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Autism Perception: "A Bump in the Road?"

Child in road By Julie Obradovic

I had the opportunity recently to spend some quality time with my college room-mates. Senior year we lived in a falling-down-stereotypical-college-campus-house, 8 of us total, all friends for the duration of our school days. They were some of the best days of my life.
 
As we all know too well, time moves on, adulthood settles in quietly, and before you know it, months, sometimes even years pass before you get a chance to see one another. Thank God for email which give you the chance to virtually keep up with all that is going on.
 
A few years ago we got tired of letting so much time pass, so we started scheduling annual girls’ nights or family barbeques. It was my turn this year to take the reigns, so I scheduled an overnight get-away to my parent’s lake house. We couldn’t wait.
 
At the last minute, a few of my friends had to back out, and slowly it became a small girl’s only get together rather than the big family bru-ha-ha I had intended. None-the-less, it was time well-spent.
 
After about 5 hours of catching up and 5 bottles of wine in the process, we started getting sentimental. Aren’t we so lucky to still have one another? Didn’t we have the best time together? Don’t you miss those days of having no responsibility? Yes, yes and yes.
 
But then someone said something that snapped me into sobriety.
 
“And aren’t we all so lucky otherwise? I mean, really, look at all of our lives. We’re all successful career women and moms. We’re happy and healthy. And granted, some of us have had a few bumps in the road, like you, Julie with Eve, but none of us have had anything really traumatic or awful happen to them. Really ,we’re so lucky.”
 
I didn’t know what to say. I sat there with my mouth open. A bump in the road?!

That’s what she was calling my experience with Autism? A bump in the road? A little distraction on the way to happily ever after? And weren’t we all so lucky? I couldn’t speak. I didn’t speak.
 
I must say my friend is one of the kindest, warm-hearted, sensitive, fun individuals I’ve ever known. I love her dearly and she loves me too. I know to my core that she meant no disrespect, no harm, and certainly didn’t mean to be insensitive.
 
But that didn’t make it bleed any less. I felt like a fish who had just been gutted right there on the sunroom floor.
 
A bump in the road?! I couldn’t get past it. As their conversation continued I sat staring into that dark, dismal place where all my nightmares past, present and future lie just below the surface waiting to come out and scare me at a moment’s notice. The monster in me that sleeps with one eye open woke suddenly as it always does when someone casually dismisses the profound suffering Autism causes.
 
I think about the video I have of Eve at 5 months old, laughing and cooing and making funny noises with the voice she had just discovered. She was kicking and squealing and delightful and full of life (which is what her name means) and just about to descend into her first ear infection that spiraled into 3 years of horrific illness after illness after illness, followed by developmental delay after delay; a spiral that she has never fully stopped being affected by. It was the last time Eve was ever herself.
 
I think about the $14,000 school loan I just had to take out, because even though Eve is technically recovered from Autism, she is like what Jenny describes when she says, “You can recover from getting hit by a bus, but you may never be the same.” Only Eve wasn’t hit by a bus; she was hit by a Mac truck.
 
Eve is reading years behind grade level, and it is becoming more and more apparent that the concept-imagery part of her brain is simply not recovering like the rest of her. Abstract ideas and thought are so very hard for her. There is a school here, an hour both ways from my house that works on just that, 4 hours a day, 5 days a week, one on one. Of course we’re going to try it, because hey, isn’t that what we warrior parents do? And so now my little 8 year old, instead of going out to play with friends all summer, gets to do what? You betcha, more freakin therapy! And I get to work all next year just to pay for it! Fabulous!
 
I think about the other tens of thousands of dollars we have spent, and then try not to think about it and how that and my husband’s depression over Eve almost caused us to divorce.
 
I think about constantly explaining to her brother and sister why she gets different treatment sometimes and how her brother in particular is really, really starting to resent her.
 
I think about how the little girls in the neighborhood don’t call as much anymore, and how I see them across the street every day swimming together, and how not one day this summer have they called to invite Eve. I realize how little girls age 8 are into dolls, and barbies, and make-up, and so much more, and how my Evie just can’t relate. You want to play goofy, watch TV, play a computer or video game, and ride a scooter? She’s your girl. But this year in particular, the others girls are changing and Eve just doesn’t fit in.
 
I think about seizures and hospitalizations and ambulance rides and putting her on the little yellow school bus as a 3 year old and how scared she and I were and that stupid harness that looked like a torture device that I thought for sure would kill her or trap her if there was an accident and watching it drive away and wondering if anyone could ever feel this awful.
 
I think about the moment I realized she hadn’t smiled or spoken in weeks.
 
I think about the shit leaking out of her in the tub and the pool because she was so constipated and how I was told this was typical and I think about being scolded for her not being potty trained at 3 years old by the very same people.
 
I think about the eczema and the yeast infections and how she only slept in a rocking chair and how she stimmed and how her joints were way too flexible and how her hair was like straw and how she drooled incessantly and how this crap went on for YEARS before anyone helped us.
 
I think about the fucking blood draw kit that I was supposed to send in that they didn’t centrifuge properly,  and how the vial opened up violently in my kitchen and spilled all over me and the table, on face, on my lips, all over my hands and how I stood there screaming and shaking, literally with my daughter’s blood on my hands which is exactly how I felt metaphorically anyway, and how scared and confused and exhausted I was wondering if these DAN doctors really were charlatans and if I were hurting her and how I wanted to be a teacher not a doctor and what was happening to me that I was trusting people on the internet I had never met to tell me how to help her? Had I lost my mind?
 
I think about the ear tube surgery that didn’t work and the other ear tube surgery that we have to do because oh yeah, she’s got scar tissue and fluid in them again, which is not only why we can’t do HBOT, but also why she says WHAT? over and over and over to which I get annoyed and then feel guilty.
 
I think about what it possibly feels like to be poisoned to the point of losing your mind and the ability to use it to tell your mommy or anyone for that matter where it hurts and that you’re in so much pain and so scared and totally aware of what's happening to you and then I stop because that thought alone makes me want to faint.
 
I think about holding her down  to be catheterized for bladder infections or urinalysis, and all the other times I have had to hold her down to be poked or prodded, including multiple EEG’s that showed us nothing so we were sent home.
 
I think about the time she wandered out of our hotel room while we were sleeping and how I found her by the pool in her footy pajamas.
 
I think about how I had to move out of the house where she had her seizures and slipped away from our lives because it was too painful to be in those rooms anymore.
 
I think about her baby book that I stopped filling out after the first year because there was nothing to put in it. No favorite toys. No funny sayings. No first steps. No crawling. Besides recording her immunizations and subsequent rounds of antibiotics the stupid thing was worthless.
 
I think about my poor aunt, God rest her soul, that told me while babysitting, Eve made a high pitched scream that she had never heard in her life and how it was right after getting 7 shots while on her 9th round of antibiotics and how Eve never woke up the same child again.
 
I think about falling to my knees and vomiting when I learned how and why Eve got so sick and how I held her down to let it happen.
 
I think about how everything I have ever believed in, from my God to my country to my family to my marriage to myself to my friends to my faith, has been forever changed by Autism.
 
I think about someone I know saying to me that even if it were true that 1 in 100 kids were injured by vaccines, doesn’t that still make it okay for the greater good and I rage with a fire inside when it is said and look him straight in the eyes and say GIVE ME YOUR LIFE THEN. Give me your life! If you love the fucking greater good so much, give it your life! Are you willing to give up your potential and your life for the God damned flu or hepatitis B or chicken pox? Please, don’t ever talk to me about that again unless you are! And by the way, I don’t want your life, I WANT YOUR CHILD’S. GIVE HER TO ME! I GAVE YOU MINE YOU SON-OF-A-BITCH AND I WASN’T EVEN ASKED, NOR DID I HEAR YOU SAY THANK YOU!
 
I think about the fraudulent studies that I now know so well and the bastards who put their names on them and how in my worst moment I wish them and all the vaccine deniers of the world would have a vaccine injured child just so I could say I told you so you asshole, I hope you hurt as much as I do, and I hope you burn in hell, ha ha, and then I ask for forgiveness because that’s a terrible thought and I really don’t mean it, I think.
 
And then I think about how I don’t know if I will ever get over the loss. My daughter is here, yes, and I have so much to be thankful for, she is recovered!, which only makes me feel more confused and guilty because I know so many of you would give anything, anything to have what I have, but how can I explain the constant pain I feel over it happening in the first place and the worry I feel over what has not recovered (a little thing called her intelligence) and how that will affect the quality of her life and the rage I feel over the loss of my baby girl, the one God gave to me on March 27, 2001? The one in the video at 5 months old, laughing and cooing and squealing and bright eyed?
 
She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now. I want that Eve back! I want THAT Eve! I want to know who she was, damn it! I want to know who she could have been! Who she SHOULD have been! I want to know what she would have said as a toddler and if she would be an amazing athlete like her father and if she was funny or witty or serious and so much more. I want to know how our family would have been different and how my marriage would have been different. I want to know how my life would have been different.
 
And I hate the people that did this to her and I pray for the strength to forgive them for the anger I feel on IEP days when I get a big fucking pile of papers to go through that tell me exactly what she still can’t do or on the days I have to reorder supplements or analyze her stool or make a judgment call on whether or not we can have that ice cream because she’ll be the only one of the group not to get it and damn it hasn’t this child had to sacrifice enough?
 
I think about all of the people who have been able to benefit from my knowledge and our experience and my perfectly healthy nieces and nephews and how painful and wonderful it is to watch them grow and develop normally and how I can’t help but think, Where was my Julie? Where was my guru to save Eve? Fuck you, guys. Why do your children get to be saved? Where was my savior?
 
I think about the 86 weekends I have gotten up in the middle of the night on Friday, Saturday and Sunday just to give her medicine, and the 14 more I have to go.
 
I think about the money, God damn, the money.
 
I think about this upsetting radio-a-thon in Chicago every year for a local children’s hospital and how all these parents of children with cancer and other horrible conditions make me mad because they don’t know how lucky they are to have insurance to cover their children’s condition and how people feel sorry for them and have bake sales and doctors and nurses treat them with respect and how their children have medicine and a hospital bed and no one accuses them of just behaving badly or having bad parents and bad genes and how our children are the sickest on the planet and they are left to fend for themselves and fuck you all, too.
 
I think about the stupid people in this world who have nothing better to do than bother parents trying to help their children and wonder what the hell their problem is and for crying out loud just go the hell away and mind your own business. What do you care what I do or do not for my child? Get a life!
 
I think about my cousin making a comment in the exact same room about how it was only when my other cousin’s child had to have surgery that she realized how it feels to have a sick child and how awful that must have been for them and I want to punch her in the face thinking, surgery? Really? I mean, yes, it was scary and serious, but it was over, and she is fine and she’ll be fine and it was covered by insurance and she was in the hospital for a week. My daughter’s MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one.
 
And I think about all of the affected children around the world and how no matter how hard I try not to I see them everywhere. Everywhere. Everywhere I go, there they are. There's the Autism. There's the speech delay. There's the ADHD. There's the asthma. There's the diabetes. There's the peanut allergy. I envision them in one big group standing in this vast open area hovering above them in a helicopter trying to envision the level of destruction we have created and I’m overwhelmed with the loss. I am completely overcome at our stupidity and ego and ignorance and I wonder if God cries when he sees what we have done.
 
I think about all of this and more in what is probably only a few seconds. I realize I’m about to explode and make up the excuse I have to go to the bathroom where I stare in the mirror and compose myself. The monster in me is about to rear her head and I know I have to put her away because that’s not who I think I am or who I want to be or who I want them to see.
 
Truth be told I have haven't been as happy as I am right now in my life in years, and in spite of the pain that lives inside me, I am actually full of gratefulness and compassion. I am perfectly well aware of how much worse it could be and there isn't a day that goes by I don't thank God for the fact it's not. I'm not dismissive about my cousin's surgery (or anyone else's hardship or sick child for that matter), it was terrible. And I'm nothing but thrilled for the healthy children of my friend's and family, just jealous. This is the path I was given and I live everyday to try and make it right. I pray for strength and guidance and the ability to fogive the unconsciousness and ignorance in others, and truly, I think I'm doing a great job. I have dedicated my life to being the kind of person who takes lemons and makes lemonade.
 
I know my friend meant no harm, and in her defense, I’m sure our experience has looked like a bump in the road. I am a master of hiding my pain, a combination of needing to and having to.
 
I learned quickly people don’t want to hear you go on and on about Autism, especially if you think vaccines are involved, and that they almost always severely underestimate it as this mysterious little genetic speech disorder so what’s the big deal anyway and that you have to be careful about who you say what to. I’m keen to the swift change in conversation by someone when the topic comes up.
 
Plus, I can only think of 3 times I have actually broken down anyway, the blood incidence included, convinced that it’s fine to do, but not something that will help heal Eve, so move on. In fact, the day my daughter was diagnosed, actually the minute she was diagnosed I said these words aloud: I will cry about this later right now there’s work to do. When the house is on fire you don’t stand inside crying about it; you get the hell out. I also only break down to 2 people, my best friend and my husband, so how could she know?
 
So maybe her comment is in part my fault for not giving her the gory details of what Autism has really done to my life. Maybe I deserve an Oscar for people actually thinking it only was a bump in the road for me. Maybe that’s a compliment.
 
A bump in the road though? Gosh, is this what people think?
 
How can they ever know it was more like crashing into a brick wall going 100 miles an hour, and never waking up the same if at all?
 
I guess they can’t. And the rational side of me knows, that’s a good thing, but damn it, the human side of me wishes they could.
 
Julie Obradovic is Contributing Editor for Age of Autism.
 
 

Comments

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Lars-Ø.

How many times haven't we all said this with the silent voice inside of us...?
But instead of writing it down, we count to ten and swallow our pride and anger!
--
"A bump in the road though? Gosh, is this what people think?

How can they ever know it was more like crashing into a brick wall going 100 miles an hour, and never waking up the same if at all?

I guess they can’t. And the rational side of me knows, that’s a good thing, but damn it, the human side of me wishes they could."
--
If I meet someone that spit out a comment like this again I'm going to force them to read this post!

Like the t-shirt says: "The bull stops here!"


Kristen

Julie- you've done it again. I also cry about the stupid radio-a-thons- it makes me so angry, and then guilty. I love all of the AOA writers but you and Katie and Kim really get to the heart of it for me- warrior moms.

chrissie

Julie - this was just beautiful. I'm sending it to everyone in my life who just doesn't "get it". I feel your anger, fear and pain too. I am sick to my stomach over what happened to our kids, and how little people seem to care. AOA was a sanity-saver for me when Jack was first diagnosed. No one understands until they have lived it, or REALLY love someone who is living it.

The money pisses me off too. Someone else broke him and if I want him fixed it will cost me our life savings and our eldest's college tuition. Jack's brother has 3 more years of high school, and he works harder now than he ever did because his dream of going to college is directly dependent on his ability to get a scholarship. His resentment was showing itself a lot lately, so I asked him to come with me for a round of IV chelation. He had to hold down his 4 year old brother while the poor child screamed bloody murder, and it really affected him. On our way home he told me he finally saw the difference between his childhood and Jack's. Autism has taken so much from our family, but I can't help the pride I feel when I hear my typical son tell other kids that his brother is not "weird", but very sick and braver and stronger than any other 4 year old he knows. He tells them he would love to see any of their typical younger siblings live the life Jack lives and still laugh every day.

So I cry for what my perfect baby has become, and because very few people seem to care. I cry because Matt may one day be his brother's caretaker, and that is an unfair load of shit to drop on a young man. I cry because of the torture of diet, supplements, needles and hours of therapy a day that Jack must endure, just to be able to communicate on the most basic level. I cry because I lack sleep and money as well, and it's all so unfair. Then someting happens to make me count my meager blessings. Such as the little boy we encountered at HBOT the other day. 8 years old and severely disabled. No speech or physical movement whatsoever, and constant pain. His dad told me that 3 months ago he was a typical, healthy, active child (showed me video on his iphone), until he started getting a little clumsy. 3 months ago they got a diagnosis of ALD, and within weeks their little boy was gone, with no hope of recovery. They watch him moan in pain all day. They are watching him die, and for the fist time I was thankful for autism. Only because I still have hope, and recovered or not, Jack can still see me and hug me. At least I still have that. But I'm still angry.


Val

This is an incredible piece of writing that I wish could run in every newspaper in the country. The hell that our kids and all of us go through on a daily basis is not found in any other medical disorder on the planet. I'd like to have my mother in law read this one!! Val

nhokkanen

Intense, Julie. Very intense, but thanks for your honesty. Actually I still haven't finished reading your piece because halfway through it started to hurt too much and for now I skimmed.

That's part of the problem with our friends and family, neighbors and co-workers, fellow congregants and club members. Plain old garden-variety denial. We don't like to see it, so we push it away if we can.

And we parents frequently sense this discomfort in others, so we put on our facade of strength, of complete competence. Are we thus taking away others' responsibility for helping or even being aware of our family's problems? Or do we simply see the writing on the wall, that we're alone in this -- except for those in the same boat?

To Theodore Van Oosbree -- I appreciate your use of self-deception; it sounds kinda like hope to me. Okay, I'm ready to finish reading now.

Wendy C

I love this article!! It articulates all the crazy emotions I feel and rarely express. The thoughts of wishing someone would have warned me and maybe then my baby would be healthy like my niece who had no vaccines due to her mom and dad watching Chloe regress. The anger with no clear attainable target. The desperate wish to know your child in ways we may never be able to know them. Agonized, poignant, honest and real.......WOW.

Roger Kulp

"how this crap went on for YEARS before anyone helped us."

Mmm-hmm that's the way it is.Took me decades to accept that that's just the way it is if you have both autism,and severe medical issues,and are in a situation where one feeds on the other.As you know,it's not always vaccines.If infection triggers your autism, you are just as sick and often in the same way.

I like what you said about being the sickest on the planet.I ought to tell you the horror stories about the enemas my mother had to give me up until I was about ten years old.How I had to go to the doctors every so often to get "reamed out".It never goes away.I have to take massive doses of enzymes and probiotics so I don't have undigested food backing up in my colon.

And ever few weeks there's the out of control diarrhea.Diarrhea so bad the only thing you can do is stand naked in the bathtub,for hours,until it all drains out of you.You can't believe how sore and wrung out your bowels feel.

My last episode was only in early June.

You have the allergies,I have the chronic infections.Six of one...

Don't forget that a child can't have any friends.not if they are continually smashing other people's property,or going through drawers,and cupboards at other people's houses,with no idea of what they are doing.
It was only as an adult,and into my 30s,that I was able to grasp the grief and worry that I put my mother through with my continual wandering and eloping whenever we went anywhere.

Going through life with limited verbal abilities,and never knowing when you will have the desire for self abuse is no incentive for people to want to be your friend either.Eventually you just sort of take this stuff for granted.

Two questions

1)How much of you and your daughter's experiences have you shared with these people in the past ?Do they know it all?

2)Assuming they did,is the woman who said this a doctor by any chance ? There are only two groups of people who are so good at trivilalizing this stuff.Doctors and neurodiversity activists.

Only a doctor,or an ND blogger could trivialize these things as "bumps in the road".

Both of my sisters are autistic as well.my father went to Mexico and got a divorce when I was eight,and a few months before my younger sister was born.You can imagine what an incredible mother I have for sticking with me all this time.

There is no savior we have to be our own.

michele i.

This was a great piece Julie- so, so true.

Congrats on Eve's progress... I understand both the joy and the anger. I have 2 younger boys who are recovered and my oldest is still extremely affected. I struggle to balance my emotions all the time.

You did a wonderful job articulating so many of the things that I feel all the time.

thank you!

L. Stuiber

Julie,
I have an affected daughter and can relate 100%. I too get piss off about that radio-a-thon. Why the hell don't they do one for Autism. How about raise money for respite since the state of IL cut the funding. I will pray for your daughter. Please pray for mine. Her name is Jennifer.

Larry S.

julie

A friend of mine who died of AIDS told me that her disease acted as a "filter" to cut the jerks out of her life, leaving the true friends. Maybe having autism in your life is similar. It shows you who is capable of true empathy.

Thank you for posting this. I wish it could be reprinted in a major magazine.

Judith

I agree! This was the best article I have read in a long long time! It sure hits home. Thanks Julie

Donna L.

OMG, Julie, I am speechless. You just put every thought I've had for the past ten years into words I could never express. Thank you, thank you.

Krystal Pearl

wow... I am totally touched by this one. Some people will never understand how one is going through. I salute you for being so strong, I know its not that easy, but wow.. it really melted my heart. :) with the comments itself, many are touched by your experience. May you serve to be an inspiration to everyone.

Cathy

Autism is, by far, one of the most isolating events I have experienced...even when surrounded by tons of caring folks. They do not understand...how could they. As bad as they could imagine it - it's worse b/c it's e v e r y d a y; you are ridiculed by all the people you are supposed to look up if you want to help your childrens' illnesses.
This ripped the bandaid off my wounds they are bleeding - but I feel less alone.
Nail on the head...beautiful.

Michelle McNally

Wow! This is an amazing piece. It captures all of my thoughts and feelings EXACTLY! By the way Julie where do you live? I have an 11 year old girl who looks like she is 8. Your daughter sounds like my daughter. She is pretty recovered but having the same deficits as your daughter. She's not into barbies but she loves her XBOX, DS , computer, scooter and bike. I'm sure they'd get a long famously.

maggie

I lost everything, too because of autism. My mother (who I was very close to) died two months ago and I felt nothing and couldn't even cry. My heart has already been broken beyond feelings by autism. How is this living?

samaxtics

There have been many great articles on AOA, but this piece is absolutely stellar! It is just so spot on and as someone else wrote, I will definitely be directing others to this article.

"I think about the stupid people in this world who have nothing better to do than bother parents trying to help their children and wonder what the hell their problem is and for crying out loud just go the hell away and mind your own business. What do you care what I do or do not for my child? Get a life!"

I think this every time they show up too. Not a shill? Then why the &%^$ would you spend so much time and energy on this issue? How does that help improve your lot or that of your child's?

Again, Julie, well done you.

Laura Cellini

Julie, this is probably your best piece ever and that's saying a lot since you're a brilliant writer. Thanks for your candor, you really captured how so many of us feel.
Laura Cellini

Julie Obradovic

Thanks, everyone. I couldn't sleep much last night wondering if I were crazy to post this. But as I mentioned elsewhere, it was the easiest and hardest thing I have ever written, and I feel better having done it. It was very therapeutic to finally put into words (and believe me, there are more) how I feel sometimes.

I debated putting in the swear words, because as those of you who know me outside of this and maybe those of you who know my writing, that's not my style. I do swear in my personal life, but not that much. But if I were going to be honest about this topic, they had to be in there. That's the honest me. Those are the actual words that go through my mind, no editing.

It's comforting to know how many of you feel the same. I think this is a part of us that doesn't get enough attention. We're always putting on our professional game faces...have to be polite at school, to our families, to our friends...don't want to bring anyone down. Even here and when we're advocating, God forbid we have any emotion because that just plays right into the hands of those who call us desperate fools.

Anyway, thanks again. Hope it helps.

Crystal

Oh my gosh, this is my life. I SO feel your pain. I really have no words to say to you, as there are none that you didn't say. Hang in there, I guess.

Terri Lewis

People thinking it's "okay" to knowingly destroy one innocent life to make the other 99 better? Pure evil. By definition.

And also a daily occurrence in this world--"ever since Cain and Abel," as my dad liked to say.

Take your autistic child to work day? Genius, Kim!

This story? Print, send, mail, hand over in person--and let the chips fall where they may. Beautiful, necessary. . .thank you, Julie.

People don't want to hear about our suffering? They're going to. The sins of the father are visited upon the sons for generation upon generation.

Raw moment over, for now.

Going to take care of my kids, too, and feel the other stuff, too--gratitude, forgiveness, joy.

Perspective: Many other lives have been lost and stunted and destroyed, to varying degrees, by human stupidity as well as fate, chance and. . .more human stupidity.

But it goes around and it comes around, all of it. I no longer know when or how, but I do believe that it does.

Looking for my sugar this a.m., then lemonade this afternoon.

Amber

Thanks Julie for the soul scourge this morning! ;-)

This post is exactly what it feels like to have a child with autism, especially in the dark times. People who've never experienced it firsthand just can't understand. I don't fault them. I thank God for people like Fiona who posted a comment below, who take the time to listen and care.

BTW, when my son had to have major surgery at 3 months for intestinal malrotation, I didn't even cry. The Dr's saw it, could fix it and life goes on, problem solved. With autism, I haven't stopped crying.

JENNIFER POLAK

Very powerful and moving. People don't WANT to know how difficult it is. It just makes them feel uncomfortable. When someone asks me how Walter is doing, if I tell them THE TRUTH, that he is brilliant but alone, that there is treatment A or therapy B available for kids like him that I can't offer, they give me some canned ass response like I'm sure it will all work out, or everything happens for a reason. I WANT TO SCREAM: WHY are you so sure it will work out??? WHAT fucking reason??!!! All the other kids get sick and they get treatment. What exactly IS God's plan you are so sure he Fucking has? And am I allowed not to agree with this "plan". Let me come up with a PLAN for you!!!
Thanx, nowhere else can I get things like that out but in the presence of autism parents.

bonnie

Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one.

So true. Just expected to keep on, keepin' on.

Heather

Julie, this was amazing. Thank you for putting on paper what we all feel inside.

Amy in Idaho

Wow - I don't know if this is exactly what I needed to read first thing this morning or exactly what I didn't need to read first thing this morning. Tears and snot running down my face while my little one screams because the morning routine is not quite as routine as he needs it. This is so powerful because it's exactly how we feel and it's exactly how we live everyday.

Kim - it's definately time for 'take your kid with autism to work day' (that is, if we could still work because meetings and appts. didn't take all our time) and I also think it's time to start bringing our kids to IEP meetings, public meetings where we testify about how cuts in services affect us, meetings where we talk about how insurance discriminates against us etc., etc. etc.

Thank you Julie for your brutal honesty and for showing your rage.

Diane

Julie - the most honest and real post I've read in a while - all the autism naysayers should be required to read.

Our issue is that our "bump in the road" not only causes the wheels to fall of, but the engine, electrical system, transmission and muffler to all go haywire and no mechanic or GPS system can fix!

Too many people do think that this is a temporary condition, yet we know its lifelong and debilitating.

Jeff

Wow - that was powerful. Thanks for sharing - I can definitely relate. Continue to hang tough.

Laureen Forman

Thank you for this article. I, too, probably should win an award for not breaking down and telling it like it is to friends. There is work to be done and we must march on - no matter what. I distinctly remember the day that I cried for all of the children in the world who are affected by some type of neurological disorder and get sick because others don't realize that the pharmas have created this. I cry thinking at how lost and scared they all must feel on a daily basis and more often I cry thinking about who will love them when their parents are gone (but of course, especially mine). It is a generation of children and it makes me even sicker to think that there will be more to come to join our ranks. It's silent war that rages on in the world and I want to scream every time I take one of my children to the Ped and hear an infant crying after shots - makes my heart bleed and I pray that their child will not be affected even though I don't even see them. I just want this to stop and not have anyone else have to endure the pain that I have because it's just not fair and I would not wish the devastation that I feel every day on anyone. Thank you for putting it into words everything that I feel and never show except to very few!

Gabriella

thank you Julie. You are a great voice.
xo Gabs

Benedetta Stilwell

This article was very, very good just like everybody here said. You state it how it really is- like a soldier in the trenches! You, I think have had it rougher than me and I am so sorry. A divorce, much more expense, and doing your own medical test with blood all over you. That is really as bad! I am so very sorry---And worse of all you grieve for what should have been. I understand that grief.

The other curse words means more however, Damn and hell means- may those that are responsible for this thing go to a very bad place, forever! The f word refers to sex, and your piece as great as it is --- would have been just as good without the f bomb.

I know, I know I am a prude, can't help it, I am a product of my environment. I can't even watch Shep Smith anymore after Mark B directed me to a certain You Tube where he used the word!

Theodore Van Oosbree

The other day my doctor asked me how we cope with having two teen-aged autistic sons. I told him we basically act as if they were normal (to the extent possible) and keep in the back of our minds a tiny hope that one day they will recover. We have made a virtue of that old vice self-deception.

Adrienne

Hands down, one of the best pieces I've read in 2 1/2 years. What's moving about this piece is the fact that you can't hide your emotion from yourself while reading it. But day in and out and to the rest of the world? Necessary. No one else but the people here know what it's like to pretend to continue living, getting together on rare nights out with girlfriends, half-listening to them and all the while thinking "My kids are sick. I'm not through with the blood draws for the GI workup. I wonder if Jack will go out the back door in the middle of the night while I'm sleeping?"
Thanks, Julie, for reminding me that those feelings are always with me. It gives me strength and reassures me that I'm doing the right things.

Debi Lonardo

Thank You, Thank You, Thank You for putting into words my every thought, feeling, emotion...At the supermarket the other day the clerk looked at my son then at me and told me how BEATIFUL she thought autism was!!!!! I'd like to bring her this article.. Stupidity runs rampant sometimes.

jen

I love how you tell it like it is. It is refreshing.

Penny

Still pondering this post.

I don't feel so alone in the world when I know how clearly another mom understands the emotional roller coaster of warrior mothers. I so strongly identify with Julie -- stuffing the emotions down and getting on with business only to have the emotions come bursting out with such force that I do not own the strength to stuff them back down for some time.

Teresa Conrick

I didn't expect this, Julie. I thought it was going to be more of an "in your head" read rather than an "in your heart" experience.

I started to read and just lost it...because this is my life- lost my daughter, my marriage, my family and friends as they don't "get it", lost my past, my carefree nature, my old beliefs, my faith in our American medical practices, our government, our legal system....as REM said.."losing my religion".

I also try to be strong until I just can't take it -- we are all human and autism is just about the most piercing human loss that one can imagine. You have a beautiful child who changes into a different one, a sick child, and then you are told "it is autism and it just happens, and it is just a coincidence that it happens to ALL children at the same age and there is NO known cause- so go deal with it as no one is going to help ." As you pointed out, we do not get much sympathy. Meg is so sick yet because she is not in a wheelchair or feeble in her body, she gets no compassion nor do I.

One of my own sisters asked me "why are you doing this" meaning trying to heal Megan, research, basically, my life now.....as her idea was to find some type of place for Megan now and not deal with her. It is a denial and a way for HER to escape my pain... How the hell could she even think it let alone say it?

I have tried to educate these immediate people in my life but to no avail. I am done as you cannot make a person have compassion and empathy. I had been on a Teresa-made island as a result and the bridge that saved me was the internet, compassionate autism parents, strong advocates, never give up researchers and doctors, and a place deep in my soul that glimmers hope for Megan and all of these kids. Hope for healing, hope for the financial means to achieve it, hope in our passion, hope that our continual efforts stop this epidemic, hope that collectively, treatments will restore and regenerate their bodies and minds ,and hope that this atrocity will be recognized finally and those who have perpetuated it are held responsible.

So thanks, Julie. I hate crying as it makes me feel like I'm about 5 but it is part of this autism package and if we don't let ourselves feel the pain and instead stay numb then we won't be able to feel the hope, the passion and the power that we all have.

Melissa D

Thank you Julie for telling it like it is. I could relate to so much of what you wrote – “F” words and all. Though it made me cry, it is comforting (yet so maddening) to know many others feel the same way…

Kelly

Brilliant, every word, every visual, every emotion. We too are incredibly lucky, endlessly grateful but the losses are glaring. The monster within still rages. Nice to know we are not alone.

emilysmom

I have a 10yr old daughter with Autism. Thank you for putting in writing exactly how I feel about it..I can't stop crying. Everything I ever believed in changed forever too..God, country, marriage, family. I blame myself everyday for letting "it" happen to my daughter and grieve for the life she and I lost maybe forever. Thank you again for saying what I never could.

kim

I agree with a mom in TX. This absolutely took my breath away. I would never have been able to put into words what you have said here. Thank you, this is brilliant

Mary R

I had a conversation about how my sons cannot digest food and have been on a liquid diet for almost a year. And how even the best doctors don't know what going on, my sweet wonderful friend said "But aside from that, they are doing well?" I had to tell her that no, it is a big deal, not being able to digest food? What if they got seperated and there were no amino acid based formula?

Oh, yes and all the sympathy I got when my son needed surgery for a broken elbow. It was like a pin prick compared to everything else he has gone through.

Kent Heckenlively

Julie:

I am so happy you are writing more articles. I still remember your piece, "The Family Doctor" so well. You have a unique, honest, and original voice and I hope you use it as often as possible.

All the best,
Kent Heckenlively

Penny

Their side assumes NO RISK whatsoever.

My child assumed all of the neurological risk, my husband and I assumed financial risk, and my family "lost" emotionally, psychologically, socially, financially, etc etc etc, when we signed the form and held our child down for those shots.

Our health insurance company sent us vaccination reminder cards--but they failed to tell us the RISK was that they wouldn't help us undo the damage if our child was injured. They've refused to help pay for ABA or speech therapy or vision therapy or RDI or biomedical treatment and offer very little OT or chiropractic.

We didn't know our school district offered something more like special ed daycare (2.5 hours a WEEK of services in a group the birth-to-three program, and 15 hours a week in a group from ages 3-6).

We didn't know we wouldn't qualify for assistance of any kind...no social security, no respite, nothing.

If the medical profession, the phramaceutical companies, our behavioral and health insurance, plus society (from taxes for programs to help our kids) would bear some of the FINANCIAL risk, I think the emphasis on "lets vaccinate regardless" would change.

And if someone had spelled out exactly what the risks were to my children and to our family, I WOULD HAVE REFUSED EVERY SINGLE
VACCINATION.

Julie, you've done a fabulous job spelling out the definition of the RISK we take when we blindly vaccinate our kids.

I hope people hear you. I wish I'd known 12 years ago.

Penny
www.notnewtoautism.blogspot.com

Charlie

I read AOA everyday and never have I've been so moved as with this article. That fucking "bump in the road" is more like Mount Everest...but we climbed that rock in spite of everything and everyone. Good job Julie articulating so well what many of us feel and want to scream.

Jack R.

I really think you captured what it feels like to feel guilty for sucess and devastated by failure all at the same time.

Amen.

Fiona.S

Wow. What an amazingly written article by Julie. I sat reading it with my hand over my mouth in horror (at what is being done to these poor poor children and their families) and tears in my eyes.

I know it doesn't change anything but I still want to say that some of us (outwith those who have to know because their children have been damaged) know about what is happening and we don't doubt for a moment that vaccines are to blame. We will not be quiet on this subject.

God but my heart goes out to you, I can only imagine your pain and anger.

The next time some uninformed idiot crassly posts on a discussion forum that they would rather risk exposing their child to autism than to measles I will direct them to this outstanding piece of writing.

Elucidatus

This is the best fuckin story I have ever READ!!!! This is what its like for a parent every day... Every fuckin day! I too wasnt always like this. Bravo Julie... BRAVO.

Stagmom

I think it's time for, "Take your autistic child to work day." What do you think? We tend to hide our kids to some degree - avoid situations that our kids might not like - it's not that we're embarrassed of our kids - I know I'm not. But I pick and choose where and how we go. So, what do you think? And perhaps we need a day in DC where instead of prowling the streets, we prowl the halls of the Senate. Trailing GF snacks, looking for bathrooms, dropping Thomas toys behind us, shouts and scripts echoing off the walls. Maybe a big bowl of Wheaties with milk for the kids who are GFCF to really show the folks who vote for us what life is like. We'll leave a bottle of Clorox and a mop for Pelosi on our way out the door...

A mom in TX

Oh my gosh, Julie. This took my breath away - I read parts of it aloud, voice cracking, to my husband. This is so beautifully raw... thank you so much for writing.

Jack R.

Holy crap.

Well, that's it. When we shake our heads and say "I just think they really don't get it," that's want we mean. All of it.

I'm glad I happened to read this one at home because I'm not too fond of crying at work.

FedUp

I should've gave an example for crappy parent, stupid kid. Spring day in busy park, my autistic son punches a pregnant lady in the gut, she freaks of course. I'm horrified and spank my son with 100 people staring at me, then I drag him screaming back to the car.

FedUp

I have 2 partially recovered boys ages 9 and 10. I've got a friend with 9 year old twins that have very severe autism, probably the worst I've ever seen. In some ways he's lucky, and others not so much. When people see his kids they immediately know there is a huge problem, when they see or interact with my kids they think: crappy parents, and stupid kids. The problems that remain are: reading comprehension, low IQ, attention, and emotional instability. But at least I’m not cleaning crap out of carpets every day anymore.

Holly M.

As my 15 year old daughter would say, "Same."

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