I'm Meltinnnngg......

There are mini-miracles and there are mini-meltdowns. My preference for the former, does not exempt me from the latter. As much as I know and profess that "His mercies are new every morning," "He has a plan for good," and "works all things together for good," I don't always feel it. Yesterday, was one of those days.

Generally speaking, I am not a crier. Quite the opposite, many times I wish I could cry at retreats, memorials, or on cue when it seems appropriately feminine. One of the top #10 hurtful moments of my life was when someone accused me of being "stoic." What does that mean? I'm unfeeling, stubborn, too tough? Ouch.

Yesterday, I was raw and so, tried to hide. My heart felt like an eggshell that cracked at the slightest touch. My eyes warmed from within as tears flowed off and on each time I was alone in my car. My head ached from holding back the flow of pathetic, discouraging thoughts.

Life seemed so broken and sad, sad, sad. Recurrent loss drown me like a tidal wave.

Burgeoning under the surface was the fact that yesterday was the kids' birthday. Despite the fact that that is reason to celebrate, Reid and I ended up alone. Allie's 9th grade class trip to China left Monday night. She turned 15 surrounded by her peers. Her personal milestone was marked in a memorable way since their June 4th itinerary took them to Tiananmen Square on the 20th anniversary of the historic protest. I imagined her day as a swirling vortex of independence, fun, college-prep, global engagement, and new horizons.

Jim is in Australia on business with spotty Skype connection. A common occurrence for him to travel (and no picnic, really) but, part of the barometric pressure building in my tumultuous day. Reid's triennial IEP is next Tuesday which means I am receiving a barrage of assessments and recommendations from 5 different specialists which justify Reid's non-public placement and transition to a functional living track (as opposed to diploma bound). They also quantify his deficits in black and white detail.

These factors created a perfect storm of isolation, comparison, anxiety, and grief. I was untethered and before I knew it, thoughts were unraveling about this kid who only a mother could love (yet I wasn't). The gap between Allie's reality and Reid's existence was widening into a canyon. I was staring brokenness in the face and pining for what should be. She'll be driving and he won't. Three more years and she'll be off to college; he'll be...underfoot.

And then, guilt as I tried to not only keep Reid in his routine but also somehow create a meaningful birthday for him by my depleted self. I arrived at his school 30 minutes after lunch period with the blasted ice cream sandwiches feeling like a failure. (Are there no grocery stores in that neighborhood?)

Reid's case manager chased me down in the parking lot. Honestly, I was hoping for another hour of denial as I slipped out to the car to have my little break down (like Holly Hunter in Broadcast News.) He is awesome at his job and was preparing me for his written report of new goals. Nonetheless, he blew into the now spiraling funnel cloud of my emotions.

With his usual competence, professionalism even care, he recapped the current levels and probable goals for Reid with the summary phrase that he become "socially invisible." That hit hard; I had to evacuate fast.

That phrase irks me. I've heard his boss use it before and as much as I understand the importance and appreciate their hard working achieving it, it breaks my heart to hear it. What they mean to accomplish is have Reid blend in culturally, look like a typical teenager, and extinguish the red flags that give away his disability. I hate it as much as when Jim desperately begs him to "act normal."

Is that what we've come to? What kind of parent wants their children to be invisible? I want my children to distinguish themselves from the crowd; stand up for what they believe; and aspire to greatness! How have we stooped to such mediocrity?! Who made us compromise?

How can I hold these diametrically opposed goals --those of earth and those of heaven-- in some kind of simultaneous, healthy tension?

I used to believe, really believe that Reid would fit in somewhere and that he'd be whole somehow, healed, and that he'd achieve greatness. Am I the only one left with that hope? Can I sustain it alone? Does anyone else even care?

No one called to wish Reid a Happy Birthday until 7pm, when the two of us were already eating at Chevy's and couldn't talk anyway. Then both my credit cards were denied and I had to pay for our stupid dinner with a bad check.

Low, I'm telling you it was a low day. I am glad it's over. This is getting long enough.

Who's been there?

But you will cry out with a heavy heart, And you will wail with a broken spirit. Isaiah 65:13-15


The LORD is near to the brokenhearted And saves those who are crushed in spirit. Psalm 34:17-19

But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; 2 Corinthians 4:6-8

photo credit: www.sivacracy.net/melting.jpg

Happy "Ban the Baby Stuff" Birthday!

Today is Reid and Allie's 14th birthday.  Allie is celebrating in Yellowstone with maybe an especially large s'more at the campfire with her backpacking friends.  Reid and I will be at Chevy's with Carla and the "yippers."  Chevy's is a Mexican chain near us where the staff loudly shout birthday wishes in English and Spanish preceeded by a distinctive "yip, yip, yip." As a toddler, Reid was totally freaked out by this, dubbed them the yippers, and would anxiously inquire of us each visit, "Will there be yippers?" It is impossible to predict whether any other diners in the place have birthdays on a given night. But, we tried. At the first sight of a throng of waiters or even just one carrying the token sombrero, we'd give the warning to "cover your ears" or "get ready, here come the yippers." Advance notice (or pre-correcting as they call it at Reid's new school) really works! Tonight, we'll be ready and waiting for 'em. 

This year I have dubbed the "Ban the Baby Stuff Birthday." Somehow marketing works with Reid.  He can't resist the combination of advance notice and a catchy tune! Still enamored, obsessed, and inappropriately (:() consumed with Barney, Clifford, Elmo, and Teletubbies, Reid needs to move on.  This is the drastic measure we feel we must take. I will wipe the hard drive of baby stuff; clear the bookshelves and library basket; and prohibit any new baby material to enter the house from this date forward.

It's been a good vocabulary building opportunity. Reid asked me, "what does it mean 'ban?" And also, "where does the baby stuff go?" I answered honestly appreciating his skill of clarifying language and his submission to the plan. This may seem elementary to some but I know others will identify with the huge obstacle and catalyst for growth this represents. 

So here is my dilemma. What do I do with Arthur and Curious George? Don't you love the social skills and real life dilemmas Arthur, Francine and D.W. face and conquer? They are pragmatic heroes in my book.  I learn from Arthur. And Marc Brown wrote chapter books in addition to the picture books and videos! That gives him extra points in my rating system. Definite gray matter in the ban.

Don't get me started on George. We were discussing the ban yesterday in the car with my daughter and her friend who is a boy, also 14 and quite culturally relevant. His unsolicited comment was, "Curious George is not babyish." That was good enough for me. We can re-negotiate him? 

Way back when, I thought Curious George was a bad role model. He was always disobeying, or so I perceived. At some point along the line, my very own little monkey seemed to be a lot like George: impulsive with a huge heart, unquenchable curiosity and a penchant for pushing boundaries.  Being a good mother to him was going to require a new perogative. In a children's bookstore, I caught wind of a conversation where another customer described Curious George as the original ADHD hero.  The "good little monkey" inevitably gets into trouble and by the end of the story redeems himself with a good deed particularly suited to his unique skills and temperament.

While Reid's diagnosis is autism not ADHD, I know if I wanted that one too, we could could get it.  (I don't.) When he was young I often said if he'd lived in the 18th century he would have discovered a new continent.  Exploration was his specialty. Slow, stop, and pause were not on his control panel.

Reid knows right from wrong and can itemize it in the clear--like George on page 1

of each story. He can repeat the expectations back to the man with the yellow hat. But doing the right thing is a wholly different matter, for any of us. Do I need to give you an example? 

Reid knows it is not OK to bite people. He can win the Mind Your Manners board game hands down. However, in the heat of a moment when enough variables are thrown in like on a road trip through South Dakota with too much talking in the front seat, rental car chemicals, and a foreign scenery including bison outside the window he lost his senses, leaned over without warning, spiked from 0-10 in 20 seconds and bit Allie in the shoulder unaware. That was once, years ago. Countless times he has come up behind her, put his arms around her shoulders and spontaneously crooned, "Alllllieee I love you" with the gentlest of kisses. In those moments he is irresistible, like George.

I have also learned more about the conception of George as spelled out in the YouTube clip above and in the book The Journey that Saved Curious George by Louise Borden. The book chronicles the life of H. A. Rey and his wife as they fled Nazi Germany on a bicycle with the George manuscripts in hand. Fascinating reading to further endear you to George.

Curiosity is a very intelligent trait. An article by disability activist, Kathie Snow enumerates it quite well. Not surprisingly, she quotes one of our other family heroes, Walt Disney.  He was an out of the box thinker. Explorers, inventors, and many famous visionaries with inquisitive minds have redefined our history and culture. I wonder if we would be disabled as a society had some of our members not had such diagnosable traits.  Now there's a curious thought. 

I think we'll keep George....for another year.

"Lord, how many times shall I forgive my brother when he sins against me? Up to seven times?" Jesus answered, "I tell you, not seven times, but seventy-seven times.  Matthew 18:21-23

For I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do—this I keep on doing. Romans 7:18-20

Watch and pray so that you will not fall into temptation. The spirit is willing, but the flesh is weak. Mark 14:37

photo credits: ylunch.com, joeschedule.com