Living on the Spectrum

When my son was first diagnosed with autism, he wasn’t quite three years old, yet.  I can’t fully describe how overwhelming that diagnosis is, but if you’ve experienced it, you know exactly what I’m talking about.  For the life of me, I couldn’t fathom what the next year would hold, let alone five or ten years down the road. 

At diagnosis, my son had been able to speak, then dropped the skill.  He was nonverbal, withdrawn in his own world.  He had no way to share that world with others.  The scariest part, at that time, was not knowing how much was going on inside his head.  My intuition told me he had a whole other world in there, thinking his thoughts all the time, but I had no tangible proof of that. 

After we started oral motor therapy, he slowly started talking.  So many surprises were in store.  Within weeks, he showed us that he already knew the alphabet, and started recognizing words.  He could count up to twenty.  When he talked, though, it was always very repetitive and singsong.  It was easier for him to almost sing the words than talk normally.  The same thoughts kept me awake each night.  Is this what speech is going to be like for him?

For the benefit of others in the early stages of diagnosis, I thought I’d give some examples of what our life looks like right now.

My son is now seven years old.  He’s able to have conversations about things that he’s interested in, but topics of non-interest are still very difficult.  He’s getting better with socializing with others, but his first love is any electronic gadget.  He’s exceptionally earnest and straightforward, but surprising.  Here are some of the conversations we have.

I asked my son to draw a sign for our front door that reads “Knock loudly, we’re downstairs.” That’s all I needed, because people are coming over to play board games and we need to be able to hear them to go let them in.

1st sign: “Knock loudly, if we don’t answer, please come back later.”
2nd sign: “Knock loudly, this is <our address>, if this isn’t where you were going, please go away.”

I tried standing next to him having him write one word at a time, but, in a super serious voice, he started arguing that it should read “…IF we’re downstairs, we may let you in.”

 ‎”Son, hand me the paper, please.”

We have signs in every room of our house. He also made a sign outside our door asking others to “Please ring our doorbell.” We don’t have a doorbell.  He drew one on the sign.

Earlier, he had kept mentioning his story.  “Mom, my story began on <date of his birth>.  I am halfway through my story.”

“Honey, you’re only seven years old.  This isn’t the halfway point.  God willing, your story is still just starting.”

He looked at me with concern.  “But Mom, your story is almost finished!”

My husband has made sure that my children are fully acquainted with ’80’s arcade games.  My son takes those characters and draws comic strips with them.  These stories are straight from his head, and different from anything he’s seen.  He draws himself as Pacman, the good guy.  This morning, he was talking about Pacman’s enemies.

“My first enemy is Knuckles, the Echidna.  My second enemy is Sonic, the Hedgehog.  Miles Tails per hour is my third enemy.”

In one of his comic strips, it shows a very happy (and accurately drawn) Pacman with thought bubbles of math problems while kicking his enemies.  He happily kicked Sonic off a cliff, making Sonic self destruct as he drops into the ocean.  The next frame is a closeup of Pacman, solving a multiplication problem (Did I mention my son is seven?).  The next image cuts to the pieces of Sonic, floating in the water (in a very cartoony, non-gory way).  Sonic’s head drifts by, saying “Um, put me back together, please.”

One of my son’s favorite topics is discussing birthdays, and how old everyone is.  He loves math.  It’s been difficult to get across that not everyone wants to have their birthday and age brought up to complete strangers. 

“Mom, how old will you be when I’m 16?”

“I don’t know, son, how old will I be?”  I refuse to do mental math.  My son and husband are so much better at it and are readily available, so they tend to be my calculators.

A look of shock passes over his face.  “Mom, you’ll be 45!”

My son is enamored with squeezing my arms.  “Mom, I love your arm fat.  You’re a fun toy!”  As my son and husband were walking through a store, my son announced “Dad, look at her arms!  That lady looks like she would be a fun toy, like Mom!  Except this lady’s skin is a different color.  Mom isn’t so dark.”  We’re working on understanding that observations, while being true, shouldn’t always be said.  Most folks who have arm fat likely don’t want it, and talking about it can make them sad (a concept that bewilders my son, he gets excited talking about how some day he’ll have his own arm fat to play with, any time he wants). 

It’s important to bear in mind that there has never been any malice intended with any of these conversations.  It’s difficult to get both my children to understand how others may react negatively to what’s being said, or that others may not consider having a huge bottom to be a good thing.  They are very honest and matter of fact.  They understand that saying please and thank you are ways to be polite.  They just don’t understand how other statements aren’t polite, even while being true.

This is something we’re working on.  I don’t despair over my children’s differences as much as at first, because I’ve seen them succeed over what was previously insurmountable.  We laugh a lot more, now.  I can tell my children that I’m confident they can figure this out, just keep trying.  They are both exceptionally bright.  The more they experience, the more they figure out. 

Yes, the social part of communication is still difficult, but we can work on that.  My children are exceptionally unique, and while that can be difficult, it also holds huge promise.  With having myself and my husband as parents, it’s not all that surprising that my children are quirky.  What makes each of us different can also be unique teaching opportunities. 

That’s not easy to see in the first stages of diagnosis, when so much is unknown.  Keep a journal.  Write down what today’s struggles are, and get your feelings down on paper.  Keep every written evaluation for your child.  The reason I say this is because most progress is going to be a series of tiny steps.  When (and if) the huge bursts of understanding come, they fill you with joy, but there will be long dry periods.  Guaranteed. 

If you don’t get reality down in writing, you’re missing the opportunity to be pleasantly shocked later at how far your child has come.  Tiny steps make huge changes over time.  If you don’t pay attention, you miss the opportunity to be blessed by this.  To be effective parents, we have to model how to cope with the challenges autism brings.  If the adults can’t cope, how will the children ever learn to?  You can do this.

Just some thoughts.

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One thought on “Living on the Spectrum

  1. After I wrote this, my son walked up to me and said, smiling, “Mom, my story is just starting, and yours is only halfway through.” Progress!

    My husband is better at posting some of my son’s more memorable comments. For instance, I apparently smell like an Xbox 360. I think he means I smell good, and in his world, few things are better than the xbox 360, but I could be wrong.

    Some quotes from my husband’s facebook:

    “Animals pee on snow…so it melts.”

    Dad (after passing a sign advertising “Home of the Super Burrito”): “Son, do you want a super burrito?”
    Son, in a very concerned voice: “Soup of burrito is not good.”

    My daughter joins in, too:

    “Some babies are cute, and some aren’t.”

    In a very appreciative voice, “Mom, you have a really big bottom!”

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