Family Vacations

We just got back from a wonderful "family" vacation in Vancouver & Victoria, B.C. We had a full week of sight-seeing, relaxing, spending quality time and making memories. It was great. Only one thing was missing. One very important thing. This was a family vacation for three - our sweet B was back home the entire time.

You see, we have a choice when it comes to vacations. We can either choose an exercise in tolerance, resilience and exhaustion or we can leave B behind. It's not an easy choice. Neither feels exactly right. We know that this was the right decision - there is absolutely no way he could have made this trip. We were continuously reminded of that: 3.5 hour flight, 1.5 hours in line at customs (NO WAY), crowds, restaurants, quiet, adult-oriented pools & hot tubs, tours, and then topped off with a 12 hour overnight delay coming home. Honestly the list is endless. He would have been miserable and 90% of what we were able to do would have been impossible. And we know that we owe it to our other son to get to experience what a vacation is supposed to be. One where we don't have to leave early, stay in a place as far away from other guests as possible, be kept up all night, and skip most (maybe all) of the tourist attractions.

And let's be honest - we NEED it too. We need the respite. A break. A break from the constant noise, the unexpected, the need to always keep our guard up, the meltdowns, the crying, the food battles, the meds, keeping track of him at all times, remaking beds from under the stripped down piles of his treasures, bathing him, wiping his hands, therapy, paperwork - all of the extras that life with B entail. And while I don't really miss any of these things when we're away, boy do I miss him. I miss the laugh, the smile, his joy and most of all, I miss feeling like a complete family. While we were gone, he was in the loving care of his saintly grandparents (a total Godsend). He went to school, followed his regular routine, was loved and spoiled and perfectly happy. He was exactly where he needed to be.

But here's the truth - he's getting robbed. Autism robs us of so many things and this is one that hurts a lot. While we may have long ago reached acceptance and love for the boy we have, there is a grieving process that happens recurrently and probably always will. We grieve for the things he can't do and the things he misses out on - the things we miss out on as a family. The things he may never do. The family life we thought we were getting vs. the one we are living.

And there's guilt. Always guilt. B is better off at home but that doesn't mean he doesn't feel like he's missing out. There have been several painful reminders of this. Like when he was around 3 and I took his brother to see family. B. carried a picture of me the entire time. I'm not sure he understood that I was coming back. When I did return, he launched into a long string of babble that, although completely incomprehensible, felt like he was telling me all about what I missed.

Or another time when he had to ride along to bring the 3 of us to the airport. And he excitedly unbuckled his car seat - ready to hop out - only to be told he wasn't coming. I remember handing him a pack of starbursts as if this was somehow a consolation and fighting back tears as we turned our backs and walked away. I couldn't look but I'm pretty sure he had tears too.

He has 2 personal suitcases that he packs with random treasures and puts in the mudroom, the garage, even the back of the car. He may not know what he's missing out on or realize that he wouldn't enjoy what we're doing, but he definitely does know he's missing out.

One of his favorite pastimes is looking through family photo albums. I cringe every time there are pictures from vacations he wasn't part of. He knows. I know he knows. And it isn't fair. It's just not. Yes, there are families who can't afford a vacation. There are kids who have never been anywhere. Not once. Not ever. But for most families, this is a highlight. Not always perfect- not even always easy (yes, I get that vacationing with little kids is an entirely different kind of vacation). But intentionally leaving out part of the family for the sake of the others - that's Autism. The part of Autism that we don't like to talk about - the darkness that we fight against every day. It isn't fair - not to us and especially not to him. But that's Autism. Fair isn't part of the equation.