Sorry for the dreary posts today but it has been an especially bad day. Gavin is driving me absolutely out of my mind. We need to get him stabilized ASAP.
Emmett John is going through something. I wish I knew what it was so I could help him better. He is becoming so destructive. He gets angry for whatever reason and he lashes out. He knocks things over and throws what ever he can. He absolutely targets Elliott Richard. He hits him with blocks, cars and other toys. We stop him and try to tell him he can’t do that but he’s 22 months old and doesn’t understand. He screams alot of the time. It’s like he’s a bat and uses the high-pitched screeches to navigate with. We have somewhat learned to interpret his noises but we are always teaching him to use his words.
Elliott Richard is taking it for both sides. He has to deal with Gavin’s outbursts and now Emmett John’s aggression. I wish we were better able to shield him from all of this but we can’t. He is always glued to me. He has to be everywhere I am. It honestly doesn’t bother me at all. The problem is that Emmett John is going through the same Daddy phase. They fight over who gets to sit on my lap. It just never seems to end.
Lizze is in the worst place health wise she has ever been. She can’t get rid of the migraines. Her fibromyalgia related pain doesn’t seem to ever give her a break. The only thing they can do for her to seriously, seriously medicate her. She avoids it when ever she can because the meds completely knock her out. That means she can’t drive or even watch the kids because they make her fall asleep in the middle of whatever it is she is doing. Instead of taking the pain meds and feeling better she just pushes through the pain. Amazing…
My back is in pretty bad shape lately. I really need surgery but I keep avoiding it because of the risk and down time. I spend every day trying to figure out how to keep us moving forward. We desperately need to get a van because our car is way to small and falling apart. Gavin and Emmett John are both special needs and they need their space. Right now we have 2 car seats and Gavin all in the back of a 94 lumina. Elliott Richard has nowhere to hide from Emmett John. We have almost had a van a few times now but it always slips through our fingers. I used to really stress out over bills but anymore they are a back burner issue to everything else going on. Why stress out over bills I can’t pay when my wife is sick and 2 of my 3 kids are at least autistic. When you only have so much energy left, you have to prioritize. The spring and summer are better times for the business and things get a bit easier but until that happens things just don’t always get paid.
Our house is falling apart around us. The kitchen sink and bathroom tub is leaking. There are no (not one single one) water shut off valves anywhere besides the hot water heater in the entire house. It’s all very old plumbing and going to be costly and challenging to fix. One of these days I ‘m going to take pictures of the insanity that is our homes plumbing and post them. We also have about 20 oversized original (over 100 years old) windows that are all falling apart and way to expensive to replace. The wiring in the house is still knob and tube in some places and the updated parts of the house were poorly done. As a contractor I know how costly and difficult these things are to repair and/or replace and I hatehaving to fix them incorrectly just to make things work with what was already there.
We are in our house on a land contract so we can leave when ever we want. However, we have nowhere to go. Gavin significantly limits us to where we can live. Because of his meltdowns and other various behaviors we couldn’t live anywhere that shares a wall, ceiling or floor with anyone else. As parents to special needs children we already know that most people don’t understand.
My wife and kids deserve better than what I’m able to give them. Admittedly, my hands are tied in most of these matters but that doesn’t make me feel any better. I should be able to give them more.
I know I’m not alone in my feelings on this subject. Where is all the help for families like ours. MRDD funding for Gavin is a complete joke. They were supposed to help with a fence so Gavin can safely play outside but that never happened. Now with Emmett John going down a similar path what are we supposed to do. Things are going to be even more challenging than they already are. We have very little help as it is.
I said when I first started blogging that I was going to tell it like it is. This is my/our reality. This blog is really my only escape. I’m not looking for or trying to elicit sympathy when I do these posts. I write what I need to get off my chest. It’s that much less I have to carry with me.
These are all truths my family and I live with everyday. Right now is just one of those really low points for me as a husband and father. It’s like I’m forced to watch my family crumble around me and there is nothing I can do to help. It’s like those dreams where you are running as fast as you can but aren’t getting anywhere. Maybe tomorrow will be a better day than today was. I never hold my breath anymore but I will certainly be grateful for a better day tomorrow.