10. you have to ask them to reinstate a homework binder
9. music and sensory integration are withheld for poor behavior
8. parents are not welcome to observe class
7. school officials do not reply to emails
6. you have a pit in your stomach sending them each morning
5. child's not invited to be in the talent show
4. IEP meetings extend beyond 5 hours
3. you need two hands to count the incident reports
2. student comes home with bruises that match the weave in his sweater
1. child asks, Is God keeping me safe in the belly of the whale, like Jonah?"
'Nuf said. I have much to report and am grappling with how to best do it. Suffice it to say, for now, that we were painfully aware of autism during April's Autism Awareness month. DId you notice my breadcrumbs peter out? July may just as well be New Life Month then, for all the growth God has brought out of the fire we experienced. I am glad to be back in the saddle, writing and looking for His hand at all times.
But now, this is what the LORD says— he who created you, O Jacob, he who formed you, O Israel: "Fear not, for I have redeemed you; I have summoned you by name; you are mine.
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. Isaiah 43:1-2
Reid is acing his move to the Adolescent Program at his school. Yesterday marked his first full day upstairs with a new Case Manager and several new teachers. This very intentional, gradual transition has been orchestrated over the past 6 months. With his Student of the Week certificate from downstairs still in the backpack, he was ready!
The inaugural call from my new liaison reported some towering high points: Reid is peer-tutoring another student in reading. They were impressed to witness his fast facts on planets and continents. "All the teachers really enjoy him," she confided. And, on his way out of her class he heralded, "Thank you for the great class, Miss L!"
Wow, do I relish these moments as shreds of evidence that I have done something right. My latest mantra is that "manners matter." Lo and behold, he is using them right there at school. Small wonder, he got off the bus last week saying, "Thank you Curt" to the driver. That's my boy.
It's been said, "when Mama ain't happy, ain't nobody happy." Around here the reality is, if Reid ain't having a good week, ain't nobody having a good week. The degree and frequency of his symptoms are such that, as much as we try to correct the imbalance, the household can still seem to revolve around his behavior. I know my mood does.
When old behaviors recur, there is the temptation for Jim and I to live on pins and needles communicating anxiously at the end of each day with the precarious question, "how was Reid's day?" Remember the Admiral Boom on his widow's walk in Mary Poppins, "Banks, shouldn't wonder if you weren't steering into a nasty piece of weather..." Suffice it to say, we make up for the lack of weather to report in San Diego.
In the homeschooling days I had this verse stenciled on the wall of our "classroom" to remind me not to base my moods on anything but God's goodness; not to assess the day on anything except how close I was to the Living Water.
He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."
When I ask myself if fear takes over in the times of drought (like last month or the time before), I am surely convicted by the answer? Did I bear any fruit? (cringe) Most often, I shrivel up, hibernate, and wait for the "chancy bit of weather to blow over." My friends know when I don't call or answer; you can probably guess when there are no posts. The heat came and I was toast!
Happy times are here again and I am praising God for the evidence of joy and peace and victory in Reid's day (and the rest of ours.) So it is I also realize again the distinction between being thanking for the gifts rather than the Giver. An authentic Christian, doesn't forget in the dark what she knew in the light.
It's me again, wanting to know your innermost thoughts.
The holidays are upon us with all they entail. I thought it was genius to get our tree up while the in-laws were still here to help. Not sure they agreed but, it did set the stage for an evening of fireside charades and flute serenades. Everyone was supposed to put on 10 ornaments before they left the room. Let's just say, compliance was an issue.
Nonetheless, a record was set; we were decorated to the hilt before the calendar turned to December. Only the most observant neighbors will notice the odd strand of blinking lights on the balcony; only Allie knows how to regulate the highest string of tree lights so they do not strobe. I love that she turns them on every morning before I come down.
You first this Friday...
Is there something you dread about the holiday season?
I never thought anything would trump autism in terms of the orbit of helplessness and wearying stress it can launch. I was wrong.
Learning Allie was quarantined in a Chinese hospital for swine flu did. I physically shook with tremors the first night after getting up off the floor in immediate, desperate prayer. As we gained information, the conjured up images in our minds were replaced with facts about her welfare. Foreign, yes. Scary, yes. Uncomfortable, at times. Dangerous, no.
You notice I haven't written in awhile. I am an internal processor so, apart from dispatching a mighty prayer team, I cocooned myself until light was visible. At a certain point, I became aware of how many blessings were coming as direct result of this trial. I considered starting a whole new blog to itemize them!
Lo and behold, she is home and internally processing herself--the numerous stretching experiences, cultural awareness, faith building, and fellowship that went down. For the most part, I will let it be her story since she is well able to tell it. And yet, I can't pass up passing on a few proven-once-again spiritual principles:
1. God is able to do immeasurably more than we ask for or imagine.
We sent Allie on this 9th grade class trip to broaden her world view, benefit from full immersion in a foreign culture, and expand her personal threshold of independence. Parents of last year's travelers said the China trip changed their kids. We got way more bang for our buck!
2. "When the praises go up, His glory comes down" (to quote a rockin' song by Karen Wheaton).
People from Yichang to Pittsburgh to Solana Beach were praying for these kids and their parents at all hours of the day and night. Intercession opens the floodgates for widespread blessing. Kids bonded with teachers; unlikely life-long relationships among peers are cemented; moms met back home for group hugs; marriages are being strengthened; international contacts are multiplying; nurses named Angel appeared!
3. Trials transform us.
John Knight writes a meaty blog covering disability ministry at Bethlehem Baptist Church in Minneapolis as well as applying Biblical truth on the Sovereignty of God to issues he encounters firsthand as a father. Wouldn't you know, he posted this today--the first day I have signed into blogger.com in 19 days.
A peculiar transformation happens as the focus shifts from agonizing about the experience of a multiform hardship that is thought to await them to the actual experience of living with this particular human being and the multiform way in which they find themselves managing and growing in the process of facing difficulties as they actual (sic) encounter them. Theology, Disability and the New Genetics, p. 194 by Bernd Wannenwetsch
We don't often get to choose the trials which transform us. For some, it will be autism, for others divorce, quarantine, cancer, loss of limb, loss of job, or lost on a hiking trail. Whatever the challenge, all we can choose is how we respond. The degree to which we embrace it as God's agent for transformation in us, is the degree to which we grow spiritually.
Praise GOD! Allie is home, safe and sound, bigger and better, for the trial she endured, as are we. I am grateful for the joy set before us, that it flows not just from autism in our family but also from international travel and fellowship with so many faithful friends.
Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Hebrews 12:1-3
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
My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:13-16
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
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
Reid is acing his move to the Adolescent Program at his school. Yesterday marked his first full day upstairs with a new Case Manager and several new teachers. This very intentional, gradual transition has been orchestrated over the past 6 months. With his Student of the Week certificate from downstairs still in the backpack, he was ready!
