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Ah, just the idea of it makes me happy…the sun, the pool, the frosty beverages! Winter time vacations to warm climates are my thing. My family loves them. The kids are excited to get up super early when they know a fun destination is awaiting them on the other side. They are okay with airport food because they know smoothies and frozen treats are on the way! It’s glorious. That is, until you actually GET on vacation.

We decided sort of last minute this year to go visit family in Florida. Then that led to three days in Orlando, and two at Universal Studios. It’s our third time there. And, I think, memory failed us. We remembered the smiles and the good times. We remembered the special pass we get for J because of his inability to wait on a line without getting noticeably upset, pacing, stomping on strangers’ (and parents”) feet, whining and all those fun things that autism and ADHD bring to the occasion. We remembered all the moments that our Facebook lives remind us of long after the real memories have faded away.

So, we get to Orlando, check into the hotel, grab a late lunch (*note – daughter does not like the chicken nuggets but both kids love their first virgin pina colada), kids go for a swim. We all take a nap at around 5:30 pm! Wha???!! When does that ever happen?! Then we all get up, get ready and go for a late dinner (*note – daughter does not like the marinara sauce on the pasta), and back up to the room for bed.
First day done.

Next day, we wake up, go to breakfast. Kids want to go back to the pool. That’s not the plan. The plan is to go to Universal because THAT IS WHY WE ARE HERE! So, immediately, there is disappointment. Okay, shake it off mom and dad. Shake. it. off.

We have to wait before we can go. Life gets in the way sometimes. Then we have to wait for our Uber. Kids don’t like waiting. Kids not happy = first chip in the veneer of vacation.

We get to Universal and the kids can’t agree on what to do first. Suddenly, J doesn’t want to go on any of the rides we thought he would. He is afraid. Fear seems to be invading my son’s life these days and it is becoming all encompassing. He was not only afraid of rides he has loved in the past, but he was weary of eating certain foods based on whether or not he would get sick from them. He would take one look at the cooking area and already decide that it was dirty. OCD seems to be a new diagnosis on the horizon which is really no surprise after his anxiety diagnosis last year, but, still, it sucks. So, we would get him something to eat and he would ask if he was going to get sick and we would tell him no, he would look at it, or take one bite of it, and tell us he wasn’t hungry. I guess this is what I get for cooking three meals a day for him for the past 11, almost 12 years.

So, he doesn’t want to ride the rides. He doesn’t want to eat the food. Tell me again why we are here?

Back at the hotel, he seems happier. He likes the pool, he is okay with most of the food. He has his devices at the ready for his much needed down time.

But there is and always has been an immediacy to J that is a very difficult thirst to quench. It comes as part of his impulsivity from both his autism and his ADHD. It’s kind of like the Veruca Salt complex. He wants it NOW and he doesn’t care how. He can’t see the needs of others or even his own barest necessities. He only knows he is not getting what he wants and, because he is high-functioning and verbal, he is accurately able to express to us his discontent.

And that leads to my becoming impatient. I am annoyed that what is supposed to be fun is the source of frustration for me, and my son and my daughter and husband who have to navigate their vacations through this all as well, because we are a family, a team, and we stick together, even when it sucks.

I mean, sure, my husband and I do plenty of divide and conquer, but sometimes it’s not possible, or not the way we think things should go. Allowing J to opt out of things is a slippery slope of isolationism that we do not want for him in his life, and we don’t really think he wants either, if he was able to reflect back and see that for himself. It’s part of being his advocates. We sometimes have to ask him to do things he doesn’t really want to do.

So, here we are…on vacation and running out of patience. There’s no school or work to go to that provides us a break from one another. There’s no running out to the store for a half hour to just get away for a bit and regroup. You are on all the time on vacation. And you are navigating situations that don’t occur in your everyday lives. You are forced to deal with everything as it comes. Sometimes, that means ignoring things, but not often. It means you are out of the custom and comfort of daily routines. It means that more is being expected of my boy because we are in unchartered territory. It’s not just about his not listening, but about his inability to listen because he is hardwired differently and does not posses the skills, in that sensory overload moment, to comply.

And I forget. I resent it. I snap. I speak through gritted teeth. I raise my voice. I say ‘no’ more than usual. I can’t give him what he wants. And that feels awful because the point of family vacations is for us to regroup, recalibrate and find the fun together again. I mean, isn’t it?

And then after the breakdown however small, I feel the guilt. I am overwhelmed by it the way J is overwhelmed by the fear of entering a place that scares him or is too much for his already weakened sensory system. And even though I know that is normal to have a tipping point, and to feel all of the things I am feeling but I can’t stop feeling like shit about it which makes me feel shittier about all of it. It’s a very vicious cycle that I can’t get out of. I feel like the hamster on the wheel, just spinning and running out of steam, getting absolutely nowhere. I have lost my patience for the things that usually don’t require much. I lose patience with my husband who has done nothing wrong. I lose patience with my daughter who is being such a trooper and not letting all of this ruin her good time but can’t help, at 9 years old, to have a moment or two herself. I have no patience for my impatience!!! I just want to have fun and relax a little, is that too much to ask?!?!

I’ll never know what it’s like to go on vacation like a family with typical children. Our plans will always have to be a little more deliberate and less erratic. Chaos is paramount with failure. I will always have to stay on my toes to make sure that the other kids are being nice. Like, last night when I finally said “fuck it” and had two drinks at dinner, and then find out at the end of the night that some kids flipped Jackson over in his tube in the lazy river when the kids were having a late night swim after a full day at the parks and dinner. See, I let my guard down, and something happened. I know that things will happen and I can’t protect him from everything. More importantly, that I shouldn’t because he needs to learn how to navigate these situations for himself as they come but, still, I felt guilty.

I have spent more time on this trip feeling that than fun. Maybe that’s the way it has to be but I would really like to find a balance. I would love to find a way for the kids to enjoy themselves and for me to be able to as well. I think it’s possible. I don’t think it will take a miracle, but I haven’t been able to find it yet. Maybe next year…