Thursday, May 7, 2009

Bluey Blues

If you have not caught on by now, I tend to not write much when we are going through a rough patch. With all the drama in the world I figure the last thing anyone needs is to come here and listen to me rant and rave. I certainly don't want to make anyone more depressed.

This is a funny neurological disorder. It is tricky and sneaky and just when you think... wow... things are looking up.... you end up two steps backwards, deflated and running out of patience.

So, since Easter, we have been dealing with a few things. Carson is much more intense than usual and let me tell you, autism makes our kids pretty damn intense to being with. So, this additional stress is just about kicking his and our butt!

With this intensity we have also found a ton of new emotions to deal with. Yes, a huge blessing! (A year ago, Carson was fairly indifferent.) But these emotions can be challenging when they all seem to come at once.

Carson seems to be realizing appropriate and inappropriate behavior more and more. The bad news is, his low impulse control tends to have him act inappropriately before his conscious can catch up and stop him. So, when he is told that he made a "bad choice" we now have hysterical crying and negative self talk. Not fun!

There have been a few times these past few weeks that I have been laying down with him in bed and he will just start crying and saying things like - "nobody is my friend", "nobody wants to play with me", "I am a bad boy", "I hurt... whoever he might have had a run in with that day".

This kills me. Watching my kid cry and be upset, like any mom, kills me. I am not sure where it is all coming from. We certainly don't tell him he is bad or anything negative about him personally. We always focus on the behavior and the choice. I know the same things are practiced at school and at his various therapies.

To add to it, we are back to a crappy sleep schedule. He does now fall back to sleep but wakes up at a minimum 5 times per night. I know this since, I sleep with him and in turn am up also at least 5 times per night. He seems tired and cranky during the day and I have no doubt that this interrupted sleep pattern is affecting his mood and behavior.

I also have to admit that I think he is picking up on our (Jay and my) stress. These past few weeks have been crazy. I wont go into my run in with the school psychologist but for those that know the story, know that I cried for almost two whole days. We have both also had personal stress to add, not to mention the lack of job security for Jay.

Good times here at our house!!! Come on over!!! I am convinced, it is the least relaxing place to be!!

I hope you sense my sarcasm. I know that with all this we are still tremendously blessed. I know that millions would trade with us in a heartbeat. I do get all that.

It is just there are times that I still get furious. I still wonder what life would be like to be a "normal" family. What it would be like to just hang out with my kids all day instead of spending all our time at therapies and doctor appointments. I wonder what it feels like to go to kindergarten registration and not have to meet 5 different people who will be working with our kid. Only to know that, hey, mainstream just might not work out. Hell, I wonder what it would be like to go out to eat and my kid can eat whatever he wants.

I am sorry if all that sounds selfish but I am just being honest. Now, you know why I have avoided posting. Aren't you glad you stopped by?

Yes, I focus on the good. Yes, we do all of this because we want to and the diet and therapies are elective. We know they work.

I just wish after three years, this still did not hurt so much. I wonder if there will ever be a day where I feel like I can just breath again. I feel like we have been running a marathon for three years and I can see the finish line but...we....just.... can't.... seem.... to...reach.. it!

6 comments:

Journey To Eden said...

Wish I had the words to comfort you. Just know that I am there for you all no matter what. You are amazing parents and Carson is an amazing child. You WILL get through this.

Anonymous said...

I'm always glad I've stopped by to read about your thoughts. Yes, you two aren't normal parents. You're extraordinary parents. No need to feel guilty for getting tired and wishing it were easier from time to time.
Love you, ~Dar

Tencza Family said...

No need to apologize! Your feelings are just that, yours. You are entitled to them and cannot always control them. You know you are doing everything you can for Carson and so much more. Sometimes I wonder if the kids' parents I work with at school have gone through as much as you have and if it would have made a difference if they had. Keep up the good work!

Jay and Emily said...

Thank you all for your supportive comments. Nobody wants to feel like they are failing and right now, I feel very defeated. Thank you for building me up. It helps to make me feel "normal". Love you all - E

nickoleg said...
This comment has been removed by the author.
nickoleg said...

wanted to tell you both that I truly am blessed that I found you guys and mesh so well with you all, and I hope you feel the same way. I Love spending time with Carson and your family. I learn something new about Carson everyday. He definitely brings out the child in me on a daily basis. I often find myself brainstorming and thinking about how I can help Carson or find activities for us to do that he will enjoy that will also keep his attention. He and Fin are very sweet and so much fun to be around. Emily, I have enjoyed getting to know you more and more. You are such a kind,understanding,loving, funny person. Hang in there Emily and Jay! Things will get better and easier for you. I have faith.