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.