I’d like to introduce you to Alex Spourdalakis, a 14-year-old boy who lives with his mother, Dorothy. Alex is not like most 14-year-old boys. He has severe autism with cognitive impairment, and he is non-verbal. Like many kids with autism, he experiences periodic disruptions to his sleep.
A few months ago, Alex’s sleep disturbances got serious enough for him to be become agitated and aggressive. This coincided with the onset of severe gastrointestinal symptoms, like constipation alternating with diarrhea. In the middle of February, his mother took him to Gottlieb hospital in Illinois, USA. He was in excruciating pain, which manifested as aggression.
For 13 days, Alex was kept in locked restraints, only being released to use the bathroom. Bear in mind that this kid was suffering from constipation, diarrhea and vomiting. He tried to communicate when he was getting sick by screaming, but staff frequently didn’t release him in time and he would have to lie in his own vomit for several minutes at a time. He would be allowed to use the bathroom, and then he would be wiped down and returned to the restraints.
During this time, Alex was given a cocktail of drugs that were not helping, and repeated pleas by his mother for his allergies to be considered fell on deaf ears, even as his skin became raw from allergy-induced dermatitis. He was not formally admitted to the hospital, nor was a proper treatment plan devised for him.
Are you horrified yet? Brace yourself, because the story continues.
After 13 days, Alex was transferred to Loyola Medical Centre. The following day, a gastrointestinal consult was ordered. The gastroenterologist did not show up for another four days, and when he did, he asked a few questions about Alex’s medical history but did not bother to physically examine him despite the obvious pain he was in.
18 days after Alex was first taken to hospital, a doctor finally acknowledged that he was in pain and scheduled appropriate medical procedures.
Let’s pause for a moment to think about that. 18 days.
Most people would have been undergone the appropriate testing and treatment within 24 hours. In Alex’s case, it took 18 days of pain, agitation, lying in pools of vomit, and warrior-like advocacy on the part of his mother, just for the procedures to be scheduled.
While all of this was going on, Alex was still in restraints. He was still having to be released to use the bathroom, and he was still lying in piles of vomit while he waited.
Alex has now been in hospital for over a month. He has still not received the medical procedures he so desperately needs, and a proper treatment plan is still not in place for him. His family have been begging for X-rays, CT scans, tests, anything – but no-one is listening. No-one seems to care.
Although the restraints have been removed, he is now under the watchful eye of a permanent security guard who snaps at him and talks down to him every time he tries to move. The phone has been removed from the room, so Alex’s mother has to leave him at the mercy of the security guard when she has to make a call. The call button – that essential link between patient and nurse – has been taken away.
Alex is still screaming with pain. He is still not sleeping, and he is still in a state of extreme distress. He has not been seen by one person who specializes in the treatment of kids with autism, and absolutely no accommodations are being made for his disabilities. Truth be told, absolutely no accommodations are being made for the fact that he is a human being.
He is still not being medically treated, and he is still being treated with utter disregard by hospital staff. They are not being permitted to leave – Alex’s mother has been threatened with calls to Child Protective Services.
Alex and his mother are in a horrible version of hell. And no-one, it would appear, wants to listen.
To help Alex and his mother, please read this letter that was written to CNN, who so far have declined to cover this horrific story. And please, please, please sign this petition to help Alex get the medical care that he needs.
For periodic updates on Alex’s story, please visit Age of Autism.
The picture of Alex is reproduced with the permission of Age of Autism.
This is an original post for World Moms Blog by Kirsten Doyle of Toronto, Canada. Kirsten can also be found on her blog, Running for Autism, or on Twitter @Running4autism. You can also connect with her on Facebook.
Thank-you, Kirsten, for sharing Alex’s story! It’s absolutely horrific. Many lawyers have been contacted, and most are shying away. The media response has been next-to-nothing. It’s baffling.
His mother Dorothy has got to be one of the strongest women I’ve ever heard of. If anyone reading this has decided to say a prayer or two for Alex, please include his mom Dorothy, as well.
I can’t breathe. This is so awful.
I hope Alex gets the care he deserves, Kirsten, and I’m glad we can help spread the word about the abuse going on right now. We, as a society, cannot let this happen.
I am furious.
Jen
This makes me sick. A friend of mine LOST her daughter (LOST HER) at the age of 11 when she was hospitalized for her gastrointestinal problems (the little girl had cerebral palsy and had severe digestive problems as well as being Deaf). She developed an infection, but she also kept insisting to her mother that he leg was hurting her. She only spoke in sign language, and the hospital staff treated her as if she was non-verbal. The mother kept insisting that her daughter’s leg hurt, but no one examined the leg because they thought she was misreading her child’s pain from the gastrointestinal issues. Well, she wasn’t MISREADING anything, she was being told, clearly and specifically by her daughter in ASL that the leg really hurt.
By the time they discovered what the surgeon called “the biggest clot he had ever seen” in her leg, sepsis had set in and it was too late to save the child.
Working with people with disabilities showed me that people who have speech deficits (many people with CP, for example) or who are nonverbal are treated as non-human.
It makes me so angry.
Especially since I work in veterinary clinics where ALL our patients are non-verbal and occasionally need to be restrained… and get much, much better care than it sounds like this boy has received.
OMG! Whatever happened to human compassion? Are we back in the Dark Ages? There truly are no words to express the appropriate amount of outrage that this could be happening in “civilized” society! 🙁
Shocking that in this day and age this is what happens.
It is terrible that this is happening. I am confused about one important point here: why can’t the parents just take their son out to a different facility? Is the child a ward of the state?
This is scary and disgusting. If this ever happens to my son, there will be hell to pay.
What a horrific story to read upon waking up this morning. This should be plastered all over the news, TV, newspapers,….social media. I,too, wonder why the mother can’t remove her son to another hospital.