OOCH

Ooch~ Sounds like something you say when you stub your toe  or bite your tongue doesn't it? Well, while it may be true that something needs to be muttered when you find the chair leg with your foot in the middle of the night, those words aren't what I'm talking about

OOCH is a performer like I have never seen before. Sam.loves.him.

When I say Sammy loves him, I mean it in the way that most people love chocolate or potato chips or chocolate covered potato chips (*drool*). Can you live without those items...yes , but who wants to?? Life is just more all around fun with them in it. Sam has decided that Ooch is his very best friend and has been the only topic of conversation since seeing him this past Saturday at the Wood School BBQ.

I can't really blame him though. Ooch is pretty nifty. He has hoola-hoops and yo-yo tricks and plays great music and he dances. This guy has charisma coming out his ears! He does stuff with a yo-yo that just amaze Sammy.  There are some studies that show kids on the spectrum benefit from yo yo play. I don't know if it's the spinning motion or what, but really who cares. If it makes my boy happy how on Earth can I complain.
Here is an Ooch video for you. check out his skills!

So often it's hard for Sam to enjoy things out of the house. I don't usually take him to a lot of the school events since it's loud and chaotic. We almost didn't go to the BBQ but last minute figured we would chance it. It was a rocky start and an even rockier finish - but what happened in the middle made it all worth it.

We found ourselves on the playground in the rain after a near miss meltdown early into lunch. Sammy couldn't take the noise and the smell and the people and so we went outside to run. Run he did , around and around and around. He did finally calm enough to go back in and finish eating. Then Ooch came on.

At first Sammy stood in the back corner of the room just watching the freeze dance game that Ooch played with everyone. I asked  Thing3 to dance with me and he did. Before I knew it he was off in the crowd dancing all on his own. At one point though I did have to stop him from hugging some kids that he didn't really know. He watched everything Ooch did with intense focus, but the real magic happened after. Sam went over and talked to Ooch. Yes Really. He went over and engaged with him. Not just the everyday "I like your dog" or "I am a secret super hero" conversation started but actually went over and talked.

Now I am sure Ooch had no idea what a big deal this was, but I did. Ooch's manager/publicist/agent came over to tell me about it. Denise is total awesomeness as well and she gave me a bunch of info that is so going to help Thing3.

So often we forget about the daily impact on these kids by the things around them. Ooch knows he can make an impact, and does. His personality and attitude are amazing. Not once did he ever seem bothered or bugged by the kids. Not even when the show was over and a few kids (read Sammy and Nate) took out the hoola-hoops again. Sammy had 2 of them and rather than take them away Ooch stood by Sammy. He told Sam "Show me what you got" and Sam spun the hoops around and even kept them up for a little bit. Ooch  applauded and complimented Sammy. Sam was GLOWING and talked about it all the way home. Since Saturday he has mentioned it 5 bazillion times! "Hey mom, remember when Ooch let me do the hoola-hoops and I kept them going? He's my best friend."

I know this is Ooch's job and he is nice to all the kids. He may be this way with every kid, but every kid is not my Sammy. To see the smile on my boy's face, to see him really happy... made the entire weekend drama worth it.
So Thank You OOCH for being so awesome. You really made Sam's Day

Ooch with Grace,Sam and Nate

Our hike to Aggie

We ventured out this weekend with the Dog and the children. Tyler had a wrestling clinic Saturday so we all went to bring him up to Bristol Aggie in Dighton. We walked everywhere and checked out all the animals. chance met cows, horses, and piglets. He did wonderfully. Sammy ran and ran and ran. He rolled down the hill by the baseball field. Sam, Nate, and AJ rolled and rolled. AJ may or may not have actually gotten dizzy this time.

We met a beautiful horse that was huge and very calm. He stood there and let Chance come to him and say hello. He bent over and nuzzled Sammy. We really enjoyed the walk. The boys fed the cows and the horse grass. They ran all over the place and picked buttercups.

The wrestling program had free watermelon and so the boys (and girl) enjoyed some. Even Chance had some watermelon.  We got in the van and headed home to prepare for AJ's party that night. It really was a wonderful afternoon!

In This Moment

Today we went to do our taxes and brought Sammy, Nate and Grace with us. Tyler and AJ were at work. The boys did well and so I was really pleased. The news was good as far as the taxes went so we decided to go for a treat. I needed to go to the walkin because my hand is really hurting.  I have it in a brace right now and for the last 4 weeks I have been unable to move it off and on. I can barely hold my phone most days lately. Well, the walk in was closed. We had told the boys we would take them for lunch after the doctor visit, but now there was no doctor to visit. We went to the bookstore and each child chose a book. They played in the castle and they just really enjoyed it.

Sammy struggles to read and even though he can he hates to do it. I was hoping that by finding him a book he liked he would want to read. He chose one (the Avengers super hero series)and we were on our way. 

As Daniel paid for the books Sam wandered and picked up a book about guns. It was a very technical book with diagrams and notes. He was awestruck and sat looking at each label and piece of the guns written. It probably wasn't a good idea to sit and let him read it, given how angry he can be. For that moment, he was just Sammy, with an interest in something that he wanted to see. I didn't want to make him obsess over it (and he likely would have, if I hadn't let him look). If it were any of my other children I would have pulled it open, sat beside them and checked it out. In my head guns don't always equal violence.It doesn't always have to be a bad thing. I would never own one simply because with a child like Sammy I couldn't guarantee it was safe. So I pulled open, sat beside him, and we read about the different calibers,types,makes and materials of all the weapons. I was bored but Sammy enjoyed it.

We took them for lunch and Sammy was awesome. Nate was the cutest little thing, ever! and Grace, well she is just all kinds of awesome! 

It was time to pick up the big kids and so we went. Tyler got in the car and Sammy told him "We had so much fun, we went to the store,we got booooks,we played in a castle and we got treats.We went out for lunch!" He had fun and it was worth working hard to stay in the moment. Too often I get stuck in the moments of sad and gloom because of the changes in our world. I get sad because things are just so different sometimes. I look ahead  and around and I miss the stuff right now. I miss it too often because of the fear and anxiety of the world around me and how things might happen. Today, I lived in the moment, where the good stuff is. I didn't miss it and that makes me smile

Not just a Number

The numbers don't really matter to me. i know that must sound horrible. I don't care if one in every 5 or one in every 500000 are affected by it. I just don't...because even one in a million shouldn't happen. I don't know what the current numbers are, I don't care. those numbers scare the crap out of me. Those numbers don't matter... because in my house those numbers are amazing kids!

They are NOT another statistic to make a point. They are NOT a disability, or a cause, or a puzzle. They are my babies.You can't pick them out of a line up. They don 't have a sign flashing above their head. they are simply my boys.

These are both faces of autism. Both amazing , loving, incredible, wonderful boys are on the spectrum ...somewhere

My boys are not just a number. While I may light it up blue at my house, please understand, everyday here is autism awareness day. We live it, we struggle through it. We drown in it and we rise with it. It is in every breath we take because it has always been part of who we are, who we were, and even who we will be someday. It changes the world inside our heads to make us fight a little harder, to love a little deeper, and smile a little brighter. My life and love of my children doesn't change simply because they are part of a statistic. they are not just a number, they too are the face of autism.

So absolutely light it up blue, donate,walk,work and love but know in the long run ; the numbers will never matter... the people do

You Just Don't Know

You don't know what you don't know.

That sentence always bugged me. It's true, yes, but it sucks. Sometimes ignorance is really bliss.

Watching Grace grow and develop has opened my eyes to a lot of things. Scary dark unhappy things and tons of super shiny sparkly sort of things.

Last night at the table she was covering her eyes with her hands, giggling and playing peek-a-boo. The look on her face of sheer joy and excitement made me so happy I could barely contain myself. There was something else there, a look, a presence. She looked over to her brothers with anticipation and a glint of "Am I wonderful? Is this right? Does this make you happy?" I am probably reading far too much into this and it was simply just Grace being silly, but something occurred to me in that moment.

 Sammy never did any of this.

I am going to let that sentence hang for a moment all by itself. That moment's realization came like a punch in the stomach. It literally sucked the wind from me. I never noticed if Nate did it because I was just too busy slaying dragons. I was too busy fighting battles I couldn't win and I missed it with Nate. I missed a lot with Tyler and AJ too. I was in a terrible place back then and busy simply fighting for my life and sanity. It's hard to see the sparkle when there isn't any sunlight. I missed so much, even though I was right there.

I was standing.right.there.

I won't miss it this time. I drink this girl in like a cool glass of water on a hot summer day. I watch her and smell her and breath her in. Her breath smells of ice cream. How amazing is that? She smells like ice cream! She smiles and claps and looks for approval. She stands and calls my name. She favors me. She wants to be near me, fingers entwined in my hair and her thumb in her mouth. Oh that thumb, she loves it, it is her best friend. She has opened my eyes to all that is and I am grateful. I am watching around me for things I may never have noticed. I am delighting in simple things I didn't even know I was missing. Because I didn't know,what I didn't know.

I watched Sammy last night though those same glasses I watch Gracie through.  He was sitting on the couch in his buzz lightyear pajamas that are a year too short. They are comfy and he likes that they don't touch his ankles. He wears no shirt, and his soft fluffy head is a mess of hair going every which way. I walk over to breath him in for just a moment before leaving for work. I kiss his feather soft hair and whisper that I love him. He looks up and tells me he hates is homework and all I can do is smile. That is Sammy, uniquely him in the lilt and cadence of his voice. I smell him again. Sammy also has a scent all his own, it's always the same, even after a bath. He looks up, hooks an arm around my neck and says "I love you mommy...like a banana" and I know, he means it. He smiles his Sammy smile, with his hanging loose front tooth and big blueberry eyes. He smells my hair and nuzzles my cheek. He lets go and just like that "POOF" he's back in his world with his pencil spinning on his fingers.
If I hadn't taken that time to stop and watch him. to absorb him. I would have missed that.

But I wouldn't know, what I don't know...

The Mistakes I've Made

We all have those moments when we think ..Ughh why did I go there?

That moment started my day. I sat there today thinking about when Sammy was born. The feelings and emotions I had. The feeling that we were going to loose him even though nothing was wrong with him. The frantic checks on him every time he fell asleep. then came the crying.The screaming. the loss of words.The loss of eye contact. The loss of him. He wasn't present anymore. he wouldn't let me hold him. I couldn't comfort him. I was something that made his world just as miserable as shoes and socks and pants.

The journey of the fight back to this place we are at. The clawing and ripping against the mountainside to get back to where we could feel ok. The fight back to where we are now. It might not be everyone's idea of normal but it by far better than watching your young boy be tormented by demons you can't see.

Why did I spend energy looking back? It's frustrating and overwhelming because in ever step forward I see so much we have missed. We work hard to just be. To just love him. we do that we just love him for being Sammy. It has to be good enough. After all what do any of us have to offer but who we are? And who he is  is AWESOME

Testing a Hypothesis

Sammy can't eat candy but he loves trick or treating. I always struggles with what we to do with all the candy he gets. This year more than half of it disappeared before I could really worry about that (I think the teens took it to school). However I was smart and did pull out a few pieces for science experiments. Last year we used a bunch of the yucky candy and tested all sorts of things with it. This year, it was the first thing Sammy asked to do. So he set up an experiment 3 glasses of hot water, 3 cold, 2 twizzlers, 2 now and laters, two gob stoppers and 2 gumballs.

Right-Cold                                Left-Hot    

Here is what he learned.

Now and Later - In hot water melts in 5 minutes, in cold it takes over an hour. they make the water cloudy colored and foamy.

Twizzler - Never melt or dissolve no matter what you do. they do end up with a paste like covering. the water color does not change.

Gumballs - loose their covering but never loose the shape, they dont even get softer with just water. change the water (along with the gobstoppers in the same glass but do not change the clarity or consistency)

Gobstopper - Melt in about and hour in hot water and 3 in cold.
 We really had such a great time doing this together. I am almost tempted to go to the store and buy more candy to try different things

To be fulfilled

I hope he feels some type of satisfaction as an adult. That he can make his own choices. That he feels heard and loved and cherished. I had intended to write a new post for each thing I listed but the more I thought on it the more I realised that they cannot really be separated. I just want Sammy to grow up and be Sammy. I want him to know how amazing he is. I can't quite find the words to explain what I am feeling. So I was sitting quietly in prayer this morning and this song came to mind. this really does say it all...