Sunday, July 12, 2009

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

Wednesday, July 8, 2009

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.

Saturday, July 4, 2009

happy fourth

Friday, July 3, 2009

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

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

Thursday, July 2, 2009

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.



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!

Wednesday, July 1, 2009

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.