We had a problem tonight with Gavin. Elliott got hurt again tonight as a direct result of Gavin’s actions. Whether he meant to hurt Elliott or not (and I don’t know that he did) there are consequences for his actions. As usual I recorded it as a means of simply documenting what actually happened should this ever be called into question. I took a more hard line approach with this one today because I have just had it with this behavior. No part of me believes anymore that he CAN’T control this. In my opinion this whole thing was a willful act that he could have stopped at any point but simply didn’t. This meltdown is because he was told he was going to have oatmeal instead of a chicken patty for dinner not because Elliott was hurt. I want to stress that the “oatmeal” itself has NOTHING to do with this. It’s the fact that he is being held accountable for his actions, pure and simple.
I take a more “fed up and aggressive” approach to this meltdown. The level of self-injury is the worst we have seen so far. I want to point something out as well, when Gavin started to meltdown we tried to get him upstairs but it was to late. I remind him several times that he has the right to scream but our rule is that it must be done into his pillow, this helps to mitigate the impact it has on the other boys. I don’t think this is unreasonable. He choose to throw his fit in the kitchen so I told him that since he choose to do this downstairs instead of upstairs like he’s supposed to he gave up his right to scream. Whether or not that’s the right things to say, I don’t know but it didn’t work anyway. I also let him know that I’m not going to stop him from hitting himself and that he will NOT be going to Akron Children’s Hospital as a result of this. I tried to encourage him to breathe and get himself under control. He was screaming so loud that I was surprised no one called the police. I told him that if someone calls the police and they show up it won’t go well for him. At one point I actually got kicked, although I don’t think it was on purpose.
Look, I’m not perfect, in fact I’m far from it. I say and do the wrong things but I will say that most of the time I’m feeling my way through the dark. With Gavin at this point, I’m at the end of my rope. Earlier today he “lost” another tooth. I don’t know what we are supposed to do and NO ONE has any answers. All I can say is that I do the very best I can with what I have left to give. I’m trying a different approach in this video and I’m sure I come off and uncaring but I assure you that’s not the case. I’m trying every approach I can think of to help these situations and the end result is the same every, single time. Gavin meltsdown and Gavin self-injures. The only way to avoid these meltdowns is to NOT hold him accountable. As tempting as that is, we can’t do that.
Also I’m not sure what went wrong with this video but the color is way off and it’s like it was shot in the dark but it wasn’t. Literally, it hard to watch but I think you will get the point. I hope our experience can be beneficial to someone else out there.
[youtube]http://www.youtube.com/watch?v=npFE_4BhovQ[/youtube]
I agree with the stretchy sensation..I'd never really thought about it but the way I sit when most comfortable has my hips with pretty significant stretch on them..I tend to almost fold up on myself..which is a degree of postural 'fixing' too. (I've got low tone along with the hypermobility)
Ok, I'm going to elaborate a little more on my comment there. I haven't seen you mention connective tissue/collagen in connection to Gavin in this blog. I'm well aware that it may be something that is there, but not important to understanding Gavin. Or I could be misinterpreting what I'm seeing. But it may help, so I'll write this anyway.
I'm focusing on collagen because I know a little bit about it. I seem to have something called benign joint hypermobility syndrome, which experts believe means that my collagen is built differently than most. It leads to a number of symptoms in me that are primarily curiosities, not negatives. However, collagen abnormalities can be connected to much more serious issues. For background, I'm no expert, but I have read the relevant medical journal articles I have access to via my university, as well as looked through the internet for relevant info.
The videos you've posted of Gavin make me think that he's also hypermobile. He is incredibly bendy all over, and you said that when his ankle was pulled on, it pulled far enough to stretch his skin. I do those too (to a lesser extent), and it's related to collagen formation. Good muscle tone helps prevent this from being as much of a problem (joint problems and clumsiness), but it doesn't get rid of the inherent joint looseness.
I'd like to note people tend to think that the stretchy things I can do hurt. Ok, so they're kind of right… but it hurts in a nice way, similar to the way that hard exercise can feel nice for some people. So when your son pulls his fingers to his wrist, or his foot to his armpit, he's probably doing it because it feels good. Painful, but good. At least, that's why I do similar things.
Dunno if you'd come across these ideas before, but if you haven't, I figured I should elaborate.
On a completely unrelated note, you're an excellent writer.
Well thank you for all of that. You shared some information that may be a piece we have been missing. Gavin has low muscle tone as well. I\’m going to bring this up with the Cleveland Clinic on the 9th. Thank you very much for posting that. It\’s not often that I hear something that hasn\’t already been looked at. Thank you again.
I second @furthurxfuture. You do an amazing job keeping calm in a heartbreaking situation.
I do want to point out one thing in this video. Around 10:40 Gavin seems to hurt his right hand enough to be surprised by it. He spends the rest of the video focusing more on that hand, touching it and stretching it. After that moment, he completely stops his violent flailing and hitting. He finally manages to calm down.
Is there any chance that he was actively seeking that moment? Not the pain itself, which he doesn't seem to like, but the calm that came after it? If so, maybe there's another way to achieve that calm, maybe before a meltdown or as a daily thing? Stretching, jumping, spinning?
Another thing that I noticed is that he seems hypermobile.. that is, his joints look very bendy. As someone who is hypermobile myself, I know that I find stretching to be quite pleasant, in the same way hard exercise is. When I was younger I'd do the finger bending, leg bending stuff too. Not as extensively as Gavin, but I may understand the sensation. I found it calming. I mention this because I think it could help get whatever sensation Gavin's trying to get in his meltdowns. One caviat is that stretching should be done carefully.
Take everything I said with a giant pinch of salt. These are all shots in the dark, as I don't know Gavin, and I don't know how much energy it would take to consider them. My hope is that they are intelligent shots in the dark that may provide new helpful ideas, without adding extra stress. If I am not making sense, please ignore this post.
Once again, you are doing an amazing job. That's a statement that needs no pinch of salt.
wow. I was feeling like kind of a failure there. Thanks a lot. Something to keep in mind is that when Gavin said he'd never be a good kid that was more an attempt to manipulate us into showing sympathy instead of holding him accountable. It's hard to here him say things like that though. Cause what if it's NOT part of the show? What if he does feel that way? In our experience with him these meltdowns are meant to break us and difficult as it is to push forward we do so in the hopes of giving him a brighter future. Thank you and your comment made my day 🙂
I'm not an expert or even a parent, but I admire how you handled this. IMHO the bowl of oatmeal is a really good idea. But it did break my heart when he started yelling that he'd never be a good kid. 🙁 I understand the self-injury too, and it's really hard to talk someone down from that whether they are Autistic or not. Well done!!
As always, I am thinking of you guys and wish I could offer some valuable advice. Unfortunately, I've got nothing. Somedays it is just so hard…