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When Autism Crosses the Line

Ronan bowling
By Cathy Jameson

I shared this photo (above) and short story with family and friends while we were on our Christmas vacation:

At Ronan's happy place.

He was so happy, so very happy.

I was, too.

Until he crossed the foul line.

When Ronan's gutter ball didn't knock down any of the pins, he decided to go knock down the pins himself. I booked it down the lane after him. But dang, those bowling alley lanes are so slippery.

Down I went.

Ronan kept going as fast as his ataxic, neuropathic little legs could move him with my husband scrambling not too far behind.

Ronan made it to the pins before I could get up and before either one of us could reach him.  He knocked two pins over, and before Daddy reached him, down the sweeper bar came right next to his head. Oof.

But Ronan was happy. And sometimes, even though you've left your ego (and a few tears) on the slick floor, it's okay.

Ronan 2
Cat 0
Hearts still full 

--

Ronan bowling 2When we arrived at the bowling alley earlier that day, I made a point that morning to not tell the manager about Ronan.  I don’t always do that.  Since he looks typical, I’ll sometimes give a manager a heads up:  This is Ronan.  He has autism.  If we need to cut things short, or if we need some extra assistance, we’ll let you know.  That day, I opted to not say anything about my son or about autism.  Confident that he’d love every minute of our fun day out, I was sure Ronan would do well.  He did great just two weeks prior at a bowling alley not too far from our home, so I expected a repeat that morning.  I was sorely disappointed. 

That day hurt.  I had fallen hard on my hand and my tailbone.  Physical pain racked my body.  As positive as I tried to be afterward, emotional pain tore me up.  Later that evening when I shared that day’s events online, a dear friend chimed in, “Was there video???” to which I replied, “I kinda hoped not!  But then later actually thought, ya know, it wouldn’t be bad if there was a video to show the world what regressive autism does when regressive autism gets an idea in their head.”

Ronan wanted those pins down.  Off he went down the lane toward the pins.  Nothing I said stopped him.  Nothing I did slowed Ronan down.  He was hell bent.  Horrified, instinct told me to run like hell after him.  So, I did.  With all eyes on us, including extended family who’d joined us for our fun day out, I booked it after Ronan.  Right before I went down, and as my husband cautiously picked up his pace, it felt like I was moving in slow motion.  Despite the radio station blasting one classic hard rock song after another, it felt as if you could hear a pin drop.  It also felt as if I was watching the incident from above.  Staring down at myself and at the large smudge spot I left on Lane 20, Ronan got farther and farther away. 

Hours later as I rested my very sore back and the hand that I’d fallen on, I said to my sister and my Mom, “As weird as this is going to sound, I wish someone had taken a photo…not to show Ronan in a negative way...but to show just how difficult some of his autism really is.” 

Mom looked at me. 

I looked at her. 

Without her saying a word, I knew that she’d snapped a photo of the fiasco.  

Ronan bowling 3
Ronan’s little sisters, who were desperate to help, watch Daddy carefully bring Ronan back.

My Mom didn’t view the photo, or any part of that day, as a fiasco though.  She described it with humble awe telling me that, “It was photographic proof of the self-sacrificing love Ronan’s parents give to her precious grandson.”

Self-sacrificing love.  I couldn’t agree more. 

Every single bit of our time, our efforts, and our energy – it’s all for Ronan.  We give everything.  We give always.  We give because we can.  We give without ever expecting any thanks or recognition in return.  We give because we want nothing more than for Ronan to be happy, healthy and successful. 

Over the years as I’ve advocated for Ronan, I’ve had to cross the line myself.  While crossing the line, I’ve broken a “standard protocol”.  I’ve gone “against the norm”.  Doing that more times than not, I have put doctors in their place.  I have informed legislative representatives that they’re wrong, and I have told administrators not just No, thank you but NO way!  Doing that has sometimes come with unfortunate consequences.  But no matter how many lines I’ve crossed, and no matter how many times I’ve fallen down, I’ve gotten back up.  No matter how much it hurts, I promise that I’ll always get back up again.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Sandy

Loved this blog so much, I created my own blog featuring it!! Can so relate! "Can We Ever Be Prepared for What Autism Might Throw at Us?" http://devonsjourney.com/index.php?b=482&f=rss

Betty

Granny Blue, you are amazing. Good thing will come your way. Ask for more respite services. Remind the state workers you deal with, your grandson has a legal right to the services and supports that meet his unique needs.

Anne McElroy Dachel

Cathy, give Ronan a big hug for me.

The real story of autism....a lot more than "an inability at social interaction and a lack of communication skills," as we're so often told.

Happy to share this with 5,000 on my Facebook.

Anne

MamaBear

"it felt like I was moving in slow motion" ... and only Ronan was moving quickly! No matter what you and his Daddy felt, know that all the family, watching with held breath, was on your side, cheering you on. Because that's what love does.

Gayle

Cathy you and your family are the greatest gift of love and support that Ronan could ever have. I always read your posts and they help give me the strength to continue caring for my own son with autism. May God give us all the courage to continue being there always for our sons.

Granny Blue

"I promise I will always get back up again." Please, dear Cathy hang on to that. Our grandson is 32 at 80. It has been many, many years. I never thought I would get tired, angry at being in this situation. I am tired and wish someone would take care of me. I snap to at every challenge, but it is not all day all the time that I am there. I didn't know this would happen. Please look ahead over the decades and see what might possibly happen that you don't expect that could wear you down. For my husband (also 80) it was the opposition of next of kin. If nothing else, exhausting. You are a sweetheart and are helpful to others of us. Granny Blue

Maurine Meleck

Judging from Josh's behavior when he was younger, that sounds like a pretty average autism day. Took me years to be able to shrug similar events off my shoulder like a weighted blanket. Yay mom and Ronan.

Larry

Ronan made my day! 2 Pins downed by sheer determination ...

KFuller

Such a great story of love. A bowling alley floor is a great comparison to our lives. That floor should be solid but it's so slippery it can be impossible to balance. The shoes provided don't bring any balance on that floor! We never know when Autism is going to bring us to the floor. But we always get up. Thank you for sharing your sweet family. So glad you weren't too badly hurt!!

susan

Thank you for this post, Cathy. I brought tears to my eyes.

Sally Rubin

Hi Cathy,

I read your blog every day. First of all, I hope you're on the mend. And, yay for Ronan for understanding the goal of the game and figuring out a work-around to seal a win! Thirdly, one thing that struck me in your recounting of the story was this: "It also felt as if I was watching the incident from above. Staring down at myself...." I've had this experience so many times and have thought about it over the years. I've concluded that I've got an angel hovering over me and sometimes I just get to see things from his/her perspective as a way to let me know she's there for ME.

Just a thought...

Feel better soon.

Sally Rubin

Joanie Calem

Cathy so many of those "lines" that we cross in society are truly of questionable value to start with, and our kids give us and society at large the chance to examine whether these lines even make sense. Ronan was being proactive, taking initiative to make the game work! You of course knew that it was dangerous and your mom instinct kicked in, which is what keeps us getting up again every day. I hope your body heals quickly! Thanks so much for sharing this part of your journey!

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