Category Archives: Asperger’s

Back…

After a miraculous whirlwind month, we are back home in Congo now.

We did fit in a few days of vacation. Much of our time was spent chasing down leads to find James an Occupational Therapist (OT). They are not plentiful in Africa, let me tell you. I will write out the details of provision later, but the short version is that we found a wonderful Belgian OT to work with in Kenya. She was able to detail James’ sensory issues and suggest a program to start him toward recovery.

This is all very new territory to me, and at times overwhelming, but we will make it through one day at a time! He is doing really well. We continue to see progress everyday on this diet!! Coming soon, more OT details and I will post a few recipes in case you like trying new things. You can ‘eat along with us’ for a few days from around the world!

The Smell of Candle Smoke

Candles provide such a serene, contemplative light. And I love to watch the delicate loops of smoke rise to the ceiling! Well, James has me thinking about candles this week…

You know that adorable toddler phase of picking up everything? The one where dirt must be tasted, smelled or rolled between the fingers to really sense it? (You know you did it!) It’s actually a very valuable thing to discover the world piece by piece. How do I know what it tastes like? I’m sure I must have tried it!

All of our kids went through this phase in some form or other. Of course the boys were more into dirt and Anna was more into washing her hands for hours on end. But the senses are such a valuable thing well-worth the investment of time.

One of James’ struggles has been what is technically called ‘tactile hyposensitivity’. It basically means some of the wires in the ‘sense of touch’ part of the brain are confused or not working properly. And we thought he was such a cute little tough guy being able to watch the needle go in his arm for a blood draw without a flinch or cry… know we now what was really at work there!

This past week, James seems to be discovering his body and the world around him all over again! It’s the absolute funnest thing to watch!

“Mom! Smell this candle smoke! Doesn’t it smell funny? I wonder if I can catch it in my hands??!”

Believe me, he has had plenty of exposure to candle smoke before. We light candles at dinner for the entire months of December and February. Surely, this wouldn’t be a huge discovery for him? But it is.

“What? This guava is too ripe and squishy!”

Mom: “But you ate the same kind last week and the week before that and didn’t care.”

“Well it’s gross. I don’t really like the taste of guavas.”

(two siblings eating them up don’t seem to mind…)

Mom: “But you used to love them!”

“Well, I guess I like them if they are mostly green.”

Mr. Picky Discerning Tastes, where did you come from?

Foods he has eaten without comment for years have suddenly changed. Everything tastes different to him. Each meal is a discovery!

“I love this spice!”

He seems to be awakening all over again to the amazing world we live in.

The smell of rain.

The smell of candle smoke.

The delicious taste of ripe fruits.

The taste of spices.

It is a whole new world for James. One where he gives out the hugs and asks to be tickled (two things he hasn’t done for at least 5 years).

It is a whole new world for his Mom.

But a wonderful one

we are so grateful for the glorious senses

to hear,

to taste,

to feel,

to smell and

to see this shadow of a world.

Watching him discover things makes me realize how rich I am.

Rich with a Sage nose that can smell out any treat or disaster.

Rich with an ear for music.

James, through his struggles, teaches me gratitude.

So next time you blow out a candle, I hope you take a second to watch the gorgeous smoke rise, smell it with me and thank God for senses!



We are coming up on 3 months of James eating allergen-free foods on DAN protocol, and 2 months of being on the SCD (Specific Carbohydrate Diet, linked over in the sidebar). I had heard amazing stories about autistic kids finding healing on SCD, but had not read anything specific about sensory issues. Apparently, this diet has helped sensory issues in other families too.

Meltdown

Two steps forward, one step back.

I can feel the progress, but it’s harder to appreciate it on the ‘one-step-back’ days.

Like today.

The bedtime chapter book we’ve been reading is lost. Somehow this is a magnanimous disaster for my routine-loving boy. Routines are safety. And dealing with changes at the end of a long day, well sometimes, it’s just too much to ask.

Some AS kids have meltdowns that look like a toddler tantrum on steroids. Screaming, kicking, throw-yourself-on-the-ground to deal with the inner pain of sensory overload or fearsome changes. Not my son. His are pretty stealthy meltdowns and I can’t often see them building under the surface. He retreats, disappears, stops talking, starts bawling, tears streaming down his face that the day simply can’t go on because the book is missing and he needs storytime.

Skipping stories is a big deal to a kid who lives to read stories.

So tonight we meltdown.

The routine is not right.

And sometimes that will just have to be what it is.

As much as I have tried, as he grows, I know I cannot eliminate all disappointment and change from his life. After several minutes of melting-down we were able to move on tonight. He’s now sleeping peacefully.

But that is not how every night ends.

I don’t have to worry about those nights.

They are the yesterdays, maybe even the tomorrows, but not today.

Today I will be thankful for a long day with a short meltdown and a happily sleeping boy.

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).

——-

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)


—–

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!!**


—–

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.**

———–
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.