I Found Myself Embracing Autism (Part 1)

Accepting autism when it’s your own child is hard. Embracing it is even harder. It pretty much requires divine intervention, especially when an additional child is being gripped by it.

The year is 2005.   Dash 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 Princess Buttercup here early today, she waved at the cashier, pointed to what she wanted, interacted with people and interacted with me.  With Dash 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, Dash.”

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 Dash in the grocery cart and drive it over the bumpy pavement of the parking lot. Dash 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.

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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 Dash has autism, and He didn’t do anything wrong in making him that way. He is holy.

____________________

Dash 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 Sketch 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!)

But What About Dash: How to explain Jesus to children on the Autism Spectrum

Last week a friend of mine asked me a question. She works for a preschool and also teaches Sunday School, and she has several kids with autism in that mix.

Her question was, “How in the world have you and Mr. Incredible taught your boys about God? How can I as a Sunday School teacher help the children in my class who are autistic gain an understanding of Jesus?”

The question is a hard one to answer, given that people with autism are visual and concrete. They like to SEE, and they like literal.  How does “Jesus lives in your heart” come across to them? I can only imagine.

While thinking about this, I was reminded of when Princess Buttercup was around 3 1/2 years old, and she understood about as much as any three year old that we all sin and need Jesus to take that away for us, and to accept Him into our hearts. It was an amazing night, the night she accepted Jesus.

I remember the following Sunday as if it is the present, not confined by time passed.

We are at church, standing in worship and I am heavily burdened with the thought, “But, what about Dash?”   How will I ever be able to explain God or Jesus to him?  He can’t “see” Jesus, he couldn’t possibly understand the concept of three persons in one, and those being invisible and living in your heart? It makes no sense. How will He ever understand?”

And God meets me right there. Stops me in my thinking tracks and says with a thunderous voice in my heart, “I made him the way he is.  I know how to reach him.”

It struck straight to my core. I didn’t have to figure it all out. God already has.

The captain crashes

One of many unusual places we found him alseep

Dash has always had sleeping problems, as is common for children with ASD’s.

At the age of 2 years 4month, he broke; he gave up his nap in the day and he gave up sleeping at night.

He was suddenly not able to calm his body down.  He would run from one end of his room to the other and crash into the wall and then reverse direction and repeat. Back and forth he’d go until 2am or later, when his body would become so exhausted it could no longer comply with his mind and he would collapse into required sleep.  This is when we “knew” something was wrong and started delving into researching what this could be.

Eventually we discovered Melatonin (Benadryl did not work) and we could finally get him to sleep at a reasonable time–compared to 2am, not reasonable for most 2 year olds!  He’d still often wake up in the night and play and just stay awake.  He slept anywhere between 2 and 6 hours a night.

So when I heard him up in the middle of the night one night shortly after God convinced me that He could reach him, I wasn’t too surprised.

I was surprised, however, to hear what I heard.

I imagine he was standing on his bed, but I don’t know this as the door was closed and I did not interrupt what was going on.  I felt like I was standing on Holy ground.

At the top of his lungs, he was singing, “I stand amazed in the presence, of Jesus the Nazarene, and wonder how he could love me, a sinner condemned unclean.” You can listen to the song here: I Stand Amazed (How Marvelous)

I wonder to this day, what happened in that room.   When I am in Heaven and can ask such questions, I fully expect to find out that Jesus was there; in his room. And Dash stood amazed in his presence. Goosebumps rise and I quiver just thinking about it.

I imagine he was singing the words to the song that explained what was happening at the time. He would often use phrases from songs to say what he didn’t have words for. He didn’t know how to comment, but what he’d see would remind him of a song, so he’d sing it.  Just like the time when I was pouring berry juice concentrate that was a deep dark blue-purple.  Instead of saying, “Wow, that sure is blue!” , he started singing, “I’m so Blue-ue-ue Blue-ue-ue Blue-ue-ue-Ue, I’m so Blue I don’t know what to do!” (from Madame Blueberry, VeggieTales)

Dash has always loved music.  Good music, like the kind we like (insert snicker).

He could sing before he could say words, which wasn’t until he was well over 3 years old.  Every night we all cuddle together on the couch and watch music videos of our favorite artists. We listen to music in the car, in the house. All the time.

Music has a way of reaching us where plain words to not; music can bypass the brain and go straight to the heart.

And God used that, to reach Dash.  He used music to bypass the literal, the visual and penetrate his soul.

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So back to the original question:  How do we teach the boys about Jesus; how do you teach children with autism about God?

Taking apart what has happened so far in Dash’s 9 year old life, I guess my answer would be mostly to pray for God to reveal himself in a way that he can understand; to reach him.  Next to that, I would recommend using visual tools like felt boards, and pray. And I would recommend using music to teach, and to pray.

Basically, I don’t think I did anything but provide an atmosphere that made it easier for them (Dash, and Sketch who is 7 years old and also has autism) to understand and then let God reach them, his way. No one is too hard for God to reach.  And it may not be “hard” at all, just different. Some people with ASD’s have a more-than-usual closeness to God, they are very aware of his presence.

All this being said, I encourage you to remember that we don’t have to figure it all out. God already has. Our best tool is prayer.

2 Cor 10:4  “The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.”

To us mere neuro-typical types, autism can seem like a stronghold. I think this is because we don’t understand it all.  But God does.  And we are called to pray, which holds divine power to break though…to reach.

2 Chronicles 7:14-15 

“if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and I will forgive their sin and will heal their land.  Now my eyes will be open and my ears attentive to the prayers offered in this place.

 

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