Lifelong

That word "lifelong" looms as an ominous cloud over the classical definition of autism. Whether you read it on a book cover, hear it from a doctor, or google search it, it's superlative and so final.

Here's one:

Autism is a complex, life long developmental disability that interferes with the person's ability to understand what he sees, hears and touches.

and another:

Autism is a lifelong disability affecting nearly 1 in 250 children

born in the world today. With the diagnosis of autism reaching

epidemic proportions, it is important that accurate information is made

available to anyone who will be working with, living with, or loving a

person with autism.

Lately (and remember I'm 14 years post-diagnosis), it's hit me thus: Who among us doesn't have a lifelong condition? Whether you call it sin or humanity, we all have it. It's not going away this side of heaven.

We all grapple with some resonant theme for the course of a lifetime. Some get help, make significant progress, experience breakthrough, accomplish amazing milestones, others remain stuck. We may make great strides for a season, even appear "recovered" for periods of time, but then slip back, fall off the wagon and feel hopeless. Two steps forward, one step back. It's universal--with or without an autism diagnosis.

Whether we tend toward pride, rejection, greed, anger, selfishness, fear, we each have our hot buttons. There are interventions available to help us in the natural world. Spiritual gains are there too. The Lord may reveal a verse that helps us through a time; accountability partners give us a leg up for a season; we enjoy success, even deliverance for years of time. But we remain: human, sinful, incomplete.

Personalize it. What prayer do you pray each Sunday in church? Have you become a broken record asking God for grace in the same area? I have confessions and recommittals that are recurrent, if I'm honest. They are lifelong issues related to my unique temperament, circumstances and alas, even God's purpose in my life.

And so, we work out our salvation... Life...Long...until that day we are complete in Christ.

Until then, you might say we're all learning how to die...to self, to sin, to _____.

Jon Foreman sings it best:

The revelation of God is whole and pulls our lives together. The signposts of God are clear and point out the right road. The life-maps of God are right, showing the way to joy. God's reputation is twenty-four-carat gold, with a lifetime guarantee. Psalm 19:6-8 The Message

For to me, to live is Christ and to die is gain. Philippians 1:20-22

Therefore, my dear friends...continue to work out your salvation with fear and trembling... Philippians 2:11-13

Alleluias after Easter!

Are there memories etched in your mind that would be establishing shots in a movie of your life? Have you ever wandered aimlessly alone through a bookstore and found a book that was written just for you?

I have. One cold, wintry night 9 years ago in a suburb of Chicago, I was encouraged by my husband to "just get out for awhile." As ever, I found myself inevitably combing the shelves of a bookstore in search of something very specific but nothing in particular. That night I found a little gem, Changed by A Child by Barbara Gill, that satisfied my craving.

If I were to go out tonight on that same hunt, I am sure I'd come home carrying Autism & Alleluias by Kathy Deyer Bolduc. This handheld, personal treasure is a godsend of hopeful, gutsy true grit that lets me know I am still not alone on this road through adolescent autism to glory.

My copy is already circled, starred, underlined and doggeared. I don't think there has ever been a book that scratched so many of my itches. Like a psalmist, Kathy tells it like it is in raw poetic honesty. In each of 39 vignettes, she captures God's intended purpose in real challenges and celebrates how her son, Joel, has shown her His grace.

She does not stifle the truth like a proverbial church lady, but writes candidly enough to have me welling up and ultimately sobbing at the beauty of almost every 2-page devotional.

She gets the daily calls from school; she knows the "anger that's been tamped down for months;" she "reads his moods like an investor watches the stock market;" "exhaustion is her constant companion." AND (not but), it has made her holy.

Her "body remains in the front pew of College Hill Presbyterian Church, but her spirit stands in the sacred presence of God." I love that line!

Thank you Kathy for being one of the saints who has gone before and written it done for our benefit. I would add you to the Hebrews 11 Hall of Fame after Enoch, Noah, Abraham, Moses and Rahab.

These were all commended for their faith, yet none of them received what had been promised. God had planned something better for us so that only together with us would they be made perfect. Hebrews 11:39-40

If you are free tomorrow at 2:00 EDT, tune into a webinar with the author. "A Place Called Acceptance" (click here to register) will also include Bill Gaventa, Editor of the Journal of Religion, Disability, and Health, and Ginny Thornbugh, program director for the Interfaith Initiative of the American Association of People with Disabilities.

How Do We Educate?

Do you have 20 minutes to spend with Sir Ken Robinson? You'll laugh and be inspired to think of intelligence differently.



After absorbing his points and reading Donald Miller's blogpost today, I ask myself, "What if Reid were treated as if he were highly intelligent?"

This afternoon a conference call with the purpley woman....tomorrow a pre-IEP meeting at his school......Winds in the east, mist coming in, like something is brewing, about to begin. Can't put me finger on what lies in store, but I feel what's to happen all happened before...

Kick me!

Who doesn't need a kick in the pants every once in awhile? I got mine--affectionately--from Kelly Langston, my Facebook friend, fellow blogger and author of Autism's Hidden Blessings.

Here is her Authenticity Challenge: to find 12 Christian bloggers who will commit to get real and post everyday from January 25th to February 8th about how your faith helped you deal with a situation. Yikes! that's 2 weeks; I thought it was one when I enthusiastically replied, "I'm in!"

I need Kelly to move next door, call to me from over the hedge, "get writing you sluggard," and reward me with coffee cake when I click "publish post."

Today's an easy one, for yesterday Reid threw my iPhone onto our hard, unforgiving, slate floor when I held firm to my "no, you may not have it now."

If you've been reading long, you know I am practiced at self-control, anger management, and taking deep breaths. Sometimes I snap, but this time, I benefitted from the years of preparation. Having witnessed a shocking number of broken electronics, remotes, speakers, dvd players, ipods, even laptops in the past, made it relatively easy to remain calm. Practice makes perfect.

In the heat of any crisis, if I can call up a verse, glimpse a lesson God might be teaching me, catch an illustration to blog about alter, or fathom some eternal purpose to it, then I am willing to endure it. The more I am able to do this, the sooner I can almost embrace it as character building. For in short order, the Bible promises we and all our stuff will return to dust. Our spirits will be reunited with the Creator for eternity as He originally intended. So, this is all just one short, sometimes miserable, sometimes fun, camping trip anyway.

The verse that coursed through my veins as I surveyed the broken glass and screen gone white was, "Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also. Matthew 6:19-21

So, silently, sooo silently, I thank God for that truth. In doing so, I was reminded that my relationship with Reid is more valuable than any gadget. The perseverance and self-control I develop are what God cares about. The opportunities to model this and teach Reid respect for property far outweigh the actual property itself. Reid is the treasure who'll be with me in heaven. No thief can steal the character or hope that we amass on this journey through autism.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:1-4

"Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5: 3-5

To be authentic, I will say it put a damper on the day. We missed our usual morning church and trudged along until deciding we needed to get our praise on at the last ditch 6:45 PM alternative. Not knowing if the phone was repairable or what it would cost, placed us on hold as much as when the electricity had gone out a couple nights before. Worship plugged us back into the power source. It is like magic and clockwork every time I need an attitude adjustment.

The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song. Psalm 28:6-8

So that you can experience some of the character developing patience of which I speak, (and because the bus is about to arrive) (and because I need to post again tomorrow) I will pause it there...

31-derful Options

Leaving the psychiatrist's office with a new game plan (or rather the same one that I will follow more closely this time), Reid and I were early arrivals at Allie's bus stop. I decided to spring for a cookie, cinnamon roll, and iced mocha at the neighborhood bakery there. On familiar turf with the rarity of time to spare, the cloud lifted.

A song lyric rang through my mind...it's gonna be alright....

"Reid, who sings that song? It's gonna be...," I asked the master dj. Quicker than a Shazam app, he spouted back, "Sara Groves! It's on Add to the Beauty," then proceeded to sing the rest of the album. Just like Toucan Sam, he always knows.

Hope springs eternal. As the good doc offered, "If this doesn't work, I have 31 others we can try." Hmmm...that brings to mind another foundational hymn to bear in mind:

My hope is built on nothing less

Than Jesus Christ, my righteousness.

I dare not trust in (doctors or meds),

But wholly lean on Jesus' name.

Sing it with me now

On Christ the solid Rock I stand;

All other ground is sinking sand,

All other ground is sinking sand.

Parents Rule!

Kids drool? well, not exactly.

On an hour respite from a trying Thanksgiving weekend, Allie, Kat and I discovered these bracelets. We each picked a different inspirational mantra that suited us perfectly. They seemed custom made expressing our individual approach to all that life was dishing out in the moment. The serendipitous finding buoyed us through the rest of the day affirming our particular piece in the family puzzle.

Allie's says this:

Kathryn's said "Don't Settle for Less."

and mine:

Riding out a wave of medication, scary behavior, and holiday expectations had me feeling like the kindergarten Dutch boy with his finger in the dike determined to hold back the sea. Impossible and solely my responsibility. Now, Monday morning, I am grateful to run across this draft of a post which reminds me of parents who've gone before and Redefined the Impossible...a future for kids.

Check out Berkshire Hills Music Academy, an incredible post-secondary school in a collegiate setting for young adults with disabilities to pursue their musical passion. Living in dorms with support, they learn life skills and academics in a music-infused curriculum. I love the sound of that! And the fact that they take it to the streets and perform in the community. How did it come to be? Parents founded it. Out of necessity, no doubt.

Another example you may have seen last month in Wired, is of Thorkil Sonne, a parent, who formed an IT consulting firm in Denmark called Specialisterne that trains employers how to maximize the unique talents and productivity of Aspies.

My friend, Jody Mlynek created Logan's Friends to help churches around the country be more inclusive. Her business was born through her experience starting a program to serve her own son, Logan.

Do you know others?

In most cases, a parent has the greatest motivation to ensure his child's future. Many fabulous tutors and therapists have circulated through our home, but you know what? They keep leaving to get married, have babies, or get Ph.D's. We remain. I was feeling the weight this weekend of having the kid only a mother could love. It's heavy. And I do. Undoubtedly, parents have the strongest love and most relentless pursuit for their kids' potential.

Indeed, our Father in Heaven has an undying hope for our future. Since He created us, knows us best, and delights in each of us, He is absolutely the one most inspired to prosper us, see that our joy is complete, and give us hope. His is the best plan of redemption for our permanent future: not a special school but a mansion with many rooms awaits. He went to great pains to get us there. He sacrificed a piece of Himself to make it possible. He designed Plan B when Plan A didn't work. He never leaves us or forsakes us.

What a role model. Parents rule. God reigns!

The hired hand is not the shepherd who owns the sheep. So when he sees the wolf coming, he abandons the sheep and runs away. Then the wolf attacks the flock and scatters it. John 10:11-13

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 3:1-3

For nothing is impossible with God. Luke 1:36-38

Drawing Strength from Testimony

Each of these 30 minute vignettes produced by Joni and Friends Television will put your life into a new perspective. I particularly love the one titled, As for Me and My House, about Brian Doerksen's family. He is the singer songwriter who wrote several of my now-even-more-favorite praise songs. (Click on "Episodes" then scroll down.)

He and his wife have 6 children including 2 boys with Fragile X, which presents much like autism. Take time to be inspired by their testimony and glimpse into their tender family life. I particularly love the father-son shaving scene, perhaps because Jim and Reid are beginning to talk strategy on that rite of passage.

It is way belated to make this a Father's Day post, but it does remind me (as did similar scenes from Praying with Lior) of the unique resonance Doerksen's Faithful Father song has in describing God our Father. Coming from this humble man who is "forever faithful" to his boys, it is powerful to think of a God who is superhuman-ly able. What power and truth are in the words he sings..."for who you are, for all you do...from the moment my life began...you have been, you will be, certain as the rivers reach the sea, surer than the stars..."

And this clip of their son placing the final brick in Nehemiah's wall is a sermon in itself...



Yes! Thank you to the Doerksen's for sharing honestly all of who they are...modeling full inclusion...and proclaiming the truths of God through their questions rather than answers.

I'm Mendinnng....

I awoke the morning after melting, still in the doldrums. Wanting to tell the whole truth here and avoid pat platitudes; knowing I had to write about the pits because depression among spectrum moms is a real threat, I spewed yesterday's post out as soon as the bus pulled away from the curb.

I was grateful for a couple hours privacy before I had to get dressed and take a new friend to the Healing Rooms today at noon. Although this had been arranged for awhile and I offered to help her with some very big fish to fry, it now seemed providential that I not only escort her but sign up for some intercession myself. As the emotional stew still smoldered in my pot, I thought, "it's a good thing I'm headed there." I need some kind of spiritual IV, directly into my bloodstream. An injection of energy, hope, motivation to lift me outta this rut.

Standing before an accumulating sinkful of dishes calculating how many more days I could leave them, the words--love that wilt not let me go--dropped into my head. Isn't that a hymn? Google, old, antiquated, gag, forget it, wait...Chris Rice version sung by John Michael Talbot, lyrics...Whoa! God is speakin' to me now.

I'd been thinking how far I'd let myself go in the four short days since Allie had left; how few steps separated me down a tunnel from a place I didn't want to be. How my diehard pledge to never let Reid slip into oblivion was in fact, slipping. How a woman overboard cannot throw a lifeline to another.

Alas, someone else holds my line and will not let me go. When I read the specific circumstances in George Matheson, a blind preacher's, life when he wrote the hymn I wanted to cry (again). These tears were a different flavor--of gratitude and awe and being known intimately by an infinite God.

Matheson had lost a fiance because of his blindness and now his sister was leaving him to marry. He had sunk into mental anguish because of recurrent loss and fear about his future. God had him by a tether and deposited the lyrics of that song into his mind for the benefit of generations to come--or at least for me! The very same God who wilt not let him go, wilt not let me go either, or you, or Reid.





Excited, I kept searching. It got even better! Matheson said about the hymn:

My hymn was com­posed in the manse of In­ne­lan [Ar­gyle­shire, Scot­land] on the ev­en­ing of the 6th of June, 1882, when I was 40 years of age. I was alone in the manse at that time. It was the night of my sister’s mar­ri­age, and the rest of the fam­i­ly were stay­ing over­night in Glas­gow. Some­thing hap­pened to me, which was known only to my­self, and which caused me the most se­vere men­tal suf­fer­ing. The hymn was the fruit of that suf­fer­ing. It was the quick­est bit of work I ever did in my life. I had the im­press­ion of hav­ing it dic­tat­ed to me by some in­ward voice ra­ther than of work­ing it out my­self. I am quite sure that the whole work was com­plet­ed in five min­utes, and equal­ly sure that it ne­ver re­ceived at my hands any re­touch­ing or cor­rect­ion. I have no na­tur­al gift of rhy­thm. All the other vers­es I have ever writ­ten are man­u­fact­ured ar­ti­cles; this came like a day­spring from on high.

God orchestrates the planet and delivered a love note to me in my kitchen on the very same day 127 years later (look at that date!) from one bruised heart to another about His promise to never let go. Cosmic, I tell you. My own historic day-after-birthday anniversary commemoration.

Then my "care-receiving" friend pulled up with flowers for me. How did she know? What did she know? She had just sensed and been compelled to buy them! I cried again (so much for stoic). To the Healing Rooms we both went, feeling better already.



The LORD'S lovingkindnesses indeed never cease, For His compassions never fail. Lamentations 3:21-23

But I trust in your unfailing love; my heart rejoices in your salvation. Psalm 13:5

...be content with what you have, because God has said, "Never will I leave you; never will I forsake you." Hebrews 13:5

Face to Face

Casdok, aka Mother of Shrek, has created a new blog. Faces of Autism is an online photo gallery celebrating individuals on the autism spectrum. Check it out and add yourself, your loved one, or look for Reid! He is indeed, impossible to capture in just one photo but the one I picked does lay claim to his gregarious sociability with strangers and exuberant joy. He loves music and loves the Lord, so that day at the House of Blues' Gospel Brunch put him in his element. No qualms at all about posing with those buxom ladies! Or joining them up on stage for that matter--next time.

Casdok's ever positive and constructive outlook reminds me of the verse Jim and I chose 22 years ago as a reading in our wedding. It is the origin of all positive thinking, self-help strategies that have followed.

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:7-9

The practice of this verse has followed us through life by necessity. It is both fascinating and faith-building to realize how that has happened. We chose the verse at 20-something, completely naive of what particular trials and tribulations would become our life's journey. As if prophesying the twists and turns that would characterize our future, the verse has become a mantra for the ride. God, not limited by time or space, saw fit to give us confirmation and a comforting sense of destiny as we look in hindsight at what we stood for, signed up for, and in fact, what he had in store for us, as a partnership and then as a family. What we could never have anticipated, He knew. And He found a way to speak it to us through His Word in the present then, just as easily as if He had told us, "This verse will come to define you..." or "You're going to need this one." Or "Listen up, I'll give you a little hint."

Here's another example. When attempting to adopt, Jim and I wrote a sort of resume, as was protocol, about us as potential parents. We sent it to hundreds to make our desire known and hopefully meet potential birthmothers. At the bottom of that letter, we added this hopeful verse: "Now to him who is able to do immeasurably more than all we ask or imagine...to him be glory...for ever and ever!" Ephesians 3:19-21

Well....lo and behold, that verse came true literally, when we matched with a birthmother who was expecting twins! He had indeed, done immeasurably more than we had asked! Our thrill at getting the ultimate twofer--a boy and a girl--fueled an adrenaline rush that lasted at least 48 months. That was way beyond our wildest dreams and more than we would ever have dared to even utter aloud. God must have had a little chuckle, when we were printing those cover letters, knowing as He does, all that has ever come before and will ever come to pass.

Do you have a life verse? Is there a verse that follows you in a good or bad way? If not, claim one and see how God will use it in your life.


My heart says of you, "Seek his face!" Your face, LORD, I will seek. Psalm 27:7-9


Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 1 Corinthians 13:11-13


The LORD make his face shine upon you and be gracious to you...Numbers 6:24-26

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