Saturday, March 30, 2013

Why All The Judging?

http://www.johnburkeonline.com/judging-is-fun/

The one thing I was not prepared for when I entered the Autism blogging world is all the judging. I mean it is rampant. I knew by doing this I would be putting myself and my family out there and comments well that will be part of it. The judging I was not prepared for.

First you have the judging by your own family and friends. I can deal with that. Typically if they are mad about something I wrote or think it's about them (most of the time it's not) and get all huffy. My only response to them is if you are so offended by what I wrote what have you said or done that makes you think it's about you? Usually they will be quite then. It's one of two reasons a. it's really not about them or b. they don't want to admit to what they have done.

Second is the judging by other bloggers. Wow is that one rough. These are people who don't really know you passing judgement. We all have our own journey here.  There are a few hot button topics:

There is an expectation that parents will grieve after dx. Really how can they not when all the media info is doom and gloom. Some don't. No matter where you fall someone will have something to say about it. If you grieve you don't accept your child. If you don't well you just don't understand autism and something must be wrong with you as a parent. I mean really how can a dx be a relief is the stance. Well for some of us it is a relief. We know what needs to be done now.

Therapies. Oh that is a fun one. Why can people see that you do not need to do every therapy under the sun, running from Dr. to Dr. to be a caring loving parent. Really some people think if you don't do it all you just don't care. Well Therapy is not for us. We tried some I wrote a whole post on therapies here.  There is no one right way. You have to admit some so called therapies are batshit crazy abuse. No if ands or buts,  like this. Now as long as you are not abusing another person, guess what I'm going to stay out of what works for your family.

Autism Charities: This one can be bad. Really I don't give a crap who you give your money to. You can flush it or burn it in a fireplace. I don't care it's not my money so I have no say. Every charity has their own beliefs, values, and ways of doing business  Yes I will share what I think of them. Does that mean I want you to automatically listen and stop supporting. No. Would I like for you to do your own research and make choices that best suit your beliefs and values. Yep. We may differ but I can't and wont tell you what to believe and who to support so I ask the same courtesy applied to me.

Parenting: No matter what once you have kids someone has something to say. You work or don't work. How you feed, how you discipline, etc... It's enough to drive you to drink.

The newest one I have been privy to is Autistics vrs parents. OK I'm going to say this now, this one can just be dumb sometimes. Not to dismiss any valid arguments from either side. Here's the thing people need to get. As parents we need to listen to and really hear what Autistics are telling us. They have some very valuable insight. As Autistics we need to realize the parents are raising the next generation of Autistics so we need to hear them too. Different topics will hold different weights. The them vrs us personally leaves me worn out and frustrated. In the end nothing but a bunch of fighting is accomplished. I'm from the mindset that every person on this earth has something valuable and valid to say and brings their own and different experiences to the table. In my perfect world everyone would be treated with the respect they deserve.

I guess what I am saying in my long rambling post is the judging has got to stop. I know it wont. It never will. Everyone has their own experiences and views of what is going on. Just like no two people ever read the same book. No two people live the same life. We are all different. We wont always agree, but if you don't agree that's fine. If you can't disagree respectfully shut your mouth and move on. I read stuff all the time that rubs me the wrong way. Sometimes I may make a comment but usually I just let it slide. If a page consistently posts things I don't agree with, I don't make nasty comments, I don't report it (unless its really bad) I just unlike the page and go on with my life.

I'm still trying to find my place. Where that is I don't know yet. I may never know and you know what that's OK  All I ask is for respect and I can guarantee I will respect you. Even if we disagree I still respect everyone's ideals and opinions.

http://www.google.com/imgres?hl=en&sa=X&rlz=1C1AFAB_enUS494US494&biw=1280&bih=656&tbm=isch&tbnid=QnihL2mnqDcjxM:&imgrefurl=http://talkshow2.blogspot.com/2011/06/life-without-judging-others.html&docid=08SGZmLHnFKqNM&imgurl=http://2.bp.blogspot.com/-MwgzewUU_uE/Te4KFq54FzI/AAAAAAAAAHU/9vzb4yBuQ9k/s1600/judging-others.jpg&w=809&h=771&ei=dr9VUfb0HsOZ0QGij4GwDA&zoom=1&ved=1t:3588,r:1,s:0,i:167

Friday, March 29, 2013

Autism Speaks, I Want To Say

The 27 minute documentary put out by Autism Speaks is supposed to be what Autistics want to say. Really A$ you got it all wrong. Its nothing more than parents and experts. It starts with a young man using AAC. I was hoping really I was that finally you got the message. Finally you were going to include Autistics in the conversation. Boy did you fail.

After the first young man was shown a "expert" comes on the screen. He says nobody "knows what autism is." "It is a nightmare imposed on children" and that "people are so ignorant that these children suffer." Those are his words not mine. Fear mongering at its finest  You don't say people are ignorant to autism you had him say ignorant to the suffering of  the child. He goes on to autism is on rapid rise and the good old more children will be dx than aids, cancer, and diabetes combined. This makes autism sound like a childhood disease. It's not just children and its not a disease it's a different neurology.

Then the parents and the something is not right. More crying. We don't know what to do. More crying. He's really sweet for a autistic child. You have to learn how to cry. Swallowed by his autism. If they are what they are. That only adds to the perception that there is something wrong, they are hard to deal with and they shouldn't be sweet.

The whole video completely ignores Autistics. Sure they get a few sentences. Of course The parents and the expert are the main focus. Cue the crying mother, cue the experts. Your expert himself says those who have access to technology an and shows great understanding. OK so let them talk. Let them tell us their story. Cue even more crying mothers.

I'm not saying throw the parents to the curb and ignore them but please bring Autistics into the conversation. If you really want to level the playing field talk to Autistics. You want to know what may help a autistic, hey ask them. Stop demonizing Autistics and autism and start talking. Start having real conversations with Autistics. This video was not what AAC users want to say. This was what Autism Speaks wanted to say.


Thursday, March 28, 2013

Light It Up Blue: Not This House

April is almost here. This means the big push to light it up blue. Hey I'll admit it in years past we have done it as well. Most if not all people that do have good intentions. They want to show their support. Really though when you light it blue what are you really supporting? Light it Blue is a Autism Speaks campaign. With any campaign comes fundraising. They sell special blue bulbs at home depot with money going to AS. Build a Bear has a blue bear in April and yep money goes to AS. Multiple fundraisers will be happening and that's right all the money goes to AS. So Light it up blue is not about awareness or acceptance, just another way to make a dime.

I will leave it up to each person to do their own research and decide for themselves but AS does not spend their money well. Very little money goes to directly helping autistic's. Most of it goes to research. You see AS thinks that autism is a disease and that it should be eradicated. Just watch their commercials. They use music and wording that puts autism as a bad thing.

I could go on and on about them but I will save you from my ranting and get back to the blue lights. Like I said I have done it in the past. More because the kids wanted too. Here's my biggest issue with the whole light it up blue. It's the bugs. It's a proven fact that blue bulbs attract bugs. (what color are the lights in bug zapper?) Like insane amounts of bugs. Really AS had to know this with all their scientists  not one went wait hold up this will attract bugs. Just what we all want a bunch of bugs on our door step. I'm sure my neighbors would just love me if I got them to change their bulbs and then they were infested with bugs. Then again maybe I will have them do it so the bugs stay away from house.

That's not a blue porch light it's a bug zapper.

Friday, March 22, 2013

Making a Video and You are Invited

Hi All,
April is coming up again and Roger and I will be doing another video. This year we are doing it a bit different and we need your help. Come April there will be plenty of videos saying what autism is all the clinical stuff. our plan is to put autistic voices out there. That's where you come in. This is what we are looking for.

1) autistics of all ages, children, teenagers, adults we want everyone. Autistics are not just children we want to show that.

2) a quote from you: what do you want people to know about you, autism, anything you feel is relevant. We want them to hear your voices not the doctors.

3) a picture of you from any angle.

4) Please let me know how you want to be quoted. (name, intials, page, age if you don't mind.)

You can send in a quote, a picture, or both. Whatever you are comfortable with. Email it to noguile04(at)yahoo(.)com

Deadline April 5,2013

The song Roger chose is from one of his Fav bands. Shooting Star by:Owl City

Last Years Video

Not Easier Just Different

This started as a comment to Jessi over at Deciphering Autism & My Son to this.  Go ahead go read it I'll wait...............
upsidedownchristianity.blogspot.com 

This is for all not just Jessi who I adore. I left her a comment but stopped short I didn't want to overrun her post and leave a novel. What I started saying was "It doesn't get easier its just different. Y'all will become more confident in your abilities to ask for and receive what is needed. You will learn to negotiate all the bureaucratic red tape. There will be good teachers and some bad. People will come in and out of your lives some good some bad. Does the hurt of being ignored ever change no sorry it doesn't."

Its True: It never gets easier it just changes. Preschool turns into elementary, elementary to middle, middle to high school, etc... Life goes on. Everyone and everything around you keeps moving. With every new stage in life comes new and different challenges  Over time you may decide some are not worth your time and those challenges will go away. The thing is when one challenge is left behind another is around the corner.

Not all challenges are going to be bad. Some may drive you nuts while you are in the thick of it but in the end you look back and see I did that! Me I did that! Some of the best people you meet you are going to find at the worst times. Thing is they are the people you want around. They see the stress, frustration, pain, anger but they stay. They don't say oh too much for me gotta go. They stay. The ones that run let them run.

As much as the false stats say autism destroys marriages. The marriages I have seen in autistic families are stronger than any other. No matter if it is a autistic parent or autistic child. They are strong.

Yes while people like to say now while your beautiful child is failing state tests, not socially integrating as they like, showing behaviors the school doesn't like, any other negative you can think of: "They will never.... fill in the blank". They will. Your beautiful wondrous child will thrive to their very best. It may not be the same very best as say their brother or sister but they will be their best self.

Pain, frustration, challenges  anger, pride, joy, love. They are all part of life. Autism adds some extras in there. They make you who you are and who you will become. Part of it is how you choose to act. Everyone needs a pity party sometimes. Go for it but make sure you get back up and keep moving. You lose a friend go ahead morn that loss but keep moving forward. When you look back it is not to dwell or see what you would change. Hindsight is 20/20. You look back to see how for you have come. How much you have grown.

So The answer is no. It never gets easier just different.

Thursday, March 21, 2013

Ignored

(This isn't a pity me post it just is what it is.  We have been living with autism forever.  Granted we didn't have a name for it until a few years ago autism was part of this family. Integrated into our very roots. When the first diagnosis came for Roger people balked oh that's not right, the doctors are wrong, you doctor shopped until you got it.  Yes we love nothing more than spending hours upon hours with doctors. It's great fun. Then Lucy's came. Even to this day most of our family will not accept it. Not accepting being in the dark that's their choice. I can't force anyone to do anything.)

Ignored, that's what we are.  Ignored by family, ignored by past friends, ignored by neighbors, ignored by everyone.  In the time before Facebook it would not be right in your face.  Yeah so you haven't talked to your sister in a while, oh well they live a ways away. Except now with Facebook it is right in your face.

They share a blog post by another writer, with the comment so this is what autism is like I had no idea. Yeah I want to scream at them open your eyes we are right here, we have always been right here in your family. You choose to ignore us.

They re-post a silly meme about special needs moms tagging all their friends with kids of different needs but leave you out because well you don't really know what it's like. You don't count. We are nothing. Ignored

Every post about cancer is a re-share, autism no can't share that because you know cancer that's real. Ignored.

They re-post just about every awareness post their is except yours. Cancer yep lets share the heck out of this. Autism oh no I can't do that. Ignored

They like all their friends photos of kids except yours. Ignored

They decline invitations to dinner, holidays, and birthday parties, you live to far away. You see the pictures of their "impromptu" party. Ignored

They visit a friend a few blocks away from you but never call or stop by while they are in town. They are too busy. You see the check-in. Ignored

They say they don't know what they have going on when you call to say you will be in their part of town in a few days. We will see they say. Code for I might have a better offer come up I can't commit to you. You see the invites to others lets hang out this weekend. Ignored.

They have a party, you are not invited. You see the pictures. Ignored.

They wear the pink, do the walks, share the fundraisers that everyone is doing except yours. Ignored.

You ask for help, they are to busy sorry. You see the lazy day at home post. Ignored.

In the days before Facebook you would never know the extent to which they ignore you. Before Facebook you wouldn't see the parties your not invited to. You wouldn't know about the times you were told oh we are just staying home tonight that the pictures show otherwise. 

Without Facebook you wouldn't see just how much you don't matter to family and friends. That your differences are worthy of hiding from everyone because god forbid a friend finds out your family member is autistic. 




Tuesday, March 19, 2013

Winner!

Jim , Eric,  and Cheryl. Since only you three entered my little contest I have decided you all win. Eric your store name was chosen. Sensory Soothers. 

I have also messages all winners as well.  I am hoping to launch the Esty store on April first.

Friday, March 8, 2013

Name My Esty Store

I have decided after some encouragement to open a esty store. I will be selling weighted blankets and lap pads made of duct tape to start, then probably add some other sensory items as I go. Don't laugh Duct tape solves all.

Here's the thing I need a name for my store. I'm stuck. So what better way than to let y'all choose. Added bonus I am making it a contest. I will accept names either here on the blog or Facebook until next Friday March 15,2013. Winner will be announced on Monday March 17, 2013. Both on Facebook and here.

Then the kids and I will pick our favorite name. What's in it for you? The person who submits the winning name will win a lap pad.  Custom to your desired weight and color or character.

So what do you all think?
Example of a blanket



Saturday, March 2, 2013

The Day I Told a School Expert They Were Full Of Sh*t

*this one will be a bit ranty. Is that a word? Oh well it is now. Seriously this really happened and yes I told the woman she was full of shit*

Every year I go to a special education conference for parents, teachers, and other community members.  Every year it is great. It is a all day event with tons of info.  They are even kind enough to put the power points from all presentations online because well you can't attend them all.  That being said its a given that you may choose something that is boring or just not what you thought it was going to be.  Once I got stuck in a two hour lecture on laws.  Yeah it was boring, but I also learned a lot.  I also must say I have had personal Experience with this school district and it has been great.

Well great until I met the head of advanced placement.  Who is also supposed to be the expert on twice exceptional students.  She has some impressive degrees I'll give her that and she should be proud of her hard work to earn them, but degrees don't mean you have a clue.  They don't save you from using bad or outdated information.  

The season got started ok, a few minutes in my Facebook status was: "So twice exceptional speaker needs to go back to school. Must have got her doctorate from a cereal box. Special Ed dose not mean failing, why am I stuck at the back of the room and can't leave." Yep the only way out was the front of the room so I was stuck. Lucky for me though someone in the room had a cell they were using as a Internet hotspot so I had Internet.

So the session continues for about a hour. At the end she opened for questions and really didn't answer anything and anything she did it was wrong.  Someone asked about autism and advanced placement and her response was "oh that doesn't happen unless its Aspergers." umm wrong lady. I keep my mouth shut. Then they started on IEPs and 504s she didn't know the difference.  OK a little scary that the twice exceptional expert doesn't know what a 504 is.  Still stayed quite.  Then someone asking about how to get a IEP she says "well you don't want that in high school it will effect the child's ability to get into college."  OK that did it.  I said bullshit.  Didn't realize I said it out loud until the dad next to me looked at me and the speaker asked if I had anything to say to her?  OK she had been rude to the parents during the questions and pretty much holding the line that no one really needs a IEP because accommodations can be made without it. Ha Ha we all know how that goes.

Well my response was "with all do respect you are full of shit.  Everything you just said about autism and IEPs are lies". I then went on to say a IEP not only guarantees my child gets the accommodations he needs and is traceable but the IEP gives him the supports he needs to reach his potential and get into college not stop him.  Without it he will fail.  Scaring parents with falsehoods that if you push for this Johnny won't get into college is crazy.  Oh and by the way my child has tested into the advanced placement high school, has a IEP, and he is moderate functioning autism.  I then shut up and she moved on.  As soon as it was over I left nothing more said.  Maybe I shouldn't have but really the smirks from the parents who have been through the fight made it all worth it.