Sunday, May 30, 2010

No particular place to go

TOday I have no particular place to go. I mean, we have church, and stuff to do but there is nothing special for me to go on about. Our son is doing well with the last days of school, he has summer school, and is going to be in fine shape for the fall. He is going to a camp with church for a couple days, and then sports camp in the evenings.
It is strange for us to have such a "calm" summer. We do notice thought that there are MANY behavior issues if he doesn't exercise enough. The new house rules have been 500 pulls on the cardio glide and 500 jumping jacks. He seems to do better after all that and a good shower.
WE are stil dealing with the hygeine issue though. Hair washing is a thing that isn't getting done, right or should I say appropriately, the shampoo is being rinsed away in his hands and not making it to his hair. I had to show him how to do it to get the hair clean and get the flakes out. This kind of grosses me out a bit but at least he is going to learn to do it right. SInce the soap isn't making it to his hair we hve to find a better way to get the hair clean. Good thing it is short.
Last night he asked me WHY I liked watching certain movies over, I don't do it often, but if I am scrapbooking or organzing stuff it is kind of nice to be able to watch things that i don't have to think about the plot or the story, I already know them too well and can do other things with this as a background noise or somthing. Kind of brainless really but there are times when it can help me not think about what I am doing.

There is a  thing I have stuggled with lately, as a parent, my son has a study guide for a class. Now I will say that this class is not a class he needs to mess about it, but the other students are a problem for him. Most of them have IEP's and Behavior issues. The teachers are used to parents who don't give a rat's butt about what is going on in their class. The study guide for the final appears to be formatted in such a way that the teachers are planning on keeping the kids in the class type for as long as they can. It is job security. Anyway, I have been helping my son organize and work on his study guide. It is a long on and has taken up a notebook and several days. My thought is, should I be helping him with this or is that cheating him out of getting a poor grade? He isn't doing this himself and he did ask me to help him set it up so I don;t know if I am being the hovering pain in the neck Mom or if I am legitimately helping him with the learning process.
If you have a comment, please post it here or on FB or where ever. I would be interested in seeing what you all have to say.

Thursday, May 27, 2010

"Oh look I breathed today, I deserve a treat."

today is a weird day for us. Big shock there right>? How many weird things happen to us that we start calling it all weird and we are done with whatever?
It is weird. My son fell asleep after dinner, I got a business call that I had to take, and my son crashed out on the chair and then soon after went to bed.
I don't know if anyone has heard this before but I have heard that kids on the autism spectrum don't make enough melatonin naturally and taking a supplement periodically will help them get the rest they need and be able to function in a slightly more "normal" fashion. Lack of deep REM sleep is a major problem for my son. I can tell when it isn't happening. How, you ask?

The "gimme's" or the "wanter" gets stuck and he goes all OCD over all the stuff on the planet that he wants to have. He nags, whines, begs, and basically turns us into stoic mean monsters who won't give him a reward for breathing. At least that is what it feels like to us. Kind of a pain in the neck really. This type of behavior makes my husband and I worse. I am more adament than ever that I WON'T take him someplace or do special treats with him when he acts like a booger. HE will learn that treating people you love like they are just here to give you stuff is not loving that person it is using them. That isn't love. and it is a perception problem that many Aspies have. I won't tolerate it, once again, it is something that will be trained out of him, until I am certain that he learned it. (See what happens when you tell me what to do, liek the kids I will do the opposite, I am good like that)

Tonight he tried again for a new video game. It has made me more determined than ever to NOT give it to him. In fact, I am thinking about moving the hiding place and/or returning it to the store just to make the nagging stop. Oddly enough, he isn't allowed to play most of his video games anyway so nagging me for another one is just silly. He sees it as an acquisition and not as a thing to work towards. Last night we were saying to him, "Oh look I breathed today, I deserve a treat." Hello, that just sounds ridiculous. I think this AM he finally got it, although it took all my self control not to throw the game in the garbage and say, "Forget about it kid."

How much do we get to do? what MORE can we do wrong or right? Today it doesn't feel like much is going right. Maybe tomorrow will be a better day. Not like Scarlett in GWTW, "I'll think about it tomorrow."

Friday, May 21, 2010

We have to do our homework.

Doing our homework...been there done that. Both my husband and I have done homework. Many evenings it becomes a dramatic household event. WE won't let him off the hook, bad people that we are. I mean really, how dare we expect him to do his homework and do it right the first time. Who do we think we are anyway.

Well, let me tell you. We are the people that can make or break the system of this house. We are not enthused about doing the work FOR YOU but will explain the hard parts, and give you ideas on how to write what you need to write about. We are also the ones that will help you get your thoughts together and discuss the fact that you have no way of telling us the differences between different ethnicities and cultures. (Personally, I am glad about that one). Right now we are tutoring our son with "To Kill a Mockingbird" by Harper Lee. He does not understand why people in the story act the way they do and why they would think others are different than themselves. In our surprise, our explanations are less than what they probably should be. I am not happy that my son is learning racism at school, it has never been taught to him before. It makes me uncomfortable. My husband and I do not differenciate. People are people. That is what my parents taught me and that is what I am teaching my son. I don't care if you are purple with pink polka dots, you look just fine to me.

I wish sometimes people would look at my son and see what a cool person he is. Instead they examine his behavior or his questions and determine what and who he is from that. It is wrong, it is agrivating and it makes me sad. He is not given his full potential because people think he is limted because of his autism, instead they should see what he does BECAUSE he has autism. Think outside the box, left of center, or the square peg in the round hole. WHATEVER you think it is fine, but pigenholing my kid is not acceptable because he is focused, had ideas and wants to do new things.

My son tells me he relates to the "Bein' Green" song. He says it is because people treat him differently because of his Aspergers. Pretty sad that our kid knows he is treated differently but couldn't tell you what was different about the kids who were visiting their HS church program last week.

But he is different, people know it and won't give him a chance. What a sad loss for everyone. Not for me though, I won't give the kid a break about his homework.

Tuesday, May 18, 2010

Helping the.....

Oh man, what now. I get to help do what? find what? where? Oh in my son's toom (call HAZMAT STAT). The boy has collected and NOT PUT AWAY so much stuff (he hates it when I say "Crap") that there is very little place to walk. No room for more books, and no room for his collection of games and misc stuff. the space in his room is limted to a path. This kid is a major horder and we will have to bite the bullet and go through it again. unlike real horders, he lets us go thru the room and clean it out. We can do it as long as he isn't there watching us. Which to me is weird, but OK. My main goal is to be able to walk into the room itself and try to teach him to put stuff away so he can find it again. Not my job to find it if he can't tell me where it is at. His incapability to keep his room clean normally makes me shut the door during the day so I can't look in there. My cousin once told me that she thought it funny that I would show her his room and then state, "Use your imagination, and imagine the room clean, because that is the only way it will happen."

I will never claim to be a "Suzy Homemaker" I am of the belief that my generation was not brought up to that. I was always told to "Get a job, get experience, work hard" there wasn't much talk about housework and making dinner (????). Now here we are teaching the basics to our son. He needs to learn to clean his room and make his bed. Then add the pet responsibilities, and the essentials of hygiene and all that other stuff and there you go a full blown problem. WE are starting at the begining, but when he was younger, we would clean the house when he wasn't home, same with the laundry, and the other responsibilites. The first time he saw us cleaning the house he wanted to know what we were doing, he had never seen us do that before. It was a whole new show to him. He still doesn't get it. We will keep trying.

I think everything takes practice, there are certain things you can't practice away though. Like today, I found out that I wasn't accepted formy masters. It stings, but I can't practice away that I wasn't accepted. So I decided that my new vocation is going to be a "cheerleader" I can do that...shout a lot and jump around. I think I can manage. Kind of like we all don't get to go. I didn't get invited to get my Masters, so I can be mad and stomp around or I can be me, and laugh and decide to do something silly for a while. Whatever works, right? How does all this crap have to do with Aspergers and autism, well accepting that we don't all get to go and that we are supposed to be clean, clean up and stay clean is kind of a big thing. Tehre isn't any middle ground. It all ties into each other.

So we practice, and practice and someday we will be ready and then it will all come together.

RRRIIIGGGHHHTTT, :-)

Sunday, May 16, 2010

Callous? Who ME? ;-)

You are kidding. Right?

I wish.

Today is a weird day, not becase it is a Sunday, but I am speaking metaphorically (ohhhh big word). Over all, TODAY is weird. Jobs are weird, things get so messed up somtimes. Going back to the teaching flexibility thing, there is a lot to be said for that. TEACHING our kids to be flexible by being flexible ourselves. For example, on my own part, I got this great job, albeit temporary, but still cool. I was hell-bent on working in the city and doing all the stuff city people do. It sounded like that was what I was supposed to be doing. Reality got in the way, the resources I required were not there, the computer had little or no access to materials, I got frustrated.  What ended up happening? Well, I am working from home, using the resources I need and a computer that gives me access to everything. We all had to be flexible, my supervisor, the office and, least of all me. Definite object lesson right? My son learned that Mom has to do things sometimes that don't work the way she planned. I can say honestly, I am glad I listened to the train station master and bought a 10 ride pass rather than a monthly pass (another lesson, listen to the experts, sometimes).

Anyway, being flexible is a good thing. It is something else that is taught at home, not just at the school. Several nights ago, I attended a workshop. The focus was for kids to go to college and what they needed. After the presentation I spoke to the college rep. I told her my son needed a tour of the campus, and that I would be willing to bring him when she had the time. She asked me if I wanted to be there, and I told her "No, I have already gone to your school, and did my time. THis is the time for my son to go and get a tour and be ready for college, not me." She looked a little shocked, but then told me to have him call in June and we would set up a tour for him to be there and show him what was available. I don't think many special ed parents realize that we aren't going to be here forever, and although we want our kids to go to college and all that, many times it isn't feasible or practical for us to go trailing along after our kids and make sure everything goes OK.

Yeah, it is harsh, but reality is pretty darn callous too.

Thursday, May 13, 2010

Many thoughts...

Tonight,I have many thoughts, ideas and concepts running thru my head. What to start with? I think the best thing to discuss is parental responsiblity. WHAT? Aren;t all parents responsible for their kids? DOn't we take care of them, help them and do wht we can to protect them?

I would like to say, "Yes, yes we do."

BUT then there are stories in the news about kids, an autistic 14 year old drew a stick figure picture at school. Naturally it was violent, and the parents are appalled that their kid was suspended. I am appalled that a suspension hasn't happened before. Yeah, I know this isn't a popular viewpoint. But then my husband and I used to tell the middle school to give our son detentions and they wouldn't do it. As I told a friend of mine, there si a lot more to the story that we aren;'t getting. I guess my thought is, why didn't the parents train their child with the third grade mentality to NOT draw pictures like that.

For example, my son has been trained (compare it to a puppy) not to behave like a little jerk in public. He will loose priveleges immediately and has (think of the party we had a month back) . Even 3 year olds can be trained.... and so can any kid. Last night I was at a workshop. This one was typical, crowd of parents looking to "fix" their kids. One parent in particular was having issues with the fact that her son was in classes that would "not allow him to go to college" when I heard that the thought went thru my mind, "What is she doing at home to train him to be ready for college?" Then I thought, "Life is all about the training."

What I hear at a lot of these meetings is that the school needs to fix our kids. What about US taking the parental responsibility seriously and working HARDER with our kids at home. Setting the boundaries, dealing with the guidelines, and yes even making every single stupid video game controller disappear. Our kids need to work harder than the others, we don't have to like it much (on a night like tonight, I am worn clear thru) but it MUST be done. Otherwise, living like we will be around to care for them forever is a fool's game and in the long run really stupid. My son is learning the basics, making his own bed, putting his clothes away and  cleaning up messes. Is this done the way I want it done. Uh, NO, but is it done? Yes it is done. Will I do it over, NO, should I? NO. our kids will only learn by practicng and doing.

The other night my son had a cooking project, he made multiple omlettes, to the point the smell made us almost ill. But in the end he was making an almost perfect french omlette. HE made about 10 of them before the taping was done right. He discovered how difficult putting a show together was, and he learned that the better he did, the more he had done. It all goes back to training and practice. Like the new guy, Lee Dewyze is practicing and getting better by the day. He is working with professionals to learn the craft and work on the music. It is all training and practice.

Not just the schools, job, the parents need to work on this too. It isn't just US and it isn't just THEM it is a team effort, and although as Dr D says, "It might take your son longer to get where he needs to be but you will get him there."

AMEN brother.

Tuesday, May 11, 2010

Living with Lee.

Not really, it should say living with Lee fallout. Our son is learnign something new about fads, or flashes in a pan. Not that Lee is either, but I am going to let him be the fall guy this evening.

After weeks of hearing aobut htis young man at school, my son has finally had enough. I think we fixed the immediate problem, but when I mentioned to him that I girl I went to school with became the First Lady of a country smaller than the state of NJ...he thought that was nuts. How could I not be jealous of her? was the first question...hmmm, dealing with the issues of a small possibly war torn country and I am supposed to be jealous? what for? Better her than me. I have to work hard enough every day...being responsible for all that is just beyond me. UGH.

I think it is all inperspective.

I think it is cool that if Lee does win, everyone does. THis young man has faced a number of issues, and going to school and doing all that is only part of it. I am of the belief that if he does win or come darn close, he will but the special ed community in this area on its head. Not that it would be a bad thing, to show that special kids are just that SPECIAL KIDS! Theya re as talented as everyone else, sometimes it might take longer, but they can do it.

So what now? It is time for us to keep things on an even keel. I know the excitement at school is overwhelming for my son. He is not able to keep his emothions at bay and htat we are supposed to be working with him through all of this stuff. Lets hope he can keep his head together and not get too noisey about his own opinoin.
Goodness, you can tell I am tired I am all over the place tonight. Gotta work on the focus. :-)

Sunday, May 9, 2010

Mother's Day aka Day from Aspie land.

Holidays are kind of a drag. Not for most people, but it is something I don't generally look forward to. Generally my son has been up sinc about 4 or 5 AM jumping out of his skin excited. Spends the day jabbering all day, never shuts up and then finally we are able to quiet him and get hime to watch a favored TV show like "Pawn Stars" or "Iron Chef America". Really the jabbering about nothing can wear us down and out.

His misguided attempts to "love us" is delved into oblique references to purchase us extravagent gifts and things we don't want or need. Frankly, we need nothing. I mean it, nothing. We have too many things, clothes, shoes all of that. There are very FEW things we would keep if we had to sell out; and most of that would be family items that are important to US.

Today was a "jabbering day", at the end of it, we decided to bring our son home early, drop him off for a shower and bed and then take my Mom home. The 3 adults had enough of the constant talking; you know it is bad when my MOM says something aobut it, she never critizes our son for any reason. It came out that yes he did wake at 4 or 5 (although he wouldn't admit the time). It is days liek this that we doubt he will make it. Deep down we KNOW he will, but when you have to suffer through HOURS of constant talking aobut NOTHING it is difficult to determine what is what. Right now he is on his bed, resting and he has had his meds and is going to go to sleep soon. It is hard to realize that he is going to be grown and do great things after a day like today. It is too much to hope and pray for. Although, there are people who have great faith, I hope I am one of them. I think I am but sometimes I doubt myself more than I should.

Today at church we heard Byron Pitts speak. He has a story you wouldn't beleive. His mother (I love her) was told her son should be institutionalized and he would not be able to go to school or do anything. It sounded just like our son. The SAME thing happened to us at our first evaluation when our son was 3. We met Byron, bought his book, and told him WE HAD THE SAME THING HAPPEN TO US. I told him that I told the doc to "Shove it." My son will do the things he needs to do. HE WILL- with God for us who can be against us?

Saturday, May 8, 2010

Mother's Day, Omlettes, and what?

I have always thought Mother's Day was special. My poor Mom actually used to dislike the holiday so much, she tells me now that the kids were terrible all day long and it was just a miserable day all the way around. I was the kid who made her unedible breakfast in bed. I only could use the MONGO coffee maker, and I was a terrible cook (harbringer of things to come, I still can't cook).

I guess my point is that today was kindof like Mother's day. We had to do a cooking project for our son, or he had to, we were the prop masters and camera crew. He did a video on cooking omelettes. He had his panic attacks, and other behavior issues in between takes, but did a credible job for a freshman boy who is in a class full of seniors. I am not excited about tomorrow in any way... the boy will be whining and complaining all day, and we are going to a place that I KNOW will be packed with people...UGH. The only good part is my Mom agreed to come with us.

I guess what I am getting at in an oblique way is that everything is different now. Things go so fast, kind of like when Dorothy said of OZ, "People come and go so quickly here." Maybe I am thinking that video taping the boy will keep him at the age he is at, maybe vicariously I am wishing I had more patience when I was younger and not so self concious. My Dad always wanted to take my picture, I rarely ever let him, it seemed like when I came home from college, or a long day at work he would have the camera shoved in my face, "L, go over here and let me take a picture." I miss those days; no, I miss my Dad. I rarely liked a picture of me, and I like them even less now that I am larger than I used to be... I look like a beached whale now...just not a good shot to be had.

I will miss my son as he grows up and away from us; with the pictures my Dad would take, I know now that he felt the same way. I know my husband will miss the boy too. Our son will grow up and away, maybe not as fast as some do, but it will happen. His focus, drive and ambition today was in full force while working on the "show" and it hit me like a ton of bricks.

Proud, scared crapless, and worried. That is more emotions than anyone should be handling especially prior to Mother's Day.

My cats have Autsim

Catchy huh?
They do though, all three have different levels of autism if you look at them closely enough.
For example, T is a lower functioning level, he doesn't want to be touched, nor does he have the social cues to know that if you purr someone is more likely to brush or pet you. He doesn't like either.
Then there is B, he is higher functioning, but demanding. He wants what he wants when he wants it. And you had better be there to pet, feed, play mousie with then and there or it is all over with you.
FInally there is G, now he is almost neurotypical. He demands almost constant attention, and then wants you to do it his way all the way.

So what does this all mean, besides that my husband and I are weird? Well it means that we are observing certain social tendencies in all levels of society. Our son is at a higher function level in some ways and lower in others\. his maturity level needs some work, but he is learning about some new programs, he is watching the series on our computer at night, and is thinking about other things besides cartoons and comic books (YEA!- thank you to the senior who is introducing him to a quasi-historical program).

I think that in a strange way we all do our own things. We all want things fast, now, and do it right the first time. Very typical in the autism world, perfection and OCD all get mixed up in a crazy kalidescope of colors, sounds and vibrations. Desensitizing to those things is costly and time consuming. We did it with our son when he was younger. Had to or never go to a concert or restaurant again...he learned how to place his own order, and when to send the Sprite back when it tastes terrible. He also has been complimented on Manners and other positive behaviors.

Now if we can get the cats to behave better we will be golden, won't we?

Wednesday, May 5, 2010

Weird week

Hey,
It has been a weird week. I pretty much am working from home, and frankly it is really great. I now understand why people like it so much.

My son is adjusting to my working like I am and things seem to be going pretty well. He did get a C on a Bio test and we have been giving him a hard time about it but it is his own fault. He lost his notecard and didn't study enough. The new thing is that he has to not take anything to school that is not school related until he can learn not to loose the important stuff.

We shall see what happens, keep you posted on this one.

Monday, May 3, 2010

New things

Kind of different today, I got a good cardio going to and from the train. My legs hurt....it is good for me though. I think that life is going to be good but different now.

The boy is going thru changes, not only wiht the hormones and pimples but with being responsible. For the second time in a month he has lost his planner. This had numerous dates on it and other things as well. He is not using his time appropriately if he is able to track was is important to HIM and not what is important to his functioning in the classroom. Initially, I thought to replace it. My husband, bless him, feels differently.

And guess what, the new job thing, means I have to finish this tomorrow after work. It is now bedtime. OOPS.

Sunday, May 2, 2010

At least he cares....

We all know it is that time of year, and yes I have a sinus infection to beat the band. I have taken one dose of antibiotics and am now on round two. Ever since living in NJ, between a forest preserve and a cranberry bog, my sinuses have been messed up. Then throw 2 years in St Louis (otherwise known as the armpit of the south, you sweat so much all year round there you feel like an armpit) in the mix and I am set for life to have all kinds of sinus issues.

My son is worried. Not only about me working again (!!!!), but about my sinus infection. He told his small group that I am sick and he is scared that I might not be well again because I am an old crab (so what else is new?). It is actually kind of cute, but I did tell his SM leader that I am really fine, just a little stuffed up because of the pollen (at 95% thank you very much).

really it comes down to the compassion piece of the Aspie puzzle. Although his compassion right now is only because he wants an excuse to give me an extra hug and to hang a bit on me, at least he remembers to ask about how I am feeling, even when I growl, "Get off me already."
Hey at least the kid cares.

Oh and if you get a chance, go check out my friend's blog: Midnight in Chicago EXCELLENT article on autism and you all need to check it out.

Saturday, May 1, 2010

Aliens from another galazy.

Tonight's program on History Channel. Aliens. Do we come from Aliens? What are aliens? Today I feel like an alien, but that is the antibiotics talking.

This is the kind of stuff that gets me thinking; why do our kids think differently than the gens? Today, our son had Service Club. This could involve a multitude of things. Going from painting houses, to helping at a dance, to working on a haunted house. Today's deal was setting up for Special Olympics. The question he asked in the car was, "Why am I not participating in Special Olympics? I am disabled." My husband had a great response, "You are not disabled, you think differently. Special Olympics is for people who are disabled and it is their time to shine and show what they can do and how they do it." He took it well. Then when we pointed out that he is in regular sports and that he is allowed to do a bunch of things that are above and beyond what other kids like him do, I think it really hit home.

When we asked him about what they did, we were told that he unloaded boxes, road around in a campus golf cart (way cool) and then set up some other stuff. There were about 7 of them and they finished an hour earlier than expected. Even more cool. I think getting him involved in different activities is a real bonus for him. He learned how to help, he is compassionate towards others and he is trying to get into understanding how others feel.

Gosh, I need to work on that too. I hacked off my husband tonight with not being able to decide what movie to watch...for the defense, I had woken from a 4 hour nap (still sick), was still groggy and not mentally alert enough to be caring about what to watch let alone actually watching something that makes me feel bad, or just is a tear jerker...neither I have the tolerance for. There are times I miss generic/lame TV. There is nothing I am truely into on the tube. I don't have the habit. Although in the early 80's I turned down Friday night dates to watch Dallas, Knots Landing and other programs. When I went away to college, I just stopped. I had a good reason, the houseparents kids were in the TV room and it made me uncomfortable to be in there with them watching smarmy TV. So for more than 1/2 the year for 4 years I rarely watched TV. It eventually turned me into a TV snob. Now my husband and son think I am a pain in the neck.

Another thing, Dr. Demando, or my son, is still in the instant "Let me do it now" mode. UGH. I won't, merely because he needs to wait and I want him to think about what he is asking for and how it could affecto thers. That I and I am using the computer and he doesn't need to look up a book series right now.

I msut be feeling better, I coudl really go for some chocolate cake.