Monday, November 30, 2009

Parents Rule!

Kids drool? well, not exactly.

On an hour respite from a trying Thanksgiving weekend, Allie, Kat and I discovered these bracelets. We each picked a different inspirational mantra that suited us perfectly. They seemed custom made expressing our individual approach to all that life was dishing out in the moment. The serendipitous finding buoyed us through the rest of the day affirming our particular piece in the family puzzle.

Allie's says this:













Kathryn's said "Don't Settle for Less."












and mine:













Riding out a wave of medication, scary behavior, and holiday expectations had me feeling like the kindergarten Dutch boy with his finger in the dike determined to hold back the sea. Impossible and solely my responsibility. Now, Monday morning, I am grateful to run across this draft of a post which reminds me of parents who've gone before and Redefined the Impossible...a future for kids.

Check out Berkshire Hills Music Academy, an incredible post-secondary school in a collegiate setting for young adults with disabilities to pursue their musical passion. Living in dorms with support, they learn life skills and academics in a music-infused curriculum. I love the sound of that! And the fact that they take it to the streets and perform in the community. How did it come to be? Parents founded it. Out of necessity, no doubt.


Another example you may have seen last month in Wired, is of Thorkil Sonne, a parent, who formed an IT consulting firm in Denmark called Specialisterne that trains employers how to maximize the unique talents and productivity of Aspies.

My friend, Jody Mlynek created Logan's Friends to help churches around the country be more inclusive. Her business was born through her experience starting a program to serve her own son, Logan.

Do you know others?

In most cases, a parent has the greatest motivation to ensure his child's future. Many fabulous tutors and therapists have circulated through our home, but you know what? They keep leaving to get married, have babies, or get Ph.D's. We remain. I was feeling the weight this weekend of having the kid only a mother could love. It's heavy. And I do. Undoubtedly, parents have the strongest love and most relentless pursuit for their kids' potential.

Indeed, our Father in Heaven has an undying hope for our future. Since He created us, knows us best, and delights in each of us, He is absolutely the one most inspired to prosper us, see that our joy is complete, and give us hope. His is the best plan of redemption for our permanent future: not a special school but a mansion with many rooms awaits. He went to great pains to get us there. He sacrificed a piece of Himself to make it possible. He designed Plan B when Plan A didn't work. He never leaves us or forsakes us.

What a role model. Parents rule. God reigns!


The hired hand is not the shepherd who owns the sheep. So when he sees the wolf coming, he abandons the sheep and runs away. Then the wolf attacks the flock and scatters it.
John 10:11-13


How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are!
1 John 3:1-3


For nothing is impossible
with God. Luke 1:36-38

Saturday, November 28, 2009

Yubo Disqualified

Yubo called me this morning! We have a most peculiar admiration society.

His daughter had a fever; he wasn't sure who to call. Would I get word to the proper symphony and chamber authorities? Of course.

Hey, that disqualifies him from the competition. Right? I win!

(I think I once won a student body election this way.) Uncontested. Interference? Whatever it takes.

I must say it was a relaxing drive down University Avenue today. Downright boring.

Friday, November 27, 2009

Introducing....Do Tell!

Sharing our stories can be a healing balm.

Jesus taught in stories. He also listened to people's stories even though he knew how they ended.

C.S. Lewis wrote, "We read to know we're not alone," which reminds me of my impetus to start this blog. I need to tell my story and I need to hear yours.

So, every Friday I am going to post a question that I reckon each of my readers can answer with at least one story. Be practical, be personal, be painful, be my guest by clicking "comments" and leaving a reply. I hope you'll begin to think, TGIF, I can tell someone!

I spoke on a panel last week for Ability Awareness Week at a local elementary school. It was awe inspiring to hear the other panelists and encourage the eager little faces to be tolerant friends to those with differences.

Another panelist was a school principal with ADHD who told her story of talking in class as a youngster, being docked points and eventually denied cupcakes on her own birthday. A mean, uninformed teacher had inadvertently fueled her life's ambition as well as given her ammunition to inspire students and teachers alike some 30 years later with a parable they'll never forget.

As the kids cleared out, those of us who didn't have a class to get to burst spontaneously into storytelling from our own childhoods and those of our kids. Almost refusing to clear the multi-purpose room, we were inspired, uplifted, encouraged and bonded by the resonance of our experiences, realities, failures, and solutions. We need this! And as I like to tease, "I don't get out much!" So, sit back, stay home, anytime of the day or night, and tell me this:

What autistic tendency are you most thankful for?

Thursday, November 26, 2009

Thankful for Friends who Really Pray

This arrived from a friend and it makes me so thankful to be covered. I am grateful for this friend who puts her email where her mouth is and sends words to me that bless, that are a salve, and that release God's power.

I pray it aloud for my readers who face similar challenges. Like me, you may be weary of the journey. Like our kids, you may struggle to express your "wants and needs."


Lord, I at this moment I ask that you bring shalom - comprehensive
wellbeing, love, peace, calm, integrity - to flood my reader and her world.

I ask that you bring shalom to every cell of their child's body, to each membrane
where cell touches cell and to everywhere that chemicals and
neuroelectrical charges flow.

I ask that you bring shalom to every member of their extended families,
to each place where life touches life, and to everywhere that voice and
feelings flow.

I ask that you bring shalom to every room of their home, to each wall
and hall and doorway where space touches space and to everywhere that
energy, events, and family flow.

I ask that you bring shalom to every day in the coming week, to everywhere
that hour touches hour, day touches day and everywhere that time and
planning and intention flow.

I know that you hear me. I know that you love them. I
claim even now, at this moment, you are sending your shalom, your deep
comprehensive peace within, before, behind, between - cells, people,
rooms, hours, events, and days.

Thank you for being able. Thank you for being willing. Thank you for
being. Amen.


Wednesday, November 25, 2009

Lost Again

My favorite-movie-of-all-time is Lost in America. Albert Brooks' cracks me up as he whines, "I can't believe it, I've lost a whole woman. How can that be?" After a fight, his wife has hitched a ride with a redneck stranger to get away from the Hoover Dam and him. ARRGHH!!!! come his non-verbal groans of exasperation and helplessness. What to do now?!??! I know the feeling.

I could, but won't, make a recurrent series of Lost and Found Reid stories, for it happens woefully often. It is not something I'm proud of but, it is emotionally trying enough that retelling seems to be a coping mechanism. Will you oblige me?

Every time it happens, that Albert Brooks line runs through my mind. "I've lost a whole child!" It helps to have someone with me, someone who knows Reid, someone who knows I'm actually ultra-responsible. Just like the sister in Ian's Walk by Laurie Lears, Allie knows how he thinks. She accurately claims to have a sixth sense about where he will be.

I generally don't involve security right away because 9 times out of 10, we're the ones who find him anyway. He returns to where we last saw him like a little doggie wagging his tail behind. Pulling the alarm, seems to attract negative attention and be unnecessary. Strangers, no matter how well intentioned, have actually confused him in the past and set him off his logical course.

However, this time I was alone after the successful Kingsmen gig at the rambling 250,000 square foot Town and Country Hotel and Convention Center facility. Jim had left, the audience had cleared, we were putting amps away. Reid was within eye shot browsing sodas at the lunch buffet...and in the blink of an eye...argghh!...a whole child...@#$%^&!...lost.

This place is a huge maze of ranch-style bungalow cottages, two high-rise towers, courtyards, multiple pools, and at least 964 televisions. After Albert Brooks flashed through my mind, I had a vision of checking all 964 rooms with a pass key in a massive shell game to discover behind which door Reid would be happily watching PBSKids.

The usual protocol is this:

1. Pray
2. Fan out
3. Stay in the spot last seen
4. Wait
5. Enlist help (after a reasonable amount of time--15 minutes?)

In this case, I prayed the standard, "Lord, you know exactly where he is. Lead me to him I pray. And keep him safe from harm in the meantime." Called Jim to do the same. Then jumped ahead to #5 on the list. I didn't want to mess around since we were due in 30 minutes at a drama rehearsal that was 30 minutes away.

Power walking through this idyllic complex without passing go, I grabbed the first uniformed concierge I saw at Registration."I have a lost child, will you call security?" please.

No frantic first timer here, I knew the line of questioning better than she did.

"Yes, right away," as she dialed. I interjected the next piece of information, "He's 15, has autism, and is wearing a bright turquoise sh....

"Wait," something clicks in her mind, "I think I just saw him."

Praise God. Smooth way to answer prayer! Look how You led me right to this particular woman. Who needs security? You are good!

"Just a minute," as she hung up the phone. "I thought that was weird," she was thinking outloud. "He was just on those computers and...let me go check. I wondered why the door was open...."

Sure enough, after tracking her through a couple of keypadlocked doors, we spied him. Shoulders drop...exhale...found.

That had to be the fastest, timeliest, serendipity-est round of lost and found yet! Off we went to the parking structure...arm in arm, Cotillion style...only 5 minutes late for drama. In my mom's famous line to endorse the power of prayer, "You don't think that just happened, do you?"

Everytime, I am reminded of God's control over the details in our lives. He must certainly have extra guardian angels assigned to Reid. And His grace exceeds Reid's curiosity.

Do you have a favorite version of Amazing Grace? Like Albert Brooks and Easy Rider, "I've based my whole life on that song."



If I had a mind to brag a little, I could probably do it without looking ridiculous, and I'd still be speaking plain truth all the way. But I'll spare you.

Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty!

At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it's all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness.

Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become. 2 Corinthians 12:6-8 The Message

Tuesday, November 24, 2009

Top 10 Tuesday

Top 10 Most Exciting Places I've Lost
(and thankfully found) Reid

10. Target

9. Solana Beach Presbyterian Church

8. San Dieguito County Park (125 acres)

7. Balboa Park, San Diego (1,400 acres)

6. Park City Mountain Resort

5. Town & Country Hotel and Convention Center (250,000 square feet)

4. The Tate, London

3. Walt Disney World

2. Mount Rushmore National Memorial

1. Fourth of July Water Fight, Nantucket


What can I say? He's fast, he's quiet, he's curious, and he has an amazing sense of direction. So, when I say "lost," he is not. He knows exactly where he is and has a mission. He's just failed to communicate it to anyone. I feel like the Man with the Yellow Hat playing a 3-dimensional game of Where's Waldo?

Sunday, November 22, 2009

Vision Accomplished

Life holds many ironies. Here's the latest I've noticed in our life.

When Reid reached about 3rd grade, Sunday school became a virtually impossibility. Worship time was engaging but breaking into small groups for discussion was Reid's cue to wander the campus. The entirely auditory exercise without visual support was beyond his ability to comprehend.

That year, I was serving as an Age-Level Coordinator, so that I could "float" and supervise, not teach, thereby be available to troubleshoot the classroom where Reid was. Sounds great in theory but one awkward Sunday morning it all came to a head. I never officially resigned, but they knew I was done. With one desperate glance and a furtive sigh, I looked up harriedly at the interim director of Children's Ministry and said, "I can't do this!" We haven't spoken since, beyond a polite "hello," nor have I been solicited to volunteer again.

The most expedient way for us to "do church" from that point on, was to have Reid join us in the sanctuary. Although we did it under duress and stubborn refusal to skip church, let me itemize the reasons why this might be preferable in the grander scheme. I realize them only in hindsight.

1. Reid practices the adult life skill of attending in a large group
2. The service is predictable and structured, therefore "safe"
3. Leaders from the pulpit are more consistent than the Sunday school volunteers
4. He experiences worship and more music--his best comprehension channel
5. The pastors recognize Reid
6. Reid knows his pastors
7. Our church family participates in Reid's progress
8. Friends are reminded of "the least of these" Jesus came to save
9. Friends around us are blessed by Reid's uninhibited singing
10. Reid is around people with typical language and behavior to model

Any others come to mind?

Here's the irony: Our church has recently embraced a shift in perspective on Next Generation ministry. Junior and Senior High students are being included in worship once a month and there is an expressed goal of flipping the ratio commonly associated with Children's Ministry and childcare settings. 1 adult to 5 children seems a safe and nurturing ratio. The church is aiming to reverse that so that 5 adults know every 1 student by name, care about them, even pray for them as they leave for college.


For once, (or as usual?) Reid is ahead of the game. Practically everyone knows his name! Even the Panera clerk where we religiously head afterwards. She has his "usual" bear claw and lemonade plated up before we reach the front of the line.

"For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD. "For as the heavens are higher than the earth, So are My ways higher than your ways. And My thoughts than your thoughts. Isaiah 55:7-9


Jacob said, "Please tell me your name
." But he replied, "Why do you ask my name?" Then he blessed him there. Genesis 32:28-30

Saturday, November 21, 2009

Yubo's Secret is Out

Allie is a good girl, really she is. Doesn't miss a trick. And she tells me everything!

Privileged to ride with Yubo cross-town last Saturday, she reported, "Mom, as soon as we got in the car, he opened a map on his lap and said, 'this week we go new way!"

Of course, she nearly died laughing inside and couldn't wait to text me. Aha...so that is his trick! Not a GPS, an old-fashioned map. I'm secretly pleased to know I have this guy on the run, though. He is competing with me. I knew it! Good thing I have Allie as a spy.


Friday, November 20, 2009

What's a Wordle?



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


Thursday, November 19, 2009

Yubo Would Go

Once a quarter, our weekends turn into marathons of active duty requiring 2 fully caffeinated adults on a mission to divide and conquer, in order to accomplish the intricate array of rehearsals, call times, college fairs, recitals, practices, and gigs (not their own) laid out in a 30-mile radius.

To pull it off last Saturday, I needed Yubo's help. Jim and I both wanted to see The Kingsmen's noontime concert at the American Music Therapy Conference. Kat had to work. Allie doesn't drive for another 6 months.

I called Yubo to ask my favor. Could he transport Allie from symphony to chamber? Once he realized who I was, "yes, no problem."

I continued with my female incantation of the why's and wherefore's of our scheduling conflict. We'd get her downtown and home at the end, but that middle run cross-town coincided with Reid's gig. It would be oh-so-helpful if he would do it. Of course, he'd already said yes, but I felt the need to embellish.

"Don't worry. I get her there," came his crisp reply.

Oh, I know you will Yubo, I thought to myself and on time. What a guy!

Wednesday, November 18, 2009

Better Living thru Chemistry...ha!

Ten months ago I almost wrote a post (at the suggestion of a puffed up psychiatrist in a fallen economy) portraying Reid as the poster child for the benefits of Abilify. Overnight, it seemed last December, the amp was turned down on his rage. His ability could shine without the glare of interruption or explosion. Suddenly, there was a filter on his impulses and reactions. I totally understood how they had named this product.

The dramatic change was epitomized by his entrance on the morning bus. He walked slowly down our brick walk, stepped lightly into the bus, said "good morning" in a regular voice, and calmly took his assigned seat. I wish I had a picture of what could only have been captured previously on video. Lightning fast, he had been in the habit of bolting out the door, storming the still moving vehicle, darting to his seat nearly decapitating anything in the path of the swinging backpack on his shoulder, then plopping down with a dramatic thud.

This new, slower, calmer demeanor came as a great relief to our household. I realized one morning how significantly the "right med" could impact him socially as well as improve others' perception of him. No longer did peers have to duck and cover when they saw him coming. This would certainly foster conversation and friendship. And it did for 10 months. I was celebrating with friends, family, and pharmacists all over town.

BUT, we just reached the end of our Abilify rope. Agitation, obsession, and perseveration at an all time high, I pulled the plug after a sleepless, prayerful night last Saturday deciding cold turkey was the way to go. There was no denying the tense stuck-ness and resulting mania was chemically induced, debilitating, and as bad if not worse than the pre-Abilify symptoms we were supposed to be addressing.

Drugs are serious folks, not to be reckoned with lightly. Allie had an annoying, persistent bug last week. In desperation facing some mandatory commitments she couldn't shirk, we visited the on-call Saturday doc at the medical center we don't frequent. He non-chalantly prescribed doxycycline for what he presumed was walking pneumonia. Less than 48 hours later she could not breath or eat and was clinging to me in fear at bedtime. "I feel worse, Mom, don't leave," she cried. Calling Jim in to hold her hand, I quickly google searched an explanation. She was suffering from notorious allergic reactions and/or side effects to the drug itself. Not prone to rush to the hospital, we rode it out by pumping tons of water and running instead to our chiropractor nutritionist the next morning.

She is on the mend after he adjusted her hiatal hernia and prescribed two nutritional supplements to restore the healthy flora in her intestinal track. Allie learned an important lesson in comparing health care modalities and avoiding use of controlled substances.

I stand assured that my previous caution remains the way to go. During the Abilify-honeymoon, I nearly apologized to the docs (and Reid) for waiting so long to medicate. We were slow to try anything, preferring to exhaust the natural alternatives of the DAN! protocol, the Pfeiffer Clinic, osteopathy, solid nutrition supplements, fish oil, and any other non-invasive option that came our way.

We eventually did trials of at least five indicated drugs only to experience adverse effects. Hives, vomiting, and face-down distress on manhole covers at recess convinced us to halt and fast. Every med undeniably complicated matters and added more variables to the equation. Until Abilify. It seemed to be the magic bullet. But no. Woe, there is no such thing.

"Life is a long process," as Jim says. We forage on in search of workable solutions for the chapter at hand. As my dear friend, Carolyn, pointed out to me years ago over another matter, God often tells us just one step at a time. When his directions seem counter-intuitive it doesn't mean we heard them wrong. He just tends to keep us attentive, flexible, nimble and never idle.

Case in point, when God told Abraham to sacrifice Isaac, He meant it. As bizarre and horrifying as it was, Abraham complied. Then at the top of the hill, at the eleventh hour, God provided a ram in the thicket, telling Abraham to unbind poor Isaac. He meant that too. Abraham heard and obeyed both times. What if he had only listened the first time? What if he'd stubbornly refused the second time sticking to his guns saying, "No, I won't untie Isaac, I was told to sacrifice him and I will no matter what."

Many things don't make sense to me. Maybe that is why I'm quoting platitudes. My mom is known to say, "we walk in the light that we have." At any given time, we pray, listen, and follow. Abilify was then. This is now. I don't look back with regret but with gratitude for lessons learned and the process of elimination.

Switching doctors once again, I am getting the lay of the chemical landscape. Hope remains that this new doctor's old school approach (with drugs that have been around longer) will yield benefits that can be sustained. I am forever on my knees listening and always on the lookout for a substitute in the bushes.

You know I'll keep you posted.


There is a time for everything, and a season for every activity under heaven Ecclesiastes 3:1-3


So Abraham called that place The LORD will provide. And to this day it is said, "On the mountain of the LORD it will be provided." Genesis 22:13-15

Because of your great compassion you did not abandon them in the desert. By day the pillar of cloud did not cease to guide them on their path, nor the pillar of fire by night to shine on the way they were to take. You gave your good Spirit to instruct them Nehemiah 9:19-21

Tuesday, November 17, 2009

Top 10 Tuesday

Top 10 Ways to Engage with a Teenager
(ASD or not)


10. Lay in the hammock

9. Smell something cooking on the stove

8. Crawl inside the netted trampoline at dusk

7. Have a silly "yes-no" battle

6. Crank up a song on the car radio

5. Look through some old photo albums

4. Share a pair of ipod earbuds

3. Chill in the car for a coupla' minutes after parking in the driveway

2. Take dramatic deep breaths

1. Share a bag of Fritos


So often my attempts to engage Reid are really demands I make of him. No wonder he resists. I was sufficiently trained by Serena Weider in the Floortime modality years ago but I need reminders that goofing off is productive. Is it time to update the days of Playmobil guys and Winnie the Pooh to something more relevant to teens? What percentage of our dialogue with teens--on or off the spectrum--is inquisition vs. engagement, threatening vs. listening, corrective vs. receptive?

An adult psychologist in San Diego, Dr. Alan Lincoln, has an adult brother on the spectrum. He shared a story once that stuck with me. He was particularly busy one weekend when his brother called for his weekly visit. The NT brother felt guilty for being distracted and not as emotionally available as usual, pulled in a tug-of-war of demands on his time.

The ASD brother grabbed something from his brother's fridge, sat on his brother's patio briefly, then headed out the door saying, "thanks I feel much better now." His brother's relational needs were different from his own. It doesn't take as much as we think to make someone feel welcome, accepted, and connected.

Truth be told, Allie does most of these better than I do.


If anyone says, "I love God," yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. 1 John 4:19-21


Abide in Me, and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in Me.
John 15:3-5


The LORD will fight for you; you need only to be still.
Exodus 14:13-15

Monday, November 16, 2009

Somebody's Watching...Who's Listening?

When I was a new mom I often imagined being watched. The adoption process requires jumping through a lot of hoops, proving you're worthy, and otherwise impressing everyone from lawyers, to pregnant teens, to county employees with your perfect parent potential. Not necessarily a foolproof system; not the way God does it; just the way it is. Perhaps the fact that we were forcibly put under this microscope made me more self-conscious than most new moms.

My imagination was not so far fetched to conjure up a birthmother stalking us from behind the bushes at a local park eyeing my way with her offspring or peeping in our condo windows confirming her choice as she saw my affectionately winning ways with twins. (I've never told anyone this; November must be true confession month.) Being scrutinized and having to earn my stripes, probably made me a better mom.

My niece just moved in with us to embrace the California lifestyle. In short order, she has improved our quality of life substantially. I will be bummed when she makes enough friends to get her own apartment. She must be exhausted playing as many roles as she does to each member of our family. Being 25 years old puts her smack in the middle of the proverbial generation gap. She is a motivational novelty like none other for Reid. Her cheerful, empathetic interest in his day livens up our dinner conversation more than candlelight. She has become the namesake for his new favorite trampoline maneuver: dance dance revolution Kat-style!

Kat and Allie are like sisters neither one of them has had. She drives a convertible Beetle (way cooler than mom) and shares her hip wardrobe as readily as a personal shopper at Nordstrom's. Her memory of high school and college are still vivid enough to shed light. Her life choices are happening in real time for Allie to witness.

Actually, she is old enough, wise enough and foodie enough to be a lot like the sister I never had too! Having Kathryn here means that I am no longer alone with my thoughts. We were constant companions during the first weeks when she was unemployed and without wheels. Wanting to be sociable, apparently I began to say things out loud to her that had previously been left unsaid (or at least unheard). She would compliment, ""Your internal monologue is hilarious. You're cracking me up, I can't stand it, stop...." Who knew? I never thought of myself as that funny. She is at once a mirror, a sounding board, and an audience. Oh my goodness, she just told me she loves to iron! Jackpot, I tell you. Having a confidante and adoring fan is (in my humble opinion), making me a better writer.

Arguably, we all have an internal monologue of some sort; a conversation that goes on inside our head that others (usually) do not hear. In Reid's extroverted case, it is there for all to hear. Allow me to introduce another character in his repertoire of all-time favorites. Drum roll please......Allie-in-the-tummy. Although she has not been immortalized on the silver screen or merchandised to the hilt, she is precious to us and critical to his well being.

When she first arrived, it seemed Reid was talking to himself. Jim would correct, "Allie is upstairs, Reid. Go up there so she can hear you." He rebuffed, "No, not the real Allie, Allie-in-the-tummy." Or more directly, "Quiet! I'm talking to Allie," as if we had no manners at all.

At second glance, this talking to an imaginary person was slightly disturbing, especially given that he holds both sides of the conversation.

R: "No, Allie I don't want to do homework....it's hard. I can't" (with real tears)
A-i-t-T: "Well, you have to Reid. Mom said. I know you can do it. You're a smart boy. I'll help you...come on..."
R: "Ok Allie. You're right."

Another time during the flow of homework, we overheard this adoring dialogue:

A-i-t-T:"Reid, you look so cute in that picture."
R: "I know Allie but let's get back to work."

Allie-in-the-tummy has a slightly higher intonation and is always patient, wise, loving, and encouraging. She accompanies him to school, on the bus and to bed. Like Jiminy Cricket, she helps discern right from wrong. (I just learned that Jiminy Cricket was originally a euphemistic expletive to replace taking Jesus' (J.C.) name in vain. Ironic.


At third glance, it may seem like a twin thing, a residual of twin talk that developed when they separated for a large chunk of the day at different schools. At fourth glance (and believe me I 've pondered it more than 4 times), it is healthy self-talk, way more pertinent than any counsel or cognitive behavior theory the school psychologist may give him.

Having a readily available guide helps Reid make better choices. Furthermore, hearing his thought process helps me to understand his internal struggles and the function of some of his behavior.

So it is that I have ultimately landed on the spiritual application. Allie-in-the-tummy is akin to the voice of the Holy Spirit any of us might hear whispering in our right ear--advising, convicting, spurring us on to do good. In keeping with the character of God the Father, the Spirit's nature is faithful, upright, pure, of good repute, fair, forgiving, and tender. The opposite of the enemy's voice, His is also distinct from our own sinful human nature. We would do well to follow Reid's example, quiet ourselves, "take a minute" (as defined in his Behavior Intervention Plan) and listen for that still small voice.

Having the Holy Spirit to instruct us, makes us more like Christ.


The Spirit searches all things, even the deep things of God. For who among men knows the thoughts of a man except the man's spirit within him? In the same way, no one knows the thoughts of God except the Spirit of God.
1 Corinthians 2:9-12


Your ear
s will hear a word behind you, "This is the way, walk in it," whenever you turn to the right or to the left. Isaiah 30:20-22


"My sheep hear
My voice, and I know them, and they follow Me; John 10:26-28


Thursday, November 12, 2009

Tight Spots

I chuckled empathetically to see how precious Rhema looks, at 4, climbing into (or out of) this washing machine. Flooding my mind's eye are tight spots Reid has sought and found over his lifespan. From the recyling bin on the windowsill of our cellar stairs in Chicago to the built-in china hutch by the back door, he is like a little caterpillar finding choice spots to form a crysalis and hang for a couple months.

I remember losing him temporarily at a Home Depot once. Allie and I had a search-and-recover plan devised by then. I was relieved to hear the calm in her voice as she merely pointed, "Mom..." He was happily jabbering in a stack of 18" resin planters in the Garden Center.

Last night Allie and Kat were laughing uncontrollably on their pillows. This morning I asked, "what was sooo funny?" They were howling over an after-school moment that I hadn't realized was so hysterical. Pour quoi pas? Once they explained, I see the joke was on me this time.

Situational comedy requires a backstory. You got time?

Reid's been pining for an aluminum garbage can for awhile. The plastic yard waste ones we have are just not adequate to reenact the Sesame Street episode in which Oscar the Grouch releases a balloon from his can. For one, they don't have lids. For two, well they're not metal.

This fixation is relatively new but has led to some awkward moments in public and around the house. Define awkward, you say.

Well, it's just a pain to have to search for the garbage can when you have something to pitch. As imaginary props, ours are migrating to isolated corners of the house and yard. I don't feel it is the best use of my time to pick up rolls of discarded plastic garbage can liners in the garage. I prefer not to deal with the quizzical stares in waiting rooms, lobbies and department stores when Reid approaches every trash receptacle in sight. He removes the contents, turns his back to it, squats slightly, then tries it on for size. Awkward? Embarrassing? Will you give me idiosyncratic?

I can deal with it. It's not exactly a safety matter yet, neither is it a life skill we want to encourage. When Jim witnesses it (usually over the weekend) he undoubtedly asks, "why is he doing that?" To which I whine, "I don't knooow." Could be that Reid's new job at school is to empty waste cans. Could be the Oscar obsession. Could be sensory. Bottom line, it's just weird and blows our cover when we're "pretending to be normal" in the words of Liane Holliday Willey.

Much like the decision to get u-verse (and pre-empt a trespassing felony) I called Jim yesterday and said, "Are you anywhere near Dixieline Lumber?" He had the day off and I'd already gone once for lightbulbs.

"I could be," he mused.

I got right to the point, "Will you pick up that aluminum can? I know they have 'em. Reid spied it the other day." I had talked him into putting it on the perpetual wishlist. "Christmas is coming....," I'd intoned.

"Are you sure it won't turn into an obsession?" Jim wondered warily.

"I'm not sure of anything but we're outside Henry's Marketplace and he's getting into theirs, so just get one," I lovingly replied.

Since Jim has been a saint lately, he obliged us both. Reid ran into the house, picked up the can in a giant bear hug maneuver and brought it into the kitchen. The balloon he'd talked about putting into it and releasing had long since bit the dust. So, what would you do? Be the balloon, as they say in sports psychology. Reid hopped right in, Oscar-the-Grouch style. Only thing is, he's 15 not 4.

I was distracted emptying grocery bags, reconnoitering with Jim and Kat, settling Allie and a friend into their after-school routine and famished from skipping lunch. Picture commotion. When a frantic plea was broadcast, "Mom! get me out of here!"

Reid was folded in half, butt first in the can. Head and feet protruding from the top.

Bear in mind, this is just par for the course around here. It was my sudden response that threw them into hysterics. With the confidence that comes from years of practice, I darted over, grabbed him under the shoulders and pulled with all my might. Any mother would do the same, right? Christopher Robin to the rescue!

Apparently, this works better with toddlers. My adrenaline was not enough even with a foot shoved into the bottom of the can for leverage. He didn't budge. Thinking quickly (and fearing escalation and panic) I tipped it over as if pouring out a 50-pound bag of Alpo. Reid's feet were on the ground then, so he more or less walked out of it as we slipped the can off him like a candle snuffer.

Wish I had a picture for you. Maybe this afternoon. Unless of course, that natural consequence has extinguished the behavior.



Find out about all the hiding places he uses and come back to me with definite information. Then I will go with you 1 Samuel 23:22-24


Then he asked them, "If one of you has a son or an ox that falls into a well on the Sabbath day, will you not immediately pull him out?"
Luke 14:4-6


Let us hold unswervingly to the hope we profess, for he who promised is faithful. Hebrews 10:22-24

Tuesday, November 10, 2009

Top 10 Tuesday

Top 10 Reasons to Look for a New Doctor
(particularly in psychiatry)


10. he wears elf slippers and talks baby talk to adolescents

9. asks if your boy/girl twins are identical

8. his standard poodle "therapy dog" humps your leg

7. threatens to charge you a maintenance fee if he can't reprogram the timer on his fish tank (that your child unplugged)

6. suggests botox for your teenager's anxiety

5. wears a 3-piece suede suit in Southern California

4. tells you he learned everything he knows about drugs by using them

3. keeps you waiting 30 minutes then apologizes that he "had a suicide"

2. excuses himself for extended periods of time to a broom closet marked: "Do not Enter"

1. suggests you blog about how great he is






Let me just say that I never tell a lie (who needs to write fiction when real life is so utterly unbelievable).


A word to the wise in the world of autism intervention and treatment: There are always other fish in the sea.

Wednesday, November 4, 2009

Two True Love Stories

What could be better than a true story? Two true stories, intertwined with a third.

When the movie Julie & Julia came out I puzzled over how to justify a blog about it--off topic again! Lo and behold, it's emerged.

The film had me so jazzed! I had already devoured the original source material--My Life in France and Julia and Julia, the book. Blogging author, Julie Powell, is my hero. I love food, France, writing, the ambition of both these women, and butter.


I love that by pursuing their bliss, they both arrived at national recognition. I love their bawdy gusto and sense of humor. I love that their husbands were supportive and pushed them to greatness. I love the larger-than-life humanity they both exemplify--living in Queens or mis-flipping omelettes. Most of all, like them, I love to eat!!

I love that Julia is a near amazon with feet bigger than my size 11's. I admire her obsessive attention to detail; identify with her wanderlust, self-deprecating humor, and moxie.

As a fanatic, I watched Julia's oral history on Youtube recalling her years in Paris. With exemplary pluck, she sums it all up: "I find that if people aren't interested in food, I'm not very much interested in them...they seem to lack something in the way of personality...that side...that gustatory pleasure syndrome is lacking."

What is it that separates friends from kindred spirits? It must be a shared passion. Autism is a passion and I have others: food, faith, art, writing, books. When I meet a friend who shares more than one of those it is kismet. Having a friend who shares all of them is nirvana for we can eat, talk and pray with fervor. Pursuing a special interest is important to neurotypicals and aspies alike. Thus, the musical mentorships we will offer through Banding Together.

Like a mother adjusting her own oxygen mask first in the event of an in-flight emergency, I dragged my kids with me to the opening day matinee back on August 7. Allie reminds me she was had a slight fever. Five minutes into it, Reid started squirming, "is it almost over?" to which I parroted, "here comes a good part..." Fortunately (since I was not leaving), the onion chopping scene hooked him in and he is now an avid fan also. We've rented the original French Chef episodes on WGBH from Netflix. His gustatory sense is re-invigorated as is the life skills training going on in our kitchen. I already know what he's getting me for Christmas:)


Can I just say, I love this kid! I love his impersonations, his perfect pitch, the accuracy of his dropping the lower lip. I love that he loves food. I love his lack of inhibition. I love him more than Julia Child and Julie Powell put together! He is my special interest.


Then God said, "I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food
. Genesis 1:28-30


And a voice came from heaven: "You are my Son
, whom I love; with you I am well pleased." Mark 1:10-12


We have examined this, and it is true. So hear it and apply it to yourself. Job 5:26-27

Tuesday, November 3, 2009

Introducing.....Top 10 Tuesday!

Reid has a precious few friends. One of them is the youth pastor at our church. He'd like to have a playdate with Billy Jack, or a sleepover. I am hard pressed almost every Sunday to explain, "we can't really do that." "But, why not?" he implores." "Billy Jack is a good man." Social mores, fooey?!!?! You try to explain the invisible hidden fabric of our society.

Perhaps one reason Reid is so enamored with this pastor in particular, is a command performance he gives every May. Billy Jack runs up the center aisle of our church as if into the end zone to deliver the "Top 10 Reasons to Volunteer at Kids Games."

KidsGames, is a much modernized version of Vacation Bible School, requiring record numbers of adults to staff. In order to pull it off, Billy Jack must start early, make a big splash, and get everyone's attention. Reid absolutely LOVES the fanfare! (The actual week of KidsGames has long been too much commotion for his central nervous system, but he eagerly awaits the 2 minute simulation of its rollicking antics.)

It can be the middle of December and he will ask an unsuspecting Billy Jack on the patio, "when will you do the announcement?" He doesn't want to miss that Sunday...nor does he want to be caught off guard.

Maybe this is why his arrival routine (after high fiving Billy Jack) is to rush up the stairs to the ushers' pew, grab a program and immediately check who's on the docket. Is he checking who's preaching? What songs we'll sing? Or whether it is time for the Top Ten List? All of the above, I'm sure.

In that spirit of anticipation, I am instituting "Top 10 Tuesday" as a place to vent some items that have been accumulating in my mind. Jim reminds me that means 52 lists a year. I may have to ask for a little help along the way.

Tune in next Tuesday for "Top 10 Reasons to Look for a New Doctor"

OR

Leave me a comment suggesting a "Top 10 List" you'd like to see.

Monday, November 2, 2009

Eyes on the Shepherd

I am not very athletic. I am however, competitive.

One Sunday last spring Allie and I made our way to her Certificate of Merit music test on San Diego State's campus. Not sure of our actual destination, we followed printed directions through a maze of parking complexes. The sight of other parent/child groupings with black music cases assured us we were on the right track.

We parked feeling like tourists in a small town who'd found the locals' only breakfast haunt. It may as well have been Chinatown as we joined the throng, who appeared to know where they were going. It was then that my quiet, prophetic little Allie, uttered another of her truths and birthed the now familial phrase, "Mom, we're "keepin' up with the Asians!"

We guffawed as we realized the truth of it and the multiple meanings. She attends an academically rigorous high school which is ethnically diverse. Their class trip is to China which heightens our awareness and discussions of shifts in world power.

The reality resonates as flute is her primary extracurricular pursuit. Every Saturday in order to participate in both Youth Symphony and a chamber quartet, we must hightail it across town in 15 minutes flat. We aren't the only ones. A classmate of Allie's and her sweet dad, Yubo, do the same.

He is genuinely kind, having offered to carpool, get lunch or anything to be helpful. I don't think he is competitive but as mentioned, I am. I also crave efficiency. (I have a crush on the motion engineer, father of 12, Frank Gilbreth, from Cheaper by the Dozen, the book). And I'm motivated by challenge. Tell me I can't do something and I surely will.

So a tight transition like this thrills me all the more because it coincides with meal time and requires navigational prowess. There lies a freeway between the symphony rehearsal space and the quartet location. First time I drove it, without googlemaps or a GPS, I got all turned around trying to find a surface street that crossed over the 805. We were several minutes late owing to my lack of preparation.

The next week, after discussion with Yubo, I played it safe and took a straight shot to University Avenue then a right on 36th which dead ends into this woman's rental studio. We were on time. What befuddled me is how Yubo is always there before me parked on the shady side of the street, practically with his feet up on the dash, smokin' a stogie, while I am breaking out in a full sweat secretly racing to keep up with him.

This past Saturday, with a tuna sandwich and Snapple to go, I got the Eurovan and pulled into the loading zone a leisurely 15 minutes ahead of dismissal time, and waited. I was relaxed, surveyed a used book sale on the lawn, and got back behind the wheel way before Allie emerged. On her heels, I recognized Yubo and his daughter. We waved a friendly hello. And within seconds, it struck me. He was on foot.

We could beat him today! He wasn't even in a vehicle. He'd neglected the advice he'd given me about pulling into the loading area in advance then circling out of the unloading fray. He was trekking across the great lawn, through full lots at the Museum of Natural History and beyond to some distant parking spot.

"Allie, get in quick! Keeping up with the Asians! Let's go, look alive, hustle, girlfriend."

"Ok. I'm in. Go ahead, GO, mom, go."

"Yubo, IT is on!"

We smoothly but swiftly made the 360 and were out on the open road headed into thru traffic. Allie had them in sight, still walking. Maybe he forgot where he'd parked? (doubtful) My adrenaline was pumping; we had to be a full 5 minutes ahead of him.

This was the day! I smugly cruised through the green lights, rights on red, mindful of not gunning it or otherwise setting a bad example for my near-driving-age daughter. Simultaneously, I was aware of modeling for her that assertiveness and ambition are every bit as much her claim as anyone's and that being first was within reach! We can do this thing. You can do anything you set your mind to...(check that theology before you repeat it)

I confidently turned the last corner preparing to park in front of Dr. K's studio and greet the rest of the quartet when they arrived. What to my wondering eyes did appear...YUBO!

Parked. In the shady spot. Cool, calm, collected. Talk about smug?!* How did he do that?!?

Impossible! The man has a short cut he's not sharing, or batwings on the Highlander, or something. I'm sure he didn't pass me. Allie and I had a good laugh as I feigned the disdain of a poor loser. She suggested it was blog material because of its hilarity. Yeah, but it's a little off topic, I thought. Until the spiritual significance and a pattern dawned on me this morning.

My 25 year old niece, who we all love, has moved in with us and is athletic (but not competitive). She is a team player par excellence and maximizer of others. So it is, that I am getting what I consider an extreme amount of exercise by virtue of spending quality time with her. Today we headed for our ocean front exercise loop which includes 8 flights of stairs. She runs. I walk.

Walking by myself has its benefits. I can sort through my thoughts rather than chatter and usually end up hearing something from the Lord especially when in eyeshot of His glorious ocean. The majesty of its expanse gives me pause and triggers a rush of verses and songs. Since I was alone, I could softly sing the Hallelujah... refrain that the Spirit brought to mind...your love makes me sing...your love is amazing...

Timing it so we'd end up at the car around the same time, I cut into the stairs a couple flights short of the entire loop. Descending, I caught myself scoping where Kathryn was from the top of each flight not just to synchronize, but to see if she was gaining on me!

I was not doing too bad for a 45 year old, non-athlete. Wait! What's wrong with me. You don't have to be first at everything. Then the tie-in came to me. A lesson from years back that I obviously haven't fully internalized. Am I so busy watching the other sheep that I've taken my eyes off the Shepherd?

Sadly, even within the disability world, there is competition and comparison that deters us from seeing who Jesus is and what God has just for us. We compare skills, deficits, levels of functioning, meds, therapies, and effectiveness. We compare siblings, expectations, and outcomes. To a degree this is discernment but much of it is distracting and even idolatrous.

I am going back to re-read Phillip Keller's classic, A Shepherd Looks at Psalm 23.



"To whom will you compare me? Or who is my equal?" says the Holy One. Isaiah 40:24-26


Each one should test his own actions. Then he can take pride in himself, without comparing himself to somebody else,
Galatians 6:3-5


As long as Moses held up his hands, the Israelites were winning
, but whenever he lowered his hands, the Amalekites were winning. Exodus 17:10-12


I press on toward the goal to win
the prize for which God has called me heavenward in Christ Jesus. Philippians 3:13-15


Am I now trying to win
the approval of men, or of God? Or am I trying to please men? If I were still trying to please men, I would not be a servant of Christ. Galatians 1:9-11