[Editor's Note: This is the product of a previous post that took on a life of its own, so I made it into a permanent page.]
After such an overwhelming response to Autism Is… - I thought it perfect to open the floor to YOU and how autism is experienced in YOUR life.
The more we understand each other’s experiences within this community – the more united we become. The more united we become – the better equipped we are to seek solutions and the louder our collective voice becomes to get the word out to those who can help us.
So go ahead – share what autism means in your world - the good, the bad and the unexpected.
[Editor's note: When you leave a comment, subscribe to the comments on this post - then it becomes a true sharing experience and you can read what autism is for others, too!]
The Bloggess
June 15th, 2011 at 12:02 pm
Shannon wrote:
[June 12th, 2011 at 9:39 pm]
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.
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jess wrote:
[June 12th, 2011 at 9:40 pm]
… all consuming.
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Aimee Velazquez wrote:
[June 12th, 2011 at 9:59 pm]
…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.
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Kari wrote:
[June 13th, 2011 at 7:26 am]
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.
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Aimee Velazquez wrote:
[June 13th, 2011 at 12:15 pm]
Thank you.
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Katie wrote:
[June 12th, 2011 at 10:05 pm]
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.
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Lisa Gallegos wrote:
[June 12th, 2011 at 10:06 pm]
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
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Fi (Wonderfully Wired Mum) wrote:
[June 12th, 2011 at 10:37 pm]
Overwhelmingly exhausting, incredibly intense but also wonderfully rewarding :)
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Fi (Wonderfully Wired Mum) wrote:
[June 12th, 2011 at 10:42 pm]
http://wonderfullywired.wordpress.com/2011/05/20/what-has-autism-done-for-me-a-mothers-journey/
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Jennie K. Diller-Daniels wrote:
[June 12th, 2011 at 10:42 pm]
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.
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Laura wrote:
[June 12th, 2011 at 11:03 pm]
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.
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Kari wrote:
[June 13th, 2011 at 7:18 am]
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.
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Tired Mama wrote:
[June 13th, 2011 at 8:16 am]
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.
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Donna Murray wrote:
[June 13th, 2011 at 8:32 am]
This is our autism:
http://donnamurray.blogspot.com/2011/04/this-is-our-autism.html
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PJ Ruddy wrote:
[June 13th, 2011 at 9:40 am]
Oh I will most definitely will work on this one.
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the jay train wrote:
[June 13th, 2011 at 10:07 am]
… 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.
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akbutler wrote:
[June 13th, 2011 at 10:11 am]
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.
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Molly Hart Keene wrote:
[June 13th, 2011 at 11:59 am]
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.
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Michael Scott wrote:
[June 13th, 2011 at 2:14 pm]
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.
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Tired Mama wrote:
[June 13th, 2011 at 3:00 pm]
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.
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Rachel wrote:
[June 13th, 2011 at 3:36 pm]
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.
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Michael Scott wrote:
[June 14th, 2011 at 12:00 pm]
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.
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Spectrummy Mummy wrote:
[June 13th, 2011 at 3:23 pm]
My girl, in all her complicated glory. And more and more of my boy too.
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PJ Ruddy wrote:
[June 14th, 2011 at 1:27 pm]
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.
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Rachel wrote:
[June 14th, 2011 at 6:28 pm]
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 -
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Michelle Berrett Bodine wrote:
[June 14th, 2011 at 10:50 pm]
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
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Aimee Velazquez wrote:
[June 15th, 2011 at 6:17 am]
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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June 15th, 2011 at 12:25 pm
Please continue your comments here. Thank you! I am overwhelmed by the thoughtful and courageous comments!
June 15th, 2011 at 8:13 pm
Autism, for me, is finding the balance between helping him assimilate and keeping him true to himself.
June 15th, 2011 at 8:27 pm
My autism is…
Loving him when he is unloveable…
Hoping for him when he has none…
Being calm when he can’t…
Staying present when he retreats…
June 16th, 2011 at 1:14 am
YES!!!! I Love this!! It sums up so much!
June 15th, 2011 at 8:28 pm
Our Autism is….hours and hours of building..reams and reams of paper with scribbles, letters, lists and now beautiful drawings. Guilt and regret that a sick family member took advantage of my sweet blonde boys inability to talk and used him in a way no child should ever experience. Hours and Hours of Therapy. Medication that I swore I would never let my son take, and now I am greatful he has it. Tears, sleepless nights and the dull ache that Im not doing enough (even though I am). Divorce. Fighting with the school to make sure Little Man gets what he needs and DESERVES and isn’t lost. Our Autism is now the free hugs and kisses and snuggles and I love yous. The lost years being reclaimed. The sibbling relationship between an older sister and younger brother that is both friend and foe..they are eachothers best friend and worst enemy, but you cant separate one from the other…It is the best thing that ever happened to me and I wouldn’t trade him for anything.
June 15th, 2011 at 8:38 pm
Autism …. So many things joy, pain, anger,exhaustion!! The overwhelming feeling of failure none stop failure!! Not by him by me, Why can’t I have more patience, why can’t I be stronger, why can’t I make him talk?? Its an everyday struggle!! Then there’s the joy, the smile, the laugh, the new word, the hug ,the kiss. I guess to me, Autism is my life.
June 15th, 2011 at 8:49 pm
Our autism is never boring. We see life in a different way,here’s a few reasons why; http://livinginthepuzzle.wordpress.com/2011/06/06/beach-experience/
June 15th, 2011 at 8:56 pm
My autism is the ticking of a clock. Always ticking. Sometimes subtle in the background and other times the ticking is so loud I can’t sleep, but it is ALWAYS ticking. Ticking the time between knowing there is a problem until a diagnosis. Ticking the time between a diagnosis and services. Ticking off the days before receiving services and seeing progress. Ticking off those first five VITAL years that my son can create alternate connections in his brain that can help him prosper as he grows into an adult. Ticking the time I spend frustrated with professionals that should know more than I do. Ticking the amount of time I spend educating and advocating instead of just being. Ticking off the moments that I wake up and lose sleep worrying about my ability to help him and his future.
The ticking slows occasionally though. When I am not advocating, educating, pushing and worrying, I am captured by his eyes. Those eyes that barely noticed me his first year, capture me. The ticking slows and I am frozen in time by my love for him.
-That is my autism.
June 15th, 2011 at 9:04 pm
my autism is spontaneity gone, because structure and routine bring better results. It/s fighting at dinner time when trying to have my 3YO try something different from the only five things that he will eat. It’s hearing the ABCs song most part of the day, except from when he is spelling every word he sees on paper. My autism is the autism of just my husband, child, and myself, because everyone else in my family has decided to tune it out. It’s isolation, and it’s lack of eye contact (in me!) because I am embarrased of the stares from other adults in public. My autism is very loud; lots of screaming when not getting his way; it’s rehearsed scripts throughout the day.
My autism is LOVE, oh boy how I love that child! It’s finding the best friends ever in the online community of parents who know what I go thru and more
June 15th, 2011 at 9:53 pm
[...] Posted by RachelB Fellow Autism Momma, Blogger, and Military wife, who also happens to share the same first name as me posed the question “What is Your Autism?” [...]
June 15th, 2011 at 9:55 pm
This is our Autism: http://footprintsintime.wordpress.com/2011/06/15/this-is-our-autism/
June 15th, 2011 at 10:19 pm
Our autism is…My son will not eat anything but crackers. I can handle the meltdowns and delayed speech. But his eating is what scares me the most.
June 16th, 2011 at 12:20 am
Our autism is a boy who I once thought was deaf and dumb but now says the most wonderful things to me everyday. A boy with very special ears that can name any note and even name some chords by sound alone. A boy who has taken piano lessons for over 3 years, plus a semester of violin, a boy who now plays trumpet in 5th grade band and played recorder club for 2 years, and a year of chorus too. It is a boy who was kicked out of the concert hall in Dec 2005 for roaming the seats but who tonight sat through a long organ recital with rapt attention (and reads the program too!). Yes a boy who has sat with me through 3 Mahler symphonies just since January! A boy who I thought was stupid who now knows every scale and chord imaginable, who can read music and play so well for only 11 years old! A boy who remembers every name and address and exit # that I cannot. A boy who I thought would always walk tippy-toe who now mostly walks like any other boy, after braving the casts and the braces and the physical therapy. A boy who I thought would never jump or run who has been riding a mountain bike on the trails for 5 years now, a boy who loves amusement parks and rode my shoulders through 3 outdoor Bob Dylan concerts and who saw Phil and Friends and Bob Weir’s Ratdog and the Allman Bros. Band and Willie Nelson (twice) and Junior Brown, not to mention a bunch of symphonies and a few dozen chamber concerts. This is a boy who has played piano recitals many times now, who has been on the stage at school with the chorus and the band and the recorder club, a boy who plays solo piano as the kids file into the auditorium for assembly, a kid who gets “hi” from so many of the wonderful classmates and teachers and aides who love him. Autism is the joy of a different way of thinking and sensing and perceiving, it is the fascination with overlooked curios and the innocence of a boy who has never meant ill towards any living thing. A boy who seemed to have no affections who now loves people very much, who thinks of others and talks about others and is fascinated with families –not understanding why some marriages endure and others do not. A boy who as a baby ate anything and who then became narrow and who now has branched into some things bravely –so long as it doesn’t have sauce. It is a boy who has become my favorite thing in the world, who is the measure of all things, who reminds me how precious is this earth and its diversity of life, how worth conserving!
June 16th, 2011 at 7:07 pm
Autism is times two here. It is trying to navigate both worlds at the same time because they are completly different. It is trying to live with the guilty feeling that one or the other is somehow “losing” because I am one person. It is trying not to lose myself in all of this. It is trying to get one to stop trying to hurt herself and trying to get the other one to stop hurting me. It is going between being estatic because the younger one has been invited to a birthday party or recieves a phone call from a peer and explaining to my older one why the invites never come for her and explaining to her why no one wants to be her friend. It is trying to not be yet another statisic and finding time for my husband in all of this when I don’t have anything left to give.
June 16th, 2011 at 10:37 pm
As a mother, I raised 4 kids with little to no problems. As a Grandmother Im raising 2 grandchildren. When they came to live with me four years ago. I knew something wasnt right. Now I live with the knowing of what Autisim is and what I can do to make them all they can be. We have had our moments of what do we do now and how do we make this work for them. There are tears of sadness and of joy. Every day is a new adventure, a new way of learning things that might be simple to most. Its the joy of seeing them grow and reach that goal. It may be slow at times to get there but I know they have it . I see them wanting to know and learn. They truely are a gift. I dont take any little thing for granted that they do, because I know how hard it took them to get there. I feel for these parents, because I to have friend and family that dont understand, but what I do have is a wonderful husband and 2 very special Grandchildren.
June 17th, 2011 at 12:11 pm
[...] it!. Her post was so popular that Rachel started a new section of her blog for readers to come and share what autism means for their [...]
June 18th, 2011 at 2:14 am
For us autism is a roller coaster… One nice comment, on tiny accomplishment sends my emotions soaring through the roof. Just as quickly one tiny issue puts fear into my heart. And one bad event can trigger depression just as easily. Sometimes I think everything will be ok, at other times I’m convinced that things only go down hill from here. I’m always struggling against the “what-ifs.”
Autism for us means choosing between two children with special needs. Not enough time, MONEY, or energy to address every single issue for both kids.
Autism is expensive. Autism often robs my children of the enjoyment that other children have on vacations, at outings, during field trips, playdates, etc. In addition, our family has to sacrifice vacations and other special events because we’re busy spending money on autism.
Autism has taught me about what is truly important in life. Our family has gained friends, TRUE friends that can share life’s ups and downs. We learn to find happiness with what we have because we have learned that nothing is promised to us and we take nothing for granted.
To sum it up, autism for us is life…. intensified.
June 18th, 2011 at 5:47 pm
Our Austism is changing from short fuse , ready to go , does not like to shop to wanting friend and wanting to be normal. Sleepless nights, worried all the time, trying to break the chain and let him be independent but still know that I need to be around just in case. I love watching him grow up and wanting to be like other kids and fit in but scared because he can short fuse so easy. I just pray everyday God is with us and will guide me to lead him.
TIna
June 20th, 2011 at 4:23 pm
Our autism is….extreme moments of frustration and fear that have melted into the greatest love I have ever known. Its the affirming moments when he says “Momma you are my very best friend” when I know two years ago, he could hardly say anything. It is the God showing us that we are perfect in His eyes, even when the world doesn’t see us in that way.
April 11th, 2012 at 2:54 pm
Today is RM’s One-Year Anniversary at her outplacement autism program and it was celebrated with a monthly review in which I watched her doing amazing things we only dreamed of not that long ago. I celebrate hope today, and possibilities. And faith. And ‘our’ autism.
Thank you to Jess at Diary of a Mom for posting this today:
http://adiaryofamom.wordpress.com/2012/04/11/our-autism/
“Ed note: Warning, what follows is deeply personal, intensely honest and pretty damn raw. I’m fairly certain that one could take sentences and even full paragraphs out of context and I’d pretty much look like an @sshole. Hell, maybe even when taken in full I look like an @sshole. But I think the chances are far lower if presented in its totality.
That said, I ask two things as you continue on – 1. That you reserve judgement until you’ve read the entire post. 2. That you link to the post rather than quoting it.
And I’ll add a third – that you read it in the spirit with which you’d want your own diary to be read.
Thank you.
-
The Thinking Person’s Guide to Autism has a wonderful initiative this April. In honor of Autism Awareness Month they’re publishing interviews with autistic people. One by one, they are showing the faces of autism, and in so doing offering the world a glimpse at the people behind the label.
It’s exactly what I preach day in and day out, isn’t it? Ad nauseum really. Tell your stories, demystify autism, pull back the curtain to reveal the amazing people behind it.
So I was thrilled when I got the interview questions in my inbox. I began to think about which picture of Brooke we could use for the post. Perhaps one of my beautiful girl laughing her incredible, whole body laugh. Or maybe one of her doing happy. Whatever it would be, I looked forward to choosing together.
On Saturday morning, Brooke and I were cuddled together in my bed. She was playing on her iPad, her head propped up on my hip. It seemed like the perfect opportunity.
I opened my laptop and looked at the questions.
What is your name?
Do you have a website?
What would you like a one-sentence description of yourself to say?
Do you have any autistic superpowers? What are they?
What are some situations that make you happy, or satisfied?
What are some situations that make you sad, or anxious?
Are there specific topics you find particularly compelling?
What are your preferred ways to be social?
What traits do you prize in a friend, or companion?
Are there parts of your life you wish were easier?
What’s the next big goal you have for yourself?
What does bliss feel like to you?
I’d already asked TPGA’s managing editor, Shannon if it was OK to modify the questions to make them accessible to Brooke. There was no way my girl was going to remotely understand words like compelling or concepts like bliss. Of course, she’d readily agreed.
So what I planned to present to Brooke that morning were the now significantly modified questions.
“Hey, Brooke, Honey,” I began, “can you tell me what it feels like when you’re really, really happy?”
“I smile,” she said.
“Well, yes, Baby, you do. That’s a great answer. But how do you feel on the INSIDE when you’re smiling?”
“Like I’m happy.”
Fair enough.
I tried again.
“How do you like to spend time with your friends?”
“When I’m with them.”
“Right, Baby. When you’re with your friends, what do you like to do with them?”
“I like to be with them. You’re all done asking now.”
And I was. Because I knew that we’d get no further toward really answering the questions. Sure, I could eventually get her to tell me that she likes to do Ring-Around-the-Rosy or Hands-in when she’s with friends. I could probably tease out that the fire alarm makes her anxious. But her answers would be an inch deep and a mile wide and as much as they are fabulous and wonderful and BROOKE, well, if we’re being even remotely honest here, they were not really answering the questions in the spirit of their intent. Not even close. And most importantly, we were done because I knew that to continue on was going to be really difficult for my girl. She had made her choice and I planned to honor it.
So I gave up. And as much as I’d like to claim that it didn’t, it made me really, really frustrated. And sad. And somewhere deep, angry.
I didn’t want to be angry. And anger wasn’t warranted or justified or right, but there it was.
Because I had looked at the interviews with the autistic people who had already posted and by God they lived in another stratosphere than my girl. And they struggled too (and by no means do I mean to imply that they struggled or struggle any less or any more than my girl) and God bless them, they talked about those struggles and I was grateful – overwhelmingly grateful – for that, but so too I was so painfully aware in that moment that they COULD talk about their struggles and their bliss and their anxieties and their superpowers and the ways they like to socialize.
And that is just not where my girl is.
And maybe someday she will be there – I believe with all my heart that someday she CAN be there and we work and we work – oh how SHE works – to get there. And if she gets there, great. And if she doesn’t, fine. But it’s not where she IS. And in that moment, that mattered.
Because I looked at those faces in the posts and I knew – so palpably I knew – that they were – that they ARE – the faces of autism. And yet – they are not OUR autism.
And that’s OK. It’s more than OK, it’s wonderful, right? Because aren’t I the one who preaches (again and again and again) that autism is one word but there is no one autism? Yes, I am. Because I believe down to the depths of my soul that it’s true – that autism comes in so many and such widely varied manifestations as to make their shared title a ludicrous farce. For God’s sake I say it so often I could type it in my sleep.
But nonetheless, I had this moment. This awful, ugly, human moment where I wanted to stand up and shout, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my girl!’
And I hated it. But so too I was grateful for it. Because in it I saw the mothers and fathers and the autistic adults and their siblings who read about my girl – my girl who talks – by God she TALKS! – and who reads and who is identifying emotion and practicing self-calming and connecting and Jesus, making a friend, and I see them shaking an angry fist and saying, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my child!’
And I felt it. I viscerally, painfully, intensely felt it. What it must be for the parent whose child has no words, who feels as though they live under siege – desperate to keep their autistic child and his siblings safe, cleaning feces from the walls again and again, awake around the clock, saying, how DARE you? How DARE you present your shiny, happy story to the world and say, ‘This is autism’? Cause that sure as hell ain’t OUR autism.
And in that awful, ugly, human moment I got it. And I wanted to apologize to half the world and curse the other half and then throw up my hands and walk away in defeat – because HOW? How the hell do we do this? How do we explain that they’re ALL autism? Cause ludicrous farce or not it’s the only word we’ve got.
And then, as so often happens when we allow ourselves to feel the things that we don’t want to admit to feeling, the shattered pieces began to come together and just like that, it all made perfect sense.
I realized that it’s exactly why TPGA needs to keep running those fabulous interviews with the brave and wondrous people who are willing to bare their souls to tell the story of autism – the beautiful, frustrating, complicated, messy, overwhelming story of autism. To break down the walls, to find understanding and compassion and validation and celebration and support and community and all of the things I want so badly for my girl.
And it’s exactly why I need to keep writing – at least until my girl can tell me to shut up or join me or take over and write for herself if she so desires. It’s exactly why EACH AND EVERY ONE OF US in this community has to keep talking. To each other and to everyone else out there who we and our children will encounter.
Because autism is one word, but there is no one autism.
This is our autism.
What is yours?”
July 23rd, 2012 at 11:48 am
My autism is providing unconditional love, thru everything that happens. My son, like many, has stims and acts without warning, and the results are often offending and misunderstood by others. I have come past worrying what others think when this occurs because how you handle each occurrence must be disected to me to think what caused him to do this and how can I turn it into a positive training experience that he may learn from. Even though my son is nonverbal, he has many ways of expressing what he is feeling. It is up to me to learn these and enable him through proper punishment if you may, by making it a training/learning experience instead of punishment for all outbursts. I am a loving father that, as many would do just about anything to help and try to break through the invisible barrier that keeps him in his own world. This is the first that i have written anything about this as i have much time now to be able to read and research more about others and what they encounter. I was very much impressed by Mrs SGM’s articles.
Rick