Tuesday, December 22, 2009

Top 10 Tuesday

Top 10 Ways to Engage Reid over Break

1. Take a bike ride

2. Go for an ice cream treat

3. Have talk time

4. Play flashlight tag

5. Play charades

6. Decorate the Christmas Tree

7. Do a Trampoline Show

8. Cook together - cookies, pancakes, roasted potatoes; let Reid choose

9. Play a board game

10. Watch his favorite program together then your favorite program together

I'll confess to not writing this myself. My mom did, anticipating her arrival in our home for Christmas. It means the world to me--and can lift me out of the deepest despair--that she puts her love for Reid into action. She values his role in family enough to invest the extra time, patience, and effort it takes to engage him in something other than tv viewing--the ultimate holiday cop out.

I can totally identify with the dread that came through in several comments to "Do Tell" a couple weeks ago. There is nothing restful about having to recreate the structure of his school day. If we slack off, we pay.

My mom also loves me and shows it with acts of service that relieve the burden of feeling like I have the kid "only a mother can love" at times. Especially times of increased expectations for hostessing and cooking and relaxing--all of which I enjoy--but have to measure against the pang in my gut that comes from neglecting my child's extensive needs and "program." Have you ever felt like a one-armed paper hanger...who's out of glue? I'm not saying it's impossible. I'm just saying he'll need help!

And because she's also an achiever, these came in a subsequent email:

11. Plan a Talent Show in which EVERYONE must participate.
12. Is the Country Club swim pool open? Hmmm.

Tuesday, December 15, 2009

Top 10 Tuesday

Top 10 Reasons We Left the Midwest
(the second time, 1998)

10. we'd been to San Diego

9. freezing winters

8. humid summers

7. fresh food and wine

6. progressive thinking

5. outdoor recreational options year round

4. some job opportunities are just too good to refuse

3. happy, employed husbands make for happy, stay at home moms

2. mittens, hats, and snowpants present major sensory issues

1. no surf

I love Facebook! It thrills me to reconnect with high school friends and college sorority sisters and rekindle memories at odd times of day. This one's for you Laura Battles!

For those who don't know, Jim and I both grew up in the snow belt of the Midwest, Ohio; the beautiful, more-New England-than-New England, culturally sophisticated, East Coast suburbs of Cleveland, to be specific. I'm totally serious. If you've been to Chagrin Falls, you know what I mean. If you haven't, then you have no room to talk. You must see it yourself, preferably in fall foliage.

In any case, having been there done that, we decided over a champagne toast to move to New York City right after our honeymoon. It was grand. The primary motivation for that first departure from the heartland was adventure.

A couple rungs farther up the corporate ladder, we found ourselves driving cross country to wild and crazy California. I held a stereotypical expectation that was fuzzy and not altogether flattering. Nonetheless, what's not to like?

Fast Forward 7 years. With 2 year old twins, Jim said "yes" to another offer that was too-good-to-be-true. I was crooning, "Chicago, Chicago...it's my kinda town" for weeks anticipating the joy of bringing up our children with the same Midwestern values and four seasons that we'd known. We had an idyllic house with a wrap around porch, the best climbing tree on the block, exceptional neighbors and no fences! It was grand, in a totally different way.

But, corporate America is corporate America, and relocation packages were being handed out liberally. One frostbitten January night I was sewing curtains in the midnight oil. Jim came in the door and said as tenderly as ever, "You might not want to buy any more fabric." That October, a year to the day, we left the Midwest again for Silicon Valley.

This list reflects what we've come to love about California. It is an abridged version compared to what the Travel and Tourism Commission recently garnered from Jim.

Come visit. There is always room at our inn.

Tuesday, December 8, 2009

Top 10 Tuesday

Top 10 Trampoline Tricks

10. daffy

9. can can

8. pike

7. cannonball

6. emergency stop

5. cross crawl

4. running elmo

3. 480

2. dance dance revolution Kat style

1. deadman drop

Call it what you will: brainwork, proprioception, occupational threapy, sensory integration, pure fun! We are so glad we bought this used trampoline off Craig's list for a pittance. Having gone through 3 or 4 of the small personal ones, we now wonder how we lived without this large family-size one. (Well, I guess we're all growing in size.)

Currently, it is required before homework, before a video, before dinner, pretty much before anything. Something about the way Kat calls them, "knee drop: GO!" makes the tricks even more compelling. Novelty and routine in perfect balance, like peanut btter and chocolate in a Reese's.

Friday, December 4, 2009

Do Tell!

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?

Thursday, December 3, 2009

31-derful Options

Leaving the psychiatrist's office with a new game plan (or rather the same one that I will follow more closely this time), Reid and I were early arrivals at Allie's bus stop. I decided to spring for a cookie, cinnamon roll, and iced mocha at the neighborhood bakery there. On familiar turf with the rarity of time to spare, the cloud lifted.

A song lyric rang through my mind...it's gonna be alright....

"Reid, who sings that song? It's gonna be...," I asked the master dj. Quicker than a Shazam app, he spouted back, "Sara Groves! It's on Add to the Beauty," then proceeded to sing the rest of the album. Just like Toucan Sam, he always knows.

Hope springs eternal. As the good doc offered, "If this doesn't work, I have 31 others we can try." Hmmm...that brings to mind another foundational hymn to bear in mind:

Than Jesus Christ, my righteousness.
I dare not trust in (doctors or meds),
But wholly lean on Jesus' name.

Sing it with me now

On Christ the solid Rock I stand;
All other ground is sinking sand,
All other ground is sinking sand.

Wednesday, December 2, 2009

Therapist at Work

I've mentioned that it's been a rough week. It's still raw, but if I wait to summarize it will lack the true grit that I highly esteem.

We're crawling out from under a train wreck of hormones, medication changes, and burgeoning angst. It came to a head last Monday afternoon; Day 8 of what we will now call "the wrong medicine" blew up in all of our faces. Poor Reid landed off the bus in a sobbing pile on our living room loveseat. My heart broke as all he could choke out was, "mommy...i missed the bus...."

That was only the start of the terrible, horrible, no good very bad day. I could tell the whole eight hours must have been coursing through his mind. What just happened?...How did i get here?...What have I done?...I am so glad to be home... I can't do this anymore...all coming out in rare tears from this indefatiguable, exuberant boy with stamina, courage and joy that knows know bounds. He couldn't win over the chemical warfare in his already out of sync body.

I knew most of what had transpired, thanks to a call from school--uncharacteristic aggression, a restraint, a frustrated bus aide yelling reprimands in a German accent--but of course I wasn't there. Push had come to shove at a school where they don't dance around lines in the sand once they're drawn. I'd only witnessed the beginning at 7:07 that morning:

A substitute driver stuck strictly to his time chart and drove away from our open garage door. In my pajamas and Kat's Beetle (mine in the shop), we chased him down to the next pick up in Del Mar. I can't say for sure if he saw my frizzy bedhead as I stood waving frantically in my bright orange paisley flannel bottoms, no bra and a t-shirt, but I felt hard to miss. He drove off AGAIN as Reid zipped up his backpack with one foot on the running board.

Appalled, I joked through the surging adrenaline, "OMG! I can't believe this guy. The nerve. HA! We are gonna catch that bus!" In good spirits taking it in stride, Reid said, "Mom at Austin's house I am going to get out the fast way! My backpack is ready. I'm right on target." At the off ramp of the 56 in Carmel Valley now (still closer than driving to school which is 30 minutes away), I pulled up next to the bus and motioned in an angry charade that he better wait this time. The guy was close to comatose which gave me that sickening feeling of negligence that I even put my kid in his charge. How did we get here?

Back in the brokenhearted moment I cried with Reid, "Oh baby, it's not our fault. It's the wrong medicine. We know that now. I am SO sorry. No more of it. You can stay home tomorrow. We will figure this out." I am so sorry, so very sorry. How can I make it right. The tears are still right here. How can I spare him this? Confusion. Remorse. Out of control. Haywire.

By 4:30 as I glanced out the back window from my piano lesson to see him throwing sand at the hedge, it seemed like improvement. A minor offense at this point and maybe an effective way to vent the stress of the day. I called to him as usual, "your turn with Angela now, Reid."

No reply. Did I see him come in? Check upstairs. Oscar's can? One more loop. "Jim, Reid's gone." In quick reply, all five of us--Kat, Allie, and Angela in heels, fanned out calling "Reid, say 'here i am' Reeeid!

Allie and Kat to the neighbors who have Apple TV. Not there.

Jim up the street on a bike to ones who own Sound of Music.

Finally over the back fence we heard him answer my plea, "here i am" A second reply several minutes later enabled Jim to zero in on him in the cul de sac
below our back enbankment.

Long story short, we urged his distraught body home having averted any trespassing violation. He was crying again in his lower bunk, aware that dad was angry. Now poor Angela, the music therapist cum piano teacher cum friend of the family cum fellow sojourner in the way, would have to pick up the pieces and salvage the remainder of their session. (Had she been a stickler for time, it would have been over.)

She had already earned her keep with Allie in the foyer empathizing over sibling memories of her brother with Angelman syndrome. She has been there! And is there for each of us in unique ways. She's comfortable enough in our house and was going to have better luck at this point than any of us. So, without words, she went into his room to work her therapeutic magic. The rest of us just listened and learned through the walls.

"Reid, Kingsmen is tonight. the band needs you. you're such an important part of the band. we need to practice that new song. do you think i could sing you part of it to you?" She began to sing the Beatles song they're preparing, leaving out key words which he filled in. Then suggesting that maybe it would sound better with the piano downstairs, they rallied to the bench. Order restored for the time being.

Crouched in the living room praying in a private language for peace, wisdom, some end to this... I realized they'd switched gears and were singing Sara Groves' "He's Always Been Faithful."

He has always been faithful. As I tuned in, I realized we were both getting the therapy. Angela has an intuitive way of picking songs that scratch the itch and allow the Spirit to move through the music without agenda but with definite purpose.

Last week, she'd blessed me in a different way with a VIP ticket to the American Music Therapy Association conference. It was a thrill to be close enough to touch Nathaniel Anthony Ayers, The Soloist, hear him perform, and meet his sister the next morning. Steve Lopez spoke on the panel also (more to come on this experience). He recapped Mr. Ayer's progress since the time that the book and movie came out saying that he is still not on any medicine that would fix it or clear it all away. Lopez has learned to think in terms of recovery rather than cure. Recovery defined as learning about the condition and functioning with purpose.

Then the profound clincher that compelled me to borrow a pencil from my neighbor, "I like to think that the music is the medicine. The Walt Disney Hall is the hospital. And the musicians are the doctors."

Amen brother! That has been my experience too.

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 1We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 2 Corinthians 4:8-10

May God himself, the God of peace, sanctify you through and through. The one who calls you is faithful and he will do it. Brothers, pray for us. 1 Thessalonians 5:23-25

Whenever the spirit from God came upon Saul, David would take his harp and play. Then relief would come to Saul; he would feel better, and the evil spirit would leave him.
1 Samuel 16:22-23

Tuesday, December 1, 2009

Top 10 Tuesday

Kat's Top 10 Cooking Tips

10. Drizzle toasted sesame oil as a finishing oil over cooked vegetables

9. Crunchy stuff breakfast bowl: granola, yogurt, peanut butter, chopped fruit, a glob of each

8. Chopped shallots with tomatoes, lemon and herbs make a healthy homemade dressing sans oil

7. Pouch cook chicken or fish (no clean up, no oil, all-in-one succulent meal)

5. Anything goes in a salad

4. Sangria for the beach (load chopped fruit into a cheap boxed wine the night before and go!)

3. When in doubt, brine it

2. Read Laura Hall's blog: The Good Life

You've already heard how invaluable my niece, Kathryn, has made herself since moving in. She brined and cooked our best-ever Thanksgiving turkey so I may just let her repeat that recipe for Christmas. Wanting to share the wealth with you here.

"Come, eat my food and drink the wine I have mixed.
Proverbs 9:4-6

Do not leave the salt of the covenant of your God out of your grain offerings; add salt to all your offerings.
Leviticus 2:12-14

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.

"...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