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Can I Get an Amen?

FiremenMemorial By Tre Benson

Ever since our son was diagnosed with autism 2 years ago we have worked hard at trying to recover him. Both of us, my wife and I, and that’s about it, just us two. Family and friends are there, on the other end of the phone, listening to us for a minute or two until they hear something that relates to their world then the subject abruptly changes to something more comfortable to discuss. Something other than a little boy behind in his development, a little boy with a brain injury caused by vaccines.

Our new family are those of you who read and share here and on other blog sites. Those parent advocates with the experience to know how to talk us down off the ledge were particularly helpful early on and the many friends scattered all over, those that email and encourage us on a daily basis.

We have ignored the life we had 2 years ago and fully embraced our fight against autism. We had no choice, it’s a reflex.

I was investigating a story a while back about a woman who awoke on her downstairs sofa to the screams of her 4 year old daughter standing at the top of the stairs, the entire second floor was engulfed in flames, filled with smoke, the little girl screamed for help. The mother climbed the stairs, feet away from her daughter, a few more feet away from her 2 year old son enclosed in a crib, she stopped, turned around, and ran out of the house to await the fire department. She left the children inside, said it was too hot.

The 4 year old survived with burns and smoke damage to her lungs, the little boy burned alive. It was too hot.

How is anything too hot, too dangerous, too difficult to keep a parent from rescuing their child, their screaming child?

The rural North Carolina town of Tabor City charged this woman with arson, charged her with First Degree Murder partially because no one could believe a mother would not have died trying to rescue her children unless she intended to kill them. The defense attorney called in an independent arson investigator that refuted the State’s evidence against the mother and the woman was found not guilty. A wire shorted out because of a leak in the roof and it started the fire in the attic. To this day though, these good God fearing, simple tobacco farmers and textile workers without a psychology degree anywhere to be found among them, adamantly deny her innocence. Nobody would leave their children behind, nobody. They’ll tell you if you ask, “She got away with murder!”

Our autism community is a lot like Tabor City, North Carolina. Each of us smell a little like smoke as we stand among the charcoal ruins of our child’s bedroom holding the hand of our son or daughter talking about all the mess. We are parents, firefighters, we are simple people that will sacrifice anything to rescue our children. We do not see it as heroic, we do not really even notice the heat, we, as my wife said, “just do it” there is no thought, no hesitation, we just run up the stairs and grab our kids. Their life depends on it, as does our community. It’s just what is done. It’s instinctive, it’s who we are.

There are two things that bug me when outsiders come into our autism community, meaning well of course, they say, “It could be worse.” My response is usually, “A leaky boat will still sink, no matter how small a leak.”

The other thing that has increasingly begun to irritate me is that, “at least autism is not fatal”,  I’m sorry but didn’t John Travolta’s son Jett die recently, didn’t a 9 year old girl die when she drown in 3 inches of water, how many kids diagnosed with autism wander off, float down stream, found 100 yards from the house frozen to death? How many adults with autism live to see their 60th or even 50th birthday?

My wife keeps dreaming of our three and a half year-old son being run over by a car. It’s one of those once a month nightmares that have plagued her for the past 24 months. This morning she finally caught the driver of the car, pulled him out, threw him to the ground and began beating him. She woke up sobbing, she said hitting him was like hitting a marshmallow, it didn’t phase him, he just looked at her like she was crazy and the people that had gathered didn’t seem to sympathize much less want to help. She said, “No one cares, no one but us.”

I remember years ago hearing of a celebrity that bought an entire town. For the past couple of hours I’ve been thinking how nice it would be to move into a community with people like all those I have met online. Our own Board of Education, our own hospital, our own church, our own playgrounds, our own grocery stores, restaurants, parades, movie theaters and our own little neighborhoods to trick or treat in.

I wonder if that little town Tabor City is for sale? Maybe they have those nice grandmotherly crossing guards on the oak shaded street corners to help children keep from getting run over. We can dream can’t we?

Tre Benson is an art director and sometime crime reporter from North Carolina whose proudest day in his life was watching his 3 year old brave the waters off of Wrightsville Beach standing unassisted on a surf board with Surfers Healing founder Izzy Paskowitz. His son’s story can be found at Ben's My Son.
 

Comments

Cherry Sperlin Misra

I had a dream too- A daydream- My daughter , instead of being a neonatologist had started a nice pediatrics practise. She wouldn't give too many vaccines and none with mercury.
Oh dear- Thats when the problems started. Without the mercury all those kids had good immune systems and rarely got sick. When they did get sick it wasnt anything exciting like Kawasaki or Thrombocytopenia- It was just colds and flu. So my daughter would have a really unfulfilling practise and near zero income. No grateful parents either. You know how people are- When things are going ok, no sick kids, they just forget about you and go on with their boring little lives. So I just let my daughter stay in the Neonatal Intensive Care.

john Pike

TRE IT"S TRUE BROTHER YOU GOT MAD SKILLS MUCH RESPECT AND ALOHA MY FREIND

karen

Both my husband and I cracked teeth grinding them at night as our son, a runner, routinely got out and ran off. Nearly drowning a couple times. Once riding in his diaper in a police car as the office went house to house.
I would hyperventilate over it as I laid down to sleep at night. He couldn't even respond to us calling his name. Our other kids and neighbors were trained to immediately start a search party. Once a neighbor found him under his truck and another time at the edge of a busy road.
My son couldn't respond to his name but he could figure out any lock or safeguard I had on the door in seconds.
So we had 110db alarms on every door. I made sure I could hear them in the shower. We bought the alarms that could only be disabled briefly with a keypad.

I can so relate. We have gone to the mat for my son financially and spent our life savings. We have nothing left in the bank.
We have invested thousands of hours in sweat equity and I would do it all over again. In a heartbeat.
I only wanted him to just be able to say "yes", "no" or "that hurts". I would have settled for that.
Today he is mostly recovered and verbal.
He operates at grade level with help and it is like a symphony to hear him say "I love you Mommy!"

I don't "get" parents who won't try to help or worse yet gripe about it.
We have been slugging it out for 6 years, ours was not an overnight success.
Every day I push my son to his potential feeling the clock tick down to the day we are gone and he will have to survive on his own.

There isn't a moment to feel sorry for ourselves or wonder if we should stop helping him... just accept his condition.
If I took that advice from the bonehead neurologist we saw at age 3, he wouldn't be talking, reading, writing and playing with age appropriate toys at nine.
No get me the ax...I'm goin'in!
Save me a spot in the Amish section of Tabor City.

Taximom

I'm so glad you found an angel--without even looking for one! I hope things continue to look up for you and your family.

Somehow, I doubt you would have had this experience in Tabor City...

Madvocate

I read this article this morning, and one line stuck with me all day: A leaky boat will sink, no matter how small the leak.

Thank you Tre for validating all parents' immense concerns for their children - no matter where they fall on the spectrum of vaccine harm.

For an art director, you certainly have a way with words.

Concerned Professional

Keep writing Tre,you have a talent to show
our feelings,pains,dreams and worries.Feeling alone,feeling isolated,doing our very best to our special needs children can be very draining. It is important to buid a supportive network of people and friends around us.Yes it takes education,information to the public,family and friends to really become supportive our children and the parents. Autism parents can get together and have a list of people
(Naturopath,Social worker,Dentist,Chiropractor,Hairdresser etc.
who are knowledge-able about autism and able to provide excellent care to our children. Join the Autism Society in your town, if there is none then start up one. Together we are stronger and also able to
get more political and demand better care and services for our children.We have a long way to go yet. I also get those awful dreams.It is about what happens to him when I die. I see him alone,hungry,clothes worn out,the money disappeared,he is lost on the street. I think we have lot of fears and it comes up in our dreams as nightmares.I think lot of people or family members just do not know what to say. It is always easier to change the subject.Yes deep inside I feel alone and I keep praying to have the strength to do my very best for my son. When I see I little smile from him,that is my gift.Amen,Tre.

ginnie

I'm so happy you got a hug today Tre and that you accepted it.
I've been trying to "come out" more too. Our communities need to know it's happening and why it's happening. I figure if I'm going to have to disclose my son's diagnosis, you're going to have to hear what caused it. Until we are able to enjoy all residing in the same community, this divide and conquer (just like how they evenly distribute vaccine lots so there's not more obvious evidence of hot lots in one town) is impeding our voice.

bensmyson

I am extremely grateful to all those who took the time to share in a thought I put to words one morning as I struggled to grasp the common thread we all share as members of this community we were inducted into.

I am out of town working and I ducked into an antique store yesterday, small, nice litle shop that I have visited before. The shop keeper recognized me and we began catching up. We talked for 20 minutes and the conversation began to drift towards family.... Ben. Normally I would just gloss over things, "He's a handful" "You know how kids are" "I hate being away from him" But this time I was a little bolder. I had the opportunity to read some of your comments to my post earlier in the morning and maybe felt you at my back. I said, "He has autism, it was the vaccines."

The white haired gentleman shopkeeper clutched his chest, patted it and tears began pooling in his bright blue eyes and he said,"Oh God, oh I'm so sorry, that's horrible, it hurts me... I'm so sorry." He actually hugged me, I didn't resist, I held onto him.

I could go on and on about this man, and how incredible the experience was.

The long and short of it is he owns several houses and he offered us one if we wanted.

There are miracles out there, angels among us who are willing to sing in the choir, lifting our spirits as we pray for each other. Something is happening, maybe it's just me, but I have a feeling, just look at the amens, we are a church and we shall enter the promised land, our children will be redeemed. I sense it.

I meant to only say a quick thanks for allowing me to share with you, so from my wife Erica, Ben and myself, thank you for your amens.

Tre

rileysmom

Jacey, You are absolutely right about the town growing and growing. Maybe this is what we need though. To have all children and adults with autism in the same area. Maybe then people will see the extent of the problem. SEE these children. Instead of being spread far and wide. It may be the only thing that would make an impact or impression on people. So they stop standing around gawking with their mouths hanging open.
I spoke to my husband about this last night. I asked him IF we had a town to go to that was only for families affected by autism, would you pack up the whole family and go? His answer...Yes. There is nothing here that would tie us to the this area. No jobs, no specials treatments for Riley, my other children could adapt easily. Family...oh, well, they roll their eyes when I walk in a room anyways so that wouldn't bother me either. So, yes, we'd do it in a heart beat...it would be better than what we have.

Ann Benson

Autism is just one of the effects of vaccines.
Anyone who has had vaccines has been injured. I have seen children who have childhood diabetes, mental retardation from brain swelling and seizures, cancer, anxiety and depression, obesity, eczema, learning disabilities, asthma, and allergies and multiple and ongoing ear infections. In our school district 25% of the middle school children have been labeled learning disabled. This 25% doesn't include other medical issues.

The pediatrician to whom I took my children had a double practice; after she vaccinated the children eventually they would go to her followup practice, which was treating ADHD.

The children who escape full-blown autism and go on to college have anxiety and depression, panic attacks in epidemic proportions. Problems with alcoholism and legal drug use are rampant. Most of the students are taking anti-depressants and anxiety medication.

Our education system is in a shambles. We have 'No Child Left Behind' but the truth is that all of our vaccinated children have been left behind. The schools are struggling to meet their needs while, at the same time, the vaccine inoculations are being stepped up. It is like running on a tread mill, the teachers go faster and faster but they get nowhere.

Our government is fully aware but have 'sold their souls' to the pharmaceutical industry. They continue to threaten and bully parents into submission for strictly 'sociopathic', greedy reasons.

Autism Grandma

AMEN BROTHERS AND SISTERS!!!

Thank you Tre for your gift of sharing your thoughts with all of us, Thank you Willie for being a medical doctor who is willing to stand up and fight, and may your faith in God and His Son be your "fiery sword".

Thank you everyone here for posting your thoughts, your dreams, your nightmares, your abandonement by your family and friends, your hopelessness, and your hope, love and determination to keep fighting the battles to "take that hill".

I am feeling so overwhelmed, physically and emotionally exhausted, but all of us here end up feeling this way, don't we? In reading everyone's thoughts I am reminded of all of the answers that God has directed me towards throughout this autism journey and throughout my life prior to this. There will be more answers to come...

But oh the Nightmares...I used to have recurring dreams about the house on fire, but the firemen wouldn't come to put it out, and another continual dream where someone is chasing me trying to kill me, but the police never show up or I can't get through on the phone to them...the people who were supposed to rescue me were not there. Sometimes this sadly includes our own families in real life. We can't reach them to make them understand that we need their help and they ignore us or don't respond. But there are other "mothers and fathers, brothers and sisters" for us, even if they are people we have never met online....We know them from their written expressions as kindred spirits who are "all in the same boat", bailing water as fast as we can to stay afloat. The Vaccine Titanic is sinking but we are grateful that we are among the fortunate few to escape to the lifeboats.

I had a Beautiful Dream recently: I was looking out of a picture window that was cracked and broken, so damaged that I couldn't see the view outside until I found a place at the bottom of the window that was not cracked, so I sat down on the floor so that I could see the beautiful lake, trees and flowers that were just beyond the window. There were some children there that I didn't know, but I asked them to sit down with me and look out of the window and we all agreed together that "Yes there is a beautiful world out there".

When I woke up I was wondering about this wonderful dream because I really don't feel that we are living in a "beautiful world"....Our world is so full of toxic chemicals and poisonous behaviors. I have had to stay in my protected home environment 95% of my life for the past 20 years since I became disabled by a toxic solvent injury. However through being "driven by desperation" to research for answers along with continual prayers for guidance I have been blessed with solutions which have greatly improved my health, although I am still extremely chemically sensitive which prevents me from venturing into the outside world.

God had clearly directed me into the world of nutritional and other natural medicine therapies long before my grandson developed Vaccine Induced Regressive Autism two years ago, so the "Silver Lining to the Clouds" has been that my understanding of natural medicine provided me with answers for my grandson from the day that his last vaccines pushed him over the cliff. Since then, as with my own health journey, my grandson's recovery journey has been a Progressive Revelation. Like myself, he has improved dramatically although like me he has been severely damaged by a Chemical Injury, and is not and may not ever be the way he was before this happened. But the blessing has been that we did not waste 5 years with the medical system like I did myself, trying all kinds of toxic drugs which would have only made him worse instead of better. When Autism happened to my precious grandson, I was very grateful that God had enabled me to be healthy enough to help my daughter to care for him under such trying circumstances. And now I have so much appreciation for my grandson's continual recovery. But I never thought that I would ever feel "grateful" for my own suffering until now, and finally I am able to say "Thank God I was poisoned!!!"

I keep thinking about this Beautiful Dream and I now realize that it was a Message of Hope and I am thinking of the many Bible scriptures which foretell the time when God will restore the earth to it's original Paradise condition when he establishes Divine Government through his Son. I need to focus on this in order to resolve my intense anger at the evil parts of our world and those who are responsible in Human Government for the suffering of so many innocent children. The same selfishness and greed in this world that has caused so many deaths and vaccine injuries also causes 30,000 children to die every day from malnutrition, starvation and unclean water. I am so grateful that my grandson is still alive so that we can keep helping him to improve his life, and in spite of all of these "Trials and Tribulations", he has improved my life.

"Life is an Ocean
Love is a Boat,
In troubled waters
It keeps us afloat"

Twyla

Bensmyson, wonderful to see you graduate from making great comments to expressing your experiences in a full article!! Please keep writing!!

Michelle Hatfield

Amen! My oldest son, almost 8yrs old, has autism and we've known about his condition since he was a little over 2.

I've been immersed in this life for approx. 6 yrs and I'm always amazed over how emotional I still get when autism is discussed. Especially when others share their stories here...maybe because I don't feel alone. I appreciate how freely parents express their feelings & thoughts about their struggles. That my decision to heal my son is understood and valued among you all. This is comforting and encouraging because I'm not just an "obsessed mom" who can't accept my son's prognosis. I am a person, among very many intelligent individuals, who wants the truth acknowledged about how autism came to exist...and most importantly, I want its complete eradication.

WILLIE

Amen Tre, great post, very real in terms of how people see us and our child. I am a physician and surgeon and knew nothing of autism a couple of years back. It was some far and distant reality that had nothing to do with me or my family because we had no "genetic predisposition". Then my wife started speaking about autism and our daughter Elika and I, still knowing nothing said "get it checked out". I still believed what the pediatrician said. Then all sorts of weird things kept happening, I finally confronted the pediatrician as well as several other people at an IEP meeting all said Elika did not have autism. I still did not have much knowledge about it because I trusted the experts because that was how I was trained, not to try and supplant those who are experts in their field. What I did not know was these were not experts but idiots and sheep in white coats following directions from sexual perverts and pharmaceutical pimps. I always told my wife prior to my awakening about my daughter's autism that if I thought my daughter had autism I would wrap my arms around it and embrace it and conquer it that I will have no shame about my child as she was born perfect and healthy.

I subsequently watched a floor time DVD by a Dr. Greenfield and cried because it confirmed for me that my child was autistic. I confronted my pediatrician and everybody else, I got in people's faces and disowned family members and started throwing law suits around and raising hell with everybody. Hell raising is a necessary evil and I believe in hell raising and that you have to respond to a problem like autism aggressively and decisively. Therefore I read the literature everyday that I can, and prepare for my next autism fist fight because I am well trained and I know I am right and that autism is a direct result of vaccination and when you are are a physician it matters that you are right and that is what people pay me for to be right. I will prove vaccines cause Autism and hopefully figure autism out because I think we may be able to recover and cure every child or adult that was injured by vaccines.

So I have a dream too, a day dream where I figure out autism completely and I go around and give people their lives back. Patients will leave institutions and talk about their life experiences as previously autistic people who had been given up on by their parents and families just like the children in your story. Young children go back to regular schools in regular towns all over America, mothers and fathers and sisters and brothers have great Thanksgivings and Christmases because they have so much more to be thankful for and now have a ton of free time to express their thanks to God for all of his blessings and especially his son Jesus Christ and his Holy Spirit and the latest greatest blessing of healing for their child or children because God can make us all like new, perfect just like he made us and our children before and he can do it or arrange for it right here on this earth right now and I do believe that and I do ask God for that for my children. In my prayer I also ask him to give me a cool head and a calm demeanor and I promise him that I will not do anything to make him look bad or represent Christians as violent and incorrigible, because in addition to having no fear in my heart and a willingness to do anything for my wife and children God and I both know I can be a hot head. Therefore when I discuss my findings on national TV and the internet and layout the evidence (that grows daily) that vaccines do cause autism and that the whole thing is a diabolical plot by some twisted individuals and companies to sell vaccines gain wealth for a variety of unethical and bizarre and perverted reasons. I am clinical and dispassionate and scientifically matter of fact about the all of the individuals and companies responsible for this worldly neurocide of children’s brains and destruction of families perpetuated by the medical system of the most powerful country in the world gone amuck and how we have let the entire world down by our reckless disregard for science and the truth. I will calmly tell them we should be thankful for this opportunity that we have been given to right this wrong that WE MADE and apologize to the entire world of parents and children. Finally when the commentator gets around to asking me how an Orthopedic and Spinal surgeon could figure out this problem in his spare time, a problem that is completely outside the realm and scope of his academic discipline I will calmly and confidently respond that I followed the advice of one of the great physicians if all time. The interviewer will predictably ask "who is that physician?" I will calmly answer the disciple Luke the physician who said in chapter 11 verse 9 of the book of the bible that bears his name "seek and ye shall find ask and it will be given unto you" Well I sought from God and I asked from God and here we are, yeah it was just that simple. So I hope your wife's dream never comes true Tre and I am praying that mine does and when it does we will all say AMEN,AMEN !!

Gatogorra

My dream is that I find my son in the bedroom of a strange mansion in a huge, ornate antique bed that looks like it was made with him in it--hospital corners. He seems to be sleeping but when I lift him up, I feel blood on the back of his head. He has a puncture wound in his skull just under the midpoint of the back of the skull, like someone stabbed him with an icepick. He's still alive but unresponsive. Strangers gather around the bedroom door and stare. I scream at them, telling them to get help and, when they won't, demanding who did this to my son and they look askance or at their shoes. I carry him out into the middle of this group of people and shriek in their faces. Yeah, it's like screaming at marshmallows. I had this dream six months before we realized anything was really wrong and more than a year before we realized it was the shots.

For his twin sister, I dream I'm on the stand in court, fighting to get her back. A horrible tough woman with giant earrings who works for the state has taken custody of her. I can see my daughter in the stands being held by a stranger. I just end up screaming. I realize this isn't a courtroom on earth, the "state" is hell and I'm trying to get my daughter back from the underworld.

Isaac's Grandma

AMEN!!!! Well said Tre!
No one fully understands what we go through. I finally stopped sending things to my family and friends because I felt like they thought that I was "obsessed" with all of the research I was doing on the subject of Autism and vaccines and all.

I used to have a dream all of the time about a little boy who was drowning, and I would wake up in a cold sweat, breathing heavily, and not quite understanding why I continued to have this same dream. I remember in my dream I would reach for the child as he went under the water, but my arms were not long enough. I would jump into the water and try my hardest to save him. Nothing I did in my dream was enough. It left me exhausted and crying so hard. I remember strangers around me just watching...doing nothing as I was drowning myself trying to save this little boy.
At the time I thought that my dreams were about my Grandson who had to move far away from us. He moved into a two story apartment with a pond out back. I was certain that he was going to fall out of the 2 story window, or fall into the pond to his death.
As time went on, I realized that my dream wasn't about THAT Grandchild. It was about Isaac, my 5 year old Grandson with Autism. I realized that I had been (along with his parents) trying to do whatever I could to save him. Isaac's parents are doing the best that they can in this situation that we all share.
I agree with you about the Mother with the children in the fire. I have never understood how parents come out alive and children don't. I know that I would have to be dead before I gave up on one of my children or Grandchildren, No matter what!

The only good thing that has come out of this Autism epidemic is like you said....people who don't even know each other, but have such a strong connection through understanding that we are not alone. We are here, and we will fight together until the bitter end.
Thank you for such a beautiful post.

Jacey

I love the idea of creating our own little town .... where everything is "appropriate" for them. The problem is that the town would start to grow...and grow and grow! Eventually it would become a state...and then a country.
What keeps me up at night are the numbers of kids being diagnosed everyday is growing ... and growing. We have been on our ride for almost 5 years and "back then" it was only 1 in 250 kids with an ASD dx.
One day, I imagine there will be a website called "Age of NeuroTypical"....for the few lone survivors NOT affected in any way with autism. I think they may have to find their own little town.....
Thank you for your wonderful article, Tre.You speak for us all.
Truly,
Jacey

HeidiN

Amen! Teachers, counselors, neighbors, etc. who have seen my children before and after recovery and who have autism children of their own, don't ask me how. Instead they tell me, "I don't have time", "I am already use to the idea of taking care of them forever", or they say, "it's too stressful to do any special diets or find a DAN doctor". These comments anger me, and even make me think of child abuse. If they had cancer, would they withhold cancer treatment? No, of course not. I am waiting for the day when it will be common place for children with autism to get medical care, and for it to be considered odd not to.

we shall overcome

Unrelated to this topic, Kim, thanks so much for your recommendation about Enhansa. Our son always had a lot of problems with carbohydrates, any small amount would affect him greatly, more so than all other kids we know on the spectrum. Enhansa is doing wonders on him, he can now eat much more of the things he likes. Again, thank you.

we shall overcome

AMEN, Tre. You are definitely not alone, there is thousands of us here. Friends and family have abandoned us, but at least we run into each other in the virtual world and that is no small thing.

There is great potential for changing wrongly widespread practices when a community of affected parents share their common experience. For a story related to ours, read today's obituary for Dr. Ponseti in the NY Times. More than 50 years ago he developed a gentle non invasive method for treating and fixing congenital clubfoot. Although his method was much better than surgery, it took more than four decades until it was adopted as the method of choice. What finally made Ponseti become so relevant was the communication between affected parents sharing their experiences through the internet in the 1990's. Thanks to the internet, our eldest son had a Ponseti doctor lined up even before he was born. Our pediatrician back then not only misdiagnosed the condition (against the opinion of our chosen specialist) but recommended a ped orthopaedic surgeon instead. But that was back then, before his autism dx, when we thought our son's clubfeet was a horrible tragedy. Thanks to Dr. Ponseti and the good advise of other parents, his feet are completely fine. As for autism, thanks to DAN doctors and parents like you he is getting better every day.

Never underestimate the power of firefighting parents coming together on the internet. We make the medical field tremble, believe me, I know. For the first time in history lousy doctors have no place to hide when they screw up.

MAKE AUTISM STOP

Well said!
Previously, I had referred to the state of trying to recover my autistic son as "A mama bear with fur on fire". I now have a conversational term for the object of that bear in the circling social systems:
"hitting a marshmallow"


MAKE AUTISM STOP

Taximom5

I found your post profoundly moving, especially the part about your wife's nightmare.

However, one thing confuses me: your story about Tabor City. Do I have this straight? The mother was unable to reach her children, and it was proved that she did not set the fire, yet the townspeople think she committed murder anyway, and you want to MOVE there?

Sounds like the kind of people who would think that it's our fault that our children are autistic: "you couldn't rescue your child from this, so it must have been your fault all along."

if we can't save our children from vaccine injuries, do we really have the right to judge a mother who couldn't save her children from a fire?

Am I really the only one here who sees it this way?

Or did I miss something?

Karin

While I haven't really had an issue with friends, my family has been a nightmare! Their responses can be described by the following: Contempt, rage, disgust,revulsion, and isolation. I almost would've been ok with simple denial! They have turned their backs on us and excluded us from the family- and the rage is directed at me! They are embarrassed by me- that I redirected my focus from my business and success (and my retirement!) as they see it ($$ and material accomplishments) to recovering my daughter and giving her every opportunity to live an independent and satisfying life. They have told me that I have an unnatural and unhealthy obsession with both my child and autism. My father has told me (speaking for all of them)that I am wasting my talents...that I should just "put her in special ed and go back to my career"!!

I've also been told that I am ruining my child's chance for a "normal" life by letting it be known that she has autism...by keeping a sticker on my door that alerts police/fire dept that a child w/ ASD resides within and might not respond in a typical way to an emergency...

What else? Upon learning that my daughter had Lyme disease, my parents became enraged that I didn't simply take my daughter to CHOP for the standard CHOP protocol of 3 weeks of antibiotic- I was "looking for a reason" to drive all over the region looking for a doctor that wasn't needed rather than just giving her the three weeks of antibiotics that 'everyone knows' will fix the issue...

I could go on forever with these quotes and others more horrid. The shocking thing is, I have a family with autism, AD/HD, and celiac disease on every branch of the family tree! Yet, they are the least understanding of almost anyone that I have come across anywhere. Their behavior goes wa-ayy beyond simple denial...it's as if their lives depend upon it! It's sick, it is awful, and I will never understand it. Never. As someone else said here- they would RUN to support any other family member with a sick child, or a child with severe allergies, or an injury...why not this? What parent(s) and child(ren) need the support more- yet are least likely to get it??? WTF??!!

Cathy R.

Amen.
My dream is he's drowning...just below the surface...I can see his face and then he disappears...wonder what that could mean?
Amen.

PhillyMom

Amen! I think some of the lack of support issues regarding autism has to do with "crisis" vs "chronic" illnesses. In general, people (friends, family, neighbors) are able to handle "crisis" illness (heart attack, operations, even cancer) pretty well. You bake some casseroles, throw in load of wash or two, help out with the kids -- for a finite period of time. Chronic illness requires a lifetime commitment, a permanent adjustment, a change in lifestyle. I've seen it not just with autism, but with my husbands' MS.

quiet in the south

I have dealt with autism with my youngest and drug addiction with my oldest. (both issues of methylation, interesting stuff) Two diseases that do NOT get you any sympathy, support or casseroles.
At least when your child has cancer (which I would never wish on anyone) you get an outpouring of love and an endless supply of casseroles.
It definitely makes you bitter. But sadly soon everyone will be living in autism world.

Alison Davis

I've been waiting for you to post on AoA. And let all God's people say: AMEN. I, too, have been having a recurring nightmare, but, unlike your wife, there is no main event: just voices reciting old and new autism statistics mixed with Orton-Gillingham methodology, Verbal Behavior prompts, and Wilson Method drills! Harrowing! I wake up exhausted from the sense of urgency in the voices. The last two weeks have been spent in an intensive training to tutor my 14 year old son with autism in reading, writing, and spelling. A friend asked if this was worth it. After all, this is time away from home and I have two other children with autism that also need my attention. Absolutely. I will help "By any means necessary". Meanwhile, I'm hoping the universe gives an autism break, at least at night.

Our parent hearts may be broken, but I believe our children's spirits cannot be touched.

Tre, keep writing, please.

Tanners Dad

I have been thinking about your post all day. I just got back from a University of Illinois ZBT Fraternity Philanthropy called Alley Oop for Autism. It was an Awesome event. Sorority young ladies were paired with Individuals on the spectrum, drills were run, game was played, and lunch was served. Good Time, Educational, Money raised for Stuart I Raskas Friendship Circle to increase programing for children with special needs. I am not sure why but I still felt alone... Are we selfish? How much more can we expect...

One thing though if rates continue to climb every City will soon be Autism Town. Let's just pray the ignorance goes away & services come to stay!

Cathy Jameson

Excellent! Tre, you had so many visuals for me in this post. I fear the fire in the house scenario not because I'd run away from my children but since we watched our neighbor's home burn just over 2 years ago. Ronan stood at his bedroom window and stared at the fire as it engulfed the house--at that time, he had no fear and really didn't feel pain. My husband and I had jumped to action as quickly as we realized the impending danger but I still have that nagging feeling what if it happened to us--would Ronan know how to find safety? This neighbor's house was struck by lightning and not too many months later, another house around the corner was struck and burned completely too. When I know a lightning storm is in the forecast, you better believe I'm in a fight or flight mode.

I've also started to have some scary dreams too--Ronan's is hardly ever in my dreams, but the last two or three scary ones I've had, I physically have to wake myself up from the dream. Ronan was about to have something awful happen to him.

There are days that the reality of Ronan's problems make me shiver. Finding like-minded families to support each other has been one big saving grace. Thank God for these personal posts and stories on AoA! Keep up your writing--you have a ton of AMENs and I bet a whole bunch more coming.


Stagmom

Don't laugh - the founder of Dominoes pizza, Tom Monaghan created "Ave Maria, Florida." A "city" that is Catholic Catholic Catholic. It's like Walt Catholic World. Why not a town for families raising children and caring for adults with autism? I'm not sure Catholics need the segregation. But imagine for us, respite centers on site. Jobs on site. A real community. (I'm Catholic and Ave Maria creeps me out, frankly.)

Autism already resides in its own world. Even among misfits we're misfits - let's not kid ourselves that it's any other way. Autism doesn't fit into any traditional disability, educational, medical or social box.

Jessica

Family and friends deserting you once your child has been diagnosed seems to be such a reoccuring problem from all the stories and posts I read. I would know - it happened to me as well. In the early months after our diagnosis I can still remember how shocked and disgusted I was with my family at their total and utter lack of caring and concern for my child and my family. Yet when another child in my family spent a few hours in the hospital for dehydration everyone rushed to their aid.

What is it about autism that causes family to run away? I truly believe if my child had been diagnosed with anything other than autism, my family and friends would have reacted with much more caring and compassion. Instead what I received was no one, NO ONE, reaching out to me, no one, NO ONE, showing the slightest bit of concern for us. People I thought I was close to, people I thought I could lean on. *sigh*

"AutismTown" sounds good to me.

Jill Rubolino

Amen, my soul brother!

Jules Boise

AMEN !
I wish it could happen in the U.S. I have often thought of buying a small island somewhere and living out the rest of our days with our two sons there ... I'll let you know if I find one for sale. You will be our mayor !

MB

Yes, this *IS* the hill I'm willing to die on.

Frank Rich has a great Op-ED today in the NY Times on the incredible gullibility of the news media. As I was reading it, I kept thinking "autism/vaccines/swine flu". Could we add a smart, inquisitive free press to your town?

Renee

Amen!!! Let me know when I can start packing up to move!

Angela

Amen! Clean vaccines are not a big deal to anyone unless they have felt the effects of a reaction like autism. Our lives have also changed dramatically since our son age 3 had his mmr vaccine 12/06 & 05/07. After his May vaccine he had 8-11 diapers a day of ick. We've been to several doctors since. It's difficult to find a balance between spending time with my son and researching all the hopeful treatments..

Amy Becker Clark

Amen, from someone who has been instinctively running through a burning house for more than 13 years now. But we need to do more than dream of AutismTown. We need to make it a reality. We have got to come together to solve our problems, from creating our own schools, to sponsoring our own biomedical and treatment research, to developing the kind of assisted living facilities our older, non-recovered children will need when we're no longer here (and there are lots and lots of them, despite all our best efforts... there brains just got too damn fried back in the early 1990s.) I am losing patients with those who look to the government to solve our problems. Has either the IACC/NIH/CDC, the state Developmental Disabilities Division, or the local school district really stepped up to solve the autism crisis? When I think of all the talent in our community, I find it hard to believe that we can't get done what needs to get done. Why CAN'T we create AutismTown? (Now, now, no fighting about how to answer that question.)

K Fuller Yuba City

Thank you so much for your honesty. Autism families are already living in our own community, an alternate universe, with totally separate experiences that unaffected families cannot or will not understand. As the years click by, we get used to people turning away. I never know if they are turning away in shame or disgust. I no longer care. I have been turned to steel. I have been turned because most of our friends and family turned away. Sick and tired of hearing "no wonder you have no friends, all you talk about is Autism".
Now the hardest thing we face is opening up to anyone who is ~not~ turning away. It gets hard to recognize! We are lucky to have a couple of die hard friends in our lives, and my sister tries, but they do not live near us. I wonder if they were close by, if they would have stuck around, how sad is that to have no expectations of other human beings?
When someone in our family said "You can't make your whole life about Autism" I shut down to family. Screw you I say, how can we not? Autism may be hotter than fire. So many of us are walking right through it.

Terri Lewis

Amen, amen.

It's survivor's guilt. Parents don't want to hear it, because they can't really imagine it happening to them, and they don't want to.

They don't want to believe us, because then they'd realize how common all of this has become.

rileysmom

When is moving day Tre? I'll have my UHaul packed in a matter of hours. Hell, I live in a mobile home so I'll just slap the wheels on!!! I have been saying this FOR YEARS!!! We should just live together. Have our own STATE. Have our own Constitution. You got your AMEN Tre!

Carol Brannaka

Amen is right!!! My nephew did rescue his 2 yr old daughter from a fire-he ran thru a room-it was burning-the melted carpet on his feet burned his legs and feet badly-he got to her, put her out a window and fell out it himself, laid in a ditch, missing, died in the helicopter on the way to burn trauma, was revived, spent a month there-still battles the burn wounds-she is 13 and he would do it again anytime-as would you and I-my boy is 11-he has autism and I live in your world-you are not alone God BLess...

nhokkanen

Amen, Tre. Thanks for sharing your excellent analogy, tragic as it is. Autism parents often do lose their lives when they embrace biomedical treatments -- they lose connections with old non-affected family and friends, then school issues arise, and even church can be awkward or unmanageable.

I'm sorry that your wife has the recurring dream. That "hitting the marshmallow" feeling is one of such discouraging powerlessness. I pray that you both find the right combination of treatments to bring back your son's health fully.

Renee H

Let me know where and when, and we will most definitely move into that town! What a relief that would be!!! Great article!

Renee : )

Wade Rankin

Amen, and Amen.

joy

Goosebumps here. Thank you.

Jack

I often dream of that town.

That town where the school is filled with lights that don't hiss and crack. It's also surrounded by a few weeds because it isn't drowned in pesticides.

After a calm day at school, in which the kids all ate appropriate snacks, maybe we head out to dinner to one of the town's many GF/CF restaurants. In the one we chose, it's quiet, or at least there isn't blaring background music.

Then maybe we head out to a minor league hockey game where no fog horn blares following a goal.

We have a tough time chosing an OT in this town, because so many are so qualified and they get it, they really do.

It's not paradise, so the kids do get sick. But the doctor is good with them and recommends some good vitamin supplementation to boost there immune system rather than a third course of antibiotics to ravage it.

The park is nice too. They keep it clean so I don't have to worry about the kids putting cigarette buts or the like in their mouths.

The best part though is the way people help each other out, the way they help carry your bag to the car are the store when you are battling through a tantrum (or two). They all know so they understand how and why to help.

There aren't things like ordinances against fences in this town, we know you might need them. But just in case, people drive slowly through the neighborhoods too. They understand.

Yes, I visit this town a lot even if it exists only in head.

Tanners Dad

Amen with Tears. Thank you for being my neighbor, My friend, Comrade in arms, Defender of the meek and voice for the voiceless.

YOU tell me where & When to charge the hill... We know what is on the other side, But what the hell, those last few steps will not stop us.

We need all on board, Unity Within the Autism Community. We may not have money but we have passion Love dedication endurance and family.

Thanks Again... Hey Kim How about a new award...Post of the month. My vote is for Tre!

Cherry Sperlin Misra

Tre, Thankyou very much for your beautiful article that is touching and thought provoking. Im glad that you use the term "brain damage" for autism. It recalls for me , standing in my school,about 14 years ago and seeing an autistic child for the first time and thinking, "Autism? This looks like brain damage!".
WE still have a lot to do in educating the general public about autism. Probably its difficult to think about that when you are so deeply involved in recovering a child. Most people would not know that many or most autistic kids are mentally normal, but appear to be mentally handicapped. Most would wonder why you are obsessed with something that is just a mirage- Surely such a child will not get better, so why not accept it.
At the same time I do wonder about human capacity to care about others. I once had a jarring experience of telling 2-3 mothers, who I thought were very caring persons , about a child in my school who was being abused at home. They did not appear to want to hear about it. That upset me , but I still feel that we must resist judging others.
Your little child is so lucky to have parents who fight autism together. God bless you for that.

Teresa Conrick

Absolutely beautiful! I want to move to that town, too. I often envision it like Bedford Falls minus Mr. Potter (aka It's A Wonderful Life). Mr. Potter would be the symbolic mean guy representing all that is bad for our kids.

Your wife's nightmare rings true for me and I bet so many of us. Mine is water, where the dream always ended up with Megan disappearing into water - like a phantom that she was following and I could do nothing. I always woke up in tears with that feeling of terror and helplessness. Not many in my life understand the daily journey with autism either so I am drawn to our community for the rays of sanity and compassion that the "outside" world can not provide.

Thanks for sharing.

Kari Buxton

Thank you for eloquently saying what my hubby and I feel every single day of our lives, since we have been on our autism journey, for the last 5 years. We have 2 kids on the spectrum, and feel so alone sometimes.

Theresa

What a moving story. Amen, Ben's Dad. Amen.

michele i.

Great post. Let me know when you buy that town. :o)
~michele

Alison macneil

I'm speechless. I can't do justice in a comment to how closely you articulated my feelings. Beautiful, just beautiful.

Kent Heckenlively

AMEN! AMEN! AMEN! WOW, what a powerful story. Thanks for putting into words what so many of us feel. It is amazing how much of the world turns away from us. I hope to read many more articles from you.

All the best,
Kent Heckenlively

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