Wednesday, November 26, 2008

stim team


that is who we are today.

members of the US STIM TEAM

sometimes, i forget. I forget he has autism. i forget he isn't like other four year olds. I forget how young he seems to be inside his head because he has made so many huge leaps lately. he has changed so much I think he is normal. I get comfy and forget he is normal, but normal for him. I forget he has autism. I forget that every minute of sharing this world with me is work for him. I forget how difficult sensory information is for him. how hard it is to listen to sounds and see things that don't make sense. he has no baseline for any of it. that in itself is fine. my problem is that at home, it is a safe and secure environment. his own little bubble where I can control the things in his life that are scary. today i forgot. i let my guard down. and like every time before this, reality brought me to my knees. watching him at the therapists office playing with the particles of dust in the sunlight, then screaming because the heat turned on abruptly. he was hysterical. I could not console him . he eventually calmed down. he spent the rest of the day in either a video game haze or stimming. he loves the bristles on the broom. he takes them out one by one and plays with them. soon I will buy a new broom having thrown this one out strand by strand. flappy, spinning, toe walking Sammy did have a tough day.


BUT...


one moment better than any other I have had in a long time. he hugged me around my knees. he does this often. runs into the room barrelling at my knees without warning. he has to hug me right then and there. so he does and says to my kneecaps in his melodic almost not there voice, the voice he uses when he is in his own world, "i love mom sweetie,sweetie loves mom,love mom" kissed my leg and ran back to his video games. i think i can understand where he was in his head. I hope i can, but even if I can't I have to believe he loves me. it's all that keeps me moving forward some days.


My cousin Bianca has aspergers. I love this little girl dearly. and she adores Sammy. my uncle and I laugh that Bianca knew Sammy was autistic even before the rest of us. she told me he was a robot like her. She was one of the few people that Sammy enjoyed being with. I told him this morning that she was coming over tomorrow for turkey and he asked "my hug her? my kiss her?" I explained that it is good to ask before he does. he nodded like he was listening.


I remember when my dad suggested autism was Sam's issue. i scoffed thinking he was crazy. I mean really what were the chances that 2 out of 4 of my children would be spectrum kids? seriously. who the hell thought that one up?

Sunday, November 23, 2008

flash backs

I watched some old movies today of Sammy. They were just over a year old and he was in the bath tub. 10 minutes of Daniel and Kayla asking him questions trying to tease out answers. his only words -"ride bike" he looked up only when sprayed with the water. stimming continuously on the bubbles in the water. he mumbled something about the water bubbles to no one but himself. silent, stimming, and lost in his own world..

today.
he comes to me and climbs on my lap. hugs me close and tells me he loves me. whispers in my ear "say it louder, i love you Sammy" i know now that is my cue to hug him close and tell him softly "mommy loves you Sammy" to which he responds "thanks" he begins his monologue about star wars and how his games aren't working. he startles me by attempting his sad face to show me how he feels. his eyes still don't quite follow the expression. I ask him what he wants to do and he tells me he wants to paint. we draw and color and paint together. he chatters on about star wars and continues in our world for the most part.

there are still moments when he retreats, where I cant reach him. those are becoming less and less. he smiles and talks and can now predict the schedule of the day. he has come light years from where he was before. it amazes me to see it. it makes me so proud of him. he may never recover, but he will function and he WILL be happy. thank you Lord for that. thank you Lord for the wonderful blessings he has brought to me and thank you Lord for challenging me to help him and allowing me to succeed.
video

Friday, November 14, 2008

my children are elves

nate with my pastry bag over his head, which gave sammy a great idea!



i love love love love this picture





http://dallemienonnecucina.blogspot.com/

cooking blog!

Wednesday, November 12, 2008

i have decided i want to make my own cooking blog seperate from sam's. im trying to com up with a cool name

any suggestions?

Sunday, November 9, 2008

emotion practice

angry sam-he's an angry elf



sad sammy- I swear when he does this I want to buy him a puppy






directive perspective


having a SN child changes your view on the world, not in the way one might think. Sure it changes how you look at the economy, schools, presidents... everything really.

But it is the little things that are magnified and brought into sharper focus. those glimpses into the neurotypical that knock me off my feet and cause tears to sting my eyes. every single moment is so powerful when you watch it from my point of view, which is becoming the same point of view as a wonderfully handsome 4 year old named Sammy.

spiders become giant and dust particles float like jelly fish. the clouds in the sky make him want ice cream and the rocks on the ground are cool in his mouth and sandy on his teeth. i watch him as he discovers in his own way the world around us. his wonder as he looses the moment following a spider across the floor. 20 minutes later confused when he becomes aware that mass is over and it's time to go. the delight he takes in sitting on the window sill so he can see the jelly fish in the air. watching the dust dance and fall around the room in the sun beam. it's purely magical for him.

the noises that overtake him, the ones we enjoy, the sounds called music. he covers his ears and pulls at his eye lashes. his hands moving a mile a minute in the air. speaking words he cannot express "get me out, let me go"

his body rigid against mine as I hold him for the millionth time, because once again he has hit me and is loosing control. I don't know the trigger. I can't find it. but the threat to him was real, enough for him to react out of anger and fear. he doesn't want to hurt me. in fact i don't think he even sees me at this moment. I must be the safe harbor, i am the comfort zone.

i need a comfort zone by the time i am done.

some days it breaks my heart to watch him lost in his world, until I step back and watch the world from that amazing view of a four year old boy with autism. it becomes magical ,inspiring, imaginative and sometimes very scary and almost always exclusionary. those quick glimpses are amazing when he lets me in... when I fight myself into his world. trampling the flowers sometimes and never quite as delicate as I hoped to be.

this young boy with the big blueberry eyes and white blond hair. the child who has learned the "sad face" the child who hates me and loves me, both because he truly knows no better. this boy...is my son, my world, my hero, my guide, my inspiration. he is my Sammy. and the perspective of the little things is so different from behind his eyes. the little things really do matter. only now do i realise how very much

Monday, November 3, 2008

happy halloween

kayla as the raver party girl
dan is so potent he knocked himself up! (better him than me)

jack skellington


scary fairy



Calvin and Hobbs

















sammy the Jelly Fish. he wanted to be "sqishy" the little jelly fish from nemo. I did my best and he was happy

stunning and amazing...


sammy has a habit of telling me he hates me. i don't take it personally since weeeellll, he hates everything. soccer,bed,cake,muffins,cheese,butterflies and teddy bears... who the heck hates teddy bears and butterflies? My son apparently. every time he gets upset that is the phrase he uses to express his pure disdain for the item at hand. so Saturday he tells me he hates me. I asked him to follow through with his color wheel, it's kind of an ABA thing but not really. So he gets mad and tells me he hates me with as much venom as a four year old can muster. it went something like this

sammy*I HATE YOU* at the very top of his lungs

mom *when you say that it makes me sad. it breaks my heart. my heart is broken and mommy is sad*

sammy*mommy heart broken?*

mom *yes sammy, mommy's heart is broken*

sammy * i give you sammy heart.. it's fixed*


holy shit! way to go sammy

who would have though that was even possible. a moment of clarity ...... all from i hate you