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

Another One Rides The Bus

Sammy is impulsive. Super impulsive. I mean like middle of the sentence punches you for no reason because it crossed his mind kind of impulsive. We have an issue with this of course. I can't allow him to beat people up, or spit, or pee on the sidewalk, or strip in public. It has happened but we don't allow it to. For those of you with Special kids you get what I mean.

We are on warning 4-5 with the bus company. Usually, its 3 warnings and they are off the bus. It hasn't been said to me yet and I doubt it will right now.

Sam's team is awesome, I think I said it before. Even his teacher, that we weren't too sure about at the beginning of the year is getting most of the stuff. She's been very patient with Sammy and dear Lord has he given her a run for it this year.

At his team meeting a few weeks ago we talked about a bunch of stuff. Bus issues came up ( I brought them up) and we talked through ways to help. A front seat doesn't do much good because the other kids with "behavior issues" just sit next to him in the front as well. I wanted to have him use his noise cancelling headphones, but Ms. G made a great suggestion. Get him an something to listen to so he doesn't just stand out. The other kids will not pick on him for it and he can sit and be mellow on the bus. So I cleared and re programed my ipod. I double checked for questionable songs, and he takes it to school. When he gets there, his principle or aid take it from him and put it away safe. He gets it when it is time to go. SO far SO good. he seems to love and appreciate the music and it makes him happy happy to have it with him.

So far the bus driver is happy with his behavior as well. I just don't want to get any more notes from the bus company telling me he was "being annoying to others"

missing

just a warning this post is 100% irrational pity party. I apologize up front. you may want to skip this



As a mom it's my job to protect my babies. I can't seem to let go of the failure of it. I hear sirens and I  cant breath. I see an ambulance and I my heart races. I look at pictures of baby girl before and my heart just breaks into pieces. I just want to cry... but I can't. There are tears here and there, but nothing major.

My husband isn't over-reacting this way. It's just me.

before

I am so sorry. I feel like it's just one more failure, one more piece of this puzzle that I lost.It's just one more thing I can't make right, I can't control and I can't change. I can't take it back. I can't fix it. It's an endless loop in my head "damn it Annie, if you had taken her,if you hadn't just needed a minute. Why didn't you listen to the voice in your head that said PUT HER IN HER SEAT ?? then this would not have happened." That's all I can hear. I feel stupid feeling so sad. She's a rock star. She is doing so well I cant even put it into words. She doesn't pick or poke and she lets me cover it in medicine. It would be nice if she stopped picking up beads and trying  (and sometimes succeeding) to eat them.

I always said God didn't give me a girl because he knew I would screw it up. I would damage her. I laughed about it when boy number 4 was born. Look what happened, he gave me a girl and yup... I screwed it up.

after

I know it isn't logical or healthy or any of those good sort of emotions. It's been 12 days.  Shouldn't I be over this already? really? what the hell is wrong with me that I am still so stuck on this when no one else around me is. you can tell me it's the trauma of it or what have you but my husband was there too and he doesn't feel like this...

There is a tiny white line across her lip where it's starting to really heal. I can count each stitch on the outer layer of her skin. Tiny little dimples along the jagged bright pink line that no one can see in her pictures. It might as well be neon green in my eyes. All i see in it is the failure to protect my girl, the loss of what she was. Yet another hurdle she has to jump, like having me as her momma isn't going to suck enough, now she has a giant scar to remind her that momma didn't protect her.

My Broken Heart

My Broken Heart

Some of you may know that our dog bit the baby. It was horrible and brutal , there was blood everywhere. I am heartbroken and confused. I don’t know what to do.

My beautiful girl received over 40 stitches in her lip. Our Dog was quarantined. My family was heartbroken. It was an accident, the dog had a bone that smelled like another dog, he became possessive. We put him in his kennel, Sammy let him out, the baby accidentally got put down just a little too close by our oldest son. The dog felt threatened and snapped. Tyler saved the day and got the baby because he was right there. So it probably could have been worse. Regardless, it’s bad enough.

I feel like I have sacrificed one child for another. My sweet baby girl that lights up my days was hurt. I can’t even put my thoughts together completely. I just hurt so much. I still haven’t cried yet. I think I am still in survival mode and keeping busy figuring out what exactly to do about the dog. If this had been about anything other than food, I would feel differently. This dog has never shown any sort of aggression before. It’s random. If I lost it and beat the crap out of my husband I would hope he would forgive me and move on. I know it’s not the same. I know…

I know a lot of you won’t agree on this. I understand where your coming from and I hear you. It isn’t that simple. I love this dog, the kids love this dog. Sammy has thrived in more ways than I can express since we brought him home. He is family.

I can’t eat. I sleep in fits and starts, small spaces in between flashbacks and dreams. Sounds and smells of that night are still preventing me from eating. My stomach is in knots.  I can’t put her down. I feel like I am being chased by a lion. I am heartbroken… or maybe just broken.


joining up with Shell once again.

Blessings

I don't often write on a weekend, there is often just too much to do around here. Sunday's are usually really hard for Sammy, but with the sunshine and  slightly warmer weather, everyone is outside right now. We missed mass this morning because the car was being fixed, so we will go tonight. By then Sammy will already be dressed so it shouldn't be the drama it usually is. I may actually get to enjoy it tonight!

I am not writing for any of those reasons, but because I wanted you all to know how very very blessed I feel! I never would have imagined 4 years ago that Sammy would be able to touch so many lives. I get letters here and there from people who have been touched by his story. I get emails from moms that no longer feel so alone. I get asked for advice. Sammy inspires people through this blog. over 200 people are now reading almost every day according to my stats. I don't feel prepared for any of it, but regardless it's there.

Shannon AKA "my ponytail"

I wanted you all to know about the Autism 5K that my friend is doing. The team name is "For Sammy" take a look at this! Now, when I saw this I burst into tears. Not misty eyes little tears , but catch in your throat kind of tears. The ones you can't stop, can't fight, and can't forget. Shannon has helped us with Sammy's behavior for just about forever.Sammy loves her and called her "My Ponytail" for a long time. She is one of my very closest friends and one of the few I consider part of my village. I am blessed beyond measure by her. I know that she is ALWAYS in my corner. I know she loves Sammy. So she names this group "For Sammy" and the proceeds are going to autism research.

I don't think I have ever felt so lucky,loved and grateful as I do right now. Thank you Shannon, from Sammy, our family, and every child this will help. It is such a BIG DEAL.

I am blessed to have you in my life.

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...

Transitions

Tyler's school has a new SPED director. She seems on the ball and forward thinking. She sent me a link for a transition fair at Taunton High, so I went.

I got a ton of amazing information on what to do for Tyler when it comes to college. I know he seems like he will be fine, but I don't want to assume. I want to set him up for real success. He is qulified for the Autism Division through DDS, and that will alow him to get services after high school. There are services for kids like him that will help him start his own business, get through college, and prepare him for life on his own.  I am suddenly even more excited about Tyler's future. 

There was a time in 7th grade when he was failing everything , and a time in 3rd grade, when I couldn't understand why it was so hard for him. I was so frustrated and scared for him. I was worried he wouldn't be ok. He has grown into such an amazing,strong, thoughtful young man. He is so good at wrestling. He is amazing when it comes to trees.

I found out there are a ton of college services at the local college. I have so much information to go through my head is just spinning! 

I am That Mom Too

 I read THIS at Things I Can't Say I sat for a few minutes before I could even respond. You see it is so hard to type a reply when you have tears in your eyes.

I am that mom too, and  I know it.

I use to be the one who thought "I would never let my child speak that way"  I think I may have patted myself on the back a few times thinking I was good at this parenting thing. Then along came Sammy and he changed the game.

I realize now I have no clue what I am doing.

Sammy can be (and often is) the most amazing loving sweet child. He leans on me and kisses me without warning. He loves me, I know he does. When Sammy gets mad all bets are off. I have been called vile, horrible things. Words I have discovered were learned when the older child put music on my iPod. It takes everything I have to not loose it in those moments, because lets be real here, Sam is a child with such a limit on his understanding. I have begun telling him that it hurts my feelings. He seems so shocked by that every time.

Everyday at least once, he tells me he hates me, that I am a moron. He wants a new mommy, I am a bi***. People stare, they comment, they intervene.
Guess what ? I know you are trying to be helpful. I know you mean well. Please, You aren't helping. If you see me or another mom like me, don't offer advice, offer chocolate or wine. If you aren't going to give me a vacation for free then please don't give me that look that says "poor you". Do not tell me I need to spank him, scold him, call the police, parent better, parent more, parent less,jump up and down , spit wooden nickles or say prayers in Latin. The truth is It isn't me, it's him.
I can handle it. I handle it every day, before you and after you. You have no idea what I deal with on a daily basis. Be grateful the child has pants on. A year ago that may have not been the case. This too shall pass and we will be on to something else.

Anxiously

I had to drive to work tonight. It was snowing. I hate driving in the snow. I know what your thinking "Why the hell does she live in New England?"
My family is here. I grew up here. the anxiety over the snow just started the last few years or so. It has gotten really bad lately. I find myself anxious or on edge a lot more than normal. Tonight was different.

The snow was unexpected. I thought it was done. I didn't go into work yesterday because I didn't want to get stuck up in Boston an hour from home in 6-8 inches of snow. Now to be fair Boston itself doesn't have a ton of snow, but it was night time and dark and snowing really bad.

I felt like I couldn't feel my fingers. I couldn't catch my breath. I wanted to throw up.I was crying and praying and begging God to not take me from my babies. I was sure if the snow didn't kill me the anxiety would. I wanted to pull over on the highway but I was closer to work then home at that point. I was terrified, my entire being was shaking. I kept screaming at the snow as it came down, tears streaming down my face. I found myself flapping my hand so much like Sammy does. In that moment everything froze.

OH MY GOD IS THIS HOW HE FEELS EVERY DAY??

I get it now. Sort of. I don't think I will ever be able to wrap my head around everything he feels. I get the anxiety. I have had panic attacks before, but this was different. this was like slamming my face into a brick wall. I couldn't stop it, I had to keep going even though every second hurt more. There was no way to get free from it, there was no way to make it better other than getting to the end of my trip. My poor boy , feeling that way every day , getting dressed and going to school. I got here and I shook so bad I couldn't even stand up! My poor sweet boy, I have lost my temper when he was melting down before. I have snapped and yelled. My God, I am so sorry. If anyone had yelled at me during that, I would have completely fallen apart.

If that is how he feels all the time, I think it may be time to consider medication. Maybe for us both.

There is no I in Team

There is no I in Team ~ unless you talk about the IEP team, then of course you do find an I, but it's not part of the word team, just part of the phrase.

I feel blessed. seriously amazingly blessed to have the team we do for Sammy.

Sammy has been struggling for a few weeks...months at school. It has gotten steadily worse to a point where he was refusing to do his school work, getting sent to see the principle, bringing home extra work he didn't finish and so forth. Nothing was working. Nothing we tried seemed to help. His principle even called during vacation week hoping we could figure something out before we went back this past Monday.

 We included a friend of mine that works with kids like Sammy , his teacher, the principle and myself on an email. We considered having him stay after school to finish, but given the fact that Sammy asks me every day to pick him up that probably wasn't a great idea.

Here is what we all came up with. If he completes his work during the afternoon he get's video game time at home. 30minutes right after school to play his beloved star wars lego game. If he does not complete his 3 things then he does not get his video game time right after school and looses his choice for the SWL(Star Wars Lego) game for his evening time . He can choose his other games for that time. His principle came up with an awesome visual for him and we are not 3 for 3.

I love our team. I really feel like I am heard. More importantly I feel like Sammy has a voice for what he needs. I really feel so blessed.