Out of the darkness

I've contemplated enough; I've come to this conclusion: Ten years ago, the 31 year old me was terrified at the future and determined to "fix" my son. [I was certain it was something we could easily handle and clung to the "high functioning" label many had placed on my sweet son]. Here's the thing I didn't know: autism didn't literally take away my son. In fact, we've managed delightfully in spite of it.

So, this is what I have to say to that younger, determined, "warrior-mother" me:

You will cry tears of joy as you watch your son hop on a two wheeler and proceed to ride it down the street.
You will be amazed at what a loving and protective big brother your firstborn becomes.
You will cheer with the rest of the crowd as your son runs the bases in T-ball.
You will become a voice for others, sometimes not knowingly.
You will laugh when your son uses "damn" appropriately; then desperately try to figure out when he heard you or his dad use that word. (Only to discover weeks later that he heard it while watching a Teenage Mutant Ninja Turtle movie).
You will choke back tears as you watch him perform with his peers in a music program.
You will find joy in watching your son mimic others.
You will inspire others and become a role model.
You will be speechless that suddenly, almost overnight, your son knows all the letters of the alphbet and corresponding sounds.
You will laugh in the face of the "autism gods" many times over.
You will face the future, tentatively and bravely.
You will rejoice in the miracle of 2-word phrases, then 4-words, then sentences with too many words to count.
You will come to know the "window" for learning does NOT close at 7.
You will conquer the movie theatre trauma.
You will cheer with many others at his homerun in the ball park.
You will know gratitude and humbleness to a depth you cannot imagine.
You will learn how much your son has to teach others.
You will find blessings in the darkness.
You will be able to breathe.
Somehow, someway, you will find the strength within you to be a mother to an incredible son that God gifted you with.
You will be grateful for all that he is, and sometimes for all that he isn't.

Into the light, I see the other side.

Why does this still surprise me?

We are coming into our second decade of living with autism.
The second decade--that gives me pause.

Ten years ago, I had no idea that this could continue to be so heartbreaking; such a struggle. I wasn't prepared for the roller coaster ride that would become my future. In retrospect, that makes sense; I absolutely did not have the strength then to endure or process the extent to which autism would play a part of our lives. If you read this often, you know that I try to see the blessings that fill my life because of my son.

I rarely go to the dark side. The side that leaves a festering wound that refuses to heal, like a scab I obsessively pick. This is one of those moments, I can't help myself or find my way out of the darkness. A time when I feel suffocated by how autism has robbed me of my son. How it has stolen his childhood and taken many things from my family that I have no way of getting back. How it has the power to define his future and limit his opportunities.

Autism has been on our family vacations, is part of church every Sunday, at weddings, birthdays and Christmas's. Autism is the black shadow that looms and without question is not to be ignored. It so greatly defines our being that even our typical child has suffered residual effects. Parts of his childhood are colored by the dark shadows.

A decade of living with autism.

As I wander through this darkness there are glimpses of light. Muted grays mixed within the black. The reminders that this journey has not been with out purpose; our lives are colored with unusual joy. Happiness in the little things; "ordinary miracles." A rainbow in the storm: his pure heart and genuine laughter.

The only assurance of the coming decade is this: autism will be a part of our family. The autism shadow will continue to cloud our experiences. My weapon against the darkness is prayer and attitude. Prayer pierces the darkness with light; turns the canvas of life from black and white to brilliant colors. In the next decade my son will remain a child of God, full of purpose and light. I will cling to the Lord as my guide into His light. And continue to pierce the darkness with light.

Time Capsule

Once upon a time, I was an overzealous expectant mom with a grand idea: a time capsule. We were so overjoyed to finally be pregnant; allowing ourselves to dream about this life we created. So, in the final trimester of my pregnancy I decided to make a time capsule for our beloved baby. We sent out letters to friends and family all over the country with a survey of sorts and imagined when we would open the coveted envelopes. One friend suggested when he graduated high school, another maybe when he was studying his family tree as a 10 year old. We never really settled on a time for sure; I decided I would know when the time was right; when those words would mean the most to him.

I stumbled across the box today, filled with baby outfits, his hospital hat and a pin from Northside Hospital announcing "I'm a Dad". The box also holds his first boy scouts derby car, a paint stained t-shirt from his first experience with finger paints, a beanie baby and newspapers from the day he was born. (He was born on a Sunday, so the papers are thick!) Seeing all the memorabilia put my heart in my throat for a moment. Made me reflect for a moment on all that we lost...

I'm trying not to stay in that moment, praying that truly I will know the right time to open those envelopes. The time when it will be most meaningful to my special son. There is a seed of hope inside me that believes there will be a time, in my lifetime, he will understand how special those letters are. And then, this journey will be in its own time capsule, a memory from another time when autism colored so much of our life. In the end, there is always hope.

World Autism Awareness

1 in 110
I wish those were my odds to win the lottery...I can't see that statistic now and not know the significant meaning behind it. 1 in 110 children are on the autism spectrum. Last Sunday's Parade Magazine featured the headline: "Autism's Lost Generation". It's sobering, haunting, and depressing to consider what's been lost to autism. I generally try to find the good in it; see the positive side of the hand dealt to my son. The joy he often has in his heart is genuine, pure. So, in honor of autism awareness, this is what I want you to know about autism (and my son):

*Autism robs my son of the ability to express his ideas and emotions clearly; but that doesn't mean he doesn't hear or comprehend.

*Without words, my son speaks clearly to those who are open to his world.

*Though socially challenged, he wants friends and yearns to belong as much as any other kid his age.

*Extreme sounds, sights, smells and sensations can be overwhelming to him. He was probably 9 before he could tolerate a movie theatre; 11 before he could "enjoy" fireworks. He is able to work through his sensitivity to some things, but others will always be an issue.

*We take nothing for granted. Every part of our lives is pre-planned; there is always a back up plan.

*Autism is expensive, period. It just is.

*Jackson is intiutive; he can sense people who are "on his side" and steers clear of those who are not.

*We choose to have him participate with his peers as often as possible. Our motto is "set him up for success." We expose him to as much as possible and refuse to let autism limit his experiences.

*Understand that people with autism (especially children with autism) look normal. Looks can be deceiving.

*Jackson is a creature of habit. Routine is comforting to him; change triggers anxiety.

*We celebrate the little things: haircuts, bike rides, sunflower seeds, "joint attention".

*Never underestimate his ability to problem solve. This kid has spent 13 years figuring out how to communicate his needs. Ask yourself how you would communicate in China? Further imagine you didn't even know how to use non-verbal clues or gestures to communicate.

*Breakthroughs can come when we least expect them and he tends to progress in spurts. If he's struggling academically he may be making strides socially (and vice versa).

*Please, please know that we have tried many, many "cures". Diet, check. Sonrise, check. Speech therapy, check. VB, check. TEACCH, check. Vitamin therapy, check. The list continues. Chasing the "cure" is emotionally exhausting. We're doing everything in our power to improve his quality of life; we just no longer exhaust ourselves with every new therapy.

*We love him fiercely, in a raw and sometimes painful way. He loves us purely, the only way he knows how.