The Light(ning) Side

In Kenya we were told that the 'long rains' come in Sept/Oct, which was easy for me to remember as it should be 'fall'. Only not really.

In Congo, things are similar in the sense of dry - then wet - then dry - then wet. [Cultural tangent: We have met people who do not know how old they are in years, but how many wet seasons, which unfortunately doesn't count the years of drought...] But the timing is a bit different here. I was told when we spent time in the rainforest that the long rains come Aug. 25th. Sure enough, they did! But here on the savannah, I'm told they come end of July. Given that the past week has had at least 2 hours of rain each day, I guess they are right. So end of July it is! (not the time to go on vacation apparently...) It's been SO cold (down to 60 degrees!!)

Rain here is not in the same universe as Seattle rain (figuratively!). It is more like my limited experience with New York rain. Sun, then dark clouds, then crashing thunder and drenching downpour, and back to sun. If Seattle rains like a street band (all day long just singing my song to make a few bucks), then New York rained like the tune of a commercial (throw it at you fast). If Seattle rains like a flute solo, New York rained like a heavy metal band.

Well, over near one of the world's largest rainforests, we have heavy-metal rain. No shock there! The thunder booms in the East (always in the east) and approaches town. By watching the flashes and counting the seconds, I keep track of how close the center of the storm is from our house. You see, lightning strikes are a very real menace.

People have been killed or maimed in town by lightning. When the thunder rolls, the streets empty out like the end of a movie (forgive me. It's analogy day). A few minutes and a thriving neighborhood looks like a ghost town (see?)! If you drive by and look closely, people are crowded under porches or the overhang of a storefront waiting it out.

Once in the last two years our neighbor's house was struck. We didn't see it coming (who does?!). I was typing right here at my computer when the outlet on the wall in front of my desk (at eye level) suddenly arc'd! Thousands of watts flowing through all these wires and right over to my face. Very scary. The sound came immediately after the arc. We lost some of our equipment in our house due to the proximity and spent $300 replacing it. We were lucky! Much more could have been lost.

So now when the lightning comes within 5 miles, I disconnect us from the grid manually (just flipping a switch) whether the power is on or off. This is easy enough. But when you wake up at 4:23am to flashes and rolling thunder, it's not so fun. I sleep on the light side, so it makes sense for me to be the designated 'Lightning Control Monitor'. I'm up anyway.

Often I sit and marvel and the phenomenal light show and sheer power God displays in these storms. The fear of God makes sense and heavy metal rolling thunder becomes my awe-filled song of worship. There is nothing God cannot do!

Pole Pole

Pronounced 'POE-lay POE-lay'. This is a very useful Swahili phrase meaning 'step by step' or 'slowly slowly', 'little by little', 'one foot in front of the other', 'baby steps', 'bit by bit', 'inch by inch' - I think you get the picture. I don't think it is coincidence that 'pole' alone means 'sorry' or 'my sympathies'. When someone dies or is very sick, you can say 'pole sana kabisa' which is 'sorry very completely'. The reduplication in 'pole pole' does not mean 'sorry sorry', it is often used as an encouragement to someone struggling to finish or achieve something.
'Step by step' you will get there! But there is a kind aftertaste of sympathy.

[As a disclaimer, while I am still learning how to care for James with new understanding of his issues, this blog will not become an 'autism' blog. I will try to create for you a picture of the mosaic of stuff that is our life in Congo, autism being one of those things.]

James is making significant steps 'pole pole'. I will illustrate one of these in conversations had trying to get ready for church on Sunday.


Dec 2010
(pre-diagnosis)

Mom: "James you are walking around barefoot. It's almost time to leave for church. It starts in 15 minutes. We need to leave in 10 minutes. Please get your socks on, your shoes on and find your Bible."
James: "Uh. Okay."

5 minutes later, James reading on his floor
M: "James, it's not time to read a book. You need your socks, shoes and Bible. Please get them now."
J: "Oh. I forgot! This book was distracting me."
M: "What 3 things do you need?"
J: "socks, shoes, Bible. socks, shoes, Bible"

5 minutes later his younger siblings ready and walking out the door
M: "Ja-ames! Time to go!"
J: "I can't find my socks!"

At which point we all arrived late after him finally finding everything, or we would step in and help him finish each task. During the diagnostic process, we learned James has significant trouble processing auditory information and organizing himself (executive function).

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May 2011 (2 weeks on the GFCF Diet - gluten-free, casein-free, allergen-free)

M: "Time to get on socks and shoes for church."
J: "Okay. Can I finish reading this paragraph first?"
M: "Sure."

2 minutes later
J: "Mom, I can't find my socks!"
[No Mom was ever so happy to hear those words!]

**HE PROCESSED AUDITORY INFORMATION!! HE HEARD AND REMEMBERED!!**

M: "They're over here."
J: "Hey! I might be ready before Anna!"

**NOTING HIS OWN PROGRESS!!**
(which almost helps him in giving up his favorite food of all time: cheese)

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June 2011
(after 2 weeks on SCD: Specific Carbohydrate Diet, and routine lists established for visual input)

M: "Time to get ready for church."
J: "Already got my socks on, now I'm looking for my Bible."
M: "Way to go buddy!"

**SOME SELF-MONITORING and EXECUTIVE FUNCTION RETURNING!!**

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July 2011
(5 weeks on SCD with routines)

M: "Time to ..."
J: "I know Mom. I need to get my socks, then my shoes, fill up my water bottle and get my Bible."
[said with a cheeky grin too!]

I was almost in tears. After years of needing constant reminders to get anything done, my son is telling ME what he needs to do. He's a planner at heart after all!


I think this is what people must be talking about when they say their child was 'recovering' or 'waking up' from autistic symptoms. I feel like I have a little boy in my house I haven't seen in 5 years. That adorable little funny 3-year-old is back. Only he's almost as tall as I am by now!
He can hear me!
He can process what I'm saying!
He can plan his time!

These may seem like insignificant molecular steps toward progress, but to me they are monumental.

Mon. u. men. tal.


Pole pole we will go far!


And I am ever-so-motivated to keep up the diet!

Entering Autismland*

Years of searching for help and answers, in regards to the difficulties of our son, culminated in April in a diagnosis: Asperger's Sydrome. Those of you on our newsletter list have read some about this just this week.

We have left the unchartered waters of encopresis or Reactive Attachment Disorder, and entered the unchartered waters of Autismland. This is one of the reasons for the 'Quiet' you may have noticed here, not feeling we could be open about this quite yet.

Our first few months in Autismland have been a crash course in orientation. We were also given the added pressure to make snap decisions about treatment and care to get started before we headed back overseas for 2 years. Thankfully, they were helpful decisions. I could spend months describing how God provided over and over opening just the right doors, closing others, giving us just the right resources to get in and out of a myriad of doctors and tests. I became totally comfortable with vials of frozen pee in my freezer. I even put them there.

I will likely never forget the moment the nice family doctor referred us to Children's Hospital to 'get to the bottom' of our issues... (if she only imagined the pun possibilities!) A Hospital? Is that really necessary?

Nor the moment the receptionist on the phone told me, the Hospital's "doctors had reviewed our records" and we were being transferred to the Autism clinic...

Every feeling revolted (to steal a Jane Austen phrase).


Then I remembered.


I remembered a picture of him 3 yrs earlier at his cousin's busy birthday party.

The quiet little boy in the corner 'in his own world' drowned in adult-sized headphones. Coping by tuning out the crowd. Seemed so cute at the time.

I remembered.

I remembered often wondering, "Where is James anyway?" Often lost somewhere in a book, even before he could read like the wind.

I remembered one horrible night in the middle of jet-lagged transition, his least favorite thing. We had missed our connecting flight. Again. (You see, for him changing schedules is right up there with plucking out fingernails one by one = painful.)

The vision of the little boy, his backpack on, belonging to me, screaming his lungs out, writhing with fatigue and pain on the shiny tile in front of some 300 people in the immigration line in London's airport. Because our plans had been changed for the bajillionth time in 24 hrs.

And us, his stunned and exhausted parents, each with a younger sibling in their arms, staring at him in disbelief until the nice British Airways attendant helped him up, promising candy she never delivered. Do not promise my son something you can't deliver! (I also remember looking back over my shoulder at the jealous death stares of the masses while we were ushered to the front of the impossibly-long-for-midnight-line...)

I remembered that endearing habit of lining up all his little cars. in. straight. lines.

I remembered how the video of our sweet boy turning 2 doesn't really include any words. Train noises, yes. Intelligible words? Notsomuch. I consoled myself that he was going to be bilingual. He did speak late...

I remembered how absolutely he loved Thomas the Tank Engine and all things train. And for the next 2 months straight I would repeatedly answer the question, "Does he focus on one particular subject to the point of obsession?" Did I really make train-shaped birthday cakes for 5 consecutive years and NOT NOTICE?

One by one snippets of memory came back to me. A photo. A vision. A story.

And one after one, like salty waves seeping down into soft sand, I slowly (oh-so-slowly) accepted that we needed to knock at this ominous door marked 'Autismland'. Guess those Hospital doctors do know some things...

Well, we found the courage (and money) to knock, trusting that God would sustain us through whatever came next. Remembering that He had before.

Turns out, it is exactly where we need to be.
Hindsight is 20/20.
All begins to make sense.
Pieces fall into place.

Entering Autismland meant getting answers!
And treatments!
That work!
Even better is that changing his diet is changing his everything right now, and I am ever so thankful we knocked on this door to sail this sea.**

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P.S. If you want to reread this, this or this, they will likely make more sense now.
P.P.S. We started up a Box Brigade (see tab up top) to help get James foods he can enjoy more often.

*I borrowed the phrase 'entering Autismland' from the fabulous autism mommy blogger Jess. This is the source text.

**If you have sailed these seas, know someone who has or wonder about what it's like, it's good to start here.

Quiet but not gone

I just realized I haven't blogged in over a month. Ack! Things have been super busy since we finished school. There are a few picture finally uploaded to a facebook album if you'd like a peek at the kids and how well Joel's birthday went.

We've also just finished a long-overdue newsletter that you should see in the next week at your mailbox, real or electronic. We're hosting a guest on his way inland to help wiring a new Bible Translation office for solar panels and internet. Lots more to write! We are quiet momentarily, but not gone!!

Sending you love from dusty Congo!