Dayna and I are hanging out with just each other for a few days. Deb has taken Kiley and Sean off to Florida to visit their grandparents. This is one of those situations that can be unique to a family with a child with autism, or any child with special needs. As I sit here alone, Dayna playing up in her room, it seemed like a great time to tell you all about it.
First of all, let’s look at travel overall with Dayna. Dayna has always been hit and miss on how she handled travel. For the most part, we can travel by car within a three to four hour radius without any major problems. Keep in mind, when I say without any major problems, that comes with a lot of planning and preparation. Time of day, making sure everything is in place so we can have a quick departure, setting things just right in the car and making sure there is a Burger King close by…..and open….with chicken nuggets being served are all things we cover. Yep, if we need to leave in the morning I need to make sure to buy BK nuggets the night before and have them ready. Try to drive without them, Dayna will not be happy, and you’ll know it! Funny thing, try and get her to eat BK nuggets any other time other than a road trip, and it isn’t happening, that’s just her thing. Point is, even in a road trip there is a lot of careful planning, and the nuggets are just a small part. But at least in the car if something is not right, if something unexpected happens, we are in the car and we will have to deal with it as a family without anyone else involved. Why do we limit the travel to a few hours? Because even as a family if something happens that turns the trip into a bad experience, extending that experience is hard on everyone. Trust me, we have the stories! We have learned to accept that each trip will start with 30 minutes of Dayna screaming ‘Go Home!’ over and over, because we know that it will eventually end. But when something goes bad that gets Dayna screaming mid trip, it’s good to know that there is a limit to how long it will last. It’s go to know we never have more than a couple of hours to go.
So that brings us to air travel. Something we have never tried with Dayna. I’ve had jobs in the past that would have me on planes often. I’ve sat in the airport for hours on a last minute delay, sat in the plane on a ground hold for two hours due to storms somewhere and waited after landing for luggage that seemed like it would never come. One of the hardest things for Dayna to understand is why things are not the way she wants them. When she wants to get up, go somewhere, or leave….she can’t comprehend why it may not be able to happen when she wants. That leads to outbursts. And when those outbursts happen in public, it can be stressful for the entire family. Now I know, some people will say “Eh, don’t worry about what other people think….” or “Just ignore it, she will be fine…”. That’s easy to say, when you don’t have to worry about it 24x7x365xLife. We may have just dealt with a major outburst a couple of days before getting her ready for school, or because something happened to her iPad. No matter what anyone says, it’s stressful when it happens at home, and it’s even more when it happens in public. Move that to the inside of a plane, where you have nowhere to go, and it would be multiplied by 10. Knowing what has happened on road trips, outbursts that have come completely unexpectedly, and thinking about that happening in the cramped quarters of an airliner candidly makes me shiver. Here’s another one….a couple of month’s ago Dayna and I went to the doctor’s office. While waiting for the elevator, there was couple with a crying baby near us. Dayna was screaming at the baby “HAPPY…..HAPPY!” non-stop. That’s what she does, and since Sean was born she has been screaming “HAPPY!” whenever she hears crying. Other than to literally grab her and hold my hand over her mouth, I had no option but to just let it happen. I could not get her to stop no matter how many times I asked. The baby’s crying, Dayna’s yelling, and I’m pleading with her and desperately waiting for the elevator to arrive. Ever been on a plane with a screaming baby? It’s not unusual or ideal, is it? Ever wonder how it could get worse? Pretend we weren’t waiting for an elevator a couple of months ago but sitting next to you on a three hour flight…..and shiver as well. If you’re wondering if drugs would help, read back in my previous entries for what it takes just to get Dayna to sleep.
Bathroom breaks on a plane…shiver again. Dayna tends to not shut the door when she uses the bathroom. It’s also not unusual for her to come strolling out of the bathroom with her pants still down. We’re used to it here at home, and we constantly work with her to learn proper etiquette. But on a plane, it would be quite embarrassing. And if she has to go ‘number 2’, its takes support and help from Deb or I in the bathroom with her. Depending on how bad the situation is, it may need both of us, followed by a bath. Now picture a typical airline bathroom, sometimes up in the front of the plane. How would we ever deal with that happening mid-flight? There’s only so much you can do in a 3’x3’ space with a six inch diameter sink. I won’t even mention the problem that would occur if that needed to happen while the dreaded Fasten Seat Belt sign was on.
Finally, we have no idea how Dayna would feel. Would she be nervous or scared? Would she feel sick or have earaches? We wouldn’t really know, because she wouldn’t know how to tell us. When she is sick she will say “Do you feel better?”. We then have to try and get her to point to what hurts. Either way, we would not be able to explain to her what was happening. Even if all of the other things could be solved I don’t know if I would feel comfortable putting her through any of that.
So that leaves us with ‘regional’ car travel, and breaking up the family when air travel is needed. And this weekend’s trip has also left me with a lot of time and two more blog entries to write:
- The challenges of taking care of Dayna when I am by myself, and
- How our travel issues will effect where we live in the future.
I’ll be writing those both over the next couple of days!