Monday, June 8, 2015

My life with Autism, FAS and FDS

I obviously am not much of a blogger. But something has been on my mind quite a bit lately, and I think someone even suggested to me, that I should keep a record about my days living with Autism, Fetal Alcohol Syndrome, and Fetal Drug Syndrome. I posted, quite some time ago, of how we got our sweet boy thru foster care. He is a joy in our lives & we love him so very much. But it is not easy. Somedays, not. at. all.
To keep this post from being way too long, I will just post about yesterday. Some days are really really good, and some days are not. Some are somewhere in between. I am still trying to decide what yesterday was.
It started out pretty good. John was gone, so J was sleeping with me. It is a comfort to him (and to me), and it is much easier. When John is gone at night there is a lot of stressing and worrying and little sleep. I like my sleep. By letting him sleep upstairs with me, we both generally get a good nights sleep and I am not running up and down stairs all night long.
So, even tho he slept well all night, he still woke up at 6 am. I convinced him to go play out in the living room quietly so I could catch a few more zzzzz's. At 7 I woke up and found him playing with his legos and watching a movie. I proceeded to get things done to get ready for church. While I showered, he found his church clothes, got dressed, and got his church bag ready. I was thinking to myself, 'what a great morning. Things are going pretty good.' I wanted to get to church a little early to make sure he was prepared to pass the sacrament. It was only his second time. With John not there to help him, I needed to talk to one of the other boys to make sure they could keep watch and help him if he needed it. We didn't make it quite as early as I had hoped, but still a couple minutes before start time. I got him settled where he needed to be and went back to sit down. Not long after he came back wanting his church bag. I told him he couldn't have it up there where he was sitting, that he would have to wait until he was done. Then I opened up the bag. Instead of the usual paper and pencils to draw with, that we have been trying to move toward, there were two hero factories, and a big bag of sunflower seeds. That's what I get for not checking the bag before we left the house. Since I wouldn't let him have the bag, he got upset and would not go sit back up with the other deacons. He was mad and was not going to do what he was suppose to. I finally just ignored him and let him think about it for a minute or two. He decided he would go back up. We made it thru the sacrament with relatively few incidents.
During Sacrament Meeting, he usually sits on the floor facing the bench, to play with his legos, or draw. Yes, I know. He is 12. He should be sitting up on the bench by now for the whole 70 minutes. But hey! We have got him sitting up during the sacrament, and especially now that he is passing, so I feel we've accomplished much. Baby steps!
About 10 minutes before closing time, he decides he is tired and tries to lay down, under the benches. 'No. You are too big for that.' (he is 5'8" tall and 190 lbs). That mildly upsets him, but we manage to get him sitting back up. (KC and Jordan had come up for the weekend, so they were sitting with us, helping me out.)
Once Sacrament Meeting was over, he knew he must go to his 'old' class. That is the Primary class he has been going to all year. Until January, he will continue to go to this class. Then he will move up to a Sunday School class. After the Primary class, instead of going into Primary for Singing and Sharing Time, he is suppose to go to Priesthood with the other Young Men. I had been asked to sub in Primary, leading the music, and John was not here to coach him to go to Deacons Quorum, so I just told him he could come into Singing Time with me. I THOUGHT he would be good. Nope! First, while they were waiting out in the hall for class change, he went into the Young Women's room, licked his hand, and rubbed it all over the light switch. One of his babysitters saw him do it and chased after him, but he got away from her. She told me what he had done. Sigh!
Next, once in the Primary room, he would keep calling out to me from the back of the room. He was bored. He wanted to play on my phone. He wanted to go out in the hall. He wanted to come sit up front by me, etc. Thankfully, I didn't have a whole lot of time for singing time, got it done, told the pianist I was leaving, and asked the Primary President to please lead the closing song for me. And we left! Still, not a really bad day, so far, but he was getting the idea that I wasn't very happy with how he was acting.
For the most part, the rest of the afternoon wasn't too bad. He played pretty good, unloaded the dishwasher for me without too much complaining, because Jordan helped him, and wasn't too sassy and rude to me when talking to me. I was still counting my blessings.
After KC and Jordan left to go back to Utah, he decided he wanted to go for a bike ride. He wanted to ride down to the subdivision and back (about 3/4's of a mile one way). I thought he would be ok so I was going to let him, but when I told him he could NOT go into the subdivision, that he had to just turn around and come back, he decided he didn't want to. (I am figuring out his motives for wanting to do things. He wanted to go find friends to play with. Nope! Not happening without permission first.) He finally talked me into going for a walk, so he could ride. I needed some motivation so off we went. I am trying to get back into running, so it was good for me to get out & go.
On the way back home, he rode ahead. He was doing good staying on his side of the road and not all over it, until a pickup came up behind him. Thankfully she was still a ways behind him when he heard her coming and darted over to the other side of the road. In his logical mind, he needed to be on the other side of the road so he wouldn't be in her way. After she passed by him, he crossed back over tho where he was suppose to be. I am so glad she wasn't closer to him. when he darted across. When I got home I had to go over 'the rules' again with him, that he stays on the side of the road. The cars will go out around him. That is a constant with him, going over the rules. The same ones, over and over and over and over again. We don't remember well.
Still thinking the day was a pretty good one.
While on the phone to my sister, he asked if he could jump on the trampoline. Of course! I knew eventually water would be involved, because he thinks that is the only way to jump on the tramp. That was ok too, but next thing I knew, he was standing at the door with soap all over him. I quickly got off the phone and started quizzing him about the soap. First, it was just on the tramp. Nope! Sorry, I'm not buying that one. Then it was just a little bit. Try again! You got that expensive bottle of body wash out of the shower didn't you? 'Yes.' And you used up the entire bottle didn't you? 'Yes.' Ugh! So much for the good day! I made him shower off with the sprinkler to get the worst of it off, then come into the shower for the rest. Yes, grass got tracked in clear thru the house, because I had just mowed the lawn the previous day. (The tub was filled with grass too).
The rest of the evening went pretty good, because he knew he had upset me & I wasn't happy. When bedtime came, I was able to get him into bed without too much incident, altho he kept stressing over when Dad was going to get home and why wouldn't he get to see him until morning. We finally got him to sleep, & I came upstairs to relax & wind down.
About an hour later I heard him cry out so I went down to see what was wrong. His head was hurting. We deal with that a lot. I thought we had them under control, but they've been starting up again. It doesn't happen until after he falls asleep. We have done a couple of all-night oximeter tests, testing his O2 stats while he is sleeping. Apparently, his sats are dropping at times, while he's asleep. I am wondering if this is causing the headaches.
Anyway, we got the oxygen started, but this one seemed to be a little worse. I don't know if that was the case, or he was just worrying about when Daddy would get home. Just when I would get him settled down, about 15 minutes later he would cry out again. Then, his 'heart started hurting'. It pains him in his chest in the vicinity of his heart. I tried everything. Oxygen, oils, Melatonin, rubbing his back, more oxygen, even taking him for a drive in the car at midnight, hoping to relax him enough that he could fall asleep. I think we managed to accomplish that goal about 1:30 this morning. I have no idea what is going on, and neither does the doctor.
So, that is just one day. Actually, not a really bad day, considering. There have been worse days. Puberty is rearing it's ugly head. He is beginning to act like a pre-teen, with the sassiness, and attitude, but with the mentality of only an 7-9 year old. Some things he is age-appropriate in, but most things, much more delayed. And did I mention the arguing? Oh, the arguing! I have already raised 4 teenagers. But you can reason with them, for the most part. This child? No. It doesn't happen! He argues with me. And argues with me! You know I just don't know anything. He does. No matter how many times I tell him to stop arguing, he will do it again. He sure is able to push buttons!
I don't write this to garner sympathy. I do it, I believe, to start keeping record of what happens daily. And, if it helps a few people understand what it is like living in our home, then maybe that accomplishes something too. I think it helps me, most of all, to put it down into words. That is my way of dealing with it I guess. I really don't mean to blab my problems to all the world. It is just me. I have to find a way to deal with the stress so I can be more of a benefit to him. His sensory level is super high. Even when I may not think I am stressed, he will sense it. So I try hard to stay as even keel as I can. I do my very best not to baby him. I am trying to teach him he has daily chores to do, to contribute to the family. I try to help him understand I am not here at his beck and call. If he wants me, he must come to where I am. We are trying to teach him good and proper manners when around others, and to be kind and respectful. But it's a process. Some days I think we are getting it, other days, not at all! It seems, lately, too, that his sensory overload button is stuck. Everything overstimulates him, and so much faster than usual! Just having his brother home, with his girlfriend, is overstimulating. Taking him to town is overstimulating. Going to church, with all the people there, in one building is overstimulating. I just keep hoping, and praying that this too will pass. That one day he will grow out of it, or learn how to control it. Just like I hope for all the other things that he may learn to control one day. It's the only way I make it thru, sometimes. Hope.
Oh yeah, one more addition to the post. I went into the use the back bathroom this morning. I don't go in there often, but just had cleaned it a couple of weeks ago. The floor didn't feel very clean. Yep! There was pee on the floor, dried, around the toilet, on the lid, on the back of the toilet, probably on the wall too. We aren't careful where we aim. But hey! At least I finally have him remembering to flush after he uses the toilet, most of the time. And he can finally wipe his own bottom after a bowel movement. That's progress. Right?

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