The one where I tell you I love you

Every once in a while I’m reminded by the good people around me. Sad to say it is often a result of hearing about some obnoxious gigantic boobs.

Like the Virginia State Delegate who is “saying that God punishes women who have had abortions by giving them disabled children.”

Like the Senate candidate putting autism in quotes during a speech.

Like the school allowing a 3rd grade boy on the autism spectrum to be stuffed into a duffle bag for misbehaving.

What is wrong with these people?!  They are horrible, heartless and leave me speechless.

BUT…. I’m not speechless today. Because I would like to meet oppression (yes, oppression) with joy.

Dear friends, family, acquaintances and internet lurkers… I really do love you. Maybe because you’re such a good-hearted souls who really try to love and support those around you, you’re not aware of the negative public side when it comes to special needs. But it is there.  I see a lot, because I always try to be in the know of what is going on in the Autism world. It is shocking.

Unfortunately, there will aways be negative, ignorant, hateful people in the world.

But that is so not you.

You help out by being an extra hand, an extra car, or an extra ear to listen.  You’re ready with a “Way to go!” on FB or a “I love him!” about my child.  You see who my child truly is and it makes me so happy. (because they are AWESOME kids)

You trust that I’m on my own journey on how to raise my kids, just as you are on a journey with yours. Mine may be more complicated in some areas, but you give me space, and time, and patience in figuring it all out.

You may have your opinions and theories about autism, but you engage me in talking about them. Not to lecture, but to learn… even if it’s just learning what I think.

And even people who have NO interest in Autism, no friends or family effected, but aren’t spewing negative presumptive dividing comments – I love you, too.

You make a difference in the Autism world just by being who you are. It may seem silly and insignificant to you, it’s not. It’s HUGE.

You are amazing!

You are needed in our lives and deep in our souls and we love you down to our toes for it.

Autism and Nemo

I’m reposting this from my old blog – this was written about a couple years ago now.

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It had been 2 months since our move from Austin, TX back to AZ and I felt like things were going great.

Collin was over the panicked I-hate-this-school-because-everything-is-different phase, Drew was already in the swing of things in his pre-k class at the same school, and Violet seemed to take everything in stride and land on her feet ready to go.

I had been living day to day with a good amount of peace.  The kids seemed happy and moving forward developmentally and my husband and I seemed to have a handle on our lives, too. It seemed all of our hard work was paying off. I think I was optimistic enough that I might have somehow floated up into the denial region.

Autism?  What autism?  It barely effects us!

Then one day when Drew got home from school, I decided to introduce him to “Finding Nemo.” He will LOVE it! I thought.

We waved goodbye to the bus driver and he walked inside the house with a big smile, like he always did. Taking off his backpack I said, “Drew, let’s watch a show about fishies!”

He said, “No!” and shook his head. I expected this since he’s usually hesitant about new things, but if I just keep moving forward, a lot of times he figures out it’s not so bad. So I ignored his no and said, “It’s a really good movie! I think you’re going to like it!” in a sing-song voice.

I turned the TV on and it came to the Finding Nemo DVD Menu; a serene, calm ocean view similar to this one…

…and I heard a yelp.

Thinking Drew must need help with something or was hurt, I turn around only to find him staring at the screen in complete panic. He had a look of “Fight or Flight” in his eyes, but was so afraid he was completely frozen. His feet glued to the floor.  His body half-turned away, but his eyes fixed on the TV like he couldn’t tear himself away.

The image of his eyes is forever engrained in my mind. Total panic.

My poor sweet boy.

“Oh, Drew… Honey, it’s okay… it’s just-”

and before I could say anything else or reach out to comfort him, he bolted. Shrieks of terror escaping from his lips every few seconds as he quickly made his escape down the hallway.

I sat for a minute and was forced to remember how random and irrational autism can sometimes be. This calm scene and music created complete anarchy in my sons mind, simply because it is new to him.  No matter how many days I think I must’ve found a great balance for everyone, I’m humbly reminded it has nothing to do with me at all.  You can take some proactive steps with therapies, sure, but there is no rhyme or reason. These moments are unavoidable.

I gathered my senses, took a deep breath and went to comfort Drew who was in his room peeking around the corner of his doorway.  His eyes looking for the TV, obviously hoping this new Nemo intruder would be gone.  He kept repeating, “No!” while shaking his head and then looking back to the screen.

After a bit of time, he calmed down and was playing in his room.  I knew this was one of those moments that he could learn from and despite his fear and my desire to take it away, I knew the movie needed to continue so he could see the outcome of it being okay… good… safe.

“Come here, watch this with me. It’s a good movie about fishies.”

“No.”

“It’s really good.  There are lots of fish… and turtles, too!”

“No.” while pushing his train through the tunnel.

“Okay.  Mommy and Violet are going to watch it and you can too if you change your mind.”

That seemed okay with him and he continued with his trains in his room.

Violet “watched” it and every once in awhile I would catch Drew inching himself down the hallway with a smirk on his face.  He hesitantly liked it but it had to be in his own time.  Toward the end of the movie, he was out at the couch actually smiling and enjoying it like I knew he would.

I hate that he has to experience this… that I can’t just sit down and watch a cute, little movie with him without him feeling complete panic because it’s unfamiliar.  I truly hate it.  But I am so proud that he slowly, carefully allowed himself to try something new. In his own time and in his own inching-down-the-hall way.

Date Night

Note to Self: Open Your Eyes

I’m moving some of my favorites from my old blog… so you may see some familiar posts.  I need to remind myself of this often.

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Since becoming a special needs parent I have definitely felt an extra dose of pressure from the world around me – no doubt about it.  Family may not be supportive or “get it”, once good friends may conveniently “move on”, strangers may glare and stare.  The world isn’t just a rough place to navigate for my kids, but for me!

Inside the house, life isn’t a piece of cake either.  Unfortunately, most mornings start with arguments and defiance, hyperactivity or crying from loud noises.  And that’s just coming from me! (insert laugh track here) I don’t intend to sound so doom-and-gloom but there is no way around it, this is a tough life we’re living!

At times I find myself internally toughening up. Just put your head down, Josie, and forge through with what needs to be done. That mindset can be helpful and I’m convinced even healthy at times, but if I linger there too long it causes me to forget that I have to look back up to find the beauty in life, too.

There is real, pure, honest-to-goodness beauty everywhere.

Sure there may be those friends who move on when the going gets rough, but the ones who stay are freaking amazing.  Most of the time I hold them close –letting me feel secure and supported. Sometimes I need to hold them out and see the light they bring to my life.  It is beautiful; they are beautiful.  They are unique and giving and gracious in their own right. I am so happy and lucky and blessed to have them in my life.

There are good people out there – people that don’t have to understand, but want to with all their might.  Maybe they don’t say the right thing, or maybe it’s unintentionally insensitive, but they are trying. They’re not frightened off by special needs and they’re still there, wanting and wishing the best for our kids.

When I’m in a nose-to-the-grindstone zone, I may notice that strangers and “the public” abound with jerks.  I notice it because it’s true, unfortunately, but also because they’re LOUD.  Sure a dab of special needs education will do them good and if it makes me feel better, by all means I might say something, but the “jerks” of the world many times are perfectly happy sitting where they sit – being jerks.  It’s what they do. Don’t waste too much energy on them. I try to remember these words:

When I’m truly trying to find beauty, I find the public angels.  They’re there, too, trust me. They are quietly going about their work, but they’re damn good at what they do.  I once was brought to tears from a simple genuine smile.  (It had been a bad day.) Another time, someone saw my hands were full with the kids and she let me go in front of her in line.  It is a simple moment, sure, but in this busy, fast world, it is a sacrifice. It is beautiful and so, so important.

Having a place, when I have the time or am feeling down, where I can click, read and feel understood, inspired, and supported from a few paragraphs is a thing of beauty. (Thank you, SPDNetwork!)

Note to Self:  Hunkering down accomplishes a lot! All I’m saying is just don’t forget to look up!

Moments

Have any great moments lately?

My most recent moment was on the 4th of July.

When Drew was 2, he did great. We were shocked!

Last year he was too overwhelmed by the day and we didn’t even try.

This year I got to sit outside with the impatient crowd, in 80 degree weather (in AZ, which is a miracle in itself) and cuddle with my little boy.  We pretended the fireworks were angry birds and he would occasionally squawk when a light would shoot into the sky before it would burst.

Collin sat nearby shouting out “Saturn!” whenever there was a firework with a ring around it….and Violet fought to stay awake by constantly trying to get out of Dave’s lap.  My sister and her family was there and I loved being able to just hang out with them.  It was so nice to get out and be part of things… and have everyone enjoy themselves!

The days are hard, but those moments… they hold me together and keep me moving forward with wonder and hope.