He does not call the equipped...

He equips the called. We hear this a lot in our circle. I'm frustrated and here is why. I feel ill-equipped I don't feel like I have the necessary tools to raise Sammy some days. It's my pity party and I will cry if I want to. But I am humbly reminded in these moments the problem is not with Sammy. He is perfect and in God's eyes just as he should be. the issue lies solely in my lap. I don't know what I am doing

I hear this and remember, he does not call the equipped. Obviously he called me. In a loud and earth shaking voice. It scares me to be trusted with such a monumental task. He is amazing and I am blessed. My help comes from the Lord. I cannot do it on my own. So I humbly beg you Lord to watch over me and help me find the strength to carry my cross. you have trusted me with something that not everyone is trusted with. I don't want to let you down. Help me praise you Lord, in my own personal storm

got the fever for the flavor of a pringle

Sam with a fever on Monday of 103 was more coherent than any other time in his life. you see when Sammy does not have a fever he is like a pringles chip. They taste good, come in different flavors, aren't as bad for you as other chips because they have less extra grease and fat. They are light and airy and come in a can. When he has a fever he is much more like a regular chip. real honest to goodness potato chips aren't formed all into the same shape, they taste even better even if they aren't as good for you. They come in a bag which makes you feel like you somehow got more even if you didn't.

stay with me here

When he isn't sick, he is a pringles chip. he sounds the same and acts the same. his words have been given to him and rarely do you get something you have never heard before. Everything revolves around star wars Jedi and spider man , its really all just one formed chip. Granted being healthy and not having a fever is the preferred option, what fever seems to do to his brain is amazing. His conversation healthy is light and airy and sticks to the surface. He still only holds 2 conversation vollies.

But with fever he talks about everything , he becomes real...3-d. he sings songs without prompting, tells me what he likes and wants. smiles and even held a 9 volley conversation. he talked about the sky and the sun. He asked where clouds came from and then understood the answer. Before anyone jumps on me for the "real" comment please understand I am not saying he isn't a real kid otherwise, he is. It's just the difference between flat Stanley and Muppet's 3-d.

I love him more than anything and I obviously want him healthy but I do wish I could keep those pieces of him closer.

the joys of life

There truly is joy in every moment of my life. I know I use this mostly for Sammy but my oldest son is on the spectrum as well. Tyler has Aspergers. He is an amazing thoughtful young man with a quiet and calm sense of self. Up until a few years ago we never really saw him express emotions.

In fact in second grade teachers thought he was depressed. He made the same face, happy or sad, it didn't really matter. Once we realized where the deficit was we worked on it.

He smiles a lot these days. He is 15 and so much fun to be around. He relates so well to Sammy and most days is his favorite person.

We took the kids to the park. we brought a parachute with us. wonderful things happened. Sammy's language was amazing. Tyler had a blast and I giggled as I watched the chaos. I loved every.single.moment.

the mornings

Let me start by saying boys are gross. little boys eat sleep and breath boogers, dirt and all sorts of other nasty things. in fact I mean that both literally and figuratively.So this post is gross...sorry

Mornings here are a bit much with Sammy. He hates getting dressed and his new issue...boogers

yes boogers. He wakes up today at 6 am, informs us he peed his pants and then starts flipping out. 15 minutes later i have ascertained only that its something that is hard and stuck. 10 more minutes and i have now figured out that it's a booger stuck in his nose. Its hard and its making him craaaazy!

I help him (read=fail) to blow his nose. I of course do it wrong and yet again chaos ensues.

my husband at this point left the room so here is Sammy, naked (peed his pants) writhing and screaming on the bed beside me. I'm only 8 days post op today so I'm still sore and fragile.

Daniel did come and rescue me only to have Sammy then switch gears to watching TV during breakfast. Breakfast and videos are never an allowed thing. Sammy thinks for a minute and then tells me "that is just crap mommy total crap" Crap, i wonder where he got that from...lovely!

45 minutes later and Daniel is battling him over underpants and t shirts. Sammy is screaming about hating school and wanting to go in early, video games and television. The list is endless.

his bus will be here in about 15 minutes he is playing his DS and calm. thank God he wont need to be carried to the stop. I cant do it.

we did have one fantastic moment today. I slept in a tank top since it was so warm. At some point this morning Sammy says "You might want change you shirt mom" when I asked him why, his eyes got big and round and his face lit up as he smiled at me. His little hand was twitching as he quietly told me in a hushed giggling whisper "A'cuz my want tickly you!" Those windows into his thinking, those moments make the hours of crap and anger we dealt with today worth it.

Sam the ninja

Sam thinks he is a ninja. He's a backwards ninja with his pants on his head. Life is always interesting in our house. The insight Sammy shares with us is sometimes the largest ray of sunshine anyone ever could get. he shines like a new penny in the sunlight. today happens to be one of those days. I'll take it.






He also got sick at school today. He has been a puker all his life. He has a hair trigger stomach. After changing his diet it got better. spring is the time though if its going to happen it does. He's sitting on my couch in his underpants playing video games. He's happy and well.

He told me all about the leprechauns today , what an amazing imagination. maybe ill get him to tell me more again later. I do love listening to him talking to me. it took so long for him to find his words. I pray they never stop. His voice (even when he is angry) is like music to my ears a soft song on a summer night or a ruckus wind that clears away the clouds. Again. Ill take it

Stolen Pictures

Those of you with children who were diagnosed after 2 or 3 years old. Have you looked back at your photos? The photos you took before the day autism changed your life? For some of us that day was an answer to a silent , or not so silent, prayer. Some of us were shocked and terrified. Either way we had answers at that point, whether we wanted them or not. There really was little choice at that point. I moved through those days and weeks in kind of a stupor, but I got through them.

What still chills me to the core is the way autism has crept across all my photos. I look at photos of him before 9 months and I see a little boy inside his eyes. He is in there ! His windows are open and I can feel his presence. I remember him from so long ago. The child who babbled and played peekaboo. The boy who loved mommy and daddy.

From 9 to 18 months something changed. At first it was slow, little things that just didn't make sense. A child who suddenly became aggressive and angry. He stopped making word sounds I stopped being momma and became a grunting guttural sound. then BANG like a gunshot in a crowded room, everything was gone.

I lost my little boy at 18 months. I see that now pouring over his baby books and reading the entries into his journal. I didn't see it then. I still thought things were OK. I believed if I loved him enough those nagging doubts would go away. they would silence themselves in still dark water and my shining son would be fine.

Until the day i looked back at his photos. That day shook my being to the core in a way that nothing else could. " I'm sorry your son has autism, there is nothing you can do" didn't even have the impact my photos did.

looking back I see a little boy with fading light, changing intensity, disappearing self... and I missed it. I missed it all. I put my blinders on and trudged ahead as if my world wasn't changing. Autism crept in and stole my photos of the vibrant boy I thought I had and replaced him with a shallow imitation of the boy I knew him to be. It stole my son away from me and I have fought so hard to get him back to me. He may never be the same and really, who wants that? But I need to see the windows open.

I know now there was something about Sam from the beginning, something...different. He never cried in the nursery when all the other babies did. He never looked at me when he nursed. He never slept. His cry was always hollow. He always sounded strange when he made noises. I know now that those were signs I missed, ignored... It hurts me. I failed him.

But would anything have changed if I had kept my eyes wide? I have no idea. I know that those pictures register guilt, control, and culpability for who my son became. I am his mother. that makes it all my fault ...right?
I look at him today as he gets ready for school, green eggs and ham day, all dressed in green jammies. Wide eyes and a big smile as he stares past my eyes into my hair. His eyes darting everywhere as he smiles and flaps. I brushed his hair without incident today. His teeth never got brushed and he hug kiss snuggled me from the door. His windows are closed today so far. I hope he comes home with some fresh air for me. After looking at his photos I need it

a day with no sparkles

Today was rough. I am just getting over a nasty bug and honestly feel terrible. Sammy picks up on that, sort of like the way a dog smells fear. So while I tried to lay still and get well, Sammy has brought complete havoc on our house. puddles in the bathroom, scissors to his pants, sharpie to his baby brother. yeehaa ! I am greatful my darling husband is so good with sammy. Sammy has informed me that puking is (usgussin) disgusting , jammies are no fun, and he hates his life. Once I became mobile I found random pickle deposits , socks everywhere, and even some random sticky goo smeared on my kitchen floor. it's a lost day, and sometimes that has to be ok.

Welcome Back

Things have been good here. So good that I haven't been writing here. We have started Kindergarten here. What an amazing journey! Yes we still fight daily when it comes to getting dressed, brushing teeth and hair, and eating breakfast. I still get beat up most days when he gets off the bus. But there is something more these days to Sammy. He has this soft sweet energy. He makes me smile and looks me in the eyes more often than not. I always felt deep down that autism took my boy. That we had lost a piece of him that would never be recovered. But some days I see him. He peeks out like the sun behind the clouds. Sometimes he stays for a chat. He tells me things I never think about and notices things I don't. He smiles with his whole face and cries with his whole heart. He amazes me!

Its been 2 whole years since he was diagnosed. Christmas is so hard because of it. It is the reminder of what we struggle with. I see children younger, or close to his age. I am amazed at the difference of where they are and where he is. I have no clue if he will ever catch up but for now he seems to be a fantastically engaging child with a 3 year old mentality. I love the Sammy we have found. Please God let him continue to visit.

the birthday boy

Today my angel boy turns five! FIVE!
when the heck did that happen? He had an amazing day today. He came out with me to a party, played all day with the girls and had an amazing time. he behaved so well I could hardly believe it. then he looked at me with his sad face and asked where his cake was.
We had a cake for him and party on the 9th of the month since his memere was here. he was sad he wanted cake and presents today too. so we did. I was so happy he was aware and asked. he was so happy. God I love my children, my family, and I feel so blessed

a star wars cake?

birthdays here pose quite the conundrum. Sammy cannot have gluten, artificial colors, flavors, or preservatives and my dad cannot have chocolate. So what to do what to do. I decided Ice cream cake was a good idea. Carvel was out of the question since they have all sorts of bad stuff in it. So... I made an ice cream cake
strawberry ice cream, vanilla ice cream and sliced strawberry center. I coated it in whipped cream and froze it in stages. The next hurdle being how to decorate it
he wanted star wars... OK easy enough without coloring right... ummm
i found some action figures and made a fight scene he loved it
here's the cake

Sammy Spazzy and the Spiderman Suit

So hubby is working mandatory overtime and I have a class tonight for my job. OK no biggie. except starting this morning Sammy has been a spazz! He put on his spider man costume and began screaming. Those of you that have an autistic kid understand that guttural scream i am talking about. the one that sounds like train brakes and chocolate pie being lit on fire while a moose dances the tango during mating season. Yeah pleasant really. It is one of those sounds that only a mother could love, and even then not so much! 12 minutes, enough to make me want to run away. Mind you I had just worked a 9:30-6 am shift came home and was trying to get ready for church. I knew it could get ugly.

he was OK at church only tried to run out once causing me to barrel after him down the side pew and almost smash into the usher. he also collected all the books in the first 3 isles and made some lines with them. He then placed his head on the pew fabric and ran on his hands and knees from one side of the pew to the other, the whole time static boy kept his head in contact with the velvety fabric.

We managed to leave church with mnor incidents and nothing more than a shoeless boy with static head

It was a dark and stormy night

Or in this case a dark and stormy morning.*enter dreamy sound with slow fade into a flashback*
So it all began yesterday at summer program, Sammy ate play-dough. For those of you reading this ( an I assume people are) play-dough has gluten in it. Giving Sammy gluten is like setting off a time bomb inside of him. He does not have celiacs, however, a lot of kids on the spectrum react badly to gluten and even casein. Sammy seems fine with limited dairy but gluten is an all out NO!
It happened though even though they were really trying to make sure it didn't happen. So today you could see in his eyes that it was going to be bad. I let him wear jammies to school but managed to talk him out of snow boots. He did however wear his pirate wellies. Good compromise! He wasn't thrilled about going to school but managed to get in the van without major melt down. A few short screams that his pants made him crazy and a minor flap session over his pants leg that came out of his boot.
We get to school a few minutes too early so we wait in the car.Immediately he starts bouncing around the car and wanting to get out. It's raining here today and I really didn't want to stand in the rain. I kept him distracted as best i could but then another child was in view so out of the car we went.
Everything seemed fine until the teachers came out and I saw he had his brothers harry potter wand (also known as a weapon in Sammy's world) So i had to remove it from him. Yup that did it. Put him right over the edge. Sam hid under my shirt and as I handed him over to the teacher he started punching and kicking. I walked away because I know I only make things worse on days like today. I sat in my car and watched the poor teacher struggle to get him in the door, but he went.
I hope he has a better day then he did morning.

happy fourth

my fear

i am so scared this will appen to sammy. He has been so close to it. Impulse control is not ihs strong suit. he has run out of the house more than once

http://www.fox23.com/news/local/story/Autistic-Boy-Hit-By-Car/6-4OiVt-VUGSQTEq_Si_jQ.cspx?rss=77

some things never change

I was watching Sam. I tend to do this quietly so that he doesn't notice me. I like checking out the way he looks at the world. Always at the ready with a camera to find that one sweet moment. Sometimes things are funny, sometimes sad, and sometimes just flipping weird. But no matter what it is Sammy. Sammy is unique onto himself, he sees things like no one else I know. sometimes if I am really lucky he lets me in. Those soft sweet, sometimes crazy moments are worth every tear. Nothing is without meaning anymore, sometimes it's just not the meaning I thought it was

today he caught me. he was watching the fan go around and around. He has loved fans for as long as i can remember. In fact it was his first sign. He would sit on the floor and wave his hand in the air in a circle. it took me a week of much frustration to figure out what he was doing. Of course this was back before we lost him. Before autism became attached to Sammy like a large birthmark. we have learned to accept Sammy in his entirety and have been able to adapt to the boy he is. We grieved the boy we thought we had and have learned to accept the one we got. every step of the way only loving him more and more each day. we are truly blessed to have him. I like him just the way he is

In this video, my husband was in his world checking out the fan too.

that's my story...the end

melt down!

So things have been great with Sam lately. He's using his words and asking for things he needs. They really are more of a statement most times than a question. If he wants milk he will say "I am thirsty, for milk" rather than "can i have milk please?" either way I get what he means. Well, last night, no words ... nothing just screaming! he wanted a juice box and not just any juice box one from his backpack. .He let himself get so thirsty that he flipped out. Poor guy.



BEFORE JUICE BOX







AFTER JUICE BOX












He slept in his tent yesterday in my living room. He even told me "mom, you snuggle me!" so I did. he gave me a pillow and put his head on my chest.kissed my neck and told me " your smell pretty mommy, My just love you" totally mae my entire day!

Sammy Has learned... so have I

He has learned so very many things over the past few months.
- his people have eyes now when he draws them.
- he has learned to build castles with blocks
- he has learned to say I love you
- he has learned to sleep in his bed
- he likes to color, he may not do it well but he does it
- he has learned to have authentic conversations
I am so proud of that young man. He has come further than I could have ever imagined. He was sitting at the window counting raindrops each one after ten being 65. 28 minutes of sitting there in the window counting rain drops. Now he is laying on the floor rolling back and forth. I don't fight it the way I use to, I don't grieve the way I use to, I don't feel the way I use to...

because of him



how can you not love this kid
I felt hopeless when we found out. I feared the future and the past, I had horrid guilt, and cried all the time. I freaked out inside every time he stimmed that i would never get through to him. I cried when he ran circles in the house and couldn't sit still for a second. But those things that made me sad have become my joy. Sammy is just Sammy who happens to have autism. He just happens to think in ways that may not make sense to other people. That is OK.

he is who he needs to be and to try to "cure" him and rip the autism from him seems so unfair. It is woven into our lives. Don't get me wrong I want him to be able to live without insane frustration, I want him to live and succeed. But I don't want him to change. I like him the way he is, I love him for his weirdness, and I LOVE seeing into his world when he lets me.

wordless wednesday

pics

good days

Sam has been so fun and sweet lately. I visited his class 2x this week. He even said he was so glad I was there. I just love that boy. my keyboard is not working so I will just post pics

sammy made people!look they have eyes!