Wednesday, April 21, 2010

Baltimore

Perhaps I was too ambitious. I’m writing this from Baltimore, where we’ve been on a mini-family vacation for the past few days. Except it hasn’t been much of a vacation. Which, in some ways, is to be expected when you have two young kids. You don’t take vacations with them to actually relax. But we’ve kicked it up a notch here beyond tiring and moved over to downright stressful.


I shouldn’t overstate this. We have had some good times. Anna and I went to the aquarium today. The kids really enjoyed the children’s room in particular over at the science center the other day. And Ethan is almost always great in the car, even for long car rides. We’ve seen some new things and had some fabulous weather, and in particular have enjoyed walking by the harbor.


But Ethan is out of his element and has strayed way off once again. I thought maybe we’d be okay because of our trip to the water park a few months ago. I’m not sure what the difference is…when it comes to the autism spectrum, second-guessing and over-analyzing seems to come with the territory. I keep wondering: what has set him off? Was it that it was a three rather than one-night trip? That it didn’t involve water slides? That I tried to stop him from playing with doors and lights and fans right off the bat and stressed him out? I just don’t know.

The trip down was relatively uneventful and we got here on Sunday evening. I had tried to talk to Ethan about where we were going in advance but sometimes I just don’t know how much he understands, especially when we’re talking about going to a place he hasn’t been before. There’s a lot of talk about preparing kids with ASD for unfamiliar events, talking it up and showing pictures, etc., but I felt as if there was only so much I could do. So we got here in the hotel room and right away, the only way I can describe it is like this: when Ethan is nervous and in unfamiliar surroundings, he doesn’t immediately cry, show fear, or exhibit typical signs of stress -- instead he shoots off this laser beam that looks for light switches, doors, and fans, and he gets what I can only define as “stuck.” And so within a few minutes of us getting there, it was close and open doors, then run to the ceiling fan switch, then lights, then flush the toilet. Again and again and again. And he will act perfectly content unless you try to deter him from one of these activities. Then suddenly his usual level of tolerance disappears, and instead of crying for maybe 5 seconds and moving on to something else if he was at home, he’s on the floor wailing for minutes, and as soon as I turn my attention away, he’s back to his routine.


We haven’t quite figured out what to do in these situations. This is where the conflict between the ABA and Floor Time schools of thought loom large, and where I always seem to make an effort to find a middle ground yet sometimes fail spectacularly. ABA would say at the very most to let him play for a moment then stop him, and offer him some sort of reward or reinforcement for stopping. Floor Time would say to go with it, join in with the child in the activity, because to them what they are doing is purposeful and meaningful, and the only way to really motivate them to tone down that behavior is to feel accepted and loved. I’m not completely accurate here, but that’s the gist of it. I often end up vacillating…I’ll get fed up and attempt to redirect him over and over, thinking he’ll give up, but he never does. Then I’ll go the other way and do something silly like make up a song about the ceiling fan, and I’ll see that he enjoys it. I see the spark go off in his eyes that says, “Hey! Mom is appreciating something that’s important to me,” and he’ll come back to me and try to get me to sing it again. Floor Time would say this is exactly what we want to happen, because by joining in I’ve encouraged him to engage with a motivation that comes from the heart, and I can’t help but think -- yes, I understand that, but there are times when he needs to know and listen when I tell him he has to stop. He has to at some point gain some measure of self-control. But then again, I think, he’s only 2, which is challenging for any child, and so the vacillating goes on and on.


I think I could handle it if we were just talking about the hotel room. But since Ethan’s been going through this rough phase over the past month or so some of his fixations have been carrying over to other places. The difference is, when it’s semi-familiar territory, we can still work with him and get it under control. A strange city and strange hotel, not so much.

What I believe happens is this: the more strange the situation, the harder Ethan searches for those familiar special things that he likes and that bring him comfort. I’ve heard it described that these little quirks aren’t that much different than the way we bite our fingernails or overeat when we’re stressed, or gnaw away at the end of a pencil. So he zones in on these things, and once he gets hold of them, he just can’t let go.


The elevators here are another perfect example. At home Ethan will ask for elevators and when I tell him, “No, not today,” I might get a little squawk and then it’s done. Here when Ethan saw the elevators he started calling for them. And then when we rode on it a few times he was gloriously happy…but as soon as the ride was over he began sobbing. And once we got outside, he’d stop crying, but only so he could look for storm drains. But if I told him he couldn’t throw anything into the drains (another obsession), he’d dissolve again into a tantrum, which would quickly subside if he found something else he wanted to obsess about, like opening a door. The entire time we’ve been here, it’s been all about his obsessions, and if he doesn’t see any options available, he’ll sit in his stroller while we’re trying to look at the sites and say, “Done. Done. All done!” and whine.


Same for restaurants. Normally we can eat in a sit-down restaurant as long as we don’t have to wait too long and I have some snacks or other little distractions. When we stayed at the water park this worked out fine. Suddenly, we haven’t even been able to eat at Panera. His tolerance level has just completely disappeared. So we’ll be sitting there and he decides he’s done because he got stressed that the macaroni and cheese was too hot and there’s no distracting him, no deterring him. He just starts sobbing and wants to leave.


So, I am tired. So is Dan. There are a million routes I could go with this that would all take me on a not-so savory journey into self-pity and fear. The biggest one that wants to rear its head is: Please, tell me it won’t always be this way. And beyond that, I feel sad for my little boy when he’s like this. I feel sad that he’s so stressed and not enjoying himself and that I can’t seem to reach him.


I often think about all of the studies on autism and how so many of them talk about the complexities of the brain and all of the interrelated activities going on, about the different connections being made or not made and how it goes back to each person’s inner wiring at the core. For some reason this brings me a kind of comfort because I realize I’m not failing when I can’t come up with answers and solutions immediately. It’s not me. It’s so far beyond me. And to that end….I may not know, the researchers and doctors and scientists may not completely understand, but we have a God beyond comprehension who holds the answers to everything we can’t comprehend. Ethan’s creator isn’t puzzled by him. I can ask for that wisdom. If I can let go of the emotion, the frustration, the fear…I can trust, listen with different eyes and remember to see my boy with my heart. God, help me.

2 comments:

Amy said...

I just want to say that it DOES get better as they get older. The more practice they have with unfamiliar routines,the more practice they , and you, have at finding coping strategies. Ryan loves to travel now, but at Ethan's age he was very stressed when he could not predict. To Ethan traveling probably means the water park, that has been his experience and that probably what his mind expected. The first time we went somewhere was always bad, but when we went back the second time Ryan was fine because it was no longer unfamiliar.

Ryan is in a bit of a phase now because he knows school is ending and thigns will be different. He still reverts back to his obsessions, but it is much easier to handle now. As he has aged light switches and doors aren't as big of obsessions anynmore. However, it has advanced. Dave woke up this morning to Ryan taking off the faceplates on the light switches and outlets!! YIKES!

Deb said...

Thanks Amy for the encouragement. I am reading this up at 3:30am, thinking of Ethan over at the grandparents' house and praying they keep an eye on him and don't let him sneak outside, and feeling kind of sad that it was so hard to get him away from playing with doors when we were there. Unfortunately he has been there numbers of times now and this is still an issue right now. Sigh...but thanks for giving me a glimpse from the future.