April Walks With Autism

2011-01-10T09:17:00.003-06:00

Holy pajamas! I moved my blog! Please join me, please FOLLOW ME!!!!!!

http://aprilsdoorway.blogspot.com/

I promise we'll have fun!

I'm back.... again

2010-12-23T10:22:00.007-06:00

I haven't written since September 24. "Dear Diary, I haven't written since September 24...." ha ha ha sometimes writing a blog is like confession.

A few days ago, a friend paid me a ridiculously high compliment. She said I was a great writer and that my writing touched lives. I'm going to be honest about one thing.

I don't take compliments well.

I can hear my friend Michelle laughing.

Because I don't take compliments period.

But, that conversation is for my therapist. Let's just say -- I was honored but not sure if I totally believe her. Either way, she told me to write a book.

Well I don't know about all of that because truth be told I can barely keep up with my blog!

September! What's wrong with me people? I told my friend that sometimes it's harder to write when there's an "expectation" there. When you know people are out there kinda waiting for you to write something "life changing." Ok, maybe not "life" changing but.....still. I can't just put any old junk out there. It's just not how I roll.

Plus I've had sort of a rough year and writing about it is hard. Getting out of bed has been hard some days. OK most days. But I digress, as I usually do in my posts.

So this year I make a promise - - make that a solemn VOW to write more. And to write ABOUT more. I added "and a few other things too" to the title of my blog. So I'm going to hit on the topic of "a few other things too." And we'll see where it takes us.

I hope you'll come along for the ride!

How can you mend a broken heart?

2010-09-24T19:45:00.007-05:00

It's all about perspective people.

I had a crappy day today. No other way to say it. It was pure crap. Anything that could have gone wrong, did. It just did. None of these things amounted to HUGE deals but man did they make my day....suck.

Some days are just like that, right? We've all been there.

Truth is, I've had a rough couple of weeks. OK months. I won't bore you all to tears with the whys and the hows and the details and the drama but suffice it to say, in the last few months I've loved, I've lost, I've laughed, I've cried, I've cried some more and then when I was all done crying, I found a way to release a few more tears. There have been days when getting out of bed was about the best I could muster. There's been even more days when putting on "the show" was almost more than I could bear.

I'm calling it a mid-life crisis and we'll leave it at that.

But it's allllllllllllllllllll about perspective. EVERYTHING is all about perspective. Stay with me.

This morning my day started with, "Oh crap I didn't get the garbage out last night!" to "OMG the trashcan is full of..... magg....!" to "OMFG my precious munchkin left his "reading light" on the in the van and the battery is dead!" to "No, REALLY the battery is DEAD. As in, drive directly to battery store. Do not pass "go" and for the love of all things holy, do NOT turn your car off," to just a host of things that fell apart one...right...after....another. The day was long. My patience was tried. My head ached. My eyes burned. My heart hurt. I felt depleted, exhausted, emotional, tired, frustrated, angry...and .... defeated.

Stay with me.

10 years ago at this VERY MOMENT ~ this was my perspective.

Look closely. There's a baby in there.

My baby.

10 years ago my precious beautiful 8 day old baby went through an extremely aggressive open heart surgery for something called transposition of the great vessels.

Today, my 10 year old got off the bus, bounding through the door with stories of his day before he even had a chance to take a breath. He laughed and I laughed and we hugged and I kissed the top of his stinky 10 year old head.

And suddenly, my crappy day.........well..........

perspective.

I can deal with a new battery. I can even deal with "ahem" the garbage can. I can deal with Costco being out of Smart Water. I can deal with the laundry piled to the ceiling. I can deal with forgetting to pick up the dry cleaning (again). I can deal with the hurt, the anger the tears and even my broken heart.

As long as it's not his.

Because here's the thing. There's a lot of things I can push and gut my way through. But a life without my kids is not one of them.

Perspective.

People talk about the grass being greener. Here's what I've learned. The grass ain't greener. It's just a different shade of green. And that shade .... is based on your.......

OK, you get it.

"Being happy doesn't mean that everything is perfect. It means you've decided to look beyond the imperfections."

Different. Not more.

2010-09-22T16:54:00.008-05:00

I post a lot about autism. This blog, is called, "April Walks with Autism" after all. But really what I try to talk about is "special needs." "Differently abled." "Not normal." But today we will broach that small line under the title of my blog that reads, "and a few other things too."

Today I write about...
the GIFTED child.
Yep, I got me one of those, too.

But wait? Doesn't that fall into the category of "special needs?" "Differently abled? "Not normal?"

I mean Luke is autistic and he has an IEP.
Jared is gifted and he has an IEP.

So I think it's time we talked about it.

It's interesting. I meet a lot of parents with autistic kids that are sort of embarrassed to talk about their child's autism. Almost like there's this badge of shame in saying that your kid may be less than "whole" somehow. I'm the mom with a puzzle piece tattoo on her a$$ so what does that tell you about how shy I am about it? But when it comes to talking about Jared being "gifted" (see I even put it in quotes) I.... start to squirm. In fact, I think my body temp just went up about 10 degrees and I'm pitting out in my shirt. I don't like it. It's almost like saying, "My kid is better than yours." and I never EVER want to say that.

And then comes the stereotyping and the stigma that comes with having a gifted child.
"Life is so easy for him."
"It must be nice to have things come so naturally to him."
"He's an introverted nerd."
"You probably push him really hard."
"You'll never have to worry about that one."

**Sigh** One at time.

"Life is so easy for him." I could literally write a 40 page blog about this statement alone but instead I'll leave it at: is life easy for ANYONE? And does your IQ really have ANYTHING to do with how "easy" life is? Was it EASY for Jared to undergo open heart surgery at 8 days old? I'm guessing no.

"It must be nice to have things come so naturally to him." Yes, I'll admit. Many academic things come naturally to Jared. Math is part of his DNA (not from me, for the record). He taught himself how to read when he was 3. He remembers pretty darn much...everything. But guess what? Jared struggles in many OTHER areas. Jared has absolutely NO problem solving skills. I know, I know -- I said he was good at math. But for a kid like Jared, math is not a problem, math is logic. We had a situation this summer where he couldn't figure out how to screw the elmo sprinkler onto the hose. 9 years old and doing 6th grade algebra and high school reading but he can't screw a sprinkler on to the hose. Ya feel me on this? I mean he COULD NOT make his mind figure it out. It was utterly amazing to watch. (And REALLY frustrating, too) So, he must be....

"He's an introverted nerd." Introverted - NO. NOT a lick. Not even when we WANT him to be. (((grin))) Nerd? Well that's in the eye of the beholder but if by "nerd" you mean "nose in a book all the time," then you aren't talking about my boy. My Jared loves to be outside and play with his friends and play basketball and be on the Destination Imagination team, and laugh and giggle and PLAY just PLAY with his brother. In other words, he's pretty well rounded.

"You probably push him really hard." NO. NO. NO. NO. and by the way, NEVER. At the age of 3 he sat down and started to read a book. We NEVER taught him to read. Do we encourage him and "push" him to be his best. ABSOLUTELY. Shouldn't ALL parents do that? Do we drill calculus problems into his brain every day for 3 hours after school? No, in fact, he's watching Johnny Test as I type this. We follow Jared's lead. Period.

"You'll never have to worry about that one." ((((SMACK)))) how STUPID are you? Of course I worry about my child! DUH!!!!!!!! Since when does "High IQ" = "nothing to worry about?" Grrrrrrrrrrrrrrrrrrrrrrr......................

My point is, people think that having a gifted child is so easy. And while it's true that in many regards it can be, we have to work and fight for Jared just as much, and sometimes more than we have to fight for Luke. And that... will be my next blog topic.

Until then - - think about this, with autism, we say
"Different. Not Less"
With gifted kids should we say,
"Different. Not more?"

Just because a child is smart doesn't mean they should be stereotyped. Stereotyping and profiling hurts no matter what end of the (pun intended) "spectrum" you're on. Gifted kids struggle with just many things as "typically developing children" and "special needs" children. The things they struggle with are just....

different.

And that kicks off my month long topic of living with a gifted child!

And The Emmy goes to....

2010-09-01T11:41:00.005-05:00

I'll admit, most of my life I've been somewhat of an entertainment junkie. And by somewhat, I mean........totally.

But in recent years, my priorities have shifted quite a bit and I can't even remember the last year I watched the Emmy's. I mean, who has time to WATCH television let alone watch a show that celebrates the accomplishments of said media? Not me.

But not this year. Oh no. I was GLUED.

How many years in the past have we all watched the "documentary of the moment" walk on stage and scoop up their prizes? In years past we've seen made for TV movies ranging from war to depression to religion to politics to disease and everything in between. And it's been great. I'm really happy for all of the winners (hits FF button on the DVR remote).

But this year, I cared. A lot. Because this year, I was up for an Emmy. Luke was up for an Emmy. Anyone who has been touched by autism (and there's a lot of us) was up for an Emmy. It was OUR night. Sorry, Temple, but we're all in this WITH you.

And we won. Big. (May I add, as I predicted in my very own blog post)

I don't know Claire Danes. I don't know Mick Jackson. I don't know anyone at HBO. I don't know Temple. Oh, wait a minute.

Oh ok, I DIGRESS!

So if I don't know these people, why do I care?

Because somehow, someway, people still don't know about autism. I KNOW, right?

And this movie, Temple Grandin - - brought autism to everyone's living room. It's out on DVD now. If you still don't know what autism is, spend the $15 and watch this movie. You'll know. This movie takes you literally inside the mind of an autistic person. And what an amazing mind it is.

The movie won 7 of the 15 Emmy's it was nominated for:
David Straithairn: Best Supporting Actor
Julia Ormond: Best Supporting Actor (she portrayed Temple's mom to PERFECTION)
Claire Danes: Best Actress (you may have heard, she actually played Temple, BRILLIANTLY)
Mick Jackson: Best Director (GENIUS)
Oustanding music composition - did you know the volume of the music was adjusted up and down to try to mimic the autistic experience?
Outstanding camera editing - I'm thinking about that ceiling fan friends. The one that still haunts me.
and of course: Outstanding made for TV movie

Sooooooooooo the Emmy's kind of turned into, "The Temple Grandin show." Because by GOLLY every time they said her name, she stood up and waved. GO GIRL!

Temple Grandin did not say a word until she was 4 years old.
Temple Grandin has had a helluva life.
Temple Grandin has accomplished more than most of us ever will.
Temple Grandin's story is so inspiring, so electrifying, so frightening, so captivating that a made for TV movie about it swept the Emmy awards in 2010.
And she's autistic.

I LOVE THAT.

Every award they handed out, I clapped and I cried.

Because I was winning that award! Luke was winning that award! AUTISM was winning that award!

I love what she says in this clip. I LOVE IT. "I absolutely knew that a mom would do it right."

Wait, I thought autistic people were socially awkward and never knew the right thing to say?

I wonder if Temple herself realizes what an inspiration she is. To all of us. I wonder if she realizes that getting up on that stage - - PERIOD is an inspiration but then the hug........ oh the hug. Those of you on this journey with me -- you know. Enough said. If Temple can get there....so can we. So can your child.

Congratulations and thanks to everyone who had anything to do with getting this movie made. Thank you for using your power and your celebrity to bring autism to the forefront. Thank you for doing it right. Thank you for not only raising awareness, but taking it a step further and educating.

Thank you Temple Grandin. For opening up your life to us. For sharing your story. For being an inspiration. For continuing the fight. For being who you are. For showing us the way. For blazing the trail. Most people who DON'T have autism have the capability to do that. How brave you are Ms. Grandin.

Just be.

2010-07-13T23:16:00.005-05:00

Oh dear blog readers, it has been awhile.

If you've read my blog before, you know ~ I am one of the most honest people out there. I pride myself on giving the brutal truth at all times. So here it comes.

I've been in a hole for 6 months. And I've liked being there.

I think it's safe to say, I'm having (((((gasps for breath))))) a mid-life crisis. Or, is it a mom-life crisis? I'm not sure. Either way, I haven't felt very good in quite sometime. You know, upstairs in the brain part? Also that thing in my chest? In my heart?

I mean for 6 months I've all but avoided human contact as much as I could. It was like if I talked to my mom on the phone, I was afraid I wouldn't be able to fake it well enough and she'd ask "the dreaded question." Same goes for my best friend. Even my husband.

"Dear GOD please do not let anyone ask THE QUESTION."

You know the one.

"What's wrong?"

Because here's the thing. I don't know. I just know......

I ain't right.

So dear readers, why am I crying on your shoulders about my problems right now? I'm not.

I swear.

Here's the thing. Almost 10 years ago I became a mother. To a beautiful "typically developing" boy. Then a few years later I became a mom to a beautiful "not so typically developing" boy.

and *I* ceased to exist.

And I KNOW I am not the only one.

Here's the thing about us autism mamas. We will never
ever
ever
ever
ever
ever
give up the fight.

But it's very dangerously easy to get consumed by the fight.

= uh oh.

So now here I am, Luke is 6 and about to start first grade. His communication and social skills have EXPLODED over the last year. He's doing amazingly well. He's almost there. And even though I know in my heart that he got there due largely in part to the work we've put in, ok -- I'll say it -- the work I've put in, I can't help but ask......."now what do I do?"

Well. I think you're supposed to take a minute and............ breathe.

And once you take that time to breathe.........you might find yourself looking ((((gasp)))) in the mirror. And sometimes we like what we see, and sometimes we don't.

But either way, it's the best we've got, right?

My point in all of this is, as the parent of a special needs child, it's sooooooooooooooooooo easy, so tempting to dive right in. Not just feet first. Full body. And for awhile, you aren't going to come up for air.

= uh oh.

Because after all, if you don't do EVERYTHING you can at EVERY single moment of EVERY single day, then you're a bad parent, right????????

Wrong.

Remember, your children are learning EVERYTHING from you. Including how to parent themselves someday. So teach them to breathe. Teach them to look in the mirror and like what they see. Teach them to stop and smell the flowers. Teach them to be.

And if any of you out there are in a hole.......... get out of it. It's summer. There are lots of flowers out there waiting to be smelled.

"Slow down, calm down, don't worry, don't hurry, trust the process." - Alexandra Stoddard

2010-05-12T14:39:00.005-05:00

Every single day of my life people ask me what autism is.

And that shocks me.

1 in 110 kids in the United States alone are being diagnosed with autism. If you don't know what it means...hang on to your hat. Because autism is about to become "the new norm."

Whatever "the norm" means.

Here's what our friends at Wikipedia have to say about it.

"Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old.^[1] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.^[2] The two other autism spectrum disorders (ASD) are Asperger syndrome, which lacks delays in cognitive development and language, and PDD-NOS, diagnosed when full criteria for the other two disorders are not met."

Autism Society of America says, "Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today."

And here's what Autism Speaks says about it. "Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – NotOtherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders."

OK phew. Here's my definition. I mean, I live with it every day of my life, so I get to throw in my 2 cents, right? I mean, I'm going to anyway so just agree.

I'm one of "those parents" who falls into the "referring to autism as a spectrum disorder." What does that mean? Well, I can give you a long definition but here's how I visualize it in my mind.

Maybe it will help you.

To say that autism is a SPECTRUM disorder is to say that there's this "band" if you will....as shown above. No two cases of autism look alike. Period. Just as every single human being is different, every single human being with autism looks different. This band starts at one and probably goes to 10 billion.... and every single number in between.

If you're at a 1 or maybe even somewhere between 1 and 1,000, you have what some people want to call Asperger's. Now my humble opinion is this: Asperger's is autism. Some people aren't going to like me saying that. It's ok. Some people don't care for the word, "autism" and they want to call it something else. That's fine...rock it out. I'm of the opinion that Asperger's Syndrome is a high functioning form of autism. I'm not the only one who thinks so, either. My friend Temple Grandin agrees, too. But I digress. My point is, that whether or not you call it autism or Aspergers or anything else, you're on the "high functioning" end of the band.

"High functioning" means just that. You function at a high level. You're doing pretty well. You may have some quirks. You may have some transitioning issues. More than likely you've got some sensory stuff going on.

Wait.

I think I just described half of the people in the world? Or maybe all?
As Temple Grandin so aptly put it, "silicone valley wouldn't exists without Asperger's."

But I'm getting ahead of myself. What is a "sensory issue?" Well, you know what your senses are, right? Well if you have "sensory processing disorder" or "sensory issues" one, more, or ALL of your senses don't function.... typically. For example....if you have issues with your sense of sound, a very small noise may actually be PAINFUL for you. When Luke was younger, sometimes his therapist would break out the game ELEFUN. The sound of the fan that makes the butterflies come out would send Luke into hyperspace. I had NO IDEA that sound was probably causing him pain. And if your sense of sight is not "typical" it's possible that fluorescent lighting causes you PAIN or gives you headaches or simply bugs the crap out of you! Let's say you're trying to do a simple activity like getting a haircut. And the sound of the scissors opening and closing are literally causing you pain. Those are just a few simple examples...you get the idea.

Now, if you're a little deeper into that band, say maybe 1,001-5,000 you have everything you had between 1 and 1,000 and then some. Maybe you have the same set of issues but they are more pronounced. They are STRONGER...they are a deeper shade of blue. They are more ingrained. The pain is that much more severe. Your issues are that much more severe. I'm guessing that if you fall somewhere in that range, you've got some communication stuff going on too.

Now let me digress here for a moment. Those of us who are "typical" and in relationships like say.... a marriage may be able to feel me on this. Not only am I a "typically" developing adult (ha ha) but I actually MAJORED in communication in college. I have a DEGREE in the subject. My husband, pretty smart guy. And yet, after 13 years of being together... half of the time, our communication with each other SUCKS.

So can you IMAGINE, can you even WRAP YOUR MIND around NOT being a "typical" communicator? How in the SAM HELL are you EVER supposed to work through 1-1,000 if you can't communicate. Did you hear me? CAN'T. As in, it's not possible. As in... words do not exist. Period. It's not like being deaf. Deaf people can communicate. Autistic people, they CAN'T. Please feel free to take a moment here to google why not. If you find the answer, let me know.

So now, you're getting a haircut, and you have NO WAY of communicating that the sound of the scissors is causing you pain. NO WAY. You don't know how. The words aren't there. The signs aren't there. But the pain is. How do you break through?

Everyone still with me?

So now let's take ourselves to 5,001-10,000. It can be a pretty dark and scary place. Keep everything you've got from 1-1,000. And everything from 1,001 to 5,000. Now intensify it. A LOT.

I've yet to talk about the social aspect of autism. Sometimes, even now, it can be the hardest part for me to wrap my mind around. Here's the thing. When you have autism, at any part of the band, you may not be able to have social relationships.

You know, the things that as humans we crave more than anything else in the whole world?

I mean of course you have impaired social interactions. How can you have or even want social interactions if you can't communicate? I mean, I know sometimes I'm talking to people and thinking to myself, "WHY CAN'T YOU JUST UNDERSTAND ME?" But I can do things to make people understand me. I can explain it in a different way. I can use hand gestures, I can draw pictures, I can use my vocabulary to change the way I'm describing something. But if you have autism, you can't do any of those things.

Can you IMAGINE the frustration?

You know what? I think I'd just want to be left alone too.

The thing I think that is hard for people to understand or perhaps really grasp is the communication piece. How do you potty train someone who can't communicate? You can't. How do you teach someone how to speak? How do you teach someone to eat? How do you teach someone to self regulate? How do you teach someone to WANT social interaction? If you can't communicate, how do you even teach someone that passing a ball back and forth is fun? How do you console a child in pain if there's no way to communicate? How do you explain to someone, "The scissors aren't going to hurt you. Don't be afraid."

So think about this spectrum. Think about the RANGE that is on this spectrum. Think about 1 to 10,000. Think about the fact, that in 1991, the number of diagnosed cases of autism WAS 1 IN 10,000. AND NOW,

it's 1 in 110.

Welcome to the new norm.

Temple Grandin Changed My Life ... Again

2010-04-09T01:26:00.003-05:00

Last week I had the privilege and honor of attending a conference hosted by one Dr. Temple Grandin.

One word: Wow.

Once again, I thought I knew all there was to know about autism. I thought I had read it all, heard it all, seen it all.

Nope. Not even close.

Dr. Grandin said A LOT of really amazing things. The fascinating part about listening to her is that she speaks not only as a PhD, but as an autistic person herself...........what an absolute GIFT it is to get the REAL perspective from her not just from a "clinical" perspective, but from a "real" perspective. As the talks, it's almost hard to listen and focus because you are so in awe of all this woman has accomplished.

Temple said something that just keeps haunting me. My friend Michelle and I looked at the slide and then looked at each other.........not saying a word but just sharing that, "Holy $hit," moment.

"Fear is the main emotion of autism."

What? I thought it was frustration, maybe anger...but fear? FEAR? FEAR!?

Maybe she's got it wrong. What does she know. She's just like all those other "know it all PhD" types. Oh wait, no she's not. She herself has autism.

I just wanted to run home and cuddle Luke. Tell him I'm sorry for every moment that *I* was ever frustrated with him. Apologize for every cue I ever missed.... every moment he tried to tell me something with his eyes that I just didn't get. Give myself 1,000 lashings for every time I FORCED him to Target kicking and screaming and screaming and screaming. And not understanding, not having the ability to grasp that what he was screaming about was not even the fact that the lights potentially irritated his eyes but that perhaps he was *afraid* of the lights all along.

Oh man, I could go on like this all night.............but I have to ignore that pang of guilt in the pit of my stomach. What's done is done and I need to move on. Right?

I could also go on all night how I hung on every single word that Temple had to say. How I sat there mesmerized by her speech patterns and the way she jumped from topic to topic and the rest of us just got to hang on for the ride. How with every word she spoke, every joke she told, I kept thinking, "Wow her mother is a really amazing woman." Because let's just put it out there, back in the 1950's ~ they didn't even HAVE "early intervention." They had sanitariums. And kudos to Eustacia Cutler for refusing that route for her daughter. Because if she hadn't....we may not have the Temple Grandin that we are all inspired by today. I mean, Temple Grandin has an utterly incredible, awe inspiring body of work. And someone, scratch that -- many people -- wanted to LOCK HER IN AN INSTITUTION. Lock her brilliant brain up in a padded room for the rest of her life. What a life you have led, Dr. Grandin and I thank you for sharing it with us all.

I've lived with autism for a few years now. I do my homework people. I really thought I knew what was going on. But I had no idea. And if you think you know it all, or if you have no idea at all, I STRONGLY recommend you click below to watch this utterly amazing presentation by Dr. Temple Grandin. It's almost the exact presentation I saw. It gives the science, the emotion, and the biology of what autism looks like. All told by an autistic person herself. It really doesn't get much more comprehensive than this.

Click here to watch Temple's presentation on YouTube

Click here to vote for Temple Grandin as one of Time Magazine's top 100 influential people

Are you ready................

2010-03-29T17:34:00.005-05:00

I've been neglecting my blog duties.

Again.

Can't help it, y'all! The sun is shining... there are weeds to be pulled and worms to be had.

Luke thinks worms are cute. And I think Luke is pretty cute. So we dig for worms together.

Today is Monday, which means that in just a few short days, World Autism Awareness Day will be upon us.

Did you know that there are only 3 "world" days recognized by the UN? Autism being one of them? Kinda cool. Sorta. I mean, sucks that we NEED a day but kinda cool that autism is one of only 3.

Anyway, I digress. Are you ready?

Autism Speaks is sponsoring a "Light it up Blue" campaign. (You may have noticed the ginormous sidebar?) The EMPIRE STATE BUILDING is going to be lit up blue on April 1. Wow. That's a lot of lightbulbs. I bought ONE lightbulb. I'll be lighting up my house blue, will you?

What about your autism gear? Got a tshirt? No? Well, you should have ordered one from my etsy store! Nonetheless WEAR BLUE on Friday if you have nothing else!!!!

Got your jewelry?

Got your pins?

Got your shoes? NO? That's cuz I made these... they are one of a kind my friends. But admit they are awesome!

Here's the thing. I don't care how you do it. But show your AUTISM PRIDE on Friday. THIS FRIDAY, April 2. Go to the dollar store and buy a puzzle. Tape said puzzle pieces to a tshirt. Just show your support. Show your pride. Please. Take a sharpie and write on a tshirt, "I love someone with autism." or............ "I support someone with autism." or............. "I support someone who loves someone with autism." I mean, whatever. Do your thing.

Because WORLD AUTISM AWARENESS DAY is so that we can all stand together... because we are SO not alone.

Oh, did I mention how I'll be spending World Autism Awareness Day?

With Temple Grandin.

Go me!

Temple Grandin changed my life

2010-03-12T09:34:00.004-06:00

I've read about Temple.

I've even read a few things written by Temple.

But somehow, watching the movie.............the visual representation of what Temple, or a person like Temple (autistic) lives through...........

changed.
my.
life.

I thought I had this thing knocked.

Not a chance.

HBO, I commend you. Thank you for airing a major television event on the topic of autism.
Mick Jackson (director), I commend you. Your vision, Temple's vision...the way you brought it to life, the way you brought it home -- without words.
Claire Daines, I cannot wait to watch you win your emmy, although it will not even begin to give you the accolades you deserve. For you this may have been "just a role," or perhaps even "just a paycheck," but........what you showed us.........was nothing short of a miracle.

I cannot stop thinking about this movie. There's a scene where Temple first walks into her new bedroom and the camera zooms in on the ceiling fan, then back to Temple where the visual stimulation of the blades going round and round is obviously sending her into a state of panic. But then the volume goes up.......every swish of the blades going around and around and around is like a jackhammer in her head. It's everything, EVERYTHING, EVERY.THING she can do to keep it together. It's like you can see the internal struggle she's having with herself, "it's just a fan, it's going to be ok, calm down, down freak out, it's just a fan." (Kudos again to Ms. Daines for communicating all of that with body language and eyes.......... like most autistic folks can ONLY do)

It's ............ a ceiling fan.

Do YOU even NOTICE a ceiling fan when you walk into the room? I know I don't. It's just there.... but for people living with autism........... it can be like a jackhammer.

Think about being in a room with a jackhammer. For 5 seconds. For 5 hours. Or better yet ALL NIGHT.

How would YOU feel?

Wait, how would you feel if you couldn't communicate to anyone how much it was upsetting you?

Yeah, I'd throw a bloody temper tantrum too.

Just think for a moment about a ceiling fan even BOTHERING you. That in itself is a stretch. But now think about NOT HAVING THE ABILITY TO SAY, "Hey, can you turn that jackhammer off? It's driving me crazy."

There's another scene, and I'll hack the heck out of trying to paraphrase it, where Temple is talking to her mother (played brilliantly by Julia Ormond) and she's saying, "You know how people communicate with their eyes? I'll never understand that." Here's what I want Claire Daines to know........... as an actor, you communicated SO MUCH of what Temple was feeling with YOUR eyes. Sometimes I think the mark of a TRUE gifted actor is not in what they say or how they deliver their lines, but it what they don't say. In what they silently express. Claire, you nailed it. I was uncomfortable the entire time I watched that movie. I was tense, I was scared, I was uptight........because you made me feel what Temple was feeling.

And I didn't like it.

If you haven't seen the Temple movie, SEE IT. Because guess what folks? 1 in 91 kids are being diagnosed with autism. Time to start accepting autism as "the new norm." Or at least a BIG part of "the new norm." Watching this movie will HELP YOU understand what autism is.

My son Luke is 6 years old. He was diagnosed at age 2. I've lived with the ups and downs for 4 years. I've been working with groups like Autism Speaks non stop for over 2 years. I've read countless books about autism... COUNTLESS. I've spent HOURS doing research online. I've talked to hundreds of parents who tell me about their kiddos and yet...........

I had no idea.

Because even though Luke is verbal, he still can't tell me what it's like. And I have no doubt that what Temple experiences and what other autistic people experience are different. But just getting a GLIMPSE into the world, into the mind of autism opened my eyes even more.

But this, as a mother..........was by far, what caused the waterworks to start: Temple's mother was dropping her off at a boarding school and suddenly had second thoughts about leaving Temple there.

Prof. Carlock: I know it's difficult when as parents we want our children to be everything we hope for them to be, and if they're not, we think it's our fault, and that there's never ever anybody out there who understands what we're going through. And it makes you feel alone, right? Mrs. Grandin, I'm not an admissions person. I just teach science. But I feel that this school might be the right place for your daughter. I'd love to have her here.

Mrs. Grandin: The doctors wanted me to institutionalize her. And I don't know, just dumping her at a boarding school, it just feels like another way to give her up.

Carlock: But it's not. It's just the first step in getting her out into the world. And I know you saw the children making fun of her, and you want to protect her.

Mrs. Grandin: Yes, of course I do.

Carlock: What parent doesn't want to? But at some point, she's going to hit life head on. Trust me, we know how different she is.

Mrs. Grandin: Different, not less.

Carlock: Different. But not less.

'Nuf said.

And the winner is............ ME!

2010-02-27T14:20:00.010-06:00

Woah Nellie! I got props from Jen at Noting Grace. She gave me a Kreativ Blogger Award!!! I think she may have given it to me because I'm so mad at her for moving to Vegas but, alas, I'll take it anyway!!!!

I was having a few weeks of blog dundrums..... you know...anyone who blogs must get in this funk, right? What to blog about? Time to actually blog? So this came at the right time for me. Gave me the "feel good" that I needed to push forward!

Here's the rulez....

1.Post the award.

2.Thank and mention the person who gave you the award.

3.Pass the award on to seven bloggers whom you think embody the spirit of the Kreativ Blogger Award.

4.Name seven things about yourself that others don't know.

5.Don’t forget to notify your seven Kreativ Bloggers about their AWARD and post links to their blogs.

My Kreativ Blogger Seven are: (in no particular order, of course!)

1. Right back at ya Jen. I don't know if that's "legal" to give it back to the person who gave it to you, but I am BLOWN AWAY by her creations. Check 'em out at Noting Grace. She hasn't even been at this blogging thing for that long and I'm totally addicted to everything she posts and everything she says and every project she does. And, I personally know she's good peeps and even though I might NEVER forgive her for moving away.........I'll always love her and look up to her and strive to be as clean and as organized as she is. (for the record, I will NEVER get there!)

2. Myra McEntire at Writing Finally. She's a great friend and pushes me to blog even when I don't want to. In fact, it's sorta her fault I started to blog in the first place. Even though most of her blog posts are over my head now (about being a "real" writer) I will always love her style and her voice and find something to laugh about. And that's important.

3. Evan Farmer. He's got his toes in a lot of blogs right now so I think the best place to find him is here at his official site. He used to be the host of TLC's While You Were Out. Now he's the host of CMT's Top 20 Countdown. Evan has dedicated his life to many philanthropic causes. Autism being one of them. We (myself hosting events or Autism Speaks) ask Evan to jump, and he truly says, "how high?" He gives and gives and gives and gives of himself. I am so proud and honored to call him a friend. You don't meet too many people like Evan in your lifetime. He is truly a special person.

4. Heather at The Life of Heather Leigh cracks me up with every single post. And that's an important quality in a blog. The thing is, Heather and I went to high school together. We haven't communicated in YEARS and found each other again via facebook. We were both sort of english/writing nerds back then. She for the newspaper, I for the yearbook. Reading her blog is like a nostalgic journey for me. Even after all these years, Heather's writing still has the same raw, honest quality it did back in high school when we didn't know any better than to write what we were REALLY thinking!

5. Southern Savers is my best friend EVER. For real. If you live in the south, make this your BFF too. She shows you how to use coupons to the MAX and get tons of stuff for pennies or even FREE. I don't know how she does it but I love to take advanage of her work! Thank you, Jenny!!!!

6. Diary of a Mom ~ Jess is an autism mama like me. I just read her blog.... and....am in awe. I love her writing. I love her soul. I love her passion. She's a kindred spirit although I've never met her. I don't need to. I know she is.

7. And............ Kari at Ucreate is the SHIZ-BOT! That blog is OFF THE CHAIN.... there are so many amazing, creative, inspiring ideas that when I'm on the phone with my BFF in Michigan and we're on this blog at the same time, we think our heads are going to explode! We are both screaming at the same time, "LOOK AT THIS!!!" "CHECK THIS OUT" "HOLY PAJAMAS!" We can't get to the projects fast enough!

Yikes, seven things about me that you might not already know. Hmmmmmmmmmmm since I'm such an open book this might be a challenge.

1. I love Justin Timberlake in a bad way. I find him ridiculously sexy. Yeah, he's a good singer, (falsetto to rapper and a whole lot in between!) sure he's pretty cute, yep he's got the dancing thing down PAT, but the funny. Ohhhhhhhhhhhhhhhhhhhhhhh the funny. I just love that he can laugh at himself and put himself out there and be SO okay with it. THAT is what makes him so ***SMOKIN HOT*** to me. (And? I'm 12)

2. Freshly pedicured toes and flip flops make me frighteningly happy.

3. I lived in California for one year and that's all it took for me to become a "California Girl." I am in awe standing near the ocean. Somehow, some way I will get back there again. Even if it's to retire to a cardboard box or giant seashell on the beach, I'll be there.

4. I love to read chic lit. Sometimes bordering on trashy romance. Yep. There, I said it. I'm actually a bit addicted to it. Sure, I read "smart" books about parenting and autism, and self help and all of that.........but at the end of the day, I LOVE to get lost in a good story that can take me away from my own life for a little bit. Emily Giffin is one of my favorite authors.

5. I'm an only child. I'm wayyyyyyyyyyyy jealous of those who have siblings and really really really wish I had some. It makes me nuts when siblings fight (as adults) because y'all don't even know how lucky you are to have each other. My boys are best friends, they really, really are and that is something that makes my heart burst with joy and pride.

6. I cannot, absolutely CANNOT go to sleep without a sleeping mask on. I have worn one since I was about 14 years old. Now it's as if my eyes don't know how to stay shut unless I'm wearing one. In a pinch I've been known to use a bandana.

7. My goal is to make at least one person laugh each day. If I exceed that goal, I'm doing REALLY well!

Life is....

2010-02-26T09:48:00.002-06:00

sometimes... just life.

And you do your best to get through it. Sometimes we say, "one day at a time." And sometimes we say,

"one hour at a time."

Because that's all you've got. And you know what?

That's ok.

So right now, at this time of year when we're all in the winter funk and we're wishing and hoping for more sunshine and more hours in the day........I say..... it's ok to just do your best to get by. You don't have to be super parent or superwoman or superman every single day.

Just get through.

The sun also rises. The sun'll come out tomorrow... and all that jazz.

And also? The laundry will still be there tomorrow, so will the dishes, so will the dust, so will the bills, it will all still be there. So just get through today doing the best you can.

And be ok with it.

Happy

2010-02-07T08:29:00.005-06:00

I've mentioned before that Luke is an awesome eater. He's got about 6 total things on his list that he will eat. At all. Period. I know most of you autism parents out there feel me on this one.

One of the things that Luke will eat is waffles. For awhile we had him eating homemade, organic, loaded with sneaky stuff waffles. That was good. And then somehow, someway, we switched to Eggo ONLY waffles. And for about the last year and a half we've been regularly eating, "Waffles with syrups in a bowl." He like us to cut up the waffles and then he dips the pieces in a little bowl of syrup. So "waffles with syrups in a bowl" has become part of the vernacular at the Schmidt house.

The other day I was re-organizing the pantry in all of my spare time and the good old waffle iron was sitting on the island. Luke spots it and says, "I want square waffles please." (Waffle iron = square waffles. Eggos = round.) I say, "Luke you'll have to ask daddy if he'll make you square waffles." (In our house, Jeff is the MASTER of waffles, it's a Schmidt family tradition super secret recipe and they are crazy good, but I digress). So Luke wanders over and asks Jeff if he'll make square waffles. "Maybe later."

Ha ha ha ha ha ha ha ha ha autism parents out there, can I get a LOL for how well "Maybe later," works with our kids?

Jeff turns to me and says, "I just cleaned the kitchen I am NOT making waffles, he can eat Eggos!!!"

I chuckle to myself and head upstairs. Let's see Daddy handle this one.

As I'm upstairs shuffling laundry back and forth......... I can hear it.

"Square waffles please."
"Maybe later"
"I want square waffles please"
"Not right now"
"Dad, can I have square waffles please?"
"In a little bit"
"Dad, square waffles, in the shiny one?" (shiny silver waffle iron)
"NOT. RIGHT. NOW. LUKE."

So I'm just folding laundry in my bedroom when that familiar smell starts to creep up the stairs.

Waffles.

And I don't mean Eggos either.

A few minutes later I come downstairs to Luke blissfully eating his square waffles. I say...
"Wow Luke, you are soooooooooooooo lucky! What did Daddy make you?"

He's quiet.

(We're working on Luke being able to answer questions so I decided to push a bit)

"Luke, what did Daddy make you?"

Another beat of silence.

"Happy."

Speaking of a movie review

2010-02-05T17:03:00.005-06:00

I just stumbled upon this fabulous blog. My friend Tammy is a photographer and member of a camera club here in TN. A few weeks ago, a new book was featured.... about autism. (Really?) So she told me about it. And I googled it and not only found the book, which can be found here but also the author/creator/brainchild of the book here. Her name is Leisa Hammett and she's an autism mom like me, but I'm guessing she's a little higher on the autism food chain because a) her book is published and b) she got a "press copy" of the Temple Grandin movie! Below is an excerpt from Leisa's blog, but I strongly invite you to go visit it for yourself. http://www.leisahammett.typepad.com/

Leisa's Review of the Temple Grandin movie

Whenever autism is portrayed in the popular media, seasoned parent advocates become leery, skeptical. After 13 years on the journey, I've learned repeatedly that in the end, It's All Good. No matter how inaccurate, offensive or off-the-mark the coverage, it means one more person (times many) hears about autism. That's when those of us who go about living with the disorder, advocating for people on the spectrum, trying to make the world a better place for our differently abled, carry on as we always do. Aiming to live and tell our story authentically with as much grace as we can muster (and sometimes we can't and don't,) meanwhile "creating awareness, education, working toward positive change."*

It took "a parent"--Emily Gerson Saines--to justly create HBO's special on the most famous person with autism. Temple Grandin, the movie, premieres this Sat., February 6. Nine-years in the making, Saines did it right. Sensitively. Creatively. Temple was portrayed as Temple. A certifiably gifted woman with high functioning autism who is undoubtedly odd, but not the freak so many during her childhood and young adulthood thought. And in doing Grandin justice, Saines gave just exposure to the rest of us and our truth: autism is odd, enigmatic, awkward. In most every way. But also a gift in it's different-ness. If we are open to seeing beyond the barriers and obstacles--as we neurologically typical people, or "typies," might define them--there lies a gift of their being in our world.

A few in Grandin's life recognized that gift. One, her boarding school science teacher--played by David Strathairn--who remained her mentor throughout her college, graduate, postgraduate and early career years, as she became an expert in animal husbandry and began to design what would amount to half of the humane cattle handling facilities in North America. The others included her aunt, on whose Arizona cattle ranch Grandin first built her famous squeeze-calming machine. And then, her aristocratic, fiercely determined mother. Both are depicted beautifully by veteran actresses, Catherine O'Hara and Julia Ormond, respectively. Grandin is expertly portrayed by Claire Danes, who mastered the autist's strange gait and other awkward body language; plus her loud, odd speech cadence, complete with the long "i's," which betray Grandin's northeastern roots.

Some of the approximate two-hour movie's plot was fictionalized. The drama was based on Grandin's first two books about her life: Emergence and Thinking in Pictures, both which I read more than a decade ago. Some details I could not remember from the books I've read by, and from the lectures I've heard from, and personal conversations I've had with Grandin over the years at conferences and autism-related events. I do not recall the depth of cruelty she suffered at every turn. From the psychiatrist who told her mother Grandin was autistic and then added the popular interpretation of the time, the 50s: infantile schizophrenia, and further insult, blamed the mother's coldness as the cause and deemed institutionalization as the only treatment. (Grandin's mother, Eustace Cutler, who refused institutionalization, writes about these personal horrors in her book.) Grandin ended up in a boarding school for high school because constant taunts prompted her to slug a student. The bullying, ostracizing and catcalls would continue throughout boarding school, college and on the cattle lots where her brilliance was mocked by her sexist peers and the majority of her supervisors. Even while the press began to cover her work.

The film's well-penned slogan: "Autism Gave Her a Vision. She Gave It a Voice." More than a decade after Grandin spoke up and re-engineered cattle handling equipment (for vaccinations and eventual slaughter) for more humane treatment, she began to give voice to autism. And while her work with animals is extremely significant, perhaps her even greater contribution was helping others understand her and the now more than 750,000 people in the United States, alone, living with autism.

Anyone who has seen and heard Grandin speak more than once is amazed to witness what the movie gives testament to: her ability to learn and adapt to a neurotypical world. From year to year, her voice softens, her engagement with individuals and audience deepens, her sense of self and humor broadens.

"Temple Grandin," the movie, is an enthralling look at an amazing woman who has overcome great odds in her life. The eccentricity of a different thinking mind gave a brutish industry a better way to conduct itself. Her autism could see how to engineer the cattle handling equipment and also how the animals with hyper-sensitivities kin to her own autistic ones reacted with the facilities. While Grandin may only represent a small portion of the autism population, with advances, others are joining her ranks to live successful and productive lives within society. And for those who don't master those ranks that society deems most valuable, with her own life, through her books and lectures, Grandin gives us the gift of a road map to understand, guide and help our children become their personal best.

*"creating awareness, education, working toward positive change"--my personal autism-advocacy life motto.

ME TOO! I LOVE THAT!!!!!!!!!

A Good Way to Spend 2 hours

2010-01-27T11:26:00.005-06:00

Recently, we rented and watched the movie, ADAM. It's a wonderful story about a 30ish year old man with Asperger's finding love.... and himself. I won't give my official review because I don't want to taint your watching experience. But whether or not you know someone with Asperger's/Autism.... it ain't a bad way to spend 2 hours. Hugh Dancy blew my mind as Adam ~ after having most recently seen him as the charismatic love interest in Confessions of a Shopaholic. Is this the most perfect representation of someone living with Asperger's/Autism? Of course not. And I don't think it was meant to be. Asperger's is not the star of this movie, Adam is. And.....as we all hope for our own kids.... Adam is so much more than just a man with Asperger's.

"This book"

2010-01-03T23:17:00.006-06:00

I know, I know, I know. The topic this month is, "believe." I get it. I've been talking about "believing in yourself," but yanno what? Sometimes it's kinda hard. I get that. On a night like tonight, I get that more than anyone.

Here's the thing. It's sort of a dirty little secret. But I'm about to let the cat out of the bag.

A year ago, I wrote a book.

Yep, I, me, April Schmidt wrote a book.

Guess what it's about? Come on, guess........ it's going to be shocking.

A little boy with autism.

It's a children's book. A picture book, in fact. And here's the story of how it came to be.

About a year ago, Luke and I were having a really bad day. Sometimes we have those. Luke is REALLY into books and as we were laying in bed trying to wind down this bad day and put it behind us, I was really wishing I had a book. This book. A book that he could "read" and relate to. A book that he could look at the pictures and say, "Hey that's me! I am not alone!" So as I continued to lay with Luke and attempt not to fall apart so that I could escape his room only to go put Jared to bed with a brave face.... I started thinking about this book. And not to get all "Hi I'm Stephenie Meyer and Twilight came to me in a dream," or anything.... but all of a sudden, I could see the this book. The words.....just came. The pictures....just came. And there it was.... this book.

So I immediatley called my writer friend Myra and told her the story. She said, "Well how long will it take you to write?" To which I responded, "It's already written." I literally put my fingers on this very keyboard and the words virtually typed themselves. Then a few days later Jeff came home from wherever he was out of town and since my art skills are about as mad as.... well they aren't ~ Jeff feverishly got to work creating pictures to match my words. And he was awesome about it. He asked me a lot of questions and drew up a story board and drew and re-drew knowing all along that no matter what ever happened with this book his pictures would never been seen because, well..... he's better than I am but he's not quite that good. But he still gave it 110% for which I am thankful. (Woah, I need to catch my breath after that thing I will loosely call a sentence!)

I never set out to be a writer, an author. But... this story obviously needs to be told, right? So I actually started doing some research on how to get this book published. I even bought a few books on how to publish books which is kind of wacky but I went for it. So over the course of the last 12 months I submitted my book to a grand total of 3 publishers. 2 of which outright rejected it and 1 never responded at all. I'm ok with that. Then my life got sorta busy with a billion other things and I put this book on a shelf. And kept saying I'd get to it.

Well, I'm getting to it.

Before me sits an envelope and in the envelope is this book and I'm mailing it out to a publishing house tomorrow. This is a publisher that specializes in books about autism. But, so were 2 of the others. That's OK. Rejection is ok. I didn't set out to become an author so if this never happens I'll truly be ok with it.

And yet, in the last year I have told a very small small select few people about this book. Because even though, "I don't care what happens," I think in a way if nothing ever happens with this book I will sorta take it personally because the story belongs to Luke. And you can 'dis me all you want by saying you don't like my blog, but you can't 'dis Luke by saying you don't like this story.

His story.

So getting back to believing. Because I promised I would blog about that very word this month.

I need my dear readers to believe in me right now. And to believe in this book.

Which, by the way is called....

Sometimes I'm Like A Puzzle.

And in case any potential publishers visit my blog to see if anyone gives a rip about what I have to say, I shamelessly now ask you to tell a handful of people about my little blog and to become followers. It's imporant that publishers think I'm cool and have lots of followers! And believe me when I say, that yes, I would like this book to be published. But NOT because I want to be the next Stephenie Meyer or even the next Eric Carle. But because, I believe (dang! there's that word again and I didn't even try that time!) this story needs to be told. Because with the number of diagnosed cases of autism skyrocketing, society needs to gain an understanding of what autism means and fit it into their defintion ~ a new definition ~ of "normal."

So thanks for believing in me. And thanks for reading. And if you're reading and aren't a follower, please become one. Maybe someday I'll send you a copy of this book.

............... stay tuned!

Believe in the moments...big and small

2009-12-21T18:37:00.016-06:00

Believe in miracles.

Wherever you think they come from.

However you think they come to be.

Just believe that they do, in fact happen.

And while we're on the topic, just what IS a miracle anyway?

Right now, people are talking about the miracle of the birth of Christ. OK that can be considered a miracle.

Sometimes I think it's a miracle that Luke can I can get through Kroger outburst free and I've only spent $20 extra to keep him happy and not $50 and I only forgot 2 things and not 10.

Sometimes I think it's a miracle that everyone in my house has clean underwear on any given day. And I'm not saying that to be funny. I'm saying it because it's true.

My point is, miracles do NOT need to be these "major events." They certainly can be, but don't have to be. Miracles are all around you, everywhere you look. Believe they can happen.

I've mentioned before that my older son Jared was born with an extremely serious heart condition, transposition of the great vessels. He should have died. 25 years ago, the surgery that Jared had didn't even exist. 25 years ago, he would have died. Period. They wouldn't have even bothered trying.

This was the time of my life when I started believing.

Believing in miracles.

Believing in each other.

Believing in myself.

I never thought, ever thought that I would, or even COULD survive that time. It was so dark. So so dark. Our window of hope was so small. The mountain we had to climb was so very high. I was young. My marriage was new and my body was physically broken from giving birth. I remember starting the days after having Jared.... standing in the shower just sobbing quietly. And I'd stay in the shower for a really long time, hoping that if I stayed in long enough, by the time I got out my problems would be gone. They weren't. Sometimes you just have to put on a brave face and fake it 'til you make it. And that's just what I did. I realized then that my life was no longer all about me and that my number one job was to be strong for Jared and to get him through this obstacle. I had to push through. I believed in myself.

One of the somewhat ironic things, looking back, is that you show up at the hospital and are just given a surgeon. It's an emergency situation so there's not really time for second opinions or researching other options. I assure you I have done WAY more research to find a good hairdresser than I did to find the surgeon who would open up my 8 day old baby from top to bottom and operate on the most imporant organ of his body which happens to be the size of a walnut, backwards, and full of holes. Call it luck or call it a miracle. We got the best surgeon in the world. Dr. Edward Bove at the University of Michigan. We got the man who completed the entire surgery and for some unknown reason just didn't like the way it looked and started all over. And Jared has never, EVER had a problem since (knocking aggressivley on wood). I'm sticking with miracle on this one.

And then there's believing in each other. A situation like this one takes a village. This is not a journey that you go through alone. You almost want to, but you can't. Dr. Bove, I believe in you. Every single person from St. Mary's Hospital where Jared was born to Spectrum Hospital where he had his first surgery, to the helicopter pilot, and finally to the UofM hospital, I believe in you. Every.single.one.of.you. Jeff, I believe in you. Cuz I never, ever thought our marriage would survive such a challenge. Our family... I believe in you... because never ever before has a family rallied together to form such a united front. My aunt MaryAnn cooked for us and brought food to the hospital. Each and every one of you cried with us. Held our hands. Were just there. Gave us support in so many ways. People came out of the woodwork that were friends of our parents and families, people we didn't even know. Strangers to us sent us money so that we could afford to stay AT the hospital and be with Jared at all times. I know that helped speed his recovery, and ours, too. And mostly, my dear Jared ~ I believe in you. The moment you were born I knew you were a soul to be reckoned with. I was right.... nothing can stop you. NOTHING. You have NO IDEA how much I believe in you.

OK so my point in all of this is that this is a big one. I mean 8 day old baby survives open heart surgery. Big miracle. Big things to believe in. But, BUT this "big" thing to believe in was made up of a million "little" things to believe in. Little things that could just pass us by each day.... stop and take notice.

Believe in the moments. The big ones. The little ones.

Believe in yourself.

Believe in each other.

Believe in miracles. They are everywhere.

"Don't believe in miracles - depend on them." Laurence J. Peter

.... and yes, Jared still sleeps with that yellow giraffe, every single night!!!!

I believe....

2009-12-11T21:19:00.008-06:00

I need to share this hilarious post!

Anyone with boys will laugh right loud!

http://www.cjredwine.blogspot.com/

Believe

2009-12-09T01:57:00.001-06:00

Today I begin what will be a month long topic. Now, I know what most of you are thinking, "That's great, but you only blog about once a month." I'm really going to try to blog two times a week. Yes, you heard it here first ~ two times a week. They aren't always going to be profound, earth shattering, life changing blogs (ha ha!) but I will try to put words out more regularly.

Believe.

It is my FAVORITE word. I have it all over the place. Plaques, signs, jewelry, ornaments, you name it. I surround myself with the word "Believe."

Now, I have to lay down some foundational groundwork here that is somewhat of a touchy subject. It's about God. I "believe" in God, but I don't "believe" in religion. Hm. That is to say that religion is not for me. If it's for you, I am really happy for you. It's just not for me. Don't want to get too deep into this topic. I hope that's enough.

The reason I explain that, is because believe is usually a word associated with religion. You see it a lot this time of year, "Believe in the miracle of Christ," and of course, "Believe in Santa."

And although those are great applications of the word, they aren't why I became a fan.

Here's what it means to me ~

Believe in miracles (wherever you think they come from)

Believe in each other.

Believe in yourself.

Bathroom remodeling....and autism?

2009-11-30T06:26:00.000-06:00

One of the things I am MOST thankful for is that Luke is potty trained. Something that so many parents take for granted is an amazing, unholy challenge for parents of autistic kids. What with the communication barrier and all. I mean really, how do you potty train a child that struggles to communicate? But I digress, this is supposed to be a post that makes you laugh.

So Luke is potty trained and that's a good thing. He still wears a pull up at night, which ~ as far as I am concerned he can wear one at night until he's 35 because he's a rock star during his awake hours and that's all I ask for.

Such a rock star in fact..............

that during our long weekend, we decided to do a mini re-model of our master bathroom. Part of that is tiling the floor which means that the toilet had to come out.

Which means that the toilet is sitting in the middle of my bedroom floor.

Do I even need to finish this story?

Heck, I'm still impressed as all get out that Luke ran to Jeff and said, "Daaaaaaaaaaaaaad, the toilet won't flush!!!!!!!!!!!!!"

With the fearful strain that is on me night and day, if I did not laugh I should die.
~Abraham Lincoln

"Mom, what are you thankful for?"

2009-11-20T18:29:00.000-06:00

First and foremost, hearing those words come out of your mouth.

Ahhhhhhhhhhhh it's that time of year, Thanksgiving is shockingly upon us. Time to take a moment (if you can find one) and reflect on all that we are thankful for.

And just for the record, not a day goes by, not ONE DAY that I'm not thankful for the many many blessings I have. Even the days when my kids are driving me nuts and I want to kill my husband and I'm over-tired, over-worked, and under appreciated. Gosh, I am still thankful for every.single. second. I mean that.

One of the lessons I work VERY hard to teach my children is, "Be thankful for what you have, not sad about what you don't have." You know, like when my 9 year old is complaining that we won't let him get a DS*I* instead of his plain, boring, pathetic regular DS. Let's be thankful that you HAVE a DS. That the DS even EXISTS, that in our house we have TWO DS's so you and your brother won't fight over them. That this summer when your DS broke, we actually bought you a brand, spankin, new one. That kind of seems like A LOT to be thankful for, doesn't it?

Having a child with special needs can really give you case of the, "I wish-es."

I wish my child would wear really cute outfits. But I'm thankful that he wears clothes at all most days. At least in public. I've accepted the fact that buttons and collars and sweaters and hoods just aren't in the stars for us. I'm thankful for pants with elastic waists so that Luke can get them up and down all by himself while he goes potty.

Sometimes I wish he wouldn't throw a major fit when we go to the store. But you know what? I'm thankful that Walmart sells popcorn and icees which usually keeps him happy.

I wish Luke knew how to share better. I know it frustrates Jared to no end that I force him to give Luke whatever he wants just to keep him quiet. But I'm endlessly thankful that Jared has the patience of Jobe and most of the time doesn't care.

I really wish we could have taken Luke to Disneyworld...... but I am thankful that we were able to realize it just wasn't going to be for him. And I'm thankful that we were able to give Jared our undivided attention for 3 days. He's earned it.

I wish I could do more for Luke. But you know what? I'm thankful for the things I am able to give Luke.

I wish Luke didn't have to ride "the special bus." But I'm REALLY thankful that the special bus exists, that Luke is eligible to ride it and that his bus driver Ms. Bernice and his bus aide Nellie are so amazing and loving.

I wish Luke didn't need special services at school at all. I'm thankful that Luke has such an utterly incredible team that is helping him become the big boy that he is today!

I wish people didn't use negative terms when it comes to kids (not just mine) with special needs. I wish people didn't assume things about me, like that it's OK to say in a hushed voice in reference to someone else, "Oh you know, he's in the special education program." And I'm really thankful that I have the presence of mind not to crack heads open sometimes. What? I'm just being honest here.

Sometimes I wish that Luke wouldn't just suddenly LOSE IT, out of the blue for, what I can tell, is no apparent reason. But I am infinitely thankful that I know WHY he's losing it. The kid's got autism. No more guessing game. I'm thankful to have solutions. I'm thankful that the solutions work. Even if it's just sometimes. Cuz about being thankful for what you have and not being sad about what you don't have? I'd rather have solutions sometimes than still be in the dark wondering what is wrong with my child.

And yeah, you know what? Sometimes I wish Luke would eat like a "normal" person. I wish I didn't have to drive to KFC every single day for "little chicken and brown drink." I wish I didn't have to spend a fortune buying him "pink cereal" (Yogurt Cheerios) for him to ONLY eat the pinks out and throw the rest away. I could probably buy a boat with the money I've spent on things I've TRIED to get Luke to eat that he won't. But by golly, I'm thankful that Luke eats somethings and he's gaining weight (albeit slowly) and we don't have to give him meds to help his growth. (But seriously people, we spend $500/month on fast food chicken alone, really)

Sometimes I kinda wish things like sitting on Santa's lap didn't send him into a state of hysteria. But I'm thankful that he's into Christmas and decorating the tree and cookies and making gingerbread houses and wrapping and opening presents. Because at the end of the day, the picture with Santa is for me, he certainly doesn't care!

Sometimes I wish Luke didn't have autism.

Wait, do I?

I guess my point is that there are days when it gets really dark and really ugly. Being the parent of a special needs child can really SUCK sometimes. In a million different ways for a million different reasons. But you know what? If Luke didn't have autism, he wouldn't be Luke.

And you know what?
I wouldn't be me.

All the things I wish he didn't have, make the things he does bring me......... that much sweeter.

So yes, this Thanksgiving and every day of my life.... I AM thankful for what I have. Doesn't mean I don't still wish sometimes.......... of course I do. I am human. I want life to be easy for my child. Life throws us enough obstacles without adding more to our plate. But Luke has already shown me in so many ways that he is ready to overcome. Bravo, Luke! And to answer your question: I am thankful for you.....

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

2009-11-13T09:37:00.001-06:00

New blog coming soon!

I can't believe the walk is 48 hours away!

2009-10-11T09:00:00.001-05:00

Dear Readers, please excuse this ugly format. It's the only one I could use to make my video work. Next posting I'll go back to normal!

OK, I know my posts are supposed to be about you know, the journey of raising a special needs child. But this week my friends, it's about.......

Holy $hit! The walk is 6 days away!

You see, I've spent about one billion, 4 hundred and sixty two hours planning this walk. Give or take.

Phew... it's a lot of work! And if you've read my previous blogs, you'll know that I've had some moments in this journey where I've questioned... ummmmm motivation. Let's not open that can of worms again, OK?

And you know what I just realized? I AM writing about the journey of being the parent of a special needs child.

THIS is part of the journey.

Putting it out there. Letting go of the fear that people are going to judge you or your child, standing up and saying, "I'm a part of this!" and spreading the word. Because no one.......... and I mean NO ONE knows more about this journey than you do. So if you are reading this blog and your child has a special need that you're afraid or even embarrassed to talk about........ I'm here to tell you....

Get your ass out of the closet.

Because even though it's scary, and even though you might be afraid, you never know when YOUR story could be the inspiration to someone else.

And if you help ONE PERSON, or ONE FAMILY, or ONE CHILD then you have made a difference.

No one's saying you need to chair a walk (no really, it's not recommended). No one's saying you need to start a support group (although that is a good idea), no one's even saying you need to blog about it. But talk about it. Stand up. You'll be amazed at how much better you'll make someone else feel.

And how much better YOU'LL feel.

Do you know how many people I meet in a given week that DO NOT KNOW WHAT AUTISM IS?????????????

A study was released this week that the numbers have changed. 1 in 91. One out of every 91 children are diagnosed on the autism spectrum. And I meet people every day, every.single.day who don't know what autism is. And that scares the hell out of me.

So I'm not going to be quiet about it. And I hope you won't either. Because the only way to educate people about what autism is, or about what living with special needs in general really means, is if we talk about it.

A lot.

Autism is when you stand strong and proud with thousands of other people on October 17 and say, "we're all in this together." So I hope you'll walk alongside me on October 17 and every other day of this journey...even if it's just virtually.

Make an on-line slideshow at www.OneTrueMedia.com

Hey all! I just got news from Clear Channel radio in Nashville that a platter I left there in March has been signed by:
Jordin Sparks
India.Arie
Honor Society
Cobra Starship
Tina Parol
Trey Songz
Plain White T's
Charlie Wilson
Jessie James
The Offspring
The Veronicas
Gavin DeGraw
Ginuwine
3OH!3
Family Force 5
Safety Suit
Elliott Yamin
The Dream
Saving Abel
Brutha
John Legend
Matt Nathanson
Thriving Ivory
Metro Station
Secondhand Serenade

I am raffling this baby off at the walk on Saturday. Tickets are $5 each or 5 tickets for $10 with 100% of proceeds going to Luke's team. Let me know if you are interested in purchasing tickets. I will MATCH anyone who purchases a ticket(s) from reading this blog. YOU HEARD ME!

The whole truth and nothing but....

2009-09-23T22:00:00.001-05:00

Guess who I talked to today? No really, you'll never guess. Oh alright, I'll tell you.

The CFO of Autism Speaks.

Yep, the little blog that could made it's way to the eyes and ears of some people here and there and Mr. Thomas Hetzel gave me a call on Friday. I'm glad I missed the call though, because the weekend gave me some time to really pour over the 990. (Click here if you want to see it yourself.) I'll be honest, it's a lot of accounting stuff that's wayyyyyyyyyyyyy over my head. But from reading the document, there's a few things I know.

$3.9 million in office expenses is unacceptable.

$2.4 million in printing services? Not ok.

Geri Dawson, the Chief Science Officer referenced in The Examiner article as making in excess of $600,000/ year? Good news! It's not true. What is true is that she makes four hundred and something and she got $270,00o in moving expenses.

Nope, not a typo.

$270,000.

And yes, my dear readers and supporters. I *DID* ask the question, "Did you put every article of clothing in it's own limousine to get it from one side of the country to another?"

Mr. Heltzel was very nice. He listened patiently while I asked my questions and at most times, I think was at a loss for words. What I can tell you is this: I got a lot of canned answers. When I questioned Autism Speaks' office on PARK AVENUE (not just downtown Manhattan, but Park Avenue) I was given the standard answer. "We need to have a presence, we need to establish relationships with people in the city of New York, this gives us great visibility, blah blah blah blah blah."

Office expenses? Well, you know that encompasses a lot more than just paper clips and staples. And yes, dear friends... I was sure to make the point that on this level, as a volunteer we have to SOLICIT DONATIONS to get things like paper clips and tape so who in God's name is spending $3.9 million dollars a year, because it's NOT us out here in the field. And to be honest, if I were making a 6 figure salary, it probably wouldn't bother me nearly as much to be soliciting for paper clips!

I asked a lot of questions and he answered in the best way he could, being careful I'm sure not to end up in this very blog you are reading.

So let's cut to the chase.

Here's what I know. Autism Speaks needs to trim the fat. A LOT. Autism Speaks needs to re-think the 4 fold, high gloss, full color , premium cardstock invitation to the kickoff. I'm not sure if the full color graphics in the 100 day kit make the information more important, but I'm guessing if we started printing that in black and white the parents would be just as happy with the information and less frustrated that their fundraising efforts go to such an excessive luxury as color printing.

Here's what else I know. The Examiner article referenced the fact that, "by contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures."

And that's true.

Sort of.

True: Autism Speaks wrote $66,670 in individual grants.

Also true: Autism speaks wrote $865,000 in community grants. And Mr. Hetzel was nice enough to explain to me that for tax purposes, they must be listed separately, but things under community grants include a summer camp in Colorado for autistic children, and community education and awareness projects. And lets' not forget the $162,000 to adult services which aids adults with autism who are, for lack of a better word, misplaced in the world.

My point is, I'm pretty sure families are benefitting from those grants, too.

One more thing: Autism Speaks ALSO paid out $68,000 in "relief" grants for autistic families and adults who needed clothing, shelter, hurricane relief, etc.

Oh wait, I almost forgot: the $30 million + to science research in the United States alone. (seriously I was adding it up line by line and stopped at $20 million).

So can Autism Speaks do a better job doing the very best with the money we work so hard to raise? Absolutely.

But can any of us NOT say the same thing? I'm pretty sure my husband wishes I would stop going to Hobby Lobby so often or lay off the pedicures for awhile so we can get ahead on bills.

Hey, nobody's perfect.

Pride, in the name of love

2009-09-17T02:39:00.000-05:00

Do you ever wish you could live your life over and erase all of the mistakes you’ve ever made? You don’t? Neither do I. My mistakes have made me who I am, quite possibly more than the “good choices” I’ve made.

No one’s perfect.

Today I read something that literally broke my heart. It’s a nasty ~albeit possibly true~ at least in part~ article about Autism Speaks. Specifically where they put the money we all work so hard to raise.

Want to read it?

Are you sure?

Click here.

In a nutshell, it says that Autism Speaks pays their executives too much and doesn’t give enough back to the families. I mean, of course it does. It’s true.

But this broke my heart for many many reasons.

Reason number one: I have spent 2 years of my life dedicated to the Walk Now for Autism. When I say, “dedicated,” you have no idea. Let me give you a clue. Luke hasn’t had clean pajamas in 3 days because I simply cannot catch up with laundry. I could fill the rest of the internet with how much I do, and I’m not saying that to toot my own horn I’m saying it because, it’s just true.

Reason number two: every moment, every single moment I spend on this walk is time I am NOT spending with my children. And so, this is the question I have been asking myself for quite some time: I know I’m doing a lot to help with autism, “out there,” but how am I helping autism in my own home if I’m plopping Luke in front of the TV so I can take a 2 hour conference call? *Sigh* Don’t have that answer. Well I do, but if I say it out loud I have to own it.

Reason number three: in an effort to maintain my deniability I tell myself on a daily, sometimes hourly basis, “it’s for the greater good.” I think what the article showed me today is that maybe it’s really not. And if it’s not, truly, if it’s not for the greater good, then it would seem like I’m just flat out robbing my family and myself for no good reason. Again, not quite ready to own that.

Reason number four: My gut told me all of this a long time ago. I just didn’t listen. Circling back here to the mistake bit.

Four reasons is enough so let’s move on.

Why did I get involved with the walk in the first place? Because I was desperate to meet other families, find other people who were in this sometimes seemingly sinking boat right alongside me. Because I want to be “at home” with these people. Because for one day, just one day out of the year I want to walk alongside thousands of others and have them look at me and think, “I am not alone.” And as we grew and Luke changed and overcame so much, I wanted people to look over at him and say, quite simply… “It can be done.” I wanted people to look at me and look at Jeff and say, “If they can do it, we can do it too. They’ve been to the dark side and are crawling their way back but…. .they’re ok.”

Guess what? I’ve done all of those things. I really have. Gosh I have met some utterly amazing people. People who have touched my life, and inspired me and changed me. Pat Galland I am talking to you. Emily Frimel I am talking to you. Evan Farmer, I am talking to you. Kathy Streng I am talking to you. Michelle Begley I am talking to you. Steve Abernathy, I am talking to you. There’s so many, so so so many more.

So why do I give a shit that the head of all things science research at Autism Speaks makes almost $700,000? Oh yeah, because it would take Tennessee almost THREE YEARS of walks to raise that much money.

It’s OK, I”ll wait while you clean the puke off your keyboard.

But for me, that’s just not the point. Never has been.

I’ve read other smack articles about Autism Speaks before. Lots of them in fact. I mean there’s always people out there wanting to complain and smear a good name. All along I’ve said that other organizations are upset because AS is the biggest and the most powerfulest and CAN’T WE ALL JUST GET ALONG? There’s enough autism out there for EVERYONE to try to fix, really!

In all fairness, I have to say, there is NO other organization in the WORLD that does more for autism awareness. Period. You can’t find anyone to argue with that. May not like HOW it’s done, but it’s done. NO other organization does more for the scientific research behind and inside autism. Don’t think anyone will really argue with that either. I’ve seen it right here in our backyard. Autism Speaks gives millions of dollars in grants to Vanderbilt. And Vanderbilt does studies that, if you qualify, can get you a lot of services FOR FREE. And THAT is helping families. (and helping Autism Speaks………..geeze I need to just stop)

And back to me. What am I going to do? My heart is broken here……. Somehow I feel personally betrayed by all of this. I feel duped. I feel like Autism Speaks broke my trust. Where do I stand? Do I see this walk through? It’s only 29 days away after all. I’m the chair of it all. If I walk away now… I mean I’m truly jumping off of a sinking ship. What kind of captain would I be? Or should I say.. “forget it!” I’m not giving Autism Speaks another moment of my time?

Oh yeah.

I’m not doing this for Autism Speaks. I never was.

Pat Galland, I’m doing this for you. Emily Frimel, I am doing this for you. Michelle Begley, I am doing this for you. Steve Abernathy, I am doing this for you.

Luke Schmidt, I am doing this for you.

Because if nothing else, if nothing else in the whole wide world, on October 17 I will walk alongside you as the proudest mama ever in the history of proud mamas. Because I want all 3,000+ people to look at you and be as inspired by you as I am.

That’s what I’m in it for. Autism Speaks……….what are YOU in it for?

Letting go

2009-08-19T01:18:00.000-05:00

Sometimes I think that the hardest thing in life is letting go.

When you are a child you have a favorite toy/doll/blanket and at some point, your parents force you to let it go. When we’re kids we have no idea why, and truthfully our parents can’t even really reason with us why it’s necessary. But the good thing is, that toy/doll/blanket is just tucked away somewhere. We can still peek at it once in awhile, even hold it up to our nose and inhale that deep sweet smell of sweat and tears and grime and love. Sure we have to put it back again, but the security of knowing it’s there is sometimes good enough. So even though we’ve let it go what we’ve REALLY done, is just learn to live without it.

This is why death is so difficult. You are forced, usually unexpectedly, to let go of someone that is very dear to you. And there’s no looking back. You just….. let go. And it’s over.

I’ve been married for 11 years but once upon a time I dated a boy that I loved with every fiber of my being. We spent 3 years of our lives together and one day he decided that he just didn’t see himself having children. I had to let him go. It was one of the hardest things I have ever had to do. I loved this man desperately as much the day I left him as the day I met him. I felt like my life would never repair. Little did I know, it was the best thing I would ever do. I let him go and…..started over.

When my now 8 year old son Jared was born he had a congenital heart defect and at 8 days old was taken into open heart surgery. When I look back on that time of my life, what is odd to me is that the hardest moment was NOT when they came and told me, “something’s wrong.” Not even when they told me, “Oh my God this is serious, something is REALLY wrong and here’s what it’s called.” It wasn’t even when they took his fragile little 3 day old body in for the first round of surgery. And even though a sea of tears poured out of my eyes as they wheeled him to open heart surgery, the hardest part for me was the day they put him on the helicopter to take him to the University of Michigan hospital. Why? Because at that moment, I had to let him go. I had to trust someone else and put my faith in him that Jared was going to be ok without me. I was only his mother for 5 days at the time, but one thing I knew for sure is that my child needed me at all times. Letting go is not easy, but sometimes the best thing we can do. Clearly this was the best thing I could do for Jared. I let him go and watched that helicopter fly away with my newborn and fell apart. But I had no choice. It was let him go or let him die. I let him go, and his life began. Again.

Today I took Luke to kindergarten. Why this was such a monumental step compared to preschool I don’t know. But it was. We tried really hard to prepare him, we talked about it for weeks, made him social stories, worked really hard at therapy all summer long to get him ready. But he wasn’t ready. And guess what?

Neither was I.

Luke has made amazing strides, and as I’ve said before ~many people who meet Luke ask me, “Where’s the autism?” “He seems pretty ‘normal’ to me.” But today, standing there in a sea of 200 other kindergartners, I couldn’t help but notice mine was the ONLY one screaming. Not the only one clutching his mother, but the only one clutching his mother with such an intense fear in his eyes it makes you want to scoop him up and shelter him for the rest of his life. Mine was the only child who refused, absolutely refused to get in line with the other children. Mine was also the only child whose mother got to walk him to his classroom, with an entourage of 4 other assistants.

We got to Luke’s classroom (he did walk by himself, by the way) and when we got there, I got down on my knees to get to his level. “Look at me, Bubbah.” No looking. He knows. He knows if he looks at me he’s got to own it. And there was no way Luke was going to own this one. Luke was not about to let go. So how could I?

3 members of the entourage stood there, as if to say, “well, what are you going to do now?” And honestly I had no idea. My son, my precious baby, was having such anxiety, such fear that the terror in his eyes was causing me to falter.

I could almost hear the propellers of the helicopter starting to spin.

But today I had a choice, right? I could have told his entourage to screw off, that I was going in with him today. And damnit I could have held his hand, held him all day long if that’s what it took to make him feel better. Better yet (and this thought crossed my mind) maybe I should just home school him? Maybe I should take him back to his preschool for one more year? Maybe he’s not ready?

The propellers are getting louder, I’m starting to feel the wind kick up.

The moment of truth.

The entourage is waiting for me to make a decision.

And I let him go.

And just like Jared, today Luke started a new life. A life without me. A life of independence from me. When his team literally pried him away from me (and it took two adults to do so) they may as well have ripped my heart right out of my beating chest, because that’s what it felt like.

Letting go is one of the hardest things in life. But most of the time, it ends up being the best thing we can do.

After he left my arms, I ran to the stairwell around the corner and didn’t look back. I just sat there and cried. I cried while I listened to his screams.

Because autism is when you can’t communicate why you are so bloody scared of a classroom.
Autism is when the transition from summer to school is so painful all you can think to do is scream.
Autism is when things that are new cause you so much anxiety, it actually hurts.
Autism is when you don’t want to let go of things that are precious to you, like your routine. Or your mom.

Overcoming autism is learning to let go and being ok with it.

Wait a minute, being a parent is learning to let go and being ok with it.

Let the helicopter come. I’m ready. Luke’s ready. I let him go. He let me go. A new journey begins.

When I picked Luke up, he was smiling. His entourage gave me a good report and were extremely encouraging about his day. His screaming lasted about 30 minutes, as did my tears.

And Luke got not one, but TWO new transformers today!

Cookies and werewolves....

2009-08-18T01:53:00.000-05:00

I know that my blogs are supposed to be about autism, but I can't resist linking to Myra's blog today.......... once again, it displays one of my many talents. And by "talent" I mean flat ironing a curly wig and hot glueing it to a werewolf statue. You just have to see it to believe it. Click here to go to Myra's blog. And? Myra is just funny and her blogs will make you laugh. And think.

Also while you are here, Christie's Cookies is giving away $10,000 to a charity! Please click here to vote! Enter "TN Walk Now for Autism" in Nashville, TN as the event! There! I talked about autism! =)

Shameless self promotion

2009-07-24T09:31:00.000-05:00

Well, in case you haven't figured it out, I do a lot of work with Autism Speaks and the TN Walk Now for Autism. I've mentioned before why I feel it's so important to raise awareness but... I'm going to say it again.

This week a group of high school kids asked Autism Speaks to send someone out to talk to them about autism. How cool, right? They wanted to learn more! And my "more," I mean, "at all." Of the 42 kids in that room with me, ONE of them even knew what autism was.

Newsflash: 1 in 150 kids are being diagnosed with autism in the United States. In the UK it's estimated that the numbers are more like 1 in 67. We need, *NEED* to educate the masses.

So I was thrilled to have the opportunity to teach these kids about autism and what it looks like and I encouraged them to go tell 10 people about what we talked about and make the information viral. I mean, Comic-Con and Twilight are trending topics on Twitter and yet autism is not? Really?

The reason I am attached to the walk is because, it's a day for all families to join together as one. When we can bring our kids and let them scream and throw tantrums and NO ONE CARES. No one even looks over at you, because their kid is doing the same thing! It's a day when we can just all be together and support each other and raise awareness and be PROUD of our autistic kids and proud of ourselves for surviving one day to the next. It's a good feeling.

There's also that other dirty little reason that no one wants to talk about...and that is the raising money piece of it. Yuck, my least favorite part. But one that has to be done. Even though Toni Braxton and Ernie Els donate their time to do PSA's for Autism Speaks, unfortuneley NBC and the like don't donate air time. Now, this is just one of the zillions of things that AS does, but I'm telling you, more people say to me, "I saw that commercial with Toni Braxton.." than you can imagine. And THAT is awareness. THAT is spreading the word.

Of course Autism Speaks is really more about science and research and figuring out solutions. They have made amazing strides and I'm lucky to say I live in Nashville because AS gives millions of dollars to the Vanderbilt Kennedy Center, which was recently named an ATN site(Autism Treatment Network) thanks largely in part to grants from Autism Speaks. It's nice to see the money come back to a local organization that helps many local families as well as performing large scale research programs that help thousands. It's all good stuff.

So having said alllllllllllllll of that......... this year, I decided that living in "Music City USA," we had to tie music into this somehow. So... together with Rose Music Group (a fabulous special needs music education provider) I'm hosting a benefit concert.

Because I don't have enough going on, right?

But, as I've mentioned before... I can't stop.

So here are the deets! ROCK THE WALK Saturday, August 1 at The Nashville Palace. Featuring Rissi Palmer, (that's her singing "No Air") The Rust, Ashley Ray, Bethany Anne, Britten (who recorded with my boyfriend John Legend!), Brinn Black, and Rick Seibold. And remember the total cutie from TLC's While You Were Out? Evan Farmer? He's hosting. Because he hearts Autism Speaks. And a very, very special performace by Katie Chance. Katie is 11 years old and has autism. She's going to get a post of her own because last time I saw her she brought me to tears. Watch this one, people, she's going to go far. 7:30pm. $30.

Here's the best part. Everyone involved with this concert has donated their time and donated their space and donated their services, so 100% of that $30 ticket price goes directly back to the TN Walk Now for Autism AND Rose Music Group.

Why Rose Music Group? Because Tatia Rose is developing an autism music education DVD which she will then give to families FOR FREE. Wow. Music is an absolutely amazing and essential way for autistic children to express themselves. This is a wayyyyyyyy cool program!

It's important work. It's important to spread the word. It's important to educate and raise awareness. So I hope you'll help me. And for those of you in TN, I hope you'll join me at the concert! It's going to be a GREAT night for a GREAT cause!

Click here to make a donation to Autism Speaks and the TN Walk Now for Autism.

Things aren't always what they seem

2009-07-14T16:12:00.000-05:00

Since Luke was diagnosed with autism almost 3 years ago, I’ve given this topic a lot of thought. It has come to a head for me several times in the last few weeks so of course the best thing I can think to do is write about it.

We went to Arizona a few weeks ago to visit my parents. I was scared to death the travel with the boys, sans husband. You never know how Luke is going to react. Airline travel presents a whole host of issues for autistic kids. Busy airport, unknown scenarios, lots of transitions, waiting, having to take shoes off (OMG!), handing over security items TO security, loud noises, strange people, on and on and on. Then we get on the plane to succumb to confined spaces, loud noises, the expectation to be quiet and sit still for hours, etc, so on and so forth. Last time we traveled he did “ok” but Jeff was with me so we were able to manage things with a bit more ease. This time it was just me, an overstuffed backpack for each of us, and a laptop for me to carry as well (so the kids could watch movies of course!). So hands full, we headed out.

I encountered one of those moments where I actually felt bad, guilty even for selling Luke short, even in my mind. He was…….

a PERFECT traveler.

He was SO excited to go on the airplane! I think the anticipation alone of getting to the airplane helped him to overcome all of the actual airport drama. He carried his own backpack the entire time, took his shoes off and placed them in the bin on his own, followed my directions, stayed close, and listened well. He marched proudly through the tunnel and onto the airplane where the loud engine noises and tight spaces didn’t bother him at all. He buckled himself up as though he were a seasoned business traveler. Sure, he got a bit antsy at times when he couldn’t understand why it took so long for the brown drink cart to get to us but generally speaking, he was utterly amazing.

On the way back home, we had a one hour layover in Houston. Needless to say after spilling a large brown drink everywhere and making 2 potty runs, we breathlessly made it to the gate as they announced, “Last call for Nashville!” We hustled down and got in our seats as everyone gave us the evil eye. We got in our seats only to sit on the tarmack for 20 minutes while they attempted to fix the air conditioner, to no avail. Um ~ think about this people... Houston, Texas to Nashville, Tennessee with no air conditioning. Really? I know there’s the whole “once you get up at high altitudes it cools down,” bit but, REALLY? So Luke is getting a bit restless as we sit on the tarmack. At this point, I assure you, I am having a more difficult time keeping it together than he is. He starts kicking the seat in front of him. Not super agressivley, just more, putting his feet on the seat and then locking his knees down to create a gentle bounce. This must have really irritated seasoned business traveler with his snazzy Bose sound system attached to his iphone. (Purchased, no doubt, via the Skymall catalog) He turned around, and no, he didn’t glare at Luke. He glared………….at me. And everytime Luke bounced the seat, Dude’s heavy eyes came back upon me.

I’m going to quote my own damn blog right now. “Grace: something we should offer each other more often.”

It’s at this point I want to scream, “DUDE! REALLY? The kid has AUTISM! He is NOT screaming, he is NOT beating the crap out of me, he is NOT throwing things, he is NOT thrashing everywhere, Do you have ANY IDEA which a HUGE deal it is that he is ONLY bouncing your seat?”

Instead I say to Luke, “No no Luke, stop kicking the seat or that man is going to get really upset!” And then redirected Luke with some sort of magic trick I had in the backpack and did I mention there was no air conditioning so all the while I am LITERALLY dripping with sweat?

For the rest of the plane ride, I couldn’t help but wonder: if autism had a sign, a visual signal to people, would it make it easier for others to understand? Would it make it easier for people to offer “us” (autism parents and peeps) grace? I mean, I know I’m his mother, but take a look at Luke ~ he’s a beautiful child (she says with no shame whatsoever!). You can’t SEE it. There’s nothing about him that looks, “off,” at all. There’s nothing, “not normal” (ha ha) about the way he looks.

As a society, I think we tend to give grace in the more “obvious situations.” A wheelchair. A cast. A brace. A cane. A walker. Even down syndrome children tend to have a specific look that marks them as special. Children and people with physical disabilities often have a marked trait that shows them as unique. A missing hand. A crooked neck. A shorter leg that creates a limp. An arm that stays bent all the time. Muscles that don’t work how they should, creating visible signs of atrophy. Autism doesn’t have any of that. Autism has screaming, physical violence, hands over ears, screaming, heads banging against walls, flapping hands, kicking, screaming, throwing, thrashing, anger, walking on toes. And does society know that’s what autism looks like? No. What society knows is...

that’s what a temper tantrum looks like.

I had a tshirt made for Luke last year that says, “Hey! Keep staring and you might just cure my autism!” I usually wear 3 autism awareness bracelets at once, hoping, praying that someone will put it all together. I’ve made my full time job trying to raise autism awareness and I wonder, “would it just be easier to put a big tattoo on Luke’s head?” “I have autism, deal with it?”

I guess my point is, I wish it didn’t have to be this way. I wish we didn’t have to spell it out. I wish it didn’t take a special “look” or a marked characteristic to make people understand. And herein lies the reason. The reason why awareness is so important. The reason I have dedicated countless hours to Autism Speaks. The reason why, even though I pull my hair out on most days because my cup SO runneth over, I can’t stop. I want, I NEED society to reach a point, where we all just “get it.” Where I don’t need to explain. Where the masses understand.

But the other side of the coin is, we can apply this to different parts of our lives, too. It’s not just about “special needs.” Sometimes it’s about “people needs.” If someone is more quiet than usual, it may mean that something is weighing heavy on their heart. And then again, it might not. It might just mean that you, as a friend need to be aware that things are changing. Offer grace, offer space. Sometimes people do things that are motivated by reasons we don’t understand. Things that are out of character (to our eyes). Our job, as humans is to try to understand. To get behind the reason, and sometimes even be a crutch should that person begin to fall. And sometimes, even as a grown up, don’t you wish you could put a tattoo on your own head that says, “I’m just not up for it today!” or “Leave me alone!”

We need to remember these moments, our own days of struggle when we are looking out at others. We need to remember that there were times that we were children ourselves and we don’t even remember kicking the seat in front of us.

We also need to remember that walking in someone else’s shoes can sometimes be a much bigger pain in the a** than walking in our own.

Now I know my ABC's

2009-07-03T02:25:00.000-05:00

So wow. People are starting to read my blog. So for those of you out there who don't know me personally, here's the abc's on who I am, today anyway.

a- April, it’s my name.. or so they tell me. In any given day I don’t hear it too much. Everyone I know has a nickname for me, including Myra who calls me, “Hooker,” Jeff who calls me, “Pet” (it’s a joke), and of course the name I’m called the most is….”MOM!!!!!!!” I would be remiss if I didn’t include autism under “a.” So I will say ~ autism: it’s part of my life but doesn’t define my life.

b- Boys. I gave birth to two and married one so I’m outnumbered!

c- Chiropractor. I’m one of “those.” I’m addicted. I love mine. He made my headaches go away. Without meds. And I used to get A LOT of headaches. Also? Candy. I friggen love it. The sugary kind like nerds or runts or gummy bears or orange tic tacs or gobstoppers. It’s really good for my 6 pack abs.

d- Doctors. I have the utmost respect for them (see: C). Dr. Edward Bove at the University of Michigan spent almost 6 hours repairing a heart the size of a walnut that had all of it’s arteries backwards and several holes in it. That heart belongs to my son Jared, and it’s one of the best hearts I will ever hope to know. When he was done with Jared’s surgery, there were 4 more families in the waiting room that he had to work on next. Wow. There are no words. Just ……… none. OH! And DANCE! I love to dance. Just the "let it all out," "get your groove on," "work it out!," "get down with your bad self," kind of dancing. Don't get to do it nearly enough so I usually just make up reasons to.

e- Expectations. I think I have a problem with them. I set them too high. Sometimes, people I encounter fall short quite often and it breaks my heart. I don’t mean too, I just think things like common courtesy and respect should be expected of people. Call me crazy.

f- Frogs! I love them, I have a little collection of them. It’s a little private joke because I grew up WAY in the country and the first time my nana (see: N) spent the night at our house, she couldn’t figure out what the he** all that noise was. Frogs. In the pond. Then she and I had a frog thing going on and I’ve kept it alive, for her. They always remind me of her.

g- noun: My mom. Her name is Grace. My staunchest supporter. My children’s staunchest supporter. verb: something we should offer to each other more often.

h- Howard Stern Truth: It’s a phrase we use in our house to refer to the absolute truth. First I have to admit, I have a crush on Howard Stern. You heard me, a crush. Because his brutal truth, honesty, and willingness to unabashedly and unapologetically say what everyone else is thinking is ridiculously sexy. And that’s where the Howard Stern truth came from. No BS, just tell it like it is. (See also: Q)

i- Irie. It’s a Jamaican slang word meaning: to be at total peace with your current state of being. The way you feel when you have no worries. Several years ago there was a 1-800 dial a crystal ball commercial going around and the woman reading your future said, “Everyting gonna be irie.” Then Brad Pitt said it in Meet Joe Black when he turned into a Jamaican woman (really?) and it’s become sort of a joke in my family and yet we tend to say it in our darkest hours and it somehow makes everything seem….irie.

j- Jared, my 8 year old. He is my heart.

k- My middle name. No really, it’s Kay. After my Nana (see: N) whose name was Catherine but everyone called her “Kay.”

l- Luke, my 5 year old. He is my soul.

m- Motherhood. The greatest gift I’ve ever been given.

n- Nana. Mine. She was my favorite person in the whole world. She died 10 years ago and I miss her every single day. And I’m still mad at her for leaving this world before she got to meet my beautiful children and share this journey with me.

o- Opinions. I have a lot of them. And I’ll tell you about them anytime you ask me to. But here’s the thing: I know you do too, and I’ll always respect that. God Bless America.

p- The first of two Babs quotes: “People who need people are the luckiest people in the world.”

q- Question. Don’t ask me one if you don’t want the answer. I will always answer a question in the most honest, open, obvious way that I can. That’s just me. (See: H)

r- Read. I love to. I read a lot of books about autism and education and important “stuff.” But the dirty truth is that I LOVE to read chic lit and romance and brain candy at the end of the day to just turn my mind off. I can blast through a book in a day if it’s decent. I won’t be able to tell you a single characters name within 24 hours of reading it, but while I’m in the moment, I’m lost and sometimes~that’s just where I want to be.

s- Silly. I really am. I love to be, I have to be, it’s part of my existence. Here’s another quote I love, “He who laughs at himself never runs out of things to laugh at.” Ok actually that was in a fortune cookie but I kept it and have it taped to my fridge.

t- Time. I really wish I had more of it. Teacher. Really wish I had become one. I still might.

u- Underwear. Luke ALWAYS wears it backwards. He KNOWS it is backwards and he doesn’t care. I have to say, it’s really cute. He always has at least one cheek hanging out. Oh, and they are usually inside out to boot.

v- Volunteer. I think I do way to much of it, but I can’t stop. If I have something to give, I want to give it. I do a ton of work with Autism Speaks and the TN Walk Now for Autism, as well as forming a support group here in Spring Hill and working at my children’s schools... a lot.

w- “whatever” ranks up there with one of my favorite words. Sometimes, there’s just nothing else to say.

x- rated thoughts about Justin Timberlake and Robert Pattinson. Sorry. I’m 12 at heart, what can I say? OK in this case, 16?

y- Yentl. Yes, Yentl. The Barbra Streisand movie. Shut up. I love this quote: “The more I live, the more I learn. The more I learn, the more I realize, the less I know.”

z- ZZZZZZZZzzzzzzzzzzzzzzzzzzzz I wish I could get more of them.

More on sweating!

2009-07-01T15:41:00.000-05:00

Raise your hand if you get a million "forward" emails in any given week pertaining to who-knows-what because you automatically hit the "delete" button when you see them?

Whoosh. That was a lot of hands going up, I felt it all the way through cyberspace!

Well, I'm on that list to be sure ~ and this week I got this email from my father-in-law and it was a letter that Erma Bombeck wrote. The mouse was hovering over "delete," but for some reason, I opened it instead. Who knows why.

I read it, a little bit stunned. Given what I wrote in my last post, I was kind of shocked to realize that Erma and I share(d) a brain. Crazy. So I wanted to share with you what the late, great Erma Bombeck had to say had to say about.......

sweating.

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck (written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, 'Later. Now go get washed up for dinner.'

There would have been more 'I love you's' More 'I'm sorry's.'

But mostly, given another shot at life, I would seize every minute.
Look at it and really see it.
Live it and never give it back.

STOP SWEATING THE SMALL STUFF!!!

Don't worry about who doesn't like you, who has more, or who's doing what Instead, let's cherish the relationships we have with those who do love us.

Wow, that's good stuff.

And finally, this ~ another quote from Erma that I just love:
"If you can't make it better, you can laugh at it."

YES!

Don't sweat it!

2009-06-20T09:28:00.000-05:00

Before kids, I was one of those people who liked things, “just so.” A place for everything and everything in its place. I was, what you would call, “anal.” In general, I am a very detail oriented person. And a planner. So I like to plan everything down to the very last detail.

And then I had kids.

And I tried it for awhile, I really did.

When I had one child, it could sorta manage it. I mean he would nap and I could tidy up. We weren’t outnumbered yet. And then I had #2 and….well now things were technically tied up but in reality the energy of two boys wayyyyyyyyyyyy outnumbers the energy of 2 grown ups. And then Jared started to get a bit older and get into stuff (read: needed to be chauffeured everywhere) and Luke got diagnosed with autism (read: needed to be chauffeured everywhere, too) and then I got a part time job and then I started doing all kinds of volunteer work at the school and with Autism Speaks and sometimes I even throw in a minute to craft and if I’m lucky I sleep in any given day. I mean, sometimes I even make dinner.

Most days I think to myself, “If someone were to just drop by for a visit, I would cry.” Because usually you can’t even find the floor in my house. I’m not even kidding. It’s that bad. Laundry piled to the ceiling (clean or dirty), dishes in the kitchen (clean or dirty), books, papers, magazines, school work, bills, etc. I mean the office is a wasteland. I do have standards when it comes to the bathroom and praise God for the invention of Clorox wipes because at least I know that my toilet and sink can be sanitized in under a minute. Phew! I won’t even discuss my bedroom which is, in my house the room where everything gets dumped/hidden until I can, “deal with it later.” And later is a long time from now.

But the reality is, you have to pick your battles. And this just isn’t my battle right now. It can’t be. When it comes down to making the decision of spending time with my kids or mopping the kitchen floor, I’m going to pick my kids every single time. I have a child with autism. He requires a lot of attention and a lot of time. Guess what? That’s the greatest investment of my time I could ever think of. I know deep in my heart that one of the reasons that Luke does so well is because I have devoted so much time to him and his therapy and his recovery. And I don’t just mean driving him around. I mean getting down on the floor with him and doing the work. I mean pushing him for his words when he doesn’t want to use them and I know it’s going to make him scream even louder but we do it anyway (and it pays off almost every single time). I mean sitting with him outside while he jumps on the trampoline and swims in the pool and gets his gross motor stimulation so that he is more receptive to learning when we come inside. I mean deep frying gluten free french fries 12 times a day when that’s all Luke will eat. I mean squeezing his legs until my hands hurt and he’s laughing hysterically because the deep compression makes him feel better. And yes, I mean the quiet moments when we read stories at the end of the day and once in awhile I even get a cuddle.

At the end of the day……… no really, at the end of the day, my days, I don’t want people to say, “Wow, April really kept a clean house, April really knew how to plan a party down to the last detail, April always kept her van really clean.” What I pray that people will say, “Wow, April led a great life. She raised great children, she gave back, and she made a difference. She was a great friend, a great liver of live, a great wife, and a great daughter,” and God willing my own children will say, “she was a great mother.”

In the big scheme of things, no one will ever remember what kind of food you served at your party, as long as they had fun. No one and I mean NO ONE will remember how many days you didn’t shower before you dropped your kid off at school. NO one will remember the day they stopped by your house for a great cup of coffee and even better conversation and you had piles of laundry on the floor. No one will remember, or for that matter even notice that you wore pajama bottoms on an emergency run to Target.

When we went to Atlanta a few months ago, we were meeting a very dear friend of mine from college that I hadn’t seen in 10 years. I really wanted to make sure we all looked our best. OK, just clean. When we left for Atlanta in the morning, Luke did NOT want to get dressed. Fine. I threw the clothes in the van and figured we’d just change his clothes on when we arrived. I was desperate to just get on the road without a fight. We made a pit stop along the way and I managed to get Luke into his shorts and shoes. Phew! More than halfway there, but he was still not willing to put a shirt on. He was pretty enthralled with the skateboard on his jammies. Ok, don’t panic, we still had 2 more hours to go. We arrive in Atlanta, just moments before we are about to see Rick and once again, I attempt to put Luke’s cute, and clean shirt on. He was not having any part of this. And he was screaming about it. And not only was he screaming, he was using his words and making beautiful sentences like, “I want skateboard shirt! I don’t want fishy shirt!” So my choices are ~
a) continue to argue with Luke until the screaming and the fits escalate into pure ugliness and this puts everyone in a horrible mood for walking around World of Coke
b) force the shirt on him by literally pinning him down and wrestling the shirt *I* want on to him or
c) see picture to the right

And guess what? Rick never said, “Wow, check your kid out, he’s wearing a pajama shirt! You are a horrible mother!” And ya know what else? I posted the pics on facebook and this blog and no one wrote me a letter in horror about the fact that Luke was wearing a pajama top, in fact, I’m pretty sure, no one even noticed.

Don’t sweat the small stuff, and it’s ALL small stuff.

The only one stressed out about Luke’s shirt ~ was me.

And guess what? The Mc Donald’s cups and the crumbs and the stray French fries will be in your van tomorrow. The dishes? Sorry but they’ll still be there tomorrow and they’ll be more crusty then they are today. And unfortunately, the laundry fairy isn’t showing up anytime soon. But your kids, they are right here, right now, and you’ll never get this moment back again.

And maybe it’s a teaching moment, and maybe it’s a silly moment, and maybe it’s a loving moment, and maybe it’s just……….. a moment. But it’s yours to cherish. It’s yours to make of it what you will. And that is the greatest gift you’ll ever be given.

So yes, eventually we make time to clean the house and tend to the details and sometimes it even gets done all at once and by that time we are so tired that all we can think to do is pass out, but in reality~

Don’t sweat the small stuff, and it’s ALL small stuff.

And that’s easy for me to say, because I’m on vacation right now! =)

Destiny

2009-06-08T15:44:00.000-05:00

The real test of a man is not how well he plays the role he has invented for himself, but how well he plays the role that destiny assigned to him.-- Jan Patocka

This is one of my favorite quotes, and I’ll tell you why. My first son, Jared was born with a very serious congenital heart defect called transposition of the great vessels. It’s where the two main arteries of your heart are switched and that combined with a series of holes in his heart meant that the chances of Jared surviving were not strong. I came home from the hospital after having him and was in a great state of depression. I had one of those calendars where you flip each day and there’s a new quote. This was the quote that was up on the day I came back from the hospital. And a lightbulb went off in my head. This was truly, a turning point in my life.

The real test of a man is not how well he plays the role he has invented for himself, but how well he plays the role that destiny assigned to him.

You see, my whole life I had thought about getting married and having babies. You know the whole “white picket fence” thing. When I found out I was pregnant, me in all of my “type-A” glory starting planning every moment. Yes I was one of those women that had my bag packed for the hospital two months early “just in case.” I couldn’t handle the thought of anything going wrong or, heaven forbid, not according to plan. My plan.

I couldn’t wait to have my baby via a totally painless birth, bring him home to his pristine and perfectly decorated room, put him in darling little outfits (that he would never spit up or poop on), sit around and coo at him all day long (and look fabulous doing it) , and then sometimes take him out to show him off in his $300 stroller while I shopped at Ann Taylor again because I immediately fell back into my size 2’s.

This is the role that I invented for myself. NOT the role that destiny assigned to me.

Insert lightbulb here.

I realized at that moment, that you know what? No matter what happens, no matter how this plays out, whether Jared made it or not, this is the role that destiny assigned to me. No longer was this about ME, but this was about my life as Jared’s mother. And I stopped crying and I pulled up my bootstraps and I got to work. I got to work figuring out what I was going to do to be a part of the solution. “Destiny” or “God” or “The Fates” or whatever/whoever gave Jared to me because it is my destiny to be his mother. We were destined to be together. He was destined to change me and I was destined to change him.

So what does this have to do with autism? This blog is, after all, called “April walks with autism,” so I better stick to the point.

The point is, that I never would have realized in my wildest dreams that going through what I went through with Jared was given to me in order to prepare me to be Luke’s mom. Each challenge, each struggle, prepares you for what could be the greatest fight of your life.

I was a maniac when I was pregnant with Luke. In fact, I thought long and hard about not getting pregnant again because I didn’t want to put another baby through everything Jared went through. But in the end, we obviously decided to have another baby and I was a complete freak about getting ultrasounds, fetal echocardiograms, etc. I wanted to know exactly what I was up against.

Ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha

I cried for exactly one hour when “they” came out and told me something was “wrong” with Luke. And then I pulled up my bootstraps again and remembered….

The real test of a man is not how well he plays the role he has invented for himself, but how well he plays the role that destiny assigned to him.

This is the destiny that was assigned to me. Time to be a part of the solution.

I never thought I would have it in me to be the parent of a special needs child. But once you accept the fact that there are certain things you cannot change and embrace those things with open arms, you are a lot stronger than you give yourself credit for.

Some days are ugly and full of tears and sweat and blood and vomit and puke and poop and self doubt and screaming………. but…… it’s still your fight and it’s always your destiny.

I’m not much of a religious person, OK I’m not “any” of a religious person, but this……. It just speaks to me on so many levels.

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

For the record, Jared is 8 years old and growing strong. He had extensive testing just last week where docs looked at his heart via 3-D imaging and it looks GREAT.

And Luke? Well he’s a 5 year old with autism who loves to swim and run and jump and play and read books and sometimes scream and eat really particular things and have strange quirks, and not wear pants very often, and fixate on things and mostly laugh hysterically ………… but I’m pretty sure

that’s his destiny.

Smoke and mirrors....

2009-05-25T14:01:00.001-05:00

Special thanks and shout out to Andy and Leigh Gibbs for teaching me how to make my blog look good! =)

Sometimes, I'm just in the mood for a little JT. OK in reality, I'm ALWAYS in the mood for some JT. But today, I need to get my "sexy back" or in this case, my "A" game.

The thing about being a parent is that you need to have your "A" game on at all times. *Sigh* (I sigh a lot in my blogs, don't I?) I mean you never get a day off or a moment off or a minute to yourself ever again. Suddenly everyone is watching YOU waiting to see how YOU will react. Which is really fun when all you want to do is scream, or cry, or sob, or break down. But, you don't get to do that. Because if Mommy loses it, then EVERYONE is going to lose it, which............

only makes it WORSE for Mommy.

And the last thing we ever want to do, is make things worse for Mommy.

So Mommy puts on a brave face and smiles, even though sometimes she wants to die inside.

Sometimes I think this is the single hardest part about being a parent. Because we all know that suddenly we lose our identities to our children. You give birth, and from that moment forward you are known as, "Jared's Mom," or "Luke's Mom," and "April Schmidt" ceases to exist. Suddenly everything you do, everything you live for, every decision you make, every smile you fake, is for your kids.

And that's OK. Most of the time.

DO NOT misunderstand, 99% of the time, my smiles are real. I am one of those people who genuinely loves and ENJOYS my children. There is no place I would rather be than with them. However, there are days when you just wake up in a damn funk and you want to sit and pout about it. But I don't have that option. On the few occasions I have "lost it" in front of my kids, I can see the look on their faces, "Oh.MY.God. The Apocalypse is near!" and I scramble to make things right really fast.

Today is one of those days where the laundry is piled up to the ceiling, the entire house needs vacuuming, the flowers need watering, the garden needs weeding, the backpacks need to be emptied (I mean, school has been out for almost 5 days now), dinner needs cooking, bathrooms need bleaching, husbands need _______, floors need mopping, kids need loving, toenails need painting, camps need scheduling, parents need calling, etc etc etc etc etc etc. All of this and I woke up in a funk.

It's almost like being an actor, ALL THE TIME. No matter what phone call you just got, "You owe the IRS $10,000." you have to hang up the phone and put on that brave face for your kids. How about being in the checkout line at Target and one kid is screaming, the cell phone is ringing (and you can't find it), it's time to pay (can't find your debit card either), and the other one has just pooped and it actually fell OUT of his diaper and it is sitting in a neat pile on the floor.... your body tempurature just went up about 200 degrees and you're quite certain you have those really gross wet pit stains on your shirt and YOU have to pee yourself so you're really uncomfortable......... smile! How are you going to make this a "teaching moment?"

ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha

By the way, that target thing? It's a true story. Swear.

The thing is, those little eyes are on you ALL THE TIME and how we respond and react to everything~ the big things and sometimes, more importantly, the small things really does teach our children a lifetime of lessons.

In short, this is WHY being a mom is the hardest job you'll ever love.

And, it is the MOST important job you'll ever have.

Because one way or another, we find a way to pull it off. Every.single.time.

Well, almost.

One moment in time...

2009-05-20T08:26:00.000-05:00

And yes, I have Whitney Houston playing on my blog. Because I'm cheeky that way. No really, it's a joke.

So much can change in the course of one day.

Even one moment.

Today my bestest friend got on offer for representation. I’m not sure if that’s the right terminology but I do know that’s a really big deal. This is Myra’s dream coming true. She quit her job and everything she was doing and said, “that’s it, I’m going to write a book.” And write she did. Today that dream became a reality. I’m so thankful I got to be a part of this journey with her, one of the lucky few she let read even the really ugly early copies (according to her, not me, I always loved it). And today I got to be there when she got the news. It was a great moment. One that I will never forget. Funny how life can change so fast. Yesterday she was “someone who wrote a book,” and today is she is a breath away from, “author.”

When I was pregnant with both of my boys, my biggest fear was coming home from the hospital without a baby. I never gave much thought to things that could go wrong LATER. Especially as a first time mom my primary focus was getting the baby OUT and getting the baby HOME. So you bring home your little bundle of joy and the fun begins. Every little tiny breath your baby makes is the most exciting thing in your life. Every time your baby looks at you, laughs at you…the first smile…first step, first words, and so on.

But what if your baby never actually does any of those things? I mean, he looks fine from the outside. The doctor is telling you everything is ok and he’s a doctor so he has to be right, right? But why in your heart of hearts and gut of guts do you just know something is off? I mean you made it to one year and the baby is still breathing so that’s a good sign you’ve done something right? Isn’t it?

Here comes one of those moments.

I’ll never forget this as long as I live. As I think about it, it’s like I’m transported right back. As if in a movie, when the camera zooms way in really fast and zeroes in on the main character’s face ~ that’s me. Luke is about 16 months old….one night Jeff and I are sitting at the dining room table. He’s working on his laptop, I’m thumbing through a magazine. I stop at one of those “Dear Dr.” articles and start to read… “Dear Doctor, one of my friends suggested that my son has autism! I don’t know what to do!” And “Dear Doctor” writes back, “if you can answer yes to 3 of these 10 questions, then your child may have autism and you should see your health care professional immediately.”

I answered yes to all ten questions.

Does your child fail to respond to his or her name? Does your child avoid making eye contact with you? Does your child appear not to hear you? Does your child avoid being held or cuddled? Does your child seem to be unaware of others' feeling or emotions and prefer to play alone? Does your child perform repetitive movements, such as rocking? Does your child become bothered with small changes in their routine? Does your child appear to be unusually sensitive to their environment through light, sound and touch? Has your child developed specific routines that are easily identified? Does your child point to desired objects?

All of a sudden, our dreams changed.

I cried when they diagnosed Luke with “ECDD” (code for “we know something is wrong, we just don’t know what), But what needs to be understood is that I never, ever cried for me. I cried for him. I cried because I didn’t want life to be even harder than it already is for him. I cried because I thought, “He’ll never lead a normal life.” (ha ha) So I started to dream that Luke could have those things. I started to dream and fight for ways that we could actually make life easier for him. Now, instead of dreaming your child will someday go to Harvard or become a doctor, you dream that your child will speak. You dream that your child will look at you. “I’m his mother for f$%k’s sake, why doesn’t the child even LOOK AT ME?” (I actually said to the pediatrician at some point: I have the general feeling that Luke doesn’t care whether *I* live or die, as long as someone brings him a bottle.) Suddenly you dream that your child will be able to point at a desired object….when up until that moment you didn’t even realize that was something you SHOULD care about.

Suddenly, the really LITTLE things became big dreams.

Today was Luke’s last day of preschool. He spent 2 years at the early childhood program at Longview Elementary. I could write 100 pages about how much I love those women. He has one “teacher” (they are all teachers!), 2 aides, a speech pathologist, and an occupational therapist. Every single one of those women are like his mom away from mom. I owe them my life, they gave me my son back. Enough with the crying already!

My point is…. Today my dream came true, too. Today Luke accomplished a really huge goal. 3 years ago Luke’s therapist in Michigan told me that I was making a HUGE mistake sending Luke to school. That Luke would get “lost in the shuffle,” that he would end up in a corner playing alone. That we would lose all of the progress we had made up until that point. But sometimes, when you are reaching for a dream, you need to take a risk. You need to put yourself out there and take a chance. And we took a chance. We believed in Luke and he more than rose to the occasion. Even one year ago I would have NEVER said that Luke would be ready for kindergarten at this point. But guess what? He’s ready. What a difference a year can make. A day can make… a moment.

Does your child fail to respond to his or her name? NO! Does your child avoid making eye contact with you? NO, NO, NO! Does your child appear not to hear you? NO! Does your child avoid being held or cuddled? Not by me! Does your child seem to be unaware of others' feeling or emotions and prefer to play alone? Not on your life!!! Does your child perform repetitive movements, such as rocking? Nope! Does your child become bothered with small changes in their routine? Sometimes Does your child appear to be unusually sensitive to their environment through light, sound and touch? Once in awhile but we know how to manage it now (popcorn and icee = trip to target!) Has your child developed specific routines that are easily identified? Yep, and I have some too! Does your child point to desired objects? Please, that’s so 3 years ago!

Being at Luke’s party today, watching him play and interact and converse and look people in the eye and point and initiate and engage….. is truly a moment I will never ever forget. A life changing moment.

Phew! What a big day we ALL had! Congratulations Myra McEntire for taking a risk and achieving the dream. And kudos to you, Mr. Luke Schmidt ~ you're on your way!

Your dreams come true when you act to turn them into realities. Anonymous

Stand By Me

2009-05-14T05:16:00.000-05:00

Author’s note: I know, I know my other background was way cute but it took awhile to load and was sorta….busy.

I’ve been trying to make my blog somewhat witty, all the time “me,” and mostly, interesting to read. But when it’s 4:30 in the morning and I have a headache, it might just be ranting.

I think that was my idea of fair warning.

I can’t stop thinking of this woman I spoke with the other day, you know the one from my last post who wanted her son to hang with “normal” kids? Well, that was when the conversation started to get really interesting.

Disclaimer: names have been changed to protect the innocent. Or, not so innocent.

We’ll call the mom Susan and her son Billy for the sake of the story, OK?

I do a ton of work with Autism Speaks, mostly for the Walk Now for Autism. So, I was making phone calls to previous team members and trying to bring them back into the fold for this year. (I felt I needed to explain why I was even calling random people I don’t know) So I call Susan and she proceeds to vent a lot of stuff to me, and that’s fine. But then she goes into the whole story about how Billy is on the road to recovery and almost off the spectrum. Wow, that’s fabulous news! Then she makes the whole “normal” comment and and this point I’m trying to get off the phone asap.

Then the conversation turned. Again. I’m explaining to Susan that Autism Speaks does a lot of local work, that we bring resources in to communities, host family fun “Autism Safe” events, etc etc blah blah blah. And then she starts.

She starts to tell me that SHE doesn’t NEED that kind of support. Because, you know, Billy is almost recovered and all. “I don’t really want to hang out with other mothers whose children have moderate to severe autism, I can’t relate to that anymore.”

But wait!

“I feel like if I take Billy to these events where there are other children like this, I’m somehow rubbing it in their mother’s faces, making them feel worse about their situation because Billy is doing SO WELL. I know many families who do twice as much work as what we do with Billy and they are getting nowhere. I think I would actually feel bad, flaunting Billy around them.”

Insert stunned silence here.

“Thank you so very much for your time, I certainly respect your opinion and will take you off of our call list.”

OMFG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m going to tell you a dirty little secret ~ Luke is almost recovered too. In fact, I’ve had a few professionals tell me that they don’t think he has autism (another post for sure). Granted, that’s really easy to assess in a 15 minute window, (ha ha ha) but mama knows better. TRUST me, mama knows better. It ain’t over. It’s far from over! But I do realize that I am TRULY one of the lucky ones. Luke does VERY well. He’s verbal, he’s potty trained, and he’s pretty darn social. He doesn’t stim, he doesn’t spin wheels all day, he doesn’t bang his head against a wall. But he also doesn’t eat. And he doesn’t like transition. And he doesn’t answer questions very well. And he doesn’t “converse” like a 5 year old should. Etc etc etc. But at the end of the day, I know I am one of the lucky ones.

But it wasn’t always that way.

At 18 months old my son wouldn’t look at me. Did you hear me? My son would not look at me. Or his dad, or his brother….. eye contact people, it’s about the most basic form of communication. He wouldn’t do it.

He couldn’t pull a toy behind him. Did you year me? My son. Could not. Pull a toy. Behind him. For the record, I never would have thought this was a “testing point” or something he needed to be doing and we didn’t OWN any pull toys for him to be practicing on ~ however, he lacked the cognitive skill to pick up the string and know what to do with it.

For TWO. FULL. YEARS. I could not, WOULD NOT leave the house with Luke. REALLY. No grocery shopping, no trips to target, trying to avoid at all costs any and all outings that Luke had to attend. I mean really re-arranging my whole life so that Luke didn’t have to leave the house.

Really, I could go on for hours with this.

My point is this. I work tirelessly to raise awareness about autism. Really, I do. The work I do with Autism Speaks is a full time job. I founded a support group in my town. I write this blog. I make puzzle piece t-shirts and shoes and jewelry and note cards. I can’t stop. I cannot, WILL NOT rest until I know I have done everything in my power to spread the word, share, listen, hopefully throw in a laugh, and just….. be there.

Because what Susan doesn’t realize is that even though SHE doesn’t need those other mothers, they need her.

Duh.

Normal is as normal does

2009-05-11T22:49:00.000-05:00

The subject of "normal" has been coming up a lot in my life lately. Someone said to me awhile ago, "I'm really thankful that my kids are normal." Hmmmm. Doesn't take much to get my feathers ruffled but ...*sigh.* That's the mama bear in me. Today a woman with an autistic son on the road to recovery said to me, "I don't want Billy hanging around other children that aren't normal. He needs to see kids who are acting normal so he knows how to behave."

This is a family blog people. I can't even tell you what I was thinking after that one.

Then a few days ago, Jared asked me, "Mom, do you consider yourself normal?"

(Insert insane amounts of laughter here)

We proceeded to have a conversation about what "normal" means. He was referring to the fact that he wasn't "normal" because he was born with a congenital heart defect. And Luke isn't "normal" because he has autism. And Daddy isn't "normal" because he's REALLY smart and graduated with more than a 4.0. So, in Jared's logic, I'm the only, "normal" one in the family.

Again with the laughter!

I then reminded Jared that I had surgery on my bladder 9 times in 4 years and how in God's name is that normal?

"Oh yeah," he conceded. "You're not normal either!"

Phew! That was a close one.

"Well mom, what is normal then?"

Honestly, I think the sex question would have been easier to answer.

So we had a conversation about what normal means and at the end of it we came to the conclusion that normal is in the eye of the beholder. And what's normal to you may not be normal to me and really, "normal" is kind of a stupid word.

Anyone who has met me knows that I'm not all about "PC" terms but I gotta admit, I like when Luke is compared to "typically developing peers" rather than, "normal kids." Luke is compared to what kids his age are typically acting like, talking like, writing like, learning like. Rather than what "normal" kids are doing. I mean, can I get an AMEN to whoever figured that one out?

If "normal" means that at 5 years old Luke should have the "typical" language of a 5 year old and NOT a 3 year old, well, I'm ok with that. Because he has language at all.

If "normal" means that Luke should be able to go to school without needing an aide or supports, well that's OK. We pay taxes for a reason.

If "normal" means that Luke should be the same kid all day every day, day in and day out and never freak out when today something is his favorite and tomorrow it's so not, that's OK, we'll figure it out. It's a puzzle for crying out loud.

If "normal" means that Luke shouldn't be screaming when it's time to get shoes on and get in the car to go run errands.......so be it. I'll still take it. 2 years ago I couldn't leave the house with Luke at all.

If "normal" means that Luke can't say "please" and "thank you" every single time he has a request, then I don't want Luke to be normal. Because guess what? He does. Granted, he might be screaming, but by golly the pleases and the thank yous are in there.

If "normal" means that Luke can't say, "I'm so happy you're back" when I come home from work, then PLEASE keep your label.

If "normal" means that Luke can't laugh so hard I worry he'll stop breathing when he's jumping on the bed with Jared on Mother's Day morning, then by all means, we'll stay, "not normal."

Here's my favorite: If being "normal" means that Luke has to stop saying, "I'm going to get your booty!!!!!!!" and then chasing Jared around in a fit of laughter, I mean REALLY.........do I need to say it again?

What's normal to you and what's normal to me are very different things. Normal to me means that I never know what I'm going to get with Luke from one moment to the next. That's my normal and that's my reality. And I'm ok with it. I won't deny it took me awhile to become OK with it, but I am. Because he's my normal and I wouldn't have him any other way.

At the end of the day, it's just a word. Attach whatever meaning you'd like to it. But please don't compare my son to your "normal" son because I'm SO sure our definitions are very different.

And for the record.......with or without bladder surgery, I am soooooooo far from anybody's definition of normal.

Thankfully.

Good 'Nuf

2009-05-07T19:53:00.000-05:00

So.

Jenny Mc Carthy just signed a “big deal” with Oprah. A radio show, a tv show, her own line of dog food, a perfume, etc. Ok I’m kidding. Sort of.

I struggle with how I feel about all of this. As I’ve mentioned before, I give Jenny Mc all of the props in the world. She’s used her celebrity to bring autism to the forefront of the media. I can honestly say that Jenny is single-handedly responsible for waking up the eyes of millions of people to what is going on with autism. She put her balls out there ~ she took a huge risk in pissing people off with her anti/green-vaccine campaign. (How I feel about vaccines is a whole ‘nother post my friends)

I read Jenny’s first book on the recommendation of so many. I finished and was still hungry. As Simon Cowell so aptly said on AI this week, “it’s like having ice for lunch, you haven’t REALLY eaten anything.” Jenny talked about Evan and his struggles, but more in a “day of the life” type of deal. Kind of like……a blog. I didn’t actually gain anything from the book other than, “OK she’s been through it too.” What I did walk away thinking was that even though she claims to have re-mortgaged her house to pay for Evan’s expensive therapies ~ the bottom line is, she’s Jenny Mc Carthy and that name alone opens up a lot more doors than the name April Schmidt.

I recently read that Jenny built a classroom in her home so that Evan doesn’t have to ever really leave and take the risk of getting sick.

Now that’s realistic!

By the time her second book came out, which I did buy and never finished reading……Jenny seemed to fancy herself the expert on all things autism. The more articles I read of hers and the more interviews I saw the more I disliked Jenny. And here’s why.

Whether or not you are Jenny Mc Carthy or Angelina Jolie or Barack Obama or April Schmidt, you do the best you can. You do the best you can with the resources you have. If those resources only allow you to get your child 4 hours of ABA therapy a week or for that matter 1, you’re doing the best you can. The thing about Jenny is that she gets on her soap box and really gets quite um, “animated” when talking about the issues of vaccines and what not and tends to think her way is not just the best way, but the only way.

Jenny goes on and on about how Evan is “recovered.” And I believe her that he is. She doesn’t by any stretch try to pretend that their journey is over… HOWEVER ~ I can’t help but think that if Luke were able to get 40 hours of therapy per week, a nutritionist, a chef and a live in nanny he’d be fully “recovered” too.

But the REALITY is that I can’t give Luke those things. The Schmidts can’t afford 40 hours of ABA per week. I took on a part time job just so that we could afford 4. I won’t even start on the money we’ve spent on the GF/CF diet and all the supplements that go with it. I can’t built Luke a classroom in our house and so (perish the thought!) Luke goes to a public school where not only has he developed some amazing social and language skills, but he’s picked up (egads!) germs now and again, causing him to get sick (see previous post) and lose precious learning time. Sometimes I even (please don’t call the police) let Luke sit in front of the TV so that I can do crazy things like laundry, cooking, showering, or God forbid, spending time with my other child.

I’m not so sure Luke is really suffering.

My point is, we do the best we can with what we have. Is it good enough? I wonder all day every day if it is. I constantly ask myself if there’s more I can be doing, therapies I can try, more hours to give. And if I were able to, would it make a difference for Luke? Would I be able to call him “cured?”

Doesn’t matter. Because what I’m doing is ALL I can do. I can’t beat myself for not being Jenny Mc Carthy. What I have to offer has to be good enough because it’s all that I have to give.

And really? At the end of the day Jenny Mc Carthy is just a playboy bunny. And someone who used to get paid to make smart ass comments on MTV. And now she gets paid to talk about autism. Good for her. I think. I mean at least someone is talking about it, right? I guess you could say that’s….

Good enough.

Welcome to the puzzle

2009-05-02T09:29:00.000-05:00

For someone who never liked blogging to begin with, I find myself thinking about this blog and what I'm going to say next quite a bit more than I should. The problem is, I have SO MUCH to say on the topic of autism and our journey with it, that I could write a book. And it would be better than Jenny Mc Carthy's. Except she has those boobs that really help her market her, um....wares. But I digress, as usual. And don't get me wrong, I give Jenny Mc all the props in the world for bringing autism to the forefront of the media. I just don't like her books.

So I think today's topic will be just shaving a sliver of ice off the berg that is ~ feeling helpless when it comes to your child. ESPECIALLY but not limited to, your special needs child.

Just over a month ago, Luke was in the hospital with some WICKED flu. He could not even keep a tablespoon of water down. Until this time, Luke had never even thrown up in his life. So again, probably not something the typical parent gives a lot of thought to: "how will my child respond to the sheer act of throwing up?" "How can I even communicate the importance of my child trying to drink something?" "How will he tell me what's hurting?" But alas these are all thoughts we were facing. He cried when he threw up, and generally seemed really confused by what was going on. He refused to drink anything (more on that later) and all he would say is, "Ouchy boo boo" which was enough for me to know that if it hurt ANYWHERE, we needed to get it taken care of.

By day 3 of our flu adventure, Luke was walking around with a washcloth in his mouth and refused to speak or release the washcloth for any reason. Took me 2 more days to figure out why.

At about 2am on Wednesday morning of that week, I could not get Luke to stay conscious for anything. He had already been sleeping for 18 hours and I was freaked out. So after the hullaballoo and drama of getting Jared to Myra's house at 3am, I drove Luke to the closest hospital, which, for the record was NOT Vanderbilt. And don't forget, in all of this I had to pack a bag with every possible thing that Luke would ever want to eat/drink and any comfort item which might even potentially make him feel better. With a bag heavier than Luke (I'm not kidding), off we went.

Although everyone was extremely friendly, they were NOT helpful. Because Luke has autism, they didn't want to put an IV in his arm to get him rehydrated. I SWEAR. When the doctor left the room, the nurse very kindly explained to me that this (smaller) hospital was just not equipped to deal with special needs circumstances. Um, WHAT? That my friends, is a blog in and of itself. Maybe several posts, I'm not sure. They convinced me that he was "borderline" dehydrated, not quite close enough they felt they needed to force this issue (chickens!) and sent me home with phenergan suppositories (anti-nausea). WAIT! They didn't send me home with SQUAT! They gave me a prescription and kindly informed me that the 24 hour Walgreens attached to the hospital was no longer, "24." Keep in mind it's 5am. Now I get to drag my sick child BACK out later to get this thing filled. And then attempt to stick it in his butt.

Really?

To speed up the story, by Friday morning we were at Vanderbilt where Luke was admitted IMMEDIALEY for "severe dehydration" and promptly given multiple bags of IV fluid, antibiotics, anti-nausea drugs, and....morphine. By the time they checked his throat it was completely covered in white pus filled bumps (ewwwwwwwwww) and was starting to bleed. Back to the washcloth ~ the poor kid didn't want to swallow and he used the washcloth the aborb the saliva so he wouldn't have to. Now that's smart!

People ask me all the time: What is autism?
Autism is when your child can't or doesn't know or for some unknown reason doesn't want to communicate what's hurting him. Autism is when your child can't say "Mom, my throat hurts," and so he shoves a washcloth in his mouth and hopes that someone will eventually figure it out. Autism is when your child can't say, "I don't feel good," "I think I'm going to throw up," "My tummy hurts."

Autism is when you take your child to a hospital and they don't want to put an IV in him, even though it's what he really needs because they are afraid of how he will react.

Autism is when we thank God for hospitals like Vanderbilt Children's who not only didn't need any further explanation after "Luke has autism," but handled him with kid gloves from start to finish and made our time there as comfortable as possible. Autism is when you want to hug the nurses for understanding without saying a word.

So, I think we've covered the hopelessness issue right? Well when we returned from the hospital and Luke was once again jumping on the trampoline, I booked us a trip to Atlanta. Luke LOVES fish and we had been talking for awhile about taking the kids to the aquarium. So by golly, if I can't make you feel better when you REALLY need me to, then I'm going to make you happy when you already feel fine by taking you someplace really fun and cool. No really, that's the logic. It's kind of like feeling guilty. It's helplessness that bleeds into guilt because you feel like somewhere deep down inside you should have been able to figure this all out by Tuesday and not make the child suffer until Friday. So out of this need to somehow make it all right, we ended up having a pretty cool mini-vacation.

The trip itself poses some challenges but this post is long enough.

I feel like Luke had a sufficient amount of fun that it will block out his crappy week of being sick and going to the hospital twice~ so in that way, I have helped.

Our lesson for today in "What is autism?" is this:
Autism is when your child can't say, "My throat hurts so bad I can't even swallow." But when he CAN say, "Let's toast to brown drink" at World of Coke on his "make it all better" trip.

Welcome to the puzzle.

"The Facts of Life" ~ not just an 80's phenomenon

2009-04-21T18:03:00.000-05:00

*Sigh* Today has been one of those days where you just.... *sigh.*

It actually started off last night when I realized that I booked myself at two schools at the same time. Making and serving breakfast in my son Jared's third grade classroom and driving to the zoo with Luke's class at the same time. But wait, this blog is supposed to be about autism, not about how I've lost my mind. Are they related? =)

So after the massive hullabaloo to get everyone and everything where it needed to be this morning, I met Luke's class at the zoo. I will repreat this several times throughout my blogging career so I may as well start now. going to the zoo is something that parents of "typically developing children" (I could write 12 blogs about that statement alone) take for granted. However, when you are the parent of an autistic child, you never know what you're going to get.

The good news is, Luke did fabulously at the zoo even though I didn't dress him appropriatley and he said several times, "I want sunshine." (read: I'm cold mom!) Luke is normally TERRORIZED by the sight of animals. I can't say "scared," or even "upset," I must use the word TERRORIZED. Today he roamed all over the zoo with his pals making "appropriate" comments about the animals and getting excited about what he saw. His favorite were the "meerycats." I even got Luke to go to into the petting zoo and get dangerously close to some goats. During previous trips to the zoo, Luke would scream at the SIGHT of the petting zoo. Score one for Luke. Heck, he was so good we'll even give him two.

But then, because Luke has such fabulous eating habits (can I get an AMEN from the rest of the autie parents reading this?) ~ we left the zoo tired, hungry, and GROUCHY.

"I DON'T WANT TO WEAR MY BOOTS ANYMORE!"
"I WANT LITTLE CHICKEN RIGHT NOW!"
"I'M NOT GOING INSIDE! THAT'S NOT FAIR!"
"I WANT BROWN DRINK RIGHT NOW!"
"I'M GOING OUTSIDE TO RIDE MY BIKE RIGHT NOW!"
and my favorite....
"NO I AM *NOT* WEARING PANTS!"

*SIGH*

But guess what? One year ago... Luke didn't even posess that many words in his ENTIRE VOCABULARY. And 6 months ago, he may have had those words, known those words, but he sure as hell didn't use them. Didn't know how to use them? Didn't want to use them? Doesn't matter, he didn't. And for the record, I'll probably never know why anyway.

What does matter is, he's using them NOW.

So to sum it all up in a nice, neat package for you ~ "you take the good, you take the bad, you take them both, and there you have the facts of life!"

My first post

2009-04-18T14:17:00.000-05:00

My friend Myra thinks I should write a blog. Something about, "people might want to hear what you have to say about autism." Well, I'm not sure if that's true or not but I guess if there's a chance out there that even one person gets something out of our experience, I might as well give it a whirl.

The truth is, I never really liked the idea of blogging. It's like an online diary and who really cares about my or anyone else's thoughts? But then I became a bit of a closet reader. Not too many. Just a few that I follow. But the thing is, I found myself smiling when I read them. And hey, even one smile is worth a read, right?

And people DO care about autism. And if they don't, they SHOULD. We've heard the statistics a million times. 1 in 150. More than any other disease combined. Trust me, you know someone. And now you know me, which means you know Luke. Luke is my 5 year old son who was diagnosed right around 18 months old. This blog is going to share our journey~the ups, downs, ins and outs. The laughter, the tears, and the many other uh... pieces of the puzzle. Pun intended.