So far, as I've been telling the story, I've concentrated on the observations we made with Amanda. I haven't touched on the personal aspects. I promised an open and honest blog so here it goes. I apologize to anyone reading this if anything I say in this post upsets you, embarrasses you, or offends you. But it's part of the story.
My personal struggles are not easy for me to talk about. I'm a happy go lucky person and don't like to speak of my problems, or my struggles. I've built walls around my heart as a self defense mechanism. I do not openly trust anyone, and when I first meet you, before I know you, I don't let you in. Even after knowing me for a while, chances are, you are still not 100% in. For the past 18 years, life has been about my children, and for the past 15 years, a big chunk of my life has been about learning about and dealing with autism. Talking about what was going on with me is not fun, but I'm going to lay it all out.
I mentioned being separated in an earlier post. From the time I was three months pregnant until Amanda was born I was a single expectant mother. It was me, my Mom, and Jake. I received no child support, and for a long duration of my pregnancy I was unable to work. We lived off Mom's small retirement benefit from my Dad's army retirement. Dad had passed away not even a year ago, and Mom was not old enough to draw her social security benefits. We managed, but the stress could not have been good on Amanda during the pregnancy. I blame myself for that. I wonder "what if" I hadn't been so stressed while I was pregnant. Would I still have gone into pre-term labor? Would I have needed all those medications during the pregnancy? Did those medications affect her? Did I cause this? I don't know, and I still ask myself those questions. I always will. After Amanda was born, her father wanted to come home, and I let him. I thought it was the right thing to do. I had two children, and they deserved a family.
When things got questionable about Amanda's development, Mom and I were the ones who took care of it. I took her to therapy alone, and I did her home therapy alone. Although I was married, and my mom was around, I felt very alone in all of this. After all, I was the one teaching this child how to function. It was "too hard" for her father to go to therapy. Ford moved us to Louisville, KY. I had already made my mind up for divorce, but allowed myself to be talked into moving. A fresh start. After living in Kentucky for six months, I finally decided that I loved myself and my kids enough to leave this unhealthy relationship. So I did. I moved back to Ohio with my two children, on the words of my ex-husband "Good luck finding someone to take care of you and your fucking retarded daughter". Sorry about the language, but hey, I warned you.
So I'm a divorced mother of a 5 year old boy, and 3 year old Autistic daughter. Life was great (enter sarcasm here). I had a chip on my shoulder the size of the Rock of Gibralter. Again, it was Mom, Jake, me, and Amanda. Thank God for Mom. During this time, she was my rock. I still don't think she knows this. As I mentioned, I'm happy go lucky, and won't let you in. So, new beginnings, and trying to figure out this puzzle we call Autism. I dove into research. I researched many many hours a day. I concentrated on my kids, work, and research. I would get up, get Jake to school, go to work till 7 PM, come home, have some family time, tuck the kids into bed, and research. I probably was not a likable person. I didn't care. I had my support group of some great friends and Mom. That's all I needed.
Then I met Dan. Poor guy. LOL. When I met him, I honestly thought that the only thing men were good for was sucking up my oxygen if I was standing next to them. I had no place in my heart or in my life for a man. I had built a wall so close around my soul, that no one could get in, and I honestly could not see out. Please don't get me wrong, this wall was not only from my first marriage. It was from the scowls from people for something 'strange" Amanda would do while we were out. It was from nasty remarks, sideways glances, and from feeling so alone in what was now my Autistic world. Inside my wall was me, my kids, and Autism. There simply wasn't room for anyone else. Except Dan.
We started hanging out as friends, and I actually had some fun! I had forgotten what that was. See, between working and appointments, there was no room for fun. Dan knew what I was going through, yet he didn't look at me like I was from another planet. More importantly, he didn't look at Amanda like that. My wall started to crumble a little, and that scared me to death. It would crumble, and I would promptly rebuild it. I could tell I was falling in love with him, and I thought he felt the same way about me. So I had to have a talk with him and nip this in the bud. After all, he was sucking up my oxygen, remember. So I told him "Dan, I don't know where you expect this relationship to go. But if your future includes getting married, and kids of your own, I am not the girl for you." Do you know what he said??? He simply said "Ok". OK?? Really? Who says that after such an intense statement from me? O.K??????
Ok....so he hung around. He started going to appointments with me for Amanda. Someone was actually wanting to learn about this horrible disorder that had taken over my life. He not only wanted to learn about it, but he started taking some of the burden of it. He listened, he learned, he took it all in. He went to MFE meetings, IEP meetings, doctor's appointments. He obviously loved this little girl too. Mom and I finally had some understanding, and some help. It felt good, and I loved it. Yes, I loved it. And I loved him. More importantly, he loved Jake and Amanda.
One night, we had put the kids to bed and Mom, Dan, and I were sitting downstairs. I heard Amanda upstairs. She wasn't asleep. We had to put a gate up at her door so she wouldn't get out of the house at night. You see, we had a little escape artist. This is typical with Autism. I have some funny stories about that, but I digress......Amanda was awake. I went up to check on her and Dan came with me. What I saw mortified and embarrassed me more than I have ever been embarrassed before. She pooped. Not only did she poop, she took it out of her diaper, and smeared it EVERYWHERE! Her bed, her walls, her floor, her hair, her face, the door knob....EVERYWHERE. I thought Dan was going to high tail it out of there. He didn't. I took Amanda in for a bath, and he and Mom cleaned up the room. We laugh about that now. Can you believe it? We LAUGH about that now.
These personal experiences are not easy for me to write about, but they are part of this open and honest look at our world with Autism. In 2001, Dan and I got married. Amanda was our flower girl. My quest for a cure for Autism continues, but now I have a team. Yeah, remember when I said, no marriage, no children of your own to Dan? Enter MacKenzie in 2002 and Zachary in 2005. Big transitions are not easy for Autistic kids, and this was not different for Amanda..
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