Surfing the Trip

Every summer we make our annual family trek to see Grant’s extended family in the Michiana Area. Though family there is always warm and welcoming and just plain ‘ol awesome, since having Henry (and then Lucy soon after), this trip has become more of a stressful, anxiety-inducing exercise in chaos- on- the-road rather than a lovely, relaxing vacation as we used to pretend it would be; those cruel waves of autism-ness crashing all around us with rarely a break. A bit of a side note: this particular year, leading up to this trip was all the more stressful as I totalled my van the week before. You can see that here. So not only were we scrambling to get that issue settled and find a new car, Grant had to adjust his very efficient packing procedure for the new vehicle. But I digress…

Every year Grant’s family is more than supportive and accommodating to the needs of our growing, changing tribe and our peculiar particular ways.  Grant and I have learned to accept that this trip is no vacation and to appreciate whatever little time we have to visit with everyone…which never seems long enough for us but sometimes plenty long for the little ones. 

Over the last couple of years Henry really has come a long way in his development and this has made a big difference in our trek experience. Interestingly the 6-8 hour drive (depending on traffic and rest stops we need to make) hasn’t ever been too much of an issue. (Thank you mobile DVD players!) He seems to be learning to acclimate to the “new” environment (we stay with the same relatives every year) better and faster with each visit. Meltdowns and constant wails  of “ I want to go home!” have diminished greatly as has the general “manic rambunctiousness” and irritability.  (I’m quite proud of myself actually!)  😉 There are still many things that we have to pass on now because of  the little ones, such as our leisurely shopping and sight-seeing trips to Saugatuck, New Buffalo or even the outlet mall in Michigan City. Eating out has become a thing of the past. At least for now. Oh how I yearn for a Butler burger or a Stray Dog…

But we’ve discovered new ways of enjoying our time as a family with family. We’ve had to just let go of how we think or wish things to be and are much more accepting of letting things go as they will. Our relatives have accepted that we are okay with staying in for meals when everyone else goes out.  We don’t have to participate in every activity all the time and odds are we won’t. We have all learned that what matters most is getting a chance to be together and a lot times this means family coming to where we are and visiting on Henry’s terms. It is what it is for now. Keeping the little ones happy in an environment they are comfortable in allows the rest of us a much more relaxed time for catching up!

Weather and time permitting, the last few of years we have ventured to try a day or two at nearby beach on Lake Michigan. We were ready to accept the fact that if our day at the beach lasted 5 minutes or 5 hours we had to give it a try. Our first visit to the Lake with Henry two years ago was a pleasant surprise! Although he was cautious about the water and didn’t want to get wet, he still enjoyed playing in the sand and dipping his feet in the waves washing ashore. He never forgot that experience and continued to periodically talk about it until the next year when we tried it again. This time with life jackets on, both he and Lucy spent roughly 2 hours plus playing in the waves for two days in a row!

Fast forward to this year and our most recent trip last week. Whenever we would talk of our trip, all three kids would mention the beach and “Are we going to the beach?” “We have to go to the beach!” “How much longer until we get to the beach?”.  From the moment we pulled in to Aunt Janet and Uncle Ric’s, Henry was ready to get to the lake! This trip we were able to spend two wonderful afternoons at the lake with barely a meltdown! (Only one incident of sand in the eye caused a bit of an issue and really, I couldn’t much blame him!)  For a kid who has (and still is many times) been quite oppositional at. every. single. turn, this year was such a relief! The battles and outbursts at any and every  request no matter how routine or simple were almost nonexistent! This is HUGE for us! HUGE! I’m not sure I’ve stress enough how HUGE this is for us! I am giddy at the prospect that there is true improvement here and that maybe I could hope for continued improvement in the future…dare I hope? Watching the kids play in the waves, all three together, HAPPY together, I felt as if we were hanging 10 on our boards just riding out those gnarly waves of the spectrum! (Okay sure…not a lot of surf on Lake Michigan but just go with me  on this one, okay?)

At one point Grant and I lounged in our beach chairs (a first time for the two of us to be able to sit and relax together!) watching Molly and Henry and Lucy at peace in the water and with each other.  I turned to him and said, “I kinda almost feel relaxed! Like this might be almost a vacation sort of.”  

He grinned and patted my leg and said, “Good. You deserve it. Now shhhhh! Or you’ll ruin it!”

 

[Shameless Blog Promotion: Click Babble’s Top 25 Autism Spectrum Blogs and vote for me, A Chameleon’s Blog!  I am the underdog here and certainly would love to be able to break into that Top 25! I feel our story is important and love to share and connect with others affected by ASD. Thank you for your support! ~ Karen]

Surf’s Up

[ Ed. Note: I originally wrote and published this post for Cheairs at Redefining Typical in May of this year. With this summer’s vacation coming up, that hopefully will include a trip to the beach, it has me thinking about “the surf”. Since the original publishing I have  found a couple of pictures from last year’s trip to the beach.]

My son was diagnosed with PDD-NOS and ADHD at the age of 4. This was a year and a half ago. I had  suspected something was different about my little dude since he was about 2 years old, but that didn’t make hearing the words from a medical professional  any easier. A part of me felt a moment of relief to finally have an explanation for all of the struggles we had been going through up to that time. A “yes!” moment.

Then suddenly I felt as if I couldn’t breathe. It was as if I had been yanked down under the water. It was real for me.  Something physical. It was as if I was suspended in the water just below the surface. I could see but everything looked like I was peering through murky water. I could hear what the pediatrician was saying to me but he was muffled somehow. From that moment I associated the Autism Spectrum as fluid, always moving, always changing and all around me. A watery, living thing, this Spectrum.

I remember having to concentrate to breathe and struggling to try to grasp what the doctor was saying to me.  My husband, Grant, was off  literally chasing our son through the medical building because Henry just could not take being cooped up in the exam room any longer. So I was left there to try to take it all in and remember so I could share with Grant later. Our doctor was giving me literature on Autism and ADHD, a brochure for a local autism service, a business card for an agency for O.T., speech, and sensory integration therapy. I remember talking briefly about ADHD medications and do we medicate or not medicate? He wanted us to make an appointment in a month without Henry so we could discuss how he’s doing and to talk more in-depth about medication options or the option of no medications. He wanted to talk to us without distractions. He had experienced parents like me before. He knew I was probably barely retaining a fourth of what he was really saying. I realized even then that this was the doctor for us! We adore him!

Now a year and a half  later, occupational therapy and sensory integration therapy, speech and language therapy, listening therapy, evaluations, more doctor appointments, IEP’s and ABA training; it’s all still around me. I am just off shore~drifting, suspended just beneath the surface. Some days the waters are clear and calm. The waves move me back and forth, up and down and sometimes I even get to the surface to catch my breath. But another giant wave will come that pushes me back further down or an undertow that pulls at me~ always still all around me. (Click here to read about The Undertow). Doubt and worry cloud the waters. How can I help my son to navigate these waters of the Spectrum when there are days I don’t even understand it. The meltdowns and anxiety for no apparent reason! The echolalia, scripting, jargoning! The need to control. absolutely. everything. around him. The deficits in his social and emotional areas! I WANT to understand. I TRY to understand. What is going on in my son’s head? It is a question that is with me every minute of every day. Perhaps only Neptune knows…

My son has a diagnosis ON the Autism Spectrum. But our entire family is immersed IN that Spectrum. It is all around us. The realization that we are never getting out can be overwhelming. Heart-breaking. But I think because my heart aches continually, it is in my nature to try an embrace it~ all of it. The good. The bad. And sometimes even the terribly ugly. To own it. To make this Spectrum ours. What choice do we have? Because the waves will continue to come…

“You can’t stop the waves but you can learn to surf.” ~ Jon Kabat-Zinn

The continual crash of the waves can be too much some days. On these days I am physically tired from it all. But again, what choice do I have but to reach for my board and try to learn to surf those waves of the Spectrum?  To own them. To make them ours. Surfs up, my little dude!