So here goes! Things Aoen is allowed to do her but her NT (neurotypical/ normal) siblings werent allowed to do at her age or even now! 1-Jump on/over furniture/toys/rocks/ stumps/anything two little feet can fit on that has height. Shes a sensory seeker. Laymens terms aka adrenaline junky. *Yes that includes people. *No fear but shes agile. *Ive learned breathing techniques *The kids have been taught not to let her see or hear them cry. *She is rather fast at grabbing supplies to clean up blood. *I wish I was kidding. 2-Spinning. Everywhere. *Especially if there is music, sometimes just to spin. *Move everything and let her go. *Stop her? Never. *Shell get dizzy? Sick? Hurt herself falling? *Again move everything. 3-Waving her hands in your face, her face, at the air. *Happy hands! *Maybe not always but we try and make it positive. *She cant help it. *Im not going to make her feel uncomfortable or self conscience. *Embrace the hands. *Learn to bob and weave. 4-Wink at random people. *Awww shes flirting! No shes not. *Its a tick or a stimulation response, we arent sure. *We ignore it or like her hands, we embrace it. *BTW If she was flirting youd know it. You become George. You dont want to be George. 5-Sleep with Mom or big sister. *Weve progressed from crib(she jumped out, so down the crib came), a portable crib(Up and out. No point) to a big girl bed 75% of the time with big sister 25% in big sisters bed(same room) and 100% mommies bed when I have her at night. *(ps. I love it.) 6-Scream. *The movie stopped, iPad died, she wants juice, she wants to play, she doesnt want to play, she wants up, she wants down, shes mad, shes happy or shes just screaming to scream. I think you get the point. *WHY?! You may ask do we let her scream? *Shes COMMUNICATING AND INTERACTING! *Sorry, soft voice. *As an autism parent I take what I can get sometimes, ok most of the time. We do ask her to try and use words, quiet words or at least quiet down but we dont force her to be quiet. Ever. *I cant say Im not jealous. I could use a good scream on a daily basis. 7-Wear makeup in public before middle school. *A lot of makeup. *She loves makeup. *The bolder, the brighter, the better. *Weve learned to hide it or its hers. *She feels pretty AND its pretend play! *She applies the most beautiful lipstick facials youve ever seen! Specialty is red! 8-Play on her iPad for hours, in the store, Dr office, in the closet. *Nobody likes tantrums. Up that to a meltdown and it gets real. Life sucks. For you, for me AND for her. *Its distracting and she has apps specifically for her issues. Like learning facial expressions and matching games. *Bonus if she wants to watch Mickeys Magical Christmas over and over and over so be it. 9-Complete control of the TV. *We all suffer. Except her. And maybe Justin. Again, meltdowns are no good. *Did I mention I love her iPad. 10-No discipline. *Wait.... *No, thats right. *We guide her, mainly on her terms. *Shes learning, again its a slow process. *Ill give an example. *Once I smacked her hand away from some glass that broke and that she kept trying to touch as I was picking it up. I said No! Aoen! Bad! Owie! No touch! All the simple, direct words to no avail. She reached and I smacked. Ill never forget the look on her face... *She looked at me like mommy why did you hurt me.... *So, thats right. *No discipline. 11-Breakfast, lunch and dinner. Anytime, anywhere. *The chicken has red on it? Nope not having it. Ok. *Jumping out of the highchair? Ok no more highchair! *Sit over here. *Nope. *Ok anywhere. *Just eat. *Thats all we want. 12-No potty training. *Ok we do some. *Well, when she wants to participate we go along and make a big deal. *We dont try to hard though, we have accepted shes not ready and its ok. *Did I mention for her to want to participate in any form of potty training she has to be naked. *Yup. See my dilemma. *Public nudity is not the answer to my diaper budget. *So we wait until around 4. 13-Calls other people mamma. *She says mamma! *She started a couple months ago. So proud! 14-Tells me no. *She says no! (Her first non prompted word) 15-No utensils. *Hands were made for food. Picking up, stuffing mouth, playing with and squishing! *Shes eating. *Hopefully. 16-Ignore us when we talk to her. *Well, this is hard because sometimes she just doesnt register that youre talking to her, others she knows. *We know she knows. *When she knows and chooses to ignore us thats typical twos. *Ok let me repeat, typical twos. *Ok once more, typical. *Woohoo! *Anyway, moment of glory over, when I absolutely need her attention I go all loud, snappy, clappy, hey you Im right here!!! On her. *Madie hates it. *Its effective. *Sometimes. 17-Destroy, injure, kill. *Shes learning, its slow. *Disclaimer! *Only bugs have suffered death. Most perished in the beginning of her bug phase. *She doesnt understand action/reaction very well. So a lot of explaining happens. *A lot. *I honestly think its more like I overreact to her lack of reaction. *She tunes me out at No Aoen! Or Oh no! Aoen! So beyond that its all me. *Alone. Yet not alone. *This is where my useless, I mean useful, snappy, clappy, hey Im right here!!! Comes in. 18-Do something, anything, over and over and over again. *Shes learning to transition and so are we. *Distraction is my favorite word when repetition comes to our house. *A person can only sing itsy bitsy spider so many times before your hands get tired. *Actually, its my favorite word for many things autism related in our house. *Lovely word. *Distraction. Summary. Aoen and her autism are our lives. Package deal. We accept defeat, we praise every achievement. We let her help us understand her world and when she has a moment and wants to understand ours we snatch that moment up and feed it what ever it wants, when ever it wants, where ever it wants. We dance with it too. Maybe someday it will stay, maybe not. The moments we share in her world opens our eyes to the wonders of bugs, no fear, sensation of touch, of sound and most of all simple freedom. You see shes not lost in her own little world, her world is vast, spacious, busy, yet calm. She is the ruler there, its here she is lost. I use the word guide literally. We are her guides into a strange world. Example, learning a foreign language isnt for everyone, we accept that but when she wants to try a word or two well be here to help. Maybe, eventually, shell be fluent. Again, maybe not. When she is visiting we do like anyone and make the most of it. What guide wouldnt! Lucky for us Aoen visits us frequently and when shes not we are there with her in her world, observing, waiting for our guided tour. Trust me, they are nothing like youve ever experienced! Well a short list turned into a novella! If you made it this far, thank you. From Aoen, Aoens Mommy and the 5 NTs. The NTs Destiny 20 (deserted us for our hometown in ca) Madie 17 (big sister aka Aoens in home nanny) Jakeb 15 Justin 13 America 11 The chosen autistic of course Aoen 2 1/2.
Posted on: Mon, 01 Dec 2014 15:08:15 +0000