Rise, and Shine!
By Cathy Jameson
We got to sneak away last week. We'd planned to do some day trips already and were going to stay somewhat local for a few days, but a friend's generosity opened up an opportunity for us to go home for a week. Going home, even if only for a short while, is always a blessing. So when we got that chance, we rerouted ourselves and headed north instead.
Photo by Fiona
While packing our bags and making sure all of Ronan's things were ready - meds, extra clothes and water-proof bedding items, his favorite book and picture, I recalled previous trips back to my favorite City by the Sea. Like last year and years before, I envisioned we'd enjoy the sun, the beaches, the food, the parks, and the company we'd get to keep. Happily, we got to do all of that! But we also faced some new challenges while traveling and while we were in town. The hardest one was when Ronan, who had done a remarkable job while we were out one evening, signed that he was all done and that he wanted to go home.
Home. Home. Home.
It took some convincing for Ronan to get out of the car that night and to come into the house where we were staying, but I felt a twinge of sadness come over me when I saw that Ronan had reached his limit. To me, this was home. Years ago, it’s where I lived, worked, made friends, and met and married my husband. I’ve made so many memories here, and it's where we hope to come back to someday, too. In my mind, even though lots of time has passed, this place still is home. But for Ronan, coming back is hard. It's a huge change in scenery, routine, and comfort zone.
The longer he took to get out of the car that night, the more I realized how quickly this trip could end. I didn’t want to pack up and have to leave our vacation early, but that’s always an option - and has been a reality for us. We’ve left weddings early. We’ve left funerals early. We’ve left Mass, grocery shopping, sports events, and work functions early. We’ve also left places as soon as we’ve arrived. Ronan dictates. His needs. His behavior. His desires trump ours. We’ve lived by that for years now. We’ll continue to do that as long as he needs us to. I was just hoping we wouldn’t have to do that last week.
I was grateful that he could communicate so well, but this time, even though Ronan has traveled quite a bit over the years, I got a little worried. It was only Wednesday when he wouldn’t budge. Sitting in the car signing home, home, home, he made it very clear that this house was not his own. It’s fun to be here - for awhile, but it was not home for him. We were planning to be in town for two more very full days. Could he rally and stay as long as the rest of us wanted to stay? Could he manage that, and would he also handle the other activities we'd planned?
I could only pray that he would.
Eventually, Ronan got out of the car. He then slowly walked into the house. Later, he smiled his beautiful smile again. It took another day for that smile to reappear, but while we were out at our favorite diner, he showed us that he was happy once more.
As much as we hope to see our kids ease into temporary new quarters and a completely new routine, we expect a few challenges to pop up for all of our kids. How we handle them determines what happens next. The night that Ronan wouldn't fall asleep while we were away, for example, left us exhausted the next day. The two mornings that Ronan woke up for the day long before the sunrise, left us even more exhausted. Not wanting to waste a single minute of our time together, we still got out, albeit a little slower and later, to enjoy the sights and sounds. We didn't rise and shine every morning. But we, including Ronan, did get to make the most of every day.
Seaside with a favorite picture
The change in our original vacation plans, the many 'Are we there yet?' questions once we hit the road, and the complaints about flat bums being sore from sitting in the car for so long did put a strain on each of us. Would we do it again? Would we abandon set plans and go with entirely new ones? Absolutely. We were home. We were together. And eventually, Ronan thrived by the ocean. Being with people who knew us long before the kids came along helped. Going out of their way to make sure we were comfortable, happy, and that Ronan had everything that he needed, friends made our week home manageable. They gave us a chance to relax and to enjoy more than just a few days away.
With how busy life is and with autism being as unpredictable as it can be, I'm glad that we ran toward the opportunity that we were given. I’m so glad that Ronan could enjoy the rest of the time we were back home, too. Home is where the heart is. Last week, it was by the water with my family and with friends who love to love us. I’ll cherish them and the time they so generously gave us. With us, they made new memories. Those will hold us over until next time.
My heart
Cathy Jameson is a Contributing Editor for Age of Autism.
Christine, so sorry it didn't work out for you and Luke (yet). I well remember not telling my kids if I was planning to take them to the circus (or whatever), and that's because I was ill with ME and didn't know how I'd be till the day arrived. Sometimes very small treats can be easier to achieve, but it must be difficult when he's set his heart on something, and older siblings are able to do them. The achievements of so many families on AoA, including Cathy of course, are awe inspiring.
Posted by: Grace Green | July 06, 2018 at 05:59 AM
Aww.
Luke picked July 4th for our trip to the ocean. I agreed because I was expecting his dad to come through with the tax return money. He has patiently waited for years, watching his older siblings come & go ...
My girls. They go all over. I have campaigned for their educational experience because I didn’t want my Caregivers Poverty to limit their future. California, Florida, Texas, Utah, St. Louis ... they go everywhere while Luke & I stay home & eat Ramen.
“Can I go?” He can & does say that now. “Me too?” No Luke, not yet. Soon ... For months & months now, he would see an airplane & say “July 4 we will be there!”
Guess what hasn’t come? Yeah. The money. I broke my son’s heart on July 3rd. I am “a liar”. Well, I didn’t mean to be but that actually exactly what I am. Not to mention the fireworks got rained out. He stood in the rain with his face looking up, waiting & waiting ...
He did giggle momentarily when I almost physically assaulted the speaker at the drive thru at McDonalds. He loves McDonalds. It was 11pm after being rain soaked & in awful traffic & we hadn’t had dinner. I waited in a very slow line, got up to the speaker & ... nothing. “Hello?”(omg, not this. Not now) Hello? (Cmoncmoncmon) Finally; “No! I won’t let you do this to us! I’m going to rip this b*tch right ...” “ May I take your order?”
Whew.
So I’m continuing the potential lie now.
Luke is picking more dates: The 8th? No; the 16th. It must be a multiple of 4. Don’t know why. “ Do you remember (90% of his sentences start with those 3 words) ... you lied about July 4?” “No! Not a lie! Just moved it” (God, no flexibility) “You lied. No fireworks. No vacation”.
I don’t know what I’m going to do but I’m going to do something. If I could get SSI to accidentally send me the amount Medicaid would pay for a month of residential care ( if I wasn’t doing it) we could go. He’s probably better off with me dead.
Posted by: Christine kincaid | July 05, 2018 at 09:01 PM
Kathy, I was on the edge of my seat not knowing how this was going to end. A sigh of relief that it worked well enough to create a good memory. Your photographs speaks so much what we would really like to have in our lives.
Thank you for sharing
Posted by: michael | July 01, 2018 at 04:22 PM
It's good to hear your family was able to get away, and that some of it was enjoyable for Ronan! Thank you for sharing some beautiful shapshots from your trip also!
Posted by: Jeannette Bishop | July 01, 2018 at 02:24 PM