A LONG overdue update…..it’s pretty honest

It’s been a while since I have just update everyone as to how everything is going. Honestly, since the “bare handed man” post I have just been struggling to write anything meaningful. There are a few reasons for that but the biggest is just that my thoughts are a mess. I have so much I want to say but just can’t string the words together lately. So if you read this please don’t expect anything “profound” as you will most likely come up empty handed. Instead I thought I would just try to share what my life is currently like in a very honest fashion. I know it’s depressing to read but I just think it’s important to show the world what our lives with Autism are like. This is something I truly believe in and so I will continue to expose the world to the reality that the “Lost and Tired” family lives in.

I’ll cut to the chase and then give the details. Things aren’t good and here’s why. Gavin is going through a regressive phase again. He has lost some more abilities, most notably, his memory. He CAN’T remember anything anymore. I find myself getting increasingly more frustrated as this goes on. I like to think that patience, for me, bubbles up from some unlimited source buried deep within me. The truth is, in fact, the very opposite of that. Patience has become a precious and threatened natural resource of which I just don’t have enough of anymore. I’m so tired of repeating myself only to repeat myself again and again. I know Gavin is trying but this is just exhausting. I’m seeing meltdowns every day now. Gavin melts down over anything anymore. If you ask him a question (mind you he isn’t even close to being in trouble) he hits himself in the head and starts to “growl”. He ends up getting in trouble because of his reaction to the innocent question. He is also obsessed now with writing (which isn’t a bad thing) but it’s bizzare writing and he’s trying to teach Elliott to do the same. Sadly, Gavin is rarely a “good” example for his younger brothers. Gavin says “I feel like I’m losing my mind”. That’s probably not a good sign. It might mean that he is having a harder and harder time staying planted in reality. That is a very real and constant struggle for Gavin…something he will struggle with the remainder of his life. This is one of the reason the “bare handed man” had such an impact on me.

Emmett John…not sure what to say. Emmett is a completely out of control. None of the things we are learning at Akron Children’s seem to be working. Yesterday Emmett bit Elliott on the leg (thru his pants) hard enough to leave bruises. Lizze has 2 scratches right under her right eye. I don’t know what to do. He is such a sweetheart but can turn very quickly. We still have MAJOR communication problems. Well, I’ll be honest, we have almost no ability to communicate on any meaningful/productive level. He is picking up on more signs. So far he independently uses the following:
More
Milk
Hungry
Eat
Please
Thank you
Yes
Jump
Ball
-–———————
We are really proud of his progress and it does help but we have such a long way to go. He is screaming A LOT now. When he wakes up he just screams and screams for about 1 hour….usually. Sometimes more, sometimes less. You can’t touch him or console him. Every time I have to helplessly watch this, a little more of me dies. Do you know what it feels like to not be able to comfort your child? I have to fight my every instinct. Everything inside of me wants scoop him up and just snuggle him and wipe away the river of tears streaming down his face. Instead I have to watch from the side lines because he won’t tollerate being touched. Emmett is glued to me. I am the only person he wants right now. While I always enjoy spending time with him it’s completely exhausting and literally takes up almost ALL my time. Emmett requires CONSTANT attention, literally CONSTANT…like every single minute he’s awake. Most people have no idea what that’s like.  He is a constant threat to himself and seems to have no fear of anything. He also lashes out at Lizze and his brothers often inflicting physical harm. We know he doesn’t mean to hurt anyone…well we know he is being malicious.. He’s frustrated and doesn’t know how to get anyones attention. That’s something we are aggressively working on but it takes time.

Elliott is stuck in the middle..as usual. He is really starting to struggle with everything going on around him. He is an emotional wreck and cries all the time over EVERYTHING. No one else listens…so why should he? We are also seeing the VERY OBVIOUS signs of ADHD as well. However, before we jump on that bandwagon, it could also simply be anxiety. It’s a very realistic scenario as Lizze also has ADHD and so the chances are VERY high that we will see that in Emmett and Elliott both. No one is sure about Gavin as he has far to much else going on. He has had a few issues as of late at school with being able to sit still and being very……”fidgety”. We are going to run Elliott through the Autism clinic at Akron Children’s hospital. We need to know for sure what’s going on and make certain we didn’t miss anything. They want to do this anyway due to the fact his other two brothers have been formally diagnosed and our situation is not very common (especially for a blended family). Right now Elliott is in weekly therapy to help ease his stress and give him a safe place just for him. It’s also the same psychologist that Gavin uses and she is amazing. She says she’s 70-80% convinced Elliott has aspergers he hasn’t really had to many problems so we haven’t really pursued it any formal testing.

 

Lizze is 3 weeks post op and really struggling. Her recovery has been complicated and SLOW.  Her pain level is so much worse now then it was before. Her migraines have become even more unbearable and she is suffering from depression. The sleep disorder is also not improving . She is completely overwhelmed and basically shutting down.  She has nothing left to give having already given EVERYONE EVERYTHING she has for so long. She has spent herself into a deficit and overdrafted so many times she may never fully be able to replenish her account. Lizze is constantly being assaulted by Emmett. Her face and neck is all scratched up never has a chance to heal before it happens again. It’s demoralizing for her as you can see in her video blog she did today. I don’t know how to help her other then continue to try to help her and shield her from as much as I possibly can. She desperately needs a break from the onslaught of crap that keeps happening to her.

 

Finally on to me…. I’m completely and utterly overwhelmed. There is simply not enough time in the day or enough of me left to go around to meet everyone needs. Everyone needs more of me then I have left to give. I just keep going and pushing but my fear is that I’m quickly reaching a point where I will simply break. For a while now everything is falling on my shoulders as Lizze’s health continues to decline.  The kids want me to do EVERYTHING. It’s nice to be wanted but I’m only one person and not even that great of one to be honest. I just can’t keep up with hardly anything. There is just to much pressure and it’s suffocating. Meeting and experiencing the “bare handed man” really messed me up. I just can’t get it out of my head. There is so much in life I have to be able to prepare the kids for and right now I can’t even accomplish the simplest of things. I’m terrified something is going to happen to one or both of us and where will the kids go? We have lost almost all of our friends and even some family have disappeared over the years. I have so many things to worry about. I have realized that our house is way to small and our neighborhood isn’t going to cut it anymore. My kids can’t play out side without being called “retarded”. It’s disgusting, ignorant and simple minded.  It takes EVERYTHING in me not to go after these people and literally beat the shit out of them and I’m not a violent person. I stress out everyday because I can’t give my family a better and safer environment to grow up in. We barely make ends meet and can never, ever get ahead. Even if we found a new place to live in a better environment I doubt I could ever pull it off. The future is a terrifying thought and a growing part of me wonders if we even have a future anymore.

 

Right now we have moved into survival mode. We have focused on the most essential things and most everyone and everything in on the back burner. We just don’t have a choice. At the moment I’m desperately trying to keep everyone from drowning and I’m barely able to do that as it is. There is so much I have to get caught up on I don’t even know where to begin. Life is not easy right now and we are not doing very good but I’m not giving up just yet.

1 comment

  1. Rob, I hear the fear in both you and Lizze’s writings.

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