Humble Pie

No doubt you have heard the recent buzz on ABC News about American Airlines removing a 2 year old passenger with autism and his mother from a flight. It has been well editorialized here at A Life Less Ordinary. Emily's moral of the story is basic: Do not touch another person's child without permission! I have two impressions. First, how easily it could have been avoided.

Second, how easily it could have been us. Just as Kristina Chew at Autism Vox shares, I have a "trove of near-horror stories" having traveled at least once a year cross continent since our twins were 6 months old. I recall the worst incident laying over in Reno on Southwest. A seatbelt stand off between Reid and my husband (not a flight attendant) who wanted it buckled NOW. (The plane was about to land.) I think a Sprite spilled and one thing led to another...before we knew it we were watching what could only be described as a full scale anxiety attack. The only differences from the Farrell's being, we were landing not taking off and we were in a front row so we could bolt off the plane into the terminal for some relative privacy. I will never fly anywhere near Reno again! Slots being pulled everywhere in pervasive smoke, I ducked into a corridor and waited until Reid could think straight. My husband and daughter, mortified by the gawking crowd, fielded questions from ground agents and officers.

In contrast, I recall being ushered by other travelers and personnel to cut to the front of the line getting through Customs in London. All could see that we needed to expedite the process or Reid was going to blow. It's not rocket science but it does take a little insight, flexibility, and humility.

To the current buzz I have to add this video dramatization. It is set within a sermon by our former pastor, Neal Nybo, at Solana Beach Presbyterian Church. The entire sermon on Humility is great, but if you are short on time go to 16:15 on the counter to watch another mother with her grown daughter to see what they experience in the air.

Please advance to 16:15 on the counter, to view the airline scene which is about 6 minutes long.

Each of us have the choice, fellow traveler, stewardess, mother, child. Which role will you play?

"Christ who...did not regard equality with God a thing to be grasped but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men." Philippians 2:6-7

" Whoever exalts himself shall be humbled; and whoever humbles himself shall be exalted. Matthew 23:11-13

Then the King will say, 'I'm telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.' Matthew 25:40

photo credit: betty.libsyn.com

Flight Training

DoC, Dad of Cameron shares this video as another metaphor for the experience of parenting and living with autism. It can feel all at once, nearly impossible and incredibly rewarding--like landing a 747. The plane metaphor reminds me of a story my friend, Barbara Klett, shared with a group of us praying last April for ASD Pray and Fast Day. She wrote:

In his book, Christ for Real, Charles Price describes three people sitting beside one another on an airplane. One is an experienced business traveler, one a first-time flier who is pretty excited to be flying, and one a first-time flier who is motivated to get on the plane only because the plane will take her to see her grandchildren for the first time.

The experienced traveler takes the journey in comfort, reading his book, napping, and casually eating the meal. He exits the plane relaxed, refreshed, and confident. He had watermelon sized faith in that plane.

The first-time, excited flier is a bit nervous, feels every bump, is aware of every odd sound. He exits the plane a bit tired, but fine. He had peach-sized faith in that plane.

The grand mum is completely uncomfortable through the entire trip, holds on to the chair’s arm rests with white knuckles, tries to eat the meal but ends up losing that. She exits the plane exhausted and worn out. She had mustard-seed-sized faith in that plane.

No matter the size of their faith, they all arrived at their destination at the same time. It wasn’t that the watermelon-sized faith guy landed 2-hours ahead of the mustard-seed-sized faith lady. They only needed enough faith to get on the plane. The plane took care of the journey.

God is taking care of our journey. Our level of faith in God is merely a measurement of our exhaustion level as we struggle through, or our refreshment level as we rest in Him. The comfort of the journey is up to our interpretation. It matters not the level of OUR faith; it matters in Whom we place our faith.

So, are you enjoying the ride? Trusting the pilot takes a lot of pressure off.


Some trust in chariots and some in horses, but we trust in the name of the LORD our God. They are brought to their knees and fall, but we rise up and stand firm. Psalm 20:7-8

Your ears will hear a word behind you, "This is the way, walk in it," whenever you turn to the right or to the left. Isaiah 30:20-22

He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you. Matthew 17:19-21

Holland's Reprise

Welcome to Holland may be a familiar essay to you. (If so, skip ahead to the sequel which I bet you haven't seen.)

Welcome to Holland is often quoted and handed out to newly diagnosed families. It captures the emotional loss and dismay at that stage of the journey. It also stirs hopes for a new dream. Originally written by Emily Perl Kingsley about her experience with downs syndrome, it has significance to those of us experiencing other diagnoses as well.

Emily Perl Kingsley is the mother of a child with down syndrome. She has done much to improve the ways in which people with disabilities are portrayed in the media. She received many Emmy Awards working as a writer for Sesame Street and integrating mentally and physically disabled children and adults into their format. Her inspirational classic has been reprinted in many languages. Dear Abby runs this piece every October to commemorate National Down Syndrome Awareness Month.

When I shared it the MOPS (Mother of Preschoolers) group at our church last year I was reminded that it is even more universal than that. One of the older mentor "grandmoms" pointed out an application in her life that was not at all disability related. The fact is: managing expectations is a lifelong, human condition. Life takes many twists and turns that often diverge from what we have planned or envisioned. So, whatever your current circumstance, I hope you will pick up something new from this retelling of Welcome to Holland. You can read it below or watch this brilliant interpretive reading of it.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Now, for the sequel which to my knowledge was written by Lisa A. Eicholtz. It describes the relentlessly stubborn drive that we must have (or must develop) as parents of kids with autism. The conviction to never say never, always find a way, and think out-of-the-box until goals are met and skills are mastered one by one, as long as it takes.

When you wake up and find yourself in Holland, you realize it is a beautiful place. But, it's not the place you want to be. So you need to decide...do I stay here and enjoy the tulips and the farmlands? Or do I want to see the mountains and valleys and the beauty of Italy?


We have decided that in spite of winding up in Holland, we really don't want to stay. No offense to Holland, but after awhile, Holland is really no substitute for Italy. So, we get out new guidebooks and we discover that sometimes, you can get from Holland to Italy.

It looks like rough going and the terrain is not clear. And for some reason, there are no flights...we set off walking. We make some wrong turns and get lost--several times. But we persevere. Some day, with the right guides, and the right amount of effort, we will see Italy.

Who knows this better than Jesus, our Lord and Savior, who had Eden in mind as the destination resort for all creation? When sin derailed the agenda, He stepped in Himself to walk us across borders through the "horrible, filthy place" of Earth right into Eternity--which is way more beautiful than Italy.

You have taken account of my wanderings; Put my tears in Your bottle; Are they not in Your book? Psalm 56:8

"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:8-10

Bands of Light

Nerves ran high before the Kingsmen band performed at a local Borders last Tuesday. At least the parents were concerned and a bit self-conscious about letting our adolescent boys make this debut public appearance.

The boys belted out "Hang on Sloopy" and the youngest member of the band (9) graced us with a heartfelt solo of Ingrid Michaelson's poignant song "The Way I Am."

"Don't Worry about a Thing" chirped the Bob Marley lyrics as they called it a night. Reid said his obligatory thank you's to the cluster of teachers who came to support him, negotiated a DVD purchase with Dad and off we went to bed on a school night.

All's well that ends well. Practice makes perfect. Keep up the good work. Oh ye of little faith. Music in a universal language. The show must go on. You don't mind if I write in all cliches, do you?

How often have you been in a place where you could not see the future but needed to step into it anyway? The boys did this. The band leaders from The Music Therapy Center of California did it. We, moms, did it. As parents of kids with autism, we are pioneers whether we like it or not. I hadn't realized until afterwards what uncharted territory it is to have a special needs band performing in a neurotypical, public venue. It shouldn't matter and in many ways it didn't matter. At the same time, that is what made it meaningful.

Perhaps the most telling commentary were from the store manager afterwards. He said the 30 minute show was better than most of the in-store events they've had. What's more...he'd love to have the Kingsmen back on a regular basis! We'll have to see about that*@!*? (His son was not in the band; I promise.) Music has a universal appeal and so does hope. Could it be that hope is what he found appealing? Hope is compelling, even marketable to him, his clientele, and to the world.

My nephew has been to Berklee school of music and led bands from Boston to LA with his magnanimous personality and superior saxophone skill. He told Reid once that "Half of success is just showing up." Woody Allen thought it was 80%. True, practical, sage advice for any man. Much of what we need to know in life can be boiled down and made that simple...whether its the gospel, making a living, or pursuing a dream.

Flame is a band who just showed up and now they have a custom fire painted tour bus! The group began as a recreation program at Lexington Center in New York state. They were so well received by local audiences that they've now recorded two CD's and are moving from regional to national ambitions. Check out this promo tape and you'll wonder, is it Tracy Chapman or is it Michelle King? Reading the bios of Michelle and the other band members makes that old "Up, up with people" track run through my mind!



I don't do prophecy but I do enjoy forward thinking! Does anyone know of other bands like Flame and the Kingsmen? Please chime in if you do.


"By day you led them with a pillar of cloud, and by night with a pillar of fire to give them light on the way they were to take." Nehemiah 9:12


"We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!" 1 Corinthians 13:12-13 The Message

"...we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us." Romans 5:3

If Genius is not Normal--What Is?

What do you say when you hear someone has autism? Hard to know anymore...is it good news, bad news, or just interesting news? One of the top ten reactions I used to hear when telling others about my son is something like this, "Oh, is he really good at math? Is he one of those savants?" Well, no I don't believe he is. Reid is not savant but he is smart and skilled and capable. I am not a genius either but God thinks I am a MonaLisa!

Stephen Wiltshire, featured in the video above, is an architectural artist with unbelievable talent and a mind which clearly puts him in the autistic savant category. His achievement is inspirational and unattainable to us. Like the miracles recorded in the Bible, stories of savant accomplishment strengthen our faith and hope by their superlative extreme. Seeing mountain tops can lift us up from the valley. Even if we don't climb to the top, our eyes are set higher by knowing someone else has.

When Temple Grandin speaks, she often shows a slide of Albert Einstein's brain scan to illustrate that his genius was in fact, abnormality. Can you embrace what that really means? Would you rather be normal or a genius? Would you rather have a genius child or a normal child? The very questions strike are absurd? Alternatively, why don't we eliminate "normal" from our vocabulary? Who among us is normal? Who strives for it? Who is satisfied with it? Not one of us is normal in the eyes of God.

Brittany Maier was born fearfully and wonderfully made in the image of God with a sizable chunk (or maybe just a sliver) of His passion for music. She was also born blind, premature, and autistic. I think it is important to view savants not as freaks of nature or purely in amazement. We need to let them inspire greatness and mutual respect in us. The Wisconsin Medical Society has an awesome site devoted to savants. Perceiving others among us as talented changes their future, their self-perception, and our interactions. Try it!

"God created man in his own image, in the image of God he created him." Genesis 1:27

"With your own eyes you saw those great trials, those miraculous signs and great wonders. But to this day the LORD has not given you a mind that understands or eyes that see or ears that hear." Deuteronomy 29:3


"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17

My Father in Heaven

I read this post from Bev at Aspergers Square 8 about the power her father's words had over her even at age 47. Asperger's or not, we all crave words of affirmation like that from a father. Fortunately, our Father in Heaven has left us The Word.

At 43, I still experience pangs of needing to hear something akin to what Bev's father said to her. I have lived most of my life not knowing my own father (for some very good reasons). That reality has at different times caused me to feel independent, smug, numb, and deprived. While the absence of a father leaves a void, it also presents a portal to knowing the one and only, truly perfect Father who is God in heaven.

As a young girl and college student I enjoyed creating an imaginary dad for myself by cherry picking traits from my friends' dads and other men I knew, to make a composite of the dad I dreamed of as my own. This fantasy man was perfect maybe, but definitely non-existent. Now as a 43 year old adult, I see that even those most glowing and desirable traits are merely a reflection of the very nature of God the Father. As a believer, why not go right to the source and relish in my position as His prized daughter?

The Wall Street Journal ran a story yesterday in tribute to a father who epitomized the tough love of a generation ago. It made me cry, but not with yearning. My personal fantasy dad was no Mr. Helliker (notice he did not have daughters)! His strength of character and courage are of a bygone era. What it underscored for me though, is how dimly we see in the mirror the mystery of all God encompasses. He is strong, yes and tough and just and fair but, all at once He is also gentle, good, kind, tender, affectionate and expressive.

One of the most moving weeks in my Bible study this winter was Week 7 in Living Beyond Yourself. Beth Moore, as only Beth can, drills down deep to illustrate each fruit of the Spirit. God not only comes alongside us in kindness to help us parent our difficult children but He is also our parent. He comes to us--no matter how old--and "allows His throne to become a rocking chair." Just as babies need to be held, rocked, and soothed by parents in order to grow and fully develop, we need to let God love us as His children. We "can't know God only as the Sovereign Judge. We must also know Him as the nurturing parent--or our growth will be stunted."

The Father's Love Letter was popular a couple years back. I copied its verses into a spiral journal to read to my kids at bedtime. It is still a beautiful compilation of The Word from the Father to his children. Take some time today to watch, read or listen to it. You are loved.


The LORD your God is with you, He is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17



How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are! 1 John 1:3



For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, "Abba, Father." Romans 8:14-16

Must History Repeat Itself?

Out From Under: Disability, History and Things to Remember is the title of an exhibition at the Royal Ontario Museum in Toronto through July 13, 2008. It promises to be a powerful display chronicling the history of disability through personal narratives drawn from 13 diverse objects including a braille watch, a ventilator, and a death certificate. Podcasts are available online in lieu of traveling to Toronto. Out From Under was produced in collaboration with students, scholars and alumni from Ryerson University.

Audrey King who donated the ventilator bed on display recalls, "Only years later, did I realize ... the embarrassment was not the assistive device, which in reality liberates ... It was – and still is – the bureaucracies and support system inadequacies that confine people and rob them of freedom and choice." Isn't that what Ari Ne'eman was saying on Good Morning America yesterday?

It is the same sentiment that inspired my friend, Diana Pastora Carson, to found Ability Awareness. Hear the hopefully familiar ring in her words about her brother, Joaquin. "The experience of being disabled by his environment more than his autism continues to inspire me" to give workshops that educate and change public perception. She spoke to kids and leaders last summer at SportsJam at our church as we learned from guest speakers with various special needs. We raised the kids' awareness and the kids raised money to purchase beach wheelchairs like the one pictured above for our local lifeguard stations. Diana is another example of how siblings rock the world! She is one of the speakers preparing for University of San Diego's Summer Autism Institute "Autism: Work With Me, Not On Me" coming up June 23 - 25, 2008.

Understanding history will spare us repeating it. The acceptance movement is not one voice in the wilderness. It is not even that new. But its time has come.


But remember the former days, when, after being enlightened, you endured a great conflict of sufferings. Hebrews 10:31-33


He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Isaiah 53:2-4


These are the words of him who is the First and the Last, who died and came to life again. I know your afflictions and your poverty—yet you are rich! Revelations 2:8-9

photo credits: phmovement.org; goflorida.about.com