I’m really trying……..

 

I’m trying so hard to be patient but it’s getting more and more difficult… Gavin is REALLY struggling and God forgive my, he’s going to push me over the edge. I’m really starting to feel the preasure and I don’t know how much more I can take….

Tonight Gavin had oatmeal for dinner because eariler he was causing problems with Elliott. The only rule he has with eating the oatmeal is he has to eat politely and safely. Tonight he didn’t do that. He was shoving the oatmeal in his mouth to the point where he gags. We corrected him once and the following time he was told he would have oatmeal again in the morning. He didn’t like that so the meltdown ensued….. We have to hold him accountable for his actions and its not oatmeal is going to kill him… The meltdowns are getting worse……and I am getting worn out. Not all kids with Autism are the same……

[youtube]http://www.youtube.com/watch?v=wwIBlnBj-2Y[/youtube]

 

Edit: Please read this follow up for more information/explanation.

8 comments

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    • thecoach on April 3, 2013 at 7:42 pm
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    @stefanie Not to be argumentative, but video taping these sorts of meltdowns allow parents and therapists to see what the meltdown “looks like”.  Without this, it would have to be described.  Sometimes we miss a lot and the video allows us to objectively.

  1. I can see both sides to this story, but if you go back and read Robs posts on this site, its a total real life, honest post of what life with autism is like. Without being able to document what the meltdowns are really like, not just saying that they are bad, gives everyone the true picture of what their family life is like.I'm not here taking sides, and i don't think that anyone who comes here on a regular basis thinks that Rob would exploit his family.If you weren't ever around somebody that is autistic, you would never have a clue as to what a "meltdown" really is………this is the reality of what happens in the real world….not the sugar coated variety that we all get to read about in text books. When i see this kind of stuff, it just makes me realize just how hard the job of a special needs parent really is……I have one child the has asbergers and is actually higher functioning for which i'm very greatful….hes a load at times but my wife ,who i couldn't do this without, and i don't have nearly the stress that this family does and i so admire the hard work and patience these guys have.Stefanie, its great that you posted your opinion and i sure do hope we hear more from you because i think you can help give some good perspective on this and many of the other topics that are discussed here, so please keep on sharing your thoughts.

  2. I didn't say anything on the last one, because I know you have your hands full, but since stephanie brought it up, I will say a bit. I kind of agree about the taping of the meltdowns.

    I understand that you're doing it for awareness. And I can understand where taping would be helpful, for doctors, to help family and friends understand, etc. But I do think that putting it online is a whole other thing.

    If he were too low functioning to, say, get online when he reaches his teen years, and find the videos… or if he were too low functioning to care what others think of him, it would be one thing. But since he probably does or will care what others think, and he may find these in the future, it could be problematic.

    That's not my main concern though. It wasn't as evident in this one, but in the last video you posted it seemed to me like the video-taping, and the questioning/comments you were doing (e.g. "are you done yet?" and "this doesn't do anything for me") might have been making it harder for him to get himself under control.

    I know when I'm really upset and/or having a meltdown any outside interference can actually make things that much worse. I understand that the "pretzel" reminders are absolutely necessary, and one word comments like that can be helpful. But the extra stress of trying to answer questions, or having to worry about a camera on me (i.e. strangers, i.e. social issues), or hearing that what I'm doing is making things harder on someone else, is more likely than not to push me over the edge again if I'm close to finding my way back down.

    I don't want to seem critical, I can't imagine the stress you guys are under, just wanted to give another perspective in case these things weren't considered.

    1. You make an excellant point but let me explain. Gavin has a very long history of manipulation. He can, has and will throw a meltdown on purpose. There is more at work here the just the Autism. Over the years we have had to learn how to tell the difference. It doesn't translate well to video but in real life it's more clear. We have all the experts telling us they don't know what to do. I talking top notch people (Cleveland Clinic and Akron Children's Hospital). All we know is that many times Gavin has complete control over these meltdowns and he does it for the purpose of trying to manipulate the situation. Often times when I tell him "it's not doing anything for me" or "are you done" he will shut it off. It's literally like he just flips a switch.

      If you read the archives of posts you will find examples of times that this has been proven. I know it seems cruel and trust me when I tell you it feels even worse but it's what's actually happening. Just as an example, Gavin can meltdown for hours sometimes, it just esculates no matter what we do. We have honestly tried everything and nothing works. So out of desperation and shear exhaustion one time I told him that if he stopped right now I would get him ice cream. Guess what he shut it off. It was like it never happened. I have never seen anything like it before. The experts tell us that if he was truly out of control to that extent that he wouldn't even have heard us. He would just be to overwhelmed and over stimulated to be able to listen. The fact that he can just shut it off on cue is actually pretty scary…

      I'm glad you brought this up because this hasn't been discussed in awhile and any new readers won't understand why I handle these the way I do. Does that make sense?

      1. Yeah that makes sense. I imagine it's gotta be really hard to discern the difference between the different issues he's got at work. It's hard enough for parents and caretakers of kids to just tell "meltdown" from "tantrum" in typical aspie kids.

        I asked on your twitter, but it seems like you're around here more, have you guys checked into getting respite care from the state? Unless I'm mistaken you can get access to trained care-workers to watch the kids for a few hours/mo (depends on finances I think) to give you a break. I think Social Services handle it but could find more info if you haven't checked into it before.

        I'd offer to come help out once in a while or something, as I'm in Ohio, but unfortunately I'm in the SW corner, way too far to come w/gas prices.

  3. we do misunderstand the way nt think i was thinking wow what if someone video tape me haveing a fit .well it happen a while ago when i was in a docutrmy on haveing autism being a girl is rare in autism an ld .it hard for me to still realte to other an how theyt think an feel .like sometimes it just hard haveing a disibilty ,im an artist an do gust speaking sometimes about having autism .hope that make sence ,my mom say it was hard when i was litte

  4. as a person with autism video taping your child having a melts down is mean an ridilous .how would you feel if someone video tape you haveing a fit an uploading it for the world to see .not cool .FYI feel bad for him

    1. Thank you for sharing your opinion. You are however, misunderstanding the purpose of doing this. I do this to raise awareness. People have the no idea what Autism is and how it affects the family. When people view these videos they have a better understanding of what families like mine are going through and the struggles kids with Autism face. I'm sorry you were personally offended. Painting my son in a bad light is not what this is about. It's about honestly and openly sharing our experience both good and bad. If you were to take the time to read more then just this post you would know that.

      Again thank you for sharing your opinion and I look forward to reading your comments in the future. 🙂

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