Monday, March 2, 2015

Social Caterpillar

I can't speak for all parents of children with a disability, but raising a child who struggles comes with the highest of highs and the lowest of lows. When Anderson meets a milestone or accomplishes something, the pride that I feel is indescribable. As in here, where he is starting to swim.
Someone asked me if I cried, and the truth is that I didn't--but my face literally hurt from smiling.  I'm telling you--he had a legitimate phobia of water, one that left him shaking--literally shaking--with fear in the pool. And that was with me holding him. To go from that, to this...well, it's miraculous. Look at his face. He's so proud. We high-fived and hugged and celebrated for two days.

However, for each exhilarating success, there's an equally disheartening obstacle to overcome.  And right now, that's Anderson's speech and communication.

Anderson is very verbal. If you know him at all, you know what I mean.  The boy talks from the moment he wakes up until the minute he falls asleep at night.  He talks...but it often makes no sense.  That's not to say that he is just saying words...he is formulating sentences that have subjects and predicates. It's just that they don't go together to form a coherent thought. It could sound something like "When I turn 38 (he's obsessed with ages, and someone around here but I don't know who will be 38 on their next birthday) I am going to UK and the blue doors and trees and I drive a car and walk." That was kind of a poor example, but you get the idea.  There are words thrown in there that don't go, and of course the whole going to college at 38 thing is unique. 

Here's the catch. Anderson WANTS to be part of other people's conversations. He absolutely craves being a part of adult discussions. However, he has no clue how to go about it, mostly because he's a small details guy in a big picture world.  You see, he doesn't understand that when we talk, all of the words coming out of our mouths form sentences that are small parts of a bigger conversation that focuses on one topic. He's not listening to the meaning behind what is being said; he just knows that words are coming out, and that sometimes people who are talking laugh. And he LOVES to make you laugh. So...he tries to be a part of the conversation. This can look two ways. He mumbles non-words that increase in volume until all parties are looking at him, OR he says random things, like described above. Things that make no sense in general, much less as a part of the conversation at hand.

This is particularly difficult in public. Take, for instance, the elevator at Macy's.  If someone gets on with us and starts a conversation with me, it's a total crap-shoot what will come out of his mouth.  When it's nonsense, they kind of peer at him with a half-smile. He, in turn, takes this as his cue to kick it up a notch because in his mind, he's become part of the conversation.  He continues on, and the unwitting participant starts to get that squinty-eyed look that only pure confusion can elicit. At this point I usually jump in and say something like "oh, he just likes to talk" or something like that, and they look at me gratefully as if to say "thank you because I certainly wasn't following that"  and smile and we all get off as soon as the doors open and that's the end of it. Except it happens over and over.

Now...I know that in the grand scheme of life, this isn't the worst problem to have. It's not like he's getting overly frustrated to the point of  melting down, and it's certainly not hurting the other people involved in the "conversations". But, it's hard to watch him want something so bad and try for something and not have any clue how to make it happen. He knows that his conversations don't last but he doesn't understand why. His inability to "get it" frustrates him and others, and it leads to an even bigger problem--trouble at school.  Since he doesn't understand that the words we say relate to make stories or conversations, he doesn't understand that when his teachers are reading or talking, he should be listening to all of it and putting it together to formulate a bigger thought or concept. Again--small details guy, big picture world. Thus, he's having difficulty with comprehension and writing.  We just amended his IEP so that he's getting a little bit of extra help in these areas, and I'm grateful for all of my training/experience as a teacher so that I can stay on top of it, but it's going to be a challenge. One that I have no idea how to overcome. I mean, think about it. How do you explain the art of conversation to someone? Try it. It ain't easy.

So far, I've tried talking to him BEFORE he has conversations with people, trying to prep him for staying on a topic. I gave that a shot last week before his swim lesson. In swim lessons, he's notorious for giving the teacher an earful of...nothing. He talks the entire time about everything under the sun not related to swimming. I figured, hey, swimming. That's a topic in and of itself. So, on our way, I suggested that maybe when he talked to the teacher, he focus on talking about swimming. We chatted about it for a few minutes and I even gave him some leads and I thought maybe, just maybe...and then, as soon as he had been in the water for five minutes, I heard him reciting the days of the week. So yeah. That didn't work.

The other unfortunate communication issue is that he doesn't really get the idea that some conversational topics aren't for the general public.  I will spare you the details of some of our more recent conversations that have taken place in a variety of public bathrooms, but let me just assure you that a) they are highly embarrassing and b) the more embarrassing, the higher the volume of his voice.  He's not saying bad words or the typical "potty talk" that five-year-olds enjoy; he's stating what he sees as fact and doesn't see the need for modesty or privacy. Explaining that is equally difficult.

So, that's where we are at.  I predict that this gets worse before it gets better. In the meantime, we just grin and bear it and know that it's just one of those things, one more obstacle to overcome. We'll get there.