Andy has been having a great time at school. He really likes everyone there, and has been really happy to be there. I am able to drop him off at school and go run errands on my own, it has been nice. I've been praying for him to have a better time lately, and I've been feeling better as well. He's not always happy, but he's been having good days here and there, which is a nice change.
I recently tried to wean Andy off of his Risperdal, but it went very badly on the days that he got no meds at all. So, I quickly started him back on the Risperdal at .25ml a day. When I went back up to anything over .30ml he was way too sleepy at school. We are sticking at .25ml a day, and I don't think I'll try to take him off again until the summer. I'm too nervous for him to have terrible days at school, I think summer break would be a safer time to try it. I was curious to see how he would do without getting the meds, and it didn't seem to be good. I wasn't patient to give it more than a couple days, so for now he will stay on the meds.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Friday, November 16, 2012
Thursday, November 8, 2012
Kids are kids
Parenting stinks, no matter what. Disabilities or not. I have one of each, my daughter is totally normal. She really frustrates me. She's five years old though, she isn't going to think and act like an adult. There are times when I can't decide who is harder to parent. They are both SO tough.
Lately, I'm realizing that Andy's disability isn't always to blame when times are tough. He's just a kid, and he is going to have bad days and act up, just like other kids. So back to, parenting just stinks. I need more time each week, when I don't have to parent my kids. I'm finally starting to get it.
I've been able to leave my son at school, now that he knows everyone, and everyone has gotten to know him. I first started by leaving him there for the first hour alone, and noticing that he was quite happy when I returned. He was in a good mood, and hadn't been crying. We hit a turning point last week, when I would start to feed him his snack at school, he would start crying and lose it. It seemed like he was trying to tell me, "just take me home, I'm tired".
So, I asked the teacher if they could feed him snack, and see if he freaks out. They've done it twice now, and he's fine. As soon as I come back into the classroom, no matter what time, when he hears my voice he gets whiney and soon cries. If I return a little early, I stay quiet and don't let him see me until it is almost time to take him home. This is working so far.
It gives me time to run errands without kids, or go visit with people. Time that I don't have to be a parent. I do still feel like I should be there checking on Andy, but it just makes things worse. Now that I trust they are doing what I would do with him, and they know about some of his triggers, I feel better about having him there without me.
Lately, I'm realizing that Andy's disability isn't always to blame when times are tough. He's just a kid, and he is going to have bad days and act up, just like other kids. So back to, parenting just stinks. I need more time each week, when I don't have to parent my kids. I'm finally starting to get it.
I've been able to leave my son at school, now that he knows everyone, and everyone has gotten to know him. I first started by leaving him there for the first hour alone, and noticing that he was quite happy when I returned. He was in a good mood, and hadn't been crying. We hit a turning point last week, when I would start to feed him his snack at school, he would start crying and lose it. It seemed like he was trying to tell me, "just take me home, I'm tired".
So, I asked the teacher if they could feed him snack, and see if he freaks out. They've done it twice now, and he's fine. As soon as I come back into the classroom, no matter what time, when he hears my voice he gets whiney and soon cries. If I return a little early, I stay quiet and don't let him see me until it is almost time to take him home. This is working so far.
It gives me time to run errands without kids, or go visit with people. Time that I don't have to be a parent. I do still feel like I should be there checking on Andy, but it just makes things worse. Now that I trust they are doing what I would do with him, and they know about some of his triggers, I feel better about having him there without me.
Sunday, November 4, 2012
Feeling better
The sadness patch seems to be over now. I put my mind on the back burner and got all my laundry done, and cleaned up the house. I was able to get everything done while Andy stayed busy playing with my daughter, or watching TV. Now that the house is in order, I feel it will be easier to face the week, and getting the kids ready for school should be easier.
I am happy with my life right now, and accept my current motherhood duties, although I still get sad about the scenario. It doesn't mean I hate it, but I think it is okay to occasionally be down, and just let myself feel the feelings that come to me. I know there are people that have it much worse than me, so I don't want to seem unthankful for everything that I have.
Andy's developmental delays redefine every single situation for all of us. We have the power to choose to be in situations or not to participate in things that we don't feel comfortable with. We have to make things more simple, and I find myself savoring small moments in our lives.
I am happy with my life right now, and accept my current motherhood duties, although I still get sad about the scenario. It doesn't mean I hate it, but I think it is okay to occasionally be down, and just let myself feel the feelings that come to me. I know there are people that have it much worse than me, so I don't want to seem unthankful for everything that I have.
Andy's developmental delays redefine every single situation for all of us. We have the power to choose to be in situations or not to participate in things that we don't feel comfortable with. We have to make things more simple, and I find myself savoring small moments in our lives.
Thursday, November 1, 2012
The Good, The Bad and The Ugly
I've been seeing way too much of the ugly lately from Andy, and my daughter! Oh, I am trying so hard to stay sane! My son cried for an hour at school today, then cried all the way home for 40 minutes. It is so mind numbing. I can't even focus on anything else. I'm just trying to keep my sanity here. I kept thinking, "now I understand that song 'I wanna be sedated'". I'd love to be sedated for a few days, just put me out of my misery, my God, I'm hanging on by a string. I couldn't do anything, after putting my son down for his nap, but sit on the couch and fall asleep. Despite all the laundry and cleaning that needs to get done. I need a break, Lord help me! Just WAY too much ugly lately. Enough already, I've had my fair share. Now I can go to bed.
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