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?