Wednesday, January 15, 2014

Alex, the reality of having a child with autism and the reality of having a child, with autism that has siblings.

I am a lazy blogger, I do it when it fits my schedule or truthfully my mood, generally my bad mood.

So tonight I see the following post...

Mads: Mom. Why did Alex Spourdalakis die? 

(Cleaning kitchen, drop a bowl, stop in my tracks. Heart racing)

Me: What? 

Mads: Why did he die mom? When you had our class write letters to him in the hospital they wouldn't let us put our names on the cards. Why? 

Me: Honey, what happened to Alex is so complex. I just need you to know what is being said now, is not about Alex. Ms. Jeanna Reed and I got involved because we wanted the doctors that were caring for him to treat him for what was really making him sick. They thought his brain was broke, but his tummy was broke. Just like when we took Noah to see Dr. K and he started talking and going to the bathroom on his own. If we didn't take him to Dr. K, that would not have happened.

Mads: Why don't the doctors at the hospital Alex was at know? 

Me: Because, no one told them. They aren't allowed to see the research mom gets to see. And, if I didn't work really hard to find out what was wrong with Noah I wouldn't know either. But, I love Noah, we have help, and we are surrounded by people who love and support us who are really really smart and brave. Alex didn't have that. 

Mads: I just think it is really wrong he had to die, mom. 

Me: Me too. 

I rarely post about this. I have had to work incredibly hard to close this chapter in my life, yet the book keeps opening. I am no longer a working part of the team that will bring justice to this story. Not because I was not invited, but rather, because Noah's care requires too much for me to participate. If you are new to following me, you need to know the medical negligence that Alex endured is HAPPENING TO CHILDREN WITH AUTISM AND NEUROTYPICAL CHILDREN ACROSS THE COUNTRY. You need to know that Jill Rubolino and a handful of others will FORCE the change we need to see. With science, truth, and THE HEALTH OF OUR CHILDREN as the foundation for this profound shift in the way we view medicine. And, it will change not just medicine, but politics, parenting, and THE WORLD. If you leave this story with only the surface sentiment "I cannot believe she killed her child" then you REALLY REALLY missed the point. We all need to WAKE UP. We all need to see. What happened to Alex is a part of the systemic callousness that is pervasive in medicine right now. This child, whom I met, who pet my head...was treated like a caged animal. Like a beast. It was inhumane and unconscionable, the manner in which this boys pain was dismissed. He could not speak, so, he wasn't suffering. He was simply mental. Had they only read the science, the whole story could have ended differently. I will never ever forget, as we pleaded with his doctors, Jeanna, in her signature calm, poised and incredibly brilliant way saying, "Guys, it's all right here in front of you. This is your chance to be the heroes." There are no heroes in this story. Only Alex who made the ultimate sacrifice, for ALL OUR KIDS. 

RIP Alex. You will NEVER be forgotten."

Today reminds me why I should do it more often.  (Hangs head in shame).

Here is the reality of what children of siblings with autism deal with day in and day out. 

I am thankful that I do not have younger children then Austin and that I never have to
 explain this kind of stuff. I hate that I have older children and we have to discuss this stuff. 

This is powerful and part of what families live with day in and day out. It is not just about the kid with autism but about the kids who live with the reality of autism and them having to figure out their place in the world.

It is also about the parents who are so overwhelmed and have no hope and what happens.

The reality is autism kills, and about every 2 months parents hurt, maim or kill their older children with autism.

It is not a pretty truth and it is not a right truth, it is a truth that AUTISM IS UNDER FUNDED, UNDER HELPED AND MISUNDERSTOOD.

When I ask you to donate for my 5k for Talk About Curing Autism I ask you to fund EDUCATION, I ask you to fund Hope and I ask you to fund #RealHelpNow

Please donate and make sure that no other family has to have the talk that Lisa had with her kid and that no parent, like Lisa or me has to be involved in a situation or case like this.


  1. God bless you Shannon. RIP Alex. We will keep fighting in your honor!

  2. The Alex Spourdalakis tragedy is so misreported. There were people who became involved that should not have been involved. There were too many people giving medical advice to Dorothy, even though they had no medical training. They were just bored and nosy moms who had their own agenda (sell that book! Make that movie!!).
    The hospital saw that Dorothy had her own issues and tried to get Alex placed into a better treatment facility. However, the nosy agenda moms put an end to that and kept Alex from being treated. I believe those with the agenda are very much to blame for what inevitably happened to Alex. May he RIP.