Autism Understanding and Acceptance: Open Letter to the World

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 us...


Autism means we never know what is going to happen when we leave the house.  A trip to Dairy Queen is usually a huge treat, but if James is having a day where his senses are more out of sync it could be very painful and result in having to leave with no treat at all.  

It means meeting "friends" at the park and watching James choose to play alone because he either doesn't want to interact or doesn't know how to interact depending on the day.  It also means listening to other children ask their parents for friends to come play, but never James. 

It means trying to deal with meltdowns in public places and seeing the looks on other parents faces that indicate their opinion of your parenting.  And me thinking "if you only knew what I was dealing with, you wouldn't judge me".  

Autism is wanting so  badly for your child to express some likes or dislikes.  Wanting him to tell you what he wants for his birthday, or Christmas, or even dinner.  But having to be content with guessing.  When he is feeling sick all he can tell me is "hurts", not where or how, and it becomes a big guessing game of what is wrong, until he throws up.  

Sometimes he is so absorbed in his own world it is more work then it is worth to get him dressed.  Things I know he can do for himself become major tasks because you just can't get him to focus long enough to do it.  I often feel like a broken record asking things over and over again with no sign of comprehension until 30 minutes later when he miraculously goes and puts his shoes on to go to school.


And while they are much harder to see, there are so many good things about Autism.  To me being "Autistic" explains so much about James' personality, his likes and dislikes, and how he thinks and learns.  


It means so much more work at teaching him things that come naturally to other children, but at the same time there is so much more cause to celebrate.  We get to celebrate each and every bit of progress he makes, no matter how small it is.

It means having to look so much harder for his strengths.  But once we find them he can progress so much more quickly.  He is such a smart and talented boy.  

It means that he may not answer our questions very often, but when he does we know he is being truthful.  James has never told a lie.

I am so much more appreciative of each and every smile or brief bit of eye contact.  

While his social skills are lacking, I see the way he interacts with his brother and it gives me hope.  He is truly concerned for him at times and worries about what he is doing and if he is safe.  

Autism is a huge part of who James is.  When we first found out about it the doctor told us to make sure to remember that he "has Autism" he is not "Autistic".  But through this past year I have come to realize more and more that while he is "James" first, he is still "Autistic" and I don't think I would change that for the world. 

March

We haven't been up to too much here, but enough to keep me too busy to post anything.  The weather has warmed up and the boys are spending every minute they can outside.  Unfortunately we have a major cat infestation and they have been using the boys sand box as a litter box, so I hate letting them outside until I get the sand changed.  

We took a trip to Colorado for Spring Break.  But Mikey got sick and I don't think he had as much fun as he wanted to.  Poor kid still has a stuffy nose from it.  James loved playing and getting Grandpa's flag out of the closet so he could say the Pledge of Allegiance.  It is so cute.  

Doug and I had to speak in church a few weeks ago.  Lucky for us they had two confirmations and a ton of new callings.  One of which was calling me as a Relief Society teacher.  That was the first I had heard of it, and wasn't sure if they were talking about me or not.  Then when the Relief Society President was talking me to after I had to say I hadn't ever been asked.  So then I met with a member of the Bishopric and accepted.  I can't say I am super excited.  Probably just the opposite.  I do not like teaching adults.  But I am not as nervous as I thought I would be.  

Mikey decided to put a strawberry on a stick to eat it.

Mikey still loves fruit.  His favorite right now is Blueberries.  But he doesn't exactly say blueberries right.  Instead he calls them Boobies.  So it is kind of funny hearing him ask for boobies all the time.

This is how we find Mikey most mornings.  He pulls his pajamas down to his waist, I think so he has better access to his nipple and belly button.  What a funny kid.  

Baby Boy

Today we had our big ultrasound.  They do 3-d pictures too, so it was fun to see.  We found out we are having another boy, which was not a big surprise since the last ultra sound we had she said it looked like a boy.  We just have to think of a name for him since we have already used all our boy name ideas.  The ultrasound tech said I was disappointed, but I don't think I was.  Last night I was thinking about having a little girl and thought, "I wouldn't know what to do with a girl".  So no I am not at all disappointed, just excited to have another little guy in my life.  

Such a sweet little face!

He kept putting his arms up over her face every time she tried to get a picture  of his face.

Look at those little hands.  Already trying to get that thumb in his mouth.

And the official ultrasound showing the boy parts.  Although I can't really tell what it is.

Just like Brother

Mikey wants so much to be like his big brother.  He has to do everything James does.  When we take James to school, Mikey wants to wear a backpack too.  

Last night when we took James out for Ice Cream for pooping in the toilet Mikey threw a big fit because he had to share a blizzard with Dad (like he always does) instead of getting his own ice cream cone like James.  We ended up having to buy another ice cream cone for him.  It is so funny to watch him watch his brother and try to do just what he is doing.  

The other night we were driving home and he threw his ball on the floor.  He was crying and wanting me to get it for him and I told him I would get it when we got home.  Frustrated at not getting his way he said in his most pathetic voice ever, "I neeeeed that!"  Wonder who he learned that from!

Happiness

About a week and a half ago we got a phone call saying that a pipe in our house in Utah had frozen and burst and our basement was flooded.  That was a really bad night for us.  Not being close we couldn't really go and see how bad it was, but from what we were being told, it was bad.  Later we received some pictures from Tim.  

Most of the walls looked like this.  Kind of weird.

This is the ceiling where it broke. 

It has been really frustrating because we have been trying to find renters, with no luck.  Nobody has even gone by to see it, although we had several people stand us up.  It is funny though because the very next day we started getting calls like crazy and Doug even showed it to two people last weekend who both want to sign a lease.

Anyway... despite this I don't think I have even been happier.  It is kind of weird.  I can think of a million reasons to be a little depressed right now, a lot of them having to do with this new town we live in, but none of that seems to matter when I think about it.  Maybe it has something to do with the 6 lbs of strawberries Mikey and I ate last week, we also made a lot of these:

But I don't quite think that is it.  I think it mostly has to do with this:

I think he is trying to be a cat

 And this:

We had a fun night dipping fruit in chocolate
He was a mess!

 And this:

They are best friends

 And mostly this:

I really wish this picture wasn't blurry 

I don't think I have ever been so content with my role as a mother and my choice to be a stay at home mom.  There are so many things that Doug misses every day that I get to be around for.

• Every morning when Mikey wakes up I have to get him out of bed, then "donkey" then "blanket airplane" and then "blanket hat" which means he wants the blanket on his head.
• Every morning I get to share my cereal with either James or Mikey or both
• James often comes out of my room wearing one of my shirts as a "princess".  
• I get to get James from the bus when he gets home from school and he is always grinning from ear to ear and so excited to be home.
• I get to help Mikey go "potty" every time James does, or every time I change his diaper 
• I get to hear the boys laughing and laughing when they are playing together.  They are really best friends.  And they love each other so much.  I would hate to miss any of it.  

I don't think I have been more in love with these two boys.  And that is why, even though I have many reasons to be unhappy, I have never been happier. 

ZiGgLeS: Welcome!

My sister-in-law makes these scrabble tile pendants.  They are so cute and affordable.  She is doing a giveaway if you post about her shop on your blog so here I go.
This is here blog she has set up for the business:

ZiGgLeS: Welcome!: "I've finally gotten around to setting up a Blog for my Ziggles Pendant shop. I started making scrabble tile pendants this past summer and ..."

And here is a link to her shop.  Go ahead and look around.  My personal favorite of course is the Autism Awareness pendant she just made.

Being Home

It has been so nice these past few week just being home.  The boys are starting to get into a routine and enjoying our new house.  They LOVE that they can just go outside whenever.  Except for these past few days, it has been FREEZING!  

I finally got in to see a midwife and have an ultrasound to find out my exact due date.  I was pretty close with my guess and we will be having a new member in our family sometime around July 18th.  I am not too excited about the way things are done here in Clovis but I am sure it will all go well.  Instead of just seeing one doctor or midwife you rotate through and see them all and then when you go into labor whoever is on call is who you get.  We will find out at my next appointment March 2nd if we are having a boy or a girl.  But the lady doing my ultrasound this last time said she was pretty sure it was a boy, so I am not getting my hopes up for a girl.  

Doug is finally moving into his office on the base.  He and his co-workers have been working out of our garage for the past few weeks, and that has been nice for me.  I can run errands during nap time because Dad is home!  

James is LOVING school.  He is learning a ton too.  His new favorite song is the ABC song (which I don't know why he didn't love it when I sing it) and the other day at dinner he started reciting the Pledge of Allegiance.  Last Saturday he had his first gum in hair experience.  He had some gum during nap time and he was crying, but more like I am tired and whinny crying so we just ignored it for a while.  Finally Doug went to check on him and he had ripped this huge patch of hair out of his head trying to get the gum out!  Poor kid.

He also had some homework sent home which was a family project.  He was supposed to decorate this heart with whatever he wanted.  So we made Mikey his own heart and they had a ton of fun gluing tissue paper on their hearts.  Also we have had to big steps in potty training this week.  Once James was at home playing and he yelled "I go Potty" then he ran in the bathroom and went potty.  Another time at school he asked to go potty.  So maybe he will actually be potty trained before this next baby comes.

Mikey is just as fun and cute as ever.  Although this week I think he is working on getting a few teeth out because he has been pretty grumpy.  He is sad to move back into his own room and misses his big brother.  Soon he will get to move into James' room with him, but he is just a little too small still.  But don't tell him that, he thinks he is a big boy and can do anything.  Every time I take James potty Mikey follows me in and pulls at his clothes saying "pee, pee" or "potty" he really wants to be potty trained like his brother.