Autism Perception: "A Bump in the Road?"
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.
I found your Bump In the Road piece heart wrenching and very important. I celebrate your putting your experience into words. No acceptance/forgiveness can come before the 'real' feelings, the uncomfortable and inconvenient ones, are 'out of the closet'. To me, the agony, day after interminable day, of remembering the Eve who is no longer must seem worse than her actual death. Well I know the stress that such a situation places on everyone: the marriage, the siblings (whose trauma, although different, is real), you the mama whose heart is in tatters. I only hope that by now, Julie, you and your Evie have found a CEASE Therapist in your vicinity: the work these folks are doing is the most effective and cost-effective there is. They are on FB. Blessings on you and yours. Hank
Posted by: Hank deDank | July 19, 2016 at 06:46 PM
Thank you for showing me what you have through your words. Thank you for being willing to show what happens for you. Thank you for changing my life with your words. Thank you for changing me in a way that I can care more for you and anyone in your situation and many other. You, your experience is a privileged gift that you have graciously shared. I honor that and thank you that you have trusted that you would be received or even if it was out of desperation.
I will pray for you with the most earnest of pleadings to my Heavenly Father that you will have exactly what you need to make this situation what you need it to be, maybe that means outside circumstances might change and maybe it means inward circumstances.
I hear you and I see your pain. You are now forever in my heart. Saying a prayer for you, dear love.
Posted by: Becky | June 04, 2016 at 09:28 PM
Dear beautiful strong woman who wrote this,
This is thee BEST thing I have read so far on autism. It's pace its power and impact is fantastic!
Had I heard you read this to an audience I would stand and applaud you till my arms gave out.
Posted by: Melissa | June 04, 2016 at 04:16 AM
Excellent description of the pain and anguish. An outward expression of an inward battle does not mean there has been no acceptance. Acceptance actually comes by addressing ones feelings, not denying them. And Autism is not 'one size fits all'. Cheers to anyone who finds their child's autism is only a minor inconvenience. All autistic diagnosis are not equal. It is a spectrum of disease with varying extremes, and there will certainly be children who are not nearly as severe as some. So please, readers, do not compare your experience with the writers and further condescend. Really, as a person dealing with a disease that is a 'spectrum' illness, you ought to know better. Many thanks to the writer for honesty.
Posted by: Lisa | June 03, 2016 at 11:17 PM
Yes, acceptance - till the next new development for it is an on going changing - adding new symptoms through out life.
If you don't have your health - you don't have anything.
Posted by: Benedetta | May 04, 2015 at 12:45 AM
I am very sorry that life hasn't been fair to your daughter and that you were given the task of the soldier mother .
I admire everything you've done so far and can never imagine strength needed for it.
But at the same time I am scared of your anger, and I'm trying to understand how come acceptance never crossed your mind? It is a concious decision. Your other children, husband and you will be much happier if you chose to accept that yes, you were given the blow, but yes, you are the fighter and you'll deal with it.
Resentment will only age you and destroy you and your family.
Posted by: Adina | May 03, 2015 at 07:00 PM
Amazingly written and expressed! Although I have no children on the Spectrum, I have buried a child when he was only 16 (congenital heart defect), "lost" another to Bipolar Disorder and have one with ADD. I have not had the opportunity to raise a "typical" i.e. "normal" child. I work with families who have children on the Spectrum and I understand their grief. When son #2 was dx with Bipolar I was pissed as hell at God. How DARE He! This was 2 years after the oldest was buried--why couldn't he have put the Bipolar and the heart defect on the same child? I know how heartless that sounds, but recovering from burying a child that you know is safe and in the arms of God, is much easier than living day to day with one who is so unpredictable, impulsive and unwise,you don't know if you'll have to bury him, also. Thank you for expressing, so eloquently, the anger,frustration, exasperation, envy and disbelief we, with non-typical children have felt.
Posted by: Karen | December 04, 2009 at 02:50 PM
As a therapeutic riding instructor, I work with horses and lots of kids on the spectrum. I remind myself & our staff to never judge our kids or their parents, to keep our hearts & our minds open to them and to remember that we have them but 1 hour and the families are on 24/7. My mind boggles at the thought of the never-ending struggles & challenges faced by the children with autism & their families. The moms like Julie are not only my heroes but my teachers. I am humbled by your courage & strength. Those of us without autism in our life need to hear more stories like Julie's. I thank Eleanor (an autism mom) for sharing this with me.
Posted by: Sue Ellen Hargadon | September 17, 2009 at 08:48 AM
I have 2 sons with autism- I am so grateful every day that that is all they have- not cancer or any other life threatening illness. It could be so much worse.
Yes autism is hard. But in many ways we are lucky. I don't have the gift of a 'typical' child- Julie has two! What a blessing! I appreciate that this was a purge of feelings and thoughts, but I did not find it useful or empowering, or encouraging or hopeful. I still have so much hope, even on the bad days. My boys are beautiful, and I will just take one day at a time. Life is short. So I'll strive for the best, celebrate successes, smile when it's tough and laugh....really really loud as much as possible. As long as my boys laugh too, I'm happy. Good luck Julie.
Posted by: Kath | September 08, 2009 at 06:09 PM
That was probably one of the most touching articles I have ever read.
It ripped at my heart strings but then tied them back nicely when it was finished.
Thanks for making me cry like a baby.
Posted by: dugmaze | August 05, 2009 at 12:12 AM
Every time I want to respond to this I get so mad I want to leave the house, pull into the nearest watering hole frequented by all those whose lives couldn't be better, get pissed drunk and start a fight, instead I move away from the computer lay down on the couch and watch my 3 year-old son wreck Thomas the Train over and over, "WATCH OUT THOMAS! STOP!"
This time, my third attempt, I watched the Thomas bit and realized his play and/or speech usually involves placing Thomas or one of Thomas' friends in danger, perched on the edge of a bookshelf, falling off a cliff, driving off the track...hitting a bump in the road.
Not that this has anything to do with anything but I am able to respond to your post without going out to look for a fight.
I want to thank you for being able to put into words my own personal frustrations. I have copied and pasted it to a few people who need to read it.
Thanks again, I still want to go punch somebody, but I think I'll go help Ben get Thomas back on track.
Posted by: bensmyson | August 04, 2009 at 02:39 PM
There are days when I think I am going to scream if one more person says, "Oh, but he's doing so well."
Thank you for screaming for me.
Posted by: Trish | August 04, 2009 at 11:56 AM
Hi Julie its me Veronica fellow warrior.Say hi to Matt.My sons going into high school and we are hoping for the best but prepared for the difficulty he probably will encounter with a step up to difficult situations ,classes, peer pressure ,etc.Its a long road to travel god knows we need our stamina.We have to hope for the best but prepare for the lack of understanding, maybe we have to tell ouselves if they only knew what the reality was they would behave differently they would be more supportive and less judgemental .The path of a thousand miles begins with one footstep and we are on the journey, others they dont even see the pathway so at least god gave us the ability to see the pathway we just need the strength to continue. Keep the faith sister warrior. Veronica
Posted by: veronica milos | August 03, 2009 at 08:54 PM
I've been so busy lately that I just read this today. Julie, this is by far one of the most honest writings I've ever read. You are a wonderfully honest person, Julie Obradovic, you make our lives more bearable. Thank you, thank you, thank you, thank you ...
We read to know we are not alone, but we read AOA to know we are not dreaming this nightmare, we are actually living it. We are the few people that are awake in "The Matrix", everybody else is just sleeping their stupid dream, the one continuously fed by the mass media and reinforced by their comfort seeking minds. The irony is that we put up the act and do not even mention our 'little bump of a problem' to make "them" comfortable, knowing that if we dared bring it up often they'd be gone from our lives.
Posted by: WE SHALL OVERCOME | July 29, 2009 at 09:40 AM
I cannot express how much I can relate to what you said. I once had a dear friend tell me "Just don't become one of those moms who live for autism" after my daughter got diagnosed. Three years later, I still get angry when I think about that.
Thank you for your post
Posted by: denise | July 27, 2009 at 03:12 PM
Nothing I can possibly say will appropriately express my feelings about what you have written. You are my hero.
Posted by: Wendy | July 26, 2009 at 10:54 PM
WOW!!!!You have captured my daughters life also so close !! I have felt this way for years.It's not a bump its a (bleep bleep MOUNTAIN!!!!!!!!!!!!!!!) WE NEED MORE THAN GOD BABE!!! Im in NJ near AC.Be nice to start AGE OF AUTSIM suport group and protest group(IM IN!!)Im also an Artist and paint local hot spots. I sell my work in margate NJ at gift shop called Jamakin me crazy. If you want to contact me you can.(For you jersey people that feel the same I think we need this.
Posted by: Debra K | July 26, 2009 at 12:33 AM
THANK YOU!!!!! I have two bumps in the road in my family. No one can ever understand until you live it. Anna
Posted by: Anna Roberts | July 23, 2009 at 11:25 AM
Our lives begin to end the day we become silent about things that matter.
Martin Luther King Jr. (1929 - 1968)
You speak loud, you speak the truth, and it really does all matter.
Posted by: jc capurso | July 22, 2009 at 09:36 PM
After reading your article, it has taken me days to gather the courage to type just a few lines...
While reading it, I shed an insane amount of tears that i did not even know I had--, and when i finished it, i felt i had so much to say.
But now, there are only a few words in my heart:
Thank you! Thank you for writing about "my" feelings.
Thank you, thank you, thank you!
Posted by: Erika | July 21, 2009 at 08:24 PM
Very, very powerful.
Posted by: mom4truth | July 21, 2009 at 06:11 PM
I will trust that this is a legitimate question and you are not just trolling.
How can you possibly "acknowledge the possibility of a genetic component" in persons you know with ASD? Are you a geneticist, or a doctor? Or do they all have brown hair or have ancestors that are European? How can you possibly know what their genes look like????
You cannot have a genetic epidemic. Even the top scientists in the world acknowlege this. Genetics don't explain going from 1 in 10,000 to 1 in 150 in two decades. That is absolutely not possible based on genetics alone. This argument is used as a smoke screen to excuse vaccines from blame for poisoining an entire generation of children.
I am sure you have heard the saying "Genetics load the gun and the enviornment pulls the trigger." Genetics would explain why some kids are more susceptible to vaccine damage, sure. But the vaccines are STILL causing the damage.
We have the sickest nation of children on the planet when you factor in all the kids with ADD, ADHD, allergies, childhood asthma, or any other myriad of developmental disabilities beyond the autism spectrum.
I guess we just all have bad genes in this country, and no other country shares this problem? Can you see how silly that sounds?
Posted by: Not just bad genes | July 21, 2009 at 05:25 PM
Your anger, anguish and even rage are understandable. Ignoring the possible if not probable genetic links when it comes to ASDs is not. My life has been touched by a number of people who are on the spectrum and I must acknowledge the probability of a genetic component in these people. Please understand that this is not a "crank letter" and I am not seeking to marginalize or negate your pain but I just don't understand ignoring a legitemate cause of ASD.
Posted by: Nynah | July 21, 2009 at 01:54 AM
It's been three days since this essay of Julie's appeared, and her words and the emotions they evoke have repeatedly been rolling around in my head. How does one describe a person whose skills exceed descriptor such as "excellent writer"? The word "writer" may imply someone who merely observes, or perhaps creates fiction, so it seems inadequate.
Julie has shared so much more of herself and her world, with which so many readers have identified. Touching hearts takes a rare talent.
Posted by: nhokkanen | July 21, 2009 at 01:05 AM
As a parent of an autistic child, I will tell you what you can do as a family member/friend to step up and help. I commend you for being concerned.
You can offer to babysit for your friend or relative so they can take a break and go for coffee or something. Maybe spend some time with the child BEFORE mom leaves so he can get to know you. No one ever wants to babysit children like ours because of the work involved and not everyone can afford respite care.
NEVER EVER trivialize the pain of this or ridicule what the parents are choosing to do to help their child, biomed or not. Never say "at least" or "it could be worse". When you are at rock bottom, trust me, you cannot think of any way it could be worse. My daughter did not sleep more than four hours a night for over three years. I was beyond despair, I was suicidal. Seriously, sleep deprivation is a form of torture. Biomed gave my daughter (and me) back our restful nights. But those nights before we began it were my darkest hours.
Get involved; go on autism walks, donate to organizations like TACA or The National Autism Association. I always tell my family who is far away and cannot help that even if you cannot be physically present in my daughter's life, that you can give to organizations that are honestly trying to make these children's lives better.
I thank you and I am certain my daughter (if she could talk) would thank you from the bottom of her heart as well.
Posted by: Chris | July 21, 2009 at 12:36 AM
Julie- You captured and expressed the rage/hurt/pain/sadness/joy exquisitely. Brava.
You should send this to your friend so she can know the reality of the "bump".
Posted by: Mary Southon | July 20, 2009 at 09:40 PM
Beautifully written, Julie. As so many other people have said, your words are exactly what I am feeling but just don't always say out loud. Thank you so much for sharing this.
Posted by: Cathy Jameson | July 20, 2009 at 09:22 PM
As an outsider, I feel helpless. What can an outsider do to help? Especially when this outsider has family that is effected.
Posted by: deeply concerned | July 20, 2009 at 09:05 PM
I can very much relate to what Julie wrote; hiding the pain , and the desperation of searching for what will help and worrying that you are not able to afford or provide the one thing that might make a difference.The lack of playdates; trying to work out how to explain to my 6 year old son who wants a brithday party that it is just going to be family. He watched all the other school kids have parties to which he wasn't invited; and I don't think any of his school mates will come to his. The boy who "talks like a two year old" is not cool.And is bullied. Even some other kids' mother complained about my son being called names( bless her) but nothing is done.
This is not just an "autism" phenomenon. My son does not have autism. (Have a quick look round at the mall next time a kid with cerebral palsy comes by in a wheelchair, and look how everyone moves away as if the poor kid had the plague.And if you want to watch a child become invisible in a group of kids, stick a hearing aid in his ear.Apparently hearing loss is contagious too.)
It is however a "chronic condition" phenomenon.There have been some wonderful doctors in our lives, but most of the progress my son has made has been because we looked for answers when most of the physicians were more than happy to diagnose and forget.
So please don't isolate us other special needs parents; we may have more similarities in our lives than you think.
Posted by: hera | July 20, 2009 at 08:30 PM
Hello Julie, As a read your article, I closed my bussines to keep on reading,i wanted to be alone while a read and just a broke on tears because what you said is what my wife and I feel, not only that we also have to hear sometimes that we are getting a punish from god, because we did something wrong before, for us is real hard to make friends with other families, We understand you,And something good has to come out of our lifes, And We are on the search of that, helping our autistic children, be there for them.
Posted by: Jose and Giovanna Pueyo | July 20, 2009 at 06:54 PM
Thanks for saying everything I feel but am not brave enough to say. Like you, I probably deserve an Oscar for hiding the pain, but that doesn't mean it doesn't hurt.
I hate it when people say that just wait until he is grown up and I won't believe that I worried so much. Are they serious? At this point, I don't know if he will even be able to live on his own! I think people have no idea what to say.
Posted by: Jen | July 20, 2009 at 06:48 PM
BEST ARTICLE EVER! Thanks so much for saying what I have wanted to so many times. I posted this link on my facebook and how most of my friends are brave enough to read it all the way through. I partilarly related to the end where she talked about how we as parents of children with autism rarely let the 'outside world' see the real life pain of this life with autism.
Posted by: Karen Jaggers | July 20, 2009 at 06:36 PM
Julie - thank you for this piece. Thank you for exposing the brutal raw truth. Thank you for your refreshing honesty. Thank you for putting into words, so eloquently and simply, what so many parents live day in and out, and what those on the outside just do not understand.
Blessings to you and your family.
Posted by: Lisa | July 20, 2009 at 05:55 PM
This is the reason I would say that sometimes I would rather my son have cancer than autism:
If my son had cancer then the doctors would know what to do. MY job would then be to sit by him and love him and chat with him at his bedside and while the experts do THEIR job. In autism, my job is to be the doctor, find the answers to help him, and hope maybe one day he'll chat with me. Autism moms dream of a day that they can walk into a doctor's office and the doctor knows just what to do. What a miracle that would be. We have a HUGE weight on our shoulders. Cancer is of course AWFUL, but what if your kid had cancer and the docs just threw their hands up and said, see ya!?
Another thing that always bugs me...your pediatrician finally admits it's PDD or autism, sends you on your way with your scrip for speech and OT. And guess what...that SLP and OT didn't study for a minute about what to do with my kid. I'm LUCKY if they have taken it upon themselves to find training or have experience. All these states trying to pass waivers and insurance for ABA, but guess what? There won't be enough service providers to go around. Lotta good that insurance'll do ya.
Those are my latest rants today. Whew I feel better. Thanks Julie.
Posted by: kim | July 20, 2009 at 04:37 PM
Yes, this is what it's like for 260 000 USA children and with 25 times as many called by other names.
AND THEY KNOW.
The vaccine regulators KNOW.
The vaccine makers KNOW.
The USA Government KNOWS.
And what are they doing?
Vaccine Regulators PAY for "research" to show they don't know.
Vaccine makers pay Government so they will "ignore" 1 million SIDS and 12 million neurological ill children.
And the Government Senators take the dirty money and invest in vaccine shares and BIG pHARMER.
I just pinched myself and am awake and alive and this is indeed the rerun of Al Capone "politics," "law," and "common sense" et Al but PROHIBITION is now urgently NEEDED:
Of DANGEROUS Vaccines:
And brain destroying thimerosal STILL in vaccines for babies.
Posted by: John Fryer Chemist | July 20, 2009 at 03:47 PM
Thank you Julie. You put to words my silent disbelief that I too often fall into when interacting with someone for whom 1 in 150 is just a statistic. I cried while I read this because it made me think of the things I try not to every day- what would my son have been like, how much do we have to take away from him so he can live a life, the worries that someday my daughter who idolizes her older brother now will someday resent him terribly, how much people turn away when they hear the "a-word" without ever knowing my son. One of the things I appreciate most about other parents of children with autism is that we can say these words to each other, that might shock "typical parents" and we all get it.
Posted by: mom of a recovering boy in MN | July 20, 2009 at 03:22 PM
As I read your piece, I had so many emotions that I just felt that I needed to resond. I have been there and I have lived the rollercoaster of emotion that you wrote about, and I have cried, sobbed, screamed, and been numb throughout so many similar eperiences. My daughter is now 27 and she does not have autism, she was born brain damaged, we have lived the hell that you speak about and continue to face challenges every day. I also have a son who is 25 and a cancer survivor, so I take offense when I read someone say I would rather my child have cancer. I watched my son shrivel up during chemo sessions and watched him cry after major surgery that sliced him from groin to sturnum and he first saw the scar. We all have crosses to bear in life, and although yours is horrific and life changing, you have survived and so has your daughter. We don;t know why things happen, we can assign blame to many things, but it doesn;t change anything. Whether a child is autistic, brain-damaged, sick with cancer or has downs syndrome, we need to treat all with dignity and respect and stop isolating the conditions and consider doing right by all special needs people. [email protected]
Posted by: jane giamalvo | July 20, 2009 at 03:18 PM
Julie, this is such a powerful description of what goes on in my head that I'm always afraid to say out loud. Thank you so much for putting words (particularly swear words) to my feelings. I try to let go of feeling cheated and focus on the positive but some days are certainly tougher than others.
Posted by: Laneysmom | July 20, 2009 at 02:52 PM
"Only with autism do parents get bashed and accused of a lack of love for treating medical issues."
Only those who live with it realize how medical issues makes the autism itself worse, how one feeds upon the other.
This is something neurodiversity,and their fellow travelers in the medical professions will never get.
Posted by: Roger Kulp | July 20, 2009 at 01:09 AM
Thank you for saying so bravely what alot of us moms wish we could say, and saying it so eloquently. No matter how autism has affected you life, these words resonate and hit alot of nerves.
Posted by: Vicki | July 19, 2009 at 11:14 PM
Julie, A few years ago I attended a meeting where a priest talked about being brave. This is what you are and more. I try to be brave every day and continue to heal my very sick 12 year old. I think I feel exactly like you do about autism.
I think that it was not ok for my ex-friend to tell me my kids should never have kids because it is genetic and we need to break the chain. Well, thank you very fucking much. I will be sure to tell the whole family to discontinue procreating.
I think that I would rather my child have cancer. I know this is very controversial, but no one, no one was there with me as my son layed in the fetal position night after night with curled toes and fingers, in so much pain he couldn't even be touched. There was no hope and no help at that time. And I prayed time and again for God to just take him home. I would have rather given him back to his creator than to have him continue in such insurmountable pain.
I think that it is wrong that so many that were supposed to be there for me and my children have scattered. I think the judgement bestowed upon us by friends and family is apalling. I think that rude and insulting voicemails left for me because we didn't attend recent family functions are the product of ignorance and selfishness.
I think that everything I do is for my children and I will continue to be brave no matter what. My son has a long way to go. He is still pretty severe, but sleeps and is progressing.
I think, somehow, we will be alright and maybe we will have just a little bit of peace.
Posted by: Carly | July 19, 2009 at 11:06 PM
This is truly awesome Julie. I think probably one of the best things I’ve read here or anywhere on autism.
The most horrible period of my life was when my oldest child’s gastro-intestinal specialist first said the word ‘autism’. Altho she was never ultimately diagnosed with any ASD, at the age of three there were serious concerns about her development. At that time I put her on a pretty strict casein free diet for awhile(I hadn’t heard of GF at that time) and I often wonder if things might have turned out very differently if I hadn’t. Altho she is fine now at the time I seriously didn’t know if I might end up raising a child with autism, possibly severe. She was completely uninterested in children her age. She was unresponsive to questions except to parrot back whatever you had asked her. She had bowel movements sometimes every ten days. She would rock back and forth in an effort seemingly to withhold them. The pediatric nurse practitioner said that this was sexual. Very weird. I didn’t buy it but then I’d gotten used to being treated weirdly at the pediatrician’s office. For example, the shouting out conversations back and forth because from the day she was born my child literally screamed as if someone had stuck a fork in her, every waking moment of the first three months of her life. Nobody ever acted as though this were odd. Nobody ever acted as though the diaper rash that turned her whole rear end bright red for days on end was odd. Nobody seemed too terribly concerned that she had bms once a week or so. “It happens, sometimes”, they would say, with a shrug.
When concerns about her development finally got serious, we were asked if she might have been sexually abused. “Nobody has ever been alone with her except my husband and my parents,” to which the Pshrink replied “is it possible that they might have been doing something?” My husband told her that if this broke up his marriage he would sue. (I think what he probably said was “I’ll sue your a$$”) It didn’t break up our marriage. I said “there isn’t any possibility that hasn’t crossed my mind. But no I don’t think so. She doesn’t seem to be afraid to be alone with either my husband or my parents. Wouldn’t she?” And it’s true, just about any explanation imaginable for her weird behavior passed thru my mind at that time, but never, never in a million years would the idea that she might’ve been poisoned by her Doctors entered into it.
As horrible as those months were I know that what we went through is nothing, nothing at all, compared to what it must be like to watch your child disappear and not return.
I’ve often heard that it must be one of the hardest things imaginable, to outlive your child. But I’ve often felt that it must be a thousand times worse to have to watch your child disappear into autism. At least when your child dies, although I suppose it is something that you never really forget or recover from, at least I think it must get somewhat easier over time. But to have to be reminded on a constant basis that the child you once had is gone—the smiling, happy, laughing, playing, loving child that you once knew—that just seems unimaginable to me. It’s no wonder so many people just turn their backs on those dealing with autism, I think. It is too horrible of a thing for them to face—the possibility that their medical system could be responsible for something like this, that their society could have allowed something like this to happen.
At any rate although I thank God that my children are all relatively healthy, those months a decade and a half ago when my child was three are not something I can ever forget.
Posted by: Bad apple | July 19, 2009 at 09:02 PM
LOL @ "get over yourself".
I don't know how one person could have so much energy to make up so many different alter-egos so that it looks like different people posting in the comments section. Oh wait, people do too do that. Because the ND bloggers do it all the time.
Posted by: Learn to read | July 19, 2009 at 05:42 PM
Chris - Angela is calling you AND Teresa "Julie" on her silly blog. LOL. She has these rebuttals that I am sure she thinks are very clever, but they are all aimed at Julie as she apparently thinks everyone that comments on this piece are Julie in disguise.
In any regard, Julie rocks and don't pay attention anymore to any of this silliness. They are the "stupid people" referred to in the piece that just try to screw with parents who are recovering their kids.
Posted by: Get over yourself, my dear | July 19, 2009 at 04:30 PM
Julie girl - you took the words right out of my brain. When I do let the monster out, it is awesome to behold. My daughter's name is not effing collateral damage - it is Megan and she is a love. Sixteen years old tomorrow. Still searching for true healing, but much further down the road to good health than she was at 2 1/2 when she was diagnosed. My kids jokingly refer to me as "Luna Lovegood." She has become my favorite character. I have so much buried anger inside from the years and years of condescending behavior from doctors and other people who really don't know squat about autism - only what they have been told and are happy to pass on to me "because they know what is best for my daughter." I would rather have indifference than ignorance. It is so hard to comfortably talk about vaccines and other "alternative therapies" to people who are still in a great comfort zone with western medicine. I feel like a UFO-spotter. Western docs are up in arms with chelation therapy, HBOT, homeopathy, et al as "unproven therapy," yet they are allowed to administer multiple vaccines without one safety study. Funny how that works. Thank you Julie for making me feel a little less alone. Thank you.
Posted by: Jill Fenech | July 19, 2009 at 03:00 PM
I'm a newbie to the site, but try to educate myself on all these matters to be the best advocate for exceptional children that I can be. I knew vaccines were an issue when I was pregnant with my first child — in part because of the liberal resources available to me in Berkeley area. So I've bucked the trend as much as I felt I could... asking the pediatrician to break out MMR, even if I had to make 3 appointments; putting off shots as long as I could, and staggering them; and filling out school forms for reasons why we don't have the hep shot yet. I continue to doubt the mass media reports that a vaccine connection has been disproven.
Please do say or link to how any of us could support the effort. The story is moving, but what's my call to action? There's got to be a compromise between no vaccines and anything the pediatrician is told to poke into our babes per an ill-conceived schedule. Whatever best alternative info is out there, I could promote it.
Posted by: sonia | July 19, 2009 at 02:25 PM
Wow, Chris - well said!
Posted by: Twyla | July 19, 2009 at 02:22 PM
BTW, I met a teacher the other day who has a severely autistic neice who cannot speak well who is now reaching adulthood and will have to live in a group home the rest of her life. She is also going to be put on birth control so she does not get pregnant because she cannot communicate very well and could quite easily be raped. The birth control can stop her from becoming pregnant, but it cannot stop some sicko male aide from raping her. This is that family's reality. Guess what? I asked her aunt how her family feels about finding a cure for autism, and YES, they would like a cure for autism so she does not have to live with a condition that could lead to her being taken advantage of like that.
I would love you to stand in front of this teacher, who spoke fondly of the cute things her neice did when she was little, and tell her that her love for her niece is not genuine because she wants a cure.
Posted by: Chris | July 19, 2009 at 02:17 PM
LOL, I just visited Angela's blog and little miss "love is all you need" cannot even read!
She is quoting me as Julie. My name is Chris. Different child, different issues. LOL.
She is using my post to make fun of Julie because she thinks we are the same people. Ha ha!
And of course using the same "your child just outgrew these issues on her own" excuse. LOL! Yes, that's right, her private parts getting better within three days of treatment with Nystatin was all a coincidence. Sure. That would have happened anyway.
Of course reminding me that wanting her to not have autism means that I do not love her. Not wanting her to have to live in a group home where she could be raped or abused when she grows up means that I do not love her.
Thank God very few people are listening to that nonsense. I have read far more blogs from people who are GLAD Julie was honest.
Posted by: Chris | July 19, 2009 at 01:47 PM
Julie, I haven't posted here in a long time. I guess the feeling of defeat is overwelming and I cannot hardly force myself to click "post a comment".
But, I am glad today to have read your piece. And I am glad that you can say Eve is recovered. If you don't mind I am going to print this and give it a couple friends that I have that are "on the fence" with this topic. Maybe emotion will open eyes where science (for whatever reason) is failing.
Chin up, you are a warrior mother and you went after Eve and were able to bring her back....thank God for that blessing. My son, too is significantly better....but that doesn't take away from the anger I feel, as you said you do too, when I think of, exactly as you put it, wanting the 1st edition copy of your child, rather than what we have. I don't mean literally wishing I didn't have Ellis, but I mean I will always wonder who he would have been....always wonder what he might have accomplished. This week ultimately was great...His DI lovingly looked at me and said, "you know, he might marry one day". And yes that is joyous. But my 1st edition child would have married without that seeming to be a great feat.
Thanks for sharing your most painful moments and inner-most personal feelings about being a warrior mom.
Posted by: kathleen Heltsley | July 19, 2009 at 01:38 PM
You have nailed it on the head. This is exactly what I feel every day and have expressed everyday. No one ever knows what we go through unless they actually live it and breath it every single day of their lives. Thank you for expressing it exactly how I would have.
Posted by: Raquel | July 19, 2009 at 11:35 AM
I commented before on this, and I feel the need to comment again. The ones that have commented in a negative way about your post, just don't seem to understand what you are trying to say. Of course that is just my opinion.
I sent this post to my daughters, my sisters, my mother and father,and my husband.
My youngest daughter sent me a response back at 5am. She said she cried her eyes out while reading this. She realized that what her sister goes through everyday, is like nothing that she can imagine. This was coming from a 21 yr old mother that has a new 4 month old baby that has had enough problems of his own. As much as she has been going through, she prays that there will be a light at the end of that tunnel, but she also prays everyday for a day of peace for her sister who has been dealing with Autism for 4 years now. She told me that this gave her an insight as to what her sister really feels. It made her understand the bad mood and negativity that her sister sometimes feels. It also made her happy to be in a family that will do whatever it takes to love one another...no matter what.
My Grandson is still pretty much non-verbal. To hear him call me Grandma, would be the best thing that has ever happened to me. People do not understand how a little thing that they take for granted..is such a big deal in someone elses eyes.
I use to keep my Isaac a few nights a week while his Momma worked. I saw how he went from a smiling, inquisitive baby, into a toddler that was removed from the world. As much as I know how hard this was for me, I still can't even begin to imagine what it was like for my daughter.
You have brought a new insight into this world of Autism that I am sure most of us have wanted to say, and you should not in any way feel ashamed for your feelings. Your feelings are your own, however, I think that you have come to know that your feelings are also that of many of us out here that are dealing with the same thing.
Posted by: Isaac's Grandma | July 19, 2009 at 03:06 AM
Oh, and for Angela, I just went and looked at your blog, BTW. This is going to be long, so please forgive me.
You wonder why we are so angry. Why we slap your hands away when you "reach out" to us.
You pretty much call us liars, that's why. You say that our children's problems are not real. Their digestive issues are a figment of our imaginations.
I am actually not going to touch the whole vaccine argument. My own child's case is much more complicated than that so I am not even going to go into the "cause" arguments with you.
Yes, doctors talk like that about digestive issues when it comes to children with autism. They do it all the time. For my daughter it was yeast infections that anyone with a pair of eyes could see. Her private area was red and inflamed. She had a red ring around her anus and dug at it until it bled. She smeared her poop all over the walls and rubbed her bottom on the carpet. Her eyes were puffy and swollen and had circles under them. She never slept more than 3-4 hours a night. I brought these issues up with multiple doctors and got no help. My daughter, like Eve, could not sleep unless she was in constant motion. This went on for YEARS. She spent the first hour of her morning having horrible tantrums because she never got any real sleep at night and was never rested. She learned very little at school because she was so freaking tired she could not concentrate.
Guess who prescribed her Nystatin for her yeast infection? That's right, one of those so-called quack DAN! doctors. Within three days her bottom was no longer raw and red and bleeding. The black bags disappeared from under her eyes. She slept through the night for the first time in years. It was music to my ears to hear her breathe deeply while sleeping. It made my heart sing to see her wake up every morning and give me a bright smile ready to begin her day because she got REAL rest and the REM sleep she so desperately needed.
Yet people like you chastise me for treating a very real problem she did indeed have. The camera does not lie; I have photographs before and after beginning biomed of my daughter and there is a very shocking difference in her appearance. You call people like me liars, tell us that we have Munchausen's by proxy brains, tell us that we just cannot handle it that our children are not perfect and we have no love for them so we torture them with biomed - and then you wonder why we slap your hand in anger. Could you befriend someone who ridicules you, trivializes your child's (and yes your family, when your child suffers, the whole family suffers) pain and calls you a liar? That is what you are doing.
I should also add that my daughter potty-trained after a few months on antifungals and good quality probiotics. She had no sense of needing to move her bowels before the probiotics. I was very pleasantly surprised. I was beginning to believe that she would be wearing a diaper into her teens. I am still pinching myself that she is completely toilet-trained when just one summer ago our carpets were covered in smeared poop.
By the way, my daughter is FAR from recovered. She is on the more impaired end of the spectrum. She is six and has no speech. She has no pretend play at all and is spending the summer stimming at the kitchen and bathroom sinks because she is fascinated with water.
The point is she feels better, and it is no thanks to "mainstream medicine". My anger has nothing to do with me not loving her; it has everything to do with her regular doctors ignoring her issues and treating her with no compassion.
You go on and on about how we dehumanize our children, how we don't see them as human beings and so we treat them for issues that don't exist. Honey, with that attitude, we will never be friends. It is the medical community who dehumanized and failed my child, not me, not her DAN! doctor, not the so-called "martyr moms" and "victims" here on AoA. I come here because for the first time I do not feel so alone. I know I am not insane. I know that my child's issues are/were real and so does everyone else here.
And honestly, yes, I WOULD love to see her recovered from autism someday. Will it happen? Likely not. But someone has to take care of her when I am dead. She has four siblings who I pray will always be there for her but there are no guarantees. A cure for autism would free her up to live a life on her terms and not be at the mercy of others who may or may not be kind to her.
Wanting a cure does not mean I do not love her. I am actually shocked that there are those who feel that way and did not know there was anyone who thought like that until I found ND and all their sites.
Posted by: Chris | July 19, 2009 at 01:28 AM
Wow.That's as bad or worse than anything a doctor ever told me.
Is that for real ?
Yes, Roger, that is for real.
What the ND crowd does not understand is that it has nothing to do with "not loving our children". It has everything to do with their medical issues being ignored.
My daughter had yeast infections for YEARS where she dug and DUG at her anus and her private parts until they bled. You could see how red and inflamed they were. Her regular pediatrician refused to treat them and said her constant itching with her bottom and smearing poop were "sensory issues". The only person who would prescribe an oral antifungal for her was a so-called "quack" DAN! doctor. Within three days of taking the oral antifungal, she was sleeping through the night for the first time in YEARS, the bags under her eyes disappeared, and she quit itching her bottom. She potty-trained a few months later after antifungals and probiotics.
No, she is not "recovered". She is far from it; she has no speech and no pretend play whatsoever. But dang it, it feels great to have her in less misery.
Only with autism do parents get bashed and accused of a lack of love for treating medical issues. Not with any other condition. It makes me sick. And then people wonder why the biomed camp is "so angry". Umm, you call us child abusers and liars for relieving the very real suffering of our children. I'm sorry, but those are accusations that would make a monk angry.
So shove your "you don't love your kid or see her as a gift" crap up your ass, ND people.
Posted by: Chris | July 19, 2009 at 12:47 AM
Thank you for writing this. You have put into words what I've had in my heart for nine years and couldn't share with anyone.
I'm tired of the "they're going to be fine" line from people, even family. Those who "love" us don't understand how it feels and don't want to. It's painful. Only another mom, YOU, know exactly how I feel. I'm crying right now, and I can't stop.
Posted by: Marianella | July 18, 2009 at 11:42 PM
this is so moving...it makes me cry. I have 2 with Autism. A boy and girl. Both with different issues and "quirks" .....the same people who think it is "just a bump in the road" will not baby sit my kids because they are afraid of them. I know they usually mean no harm...But I feel the same way at their indifference....Like I want to explode sometimes....
people say my son has "recovered" ....just because he can now speek like a 5 year old...(he is 8) ....just because he is a math whiz....just because he is a A student and grade levels above his class....people say he is "Recovered"
.....but he still cannot bathe himself. He still has Huge concept issues and anger issues...he still cannot be left alone for any amount of time....he will still run and strip in public...he will still be naked and starving all day if I did not prompt him to his schedule...the issues go on and on and on....including self injuring and pica....."Recovered my A**!" is what I say!
But I do have to say in spite of this:
I am grateful for every new day he does something he did not do before and a new word he uses .....I am blessed for every hug and every kiss.....for every dream he tries to share.....
Thank you for sharing this moving post....*sniff *sniff...still moved:-)
Posted by: Shilo | July 18, 2009 at 10:05 PM
"It's part of the autism. It's psychological. He's constipated because he is withholding poop in an effort to control his world."
Wow.That's as bad or worse than anything a doctor ever told me.
Is that for real ?
I do seem to recall being told something similar by a doctor when I was going through my chronic lung infections.
LJ one thing I always got from my mother was trying to compare me with people with DS or another form of MR.How they are able to work,and get married,or whatever.She knows I have autism,but she never quite got it.I think she thought people with DS acted just like "we" do.
Posted by: Roger Kulp | July 18, 2009 at 09:06 PM
says it all. "Hugs and laughter" WILL NOT help my daughter talk from her vaccine injuries nor help Eve learn abstract thinking.
"It breaks my heart that you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments."
What a bunch of bullshit you posted. Here is your real motivation, not for Julie, Eve, or my daughter. Go off and spout your fake "caring" elsewhere:
some highlights from your website-
I have a few blogs.
I am also on twitter as safemindsquack
Index The stop jenny website
rebuttal to jenny's website
Posted at 4:22pm on Sat, Jun 20 2009
Colebeck Death by lethal vaccine
The letter circulating about the girl that died from vaccination and the rebuttal to her fear mongering.
Posted at 3:05pm on Sat, Jun 20 2009
Herd_immunity What is Herd Immunity
the wiki page on herd immunity
Posted at 2:59pm on Sat, Jun 20 2009
23519029 Vaccine Settlement no Landmark
Article on the settlement in the Polling case concerning vaccines and autism
Posted at 3:01pm on Sat, Jun 20 2009
Posted by: Teresa Conrick | July 18, 2009 at 09:02 PM
I walk around in an almost constant state of emotional turmoil, partly because I feel so unable to meet the needs of everyone in my life -- my kids, my husband, my employer, and more... When I read Julie's articles before this one, I felt like wow she has it all together, she is doing everything that needs to be done, she is doing everything right, and she still has time for advocacy and helping other parents. It is so nice of you, Julie, to show us your inner turmoil, which gives me hope because we all have so many feelings but I guess we keep on trucking regardless.
Posted by: Twyla | July 18, 2009 at 07:45 PM
dear julie, i think about all of those same things to..i wonder when i wont be on some kind of alert...how we live bare bones..so i can town cry..and coordinate programs..and call and write seanators, legislators..presidents.. its not just the autism anymore its a race to stop this from happening to any more babies..its exhausting..its complete crap..and for some reason here we are..my beast is sleeping right now but i know exactly what you mean..candace
Posted by: candace passino | July 18, 2009 at 07:09 PM
Thanks, Twyla - Thelma is putting on and she is not doing the people of her region any favors!
Did any of you read The fourth installment for the 14 studies yet?
It is really good!
Posted by: Benedetta Stilwell | July 18, 2009 at 04:59 PM
Julie's article is a wake up call : We must get the truth about autism out to the unknowing, and that includes, of course, the medical community.
And this article brings to mind: On tv, a 9 or 10 year old adopted girl- She goes off to summer camp - After some days the parents receive a phone call- Come and take your daughter. A previously normal girl is now severely schizophrenic. Devastated parents, say something I found slightly unexpected: " Its the most terrible thing; Watching your child suffer" They think it is something genetic in their adopted child. I think today- Dont kids probably have to get vaccines before they go off to summer camp?????? Flu vaccine- mercury; meningococcal- mercury ; Hep B- mercury . Given perhaps in adult doses to a child who happens to be quite tiny
"TO WATCH YOUR CHILD SUFFER" -the hard fate of parents of the autistic.
Posted by: Cherry Sperlin Misra | July 18, 2009 at 04:48 PM
I'm so glad that you wrote this piece.
Autism has made me feel so incredibly isolated. While I'm grateful for the gains my little girl has made over the past four years, it still shocks me how overwhelming and painful "autism" continues to be. It's never-ending.
While my daughter is not yet "recovered", even if she was - you said it - we will never get who she "should have been" back. She will never get all those years of a "normal" childhood back. Our family will not get back all the jobs, friends, events (weddings/funerals/birthdays/etc. we "skipped" because it was too hard to interact normally and it didn't make sense to go and just chase our little girl around the whole time and not actually get to "visit" with anyone) and MONEY that have been stolen from us by autism.
Autism is devastating. The only thing worse is the hell that we all have to go through WHILE we also deal with autism - the comments, the stares, the people who say it's just "genetic", the people profiting from this generation of damaged children and on and on. Autism on it's own - in a perfect world - is ENOUGH! But, having to battle society (and often friends and family) is TOO MUCH! Having to watch more and more children continue to be diagnosed with autism, adhd, allergies and all of the "other" disorders that we "know" are all linked to those nasty vaccines is TOO MUCH!
Thank you for writing this. You did awesome!
Posted by: isjois | July 18, 2009 at 04:40 PM
I was so moved by this. Thank you for sharing your thoughts and putting it to words so perfectly. It's just what you say. I said I'd cry later too. Two and a half years later, I still haven't because the house is still burning.
Posted by: Gatogorra | July 18, 2009 at 04:16 PM
Thelma, is that really how you talk, or are you donning a charicature because you think it's cute?
Actually, Julie did not say that autism is worse than cancer. She said that, "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..." This means that the parents are lucky to have resouces such as medical treatment and insurance coverage, not that cancer is better than autism.
This definitely is not a "pity party". And it would not be better for Eve if Julie just kept all her emotions bottled up or denied and focussed only on "lightness and sweetness". It is not hurtful to Julie's child for Julie to express the pain that mostly arises from her empathy for all that her child has been through.
Posted by: Twyla | July 18, 2009 at 03:24 PM
A "rough patch" Thelma???? Really? Is that like calling autism a "bump in the road"? Autism is not a "rough patch" in our life.
You either do not have a child with ASD, or your child is high functioning and you cannot relate to what some other parents go through. Come over to my house and tell my dear friend who has a 13 year old who cannot talk, use the toilet, or feed himself that his autism is just a "rough patch" in their life. Come over here, and help her clean shit off of the ceiling and walls as you explain how rough patches are a part of life.
When Eve is old enough to comprehend any of this, I think she will see how enormously committed her parents were to getting her healthy. Period. WITHOUT the help of mainstream doctors, insurance, or many friends and family members. Don't patronize Julie with your "hugs."
Posted by: Thanks Julie | July 18, 2009 at 03:14 PM
Thank you so much!
You are truly an Angel in my life.
Posted by: Dorothy | July 18, 2009 at 02:26 PM
What an incredible piece. I wish I had been able to read this in the months after my son was diagnosed so I could have known it was normal for friends and family to do nothing, say nothing, BE nothing of a comfort or support during that awful time. Not one of my brothers or SILs said a single damn word to me about my child's diagnosis for months after my mother told them.
I too find it painful to be proud of and jealous of my NT neices at nephews in the same breath. I look for strength while wondering how I am going to pay for a myriad of supplements and therapies and treatments and prescriptions while listening to my SIL bitch about not having enough cash to put my 5 year old neice in a pretigious dance class. Get a clue.
So thank you for writing what I cannot.
To Angela "lovethosekids", shame on you for even asking whether or not Julie "values her daughter." We all deal with this shit called autism in our own way. Get off of your big high horse in your pretend world of "Autism is a blessing! And beautiful! And a gift!" and let others express themselves how they feel best.
I tossed my baby book away as well (somehow "Baby's First Word" never got filled out), so I can relate to this. And yes, I love and value him as much as you love and value your children. In case you feel the need to ask me too.
Posted by: Thanks Julie | July 18, 2009 at 01:33 PM
You said, "I understand the anger and grief we, as parents, go through when we discover that our child is never going to be that person we expected."
Julie is not just saying that her daughter is not going to be like she expected, but that her daughter is not who she would have been without the vaccine injury. Julie will never know who Eve would have, could have been without our f-d up out-of-control vaccine program. There is a difference.
Lovethosekids, you are looking at Julie's post in a biased way. How can you say, "you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments"? That is not what comes through at all. Clealy Julie loves and enjoys her child and is proud of what she can do. But baby books are meant for the "neuotypical" with spaces to show when typical milestones were met, etc. There is an incongruity between our babies'/toddlers' lives and that depicted in the typical baby book.
You say, "But it is important too, in my humble opinion, to not stay immersed in anger and bitterness." Duh. Julie says that too. She is writing about grappling with lots of emotions. Sometimes we have to express it all in order to then move on and live our lives to the fullest.
As far as cancer, of course it would be unbearable to watch your child go through cancer treatment, and worse yet to watch your child die of cancer - absolutely unbearable. But I think what Julie is pointing out is that if your child is diagnosed with a medical condition such as cancer, there are existing protocals and specialists, whole sections of hospitals, support systems in place. Whereas for the medical issues affecting kids with autism there is so little support from mainstream medicine, so little knowledge of effective treatments, and not even much research on treatments for the kinds of issues Eve faces. In many circles there is not even curiosity to try to better understand these issues; parents are told things like, "Oh, it's part of the autism. It's genetic. Nothing you can do." or "It's part of the autism. It's psychological. He's constipated because he is withholding poop in an effort to control his world."
In conclusion, your comment is very judgemental and you don't fully understand Julie's article.
Posted by: Twyla | July 18, 2009 at 01:14 PM
A few responses to the overwhelming outpouring here...
First, I feel obligated to report that the day after I wrote this Eve got asked to go swimming with her friends and has spent the last 2 days with them. My heart soars.
Second, particularly to Lovethosekids, there is absolutely no doubt that what I wrote is the honest portrayal of my bitterness and angerness. As I clearly stated, it is the deepest pain I have and how it feels at my worst moments, particularly when people just truly don't know its depth or why it is that way. But keep in mind, that is only one side of me, and as I made it clear, a side that I keep smashed down deep inside, constantly wrestling with the bipolar sense of having those feelings and tremendous love, gratefulness, and appreciation all at the same time.
In no way do I take anything that my child does for granted nor do I live constantly in that dark place. In fact, I don't think I've allowed myself to feel that pain for far too long and that's the point.
I love my child more than anything I could ever express in words, and I think my actions have been more than a testament to that. To imply that just because I expressed the worst part of what Autism has done to me psychologically somehow means there is no joy or happiness in my life or appreciation for my daughter how she is now is simply, mean.
This is the kind of stuff I can't stand, frankly. I don't care if YOU think Autism isn't worse than cancer or getting hit by a Mac truck. For ME, it was. And I'm allowed to feel that way, and it doesn't make me a bad mom, or an ungrateful mom, or anything else. It makes me human.
As always, I will pick up the pieces, dry my tears for what I have lost, continue to be grateful for what I still have, and I will look forward to the future with faith, hope and love for what will come.
Thanks everyone, again. I'm overwhelmed.
Posted by: Julie Obradovic | July 18, 2009 at 01:11 PM
My heart is bared perfectly in your words. Thank you. MUCH love and gratitude for all you do, kelly
Posted by: kelly milazzo | July 18, 2009 at 12:28 PM
My heart goes out to you and your child. I understand the anger and grief we, as parents, go through when we discover that our child is never going to be that person we expected. That we are never going to have the exact relationship with that child that we had dreamed of.
It breaks my heart that you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments. I sincerely hope that your post was one sided due to anger and bitterness and that you do value your child-that you watch for those magic moments and love your child for all she is.
For her sake I hope that this post of yours deliberately ignored all the plusses and focused on the negatives. I understand needing to vent, feeling scared, dissapointed, angry, bitter and resentful.
It helps sometimes to know that other parents have also felt this way at times. But it is important too, in my humble opinion, to not stay immersed in anger and bitterness.
I have to disagree completely with your implying that autism is worse than a child with cancer, or the same as being hit by a mac truck. Again, I just hope that was anger and bitterness talking.
Hugs and laughter for you
Posted by: Lovethosekids | July 18, 2009 at 10:49 AM
Julie - I am a 56 year old woman with a healthy 33 year old, and I read your words. My heart aches, and I want you to know you have every right to your thoughts, feelings and words. Don't stop, girl.
I am a weak person. YOU, my dear, are the strongest of the strong.
Posted by: Bonnie Schutte | July 18, 2009 at 10:32 AM
My thoughts and secret feelings are right there perfectly spelled out in your words. Thank you. God bless you and Evie, and all our families.
Posted by: Mary K | July 18, 2009 at 09:53 AM
Thank you for allowing us to share in your painful journey and for finding words that sum up the experience for basically ALL of us!
We will always be different. Different and strong and loving and hopeful--and pissed!
I met a mom of little boy with down syndrome yesterday at the park with my Noah (classic autism, almost 3 now) and our baby, Liam.
I was so jealous of her. Her boy was so cute and precocious and you clearly knew he had Down Syndrome because of his appearance.
Noah was clothed in his weighted vest, stimmed off wood chips, darted up the slides kids were trying to slide down, and ran away from me at full speed, repeatedly. When I caught him he beat me in the face, open hand smacks and the sides of his fists, pulled my hair, and jabbed me with my sunglasses. I couldn't really block effectively because he is so strong he would wriggle out of my grasp and run again and I had the baby toddling around--couldn't lose sight of him.
During these times, these easy fun summer park days that parents cherish, I am usually chasing after Noah the entire time and shouting at our first born (4 year old daughter, Mads) to watch the baby. I bet she loves going to the park and babysitting a 16 month old while mommy runs after Noah like a screaming lunatic.
The little boy with Down Syndrome seemed like a dream to me on this particular day when my daughter, the babysitter, was attempting to live a normal life for three hours at summer camp.
This little boy was so docile, sweet, and compliant. So clearly suffering from a genetic anomaly as opposed to an elusive behavior disorder that at times, is still associated with poor parenting.
The mom was so calm and collected as only a mom with a clear cut mainstream medical diagnosis could be. Her very countenance was telepathically communicating to my fragile autism mom ego—“It wasn’t me! I didn’t do this to him…it’s in the GENES! I am ABSOLVED! What’s your excuse?”
You see, I know people KNOW there is something wrong with her boy. He looks different and expectations for him will be lowered. They look at my big boy Noah with a curled upper lip and say, "I think a harness would really help you with that one dear, you’ve really got your hands full."
Gee, THANKS! I'm so glad you gave me that helpful tidbit--any wisdom regarding the science fiction-quality-projectile-florescent-yellow-sand-shit that shoots out of his ass every six hours or so? Didn’t think so Mr. and Mrs. PERFECTLY NORMAL.
This poor mom with the Down Syndrome boy. She was just going to the park, trying to chat it up with another special needs kid-mom; soldiers in arms, comrades. Little did she know she was dealing with a warped, jealous, totally irrational autism mom with major guilt issues.
I guess until we’re really heard and our kids are recognized this psychic pain is just going to be a part of our lives. I pray for the power to stop judging and being jealous every day. I know with faith, tenacity and guidance, I will be delivered. Like you miss the Eve you never knew, I miss the LJ that just took people for who they were without judgment and accepted life as it was. Now I fight constantly internally and otherwise. I used to just be. Now, I just fight.
Best, LJ Goes
Posted by: LJ Goes | July 18, 2009 at 09:52 AM
Best description of what it is like to be a parent to a child with autism, that I have ever read. Also, I'd like to point out that this description is of those of us with 'high functioning' children who are working to 'recover' our children. I would love to see someone describe what it is like to have a low functioning child, because really...sometimes it seems like that very term is just used to divide the kids that 'look neurotypical' from those that don't.
Thank you for this eloquent protrayal of our lives.
Posted by: LivingWithPDD-NOS | July 18, 2009 at 09:18 AM
Mind-blowingly (is that a word?) accurate.
Kudos for saying it like it is and thanks, in advance, for allowing me share this far and wide. Maybe then I won't have to say it anymore, cause people will don't, as you say, want to hear it.
Posted by: Diane | July 18, 2009 at 08:25 AM
Hi, I have 7 yr. old identical twin girls. They are non-verbal, some single words and simple sign language, not toilet trained. Main diagnosis is developmental disability within the autism spectrum. Their pediatrician had recommended they not get the 2nd chicken pox vaccination as for SOME kids it may make things worse. Now I have to show proof at school why they don't have it. I have been feeling very angry about many things and felt as if I needed medication, that I'm not dealing with my twins's disability appropiately. But after reading this article, thru my tears, I know it is normal to feel this way and it is others, like my mother and sisters, who have no idea what they are talking about. I find myself wanting to avoid family get togethers as I notice ny neices and nephews really don't want anything to do with my kids. Older relatives don't like it that my twins try to sit on their laps. I feel like I want to move to another state to get away from everyone. Thank you for letting me know I'm NOT as crazy as I thought, and I will share this article with my family as well.
Posted by: Janet Takats | July 18, 2009 at 08:22 AM
I thought the same thing Julie: my son was sacrificed to the almighty herd immunity and nobody ever says thank you. They just tell me that it did not happen or that I shouldn't talk about it.
I have to disagree on the cancer kids though. I think that the only worse thing that could happen in regard to children is for someone to have to watch their child physically die before their eyes and not be able to do a thing about it. We lost great bits of our children, and it is horrible, yet we still have them on earth with us.
Posted by: AnaB | July 18, 2009 at 07:49 AM
Thank you, Julie.
Posted by: GrammaKnows | July 18, 2009 at 06:41 AM
Damn!!!! If you ever need a place to hang out, there is a spot with your name on it in San Diego, with the PITAs. I never thought I would see our stories, curse words and all so well written.
When people think all I think about is Autism, I will know to refer them back to this article1!
Posted by: Shannon Primer | July 18, 2009 at 04:23 AM
I think that was the best post that I have ever read on here. It reminded me of the time that my daughter felt bad for being a bit angry that her sisters had "normal" kids. She had quite a hard time just watching them play. She wanted so much to be happy in all of their developments, but, she still silently grieved for the loss of her son. I can only imagine the pain that she felt.
Thank you for bringing this out in the open. Thank you for letting someone like my daughter know that it is ok to be a bit jealous of even family members.
As much as we all try to understand, we are not the ones who have to live with this on a day to day basis.
God Bless You
Posted by: Isaac's Grandma | July 18, 2009 at 02:06 AM
Wow. Beautifully, eloquently written -- moving, articulate, so very expressive. Thank you for writing this. And what a response you have received!
Posted by: Twyla | July 18, 2009 at 02:01 AM
Seriously, thank you...that's it, just thank you!
Posted by: Jeanna | July 18, 2009 at 01:03 AM
Thank you Julie, this will go down as the best, the "what it's like" mantra for all of us for many years. I made the mistake of reading it at work, probably scaring a few people who started to come into my office (they did an about face when they saw the tears streaming down my face and the tissue in my hand). No one has ever said it better, thank you.
Posted by: mlinn | July 17, 2009 at 11:34 PM
Julie, you channeled thousands of parents with this writing. Every word familiar every feeling felt, by all of us. Our son is 16 and I am just now learning not to open myself up to family ridicule. Most people don't get it. Most people don't want to. During our last family visit my MIL asked me if I didn't think our son would happier among his own kind. My mind split into a million pieces trying to process that, and not physically injure her. In that same visit during a very short discussion that included Special Ed. info, I saw my SIL roll her eyes at her husband.
I want to send everyone your piece. The story is the same, only the names and places have been changed.
Thanks for showing us all how to be brave. We all need to shout our stories.
Posted by: K Fuller Yuba City | July 17, 2009 at 11:28 PM
You've quite eloquently articulated the inner-most feelings from deep in the hearts and minds of many an Autism Warrior Mom!!
Forget the Oscar -- You deserve a Pulitzer!!
"Thanks" seems to be such a little thing in response...
Posted by: Candy Gill-Knickerbocker | July 17, 2009 at 11:24 PM
We are so fortunate to have speak out on our behalf. I love your ability to write and relate so much. I am sorry we had to go down this path, but am grateful for those who I've been fortuante enough to travel it with, like you!
Much love to you my friend,
Posted by: Lin | July 17, 2009 at 10:43 PM
Where are the fucking tissues? They are supposed to be right here by the computer. Do I have to glue them to the desk? I was warned, and yet, I read this article anyway, knowing it would rip my fucking heart out and I would have a crying hangover for the rest of the night. Julie, please consider sending this piece to every Congressperson and Senator's office and to Nancy Pelosi on Monday. OMG, Julie, thank you, this post is a keeper.
Posted by: Heidi R | July 17, 2009 at 10:29 PM
You broke my heart all over again because this is what I have been feeling ever since I wrote about Andrew in my journal in 1989 "I think Andrew is being poisoned."
You brought back to the forefront the feelings of rage I have for the deniers of the horror of Autism and the deniers of what vaccines can do.
Thank you for sharing your words and deep feelings. I knew I wasn't alone feeling like this but your words tonight really let me know I am not alone in fighting the monster inside and what Autism does to a child and a family
Posted by: Jan | July 17, 2009 at 09:00 PM
It took me less than a year to stop talking about what was happening to us to our friends and family. It became clear that all they could hear was the sound that Charlie Brown's teacher makes when she talks.
Pearls before swine and all, to be blunt.
I remember when my oldest started preschool. I had one conversation on parent night where I said the word "autism" and mentioned how all consuming it was. She looked at me like I had two heads.
After that, I just was quiet or asked about everyone elses life. Unless someone specifically asked. But I wouldn't really tell them anything other than polite nothings unless they really pushed for info so I could be sure they really had an interest.
But listening to all their little problems, I came to realize that even the people I really cared about, I didn't really want to relate to them any more. Because it would have mean wading back into the shallow end of the pool. Going back to sleep.
It is hard out here, but going back into the matrix would be worse.
Julie has said everything that we have worked so hard not to say. Thank you Julie.
Now that you have said it (and we have all facebooked and bookmarked it) we should turn again to working to offer grace to those who don't get it... and will never get it. Because honestly we would be them had we not had sick children.
Do we really want to be them? Getting hung up on the silly things in life? Ironically looking with pity on people who have born more than they have ever shouldered?
Do they pity Navy Seals for their hardship as well?
Would you rather be the one who was hit by the truck, or be the one who looked at the family that was hit by a truck and called it a "bump in the road"?
Garbo, Do you really want to be at those dinner parties any more?
You are invited to a dinner party at our place any time. Hope you don't mind the mess.
... all that said, I want my Chandler to get all better. He is so wonderful and he deserves it so much.
Posted by: Ginger Taylor | July 17, 2009 at 08:57 PM
Julie, yes to all of it. A million times yes. Thanks for putting it in writing so beautifully. Autism took away so much - my thirties, the pleasure in my marriage, the possibility of having another child, our savings, and that's just to begin with - and my child is close to okay now, so I'm the lucky one. What of my friends whose children still do not talk?
One of my friends had a son diagnosed with autism and then a daughter had a minor surgery with complications six months later. She was floored at the lack of sympathy and support she got for the first, while the whole damned town sent cards and flowers and food and help for the second. What the hell is wrong with people?
Posted by: Artemisia | July 17, 2009 at 08:49 PM
After being attacked last week in my car by my child I can appreciate this piece. Having to pull over and pleaded with my kid to get his teeth out of my arm and having to leave the car and lock him in until he calmed down enough for me to strap him in and drive home bleeding.
Must have been a bump I ran over!
Posted by: Geoff Dubrowsky | July 17, 2009 at 08:40 PM
Thank you for putting all in words. My husband and I feel so many of the same things. Our precious only child, poisoned for what?? The Herd?? Since when are we cows?
Posted by: Laura | July 17, 2009 at 08:39 PM
This is one of the best, most honest, cathartic pieces of writing on autism I've ever read. NO ONE will ever understand but we parents. Pretty soon, things may change only because at this rate, 1 in 10 kids will let their parents experience this "bump" in the road.
Posted by: Denny | July 17, 2009 at 08:37 PM
Best writing ever is right here at AoA. My sentiments, exactly. As a matter of fact, I'm pretty sure a lot of what you wrote has come out of my mouth in much the same way. Unless you know what we know and have experienced some of what we have been through,someone living down the street can't possibly understand the amount of blood, sweat, and tears that goes on behind the scenes.
Posted by: Nicole | July 17, 2009 at 08:06 PM
Beautiful, poignant, truthful and extremely eloquent. Thanks for writing this wonderful piece for all of us to share. Especially the passages relating to the grief and the anger. Those are some of the hardest things for many parents and they never seem to ease no matter the progress gained. Autism is the perpetual what if? question in my mind. What would my son have enjoyed, would he and his sister have gotten along, would he have been athletic..and on and on. It's as if they have been stolen and no ransom demand ever followed.
Thanks for the good cry! Sometimes we just need that.
Posted by: Amy | July 17, 2009 at 07:55 PM
Amen and thank you for this beautiful, raw piece of writing. You sound a lot like me. Over the last year it has slowly dawned on us that our "friends" seem to see each other quite often at dinner parties to which we are no longer invited. It's unclear to me whether it's because our careers have fallen off a cliff as we've dealt with our two sick kids (so we aren't as important as we once seemed to be), or having to ask about our kids (and listen to the answer) makes them uncomfortable. I guess I made the mistake of telling one too many truths to people who didn't want to hear them. We have become the people we used to mock (on the inside, never spoken) -- who have a whif of desperation about us; hanging on to who we used to be by our fingernails; outside, looking in on the lives we were supposed to be living by now. Paranoid freaks and conspiracy loons, mistrustful of every doctor and educator we come in contact with. But hey, we've grown spiritually, right?
As we often quote from the movie Jagged Edge: "F--k em. They was trash."
Posted by: Garbo | July 17, 2009 at 07:24 PM
This is the life we live every day. Our daughter is "high functioning" and those who see only a snapshot of our daily life have no clue whatsoever. Just this morning, after dropping her off at camp, my husband and I were talking about what autism has done to her and to to our family. I was remembering how we had to stop taking her to religious education. There was an incident where she was removed from the classroom, and the religious ed. director said something to her about how she "chose" to misbehave. Remembering that, I turned to my husband and said, "She didn't FUCKING CHOOSE to have autism. WE didn't choose this." In a split second I went from calmly discussing the incident to screaming and crying and nearly going off the road. They don't see that she is profoundly ill. Can I really blame them? The volunteer who worked with her at church was a paraprofessional at the first public school we removed our daughter from, where autism is treated as a behavioral disorder. That's where she got her training on autism. Last year, we removed our daughter from a second deplorable public school and I now homeschool, because the teachers just don't get it. Neither do the vast majority of the doctors we've seen. If even the professionals don't get it, how can we expect family and friends to understand?
Posted by: PhillyLisa | July 17, 2009 at 06:17 PM
Julie, you hit the nail right on the head. My wife and I too never really talk about our sons "label" to anyone. I recently went through some anger about my friends son who has arthritis, i thought to myself wow that sucks for this poor kid. But after hearing how awful life could be or how he and his wife were struggling, it took everything i had not to say "Give me a fucking break" "You have no idea what pain is" but then i realized no one knows what i am going through. I too am very jealous of those who have "typical kids" very jealous.
Posted by: PMR | July 17, 2009 at 04:54 PM