Details in The Autism

This morning when I was walking Racer to school I felt his lil fingers seeking the details in my hand. Over and over circling the lines and textures and I thought about how most of the time kids just hold your hand. How until Racer was born I never noticed all the details of every little thing I do now. Its not just about stopping to smell the roses anymore, now we are looking at what makes the rose, the color of the petals and the thorns on the stem. Why is it there and of course it all has to make sense, I need to know where and why all these things exist.

Its not the "why" stage either, that I'm used to. For him this is wondering about his world and how it all fits. First it was the old gum on the floor, the birds on the wires, then its the cracks on the street the flowers that were there before and now they've been cut back. Where do the leaves go even though the weather hasn't changed.

But its those details he sees that no one else notices or overlooks. Those are the details in the autism, his lil finger searching for how my hand feels different from his. That's when I can smile, because as hard as autism can be sometimes all it takes is those lil details that only he sees.

I've Slacked

So the blogging gold just hasn't been coursing though my fingers lately. Lots of stuff going on just not in the mood to put it down here. So here is my attempt to try and catch up and let you all catch up in the land of YuckMouths.

First the daddy has a book coming out....Let me just start by saying FINALLY. We can all finally breathe once it comes back from the editor and hits the amazon website. Also in the works is Racers book, that I'm really looking forward too.

Then we have Wolverine and all his issues....I swear this is going to merit its own blog post once all is said and done. I don't know where I have found all the strength to not strangle his teacher or smack her upside her head. If you have twitter then you know what I'm talking about, but I haven't found a non cuss word attempt to write this blog yet. Let it be known that there is a special place in H E double hockey sticks for this woman.

Racer had his testing with Regional Center. It seemed to go well the two ladies were so pleased with all the progress he's made since he was last there. But I could see their concern with his movements and behavior, they also want to talk to his kinder teacher to see what goes on in class. Crossing my fingers that time goes fast and result day comes sooner than later.

There is my quick wrap up....feels good to be blogging again.

Head on Over.....

If your looking for my blog today then head over to Jen's blog at Living Life With a Side of Autism. She is hosting the YuckMouth house of insanity today as we talk about teens.....so hope on over, read and enjoy. Then read her blogs cause they are pretty freaking awesome!!

Life is like.... By Jennifer Butler Modaff

Life’s like juggling—we are all jugglers, just some of us juggle more than others. I have no idea how many balls are in the air anymore. I know there’s marriage, being a mother, work, home life, autism, immune deficiencies, 6 cats, 2 dogs, and probably way more than I am listing. The trick I’ve learned over the years is to just not look up, because anyone who juggles will tell you as soon as you look up all the balls come crashing down.  My mission in life is to help others learn to not look up and just keep juggling, but I guess for that to make sense I had better back up a bit.

In July 2009, my husband and I began fundraising to receive an autism service dog for our son Caden.  Caden was diagnosed with autism in November 2008 (when he was just a little over 2 years old). The day of the diagnosis wasn’t a surprise; we had diagnosed it long before our pediatrician would give us the referral for testing. He was a family friend and honestly I think he really just gave us the referral so that I would stop bugging him and so he and my husband could get back to band practice in peace.  I think everyone else was surprised by Caden’s diagnosis because he didn’t really fit the mental picture that people have of autism. Even his therapists and teachers initially resist the diagnosis but if you spend enough time with Caden you’ll see it---some days more than others but it is most definitely there. Caden moves all over the spectrum depending on what is happening in life, but this is most obvious when he is ill.

Unfortunately he is ill a lot. Both Caden and his 10 year old sister Ryley have primary immune deficiencies.  The ones they have are fairly rare and require a genetic mutation from both mother and father—here’s the interesting part---they have different biological fathers. Yep, when you do the math on those odds, it makes you wonder why I don’t play the lottery. Of course that’s a question I ask myself every Monday morning when the alarm goes off for work.  I suppose it is important to take a moment here to explain immune deficiencies; long story short, they can’t fight infections, their bodies don’t build immunities against diseases naturally or through vaccines, they take more medications a day at 4 and 10 than most senior citizens I know, Caden’s had 4 surgeries and the next is on the docket, Ryley’s had 13 surgeries and she is preparing for number 14, monthly infusions and we spend more time with our specialists than we do most of our family members. Ryley asked me about a month ago, if everyone knew their ENT’s cat’s name and helped their nurses decide where their children should go to college……umm, again why don’t I play the lottery?

So I suppose by now you are imaging that we don’t leave home much—I mean who in their right minds would take kids who can’t fight infection out into public?  Well that would be us. We decided a long time ago that no matter what label we are dealing with, we are going to do everything we can to make sure that our kids get to be normal every day kids. So Ryley is a competitive cheerleader who has a practice and competition schedule that makes healthy kids cringe but she’s good and in the gym she’s not the “sick” kid, she’s the flyer with attitude. Caden will be getting his service dog in August so that he can be out and about just as safely and do whatever activities he decides to pursue.  People who don’t know us usually just see two happy and seemingly healthy kids.  That’s awesome, right?  Well it is until they find out all that the kids deal with and freak out because it doesn’t fit with the picture they have of life threatening illnesses or autism. 

So that’s where our autism awareness campaign came from. Practically we already had a Facebook group and website set up from our fundraising efforts. Philosophically we wanted to try to increase awareness one picture at a time because no one on the spectrum looks like the classical image—you’ve heard this before but if you’ve met one person with autism, you’ve met exactly that—one person with autism. Our goal is to spread awareness by featuring a child, young adult, or adult each week on our Facebook group and website. We post a picture and then whatever the individual or parent wants to share as well as links to any personal pages, blogs, etc. We don’t sell anything or promote anything other than awareness.  If you would like to be featured or know someone who would or just have questions, please contact me. You can find me through the Facebook group or website.

FB: http://www.facebook.com/group.php?gid=137996881557

Website http://adogforcaden.yolasite.com/

We are also trying to spread awareness of our campaign, so if you are interested please feel free to join our group and share this with others.  We can spread awareness one picture at a time, but only with your help.  Remember I said that the trick to juggling is to not look up-- well the thing is that we all look up or down sometimes and balls go flying everywhere. We all just need people around us to help pick the balls up and then we start juggling again.  

Out Of Control

Sleep....I've blogged about it before. Hell we've all blogged about it at some point. I'm not getting enough, the babies aren't getting enough, Racer, teen1 and now the daddy are all on this fucked up sleep/no sleep schedule. Its become insane, and dangerous. I really feel like I'm living on the edge of a cliff about to fall off. I'm tired, I'm forgetful....all the things I usually am now times by like a million.

I just don't know what to do anymore. When we went to the doc, all the worthwhile advice she had to give was "most babies don't sleep through the night" GOOD LORD WOMAN SERIOUSLY???!!! I'm about to go out of my head, and I know the daddy is right behind me.

I just really needed to get that out there.

Mindless

I've just noticed that I must be winning the award for mindless freak this week. The other day I submitted one of my blogs to another blog page and totally blanked out on where I sent it!  Thankfully I got a email with a link to where I sent it and (yea I'm going there) remembered where I sent it. I've sat here everyday in front of my computer playing Farmville and all the other crap apps because I don't want to think. I don't want to think about what happens if I don't get the answers that I need to get Racer the help he needs. After the school is barely giving what is required and their crappy testing that gave him the Dx of "autistic like"....SERIOUSLY WTF IS THAT? How can they say that after UCLA said autism?! I don't understand that, its like his crappy SpEd teacher all over again who told me that it was a parenting problem and not autism. (not even going to go there).

Meanwhile there are like a million other things going on in my house that demand attention like 6 other kids that need food and care. A loved one who's trying to put his book out. My Grandma who got sick and was in the hospital overnight. Seriously I'm not ready for her to go yet, heaven can't have her! She's the most awesome kick ass woman I know next to my mom and of course myself lol. 82 and she's still running around with her GREAT- grandchildren! Who does that anymore? No one I know, and I'd like to keep it that way! I'm not a praying person but for that I will give an AMEN (just not ready)!!

Anyways....back to the mindless. Racer has MORE testing tomorrow, really nervous because what if they say "nah lady your crazy too!" I'm not sure if I'm getting results right after or if I really have to wait a WHOLE FREAKING month before I hear about my sanity yet. If it really is a whole month waiting you can expect more mindless posts from me. Maybe I should be lining up some guests lol.

Friendships of the Best Kind

So I have a really awesome blog to fill in here.....BUT I don't know where to start. I have a really awesome friend and after watching a episode of Gray's Anatomy on friendships I thought about my dear friend. But then I got my thoughts twisted so after a really good idea from my friend over at Autism Supermom I'm going to leave it open to all you readers before I tell my story.

Do you have the one friend you can't live without? The one friend who through all the ups and downs knows how to make you laugh in spite of all the madness? Share it with the YuckMouth house!

Open Letter To The World~~~ By Tracy Miranda

I'm completely honored to be able to post this for my friend Tracy!!

My Open Letter to the World

by Tracy Miranda on Saturday, April 2, 2011 

This project was started by Stuart Duncan. It's to show the world that we are a community, we will stand together and we will be heard. People all over the world are sending this open letter to media outlets, newspapers, Facebook, government and anyone else that might listen. This is how we will be heard on World Autism Awareness Day. The idea was to copy/paste this letter and then at the bottom at our own personal stories about What Autism means to me...here's my story.

 Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.

We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.

This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me...

Autism to me is more than just a word. It's more than something that other people are dealing with. Autism is my life now. It means to me that I need to educate myself so that I can educate others. It means my son will have challenges in life that I can't even begin to understand now.

Autism means to me that sometimes I am uncomfortable when I probably shouldn't be. Do I have to explain why my son is walking the perimeter of the play yard rather than playing with other children? Do I have to explain why he is more interested in a stop sign than the sandbox? Do I have to explain why on playdates he will stand in my friend's kitchen and open and shut cabinet doors for thirty minutes rather than interact or take an interest in what anyone else is doing?

The answer is no, I don't have to. Do I feel like I should, yes. Do I always, no. Just like people are judging him and possibly me, I am probably judging them in return. How will they react? Do I have the time/energy/focus to have this conversation right now? Maybe not. Do I want to change my attitude about this, yes. I have never been a judgemental person, and I don't want to start. However, I have my guard up now. I feel like I'm in mommy protection mode all the time. It's all a learning process, even for me.

My son means everything to me. He will make me be a better person and a better mother. He deserves nothing less. He has touched all who have had the pleasure of meeting him. His teachers love him because he is just a ray of sunshine all the time. He freely hands out hugs and kisses and loves to smile.

His road will be tougher, but I guarantee he will make a difference in this world. Mark my words. He will teach others compassion, sensitivity, laughter and love. He doesn't know how to be any different. I thank God for him every day.

Would I have chosen this road, no. Do I regret that we're on it? Not yet. I worry about his future; every day. But not so much that I can't enjoy now.

This is what Autism means to me. What does it mean to you?

"Tracy is the mom to a 3 year old with newly diagnosed Autism. She is happily married and enjoys meeting people, almost anything outdoors, and playing with her son. She is still learning about Autism and has found many resources and friends on Twitter and blogs. She loves to write and had her first ever blog post attempt featured on Autism Speaks only 4 days after she submitted it. She is hoping to start her own blog soon so she can continue to write and hopes to inspire others."

 

Physical Education

So its not like I did a lot of begging or bribing but I got Big Daddy to guest post for me! I promise not to let the YuckMouths destroy his sanity.....to much lol

When Griffin (my 13 year old autistic son) started middle school, one thing we were sure of was that we did not want him participating in PE.  It was not because he runs like Herman Munster nor was it because of the famous kick ball incident of ’08.  Frankly, it was because we didn’t think he was mature enough to handle the locker room.

You see, Griffin is a bit of a, um, naturalist?  At home, after exiting the bathtub each night, Griffin has no problem engaging any family member in lengthy discussions about elevator videos or Wilford Brimley, while still totally naked and dripping wet.  These conversations, when they occur in the kitchen, are great appetite suppressants but might not go over well with 50 hormonal teenage boys going through the most awkward stage of their lives.

So, to avoid any locker room mishaps or misunderstandings, we elected to have him sing in choir instead of put him through the brutal teenage rite of passage they (sadistic gym coaches) refer to as Physical Education.  Considering his speech impairment and total tone deafness, we thought having him in the choir would, at the very least, make spring recital interesting.

A few weeks back his teacher suggested that he may be ready for PE and that we can avoid the locker room dilemma by allowing him to change in the classroom bathroom.  We couldn’t refuse and Griffin was off to be tortured educated in the fine art of Dodge Ball. Turns out the gym coaches had some compassion on him and placed him with the girls.  Hmm.  I wondered, given his well known love the fairer sex, how this would sit with him.

Not surprisingly, he loves gym class although the teacher’s solution to the locker room problem was not without some hitches.  Specifically, I picked him up at school the other day and he came bouncing out with his shorts and one sock inside out and his tee shirt on backwards.  He couldn’t care less and neither did I.

Big Daddy brings his unique view of fatherhood, and the world at large, to life on his frequently updated and hilarious blog,bigdaddyautism.com. His tales (and cartoons) from the lighter side of raising a child with autism always spark laughter and plenty of comments. By telling funny and off-beat stories from his life, Big Daddy shows that raising a kid with special needs is not all doom and gloom. To the contrary, it can be quite humorous and inspirational.  His first book is set for release in April / May 2011.

What Autism is to me ~ Letter To The World

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance. 

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is. 

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder. 

You can not understand or accept the people until you understand and accept the Autism they have. 

Autism is a part of who they are. 

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored. 

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is. 

Today, we ask for your Autism Understanding and Acceptance. 

This is what Autism is to me...

Before you read our story I want one impart one thing, autism is everyday and its very lonely. I may be surrounded by family and friends who love my family but if they don’t understand autism, if they don’t ask about it and if they don’t lend support….then yes we are very much alone.

Everyday for the last 5yrs the YuckMouth house has lived, breathed, slept, not slept autism. While I struggle to still make the entire house aware of autism we live it, how much more do we need to be aware ourselves? What we need is for the rest of the world to be aware of it, to know it like we do. But not to just know our autism but everyone else's autism, because you see autism looks different on every man, woman and child, there may be similarities but its different for each and everyone of them

With today being the kick off of Autism Awareness Month, we the community are striving to let the world know just what autism means to us.

On August 24th, 2005 I gave birth to my beautiful baby boy. Nothing was odd or unsual, he wasn't born with autism stamped across his forehead. There wasn't a test that would tell us that as he got older he wouldn't be like all the other lil boys, that he wouldn't be like my other sons. As time went on, some milestones were missed or delayed, but nothing shouted autism to me. He was just different, and looking back on it now and if I had known what I was looking for I would have known sooner, things might have been different.

I'm not going to quote facts because facts are posted everywhere you look. But those facts aren't going to tell you what to look for.

With Racer his autism was there from the beginning, it was in the way he moved about the house. How he interacted with each of us. He has four older siblings and he just wasn't like them. He didn't talk and the words he had were odd and not normal for first words. But he was persistant, he was frustrated, he was alone. As a mother I did everything I could do help him along I didn't want him to be different, I wanted him to be fine. And even though I had my doubts the entire world said "he's fine, he's a boy and boys are slower to develop". I wish those words could be removed from the mouths of the entire world. Because a mothers gut is what is usually always right. At two he was lining up cars, making snake lines with cans all across my living room, I thought he was artistic I was perfectly happy to let my lil boy do what made him happy. At night he would climb out of his crib and fall to the floor and not cry, I thought he was brave. When we moved him to a smaller playpen that was closer to the floor he would rock it back and forth till it fell over I just thought he didn't want to sleep in that either. Never in my wildest dreams would I believe he had autism.

Then we went to the doc for his check-up, he was almost three and had a total of  three words to his vocabulary , dada, turtle, and pizza. He would sit and watch the same movie over and over again and cry when I tried to change it. At that doc appointment she suggested that he might have autism she gave us the number to Regional Center and sent us on our way. I was full of questions and I was very alone in all of this. Because again everyone around me said "oh he's fine, he's a boy and boys are slower to develop"

Weeks went by before we heard from Regional Center, that was a lot of sleepless nights. I wasn't sure how to prepare for it all, I wasn't sure what the outcome was going to be. We arrived at the testing, we sat through the testing and then we waited. They wanted to talk to us after, and we waited. Then we got the talk and I suppose this happens to a lot of parents. They went through all the results how he was seriously delayed across the board, but in some areas he was doing just fine. As I sat there I wanted to scream out JUST SAY IT ALREADY, I wanted to know if he had autism. And finally after dragging my heart through the mud they said the dreaded words "your son has autism". I was given a packet a sort of welcome to autism packet now that I think about it. I was told that someone would be in contact with us in regards to our son and we were sent on our way.

That was twice that we were sent on our way, twice that my mind was filled with questioned I didn't know how to form. And twice that we as parents weren't aware of autism, that the medical profession didn't help us be aware.

Racers autism isn’t always hand flapping and spinning, it’s squawking bird calls when he’s working on a puzzle. Its toe dancing when he’s so happy he can’t contain it all inside. Its lining up his cars across the full length of his twin size bed when he’s upset. His autism is being so deathly afraid of Halloween decorations at stores that he spends the entire month of October in the house.  And for now his autism also means not being able to say I love you to his family without prompts.

Racers autism for me is sleepless nights, because he’s not sleeping. Its wondering and worrying about his future and what will happen to him when me and his father are gone. The reality of knowing that no one knows Racers autism as well as me and his father do is scary, no one else bothers to get to know him enough to live in his world for a day.  As a child I can shield and protect him, but eventually he will be an adult in this world, in a world that has yet to reach out and understand who he is.

What is so important not only for the month of April but everyday after is to be aware. We have PSA’s  about cancer and aids and all sorts of other issues, but Autism which becomes worse every day, we have nothing. But parents across the world are dealing with this everyday, struggling in a world of their own because the outside world knows nothing about us and how to deal with us.

So not just for the month of April I want everyone who reads this to be aware. I want this to be sent to everyone who could ever possibly come in contact with autism and guess what the one fact that I will throw at you is 1-110 children have autism. What does that mean to you?

This is only part of our story because our story, his story will continue until he’s old and gray. I hope before that happens the world becomes aware of autism, more then just knowing the word or what they see in tv and movies. Its real life, its my sons life and its our life and all the other children and adults out there. 

Autism? Really? I had No Clue!

Everyday for the last 5yrs the YuckMouth house has lived, breathed, slept, not slept autism. While I struggle to still make the entire house aware of autism we live it, how much more do we need to be aware ourselves? What we need is for the rest of the world to be aware of it, to know it like we do. But not to just know our autism but everyone else's autism. Because you see autism looks different on every man, woman and child, there may be similarities but its different for each and everyone of them

With today being the kick off of Autism Awareness Month, we the community are striving to let the world know just what autism means to us.

On August 24th, 2005 I gave birth to my beautiful baby boy. Nothing was odd or unsual, he wasn't born with autism stamped across his forehead. There wasn't a test that would tell us that as he got older he wouldn't be like all the other lil boys, that he wouldn't be like my other sons. As time went on, some milestones were missed or delayed, but nothing shouted autism to me. He was just different, and looking back on it now and if I had known what I was looking for I would have known sooner, things might have been different.

I'm not going to quote facts because facts are posted everywhere you look. But those facts aren't going to tell you what to look for.

With Racer his autism was there from the beginning, it was in the way he moved about the house. How he interacted with each of us. He has four older siblings and he just wasn't like them. He didn't talk and the words he had were odd and not normal for first words. But he was persistant, he was frustrated, he was alone. As a mother I did everything I could do help him along I didn't want him to be different, I wanted him to be fine. And even though I had my doubts the entire world said "he's find, he's a boy and boys are slower to develop". I wish those word could be removed from the mouths of the entire world. Because a mothers gut is what is usually always right. At two he was lining up cars, making snake lines with cans all across my living room, I thought he was artistic I was perfectly happy to let my lil boy do what made him happy. At night he would climb out of his crib and fall to the floor and not cry, I thought he was brave. When we moved him to a smaller playpen that was closer to the floor he would rock it back and forth till it fell over I just thought he didn't want to sleep in that either. Never in my wildest dreams would I believe he had autism.

Then we went to the doc for his check-up, he was almost three and had a total of  three words to his vocabulary , dada, turtle, and pizza. He would sit and watch the same movie over and over again and cry when I tried to change it. At that doc appointment she suggested that he might have autism she gave us the number to Regional Center and sent us on our way. I was full of questions and I was very alone in all of this. Because again everyone around me said "oh he's fine, he's a boy and boys are slower to develop"

Weeks went by before we heard from Regional Center, that was a lot of sleepless nights. I wasn't sure how to prepare for it all, I wasn't sure what the outcome was going to be. We arrived at the testing, we sat through the testing and then we waited. They wanted to talk to us after, and we waited. Then we got the talk and I suppose this happens to a lot of parents. They went through all the results how he was seriously delayed across the board, but in some areas he was doing just fine. As I sat there I wanted to scream out JUST SAY IT ALREADY, I wanted to know if he had autism. And finally after dragging my heart through the mud they said the dreaded words "your son has autism". I was given a packet a sort of welcome to autism packet now that I think about it. I was told that someone would be in contact with us in regards to our son and we were sent on our way.

That was twice that we were sent on our way, twice that my mind was filled with questioned I didn't know how to form. And twice that we as parents weren't aware of autism, that the medical profession didn't help us be aware

What is so important not only for the month of April but everyday after is to be aware. We have PSA about cancer and aids and all sorts of other issues, but Autism which becomes worse every day, we have nothing. But parents across the world are dealing with this everyday. Struggling in a world of their own because the outside world knows nothing about us and how to deal with us.

So not just for the month of April I want everyone who reads this to be aware. I want this to be sent to everyone who could ever possibly come in contact with autism and guess what the one fact that I will throw at you is 1-110 children have autism. What does that mean to you?