The other day, I talked about how the on-the-road part of our trip to Charleston went. When we got there, I was exhausted already from the drive. Squeaker had already pooped his pants, resulting in me having to wipe him down and change his clothes the minute we walked in the door, and we were ready to just chill. We went up to our room, and Squeaker wanted to watch TV immediately. Wanting some peace and quiet, we succumbed.
The evening really wasn’t too bad. Everyone showed up, we had dinner, we put the kids to bed, I had a glass (or three) of wine, and we played some games. I was pretty relaxed, but Squeaker wasn’t. I thought he was sleeping and I was sooo wrong. He wound up coming downstairs and, after a huge meltdown for no apparent reason, I took him upstairs to try to put him in bed again.
I won’t get into the sleeping debacle just yet. That’s a whole ‘nother entry. Let’s just say, with all of us sleep deprived, we got up the next morning and I was ready to do NOTHING.
Squeaker looooved the sliding glass door. It led to a screened in porch, and he went in and out of that door a few dozen times. It became troublesome in that there were two little ones to watch out for (Big Guy, who is 15 months old, and a cousin, who is 16.5 months old). Naturally, I tried to keep him away from it as much as possible, but each meltdown got progressively worse. He started in on the self-biting, banging his head on the sliding glass door, throwing his cars, etc. He also made a habit of spitting out great big mouth-fulls of food whenever he was mad and spilling drinks. All of these things were met with stares. And harshness from me because I was exhausted, embarrassed, and uncomfortable in general.
So we did what everyone should do when their children are in full meltdown mode in a strange place. We took him to yet another place he’d never been…downtown Charleston. And because he had so much energy, we tried to get him to walk. Oh. This was not a good idea? Well, you know how when you’re on vacation and you want to do the things that you would normally do when you don’t have a child with Autism? Perhaps we shouldn’t do that. I can’t say this was all Squeaker’s fault. The resulting meltdowns in very public places. Our frustration with him. Looking back, I have to ask myself what the heck I was thinking.
And then at a restaurant where Oreo cookies come with the kid’s meal… He knows he has to eat his food before he can have dessert. It’s always been this way. But with him, we’ve found that we need to be really specific. It’s not a matter of, “Two bites,” or whatever your compromise is. With him, you have to tell him he has to take a bite, chew, and (this is important) swallow. He was in no mood to comply, even with a grilled cheese sandwich. Lots of chewed up pieces of sandwich wound up on the floor. Lots of screaming, lots of head-banging. And each time he spat a piece onto the floor, he had to take two more bites to compensate. Each time, he spat it out. Until he was down to the second half of the sandwich and removed from the restaurant. While waiting for Big Guy to finish up eating, The Manager took Squeaker outside with his mom, brother, etc., and he wound up eating the rest of the sandwich (chewing and swallowing), so they gave him the cookies. Next thing we know, he’s spat cookie out and is having a huge meltdown on the sidewalk.
And it’s bad enough to have people in the restaurant staring at us like we have a two-headed monster, but to have family say something like about our “out of control child” was really irritating to me. Perhaps I’m over-sensitive about things, but it’s really not that easy to control him. And, it’s not he just gets what he wants. That’s the entire reason he kept having meltdowns in the restaurant. My persistence with him having to eat some actual food to earn two Oreo cookies. And once he earned them, what happened? He apparently dropped one on the ground and did was he typically does when something goes wrong; he fell apart. He spit out everything in his mouth and broke what was left of his cookies. In effect, he had NO cookies. Who here thinks he won in that situation? I don’t think anyone did.
There were moments of enjoyment during the trip. Squeaker had some fun on the beach. We took shifts getting into the water. Big Guy was stellar…which led to those lovely comparisons we all love. About how good Big Guy is. Implication: Squeaker is bad. I felt myself simultaneously feeling the resentment toward him while feeling the need, as his mother, to defend him. After all, Squeaker really isn’t bad. He’s a sweet child, he’s smart, and on his good days, he will do anything to please you. We had not put him in the ideal circumstances to shine and it’s unfair to compare him to an easy-to-please 15 month old, especially since he used to be an easy-to-please 15 month old.
The thing is…he’s not going to be good when he’s far from home, being forced to do a bunch of things doesn’t want to do, and surrounded by unfamiliar sights, sounds, and smells. Admittedly, it’s hard, in the moment, to recognize that. We push and he pushes back. Nobody is happy. I cried more than once during this trip because not only was I physically tired, but I was mentally exhausted. And The Manager tells me he doesn’t think Squeaker is internalizing it, but it breaks my heart to hear him say, “I’m a bad boy.” He’s not a bad boy. He has Autism. It’s hard. He does things that he shouldn’t do. The actions are bad. He’s not. But I fear that he will start to feel he is the more people judge him.
We don’t give children with Autism enough credit for recognizing feelings. They may not be able to verbalize an understanding, but I believe they feel what we feel on a much deeper level than the people around us do. We have to be careful what feelings we project around our children. All of our children. If they feel your anger and your resentment more than they feel your love and understanding, eventually they’re going to come to the conclusion that they aren’t good enough. I don’t want that for my child. But until the people around us can understand that he has a neurological disorder and he reacts much more strongly to things as a result, I fear that he will continue to feel their judgement. Maybe even more strongly than I do.
PS: I apologize if this is disjointed at all. I had to do a lot of stopping and starting while writing this.
Originally posted 2012-07-07 16:44:00.