Tired Moms, Ignored Worlds: My Time with Alex & His Mom

Alex is the autistic teen whose mother was coerced into signing over all authority to a hospital or lose custody. He is still untreated for his physical problem, extremely painful gastroenteritis. Doctors claim to help, but still they’ve done nothing. All they can say is, “He’s just wired differently. Autism is a mystery.”—But they demand total control.

by Lisa Joyce Goes

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 and 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.

Lisa Joyce Goes is a free-lance essayist, Contributing Editor for Age of Autism, and Co-Founder of The Thinking Moms’ Revolution.