Hard facts

Before I start this post I want to say that this isn't a "woe is me" post. It is meant for the "if" someone someday comes across it that has a child like mine they can read it and realize they are not alone.

As I've stated in previous posts when Levi was a baby he would cry non-stop unless I was holding him. His body didn't feel right to him. When I held him, it stimulated him and I was/am his center pole in his life. I do a big no no with my babies. I sleep with them. From the very first day I brought Levi home when he was so tiny tiny I would put him in bed a few inches away from me and even being a newborn something in his little body told him he needed physical touch so he would squirm his little body over to mine until his forehead was touching my skin. Usually my neck. I would move his little body away and he would work his little way over again. This has been a pattern for Levi and I think even though I don't know exactly what but that there is something significant in this. Levi has always needed his forehead against skin. Part of what he has does involve migraines. I do believe there is a connection. I have learned although awkward that when he is having an attack to literally take my forehead and press it against his.

Levi never played with toys. He wouldn't look at a t.v. or computer screen. He would get into everything! Because he wouldn't play with toys and still doesn't he gets into things. Cupboards, drawers, etc. This sounds terrible but I lived for his naps and bedtime. He doesn't take naps anymore but I still live day to day for his bedtime. My brain can finally rest. Well, as much as a mom's brain can rest when your ears and senses are still perked listening. Because Levi has never been able to tell me if he is hurting, if something is wrong, I have literally had to tune my every senses into him. I do not ever rest. Even at night when we are sleeping. He has a certain moan and cry that will jerk me out of bed running to his room faster than anything and that is saying something because I am not a "get out of bed" person. :o)

I have never had to have my house in such lock down as we've had with him and as he's been able to figure out locks we've had to either move them higher or change them and make them harder. Major fire code breaking in our house. There are several rooms his included where the door locks from the outside so that he can be locked safely in his bedroom for the night and even then my ears are always perked "just in case" he were to get out of bed.....wander downstairs....and out the front door which has major locks on it! We have learned that there isn't any lock that can keep him out (or in). He has figured them all out, they just delay him so that I have time to get to him.

Levi has been drawn to certain things for stimulation. Beings as this is our first experience with a child with disabilities and on the autistic spectrum we've had to learn as we go and did not realize why he would do certain things and then when we found out were mortified. Example: most children carry around a blanket or stuffed animal. Levi would carry around the cord to my electric frying pan. We did not realize that he would shock himself from time to time to help stimulate himself and make himself feel "normal". He would also walk up to a wall and start banging his forehead on it. Water has always been a huge draw for Levi. Big stimulator! Because I have a fridge with a water spout on it my kitchen floor was always covered in water. I couldn't keep him away from it. After awhile we found a compromise. I would open the dishwasher and let him get water from the fridge and pour it into the dishwasher door which would then drain into the dishwasher. Now he pulls up a chair to the sink and plays with the water in it. He likes the sprayer though so we still have a kitchen covered in water from time to time.

Through therapists we learned to swing Levi and other therapeutic activities. Jumping and climbing. We bought him a little trampoline and bought expensive swings that hang in doorways. Before going down for naps or bed he swings for fifteen minutes. It needs to be the front to back motion. Now that he is older he rides his bike to help stimulate and he rides everyday for hours. He loves his bike. His dog also helps stimulate.

A lot in my life came to a hold when Levi came and even more as he became mobile. I could no longer sew or do the hobbies I'd been used to. Levi has always mimicked everything he sees. The second I would turn my back he would grab the scissors. It felt like he was drawn to anything you didn't want him to have. Anything dangerous. He would try to "help" cook and would open the oven. Now perhaps you understand why I have lived for those times when he is safely asleep in bed. I can not describe the level of being aware and on heightened alert I've had to be with Levi to keep him safe.

When Levi gets sick he shuts down. I do not know if it is because he spends every day of his life fighting and so when he becomes sick it is just too much. I do not know but he does and it scares me to death. He stops drinking, eating, etc. He just closes his eyes and lets himself fade away. The first time I realized this was when he was little and I was nursing him. He became sick and shut down. I continued to pump my milk and freeze it because he wouldn't nurse. In the middle of the night after this had been going on for some time I sat holding him and thought, "if he doesn't nurse in the morning I'll take him to the doctor's" and the thought immediately came to my mind, "if you wait until morning it will be too late". I started pumping fresh milk and grabbed my baby and with a syringe started to shove milk down his throat. After a bit he started to respond and like the starved baby that he was he started to gulp down the milk. I spent the rest of the night switching between my milk and electrolytes drop by drop until morning where I did then take him to the doctor. The doctor told me that yes, if I had waited Levi would likely have passed away from dehydration. The number one killer in babies. Once the organs start shutting down they can not restart them.

Food has been an issue with Levi as well. He wouldn't eat. I didn't realize this was part of the autistic behaviors but I would get so frustrated trying to feed Levi. He just wanted my milk and so I felt strongly that I needed to nurse him a lot longer than I did any of my other children. At this time I still didn't know what was wrong with my baby......just that I had an extra fussy baby that was developmentally delayed. We didn't get his real diagnosis until a couple of years ago. We lived with this huge dark doorway that housed a monster that we knew learked in that doorway but couldn't quite see it and no one else seemed to be able to. I wanted to scream, "there is something really really wrong with my baby". Why couldn't anyone tell me what it was! If I knew what it was I could deal with it but not to know what "it" was. How do you fight that? Maybe that was why I fought so hard for his dog. Because at least I felt like I was "doing" something. Who knows.........I got so tired of people trying to convince me that Levi was normal. I wanted to scream and shake them. NO HE ISN'T! SOMETHING IS TERRIBLY WRONG!

We've learned a lot over the few years we've had Levi. Things have changed a little. He eats now and he doesn't have the melt downs he used to have. He doesn't have the anger and frustration as often. There was awhile there that I held the terror in my heart that because he was so violent would we have to place him in special care? My heart was ripped in half when that thought occurred to me one day. I told Brian I'd rather he die than to put him somewhere other than in my own home. Levi is such a big boy and being only about two to three mentally but in a big solid body has been murder on me physically. He still wants to be carried sometimes when he is tired. Walking a long ways is hard for him. Which is funny considering how many hours he'll ride his bike. When he has his attacks because he can't move, while he is throwing up I have to hold his upper body and head up. When he has a meltdown I have to physically restrain him so he won't hurt himself. Thankfully he is doing much better. Before we were having meltdowns several times a day. Not because he is naughty. My poor baby can't help it. He doesn't feel right. He doesn't understand and he can't communicate to me what is wrong so I can make it better. The hours the two of us have sat sweating wrestling while he has screamed and cried thrashing his body around as I have held him trying to keep him safe.

Levi doesn't understand danger. Another reason he can't be left alone. He is getting better about boundaries and staying out of the street but he doesn't understand he needs to stay out because it is dangerous so he doesn't always adhere. Something will distract him and off he'll go.

Levi has awesome brothers and sisters. They have all stepped up to the plate helping me to take care of Levi. They all feel a protectiveness towards Levi. There have been many frustrating times for them as Levi has not been an easy sibling to live with but honestly I can't think of too many times where the kids haven't been able to see beyond the "monster" and deal with the situation with kindness. There have been times where they've saved his life. One day we were at the Arches down in Moab. Kirsten was climbing over some rocks and Levi took off after her and started to climb but on a side that had a cliff. As he was climbing he lost his balance and started to fall backwards. It was one of those moments where Brian and I couldn't get there fast enough. He had taken off without us realizing it and when we noticed seconds later he was out of our reach. Kirsten who was only about five herself reached out and grabbed him yanking him back against the rocks until we could get there. I can't count the many times that situations like this have occurred and the children have reacted like super human adults yanking Levi back to safety. Levi has an army of angels watching over him in the form of his siblings.

We've had to learn to be creative in dealing with Levi because he does not understand reasoning. Levi, put down that knife it is dangerous..........what does that mean? Levi, do you want to put down the knife or take a time out (okay, I'd probably spank at this point but you get the idea) Levi will hold the knife because he doesn't understand the "choice". He is actually getting better at this but it has taken a long time.

I guess my purpose in this post is for that person out there who is where I've been I understand. No one can understand the exhaustion because it can't be explained how cued into these children you have to be. You are never resting. Your ears are always following them where ever they are. If you can't follow them with your eyes because you may have your back turned cooking or something your ears are still literally following that child and you continually glance over your shoulder watching because the one time you let your guard down they run up some rocks and lose their balance.

Now, I have to end this on a funny note because it is too somber of a read but there are some fantastically funny times and good experiences that go along with this. Remember my pendulum post? With the bad it swings just as far to the other side.

At dinnertime having seven children six of which are boys it feels like these animals come running, plop themselves down, and start snarfing from the trough. I have been trying to teach them some manners and finally Brian suggested we try working on one thing and then when they've master that then we can move onto another. We were having spaghetti which is a hard meal to eat gracefully I admit but when their faces are inches from their plates and their arms wrapped around their plates as if they are guarding it from each other barely lifting their eyes while mumbling conversation through the tentacles of spaghetti hanging from their mouths.....it is a bit much so I told the kids, "manners kids" (we're working on keeping your left hand in your lap and sitting up straight) and Levi yells out "YA, MANNURS". I busted out laughing because he is yelling at them manners when he has both arms around his plate and spaghetti hanging from his mouth and he spits spaghetti as he is yelling at his siblings to remember their "mannurs". He is a riot!