A day at my house

Guys, my writers block is getting real. So if you ever have ideas for me...feel free to send me inspiration. I am all ears.

I thought about getting back to basics. A video would probably do this the most justice, but out of respect for him and frankly I would need a 3rd party to capture. I don't have a crew, so I will try to knock this out in writing.

To start off, remember...we don't really have a good label for this. Sometimes you just stop caring about that and other times it pisses you off because without a name...there feels like there will never be answers.

In my eyes, G has Tourettes. Not that I am a pysch or have a medical degree, but I have watched many documentaries of people with Tourettes and I see that in my son more than anything else. No one really agrees with me medically. So he is autistic.

Not that this means NOTHING. It means something. It's just not super helpful. For those of you that don't know, it's not a blood test. It's not medical. Anyone can be autistic that meet so many requirements on the check list. It's the same with catatonia. Do you meet 3 of the 12 criteria? Ok, you're catatonic. Maybe a pysch would disagree with me. But, when you have someone that can't talk about feelings and you are just observing...there is only so much we can understand.

I don't pity Grant, but do i feel sorry for him? Yes...is that the same? I guess? Do I pity myself? Yes, yes I do. This is a shit way to go through life. I wouldn't wish this on anyone. I don't "why me" but I think it's really f'ed up that he has this issue at the highest degree.

Let's go through an average day. If you are interested...

We have to sleep with him. At least 1 adult. It really bothers me, not for my back or my sleep, but the future. I deeply worry about the day we pass and if he still needs this to sleep. I worry about him getting sexually abused and to ask someone to sleep with him is not helpful to my worrisome mind. Until that day, we sleep with him. The institute was unable to sleep train him after all of that time. We weren't able to change anything because he's self injurious at night. As we sleep and he awakes as we all do throughout the night, he sits up and slams his forehead into his knee and then lays back down. If he doesn't do that, he punches his chin or he slaps the side of his head. He will also try to hit me. You have to wake up immediately and help block the hit you are about to get or pull him back down to go back to sleep. He gets comfortable and goes right back to bed most of the the time. This can happen 1-50+ times a night.

If you leave him and he notices (after falling asleep) he typically gets up and looks for someone. Who knows how many hits he can get in until you notice he is out of bed. It sucks because it is dangerous. Most of the time, Scott falls asleep with him and I sneak out. Then somewhere early in the morning, Scott gets up early and I hold G until he has to get up for school.

When he wakes up for the day, it's much of the same. I mean, he can wake up more sleepy and less punchy, but it can go either way. We put items in his hands so he can't self harm so we can get ready for the day.

Tues-Friday he goes to school and he gets off the bus around 2:45. His hands are full of things. Most days he cares a travel size pillow, an ipad, and a plastic toy bus. We have found this combo to be best to keep him from hitting. Of course, he sets the items down and he often forgets to grab them. You will hear us telling him to "get his bus". Moving from thing to thing without something in his hands is unsafe. When he is on the ground or sitting position, we are constantly pushing down his legs so he can't slam his forehead into his knee.

This is how it goes until bed time. We spend every minute keeping him safe from his impulses to self injure. There are times that this dies down a bit and it's relatively calm-ish. It can turn quickly and he can be on the floor bashing his head. There are pts where I basically lay on top of him if it's really bad. It's surprising how often he does not mind this. He can be severely out of control. I really have no choice as he gets bigger and stronger.

Our Sundays can be pretty crap around here. It's not a great day for us to make plans. His treatment is on Monday and frankly maybe only doing this once a week isn't enough for him. So... we muddle through.

He does not want to hurt himself. Last night he rammed the toy into his face and I saw the look on his face. He was about to cry. He was visibly upset. I know many, many people that believe their disabled child doesn't feel pain like they do. I don't agree. I think they do. I think they don't show you because they don't have the same social rules. Pay attn to the next time you get hurt. Do you need to cry? Do you need to call out? Do you act the same around people as you do when you are alone? My guess is you don't. Why do children cry and cry and cry when they get hurt, but adults don't? Social rules. This is my theory.

I love this kid so much. I never knew there were people out there that had this little control over their own body. I guess it reminds me of an itch. For him, he has to scratch. He can't stop. It's just very, very hard to understand. His current treatment is only helping on some level. It was not the answer. We continue to keep our eyes and ears open for other things that might give him a better life.