No Guile: Life and Other Stories from Autism

Mommy Wars 2.0

2013-04-22T11:36:00.001-04:00

I'm warning you now what I'm about to say is not a popular opinion. By far I am probably mostly on my own. So read at your own discretion.

Mommy wars, oh the fun of them. I'm not talking about the original mommy war stay at home vs working moms. I'm talking about mommy wars 2.0. Special needs vs typical moms. Typically it is seen that special needs moms have a harder fight than typical moms when it comes to kids. I don't necessarily see this as true. I see our challenges as special needs moms as different not always more challenging than typical moms.

Now before you get all up and arms and leave nasty comments hear me out. Sure typical parents don't fight the schools over IEP's most don't even know what an IEP is, but they still fight schools only over different things such as bullying. They may not have the same behaviors special needs moms see, but they do see behaviors. Special needs moms are running all over town to go to appointments, typical moms sports. While they are running to two very different things they are still running, still juggling multiple schedules. Then add multiple children to the mix.

Every family has their own struggles, problems, and challenges Many of them we will never see or know about. Each family though has the same goal to take care of their own. It doesn't matter if the goal is the perfect IEP (ha like that will happen) or just to get the school help stop the bully. The goal is the same get the best for your child. Mommy wars don't solve anything. Really all they do is divide parents even further. Frankly I don't have time to compare my problems to yours to see who has it worse. Lets call it a draw you help me and I'll help you.

We all have challenges and no one has the right to tell someone else mine are worse than yours. Or that yours are not that bad. I've actually had someone tell me while I was in the midst of a self injury issue that well so and so's kid has cancer that's real problems. Really did that solve a thing? No it just added to my stress of I'm trying to get help and I'm getting snide comments instead.

Here's an example for you you tell me whose challenges are worse:

Family A- Special Needs Child

Family B- Pregnant Teenage Daughter

Family C- Drug Addicted Son

Family D- Single Parent Family

So who has it worse? I don't think I could make a call each family has to do what they need to do to get through their situation. They have their own unique challenges.

So lets put the pitchforks down and try to work with each other not against. Don't dismiss someone's problem try and understand. While it may seem minor to you to someone else it may not be. So if all you have to say to someone reaching out and asking for help is a snide comment, do us all a favor and just shut up.

Yep, I'm A Normal Mom

2013-04-15T09:12:00.000-04:00

The kids were out of school on Friday for teacher work day. It was also rainy that day as well though warm. Our yard is mostly dirt ok it's all dirt. So add rain it makes for a muddy mess. Once the rain let up the kids wanted to go out so they put on old clothes and snow boots and ran outside. Next thing I know Lucy and Porkchop are in the big mud puddle swimming. So what do I do? I do what any mom does I grabbed the cell phone and took video of it. Then posted it to facebook. I also posted a few pictures so friends could see just how dirty they were. A friend commented you are a normal mom. She didn't mean anything by that comment. She's part of the autism club. I think we all forget autism or not we are just moms.

Yes I am a normal mom. I clean up after everyone. I cook. I wrangle mount laundry. I fight with the teenager. Look for lost shoes. I'm tech support when the kids can't figure something out. We do homework, go to school events. Drive kids around to activities and friends houses. You name it I do it.

Sure there are somethings I do that other moms don't. Calm meltdowns, track medication, document seizures and headaches. Really though for the most part I'm just a normal mom. We just have autism added to the mix. Yes I also feel like Lois from Family Guy sometimes. Really this clip is my ringtone for when my oldest calls. Check out the Mom song.

Gifts No Guile Style

2013-04-12T08:00:00.000-04:00

A while back I posted my shopping post. Basically how we buy things and how some things need to be just right. Well the same thing can be said with gifts. Now I have some family members and friends who will just one day decide I want to get the kids something. For a while I would get phone calls what do the kids need want? you? etc. They are just trying to be helpful and they want to make the kids happy. I do the same thing. I send nieces and nephews stuff just to do it, or I see something i know a friend will like I pick it up for them. Now what if you don't know what? What if they will only wear certain things? Of course interest change, sizes change. So rather than buying stuff no one wants or needs my friends and I devised a plan. So far it works and best of all we can send surprises See if I call and ask you what size you are you know somethings coming but if I don't have to ask you won't know until the package arrives.

What is this great plan that works for us. Gift lists. I have two. One on amazon for toys, books, and other household items. I also have a Kohls list for clothes. I keep them updated so if we get something I can delete it or as sizes change update. Now my amazon list is a bit of a free for all. anyone that knows me knows I kind of use it as my personal list as well. Right now we are working on redecorating the kids rooms slowly so I will add items that fit in what we are doing. Everyone knows the carpet cleaner I have on there while I really need it I do not expect anyone to buy it for me. Its there so I remember which one it is when I go to buy it. Now if they really wanted to buy me new dishes I wouldn't complain. ;)

You can make a gift list at almost anyplace. Some have it restricted to just babies and wedding but amazon it can be anything as well as Kohl's Thats why I use them. Oh and Kohl's is super easy returns if its not what we expected.

Now my madness also teaches the kids to wait for things. When they say I want this, ok lets add it to the amazon list. Not only are they not getting it right away, they know there is no guarantee that they will ever get it. When they move on and decide nah I don't want that anymore in a week we just delete it. So see we are helping family and friends as well as teaching the kids things. win win.

A common complaint I hear from autism parents is their children getting gifts that are just not right. This can help stop some of that. I know I know you should never complain about about a gift, thats not what I'm saying. There's no harm in leading people to what are the right gifts.

*I have not been paid for this nor was I even asked to do this post. I just found a easy way to help out with gift giving within my group (we all do it) and thought I would share*

Response to Comment

2013-04-11T09:22:00.000-04:00

I got up this morning did our usual thing and checked my email. There was a you have a comment on your blog email. Yay I don't get many comments. this one to be exact. Now I am not going to use names because calling someone out by name publicly is wrong. I am not writing this to call anyone out. I did want to address the comment though and it will take more than a few lines. Hopefully the person the left the comment will see it.

"When was the last time you returned a phone call promptly or reciprocated a dinner invitation in a timely fashion? Or offered to run an errand for a friend or sibling? How often did you cancel plans at the very last minute? Are you totally co bounced that your life with your kid with autism is a billion times harder than everybody else's, regardless of whether it is truly the case? Do you make multiple, specific demands upon anybody who invites your PreciousDarling AngelFace and then freak out when your edicts aren't met? Because the world ends if my kid practices the piano while your kid is at my house and can hear it?

Does your child hit other kids / pull their hair / destroy their belongings / hurt animals if given the opportunity? My kid is pretty tolerant, but after the third consecutive playdate from which she came home with a WHOPPING big bruise, she doesn't wanna play with her cousin (who legitimately has autism, a special need) because he repeatedly hurt her - and I don't blame her one bit.

Maybe you're being discriminated against and you are regularly excluded simply because he's autistic -- but it's equally possible that you've not held up your end of the social contract for years and years in end OR that your kid (despite being autistic) is so unpleasant to be around that they're avoiding you. "

When I first read it I was upset as would be expected but I reread it and thought about it. The author sounds frustrated but I don't know them so I have no idea what their experience is.At the same time they seem to be reaching out. I could be all angry myself and fire back with all kinds of assumptions but that will not help anything. It is clear that they do not follow me or they would know the answers to their own questions. Maybe it was the first post they have read. I can't assume everyone has read me from the start. (but you all have right? ) SO let me get started. I just want to explain my point of view and address the questions raised. I can only speak for myself.

Not once have I ever said my life is a billion times harder because of autism. I don't think I have ever said my life is harder than anyone elses. On this blog or anywhere else. I've never known anything else so really I don't know if it is or not. I do not make specific demands on people we visit. Now I know some people do, sometimes it is needed such as I have rules I need to follow when my niece visits. Hers are food related and she has a lot of allergies so they are necessary demands. I do I follow them, but its a allergy. We no longer live in the same state anymore but when she was just down the street I always made sure I had food for her in my house at all times. I also know some people even without autism being a factor make outrageous demands when they visit. My kids know someone elses house it's their rules we cannot tell them no you can't do that and I will not tell someone how to run their home. Instead I have taught my kids ways to handle things that may bother them.You don't want to hear the piano you can go play outside or put your headphones on.

I have been known to call friends and family when I am going out to ask if they need anything while I'm out. I Have taken other kids off the bus because dad hurt his knee or mom was going to be a few minutes later than usual. My neighbors have also done the same for me. I would say I am as good as anyone else with returning phone calls in a timely manner. I try to get back to people as soon as I can. No one can answer every call every time and return every missed call promptly. Sometimes life just doesn't allow for it. I respond to invitations quickly and typically we accept unless we already have plans at the time. It is not routine for us to cancel plans at the last minute. It does happen but find me one person who has never had to cancel something last minute. You find that person and I will be impressed. I do my best but I'll admit it I have dropped the ball on occasion.

My kids are not aggressive I know some can be but mine are not. So lumping all autistics into that they hit, destroy things and hurt animals is just plain wrong. Dare I say lumping any group of people together for any reason and using a blanket statement on them is wrong. I'm sorry your daughter had a bad experience but that is not typical for many of us. Hitting in my home as is in many peoples homes I know is unacceptable. You don't hit no matter what. I do not know your nephew so I don't know the reasons why. Are they being triggered. Trust me I know people that think it is fun to trigger a meltdown (I absolutely am not blaming the daughter here, could be a third person, could also not be the case). I also know that sometimes you don't know why it happens. It could also be a form of communication. I can also understand your daughters point of view as well. We have a couple kids in the neighborhood who are little bullies and porkchop my youngest doesn't want to play with them. I get that. Why would he? Why would your daughter want to? Why would anyone want to go someplace where they get hurt? I would also ask what is going on during playdates? Rather than just avoid address the issue. Even with the neighborhood bullies I went and talked to their parents. One corrected the issue the other could care less. Maybe find a activity that both kids and adults could do together like the zoo or a park.

In my case and why I wrote that post was we it's not only myself other third parties have seen a change in behavior from some people. Nothing else has changed except a dx. We still do the same things. I know that there are some people out there that use autism or other special needs as a blanket statement to excuse behaviors. I am not one that does. I do not allow my kids to use it as a excuse. They are still expected to be kind to others and respectful. I have helped them learn how to handle situations that work for them. Maybe they take a walk, maybe they use headphones, there are a million maybe they do scenarios. Not one of the scenarios is to be violent or rude.

I don't know what your relationship is with your sister or brother is. I was talking about my experiences. I don't know what happened in our case. I have had nasty comments made in front of me that lead me to believe the reasons are autism.I have heard shes a blogger type with the sarcastic tone and laughed at, then they go on to praise the blogs they follow and love. Hmm and I'm what chopped liver over here. You don't have to love what I wrote you don't even have to like it. You also don't need to be rude about it. Maybe it is me I don't know. Something changed that much I know. I know I used to get 50 texts a day and now I get maybe one in six months. I was also trying to point out how facebook throws it all in your face. Are my kids perfect? No they are not.

I also know there are people who reach out to their family members but hit the brick wall. The post was never meant to offend them. They get voicemail and never get called back. They plan a dinner and get canceled on last minute every time. They try and buy gifts but get told thats not going to work after they asked what they should buy. After so long they just stop trying and then they get to hear the complaints that you never call, you never come over, you never? Well they did but you were too busy for them yet now you expect them to jump when you call.

To the writer of the comment I hope you find the answers you need. I hope you can mend the damage done between your daughter and nephew. You keep going over for playdates so the one assumption I will allow myself to make is that you want a relationship between them.

Video 2013

2013-04-08T11:24:00.000-04:00

Ok You submitted pictures and quotes, you waited and here it is. The video is now live.

Thanks to:
Homestyle Mama
Inner Aspie
Anacora
Autism Raising Autism
Laughter Could Be The Missing Piece
Mama's Turn Now
And everyone else who submitted and made this possible.

What Would I Say?

2013-04-05T12:59:00.000-04:00

One of the most common questions you hear once you have been around a bit is what would you say to a parent new to the autism club?

You know a lot of people start with hey you're part of the club no one wants to join. I don't like that line. I feel like you are already starting in a bad place. I think anyone new to an autism diagnosis parent or the autistic themselves need more positive message. We need to hear theres nothing wrong with you.

Lets change that from the club no one wants to get ready for an exciting and amazing journey. You are going to learn more about yourself than you ever thought. You are going to learn that you can take on school districts and win. You can ask for what you or your child need to be successful and most of the time people will just say ok. You're going to find out who your real friends are. Some family members and friends are going to walk away because they don't understand and they are choosing not to. Them walking away has nothing to do with you and everything to do with them. Yes it hurts but in the long run it's for the best. Your real friends will be right by your side no matter what.

You will be bombarded with doom and gloom at first, really I'm not lying. I highly suggest not opening any article well meaning family or friends send you. They will just make your head spin. While you are looking for the facts (everyone does it) take time and visit autistics blogs as well. Read what they have to say. Get many different points of view.

The reality is over time your view will probably change. Once you are past the initial stage where everyone tells you all the bad stuff you get to see all the good. Even reading this blog from the start till now my views have shifted a bit. Nothing too drastic but they have shifted. This is true with a lot of blogs. You can see the shift.

You will find your way. You will find what is right for you. If you choose not to follow some therapies thats fine. You are not a bad parent, you are not a bad person, you are being true to yourself and family. It is more than ok to say I just don't think that is right for me or my child. There is no one size fits all. Everything will be fine and welcome to the cool kids lunch table.

Number one thing to remember you are still you, your child is still your child. Still the same person you were before diagnosis. The diagnosis does not change who you are.

Autism in Our House

2013-04-03T00:00:00.000-04:00

I submitted this to Parenting for their autism essay contest but didn't make the cut. So I decided it was their loss and I would post it here for y'all to read.

Autism in our house is just that autism. Two of our four children have moderate autism one has ADHD and the baby of the family is a mild hemophiliac. SO Autism is just something else thrown in the equation. It’s not a bad thing, in fact it make the kids who they are. If you wanted to take away their autism my husband and I would say No thank you we are fine. The one thing about autism we would love to change is the social stigma attached to it.

When a child is diagnosed the doctors throw them to the wolves so to speak in a confusing world of therapies and views that would make anyone’s head spin. Once we took a step back and looked at the big picture, we threw all therapies out the window. They were not for us. What people wanted to change we saw no reason to change. SO my fourteen year old son paces alongside my cart at the store, he’s not bothering anyone it makes him feel better, leave it alone. All the therapies were doing were trying to change what bothered other people. They were not allowing him to be him.

We as a society are told by large organizations that autism is bad. Autism is evil. Autism steals children. Autism must be eradicated. Well in our house Autism is beautiful. Autism is part of you. Autism helps you think outside of the box. Autism did not steal my children. Autism is celebrated in our house.

In short autism in our house is just another day like any other. Autism does not define our family, we define autism. My children will have relationships, go to college, get married, and have children, if that’s what they want.

My Big April 2 Post

2013-04-02T11:55:00.000-04:00

I know, I know, I said I wasn't going to do this. Promise it's not what you think and I will be brief. You don't need a long rambling lecture post from me. There will be enough of that today. What I will invite you to do is read some of the other posts. I have a good two or three years of posts. Read and share if you like. I invite you to visit blogs by autistics. I will post a list sometime today. I invite you to visit the Autism Self Advocacy Network and read their blog. I invite you to read other autism blogs. But while you are doing all this reading. Really listen to what the writer is saying.
Other than that I got nothing. No big announcement, no big post, really it's Tuesday and I really need to do the laundry.

Have a great day.

Marge just seemed appropriate for today's big plans. You are all jelaous I know you are.

April Showers Bring May Flowers & Autism

2013-04-01T10:30:00.000-04:00

http://www.qoroart.com/taxonomy/term/57

Well it's here April. The month were autism will be all over Facebook for a while. Lots of stats. Lots of reports. Probably some of the craziest studies around. There are two different camps. Autism awareness and autism acceptance. I don't think we need autism awareness Even if people don't quite understand autism. They know it exists Maybe they need education? I'd like to think we will get to the point of widespread autism acceptance.

Will I do any big post for April. No, unless you count this one. I write this blog year round. I'm not going to shove it down peoples thoughts Autism is part of us and our lives everyday. I'm assuming if your reading this it is part of yours too.

SO I will not be changing my Facebook profile pic to autism awareness because my friends already know, they are already aware. I will not do any big special post. (I will do my video I started. You can see the details here. ) I will not light it up blue. I will keep doing what I do everyday of the year. I will talk I will write and will do everything in my power to work towards acceptance. I will participate in events through the autism organizations that I support year round not just in April. I will invite autistic's to take the floor and speak. Most of all I will listen to all points of view. By listening maybe we can find the divide, maybe if we listen to each other really listen we can fix the fractures in the community.

Why All The Judging?

2013-03-30T08:00:00.000-04:00

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

Autism Speaks, I Want To Say

2013-03-29T11:23:00.001-04:00

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.

Light It Up Blue: Not This House

2013-03-28T11:11:00.000-04:00

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.

Making a Video and You are Invited

2013-03-22T15:56:00.002-04:00

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

2013-03-22T08:00:00.000-04:00

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.

Ignored

2013-03-21T10:54:00.000-04:00

(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.

Winner!

2013-03-19T09:11:00.002-04:00

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.

Name My Esty Store

2013-03-08T13:49:00.001-05:00

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

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

2013-03-02T21:40:00.002-05:00

*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.

I Almost Quit

2013-02-14T10:06:00.000-05:00

When I started this blog really I didn't think anyone would read it. Surprisingly you did and you responded. It's no secret that the autism community is very divided and because of that I almost quit. I almost closed this all down because I was tired of the personal attacks and just can't deal with it anymore. But I didn't, I'm still here.

One thing about me I don't quit, I don't let the bullies win. Sorry parent, autistic, non-autistic, black, white, yellow, female or male, really I don't care who you are when you start attacking others you are a bully. When you start saying I know nothing because I am not you, I'm just a parent, your child's different etc... Well I'm sorry yes I do. I may not know your story, your experience but I do not speak for you I have never claimed to speak for anyone but myself.

I didn't give up when in a bad marriage I stood up dusted myself off and did what I had to do to survive. Believe me sitting in that courtroom was one of the scariest things I have ever done in my life.

When I had my first child before I graduated high school, I didn't give up I just kept going. People said I would be nothing well they were wrong, not only did I graduate high school but college as well.

I didn't give up when my daughter was not talking when she should have been. I went to the school district for help and they gave it to us. Now you would never believe she didn't talk until age five.

I didn't give up when I got hurt to the point I couldn't work. I fought through years of therapy to try and get back to where I was. I will never go back to nursing, physically I can't. I'm not going to give up. That door is closed so I got my marketing degree.

I didn't give up when we realized Roger was having trouble in school. Just because the school couldn't figure it out didn't mean nothing was wrong, so I figured it out. I made the rounds with him to different doctors until we found out what the trouble was.

I didn't give up when the neuropsych said your child is autistic. Nope I asked what dose he need to be successful. Took the info went back to the school and got the IEP in place.

I didn't give up when a group of people wanted to make choices for my child without talking to him. I demanded he be present in the meeting and his needs be discussed with him as a full participant. He can tell us what works and dose not work for him.

I keep going, but I'm sure you get the point here I don't give up. Please do not take this wrong I love my readers and followers but I do not do this for you. I do this for me. If someone gets something out of it great but that's not my goal.

I can only tell my families story, our experiences, how I think. I'm sorry I can't change my way of thinking to appease others. I would never ask someone to change how they think to be accepted by me. I feel it is really unfair to ask the same of me. Dose everyone agree with me, No of course not. It would be pretty boring if we all thought the same exact way. We all see things and experience things differently. It is unfair to tell someone their experience is invalid or wrong because it's not the same as yours. The best way for you to drown your own voice out of the conversation is to start attacking others.

Disagree that's great. New knowledge comes from respectful disagreements and discussions Leave the personal attacks out. I guess what I'm really trying to say is there is plenty of room for everyone's voice at the table of humanity.

For now I'm staying, I will keep writing, I will keep telling our story because that's what I know to do. I don't know how to quit.

Raising Cubby: Book Review

2013-02-08T11:37:00.002-05:00

I received a advanced copy of Raising Cubby by: John Elder Robison through netgalley. From the first page this book is great. John knows how to suck you in from the start and who wouldn't be sucked in when the story starts in a federal courtroom and Cubby is facing major felony charges all because of what you soon find out is a over zealous prosecutor.

This is not just a story of raising Cubby but the story of a man becoming a father. How he handles having a child and what happens when divorce enters their lives. He makes up fairy tale stories for his son at bedtime, they battle invading rats in one home while waiting for the new one to be built. There are many adventures for father and son. From the first page until the last you will be entertained.

There are plenty of twists and turns in the story. From the Wondrous Dada who told his toddler imaginative stories to the ATF showing up at Cubby's college. It will also make you think twice about ordering things online. Their trouble began when Cubby ordered perfectly legal chemistry equipment and the man who sold them to him searched him out, really to me sounded like the man stalked him and wanted some major recognition. John explains how the local police overreacted to a kids chemistry lab. One of my Favorite stories was how Cubby and John would go to a cul de sac and Cubby would run while John followed. Then one day a crazed Mother felt the need to scold John over it. Now if you want to know more details of the stories or what happened in court your just going to have to buy the book.

I went to one of John's speaking engagements a couple years back. Of course he was awesome as always but he also teased us with this book. What he teased became a reality. He had said he was working on a book about his son, but that it would not be the normal doom and gloom parenting a child with autism book. I have to say he delivered on this promise.

You can visit John on facebook HERE. You can also preorder his book which is due out in March from Amazon.

*The opinions expressed here are mine and mine alone. I was not compensated in anyway for this review.*

Therapies: Why Quitting Was For The Best

2013-02-07T12:16:00.000-05:00

*This is our experience. Every persons experience will vary, this is just one families views.*

http://www.google.com/imgres?

What is the first thing any parent gets when their child is diagnosed with autism? The list of recommended therapies Now if you really look at the list between ABA, OT, ST, PT, CBT, etc.. therapie can become a full time job.

Our case was no different. When Roger was diagnosed I was handed a list of suggested therapies. Our list included OT, ST, ABA, CBT, social skills and a psychologist. Here the thing about all of these the wait lists are huge. Some of the lists were almost two years out. Just calling becomes a job. Most of the places will either say no room or they just wont call you back. If you do get in their mindset is not the same as yours.

I called a couple different companies for ABA, one three months later got back to me and sent someone out to do the intake. First off they normally only dealt with small children not a 12 year old. Second everything was scheduled during school hours, this was more for their convenience than mine. This meant he missed a day of school to do the intake. The lady came out and spent about two hours with us. Asked a bunch of questions, observed, all that stuff. In the end her plan was to stop behaviors she saw as annoying where my idea was more practical issues that I was told they could help with. I don't care that he taps his foot or paces no big deal. He needed help organizing. Everything from his room, schoolwork, even showering. This was not her plan. Before any of that could happen he would need min 20 hrs a week ABA I didn't feel that was appropriate. How was he going to participate in after school activities? How was he going to just chill out and not have to work all the time? Basically it was I obviously didn't care because I thought the amount of time was insane. He would go to school then come home and work with ABA until dinner time then go to bed. What kind of life would that be? After the intake we never saw them again. They did call a couple of times but unless they were willing to help where we needed help not what they thought was important and take the min time down we were not interested. ABA was out the door before it even began.

Social skills groups, wow don't even get me started what a joke. I called and spoke to a few. Almost all of them were full plus the cost for a month which was just a few hours on Saturdays was upwards of $800 plus dollars. When I asked what they did the response was always facilitate social skills. What dose that mean? "Well we give them scripts in a group setting, play games, etc." So the conversation is forced? "No facilitated by a adult who is trained". That still sounded forced to me. The more they talked the more turned off I got. A friend had also told me of a club in town that had lots of activities for kids in a no pressure environment they could pick and choose what they wanted to do and it was only $50 a year. I should mention this was not a social skills group, they never claimed too be any sort of therapy just a club. You see though anytime you get people together over a similar interest in a activity they do interact with each other. If we hadn't moved to a different county we would still be part of them because it was fun. It may just be me but the best social skills training has not come from a professional but rather just being a kid. The best way to learn is to get out in the world and experience it. As you experience you learn what is expected and how to act. This goes for all of us.

Speech we did for a year for Roger and three years for Lucy. Lucy did not talk until she was five and yes I do think the speech therapy she received through the school greatly helped her. Roger he has a different speech pattern. No one is quite sure how to explain it but he can be understood. They worked with him for a while and really nothing changed. When we sat down with the speech lady we all Roger The SLP, and I decided that it was time to end speech. He still does receive some speech twice a month at school but all after school private has ended. It was not changing anything just using up time.

We also did OT. He has some handwriting difficulties that she was willing to work with. While we had OT for a year the handwriting was thrown to the side about a month in. We all realized nothing was going to change and it was just stressing him out. He can use a computer so not worth the stress to force it. They moved on and did some strengthening balance and fine motor things instead. After a year we stopped. Really all we were doing was spending time in offices taking away from activities that he was interested in.

We never did find a psychologist that could do CBT with him for anxiety. Once yous say autism they all back away. Since we moved we do not have the sever anxiety anymore. I know for many that is not an option but for us it was. We needed to move and it just happened to have a good benefit.

It's been almost a year since we quit all therapy. If I had to do it over again yes I would make the same decision Knowing what I know now we probably wouldn't have gone through all the stress of finding therapist intake, and spending so much time in office's that proved to do nothing.

In the time since we have moved and ended therapy the meltdowns have lessen. He is no longer stressed by therapy. He has a few friends in the neighborhood from school, and he participates in activities. I truly believe that just being kid and participating in activities he likes such as baseball and Lego club have done more for him than any therapy I could have paid for. I also believe by never taking the therapy that wanted to change him reinforced to him that there is nothing wrong with who he is. Yes we have worked to change some behaviors but really that is part of growing up. All kids have behaviors that need to be changed but there is a difference between changing a behavior and trying to change a person and I for one can not stand behind any therapy that's whole goal is to change a person.

Big Deal, Little Deal: Not Everything Can Be Huge!

2013-02-06T13:11:00.001-05:00

*Warning: I can guarantee this post is going to piss some people off. There will probably be cursing and most will go against the typical parental stance. Please bare with me, I know its long and rambling So here goes nothing*

One of the early scripts we were taught by our neuropsychologist was big deal, little deal. This was used to help with emotion control. If someone touched you pencil rather than start yelling stop and think is this a big deal or little deal. Well it's a little deal so I'm going to move on. Someone hits you well that's a big deal so I should tell someone. You get the point right?

Many parents need to learn and use this script. Not everything your child dose is huge. Oh they did their homework without a fight. Hey great job yes, huge not so much. We all know the type everything their kid dose is huge. Johnny crossed the street huge, Johnny used a tissue huge, Johnny wrote his name huge. Johnny flushed the toilet huge. (hey can Johnny come teach my kids what the magic lever on the toilet is for, because they don't know) After you hear huge, huge, huge it loses its meaning. What happens after that when Johnny dose something huge like give a speech to the whole school it's overlooked because we have all heard how huge it was that he swept the floor.

I've talked with my kids about it. Roger once had a teacher that said everything he did was huge. It really bothered him because his line of thinking was I'm not doing anything different than my peers so why is what I'm doing huge? In a way you are telling Johnny I don't expect you to turn your homework in on time so its huge that you did. Wait hold on that is something that is expected of all students in his grade.

Roger is in the school band. Now while we do have a exit strategy in place in case he gets overwhelmed and it is to much he is expected to stay and participate in the concert. Sure it would be easy to have it written up that while he will be in band class because of anxiety we are just going to exempt him from performances. That is not doing him any favors. Making accommodation to make sure he gets the full benefits absolutely helps. When he stays and preforms just like the rest of the band. Is that huge no its expected for him to do that. Now if he stands up and does a solo during the concert huge.

One of the things I hear most from parents is how they want their child to be accepted in society for who they are. This is great but when everything is huge you start to give off the impression that your child can't fend for themselves so everything they do is amazing and huge. When this impression is given people tend to use kid gloves no matter the persons age.

By no means am I saying don't celebrate accomplishments, we all do it. Just remember sometimes a how does that make you feel does more for self empowerment than that's huge. Asking how the event makes you feel allows for self expression and really be able to think about what you did. That's huge is more of a brush off. Roger hears that's huge and thinks the person didn't think he could do it and adds to self doubt. Where as asking him after a concert so how did that solo feel, gives him a outlet for his self pride.

I get it I do. How many of us have been told your child will never, and then they do. Or they work really hard at what is seen as a simple skill and they get it down. Yes that is huge and amazing. Drinking all their milk no really that's not. I'm saying tack a step back just like we ask our kids to do and think big deal, little deal. We spend so much time teaching all kids that not everything can be a big deal that I think we forget it ourselves.

IEP Songs

2013-01-29T19:37:00.000-05:00

The Title says it all IEP Songs. Enjoy

Why I dislike Teen Mom.

2013-01-24T10:52:00.000-05:00

*Yes I know not autism related, get over it!*

I open my facebook this morning and there it is yet another article about Teen Mom. No not teen moms the MTV show Teen Mom. I guess one of the girls from the show is acting like well she's acting like a young girl. They don't know how to respond to conflict, in this day and age you hit twitter and facebook and air all your problems out.

Personally I can not stand the show. It glorifies teen pregnancy. Please save me with the no it doesn't Really watch it, the girls get pregnant very young most are still in school and it just flows. I have yet to see a story line that shows a high risk pregnancy. After they have the baby everything is all great. Sure things may have gone to hell with daddy but mom still hangs out with friends, has a house, basically dose what she wants and you know what you fail to see? The reality of being a teen mom. The girls on the show have massive paychecks to be on the show. Most girls will not have that paycheck to help them out, they are going to have to get a job. Very seldom do you see a teen mom on the show go to work.

I was a teen mom and I can tell you I didn't own a house, have a brand new car, heck most of my friends disappeared I worked two to three jobs at a time I didn't have time for a social life much less a date. Sure I had what a lot of girls don't support from parents. I also had a high risk pregnancy, I almost died because of it. I somehow managed to get my degree but it took me ten years to do it.

MTV try showing the reality, not the big paycheck I have no worries show. I know no one wants to see that. Show the high risk, show how much it costs, show that college will take you much longer, show how much work it is. Stop with the everything's great and look I'm a celebrity because I had a child at 16. Maybe it's not MTV's fault maybe it is societies for making these girls celebrities. For most girls they don't have the easy ride that the teen mom girls do. There is no show for them, no house, no fans, no friends (they all leave), just real life and it's hard. If they think their lives will be like the show they are in for a rude awakening.

Shopping: No Guile Style

2013-01-19T12:56:00.005-05:00

Without reading can you tell the difference?

One thing everyone in this house can agree on is no one likes shopping which leaves it to me. We have a bunch of rules we follow mostly unconscionably about what is bought. I noticed this the other day when I was buying shampoo and conditioner for the kids. I went to pick up the coconut because well the smell is pretty weak, but had to put it back. The reason the shampoo and conditioner are almost the same exact color. Shampoo must be brighter than conditioner in this house so they know which to use first. We tried the write numbers on the bottles but they always wash off. Yes even with a sharpie. So we found bright shampoo works. I have been doing this for who knows how long and never really thought about what I was doing until the other day. It all started because of the executive functioning issues Roger would get in the shower but get all confused on what to do next, so we had to find a solution rather than me standing outside the door giving directions. Sure they could read the bottle but that would be a added step and the less steps the better. They use bar soap for body wash nothing in a bottle.

Now look. Shampoo is brighter than conditioner no reading required.

Body Wash, This is a NO NO, looks too much like a shampoo bottle and even the colors are close.

Bar soap perfect, no matter the shape or color you know what it is for.

Easy to handle laundry soap.

This got me to thinking what other rules do we follow. Laundry soap always liquid. I hate powdered it smells and it gets everywhere. We have recently gone to the single use pod things to help the kids be able to do laundry without using half a bottle. Fabric softener only Snuggle, the others smell to strong. The boys will only use axe deodorant. The swear by it. They will not use the body wash or spray because it smells to strong. I'm not going to fight that logic. Mom's stuff only Tampax or Always, why because they are the only ones on the market with zero latex.

Now most teenagers want to shop at Abercrombie and Finch, Aeropostale Gap, you know all the high end stores not mine. He says its to noisy and smells bad in the stores. He also hates the clothes. Says they fit strange and he doesn't like how they feel. Another thing I will not fight Target it is then. Second hand jeans are the best someone else has already worn them in for you.

There are many others certain things are only bought at certain stores because one store brand is better than another. Some brands are bought over another because of smell, look, taste, or feel. Seriously there is a such thing as a too cheesy cheese stick. Even the dog has rules. He will only eat one brand of dog food and only likes one type of treat.

http://www.migy.com/2010/04/ground-rules.html

I know we are not the only ones what are some of the rules you follow on products you buy? If you think you don't think about I bet you will be as surprised as I was when you really think about your shopping habits.