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The Expenses Of Autism Roll In

An Infinity of Summers

Love You ForeverNote: Cathy has this weekend off. Her post from 2017 rings true today, and is proof of the headline. The meme Cathy writes about is still in circulation, annoying autism parents to.... infinity and beyond.

By Cathy Jameson, Summer 2017

An article that people were posting on some social media pages last week caught my eye.  The tagline read, How many summers do you have until your children are grown?  Typically, it’s 18 summers a parent will spend with their child before that child ventures off into adulthood.  If my son and I had only 18 summers to spend together, we’ve just got 4 more to go. 

Four more summer vacations. 

Four more family summer road trips. 

Four more lazy summers before high school graduation, college, and independence. 

But my child’s not typical.  Our summers, like every other season of the year, are very different than those of his peers.  Half-way through is teenage years, Ronan’s very much delayed.  Non-verbal with regressive autism and seizures, he’s more dependent than other kids are. 

On constant watch – for both seizures and the potential for wandering – we still manage to have fun.  Outings to the mall, the park, and the pool happen, but only after doctor appointments and therapy sessions are over.  I’d love to have a break from it all, but with as many skills Ronan is still working on achieving, appointments and therapies are a year-round occurrence.

Where other children and their families can change up their routine, Ronan thrives on keeping things the same.  We do get to venture a tad from the norm, like when we went away last month, but those adventures require a lot of “the norm” to accompany us – favorite books, waterproof bedding, food items, and entertainment, we bring a lot of Ronan’s everyday things with us when we go.  While the surroundings may have been different, having the “comforts” of home helped keep him calm during the transition to a temporary summer routine.  Without that calm, vacation – and the relaxation the rest of us were able to experience, wouldn’t have happened.  We’ll hope for a repeat of that whenever we can schedule another getaway. 

For the next four summers, Ronan will continue to be carefully watched.  He’ll be monitored for seizures and heat intolerance.  He’ll also partake in the usual academic opportunities and therapies we schedule throughout the summer, too, so as to maintain consistency.  It’s not how I imagined each June, July, and August would be, but it’s what I need to do to keep things going for him and for us.  Of course, we pray and work toward a miracle, but if things continue as they’re going now…

Ronan won’t likely get his permit next summer. 

He won’t be working on filling out college applications the following summer. 

He won’t be paling around town with his best guy friends looking for fun stuff to do in town either. 

The siblings are aware of this and generously give me and Ronan the time and space needed to keep his days as stable as possible.  They don’t always like that they’re missing out on what their friends are getting to do, but they understand that Ronan’s special needs cannot be ignored.  The older they get, finding a balance for them hasn’t been easy, and some days, they will vocalize some of that disappointment.  They’ve been so patient with their brother for such a long time now.  Never ever blaming him directly, they’ve learned how to deal with how much of my attention is taken up by Ronan, his appointments, and long list of needs.  I’m surprised (and thrilled!) that they have been as understanding as they have been. 

In the car last week as we headed to one of Ronan’s weekly therapy sessions that doesn’t get cancelled just because it’s summer, Ronan’s younger brother said, “Mom, where do you think I’ll live when I’m a grown up?”

I told him, “I can’t yet picture where it is, but in my head I see you and Fiona sharing an apartment somewhere.”

“Yeah, I see that, too,” he replied.

“I see your little sisters living together somewhere else but close to wherever you and Fiona are,” I added.

“That would be fun if we lived near each other,” Willem shared.

“I’d come visit you, you know,” I added.

“I’d let you stay with me, you know,” Willem said with a smile.

I laughed. “Gee, thanks, honey!”

A few quiet minutes went by.  Lost in thought, I could tell that Willem wasn’t yet finished talking.  With eyes full of excitement, he began, “If I make a lot of money when I grow up, I’m going to buy you a new car.  And, then…then I’d make even more money so I can find a cure for Ronan.”

It was my eyes that were now full of excitement, “Wouldn’t it be cool if Ronan could live with you then, too?”

“That would be the best!” he gushed.

Years and years ago when Ronan was just starting elementary school, I balked when my husband talked about what we’d do during retirement.  He said, “It’ll be the three of us…we’ll travel to wherever the kids are.  We could stay with one and help them out for a few weeks, and then we’d travel to the next kiddo, and then the next kiddo… During summer vacations, the three of us would then make plans to visit friends and explore the country...” 

“Back up,” I said.  With eye brows raised, I asked, “The three of us?  Who exactly is the three of us?”

“You, me, and Ronan,” my husband said matter-of-factly.

“Ronan?” I questioned. 

“Where else would he be?” he’d asked.

It’s a dream of mine for Ronan to live off on his own like I know that my other children will.  He could roommate with Willem, or he could share a house with friends.  Right now, though, he’s a long way off from being able to do any of that.  We – his family – are his roommates.  We are his housemates.  When the next four summers end and Ronan begins the next stage of life as an adult, I imagine that my husband and I will continue to be his housemates.  It isn’t what I expected, but the older Ronan and I both get, I’m learning how to be okay with that. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

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Comments

MarkLeo

My son is seven and dad, me, is 61. I find myself in a rush to heal Leo. God forbid he ever finds himself depending on our lousy government caring for him …

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