A couple weeks ago a friend of mine with a recovered child gave me a call. “There’s this mom, in a hospital, and you need to tell her story.”
“Sure, I can talk to her.” I replied, thinking a half-hour for the interview, a couple hours to write up the piece, done in time to pick up the kids from school. I pulled my car over and spoke for the first time to the now-famous, Dorothy Spourdalakis, mom to Alex Spourdalakis who, as of this writing, remains hospitalized in one of Chicago’s top-rated medical facilities, untested and untreated for his symptoms of gastrointestinal distress.
Of course, at that time I had no idea this woman and her son were about to change my life forever. For the few of you not yet aware of Dorothy, you can read her son’s story here.
Many in our community have begun to refer to her as the Rosa Parks of Autism. I would agree with that moniker wholeheartedly. Like Rosa, when this ordeal began Dorothy was just plain tired of the injustice. While Rosa held onto her deserved seat as an American citizen and human being, Dorothy, with her steadfast insistence, is holding the entire medical industry accountable for the image they project. They claim to help people get better. Children with labels like autism and non-verbal, deserve appropriate medical care, the same care given to children who can speak and are considered neurotypical. It just doesn’t seem like so much to ask, does it?
Rosa, tired of setting aside her principles, decided without heroism or revolution in mind,
that she’d simply had enough. Like her, Dorothy’s soul has accumulated too much injustice for her earthly body to bear and without the conscious prompting or preparation that one
would think defines socio-political movements of great power, she simply took a stand and demanded appropriate medical care for her son who happens to have autism.
It’s exhausting living in a lie, even if that lie is propagandized as the truth. Both women refused to do it anymore.
Through Dorothy’s selflessness, I am learning that is what it takes. One person with the presence of mind to act as the conduit. The embodiment of change, the sort of change that influences legislation and breaks down walls comes from one person’s exhaustion, sacrifice, and love for another.
I have heard all manner of rumors floating around about Dorothy. Starbucks moms with
their rheumy-cheeked toddlers, enjoying a leisurely chat with friends, “What is wrong with her? I would just take him right out of there. This is America. They can’t force her to stay. She must be crazy. There’s more to the story. The whole thing is fishy.” And off they go to Gymboree before a quick stop at Kohl’s and lunch at McDonalds.
Guess what peanut? She’s fighting for your kids too! How about a thank you? I think to myself. I have to think it instead of saying it because I have been screaming about this for so long and to so many media representatives I’ve actually lost my voice. Hearing conversations like this seems surreal now. This strange disconnected banter of the unaffected does not mesh well with the very real images of Alex in my mind.
“Don’t spit, Alex! Don’t hit, Alex!” Were the first words spoken to Alex by the hospital’s care team during my visit with him. Appalled at the complete lack of the staff’s understanding of how to handle an aggressive child with autism, an audible gasp escaped my lips. Alex, who had not yet noticed me (my friend and I came into the room while he slept), turned and darted toward me. He sprawled out on the bed in front of me and grabbed a spoon off the table beside my head. Dorothy gently removed it from his hands and redirected his attention to his iPad. Alex glanced at it, returned to his bed, curled into a ball and looked directly into my eyes.
This is what was communicated human to human, in that split second: 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.”
That’s that. I always thought the neat thing about mysteries was the excitement of discovering the truth, ferreting out the bad guy or uncovering a hidden and unexpected motive or agenda. I especially like multi-layered mysteries. Character upon character, multiple plot lines. The kind with proprioceptive, nervous system, vestibular, neurological and immune systems overlapping. Cytokines, ketones, blood cells and histamine all playing their various roles out of proportion.
You’d think every important medical mind in the world would want nothing more than to get to the bottom of this pandemic that is robbing our beautiful children of their voices and their health. Sadly, the only modern day physicians who apply this sort of medical curiosity to children like Alex are fictitious.
The moms and physicians whose own children became ill had to figure it out on their own. Because their research points to causation, it is mocked, discredited, debunked and in many cases, erased from medical history before it has a chance to influences the masses. It is much better to present to the world the notion that autism is simply a complex mystery. Over and over and over again.
While this is what we hear in the media, the real perception of the scientific/medical/pharmaceutical elite is that no medical mystery exists. Autism is just bad behavior that must be managed with psychiatric meds because of “the different wiring.” They do not see or investigate the world behind Alex’s eyes. They do not see the vast undiscovered worlds within the now 1 in 50 children affected by medical illness, misdiagnosed and misunderstood as autism.
Yet, in this great chasm, this strange disconnect between the reality of the situation (a sick child labeled mentally ill), and the autism-is-a-magical-mystery message continually spewed by those with a vested interest in the promulgation of this false notion, lies the truth.
A mother’s undying devotion and selfless love for her child.
I had to force myself away from this issue to grocery shop for my family today. At check out a picture of Oprah in a striking pink linen shirt and purple taffeta skirt adorned the cover of her magazine. Confidence! is what you will learn about in this month’s issue of “O.” The whole cover, bursting in spring splendor, bright green, fuschia and violet just seemed utterly ridiculous given the reality of what is happening to the children of our country right now. Pages and pages of lush advertising, beautiful pictures, articles with life coaches and specialists in success and prosperity will teach you how to build confidence this spring. Pfffft.
“Go out into the world, live your life. Respond to adversity with dignity. There, you built yourself some confidence. Now go use it to help other people. Bonus, you have a purpose now, too. Love and defend your children. This makes you whole, makes your life worth living. Listen to me. Got it?” I imagined Dorothy wagging a finger at Oprah in this lush scene. Oprah in that massive skirt, and Dorothy in her black t-shirt, red fleece and jeans. I had my first good laugh in days.
I leave you with this. How much longer before our children are in Alex’s restraints? How much longer will the autism community tolerate mistreatment or no treatment at all? And how much longer will we allow the institutions that made our children sick to deny the damage that has been done?
Dorothy Spourdalakis represents every single mother of a child who has been labeled with autism. She is a mother who has had enough and is peacefully forcing change. I am honored to stand behind her. Please stand with us.
Respectfully,
~ The Rev
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Very well said, but I have a problem with the hope of getting help from a messed up, torn up, no good system of health care. She can stand all day long, they are only going to pump more drugs into the poor boy and they DO NOT KNOW what to do which is why they are doing NOTHING. If you go to http://www.whale.to and look up what is really going on in health care, you would run from AMA hospitals to save your life. Change is NOT going to come from within, the whole thing is run by drug companies and it is evil as evil gets. Change must come from parents by NOT GIVING THESE DRUG PUSHERS another dime. We have doctors who can tell us HOW to heal our children if we can just get past the fear and terror of the evil fear mongering of this evil death care system. This lady can call Dr. Carley and learn the truth. Her phone number is on her web site http://www.DrCarley.com She can learn more about WHY her son is so sick and then learn how to reverse the problem. Like detox is the reverse of putting toxins into the body. So simple, yet the QUACKS in the AMA say detox is a myth. THEY ARE USELESS DRUG PUSHERS who lie to you. People actually believe they will die if they don’t take the toxic potions. Just like voodoo curses. So the idea is great, but you have to know your enemy in order to defeat them. She can’t get blood out of a turnip any more than she can get help from these quacks in the AMA.
Thank you for such beautiful article and for putting so much love into it.
“How much longer before our children are in Alex’s restraints? How much longer will the autism community tolerate mistreatment or no treatment at all? And how much longer will we allow the institutions that made our children sick to deny the damage that has been done?”
We are all Dorothy and what’s happening to Alex today, can and will happen to our children tomorrow, if we don’t do something about it!
Bravo and thank you!
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I can feel every emotion in this article. The anger, the disgust, the shame, the sadness and so on. However, today was a great day for me and my son. Now 16, he is awesome, awesome, awesome. Those days were so long ago and often a blur. Not because I don’t remember but because I don’t want to. The pain is truly unbearable to see your child and all children suffer, to see confused, scared parents and incompetent doctors and teachers.
I know this pain. BUT I also know the triumph of miracles, when you don’t give up. Blessings. love and tons of healing sent to all of you. This is not just about hour kids, it is about families and us as a culture. The strong, smart ones need to stick together and THANK YOU for Dave Matthews..My life wouldn’t be the same without his music,.
Thank you for putting so much heart and soul into your words. I felt every bit of it. And thank you for reporting the truth. While my son only has apraxia, and not autism, I know what it feels like to have a child that cannot communicate. He has multiple food intolerances & allergies and it makes me see what would happen to him if he ever has to go into a traditional medical facility. Heck, I can’t even imagine taking him back into a regular pediatrician’s office again for a simple illness, much less a hospital for something more serious. It scares me to death & it makes me wonder how long it will take for things to be changed. I am in awe at this mother’s courage & ability to persevere after so many days & obviously heartbroken for the child who has to endure such pain. Hopefully something will be done soon to help him.
Allopathy be damned for allowing Alex to be treated in such medieval fashion. This is a very, very sad state of affairs.
Unfortunately, I am ahsamed to say, many years ago, when my (now 21) year old son was a young boy, he had several trips to the hospital, and would always be placed in 4 point leather restraints and given haldol(a chemical restraint). I would cry, even step out of the room to cry, as it was always too much to bear to watch. This was before the internet came into play, before I had any idea I was not alone. Doctors were completely baffled by the autism symptoms back in the early 1990′s. We didnt even have a diagnosis back then. I was always told, if he had speech he could not be autistic! That was how much the doctors knew about autism back in the early 1990′s! I cringe when I hear that the reason autism is now 1:50, because back in the day, when no one knew what diagnosis to give my son, they had not ever seen autism. Now, I wonder how many autistic kids per day are those same doctors seeing? I went through this same sort of hell with the medical establishment some years back, with my son. I have spent almost every day of my life trying to make his life better and brighter. He now lives in an assisted apartment. He is starting a vocational training program next week. He has met a young lady who catches his eye. Life has gotten better for so many of us veteran Autism mom’s, but the world has a long way to go….long, long way to go. Thank you for writing this article, and thank you Dorthy for going public, because I have been reading and following, and my heart breaking for your son, knowing I have been in your shoes. I have tears for both of you. Hugs.
I’ll be downtown Chicago on Monday. What can I do, what can I bring to Alex or Dorothy to make their time a little less horrific for a little bit. anything. I’m at her disposal on that day. Someone please contact me at [email protected] Wendy
great piece. so gratified to be able to help share your reporting on this.
I’ll be downtown Monday. Please ask Dorothy what I can do for her, bring her, anything.
Wendy, another mother.
I forwarded this to LJ. Thank you for kind offer
I’ve said it before, and I’ll say it again. Everyone should be so lucky to have an LJ Goes behind them. I am so proud to call you friend.
Our family prays for yours Dorothy, and all of the families that are trying to survive this.
I think the biggest reason why other moms want to place some sort of blame on Dorothy is because they truly just are terrified to believe that one day this could happen to them. As long as they can blame the mom, “it won’t ever happen to me”. They are lying to themselves. I thank God for you, LJ, and for the people at Autism Is Medical, and for all the countless others who have been working diligently to help sweet Alex. I pray that if I am ever in a similar predicament one day, someone like you (not to mention our community) will go out on a limb to help me and my son the same way. We all need each other so very much. xoxo
The future is not something I look at often because it frightens the Bejesus outta me. I have been following this with you from the beginning, praying and hoping for a miracle because as you said this could be my son as well. At 7 yrs old he is very aggressive and uncooperative when he’s in pain. On top of that he just doesn’t want to be touched by strangers. Period. My heart was so heavy as I was forced to confront the future yet again and mentally make plans not to take him to the hospital in 7 yrs. But what if? I shared Dorothy’s story and scolded people for not signing and doing all they could for Alex because in my mind Alex is LoRenzo he represents every child of ours and he fuckin matters! PERIOD. Thank you Dorothy for standing in such a big way and Lisa as always, you blow me away with your eloquence. <3
My heart breaks over and over and over again over what is happening to Alex and all of our beautiful children.
This piece has a great big ole “YES” on it!
Thank you so much for this!
I am so sorry for what has happened/is happening to Alex and his Mom. Dorothy IS his last line of defense. His only line of defense. She is heroic. And, you, and other Thinking Moms are heroic for informing and educating.
I would only add one thing to this, it is honestly not just folks like Alex, nonverbial and diagnosed Autistic who get treated like/similar to this.
This type of “medical” response would seem to be a (learned)(taught) response to being confronted with seemingly impossible (but true and accurate) medical situation, for which the medical persons do not have the knowledge/skill/interest to ferret out. I wonder if it is a “cover your ass” type of response – let’s blame the patient so no one can claim “medical” care is lacking, or what… But it does seem to occur (frequently) in neurotypical as well. Even with very articulate well spoken neurotypical.
I took a first aid course once…The Instructor said that many of us if we came upon a gory/blood/horrific accident would not have the background to cope well. We would undoubtedly be overcome by nausea, shaking, horror. We might be the first/only one there, upon scene to offer any First Aid. The victims could well be dependant upon one of us for survival.
The Instructor said, what we must do, is vomit, wipe ourselves off, get on with First Aid. I would guess Thinking Moms instinctively understood this… for they have moved way past “First Aid”…
Again, thank you, Thinking Moms, thank you Dorothy.
Once again you knocked it out of the park. And yes, the analogy with Rosa Parks just. did. it. Bravo for you and prayers for everyone going through this every day. Keep plugging. Stand strong. There are more of us behind you than the medical world of idiocy knows.
You two are women brought together to defend a child. This is a very moving post. Lisa and Dorothy, you two have confidence that comes not from hair and make-up and nails, but from speaking the truth and taking a stand for it. I admire your courage to stand for all of us and for our children. Thank you for being brave and for fighting for all our children as you let us pray for Alex and share his story.