Important Clarification…(A very honest post)

There were some concerns raised about the last video I posted of Gavin having a meltdown. Reading and responding to these comments made me realize that you may need some background information if your new to my blog…. So here it goes.

I started to record and post these videos in order to make people aware of the grim reality that we are living in every single day. I wasn’t sure about doing this at first but I stand behind my decision to post them and here’s why. Our lives are indescribably difficult. While I know we aren’t the only family out there with more then one Autistic child, it’s very rare according to all of our doctors. Especially with no genetic abnormalities. Then you factor in ALL the other mental health issues at work with Gavin and that makes it much more complicated. I know what it feels like to be completely isolated. My wife and I have lost everything we used to be before all of this. To be completely honest (and I can’t believe I’m even going to admit this), there are days I wish I wasn’t alive. I don’t want anyone out there to feel isolated. I want them to know they aren’t alone.

The main reason I post the videos is because I’m desperately hoping someone, somewhere see’s Gavin and recognizes something. Maybe they can point us in a direction we haven’t already been. We desperately love our kids and have been doing this for a very, very long time without any real support. Our parents will take the kids sometimes but we need so much more then that. There are HUGE funding and health issues as well that weigh very heavy on me. Our kids doctors tell us all the time that they don’t know how we have survived this long. I always respond with “what other choice do we have”. We aren’t going to survive this without some type of reprieve. I’m trying to hold my family together and I feel like I”m loosing my grip. I need answers. I need to know what I’m supposed to do because no one can tell us. We have experts at the Cleveland clinic and Akron Children’s hospital and these hospitals are among of the very best in the country. When they can’t give us answers what are we supposed to do? I fear and I mean FEAR the future because I don’t know if we even have one anymore.

I also want to address the concerns about the contents of the video. I fail to remember that many of you probably haven’t read back over 1,000 posts to get the whole history (can’t say that I blame you either). Let me explain some things about Gavin. Gavin is a beautiful person. He can be sweet and kind. However, Gavin has a dark side. When I say he breaks the mold I truly mean that. Gavin is not your typical Aspergers child. He is very profoundly mentally disturbed. Gavin has been diagnosed with schizoaffective disorder along with half a dozen other mental health issues.. This has been heartbreaking for me as a parent because my son sees and hears things that aren’t there. The medications that are required to quiet the the voices (anti-psychotics) have caused a movement disorder called Paroxysmal Choreoathetosis and he ended up in the Cleveland Clinic with delirium this past summer. They said his life was in danger. They also say his brain is “primed” now to react this way to the medications he desperately needs to stabilize him. We are still awaiting the results of the CFS study they did in January meant to shine some light on this problem. There has also been talk of Gavin showing signs of becoming a sociopath. Gavin shows very little affect or true emotion. Everything is robotic and honestly, at times even creepy. For many years we were told to lock ourselves and the other two boys in our room at night because there was concern about our safety. We used to wake up in the middle of the night and Gavin would be standing in our room just watching us sleep. It was like some goddamn horror movie. I would roll over and open my eyes and he would just be standing there. Freaked me the f&ck out. He used to draw pictures of our house on fire with Lizze and I burning alive. Gavin was about 5 or 6 years old at the time. When he was finally put on anti-psychotics those things sort of just went away. Do you know what that feels like to fear your child because I do.  Right now Gavin is actually doing pretty well considering.  When he gets upset he self-injures. I know that’s not a good thing but at least he’s not lashing out at others like he used to. However, we are always aware of what’s going on so we can immediately intervene if necessary. I say all of this but at the same time don’t want Gavin perceived as a monster because he isn’t. He’s troubled.. Gavin is a mystery wrapped inside an enigma.

For years Gavin has had meltdowns like those shown in the videos but much, much worse. These would happen 5 or 6 times a day…every…single…day. They slowed down for the first time in a long time about 6 months ago but are now making a come back. These meltdowns are so bad that he has actually cracked the walls on the first floor underneath his bedroom. My sister in-law moved in a few doors down from us about a  year or so ago. She was aware of the meltdowns but was shocked when she actually witnessed them in person for the first time (Trish please feel free to chime in here). Gavin’s longtime therapist has said many times to many people that “if I hadn’t seen it myself I would never believe what he is capable of”. I know this is a lot to take in but I honestly couldn’t make this stuff up.

The most frustrating part of these meltdowns is that it appears he is in complete control at least most of the time. I know it doesn’t look like that in the video. You see what we saw for many years and assume that he is just over stimulated or over whelmed. There are times that I still believe that to be the case. However, majority of the time it’s manipulation. If you read back into the archives of this blog you will find examples of what I’m talking about. For years we dealt with these meltdowns upwards of 6+ times a day. They would last anywhere from 10 minutes to hours at a time. About 2 years ago things were really bad and the meltdowns would send Lizze, Elliott and Emmett to the other side of the house to hide. I would do everything I could to defuse the situation. We tried everything we could to help him. Nothing ever worked and if it did, never more then once. Then one time Gavin was melting down so badly that Elliott and Emmett were both crying because Gavin had them so scared. Neighbors 4 doors down were coming out of there houses to see who was screaming. Out of shear desperation, exhaustion and stupidity on my part I told him that if he stopped right now I would give him ice cream. I’m not sure what I expected to happen but I was desperate to just make it stop.  It was like someone had flipped a switch and just shut him off. I had never seen anything like that before. I knew at that point that he was in control the whole time and honestly that scared the crap out of me. We talked with his doctors at length about this and they all agreed that if he was truly that out of control and melting down then he would most likely not even hear a word I was saying to him. He would be to over whelmed and over stimulated and just wouldn’t hear it. The fact that he can just shut it off and emotionlessly move on as if nothing happened is actually kind of scary. When these meltdowns occur we have learned to gauge when he is truly out of control and when he isn’t (at least we do our best to). We never really know for sure. That’s the part that bothers me the most. I never want to be unsupportive to him in his time of need but at the same time we can’t allow ourselves to be “played” either. We have to ensure the health and safety of EVERYONE in the house.That’s why I’ll say things like “this is doing nothing for me” or “are you done”. I know it comes across on the videos as callus and cruel but most of the time what happens is he realizes that I know he’s in control and basically choosing to do this. Once he realizes that it usually ends pretty quick like it did today. However, that being said, there is always a part of me that wants to believe that he has no control over this. I don’t want to think that he could be doing this on purpose. Gavin’s biological father is a sociopath (with a long history of addiction, abuse and violence) and we have tried so hard to nurturer Gavin and keep him from going down that road. It goes back to nature vs nurture. It seems that no matter how much we love him or how hard we try, nature is winning.

I realized by some of the comments today that many of you don’t have the benefit of knowing this without reading through over 1,000 posts. I wanted to fill in some of the blanks for you. There will be some who still disagree but your not in my shoes living through what my family is living through and this is just with Gavin. This doesn’t include the struggles we face with Emmett, Elliott and Lizze ever declining health. I’m desperately trying to find answers and have run out of people to ask. On average 2000 people a day view this blog. Maybe someone will have an idea that can help or even point us in the right direction. I hope this makes sense as I’m exhausted and my head is pounding. Make no mistake, I love Gavin with all my heart but I have more then just him to worry about. It’s an impossible situation on the very best of days and utterly hopeless on all the rest.

-lost and tired

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Greg

Rob. Hey – I frequently read your blog (pretty much each time I see your link in XDA dev forum).

I want you to know that I really respect you sir. In my daily struggles to not be a narcissist and so self-absorbed in my own stupid problems – I see a man like you who lives a life completely about others and not about himself. I am humbled/troubled/convicted/conflicted and often avoid your blog for those reasons.

I had a friend, Lindsay S, who I went to school with who had an autistic child 7 years or so ago. 3 years ago Lindsay committed suicide. It was a life that she could not live. The hell seemed to escalate with no end in sight.

It is beyond my comprehension how to reconcile my faith with some of the things that happen in this world. However, I am forced to believe that one day there will be a clarity given to us and we will be able to see the greater purpose in our trials … on that day where faith will become sight.

You are a real man my friend. No greater love has any man than he who lays his life down for his friends. I respect the love that you have for your family and I would be very careful to second-guess ANYTHING that you do as the ones above were so quick to do.

Hang in there my friend. I will pray for you that things get better. – Greg

Trisha

As Rob mentioned I have witnessed several of these melt downs. I live 3 houses and an alley away and have often times heard him at my home. Leaving him unattended to calm down is really not a viable option as Gavin is prone to inflicting pain on himself.

I understand how the videos can be disturbing to watch. I have witnessed the outbursts on the front line so to speak. I opt to not watch the video and pray instead for Gavin and the family.

I have been on the front line with Gavin and have also been the person holding the babies. When you are face to face with a child you adore and love in such as state it is painful. When you are down stairs holding another of the children you adore and love it creates a desire to protect at all cost.

Beth

How long to his attention seeking tantrums last when he is denied attention for them? If you simply leave him in his room and ignore him will he stop? Will he stay in his room? If his tantrums are fueled by attention, you may want to consider a quiet room where there is nothing that he can hurt himself on but nothing rewarding or engaging either. If you have a space in your house that can be converted for this purpose, please consider it. Maybe put some large pillows and other calming sensoy items like weighted lap pads. You should be sure that the door has a window at adult level so you can supervise him without being in the room with him.

Lost and Tired

Beth that's great advise. The problem is he escalates regardless. This is where I have a problem with the doctors at Akron Children's telling us to let him hit himself because it's just for attention. While I agree, the problem is that Gavin just doesn't work that way. If you look back you'll see pictures where he has scratched up his forehead really bad. He leaves bruises on his face and has now taken to bending his fingers back to the point they touch his wrist. The only thing that ever (and by ever I mean more often then never) works is to call him out. If we tell him we know he can stop and if we tell him this is doing nothing for us he will "usually" quit. However this doesn't always work. I wish we had a room like you suggested because that would be perfect.

The real problem is shielding the other kids from this behavior. There isn't ANYWHERE in the house you can go to escape it. He can shake the entire house and literally rattles the windows when he really gets going. The other boys are beginning to model this behavior so we have to quash it as quickly as we can after it starts. The really tough part for me is knowing anything FOR SURE. All we have to go on is what ALL the specialists and doctors tell us. We also have our own experience but Gavin changes so frequently that it's never the exact same thing twice. All we can do is what we think is best given all of this and hope it's the right thing…and I'll be real honest with you, that's a completely helpless feeling….

Thanks very much for the advise. I really appreciate the feedback 🙂

Lost and Tired via F

Heather Palare wrote via Facebook: This is frustrating beyond belief that you have to explain yourself. Education is key. If someone is going to post such responses on your blog, then they should grasp the full situation. You have my empathy and understanding. Furthermore, you have gone above and beyond what I've seen from parents of some of my students. I appreciate how you document and share your stories; many are lost without them, and many DO understand. You owe no explanation. You have more than enough on your plate. Best wishes.

Lost and Tired via F

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