Saturday, July 30, 2011

It's gonna be a good day

After a sorta rough night there come a glorious morning. Very roughly quoted I know.

The boy has been talking again, to us about stuff....it is a good thing. AND he is willing to step up, try again and go back to life as he knows it at try harder to do his best with ALL kinds of people. Don't know WHAT changed his mind but hey, who is complaining? I would say that many prayers are answered. Maybe it was hanging with a friend last night that helped change his attitude who knows.....all I know is that he has been talking about what he needs to do to fit in and we are trying to help. Heaven knows if he will listen but maybe it will sink in....

He is driving, doing his car thing and got a hair cut (w/out complaining- although the pretty girl cutting it probably helped), and drove us to the post office. He did really well although I probably should be sedated while he is driving- I get nervous.

It is a little thing, but these days little things mean a lot. Let's just take what we can get for today and RUN!!

Monday, July 25, 2011

Autism and Church

Ok I admit it.....I wasn't happy with this one. As a writer, there was just something missing for me and it has bothered me for days....no weeks.
This one is just such a difficult topic and I have edited, added and redone until it is just a mess. Maybe I don't have the knowledge to write on something like this or the talent, yet.
For now....this is a work in progress and I may redo it or may just try again at a later time.
Sorry all, for now, I am just gonna take a hiatus on this one.
thanks for understanding.

Tuesday, July 19, 2011

Do or Don't

Will or won’t

Working on basic chores around the house means that there can be automatic friction with the members of the home and the Aspie who doesn’tknow what the heck is going on
The boy was home on the weekends; from now on he would be home on the weekends on a  more regular basis. It was a Saturday, and normally, he would have been gone early that morning. He was home this time and the cuter one and I were cleaning the house; our normal Saturday AM routine. The boy had NEVER seen us doing that before. WE dusted, swept floors and washed the kitchen and then did some laundry. He watched, like we were the trained staff or the monkeys at the zoo jumping around trying to reach a dust mote.

He didn’t get it.

In fact, he didn’t understand that cleaning the house is an ongoing project. He couldn’t comprehend that we expected him to clean his room, dust and sweep. Then we could go have a good time. This took years….a long time of “I don’t know how to sweep” , “Where is the broom again?”, “Why am I working on a weekend?”, and my personal favorite, “This violates child labor laws Mom, I shouldn’t have to dust my room.”
What ended up happening?

Well after I got frustrated, annoyed and angry, we compromised. The boy has his chores. He has the list of what is expected from him every day. Right now he is interning, so the list isn’t as long. But he KNOWS how to unload the dishwasher, throw in a load of laundry and clean his work clothes. HE KNOWS he has to work on the list. He knows that playing video games all day or saying, “I don’ wan’ ter.” Is not only going to get him grounded (for annihilating the English language for one)….it is likely that he will lose additional privileges as well….in this home a bedroom door is a privilege, not a right….and the door can be removed without warning.
How did he learn to do this contributing to the home stuff? Largely, he learned by watching. Initially, he watched me unload the dishwasher a few times. Then he did it with me a couple times and then went solo while I was in the other room. NOW he does it as part of his contributing to the home. I think the big thing is that the chores HAVE to be seen as a viable and regular (daily) contribution. The contribution to daily living and being in a family and being responsible is huge. He does the jobs we ask him to do well. However we did have to do training, kind of like training the new person at work, only it is your kid. The other thing we do that is harder yet is to keep it positive…correction is fine, but NOT when you hear, “I think I am done now.” Then you go in and “Nope buddy you aren’t done yet.” I normally ask him if something is missing, “Where is the pizza wheel? Did you find the bottle opener? What about the large cheese grater?” Then we go through the dishwasher and see what is still in there. The only time he has left items is if HE thinks they are dirty. “Mom, this doesn’t look clean, leave it there.” No more than 1 item is left behind, and most of the time it is something that didn’t get really clean and needs a redo (he was right).

Making chores, or household duties, a contribution to living in the house, means that the boy is taking OWNERSHIP of the job he is asked to do. Sometimes you have to do what we did and figure out WHAT jobs (dishwasher unloading, laundry, watering the garden, folding the towels) he is able to do and expand on those jobs…. that and we tell him, "You can't live in our basement, we don't have one so learn to do your part of the chores so you can have your own apartment."
However, the boy’s room cleaning is an all Saturday job with help from the cuter half and Mom….he can’t do this one on his own and it is outrageous for the cuter half and I to expect him to. Not that he is a dirty pig, but the room is slightly, “unorganized” and the boy does recognize his failings in that area….he does help with it but at first glance….he has to leave until it is under some real control.

Hmmmmm it is about time we take a look in there again. Normally I close the door and, “Pretend the room is clean.”

Monday, July 18, 2011

A blast from the past

http://livingontheedgeaspie.blogspot.com/

The blog is the same, the information is the same....the title is the original title that was finally released and I took it back again.

Go to the link and check out the most current top ten listings....you might be surprised at what is there.

Friday, July 15, 2011

Video Game nightmares

Video games are my newest nemisis.
I hate them.

There are other things I am not crazy over, but the longest running problems the boy has stem from the over use of video games. We swore off Mario- those games have all but disappeared (via e-bay). We don't allow World of Warcraft (think electronic version of Dungeon's and Dragons)

The boy has been playing these blasted video games again. The thing is though the mental overstimulization messes him up so much that he is incapable of forming a "normal" judgement call and is so wired up that when he does get busted he goes into the yelling bit the cuter half talked about the other day. We get told how much we hate him and we don't care about his feelings and we hate him.....it goes on and on. Finally it sinks in that we are setting down rules for a reason and that he is required to follow the rules. EVEN when he is over stimulated by video games.

To say I am sick of it is putting it mildly.
Today I had to leave work, come home figure out what was going on, get yelled at a bit then finally calm him down when his buddy got here....... He yelled because he had been caught playing those stupid video games all morning. He got up REALLY early just to play them.....we had told him we would leave one system out and he would have to prove that they weren't addicting or consuming....they were.

SO the end result? This means that he is now cut off from these game systems. If the cuter half would let me I would sell the dumb things to the highest bidder......or the lowest just to get them out of the house. Eventually, it would be my dream to get them out of the house, gone and forgotten.....but I doubt I would ever be that lucky.

The thing is there are people who don't like that I write about this kind of stuff. There is nothing wrong with video games and the kids don't get addicted to them. My response? Well when pigs fly, gophers fly out the cat's butt and when the slugs jump out of the wand over there....
There needs to be a study on video games and Aspies.....there does but no one would want to go up against the video game lobby to show them up. That is Ok because the study done in this home indicates that video games should only be played at 10-15 min at a time.

To prove I am serious I have cut the boy off of the system...it is going into hiding somewhere and I don't have to say where....

Sunday, July 10, 2011

Wanting to do well

I don't know HOW I will be able to follow up with the eloquence from the cuter half. Frankly, I am a little intimidated trying but I will give it my best shot...

As I have said before, things  come and go so quickly here. The boy is currently working on his internship. he is learning to drive and he is doing some minor household chores. If we ask, or use the listing technique it is more likely he is willing to help. His focusing is about 45 minutes, then he needs a break of some kind to get his brain back on track.

This summer has been a huge challenge for him. His inability to concentrate fully has been challenged and he has been able to meet that challenge. Driver's Ed is a challenging class. He has to drive a certain # of hours a week, then take tests, then work through driving....and he needs the time on the road. his ability to drive is necessary....he has to drive in order to work.

It is hard for him to let go of things. Certain issues will be an ongoing struggle for months. Although he has written about it himself. The cuter one and I hesitate to release what the boy wrote....mostly because we are concerned about the reaction. He doesn't need more people laughing at him and he is acutely aware now that his image is what is viewed by others and his Aspergers NEEDS to stay in his bedroom. It is a hard lesson for anyone to learn. Although to many things will APPEAR to be fine, he is so well trained that his feeling and emotions will not surface until he goes to his bedroom or gets in the car and is a distance away from where he was. We have taught him to keep a straight face, stiff upper lip and keep it together UNTIL he gets home and in is room THEN he can let it out. Most people don't realize that he is ABLE to do this and don't believe it when they see it.

Although we are supportive of him and his struggles we are aware of how HARD he works and what he does to get things going and  where he believes he wants to be.

Lately, we have noticed that he is quieter. He is very anxious around people he isn't familiar with- he is more apt to check with the cuter one or I before blurting out something. He is not letting himself go.... the old adage is once burned twice shy which means that "If somebody is said to be once bitten twice shy, it means that someone who has been hurt or who has had something go wrong will be far more careful the next time."

He is more than careful. He is scared to show himself fully to anyone (let his hair down)......I think eventually he will relax. I believe the biggest thing people forget is how truly tough he is. He made his OWN life changing decisions at 13. He made his OWN choices about what sports to be in, what classes to take WHAT diet to follow......HE made the choices and his parents have supported him.

There are times I dont' agree with him. I tell him so, but he still makes his OWN choices anyway. He is now careful to protect himself from being hurt. Can you blame him?

For today we prep for the internship, for driver's ed. To visit with friends....to be rescued and taken out of town to have FUN by a generous family.

We are chosen, we are blessed, we are happy. Not many people gen or otherwise can say that.

Just for today, I will try to live through this day only, and not tackle my whole life problem at once. I can do something for twelve hours that would appall me if I felt that I had to keep it up for a lifetime.

Just for today, I will be happy. This assumes to be true what Abraham Lincoln said, that "most folks are as happy as they make up their minds to be."


Just for today, I will try to strengthen my mind. I will study. I will learn something useful. I will not be a mental loafer. I will read something that requires effort, thought and concentration.

Just for today, I will adjust myself to what is, and not try to adjust everything to my own desires. I will take my "luck" as it comes, and fit myself to it.

Just for today, I will exercise my soul in three ways: I will do somebody a good turn, and not get found out. I will do at least two things I don't want to--just for exercise. I will not show anyone that my feelings are hurt; they may be hurt, but today I will not show it

Just for today, I will have a program. I may not follow it exactly, but I will have it. I will save myself from two pests: hurry and indecision.

Just for today, I will have a quiet half hour all by myself, and relax. During this half hour, sometime, I will try to get a better perspective
of my life.

Just for today, I will be unafraid. Especially I will not be afraid to enjoy what is beautiful, and to believe that as I give to the world, so the world will give to me.

Thursday, July 7, 2011

The Cuter Half has his opinion.

This is the cuter half writing. Normally my wife would be doing this, but I have been compelled by recent comments by neuro-typical people with no experience dealing with the daily struggles of parenting an Autistic child to post a “blog” on my opinion; I hope this meets your expectations. 

I have found it interesting that my wife’s recent posts have sparked such uproar from people. In my experience those in the wrong, much like the Boy, scream the loudest. Whenever he has made a mistake, as ASPIEs often do, he screams how it was not his fault. “I did not, it’s not my fault, You made me, I was tempted…”. This all stems from the “ASPIE extremes” as I call them. There is black, there is white and there is no gray, and when anyone is very wrong in their actions they tend to act the same. I am wrong so I will deflect and distract and yell about this so you forget about that.

Let me say MOST neuro-typicals have no idea how different our perception of the world is from theirs.  Have they ever once been told to “Keep that retard of yours away from my kid”?  We have been and that was by a “neighbor.”  We have also been told “No, we will not come over and have our kids “catch” what yours has”; after people realize what child’s parents asked them over for dinner.  So when extended family must insist firmly that our home is not acceptable for a planned family party, we do revert back to our prior experiences, experiences MANY neuro-typicals would never comprehend.  We are thankful when people come over to our home and do our best to offer them what ever hospitality we can.  Unfortunately, the Boy becomes his “Labrador Retriever” self; not because he means to, just because a friend, family member, or any person coming over is a rare treat, and he gets excited.  Yes, our home is small and the Boy gets very animated when people come over, and we do entertain outdoors with the doors locked so that if needed we can get the Boy into a familiar, safe, non-stimulating environment if we need to.  The neuro-typicals with their son’s best friend living next door and having to compare Christmas lists with the other mom as the two only need one copy of the video game as they share everything with each other, would never understand the abject isolation we face being the parents of “that” child.  We can list on both hands the number of non-relative kids who the Boy has had to the house.  Most neuro-typicals have no idea of our isolation, and do not care to.  Otherwise they would know how hurtful they have been, a polite and kindly worded (albeit lie) of “We cannot be outdoors due to allergies” or “We cannot be indoors because of allergies to your cats”. That would be understandable: a firm no, well, to us that is hackle raising insulting.  

It appears that the posts making the biggest impact stem from a recent family party. Having surveyed numerous people, the results are an over whelming “You do not video tape an ASPIE making a fool of themselves, it is wrong.” Especially when he is 16 and you are significantly older and encouraging the behavior. Now if you are 14 to 18 and encouraging bad behavior to catch another 14-18 year old on tape fine; kids will be kids. The issue comes in when it is a grown adult(s) over the legal age to drink encouraging their handicapped minor relative to misbehave solely for their own amusement. Any videotaping of a handicapped child/teenager/young adult by an adult for the sole intention of posting it later is wrong. Perhaps we should post on you-tube the embarrassing photos and videos we have of them and their parents? (FYI- we don't have any so don't worry). Our ASPIE kids have enough stigmas associated with them they do not need help from “grown” adults. The insulted parties to the posts need to replace the image of the Boy and insert the image of a severely handicapped child being made to consume large quantities of cake while people laugh at him. Not such a funny sight is it?

I often wish the Boy was in a wheel chair, or had some outward sign from far away that says “Hey, you have to be careful with me.” But he does not, and in his Abercrombie and Aeropostale he looks just like everyone else. Yes the boy has improved socially to the point he can blend in….almost. It is like the heavy red lip stick that did not quite make it onto an elderly lady’s lips; you smile and pretend it does not stick out; it’s the same with our son. From a distance you would never know, and up close you politely ignore… well you should politely ignore, most people do not.

The minute a camera came out, the humor was gone. The Boy does not have the social ability to defend himself, or the sense to stop. And it is sad those who were involved have chosen to deflect and distract and not view the situation from our point of view; our son is handicapped, and as soon as a video camera appeared- the fun was over. No different than the kid at school who gave him 5 quarters for his 5 dollar bill so he could buy a pop from the machine. 5 for 5 what ASPIE would not fall for that con? Stuff your face with cake you will be on You Tube and become famous.

Yes, our standards and expectations are high: of the Boy and of society. It saddens me when parents of neuro-typical children accept less than perfection from the kids who can do anything and be successful without trying very hard. Again, you do not video tape a handicapped child/teenager/young adult doing something you think is funny. If it were acceptable “America’s Funniest Videos” would be won every year by the handicapped. The best example I can think of his a teacher who came right out and laughed telling me “The Boy runs like "Forrest Gump". I get a good laugh out of that each day”. Needless to say… that teacher is lucky the Boy’s parents are so… let’s say, "understanding".

The neuro-typicals have no idea the level of structure we must incorporate into our lives. 
Oh the joy to have the luxury of saying we leave next week, later today or even tomorrow.  To the neuro-typical these are acceptable answers, to us it is a maddening nightmare, interrupting a closely kept routine, as we are expected to be available to join them.  (“But when tomorrow, Dad? What time today, Dad?  I need to plan, I need to pack, I need my travel guides so we can go to a “Diners, Drive-In or Dive” on the way!”)  We wake at our house promptly at 6:43 and bed time is 10:13, we have to plan our days and trips ahead and must inform the Boy, regarding the minutest details, or things do not go well.  Oh the joy we would have if we could drop everything and plan a spur of the moment dinner.  But we can not and a phone call at 7:05pm saying we are leaving now for dinner meet us in 20 minutes is not going to be meet with a rousing “See you there.” 

Why is it so hard for neuro-typicals to say “We arrive Monday at 6pm, we would like to meet you for dinner at 7:30pm. On Tuesday we will be going down-town for lunch, please join us at 7pm for dinner.  Wednesday we will be blowing bubbles and doing jumping jacks with trained Chinese Circus Bears, and we would prefer you not to come along, as it is a family day. Does all of this work for you?  If not, what time does work?’  Instead we are told vague answers. Pretty much we are left to assume in the neuro-typical world people just wake up and say “Gosh, today I want to go to Paris” and they pack and leave.  We have been told wanting more details on an upcoming family event, than “This Christmas” is unreasonable, venues and specifics (such as a date) will be worked out later.  Well in our world that does not work.  Does it in yours?  Our vacation dates for 2012 have already been decided. 

 By the way our plane leaves at 5:30 or is it 8:30? Oh I don’t know just plan on taking me tomorrow… sometime…right now I want cake, ...no better yet ZaxBys Chicken, hop in the car kids we are off to Arkansas to visit family and have some ZaxBy’s chicken hope we can get some Chick-Fil-A on the way as well!  Oh don’t call, I am sure they will be free to join us, what else could they possibly be doing on a Wednesday night in July or is this June?  Oh, it is August?  Hey, I kind of like the new neuro-typical me; hang on we are changing plans if it is August it is Rib-Fest, Naperville here we come! 





Tuesday, July 5, 2011

the rhetorical questions of life.

Another great title, probably not such a great post today though.

I am tired....the cuter one is worn out. It has been a long day. The boy is studying again for driver's ed. He has a test on Thursday. The whole schedule was messed up today...apparently there was a change and we missed it. We were a smidge late picking him up....he handled the change well but it is late and we still haven't had dinner. Scrach that, he eats and we do pick up dinner.The boy is doing well in drivers ed. He drove again tonight and I am doing well with the only 2 cry outs and 3 stomping on the brakes. Not bad when it used to be ALL the time and the entire drive. He must be improving or I must not be feelign like I am taking my life into my hands as much right now.....I am not sure about this  at all....

Have you ever noticed how meat that is more than 94% lean doesn't taste like a mouth full of salt? I had a couple bites of tacos tonight and the higher fat meat did NOTHING for me. I am looking forward to somehting a little different tomorrow. Or at least not as fattening.Since the big diet change we are noticing that we are much "pickier" about the food we eat. In fact, going to a restaurant can be fraught with peril for us.....most of the time the boy and the cuter one make it better than we can get in a restaurant....we rarely go anymore. If we do go we don't like it. We are getting as sensory as he is. The other night I had meatballs and they were poorhouse relation to the meatballs the boy makes at home. Same with quiche....who needs a frozen one when a REAL one tastes so much better. The boy made his quiche again last night and did such a good job....not a BITE left on the plate.


The sensory and the trying new things food wise had made such a difference with us. we are looking at different textures and all kinds of food and other things that seem to be working for us.

The other thing is what is important and what isn't? Like is going to bed on time ALWAYS necessary or is it something we do just because. For the last week or so we have been going to bed at ALL hours. Staying up late reviewing and studying and helping the boy when he has questions. We are all exhausted, tired and just worn out. Tonight is the first night we are being almost reasonable. I didn't ahve 2 cups of coffee this afternoon to keep me up this evening....and the boys are already in bed. Research indicates that MOST Aspies don't get proper REM sleep and that their sleep studies are rarely on track.

If this is the case it is more likely that I am going to start pushing for the earlier bedtime rather than allowing the "sleep till noon" and blow off the rest of the day lifestyle that I have been observing. Although the cats seem to be getting away with it- not working well for the boy. He needs a ton of structure during the day. Lately we have been using lists for him to follow during the day. It might seem like a waste of paper but he seems to have better days when we give him specific things to do.
IT is still hard for him to focus and I don't list out more than 15 items but he crosses them off as he completes them and moves on to the next thing. Kind of like a "To Do List" at work....Lotus is famous for those things in their e-mail programs.

Oh and just let me know if you have any ideas or comments....I will be happy to add them for you as "Anonomous" Since this is a public blog it may be better to keep your privacy too....just a thought.









   

PRepping for tests

You remember the drill, it is time to study. Usually 2-3 days prior the teacher gives you a review guide to fill out.
The boy in his ULTIMATE wisdom waited until the night before it was due to start working on it. He then asked for help after noticing that his writing wouldn't fit on the page.....at lest he noticed this time...but he had 2 questions done. It took 3 hours, with tutoring to help him find the answers. He found them, except for a couple and We are tired.

as parents, in our ULTIMATE wisdom we are photocopying the pages....Yes we are....although a gross waste of ink and paper it is better than having WORSE issues when the teacher doesn't hand the papers back to study from. What planet did I grow up on? I don't remember gettting help with this kind of stuff. But then I KNOW we didnt have a copier at home or a computer ('cept for my big brother's brains, but let's not go there) and I did without, but regularly turned to the Eyclopedia Britanica and prayed that it might be in there.....

The boy is getting better at this executive functioning stuff....he is remembering to do this stuff the night before it is due rather than wait until an hour before and then scramble.

We got a letter today. Prepping us for a big change. The funny thing is, the person that wrote it obviously is so wrapped up in the new job: we have been informed NOT TO EVER BOTHER this person after the end of the school year. Can't say I am very surprised about the change.....not sure about the boy ....It is one thing to blog about your life and perspective, it is another to send a letter....to people who pay taxes that are off the charts and sound, well, really unhappy.
Normally, the cuter one and I beleive that people who are cranky are really unhappy about their lives. Maybe they arent, I know we are not always OVERJOYED when dealing with certain things but things are what they are. make the best of it, as my Dad used to say, "Laugh and the world laughs with you, cry and you will cry alone."




Maybe we all need a little Popeye to wake the tired blood in us: or at least a little spinach.

Sunday, July 3, 2011

This one is a redo-

It appears that there are those who either didn't know about this blog; never read what I was blogging about in the first place, or possibly didn't care much either way. I have been checking the stat's today and though I should grab an old one so that those who are stepping into this blog a little late might have some addtional information:

March 2010

So yeah, ours is something, to briefly introduce ourselves we will start here. Some of this is from FB, some from a book I have been writing, all of it is real and honest to God a gift for us to learn something.

This is about being the parent of a highly functioning autistic child. Our son is different than most children on the spectrum. Our view point is different as we didn't experience things that parents whose children did go through the general education system did.
Our son is better in some areas, worse in others. Best of all, he looks like your kid. He does, really. He is a bright, intelligent and very lovable little boy. We are fortunate. We aren't saying that there aren't problems or issues or things that really suck. What we are saying is that we are very happy to have a boy that we hope to help him succeed and do well and be independent when the time is right.

I hope you are able to read, understand and comprehend the parental views in this story. Most of the experiences are our own, some we have heard from others and some we agree with and some we don't. This is a view that many don't see, won't see and if they did they would never comprehend what is going on here in our home. Maybe a story like this will give them the idea that our story is different and maybe just a little more compassion and understanding will be imparted in the world.

I believe this introduction to this story says it all.

"I am just a mom, my husband just a dad. Who would have thought that two ordinary Joes like us would have gotten picked? I mean really, who and what are they that they get chosen to have a child on the autism spectrum?

As an infant, I knew the boy was special. As a tiny baby he was only happy when he was hugged tightly (known as deep pressure) all the time. As he grew, he still wanted the hugs but would take my face in his hands and try to direct me with his eyes. What we did I called "eye reading" as he rarely spoke, except to yell and his behavior in public was, well difficult? At one point I was the only person that was able to communicate with him. We ended up using our own made up versions of sign language, eye contact, and quasi-verbal communications.

This story is about all of that fun stuff. The "OMG what am I going to do about this kid", or "How to get through evaluations and survive what a thoughtless 22 year old teacher might say to hurt your feelings". AND it is about 2 “ordinary Joe” parents who are giving it their best shot and just trying to make it all work.

I hope you get something out of this. If not, sorry, maybe you didn't have enough for me to put in, or you are just not ready for the reality of hearing about child who is on the autism spectrum. We aren’t writing this to make others happy, just to understand our son and ourselves.

Don't worry, you will understand eventually, and you will get there. Just read the facts a few times and we will work on you from there.

Seriously though, we live, dream, hope and pray just like everyone else."

Maybe you will read this blog, or maybe reject it, either way....it is a story that someone needs to tell. Why not me and my family?

It is us three, and three cats, we live like everyone else does. Maybe a little more quietly, the phones don't ring that often. Friends aren't here much. In fact, we really didn't have places to go or friends to hang out with until a couple of years ago. Our lives are really mundane. No flair, excitement or camera flashes.

What we do have is a lot of school meetings, lots of information about what is going on at school, things about our kid that sometimes we wish we didn't know. Recently, we were informed that a young lady had accused him of harassment. A teacher aide told our son he did it and he concurred, later he told me he assumed that the teachers aide knew something he didn't. We checked his phone records, he never had called the girl in question. He wasn't even sure who she was....the teacher aide is no longer allowed to speak to our son without someone else present. Can you blame us? Is it hard to realize that a child on the autism spectrum will believe a person in authority over what the facts are? This aide is a person that should not be allowed the privilege of working with our kids. Unfortunately, tenure does not protect the good teachers, just the ones that cannot get a classroom anywhere else.

Pervasive culture shows that kids like ours are seen as "Forrest Gump". To us that is NOT a compliment. It is a painful, cruel allegory that diminishes the intelligence of the entire group of kids that are smart, able to do things and be in activities outside of the regular school day. Our son gets good grades, is in sports and is able to function most of the time in a regular classroom.

It goes with out saying that we work hard with him. He is doing his homework, we are the tutors. My husband and I split up the classes, he does the science and math, I do the language arts and history. It is a lot of hard work. We read books that we read when we were in high school, and we have to remember what we thought of them back then and not through the life experiences that we have had. Reviewing high school and explaining it to a 15 year old Asperger's boy is a new experience every day.

After reading Romeo and Juliet, try explaining girls to an Aspie. Talk about foreign creatures; girls are a nice but weird things....and oddly enough the signals these creatures send off are enough to confuse a parent let alone a boy who has trouble socially. The most recent girl thing, the harassment complaint was completely unnerving to our son. He didn't know what to do with it. He was embarrassed that he didn't even know this girl and yet had to explain that he would never call her because he didn't think she was pretty enough.

Living with a boy on the Autism Spectrum is never dull, we are constantly in a state of flux. Our lives are on the go, we aren't just sitting there....we have schedules, meets, practices and homework. There are days when my husband and I feel like we are back in high school, and barely maintaining that.

No matter what other people say, doctors, or lawyers or teachers, until you live it day in and day out you don't know jack about it and it might be a better thing for you to just put up and shut up. I often ask people to come and stay to see what they would do with our son and how they would handle problems. Regularly they turn us down....we knew they would. Living in this autism world is not the simple thing that most think it should be. Until they do, treating it and helping the patient through a day to day existence should not be part of the treatment plan. coming up with generic stupid terms is no way to solve the problem, it makes it worse instead of better for all concerned.
Look at the furor over the latest change by the American Psychiatric Association. Dumb, dumb, dumb. These docs did not use the brains they were given and instead have made it more difficult for services to be determined. Thankfully, there are famous people, like Jenny McCarthy, and Jim Carey who are dealing with a child who had issues,and are bringing our issues out into the open. How lucky can we get? But look at her situation, it sounds like a misdiagnosis and the poor woman had to deal with that pain and then the pain of the public, and if he is cured of the other the joy behind that. Holy cow, how much can one person take?

Sadly, when I get yelled at by my son, daily for weeks, and am told to "Be patient with your child." All I want to do is tell that person to "Stuff it. You come try and then tell me what to do." Most won't come try, as I mentioned before, and their reactions are what you are looking for....what will they say when you come in to a room and decide you need a break. Fine, do whatever, just tell my kid not to yell at me anymore. I can't stand it.
Sometimes things change, then sometimes they don't it just depends on your kid, the day and what happened at school.

Really, it is all a matter of working things out. Working out the idiot teacher's aides, the stupid little girls and the other social factors that we have to deal with. Dealing with other parents, trying to make friends as adults and do what we need to do to just get through a typical day. Our days are like no other and although brief, I believe this story has given you an idea of what we get to do regularly. Lucky us.

Another year another TOC

The TOC.....long lines, no shade and over heated. Typical. Put it this way unless it is a chef rock star god type person we will not be attending next year. The thought of going back isn't appealing- although the boy would probably run for another shot at the Lincoln Park Pizza Parlor that I have already forgotten the name to.

He did really well, although the junk food messed with his stomach and it will take him a couple days to get things "working" again. He is even noticing that a meal of deep fat fried foods will mess him up for a couple of days. Although this is not a topic I normally want to discuss with him it does come up when he is taking a while in the bathrooms. At least the port-a-potties are out for him. Thank goodness he has standards- I believe he is anti-outhouse too. But that is only after an experience in an outhouse on vacation.....and the fact that he thought the trolls would get him if he used an outhouse......I don't know if that is viable any longer.

He noticed that the fruit was not in the diet today....he was very dehydrated although he had plenty of water....I think it was the lack of fiber and what he is used to during the day.....that and no sugary drinks helped but he did need to leave a bit early....as soon as we got away from the sun and lack of shade he did much better....the big concerns we have with him now are the meds. He has been on them for a while and although they work I still get worried about how they are affecting him physiologically. Last year some VERY expensive blood tests were run (the doc must think we are made of money) but everything came back within the normal range.
We were fortunate at least there was no damage that way....

The back of my mind I keep wondering if he is still sensitive to things; heat, sun, certain foods. I think I almost prefer how we did his foods last year....we took ideas from Jessica Seinfeld and pureed veggies to put in meat and other side dishes. He never knew that he was eating almost all veggies. Now he is so used to trying new foods that even things that might have grossed us out several months ago is now a regular item on the table.

He loves his fried foods as much as anyone....I wonder how much his fried foods are loving him???



Time to take the gunk off

getting gunk off of anything is dreadful....I am almost a professional gunk remover. I have to be with 3 charming kitties in the house, the boy and my husband.
Most of the time it involves repeated applications of whatever it is to get rid of whatever the kitties did....lately it has been "Trouble Time" he has been a little more mischevious and he is so delicate.....he is big and kind of goofy but needs lots of love and attention. Since I have been making MORE "Trouble Time" in the AM I am finding that he doesn't make as much gunk around the house.

Being without power for 4 days means that we had MORE gunk; mostly what we didn't see. Candle light at night is so lovely....and it hides a mulititude of little kittie sins all over the house. On Friday eve we had finally caught up with everything. Little Trouble finally calmed down a bit, and we finally got everything together to finish cleaning up the ongoing messes.

How often do we not pay attention to the reigning Aspie of the house? Do we let go of abberant behavior because it is easier....

I know I let some stuff go yesterday, after a well needed glass of wine at dinner (I know drunks say they WA NT it; I have wine when I NEED it after a long day). I did let some harmless behaviors go; and relaxed with people who REALLY wanted us there,,,,,we are so glad we went down after the first party to the second party......we were lucky that we got there earlier than we had expected. Anyway, the boy was messing on the internet and looking up park maps.....we enjoyed looking at them too and talked about places we would want to go to if we had the money. What we did discover was that we really DO need WiFi....what an awesome convinience.....totally cool to have it at home.

We took the evening off.....then proceeded to go home and plan a fun day today....hopefully.
It would be nice if the plan took off and went together.

Saturday, July 2, 2011

laughing with or at

You know when someone is laughing WITH your kid or laughing AT your kid. There is a sound difference.....it is very different.
It is worse when it is supposed to be your family and they all think your kid and you are somewhat on the lower end of the intelligence scale anyway.
Unfortunately for them that is not true.

Over the years I have been told that I must behave myself, I must accept everyone for who and what they are I must respect my elders and that is just the start.

What I have learned is that people who have a disability are people too. They are silly, fun, thoughtful, kind generous souls who I am friends with and I love dearly.

Today I saw my son get laughed at. How do I know? because when I pointed it out suddenly what the boy did (stuffing himself with cake) was not so funny any more. Encouraging the boy to do it was one thing; for pete's sake these are grown adults here....so let's encourage the kid with a disabilty to make a fool of himself because it is something to laugh at later? There are enough "dumb boy" stories in the family, lets add some more......( =and let's hit up with the aunt who is a big witch too....that always helps)

God, I and I know they video taped the boy and will post it all over the place because they are mad at me for pointing out to them .....that it really wasn't kind, funny or helpful. Did I have to do this?  Should I ignore the fact that my son was going to throw up cake so the adults at that table could watch it and tape it?
NO I didn't; but it is MY job to protect my kid and what I saw today made me want to run screaming in the opposite direction. I will  make certain that the boy doesn't have this experience again though. Training him to keep away from people like that is the best I can do.

THAT is when you are laughing at someone and not with them.
Watch out- the parents of the disabled kid are watching you and your behavior is not only harmful to your disabled relative, It is hurtful to the parents too.



insomnia

There are really a very few times I have insomnia. Sometimes when I OD on the caffiene, or just stress about IEP's or just life in general.....even sometimes the occasion for it is over the boy. Sometimes it is regarding someone else or other people entirely. Rarely is it because of "happy thoughts"; my mind is racing into overtime I am not able to stop thinking about any number of things.....

This evening we were at dinner. With my family this time; this is a diverse group. The table was strangely quiet....or at least it appeared so. I am thinking that it was because the boy, myself and cuter one were there. We talked about any number of things. I so wanted to re-assure my sibling that we would NOT be attending the upcoming wedding reception(s) (that we haven't been invited to yet). not because we don't want to go, we would. But we wouldn't want to mortify anyone with the thought of "Oh look at who so and so is related to." Although the boy's conversation skills have improved, it is unlikely he or we would be welcome in a "high class environment." Sometimes is it just better to avoid a given situation that could be viewed as a total negative through and through.

Maybe I am being hyper sensitive tonight. Stemming from being told that the cuter one and I have a home that is not good enough for a planned family party. IT is OK to come over here for a brief while; but any "planned" activities MUST be done elsewhere (I was informed of this quite firmly several months back).

OK it bothers me- Still.

Our home is small. With a BIG back yard. We love it. Although the house is small; it may not be much but it is our home....for many years it has worked for us. It is not showy, but we have lovely gardens.....space to enjoy and several areas to enjoy in the yard. Frankly if this person hadn't hurt my feelings, I many have been willing to open up the house. But the condescending attitude that our little house was unacceptable was just too much.

On the positive, at least it is now confirmed that we don't have to ask them to our home again. It is too small and not enough space for them. In fact, at dinner tonight, it was funny, the boy slipped in an invitation to two of his relatives. My instant response was, "Absolutely NOT. We don't have enough room for guests." I think the vehemence of my response surprised several people. Maybe not, normally we are the first one's to tell people to come over. It is rare that we will say "NO, we can't do that."

Oddly enough, the boy is normally allowed to invite whomever he wishes to our home. We usually have a pretty lax open door policy. Except when our home is not good enough for a planned family party. That is when the doors and windows are closed the patio shuttered and the back yard off limits (It was sprayed for weeds....can't walk on it until Monday, no Tuesday, no maybe next year). Maybe the policy here will change, but I doubt it. In fact, I am hesitant to invite anyone here again. Maybe they are just saying that the parties are nice out of pity, as the house is small, the rooms are tiny the yard can be damp.

I feel kind of guilty. Maybe the fact that we have invited people to our home has been in error. We shouldn't have assumed that this house is acceptable just because we like it. We don't have a McMansion, nor anything that would say, "Hey let us show off all our money to you peons". I was talking to a neighbor today and she asked me what was wrong, when I told her....she claimed she was shocked. She couldn't count the number of times they had been to our house for parties and it was very nice and they enjoyed it very much. But maybe she was just saying that to make me feel better.

After my recent experiences with this family party experience I have completely backed off from the idea.....I am a little nervous about the upcoming party we have discussed having and are planning. What if the house looks like we live in it? OMG what about the 3 cats? What about the messy living room....the dining room has my scrapbooking stuff in it. How bad is that? I want to finish the boy's High School book and I am behind 2 years- I have pictures and paper everywhere. What about the floors (old wood, some ceramic tile, laminate that we did ourselves-Oops that isn't acceptable either), the laundry room- wow people do laundry(?); the life we have in this house.

OMG - it isn't good enough for people I am related to.

That is just sad. Those people whos supposedly love us for who and what we are have to be "firm" and let us know that our house is not good enough to be invited to. Our yard is not acceptable, it will downpour (when? hasn't yet?) It will be too hot (FYI- climate here is changing for July it is quite comfortable?) - hmmmm now Act's of God are seen as a problem.....

Fortunately for them, they don't have to be subjected to an invitation here again. Nor do we, the cuter one and I, have to make a big effort to do anything but show up when they are in town. This boosting of the economy means that we don't have to clean the patio right away....no one but us are going to be here.

Our home is not good enough for them.

Maybe it is a blessing for us after all- the less work we have to do and less time we have to spend doing it could be seen as quite the bonus........

and here I was feeling kind of sad about not being good enough.