I wanna Rock n’ Roll all night!

Journal entry, July 25, 2011: “It’s 3:15 a.m., I’m on my third day with no sleep and Kamp isn’t showing any signs of slowing down. It seems like the longer he goes without sleep the more energy he has, and the more manic he becomes. He is currently standing on the back of our couch and jumping to the floor yelling  jibberish at the top of his lungs. The only visible signs of sleep depervation are the deep set circles under his eyes. They are so purple; it looks like someone punched him in the face…then again, maybe he’s a vampire. And with the endless nights, I’m starting to wonder if he is, in fact, a vampire.”

In my “Groundhog Day” post, I talked about  Kamp’s regression and how he slips back into old habits. Well, we are once again enduring the, no-way-am-I-sleeping stage. Truth be told, of all the things he does, it’s probably the hardest to endure. Its exhausting, and its not as if I can sleep during the day. Jesse has to work and I have two more kids to take care of. I wish it was as simple as putting him back in bed, or spraying the closet with “monster spray,” turning on a movie, or just locking him in his room. 

Kamp doesn’t wake up like a normal human being (yawn and stretch), he’s CRAZY and AWAKE. When he gets up it’s like he’s taken a crazy pill. He is hyper, manic, and won’t sit still. He jumps, and yells, and jabbers to himself, over and over and over again! Turning on the TV doesn’t help because of the language barrier; I’m not sure if he’s had a bad dream, which means I’m unable to take care of the “monster.” Jesse and I are terrified of locking him in his room because he gets violent when he’s upset, and we’re worried he’s going to seriously hurt himself.  So, what do we do? We give him melatonin (Melatonin is the natural chemical in your brain that tells you, you’re sleepy; it’s a  non-addicting  herbal medication.) to help him wind down and go to sleep; but it doesn’t make him stay asleep; and when he gets into his crazy moods, he’ll wake up even with the melatonin. It’s no wonder he and I have had a few, “Come to Jesus” moments on crazy sleepless nights.

It’s maddening to watch your beautiful baby deteriorate right before your eyes, while you’re helpless to help him. It feels like I’m watching him slowly slip further and further away from me, and there is nothing I can do. It’s heart breaking . My sanity may sometimes waiver but I do have a great support system in my brothers and sisters. Jesse and I can still find humor and joy in it all. And who knows, maybe he really is a vampire. I think I’ll start wearing a lot of silver. You know, just in case.

I see autistic people (She says in a whisper.)

The other day Jesse and I were at Deseret Industries (D.I.) looking for a bike wheel when an employee walked up to us and said, “I just read.” (Blank stare; awkward silence.) Jesse and I weren’t sure who he was talking to; he was looking at the floor. He went on, “I read somewhere that record companies are going to start making records on vinyl. I am so excited about it.” He launched into a rant that didn’t need our input. He went on about the different music listening options; vinyl was clearly his favorite. Because of our home life, Jesse and I quickly realized that this guy must live somewhere on the autism spectrum and we let him go on and on about his favorite subject, which was his way of trying to relate to us. We loved it!!!

I get asked this question all the time, “Do you see autism in other kids?” It’s not as if I’m the unnamed murderer in Poe’s, “The Tell-Tale Heart.” Just because I have an autistic kid doesn’t mean I hear the “thump, thump” everywhere I go; I don’t see autism all the time.  But that isn’t to say that I don’t see kids with obvious symptoms. It’s difficult when I see symptoms in a kid and their parents are TOTALLY clueless. It makes me sad because they (the kids) aren’t getting the help they so desperately need, and there’s a sense of frustration – even dislike – for these kids because others have the wrong idea about what’s going on. It’s hard because they’re incredibly smart and the signals get lost. Like noticing that your child is completely socially handicapped, or has no idea what a “friend” is, or  they have no idea how to cope when things don’t happen the way they should, or taking things VERY literally and not grasping the underlying meanings in things people say.

There have been a couple of times when this has happened (thump, thump).  And when it did, I wasn’t exactly sure what to do. Do I say something and risk having them completely hate me forever, or do I keep my mouth shut and hope they figure it out? I’m not a professional psycologist – yet – so I worry that people will just think that I’m, “The Tell-Tale Autism Lady.”

When Kamp was diagnosed with autism my neighbor across the street, who has an adorable daughter with aspergers, said, “I thought he did.” I said, “Why didn’t you tell me!?” Now that I’m on the other side, I get it.  Even though I try to live by the motto, “It’s better to know”, because you can’t do anything if you don’t know what the problem is; looking back, I’m not sure I would have listened. So, this week let me throw this question out there: If someone noticed those signals in your child would you REALLY want to know?

Groundhog Day

I chuckle when people tell me, “Oh, this phase will pass.” Or, “They’ll be grown before you know it.” I just smile and say, “Yeah.” But inside I think, “YOU HAVE NO IDEA WHAT YOU’RE TALKING ABOUT!” I have an older child; I know Hadley eventually grew out of the “biting” stage and the “pulling everything out of the bookshelf”stage. She was even eventually potty trained; she grew up, learned and moved on to the next thing. It’s a completely different ballgame for Kamp.

In the course of the day, I tell Kamp – literally one hundred times – to stop opening and slamming our entertainment center doors. At night I go to bed knowing I am going to tell him one hundred more times the next day and the next and on into the unknown future. I haven’t been dealing with this repetitive behavior for a month, or a few months; I have been dealing with this for years! He may stop for a short time, but then something triggers the behavior and he’s right back in the “stage” again. Sometimes I’m aware of the trigger, like a change in routine or not feeling well, but other times I have no idea what sets him back; I’m not sure if these behaviors will ever end. I say to myself, he’s going to be 16 and I’m still going to be saying, “Kamp NO slamming doors!”

Sometimes I feel like I’m stuck in the movie Groundhog Day. Everyday I deal with behaviors that NEVER seem to disappear like: slamming doors, refusing to use utensils, sneaking out of the house, pushing the screens out of the windows, jumping off the top the bed, sucking on shirts, crawling, head butting, slamming toys against the wall to make holes, pulling blinds, taking EVERYTHING apart. Oh, and potty training (but that is a whole different post). So you can understand when I’m dealing with these things everyday and people tell me over and over, “He’ll grow out of it.” It can be maddening; sometimes I feel like I’m going a little crazy.

Remember in Groundhog Day when Bill Murray runs into his old high school classmate, Ned Ryerson?  Ned says, “Watch that puddle, that first step is a doozy!” Bill Murray’s character eventually punches him in the face. My Groundhog day usually ends with Kamp punching me in the face; lets just say it can be irritating.

I love my little boy so much. Tonight, I know I am going to lay my head on my pillow, go to sleep, wake up at the same time tomorrow and do it all over again. The crazy thing is,  I wouldn’t have it any other way.