Today has been a really tough day for all those living within the 4 walls of the Lost and Tired household. Honestly, I’m just going to cut to the chase because I’m so tired and don’t want to drag this out anymore that I have to.
Gavin is experiencing break trough seizures. These are seizure that occur, even with the medication on board. They seem to be happening more when he’s sleeping. We know this is happening because poor Gavin is having accidents while he sleeps and this is not something that has ever been a problem. The neurologist said that this is likely a result of seizure activity while he’s sleeping and to let them know when this occurs.
He has also developed pretty bad tremors as well. I know that Depakote can cause this, however, Gavin was on Depakote for many years as a treatment for bipolar disorder and never had tremors. We don’t know if this is neurological or a medication side effect, so we need to get him checked out.
Aside for the above, Gavin has been really struggling with self-injury. To be completely honest, struggling is an inaccurate word. Gavin’s self-injury is a choice. I know that many people out there can’t imagine why a child would do that to themselves on purpose. Please understand that this is a willful act meant to manipulate those around him and is not a sensory related issue. This has been proven and well documented. Every time I bring this up, I always get tons of emails telling me that Gavin’s sensory seeking and he would never do this on purpose.
While you’re entitled to your opinion, this is simply not the case. We have seen multiple experts and everyone that has experienced these first hand is in agreement. These meltdowns are a manipulative tool for him.
I’m not being cruel or heartless in my approach to these meltdowns. He’s looking to get a reaction and if I give it to him than he will be getting what he wants. In other words, by reacting and intervening, I would, in a sense, be rewarding his behavior. We simply can’t afford to do that.
Having said that, today we experienced the worst meltdown in recent history. I didn’t record this at first because, honestly, I get tired of recording these. However, Gavin escalated to a point that I felt I needed to document exactly what happened. I need to keep a record because if his injuries are ever called into question, I can provide video proof of what happened. It’s really sad that I have to do this but unfortunately, we have to protect ourselves.
This clip is only about 5 minutes long. The actual meltdown lasted for about 35-40 minutes. This is difficult to watch because Gavin literally beats himself up. He says lots of things meant to get a reaction out of me. It’s not easy to stand there and watch my son do this to himself. Little pieces inside my break, when he’s screaming “Daddy help, make it stop”. He’s in pain, only because he keeps hurting himself. He keeps hurting himself because he’s mad that he’s in trouble and in some weird way, this is him trying to punish me for punishing him. Does that make sense?
I know that sounds far-fetched but many professionals, much smarter than me, have concluded that as at least a partial motive for these actions.
This is a really sh!tty situation to be in because no matter what I do, I’m going to feel like a failure and Gavin is paying a price. This entire thing happened because Gavin was supposed to be reading but instead was playing basketball with Emmett. When I realized that he wasn’t doing what I had told him to do, I sent him upstairs to read and reminded him that it still needed to be done before dinner.
That was all it took to set him off. There was no punishment, I just made him do what he didn’t want to do. That’s it.
At the end of the clip, you’ll see me hand Gavin his Lego creation. This is because I was really having a hard time watching him and he literally beat the crap out of his hands. He needs a way to keep his hands busy in order to keep them safe. Sitting on them was hurting and I couldn’t watch him anymore so I gave him the car to hold instead of him sitting on his hands. In many ways having him do this is much more effective, because he values his creations and will control himself so that he doesn’t break or damage it.
That is a huge indication that he is in control of this behavior. He doesn’t care who he upsets, scares or holds hostage. However, he will stop dead in his tracks so that he doesn’t damage something he cares about……
I’m aware that many people find this unpleasant to watch. The thing is, you only have to watch it. We have to live it, every single day. We don’t have the ability to just click on another page or visit another site. My hope is that some good can come out of this situation. My goal is to help educate people as to what a meltdown can entail. Hopefully, by watching this video, you will gain a better understanding of what many families, like mine, are facing.
Gavin is a good kid and is capable of many amazingly wonderful things. However, he also has some very serious mental health issues to go along with Aspergers. My intention is not to make Gavin look bad. I love Gavin and I do this as a means of helping educate the world that he will someday be living in, God willing. The more people can understand and relate, the more #Autism aware they become.
Hey, Rob. I just have a couple more questions. And as always, my disclaimer of please don't take it the wrong way as I'm just looking to be educated on the things you guys go through.
With Gavin getting worse and worse, not just with the physical medical problems, but mentally too, this crossed my mind. Are you ever really afraid that he'll just snap one day (for lack of a better term)? Are you afraid that he'll turn his aggressions out on his brothers, you, and Lizze and actually become a threat? He's getting older and stronger and whenever I read your updates where Gavin's doing these things, I just get so worried about you guys that he'll become dangerous. And that he'll get to the point where you just can't control him. What happens in cases like that? What happens if he goes too far? How can it be prevented when it seems like he doesn't or can't understand? 🙁
The only way I can relate is when I had watched my grandparents deteriorating in the hospital because their care sucked which led them to spiral downhill before their time. I know Gavin's doctors are top notch though so it's not the same thing, but the spiraling slowly down just brings up all sorts of feelings. I only had to deal with it for a few harsh months, but you guys have to deal with it everyday. I've said it before, but I really admire your strength and how you've stuck by your family. I just worry for all of you, ya know?
Thanks, take care, and keep hanging in there.
Ya know, that's a really good question. I am concerned about reaching a point where he snaps. That's actually one of the reasons why I try so desperately to figure out the motives behind what he does.
Ironically, when he was Elliott's age, and long before I had this blog, he was extremely dangerous and we were very, very close to in patient care. We would wake up in the middle of the night and Gavin would be watching us sleep. He was hearing voices then but we didn't know yet.
We actually had to lock ourselves in our room at night and get rid of anything in the house that could be used as a weapon. When Elliott was born we had to lock him in our room as well. After Emmett was born, we had all four of us, locked in our bedroom, every night. Elliott on his toddler bed and Lizze, Emmett and myself in our bed.
Lizze and I have been talking about what we are going to do for this summer. We pretty much don't have any answers. However, I do believe we are going to make a preemptive call to CPS and the police and make sure they have any documentation needed in the event someone calls them during one of his meltdowns.
Thank you so much for your concern. I really appreciate it. 🙂
That's pretty frightening… o.0 I really hope it doesn't come to that again. You're welcome. 🙂
Thanks for posting this… it's nice to know we are not alone. My daughter is going to be 9 this month. She has these meltdowns, she however does attack me and her siblings, not her self. Biting, scratching, punching, kicking, also feces smearing. Chloe also has epilepsy among other things as a result of her being born with CMV (Deaf, has Microcephaly, Brain Damage, Cerebral Palsy, Autism, Epilepsy and Non-24-Hour Sleep-Wake syndrome). All of these things take a back seat to the Mental Health issues, living it everyday(and night) is something that I truly can not even begin to put into words,
We are going camping for vacation, for us its manageable and if it doesn't work we can leave. I'll be following you and your family's journey online. Thanks again for sharing.
I support you 100%. I work with many children with ASD and I agree with you completely in your assumption of your son's understanding of the situation. The worst mistake we make is to accidentally reinforce a behavior by attending to it. It is the hardest thing in the world to watch a child in full-meltdown mode. But basic ABA principles tell us that to attend during these moments will reinforce the melt-down behavior. Good luck to you. You are strong and Gavin is lucky to have you.
hey man, I really feel for you.
My son also beats himself, but thankfully, so far, he just slap his own face.
I am having some success though, but talking to him. I explain to him that I am also upset with (I give him the reason why he is misbehaving) and I explain to him how in life he won't have his way every time, and how he has to learn to cope with it…
A few times, he didn't even listened. But after some time, he started paying attention.
Sometimes, I gave him examples on how I could be upset, but I chose not to, so I could improve my situation
Other times, I explain how misbehaving brings him grief, not rewards, and how when he behaves, he gets good things, and everyone is happier.
Often enough I get him to think about it, and it curbs the tantrum down.
I pray you will be able to help him!