Vacations

Day 19:  Vacations

We decided to head to the Cape today to visit Billy’s parents.  They moved to the Cape full time last year and we don’t get down to see them enough.  Between sports and activities and work, there never seems to be a weekend free.  Today was wide open so we packed some things for Coleman and then broke the news to him.  “We’re going to visit Nannie and Gaga, Coleman.”  He stopped, a deer in the headlights sort of stop, and questioned, “and then…?”  He wanted to know if we were sleeping there or coming home.  “First we’ll have lunch and then come home” I told him.  “Sleep at Coley’s house?” he asked, still unsure.  “Yes, just a visit” I confirmed.  And then he was happy, walked away repeating excitedly “Visit nannie and gaga and then home!  Visit nannie and gaga and then home!”    His hesitation was certainly not a reflection of his feelings about Nannie and Gaga.  Coleman loves them.  He is just a homebody, and sleeping away from home makes him very anxious. 

After Coleman was finished the chemo, and after he was newly diagnosed with Autism, we were overwhelmed.  It was very hard to know what he wanted because his language was so limited.  In addition, he wasn’t eating orally (another blog topic, he had a g-tube inserted in his belly during the chemo treatment and had stopped eating food orally), and he just couldn’t find that zone to relax, making any visit anywhere stressful.  Coleman only wanted to be home.  As a result, we didn’t take him many places, and when we did, we would be leaving when it seemed like we had just arrived.   We would go to a cook-out at my brother’s house, walk in say hello, sit down, and Coleman would start.  “Home?” he’d plead.  There wasn’t a lot of language, but he knew what Home was.  And he just kept asking and asking and asking.  It was difficult to even hold a conversation.  And then nothing was right for him – he didn’t want his shows, didn’t want his guys, didn’t want anything.  Except to go home.  Mild behaviors would start, and then escalate, but it was more the non-stop pleading.  Sitting on my lap, asking “Home?” over and over and over again, until, really, neither of us was having fun.  Needless to say, his short attendance at day trips made overnights out of the question and he hadn’t spent a night away in a very long time, excluding his stays at the hospital which were countless. 

Until a few years ago, over Thanksgiving, when we decided to stay for the weekend at Billy’s parents’ house in the Cape.  We were going for the day for Thanksgiving anyway, and Billy’s sister and her family were staying over too.  The girls were excited to spend time with their cousin so we decided to try.  I remember it as an extraordinarily stressful day.  Coleman was having a hard time.  He didn’t have the usual shows he had at home on the DVR, there were a lot of people, and most of all, his limited language made communication frustrating for both of us – I didn’t know what he wanted, or I thought he wanted one thing but it was another.   It was getting harder and harder to keep him occupied.  On top of everything, the anxiety of being away from home, the fresh air, a walk at the beach, all contributed to make him exhausted.  I felt like his stress was bringing everyone else down.  I know my in-laws would never feel that way, but in the moment, when I couldn’t get him to relax, I was even more worried that he was ruining everyone’s day.  I just need to get him to bed, I thought.  Then everyone can relax.  So I said to him "Let's go lay down" and I brought him into the bedroom.  He was stunned that we were sleeping here.  With a complete panic in his voice, he stared at me and said “Home?” I tried to explain that we would sleep here, it would be fine, I’d stay right beside him, we’d go home tomorrow, all the calming words and phrases I had in my arsenal.  But he had this terrified look on his face, and just started to sob.  “Home?” He kept saying it and sobbing.  Even as I lay on the bed beside him, he was weeping, and he would looking up at me and ask “Home?” and then look back down and continue to quietly cry.  It was not in a spoiled temper-tantrum sort of way.  It was an honest-to-God devastated sort of way.  Like he thought we might never go home again.  And it continued, and after over an hour, I said to Billy “I can’t do this.  I can’t do this to him, he just doesn’t understand what I am trying to tell him and I can’t take this.” Billy felt the same way. We were both tired and sad, wishing things were different, and disappointed in the reality.  We called the girls into the bedroom - they hadn't seen Coleman like this before either - and asked them what they wanted to do.  At 10:30 p.m. on Thanksgiving night, we packed everything back into the car and drove home.  The girls feel asleep but Coleman stayed awake, staring ahead the entire ride until we pulled into the driveway close to midnight.  “Home” he said when I opened his door. 

Since then we have learned a lot of tricks about going on vacation and the need to prepare Coleman for overnight stays.  The most useful tools for us are the storyboards which let Coleman know exactly what we’ll be doing when we go away, and Calendars, which show him how many days we’ll be gone. Everything is told in terms of how many nights he has to sleep.  “First we go to sleep 4 times and then we can come home.”  Sometimes it works, sometimes it doesn’t.  We’ve found for Coleman the perfect trip lasts no more than 3 days.   That is the amount of time he can go before starting to lose focus, before starting to hyper focus on getting home.  So when we head to the Cape for our summer vacation, I usually bring him back home for a midweek break.  Twenty four hours back in his environment gives him a great re-charge and then we can head back and tackle the second, last half of the week.  This was the same for our ski week up at Loon over school break – he and I came home mid-week to recharge.  This also gives the girls some much needed time without Coleman to do fun things that are far more difficult to do when he is around.  Billy took them to see a play at Loon while we were home, and they went fishing at the Cape while Coleman and I were home.  So it gives everyone a break, time to reboot, and makes the second half of vacations far more doable. 

For today, it was just a day trip to the Cape.  He was wonderful, despite our super late bedtime last night after the birthday party.  We had a nice visit, went to lunch, and headed back home again.  And per usual, we were only on the road a short time before the girls fell asleep.  Coleman, however, remained focused straight ahead for the full hour.  We pulled into the driveway and I opened his door. “Home” he said with a smile.