Wednesday, February 26, 2014

More Coffee, Please

A celebration of word for February...courtesy of Pinterest and my friend Maureen.

From Maureen










Monday, February 24, 2014


There is simply not enough money on this planet to make me go back to my teens. In my teens, I was far too preoccupied with trying to be perfect, and I measured my worth in academic grades. I also spent far too much time and energy seeking the approval of others and worrying that I was letting them down or wasn't good enough for them. I was like my golden retriever Daisy, who just wants everyone to love her...even the mean schnauzer who bit her butt when she was a puppy.

The difference between me and Daisy, however, is a big ol' frontal lobe of a brain that truly screws me up every bit as much as it helps me. I'm not alone in being screwed up, either. Our frontal lobes mislead us and confuse us, make us think we want one thing when we want another, lead us to speculate with wild inaccuracy what others are thinking, and generally make us behave in ways we (and those around us) simply cannot understand.

Daisy, bless her heart, doesn't suffer from such a burden. She is what she is, and that's all she is. And we love her for it. Dogs are simple. We humans have to go and complicate things, don't we?

Teenagers and young adults, whose frontal lobes experience a firestorm of hormonal chaos, have the deck stacked against them as they try to figure out who they are. They try on all sorts of costumes, play all sorts of roles, randomly vacillate between characters in ways that render them hopelessly lost and drive their parents insane.

"Who am I, really?" they ask themselves. As if the answer were a destination on a map, a goal at the end of high school, a style of clothing, or a trophy on their shelf. "Who am I, really?" The answer to that question is more a journey of growth and change rather than a destination. And that journey can be uncomfortable, painful, sacrificial, joyous...all at once.

I had no idea who I was in my teens, but I sure thought I did. Typically, I defined myself by career choice, and when I found out that women were discouraged from entering the sciences, I decided I would be a scientist.

You say I can't be a scientist because I have ovaries? Well, I'll show you!

Forget that my aptitude lay in language and literature, forget that my math scores came more from persistence and hard work than true talent, forget that I'd had my nose buried in novels since birth. I was going to be a scientist!

Fortunately, my freshman year in college--and a spectacularly disastrous semester of organic chemistry--cured me of my delusions of scientific grandeur. I still remember the day I woke up and smelled the acetone. I had a lab in the Gross Chemistry Building at Duke, and the building, for the first time, struck me as cold and vaguely hostile, with its white concrete walls, black marble floors, narrow slit windows, and pasty-faced graduate students walking around with perma-frowns on their faces, deliberately avoiding eye contact.

Gross Chemistry Building, Duke University

In the midst of our experiment, I realized that I had no idea what I was doing and--more importantly--didn't really care. Whoa!!! When had I not cared about learning something? What a strange and uncomfortable feeling it was, like wearing borrowed clothes.

Later that same day, I had to go to the English Department offices on the third floor of Allen Building on Duke's famously beautiful Main Quad.

Allen Building, Duke University
In which of these two building would you prefer to spend your time?

I thought so.

As I walked the pseudo-gothic halls of the third floor, a professor I didn't know made eye contact, smiled, and said, "Beautiful day, isn't it?" His kind, warm face sealed my determination to ditch chemistry as a major and concentrate on English. I belonged in that building, belonged in discussions of imagery and allusion in Milton's "L'Allegro" or Eliot's "Four Quartets." Studying literature wasn't a role to play; it was acting on parts of myself that were genuine, real, honest.

I never regretted the time spent pursuing science, though. A part of me finds many aspects of biology, chemistry, and physics interesting, and I still read popular science books and watch educational television. But words, language, literature...those things were (and still are) authentically me.

What drives us to project ourselves into characters whose costumes don't fit us? How do we tease apart this person "we think we're supposed to be" from the person we really are? How do we find our authentic way forward?

These days, in my late 40s, I find myself committed to Brene Brown's definition of authenticity. I work hard at letting go of that person I think I should be and actively embrace the person I am...someone who cannot be summed up in a simple resume. That daily practice keeps me on my path forward, even if I occasionally veer off into the weeds.

Truth be told, every last one of us ends up in the weeds...repeatedly. We all play dress-up and pretend to be something we're not. If we're smart, though, we learn from those mistakes. We grow from them. Taking a detour to the sciences wasn't authentically me, but the experience is a part of who I authentically am. I learned from that detour. I wouldn't trade it--or any of the other detours of my life's journey--for anything.

Still, I'm glad I found my path eventually. If nothing else, it lead me straight out of my teens so I never have to go there again.

What a relief.

How are you finding your authentic self? What mistakes and detours taught you that lesson of authenticity? Do you feel like your path has purpose and meaning that are authentic to you? Do you wish you'd done things differently?  

Gratitude Journal #227

Today, I am grateful for my word of the

Today, I am grateful for cards from friends that brighten my day!

Today, I am grateful for fountain pens.

What are you grateful for today?

Tuesday, February 18, 2014

Gratitude Journal #226

Today, I am grateful for Special Olympics and how much fun Jack had on Saturday at the Bowling Tournament.

Today, I am grateful for my sister, for her support and encouragement and love.

Today, I am grateful for George's culinary skills.

Today, I am grateful for mystery series that entertain so thoroughly. (See the first Lady Emily mystery HERE. I'm on #7 now....)

Today, I am grateful for doctors in general, specialists in particular, and other people's appointment cancellations.

Today, I am grateful for opportunities to serve.

What are you grateful for today?

Wednesday, February 12, 2014

Gratitude Journal #225

Today, I am grateful for Kleenex tissues.

Today, I am grateful that I crossed paths with Chuckles. (You'll find the story HERE).

Today, I am grateful for meetings that get things done.

Today, I am grateful for four days of school in a row without a weather delay or cancellation.

Today, I am grateful for Special Olympics bowling and how much fun Jack is having. He bowled a strike Tuesday night! The tournament is on Saturday.

Today, I am grateful for massages.

Today, I am grateful for my word of the month: coffee!


What are you grateful for today?

Friday, February 7, 2014

Random Thought

I'm shocked at the number of pins on Pinterest suggesting that inner thighs shouldn't touch. Even when I weighed 109 pounds, mine touched. Who cares?

Wouldn't it be healthier if we all focused on taking care of ourselves and loving our uniqueness instead of loathing our pieces-parts for not meeting some random, warped ideal?

Just a thought.

Thursday, February 6, 2014

February's Word: A Change in Plans

You know, I thought long and hard about February's word and decided back in mid-January that it would be Openness.

That's a great word, isn't it? I love cultivating openness. I need more openness in my life. For instance, Nick has invented four-person chess and wants all of us to play. I hate regular chess and have absolutely no desire to play it, much less learn new rules to be beaten with. But Nick is my son and I love him and I need to be open to his creative ideas.

But unfortunately, now that February is here, Openness just won't work.

We've had over 40 inches of snow in Ohio this winter. We've had days when the highs didn't reach zero, wind chills that will freeze-dry bare skin in minutes, and more days off school for plain ol' cold than anyone can remember. Tonight, George informed me tonight's low is -4 degrees Fahrenheit that the long-range forecast doesn't show temperatures reaching 32 all.

I just about cried. And then I thanked God for coffee. And automatic coffee makers that make your coffee before you get up in the morning so you will get up in the morning. Because seriously, if it weren't for hot, black coffee awaiting me in the kitchen, I would. not. get. up.

Give me coffee, people. It's all that is keeping me thawed and capable of moving and talking and typing and not shooting holes in my freezer from sheer cabin fever.

Thank you, warm, wonderful coffee. Thank you.


coffee coffee
coffee coffee coffee
coffee coffee

That's my word for February.

What is your preferred beverage for the month of February?

Wednesday, February 5, 2014

Paperwork Hell

Parents of children with disabilities deal with a lot of paperwork most parents, thankfully, never see. Last week, Jack had an appointment with his developmental pediatrician, a twice-a-year event that requires me to generate paperwork to help the doctor make medical decisions for Jack. I gather information from the schools--Jack's teachers, therapists, aides--and hand it over to Dr. S, who reads it, looks worried, asks questions (some of which I can answer, some I can't), and then proposes our next step in the quest to help Jack learn and thrive in school and life.

This year, my job of gathering data was made easier by Jack's MFE, or Multi-Factor Evaluation. Every three years, the school district must test Jack thoroughly to verify that he still qualifies for services under IDEA, or the Individuals with Disabilities Education Act. For a couple of weeks, Jack's education is interrupted by standardized testing for a wide range of deficits by a wide range of professionals, including a psychologist, speech therapist, occupational therapist, and special-education intervention specialist.

The results of this testing are brought together in a document called the ETR, or Evaluation Team Report, and all the professionals (plus the school principal, aides, and regular education teachers who work with the student) sit down with the parent to read this document aloud and discuss its implications for the child's educational progress.

I hate ETR meetings. Hate, hate, hate them.

These evaluations are a bureaucratic necessity to justify spending lots of tax money on a child who has legitimate special needs. The testing gives the professionals confidence to say certain things I already know about Jack, things they dress up in the jargon of education and child psychology and developmental medicine so pencil-pushing bureaucrats at the state level will be satisfied that everything is properly documented to provide services for Jack. I get all that.

But every third year, a pit opens in my stomach and I dread reading the results...and most especially, I dread having them read out loud to me at the meeting by kind and compassionate professionals who are delineating, in excruciating detail, every little problem our son has.

I tend not to focus on Jack's problems. I focus on his strengths. I focus on hope and progress and the joy of being his mom. I focus on solving problems because I already know what they are and the teachers, therapists, aides, and doctor help me solve them. Jack really does have an amazing team working for him.

But at ETR meetings, no one talks about solving the problems. We're there to identify and delineate the problems themselves with evidence and data.

Cold. Hard. Facts.

During our first ETR meeting, when Jack was first evaluated for services through the public school's developmental preschool, it took every single ounce of my strength and desperate prayer not to dissolve into tears during the meeting. I simply stopped listening to professional after professional read the densely-printed words in miniscule type that stretched beyond normal margins to nearly the very edges of the paper.

My brain simply shut down in self-defense. I fled to the car after the meeting and fell apart into a wet, snotty mess.

Since that first meeting, we've established that Jack doesn't test well. His test results are always below expectations and often rather useless. Meaningful test results come from kids who do their best on the test, who pay attention and want to please the tester. When you get good results, you can measure progress, evaluate where you need to put more energy, and see where goals have been met.

Jack does not like taking tests. He does not like being timed. He does not care if an adult is happy with his performance, nor does he understand why an adult would even care how he performs. Every single teacher, therapist, doctor, and psychologist who has worked with Jack has stated emphatically that their test results do not accurately assess Jack's abilities.

They do, however, show us his disabilities. And there's the irony biting me in the butt every three years. We get great results justifying Jack's qualification for services, but we rarely get good data measuring Jack's progress.

This demoralizing state of affairs, however, exists only in the paperwork. Jack is making progress...sometimes astonishing real life. That progress has no place in the ETR meeting, however. And that's why these every-third-year meetings feel like a dark and ugly descent into hell. The perspective narrows so tightly, so bureaucratically, that no light comes in.

There's just the paperwork.

Jack had MFEs starting preschool, before kindergarten, in second grade, and now in fifth grade. This one wasn't quite as hellish as the rest because the professionals did not read their reports aloud. We would have been there for three hours if they had. Instead, they summarized, and we discussed the results, making the meeting so much more humane and much, much shorter than it would have been otherwise. Then, as soon as everyone had signed off on the ETR, we began the IEP meeting.

Back-to-back meetings. In this case, it's a good thing.

An IEP, or Individualized Education Program, is a much happier document than an ETR. An IEP establishes goals for a student's therapies and education, spells out how progress will be measured and reported in the real world, and lays out (legally) the requirements that the school must meet for that child, such as aide support, extra testing time, modified curriculum, special busing, and other accommodations. I like IEP meetings. They are full of hope and positive talk and plans. We may not always be able to measure Jack's overall progress, but we can measure small things much better. We can see progress.

But there's even more paperwork generated for the IEP. I took an advanced draft of the IEP to Jack's appointment with Dr. S, which was helpful since the IEP includes the test results from the ETR (duplication of documentation that multiplies print pages), so the data was there for the doctor to evaluate. He read it, looked worried, asked questions (some of which I answered, some I couldn't), and then proposed our next step in the quest to help Jack learn and thrive in school and life.

This pilgrimage through the educational and medical systems with Jack leaves me exhausted and confused a lot of the time. No one can tell me anything with much certainty. Data may or may not be meaningful, and what works for one student or patient may or may not work for another. All we can do is muddle through and try different paths over, under, or plowing straight through until we find something that works. We document everything, which is sometimes helpful and sometimes not. But I know for certain that the team we have working on Jack's behalf is committed, caring, and skilled. We're all doing our best for him. And that matters far more than any testing can measure.

At the hospital last week, I promised I would fax the doctor the finalized paperwork from the ETR/IEP meeting that would take place two days after our appointment. But when I left that meeting at school, I had over fifty pages of documentation to send him. Needless to say, I made copies and mailed them, along with a summary of the discussion that took place at the meeting...discussion that included little tidbits of information that made us all laugh and showed just how much that team of professionals loves and cares about Jack.

Jack jumped rope for five rotations independently. His friends in the inclusion class protect him and help him, and some prefer sitting next to him because they like him so much. Jack loves science now and is beginning to work more independently in that subject. He enjoys learning on the Chrome books that are now in his classroom, and increased computer-aided instruction will likely serve Jack well. When the psychologist tried rewarding Jack's answers on a test with a "treat," Jack indignantly self-advocated: "I am not a dog!" His best friend is Sophie, and the principal will try to have her placed in the same class as Jack for sixth grade.

These are the tidbits of data I enjoy, the tidbits not documented for bureaucrats but shared by skilled, caring teachers, the tidbits that document the real Jack whom I love so much, for whom I will go through whatever is necessary to get him whatever help he needs.

That's what parents of children with disabilities do. And I thank God for the help we get from teachers, therapists, and doctors because there's no way we could do all this without them.

The paperwork alone would kill us.

Monday, February 3, 2014

Gratitude Journal #224

Today, I am grateful for the open communion table practiced in the Methodist church. All of God's children are welcome at the table of grace.

Today, I am grateful for a few days of warmer temperatures.

Today, I am grateful I didn't care about the outcome of the Superbowl. That was just sad. The steak tacos and guacamole George made, however, were delightfully happy, as was this Cheerios ad. I love the mom's face at the end!

Today, I am grateful for developmental pediatricians and teachers and therapists who care about kids with disabilities and who do all they can to help these kids grow and learn and become successful, contributing members of society. More on this later in the week.

Today, I am grateful for the soldiers, sailors, airmen, and marines who serve our country at home and abroad every day.

What are you grateful for today?