The air I breathe.

What Asperger's looks like to us.

This is part of an article I shared with "Autism Speaks - In Our Own Words" - a website/blog specifically for parents to share their own stories. I mentally noted segments of this from the time he was diagnosed - and this is what it looks like now.

Our Asperger’s – not just his.

What Asperger’s Syndrome looks like in OUR home:

It is lining up trains…and trucks…and dinosaurs…and anything else that can be lined up!

It is temper tantrums that other people cannot understand and never will.

It is the most loving little boy, throwing his arms around us a hundred times, saying, “I love you, Mommy!” and “I love you, Daddy!”

It is feeling blessed that he can tell us he loves us.

It is a lollipop in each hand, because everything must be in even amounts.

It is not knowing how to tell the teacher or his classmates “Hello” or “Goodbye” but being able to give and accept hugs.

It is learning his ABCs at 18 months old!

It is not relating to other moms most of the time and wondering what it would feel like if I could.

It is repeating things over and over because it makes sense to him.

It is an intense knowledge of the solar system - and wishing on stars at night.

It is struggling to cope on the soccer field but giving 200% every time.

It is enjoying the after-game snacks and it being all worth it!

It is playing with bubbles.

It is having trouble getting to sleep and not wanting to wake up in the morning.

It is saving his pennies and quarters “for the sick kids.”

It is having a hard time going to the library or the zoo but loving to jump on a trampoline or swim all summer long.

It is swimming underwater with no help at all.

It is one parent not being able to stand on the sideline at soccer games or practice because he is so attached.

It is watching from the fence and bursting with pride anyway.

It is pronouncing “Quetzalcoatlus” better than his parents.

It is exhausted parents who rarely get a break.

It is having so much devotion to their child that they don’t ask for a break.

It is having so much love for their child that they don’t need a break.

It is splashing through every rain puddle.

It is chewing on shirts or blankets because it is calming.

It is a fear of sudden, loud noises because an ordinary noise can be intense.

It is learning to whistle and being very good at it.

It is reliance on routine and having a meltdown when it changes.

It is throwing grass on another kid’s head as a way of saying, “I want to play.”

It is getting so overly excited when a grandparent comes to visit but sometimes not knowing what to say.

It is mastering a computer by the age of 4.

It is Daddy feeling jealous and proud of how skilled his 4 year old son really IS with computers.

It is eating an ice cream cone everyday if he could.

It is a constant need to be snuggled and his parents embracing every second of it.

It is saying “please” and “thank you” more than we could have ever hoped.

It is a rude glance from across the restaurant; it is our son’s giggle that makes us not care.

It is strawberry picking – but mostly just eating!

It is walking on tiptoes because it feels good.

It is not enjoying birthday parties because of all the noise and people.

It is someone telling you that your child is misbehaved or just being a kid. It is you knowing they are wrong.

It is you knowing your child better than anyone else.

It is growing accustomed to leaving events early because he can only handle so much.

It is being amazed with Walt Disney World and riding the same ride over and over and over.

It is tripping over things that anyone else would walk around.

It is being prepared at all times for any potential trigger that will cause a meltdown. It is being exhausted from doing this. It is doing it anyway.

It is helping Mommy in the garden.

It is refusing to color because holding a crayon is difficult.

It is trying to be anything that flies.

It is taking a two hour bath…just because it’s fun!

It is two parents hanging onto each other as tight as they can because to let go is not possible.

It is our beautiful little boy right at the center of it all.

Space Cowboy

Little man can't decide what he wants to be. Well, I guess that's not entirely true. In the last couple of weeks, we've had the following costume requests:

Bat (not Batman...just a bat)

Astronaut Bat (this combines his desire to be an astronaut when he grows up with his Halloween costume idea)

and now, as of yesterday...

Indiana Jones. The fact that Indiana Jones requires a whip as part of the costume just sent it right up to the #1 spot on his list. I can see potential problems with him having a whip in his hand.


*Take note that the Indiana Jones costume was inspired by trying on his "Western Day" costume for school. He decided to lose the bandana and make himself Indiana Jones with just the hat.

4 years ago...

Take it in.

This “In Their Own Words” is by Dorie Deebold, a mother of two children, one who has autism.

Our three-year-old son Pierce has autism – and we try our best to plan routine family outings for him and his older sister that we will all enjoy.

As is typical in any family, there are good outings and not-so-successful ones. For me and my husband who are relatively new to this strange new world, it is increasingly difficult to determine what outings will be a great success, and which may prove difficult for Pierce to navigate.

Before school started this year, we wanted to take a trip to Sesame Place. Knowing how Pierce and his older sister loved the Sesame Street characters, and armed with the confidence that Pierce had experienced water parks this summer with success, we were all excited for a fun day. However, this particular outing would prove to not be one of Pierce’s best. Something about the venue did not work with Pierce’s sensory system on this date, and it was a continuous struggle as we worked through the day of meltdowns, flopping on the ground and the consistent screeching of “We. GO. HOOOOOOOMMMMMMME!!”

As difficult as it was, we were determined to stay and allow Pierce’s sister to enjoy the Park.

Late afternoon came; while Dad and sister were adventuring on rides, I tried to coax Pierce into his bathing suit to try a small water park – which generally he would love. But the sand on his feet, the swim diaper, the direction we chose to walk there – everything seemed to be sending him into sensory overload. It was all too apparent that he could not adjust to this environment today.

I found myself questioning again on this afternoon (knowing full well how non-productive this line of thought can be): Why? Why, why, WHY can’t he tell me? Why can’t he tell me why this day, this place, this particular routine was so hurtful. What was it? The music? We’d been to a festival with bands and he danced the day away just weeks ago. The crowds? It was no more crowded than the boardwalk was last weekend. This mystery of why. Times like these, I desperately wished to get in his mind to see the world from his eyes, to try to unlock this puzzle.

So I retrieved a sobbing Pierce from his curled-up position and wrapped him tightly in a towel. We found a lounge chair in a quiet area by the “Mini Tidal Wave Pool” and both relaxed. I sat there whispering to Pierce how much I loved him, and how proud I was of him for all the work he’s done. Sitting there on a beautiful September day, watching all of the children play, I closed my eyes and felt us both relax from the high anxiety of the day. And we slept.

When we both woke up, Pierce looked up – dazed and tired – and smiled the first smile of the day.

“Pierce, do you think we should head home now?”

“Okay, Mommy?”

And off we went to find Dad and his sister.

Good days and difficult days – I reminded myself. And we can’t appreciate the one without the other.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones.

Written just for me.

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,

Jess

http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

My Therapy for today :)