Thursday, October 2, 2008

From God's lips to Jamie's pen

If I had cherished iniquity in my heart,the Lord would not have listened.But truly God has listened;he has attended to the voice of my prayer.—Psalm 66:18-19

I have a friend, Michael John Vines, who wrote a rather obscure book about a young girl prophet, called Theophany. To this day, that book remains one of my favorite novels of all time.

Michael is a theologian. He was a close online buddy of mine about a thousand years ago when my boys were diagnosed with autism. One night, we were chatting online and I tearfully asked him why God didn't answer my prayers for my sons.

Michael reassured me that God had heard--and yes, had even answered--every one of my prayers. "It's just that sometimes God's answer is ,"no." Or, "not now," or, "yes, but not in the way you prayed for it."

Once, Mike even dared suggest thatt God never promised us Heaven on Earth. "We get Heaven in Heaven, Traci."

Ouch. I think I half-hated him for daring to tellme the truth in the moment when I thought I most needed to hear a lie. But I also knew he was right. And something deep inside made me cling to that conversation.

Even though I've mostly lost touch with Mike, his words have literally been my light in the darkness a million times . He gave me a beacon, kept me praying, redirected my eye back to where it belonged--on God and His perfect promise to redeem us. To redeem my sons.

Somewhere along the way, I started listening a bit harder for God's answers. And yes, as Mike promised, those answers always came. And no, I didn't always like them. But I did learn to trust them.

Friendship. We rely on it for so much.

When I first realized that my children would face unique challenges in their lives and personal developments, the prediction that they'd struggle with human relationships was one of my biggest worries.

"Who will care for him when I'm not there?" The more I asked the question, the more the answer fled from me. We live in a world filled with people hardwired to interact with each other, to seek and forge friendships. And my children were being left behind more every day.

Indeed, how could my sons ever navigate the intricate maze of social interactions when they could barely tell me their names?

Nobody had an answer. God had a lot of "no, not nows" for me during that time. He was too busy working on the changes He needed to make inside my heart, helping me to become the mother my boys needed. The road from autism as a disease to autism as a developmental difference was a bumpy one.

Nobody I knew had ever been where we were as a family. So I prayed, talked to God, even cursed Him sometimes (he knew I didn't mean it). "Please God, bring the kinds of people into their lives who will get them, who will go that extra mile to unearth the amazing personalities lurking beneath my sons' tics and jerks and stone-faced facades."

Even allowing them to board a schoolbus required a leap of faith. Letting go and letting God stinks sometimes. :) I wanted the sky to open up and reassure me that my sons were headed to good places filled by people who would universally accept and respect them and their differences.

But it's a hard world. Children are seldom taught how to cope with other children who experience developmental challenges. Confidentiality laws prevent teachers from educating and equipping typically developing students on the difficulties suffered by their struggling classmates.

With no how-to-befriend-a -kid-with-autism guide to steer them, children will do what they're hardwired to do--avoid that which they do not understand. I can't blame them for that.

But I can pray, do pray. For them. My sons, their peers. And yeah, myself. :)

And today, God's hourglass on "no, not now" ran dry. My son Jamie brought the answer to many of my prayers and worries for him home, in the form of a poem. That he has even grasped the concept of creating poetry is, in itself a miracle. He has a language disorder.

But *what* he wrote is doubly miraculous.

So if you ever wanted to know what God's word sounds like, translated through the mind of a twelve year old boy with autism, then here it is, the answer to my prayers in the minimalist prose of one of God's perfect angels:


by Jamie Poff

Friends are hard
To find
When You don’t know how
To say hello

My friends
Don’t care
If my words won’t come
They don’t call me names
Or say I’m dumb.

My friend
just smiles
And waits
And share his snacks.
My friend Jacob
He always
has my back.

So I try real hard
To be a friend.
To say hello Jacob
When the words get stuck
And just won’t flow.

Wednesday, August 13, 2008

In its own time

When I first began blogging about the ressurrected relationship with God I've found in raising two boys with autism, I was so excited. That is, until I forgot my password for this blog, an event which, if you knew me, isn't so strange at all. :)

Then, this morning, I woke up and remembered my login information. Strange how the mind works, isn't it? Perhaps God had good reason for asking me to slow down and wait. Looking back as the strangeness that has been this summer, I'm sure He did.

I'll be putting up a couple of new entries a week until the boys are settled in their respective schools. After that, more often.

Until then, count your blessings. Sometimes they're quiet. Often times, they only whisper. But trust me when I say that they are there, waiting for the right moment for you to see them.

Saturday, March 22, 2008

Dream a Little Dream

I have a confession to make.

As self righteous as it sounds when I write it down in black and white, I sometimes tire of hearing the various life obstacles people blame for circumventing their personal dreams. I probably show such little patience for the blame game because I'm often guilty of leaning on those same obstacles to excuse my own apathy.

You see, I've always dreamed of writing (publishable) fiction.

One day my husband asked how far along I was in completing a painful and awfully close to home story that had haunted me for a while. While the story concept was ultimately hopeful, its progression began in tragedy.

I longed to know what would happen when two parents who loved each other very much were drawn into a bitter battle over how far medical science should go to intervene when their severely disabled child has an accident that sends him into a semi-vegetative state.

As the mother of two developmentally unique children, to say that the story hit awfully close to home was an understatement. I'd already been kicking myself for my stalling tactics. Beyond having the plot, synopsis and two agonizing to write chapters sitting on my hard drive, I'd wasted an awful lot of time doing everything imaginable to avoid diving into the guts of that story. And my darling husband's question hit a sore spot.

"How far have I gotten? How far?," I ranted. "You're gone all the time. I have three kids here, two of them autistic, and all of them crashing headfirst into puberty. The school dumps crisis after crisis on me and you want to know my f***ing word count?"

And if that wasn't enough ammo to unload on the poor man in one shot, I moved in for the guilt bonus. "And did I mention that the last time I actually had time to write, you used it up to go to Home Depot?"

Then that man my mother told me not to marry said the most vile thing any would be writer ever heard. "If you aren't writing its only because you don't want to."


"What a horrible, rotten, low-down thing to say!"

I stomped around the house for days, proving exactly how little time I had to spend creating. The flames of my rage drove me like a dervish as I whirled through every room. I cleaned closets, rearranged rooms, boxed up years of outgrown clothing, and saw the bottom of the laundry hamper for the first time since Monica's dress got stained.

What my husband had said to me felt like a very low blow. Even worse, I knew he'd said it because he loves me. But it was pretty hard to swallow the fact that someone who is supposed to love me would serve me up a big, fat piece of cold, hard truth.

Admitting to myself that my husband had made a dead-on observation regarding my stalling tactics just plain hurt. Blaming my children's struggles for my paucity of writing time had allowed me to turn my back on the real truth for years.

You see, not writing at all was far easier than to risk falling butt first into failure.

A new book fell into my hands not so long ago. It was a thin paperback, simply bound. Someone actually thought my nonverbal son might enjoy it. And he did, immensely. We both cried as we read that book aloud together.

The author's writing was spare in the way of haiku. I'd have enjoyed the work even if I'd failed to read the back cover copy. You see, the fact that this author's thoughts ever made it onto paper in the first place is nothing short of miraculous.

The Diving Bell and the Butterfly was written by a paralyzed, nearly vegetative author from what would soon become his death bed. After a catclysmic neurological event left him paralyzed everywhere but his left eye, he dictated this luminous contribution to literature to an assistant without speaking, signing, or even pointing to a single word.

He communicated his artistic vision by blinking a code with his left eye designed to tell an assistant what letter it was that he wanted committed to paper.

Read it.

If you still doubt that your life will never allow you to orchestrate a way to live out you personal dreams, then I promise you that you never will.

No more excuses. Dream a little dream. Today.

Dear Lord, I sometimes forget that its ok to spend time pursuing dreams of my own. I sometimes forget that your Word has commanded us to use our gifts well here on Earth. In the Bible you taught us that "each one should use whatever gift he has received to serve others, faithfully adminstering God's grace in various forms." (1 Peter 4:10) Please give me the skills I need to use my days wisely, striking a healthy balance between performing my daily duties and pursuing my personal dreams.


Thursday, March 20, 2008

And God Bless The Muffin Man, too.

Do you know the Muffin Man?

My son David does. He and the little pastry monster have been quite inseperable of late. Today is no different. My not-so-little darling has been belting out The Muffin Man's praises nonstop and with eardrum shattering gusto since four-thirty this morning.

That's eight hours. And by golly, by the time I get to the bottom of this page, I'm not only going to be ok with that fact--I'm going to thank God for it.

Given a typical life peppered by typically developing children, I'd probably have taken out the Muffin Man out with a meat cleaver by dawn. But raising David has been an adventure defined as anything but typical.

My son has autism. He's also thirteen years old. By most people's judgement, he is far beyond his nursery rhyme years. But when I say that David has grown up with autism, I'm not talking about the sometimes endearing set of quirks and oddities that define higher functioning persons who wear the same neurological label.

David has AUTISM.

Most days, no matter how I gild the seriousness of his condition with pretty words, there's nothing sweet or precocious about the neurological miseries he has endured. Much of his life has been a marathon of head banging, thrashing, screaming agony, the specifics of which he has been mostly unable to communicate.

But then, behavior is communication. Any tantrumming two year old can tell you that. And whatever it is my son feels during his self-directed rages, it has little to do with finding his happy place.

But children grow up, and as they do, their world views invariably change and broaden. Why would I think my son any different simply because he has autism? Why would I even consider limiting my hopes for his development in that way simply because he's wired differently?

Lately, something within him has shifted. We're seeing a softer, more approachable side of David. And in the absence of fluency with spoken words, he has developed a subtle language of his own. Most often his communications involve repeating familiar music such as nursery rhymes and commercial jingles in order to paint us a picture of what's happening with his internal landscape.

And even as I wrote the paragraph above, I wonder if I have lied. Was it really my son who changed, or was it me?

Perhaps I've simply learned how to hear him. In recent years, I have relaxed my insistence that he communicate in spoken words. Is it possible that in recognizing David's built in limitations, I became more willing to tune in to his more abstract attempts at connecting to others?

Today, my son has told me he is happy. I can hear the evidence of it in the score he has chosen to orchestrate his day. As long as he is singing this particular song, I know I am free to kiss, hug, and tickle him to my heart's content.

And if I close my eyes and listen hard, I can almost make out the individual words my son is singing.

Do you know the Muffin Man?

Do you know me, Mother? Can you hear by my song that for today, my world is comfortable enough for me to let you inside?

Yes, my darling, I know the Muffin Man....or at least, I long to know him.

But if I am to tell the whole truth, then I'm not sure that I do know David as well as my heart yearns to. At least not in the conventional kinds of ways any other mother might boast of knowing her son.

I can't say with any real certainty what David's favorite color is. I don't know what he wants to be when he grows up. He tried to tell me once. He said he wanted to be a toaster.

The words that I have so loved all my life have failed my child. But in accepting that shortcoming, I have also accepted that my child is so much more than a self indulgent reflection of myself.

He is my teacher.

David has taught me to hear beyond words. My son and the mountain of struggles he climbs each and every day in order to make himself known to us is also teaching me how to count the blessings I couldn't see before.

Dear Lord, Thank you for my beautiful son who is perfect just as you have made him. Teach me how listen better as he strives to achieve his unique purpose in Your Divine Plan. Help me learn the parenting skills I need to make him successful in his journey through this difficult life.