Thursday, July 21, 2011

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.


Linda said...

Bless you, dear ones! You're always in our hearts and prayers. God has and will continue to walk every step with you. I suspect He will teach you things and bless you in ways the rest of us will miss out on. He does things like that because He loves you so much.


Kelly said...

I just found your blog from reading your comment on Jess/Diary of a Mom blog. I look forward to getting to "know" you. We are sort of new to autismland as well. We've been on the edges for years, reading, wondering...but just recently getting answers.

Christie said...

Wow, you guys really have been going through a lot. Your blog post was incredibly moving - I couldn't stop getting teary eyed while reading. How amazing that you guys still returned to Africa, even with this new path you're on. I pray that God continues to give you grace, wisdom and strength.

-Christie ("Those Winklers")

Annie Eskeldson said...

Love your blog! And congratulations for all the up and coming blessings you are going to experience. Autism is challenging, but I can tell, you are going to find every ounce of joy there is in it. You will be blessed!