What is YOUR Autism?

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About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

27 responses to “What is YOUR Autism?

  • Shannon

    Our autism is currently (because it changes) – my son has picked out all his eyelashes and most of his eyebrows from anxiety. It is hanging on to the fact that he has ONE friend for dear life without smothering them. It is screaming meltdowns of rage in public. It is terrifying his younger brothers with his screams. It. Is. Loud. And. Jarring.

  • jess

    … all consuming.

  • Aimee Velazquez

    …a barrage of questions about what the blender, chainsaw, lawnmower, mixer, and leaf blower say, repeated over and over and over and over and over again in the same familiar linear succession. “What does the _______ say?” “Whirrrrrrrrrrrrrr!!!!!” It is chewed up orange Dunkin Donuts straws nestled between the seat buckles. It is ash blonde ringlets constantly brushed aside or tied up in a messy bun during sweltering heat waves. It is ear piercing screams of displeasure. It is sleepless nights and hours and hours of the Music Choice Light Classical channel. It is “hiding” in closets and under the covers fruitlessly because flapping arms and feet on a mattress and giggles always give him away. It is shuffling, skipping, and trotting about in circles in the living room. It is preschool YouTube videos and blue corn tortilla chips. It is rice milk and laxatives, probiotics and Benefiber. It is leveling exhaustion, but most importantly, it is joy. It is my heart beating in sync with his as he drifts into a dreamy slumber. It is my life.

    • Kari

      Absolutely beautiful…..just a really ‘soft’ way to explain how are children are. Sometimes I think people forget the softness of children and you completely captured the fact that they are still our babies. Wonderfully written. I wish you much love and luck; him, as well.

  • Katie

    Our autism is miles back and forth to therapy. It is fear of the bathtub, but wanting to walk straight into the ocean. It is pica. It is making noise, because eventhough he doesn’t have many words, he wants to be heard.

  • Lisa Gallegos

    I didn’t think it would fit in one comment box lol….but this is what autism is to me http://racersmommy.blogspot.com/2011/04/what-autism-is-to-me-letter-to-world.html

  • Fi (Wonderfully Wired Mum)

    Overwhelmingly exhausting, incredibly intense but also wonderfully rewarding :)

  • Jennie K. Diller-Daniels

    not sleeping through the night.doesn’t tocome in from outside or the pool. doesn’t eat enough all of the time. doesn’t like certain foods. slowly emerging verbal skills. hates her hair being done. loves school. likes to go out in public. laughs alot in spite of the melt downs. hates certain clothes because they don’t feel right on her. feels left out when she can’t go on the school bus because her mommy is scared for her on it even though there is a monitor. loves her brother and will give kisses and higs when asked and every once in awhile will give t hem just because. starting to get bashful for no reason now. can’t get her fingers to work for numbers right. when she does something funny or cute and when you laugh at it she melts down. watches cars, dora, little bear, toy story, land before time constantly. likes the computer and phone. actually listens well in public with little problems. carries around her raggedy mine puppy everywhere. figuring out after you put on her costume, to put her in the carseat and go for a drive and she’ll calm down after a little bit so you don’t go through 3 costumes again. loves to help to put dishes away even though she slows it down. wondering iif she’ll be able to be on her own or go to college, get married and have NT kids that will understand her. my reason for being.

  • Laura

    Our autism is constant everything…constant parenting, researching, reinforcing, worrying, fear, loneliness, wondering what if, jealousy of typical, waiting for the other shoe to drop, waiting for the next word, speding of money on food he will never even try and toys he will never play with, guilt, planning and choreography. Even if we have a good day knowing so many people in the same boat makes me have anxiety knowing they are having a hard time. I am lucky I have good sleepers because sleep is the only escape and even then doesn’t always leave my dreams alone. Just never-ending and exhausting. Yes, my kid is amazing but I feel like he is the ghost of the boy inside and I can barely see him some days and he can’t communicate with me and he’s just out of reach where I can’t get him.

  • Kari

    I look at my beautiful boy and wonder why no one else see’s the joy of his smile, the bright green eyes and gorgeous blonde hair while he giggles his amazing laugh? Why must they stare when he gets overwhelmed at the grocery store from the lights and overhead speaker? Is it so wrong that he needs to rub the tag in his shirt CONSTANTLY and screams when he can’t find it? So he can’t climb, go down slides and isn’t as advanced as most kids his age….he’s working on it. Neighbors stare because we have a trampoline outside AND inside and he is either on one or the other ALL the time. He likes to jump a lot. He likes to ask “Where are we going?” constantly, just to make sure he has the day planned out correctly…not a big deal? Anxiety, OCD, temper tantrums, less sleep than most farm animals. LOVES his sisters, and they have learned loyalty and amazing lessons about tolerance from him. I’m so proud of my children. Autism? Nothing I planned on, scariest thing in the world to go through, never realized how strong our family was and how much laughter can keep you going, even in your darkest hours.

  • Tired Mama

    Autism is….fighting. Fighting the schools to get the services he needs…fighting for a diagnosis…fighting for recognition among the outside world. Fighting my emotions when they threaten to overtake me. Fighting back the tears when I read classroom observation reports. Fighting to stay employed as a single mom trying to do it all. Fighting to keep my patience in check when my little guy refuses transitions or doesn’t sleep through the night. Fighting inside myself to stay calm outwardly constantly. Fighting inside my heart when I want to just give up sometimes. Fighting the desire to scream at well meaning people who just don’t get it…including old friends who won’t ever understand me anymore. Fighting to put one foot in front of the other, because the victories are worth it.

  • PJ Ruddy

    Oh I will most definitely will work on this one.

  • the jay train

    … scary because of the unknown. When I 1st got the diagnosis I had no idea what that meant on any level. I had so much to learn. I still have so much to learn. I’m a planner and I want to think long term but autism makes it hard because it’s so unpredictable. I never know what to expect from my son. Sometimes he melts down and sometimes he’s amazingly well behaved. Better behaved than my NT son. I want to have high expectations of him, but I don’t want to set myself up for disappointment. I want my son with autism to be happy and fulfilled and productive in life but I just don’t know what that means to him or how to help get him there. I want to be a good mom to my NT son and not short change him my time or energy. I just never know if I’m doing right by my family and that’s scary. Maybe every family or mom has those fears but I think it’s magnified so much more when you have a special needs person to care for. Autism is a teacher. It has taught me to be more patient, more open, more flexible and more understanding of everyone I see. Autism is not fun but it’s not the worst possible scenario either. Autism is something different everyday.

  • akbutler

    our little boy. I can’t separate out what is him and what is the autism. It’s just him. It’s all of the above and more. It’s the thing that tears my family apart but also makes us stronger. It’s the elephant in the room when things go wrong when we’re around people who don’t understand. But it’s also been MY path to understanding and tolerance.

  • Molly Hart Keene

    Autism is…part of us. It is unique joy and frustration. It pushes me past what I think I am capable of as a person, and particularly as a parent. It is the word “apple,” repeated when stressed or frustrated, and the word “igloo,” and the entire alphabet over and over again. It is a little boy who can read big words (and comprehend them, too, thanks to lots of work).

    It’s meeting amazing people; it’s ignoring the turds of the world as best as we can.
    It’s also realizing that I can’t blame them for not getting it – but that I can monitor entrance into my life and access to my emotions.

    It’s the fear of being enough for my NT daughter. It’s the dread of walking into church with a boy (or occasionally a girl) who doesn’t want to be there. It’s loneliness, and it’s community.

    It is many things, but it is not everything. And it sure as heck isn’t nothing.

  • Michael Scott

    Mine is a sense that everything is somehow different than it should be. An addiction to the pulsing monotony of drum-driven music, it is something that can provide order to the unsortable audio chaos of everyday life. It is thinking so quickly in symbols and diagrams, but being unable to summon the voice to articulate these thoughts. It is learning to type 100 wpm so that I can find a method of making myself understood. My autism is explaining to everyone at work and in my in-laws’ family that I’m not angry, arrogant, or dismissive–I just don’t know how I sound. It’s colors that get so bright I wear sunglasses in my living room, and the sudden sense of every ridge on fingertips when a hand brushes my arm. It is being able to isolate every single sensation coming across every inch of my skin in reflection, but being tormented by the feeling of ants crawling across me in the moment. It is knowing that my ability to flourish is dependent entirely upon people who I must trust to be ethical and to act in my best interests, because if they don’t then no one else will. My autism drives me to make myself comprehensible despite having no ability to trust my own perceptions, to drive others to understand how one can simultaneously love being buried alive and fear small spaces. It is a discerning palate, a well-honed ear, and a mess of indistinguishable ideas. It is rather like the way other people describe dreams being, only with the white hot awareness that others are integrated into these sensations, whereas I am stuck attempting to explain them to myself.

    • Tired Mama

      Michael, thank you so much for your words. For lack of anything better to say, it was incredible to hear what you bring to the table. Thanks.

    • Rachel

      Thank you so very much, Michael, for your personal description of your autism. It is this sharing of information that makes a better world for all of us. You have personally helped me to be a better mother to my child with autism, and a better friend and advocate for others.

      • Michael Scott

        Thank you for the kind words. I find myself in the unique position of being a “pattern-finder”, but for written words instead of numbers. It helps the communication gap quite a bit. I want to see more people in this situation putting out firsthand narratives. I love that so many parents are doing this, but unless we describe it from our own point of view, there’s no baseline to really use for comparing what we perceive to what others perceive. I think that, just as I learned to empathize with NTs through literature, an AS literature can increase NT understanding of our ways of thinking.

  • Spectrummy Mummy

    My girl, in all her complicated glory. And more and more of my boy too.

  • PJ Ruddy

    My Autism is:

    Waking up in the morning from a finger in the eye, ear, or nose.

    Having a baby boy, even though he is almost 6 years old.

    Embracing the use of words and, or phrases that will be in the dictionary one day such as “Flaptastic, Stimalicious, Stimtastic, Get your flap, (or stim) on.”

    Repeating “123456” in my own head even when my son has been gone to school for hours.

    The sweet voice of my son scripting “The Wizard of Oz,” “Toy Story 1.2, & 3,” and any other one of his favorite shows.

    Being unemployed from the Human Services Field because “I care too much.”

    Fighting for the best services for people with disabilities no matter what those disabilities are and how old the people are who have them.

    Knowing from my work experience that throwing money at Autism is just throwing money.

    Knowing that raising awareness, is just that “awareness.”

    Digging deep within myself to try to find a nice way to get other parents to not define their children by their “Autism Label.”

    Learning how to balance life.

    Hating the word “Autism.”

    Living in the moment, because that is all I have.

    Worrying about how my partner is doing.

    Worrying about how my daughters are doing.

    Not completely trusting those who care for our children because I know too much of how evil people can be. The pitfall of being an abuse & neglect investigator for the Office of Protection & Advocacy.

    Being Anti-Autism Speaks for a myriad of reasons, but mainly because they do not employ individuals with Autism, and I read their yearly tax statements. At the same time I hold no judgements and refrain from arguments if you believe in any cause. I state this just in case anyone wonders why I am not present at walks & fundraisers.

    Fighting Substance Abuse. “One minute at a time”

    Being able to say clever things at PPT meetings such as “My son is Autistic, he is with his typical peers.” “You paint a pretty picture of your school for next year, but the closer it gets it looks like a Monet.” & “I’m sorry, but I don’t believe the man behind the curtain.”

    Not being afraid to kick people off my son’s team when they continuously drop the ball.

    Enjoying the little things.

    Not being afraid of the future.

    Thought provoking.

    Wishing the USA was more of a socialistic society.

    “Finishing Strong” every day that I can.

    Accepting the way others deal with Autism because we all know and we will always remember the way it felt when we found out, or figured it out.

    Learning what “it could be worse” really means.

    I hope this will give some insight on what Autism is for me. I know we all do our best to deal with a vast spectrum of issues related to Autism and I believe that sharing our issues can help us help each other.

    • Rachel

      Pj, I want to thank you so much – most especially because I know you took time and put forth careful effort into making this addition to this discussion. It is welcomed. It encomapasses the point that ALL of our experiences with autism are valid ones and worth having a voice.

      Peace –

  • Michelle Berrett Bodine

    My Autism is…
    Trusting that God has a plan for my boys that I can’t yet see.

    Being daily amazed at how far they’ve come, realizing that it’s because of our combined strength, and knowing that I’ve been given a great gift to have them as my children.

    Struggling to contain my emotions at school meetings, doctor visits, church activity, family gatherings or anywhere else where they may be judged as different. Avoiding taking them shopping because it’s too hard for me to remember what I’m there for and still keep my boys from falling apart. Creating great adventures at home where we are ‘safe’ from the outside world.

    Wishing I had more than 2 hands so I could hold their hands and rub their back at the same time. Finding new ways to make my little guy feel snuggled… without touching him. Wishing I had more time and energy to make all their food from scratch to avoid the dozens of allergies they each have. Making at least two, and often three, meals for every meal for my family of six because no one can/will eat the same things.

    Having an extensive knowledge of all things Nintendo, Pokemon, Star Wars, Super Heroes, and Thomas the Tank Engine… because occassionally it can earn you extra ‘Cool Mom’ points or be the only thing that saves me from a public meltdown.

    Going to school meetings, not just for my boys but for my friends’ children, and fighting for changes in our local school districts. Being quick to call in the media when any child is treated unfairly. Fighting for teachers to attend our annual Autism Conference. Figting for a resource center to help families receive diagnostics and therapy. Creating a website for our support group that has information useful to families on a national level. http://www.aswtcc.org Printing piles of information to share with the pediatrician who’s only reference for Asperger’s was a paragraph at a conference six years ago.

    Adjusting my work schedule as a bridal boutique owner to manage 5 trips to 3 schools per day to transfer my own and friends’ children to and from. Making myself available to offer respite to other families as often as possible although I rarely receive any myself. Homeschooling part time because middle school is rough without being afraid of public restrooms, easily confused in crowds, fear of busy places.

    Trying to explain to my mother why having my boys visit for a week or even two is more complicated than just getting them there, why I have to create a menu for her, why my youngest may become violently ill the night before the trip. Because that is his current pattern, how he avoided 4 field trips over the last three months. How her living at the top of a mountain away from the city doesn’t mean it’s safer for him. How she can NEVER let him out of her site. How eleven really means six, and how sixteen just recently meant older than ten with the possibility of fourteen.

    Convincing my father that one on one swim lessons are the ONLY option because my son nearly drowned three times last time, and I was the one to pull him out each time. Convincing him that having the summers off is a good thing, lets my boys decompress, is the only way we can have a good start to the next school year. That not every boy needs to be an Eagle Scout.

    Being the ‘Mama Bear’ more often than I wish I needed to, but being grateful that my oldest is finally coming into his own and not needing my defenses so much anymore. Grateful that he blends in at school now, that he is a defender for his friends that still struggle, that I know he will be okay living on his own soon.

    Not sleeping more than four hours per night, because I can hear them tossing or getting up multiple times or the coughing tics that never quiet. Because I worry.

    Having amazing people blessing my life with their support, their knowledge, their strength. Knowing that without them I wouldn’t have known, wouldn’t have learned so much, wouldn’t make it through the hard days.

    Learning a new language, a vocabulary of acronyms, therapy techniques to use at home because we will never quite qualify for anything official. Knowing that no one ever just has Autism, that there is a myriad of other diagnostic terms and languages to go along with it. Becoming friendly with the words tic, stim, squeeze, flap, OCD, ADD, anxiety, panic disorder, etc. Knowing that the doctor who diagnosed my son with oppositional defiance and told my husband and I we need parenting classes had obviously not read anything his teachers had written about how helpful and sweet he is. That just because the doctor said it doesn’t make it true, it’s all just based on opinions and an hour with my child does not make you an expert. It’s okay to fight back, to trust your gut. Most times moms are right.

    Quoting laws at IEP meetings. Having a list of resources at my fingertips to help the mom of a newly diagnosed child. Maintaining my composure as we talk, as I relive her moment of realization. Making an army of friends around the world I would never have known otherwise.

    Losing my spontaneity, having to plan ahead for the smallest change or adventure. Knowing the fine balance between giving this child enough warning and that child too much. Refusing to give up my sense of humor, always being the one to see the silver lining. Making music and funny business a part of our routine, making change a part of our routine. Accepting that it’s okay, even better, to be different.

    Loving all my children for their uniqueness, celebrating every achievement, hugging them every chance I can. Knowing it will be okay, that I’ve been blessed to be their mom.
    ~Michelle

    • Aimee Velazquez

      Thank you so very much for sharing your autism. It is wonderfully written and oh so telling. I hope that as my littlest ages, that I will have the ferocity and tenacity that I find in your words. Your boys are so very lucky to have you, as you are blessed to have them.

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