What Happened to Us in 2006 (#558)
Small Talk, Big Walk (#560)

Time Zone Travel (#559)

"Turnahn musix!" Charlie called as soon as we got into the black car at the Philadelphia Airport. He had been singing a certain lilting fragment on and off in the last hour of our flight back from California: I flipped through the CD case but could not find Charlie's request. I pulled out a purple paisley-decorated disc: "Jimi Hendrix?"
Airplanebye_1
"Hendricks, yes," said Charlie and he sat straight up on his knees, beaming. Suddenly lines of white light and sparkling circles burst out in front of us from Lincoln Financial Field, where the Philadelphia Eagles were about to play the Atlanta Falcons. Charlie's head kept turning from side to side as we drove past Citizens Bank Park where we had seen the Phillies play back in July, past downtown Philadelphia, and, after a ways, past the Tacony-Palmyra Bridge, Palmyra being where Jim's best friend Mike who died almost three years ago had last lived: Another sentimental journey.

It's always a journey in Autismland, every day, is it not----I turn around to glance at Charlie in the backseat and still see the big baby whose wet, black-eyed head I first beheld more than 9 1/2 years ago in a room at the Missouri Baptist Medical Center, and then see those same eyes narrowing as Charlie concentrates on "Little Wing." And maybe because, as the parent of a disabled child, one tends to think about "big questions"---"what will happen when Charlie is retirement age?"---all the time, one often feels that one is traveling at least two different time zones, and when to sleep, or when to start brewing the morning coffee, is hard to tell.

Charlie's sleep habits have been so erratic for the month of December---staying up regularly until 1 or 2 am, taking a several hours' nap at school---that I figured going to the West Coast and being on Pacific Standard Time, three hours "behind" time in New Jersey, would wreak further havoc on his biological clock, and that is indeed the case. It is 2.30am here in New Jersey (11pm back in California) and Charlie is completely wide awake and speaking a steady stream of words or syllables. (Tuesday morning, when he goes back to school, is going to be interesting.) Charlie could not sleep at all yesterday; I know he knew it was his last night in California and he was awake till 1am.

This worked out to his advantage as far as air travel: Charlie, roused at 5.30am, went right back to sleep during our 7.15am flight and only awoke in the last hour and a half. I have accordingly become convinced that the best times to fly with an autistic child, or at least with my autistic child, are in the evening on a red-eye flight when one's child has had a full day and is glad to sit, or at the crack of dawn, when one's child can promptly go back to sleep. If there is one lesson I have learned from all these days and years with Charlie----and as it is 2007 and Charlie was born in 1997, I can start speaking of a decade with Charlie---it is that you do what you gotta do to keep him happy, yourself more or less calm, and so be it.

On the plane, a 5-month-old cried and wailed; Jim and I thought: "We've heard louder." Across the aisle, a black warm-up clad Asian mother passed a steady stream of bagels, muffins, cream cheese, and juice to her three children in the row before her (they also had DVDs, Bratz dolls, and a Game Boy), while attending to a preschool-age boy: When you're traveling, it helps to keep everyone content with creature comforts.

That might not be bad advice when you're getting ready for another year's journey in Autismland.

Wishing all of our Autismland friends and family a New Year of peace and joy, learning and loving, and witness and hope.

(And, around here, not a lot of sleep: I, as you may have gathered, need only a few hours, and I think Charlie is following suit.)

Comments

Yes Kristina, I have often wondered whether you get much sleep!

It is funny how some things can bring back memories,

When you said ,"You do what you gotta do."
It made me think of Mark's first teacher, Giordana, herself a parent of an autistic boy.

When I first met her a few years ago, I asked how she had coped.

Bearing in mind she had had to cope with a child that doctors said should have been institutionalized, as they considered him severely autistic, and they doubted that he would make much progress.
She also ,not long after, separated from her husband.

She said to me " You do what you gotta do.".

She did the best she could.

Learnt all she possibly could about autism, and developed the Imagine programme based on the late Og Lindsleys Precision Teaching.

Fast Forward 11 years

Julian, Giordana's son is a delight. He welcomes you to their home, with his American accent( they spent two years there and the accent stuck!)and asks if you would like a cup of coffee.

He is fifteen now and in high school.

He gives me a welcoming bear hug, and his face lights up. He beckons me to his room to show me his latest toy..

He and his brother are the apples of his mothers eye.

So fortunate that Julians mother never caved into advice given when he was 4 yrs old, and couldn't speak and existed on milk and apple juice...

You do what you gotta do ....in Autismland!

Kathy

Sorry Kristina , did it again.

mom-nos

And a very happy new year to you, too!

"all the time, one often feels that one is traveling at least two different time zones, and when to sleep, or when to start brewing the morning coffee, is hard to tell."

This is beautifully put - and so true.

Thanks for sharing your holiday adventures with us. I've enjoyed the virtual excursion!

Estee

Happy New Year, Kristina! We are in Florida and are very familiar with flight travel, but within same time zones!

Lisa/Jedi

Best New year wishes to you & the whole family! It's wonderful to be in such great company here in Autismland :)

Meg

I can't tell you how much I admire your brave heart bringing Charlie onto a plane. Fin has no fear, and would very much like to go on a plane. However, his noise sensitivity is overwhelming, and I panic at the mere thought of the plane doors closing, and to be trapped with a fight, or flight spectrum child.

Happy New Year!

Rose

Happy New Year to you! Wisdom and hope...I LIKE that!

Maggie

I came across your website about a week ago while looking for more infomation about autism. I've been back often since then. Thanks very much for the wonderful website! Keep up the good work!

mothersvox

Happy New Year to you and Charlie and Jim and all of your wonderful people!

And in the new year, I hope that you will reveal the answer to one question:

Just how many hours of sleep do you need Dr. K?

;)

Hugs to all of you from across the river. Welcome home!

Julia

I hear you on the topsy-turvy sleep schedule -- Sam was up until at least 1AM last night, partly due to the fireworks (someone was setting some off between here and the creek, so within a mile of our house), partly because his sleep schedule was allowed to get badly out of whack after I was at the ER entirely too late with his daddy on Dec. 22. (My brother-in-law brought him back from the hospital the next morning, he was here for Christmas, and in fact got the tree up, with our younger son's enthusiastic help.) My sleep schedule hasn't recovered from that for me to be waking him at an hour resembling the one he'll have to get up at on Wednesday (our first day back to school here).

I'm going to have a snack and go to bed. (No dinner, just a late lunch and snacking on stuff, mostly cheese and challah, at a friend's house from 3 until 8.)

Kristina Chew

Nearing 1.30 and Charlie is still up..... I still can't believe he managed so well on the airplane. Besides the cramped space, there's also the noise (coughing, crying, the buzz of the airplane) and the smells and so little to look at and no place to move around----I am relieved we made it through!

Thanks for all your good company! Looking forward to another good year of writing, sharing, and learning.

kyra

welcome back to the east coast and happy happy new year to your household!

Clay

It's good that you can travel with Charlie. Alas, it wouldn't work with Edith. For the last couple of weeks she has spent considerable amounts of her day screaming (blood curdling screams) and crying attached to persevating on either some where to go, or some particular food.

At her Psychologist appointment the other day, we took a bi-polar survey, and unfortunately, it looks like Edith may be bi-polar. That would certainly explain the constant mood swings and those violent meltdowns she gets from time to time. We are suppose to consult with her psychiatrist about this possiblility.

Kristina Chew

We have not had Charlie evaluated for bipolar, but he definitely has sudden mood swings---one moment calm and peaceful, the next screaming (in the blood curdling way you mention); both food and wanting to go somewhere are two things he can get very "stuck" on. (Just yesterday afternoon, it was less than a second, it seemed, when Charlie went from smiling to screaming and attempting to head-bang.)

He has had his share of meltdowns while in flight, including times when it was just him and me flying. The travel has gotten better as he has gotten older, though I take one trip at a time.

Hope the psychiatrist can help.

Clay

I wonder how you can determine the difference between a autistic meltdown and a bipolar mood swing?

Edith, a couple of weeks ago, had returned to biting her wrists, and some head banging, but thankfully that has ceased. (fingers crossed). She did bang her head twice yesterday but this was along with hearing a song she likes and the opening of the show Diego.

Doesn't it seem ironic that they somehow manage to get stuck on the very things that at the moment are not possible to give them? You tend to stand there frustrated because you know you can't meet their request, and have to listen to them scream at the top of their lungs and keep repeating what they want over and over and over and over. It's not good for your ears, but worse it not good for their vocal chords and nerves.

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