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:

My hope is built on nothing less

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.

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

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

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.

A Song for the Road

You already know I'm a Beth Moore junkie. With five close friends--made even tighter by our weekly commitment together--I just completed her Psalms of Ascent Bible study. Who knew? The specific Psalms 120-134 were ones the Israelites had memorized, like a "Road Trip" playlist on their community ipod. On repeated treks to Jerusalem for the annual feasts, the men, women and children had those short, catchy, rhyming psalms stuck in their heads as if they were top 40 hits. Take a listen to these renditions by messianic Christian Chuck King.

The Biblical word for road trip is pilgrimage. After updating and unpacking it, I have come to love the ring of that word. I am on a pilgrimage. And so are you! Whether through autism, through marriage, through divorce, through cancer, through illness, or through a chapter in life, we are all on our way to some place else. Heaven, namely. We are never stuck but always moving on toward some thing better.

Songs make the time go faster don't they? On an arduous car ride or a harrowing adventure. Songs do a whole lot more than that. Like the hunch that there is a God, almost all of us know innately that music has a power over our soul. All agree and yet, it remains a spiritual mystery how and why music empowers our communication and binds us to the otherness of heaven. Music assists us in entering the spiritual realm. Singing enables the expression of our soul. Songs release God's power. Jesus sang with the disciples. Song originated with God and accompanied creation. Song can change our perspective. I won't pretend to explain but merely to illustrate.

Colloquially speaking, we say that, "music tames the savage beast" whether we attribute it to Shakespeare in Twelfth Night or William Congreve in The Mourning Bride. I have seen this to be true. Years before his Abilify prescription (which has also served to tame the savage beast), Reid came home from a day to top all days at school. Possibly his worst ever. Honestly, I've repressed the gory details. Suffice it to say that those days often included reports of him under a desk, chewing his shirt to shreds at the collar, hitting a teacher, being restrained by staff members, being dreadfully uncomfortable needing to poop but unable to relax enough at school to do so in their restroom with its buzzing flourescent lights, automatic flushing toilets, not to mention other patrons. It was hellish. Some combination of those had accumulated. By the time I rolled into the carpool line, the teachers could only scoop him into the car. Time to recuperate. Wait, we were due home for piano lessons.

His lessons are pretty similar to the classic variety although he takes from a beloved music therapist of 8 years. Because of her training, who she is and their established rapport, the 30 minute session retains a therapeutic quality. In fact, it often takes on a certain magic. Anyway, I was ready to bail that day, send her home and forfeit the fee. I couldn't see how Reid would ever pull himself together to attend. He collapsed into the house, eyes still red from crying and disheveled from the ravages of his day. After some ineffective cajoling and sympathetic urging to get him to the piano bench from me, Angela simply sat down herself and played something. (If I ever write a book it will have to be fiction since so many relevant details escape me.) I think it was a praise and worship song, maybe something she was dusting off for church that Sunday.

Thus began a slow-motion scene from the movie of our life. Stilled by the music, Reid rose from the crumpled pile on the floor, joined her on the bench and after 20 minutes skittered out to the kitchen a new boy. Music had transformed his day from disaster to joy. His emotional tank was refueled for whatever lay ahead. Dumbstruck and speechless, I stuttered to Angela, "how...did...i didn't...do that...can't." Angela's response I do recall, "music tames the savage beast." She's humble and accurate. I started scheming a way to have her take up permanent residence. We need a live-in pianist.

Dr. Fryman, the world renown osteopath we were privileged to see, utilizes this pipe dream wish of mine in her San Diego practice. In her 90's and still treating infants, she has mentored nearly every young osteopath worth their salt. Her treatment protocol is incredible albeit elusive. Parents are consulted with but prohibited from accompanying their child in the treatment room. At first, this policy put me off tremendously. Anticipating Reid's first appointment with her I felt as if I was relinquishing him to a demented Oz behind a curtain only to wait in t he field of monkeys. Once I got to know her though, I appreciated the method to her apparent madness. She eliminates the triangulating that can happen with kids with behavioral challenges. In this intentional way, she can treat them more individually and without distraction. The kids quickly learn to trust her calculated, consistent, predictable routine and benefit immensely from each visit. Reid would emerge out of the corridor of her round building practically stunned by an epiphany. So deep was the transformation I could perceive it in his face, stature and dare I say, soul. Osteopathy is a holistic approach.

A large part of Dr. Fryman's effectiveness is her spiritual gifting and faithfulness. Another part is her understanding of music. She employed a concert pianist who accompanied her hands-on osteopathic manipulation with live classical music. She chose music that matched the energy of the child taking "music therapy" to a new level. As the treatment progressed, she would cue the pianist with a new composer or piece that synchronized with the patient and synergized her manual adjustment. I don't think I'm extrapolating to say that she was calling upon the powers of heaven through music to heal. Many miracles quietly occur in that place.

The Listening Program, AIT, Samonas, and many musical permutations are marketed as beneficial for our kids with autism. I am not endorsing any of those, nor one over the other. We have invested in several of them at different times. I am not certain their claims are valid, provable, or worth niggling over. What they do all indicate though is that music influences our brain function.

Can you add a little music to your life today? Open yourself up to be healed, restored, redeemed. Marinade in some sound waves. Steep in a psalm.

This is what the LORD says: "Sing with joy for Jacob; shout for the foremost of the nations. Make your praises heard, and say, 'LORD, save your people, the remnant of Israel.'
Jeremiah 31:6-8



"The LORD your God is in your midst, A victorious warrior He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy. Zephaniah 3:16-18



You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. Psalm 32:7