Through my eyes

A dear friend just had her daughter diagnosed with autism. Everyone is telling her how sorry they are and that it will be ok. It made me think of what I wished people had said to me 4 years ago when sammy was diagnosed

1. those words don't change who your child is. He was that person before the words stuck to him like Velcro. The diagnosis doesn't change him it changes you. It changes you from the inside out. You may not even notice at first but wait...you will

2. Give yourself time to cry. If you don't those tears will hunt you down at a time when you least expect it. Like when your standing in the grocery store  in the middle of a ton of people.

3. Be ready. For the moments that make you smile,the ones that make you scream and the ones that make your head spin. Be ready for laughter and tears and everything in between. Be ready to feel an entire range of emotions in a split second with no warning over something ridiculous.

4. Know that the people who discount your struggles are just trying to help. They don't understand what an ass it makes them sound like. They don't understand how much it frustrates you.

5. Know that there are people out there to help.Don't give up.Don't give up..Did I mention DONT GIVE UP

6. It's not you. You didn't create his Autsim. You didn't do anything wrong.It isn't your fault.In a few years a study will come out linking zoloft use in pregnant women to autism.  It isn't your fault. You made the best decisions you could at the time with the information you had.

7. The people who remind you how it could be worse will make you want to scream. yes,it could be worse,but right now that doesnt matter,THIS is hard enough

8. This is not the end of the world, it just feels like it.

9. find diary of a mom's blog. read it. breath cry read it again.

10. One foot in front of the other. It may never be the same, but it will be OK.

One foot

One foot in front of the other. I have amazing panic levels right now. After taking my two youngest to the pediatrician today  I am still spinning, in fact I can't feel my toes. I can't think I can hardly breath.  after checking both children for developmental red flags we have received good and concerning news.

Grace is ahead of the game. Her development across the board is about 9-12 months. She is in the 25% for weight and 75% for height. shes healthy and amazing

Nate is social engaging and wonderful but there were lot's of red flags. Developmentally they feel he is behind and that something is just not right. They have referred us to a specialist at our local children's hospital. I want to throw up. I want to scream.I want to swear and cry and freak out. I am pissed. I am scared. my head hurts and I just want to give up. God help me.

9000

We have hit 9000 views. Again totally arbitrary number but it's more than double in just a few short months. I wanted to thank you all for stopping in. I appreciate knowing this blog gets read.

My Heart Monday

Sam I am can be volatile. You all know that so it's no surprise that  the last five days have been chaotic. I hate and love having him home. Some days he makes me cry and other's he makes me laugh so hard I cry. I love him every moment but some days I don't like him very much. It's hard to like being called names and being assaulted. That doesn't change how much I love him , or that I would truly do anything for him. It just sucks and it doesn't change.

We went for a tree, after much wailing and gnashing of teeth , we got in the car. He continued to flip out and finally after 25 minutes we were on our way. He was wearing yellow pajamas and an orange shirt with sneakers and no socks. *shrug* oh well I can't win them all. He found two pieces of tree on the ground and turned himself into a deer. I love those moments. I want to freeze those moments and remember only them. I think that somehow if I can string enough of those Fantastic moments together I will be able to pretend the bad ones don't exist.

Decorating the tree was not easy and honestly not a whole lot of fun this year. Sammy had his meltdowns and Nate screeched like a banshee every 30 seconds. I am starting to worry more and more that something is up with Nate. I can't even fully address it because it makes my stomach hurt. The one video I got of Nate shows Sammy in the background flipping out and my poor husband trying to get a grip on the shirtless wonder.

Some day my holidays will be peaceful...wont they?

Loose Connection

On a side note Sammy made me cry today after spitting in my face. I sat here for a minute after he left the room and burst into tears (it doesn't happen often) He came back in the room and saw me crying. He hugged me and nibbled my hair and rubbed my cheek. He asked "who did this to you I'll beat them up" When I told him that HE had done this that HE made me sad when he spit at me, he looked at me with eyes wide. It was a look of sheer horror. I know it wont matter in 5 minutes when he is angry again. I know, but for a split second I made a connection with him.

Thankful?

It's been a week since I have been in this space. An entire week and it feels like a lifetime. One week since I have even had the time to sit and write. I haven't even had the time to breath much less come here.It was a busy week much deserving of solace but with very little of it to go around.

3 half days this week sent Sammy into a tail spin. Each day has gotten worse. On Monday afternoon he broke the glass on my door.  On Tuesday he was sent to the principles office for calling his teacher a name and maniacal laughter.Wednesday I was physically unable to get him to the bus. Thursday was thanksgiving and I gave up. He watched TV all morning. My Uncle and his lovely daughter were here, along with my parents, my brother and his amazing fiance. Miss B has autism too, though she is differently affected than Sammy or Tyler. She sat at the kid table (what was I thinking with a kid's table?) MissB had a video camera and was taping the kids and this resulted in crazy over the top screaming peals of laughter continually  pouring from the kitchen. By the end of the night both Sammy and Nate were in full meltdown mode as was I. We wanted to take a day Friday and relax and get the tree, however even that didn't work. Sammy has obsessed over his pants being wet and over the possibility of things in his eyes.

It feels like it has been a week of meltdowns (and not just Sammy)

I need to breath.

but it feels like there isn't any air.

this moment

{this moment} - A Friday ritual from Soule Mama. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

If you're inspired to do the same, leave a link to your 'moment' in the comments for all to find and see.

Focus and Determination

                                                        
 Katie was laid to rest this week. A painful but powerful process began as 700+ people came out to pay their respects to an amazing woman. I knew her through our parish family of St. Mary's. I still sing there once a month even though I am currently a parishioner at SFX. Katie always sat in front of the piano and was always smiling.  I know her mother Karen, and she is a wonderful sunshine filled person. This week was particularly hard to take for so many reason.
   This community was ravaged by this horrific accident in our town. One woman is dead, her companion seriously injured, and another woman's life changed forever and an entire family heartbroken. Our town will never be the same again I am sure of that.
   Charlie Murphy spoke so eloquently at her funeral, not a single dry eye in the packed house. I had always known Katie as a happy gentle girl. What I didn't know ,until Charlie spoke , was how powerful that woman was.   I didn't know that her parents were told to abort her 29 years ago, that they chose life and they were given an amazing gift. Katie truly was one in a million. She fought for the rights of all differently-abled people everywhere, she spoke in front of crowds that would make you and me pee our pants. She was persistent and tough and apparently also a bit ornery at times. She was a woman with a mission, a purpose, a faith, and a direction. She worked hard, and even when she couldn't find a job she would do whatever it took because "she had responsibilities and needed to get paid". Some people will do whatever they can to not have to work, but not Katie. She worked hard.  I sat in the church silently. I looked around at how very connected Katie was. She knew everyone and everyone loved her.
   I sat there and listened quietly thinking about the impact she had on our world, and wondering if Sammy would ever be capable of that kind of fire.  I kept thinking about Katie's impact on the world and comparing it to Sammy's. Sammy isn't your sunshine and lollipop kind of kid. He is the child that eats whole bags of lollipops in mere minutes. He is so volatile and forceful. However after hearing Katie's friends and family speak this week I am more convinced than ever that Sammy will do great things.
   Katie gives me Hope, huge pie in the sky hope. The kind of hope that makes me want to get up in the morning, and helps me to breath when Sammy flipped about his pants. I listened closely to the stories her friends and family told and I thought... "there is hope for Sammy". I saw differently abled friends get up and speak and  I watched their parents stand beside them. I watched one mans father help him through probably the hardest speech of his life, and a mother reminding her son about boundaries as he spoke. I saw these people with amazing gifts and strengths and heart. I saw people who wore their hearts on their sleeves and felt every feeling like a flag above a castle. Something I have difficulty with.  All of it, every moment gave me unbridled hope for Sammy.
   This is an incredibly sad and difficult time for her family and close friends and there is nothing I can say or do to change that for anyone. I just want you (yes you) to know that through this I have garnered a ray of sunshine and it gets me through the day.
   Thank you Katie for all you have done and for everything your memory will continue to do.
A walk is being organised in Katie's honor check out the face book page HERE you know you want to. Let them know YLMB sent ya

The Night's Shade

Tonight, Sammy is beside himself. His attitude going down along with the sun.  I have broken up so many fights between him and Nate. He hit me again today, and spat in my face. It is time for me to rethink my position on medication for him I think

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

this moment

 A Friday ritual from Soule Mama, one of my favorite bloggers.  A single photo (or two) – no words – capturing a moment from the week.  A simple, special, extraordinary moment.  A moment I want to pause, savor and remember.  If you’re inspired to do the same, leave a link to your “moment” in the comments for all to find and see.

Finding the Rhyme

    I have been quiet here lately and for that I apologize.
 
    I have been struggling here with so many things. The death of a young woman with developmental disabilities  after a hit and run accent has rocked our town. The young woman Katie, was extraordinary in so many ways. Always happy and smiling and helpful. She went to our church, helped in some of the ministries and was faithful and unshakable in her faith.

    Her mother was also an incredible woman, one of the first people I spoke with after Sammy was diagnosed. Karen was just a few feet away as I lost it in the grocery store trying to figure all of this out and becoming overwhelmed to the point of tears. She spoke softly and assured me it would be ok. It made a world of difference to me that night, She gave me hope, as did Katie in her sheer awesomeness. My mother knows her as well, she is just one of those people you have to love. At least that is how I see it. I don't know if she is even aware of the impact she and Katie had on me. The hope and strength they both gave me and how grateful I am for that.

    This tragedy has rocked our little town. Everyone here knew Katie, she was just a ray of sunshine to everyone she came near. It has rocked me in so many different ways.

    I keep thinking about Karen, and how much this must hurt for her. She loves her daughter so much. Having a daughter of my own now gives me a different perspective. It's painful to think about. In fact it makes me ill to think about it. I can't wrap my head around the anguish and pain that poor woman must feel.

    I keep thinking about Katie. I cant imagine life was easy, but I don't think I ever once saw her not smiling. Really, not one time! I think about all the amazing things she was doing with her life, her time, her energy. I am not even half as productive.

    I keep thinking about Sammy and his adulthood, about his frailty and strength. I think about Sammy and his naivety, his anger,his fortitude. I think about Sammy and all he is to me and how his future is so cloudy. I have no idea what I think really it just overwhelms me with deep sadness and confusion. I may make sense of this someday. I highly doubt that, but I may try. If I figure out I will be back to let you know. I promise. If nothing else but to record it, make it permanent and static.

   until then ...

Sleep sweet miss Katie

My Heart Monday

I love him so much. I watch him sleep and all I can think about is how much I just want to snuggle up beside him and kiss his feathery soft hair. Some nights I do and some times he even knows I am there. It's better than trying to hug him when he is awake and aware. It's those moments when he pushes me away that my heart breaks. He spit in my face last night. He told me he hoped I would die in the middle of the store. Strong words and strong actions from a very angry young man. He gets it out the only way he can. His disappointment , his rage and his fear all scream from his fingertips towards me with speed nothing short of a bullet train. I can't ever get out of the way fast enough.

I love him so much I want to make his world gum drops and candy canes. I want him to see the wonder around him and enjoy the smell of dinner. I love him so much I want to carry the burden for him, I want to make it ok. I want to protect him from the snow that falls in winter and the nasty comments strangers make about us behind our backs. I love him so much I want to hug him and have him enjoy hugging me back every time. I don't want it to be like Russian Roulette, wondering if the next time will be the time he punches me in the gut again.

I love him so much I want him to know and understand that when he says mean things it makes me sad and he does know but he doesnt understand. I love him so much I would walk through a bear cave on the first day of Spring carrying food if it meant he wouldn't have to fight the demons that chase him. I would do anything if it meant that he could just sit quiet inside his head with out the darkness finding him. I would trade my every breath if it meant that he could just live and love and breath without the constant dfear and fight inside him.
Because , you see, I love my son.

So tonight I sit and watch as he sleeps. I gently touch his feather soft hair, the color of straw, brushed across his forehead (except where he cut it at school). I kiss is soft doughy cheeks, his long dark lashes and nuzzle his neck with my nose. I whisper to him how much I love him, that he is my Super Sammy. I whisper how happy I am that I have such a great boy and slip from his room before the tears take over because he doesn't like being wet.  I stand outside his room and I cry and I pray that somehow he will find relief. Then I sit here to write and pour out my heart because there is nowhere else that can contain the racing horses inside of me. I love my son with the fierceness that is everything I ever thought I could never be. I love my son.

It's about time

All we needed was one night of no hitting. One night without death threats and other such yuck.
Sammy did it! YAY. I am so happy. He did start to slip up at one point and I warned him. I always remind him the same way with "Are you earning? It's your decision. Breath and think" and for the very first time ever in his entire life. EVER. he stopped and thought about it (I don't know if he was actually thinking or just acting the part) and repeated " I am earning" What an amazing moment! I don't think I have been this happy since the day he spoke the first time.

This was huge, tremendous,incredible,amazing and all of those wonderful words one can think about! I am so proud of Sammy. He did watch the movie (Gnomio and Juliette) Thank you Tess for Netflicks!
When I told him I was making popcorn he said he didn't believe me because he couldn't smell it. I brought him over to the cast iron pan it was cooking in and showed him. We had a wonderful snuggle and hug while we waited for it to pop.

Moments like this are such a breath of fresh air. It's like that first kind of warm sunny day after the winter when you get to open your windows and let the fresh air in. yeah that.

the snowball

I found this at Soule Mama

This moment ~a friday ritual a single photo- no words capturing a moment from the week.

if your inspired to do the same leave a link to your moment here or over at soule mama.

Perspective directive

 Have you ever had to describe something to another person? Of course you have unless you have been living under a rock or you are entirely non verbal. Even babies will get their point across by making up signs, throwing themselves toward the object or by using some other squealing/screaming/wailing protocol. Descriptive words come pretty standard to most people and it is fairly easy to find the words to make another person understand what your talking about. Unless, your Sammy.

In our house context clues mean nothing and often times Sammy describes things in minute detail while leaving out the larger picture. Movies are often the hardest for us because he sees details that my husband and I do not. It's like trying to make a puzzle when all of the pieces are face down except for one. Sammy is trying to earn a movie night at home here. So close, just one day without death threats or hitting me.He almost made it last night until he lost it as we were sitting down to dinner and I got punched in the leg.

He came downstairs after calming down

He kept asking for the glass people movie. the move you know with glass people. When he was pressed for more information this is what we got

"The glass movie,not like mirror glass.the people they are made of glass. there are flowers and a tree it gets chopped up and one of the people get chopped up.There is a bird ,hes not glass he's plastic.One girl gets glue on her.they are made of glass"

well...
Finally he tells me they are red and blue and live in the back yard. At this point I figured it out. did you?
I'll let you know later which movie it was. So take a guess.

It's Just Me

We had a team meeting yesterday at Sammy's school. We had some concerns about the behavior plan being used in Sammy's classroom. After a very productive meeting I walked out feeling mixed emotions.

Before the meeting I was sick to my stomach, stressed and anxious. I wanted to put on my jammies and curl up on the couch. I wanted nothing to do with the meeting my husband had scheduled. I felt like I was going into battle. ( I wonder if this is how Sammy feels in the morning) This reaction to team meetings have nothing to do with the professionals at my sons school. It's my baggage and that is a long story stemming from issues with my x-husband and his family.

The meeting went well, we are all in fact on the same page and we are very lucky to have such a loving and caring team.I still am not sure how I feel about the teacher but I can see she likes Sammy. Sammy is beginning to read and really just doing well in school this year academically...I think.  I thought that last year and it turned out, he was doing great for Sammy just not great for a first grader.

His behavior at school has improved and the teacher assured me she is giving him plenty of leeway in the right places. He doesn't act even nearly as bad at school as he does at home. Not.Even.Close.

So I left there and all I can think is "It's me" It must be me, I must be doing something wrong to elicit this response from Sammy. I get all the anger, frustration and abuse. Meanwhile the school must either think I'm lying or crazy. They must think it's me that I am a bad mother. That I am a failure. It's my worst fears come true.

I am very careful to tell the truth even when it's not pretty , even when I know I didn't handle it well because I am not a liar. That I can control. I may be a failure, I may be doing it wrong. It may be me. I am living this life, no one else and I am the one doing battle each day. So when it comes down to it I have to live with myself everyday and I am doing the best that I can.