AAP Ohio Representative Gloats Over Sugar, HFCS, Dye, GMO Orange End of School Food Gift
Best of Dan Olmsted: How the NYT Missed Another Story of a Lifetime

Best of Cathy Jameson: Home Away

Cat Beach
Note: Memorial Day weekend kicks off the start of summer here in America. Here's a best of from Cathy, who has a well deserved weekend "off." 

By Cathy Jameson

We started talking about taking a summer family vacation several months ago.  With as many needs as one of my children has, with my husband’s job demands being as intense as they are, and with autism reality sneaking in and breaking all of our best laid plans, it’s a good thing that we took that long to plan our getaway.  

Our plans changed two weeks before we were to leave.  They changed again one week before we were to leave.  They changed as we hit the road last weekend, too.  We normally don’t tell our typical kids that we’re leaving on grand adventures until right before we go, but I’m glad that we gave them a heads up this time.  If there’s one thing that autism has taught me and Ronan’s siblings, it’s that we have to be flexible.  If we were going to make this vacation work, we’d all have to be flexible - Ronan included.  

Ronan likes his routine.  He likes to know where his favorite books, blankies, and Wii discs are.  He also likes to know where Daddy is also.  If something’s out of place, he may get a little out of sorts.  That could include taking longer to finish a task.  It could mean he refuses to comply with a simple request.  If something is really bothering him, it could bring on some negative behavior.  Things were going fairly well for Ronan on the first day of our vacation.  They were going okay on the second day was well.  But on the third day, the day we had to drop my husband off at the airport to attend to some business that couldn’t wait until this week, that day threw Ronan over the edge.  That night, after a long day of signing Daddy Daddy Daddy Daddy Daddy, Ronan refused to go to sleep.  That’s not entirely unusual.  Ronan will have sleepless night at home, but he was hundreds of miles from the comfort of home, his routine, and now Daddy, too.  Things were getting a little more stressful for Ronan.  There were getting a lot more stressful for me.  If we were going to survive the next 3 days before my husband returned, I knew that I needed to make a change.  That would include changing my attitude.  

We were staying at a friend’s house and sharing a bedroom with the siblings.  If Ronan didn’t sleep, it was likely that the rest of us wouldn’t sleep either.  I’m usually a “cup is half-full” kind of person, but being this far from home with an irate, non-verbal child who stayed wide awake until 3am was turning me into a gloomy Gus.  Add being jarred awake at 4am after Ronan fell out of the bed he and I were sharing, and I was pretty much done with our family vacation.  Add in some odd seizure activity the next day, and I was visualizing myself hauling back down the highway heading for home.  As easily as it was to call it quits right then and there, I’m glad that I didn’t.  

As he usually does at home, Ronan bounced back.  

The next day, Ronan was not ready to explore town like the rest of us were, so the friend whom we were staying with offered to watch Ronan for me.  It’s been a year since she’s seen us, so I was hesitant to leave Ronan with her.  But my friends, especially the ones who’ve become more like family to me, are very quick to tell me, Go. You need a break.  I’m here and can handle whatever needs to be handled.  Ronan will be fine.  I’ll be fine, now go.  

So I did.  

The next day, Ronan was still not ready to head out into the world, so my daughter stayed home with him.  “Mom, go.  I can take care of him.  Get outside and enjoy the sunshine.  If I need you, I’ll call you, okay?”  Fiona is more than capable of watching Ronan, but I didn’t want her to miss out on the fun I was hoping to find outside.  Reassuring me one more time that she did not mind skipping that day’s activities, she said, “Mom, we’ll be okay.”  She knew that I was desperate to be out in the sun by the water and to breathe in the salty air.    

Not wasting a second more, I left.

Taking my youngest with me, we headed to one of the little parks that sits along with water.  Collecting sea shells and sea glass, we enjoyed every single minute we were away from the house.  Spending almost two whole hours by the seashore was the most refreshing break I’d had in a long time.  

Before heading back, I reflected on the changes we’ve had to make, not just for this vacation but over the last few years as well.  We’ve had to make quite a few - career changes, changes in where we’ve lived, changes to better the kids’ educational needs, changes in who we let provide medical treatment for Ronan.  We’ve made tons of changes.  Some have been easy to make.  Others have required a great amount of time and effort.  With everything we’ve done, and with everything we’re doing, we hope that changes will result in a positive outcome.  That hasn’t always been the case, but we work our hardest and strive for the best.

Pre-kids and pre-autism, I had never thought it would take this much work to make an enjoyable home away-from-home experience happen.  We don’t ever get to walk away from the daily grind like some other families may get to - autism and seizures don’t take vacations.  That was proven over and over again last week.  Despite that, we learned how to handle new frustrations.  We learned how to deal with different struggles we don’t normally see as well.  Other pluses came about, too.  Eventually, Ronan ended up enjoying the sunshine and a few seaside adventures.  He savored the extra Daddy time when my husband returned from that short business trip, too.  Ronan and all of his special needs - namely his dietary restrictions and most importantly wandering concerns - were well taken care of by several of our friends.  He may not be able to fully express how thankful he is to those who’ve opened their hearts and homes to us last week, but I know that he is grateful for them and for the time we’ve gotten to spend with them.  

As we get ready to head back home, Ronan’s siblings are recalling all the things we got to do while we were away.  They’ve, too, have cherished the time we got to spend together.  They’ve loved the activities we’ve gotten to do together.  We’ll all treasure the fun, family moments we’ve made even though some of this past week has required a great deal of work.  This past week has required us to be flexible and to be patient with each other.  Being flexible and patient - that’s also how we get through a typical week back home.  

Home or far away from home, it doesn’t matter where we are or that autism and seizures have followed us.  As long as we’re working together as a family, things always manage to work out.  And for that, I am grateful, too


Cathy Jameson is a Contributing Editor for Age of Autism.    

Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

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.)