Monday, July 25, 2011

Three Mile Island

I wonder how long it will take for me to completely melt down.

I love my son to distraction, I'd die without him, but honestly doing this by myself, and knowing as little as I do about autism is hard. Some of my family think it's something you "grow out of". My mom is morbidly amused by my struggles. I have a kid in his terrible twos, who cannot communicate to me AT ALL what it is that he needs and wants. Not to mention, I'm like crack to him, if he doesn't have a good dose of his mama every hour, he practically becomes catatonic. I'm the type of person who needs an hour of peace every night. And sleep doesn't count.

My friend Lisa has offered to come and spend time with him a couple of times a week. Though it's terribly difficult for me to accept help from others (those who were supposed to help me just made me feel worthless for having needs), I know that if I don't take her up on her offer, I may do something I regret. My son is like a cheese grater to my nerves right now. And it's not his fault, he is doing what his little soul and brain compel him to do, I have to keep that in mind. But when I'm trying to take care of normal bodily functions in peace, or even take a bath, and I can't do that by myself because my mom feels that watching him for five minutes is raising him, and again, I am my son's gets hard.

I'm trying not to be bitter. I feel like coming back to my mom's house brought me full circle, only the circle was standing on its end, and I only went up to come back down. I told myself when I left here, I'd go into a shelter before I came back here. Well, Steven and I are family number 80. We were family number 93 last week. So at least there's progress there. Still, what is this house, but a gilded cage? Yes, there's money here, but money is as valuable to me as paper currency during the Second Coming. It's the support that's gold to me. I've learned to make do and be satisfied with very little's the things you can't buy that I hoard, because they come so few and far between.

My spirit is raw. I cannot concentrate on anything but my child when he's with me. If I don't keep constant vigil, he will be into something that is likely to kill him. There is no time to do anything other than read casually, and even that is sporadic. I used to be able to read a 600-page book in a day. School was a piece of cake. I need to go back to school. I only have two more years, and if I'm to be doing this by myself, I'm going to need a degree. Perhaps I'll double major. I want to keep my Christian Studies major, but now Early Childhood Education with an emphasis on Special Education is pulling me in that direction. Perhaps my child won't baffle me so much if I continue my studies through studying him.

Still, it's hard. Every time I smell that he's done #2, I pray that there's no poo on his fingers or elsewhere. I feel myself trying not to cry. I have to somehow overcome personality traits imbedded in me for years (I do not like to be touched when asleep...Steven needs to touch me at night for reassurance), so that my son doesn't feel any more lost than he probably already does.

I'm trying not to resent his father, but at least once a day I hate that man. Did I deserve to be lied to, to have every holiday ruined because someone else mistreated him? Did I deserve the ire of his mother, who seems to think I poured the alcohol down his throat? Did I deserve to have my life threatened? Do I deserve the daily contact, the inappropriate comments, the denial on his part? In his eyes, it's like none of that ever happened. There are no holes in the doors and walls of our old apartment. My son has never been witness to any fights. The reason why we split in his eyes is because we didn't have enough money to stay on our apartment. Perhaps had I not been as stressed, I would have been able to work. There were times when my health allowed me, but more often than not the stress overwhelmed me, and I remained bedridden. That's not an option now.

Still, had I stuck to what I knew was right, I wouldn't be in this situation....but neither would I have my son, and that child is honestly what's kept me alive the past 3.5 years. God took my mess and fashioned a miracle out of it. I would not be here if it were not for him. My family walked out on me for good when I got sick. With each new development in the saga that is our family dysfunction, I see more and more why they hate me. My son gave me love. He gave me a whole lot of need at first, but when I met that need, he looked at me one day and gave me love. You can't replace that. Every time I go into the hospital I worry about him. I keep avoiding the MRI I know I need to get, because there probably is a lesion on my brain....obviously not cancerous, but 2 weeks in the hospital....who would take care of him? No one knows him like I do, no one has tried. They can't feed him, they don't know his cues, and they definitely won't put up with being up half the night changing and soothing him. Perhaps Lisa would, but that day is going to have to be a long way off for now. I'll stick with the silent seizures. But if a Grand Mal one hits, I have no choice. It just sucks that the only hospital that can help me is 20 miles from my child.

The past two weeks have been especially hard, and I sadly admit I have not been the best Mom I could be. My patience has holes in it, and my son keeps sticking his fingers in them. I wrote a blog weeks ago that compared my situation to that in Matthew 25, and my son was "the least of these". I'm ashamed to say I have not been very kind to my Savior as of late. I just feel so lonely, so isolated. My family is not there, the two women I know who have raised kids on the Autism Spectrum live a ways away. My brother is the only relative I speak to candidly, and even he doesn't understand. Steven's father looks at him like he's a trophy. Many people think my kid is a toy, because he's so cute. He does this Puss In Boots thing with his eyes, they get big and change color when he's whining to get his way. I've noticed that of late. It's kryptonite to me.

Lord, take the scales off my eyes before I turn into my mother. I got beaten like a slave for things I could not help. My son can't help how he sees the world, and that will always be, no matter how tired or sick I may be. Not all of his antics are intentional. And he does see some value in me, even though I feel like the Abominable Snow Woman right about now. He just came in and gave me a kiss. Progress in and of itself from a child who used to not notice the presence of other people.

Somehow, I've got to find a way to gain peace in this storm. For his sake more than mine.

Now it's time to put him to bed. He just found another rubber tip to the door stoppers in the house, and was eating it. I think he's trying to tell me he's sleepy. :-) Heaven help me.