Tuesday, February 8, 2011

Down But Not Out

I am worn out. For the first time ever, I actually feel defeated. I am a royal pain in the butt, I never let anyone or anything beat me. But now, I am done. I am tired, just plain tired. That does concern me a bit, I am not really that type of person. Truthfully, I am more of a bitchy, aggressive type. Maybe it's all this snow we've been having. Or the eight snow days my kids have had in less than a month! (I LOVE my kids, but EIGHT snow days in Missouri in less than four weeks does not happen here! MAYBE eight in a winter!) And there was Martin Luther King Day in there, too, just to bond some more!

My day started with the insurance company. What could be more fun? Why can't they just pay their part of the bill? Why do I have to call them three times and listen to that lovely woman who provides the voice for their automated voice response system tell me over and over that she can't understand my response? I am from Missouri- the part that doesn't have an accent - and was calling Massachusetts. My response was "ONE!", how can she not understand that? By the fourth time I had to repeat myself, the whole state of Massachusetts understood my response. Give me a break!

Then on to the State of Missouri. Yippee! This got even better than I dreamed. This was supposed to be taken care of before January 1st. But for some reason, Alex's case manager can't get Alex's therapies organized. Alex has had the exact same therapy program since he was three years old. I write it, hand it to the case manager. The last ten case managers signed of on it, turned it in, therapists came, all is well. Why is this one different?

And to top it off, we have school... yes, school. Every one with a special needs child loves school. You remember Mrs. Teacher and Mr. Principal from Middle School? Oh, how we love them! I wrote often about how great they were, and I knew they'd be hard to top, (actually impossible) but jeez. All I want is some one to help Alex learn to read and function as an adult. I know this is shocking to many people, but we don't send Alex to school for daycare. He has potential. Lots of it! Dad and I are doing our part, so is Twin Sis, so are Alex's friends. Why can't the school? Kind of backwards don't you think?

I think my problem is that I don't think I should have to be dealing with any of these things. I pay the insurance company to take care of their part. My claim is not even questionable, just follow the rules (that they wrote) and be done with it! The case manager is just, well, I am not sure what is going on with him, but he best get his act together soon! It's his job to organize Alex's therapies, I have already done the hard part of his job for him, he just needs to turn in the paperwork. And as far as the school, isn't it their job to educate students? Why am I having to fight tooth and nail to get these people to just do their jobs?

I expect my insurance company to pay my claims according to my policy. I expect Alex's caseworker to handle Alex's therapies in a professional and timely manner. I expect a teacher to teach.

What is wrong with me?? Don't these people know I have better things to do with my family? And why is it that they can't do their jobs without my assistance? I'm a little ticked off too, they're getting paid to do these jobs that they're not doing! I could use that money, and I'm the one doing the job! Again, what's wrong with this picture?

I do, however, have this feeling that in a couple of days, I'll be ready to take them all on again! That's who I am, I am just on a little break. I wish my break was on a beach though!

Look out, here I come! .... just not bronzed!

Monday, January 24, 2011

THAT stupid word !!!

Yesterday I did something I don't normally do to kids I don't know. I embarrassed them. I REALLY embarrassed them! I didn't feel too badly about it either... well, maybe just a little. It's not their fault they are uneducated. So here I am educating... ha!

I was sitting in the waiting area of the community center watching the football game while Twin Sis and her buddies were off playing basketball. I was astounded at the number of people that just dumped their kids off and left. I was also horrified by the number of people who were not paying any attention to their toddlers as they were yapping with their other adult friends. I saw one child that was probably a two year old walk out the front door while his mom was chatting away with some other nitwit... She didn't even notice, it was only fifteen degrees and nine inches of snow outside, no big deal for a two year old... come on people!

As you can tell, I don't have much tolerance for stupidity or lack of common sense. That's why I felt a tinge of guilt for the kids I embarrassed yesterday, they probably had parents like these. They just didn't know better.

Anyhow, I was sitting in this little - very little - common area waiting for Twin Sis and the girls to finish up their big game. For the biggest part of the time, I was in there by myself, which was nice, but soon here came a group of 5 or 6 young teenagers. They were probably junior high school students; old enough to notice the old lady sitting in the middle of the room!

They had obviously been sent to the community center by their parents for the day to get them out of the house. Now, I am certain my kids are not little angels, but I am also positive that if a lady they didn't know was sitting in a tiny little room with them, where she could hear every word they said, my kids and their friends would be fairly selective in not only their topics of discussion, but their language as well. (Score at least one for Mom!!) About those kids whose company I was forced to enjoy at the community center? WOW, could their parents could use a good bar of Ivory!

Something about this lovely encounter was very surprising to me... And it is not often that I surprise myself!! I found that their vulgar sexual comments, and horribly foul language, and terrible talk of school, classmates and parents didn't really offend me. I just sat there, occasionally glancing their way to check their ages, took it all in, and kept thinking "Where did they learn this stuff?" and, even more, "Please, oh please, don't ever let Twin Sis or her friends sound like this!"

I was very angry, though, while listening to their conversation. As I sat there for about forty-five minutes, those kids used the word "retarded" thirteen times. I didn't say anything, I just fumed. They called each other retarded. They called other people who weren't there retarded. They called classes they disliked retarded. One of the kids apparently had a retarded phone. Really???

I sat there and listened. I am oversensitive to the use of the R word. Absolutely! I know I am. I am supposed to be though. That's part of my family's world. That's one of the descriptions of my Mom job!

When I left that room, I asked those kids if they would stop using the word retarded. Only one of them looked up at me, so I repeated myself. The girl that looked up didn't know what to do. "Hey you guys, don't say retarded anymore," she told them. Big eyes, not sure what to do. Who could blame her? "Crazy lady talking, come on guys, help me!" None of them did. (She really needs some new friends, I wanted to tell her.) I went on and said that I have a mentally retarded son. Her eyes got bigger. I told them all that I would appreciate it if the next time they thought about using the word retarded, they would think about what the real meaning of the word was, then see if the meaning fit how they were going to use it.

I am not sure if I did any good or not. I believe Big Eyed Girl might think twice next time she calls a cell phone retarded. She was pretty taken aback when I told her I had a mentally retarded son. I hope she gives it some thought, I also hope she tells the next person that says the word retarded to her the story about that crazy lady at the community center. Maybe I made her think. I am not sure about the rest of that group. But, I guess every thing happens with baby steps.

For those of you that haven't, go to the link at the end of this post and take the pledge to end the R-Word. It doesn't take a rocket scientist to realize that a cell phone can't be retarded. It doesn't take a nuclear physicist to realize that if someone calls a cell phone retarded, it means they don't like it.

The word retarded does have a medical definition, but like so many words in the English language, it has changed over time. It has now become an over used adjective with a very negative connotation to it.

While Alex fits the medical definition of retarded, there is nothing about him that fits the newer adjective that so many are using. Everything about my Alex is good! Well, for the purpose of this story anyway. So lets get rid of it! It hurts to hear it!


Saturday, January 15, 2011

Out Smarted by an X-er

Don't you hate it when your kids beat you at your psychological "I gotcha games"?

With Alex's anxiety issues, we are sort of limited as to where we can go and what we can do for entertainment, so we spend a lot of time in the car. We travel a lot. We go for nature drives... several hour long nature drives. We enjoy watching wildlife.

With Dad's family so far away, we spend a lot of time in the car driving to see them, too. Anyhow, you get the point.

I've written earlier about my Rocks. Thank God for my Rocks - and I do mean that! I hope every one is as lucky as I am to have people like them in their lives. I know there are times, especially recently that I would not have made it with out them... But some times, those Rocks, some times I'd like to just wring their necks!

At some point one of my Rocks had Alex in the car with her. She is just so sweet...(insert sarcasm) that she taught Alex this really cool travelling game. (more sarcasm!!) Her family calls it Bingo. Whenever you see a yellow car, you shout "Bingo!" Well, on one of our two hour drives to a nature preserve, Alex "Bingo'd" all the way up and back. On the way back, everyone else was trying to sleep! Alex can spot a yellow car four miles ahead of the rest of us. He would shout so loud, it would scare us to death!

You can only imagine the 10 plus hour drive to Colorado. Have you ever played the SAME game for 1o hours? Not even a good college drinking game ever lasted that long?

Now, all parents are smarter than their fourteen year olds, right? Especially their fourteen year old son with Fragile X Syndrome. Sad, but true... You would think! Well, not Alex's Dad and I. This "Bingo" torment lasts for hours, and I am telling you, there are A LOT of yellow cars out there. And Alex gets loud when he's excited! Try to imagine the inside of our car, especially during a loooonnngggg drive across, say Kansas, on our way to Colorado... No one, I mean NO ONE stays awake for that whole drive.... But we all did!.. BOTH WAYS mind you!! Even after dark!

Dad and I are geniuses, we developed a plan. Before we went on our trip, we changed the rules of the road. We thought that if we made the game too difficult, Alex would eventually quit playing. Peace at last....

Here are the new rules.... yellow car is a "Bingo", red car is "Nothing", VW bug is "Slug a Bug"- and you have to name the color, purple car is a "grape", green car is a "lime", orange car is a "mustang" - long story, the car has to be moving also. It's a hard game at 70 miles an hour, right?

Oh my gosh, those rules were made in November! We drove to Colorado with that game going on! Did you know it is possible to see car colors in the dark? Apparently Alex has built in night vision! Is that a Fragile X thing? Or an "I know everyone wants to sleep, and that just ain't happening, thing?"

And ... commercials! We will be sitting in front of the tv, suddenly we hear... you guessed it, "BINGO!" Sometimes Alex even makes sure we count it by qualifying his Bingo with, "It's moving!"

I sort of feel like the loser on that game show.... "I am Alex's mom, and I am not near as smart as I thought I was!"

Tuesday, January 11, 2011

My New Christmas... I got the Sign

Christmas was wonderful! We drove to Colorado, it was a beautiful trip. I had forgotten how absolutely unbelievable the mountains were. An airplane flyover or into the Rockies does not do them justice!

We left Christmas Eve morning and as you know, this trip was a sort of ... well, I am not sure if I was running away from Christmas past or toward Christmas future, neither of which were too appealing at the time. But you know how something always happens to let you know that you made the right decision...

We were driving west down I70 and it just kept getting warmer and sunnier, the closer we got to Colorado, the bluer the sky became. We had Christmas carols playing in the car, we kept laughing at how weird the weather was for a Christmas Eve. During our drive, I was getting texts and pictures from my "Rocks" and my brother, going east on I70. Snow and ice storms, with no visibility... what should have been a short three or four hour drive for them was taking forever. They were on pins and needles. We, on the other hand, had beautiful weather, the windows down, and were covering twice the territory they were. Yup, I think we made the right decision... "Here's your sign!" Pike's Peak with snow capped top, bright blue sky and 55 degrees at the bottom... we were going to be ok!

We had rented a small house. It was in the mountains with a view of Pike's Peak. The weather was nicer there than it was here at home, except for the last day we were there. We got to experience a full blown mountain snowfall while snowmobiling to the continental divide. It was fabulous! Alex, Twin Sis, Dad and Mom LOVED it, how often does that happen??? Alex's anxiety issues, were pretty much gone. Even in the whiteout conditions.

We did come around a turn on one of those curvy two lane mountain highways and came to a full stop in traffic. Eventually, as traffic moved on one car at a time, we saw that there was a big horn sheep in the middle of the road. It was at that moment that Dad, who was driving, was bombarded by a size 8 basketball shoe from the back seat. But other than that, the anxiety level was relatively controllable... And really, the sheep was a little close, I could touch the thing out my window. Alex was NOT pleased.

Aside from that roadblock, we were taken a bit by surprise by a few other things. (Remember, I am from Missouri)... Just because a mountain has a cell tower on it does not mean you get cell service, I think, though, that if you are on one side of the mountain, you might get service... however, the road goes around and around and around said mountain, so service goes off and on, off and on... I didn't understand.

Also, some of Colorado's highways are actually one lane dirt roads! I highly recommend taking them, they provide some of the most beautiful scenery ever! BUT, I would take them in something other than a full size conversion van with rear wheel drive. We were on a four lane highway that just stopped and turned into dirt. What to do... what to do... We were feeling adventurous I guess!

We were also computer less... hahaha... new wifi computers won't work with the old dial up things provided at the mountain cabin. It is amazing how dependent we are on that junk.

This trip, though, was probably one of the most amazing ever. I have always believed that family is so important. I have drilled that into my kids' heads like you would not believe that you spend as much time as possible with family, you never know how long you have. My husband's family lives a long distance away. We don't get to spend near as much time with them as we want to. We have always worked very hard to go visit them every extended holiday we have. Now don't get me wrong here, it's not that I want to spend less with them, but something about that week in the mountain cabin with just Alex, Twin Sis, Dad and me was so marvelous.

We saw our kids in an entirely different light - and we also saw some of the same butt heads as always, too. But something about just us and being away from home was so different. I am sure that part of it was having to drive 8.2 miles to receive cell service... but it was a very enlightening experience.

Have I been cheating myself of these times with my kids by spending the time with the extended family? We love and enjoy Dad's extended family. They are fabulous with Alex and Twin Sis, they GET IT! That's important too. We do fun stuff with them too. We make it a "vacation" with them, more than just a visit. We always have so much fun with them.

But who knew I would enjoy my own kids as much as I did?? Alex has an amazing sense of humor! He is as big a smart ass as the rest of us, who knew?? The things he said on that trip! At some point I stole his Dad's chair, so Dad sat on my lap. Alex told him with a completely straight face to "Get his fat ass up!" I am not sure but I think I peed a little that night!

Twin Sis is so loving and compassionate. She knows what he needs before we do. She is adventurous and a bit dingy, very dingy! She is also one funny kid. She managed to fall of the back of the snow mobile and run up the mountain to catch up to me with out me knowing! Another mark for my Mother of the Year Award!

I think maybe I got to know my kids a little bit better. I was able to see them in a completely different situation. I did miss Bis Sis. The fact that she wasn't there didn't dominate my thoughts, I wasn't depressed that she wasn't there. I guess I wish she was...

I did have a completely different Christmas, the first one in forty something years. I was terrified of changing it... But I think it was the best one I've ever had! Everyone was happy. Every laughed, a lot! Everyone was together. I am not positive yet, but pretty sure, that we found our New Christmas tradition. I think we will spend it travelling.

The vacation ended on New Year's Eve with the long Drive home. We got home around 10:00PM. We managed to stay up and celebrate the New Year, and then were to bed by 12:05, pretty much like every other New Year. I think that means we are off to an uneventful 2011, I'll take it!

Happy New Year every one!!