Monday, July 30, 2012

Mud Pies and Mondays

We have started filling barrels with rain water for the garden. The kids love watching the barrels fill. They really love grabbing out buckets to feed the plants a drink. Sammy knocked it over. 30gallons of water down the driveway. It resulted in a huge puddle of mud. Big enough for Sam and Nate to lay down in it. They covered themselves in it. Nate filled his pockets with mud ,so that it ran down his legs. They doused themselves in it and played so happily   He had the neighbor girl cover his head and back in it. They filled buckets with it. I soaped them up and hosed them down to clean them off. They giggled and laughed and enjoyed every single minute. Then after they dried off, Nate  went back into the mud once more.. I remember mud as a kid. The soft silty feel of  it in your fingers, on your hands. The squish of the warm summer mud between your toes. The smell of the earth and the clean. Dirt has always smelled clean to me. I may or may not have even put my own feet into the mud with them.

It brought me back to a childhood spend in my grandparents back yard. Digging in the garden and pulling up rocks. Playing with earth worms and centipedes beneath the willow. It reminded me of my grandmother bringing out giant pots of boiling water to add to the pool so we wouldn't catch cold. It brought me back to the melted ice cream running down my arm, my aunt Angie bringing me milkshakes from across the street and Vavoo teaching us how to pop the grapes in our mouths without the skin. It brought me back to a simple time when time didn't exist and all that mattered was how much sunlight was left to the day. Authentic Childhood. It's what I want for my children. I want them to think back and feel the sun on their face and remember the smell of the air. I want them to know they were lucky to enjoy the sunshine. That boys can make pretend soup and girls can play in the mud. I want them to know it's ok to get dirty and have fun and climb fences. I want them to remember their childhood with passion and rainbows.I want them to look back and remember happy sunlit afternoons,warm starry nights, and every single moment in between.  

I don't want them to loose the happiness they create because they grow up. I don't want them to forget how amazing it all can be. Please Lord help us all to remember what fun it can be to simply make mud pies.

Thursday, July 26, 2012

Chasing Sanity

Sometimes the emotional roller coaster of my life gets to me. We seem to be on a down hill slalom here. It's always hard to watch Sam fall apart bit by bit. It's even harder to be feeling out of sorts myself when this starts. I kind of feel like I'm trying to out together a tower and the Earth underneath just keeps shaking. I can't seem to get my footing. It's hard feeling like I am in the thick of things I cannot control.

It's days like today, when Sammy wakes me with anxiety and stress, that I try to remember the happy. I try so hard to find that smiling boy with the fluffy head. I look back at pictures from so very long ago, of family vacations, and I long for the happy.

Part of me struggles with the reality that I live with. I wouldn't change it for the world, but it doesn't mean it's easy. There are so many out there with bigger and heavier crosses to carry. I feel silly complaining. I know it could be worse, but right now this is what I know. Right now this is hard. Right now I wish I could go back.

Back where? I'm not entirely sure. I have always struggled with being depressed. I can't remember a time when I didn't struggle with it. From the melodramatic kid to the sullen teen to the tearful mother, It never really changed. I never changed

I wonder if my boy will be the same. I wonder if he will remember his childhood as sad and gray. I wonder if he feels as lost as I did at his age.

That is harder to think about than anything we may be dealing with right now.

So Today I need happy and I need a smile.

Tuesday, July 24, 2012

Missing the Point

 Joe Scarborough speculated on his MSNBC Morning Joe program that James Holmes, the man who just killed so many people in Colorado, may be on the spectrum.
"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

He did offer some sort of half-hearted , ill prepared statement that was some kind of attempt at a back peddle. It was not an apology.

“During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.

The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently …”

I am having a hard time wrapping my head this. How does a parent of a child on the spectrum draw parallels between an obvious sociopath and our children!

Part of me though, gets where he is coming from. You see , Sammy has some very violent tendencies.  We have worked hard to overcome them. However, I don't think they are because he is autistic. I am sure the frustration level is exacerbated by the things that go along with autism.   I wonder if Mr. Scarborough is dealing with some issues in his own heart because of his child's issues.

I don't want people to be afraid of my son. I don't want people think that he is frightening or dangerous. I don't want people thinking that my life with Sammy is such an ugly burden that I would rather not be living it.

I want people to know there is light and sunshine here, right beside the hurdles. I want people to understand that life doesn't end because you get a diagnosis. I want people to know, to really KNOW, that having a child on the spectrum DOES NOT mean they will be isolated.

 I want everyone to see Sammy

The boy who loves to dance. The boy who loves to sing. The boy who has love,empathy, and understanding of those smaller than him. The boy who can make me smile so hard that I cry. The boy who kisses my belly, knowing the baby is there. The boy who reaches out, makes friends slowly. The boy everyone seems to like. I want them to see HOPE. I want them to see LOVE. I NEED THEM TO SEE A BOY... not a spectrum, not a diagnosis, not any of those things. Every part of him is uniquely who he is. nothing less, nothing more.

I won't crucify Mr. Scarborough for his careless remarks. I do however feel sad that his son may have heard his words, comparing him to the man who killed people in a movie theater. I do hope his son can forgive him for telling the world he is a "tremendous burden". I do hope if nothing else, that people will understand that autism can't hurt you, but words can.

If you need more information to understand why words like this are dangerous , you can check out these links...


Also there is a petition asking Mr.Scarborough to retract his statement HERE that was started by Rachel Cohen-Rottenberg

Thursday, July 19, 2012

To You

To the woman outside watching my son screaming,

How this family must have looked to you. This gorgeous little blonde child screaming as though I were beating him with hot pokers. You stood there watching us, and I think you may have forgotten to close your mouth. A few years ago I would have been offended and upset. I would have given in to the tirade just to make it stop, because I didn't want yet another person to judge me.I would have gotten in the car and cried until I couldn't catch my breath.

 Instead I looked up at you and smiled. I asked you if you wanted to come and help. I guess I am still slightly passive aggressive. I was always taught it isn't polite to stare.You couldn't decide if I was seriously asking for help. I am almost certain someone called the police as well, after hearing my son screaming. The officers here know us. they know Sam. They know the deal. They drove by, smiled and waved, and kept going. I don't know if you are the one who called, or if it was someone else sitting there watching.

In case your wondering. We did finally get him pealed off the hood of the car. We did finally get him buckled. We did get him to the party. He had a fantastic time.

Wednesday, July 18, 2012

Snuggle Time

I cuddled up with you today , My sweet fluffy headed child. Your head heavy on me as we lay together on the couch. It's so hot here. The only room in the house with the air conditioning on in this one. You came in to share my space, to be here. At first as I snuggled you I thought you were joining me in my world. Spending time here, instead of there. As i watched your fingers flit through my hair and over my face, I realized that You were inviting me to join you there. In your world.

The world that finds rainbows in oil slicks, and sunshine in lemon. The world that makes music out of wind and rain. The sounds and the textures that we are all far to busy to see. You wanted me with you, and I happily followed.

It's still incredibly warm with your body beside mine as you whispered in my ear "You're the bestest mommy ever"

And in that moment, a split second really. Our worlds met in the middle. My sweet fluffy headed boy, I promise to take more time to find that place that makes sense to both of us. Because you are amazing. Because you are loved. Because you . are. mine.

Friday, July 13, 2012

This Moment

Just one beautiful moment. One sweet moment I don't want to forget. Linking up with Soule Mama today in her delicious link of . One moment, no words.

Thursday, July 12, 2012

The Dentist

This past weekend it was a dental day for Sam and Nate.
Nate has a few cavities and Sam had one. We fixed the one Sammy had and 2 of the littlest ones of Nate's.
We go to Perfect Smiles and we see the pediatric dentist there. He is fabulous with kids like Sam and even with busy kids like Nate. Really if your looking for a great local pedi dentist give them a call. Tell them I sent you

Sammy had a rather large break in his tooth and as a result he was in a little pain. The dentist did an awesome job with him. It was fast so there wasn't any chance for a meltdown. He reached out for Dan's hand at one point because the drill made him nervous. Mostly he just watched cartoons.

Nate had a few more cavities. Unfortunately he has my dimpled teeth and inside those dimples were little itty bitty cavities. He has two more between his very crowded back teeth as well that we will address one at a time. Those take a little more work.

They both did fantastically well.

Wednesday, July 11, 2012

Level II Graduate


 It's official Chance has graduated from obedience school. It's funny how much easier a dog he is. he is so calm and sweet. He is a joy to spend time with. We love that dog. He helps Sammy so much.

The bone that had been the core of the problem the day Grace was hurt has been sitting in out pantry, wrapped and waiting. We brought it out to show him and see if there was still possessiveness. He sniffed it and refused to even take it. I have brought it out a few times since and still, he doesn't want it.

We wont ever give him a rawhide like that again. They aren't good for dogs or my heart... just in case.

We have noticed when the baby is sleeping in her car seat, Chance wants to be where he can see her. If I move her, he moves. They aren't ever alone and he is never close enough for me to worry. He watches her though. It's very sweet.

I don't know this would have had such a happy ending if it weren't for Rick of South Coast Canines. We would have likely put the dog down. I am so glad we didn't. If your dog has some quirky behaviors or even just pulls on the leash. you really should give Rick a call. It's worth it.

A well behaved dog is so much easier to enjoy.

Tuesday, July 10, 2012

Magical Moments

We don't venture out often with Sammy to traditional places. We go when it's quiet, empty, and safe. That way when (not if) he melts down we can get out fast. We always have an escape plan.
When you have a kid like Sam , sometimes military tactics are necessary!

We dropped Tyler off at BU for 12 days of wrestling camp. The ride up and back was a little rough for Sammy since sitting still is NEVER his forte. We all survived it. We were coming over the bridge to our house and Daniel mentioned the carnival on the other side. I cursed under my breath. My darling husband wasn't thinking that Sammy had probably already had more than enough stimulation for the day. I wasn't happy, the question "how many blocks did I earn" had already begun being asked repetitively.
If we said no to the carnival, there would be a meltdown.
If we said yes to the carnival, there would be a meltdown.
There was no winning this.
So... we went to the carnival.

I prayed so hard that it would be ok. The last time we attempted anything of the sort it started with spinning pumpkins but ended with having to restrain him in the back of the pavilion as he tried to flip the table to get away from all the people.
I just couldn't take a repeat. 

Then the magic happened. 
There was almost no one there, and Sam took a minute to gather it all in. He got flappy for a bit and I was prepared to leave. Then he hugged me and told me I was the best mom ever. He tuned in to me, the world around him. For the first time in as long as I can really remember he was 100% present. He engaged. He went on rides. He loved the Ferris Wheel and the Polar Express. It was such sheer joy just watching him enjoy the fair. He asked to buy a water bottle. That was the best 3$ water bottle we have ever bought. We walked home the two blocks. We played on the cannons. We sang and we ran.
We snuggled and watched a movie.

And just like that, the next morning, he was gone. Disengaged and moody.
It didn't matter because now I have that wonderfully amazing night in my head. I know it CAN happen so there is hope it will happen again. What a blessed night we had,truly magical.

Monday, July 9, 2012


We were given free tickets to the circus and so we went. I kept my expectations as low as possible. I had my escape plan just in case. I figured it would end badly.

It didn't. It was really awesome actually. Sammy wasn't super thrilled but Nate and Grace LOVED it. Sammy did enjoy the foot juggling and has tried to imitate it a few times now. He wasn't really there with us, he was just kind of there. It's ok, any outing without a meltdown is a win in my book.

The kids had their first cotton candy. It was color free and flavor free. Just plain old spun sugar! SCORE!
Sammy enjoyed that. Nate did too of course. Grace did not love it. They rolled down the hill at intermission and played on the playground after.
We went home and all was well. Not a total win but it shows there is some hope yet.

Friday, July 6, 2012

Dear 50cent

Apparently 50cent decided that autistic is the new R-word. Someone insulted him on twitter and he thought a valid comeback was "I've seen your picture fool,you look autistic" 

Dear 50cent,
How dare you. As a man whose name is a number and grammatically incorrect you have got some nerve. You as a celebrity have so much power. YOU have an ability to change the world in ways that parents like me could never fathom. What I would give for an audience the size of yours to listen to what I have to say about how wonderful my son with autism is. Instead you took that power and you abused it. You took innocent children like my son and made them a joke. 
I am sure it wasn't your intention to piss off an entire community of people who spend every day fighting against this kind of crap you put out there. I am sure it wasn't your intention to look like an absolute fool. But you did. So before you start throwing around autistic as the new insult, I invite you to spend a day in our life. One day, of meltdowns and tears. Not just his but mine as well. I invite you to come and sit through dinner here and see what we live with. Before you dare use that phrase, understand it. I DARE you. Or are you too afraid to see the truth behind the nasty words you used. 24 Hours in my life 50cent, I am willing to bet you couldn't handle it tough guy.

This is what autistic looks like

.My son is smart, loving, witty, caring, and intelligent.Perhaps you could learn something from him.
A Very Angry Autism Parent

What If

I feel stuck.

I am having some minor health issues right now. My kidneys tend to flare up here and there and unfortunately I am dealing with a major flare up right now. Being pregnant makes it harder to deal with. I had too many nuts and not enough water. I was trying to increase my protein intake to make sure baby bean grows ok. Now I'm in pain and on medicine and all of that makes me worry. I have no choice but to take the antibiotics since my kidneys are badly infected and they hurt. Dealing with this on top of some other emotional drama makes me feel yucky. So I feel stuck.

Stuck because I have to take these meds and I don't know that they are really "safe". What if What if What if... It's like being on a never ending carousel ride that plays off key music. I can't quite make it stop and that makes it hard.

I took Zoloft when I was pregnant with Sammy. I was depressed. There were so many hurtful bad things going on in my life back then. Two things in particular that shook me beyond anything I could ever put into words.I couldn't cope, so I cleaned. I would stay up to all hours of the night crying and cleaning. I was out of control and the only think keeping me moving forward was the boys. I needed to be there for them. I needed help, so I got help.

Now there are studies linking Zoloft to autism. Damn it. Damn It DAMN IT! like I dont blame myself enough already? As if the guilt doesn't kill me every single time that kid melts down. As if I wasn't already blaming myself. But it was safe then, or so they thought. I had to do something...right?

So what if these "safe medications" I am taking now change the game plan? What If ...What IF... WHAT IF?

Thursday, July 5, 2012

Triggers, Tears, and Blessings

There are those moments in your head when everything swims around like stirred soup. Like soup it settles after a time. I am up late at work and spending time reading other blogs. It's like playing leap frog, from one blog that links another blog, then another. Some are great and so well written and still others I skip over quickly. I ended up on blogs tonight of families that lost babies.

I know better than to read these things. I KNOW BETTER... but I read on anyway. Somewhere inside I hope that somehow I can desensitize myself enough so that if it happens I won't break.  I always end up in tears begging God to not take my babies.I know, that should it happen, there is nothing anyone can do to make it not hurt.  I know better than to think of these things , especially when I am pregnant.

But it places things into perspective for me. It reminds me of how lucky I am to hold and touch and kiss my challenges.
It puts into perspective how blessed I am to be breaking up fights between Sammy and Nate. That when Nate has woken me up from my nap 134,543,345,345 times, that I am lucky that he wants just one more kiss from mamma. It takes the frustration I feel over curfew arguments and dating rules and reminds me I am blessed. My kids may forget to do their laundry and have messy rooms... but they are here. So for today the dishes can stay in the dishwasher and the laundry can wrinkle alone in the dryer. I am going to hug my kids and love them today. I am going to count my blessings and carry my crosses, because heaven knows...

I am blessed

Tuesday, July 3, 2012

Fireworks, Cannons and Cars

I want to surprise the kids with an early morning outing tomorrow to the local beach. There are these giant cannons at the beach, and the town will be firing them off tomorrow. I want to surprise the boys with this, but I can't. In our house, if we include Sammy, there can be no surprises. Not even good ones. He cannot take the pressure of it and it makes his anxiety sky rocket. I can't just prepare him because he doesn't understand how to keep secrets.

he dug a hole and stuck his head in...

I will tell him in the morning before we leave, but not too soon before. If he has too much time to think about it, he will melt. If I don't give him enough time, he will melt.
Holidays are just plain tough. You can see how much he wants to enjoy the fun. He wants to be part of it. Sometimes, he is wonderful. Sometimes he keeps it all together until we get in the car and then he melts down. Sometimes, he looses it right where we are and I can't do anything but hold him and protect him.

We will go tomorrow for 30 minutes. We will end on a good note. I will set my expectations as low as possible. Wish me luck!

Guardian-keeper for life

You, you who has smiled when you’re in pain 
You who has soldiered through the profane 
They were distracted and shut down 

So why, why would you talk to me at all 
such words were dishonorable and in vain 
their promise as solid as a fog 

and where was your watchman then 

I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honor of all, as your guardian 

you, you in the chaos feigning sane 
You who has pushed beyond what’s humane 
Them as the ghostly tumbleweed 

And where was your watchman then 

I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honor of all, as your guardian 

Reading the lyrics I am sure Alanis didn't intent to speak to me about my son and his autism. Yes HIS autism, because you see, every child's autism is different.  I read that line  "So Why, why would you talk to me at all , such words were dishonorable and in vain, their promise as solid as a fog." I thought that is where we were. I dared him to speak to me, to find words and use them. Even though for years those words made little sense to him. He spoke in phrases he had heard and scripted for so long.  He was so lost for so long it was like watching a giant tumbleweed. He was in pain trying so hard and I didn't get it because I couldn't see past my pain. Where was his watchman then? I was right there, I just didn't get it yet.

I get it now. I hope he knows that. I hope he knows that I am his keeper for life, I will always be his warrior and his angel. I love that boy with every breath that is in me, in ways I can't even put into words. I may not really like his some days, but I always love him. I feel a deep responsibility for Samuel. More so than the other kids, simply because he needs it more.  He needs me more. I feel as though I must protect him, not just from everyone else, but from himself as well. He is a stunning little man and I am so blessed to have him. I feel bad that being with him makes me so tired!

So while I am sure Alanis didn't intend to trigger this post about my son, she did. Thank you Alanis for writing a song I can relate to. The song brought me back and reminded me, that he has overcome so much.

Monday, July 2, 2012

The question

     The last few days I have talked to dozens of people about Sam and Autism. It seems to come up and it seems as soon as they realize Sammy has autism they have questions. I don't mind questions. In fact I love them because if it open up communication between people we level the playing field. If everything is out in the open, parents will get the services they need and things will get better for everyone. Especially our kids!

     The question I get most often is "When did you know?" they rarely label it, they just leave it hanging there. The first time someone asked me I looked at them and asked "Know what?" In my naivety I had no idea what they were asking about.  It's a hard question to answer because it such a lengthy answer. The bottom line is I always knew, I just didn't KNOW.

    I always knew something was different about my boy. He stared at me intently from the day he was born. I remember sitting in my hospital room looking at him. I was unnerved that he looked like he both saw through me and into me all at the same time. It is the same look I get from him now whenever I get real meaningful eye contact. It's like he can read my heart like a book.  He never looked at me when he nursed though, it was always all business.
     I remember him at 9 months old. He didn't have an ounce of separation anxiety. I remember joking with my husband that it was like he didn't even know I was his mother. He would hit and laugh and if you corrected him nothing happened. He didn't cry at raised voices. He would wake us up at 10 months old with a video of veggie tales humming and rocking. We thought he was singing the theme song, yeah not so much.

     I remember him at 18 months retreating into his world, pulling away, and becoming angry. He would run from us everywhere we went. he wouldn't sit still at the table. He stopped talking, he stopped moving forward. The cars that he would once roll back and forth sat lined up along the floor. His blocks lined up by color as he stacked them over and over.
     I remember him at a family Christmas just after he turned 2. I remember how he darted around and frustrated everyone there. I remember that no one connected to him. He didn't even want to open gifts, we ended up outside in the cold spinning in circles.
     I remember him at 3 when his little brother was born and he would softly touch his head. I remember the fear as Sammy would flip out near the baby with his arms and legs flailing everywhere. I remember him squirting his uncle with a water gun and for the first time ever he cried at being yelled at.
     I remember sitting in the office being told that my son had autism. I remember thinking at first that the doctor had to be wrong. He was just young for his age and immature. He must just have ADD. Then I cried.

Somewhere inside though, there was relief because it had a name. This entity that was taking the joy of raising Sammy from us. I demonized it but I knew it was right. I knew all along, I just didn't want to see it.

I use to say that because of it I lost precious months and years of help he could have had, and while yes that is true. It's only half the story.

The other half of that is nothing would have changed who he is. My fluffy headed wonder child with the blueberry eyes and electric smile is still the same boy on the inside that he always was. Autism didn't change him, it was always there. Autism changed me. It's still changing me in ways I haven't put into words yet.

So when people ask I always say "I always knew he was special, I just didn't have a name for it" That, is the absolute truth.