REAL Autism Awareness: How Our Kids Get the Shaft

32 Flares Twitter 4 Facebook 13 Google+ 1 Pin It Share 14 StumbleUpon 0 32 Flares ×

I keep getting information on the so-called “autism awareness month,” but since I don’t support Autism Speaks, I refuse to light it up blue.

But that said, as the mom of a child with autism, and as a member of a community that already affects 1 in 88 children, and if trends keep consistent, may grow to a far larger portion of the American public, I feel it’s my duty to raise awareness – not of autism, but of how people and children with autism are treated.

And that answer is: Cruelly.  Unfairly.  Unjustly.

First, we had the backlash against the Newtown, CT shootings, when 20 children were murdered last December, and the perpetrator was given the label of being autistic.  No evidence supports that, and yet our children get this rap of being violent.

Our kids are equally saddled with this ridiculous notion that they have no emotions (just like, say, a sociopath).  Cultural opinions led me to worry about my daughter’s soul, which, I’m happy to say, is perfectly balanced, peaceful, spiritual, and on her way to becoming a woman of faith.  Another myth flies out the window, but instead of getting better, stereotypes, mishandling, miscommunication and sheer bone-headedness are still as much the rule as the exception.

sad boy

Someday, a child you know could go through this nightmare.

Today, we have the troubling case of Alex Spourdalakis.  After several months of suffering sleeplessness, bowel disorders, and GI distress, Dorothy Spourdalakis brought her son non-verbal son with autism, Alex, age 14, to the hospital in February.  He was physically aggressive – no doubt, because of his pain and frustration – and locked in restraints, naked and kept that way for 19 days.

19 DAYS.

Imagine being unable to communicate, and being in pure intestinal agony, and then chained, wrist and ankle, to a bed.  Can you?  Because I can’t.  I would probably scream my freaking head off.  Read the full story and check out the shocking photos here:

Day 19: Chicago Hospital Locks Down Autistic Patient

You would think after being that careless and stupid, the hospital would listen to Alex’s parents and try to get him some help for his agony.  The hospital has only gotten worse, refusing to investigate any internal issues that this boy may be suffering, God knows why.  Read this article to get to the heart of what Loyola is NOT doing for this suffering child:

The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center

His godmother’s words strike me the  most:

“But how do you know?  How do you know what is bothering Alex when you do not test? Why do we give him medication after medication without knowing?”

There we get to the heart of the matter.  ”Autism is behavioral. Period, end of story.”  No child with autism could ever possibly be suffering GI distress.  No amount of impossibility to potty train, constipation, diarrhea and accompanying rashes, smell, and odd coloring could indicate that autism (and the thousands? millions?) of parents whose kids with autism HAVE gut problems could possibly convince the amazingly brilliant and stunning brains behind Western medicine, but we can definitely introduce psychotropic drugs that have not been tested on growing minds!

This is what you need to be aware of regarding autism: that there is a growing body of uncorrupted science finding links between autoimmunity problem, imbalanced biochemistry, poor methylation, inflammation, and other medical and physical problems to autism.  That kids with autism do suffer silently.  That giving them drugs that “improve” does not cure the pain, it just numbs them to caring.

I thank God EVERY DAY AND NIGHT that Zoe is where she is at right now, that she is relatively happy, and that we are on a path to treat her that both Chris and I are comfortable with, and that I feel is God-led.  I pray EVERY DAY AND NIGHT for her health, her medical balance, and that she will never need a hospital.

If you want to do something, pray for this family, that their suffering and nightmare will end before any more damage comes to Alex, that his pain will relieved, his medical problems truly examined and properly treated, and that this story provide awareness for every one out there who is too lazy and disconnected to learn about autism and how it can affect them.

Because odds are too good that one day, it will.

Join the cause and TAKE ACTION to help this family!

SIGN THE CHANGE.ORG PETITION!

 

Image courtesy of Arvind Balaraman, / FreeDigitalPhotos.net 

32 Flares Twitter 4 Facebook 13 Google+ 1 Pin It Share 14 StumbleUpon 0 32 Flares ×

10 thoughts on “REAL Autism Awareness: How Our Kids Get the Shaft

  1. Melissa Long

    Great blog post! I don’t support Autism Speaks, either. Awareness should be more than “lighting it up blue” for one day, or even having an Autism Awareness month. I’m also enraged by the people who are saying Lanza’s supposed autism is to blame for Sandy Hook. I got so many emails from friends and family who were “concerned” that my son may end up like that. Even though my son is non verbal and seems fairly unaware of his surroundings, he is the gentlest, sweetest 10 year old boy you will meet. I’d say that 99% of the children (and even adults) I have encountered who have autism, are kind and loving.

    I didn’t know about Alex’s story. How incredibly sad! Thank you for posting this and making others aware.

    1. Gina B Post author

      Thanks Melissa. I’m so sorry that people are saying that to you, it’s just not right. Every person or child with autism is different!! You’re welcome, and blessings to you and your family!

  2. Debbie Stone

    Hi Gina,
    When I read Alex’s story on Gaia Health, I was so angry and saddened. I am the mother of a 10 year old boy with autism and am very much aware of the issues these children and their families face. My heart goes out to Dorothy, I couldn’t bear it, thinking about him brings tears to my eyes. I started a not-for-profit and our first project is The Om Holistic Center for Autism & Developmental Disorders. The center will be low-cost to free. I feel that mainstream medicine treats all these kids the same and felt frustrated that non-invasive holistic services could get costly. I wish I knew how to get in touch with Dorothy. We have someone here who would work for free with her using natural supplements to help Alex with his GI issues. She has done great work with my son who has GI issues. I will continue to contact news sources and keep this story on everyone’s mind. Thank you for posting!-Deb

      1. Debbie Stone

        Hey Gina,
        Signed it and forwarded it. We are at facebook.com/om.pop.earth
        I will contact Lisa! I read they were looking to put him in a pysch center??? Really for GI pain???? Unbelievable….

        1. Gina B Post author

          Yea, it makes no sense! It’s as if, if you can’t say “ouch,” you can’t be in pain.

          1. Debbie Stone

            Hi Gina,
            I got an email from Loyola (I emailed a complaint to them). The director of patient relations, Sharon Englert emailed me her telephone number to call. She explained to me that she couldn’t discuss Alex’s case but wanted to know my concerns. It was a very civil conversation and I believe I was able to get her to understand why we are all concerned. I also asked her to reach out to Alex’s mother and make some concessions to his treatment. After all he is 14 years old and non-verbal. I begged her to help him before its too late. Loyola can make this better and I asked her to see to it. Please call her at (708) 216-5142. I spoke very civil to her despite the rage I felt and I hope everyone else will too.

          2. Gina B Post author

            Thank you for sharing this! Kids are home early due to weather – I’ll try to make time in the next 2 days. I sincerely hope they were not just paying you lips service!! Do you mind if I post what you wrote for others?

  3. Debbie Stone

    No problem…you can post. She is the only person that responded to any of my complaints and I sent several to various places. I hope I reached her as a parent and not a representative. I really tried to make her see the human side of this…not just the controversy. I tried to reach out to Lisa Joyce Goes but I guess because my facebook page at om.pop.earth is up as a business…it limits what I can do. Please share this with her if you can and maybe she can contact me? Thanks! -Deb

  4. Debbie Stone

    Also, I saw on Lisa’s blog that Alex needed a special type of lotion (corn, gluten, soy, etc, free). I was able to talk to Jamie Lovern, the founder of LolaBlue and they have such a product…its new to their lineup and their sending it to Alex for free! YAY! Please post something about LolaBlue products to show our support. I love her generosity! Alex will be happy! Working on getting mom her socks.

Comments are closed.