autism

A Lunderful Vacation?

by donna

I’ve struggled with my blog lately. I blame it on the summer months giving me less time to myself and less time to get my thoughts together and on paper. I have three different posts in the works but I can’t seem to pull them together into an
end-product that I’m happy with. The truth is, the beginning of summer hasn’t been so “lunderful”. The change in routine is always problematic but adding strep throat (2 rounds), wisdom teeth extractions and a family vacation I’d say these past weeks have been more like an ordeal than a summer break.

I’ve been thinking quite a bit about beach vacations where Brian is concerned. How do you take a child to the beach that really doesn’t want to go to the beach? I’ve been asking myself that question all week as my perpetual self-doubting personality definitely kicked into high gear. Interestingly though, Brian loves the ritual of preparing for a long car ride. He loves the suitcases waiting to be packed in our car and the hustle and bustle of our family trying to pull it together and get on the road. He loves the car ride  and the snacks, but mostly he loves having all his people together. He looks out the window the whole time smiling and laughing. But with years of experience I know that some things aren’t meant to be and going against my maternal instincts makes it that much worse.

I started this trip more anxious than usual because Brian was in the process of getting over strep throat. He seemed to be feeling better but without the communication it’s impossible to know exactly how he was feeling. I was not confident that he was fully recovered and was scared what could happen if we were away from our doctors. I won’t get into how hellish it is when Brian is sick — that will take the fun out of my next blog so I will stay on point. 


My youngest daughter once made the statement that “we are not a normal family.” Hearing those words from her little voice cut through me like a knife because she was indeed correct and there was nothing I could say to contradict her.  Her statement was brought home again for me last week as we went on our family vacation. 

I’m sure if I looked at the week as a whole, I could find some fun things to talk about.  However, what sits in the center of my brain were the long worrisome days…..exactly the opposite of how it should’ve been and how it was for everyone else. For my nieces and nephews every day was a grand rotation between the pool, the beach and bike riding. I watched them pack everything they could into a beautiful week at the Jersey Shore. Brian, on the other hand, imposed on himself a strict daily routine. He woke up every morning and immediately headed out to a seat under the canopy we set up for him next to the pool. There he stayed all day (with us maneuvering him to avoid the direct sun and plying him with cold water bottles) until he came to the upper deck for dinner. He refused to go into the house except at night to go to bed. He would not go into the pool, and the few times he stepped onto the beach he held onto my husband for dear life as though he thought the ocean might swallow him up. You could almost see Brian’s mind trying to figure out exactly how he was going to make this week work for himself.  I can’t pretend that there weren’t many times during the week that I wished things were different, and I can’t pretend I wasn’t experiencing the worst emotion ever….jealousy (there, I said it). Internally I struggle. Does this make sense? Is this this too much stress for my little buddy? Does being on a family vacation make me feel worse about our life?


I think I’ve built an invisible wall around myself carving out my own little world that brings me peace. I don’t engage in many things where young boys are because it hurts. It is difficult to socialize with moms of kids Brian’s age because the constant reminder of how things could’ve been is  excruciating. I broke down for a quick minute one afternoon talking to my niece Hannah. I told Hannah that watching the life of Brian’s same age cousins can be too painful at times and this was one of those times. The kids are kind and loving –that is not the issue. It just drives home a very grave situation for which there are no answers and for that matter very little help.


Because Brian did not participate at the pool or at the beach, my husband and I developed our own mid-day routine that we established on day 2 of our week. We went into town and found a shady spot where Brian could find a food he liked and we could find a Moscow mule that we like. A win for everyone! A couple times we even were able to grab some others to partake in our afternoon “Brian’s break from the beach”.  Adaptation has pretty much defined our life with autism. Most of the time I don’t even realize it anymore but on a family vacation there is no hiding how little we blend in. It’s just not the best environment for him and creates a lot of work for us. 

The Jersey Shore is a special place to me because it is where I vacationed growing up with my family and friends. It was hard not to reminisce about the days long gone and think about the people that are no longer with us. It was also hard not to think about how differently I am experiencing this lovely place as a mom. I remember as a kid fun days on the beach, swimming in the ocean and most importantly — as a true girl of the ’80s — working on a killer tan! I remember dinners out, walking around 96th Street in Stone Harbor and ending each night with an ice cream cone. I always felt best when my family was together (just like Brian). That is probably the only common link between my childhood experience of the Jersey Shore and Brian’s experience of the Jersey Shore. However, it haunts me now as a mom that my kids have experienced so much “tag teaming” over the years instead of us being able to experience everything as a family unit. If I was on the beach for an hour, Donny was back at the house with Brian and vice versa. It is our normal and years ago the “you go there, I’ll stay here” formula was adapted and accepted. 

The one thing I do know is that Brian enjoyed being around the crowd of family that was gathered. Aunts, uncles, cousins and grandparents. His favorite time was at night when we all sat on the upper deck listening to music. The challenge for us everyday was getting to that point at 7pm. I felt like our vacation and the only time we could truly relax was from 7:00 pm to 11:00 pm each day. 

At the end of the day, it’s impossible to know whether Brian would have been much happier staying at home and going to camp in a familiar environment. We don’t know whether we should continue these trips, but we don’t want to deprive him or our other children of the experience and memory of a week at the beach with family. Another example of the type of impossible choices faced by special needs parents on a daily basis and the perfect illustration of something that should have been so fun but for us was a struggle.