same thing when we brought him to fastfood joints. Here in Manila, drive-thrus and home delivery are commonly the methods of food acquisition we use, as they limit our interaction with other habitués of any dining facility. Over the weekend however, we discovered that Alphonse could now tolerate waiting periods, could eat independently, and best of all, would not grab at other people’s food or drinks. It was such a major stress reliever.

The trip without the nannies was a big test, true, but he seemed to enjoy the independence. Of course, I looked in on him while he bathed and dressed (I supervised), but I no longer needed to help him with a lot of things. Also, he used his communication notebook and pecs cards more consistently; we were surprised to find him “asking” for things and not simply waiting for it to be brought to him. And these were some of the lessons we brought home for his nannies. They were there to watch over him, to prompt him occasionally, to help him cope with the things in life, but they are not his hands or feet. Many things he will have to do by himself. It’s time to stop the babying and let him be the man he is destined to be.

Alex and I were reviewing our weekend pictures last night when he remarked, quite aptly, that our pictures seemed so mundane and would hardly merit any praise as travel pictures. (“Mom, you took pictures of the bathroom? Did you take one of the park? How about the beach?”) He didn’t want some of his pictures shown, the ones where I catch him holding on to his PSP as a fifth appendage, and I had to twist his arm a little (not literally) to convince him to allow me to show people how he sleeps with his mouth open. I certainly agree with his astute observations; I did forget to take shots of the lovely beach and the verdant park. Yet, I explained to him, that this last weekend was not about the destination but about the family, not about the sights but the journey. And if those 48 hours were any indication of what our future will be as a family living and loving and thriving with autism, then I can look forward to tomorrow with inextinguishable hope.

 

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. 

When God Created Fathers

Tuesday, June 17th, 2008

by Erma Bombeck

When the good Lord was creating fathers He started with a tall frame.
And a female angel nearby said, “What kind of father is that? If You’re going to make children so close to the ground, why have You put fathers up so high? He won’t be able to shoot marbles without kneeling, tuck a child in bed without bending, or even kiss a child without a lot of stooping.”
And God smiled and said, “Yes, but if I make him child-size, whom would children have to look up to?”

And when God made a father’s hands, they were large and sinewy.
And the angel shook her head sadly and said, “Do You know what You’re doing?” Large hands are clumsy. They can’t manage diaper pins, small buttons, rubber bands on ponytails or even remove splinters caused by baseball bats.”
And God smiled and said, “I know, but they’re large enough to hold everything a small boy empties from his pockets at the end of a day … yet small enough to cup a child’s face in his hands.”

And then God molded long slim legs and broad shoulders.
And the angel nearby had a heart attack. “Boy, this is the end of the week, all right,” she clucked, ” Do You realize You just made a father without a lap?  How is he going to pull a child close to him without the kid falling between his legs?”
And God smiled and said, “A mother needs a lap. A father needs strong shoulders to pull a sled, balance a boy on a bicycle, or hold a sleepy head on the way home from the circus.”

God was in the middle of creating two of the largest feet anyone had ever seen when the angel could contain herself no longer. “That’s not fair. Do You honestly think those large boats are going to dig out of bed early in the morning when the baby cries? Or walk through a small birthday party without crushing at least three of the guests?”
And God smiled and said. “They’ll work. You’ll see. They’ll support a small child who wants to ‘ride a horse to Banbury Cross,’ or scare off mice at the summer cabin, or display shoes that will be a challenge to fill.”

God worked throughout the night, giving the father few words, but a firm, authoritative voice; eyes that saw everything, but remained calm and tolerant.
Finally, almost as an afterthought, He added tears. Then He turned to the Angel and said, “Now are you satisfied that he can love as much as a mother?”
The angel shuteth up.

~0~

A and Baby Alphonse

(A and Baby Alphonse) 

The true measure of a man’s strength is his love for his children.