We've just returned from our summer vacation.
We went to the US as a family for the first time in 4 years. We stopped going to the US every single year for a bunch of reasons. One of them was that it was just too hard for us to handle Maya in the total absence of familiarity, the constant running from one place and person to another and the changing of environment every few days as we hit all my old stomping grounds with limited down time. It was tough on Maya, she was constantly overstimulated and swung from intense happiness and excitement to deep defiance. Leo and I also went crazy trying to match our parenting to meet her needs but never quite found the right balance between nurturing her, being firm with her and helping her.
We went to the US as a family for the first time in 4 years. We stopped going to the US every single year for a bunch of reasons. One of them was that it was just too hard for us to handle Maya in the total absence of familiarity, the constant running from one place and person to another and the changing of environment every few days as we hit all my old stomping grounds with limited down time. It was tough on Maya, she was constantly overstimulated and swung from intense happiness and excitement to deep defiance. Leo and I also went crazy trying to match our parenting to meet her needs but never quite found the right balance between nurturing her, being firm with her and helping her.
Based on our last trip to the US which was not fun, we were reluctant to go and opted for other vacation destinations, those closer to home with less traps to fall into. Ones where we could control the environment much more and didn't require so much running around, which always proves challenging for Maya, ones where we didn't have to deal with the airport and worry about Maya running away from us and our raising blood pressure as we tried to deal with the hassles of international travel, keeping an eye on our (ample) hand luggage, trying to keep our child from running away from us and trying to keep her seated for 8 hours on the plane and keeping the flight attendants from bitching at us.
Still, as we set off for the States two weeks ago, I was nervous that we were headed for the lion's den and even though a lot has changed, a small part of me, the-glass-half-empty part was just the tiniest bit afraid that we would repeat what was truly a disappointing and miserable vacation 4 years ago.
It was time though. Four years is a very long time. And we figured a 9 year old is a lot more mature than a 5 year old, even with a side of autism. Maya has matured and is better able to cope with unfamilar situations and we are better able to help her navigate these situations.
Most importantly, Leo and I agreed to do some things differently to try and ensure a better trip for us and also for the people we were visiting. This required us making some changes in how we were going to handle certain situations and facing certain realities but we agreed on making them.
Most importantly, Leo and I agreed to do some things differently to try and ensure a better trip for us and also for the people we were visiting. This required us making some changes in how we were going to handle certain situations and facing certain realities but we agreed on making them.
Change number 1: Accommodation
One thing we've changed is that, with some rare exceptions, we no longer stay at the homes of family and friends but opt instead for hotels. It's good to be able to shut your own door at night. We are a family with specific needs and a child that has specific needs and as much as I would love to not have that hotel bill, it's a lot to ask of friends and family to put up with us for several days. It's no longer just someone camping on the couch but we need rooms and closet space, not to mention meals. Doing all that in front of others puts a whole other level on it, it's hard to relax because you are always worrying that you are infringing too much on people or wrecking their own comfort zones.
In the past staying with others has put us in uncomfortable situations. People are well meaning, but let's face it, it is a lot to have an autistic child around, one who particularly has a fondness for animals and has a hard time doing what's expected of her when her routine and her surroundings are unfamiliar. Staying at other people's houses puts us on edge, because not only are we a family on vacation but we are worried too much about what others are thinking and about the disruption our presence is having on other people's lives. Four years ago while staying with someone I was so stressed out because Maya was finding it tough to meet our host family's expectations that I ended up spending the entire time telling Maya, "don't do this, don't do that" and regularly lost my cool. I ended up yelling at my own child who was just being who she is.
Fun vacation, right?
In a perfect world, family and friends would be completely accepting and staying together would be like one big slumber party, but the reality is, that it's too much of an imposition on us to put up with the stress.
In a perfect world, family and friends would be completely accepting and staying together would be like one big slumber party, but the reality is, that it's too much of an imposition on us to put up with the stress.
Change number 2: Choosing quality over quantity
Another thing we've changed is that we stopped trying to see every person on our list. It's just not possible. Friends and family are spread out all over the country and we cannot possibly make time for every single person I'd like to connect with in the flesh and ensure that our daughter has a vacation which consists of more than just sitting around in different adult living rooms or being shlepped from one restaurant to another. So we just decide what areas of the country we are going to visit and see those for whom our timing and location works.
We also decided that people can come to us. It may sound selfish but we've traveled all the way from Europe, others can make an effort to see us if they really want to. And if they don't, that's perfectly fine with us, we understand that people are living their own busy lives and can't drop everything just because we come to town and that is perfectly OK. Who we see, we see, and who we can't, well, that's too bad, maybe next time and we don't harbor any negatives over it.
Bottom line here, it's about acceptance. We're happy with who we get to see. Period.
We also decided that people can come to us. It may sound selfish but we've traveled all the way from Europe, others can make an effort to see us if they really want to. And if they don't, that's perfectly fine with us, we understand that people are living their own busy lives and can't drop everything just because we come to town and that is perfectly OK. Who we see, we see, and who we can't, well, that's too bad, maybe next time and we don't harbor any negatives over it.
Bottom line here, it's about acceptance. We're happy with who we get to see. Period.
Change number 3: Maya's voice counts
This was a huge change for us.
We prioritized Maya's wants and needs above those we were visiting. She's a 9 year old kid so day upon day of adult conversation in restaurants and shopping trips isn't going to cut it.
What we learned all too often from the past is that doing it makes her miserable, she acts out and then no one has any fun.
She's old enough now to have some say as to what we are going to do on vacation and Leo and I decided that we really needed to factor in her desires as well as our own to determine our schedules. We did end up disappointing a few people by changing plans and shortening visits but I really felt that we had to do what worked best for all of us and so I prioritized the needs of my family above thinking only about what I wanted to do and what other people's expectations of us were. I didn't always manage those expectations in the best way, but hell, I am a work in progress and it leaves me something to improve on the next trip, right?
Change number 4: Get real
I think one the biggest things we have learned over the past four years is that we have a flesh-and-blood daughter who has problems and these problems can be exacerbated in a vacation situation. Instead of painting picture in our heads of the perfect vacation and getting upset when the reality looks different, we better understood that two weeks in another country, with no routine, and overstimulation everywhere you go would mean there would be rough spots.
In all honesty, it would have been unrealistic to think that she could have been tantrum free. Luckily her tantrums are not the same display that they were a few years ago, I'll take the defiant stance, the furiously nodding head and the stomping over laying on the floor, screaming and hitting of herself any day. She also had some anxiety on things, fearing escalators and climbing steps made some outings a bit tricky, like at the IMAX theater where she crawled up the 40 or so stairs on her hands and knees to exit the theater or where she held up about 25 people at the escalator at the National Aquarium in Baltimore.
Still, even with this because we knew it was bound to happen, we took it more in stride, we divided and conquered, we dealt with the situation at hand and moved on happily, instead of losing our cool, making our daughter, ourselves and everyone around us miserable.
Still, even with this because we knew it was bound to happen, we took it more in stride, we divided and conquered, we dealt with the situation at hand and moved on happily, instead of losing our cool, making our daughter, ourselves and everyone around us miserable.
The result was that, thanks to these changes we had a great vacation, with our autistic daughter, on our own terms.
That's progress, right?
Great progress! We also have the problem with a child who spontaneously runs away, and children who don't behave how others expect them to. I would never want to stay with anyone, but even hotels have their limits. We're considering a basement apartment via AirBnB if/when we make the trip.
ReplyDeleteI think the best advice you give here is the focus on Maya, rather than meeting up with as many of your friends and family as possible. I've already decided if/when, that we'll pick a spot, and stay there. Anyone who wants to make it to DC we'd love to see them, otherwise, it will be on the next pilgrimage.
Congratulations on making it work!