I just read Lizze’s post and think I should clarify what she meant and build on it. I believe what she meant was that even our parents are beginning to feel the overwhelming exhaustion that is Gavin anymore.
We realize that this is our responsiblility. It wasn’t until recently that we even let people in enough to see just how bad things are because we believe so strongly that this is our responsibility and we knew just how overwhelming/unbelievable it was to hear about. What’s frustrating for me and I am sure Lizze also is that the only one’s willing to help are the one’s that don’t have to (ie my family and Lizze’s parents) and the one’s that are obligated to take responsibility don’t and actually try to make things worse for us and Gavin out of spite (ie Gavin’s “father”).
More recently we are feeling like it is unfair of us to “share” this “burden” (we love Gavin but burden is pretty accurate) on anyone else. I believe that is what she meant because we were discussing this last night. Please know we are extremely grateful for all the help we get, it’s just getting harder to accept because we know what we are asking of people when they take him for even a little while. The guilt we feel for having to send him is immeasurable. We are wrestling with some VERY difficult decisions right now. We are just cannot win no matter what we do. Someone will always pay a price. Right now we have to ensure that it isn’t Elliott and Emmett.
As I am writing this I had Gavin come down and ask for his Lego’s back. They were taken away a day or two ago because of a massive melt down. He was trying to kick Lizze (he denies that’s what he was doing but I just think he was so angry he doesn’t remember) all because a few pieces of his Lego ship fell off. When I got home and checked on him he had completely destroyed his Lego’s and cut the palms of his hands smashing his Lego’s as hard as he could.
Anyways he came down a minute ago and asked for them again. I told him no and reminded him that the more he asks the longer he will wait. He then made some smart remark to me and I responded by reminding him why his Lego’s were gone and he should consider himself lucky that he has a chance to get them back at all. Of course that didn’t go over well and he completely lost it and I sent him to his room but on his way Elliott comes up to him and tries to tell Gavin “don’t worry, it’s okay, don’t be sad” then attempts to give Gavin a kiss to make it better and Gavin screamed at him. Then Gavin went upstairs to finish his meltdown. He apparently heard Elliott say his name from the living room so Gavin started screaming at Elliott to leave him alone. This is happening more and more often.
We need help and no one knows what to do. He has the best doctors but everyone is at a loss. Don’t get me wrong, we love his doctors and are very grateful for all they continue to do for him but they are supposed to know what to do and they don’t. So we are left to our own devices. We are told we are doing everything right but it doesn’t feel like it because nothing is getting better.
Oddly enough the only comfort we get is that everyone else is seeing the same things we are. I know it sounds crazy but it was comforting when Lizze’s mom had to bring him home because he was so out of control. I say this because it shows me that it isn’t just us. Which then means maybe this isn’t our fault after all.
So I ask anyone who helps us with Gavin to always be honest with us about what went on. We need to know this stuff for many reasons but right now the comfort of knowing it isn’t just us…..