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!