Look I’m going to be completely honest. Everything has gone down hill for me this evening. I thought I was holding it together but I’m done. Gavin is driving me absolutely CRAZY. He just can’t do anything like he’s supposed to. I’m only talking about things I know he is capable of. Simple 1 step tasks seem like we are asking him to reinvent the wheel. He stalls and stalls all the time instead of just doing what he is freaking asked. Everything seems like a game and the game is manipulation. I swear he plays head games with ER. He wants to play then doesn’t want to play. If he does play he is the only one that is allowed to have an imagination. Anything ER imagines is quickly shot down by Gavin because “it’s not real”.
As a parent it’s hard to watch this happen. However, if I’m going to be completely honest, it’s harder for me because ER is my first born. I raised and finally adopted Gavin. It’s just not the same thing. I know how it sounds believe me. I also know how big of a monster it makes me feel like. It’s the truth though. I have this overwhelming instinct to protect ER from Gavin. I have to be extremely careful not to play favorites but it’s getting harder. EJ never really interacts with Gavin but when he does it’s the same thing. Gavin actually complains when EJ cries. He actually complains. I realize it’s probably sensory but HELLO, WE ALL have to listen to and feel every single one of his God Damn meltdowns. I just want to scream “hello pot, meet kettle”.
I sound juvenile but I can’t even explain how overwhelmingly frustrating it is. I just get to a point where I can feel myself cracking into pieces. I don’t know how we are supposed to know what to do? Who do we cater to? I don’t see a way to do this without “playing favorites” so to speak. Sometimes I feel like just giving up. Nothing I can do will make things any easier for anyone. Gavin is always going to be difficult. Elliott Richard will probably always be trying to connect with his big brother even though he just keeps getting shut down.
I have no idea what’s going on with Emmett John. Will he ever talk? Is he going to regress and slip away like Gavin? This scares the shit out of me every single day. Are we doing enough of the things right that we are making a difference? How do we even know? The children’s hospital still hasn’t gotten the paper work to get things started. That paper work has been faxed at least twice by different people and even mailed weeks ago.
All of this makes Lizze’s condition worse. Fibromyalgia feeds on stress. Our lives have become a freaking all you can buffet for it. There is no way to take her pain away or even make it better, even a little. This kills me. It’s like waking up everyday to a nightmare.
One of the worst parts is that I KNOW very few people actually know what this feels like. I hear how things could be worse. Worse is a relative term, it’s different for everyone. For me I feel like at times we have finally hit rock bottom only to have the floor collapse and we continue to fall. I don’t want this for my family. I wouldn’t even want this for my worst enemies family.
There are times in dealing with things that I think everything just might be ok but tonight everything just seems to be falling apart around me. The things we need to help us just aren’t available. At this point I have talked to some of my family and asked them to get certified as care givers. Then instead of complete strangers getting paid to provide respite, family can get paid to do it instead. I’m hoping someone agree’s to do it. Everyone is living there own lives though and we don’t always fit in. The kids don’t have nearly the relationships with my siblings that I had hoped they would. We are the only one’s with kids. I had hoped that my brothers and sisters would be active parts of their lives but they aren’t really. That hurts. We need a break. That’s the best help we can get right now but it’s also the hardest to come by.
Thank you for sharing our lives. LT
I am so sorry this is getting so hard. We all have days like that I had one earlier, Natalie was all about dictatorship. She wanted what she wanted then. It’s hard cause we try to support one another, but in the end we are faced with these kids and the outside world doesn’t always see it. Family can only hope so much, which isn’t always the case. Friends don’t get it, if you can even keep any as the kids can sometimes cause that to become a Berlin Wall so to speak. We are unique as parents and there are times we need the timeout. These kids need to know it’s not their fault and that what Gavin does will force you to be more protective of your own. Not that he isn’t it’s just a different kind of protection. I feel very bad that Lizze can’t get the relieve she probably desperately needs. She is always in my prayers with her illness and stress. I wish they made a book that helped us raise them better, and keep the peace between siblings. Mine are learning consequences right now. How they can’t pick on Alexis and expect to get away with it. It’s hard and just remember we will always be here to have someone to rant at online. You do a great thing by sharing how you feel and what you go through I don’t find many dad’s who blog about their kids the way you do. You have an incredible gift to open the eyes of those who don’t know what Autism can be like. Have a good night and hopefully a better tomorrow.
May 27, 2010 at 10:59 pm
Thank you so much. Yesterday was just one of those days were it feels like all the hope has been suck clean out of the world. Thank you for being there when I know you guys have your hands full with more then your share also. It takes special people to do what we do. You guys still manage to amaze and inspire Lizze and I. Thanks again.
May 28, 2010 at 1:11 am
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First of all, you’re not a “monster” for feeling like you need to protect Elliott. Elliott IS the one that needs to be protected from Gavin. I’m sure if it was reversed and Gavin needed to be protected from Elliot, you would have that same “overwhelming instinct” to protect Gavin.
As I said before, I know how frustrating it is dealing with the stalling. Cadence is the exact same way. Whenever I ask her to do something she will forget it not even a minute later. Then she finds any and every excuse to not do it. And she’s only five now, so I can’t imagine how many more excuses she’ll come up with by the time she is ten. At the same time, I can’t complain much because I know how difficult it can be for ME to do the simplest of tasks. I get so lost in my thoughts and/or become so distracted by all the small things, sometimes I’ll flat out forget what I was going to do. The only thing I found that helps me focus is listening to music. I guess it’s because it helps block my thoughts as well as the sounds around me. It becomes what I tune out while I am working, instead of tuning out the thoughts of what I need to do. I know that probably makes no sense to anyone but I don’t know how else to explain it.
As far as Gavin complaining, I say let him complain. It probably won’t be the easiest thing to do, especially if he has a meltdown, but maybe over time he’ll learn to tune it out. It seems weird to want him to tune things out, but that’s about all you can do when it comes to things that bother the SPD.
I feel bad that Elliott has to go through this with his brother. Being so young, it has to be hard for him to understand. If Gavin will understand and go along with it, maybe you could try setting up a time once or twice a week that you have an “Elliott’s Rules” day. Only Elliott will be the one allowed to make the rules for playing that day. You could even reward Gavin for playing by Elliott’s rules, if need be. In any case, I’m sure as Elliott gets older, he’ll gain more understanding for the situation. And I’m sure he’ll have plenty of friends to play with.
I’m sorry that Lizze is in so much pain. I pray that she’ll find something that helps. Maybe once you two start having your date nights, it’ll help relieve some of the stress she is under. And hopefully someone will agree to become a caregiver and then you two could get more breaks.
It may seem like nothing you do is going to make things easier, but think of how much easier things are because of what you’re doing. Thinking of what the future holds is scary, especially when thinking of your children. The best thing for that is to try not to. Instead, try to focus on the present. Easier said than done, I know. Both of you are doing all you can for your children. If more parents put even a fraction of the effort into their kids’ well-being as you two do, the world would be a much better place.
May 28, 2010 at 12:06 am
I don’t know what to say. Thank you just doesn’t seem sufficient. But thank you anyways. I get to the point like where all I want to do is cry. But I just can’t seem to. I really appreciate your perspective. You made perfect sense to me. I am grateful for your insight and words of encouragement. Thank you again.
May 28, 2010 at 1:07 am