I Found Myself Embracing Autism (Part 2)

Tears in a bottle
Tears in a bottle

He encapsulates the broken-hearted, and that was certainly me. He never left my side. He whispered in my ears encouraging words.

Not only did I feel as if I was loosing my son, but I was trapped in a terribly distorted misunderstanding:  I thought God broke his promise.

He didn’t.

Looking back, I know He supplied for all my needs in caring for Sage during that time. He prepared me ahead of time too:

The year is 2006, the twins are one beautiful year old.

I see them standing in the living room, their eyes wide open, curious.

Their hair is red!  I’ve always wanted children with red hair!  Hope's hair is a curly spiral of deep red and Sage’s is strawberry blonde–barely visible peach fuzz.  Oh how soft it is too!  Their faces are more adorable than I could ever have imagined: quirky smiles, chubby cheeks, rounded faces. Their tummies lead the way when they waddle around the house like penguins.

“Oh Father, you made them just perfect!” I pray.

“Yes I did. They are perfectly the way I intended them to be.”

His reply catches me off guard. I am grounded: the heaviness of His presence keeps me from moving.

A moment in time I will never forget.

And one of the reasons for that moment, was a line of string he was weaving in His tapestry of my life. He was preparing me even then, for the discovery of Sage’s autism.

God is Holy.  He doesn’t make mistakes. He knew then, that Sage has autism.  He knew he has autism and he declares him perfect. He says they are just the way he wants them to be.  He says:

“So God created mankind in his own image,
in the image of God he created them;
male and female he created them.” (Genesis 1:27)

He says, “God saw all he had made, and it was very good.” vs. 31

Who am I to tell God he is wrong?  Rom 9:20b  “Shall what is formed say to the one who formed it, ‘Why did you make me like this?”

So I accept it.  I accept that God knows what he is doing and has a purpose in it.  I see the beauty that God crafted throughout my child with autism, because of the autism.  I love him exactly the way he is.

And I give him back to God; I give him to God to fulfill his purpose in Sage’s life.

______________________

But what about Stevie? I can’t let Stevie go, too. I can’t loose both my boys!  I can’t go through this again! I can’t!

Yet it happens.

It is Spring, 2007 at China Lake Retreat Center.  I am on a weekend retreat with the women from my church.

I hear the testimony of a lady who has been in Pakistan as a missionary.  All four of her children and her husband were there for the past year, living in terrible conditions with threats on their lives for most of the time.

She talks about how one day her husband leaves with the children to go teach at the school.  They were warned to stay in hiding; that their lives were in danger. He wants to go anyway, and she is at her home alone, arguing with God.  Afraid that her family will be torn away from her…her children, gone.  God asks of her, “Who’s children are they?”  And she knew He was asking her if she would trust Him with her children, no matter what the outcome.  Did she really give them back to God? Or does she cling to them and protect them from the God who saves?

And that was the question He was asking of me.  Her words, His words, speak deep into my soul, to places that until that moment, I don’t know exist.

And I realize I have not given my almost two-year old  Stevie over to God like I gave Sage. I wanted to keep him.  I wanted him to be mine.

But God was asking me to give Him back.  To trust Him with Stevie’s life, that He knows what is best.

“Savior, He can move the mountains, He is Mighty to Save, Jesus, Mighty to Save.”  We sing the song.

But He wasn’t moving the mountain of autism.  He was moving the mountain in my heart.

He is able, but chose not to save Stevie from autism, to not heal him.  But instead he healed me.

TO BE CONTINUED (again!)

[To read part one, click here]

To read part 3, click here.

I Found Myself Embracing Autism (Part 1)

I Found Myself Embracing Autism

The year is 2005.   Sage is precisely 2 years, 7 months old.  Although he won't be officially diagnosed for a few more months, I know he has autism.

I take him to Dunkin Donuts.  His eyes miss mine as he looks somewhere else. Something out the window catches his attention (I assume) as I order donuts. He doesn't notice the people; doesn't acknowledge anyone in the store. We sit down, he stares out the window and spins his body in the bench seat.  I look for a highchair to help contain my bolting-prone toddler, but there are none.

"What a difference" I reflect.  "When I brought Hope here early today, she waved at the cashier, pointed to what she wanted, interacted with people and interacted with me.  With Sage I feel like I am sitting here alone, but with a busy child beside me. Maybe he doesn't like it here."  I have a sudden urge to escape from the building.  Memories of working with people with disabilities start to flood my  mind.  "No.  It' can't be."

"Let's go, Sage."

I carry him out.

He screams.

I am confused. He didn't seem to be enjoying himself, didn't eat the donut, didn't interact with me, so why is he upset?

We go to the grocery store to grab a few things on the way home. I put Sage in the grocery cart and drive it over the bumpy pavement of the parking lot. Sage covers his ears.

"No!"

While we go down the freezer isle, he puts his fingers up in front of his face and wiggles them...stares at them wiggling back at him.  He never did that before (and he hasn't done that since this day).

And I knew: my boy-twin has autism.

______________________

Crushed, I searched the internet.

What is the big deal about pointing anyway?  And who cares if he doesn't have eye contact...like, ever.  In some cultures that is normal--but not ours.

What's wrong with his sing-songy voice that has no words? He sounds like a Baby Einstein Puppet and I love that!

Yes he can't sit still. Yes, he likes to bounce a lot. Yes he likes to squeeze through tight places.  I love that.  I love that his version of a "hug" is to lay behind me on the couch. What is wrong with that?  Nothing!  Nothing is wrong with that, but it's listed here as a sign of Sensory Processing Disorder which is part of autism.

"Any loss of speech, babbling or social skills at any age"  I read. Oh.  Well, yes. He used to say "Thank you", and "Good Job" and one time he even made a clear sentence, "Good Job, I ate the whole thing!" at a restaurant.   He started to do many skills that never quite completely manifested.  What I now refer to as "Peek-a-boo skills".

The more red flags I learned about, the more it fit.

I try to sleep. I pray, "God, please do not let this be true!  Please, God!"

Silence.

______________________

I felt like I was loosing a child. Every time I saw him or his twin sister, I was reminded that things weren't ever going to be the way I had imagined.

I didn't know if I'd ever hear him speak; ever hear the word, "Mommy".

I had always imagined him having friends, but now I have reason to fear that he won't be able to make them.

I never thought I'd fear my child would not be invited to birthday parties, I mean that is just a part of childhood, right? Not.

Dreams were broken, shattered. All in an instant, the future was uncertain and scary.

I knew I did not want to deal with case managers and meetings and plans and reports. Not again. I had been their on the other side of the table. I'd heard the parents concerns, complaints, attempts at advocating. I'd seen it done well and not well. I did want either part.

But there I found myself.

I called a friend and told her what we were going through.  She said three words to me, that shook me to the core:

"God is holy."

My thoughts ran: He doesn't make mistakes. He made him the way that he is for a reason. He knew Sage has autism, and He didn't do anything wrong in making him that way. He is holy.

____________________

Sage was the most hyper-active child I've ever seen. He was fast and impulsive, and relentless. He could terrorize a room faster than any other child. Ever.

He also was adorable, funny and cute.  Irresistible.

But he was hard, very hard, especially when it came to naps.

At age two he suddenly didn't need them (not) and apparently he thought he didn't need to sleep at night either. We were up until 2 am often trying to get him to sleep but he wanted to run from one end of the room to the other, crashing into walls. We had to watch him all. the. time. Even leaving him long enough to use the restroom left him enough time to run out the door, or hop into the sink, or dump the contents of the refrigerator. Exhaustion does not come close to describing what we experienced.

So when the twins were four and Stevie was two, and we started to see the signs, the red flags...well, I was just not ok with that. Not at all. But it was happening anyway. Apparently God wasn't aware that this really was too much.

(TO BE CONTINUED!)

Click here for Part 2