Monday, April 20, 2009
This family has gone over the hills and far away, to love their son and come to a place of accepting who he is even if it means embracing autism. Many phrases come to mind, "Whatever it takes," "what we'll do for love," and the one I hear recurrently from well-meaning friends, "I don't know how you do it." There were days, many moons ago, that honestly, I didn't quite know how I was doing it either. But what the Bible says is true, God's grace is sufficient, and we do.
So go with me here, if the strength to do what God calls each of us to do--be it autism or any other life circumstance--is not our own but His, then it doesn't matter who we are, but whose we are. If we are drawing from the same source, then any one of us could do it if we had to. Which is now my standard reply to that comment, "You'd be surprised what you can if God calls you to it." God's immeasurable grace and riches are of infinite supply. Many of us parenting autism, find new reserves of energy, creativity, stamina, and patience because God has allowed autism in our lives. What's so bad about that?
I do not wish to perpetuate the myth that these far flung adventures have any credence or magic power in and of themselves. Whether swimming with dolphins, racing with horses, or listening ad infinitum with headphones, I think the true value is in the journey not the destination. The journey for the parents is one of learning to relate differently and to accept (not change) their child. The parallel journey for the child is to discover who they are and where they fit in the world and how to trust. Having to go to greater lengths to do this with children on the spectrum, many parents demonstrate over and over again that love is the greatest motivator.
Is there a more powerful example than the cross? For God so loved the world that He gave His only begotten Son, that whoever believes in Him would have eternal life. The Easter message is one of sacrificial love. Jesus, who is love, was motivated to go where no man has gone--literally to hell and back--to save you and me from a fate worse than autism.
When we do anything resembling that, whether by affording some outrageous therapy, homeshooling 'til we don't recognize ourself in the mirror, or driving illogical distances to a qualified therapist, we are following Christ, sharing in his suffering, and becoming more like Him. Go ahead and spill yourself out for someone you love; you're in good company even if the world doesn't understand.
The book, The Horse Boy was released April 14th. The British family is described here in an article in the Telegraph and the trailer of the subsequent movie as well as the movie website here. Their journey makes a fascinating story. Admirably, the family has taken the proceeds of the book and started The Horse Boy Foundation and ranch outside of Austin. If you go there, know that you take your own therapists, your own child, and do your own thing with their horses and premises. They don't have a magic bullet or even much staff; you must come to your own terms with God's own will for your own life and family. No one can do that for you.
Don't all run off to Siberia or Austin, but do lend an ear to your child's unique pulse today and tune in to how God is calling you to love.
Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 1 John 4:6-8
There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 1 John 4:17-19
As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. Ephesians 4:1-3
The one who calls you is faithful and he will do it. 1 Thessalonians 5:23-25
Thursday, April 9, 2009
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 5:3-5 As 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
Wednesday, April 8, 2009
The title of the article, "A Roller Coaster to Acceptance of A Son's Autism," caught my eye because it was the very same metaphor I used to describe our adventures in autismland to a group of mothers of preschoolers (MOPS) recently. Their theme for the year is Adventures in Motherhood and each month's speaker was asked to orient their topic around a theme park ride.
Here's an excerpt from my roller coaster talk:
My house, and I’m sure some of yours too, has “never a dull moment.” Toddlers and preschoolers are by definition “on the go” which makes for an abundance of activity and unexpected surprises.We had a favorite song when my kids were preschoolers, a Scottish folk song by Bonnie Rideout. “Oh such a Hurryburry , oh what a din, oh such a hurryburry our house is in,” it went. Just when I think those days are gone some craziness happens again.
My kids are technically teenagers now, 14 yr old boy/girl twins. My son, Reid, has autism and maybe some other labels if we wanted to pin them on him—OCD, bi-polar, ADHD x 10. You name it, he seems to have a touch of it. So the hurry burry goes with the territory. In many ways our lifestyle is still as unpredictable as yours with toddlers—we are still working on language development, social skills, turn taking, sharing, using your words, even potty training. Autism affects social, language, and behavioral development—so mastery of those skills will be a lifelong pursuit for Reid.
Just last Saturday, the hurry burry set in when a friend dropped by unexpectedly (Reid thrives on structure). As I walked her to the curb, another friend walked by with her small dog. Our big dog saw the little dog through the window, which spurred a barking frenzy. Since Reid has hyper-sensitive hearing, this brought on a screaming jag and an explosive reaction. Doors were slammed and a garage door opener thrown. I am grateful to have some pretty exceptional friends who understand when I yell BYE and suddenly bolt for the door to salvage the house before my husband blew up too. Sound familiar? This is not unlike what you do with toddlers when you get off the phone abruptly, “gotta go” because of a loud noise from the other room.
I tell you all this not to bash my son or complain-- but simply to establish why I chose the roller coaster as my theme park. Most roller coasters start with a very long twisting line.
Our experience of parenting started with a very long wait –7 years of infertility followed by the twists and turns of adoption before…in total ecstasy we finally adopted TWINS—a boy and a girl no less!
Around 18 months, I had a gut feeling that something was not quite right with Reid and began asking questions of the pediatrician…wanting to be told that it was nothing. I raised every red flag on a checklist of autism symptoms.
Can you picture those hard, full-body restraint seat belts they lower over you and click into place when you get in a coaster car? That’s what it felt like when Reid was gradually diagnosed with autism around 3 years old. With no choice in the matter, we initially felt trapped, stuck, a little tricked by God, and like surely we were going to die.
Thus began the steep ascent up the first hill. We white knuckled it up every hill climb and blind turn, telling ourselves I can do this, freaking out inside, trying to fearing the future, trying to silence our second thoughts and all the "what ifs".
The slow, click, click, clicking sounds of the machinery remind me of how painstaking it is for Reid to master every new skill and developmental milestone . You can practically hear the gears turning in his brain and feel the traction that’s required to do what seems so simple for everyone else—utter a sentence, throw a ball, tolerate clothes on, blow out a candle, ride a 2-wheeler, tie his shoes.
Then the coaster goes into that free fall and drops-- along with your stomach.
Everyone around you is screaming; air is whooshing and machinery sounds seem to be turned on full blast. Reid’s body is often out of sync. He has a myriad of sensory integration issues. Background and foreground noise are one in the same for him. He hears fluorescent lights and I believe the neighbor’s television sets. When he is on overload, it becomes our reality as well. One thing can lead to another in rapid succession then, and there is no way to get off the ride.
OWHH! Then along comes a sharp turn. Your neck jerks and you are thrown around. For us, this happens when there are problems at school. We’ll have to find another one. Or when the daily phone call from school includes an “incident report” or “problem behavior” documented for the record. Turn after turn. Hang on!! When will this end?
(Can you tell I don’t like roller coasters?) Here’s why I think God allows them…or what I’ve learned about God from the one I’m on!
First thing I’ve noticed about coasters—even from the ground level where I usually just sit and watch-- is that even the people who love them, mostly love them at the end. When they are over. Waiting in line, they’re scared, anxious, tense, and insecure. It’s not until the final braking and coasting into the station that the smiles form across their faces. It’s only when they’re de-boarding the vehicle—taking all your belongings with you—that they say, “Let’s do it again!”
1 John 1:4 says “what we have heard, what we have seen with our eyes, what we have looked at and touched with our hands, we proclaim to you also, These things we write, so that our joy may be made complete.”
Our joy does tend to come at the end. God’s seems to indicate here that our joy will be complete at the end of the ride, not necessarily at every climb and twist and turn along the way.
Secondly, God doesn't leave us alone. I can count on one hand how many coasters I’ve ridden. One was at the Del Mar Fair. My daughter reallllly wanted to go on one. No dad around. You can’t put an 8 yr old on one of those rickety rides by herself so, I had to buck up and do it. In total self-sacrifice and protection, I said yes. I didn’t ride that one because I wanted to, but because she asked me to! I don’t think I would be on this ride-of-my-life if God had not asked me to take it. And, moreover, He goes with me, which really does make it all OK.
"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:5-7
Another time I found myself on Space Mountain in Disneyworld. The only thing worse than a fair roller coaster is one in the dark where you sit single file! This time we were with courageous boy cousins and a grandfather who pressured Allie and I into taking it. Papa Jim, her grandfather remembered it (from 30 yrs prior) and assured us it was very tame…nothing really. Well, we believed him until we entered the first dark tunnel. It was not tame! Allie was mad. She won’t trust Papa again…at least in theme parks.
Lastly, God doesn’t betray us. He clearly indicates that there will be trials along the way: in this world. He doesn't want us to be surprised; he doesn't talk us into things, He talks us through them in His Word.
"In the world you have tribulation, but take courage; I have overcome the world." John 16:33
"Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing" 1 Peter 4
"Just think—you don't need a thing, you've got it all! All God's gifts are right in front of you as you wait expectantly for our Master Jesus to arrive on the scene for the Finale. And not only that, but God himself is right alongside to keep you steady and on track until things are all wrapped up by Jesus. God, who got you started in this spiritual adventure, shares with us the life of his Son and our Master Jesus. He will never give up on you. Never forget that.
1 Corinthians 1:6-8 from The Message
Saturday, April 4, 2009
"Yikes! Good call, Reider." "You did the right thing to tell me." "You know what they say, where there's smoke there's fire." "That could have been dangerous." Reinforce, reinforce, reinforce. I did I tell you as I airlifted the blackened pot outside to the brick patio and instructed Reid to turn on the fan (whose noise he hates unless he flips the switch himself).
Are there any stranger events to celebrate, than the ones in which we rejoice? This was a good omen for future independent living ability; a sign of higher executive function; a reason to celebrate. I remember my similar elation the first time Reid got spooked to be separated from me at Target and called out, "Mom, where are you!" This morning marked a milestone. Who cares about the pot?
Several years ago Jim fell off a ladder while pruning trees. He was home alone with Reid at the time since Allie and I were walking the dog around the block. More alarming than getting the wind knocked out of him was the realization that Reid had not noticed his injury. Danger Will Robinson. Many times since we've wondered how to explain an emergency to Reid. Asked ourselves: does he know to get help? Could he describe what happened? Have we taught him about 911? All those "life skills" topics that aren't probably covered at school and don't arise often enough for repetitive teaching. Those critical skills required for independent adulthood.
After all the praise for doing the right thing this morning, Reid puffed out his adolescent chest and added, "we should call a plumber." Doh! Back to the curriculum to review those community helpers. It's all so confusing....police, firemen, AAA, plumbers. Who can keep it all straight?
Watch! Be alert! For you don't know when the time is [coming]. Mark 13:32-34
After the earthquake there was a fire, but the LORD was not in the fire. And after the fire there was a voice, a soft whisper. 1 Kings 19:11-13
Yet I call this to mind, and therefore I have hope: [Because of] the LORD's faithful love we do not perish, for His mercies never end. Lamentations 3:20-22
Friday, April 3, 2009
I actually struggled all week with procrastination. My husband's absence on a two week surfari and several extra writing projects (Form 1023 for a 501 C3, brochure copy, and website for Banding Together) have combined to erect a sizable writer's blockade in my mind. My expressive language may be delayed but the receptive is graciously intact; I am still reading my RSS feed! Listening to this talk by Jess Wilson's at the Greater Hartford Autism Speaks Walk Kickoff released the floodgates for me:
So, I pray this morning after and all month (since April is Autism Awareness Month), that people will take that momentous first step and be more aware. As Jess says, "awareness is not the end goal but the first step." Like a parent witnessing a toddler take her first wobbly steps, I audibly gasped to open a post yesterday on the Living Proof Ministry blog. To my surprised delight, Beth Moore, the mega-Bible teacher, acknowledged World Autism Awareness Day by sharing the testimony of a mom and a call for prayers in the comment field for others experiencing autism. I love it when worlds collide like that and I hear about autism (my one planet) in an evangelical faith blog (my other zone) or in my husband's surfing environmentalism sphere. Truly, that cross pollination is evidence of growing awareness.
I spoke a couple weeks ago to the Mothers of Preschoolers (MOPS) group that meets at our church. The topic they gave me was "Raising a Special Needs Child." Knowing there'd only be a few in the audience who'd consider themselves in that category (in those tender years), I tried to generalize my points to make them more widely applicable. At the outset, I asked for a show of hands, "how many of you know a child with autism...be it neighbor, cousin, nephew, or classmate?" I was stunned when 80% of the hands went up. Had I known, I might have prepared differently and shared our story with an emphasis on "ways to help a child with autism." Next time:)
As Jess Wilson mentions, this is why we tell our stories, it is why we blog, and why we don't hide in our houses. Our transparency and willingness to be vulnerable in our own circles of influence, are how awareness happens. If the world is ever going to be a hospitable place for our kids to live independently, we need to educate. If awareness is the first step, then the ultimate goal is full inclusion.
I've been convicted lately within our church of ways that I have chosen to cop out and take the easier path of hiding, rather than doing the instruction that must precede inclusion. We practice our own avoidance strategies don't we? First for survival, and then out of habit. For example, my family has not been to an All Church Retreat in 11 years. Reid has not been included with his same age peers in Sunday school since 3rd grade. At that point it seemed easier to keep him with us in the sanctuary, under the shelter of our wings, so to speak. To side-step the unstructured, choatic coffee hour, we've taken the liberty of letting him watch a video in an empty upper room. Not too many people are "aware" of this arrangement; Reid is truly out of sight out of mind, for them.
Granted, it is emotionally draining to be exposed all the time. And educators have a high burn out rate. Lately though I am feeling that in our family, we've reached a tipping point where our "hiding" is doing a disservice to Reid and to others. In the name of self-preservation, I have robbed our friends and community of powerful, life-changing interactions that God may have intended for their personal growth.
Biblically speaking, my son (and everyone of us) is indispensable to the body of Christ. For a time-- in my exhaustion, isolation, and vulnerability to the Enemy--I bought the lie that it was selfish for me to ask for extra staff, a buddy, or modifications in order for Reid to participate in church events. I am beginning to see that without realizing it, I may have denied others the opportunity "to receive the gift of Reid" in the words of our senior high youth director. The truth is: it is actually prideful of me to take care of it myself.
It's the morning after...what have you learned?
The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. 1 Corinthians 12:21-23
God made my life complete when I placed all the pieces before him. When I got my act together, he gave me a fresh start. Now I'm alert to God's ways; I don't take God for granted. Every day I review the ways he works; I try not to miss a trick. I feel put back together, and I'm watching my step. God rewrote the text of my life when I opened the book of my heart to his eyes. 2 Samuel 22:20-22 and Psalm 18:19-21 The Message
So if I, your Lord and Teacher, have washed your feet, you also ought to wash one another's feet. For I have given you an example that you also should do just as I have done for you. " I assure you: A slave is not greater than his master, and a messenger is not greater than the one who sent him. If you know these things, you are blessed if you do them. John 13:15-17