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.

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

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