” Autism and Custody and Family, Oh My!”
So it begins, my blog.
I am the custodial step-mom (we have for the moment full custody) of my stepdaughter with Mild to Moderate Classic Autism. I say this first because the reality is that no matter how much I want to separate myself from it, this is what makes up the majority of our life as a family and even as individuals. Our lives revolve around the various needs of “K” and the constant roller coaster ride that is family court. We are nearing the end of a 2 year (plus a day) battle for custody. I really hate calling it battle, it shouldn’t be that way and I really wish it wasn’t.
Aside from that, my Fiance and I have a 15 month old son together, so far he is NT “Neurotypical : Not on spectrum”, though he does have some stimmy behaviors with limited eye contact. This isn’t surprising because… well my Fiance and I are not exactly NT… oh yeah… you’re probably reading this now and thinking “Man, what a cluster F%$&”, I don’t blame you.
I display many traits that hint (more like yell and point and shout) to Aspergers, though I know in the new DSM, that term doesn’t even exist anymore, I don’t agree with that but well cover that later. My most obvious and bothersome issues involve becoming overstimulated, I can’t deal with a lot of olfactory, visual or auditory stimuli. My Fiance, we will call him “O”, is the exact opposite and we often trigger each other because of this. He has an intense need for auditory and tactile stimulation. He does this crazy loud hard clap that makes me feel like I’m getting stabbed by a 1000 needles, I HATE IT. While I veer away from all that stimuli, I do need a lot of tactile input and of course he doesn’t, some how though we make it work and well.
“K” is in early Elementary and is a lot like her father but more extreme. She is very sweet (unless triggered), loving and seeks lots of approval. She is a very stimmy creature and is always hand flapping, jumping, running, humming, singing, grunting or making other random vocal noises. Her communication is limited to immediate wants or needs that she conveys in one or two words like ” drink juice” or “watch movie”. We’ve tried different forms of communication but compulsions make it hard for her to use them appropriately. Sometimes I wish I could just take it all on myself, when she’s having a hard day my heart breaks for her and my brain wants to fix it “I’m suppose to make it better” but I can’t. To add to it she also has Epilepsy another diagnosis and treatment plan we had to fight for. She is though, doing well. She keeps making progress and feels loved, there isn’t much more I could ask for right now…except maybe some more stability for her and money to keep exposing her to life and different activities.
….That’s us (in an extremely condensed format)…