Hate the Autism, Not the Kid, Please.
By L.J. Goes
“Do they hurt?” A frustrated mom of four snaps at her tween boy. He looks thoughtfully down at the shoes on his feet and takes a bit too long to respond. “Do they hurt?” She hisses as she grabs his bicep and squeezes. He’s taller than her but very thin. He doesn’t respond so she shoves him a little when she releases her grip. “Sorta.” He replies with a half smile. His face is so much younger looking than his gangly frame portrays. Red cheeks, red ears, pale face. He's itching his arms.
He flaps a little.
“Good!” The mom says, as she yanks a shoe off his foot throwing him off balance. “Maybe, if they hurt, you will learn to stop walking on your toes and walk normal! It’s sad that this is what it takes don’t you think?” She answers herself, “Yep. Very sad, Tim.” She throws both shoes in her shopping cart and rolls her eyes at him. He’s looking at her with that same faint smile but he doesn’t say anything. Quickly as if something in his brain told him it was the right thing to do, he drops his head down and focuses on the task of getting his old shoes back on his feet. He stares at his awkward fingers, willing them to act. I can almost hear the misfiring neurons, so few actually reaching their intended destination. “Okay…you can do this. Pull the strap, pull the strap, something happens when I pull the strap, come on…” He’s moving at a snail’s pace. God, I want to help him with that Velcro before she opens her mouth again. I’m genuinely afraid I might deck her. This is my Target, my happy place. It would be very bad if that happened.
Given my own current situation, three small kids, one with autism (the hyper-run-into-traffic-high-pitch-scream-and-disrobe-in-public kind) I tend to have empathy in abundance for parents in discipline mode. Not in this case. Tim is still laboring away at the shoes when the other three kids start acting up. This is his fault, too. “Would you come on? We don't have all day.” She yells as she takes off with the younger kids leaving him to catch up on his own. “Gawd, this is ridiculous, Tim, you push me, you really push me.” She mutters under her breath. He runs after her yelling too loud, “Mommy! Wait!” his shoes still not properly fastened, arms flailing, smile beaming.
Later that same afternoon I take my daughter to the dentist. I’m sitting in the waiting room when a handsome dad with salt and pepper hair walks in with his two sons. He’s got money. His great watch and supple Cole Haan butterscotch driving moccasins tell me so. I remember the days. I drove my husband’s Jag to this appointment, I remind myself, as if things are not that bad. Who cares, though? Honestly, I don't. Stuff holds a different place in my life now and any part of my thought life devoted to it seems like precious time wasted. What I miss is the silliness associated with luxury. Reading for pleasure. Shopping trips with friends, long lingering wine lunches discussing newspaper headlines, people we know, travel plans. The mindless passage of time. Frivolity. Meaningless fun. It all seems terribly self-indulgent, when there is so much work to be done. Besides, our travel plans always involve Houston or New York, the only two places on this entire planet where my son can get proper treatment for his complex bowel disease and metabolic issues. The conditions we wacky autism moms "make up" according to the media and pharmaceutical lawyers. Too many kids are getting sick and dying for me to care about the next trunk show at Nordstrom's. Maybe I’ll care again, I think almost outloud, as I look down at my Merona jeans and Cherokee flip flops from Target. Doubt it.
Handsome Rich Dad’s older son invades my personal space pulling me out of my introspection. “Calvin, sit down.” The dad says, in a tone eerily reminiscent of Target Mom. He is much more sophisticated than her, but his demeanor says it all. Calvin. Better. Sit. But he doesn’t. Calvin paces with his Nintendo DS and seems to be growing increasingly agitated. Dad admonishes, “you are going to have to sit on the floor or sit in a chair but you are not going to sit by me.” The younger son took the only available chair next to his dad and the two are cozily settling in to read a book. Calvin side glances at his dad and younger brother. I know with all that I am I saw a flash of anguish on that boy’s face. He runs across the room and slams his body onto the floor between a coat rack and a Legoland play table. Calvin is about 12. I'm guessing he doesn't speak much. He alternates his attention between the legos and his DS. He groans. Dad ignores him while he reads a paragraph to his younger son. “Now it’s a strange word choice here,” he explains in an entirely different and almost whimsical voice, “exposition…what do you think it means in this context?” He sounds so patient and loving. The younger son is attentive and smart, a good student. Dad rubs the younger son’s shoulder while he tries to figure out the meaning.
“Calvin!” The hygienist yells as she opens the door. “Any changes in his teeth dad?” she asks. “No,” he responds flatly. “He’s just the same as before.” Calvin takes the time to put every single Lego back in place. It takes awhile. Impatient silence fills the tiny waiting room. “Hi Calvin,” the hygienist sort of whispers, almost to herself, it seems. Not at all the toothy, enthusiastic welcome imparted on my daughter just moments before. “You can't have that DS in there, give it to me.” Dad reaches out his open hand and waggles it in the air. Calvin is nowhere near him yet so this motion is premature. Always such a disappointment, that Calvin. It occurs to me that dad bears a striking resemblance to Patrick Bergin in the movie, Sleeping with the Enemy. He grabs the DS from his son who lumbers dutifully behind the hygienist. I decide a letter is in order.
Dear Target Mom and Handsome Rich Dad,
You don’t know me. I had a chance to witness your conduct with your kids today and I would like to take a moment to talk to you about it. First, Target Mom, Tim is a spectrum kid. You may or may not know this. Your treatment of him lead me to believe you were unaware. Please do not take his behavior personally. Tim’s odd behavior has absolutely nothing to do with you. He is doing the best he can. Might I say, in the three minutes I had to observe your family, he is doing remarkably well and maintaining an incredibly positive attitude. Tim does not wake up every morning thinking, “How can I really piss off mom today?” Quite the contrary, Tim wakes up every morning and thinks, “How can I do better? I know I can it’s just that I am so different. Why is everything so much harder for me than everyone else? Why is mom so angry all the time?” Tim is medically ill. I know, your doctor didn’t tell you. He never will. Mine didn’t either. There are about 100 reasons for this but I can’t go into that now. You have to get him help. I will include some resources at the end of this letter that will help you get started. Right now I need you to go to your son. Here is what you are going to tell him. “Son, I am very sorry. Sometimes mom has a hard time understanding why you do what you do. I have been very hard on you. Sure, I knew something was wrong. But no one would confirm it for me. I knew. In my heart of hearts, I knew (because I know you do, mom). But today is a new day. I am going to work on controlling my anger because I am the adult. From now on we are going to work on getting you better.” Please give him a big hug and tell him you love him. He desperately needs to hear it. All good? I truly hope so. Because if I ever see you treat Tim like that again I swear to God I will lay you out flat. I’m Irish and from Detroit. I promise you, you do not want a piece of this.
You’re next Handsome Rich Dad. I betcha Calvin is a real handful. He can be defiant, difficult and downright violent at times? Gotta tell you, I am legitimately concerned I am going to be reading about Calvin in the news in the not so distant future. “Local teen takes own life. Parents say he had ADHD, struggled with language, had a hard time making friends.” “He was a loner.” Neighbors say. Calvin is sick, too. Kids who are healthy don’t act like Calvin. I get the idea your dreams for Calvin have died. But younger son…younger son is where it’s at. That would be fine if Calvin was dead. You treating him as if he is, does not make it so. Please wake up and realize you have another son who needs you. Here is what you are going to tell him. “Son, I don’t know what I have to do to make things right but I am willing to try. Maybe you are sick, do you feel sick? I don’t think I’ve asked you that before. I often assume you don’t understand what I am saying. From now on I will presume intellect. I will presume you are a thinking rational being with likes, dislikes, wants and desires. Let’s both figure out how you are feeling and what happens in your body when you are acting out. It’s okay if it takes you a long time to find the words to express it. I will be patient. I am going to try very hard to be patient from now on. I love you, son. I want you to have your own dreams and I want to help you find a way to achieve them. I am very sorry for how I have acted toward you.” Calvin's dream might be collecting every silly band ever made. He is Calvin, not Handsome Rich Dad. I know he doesn’t fit your image of what your life should be. You are practically wearing a sandwich board advertising this painful fact. And Calvin knows it. It’s really important that you understand Calvin’s deficits are not your deficits. Your plans, your life, everything…has changed. You must adjust. I am not saying it is easy. I am saying it is necessary.
In closing, I need both of you to listen closely. Put your big girl panties on and man up. Quit feeling sorry for yourselves. WE NEED YOU. When you take the time to figure out why your kids are hurting and what has to be done to get them better you're both going to get frightfully mad again. Not like poor-me-my-life-is-so-hard mad. Like, Vietnam-vet-with-agent-orange mad. Righteous anger. This is good. Anger can be productive when it is appropriately directed. Take the focus off your boys' weaknesses and focus on their healing and their strengths. Research. Research. Research.
Go to USAAutism.org and you'll discover a variety of resources that are readily available to you. Join AIM, Autism Is Medical to find out what kind of medical help is available for your kids. You will find copious amounts of scientific studies that will help you understand what is happening in your children's bodies. Join the Canary Party and get involved. You’ll find everything you need to know and meet thousands of parents seeking the truth and healing for their children. You are not alone. Make a commitment to end the suffering in your own family and prevent it from happening to others. At the very least, from this day forward, hate the autism, not the child.
Best, LJ Goes
LJ Goes is Managing Partner of The Misuta Project, LLC., Contributing Editor to Age of Autism, and Executive Board Member of the Illinois Canary Party.
dave michaels
Get down on your knees and thank the good Lord that you really don't have a clue what you are talking about.
Posted by: Benedetta | August 13, 2013 at 11:20 AM
It depends on the case, but many many so called autistic kids are just kids who would have been normal but are spoiled rotten. Note many of the cases are a single mother, without a father to discipline the kids. This leads to kids who have never suffered a consequence, and therefore feel they can act however they like without fear of punishment. Some will have temper tantrums and have found this will get them what they want.
Society is paying the price , as these kids are high maintanence. It is going to get much worse, as they age and become totally dysfunctional as adults, unless they have wealthy partents who can set them up in some sort of artistic fake job, like acting or fingerpainting. The vast majority dont have enough money in the family to sustaine themselves and face miserable adulthoods as poor and shunned individuals.
A couple of genrations ago we didnt have enough money to have autistic kids, and the stress of being poor cured this so called disease. Sad, but . I think it is a total lack of stress in their enviornment , as the parents fret and try to create a painless existence for their baby, that leads to autism.
Posted by: dave michaels | August 13, 2013 at 01:33 AM
p.s. If that picture is of you, I'm sorry.
Posted by: Jennifer | February 19, 2012 at 04:43 PM
Hello,
First, let me introduce myself. My name is Jen and I am a single mother of two severly autistic boys that are in a public school system. I am not rich, nor is my ex husband. These are the only two kids I have. I say I, because Dad is absent 99% of the time. So needless to say, my life can be very stressful. I work part time in a school cafeteria because it is the only job that has the same hours as the boys school. From what I get from thier dad and from disability for the kids, it is not enough to cover the bills. Well, I guess I shouldn't say that. It covers the bills, but we wouldn't be able to eat. I have been down many avenues to find help with thier behaviors that all autistic have, like taking tantrums when doing everyday tasts and not wanting to leave the house and wanting to change clothes every five minutes. (did I mention they are non-verbal) So as you can imagine my days are full.
It really freaks me out when people of a higher income have to treat thier children like that when they are more than capabable of providing extra help for them. I, on the other hand have to look for state help, and yes, I feel like a low life since I have never had to ask for any kind of state aid before this. Even so, I find it difficult to get any services since there seems to be more cut backs year after year. Right now the only help at home I get are two young college students who have never dealt with a disability of this magnitude.
I'm not looking for pitty, but I do know how people feel when they get aggrivated with thier autistic child. There are days I think about suicide, but I could never hurt my kids. Not being there for them would hurt them most. My wish is that every educator, or every person that has to do with special education and every person who has perfect kids that sit back and criticize those who don't, live with a child with autism for at least one month. I think it should be part of the learning curriculum at all colleges that have special ed. courses.
I think it's horrible someone can write a letter and make it sound like they really care, when they have never experienced raising a child with a mental disability. Maybe instead of staring and writing letters sitting behind your keyboard, step up and ask someone if they need a hand at the time something like this happens. You may be surprised how a little compassion can help in a big way.
signed,
Jen A struggling mom trying to stay sane.
Posted by: Jennifer | February 19, 2012 at 04:25 PM
I would say, don't hate the autism either. I can sympathise with parents of severely autistic kids, but i do not think hating the autism will help either them or the child. Firstly, hating anything is a waste of energy, and keeps the parent stuck in the angry, grieving mode. It's hard, yes, but it doesn't have to be a big tragedy thing, not every parent of an autistic child reacts that way.
Secondly, Autism cannot be separated from the child - it's as much a part of them as being (in these instances)male, and (presumably)white and American. It can't be ripped off or out. Being taught to 'hate' their own autism, means sooner or later the child will hate themselves for being autistic. Is that what anyone wants for their kid?
It harms the child in the long run. Consider this - young adults on the spectrum, who have been taught to despise autism so much, they refuse to identify themselves as autistic, and deny themselves what support and services do exist for them, as a result. Or, they do identify with it, but are so ashamed of being autistic, because they know that it's 'them', so once again they stay away from the places and people that could help them. Or, they are older autistic people who have somehow managed to fumble and bumble their way through life, always knowing they are 'different', and feeling 'lesser than' as a result, but never think to identify themselves AS autistic, because autistic people are 'those loonies and retards over there', not themselves, right?
Short version - please, don't hate the autism. It's just as harmful, to both parent and kid, as hating the kid.
Posted by: Kiwigirl | July 31, 2011 at 06:30 AM
To Donna L. - Very well said indeed! While I do agree with both sides as well, I have to add that we shouldn't judge others so quickly. With my ASD son, I find I have to use my stern voice to get him to comply, especially when we are outside. I could say it "nicely" multiple times and he'll ignore me, but when I raise my voice and give him stern instructions, he will listen almost immediately. When we are outside, I have to employ this strategy to make sure he stays with me and doesn't get into situations, so I could very well be looked on as the Target Mom in this article. Sometimes we have to do what we need to do to keep our children safe, and if it involves raising my voice to do so, I will.
Posted by: Wendy | July 26, 2011 at 04:26 PM
There was a point in my son's life that I realized that he couldn't communicate properly and that he couldn't help it. I could a) be frustrated, sad, angry and let those emotions fly all over and take it out on him or b)be frustrated, sad and angry and actually control those emotions and respond to him with empathy that this must suck for him! I've never let go of that and now when things get bad I cry and hug him, tell him I'm sorry that he has to go through this, that we're in it together and everything is going to be okay. My husband took my lead and our family life markedly improved. God Bless.
Posted by: Amber | July 25, 2011 at 11:10 AM
Excellent. Beautiful. Well-written, well-put. A much needed reminder. Thank you.
Posted by: Hattie | July 25, 2011 at 12:27 AM
LJ Goes, This is beautiful and timely. Every time I go to the US I have the pain of watching some of the unfortunate things that happen with a boywho has had very mild symptoms of autism- so mild, that people will not recognise some of them and realise that they require some special handling instead of anger and irritation. The memory of this has been troubling me ever since I returned to India in early July.
The one positive conclusion I could come to is that we must decide to be the supporters of such children whenever we meet them and if they are part of ones family, all members of the extended family should consider it their job to stand behind the child in such a way that he knows he is important to many people and never feels alone.
During this visit to the US I was rather surprised to meet some parents and others who were quite clueless. One rather kind father explained to me that his kid did not have autism- just epilepsy- and their way of dealing with it was with their religion. I met my neice who actually runs some kind of referral center for special needs kids and she felt that it was so sad how the parents were wasting money on useless treatments. Then I talked to a grandmother in LA who is the main caregiver for a severely autistic grandson. She is a member of a group of grandparent of autistic kids. Her group, she said, had many speakers, but she had learned more from me already in our half hour talk. Friends, we have much to do on many fronts.
Posted by: Cherry Sperlin Misra | July 24, 2011 at 02:25 PM
I am the wife of a Vet. And the reason I was led to this site is because my husband has a cousin that is Autistic. And I took the time to educate myself about this because his cousin in the first person I have ever met with this horrible disorder. However, I may not have kids but I tell you this. I spent two straight years fighting non stop for my husband to get VA benefits to help deal with his PTSD. And I got such a drive to not stop that I now help other vets. And for you parents out there that are frustrated and hurt, I understand where you are coming from. However, when you feel like the walls are closing in and things just feel like they can't get any worse. Turn that frustration into drive. Don't stop, give up or surrender. There is a saying that we have in the Veteran world and it is on the ad for the suicide hotline, "It takes the strength of a warrior to ask for help". Well it also takes the strength of you amazing parents to keep fighting. And to continue to speak up and pound your fists and continue to hound the medical community to start realizing that our children are not labrats! I know how it is to feel like the walls are closing in and that everyone is telling you that your loved one is fine and it is all a bunch of crap that you are telling them. Well, remember you have EVERY right and purpose to be there and continue this fight. And you have others as well that are backing you like myself. MY husband may have gone to war. And you have been there for your troops. Now we are here for you. Don't give up. Continue to rise up and ask questions. The children matter. They are the future!
Posted by: Kristen Davis | July 24, 2011 at 02:19 PM
I watched my grandson who is 5 move his cousins' high chair into our family room and put himself in it so he could watch "Despicable Me" with the whole family.
He contained himself and was able to sit through the whole movie without jumping around and being distracted.
Do not ever under estimate what these children understand about themselves.
Posted by: Nora | July 24, 2011 at 01:20 PM
I have autism and I think YOU NEED MASSIVE HELPyour kids and you need to get servives for them . GET A MEDICAID WAIVER. PERSONAL CARE SERVICS , EPSDT, ETC
THIS .sounds like abuse
Posted by: NICOLE | July 24, 2011 at 11:02 AM
As a past school teacher, I found every parent is deeply emotionally involved with their children, but not always have the mental sense of how to deal with their kids, or too much emotion and not enough thinking. That is probably what you are meaning? Than that is very True.
What aggravates me to no end is that there are a lot out there keep thinking autism is a social issue, and that is the only symptom they are looking for. Trouble is they are not even good at recognizing that symptom, let alone any other symptoms. They are clueless.
Of course in the past things like PDD-NOS did not help clarify for these parents, or even tourettes (that is inherited right?????) well no, it is a brain injury like the rest of this mess.
Parents are alwys sayig about the social aspect of it that, my kid is very loving and seems social, just has a weird personality or a personality of "My way or the highway" that is how one parent described it to me.
They say my kid does alright with other kids in the church group (which are usally small).
So it is unrecognized.
Put that kid in a room full of kids, as in public school and watch just how really social it is, how forgotten, quite, and disengaged they really are. There are not many parents that calls the school and says I will be down today to observe. Many would have their eyes opened even if they came for a short time during recess and watched.
Or maybe not.
Posted by: Benedetta | July 24, 2011 at 10:42 AM
Thank you all so much for commenting. This was an incredibly hard piece to write because it is my goal to unite, not alienate. But I have to say, and I am going to reap so major criticism here, meeting the women of AIM, and so many other parents who have been at this for awhile---knowing them has lead me to develop the "two camps" philosophy. There are folks who want to complain about their kids situation (and their own) and those who want to do something about it. I was so vehement about writing this because the lure of the former is so great. Misery loves company. I could have sat around kvetching with loads of other asd moms (God knows there's no shortage of us out there)and believe me...BELIEVE ME...I wanted to. And for awhile I was depressed. We have all been there too of course. But when you find others going down that road it's too easy to link arms and head straight into the comfy cozy fire, while our kids are languishing in the cold. I wrote this to say WAKE UP AMERICA! We CAN do something about it...
Posted by: LJ Goes | July 24, 2011 at 09:27 AM
Oh, oh, oh! I have heard these types of parents. There is no mistaking the contemptous tone they direct at their children, ASD or NT. That's the difference. We've all had less than Halmark Moments with our children. But I have never spoken to them like I was disgusted with them as people. That is the difference. I do all sorts of things wrong, I am far from the perfect parent. But the ONE thing my two boys with ASD (one fairly high functioning and very well behaved, and one non-verbal tough-nut that thinks rules are made to be broken) know beyond a shadow of a doubt is that I worship the ground they walk on. They must have egos the size of Texas. I don't know what makes a parent look upon their children as disappointments, but I understand Lisa's point in this article; some parents blame the kid and not the autism. And that is a tragedy. My heart aches for those kids.
Posted by: Sylvia | July 23, 2011 at 09:43 PM
I have to say, I also agree with both sides here. While LJ is correct - the way these parents spoke to and acted toward their kids does seem to constitute some form of psychological abuse and is morally wrong and very tragic, I also agree with Terri, that we really do not know that these parents haven't tried anything and everything under the sun to help their kids. It's interesting to note the age (around 12?) of both of these boys...this age group seems to really stand out on all the biomed groups I've been on as the most difficult and stubborn to treat/recover (no coincidence that this age group also received much more mercury than the younger kiddos). My son is 12, and if you saw him in Target, you might think or assume that I did not know jack-sh*t about biomed, even though we've been doing it (and most everything else) for the past ten years. And if you approached me and suggested that I try biomed for him, I would probably drop to the floor in a heap of utter despair and defeat.
If autism has taught me anything, it is this: we really cannot ever presume to know the magnitude of anyone else's pain or suffering.
Posted by: Donna L. | July 23, 2011 at 08:42 PM
Bravo! You tell 'em, LJ! That was a hard read, but it was a must-read. My heart hurts for those kids. I can only imagine the similar lack of parental understanding that over the years fostered the bitter writings posted by some ND bloggers.
I hope that if we readers witness similar episodes, we all can find the right pacifying words to support both child and parent, in a manner befitting that teachable moment.
Posted by: nhokkanen | July 23, 2011 at 08:38 PM
This should be in the op-ed section of every paper in the country, so thousands of parents might see themselves and realize they can (and should) try to help their kids if they can. And, thanks for the reminder that my son doesn’t behave the way he does sometimes on purpose just to tick me off (though it seems that way on occasion). If only patience could be bought...now there's something the pharmas should work on!
Posted by: MelissaD | July 23, 2011 at 07:47 PM
Lisa,
I would love to friend you on Facebook. Thank you!
We are on the same team, in the same boat, and on the same planet.
I didn't mean to judge you.
My intent was to draw attention to additional possibilities-- which may or may not be the case for the specific individuals you mentioned.
I begrudge no one the resources they need to deal with autism, and it isn't just money--you need family, or a partner (hopefully both) or some relief from somewhere, and much more.
As Gatogorra says, you need a "peace village," and many people just don't get that. No matter how often we explain it, or try to.
Lots of us autism parents, no need to say who, are dealing not only with a lack of funds, but with families and spouses who either don't get it, or who are actively opposed to some of the most obvious ways we can help our kids--ongoing dietary change, nutritional supplements, etc.
So--that's all.
Terri
p.s. It's nice that your husband can take your side on this. That's not to be taken for granted, and I wish all families could be so lucky.
Posted by: Terri Lewis | July 23, 2011 at 07:42 PM
Wow.
If we could just combine lj goes' perspective, dave goes' perspective, AND Terri Lewis' perspective...
YOU GUYS ARE ALL CORRECT.
I have been in the position of Target Mom, where I have absolutely lost perspective and sensitivity out of pure frustration (at a time when nobody would admit that my child was having problems--sound familiar?).
I have been in the position of Rich Handsome Dad (except I'm not rich, not handsome, and not a Dad), in that I somehow managed to be patient and attentive to Younger Neurotypical Sibling at a time when I had used up all reserves with Older Autistic Sibling.
At the same time, I have brutally judged parents of both autistic and neurotypical kids (in places like Target, the bus stop, the grocery, even the neighborhood).
I totally agree with Terri's perspective, too. Let's face it: most of these Target Mom/Rich Dad parents are barely able to handle neurotypical kids, let along autistic kids.
I started out having swallowed most of the parenting class garbage fed by the pediatricians: babies belong in cribs, formula is fine for babies if mom can't breastfeed, babies should be scheduled, vaccines are good for you, etc.
I shudder to think what kind of mother I would have turned out to be if my first-born hadn't been autistic--which threw me into another dimension entirely. I learned how to be a good mother BECAUSE of the autism.
But that doesn't mean that every mom of every autistic child will be able to do that, especially if those of us who (now) no better aren't out there, offering both information AND support!!!!
We have to remember--NOBODY who hasn't gone through what we have gone through understand.
I bet none of Target Mom's and Rich Dad's friends/family have a clue what they are going through.
Posted by: Taximom | July 23, 2011 at 07:10 PM
Dear LJ
Once again, a powerful piece in what is mostly dared not to be discuss. Thank you for bringing it to light.
Jacey
Posted by: Jacey | July 23, 2011 at 05:26 PM
Terry,
My apologies for my husband. Totally and completely agreed. Sometimes, we make snap judgments on people that are not fair. Perhaps I was quick to judge her. As you are quick to judge me. I have been exceedingly poor. I spent two years living in a one bedroom apartment (with a blow up bed and no furniture) in a dangerous neighborhood in Santa Clara CA where I walked 4 miles to and from my 8.00 an hour retail management job at a mall that caters to the rich. That's where I learned all about excessive wealth and labels. I know shame. I know poor.
This target mom was blinged, by the way.
You know those fancy new jeans with the jeweled up pockets? She had those on.
We too are Christians. The kind that realize one of the greatest issues we face as a community is lack of humility and pervasive denial. I am sorry I've offended you but I saw no mercy or humility in either of these people. I saw judgment and rage AT THEIR SITUATION and their children. The behavior of delinquent teens and petulant children. NOT PARENTS. I stand by my words.
Thank you for all you are doing and have done for our community. I sense you frustration. I am living it. We are always, despite our current income, ONE PAYCHECK away from losing it all. We live paycheck to paycheck, robbing peter to pay St Paul's hospital, a situation that exists because of the severity of my son's medical issues, not because we are frivolous spenders with no respect for money. Because no matter how much we make, it is never ever enough. We are all in this together, we just have to realize it...please friend me at Lisa Joyce Goes on facebook. I would like to be on the same team.
Respectfully, lj goes
Posted by: LJ Goes | July 23, 2011 at 05:16 PM
In case you didn't notice, Dave, I wasn't defending anyone or excusing any behavior.
I was suggesting:
1. This woman might legitimately need help that she isn't getting or doesn't know how to find.
and
2. She might not have been in denial (as was assumed), she might not have been ignoring her child's needs, she might have been awful every day, or her behavior on that day might have been unusual, in which case she (and her family) might possibly seek help rather than continue on with her/their current situation/behavior.
Again: Not defending the behavior. Not defensible.
And I agree--it doesn't matter whether you're rich or poor.
Autism does overwhelm all of us at times.
That was really my point.
It was a plea for help (with or without compassion, and without defending the behavior) for those who need it.
Before they crack up completely, or when they are showing signs already of doing so.
Posted by: Terri Lewis | July 23, 2011 at 05:01 PM
Thank you, Lisa. Yes, the answer as always is to keep getting the word out.
I had some serious insights into certain social dynamics which could probably help the situation to a certain extent. Though our kids have far fewer meltdowns since biomed, if they’re coming down with a cold or have had some exposure, it can still happen, sometimes in public. Mostly when this happens we’ve had to endure stares, glares and worse, a growing sense of unease that one day, someone’s going to call the cops or CPS to report us for not properly sedating our little “defective bad seeds”. But then one day I faced a double public tantrum at the crowded health club pool, but by some strange convergence there were five or six relative strangers present whom I had just randomly chatted with over the past weeks about the long, painstaking, drug-free treatment path we were going on with the kids. These people all kicked in to lend support and it totally changed the crowd dynamic. Suddenly it would have been totally uncool for the usual jerks to stare or glare and wrinkle their nose—so no one did. Other kids started looking to their parents for cues and caught on that, oh, these two kids are in crisis and need help. Instead of giving the fish-faced stares that kids give to “weirdoes” in these situations, the other children present only looked concerned and at the ready to pitch in if needed.
I think one of the upsides of making biomed mainstream would be to take away excuses from the minimal-effort types among autism parents-- or probably more importantly, to make it economically accessible to people who can't afford it. But for all concerned it could forge a different public awareness by which children with autism were viewed as fallen soldiers-- so that it would be all the more shameful to be seen as mistreating them. In recognition of the medical fallout of Agent Orange, Vietnam created Peace Villages whereby whole towns would take responsibility for the welfare and dignity of a certain number of disabled victims of Agent Orange. When I was at the pool that day, I got a little preview of a "peace village".
But one of the reasons the epidemic has to be stopped is that autism doesn't pick and choose only exemplary families when it strikes, and human beings have enough problems not abusing their children. And one of the reasons (among many obvious ones) that I never wish autism on the average folks I see who glare or stare or wrinkle their noses at my kids' occasional public meltdowns or behavior is that if they did have a stricken child, the child would probably be seen through the same alien lens they're viewing my children. Pharma has only made it worse.
Part of the problem is our quick fix society-- both the attitudes and expectations that come with it and the dangerous shortcuts that are at the center of it and are being pushed on families in crisis especially. The fact that 1 in 10 adults in the US are now on psych drugs with black box warnings for suicide and violence probably isn't helping one bit, not with parental patience or with far worse manifestations of bad parenting. The drugs are associated with a 40 fold increase in suicide or violence, probably due to something called drug-induced akathisia, something discussed in Congressional hearings regarding the explosion in suicides among medicated troops in the military.
The scariest thing is that people who were by all accounts decent, kind and patient have suffered overnight personality changes and killed their whole families while medicated. Though at the very least, the meds carry the risk of turning someone who was a shit to start with into a more irritable and unreflective shit or worse. Parental murder of children rose 100% around the time Prozac came on the market, went instantly blockbuster and was followed by mass marketing of knockoffs like Luvox, etc. To date there's still no way to screen who will be among the 8% of drug consumers who experience psychosis or the larger percent who experience negative personality changes.
The autism epidemic ramped up at the same time, but the telltale sign that these were two somewhat (both still pharma related) separate phenomenon was that the steepest hike in child murders between the late 1980's and 90's was parental killings of teenagers-- children less likely to be early autism epidemic collateral. We may have two epidemics on our hands at present, both feeding each other.
It is very unsettling to think about the combination of chemically damaged children left in the hands of chemically damaged adults. As a parent who learned the hard way about the dangers of pharma quick-fixes regarding hypervaccination, the quick-fix mentality is a scourge because we know that a certain percentage of people who glare at our vaccine injured children during those occasional bad public scenes are thinking, "Tsk, there's a drug for that. Why don't they just medicate those brats?" And it adds to the general environment of criticism, fear and hostility.
At least my family is aware that there are no quick fixes, that it's all a dangerous illusion. We're able to put those glares and stares and criticisms into perspective. But for the average unreflective bear, they just feel the burn and take it out on their kids even more than they might otherwise. The children pay for their parents' inability to awaken politically. If hostile onlookers had the least political awareness that A) some children were injured to begin with from this quick-fix construct and B) more quick-fix will only make it worse, they might have more sympathy. It would help both those of us who were already aware by simply making our lives less stressful as well as putting a check on parents who are unaware, by creating social pressure to show more sympathy towards their "fallen soldiers".
Posted by: Gatogorra | July 23, 2011 at 04:54 PM
And what about handsome rich dad, Terri? does he not get off that easy because he's...well...handsome and rich. do you not feel the need to defend him because he may have also shown up in a jag? He has feelings too you know. Target mom was not a nice person, period. just because she sounds like she may have been poor (- and cue the violin - therefore in need of our sympathy) doesn't mean she was. She wasn't. Imagine this story was told the same way, but the woman was shopping at Nieman Marcus with her nanny. do you think you would have the same reaction? Listen, you don't have to be rich to be a prick. there are plenty of poor pricks out there too. the point of this article is to show there are still plenty of people out there that deny their kids' medical conditions. there are plenty of parents who do not know, do not want to know or know but ignore the problem. We need these parents on our team because the more of us there are, the more we can huddle together, beat this man made medical problem and make it so our kids don't have to suffer through their pain anymore. Of course I am biased because I am sleeping with the author, but I think she's right. Man up and put your big girl panties on. And don't think it's easy for us because we've got some dough. we've both been dirt poor before and autism is bringing us back there very quickly! and no matter how much money you have, autism overwhelms us ALL.
Posted by: Dave Goes | July 23, 2011 at 04:17 PM
Please excuse the typos.
For the first time in my life, I posted without proofing.
Literally.
For the first time in my life, I posted without proofing.
We aren't stupid.
Never assume a mom in 2011 doesn't know. She might know, but she might not know where to get the help she needs.
Posted by: Terri Lewis | July 23, 2011 at 02:31 PM
Look, the Target mom needs help, too, and unlike some of us, she may not be getting *any.* OK? She may be at the ABSOLUTE end of her own personal rope.
Maybe her kid is still hopeful becausel *most* days, she still holds it togeter.
She doesn't know what's wrong with her kid?
How condescending.
We--as a community--need to help more of the Target moms before they completely snap.
Who knows?
She might have already tried *everything*--maybe over a period of the last ten years or so--and nothing worked for her son.
Get on your knees and thank God you *aren't her* and then find a way to help families who don't go to the dentist in the Jag.
Sorry.
But I've been. . .I've been Target mom on my worst days.
And so have other people--right here.
I'm getting major, major help now. . .medical, from churches. . .and I *gave* help when I could. I had the answers. I did the diet--for years and years--I did the Greenspan and RDI and the ABA (for a while, when the RDI stopped helping) and the speech therapy and OT and the IEPs and the. . .don't tell me, and don't tell Target mom. . .
Quit assuming.
I'm still not ashamed to put my name out here if it will help just one mom. . .just one. . .admit that she, herself, needs help.
Go to a Vineyard Church.
They are everywhere and they will help anyone--no questions asked.
You do not have to be Christian. You do not have to believe in God.
Just get help--financial. Food. Whatever.
Get past the pride, Lisa, and the anger, and thank God--I mean it--that you knew when and where to get the help and you can fly to wherever and you can get that help. OK?
I used to be here at AOA all the time.
I'm a Rescue Mom, for crying out loud, who's hit hard times, you might say.
Hubby and I are doing our best with three kids--two with special needs (healing, but still), and taking care of my dad who had a stroke. . .
Look--the parents need help.
There are many of us and we aren't all stupid--we are--some of us--overwhelmed as time goes on and nothing we've done has worked enough--for our kid--for our multiple kids--for our kids plus the parents we take care of--and we can't stretch the money any further.
Posted by: Terri Lewis | July 23, 2011 at 02:29 PM
Mom is medically ill too, please don't forget that. First treat the mom, then the child's treatment will be much easier.
Posted by: Elizabeth S | July 23, 2011 at 12:39 PM
I see it so many times. And I just want to say something. And yet people like to say it is over diagnosed. Not always is it even noticed.
Posted by: CFG | July 23, 2011 at 12:38 PM
Saw a mom at the park the other day belittling her two daughters that wanted to help set up for a birthday party. You could tell they so wanted acceptance from their mom - but she was being down right rude to them. We were sitting at the picnic table next to theirs.... me and my 6 year old autistic son.... She had no idea how lucky she was to have such beautiful, healthy daughters! I turned my back to them so they could not see my tears. I will no longer talk to strangers about my son or their kids - too many bad experiences. All I can do is work to make my son happy and healthy on this road less traveled and set a good example to other parents.
Posted by: Son in Recovery | July 23, 2011 at 12:19 PM
So very sad! I know my son is different from most boys but he still has love in his heart and wants to be loved back. It kills me that a parent couldn't understand this and truely see how very special there child is. Our son tries us every day and some days are better than others but no matter what I love him and cherish him. My heart breaks for these two children with their cruel parents. My God be mercyful on them.
Posted by: c roberts | July 23, 2011 at 11:13 AM
Loved, loved, loved every word...thank you for writing about this...
Posted by: emilys mom | July 23, 2011 at 10:54 AM
No offense, but I don't know that we need these parents as much as we just need to HELP ALL THESE KIDS. The parents likely wouldn't listen anyway and can't see the forest for the trees because they've already been duped that it's their kid's fault. And those parents don't seem like they would want to be bothered with hours of Google Med School. I do a lot of Canary watching out in public (have my own PANDAS cub). I truly don't know what it will take to get everyone on board. If any of us knew, we'd have all started yesterday. But passion and awareness and a neverending desire to make it all better for all our kids will go a very long way.
Posted by: Sarah Jane Alleman | July 23, 2011 at 10:18 AM
Love our kids, love our kids' moms who always put our kids first. Always!
Posted by: bensmyson | July 23, 2011 at 09:46 AM
Thank you so much, Lisa!! This meant so much to me. As I read, I could picture every bit of what you said and I cried and laughed. I have seen things like this to but I do not have the words you do to tell about it! You are blessed with a gift.
Posted by: Karmen Wagler | July 23, 2011 at 08:44 AM
LJ Goes for President of the Entire Universe. LOVE this piece, straight to my FB page this goes. Never stop writing LJ - we need you too much.
Posted by: Alison MacNeil | July 23, 2011 at 08:27 AM