Age of Autism Weekly Wrap: Metals on the March
Best of AofA: Steven Salzberg: the questions about vaccines he couldn't answer in 2012

A Rough Start

Grumpy cat wake upBy Cathy Jameson

I normally play a movie for Ronan once he’s buckled into his car seat, but I turned the radio on instead. 

There’s a lady who’s sure all that glitters is gold

And she’s buying a stairway to heaven.

When she gets there she knows, if the stores are all close

With a word she can get what she came for.

Ooh, ooh, and she’s buying a stairway to heaven.

Led Zeppelin's Stairway to Heaven had just started.  “Nothing’s glittering with gold around here,” I grumbled.  Sweat, tears and frustration were more like it.

Ronan had just had a 15-minute meltdown.  It began right after he’d woken up.  It intensified when he refused to get out of bed.  It became physical when he decided he didn’t want to leave his bedroom.  It worsened when he resisted getting into the car for school. 

Wake up time is not usually difficult.  Thursday morning would be like other mornings.  Or so I thought.  Ronan began to stir just after 9am.  I let him slowly wake.  At 9:15 I pulled the covers back.  It was time to get up, change, grab a bite to eat and head to school.

Our morning started out peacefully, but the peace and calm lasted for only about 30 seconds. 

I sat on Ronan’s bed as he stirred awake and greeted him with a smile saying, “Time to get up!” 

He signed NO and put a blanket over his face.

“Come on, Buddy.  Let me change your diaper and get you into play clothes,” I continued. 

A hand emerged from the covers.  NO.

Still buried under blankets and now his pillow, I managed to get Ronan’s diaper changed and his shorts on.  Trying to get his socks on wasn’t going to be as easy.  Ronan began to kick his legs and pull them under the covers.  It took a little bit longer, but I said to Ronan cheerily, “One sock on.  Now the other one.”

Ronan was not pleased.  He signed NO, NO, NO. Then he rolled over. 

He usually offers some assistance in getting dressed, but he didn’t want to help Thursday morning.  “Almost done!”  I sang out. 

What usually takes less than five minutes took just over ten.  We had no time to waste—it was Ronan’s last day of school. 

“Come on, honey.  We need to go,” I pleaded.  Seeing that he wanted to stay snuggled under his covers I promised him he could bring his favorite blankie when he got up.  I also said he could pick a movie to watch on the way to school if he would cooperate with me.

NO, NO, NO!

Making himself one with the mattress, and somehow making himself feel 100 pounds heavier than he actually is, I picked Ronan up.  It took two attempts to actually get him up and then to steady him in my arms.  I managed to move in a forward direction only a few steps before having to readjust how I was holding him.  As we walked through the house, Ronan reached for and grabbed every wall, door, door jamb and fixture he could reach.  He started to become vocal.  In between huffing and puffing on our way to the car, I said to Ronan, “I know you don’t want to go today, but it’s your last day.  It’s time to say goodbye and to thank you to your teachers.”  More vocal protests, more wriggling this way and more reaching for something, anything to hold onto.   My muscles tightened.  My back ached.  My heart raced.  This was turning into a workout. 

It was Ronan’s last day at school.  It would be an easy morning for him--only two hours long and with a team of people who work wonders with him.  We’ve had a rough year with Ronan’s medical issues.  Some of those issues have negatively affected Ronan’s academic abilities.  The issues have contributed to great fatigue and have resulted in a reduced school day.  Making the decision to reduce his day was not easy—for us and for his team.  But, during the toughest days, and throughout all the changes we’ve had to make for Ronan to be successful, we’ve been blessed with the support of a dedicated team of professionals.  Ronan didn’t understand why I needed to bring him to his last day of school, besides it being the last day, but also so that I could once again thank those people who have, despite the odds, worked tirelessly to bring opportunity and success to my child.  Ronan didn’t care if it was the last day or not; he was doing everything he could trying to convince me to stay home. 

We were now in the garage.  As I attempted to lift Ronan into the car, he spread his arms and legs into “spider monkey” position—both arms outstretched and both legs spread out as far as he could make them reach.  To make matters worse, Ronan leaned into me as I lifted him and he gripped the rubber seal where the car door rests when it’s closed.  It’s impossible to move Ronan out of his “spider monkey death grip” position without hurting him.  Knowing I’d have to wait him out until he let go, I gritted my teeth and whispered, “This.Isn’t.Easy.Ronan.  Get in the car.  We’re late, and if you don’t get in, we’re going to be really, REALLY late.” 

No amount of talking to Ronan was helping.  He laughed at me instead.

I muttered things under my breath.  I screamed obscenities in my head.  I stood my ground.  He stood his.  Rather, he clung to his. 

It was another five sweaty minutes later before I could get Ronan into the car and then buckled.  By then, I had stopped keeping my thoughts to myself.  I thought things that I shouldn’t have thought.  I said things that I shouldn’t have said. 

And then, as quickly as the meltdown started, it stopped. 

Ronan signed, Sad, cry, sad. 

“Sad, cry, sad,” I shot back.

But I wasn’t sympathetic.  I couldn’t be when what just transpired had gotten me so riled up.

It was my turn to buckle in.  Sweat poured down my forehead.  Anger gripped my thoughts.  I sat still for a second wishing things were easier.  That’s when I started the car and heard the song.  We were already so late for school, but I sat in the car.  I closed my eyes, and I listened.  From the first note to the last, I was mesmerized. 

There’s a lady who’s sure all that glitters is gold

Life used to glitter with gold.  Sometimes I still see something shimmer, but during intense moments like the one Ronan just had, there is nothing glittery or shimmery about them.  They are gritty, hard and, dang it, they hurt.    

And my spirit is crying for leaving.

I felt an ache in my heart.  It matched the lamenting I heard in the lyrics.  So many things I have wondered.  So many things I have cried over.  So many instances when I have asked myself if I am doing the right thing.  So many times I’ve wished this path to be different. 

I snapped to.  I put the car into Drive and eased onto the road.  Ronan signed open asking me to open the TV screen so he could watch a movie. I signed no.  No thank you.  Not because I wanted to listen to the rest of the song, but because he had chosen to fight instead of follow directions. 

The song continued.  I thought of the small, painfully slow steps it takes to get things done with Ronan.  I thought of the times we’ve fallen down—both physically and figuratively.  I thought of how vocal Ronan was in protesting decisions I’ve made for him.  I thought of how vocal I’ve had to be to protect him.  I looked back at Ronan in the rearview mirror.  He was quiet and staring out the window.  We were almost to school.  I looked back at Ronan again when we were at a red light.  “Hey, Ronan.  Hey, I’m sorry I got upset.  I’m sorry.”  I reached for Ronan, but he wouldn’t look at me.  I didn’t blame him. 

And a new day will dawn for those who stand long

We pulled into the school parking lot.  His teacher was waiting for us.  Getting Ronan into school was uneventful.  He quietly held my hand and we walked into the building and down the hallway.  I told her that I hoped that the morning’s events wouldn’t mess up their day.  I also thanked her for everything she’d done for us this school year.  She was integral in guiding us and in creating steps we need to take to help Ronan succeed.  As we approached the classroom, Ronan released my hand and walked in. When I returned a short time later at 12:00 to pick Ronan up, I was greeted happily by him.  He’d had a good day.  His teacher was all smiles.  “He did great!”  Yes!  That’s what I needed to hear.  The worry I had about ruining his short school day was for naught.  He rocked school one last time.

Once Ronan’s teacher and I said goodbye, I hugged Ronan and carried him to the car.  I didn’t need to carry him—he was not resisting leaving, but I carried Ronan because I had an overwhelming need to hold him and to hug him. 

Yes there are two paths you can go by but in the long run

There’s still time to change the road you’re on.

The road Ronan and I are walking is a long one.  It’s not well lit, it’s riddled with stumbling blocks and it has unnecessary diversions.  No matter how long or bumpy it may be, I know that a road, any road, is easier traveled with someone.  That’s why as I carried Ronan I whispered that I was sorry to Ronan once more.  He was busy looking at the DVD he was holding—the one he wanted me to play for the ride home.  Ronan pointed to the disc and looked at me.  “Of course, Buddy,” I said, “Let’s get that one and go home for lunch.”

In the heat of a moment, like during that morning’s massive meltdown, I forget that Ronan is shaping much of the role I play in life.  He is a guide, a light and the reason I am on this path.  Even if it’s one, slow and sometimes painful step, this is life.  This is what we live.  This is what we have to push through.  Some days I am in denial about life and about the path I’ve had to travel.  Some days I want to run away from it.  Some days I do, but only mentally.  Mentally running away is temporary.  It must be.  Too many people need me to stay present and ready to navigate that path.  It may be rough, but the path eventually smooths out, just as it did by lunchtime on Thursday.   


 

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

Full Spectrum Mama

I just had this conversation with another mom yesterday because we'd both had incidents with our children last week that made us think very dark thoughts (in my case, it was an institution's treatment of my child, in hers. a major tantrum as above)and we both thought, "How can I go on?" And your post rather answers that in that we HAVE NO CHOICE. that being said, why not try - when we have the capacity - to choose the road that brings the most peace possible, the most acceptance, etc. Because yes - wouldn't giving up sometimes be so enticing? But we cannot - for ourselves and our children...
Love,

Dan Burns

Thanks, Cat. You took me back.

Jessica Weissberg

Hi Cathy,

Have you ever tried GABA or combinations of it with theanine? What about sam-e or 5-htp? My son has greatly benefited from GABA and theanine.

All the best,
Jessica Weissberg

nhokkanen

My heart hopes that Ronan was having a wonderful dream and just didn't want to leave it -- instead of feeling physically ill and wanting to curl up into a ball.

Imagine if productive autism biomedical research could be funded equal to all the residuals from "Stairway to Heaven"....

Lori Stella

Beautiful. I need this reminder now and then. "There's still time to change the road you're on", very meaningful. I know I can still change the path for my 20 year old. Thank you!

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)