Saturday, September 20, 2008

Blazing a Trail to College

More and more articles are appearing about special needs students bound for college including this article from the Wall Street Journal front page. Patricia E. Bauer hasn't missed a one on her site. NPR has several broadcasts in the last week about Roger Diehl at my alma mater, University of Wisconsin-Madison, including a Q/A from callers with similar ambitions and many practical resources.

Josh Muggleton, a young man with autism, is sharing his college experience at St. Andrews in the UK online here at Yeardot. The book Aquamarine Blue 5 edited by Dawn Prince Hughes includes personal stories of many college students with autism. My hat is off to these trailblazing writers who will change the future on two levels. First, with their courage to do something relatively unprecedented and second, with their willingness to be vulnerable and document it for the benefit of those who follow.

Have you ever thought where we would be without the Bible? Those who wrote it had free will like us, and could either have followed God's call or chosen their own. Fortunately for all who came after, they chose to document the life of Christ and the experiences of His chosen people in the Old Testament and the unending mercy of God our Father. They did this all without Microsoft or Apple, internet or telegraph! Painstakingly and unmistakably, they shaped the experience of all of history. Now we are accountable to what has been written.

They raised the bar.


All Scripture is inspired by God and profitable for teaching, for reproof, for correction, for training in righteousness... 2 Timothy 3:15-17

Go now, write it on a tablet for them, inscribe it on a scroll, that for the days to come it may be an everlasting witness. Isaiah 30:7-9

Tell it to your children, and let your children tell it to their children, and their children to the next generation. Joel 1:2-4

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:10-12

photo credit:
www.bouquetproductions.com, http://cims.hispanictips.com/uploads/2008/06/college.jpg

Friday, September 19, 2008

iiiyeyeyiiiii




ipod true love
iphone motivation
imust learn self control
















Even Allie, of course Allie, who is the golden retriever in our family (according to John Trent and Gary Smalley's analysis of personality types in The Treasure Tree), felt bad for Reid who was close to tears watching the 3 of us--the entire rest of his family except the dog--load apps from the app store, phone numbers in the contacts, and snap photos with our new iphones last week. (Ok, last month.)

"He's so sad," she whined as we went to bed guilty and gloating over our new state-of-the-art functional toys. Reid went to bed with the gorgeous Apple packaging in which the phone had arrived. The boy version of a Tiffany's box, I suppose. With the embossed lid and superreal, actual size phone pictured on it, I thought it was a good consolation prize.

Let me explain how we become so well-endowed with Apple products. Jim's office switched over so he got his iphone as a business expense. Allie is enamored with all things cool--being 14--so saved her money to pay the for half the cost. We figured we would cover the usual and customary cell phone cost and she could earn the cool factor. I am not as cool. What I am, is clumsy. While riding bikes home from our pool, I took a spill onto concrete at dusk and my modest, little, former phone broke in half. So, you see, in order to reduce our carbon footprint and save gas money, Jim just picked up a third one for me while he was at the Apple store. (music maestro: Three is a magic number, yes it is...)

As a second disclaimer, let me defend our apparent cruelty in denying Reid one. I definitely feel like One Mean Mother as Melody at Slurping Life describes.

Reid has a little issue called impulse control. In the recent past, he has thrown more than one ipod across the room in a fit of rage shattering them on our non-porous slate floor. He has run ipods under the faucet to clean them. He has peeled them apart like deconstructivist artwork. Therefore, we are calmly and intentionally using this as a (hopefully) highly motivating life lesson that you must 1) take care of property and 2) earn the responsibility of having nice and nicer things. Isn't an iphone nicer than an ipod?

So, you can pray for Reid. It is hard work for him to control his impulses. The spirit is willing but the flesh (and brain chemistry) is weak. When Carla moved back to Canada she left her AT&T phone with us, thoughtfully suggesting that we could let Reid have it. "If you take care of Carla's phone then we'll talk..." I reasoned. "If you take care of the library CD's (and don't peel off the annoying stickers that cover the liner notes) then we can talk..." On and on it goes.

Boy, do we ride a fine line between raising the bar and asking too much. As I was explaining it to him, he was chewing the antenna off of Carla's phone. I wonder how much of the compulsive, impulsive, destructive behavior can he control? And how much will we have to accept as a reality to be managed, damage controlled, and run interference around? These are the rhetorical questions which confound our parenting beyond the norm.

This past summer before our arrival at a rental house in the Outer Banks, I inquired of the rental agent, "Could you remove all the videos and DVD's before we arrive?" No, was the short answer. I pressed a bit by explaining our family dynamic. She offered, "Why don't you just put them in a closet when you get there?" I thought, "WHY DON'T I JUST PUT THEM IN A CLOSET???!!! Are you kidding me?!!???!?! If it were that easy, lady, why would I be calling you?!? Do you honestly think I'm that stupid?!??! and he's that easily duped?!?!?!? This is a kid who MUST have videos. For cryin' outloud, he can smell electronics in the house next door. He sniffs 'em out of any garage, supermarket, lock box, or car trunk. This is not a run of the mill toddler; this is a 14 year old, intelligent, manipulative, adolescent, young man with an obsession!" "Thanks anyway," I said. We'll manage.


A fool gives full vent to his anger
, but a wise man keeps himself under control. Proverbs 29:10-12


No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it. Hebrews 12:10-12


To one he gave five talents of money, to another two talents, and to another one talent, each according to his ability. Then he went on his journey. Matthew 25:14-16

photo credit: www.dannyfoo.com, www.pushpullbar.com/ forums/attachment.php?att..

Thursday, September 18, 2008

Rescued!

Have you seen Walter and Christopher Marino in the news by now? This unbelievable story of a father and son drifting out to sea for some 12 hours and surviving to tell about it brings many things to mind for me: Reid's love of water; the therapeutic value of water; the false sensation of comfort that floating offers; the benefits of knowing what motivates your kids; the power of staying engaged with them through thick and thin; the absolute might of the ocean; the uncertainty of life; the redeeming value of movie scripts; the universal will to live; and of course above all, God's sovereignty.

It to me seems that our kids have swarms of guardian angels hovering around them. I know Reid has darted through some gnarly encounters unscathed. Thus far, the Lord has honored my regular prayer that Reid would have a hedge of protection around him. Since they were babies, both my kids have had a small, plaster angel cherub hanging over their bedroom door from a ribbon. On the ribbon is handwritten the "911" code verse, "For He will command his angels concerning you to guard you in all your ways." Psalm 91:11

Enough harrowing experiences have brought me coronary distress, that people now quizzically wonder how I appear so calm. "Practice," I say without eye contact, for I have not the luxury. My eyes are always on the make for my flitting butterfly who has not yet been stung by near misses either crossing a street or riding a bike( in the center lane up to our pool in stubborn refusal to ride single file along the curb). Lost at Target; lost in the neighborhood; lost in the local county park; lost at the Tate Museum in London, Reid is found every time but, not always in short order. My knee jerk reaction now is to pray and to enlist Allie. She or I always find him. Even when we alert the authorities, it is usually her sixth sense that reveals his mystery location. And usually there is a logical explanation which we decipher after the fact when my blood pressure returns to its normal low.

The most frightening situation to date was this summer in Cape Hatteras when Reid opened a moving car door and bolted across Hwy 12, an infamous single lane freeway, in an irrational tirade. How he did not get creamed into the concrete I will never be able to explain outside of God's grace.

Watching the Marino family interviewed brings tears to my eyes, tears of recognition and empathy for the complexity of their emotions and their daily reality. Siblings rock. Good for his sister, Angela, for knowing when to call the earthly 911. Good for the insightful anchorman for crediting her and using people-first language addressing Christopher by name.

Living near the ocean makes me acutely aware of its beauty and its danger. The ocean is so like its Creator. I love the ocean. And I fear the ocean. I am in awe of the ocean. Those are concrete realities. In a similar way, I love and "fear of the Lord." Just this past summer, I was momentarily caught in a riptide and surprised by how quickly I panicked. A week later, an avid boogie boarding friend of mine had to be rescued by a lifeguard in front of her 2 teenage daughters. In addition to being embarrassed, she was really frightened. Afterward, we commiserated over all that flashes before your eyes in a moment "at sea." I cannot begin to imagine the hours at sea that the Marino's endured.

I am also touched by the dad's flood of gratitude. Do we express equivalent joy and exuberance on Easter morning (or daily, for that matter) at the promise of being rescued from eternal death? One day we will know exactly how he felt. Jesus, not the Coast Guard, saves us all from the clutch of death.



That if you confess with your mouth, "Jesus is Lord," and believe in your heart that God raised him from the dead, you will be saved. Romans 10:8-10

"Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. Psalm 91:13-15

Reach down your hand from on high; deliver me and rescue me from the mighty waters, from the hands of foreigners. Psalm 144:6-8

From six calamities he will rescue you; in seven no harm will befall you. Job 5:19

The angel of the LORD encamps around those who fear him, and he delivers them.
Psalm 34:6-8

photo credit: www.scienceimage.csiro.au/mediarelease/images/open_sea_sm.jpg,
wwwcache.wral.com

Wednesday, September 17, 2008

It's Like This....

Kristina Chew at Autism Vox shares several poems by author and autism mom, Barbara Crooker. One of her most recent poems in the book Line Dance, entitled Simile, reminds me of one of Reid's all time favorite board books, Quick as a Cricket. It is one of a scant hundred we are scheming to present to Little Guy Wood, Carla's baby boy arriving in December. The catch is, Reid still loves them so much he absconds with the new copies as fast as I can hide or wrap them. He is futiley trying to convince me to give his ripped, stained, and cherished original copies to the baby, who "can't read yet anyway." He's got a point. There are worse obsessions!

Anyway, Audrey Wood's classic was one we used to build an emotional vocabulary of adjectives when Reid was younger. He still fancies the metaphors and visual imagery that depict moods including, "shy as a snail," "large as a whale," and "tame as a poodle." Have you seen the PowerPoint image Temple Grandin uses to convey her childhood sensory experience with toilet paper? Scratchy as sandpaper. I couldn't find it online but here is a similar representation. Similes are quite effective. Barbara Crooker's son coined the phrase, "mad as a tea kettle" which is vividly descriptive despite his teacher's redlining it.






Simile
My son showed me his paper from remedial
English; he was supposed to fill in the blanks.
Cool as a __________.

Smooth as a __________. Neat as a _____.

He came up with: angry as a teakettle

and when I asked, “Why?” said,
“Because it was boiling mad.” Of course,
it was marked wrong, one more red mark
in his life’s long test.


When I called from Virginia to ask him

what he did last weekend,
he said, “We bought Italian salad dressing.”

Last fall we went to a Broadway
play; what he liked the most
were traffic lights and Don’t Walk signs.

Of, my little pork chop, my sweet potato,
my tender tot. You have made me pay attention
to the world’s smallest minutia. My pea-shaped heart,
red as a stop sign, fills with
the helium of tenderness, thinks it might burst.

from Line Dance (Word Press 2008) by Barbara Crooker



God's Word is full of similes. Spiritual concepts are the hardest ones for us to grasp whether we are autistic or neuro-typical or gifted. Scripture comes the closest to conveying the abstractions of God, His heaven, and His immense love for us since it is, in itself, God-breathed through the Holy Spirit exclusively for our limited, finite, and human understanding. The Lord has done His part by putting it into our language and our individual learning style with factual accounts, visuals, parables, timelines, and even poetry.



Let my teaching fall like rain and my words descend like dew, like showers on new grass, like abundant rain on tender plants. Deuteronomy 32:1-3

Man is like a breath; his days are like a fleeting shadow. Psalm 144:3-5

For a thousand years in your sight are like a day that has just gone by, or like a watch in the night. Psalm 90:3-5

A word aptly spoken is like apples of gold in settings of silver.
Proverbs 25:10-12


A quarrelsome wife is like a constant dripping on a rainy day
Proverbs 27:14-16

For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:11-13

photo credit:
5x6csa.com

Tuesday, September 16, 2008

Underdog!


I like the thoughtfulness of this article by a teacher noticing her own lifelong penchant for the underdog. I often wonder (and usually inquire) what draws people to the field of special education. Although it is my passion now, I never would have predicted it would become so central in our lives before learning that it affected us personally. One of the first questions I have always asked professionals who work with Reid is, "what led you to this kind of work?" Partly, I am vetting their motives. Their response also reveals to me how they perceive their work. Is it education or mere respite care? What expectations do they have of themselves and of Reid to progress? Also, I am just curious what makes them tick.

Often, our very favorite professionals have had a sibling with special needs or some personal relationship that motivated them to enter the field. Their desire, skill, training, competence and compassion were born out of inclusion and a personal connection.

Hiring (and keeping) tutors can be difficult. Reid has always been a "challenging case" with his potent combination of smarts and behavior. He tests everyone who has ever tried to play or work with him. This served to increase the turn over rate at our place during the home program heyday. He still has a way of demanding the best of everyone around him as well as revealing their weaknesses. For the willing, he provided a rigorous continuing ed course. He could dish out every avoidance tactic, maladaptive behavior, and sensory issue in the book in one quick 50 minute clinical hour. I am grateful to be looking back on those days.

I would lay awake at night wondering, "What makes some people better at this than others?" (And how will I find more of them?) We had an eclectic program wanting to incorporate ample amounts of Floortime with the obligatory ABA. Following a prescribed teacher/student script of discrete trial drills can be taught relatively easily to anyone. Engaging in child-centered play as Dr. Stanley Greenspan advocated was another matter. It had to be caught. I struggled with Serena Weider coaching me to undo much of what my parenting model had been. My husband, who is far less inhibited and more playful to begin with, was more natural at it.

Three standouts in our own personal autism intervention history were Danielle, Carla, and Michelle. (I hate leaving out Ben and Angela and Becky but, they came along later.) So, can you tell already that I liked people who were willing to become family and blur the boundaries of professionalism in our best interest?!@# I refer to 'the good old days" of early intervention when our team included that triad who met weekly in my living room until Jim rolled home for dinner. I never felt alone. We had each other and plenty of ideas to put into motion. They had energy and we had money! Clearly, people motivated by challenge were ideal. Reid was not a sit-in-the-chair and parrot back trials kinda kid. As one educational therapist said of him, "He is a mover and a shaker who needs someone who can move through life with him." I liked her.

Carla came into our lives through the dreaded school district. Despite that entree, she and I connected immediately with a sister-like chemistry. I will never forget her first session with Reid. It was basically love at first sight for him as a preschooler to have this young, fun bubbly woman woo him into turn-taking, playing "guys" and singing songs together. Since we both have curly hair, I used to joke that maybe it was the curly hair gene that was the magic touch we sought when interviewing tutors. Could it be the years of managing unruly curls that pre-qualified us for excellence in autism intervention? (I obviously think highly of my own contribution to the team, don't I?) Being curly girls made us flexible, open to the idiosyncratic, able to appreciate the beauty of going around and around in circles in Floortime play therapy. We found the beauty in it, not the frustration. I loved to hear Carla tell my son, "I love the way your mind works." But alas, there is more too it than the dominant curly gene. After all, Danielle had straight hair and she was a (little-s) savior to us. Now with the benefit of Strengthsfinder, I see that I was probably seeking out others with the Achiever theme that Jim and I share and brought to parenting. Carla's Communicator and Activator themes were well suited too. Did you know Woo is actually a Strengthsfinder theme? Of course, she has that one too. Whew who!! Empathy is another theme to seek out when hiring especially for non-verbal kiddos. Imagine how helpful it is to spend time with someone who knows how you feel before you do and can prompt you with a handy English phrase?

In addition to Reid's maneuvering, our attrition was due to the eligibility of the crew. In short order, they all seemed to run off to pursue doctorates, marriage, or babies. Such is life...it gave Reid invaluable practice in the less popular social greeting: goodbye.

Reid's current case manager, the nicest guy you could imagine from the midwest, had just finished the military when his wife asked him, "If you could do anything in the world what would it be?" He replied, "teach." Good for him. Good for us. I have less time with him as they are outside my house now, so I continue to ponder what seeds were planted in his life that grew into the tireless, hopeful, consistent teacher Reid enjoys this year.

Here is one more article about a teacher who switched from regular ed to special ed based on her attachment and "falling in love" with one student. It happens all the time, see Kiara Brinkman the teacher who wrote Up High In the Trees and You're Gonna Love this Kid by Paula Kluth. Maybe the common denominator in extraordinary teachers is their genuine appreciation of each unique soul God has created as individual and different from the next as each seashell, each star, and each snowflake.


"He determines the number of the stars and calls them each by name." Psalm 147:3-5


"And in the church God has appointed...teachers, then workers of miracles, also those having gifts of healing, those able to help others..." 1 Corinthians 12:27-29


Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?" And I said, "Here am I. Send me!" Isaiah 6:7-9


photo credit:www.movieweb.com

Monday, September 15, 2008

All Roads Lead to Writing

When every song on my ipod, every artist I select, every sermon outline fill-in-the-blank, every instruction I am given (even my kids' devotionals) compel me with another idea to post, it must be a sign. Get back to blogging!

The summer was long. My daughter switched to a new high school giving her 3 full months and an overdose of vacation and staycation. We had a trip to the east coast that afforded great family memories afterward but, in the moment was stress-filled requiring a double dose of attitude adjustment. Reid had the month of August off with no school routine to keep us plugged in. Need I say more? Whether or not you noticed, I have unknowingly kicked the habit of daily posting.

I'm back in the saddle though, as of now! I've been stashing notes in a book stand on my kitchen counter. It is jammed with experiences to process from the summer each on their own little slip of paper or in the margin of a church program. It is motivating to think I will not run out of material but rather have a storehouse of observations to unload. In her book, Writing to Change the World, which I absolutely love (I don't think there is a page I have NOT dogeared), Mary Pipher encourages writers to go ahead and say it, "I'm a writer." Often, we are the ones with the introverted temperament who procrastinate and need a push to take the little leap of faith to dive in and commit to that as a professional title. That is me.

The longer I avoid writing, the more slips of paper accumulate. What's even more annoying, more and more mundane events beckon me back to the keyboard. Listening to instrumental music walking the dog, I can't help myself from composing illustrations about life and autism. Metaphors are cutting me off in traffic on the freeway of my mind. At my piano lesson, my substitute teacher (not even Angela) explained how I might improve my phrasing on Ecossaise in C by Beethoven. Without realizing it, her words were a metaphor for my month with Reid at home 24/7. I give him instructions in pianissimo then repeat them in a crescendo with only slight variation again until it is forte. Then I back off in resignation before the D.C. al fine as if to replay the request. I didn't have to think too long to implement her suggestion that I envision a storyline while I play. It all comes back to autism. My life has become a spiritual journey through (not to) autism. You may think, autism, schmatism. (That's another great blog name that's been taken.) I say, it's all good!



What do all your roads lead to? A new house...an obvious mate...the decision to adopt...persistent nudges to a certain project....to say "no" to something...

Could this be one of the ways God speaks to us? Like the insistent prayer of the widow in Luke 18, maybe His Holy Spirit is modeling prayer for us prodding and poking, divinely texting and twittering us with reminders to complete the plans he has for us.


"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' " Luke 18:4-5


"We write this to make our joy complete." 1 John 1:3-5


"Since you are my rock and my fortress, for the sake of your name lead and guide me." Psalm 31:2-4

Wednesday, September 10, 2008

Way Back When

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