Monday, March 15, 2010


Emma had a rough day today, after 5 years is still breaks my heart. She has been doing really well lately, relatively speaking. Her behavior has been more workable, meaning she responds to my behavior strategies when a problem comes up. Her strength is better too, and I have felt myself relaxing more when she starts walking down the stairs or breaks into a run. Within the last week, however, I have had more and more trouble with her behavior. Each day has been getting worse, and today it was like the dam burst. She just wasn't herself today, I wish I understood what triggers this in her. I tried all of the different techniques I've learned and got nowhere with her. After just a few hours she reached a point where I had one last resort. We call it couch sitting and she hates it. It's basically a sitting technique that will help her feel safe enough to snap out of it, it always works. The old saying "it gets worse before it gets better", applies here. Like I said, she hates couch sitting and at times it will trigger the worst of her behavior problems. It got downright scary for a minute while I struggled to just keep her on my lap. She was hitting and crying and trying to bite me. After I was able to hold her in a position where she couldn't hurt herself or me, she started screaming for her "daddy" over and over and over. This went on for a long time, at least 5 minutes and I cried the whole time. To me, being consistent with discipline is just about one of the hardest responsibilities in raising a child with special needs. It's impossible to describe how draining it is for me. The time and patience it demands will leave me feeling weak and shaky. After 15 minutes or so she snapped out of it, almost instantly. It was like she wasn't really there for a few minutes and then all of sudden she came back. This was enough to do us both in for the day, but 10 minutes later she started to go down the stairs and fell the entire way down. This hasn't happened for a really long time, it scared me to death. I guess I should never get too comfortable with her on the stairs, no matter how well she seems to be doing it. Luckily, she only cut her mouth in the fall. I'm so grateful that she's never gotten seriously injured in a fall like this, especially with a neck condition. I find myself wondering how she could have setbacks in more than one area within such a short time. After the way this upset me, I have not been surprised to see more behavior issues in her throughout the day. Not as bad as this morning, thankfully. I'm so glad she is sleeping now and can rest from these issues that she really has no control over. Today, it was hard being the mom-especially when I love her as much as I do.

Sunday, March 7, 2010


Potty training, it's happening. A week or so ago, Emma came home with a note from school. It said, "Emma went potty on the toilet". Jumping up and down with added screaming may or may not have happened! I have to say I'm a little shocked that it actually happened. We have been introducing it to her for most of the year, with zero progress. I've been pleased that she showed any interest at all, thanks to her younger sister Abby who provides constant competition. I love that her school offered support in this area, it obviously made a difference. Since the note, Em has gone potty several times at home. The latest was initiated by her and happened without the water running to help her along. I've decided to just let this ride and take it one day at a time, without having a goal in sight. I know this will more than likely take awhile to completely figure out. To be starting at age 5 is just awesome, starting is good enough for me.

Surviving winter is hopefully almost over. Emma has missed quite a bit of school this year, almost all because of illnesses going around. This year has seemed to follow the pattern of alternating good and bad winters every other year. It has been "bad" because she has been constantly sick. No "real" complaints here though, since we are coming up on a year of NO hospitalizations. I think we'll throw a party.

Elopement. This is something I am trying to learn about. A great explanation on this can be found here. It basically means, running away. Although, it is far more serious than kids in general running and hiding from their parents. We've seen this in Emma for several years now, putting a name to it has helped. I guess it validates the changes we have come to accept. Things like, always keeping a watchful eye on her-even when you are smack dab in the middle of a conversation. I wonder what it's like for people to talk to us, trust me my eyes are rarely focusing on anything but Emma. Not to mention, interrupting every minute or so to either find her or check on her. I see it a lot when interrupting her mind set, she does not like to be messed with. Her way of coping with that is elopement, she'll run away or hide. More than once it has been a little scary. She knows how to open doors now and that only adds to the problem. This is just one of the many things that make me want to lock her up in a safe bubble as a way of protecting her. Life just doesn't work that way, so we will take this problem in stride and manage it the best we can. Luckily, it isn't severe-yet.

p.s. She dances ALL the time. It makes me smile........