Tuesday, June 11, 2013

Alex Spourdalakis Found Stabbed to Death Sunday June 9, 2013


UPDATE 6/19/2013
Please Make Plans no matter where you are to take a moment to remember the tragic life of Alex 


As a community, we will come together for Alex's family, our children and families. Together we can create change for all people affected by autism that have been left behind and forgotten. Together we will remember Alex and not let his passing be in vain. Alex was our child.

The Candlelight Vigil can be held in your home, the Internet, or a public vigil in your local area. If you plan or become aware of a local Candlelight Vigil for Alex, please share the information here so others will be informed and can attend.

Please keep comments respectful and peaceful. Although emotions are high, this is about Alex and other children. Know that people who care deeply for Alex are viewing. Let's be sensitive to those who are grieving for Alex.

The following was written for this event by Lisa Joyce Goes

Thank you so much Candyce and Dawn for remembering Alex Spourdalakis in this special way and for taking the time to coordinate this event in memory of him.
I cannot thank everyone who intervened on Alex's behalf during the last few months of his life. On behalf of Autism Is Medical, The Autism Media Channel, Dawn Loughborough and myself, we gratefully acknowledge that every single person who involved themselves went above and beyond for Alex. I still cannot accept, that the efforts of hundreds of concerned parents and activists around the world went ignored. I cannot accept that a 230 lbs 15 year old, was released to his mother's care after a steady regimen of restraints, sedation, and psychiatric medicines. I cannot accept, that despite the delivery of sound repeatable science to the MANY physicians who were given an opportunity to treat Alex's very real medical conditions, his physical pain went ignored by every single person in a position to help him. His angst and misery escalated and escalated. Pain, violence, 911, repeat. Pain, violence, 911, repeat.
This has been Dorothy and Alex Spourdalakis's life for YEARS.
When I met this family, I met a mother at the edge of her life and her sanity. I met a violent sick child who could not bear life in his own skin. After 20 days of working with them, I pulled away, only allowing myself to work on their behalf on the periphery of my daily tasks. Because, the intensity, depression and darkness I experienced as a mere satellite orbiting their existence was too much for me to bear. 20 days and I felt hopelessness, perpetual sadness, depression, fear and unspeakable grief. 20 days for me. This was Dorothy and Alex's daily reality. Please believe me, when I tell you...this family had NO ONE. No supports. No help. No community. No qualified competent medical care. No soft place to fall. No hope. So very many of us stepped in to help. We implored the hospitals to treat this child. We begged our federal and state agencies to do something. We filed complaints, started Facebook pages, circulated petitions. We did all these things to avoid the worst case scenario. And it happened anyway.
Despite all our best efforts...
The press ignored us. The doctors shunned us. The hospitals dismissed us. The agencies with whom we filed complaints sniffed around but did nothing to intervene on Alex's behalf. We presented sound repeatable science to the physicians charged with Alex's care. Science that HAS HEALED AND REVERSED THE EFFECTS OF IATROGENIC AUTISM FOR THOUSANDS OF CHILDREN. It was denied.
For Alex's sake, please invest in our community and in each other. Please honor Alex by telling your own story. Please speak OUT to everyone who will listen, about what has happened to this poor child who was made sick and then abandoned by the system that claims to create "wellness". Please join in celebrating Alex's life, and participate in this vigil to honor his memory.
I wrote this about Alex the day he left Loyola:
Alex was embarrassed that he was meeting me and my friend, for the first time, without clothes on.
Alex is very smart.
He loves music.
I think he would very much like the experience of kissing a pretty girl.
I KNOW he is aware of every single word being said in his presence and he has a full understanding of what those words mean.
He has dreams and desires.
He wants friends and experiences and to discover the world around him.
He wants to connect with his own personal greatness, as we all do.
He has standards, boundaries and preferences.
He is present.
He is alive.
He is a human being.
What must this do to Dorothy? I thought this then and have not stopped thinking about it since. What must it do seeing that eternal boundless world behind the eyes of an ill child day after day after day, knowing that child wants nothing more than to just be?
Be recognized, be welcomed, be considered, be respected. Be seen. Be treated for his illness.
But his hands do not do what he wants them to do, his mouth does not form the words he wants to say. His body, despite his best efforts to control it, rebels at every turn. Nothing works. Add to this cacophony of mixed and undelivered biochemical signals, the constant inflammation. The pain. Yet, the desire to live, to emote, to share, to love, to learn . . . it is there, intact. Untainted. Pure. REAL. Hidden. Ignored. Restrained.
His pain explained away by this hospital’s great medical minds with the highly neuro-scientific phraseology, “He’s just wired differently. Autism is a mystery.”
ALEX MATTERED. Please, do not let him be forgotten.
Deepest Gratitude and Respect,
Lisa Joyce Goes

Carol Stott :-
"The autism community in the US and UK is in mourning. Shocked and heartbroken after Alex Spourdalakis was found stabbed to death on Sunday. His mother is being questioned. No-one knows the full story yet. Alex lived a life in pain. He had severe autism and recently confirmed gastro-intestinal disease. The same disease that has been denied by the ignorant and vile face of political amd journalistic expedience. Dr Andrew Wakefield and Polly Tommey travelled hundreds of miles through the night to try to get help for Alex. Age of Autism, the Autism One team and countless US moms, dads and autism advocates joined the cry and begged the media to help. In the UK Anna Kennedy and others rallied parents to raise awareness. The first time the media showed any interest in Alex's plight was when he was found dead. He had spent many of the last months of his life in pain, restrained and naked in a hospital bed. Illness denied, dignity ignored, the rest of the world turned its head. If ever there was a time to say this is enough, now is the time."
UPDATE 6/12/2013

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Opening Statement at Today's NVAC Meeting by DAIR Founder, Children's Health Advocate and Autism Activist, Dawn Loughborough. IT IS ON THE RECORD. 

Public Comment to NVAC June 11, 2013 
I preface my statement today saying, Rest in Peace Alex, a 14 year old boy from Chicago. This is the side of vaccination and children that NVAC must consider. What caused this isn’t fixed and can and will happen again for children in our nation who have multi-system chronic illness whose originating vaccine damage takes away their potential.
My name is Dawn Loughborough. I am here today on behalf of independent scientists, researchers and families who give credence to the cascading affects of vaccines impacting our nation’s health, to suggest that this committee has failed to challenge the medical innovation surrounding three fundamental concerns:
1. No high quality comprehensive safety study based on the Belmont Guidelines has been conducted on the vaccine schedule, and therefore, this whole approach to managing infectious disease could be a grand experiment on vulnerable populations. This is a research priority. 2. No retroactive randomized vaccinated v. voluntary unvaccinated health outcomes study has been conducted with regards to the recommended National Childhood Vaccination Program. No baseline data therefore exists on health outcomes of vaccination. 3. The January 2013 Institute of Medicine report saying The IOM committee uncovered no evidence of major safety concerns associated with adherence to the childhood immunization schedule…. sounds like a gap. NVAC needs to drive more of these studies because the studies have not been done.
Instead of conducting these foundational health assessment studies, this NVAC continues to advise more vaccines be added to the national childhood immunization schedule and the adult population. Continuing in this manner may further contribute to health issues for this nation, and as a matter of national security, it is irresponsible not to conduct a randomized vaccinated versus voluntary unvaccinated retroactive study.
In all fairness to public health integrity, the statement that vaccines save lives does not tell the whole story, and, be assured, this committee has a responsibility to the numerous children who have been impacted negatively to a point of national health crisis and enormous health care costs. Risk management innovation around vaccine safety must be put in place to create better health outcome results and recover those impacted. Handing a parent a Vaccine Information Sheet and sending them home does not attempt to properly advise, identify or pre-screen for potential risk in genetically susceptible families.
In these times where 54% of our nation’s children are chronically ill, 1 in 50 boys has autism, 1 in 6 have neurological disorders, and the highest infant mortality rate of all developed nations, all bets are off the table that vaccine safety outweighs practical acknowledgement of the vaccine injured child. This nation can and must begin to recover from the overwhelming physiological illnesses and costs associated with these health impacts. The American public has lost trust in the National Childhood Vaccination Schedule
which is why prior voluntary promotion has shifted to a mandating of the immunization schedule, done through school admission, insurance coverage, and Childhood Protective Services for compliance.
The assurance that this committee takes responsibility for how this proceeds is overdue. To be adding vaccines to the schedule not knowing the full extent of health impact via proper research guidelines on human populations, and knowing that vaccines inherently cause some children health problems, is of primary concern and impacts public trust in the National Childhood Vaccination Program.
When an airplane crashes, the FAA goes in and examines every particle of the crash, they examine the weather conditions, pilot flight plans and execution. And not one element is excluded until a conclusion is researched. Americans have the right to raise healthy children and are not buying it with the fear and intimidation of pandemics and ineffective immunization results. Parents know their children are very ill and that life changed after the administration of their vaccines. We have read the research on aluminum and thimerosal and recombinant DNA that coincide with uptake change points in rising chronic disease.
It is time to transform how this nation manages infectious disease, and as a nation acknowledge that children are vaccine damaged. It is time to enable physiological treatments based primarily on the table chart of vaccine injury to include neurology, immunology and gastrointestinal breakdowns. We should, for example, have innovative antidotes for each adverse event response starting with inflammation and encephalopathy.
In closing, first, conduct the comprehensive health studies, and, second make recommendations for preventive action. Innovations for managing vaccine damage and fall out have the potential to be immense and need to be informed by NVAC as the body responsible for advising on these vaccine matters. This nation will rise to the call for improvements. I believe in a world where it all works, where we manage infectious disease and have improved health outcomes for the nation. NVAC has responsibility for all of it, the lives that are saved and the lives that are impacted. Continuing iatrogenic practices has no place in our nation’s history. This meeting should mark a new beginning to get this resolved as a commitment to the well being of children. We don’t want this culture of vaccination, we want a culture of health.

UPDATE 6/11/2013

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 From the Facebook page of Lisa Joyce Goes'sstatus.

Dear Friends,

I am processing this tragedy in pieces. As day two of this horrific story unfolds, I ask three things. First, please, do not let Alex Spourdalakis and his situation fade from memory because, it will be the story of MANY MANY families (as it already is) if we do not UNITE and FIGHT THE REAL ENEMY TOGETHER.

As tempting as it may be to armchair quarterback, or more appropriately laptop lawyer, this issue...please, please do not speculate until we know the facts. Please do not judge, criticize or demean anyone who was involved. Your words are so powerful. Please use them wisely.

Third, I do not think the general public has any idea how immense the social effort was to spare this child. Literally hundreds of people, making thousands of contacts with state and federal agencies, medical care facilities, physicians on a daily basis. Hundreds of petitions filed. Activists from all over the WORLD engaged. With all that I am, I cannot grasp the magnitude of this collective effort...and that fact that it failed.

We must, together, lay down our arms and fight for the futures of all our children in Alex's name.

The enemies are the authors of autism. Not each other. Not children. They system that made them sick then refuses to acknowledge their existence. Remember, over the course of the next few weeks as we learn more, NOTHING changes this fundamental fact. Our children suffer and die as the result of corporate greed and apathy. There are many players, good and bad. But it is the system itself that is failing us all.

Respectfully, LJ Goes
From the Faebook Page of Teena Young
For Alex...
We all had thought we helped you, in our own mind...

But now as it seems we all had been blind.

If only the world would have seen and not just the few...

All of the suffering you had been through.

Maybe somehow, you would still be here today...

But now all that is left, is for us just to pray.

Praying for you to have a place of peace and of love...

Knowing now that your cared for by The Lord up above.

Right now none of us, can have a dry eye...

Because your life was too short, we can't help but to cry.

So please Alex, soar on with much joy...

That you always should have had, when you were a boy.

You will always be here in our hearts and our mind...

We only wish this life, could have been much more kind.

So Alex please, Love, Laugh and Play...

And know we all pray for you on this day ♥

UPDATE 3/28/2013

If you have been following this story you will want to know...
*There is a new Facebook page that you can visit, "like" and share! https://www.facebook.com/HelpAlexAndDorothy

*There is a Fundraising page now to raise money for Alex's care at an out-of-state  hospital. 

If you have only just learned of Alex Spourdalakis please scroll all the way down to read the daily updates. At the bottom of the post there are buttons to share the story by Facebook, Google+, email and more- Please use them!  

Forcibly restrained and medicated, being kept from an appropriate diet and medical care; Alex Spourdalakis is currently being held at Loyala Medical in Chicago, Ill. The goal is media attention to resolve this atrocity. Please do your part to help. I will be posting daily updates to this post. Scroll all the way down to see developments, letters you can copy and customize, addresses to send them to. Share on Facebook, Tweet to your followers, Like the Facebook page for more updates. Use the power of social media to #SaveAlex before its too late!

NO SHE [Dorothy Spourdalakis, alex's Mother] CANNOT JUST SIGN HIM OUT! She was forced to sign their consent forms over threats of DCFS removing him from her custody. It is complicated. Just know that spreading the word about the situation, having people sign the change.org petition, and finding an attorney to represent them are the priority. Read through all of the previous posts, Age of Autism page and Lisa Joyce Goes page [on Facebook] will bring you up to speed.


This is happening as we speak! Please share, call, e-mail and talk about this make sure people know! This could so easily happen to my Bear, to your son, your child, your parent, your sibling, your neighbor...

The National Autism Association has said:
This is heartbreaking - and sadly, not uncommon. Many of our kids with autism suffer from serious and painful co-morbid medical conditions which can contribute to "behaviors". Imagine not being able to tell someone you're in pain. Imagine doctors not even physically examining a patient who is clearly suffering, saying that it's just part of "autism" and prescribing anti-psychotics. It happens every day - and it has to stop!

Read about Alex, then download this new paper published by Treating Autism and Autism Treatment Trust. Print it out and give it to your doctors. Our kids deserve proper medical care!

***Updates have been added to the top here each day. To see how this story has unfolded from the 1st day it broke (day 19) continue to scroll all the way to the bottom of the article***

UPDATE 3/23/2013 - DAY 34

I am so very thrilled to report significant progress is finally being made in Alex's case! I am re-posting the latest update from Dorothy Spourdalakis as posted on Age of Autism today. From this point I will only post updates as they become available as it appears that the emergency has passed. Go TEAM ALEX! 


Update: Alex Spourdalakis

Update memo
Today, Alex and his mom, Dorothy, will be leaving Loyola hospital in Chicago, heading to an undisclosed location out of state where he will receive appropriate medical attention. Age of Autism Contributing Editor Lisa Goes offers this update from Dorothy Spourdalakis:

To all the people who cared enough to get involved:

Alex and I would like to thank everyone for their prayers, good thoughts and cards with beautiful drawings and best wishes. I would especially like to thank the one person who became my son Alex's silent benefactor. She is truly my son's "angel".
It is during times like this we as a family realize our full potential. We know no one will help us unless we help ourselves. The continued abuse, medical neglect, discrimination and ignorance have to stop. Vaccines have maimed too many already and there are many more to come. The CDC's latest stats confirm that. We are not going away, nor are we giving up. My son Alex is just one of millions of children and adults who no longer will be silenced.

We as a group have been deceived and lied to long enough. Our children have paid and are continuing to pay the ultimate price because of greed. The health care system has failed terribly. It is our responsibility to continue to bring about change.
Please continue to follow Alex on his journey toward better health. Allow us to be a part of your lives. Our strength will continue to come from everyone and anyone who would like to continue with us. Alex will hopefully get the medical testing he needs but was denied until now. So much needs to happen in order for us ensure his recovery and I still need so much help!  Please continue to follow my team of helpers for updates and fundraising efforts.  I cannot tell you how much I appreciate and value every single one of you who have gotten us to this place.  Thank God for the internet and facebook!  
I could not have done this without the help of Mark Hellner of Center for Disability & Elder Law and Agatha, Alex's godmother and Michael my friend and Alex's respite worker.
I am grateful for Age of Autism, its editors and especially Lisa Joyce Goes. I am also grateful to Autism is Medical (AIM) especially Jill Rubolino and Jeanna Reed and Dawn. None of this would have been possible without them. There are others who have asked not to be identified. They also are heroes in their quiet way. 
Lastly, and most importantly, I am proud of my son, Alex who has endured the unimaginable. I am proud to be his mother.
Love and Respect, Dorothy

UPDATE 3/22/2013 - DAY 33

UPDATE 3/21/2013 - DAY 32

From the Facebook Page

Day 32 - Alex Spourdalakis is still hospitalized and we are all awaiting information and praying. "March Madness" has a different meaning to the autism community this month. We've been watching Alex's case, advocating on his behalf but feeling helpless. We've been advise of numerous studies about possible links to autism from elderly grandfathers to mothers who are abused while the CDC has announced that 1 in 50 children now have autism. As we see President Obama making his picks for who may triumph in the national basketball tournament the nation is focusing on, we as parents are pulling our hair out and wondering why.....why....aren't more people concerned about the crisis transpiring for individuals like Alex, our children, and our families?
Why? "March Madness"? Yes perhaps, but I'm not mad, I'm frustrated. Just as our children with autism are when their needs are not met and their challenges not understood. Can you imagine if autism had the attention this national tournament had of the mainstream media and the public? If as many people cared about Alex's situation as their picks in the brackets? Am I the only one that sees something wrong with this picture?
We need to effect change as a community and do so now so people will care and will listen. Lets all create a new meaning to "March Madness" and get our community to march together to effect systems change and work toward solutions before we are out of hair to pull out. Action.....not reaction!

Lisa Joyce Goes
NEWS ABOUT ALEX! But, I'm gonna let Dorothy tell it :) On Saturday. I KNOOOOOOOOOOOOOOOOOOOOOW. 

But, what she says...goes. We all got into this mess in the first place because we quit listening to ourselves. She's the mama, and she knows ♥ 

Just going to say...when we come together to help each other, when people truly listen...when we open our eyes to reality...like what is happening in front of our EYES RIGHT NOW...when we stop denying and start working on the problem together?!?!? It's like...it's like...


REVOLUTION! ♥ ♥ ♥ ♥ ♥ ♥ ♥

It's happening.


Know that each and every single one of you ARE MAKING THE BIGGEST IMPACT ON THIS BOY'S LIFE. Everyone who forwarded his story, created a page. started a petition, called the hospital, filed a complaint, told an unaffected person his story...

PLEASE STAY TUNED, We will still need your help!

UPDATE 3/20/2013 - DAY 31

If you haven't already signed the petition here it is! very simple!


Justice For Alex
I know you are very busy, but Please could I ask you to spare a moment of your time to view and sign this petition for Alex Spourdalakis a young man with autism who has been in hospital for 31 days with G.I problems without testing and correct treatment.
It only takes a moment of your time and could save a boys life!
Please can I ask others to SHARE this to your facebook walls for everyone to see. Thank you

UPDATE 3/19/2013 - DAY 30

This mom is true blue.

by What do you think about the treatment of Alex Spourdalakis (Notes) on Tuesday, March 19, 2013 at 11:15am

By Jenny VanFossen

I don't normally post things like this, and it's highly offensive, but you need to read it anyway. It's beyond time, 30 days in, that somebody got offended. If you get mad enough, maybe you'll do something. Thank you Jill Rubolino for saying the things I've wanted to say. I tend to try to the diplomatic route, in addition to watching the words I choose, but here it is. I know I've posted this for days on end, and if choose to delete me over it, then I'm sorry you feel that way. THIS CHILD MATTERS AND WILL NOT BE FORGOTTEN. PERIOD. I WILL NOT BE SILENT UNTIL HE AND HIS MOTHER AND OTHERS LIKE THEM ARE SAFE AND ABLE TO GET THE APPROPRIATE CARE THEY NEED AS HUMAN BEINGS.

Warning.This is highly offensive in both language and content. I have used as many swear words as I possibly could. It is poorly written, lacks appropriate sentence structure, grammar, and punctuation. You must read it.HE WILL NOT BE ERASEDThat concept, of her child’s existence being erased from this world, is what being separated from him means to this mom. Her son, being taken from her and locked in a psychiatric facility while he becomes sicker and sicker. That is the best our system has to offer?I am pukified. My new word. I feel like I could vomit at any moment and if I hear or read another line of bullshit, feel good, “resource” empty piece of shit some fucknut sends me, I will seriously lose my shit.Oh yes, it’s like that. This will definitely not be pretty…..or appropriate….or probably even legal. 

This whole shitstorm started four weeks ago. And I have done nothing but spend my days and nights trying to help this mother and this child navigate the evil suckhole that is our medical system. Let’s just review, shall we. Step one……YOU fucking called US. We weren’t trolling for someone to help, shit, there’s no shortage of needs in our own little group. So if you’re some big ass autism organization that somehow is so fucked up and twisted and so far away from your origin that you would actually have this thought cross your mind, I am sad for you. YOU…..big healthcare system who thinks they know everything…..called US. So don’t act like you don’t know…..because we know that you know that we know….ya know. Step two…..YOU fucked up. You fucked up in the beginning, and you’ve continued to fuck up ever since. And there’s no way in hell you will ever ever be able to cover that up. Period.

This isn’t the first go ‘round with this piece of shit hospital. This child was already shipped off to an out of state facility where he was subsequently sent to the nearest hospital only a few hours after he arrived because it was an inappropriate placement to begin with. And, little detail, he is sick. Here’s what we like to call ….”unsafe discharge”. From there, he made one more stop at the state mental hospital for a few hours before that state shipped him straight home. That’s an appropriate 36 hour day with no food for a child who is sick and has autism. Then when he arrived home, after absolutely no treatment, or sleep, or anything resembling basic human needs being met…..he became combative. Big mystery. Nancy nurse gets edgy when she doesn’t have her Starbucks but this child should be able to handle that clusterfuck, right? So, his mom does what any normal, caring parent would do to protect her child…..she brings him to the hospital. For help. Where he is kept in limbo, with all four limbs locked for thirteen consecutive days. In the emergency room…..not a patient room…..the emergency room. Where there is no door, just a curtain. They keep him locked in restraints, “just in case” because they can’t secure his safety without him being in a regular room where they can close the door. Ummm…..illegal. Yep, one of the many ILLEGAL things that have been done to this child. Is he calm? Can he come out of restraints? Possibly, but how we will know when he’s gonna flip out again? Let’s just keep him LOCKED in restraints because that’s easier for us. True story. My own ears. Can you spell d-e-p-o-s-i-t-i-o-n? Oh, don’t even play with me. Their own hospital won’t even admit him to a room and they look to transfer him to a larger hospital that has a PEDIATRICIAN and PEDIATRIC SPECIALISTS. After a valiant attempt by some doctors who have some integrity…..and some balls…..this child is then transferred back to the larger hospital that already screwed him over for a DIAGNOSTIC TEST. Why would they send him there?!?! They already screwed him over! Because EVERY HOSPITAL IN THE SURROUNDING AREA REFUSED HIM. Every last one. So they did the best they could. How does that happen? Is he a murderer? I know that can’t be right because I take care of prisoners all of the time. And big mystery, they are not on lock down. They have guards….sometimes two of them, and they complain about the food, and are on IV narcotics for their pain, and talk on the phone all day, and watch cable…….in a regular room…..with their own bathroom and regular bed. Hmmmmm. Must just be my incredible lack of knowledge in this area. I must be missing something. So he gets to this hospital where he is admitted to an adult floor with an adult doctor who orders a consult for a GI doctor so he can get the testing. That was eighteen days ago. No testing has been done. He is getting sicker and sicker and they continue to hold steady, that AUTISM is a psychological problem and somehow negates all the other physical symptoms this child is having. In addition, the countless papers, research and references we personally supplied to them clearly outlines that aggression, self-injurious behaviors, and generally all other behavioral symptoms can and do lead only one direction………….pain. More specifically…….abdominal pain. Ignore the constipation, nausea, vomiting, distension, rashes, posturing, etc. Ignore what the AAP says. Here’s where we insert words like “standard of care” and “reasonable and prudent”. Big daddy GI department head CANCELS THE PROCEDURE ALREADY ORDERED and seals this child’s fate. No treatment for you, you are not worthy. I am certainly not gonna scope you and find your severe bowel disease so we can now use terms like “failure to diagnose” and “failure to treat”. Whatever. You’re old and outdated and hanging on to some good ‘ol boys white upper middle class bullshit that is long gone. You’re a dinosaur….get out before you kill someone’s kid. But then, things get reeeeaaaaalllly weird. We have morbidly obese nurse in charge using her wealth of knowledge in health care, as evidenced by the special care she takes of her own body, deciding what’s of value for this child. JCAHO regulations for patients in restraints….oh…she’ll get to them when she’s good and ready, right after her second lunch. I mean it’s obvious this kid is just crazy and this is a “problem mom”. They can wait. Rash after we feed him food he’s allergic to, no….it’s not that….it’s the bed. Where did you go to medical school? One of those island schools everyone goes to when they flunk out in the U.S? Okay, so now all kinds of crazy going on. All they while, a child……A CHILD….lays sick in a bed. Nurses act like judge and jury. Staff is abusive to patient and mom. Does anyone think to call someone who knows about autism? No? Where’s that 35 plus years of nursing experience? Hard to think after that carb load. How about sensory? How about a pediatrician….okay…we’ll get one on consult. How about checking labs. No? How about a dietician? We’ll feed him only protein, because we “don’t know what else to do”. Should we follow that then…with some labs? Nah…he’ll be okay, well with this autism and such. So here we are. Let’s LIE to the mother and say we’re meeting about insurance and then ask her to sign a release of medical records so “we can talk to your primary pediatrician about medications” and slip her a form that states she will do whatever the hospital says or they will take her custody rights away. Fuck you. Who are you? Who do you think you are? Hundreds of people calling. Reports being filed, etc., etc. Details beyond details. Long, lengthy letters with detailed pertinent information, pleading for help. Surely you can help this child. I will get him there. We will pay for it. We have set up aftercare resources. Door to door service. Just call. Tell them how important it is. Then I have this. Explain to me this story. Tell me all about the mom. Excuse me?! I was unaware of the rule that if you’re not perfect or perceived to be not perfect that it’s okay that YOUR CHILD IS ABUSED AND NEGLECTED BY A MEDICAL INSTITUTION. Let me see….do you think I can find a smidgeon of tarnish in any of these helpful people’s lives? Jeez…..I hope they are perfect or their child might be subject to four point restraints, severe abdominal pain, and abuse. WTF??????? I’m sorry, but last time I checked the mom could be smoking a crack pipe, turning tricks in the hallway and it wouldn’t make a DAMN BIT OF DIFFERENCE in how the child….the patient….should be treated. And, btw…..shut your face. Useless. Wasted time telling stories, stroking someone’s skewed ego, attempting to get help. In the end…..nothing. Disgrace that you’re in the same community. Don’t ever fucking call me to you help you.Multiple doctors, hospitals….fully capable. full staff, full autism program, full pediatric specialties and subspecialties. I’ll bring him bed to bed……high acuity medical flight…anywhere in the country. Nothing. All these big names. Oh, I know allllll about this. But, I can’t help you. Well, this happens all over the place. It’s just a normal weekday, apparently for some. Hmmmm……if this is a normal weekday for you, newsflash….you’re not doing your job. No more. No more saying you’re the experts. I am so sick of the countless emails of generalized bullshit terms that are used to make yourself feel better while you look away and do nothing. VERY VERY SIMPLE. GET…..IT….DONE.

Three. Three people I called that helped in under 10 seconds, no questions, no justification, just “YES”. You know who you are ;) I will NEVER forget that.I’m not talking about the little guys. Oh, those mommas and pappas are out there every day, pushing, posting, filing, calling, notifying, praying, worrying, helping. No ma’am. I am talking about the big guns. The ones who say they have a network. They know best. Just as bad as the hospital he’s in. You are damn right I said it. And it’s true.Here we are. Multiple transfer attempts to another hospital failed. Multiple attempts by them to strong-arm this mother into sending her sick, sick child to a freestanding, out of state, psychiatric facility with no medical services, no medical doctor, separated from her. Erase him. NEVERYou have no idea who you are messing with. This mom is true blue. The real deal. You only wish you were that dedicated.WE WILL NEVER GO AWAYAnd whoever is asking about agenda, here’s your answer. Here’s my agenda. WakeCoffeeKids to schoolHELP THIS CHILD.

UPDATE 3/18/2013 - DAY 29

From Facebook:

Just want to note we are so grateful for everyone's concern. I would need two personal assistants to pile through all the questions I have received.

Again, please see the timeline that was thoughtfully compiled by one of Alex's supporters, Jan Stark, at the bottom Dan's article as to why this is happening.

Also, please only PM me with tangible help. Attorney information or concrete media leads.


Please continue to support Dorothy and Alex with your intentions. He is a teenager, likes Brittney Spears and the backstreet boys. Mom wanted lotion for him, but must be corn, soy, dye, gluten, petroleum free (tough!). Mom has been there now 29 days. She was in need of some nice, clean socks when last we visited. You can send cards/gifts to the following address:

Dorothy and Alex Spourdalakis
c/o Loyola University Health System
2160 S. First Ave.
Rm 2343
Maywood, IL 60153

From AGE of AUTISM:  

Weekly Wrap: Alex and His Mom, Autism and Suicide, and Psychiatry's Hysteria Hangover

AofA Red Logo Ayumi YamadaBy Dan Olmsted
The drama now playing out at Loyola hospital in Chicago, as detailed in Contributing Editor Lisa Goes' superb reporting for Age of Autism,  is a stark case in point of what so many autism families face -- and so many more will -- as this epidemic unfolds. Uncomprehending doctors, a community not yet organized to intervene effectively, profoundly disabled young men no longer suited for cutesy ad campaigns, a media scared away by their reluctance to challenge medical authorities ... all can be seen in this sad saga.

But another part of the story is as old as autism itself: blaming mom.

The fact the hospital seems to be treating her as trouble is par for the course. But I've been quite surprised and a little disappointed by the feedback in our community that there is something wrong with this picture, namely, the mom. Why is she letting Alex languish with no treatment? Why hasn't she tried biomed, if she hasn't? Who is she taking advice from, and if it's not the right advice, why doesn't she get better advice? Why is she going public when maybe a more discrete and decorous handling of the matter might have been better for Alex? (An answer from a fellow AOA  editor: "That's probably right about the bulk of the situations from a practical perspective. But this crap goes on all the time. And sometimes we need to put a spotlight on it.")

All this reminds me of a sarcastic comment my father, a Roosevelt Democrat, made to lampoon criticism of the poor by the privileged: "If they don't like living in the ghetto, why don't they just move?" I'm half expecting someone to tell me that, Psssstttt,  the mom was turned down for the Junior League because, well, she's just not our kind of girl, don't you know?

I feel a little like Hillary Clinton testifying to Congress, waving her arms in exasperation and saying (about Benghazi): "What difference at this point does it make?" The evidence, visual, eyewitness, documentary, is overwhelming that this child's medical needs are not being properly addressed. What more at this point do we need?  READ MORE

UPDATE 3/17/2013 - DAY 28

Follow this link to CNN's website where you can vote for CNN to cover the story of ALEX SPOURDALAKIS 

On Facebook today : 

Alex needs 10 of his supporters to step up to make contact tomorrow morning with the... Can I get your commitment?
Contact the Chicago Archdiocese about what the Catholic Hospital is doing to ALEX. Call Monday Morning. Catholic Information Line: 312-534-8204
This is a dedicated line that allows callers to leave a question about the Catholic Church or the Catholic faith, or about an agency, department or event in the Archdiocese of Chicago. Messages are removed at least once a day during regular work hours and calls are returned in a reasonable amount of time. This line is NOT answered on weekends and holidays.

ATTENTION ALEX SPOURDALAKIS SUPPORTERS: we will be discussing him today on this show. PLEASE CALL IN....

Today, Sunday, March 17, 2013, on The Vaccine Myth: An Issue of Trust...

The guest is Liam Scheff, investigative journalist and researcher. Liam has focused on, among many other critical issues, the medical hoaxes used to direct parents into dangerous vaccine programs, and on the testable, effective treatments that are being suppressed by greedy drug companies. He deals, in other words, as do we: in issues of trust.

The issue of trust is a convolution: we trust the allopaths at Loyola University Medical Center in Chicago to continue their torturous, medieval treatment of 14-year old Alex Spourdalakis, an autistic boy confined in a hospital room, only recently literally removed from shackles, with no thought to treatment of the terrible gastrointestinal problems he suffers, so typical of autism cases, and so treatable; and their draconian threat to the boy's mom to agree to psychotropics and other pharmaceuticals for her son or lose custody of her child.

We will be taking calls at 512-646-1984.

The show airs from 2-4pm, CDT, and can be heard live at:


The archives of the show can be accessed at:


UPDATE 3/16/2013 - DAY 27
Latest Update from the Facebook page https://www.facebook.com/SaveAlexSpourdalakis
  • Day 27 - Please Help Alex. We keep thinking what we would do if we were being held in a medical facility for 27 days, in pain, forcibly restrained and medicated, being kept from an appropriate diet and medical care. We cannot imagine what it is like for Alex Spourdalakis who is fourteen, very ill, unable to speak, living with autism, and now traumatized by this treatment he is currently being subjected to by Loyola Medical Center. His mother Dorothy is unable to sleep or properly care for herself fearing that if she leaves her son’s side, something terrible will transpire. Twenty seven days now. Twenty seven days too of seeing a community not really stepping up to support this family as needed. Lots of arm chair quarterbacking going on, but not much support. Why? Perhaps because the majority of people in the U.S. would be put out if they didn’t have a phone to access for an hour, couldn’t answer their tweets or perhaps didn’t know what color a celebrity chose to wear to an awards ceremony.

    Is this a true gauge of our community, our society? APATHY not EMPATHY? Please also don’t think we don’t know what others are going through because we’ve most likely been there as well. Our son at one time had severe autism and was very close to the situation like Alex is experiencing.

    We would urge you to please go to this iReport on CNN and read about this case. If ask that you use the petition link to sign the petition. Additionally please click on the green button to advise CNN this is a story that has to be covered because Alex is now in day 27 of this lack of appropriate medical treatment in a hospital, not a psychiatric facility. He has autism, I/DD, but no diagnosed mental health disorder. There are many individuals like Alex across the country, many individuals like Alex in our state. Carolyn’s brother was and in a medical facility in MI when he died from a restraint related death in 1999. It is important that you know that too because we do not want our son or another person dying like he did. Unfortunately since then many have, but we’ve been able to stop others from doing so or change policies to prevent it.

    Please take an interest in this story because if you are reading this it could very well be your child one day and this could be happening to you. Hopefully it will not because there are many individuals now working to create a system where this type of thing will not happen to others and result in medical and/or psychological harm or death.

    There will be updates on the Alex Spourdalakis’s case daily because this needs to be done. We will be sharing this because we think it is imperative to do so. If you ignore Alex’s fate, chose to do nothing to assist, that is your choice, but please know you will not then be a part of the solution to ensure he obtains assistance, but also not part of a solution to make sure this does not happen again.

    Many across the country are working to assist Alex and his family, the vast majority volunteers trying to work to save Alex’s life. Please help if even to send this information to local papers, legislators, media outlets, even the President. Yes we are even sending pleas to the White House.

    We cannot imagine why anyone would not want to assist this child.

    Thank you,

    Andrew and Carolyn Gammicchia

    Day 27: Alex is still without appropriate medical care and supports to assist his family.

    This ireport was created to share this story globally and also request that CNN investigative and cover this case. Please click on the green button below the story to advise CNN this story needs to be covered:


    Facebook page created to assist with coordinating support efforts:

    March 15th piece by a very talented writer and mother of a son with ASD for patheos.com.

    “Yes, Autism is also Medical – The Story You Need to Read of Alex Spourdalakis”


    March 16th piece by Dan Olmstead of AoA.

    “Weekly Wrap: Alex and His Mom, Autism and Suicide, and Psychiatry's Hysteria Hangover”

UPDATE 3/15/2013 - DAY 26
26 days in the hospital with no Medical Intervention

Updated timeline:

A new Facebook page has been set up for Alex - please visit and click Like and Share the page on your wall https://www.facebook.com/SaveAlexSpourdalakis

Alex Spourdalakis age 14

Petitions are going up to save Alex, those in Chicago closest to Dorothy and Alex are begging for the rest of us in the Autism community to Share Tweet, and Talk about this story. Begging us to Call, E-mail and write letters to Loyola and the Office of Civil Rights. This child could be your son, your brother, your father. He is every Autistic boy and he needs our help. Do something. Scroll down to read all the way back to day 19 when this story first broke. There are links to other blog posts, news stories, a sample letter, addresses and phone numbers. I am doing what I can to keep you informed, do your part and ACT.

Thank you.


Change dot org


CNN iReport

UPDATE 3 /14/2013 - DAY 25
Please keep up the letter writing, e-mailing, and tweeting, and sharing. In the meantime if you'd like to send a note of encouragement to Dorothy and Alex here is an address.

Alex Spourdalakis
c/cLoyola University Health System
Rm 2343
2160 S. First Ave.
Maywood, IL 60153

UPDATE 3/13/2013 - DAY 24

Lisa Joyce Goes shared Karyn Audy Borden's status.
On Facebook around 4pm CST on 3/12/2013
Pretty much everything ya need to know. Night
A statement from My Home Girls:

"With the unfolding events surrounding the lack of medical care for Alex Spourdalakis and violation of his patient rights, civil rights and basic human rights, we stand united and committed. The travesty that is the total medical neglect and abuse of this child by the medical establishment will be the last of its kind. We are but a small part of an enormous community of autism parents who desire our children to receive the same medical treatment as every other patient. We are sickened by the lack of anything that resembles adequate or appropriate medical care. This display of gross negligence is endangering this child’s life. We will not tolerate a child in our community suffering at the hands of the very people who are supposed to heal them. We have a lifelong commitment to these children and will exhaust every resource to ensure their safety. We will never go away."
Autism Is Medical
Jeanna Reed, LPN
Jill Rubolino, RN
Amanda Lochbaum BEd

Here is an example you can use to author your own complaint letter:

Sample Complaint letter: 

Dear Sirs,
I am filing this formal complaint on behalf of Alex Spourdalakis, a 14 year old nonverbal autistic child that is currently inpatient at Loyola Medical Center in room 2243.
He has severe autism and has been kept there, on an adult floor, since his transfer from Gottlieb Hospital on 2/28/2013. He remained in locked restraints to all four of his limbs for in excess of 20 consecutive days, including the days he previously spent at Gottlieb held in an ER bay for approximately 14 of those days, unable to be admitted into a room. His basic human needs have not been met. He has not had any accommodations for his disability. He has not had anyone attempt to provide him the ability to communicate. He has not been held in the least restrictive environment and the frequent assessments for his need to be restrained, as required by regulatory agencies and hospital policy, have not been performed. Not one professional that specializes in autism has examined him. He was kept in locked restraints without any written plan to work towards release. He was denied medical care and intervention by this facility that he was specifically transferred there to receive. His mother has been denied a list of physicians in charge of his care. His mother has been denied a list of medications that are ordered for her child. His mother does not have access to a phone inside the patient room in order for her to access resources. He has not received any medical services other that psychiatric medications, restraint and seclusion since he arrived. He has had a delay in treatment waiting 5 days for an ordered consultative physician to see him and one additional day until he was examined by a specialist for his gastrointestinal problems, the very reason he was transferred to this facility. He has been held in restraints while the physicians have ordered and cancelled this procedure. He is not being provided appropriate foods as he has many food allergies. He has not had access to any specialized evaluations or services from any professionals such as occupational health, speech therapy, developmental pediatrician or behavioral specialist who might be able to facility addressing his disability. He is being denied medical care and accommodations for his disability of autism and his mother is purposefully being separated from him and threatened by hospital staff. His pain has not been assessed or treated. None of the many standardized assessment tools for nonverbal patients have been utilized and his mother was told they staff is “unable” to determine if he is having pain. He has not been medicated for pain. The following patient rights, as outlined by JCAHO, have been violated:
You have the right to be informed about the care you will receive.
You have the right to get important information about your care in your preferred language.
You have the right to get information in a manner that meets your needs, if you have vision,
speech or hearing, or mental impairments.
You have the right to make decisions about your care.
You have the right to refuse care.
You have the right to know the names of the caregivers who treat you.
You have the right to safe care.
You have a right to have your pain addressed
You have the right to care that is free from discrimination because of physical or mental
You have the right to get a list of all your current medications.
You have the right to be listened to.
You have the right to be treated with courtesy and respect.

His basic rights to medical care and accommodations for his disability of autism have not been provided.

Please investigate why this child with a disability is being denied access to medical care.

Thank you,

Your Name

Email this to OCRComplaint@hhs.gov

Or mail it

Region V - Chicago (Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin)
Celeste Davis, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
233 N. Michigan Ave., Suite 240
Chicago, IL 60601
Voice Phone (800) 368-1019
FAX (312) 886-1807
TDD (800) 537-7697

Alex Spourdalakis

Loyola University Medical Center
2160 S. First Ave.
Maywood, IL 60153

(708) 216-9000

UPDATE 3/12/2013 - DAY 23

Paula Hindel is now at her desk.. Call her and tell her. 708-216-3802 Alex's medical issues are now being ignored. He will be sent to a psyche hospital. they have failed to treat this child and he may die. So, I am asking you to call her to ask her to acknowledge what she has done to this child. She will tell you she cannot answer because of HIPPA. You tell her, you are asking her MOTHER TO MOTHER IF SHE KNOWS WHAT SHE HAS DONE TO THIS CHILD. DO NOT STOP CALLING UNTIL SHE BREAKS

UPDATE 3/11/2013 - DAY 22
Day 22

Day 22 of Autism Agony at Loyola U Medical Center - AGE OF AUTISM'via Blog this'


ACT NOW. PLEASE WE NEED YOU MORE THAN EVER. CALL JACHO. PLEASE!!!! WE NEED TO PUT THE PRESSURE ON! FORWARD FORWARD FORWARDhttp://www.ageofautism.com/2013/03/day-22-autism-agony-at-loyola-u-medical-center-.html

'Thinking Mom' tells Loyola Univ. Medical Center that autism is not "a mystery"

Alex Spourdalakis has now spent 22 days at Loyola with debilitating GI pain. The autism community is horrified and galvanized to action by the lack of care he has received and has been asked by the Age of Autism Team to please contact customer service for the Joint Commission, a governing body that accredits medical institutionsat: 630-792-5800. In a post dated today, the Age of Autism team wrote, "Politely tell them you are calling about the lack of medical care for Alex Spourdalakis in the Loyola Healthcare system. They need to receive as many calls as Loyola did 3 days ago. They need to know what is happening behind the doors of the institutions they are accrediting."
They need to know that a teenager's life may be at risk because of medical negligence occurring at Loyola University Medical Center. A child developing typically would have already had tests of every sort to determine what is wrong.

UPDATE 3/10/2013  - DAY 21

Day 21

From Lisa Joyce Goes

Ask yourselves why you are getting no answers! ASK YOURSELVES WHY YOUR PROFESSORS HAVE A GAG ORDER. Do not continue to talk among yourselves about "the untouchables". They are untouchable because we put them on a pedestal. THEY HAVE THE POWER BECAUSE WE GIVE IT TO THEM.



3/9/2013 UPDATE-  DAY 20
Here is the story that ran on Fox 32 in Chicago. I want to say this - Thank you Fox for running this story- I can't wait to read the follow up! This horror story could so easily happen to anyone of us, our children, or siblings, parents or neighbors. The only question I have is WHY hasn't the mom had the boy transferred,is she getting assistance with this now? I imagine it is likely a matter of money- I know if it were me, I would be trapped. That is why this story has to be told, so that enough people can step up and help. Can he be airlifted to Austin, TX where there is a GI center that has a proven track record with treatment of this nature??


Chicago News and Weather | FOX 32 News

CHICAGO (FOX 32 News) -
FIRST ON FOX: Claims of neglect and mistreatment by one mother Friday night who says a local hospital restrained her son and left him to suffer, all because he is special needs.
The hospital is Loyola University Medical Center in Maywood.
The patient is a 14-year-old autistic boy whose mother claims his needs are not being heard.
"They're treating the behaviors with meds, but they don't know what causes the behaviors, they refuse to give him the medical care he needs," says Dorothy Spourdalakis, the boys mother.
Spourdalakis is exhausted and frustrated with how her special needs son Alex has been treated at Loyola University Medical Center.
"He has severe autism and he's non-verbal. They also have him labeled as cognitively impaired," Spourdalakis said.
He's being restrained as his mother says - he acts aggressively during what she says are bouts of vomiting and diarrhea.
"He's been in restraints for so many days that when they take him out of restraints, he actually wants to be put back. Because he's been conditioned to think that it's ok," Spourdalakis said.
In a statement, Loyola says due to HIPAA Privacy Rules, they cannot comment on Alex without written consent from his parent or guardian but said their "highest priorities are providing for the clinical needs of our patients and ensuring the safety of our patients and staff."
His mother says all she wants is for her son to have tests done to find out why he's having gastrointestinal problems. Instead she says he's being provided with medications to only keep him calm.
"I was told and I quote, 'we have to heal the mind first and then the mind is going to heal the body,'" Spourdalakis said. "Nobody will do the necessary tests to find out what's really wrong."

Read more: http://www.myfoxchicago.com/story/21560263/woman-claims-hospital-restrained-autistic-son-left-him-to-suffer#ixzz2N3J4UUbS

3/8/2013 UPDATE-  DAY 19
Day 19: Chicago Hospital Locks Down Autistic Patient - AGE OF AUTISM:

'via Blog this'


This is happening as we speak! Please share, call, e-mail and talk about this make sure people know! This could so easily happen to my Bear, to your son, your child, your parent, your sibling, your neighbor...

The National Autism Association has said:
This is heartbreaking - and sadly, not uncommon. Many of our kids with autism suffer from serious and painful co-morbid medical conditions which can contribute to "behaviors". Imagine not being able to tell someone you're in pain. Imagine doctors not even physically examining a patient who is clearly suffering, saying that it's just part of "autism" and prescribing anti-psychotics. It happens every day - and it has to stop!

Read about Alex, then download this new paper published by Treating Autism and Autism Treatment Trust. Print it out and give it to your doctors. Our kids deserve proper medical care!



Unknown said...

that's why this opened tired of non sense with public schools and facility's contact Autism Smiles online school for autism if you have a child with slow language delay your child can gain speech by using the program it is a online based offered in your area accepts 2 years old up call 540-975-1917 or visit http://autismsmilesllc.org/

Kimberly said...

This system is so screwed up. Why can't they consider that the body may need to be healed 1st in order to heal the mind? Someone once said that your gut is your 2nd brain but they seem to not consider that and carry on about their ways.