Wednesday, March 27, 2013

Nothing is ever easy.

It's been quite a while since I've unloaded my brain on all of you wonderful readers. I want to say that I am continually amazed that people actually want to hear what I have to say. I love getting feedback, too. It gives me that warm and fuzzy feeling inside, that has been missing for so long. For years, I felt like I was just 'here', that the only purpose I had was to be a mother and a wife. Don't get me wrong, those are both amazing jobs, I love them and wouldn't change my life for anything. But I always felt like there was something missing. There was a hole in my soul, and I had no idea how to fill it. When I was able to work, it was a poorly paying job that didn't require a lot of thinking. And when I hit the stage where I was no longer able to work, I lost something.  Having 2 kids with disabilities caused me to lose most of my friends, and we've never had a lot of outside support anyway. But it was like I lost my window to the world. I have a college degree that I've never used. I had just spent the last 15+ years working in 2 dead end jobs. But now that I have all of you, I feel a sense of something...I haven't figured out what that feeling is yet, but I like it! So thank you all for being part of my story, whether you know us or not. You are part of the reason I write.

I've really been struggling the past couple of weeks. It seems like we are constantly taking two steps forward and one step back. Well, sometimes its more like three steps back, but I'm going to stop counting. What matters is that we continue to move forward. Jordan, while I love him with all my heart, continues to frustrate me with his behavior. I have gotten his major tantrums down to a reasonable level but the anger is still there. He is tolerating his brother more, but still gets very angry about his presence. I have talked with his BSC (behavior specialist consultant) and we think that these behaviors are not from anger, but from his being unable to control the situation. You may remember me saying that he has OCD and a tic disorder. His OCD is not like what you typically hear about- people that wash their hands 400 times a day, or have to flip the light switch 30 times before they enter the room. His is more of the perseverative behaviors that cannot be controlled. And given that he cannot express his frustrations in an acceptable way, he tantrums. And when he is upset, the tics get so much more pronounced. We see his psych/neuro next Friday, and I'm hoping she will be willing to try a medication change. It's going to be ugly, he's been on his current me for 10 years. Am I looking forward to the withdrawal and behavioral repercussions? Oh, hell no. But is it worth it, if it will help him? Abso-freaking-lutely.

Brett is starting to show improvements from his recent medication increase, and his new behavior plan continues to work. Though I'm already stressing myself out over his upcoming transition to high school. He has the best teacher right now. Ever. In the fall, he will be moving to the high school (gasp). A new school. A new teacher. New peers. New inclusion teachers. New schedule. But when I asked for an aide to start out with him, to help ease his nerves and anxiety, I was brushed off. I will be the first person to tell you how smart Brett is, and many people will agree with me. He is social, which is not common in people with Autism. And because of his high functioning level, I feel that people are over estimating him. He has problems. He has issues. Severe ones. By ignoring them, it is just making things even harder on him.  Looks like I have another fight on my play card. Good thing we never give up. And I'm glad that Brett reminds me of that at least once a day.

Last week at soccer, Jordan's regular coach was there. We hadn't seen Eric in 2 years, he was unable to participate last season. But something amazing happened. Jordan smiled at the sight of him. And Eric ran over to see Jordan as soon as we walked in the gym.  He was so excited to be back, and asked if he could work with Jordan again. OK. Nobody EVER asks to work with Jordan. and nobody EVER asks to work with him AGAIN!!! I might have teared up, but  I think I did a pretty good job of hiding it. Jordan spent the next hour and a half shooting hoops with his buddy, and smiling and laughing. Words can't even explain how I felt that night. I wonder if I could adopt Eric...

My life, my husband's life, and certainly my kids life are daily struggles. Sometimes I go days without leaving the house. When I can't remember the last time I did something by myself...yikes. But its our life. It's what we were given, and it's what we'll do. We might complain every now and then, but that's human.  There is nothing we can do about it, we have to accept what we have. We are constantly trying to make things easier. Not for us, for the boys. It's hard work, but nothing is ever easy. And being Jordan and Brett's mother has made me into the person I am today. I can say, with all honesty, that I love my life.

The problem I've been struggling with so much lately, well...I see and hear so many people bitching about how much their life sucks, and how hard they have it. Really? Really?! Most of you have a job, that pays you money. You have weekends and evenings off. You are generally healthy. You have friends and family. You can take vacations, sometimes by yourself. Or with your spouse/significant other. Yes, bad things might happen to you. But they can, most often, be fixed. So, with all due respect, suck it up. My children struggle with things that you couldn't even begin to imagine, on a daily basis. And they can't be fixed. They will continue to struggle forever. Your car might break down, you might have to work an extra couple of hours, you might even have to bring work home. Your teenager might go over his/her cell phone limit. Get over it. I'm sick of hearing about it. I wish those were my only problems. I would love to have Jordan go over his cell phone limit... but he can't speak. Again, get over yourselves.

And there are some people whom I love very much, that are dealing with something that I can't even imagine. The state, country, and most everyone else is trying to make it so they can not be married. You can't help who you fall in love with, you just do it. Whether you love a man or a woman shouldn't matter. And for the state or government to tell them that its wrong is ridiculous. I know everyone has their own opinions, there is nothing wrong with that. But having the right to free speech doesn't give you the right to be an asshole. My sister got married several years ago. For that brief minute when it was legal in California. We never said the words ''Aunt Flo is gay'' to the kids. I never felt that was a necessary conversation to have. We don't judge people. Unless you are an ignorant idiot. Then, look out. Anyway, we went to the wedding. All four of us. I was not allowing us to miss this for anything. Not something this important, this amazing. But when preparing Brett for his first big trip (on a plane!), I told him we were going to California for Aunt Flo's wedding. And then I asked him. "Brett, who do you think Aunt Flo should marry?" And he just looked at me, and said "Aunt Kristin, silly". And, even now, he tells his friends about his Aunt ladies that live in California and how awesome they are. And they are awesome. I am keeping them, and all my friends who are wishing for equal rights, in my thoughts. I love you all.

1 comment:

  1. I love reading your posts-- you have such a knack for telling a story. You are an amazing person! I read your posts through Mary :)
    I just want to tell you do not give up on requesting an aide for Brett. Let's face it, high school is a tough transition for *any* child! You are the most important part of any IEP meeting. Insist on it... don't sign off on the IEP... Do you have an advocate that attends meetings with you? I am sure I am not telling you/suggesting anything you do not already know, but nobody knows him like you do and therefore, you know best!
    My best wishes to you and your family as you face your next set of challenges!

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