when "friends" dont show up

Today Roger and his "friends" had plans. 2 boys were supposed to come over and walk to one of their houses.  Well they didn't show up.  While it seems small to others part of life my child doesn't understand.  He wants to know why they didn't come when they said they would.  I have no answer and I can't fix it.  Instead he went to his room.  How do you help someone who takes everyone at there word process.  While the other parents just deal with a mad kid I have a meltdown on my hands.  Things once again did not go as planned.
Luckily he has been distracted on planing his Halloween costume for next year so this too will pass and on to another day. 

We Are All In This Together

Autism is a spectrum disorder.  Kid's are everywhere on the spectrum and figuring out where they are can sometimes be confusing.  I hear a lot of parents fighting back and forth that their kid is worse.  I also hear oh you kid is high functioning so you have no clue.  Well we do have a clue.  As with it being a spectrum the parents and families have a wide range of stuggles they deal with everyday.  Just because someone doesn't have the same stuggles as another does not mean they are struggling.  We need to support each other and not compare and fight over who is worse.

I have heard a few times your son doesn't look like he has Autism.  Or he must have a low level of autism because he is mainstreamed in school.  What does a kid with autism look like?  And where did you get your medical degree?  As for his level in some places he is high functioning and in some he is low functioning.  You cannot look at a kid and see where they are or what their struggles are.  Many of their struggles are not the type you can just look at and see right away. 

I just don't feel that it is anyone's place to tell someone that what they are doing is wrong or oh that doesn't work.  Every kid is different and everyone has different beliefs.  It's been held against me for saying if there was a magic pill to fix it all I'm not sure I would take it.  If it could help him not struggle so much but keep him the same then yes I would but if it would change him into a different person I wouldn't that would not be my child.

I'm one that believes medication is a last resort in our case.  In someone else's case it may be needed and be one of the first options.  Just because you meet one child with autism doesn't mean you know them all.  You know one child with autism one set of struggles, one set of treatments, and one families way of dealing. 

I guess what I'm trying to say is we are all different and hold different thoughts and beliefs.  There is nothing wrong with that.  Whats wrong is when the attacks start just because the other person thinks differently.  Again we are all in this world of autism together.  The bickering, fighting, and personal attacks do not help our children one bit.  If we want answers and support we need to stand together if for nothing else but our children.

Read This

This is another blog post that says a lot. It really hit home with me.
http://momnos.blogspot.com/2011/02/asd-and-ptsd.html

Heres an interesting article as well

Autism Moms Have Stress Similar To Combat Soliders

Science Project

Roger had a science project due this week.  They were given different options for their presentation and Roger choose a display board.  His chosen topic was nuclear disasters and Chernobyl more specifically.   He spent a lot of time on this project including four hours last night putting it all together.  He was having some trouble with the written parts but in the end the pictures he chose made up for the lack of words.  He basically told the story of Chernobyl in pictures, some of the pictures he choose there are no words to describe.  If anyone has any doubts that he is visual I'm sure they will be gone when they see his project.  He took it to school this morning, so now we just wait to see what his grade is.

Finished project

These are some of the pictures he chose to use on his board. They all came from Chernobyl Today a Creepy Story Told in Pictures

bridge

ferries wheel

school hallway

Pictures inside a school after

Friends

Friends are pretty much a foreign idea to Roger.  While he knows what they are he doesn't really care to have any.  He has a couple of kids that he talks to at school and every once in a while one might come over.  It's not that he doesn't want friends it's that he doesn't know how to initiate it.  

Lately he has been talking about his upcoming birthday.  In the past when he went to private school and it was the same group from preschool he would say what he wanted to do and we would just invite the whole class.  Now his class is much bigger so we can't do that.  Last year he just went to the movies with cousins.  This year he has said that he wants to go to the movies again and invite a couple of boys from school.  This is the first time that I can remember that he has said he wants to invite other kids outside of the family.  He usually just has me invite who I'm going to invite and he just picks what he is going to do.
If you ask him about friends he will say yeah I have friends but I'm the weird kid.  It doesn't seem to bother him at all.  When asked by a dr. if he had a best friend he said no why would I?  I've been told that at recess he will sit off to the side and read a book.  He has told a teacher that there is just too much going on on the playground for him to figure out anything else to do.  At least he is beginning to learn how to voice whats going on slowly.

apologies

I must apologize for some of my formatting errors. I am new to this and have messed up on the colors and don't know how to fix it. Please bear with me while I am learning.

Real Friends

I have heard that there are time's in one's life that you will learn who your real friends are.  It's not a pleasant experience but at least you know.  When I got pregnant with Roger at 19 I had a few friends drop off.  When I got married the first time a few more, a few more when I got divorced (like divorce is catching), then some more when I remarried.  I have to say I think the most drop off came after Roger was diagnosed.  It's like since they don't know what to say they don't answer the phone or try to contact us.  I mean come on guys he is the same kid he has been for almost 12 years only now we know why he acts like he does. But hey if that's how ya wanna be fine your loss not ours.

New title

As some of you may have noticed the blog has a new title.  It was called Autism 101 a families perspective, but a friend of mine Vic helped me come up with a new title. Ok we were talking about Roger and it just came to him and I took it. Some may have noticed that Roger's name has changed. I think he deserves some privacy so I changed his name.
What does having No Guile mean? well it means  

To be without guile is to be free of deceit, cunning, hypocrisy, and dishonesty in thought or action. A person without guile is a person of innocence, honest intent, and pure motives, whose life reflects the simple practice of conforming his daily actions to principles of integrity. They also will talk about what they want to talk about without any concern as to what the other person feels on the subject. This describes Roger. So this title seemed to fit better than my original one.

Other People

We all know that our kids or family member's can sometimes do things that annoy other people.  Maybe it doesn't annoy us for the majority of the time because we are used to it and know that they have no control.  Case in point we went to the mall a few days ago for haircuts.  For whatever reason Roger could not sit still while waiting for his haircut.  So he walked in circle outside while he waited and them walked in circles when we were done and waiting for his older cousin to get his cut done.  Part of this I'm sure was because he wanted to go to gamestop which was across the hall and was afraid we were not going to go. 

Later we went back to the cousins house and Roger has a movement disorder.  He has absolutely no control over his movements.  For the most part they are small movements but when he gets anxious or stressed they become more pronounced.  Well he was sitting at the table and he couldn't stop tapping his foot, his cousin was so annoyed she yelled at him to stop, which of course made it worse.  If he tries to stop the movements they get much worse. That was just her frustration at the moment.

I don't blame the other kids when they get annoyed. Rogers brother, sister, and step brother get annoyed when he wont stop doing something, or he is so fixated on something that he's in his own world.  Or how about when they are trying to talk to him and he just wants to talk about what he wants to talk about and it just goes nowhere.  It's a hard thing for kid's to understand and deal with.  As we are working to help Roger we have to remember the other kids need help understanding everything that's going on as well.

The ride

I've have heard this is a roller coaster ride that starts with hearing your child has autism. I think its the same as if you were told your child had any other sort of problem except in our case it is not a death sentence. At the end of it all I have answers and while I'm still on a roller coaster ride I switched rides. After the first ride I was on I will take this one anyday.
The ride during all the testing was bad. After his first MRI I received a call from the neurologist and she said well the movement disorder blurred the films but they saw something we need to do a sedated MRI to see what it is, all we can tell is that it is some sort of cyst and we need to use contrast and see if it lights up. All I could say is what if it does and the response was I don't think it will but if it does we have to look at the possibility of a brain tumor.. Another MRI couldn't be scheduled for almost a month and then two weeks of waiting for results. Luckily we were in the lucky group its a benign cysts that does not affect anything. It didn't light up.

After that they sent us to cardiology who wanted to do an echo-cardiogram and during that the tech left and got a Dr. Asking what is that and pointing to the screen? That Dr. left and got another Dr. They are all talking to each other but not letting me know anything. Finally one of them seemed to realize oh wait mom's right here, sorry to scare you it looks like an extra vein but there is no problem. We do want another more senior cardiologist to read this because I just have never seen this before. They finally call back a week later and say its nothing just an extra vein that has been seen in people and has no effect on him. We just want him to be seen by use once a year to keep checking.

My child has had more tests run on him and has been turned into a pin cushion with Dr.'s looking for what was wrong. We finally know nothing is wrong he has autism so the tests have stoped. My friends all joke well if he has an extra vein on his heart and a cyst in his brain he must have some superpower that we don't know about. Well maybe he should.

Now I'm on a different ride. This is a whole new world where all of the sudden its how affected is your child? Oh he's high functioning (he's in the middle) so you don't really know what autism is. Really we are all looking for the same ting how to help our kids. If they had cancer god forbid we would never say well my kids cancer is worse than yours so I deserve more. Just because my child is not on the severe end does not mean we don't have our struggles they are just different. I have my days where I don't have a clue what I'm doing but I think every parent does, kids don't come with manuals. If I say you could give me a magic pill to make his autism go away I wouldn't do it that would not be my child, that would not be Roger.  I'm not on any side I'm just trying to do whats best for my child. While reading another blog Diary of a Mom she said something along the lines of why are we spending our time hating the disorder when we should spend that time on our child. Or that's how I interpreted what was written.

We all know what it's like to hear yes we can help but our wait list is 8 months long. Or we can't even get a call back.

Plans change

The hardest thing of all is explaining that plans change. Case in point the middle school had an orientation night where a food place was serving food. They had sent the menu home weeks before and Roger had deiced he was going to have chips and queso. When we got there that was not on the menu. Of course hes like but it said , they are supposed to have. Just couldn't get him to understand that for whatever reason the menu had changed. He finally settled for a bag of bbq chips from the vending machine but that was after he wandered the halls for a bit. He had also learned that night that instead of two electives because of a class he may be put in he may only get one elective. He doesn't do well with change but at least we are finding out now and not the first day of school.

We have started trying to have him have a plan b and even a plan c before we go somewhere that way if the plan a doesn't pan out he has already thought of other options. Sometimes it works sometimes it doesn't. I heard somewhere that this is a rollarcoaster ride that never ends.