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
Ahhhhhh........the sigh of relief that comes when you know your child is in competent hands. The shoulders drop and regular breathing resumes. I just carried a tutor's bags and boxes upstairs and came back down to hear their joyful laughter and productive movement through the ceiling. The assurance that for 2 hours, you can safely invest in some uninterrupted personal time is as much the value of the therapist as the therapy itself. The question is whether to zero in on Bible study homework, pay some bills, savor a cappuccino, or start dinner....hmmmm, what will it be?
So many caring and gifted teachers, aides, and therapists have blessed us over the years. With remarkable optimism, skill, and stamina they have deposited buckets and buckets of energy into Reid. An osteopath found it palpable once in an exam, "I can tell he's had some good work." Once upon a time, I took pictures of each hire and laminated them on PECS cards so Reid could learn their names and keep track of his weekly calendar. It's incomplete but here are a few I found. God BLESS them everyone...the saints of God...
April 4
Teachers,Aides, and Therapists
"But as for you, be strong and do not give up, for your work will be rewarded." (2 Chronicles 15:7, NIV)
"Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain." (1 Corinthians 15:58, NIV)
Pray that those who teach and provide therapy will feel successful and rewarded by the Lord for their efforts.
When I say provision do you think of food? Ordinarily I would too, though "I'm not a big eater." Ha!
However, let me go on record as saying there are more important provisions than food. When I look back at our journey through autism thus far, there are some pivotal people who the Lord has provided for us at just the right time in truly miraculous ways.
Danielle, was the first case manager for Reid's home program. She became way more than that, like a counselor and trusted advisor. What amazes me still is how we had met in Bay Area through an early mentor mom to me, Irma Velasquez (she has since started Wings Learning Center). Reid had had a facilitated playdate with her son, Aaron, which Danielle facilitated. We connected on some gut level and remembered each other. In less than a year's time, we both were planning a move back to San Diego. Danielle confided that she might also be relocating to work at the UCSD Autism lab.
Timely enough, we had a shoe-in for our home program --someone I already trusted fully. Unbeknownst to me at the time, Danielle had gone to our church as a college student. Our shared faith further bonded us and blurred the lines of professionalism. Suffice it to say, I was very comfortable with her in the house training our team and spending long hours with Reid. We cried when she left at the acknowledgment of God providing exactly what we needed in those early days.
Carla, was part of the glory days on Danielle's team. We hired her with the same gut feeling that she'd just plain be good. A Canadian expat, she worked part-time as a guidance assistant in our local district. Little did we know what mysterious ways the Lord was working in then. I will never forget the first time Carla and Reid came into the kitchen after their closed-door play session. They were singing little Sunday school praise songs, which were Reid's only words at the time. I was flabbergasted to see that Carla knew them! God had provided.
We cried when she drove off for Florida in that orange Penske truck, not knowing that she'd be back. The amazing recurrent blessing of Carla is that she moved back for another year under very different circumstances for a Masters in Real Estate. The gift of that year was for me as much as Reid. It marked a million milestones in both our lives and moved me forward in writing, mothering, and sisterhood, for that is what we've become.
Kathryn Mary, cousin Kat, has been a similar kind of gift these past 5 months. She has been friend, confidante, family member, sous chef, and breath of fresh air to all of us. For such a time as this, she has helped us shift our focus to Allie's imminent college decision; she offered a naturally occurring novelty of socialization for Reid; and without realizing it helped us raise the bar on many habits--whether wearing pajamas, shutting the bathroom door, or flossing more often. She left a week ago and we cried then too.
As I near the completion of Kelly Langston's Authentic Christianity Challenge, I think being authentic is acknowledging that the best things in life come from Him. In so doing, I also project that what He's done before, He will do again. The Lord will provide.
Who or what has God given you that you couldn't have arranged yourself?
Every good and perfectgift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:16-18
So then, don't be afraid. I will provide for you and your children." And he reassured them and spoke kindly to them. Genesis 50:20-22
And who knows but that you have come to royal position for such a time as this?" Esther 4:13-15
How many things do you hear in a day that are questionable or just not true? Our culture could stand to be corrected on many a score.
I was chilling with Reid after school watching Hercules when I hear this, "How do you kill a god?" Hmmuuh?....wait a minute! Red flag. Falsehood. I was glad to be in earshot and slip in the edification for the record, "Reid, we believe in the one true God who was and is and is to come. He existed before the beginning of time and is Alpha and Omega." I could have gone on. Actually, He wasn't created and so can't be killed. Death entered the world as a consequence to our disobedience in Eden. Further, God defeated death when Jesus died on the cross, was buried and rose again. "Just so you know."
"I am the Alpha and the Omega," says the Lord God, " who is and who was and who is to come, the Almighty."Revelation 1:7-9
Foundational Christian principles (aka the Bible) are no longer be gleaned by osmosis. In this day and age, the tenets of Christianity are not in the underlying fabric of our society. Quite the opposite. One has to go out of their way to learn the gospel. It is not in school curriculum, not assumed by our leaders, not foundational to the way business is done.
A friend of mine was carpooling a 5th grade classmate of her daughters. Having heard a reference they made, the affluent, educated girl inquired unabashedly, "What's the Bible?"
My niece recently found herself surrounded by misled followers of scientology. She'd leave the stifling room to call or text me at points when the propaganda became thickest. A check in her spirit told her something was awry. As she became inundated with lies and spiritual mumbo gumbo, we unraveled them by phone. In every instance, the Bible had a counterpoint to the lies they were putting forth. I found myself grateful for years of study and sound teaching to call upon with her. Informed or not, I believe the God-shaped vacuum in each of us resonates with truth and rests peacefully when it's presented.
I'd like to lay a Pervasive Developmental Disorder diagnosis on our society when I see disregard for the authority of Scripture and genuine ignorance of what the Bible claims. A child with PDD doesn't just wake up from a nap knowing how to smile; turn 2 and begin talking on cue; or maybe ever understand how feelings get hurt. He needs to be intentionally taught every single thing--from the meaning "yes" to how to read facial expressions to modesty. In raising Reid, I have found that stating the obvious in a calm, voice with no affect or judgment as if he were a visitor from another planet works amazingly well. I can't blame him for not knowing or for the way he learns. What I can do is fill in the blanks and tell him what he needs to know to live here. Likewise, maybe what the world needs now--is just a little bit of truth sweet truth.
" Sanctify them in the truth; Your word is truth.John 17:16-18
Being an authentic Christian requires knowing what the Bible says well enough to articulate it to others in the teachable moments. The world around me seems increasingly full of lies, which no one recognizes as such. Like checking for counterfeit money, we need to be holding a lot of things up to the light of Scripture...and then showing people how it pales in comparison to the real article.
One of the best exercises of writing this blog for me, has been the habit of selecting a verse for each post. As I make a practice of doing that, it's amazing how the Bible really does have something to say about every circumstance. I'd love to host a show where the audience would throw out a scenario and some star (but who?) would name a relevant text from God's Word. It would be educational!
"my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it. Isaiah 55:11
Designed by Jonathon Feinberg, a wordle is a computer generated collage of text made instantly at the wordle.net site. Here is one made from the text of my blog. A fun toy for the hyperlexic ; try it with our kids or by yourself! It could be typing practice, thank you note writing, scripture memory experiment and a productive stim all at once. The possibilities are endless.
Reid is smitten with writing lists right now--lists of his favorite movies, lists of Saturday's events, lists of book authors, lists of Barney episodes. Wonder if wordle.net on his dock would be as compelling as Youtube?
When he was first diagnosed by a doctor in Berkeley, she told us in her gracious, holistic, bohemian way, "This is a kid who who loves words. Loves the sound of them falling off his tongue and the look of them on a page." I appreciated her child-centered approach and the fact that she did not read us DSMV codes and dire prognoses but rather observed Reid keenly looking for his uniqueness and celebrating him with us--at least for a few minutes. Those minutes were a gift, like sitting with a painter to hear him describe the inspiration of a piece de resistance.
Later, in actual fact, she passed us off to an associate who had done the battery of pragmatic tests and delivered the obligatory, more doomsday recommendations and findings. It is hard to forget--but I won't repeat--certain phrases she put in her report. Good thing I have trained myself to focus on whatever is praiseworthy and upright! Philippians 4:8 has been prophetic ever since we chose it as a wedding verse. Twenty one years later, I see how God knew Jim and I would need to apply it many times over in our life together.
Words!
"...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." Phillippians 4:8
“As for God, his way is perfect; the word of the LORD is flawless.” Psalm 18:30
Heaven and earth will pass away, but my words will never pass away. Matthew 24:35
Are you participating this month in the Turning the Tide! Prayer Thrust? I've been praying the prompts that Children of Destiny has provided for each day. Have you printed out the calendar? Or are you using the pop-up windows online each morning?
They do an awesome job leading us in corporate scriptural prayers that are relevant and specific. Praise God for the Systema's! Bless them with continued wisdom and stamina. Yesterday's theme "Healing for Broken Hearts" got me thinking...and is as good a template as any for blogging.
The Lord surely can mend a broken heart. Indeed, it is the expressed reason why He sent Jesus to earth. The Isaiah 61:1 verse, He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners” prophecies Jesus arrival and declares the Mission Statement of His ministry. I remember learning this verse in Stephen Ministry training as the foundational reason Christians come alongside others, in His name, to offer comfort and healing. Further, we are more effective and empathetic doing so when we ourselves are wounded healers, with our own firsthand experience of having a broken heart bound up, healed, mended.
This side of Heaven, there are a myriad of reasons our hearts break. Autism is but one. Crushing experiences throughout any one lifespan run the gamut from not being invited to prom...to not knowing a parent...to harsh words from a spouse...to cancer, poverty and murder. Certainly in this country, our struggles are all relative. On the one hand, I think we can get out of the brokenhearted mode by being grateful for all that we do have--the joy of celebrating hard won victories, the laughter with other moms, the blogging community, the incredible availability of services, the benefit of articulate adults on the spectrum, the time we live in (post-Bettleheim) and so on and so forth....
I need to guard against complaining or using autism as a scapegoat for all my problems. In our household, we are starting to recognize that this may be a pattern to correct even in casual conversation. It can sound like this:
"Are we going out of town for spring break?" Can't...autism. "Will we be flying cross-continent for Thanksgiving?" Can't...autism. "Why don't we replace the ripped leather trampoline, I mean sofa?" Can't...autism.
Autism becomes the excuse for everything, the reason we don't do anything! And then we become dangerously close to being in bondage to it. And we are not. We make choices based on the needs of each individual in our family--Jim needs gluten-free food; Allie likes to sleep in; Reid can only fly so far; I hate the heat.
"Who left the car door open?" REID!! "Who forgot to flush the toilet?" Reeeid! "Who spilled the water over here?" Reeid!
Blaming autism can feel awfully close to blaming Reid. That's not fair or fun or accurate. Truth be told, lately it is not always him. I give a silent cheer--and so does he--when someone else slips up and he can point the finger at their minor offense.
I have a soul sister friend who is much better at separating her child from the his disorder. At our most aggravated junctures in the last 12 years, we call each other to vent. Her common opener has been, "I just gotta say, I hate autism right now." Not once have I heard her attribute her frustration to her son. Sometimes I must confess to at least mentally saying, "he's driving me crazy." Hear the difference? It's the old maxim with a new twist: Hate the sin, love the sinner.
That's part of it, the other part of it is freeing up our kids to have new wineskins as the Bible calls them, rather than holding them to old ways of coping. Raising the bar and filling in the old notches, so to speak. Are there ways that my expectations (or habits) hold Reid in an old behavior pattern? Small example: Reid used to wait for me to open the garage door for him. He insisted and waited as long as it took. Well, one day I was a couple minutes late for his bus. I pulled up to see the garage door open. Given the necessity, he had been able to key in the code and let himself in. Note to self: now he can open the door for all of us, carry in groceries, and get the mail.
Back to mending the broken heart. Fortunately or unfortunately, we don't get to choose our own category of suffering. A Sovereign Lord does that, all the while ensuring that He will work it together for good and never give us more than we can bear. What we can control is what we do with the particular challenges He allows in our life, how we respond, what we learn from them.
Our first reactions may not be our ultimate response. At any time along the journey, the Lord invites our hot tears and waits with His hand extended for us to give Him our hearts. He is like a father who's willing and able to fix a broken toy, if only the child will hand it to him--and part with the fractured pieces. Turning our broken hearts over to God in prayer is the first step to being mended.
I learned this the hard way when Reid was being diagnosed. We had moved to Chicago for what ended up being 12 freezing months. In what felt like a cruel joke, Jim was traveling back to California Monday through Friday; my mom was newly engaged and pre-occupied in head-over-heels infatuation; and I knew not a soul in this new town. My dreams were being dashed by total strangers who'd arrive at the doorstep, assess my 2 1/2 year old with a list of deficits and a grim prognosis, then leave never to be seen again. Suffice it to say, I cried myself to sleep on the sofa regularly.
Heartbreak turned to anger. I was mad at Jim for deserting me, mad at my mom for being happy, mad at the therapists for judging my little pride and joy, and ultimately mad at God for letting any of this be. I felt tricked like he had pulled a fast one on me while I wasn't looking.
Somewhere along the line in that isolation, I also realized it would be shooting myself in the foot to stay mad at God. Clearly, He had more power to help me than my mom ever will. At that time, He seemed a bit more attentive than my husband. Certainly, He was more knowledgeable about the course of action we needed to chart than the best specialist. I think I actually realized this faster and more acutely because I was separated from my usual support system. I was left alone with the One with whom the buck stopped. Not a bad place to be, actually!
Blessed are those who mourn, for they will be comforted.Matthew 5:3-5As I moved closer to Him in prayer--or rather stopped backing away in anger--I was happier. To be in His presence always feels good. Worship and prayer put us there.
Psalm 120 gives us clear permission to vent our distress and misery. God can take it. Not only that, He is close to the brokenhearted. Let it out! I just returned from our Maundy Thursday service so am freshly impressed that He is the One who endured watching His own precious Son eaten alive by the angry mob. This God can sympathize with every affliction known to man. We have something in common; we're made in His image with a soul and a heart that has the capacity to love, feel, and therefore break with sadness, regret, and loss.
The Psalmists approached God with every single human emotion--distress, desperation, vengeance, impatience, gratitude, anger and hatred. The fact that the Psalms are included in Biblical inspiration proves that honesty is not inconsistent with worship. Remarkably, something about relinquishing every single heart wrenching feeling results in His making us whole again. We were made to worship and be in His presence. When we do, our attitude and our perspective changes.
Psalm after Psalm begins with self and ends with God. Our emotion, His truth. Our honesty, His promises. Our pain, His comfort. Our weakness, His strength. Our broken hearts, His healing. Our suffering, His redemption.
I know it is OK to woe and yet, I don't want to be so "woe is me" that I make autism out to be worse than the horrific things happening around the globe that also break God's heart. Cancer, slavery, torture, paralysis, murder. Would any of us prefer to be living in those conditions? I love my life and how God has redeemed it; and I pray there is joy that comes through the end of each post even if I begin with brutal honesty. If not, read a Psalm instead! There are 150.
“The LORD is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18
You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.Psalm 56:8
I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. Ezekiel 36:25-27
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:25-27
I have heard your prayer and seen your tears. I will heal you..." 2 Kings 20:5
I have just discovered a new blog, Mama on the Edge. Mama Mara is hilarious and gut wrenchingly honest. I laugh until my eyes water at posts like The L Word at our House is Lithium and Anatomy of a Morning. The brutal reality of them convinces me on some days, that I am not alone, and on others, that it could be worse. I'm a little taken aback actually. What is it about tragic comedy that appeals? Is it just me?
Laughter is good medicine, all agree. Mara gives me a channel to tune into for a healthy release. I had a morning like hers where Reid and I were in a total stalemate while the bus honked at the curb. The internal pressure and helplessness of not being able to control his actions--namely, get him dressed and on the bus--has to go somewhere. Better to come out in laughter than in anger. It has been said, and regrettably, I can vouch that the worst kind of violence stems from helplessness. I just don't feel at liberty to express my rawest feelings. Inhibited am I. Mama Mara does it for me. She is an online surrogate where we can all do a little corporate ranting.
Laughter, especially at ourselves, releases us from all sorts of paralysis--pride, control and pure tension. Of course, if we're not laughing then we're crying. And that is way more debilitating and unattractive.
In Chicago, my personal year in the desert, Reid was diagnosed and my husband was gone Monday through Friday on business in San Francisco. Mind you, we had just moved from California for a job that was too good to refuse. In less than a month, he was basically commuting back there by plane, while I remodeled and listened to people ruin my life by speculating what was "wrong" with my precious toddler--out loud in front of my other precious toddler! Go figure. (I'm grateful it was not 40 years.)
I would alternate between crying myself to sleep on the couch and watching Mary Tyler Moore for solace. You get the connection? Picture Mary pitching that blasted package of meat in the proverbial basket. (I know it was a grocery cart.). Her undying optimism couched in cynicism and satire, made me laugh. Everybody sing, "We're gonna make it after all...du do dewt do...dute."
One of my favorite books is about a woman fairly trapped in the 50's with 10 kids, no car, and an alcoholic, abusive husband. Sounds like a masochistic tragedy until you read the book, The Prize Winner from Defiance Ohio: How My Mother Raised 10 Kids on 24 Words or Less. Written by one of the 10 kids, it is the funniest book I've ever, made all the better 'cause it's true! The mom, Evelyn Ryan, is a prototype of modern day mommy bloggers, maybe specifically, autism mommy bloggers. Her creativity, wit, and writing acumen lift her out of impending doom. She cranks out fabulous advertising jingles, enters them in the popular contests of the day and wins! She wins BIG, to the tune of paying off the mortgage and putting kids through college. It is a tragicomedy filled with redemption, love, and hope. As always, the movie doesn't do the book justice.
Is there a tragicomedy in the Bible? Job is tragic but I'm not sure how funny he is. Reading Job makes most of us realize we have it pretty good (no leprosy, multiple family deaths, loss of livelihood). His lifetime of belief offers principles on how to get through the difficulties we all face in life--some for days, others for years at a time. Beyond Job, the Bible is laced with humor, real true grit, and way more hope than Mary Tyler Moore. God still considers David a man after His own heart, despite an affair on his roof and the arranged murder of the woman's husband (2 Samuel 11). Saul is taking a leak in a cave--do we need to know this?--when David cuts apiece of his robe but doesn't kill him as easy bait (1 Samuel 24). Sarah laughs in God's face (Genesis 18 ) to learn she is pregnant at age 90! Now, that's tragically funny.
A joyful heart is good medicine, but a broken spirit dries up the bones. Proverbs 17:21-23
Consider it all joy, my brethren, when you encounter various trials, knowing the testing of your faith produces endurance. James 1:1-3
He makes the barren woman abide in the house as a joyful mother of children. Psalm 113:8-9 http://www.pajamamania.com/product4601.html
Autism is everywhere isn't it? I almost feel trendy having it in our family. McCain's talking about it; Obama's talking about it; Hilary's talked about it; it's been on the cover of every major news magazine more than once. Perhaps we have Autism Speaks to thank for that. NPR has a score of radio shows on the topic. Just in the This I Believe syndicate show there are 19 essays that relate to autism. I am working my way through them all. And who can even count the number of autism bloggers of every color and creed?
This was not always so. When Reid was first diagnosed (1997) I called Focus on the Family, the revered support organization for Christian families. One of the most isolating moments in our journey was their lack of awareness and total dearth of resources on autism. They have since added one book by Lynn Hamilton...albeit with a disclaimer. Eleven years ago the enemy used it to make me feel as though Christian families don't experience disability which is totally false! In fact, this blog is a culminating result of that alienation and my attempt to make better (and not be bitter) the Christian community's response to what God has allowed in our life. We need help from within to address the needs of families with autism who are attempting to apply Scripture and Biblical principles to the particular life trial that autism can be. Just as much as politics, sex, and the environment, autism should not silence the church.
"I ask you to receive her in the Lord in a way worthy of the saints and to give her any help she may need from you..." Romans 16:1-3
"...though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." 1 Peter 1:5-7
“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:4
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.
Ahhhhhh........the sigh of relief that comes when you know your child is in competent hands. The shoulders drop and regular breathing resumes. I just carried a tutor's bags and boxes upstairs and came back down to hear their joyful laughter and productive movement through the ceiling. The assurance that for 2 hours, you can safely invest in some uninterrupted personal time is as much the value of the therapist as the therapy itself. The question is whether to zero in on Bible study homework, pay some bills, savor a cappuccino, or start dinner....hmmmm, what will it be?
