Christmas Eve

I's Christmas Eve and most of the kids are almost drunk with excitement. They keep talking about what Santa is bringing. The older two are thrilled to be going to their grandmothers house for a few hours. They are happy to escape the chaos for a few hours.

For Sammy Christmas might as well be over. He got the one thing he hoped for from my mom last night. Lego Star Wars 3. Seriously its like the autism trifecta! Starwars - Lego and video games. It's a stim utopia! I am hearing STUDS! every minute or so. I love seeing my boy so happy

Yesterday was really rough. Sammy had so many meltdowns. The medication for his Croup is messing with him. He was beside himself . He couldn't stop screaming. He was hitting and biting and just desperate for solace. He couldn't get it together and it made my heart hurt. We packed his bag for the crisis center and he finally calmed down.

He said something that really made me think. He asked to be squeezed. He said when he gets upset he needs to be squeezed. Now I knew that in the sense that I know he has autism and it's helpful. What I didn't understand was that he knows that too. I didn't realize that he could communicate that to me.

Tonight and tomorrow I will be selling out and letting him just play lego star wars. Merry Christmas

My Heart Monday

Sometimes you just have to show up. That's it. Nothing else. No fireworks, no drum roll, nothing.Just. Show. Up. It's all you get and it has to be good enough even when it isn't.
We had Daniel's family Christmas yesterday. It was without major meltdown or drama. Sammy only bolted once from the house without shoes down the driveway. He went without his shoes on and protested changing out of the damn corduroys he has been wearing all week (yes all week that is another post in and of itself).

Sounds like success right? Not exactly. He didn't engage, he didn't enjoy and he didn't show up.Well he may have enjoyed all by himself. My boy was vacant for the day. Appropriate with his scripted niceties and common conversation (which isn't really conversation at all) No Sammy stories that are both outlandish and endearing. He was there in body, dressed well except for shoes. He found Lego guys downstairs in the basement and that was where he was. All Day.

He refused presents. He refused interaction. He refused to show up. We had one flash of Sammy. One bit of glimmer and one private moment that I treasure as the highlight of the day.

I went to ask him if he would like to come up for presents.
ME ~ Sammy it's time to open presents. Come upstairs please?
Sam ~ No thanks
ME ~ You don't want presents Sammy?
Sam ~ No thanks. (long pause) I need more guys.More Lego guys.Can you find them for me.
ME ~ Oh.? (at this point my eyes kind of welled up. He doesn't ask for help with much.) sure

we found a few more Lego guys for his project and he sat quietly. 2 more times I went down and after the third try he came up to open gifts. he smiled,said thank you and was polite. He got a bull horn that changes his voice. He lit up like a tree. The Aunts kept apologizing for the gift , Tracey picked it out. Tracey is an OT, she knows Sammy is a sensory seeker. SCORE Tracey. He has said things today and last night through his bull horn in all sorts of voices that he would never have said without it. My boy showed up for a few minutes. I'll take it.

Dan and I decided we liked it this way though. He dealt with today in a way he was happy. I can't complain about that. So protocol from now on. We bring Lego blocks, we let him be...anything else is cake!

Th Ghosts of Christmas Past

 I admit it. I am not a fan of this holiday. While some families are tucked in their beds with visions of sugarplums, I am trying to figure out a way to lesson the sheer volume of meltdown occurring in my house. Sammy has his issues and the holidays just exacerbate that now add into that a baby who is having her first Christmas, 2 teens and a 4 year old with sensory sensitivities.

2008

 I don't want to miss a minute of Grace's wonderment  with the lights and sounds, but instead I end up often trading that for a hold on Sammy. I don't want her to grow up thinking chaos is a way of life. I don't want her to look back on her childhood and be sad.
 I don't want Nate to feel lost in the shuffle between a girl baby  and a brother with "issues" he cannot even come close to comprehending. After all how to do you explain autism to a four year old? Why the hell should I have to? Why should he even have to carry any of this. I sit here as Nate becomes overwhelmed with the noise and stress level. Sammy thinks it's hysterical and then begins the "crazy laugh" Nate gets even more upset.
The older boys handle it well but poor AJ gets crap so often. Sammy can trip over his own feet stumble and fall, get up and punch AJ. Because somewhere in his head he thinks it's his fault. Everything becomes AJ's fault in Sammy's head, sometimes when AJ isn't .even.home.

2009

Today is Dan's family Christmas. We have gone over behavior and expectations. We have done a social story. We have talked about it and role played. Still, while  he may hold it together while we are there I can almost place bets on how far from the party we get before Sammy looses his crap.
 I try not to focus on Christmas past before we understood what the issue was. Christmas past when I was told I needed to "get my kid" because he was touching everything and making other family members uncomfortable. Where I got looks and stares that threw me for a loop. When Sammy punched me in the face in front of a group of people. When  I was treated like I didn't exist and neither did he. I still hurt from those things, they don't go away. Yet, every year I put a happy face on suck it up. I try to make this time happy.

2010

I'm tired and I am worn out. There is still this small glimmer inside of me that hopes for a great day tomorrow. I don't get to be hopeful often. I protect myself from that like the plague. I want him to show excitement. I want him to play with toys. I want him to be happy and for others to see the ray of sunshine inside that boy who lights up my life. I need him to engage, be present,show up. I know he may for a second or two here and there. He may be socially appropriate some of the time. Truth is he will most likely be running laps around the house or swinging on the swings.  He may not be present at all. It hurts to know that in the back of my mind, but I still... remain hopeful. Like a child on Christmas even who wants something nearly impossible I hope and I pray but in my heart of hearts I know I wont have the Christmas I want, so I just need to WANT the Christmas I have.

It just always ends in tears.. for both of us.

Myths about Autism | autism myths

Myths about Autism | autism myths:

'via Blog this'

The ideas people often have about autism amaze me. I hear quite often things like " I do that too and I'm not autistic" or "but he looks so normal" Normal is always spoken in a hushed kind of whisper similar to the way my grandmothers generation spoke of "the Cancer"

I guess they are looking for something to say. The frailty and honesty of the entire situation leaves people uncomfortable and shaky. I get it. kind of.

I have the tendency to shoot from the hip much the same way my Sammy does. It comes out of my mouth well before I even realize how inappropriate it sounds. I don't mean to be rude but I often end up apologizing for something I have said. So I get it. I never MEAN to hurt anyone but I do.

The next thing I get is always the question of super ability, you know like in Rain Man. drives me nutty. Nope Sorry the only super human qualities Sammy possesses are Light speed snack eating, superhuman hulk smash strength and sleepless power.

Light speed Snack eating ~ able to consume large quantities of candy,chips or pretzels the second you turn around.

Superhuman Hulk Smash Strength ~ able to break windows , pans trees and doors at the mere mention of the word no!

Sleepless power ~ the ability to get up at the crack of dawn on non-school days, and if no one notices the ability to stay up until 1am or later like it's nothing. He is then able to function on subsequent weekends and holidays with more vim and vigor than a spring rabbit. Unless of course we are trying to get ready for school or church then his belly hurts, he feels yucky and can't possibly go!

So go over and check out the list I gave you ^ ^ ^ up there. let me know what you think

Jinxed

Damn it 11 days and then today he fell apart. damn it all. I knew it was coming, he woke up on the edge and as a result I'm edgy as well now.

I wanted to share something with you guys! Some of you may know about it, and others may not but it's freaking cool.

How many times have we special parents of special kids been in a group and the conversation turns to how amazing their kids are. I don't know about you, but when they start talking about how Little Sarah got into the advanced classes, skipped a grade, cured athletes foot and wrote her thesis on the benefit of play dough I am the first to walk away from the conversation. Sammy still eats play dough for goodness sake and goes to school without underpants. really. Yeah.

We parent's of kids like Sam have a hard time sharing our children's accomplishments with the general public because... well they simply don't understand why my 7 year old getting his shoes on  with just a little help is such a big deal. It's frustrating and isolating and sometimes really lonely.
Well check out this!

SHUT UP ABOUT YOUR PERFECT KID

ok so take a few and hop over there. Check that out ^ stellar right?

The bonus is it isn't just for special kids like Sammy but for all kids that arent perfect. So many wonderful voices over there. Go on over and check it out. They are on Facebook too so make sure you head over and like them there too. you know you want to

My Hear Monday

I am tired. I am spent. I had a few good moments after a storm with Sammy today.

11 days in a row he has earned his enforcer in the morning, which is a huge accomplishment. I couldn't be more proud of that little guy

momentary quiet

All the children are still sleeping at it is 7:10am. SCORE. seriously now that I have said this I am sure one will be screaming shortly. I have enjoyed my coffee and my prayer time and I enjoyed it so much. Today is my Oldest son's first tournament of the wrestling season. It should be challenging for everyone because it is a memorial tournament for a fellow classmate that died last year in a car accident. The entire team was hard hit and heart broken. This year they are putting into forward momentum.

I read a post over at A diary of a mom yesterday that derailed me. it made me ill. It is disturbing and apparently a recent trend. I searched it on Google and was sickened by the avalanche of information on special needs children killed by their parents. My heart hurts and I cannot seem to wrap my head around it. I feel even more determined to make the Sandcastle Respite theory happen.

After reading all of it I began to think about the part we all play within the autism community and what people think about our lives when they read our words. I don't sugar coat it and I wonder how people see this blog. My husband referred to it as dark. That really isn't where this started for me.

In case it is ever in question. I am frustrated, I am furious, I am sad and I am sometimes overwhelmed. But make no mistake I love my life. I love my son. I am grateful to have him and his sparkle in my world. I wouldn't want to ever be without him. I appreciate and love and am constantly amazed by my Sammy. I wouldn't go so far as to say I wouldn't change him, because I would. I would love to rid him of his demons. I want to fix things not to make him somehow more palatable by society but to make his life easier to swallow for him. I hate to watch him struggle. My frustration and sadness isn't over the stress it causes me..its because of what it does to him. As a mother I hate to see my babies hurt, and Sammy often hurts and there is no way to reach him in those moments and that, that breaks my heart.

I have felt desperate and lost and crazy but never one did the idea of killing my child occur to me.  Granted, Sammy speaks, Sammy cuddles, Sammy has so many positives I could go on for days and bore you all to tears with the awesomeness of my little man.

If you are a parent of a special kid and you are struggling. Find someone to reach out to. Talk to someone. This isn't the end of the world. I promise you even if it feels dark and twisty right now, it won't always be that way. Here are some resources, use them if you need to.

Autism Speaks resource Guide
Autism Society by State

and if nothing else read Welcome to the Club and know you are not alone

This Moment

this moment something I don't want to forget. A moment I want to hold onto and cherish forever.A moment with my handsome amazing son. Started this because of  Soule Mama and for the first time ever, had more than one moment to choose from. So I chose this one for today.

HEY YOU!

Here we are once again.






HEY! YOU!! YES YOU...

Hey autism why don't you pick on someone your own size damn it! You're like the boogie man. You creep around the shadows on the edges of consciousness and terrify people. You attack little kids and steal them from their parents. You take hopes and dreams and suck the life out of the rest of us. You have made me age twice as fast as before while causing my child to age at half speed. How is that OK?

You. are. a. bully. You show no mercy, no discretion, no care for who you touch. You place that icy finger on people and walk away as though you have more important things to do. You create a struggle for the most simple moments. You take away family peace and peace of mind. You have me afraid of every corner I turn. You have me holding my breath and waiting for the shoe to drop. Waiting for the next behavior that sends us to the crisis center. Waiting for the call from school. Waiting to find him gone in the middle of the night because he decided to go and find the neighbors cat or shovel the street.

You, autism, are pervasive and  invasive. You don't give up. You never quit. I can't even watch T.V. shows without you in my face. I want to find the blessing in this. I want to see the bright side. But you know what, you autism have stolen the sunshine and left me only cold dark scary shadows.

Well, Guess what? I am not taking it anymore. YOU HEARD ME. I am done with you. I will do everything I can so that you wont take another child like you have my Sammy. I will not allow it. DO YOU HEAR ME!? I have fought back for my boy. I have breathed and bled and cried to get him back. I was lucky, not everyone is. There is nothing...NOTHING that you can do that will ever EVER make me quit. If I quit you win. I am a sore loser so be ready for me. I am a mama bear and you done ticked me off. It's on my friend. You better watch your back.

My heart Monday

I sing at my old church the first Sunday of each month. I enjoy singing and truly enjoy those masses.  For me, music makes me feel closer to God and it helps me stay focused on where we are in the mass.

I sat in church yesterday and saw an old friend. Our children (Sammy and her daughter) are the same age.  I was suddenly overwhelmed with a sense of extreme bitterness. It was enough that for a moment I couldn't breath. It was like being punched in the stomach. Those of you who know me, know that this is NOT like me.

Why would I feel bitter seeing her? I watched her and her daughter interact. Her daughter sat still with no flapping hands or flicking of pages. They are the same age and her daughter appeared light years older than my son. A difference of century between the two. A chasm as great as the Grand Canyon.
 I learned a long time ago not to compare Sammy to anyone else, but it happened in the blink of an eye. It was a quick gut wrenching punch that sucked the wind from me.

I feel like we all stood before a firing squad and Sammy was the only one hit. I feel like she dodged a bullet. She got lucky. Her kid is fine. I don't know what her life is like. I don't know what issues her daughter may have. I haven't spoken to her really since Sammy was diagnosed.  I wonder if she ever thinks "it could have been me" wen she sees us at church. I wonder if it occurs to her how very lucky she really is. Our children are the same age. There was one other mom that use to come to the crying room with us. Her brother was autistic, she understood. I still see her since our children now go to the same school. Although very different classes. So why do I feel bitterness towards the other woman.

Because it's not fair. It's not. Because I am being judgmental and prickly and mean. Because part of me just sucks. Part of me hates the hand I have been given. Part of me cries and screams that I didn't ask for this I didn't want this I don't deserve this. Part of me wants to run away and cry. Part of me wants to punch autism in the face. Part of me wished I could just make it all go away. Part of me feels judged and pathetic. That part felt bitter and angry that it was my kid and not hers. That part of me is The Bitter Side. The Bitter Side is angry.  The Bitter Side is sad,is tired, is done. It's had enough.The Bitter Side wants my life back.

The other part of me... knows I would never wish this on anyone. I love my son. I would do anything for him. The Other Part of me feels blessed to have such an amazing kid with such huge capabilities. The Other Part of me knows he is mine for a reason,there is a blessing in this,I can do it, I am right for this job. The Other Part of me breaks every time I hear of another child being diagnosed with global delays, autism or anything else. The Other Part of me stands tall and hushes The Bitter Side, rocks it gently to sleep with a lullaby and puts it to bed too. The Other Part of me whispers softly to The Bitter Side, another time my dear, but for now just hush.

As Boys Grow

As boys grow they pull away from their mother. It's a very normal thing to happen. Tyler my oldest son is beginning that it seems. He is never disrespectful or combative. He just seems to need me less. He still hugs me and needs me but I can see him growing up faster by the minute.

I was looking for a picture for this weeks moment our Friday ritual from Soule Mama. and it occured to me. Sammy almost never hugs me any more. He use to be all over me, hugging me until I felt I had to escape. Touching my hair and face and arms and neck over and over. He was always being affectionate but sometimes it crossed a line into too much. I would always remind him to respect my body.

It's been weeks since we have connected for more than a second. My heart hurts. I love that boy so much I can't even think about it without tears stinging my eyes. I want to hold him and love him. He doesn't like being touched these days. I try for hugs and sometimes I get one. Its usually a very patterned response to my request.

Sammy 4 and Tyler 13

I need to reconnect with him. I want to hold him and cuddle him. I want to connect with him. I want to crawl inside his mind and share the space with the demons that torment him. Maybe from inside his head I can fight back. Maybe then I can find the pieces for him and help him not struggle so much. My heart aches with all I CANNOT do for my son. I want him to know I love him. Not just a little but with everything I am. I don't want it to be just words.

He may just be pulling away as Tyler is.

 It's not fair. I have had far less connected time with him. It took forever to even find a window in his world, and now those windows are drawing the shutters closed.

this Moment

This moment~ started over at Soule Mama a picture of one single moment from the week you want to remember,cherish... hold on to forever. Go over and check her out and find your own amazing moment of the week.

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.

FAIL

word parade day at school and I missed the parade. We stayed up late and fixed Sammy's costume for the parade. He was a present. We wrapped a box he wrote the word it was great. I put it into my head 1:30 be at the school. well I figured 1pm so I would find a place to park and I did get there at like 1:09. fed grace and started walking towards the school. I couldn't figure out how I didn't get a better spot. Then I discovered the parade started at 1 not 1:30. I wasn't there for Sammy. Nate was so sad to have missed it. I was heartbroken and drove all the way home in tears.

I thought Sammy would be mad.I expected a melt down and much yelling. What happened next surprised both of us. I asked him if he was mad and then again BURST INTO TEARS. seriously Something isn't right with me today. I told him how sorry I was and that I felt really bad. He hugged me and told me it was OK and that he loved me. he gave me a bracelet and a sticker.

what an amazing little man I have

party time

We had a party and in true Sam form he was a mess all day leading up to it. Screaming and crying over the smallest things. His anxiety at the change in environment was almost too much for him to take. Once everyone got ere he was wild but containable and seemed to have had a pretty good time. He helped me prep food and it made him happy. His costume didn't stay on very long but who really cares about that ! We had fun.

By the end of the night Sammy had been sneaking so many pieces of candy and sweet things he made himself sick, but in the end he was fine really.

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...

 

I want him to be happy

Sam ~I have no idea what that means for Sammy. I guess it goes along with being fulfilled. What does someone need to be happy?

It's difficult for me to imagine Sammy as an adult because I really have no idea how he will change over the next 10 years. There is no rubric for development in this arena.  So lets assume he continues to grow intellectually and emotionally because imagining he can't hurts too much. I can see him with a job he loves. As much as I would love to imagine him a doctor, lawyer or scientist I don't think that is likely. Perhaps he will be a video game designer,an architect, a musician or something that allows him to be hands on. He loves Legos and video games so I think either of those things will make him happy. He thinks outside the box and there are so many ways for him to blossom even I cannot wrap my head around it. He always surprises me and I love that about him. Maybe he wont be able to hold a job and will spend his days playing video games and making puzzles. Will that make him happy? I don't know really. Right now happy for Sammy means no socks,underwear,school  or homework.

I know that regardless of his choices further on in life I am here, in his corner, every day.

Nothing changes that.


Sammy's ideas ~
Mom  ~what makes you happy?
Sam   ~ I want to be a fire fighter when I am tall.I want to be a cop.  I'm going to have a job.
Mom  ~why?
Sam   ~Because cops have guns.
at this point Sammy was done.

speed of thought

In the store today I was greeted by an adult male. I could tell he was special needs , and he reminded me so very much of Sammy. He wanted to see Grace and was so excited that she smiled at him. He and I spoke for a few minutes  about her and how she was a happy baby. He told me that he was a happy baby too and when he was little he hardly ever cried. He was so proud of this fact and was absolutely BEAMING. It got me thinking about Sammy growing up. His future and what that might look like. What do I want for him? What does he want for himself? How do I balance those things?


I want him to be happy.
I want him to be fulfilled.
I want him to know he is a good person, a gift from God Almighty.
I want him to know he is my treasure.
I want him to know how lucky we are to know him
I want him to be loved.

 this week I plan on writing about what each of those things means to me, and hopefully get Sammy to tell me what they mean for him. I need to get reconnected to him. I miss him. This week has just been so hard for all of us. So I'm taking a do over!

My husband is amazing

I have been majorly overwhelmed here lately. So much so that I have passed the baton to my husband in dealing with the behavioral issue at school. My amazing husband wrote our liaison  at the school. He did a better job than I possibly could have. He was clear and concise without sounding angry. I just wanted to share with all of you how very lucky I feel right now.

The situation I called you about is Sam's escalating negative behavior.  He is having a problem on the bus, in the classroom and at home.  His physical aggression is getting worse and we are looking into getting help in the home for Sam.  My wife and I are concerned about the behavior chart for the classroom.  He got marked down for not turning in the signed chart (our fault), not having his name on his paper, as well as the whole classroom being disruptive.  I understand he is being treated as all the other students are being treated but he is still a special needs student. If this system worked for Sam I would support it. However, the increased trouble Sam is having keeping himself under control tells me otherwise. We would like to meet with Ms. * about Sam's issues but we would like the support of the whole team who is working with Sam.  Please let me know how to arrange this.  The best way to reach me is by phone after 3:00 P.M.

Thank you,

He did such a wonderful thing not just for Sammy but for me. He took the reigns and helped me feel so much less stressed. I needed this. When the divorce statistics are so high for families of special needs children, I feel blessed to have him in my corner. Tell me about the people in your corner.

coffee and a side of sunshine

5am here is rather dark and my it's the time my husband is getting up and ready for work.  He often places at least one sleeping child, sometimes two back into their beds as I pump. I let him leave Nate so I had someone warm in the bed, but had him put Sam back into his. Sammy isn't usually in my bed in the morning but he had a bad dream sometime around 3 am.
 Twenty minutes after Daniel left I heard Sammy getting up. If you have ever seen those old war movies with the sirens and lights flashing then you have a pretty fair description of what was going on in my head.  My jaw was clenched and my entire body on red alert as he padded (thumped really) and I said softly and gently and happily "Hey Mister"  Sammy whispered back "hey soul sister aint that mister mister on the radio, stereo" as he climbed in beside me and kissed my nose. I continued with the next line for him ( I am a sucker for music ) and his eyes got really big. the conversation went something like this

Sam: do you work at my school?
Me  : no Sammy
Sam:  do you have another children at my school before?
Me   : no Sammy
Sam: then how do you know that song?!

apparently they sing it at school during morning meetings sometimes. That and We Will Rock You. He is also learning a new song about belonging together.
I really do love this school. his principle is such a gift to those students. I watched her greet every single student by name as they got off the bus in the morning.

We currently have a vote coming up in town to build a new school and combine the two failing, dilapidated, old schools into one newer school with therapy rooms (rather than no rooms now or closets) I just hope and pray we don't loose that small school feel. It still wouldn't be more than 400 kids total, but right now we are only half that at the school. Plus the issue of Sammy going to another school for third grade while they build the new school.  I don't even know if that would be a good idea

So today has started with sunshine before the sun has even gotten up. I'll take it!

Words for Sammy

My mother wrote a sweet poem for Sammy on her blog  Nanni's Notes  It's been hard on all of us dealing with autism here. It made me think. I don't know that I have ever written a poem or letter for Sammy.

My darling Sammy When you were born
placed in my arms cuddled close to me.
I saw for a second everything you would be
all the promise in your tiny eyes
I watched you in the nursery
all the babies around you were crying.
You my love, were content and quiet
How lucky a mommy I am
To have such a docile child
I watched you grow and held you close
You nursed so well.
You ate quickly never looking up
How lucky a mommy I am
To have such a focused child
We giggled at your quirks
and smiled at your focus
I watched you climb and toddle
so much more interested in movement than toys
How lucky a mommy I am
To have a child who entertained himself
You were learning and mumbling
You spoke slowly
but you spoke
You were just more focused on going
moving. running, jumping
How lucky a mommy I am
to have a boy who is so able
You stopped talking
You sat alone
Lining your trucks and blocks up
color coded

Your words disappeared
your smile went along
You screamed, you cried
where had my little boy gone?
We fought against the demons that followed
we struggled against an unmovable force
More discipline, less discipline.
more limits, less limits
nothing seemed to work
You stopped and so did our world
You railed against something I couldn't understand
then the words the doctor spoke
shattering me
your son has autism
lost and whirling
out of control
asking What can we do
being told nothing
and going home broken
embarrassed to tell my friends
with kids who really had autism
The doctors must be wrong
mistakes happen
not my son

For years We fought back
therapy at home.
therapy at school
speech
sensory
food
nothing was simple
everything hurt
restraining and holding
rage and disappointment
No way out
The sun did not shine
We fought out from under the snow that had fallen
we woke from our slumber
fueled by anger and fear
I wanted my boy back
he was just within my reach
the words came slowly
quietly at first
so less tormented
so less frustrated
he whispered I love you
what a lucky mommy I am
to have a boy like you
no matter what moments bring
no matter the struggle
I am so very lucky
to have such a wonderful boy

6 feet of snow

I feel like I've been buried alive and I am barely breathing, stuck under six feet of snow with no clue which way is up. I continue to claw at the ice until my fingers are numb and bleeding and all I have managed to do is get lost further in the snow.

Sammy during the spring snowstorm in MA

That's what this week feels like. I can't breath, I can't think... I feel like I am drowning. I feel like nothing I do is right and I can't win. It's time's like these that I wish I had a sign on my forehead that said "I am NOT as bad a parent as you think I am" Even though I don't really care what anyone else thinks, I still care what everyone else thinks. It's the same mechanism that keeps me from going outside in my underwear or picking up my son at school in a moo-moo. I can tell you I don't care until I am blue in the face, but I do care. I desperately just want someone near me that gets it. I am tired of feeling isolated and alone and frustrated when Sam lashes out at me in the middle of a store. I just want someone to get me , to understand how much this sucks. I want acceptance.

I feel lost in the ether, floating aimlessly. My son is very verbal and if it weren't for the behaviors he would be considered by most "high functioning". I feel like that label discounts how much he struggles ,how hard it is for him every.single.day. Sometimes I feel like we don't belong in the autism community because Sammy can often seem so freaking normal to people who don't get it. I have friends with completely non-verbal kids, kids still in diapers at 10 , kids who don't even acknowledge when their mother walks in a room. They seem to have it way more together than I do. How do I go to them and complain that I'm struggling?

So I don't. I sit here and I write.I fight the lump in my throat that threatens to bubble up when I speak. I am resigned  and beaten tonight. I sensor myself in the world and deflect the stares I get in the store when Sammy begins screaming.  I just continue to sit here and write.

SPD ~ Sammy Progress Derailed

Sammy is  a sensory seeker . He fights for them , finds them, abuses them. He crashes and whirls into everything around him so much like a tornado that it often leaves the rest of us dizzy. He is loud , he hates clothes, he stuffs his mouth full of food at every chance. He picks at his skin until he is one giant scab.   He gets OT in school and home is a sensory lifestyle. Heavy work like lifting back packs with books and moving the table are favorites here. Sammy loves mashing potatoes and vacuuming and he loves water. He wont swim but if the sink is full of water he gravitates towards it. Sammy crashes up and down the stairs , into bed, into the couch and into me. Could I stop him, yes probably but instead we redirect him to crash and bump and bang outside. I have given up the hope of nice furniture until he is much older. Sometimes people don't understand when they visit and will wonder why we don't try to "control him better". Even though he seeks sensory input he can easily become overwhelmed and anxious. It is like a fuse being blown because of overloaded circuits. There is no warning, no flashing red lights, nothing. It's like being caught on the tracks with a train coming. That is when he hits and lashes out or yells and screams or becomes abusive to himself. Those moments are so hard on him... and me.

It took a while for the kids in the neighborhood to understand why he acted the way he did. We had a bumpy road the first year. Thankfully the kids around us are just fantastic. One little girl helped him get his work done. They keep an eye on him when they ride the bus and explain things to him carefully . The other little girl is so very forgiving and sweet to him. They all just love Sammy and they all have fun together. We are lucky. It seems kids often "get it" so much faster than adults do.

Sometimes the neighborhood kids come over while we are having sensory play. Giant bowls of rice or ooblic, finger paints and play dough. They all love it and it's refreshing to see Sammy with his friends having fun.



The bus however has become a sensory nightmare for Sammy. Ideally he should sit by himself and in the front. The bus has become over crowded and Sammy ends up sharing a seat. The noise level, the chaos, moving and having someone touching him all create disaster. Last week he hit a child across the face on the bus. He reacted without thinking and just smashed the poor kid. I am mortified. I feel guilty. If he looses his bus transport I will probably end up fighting for special transport. I hate to do it but there is o way I can possibly get him to school in my van myself when he is combative. The principle understands where I am coming from and we have spoken about this before. Her job is to keep all the kids safe not just my son. My job is to make sure that we find what works for my son. period. I am glad we have such an awesome school system here and I hope it wont get ugly but you really never know...

For now Sensory issues derail him daily and I honestly can't seem to help him most days anymore. I just feel lost.

Tell me about your sensory kid. What do you do to help your sensory kids in tough situations?

free falling

It seems we are free falling here Complete chaos and uncontrollable anxiety with Sammy tonight. I guess it was my fault. I changed the routine and it messed him all up.Yesterday Dan was home which has changed the Earth's axis.  You see part of the wrinkle in our universe is because Daniel had a tooth pulled and is mostly out of commission. Daniel usually takes AJ to soccer on Thursdays, however Dan couldn't drive tonight. I really had no other choice. My leaving was not acceptable to Sammy and he began to get edgy as soon as I left. Moments after , Tyler left the room Sammy was in. This left Sammy alone. Sammy has developed this weird fear of being alone, he can't even go in the bathroom alone sometimes. When Tyler left him to put away a toy, Sam lost it. He ran after Tyler and attacked him. I arrived home about an hour after I left to chaos. As soon as Sam saw me he began to settle, I did have to intervene to save some glass angels and to protect Nate . Suddenly all was well and the storm blew over and Sam sat to make me something cool.

It's so hard watching your child chased by a demon. To see his sweet face tortured. To know he just cant free himself from all the confusion and fear. I am powerless.It may be time for us to consider medication. I'm just so scared. How do I make this decision?