- Posted March 15, 2013 by
June 9th, 2013 Alex Spourdalakis May you rest in peace
Our final entry here will be Alex's Prayer Card from his family's wake held last night. We do so to honor Alex's life and in rememberance of him.
His story will be told and we would encourage the autism community, as well as others, come together to support individuals living with autism, their families, and to ensure choice for all individuals living with autism.
Decemeber 18, 1998- June 9, 2013
Don't grieve for me, for now I'm free
I'm following the path God laid for me.
... I took His hand when I heard Him call;
I turned my back and left it all.
I could not stay another day,
To laugh, to love, to work or play.
Tasks left undone must stay that way;
I found that place at the close of day.
If my parting has left a void,
Then fill it with remembered joy.
A friendship shared a laugh, a kiss;
Ah yes, these things, I too will miss.
Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life's been full, I savored much;
Good friends, good times, a loved ones touch.
Perhaps my time seems all to brief;
Don't lengthen it now with undue grief.
Lift up your heart and share with me,
God wanted me now, He set me free.
A worldwide candlelight vigil will be held to honor Alex Spourdalakis on June 16th from 7:00pm to 12:00am.
A Facebook page has been set up to coordinate events and let others know about those being held.
Additionally we would like to share this beautiful piece written by Michelle M. Guppy for her own son. She now shares this for Alex.
"God’s Beautiful Butterfly"
I am a child who has Autism,
Who may not do things exactly like you.
But that does not mean you should ignore me,
I have feelings and emotions, just like you.
I can hear the things you are saying,
Even though with words I cannot yet speak.
I may not be able to play sports like you,
But that does not mean I am weak.
I know there are many things about me,
That you simply do not understand,
But please don't assume things about me.
Talk to me, and perhaps offer to shake my hand.
I may have a mind that works differently,
Pages in a book – I may flap instead of turn,
But that does not mean you can't teach me,
You might be surprised at just what I can learn.
If you think when I don't cooperate, I'm misbehaving,
And conclude that I'm not disciplined enough,
Please take a moment to consider,
That the road I am traveling can be tough.
When you stare at me, point, or start to whisper,
It makes me sad, and I so want to cry ---
Why do you view me as some crippled caterpillar?
Why can’t you see that I'm God's beautiful butterfly?
c. 2003 by Michelle M. Guppy
Dedicated to Brandon Michael Guppy.
For permission to reprint: MichelleMGuppy@yahoo.com
June 9th 213 - Update
May you rest in peace Alex after passing away today. You will be in our hearts and souls and as your community grieves for you, please know we will not let your death be in vain.
You were very loved and many, many people assisted in trying to help you obtain what was needed. Those efforts were well fought and honorable. However in the end we were not able to obtain what you needed, which was appropriate medical care and a safe place to be to obtain that.
Until the circumstances of your death are known, we ask that there be no speculation so that no further harm will come to the autism community and those still struggling each day to meet the needs of their loved ones.
In the interim we ask that you pray for Alex, his family, and his community and get ready to assist in sharing this story so that we do now have another death of this nature take place.
We also ask that you send CNN a message and request that they cover this story from the point of view originally requested which was to address why Alex and his mother were not able to obtain adequate medical care for him.
Thank you very much.
Day 34 - March 23, 2013 - Update on Alex Spourdalakis's story as he has been allowed to seek appropriate medical care. A letter from Dorothy Spourdalakis:
To all the people who cared enough to get involved:
Alex and I would like to thank everyone for their prayers, good thoughts and cards with beautiful drawings and best wishes. I would especially like to thank the one person who became my son Alex's silent benefactor. She is truly my son's "angel".
It is during times like this we as a family realize our full potential. We know no one will help us unless we help ourselves. The continued abuse, medical neglect, discrimination and ignorance have to stop. Vaccines have maimed too many already and there are many more to come. The CDC's latest stats confirm that. We are not going away, nor are we giving up. My son Alex is just one of millions of children and adults who no longer will be silenced.
We as a group have been deceived and lied to long enough. Our children have paid and are continuing to pay the ultimate price because of greed. The health care system has failed terribly. It is our responsibility to continue to bring about change.
Please continue to follow Alex on his journey toward better health. Allow us to be a part of your lives. Our strength will continue to come from everyone and anyone who would like to continue with us. Alex will hopefully get the medical testing he needs but was denied until now. So much needs to happen in order for us ensure his recovery and I still need so much help! Please continue to follow my team of helpers for updates and fundraising efforts. I cannot tell you how much I appreciate and value every single one of you who have gotten us to this place. Thank God for the internet and facebook!
I could not have done this without the help of Mark Hellner of Center for Disability & Elder Law and Agatha, Alex's godmother and Michael my friend and Alex's respite worker.
I am grateful for Age of Autism, its editors and especially Lisa Joyce Goes. I am also grateful to Autism is Medical (AIM) especially Jill Rubolino and Jeanna Reed and Dawn. None of this would have been possible without them. There are others who have asked not to be identified. They also are heroes in their quiet way.
Lastly, and most importantly, I am proud of my son, Alex who has endured the unimaginable. I am proud to be his mother.
Love and Respect,
We are still asking that there be a story on this type of treatment case due to Alex not being the only individual with autism being denied appropriate medical treatment. There are many individuals still across the country who are being physically and/or chemically restrained and having their rights violated.
We are asking that you do an investigative story into Alex's case and assist Alex in getting the appropriate medical care he needs. Please help him and those who are worried about him daily and praying someone will care enough to assist. This story is what is transpiring in health care today. This could be any of our children.
What is needed: Loyola Medical Center, Maywood, Chicago, Illinois: Provide Appropriate Medical Testing and Medical Treatment for Alex Spourdalakis.
On behalf of Dorothy Spourdalakis, Alex's mother and according to first hand eye witnesses and Dorothy Spourdalakis, Alex's mother:
We are reaching out on a Global Level to ensure the health and well being of all individuals without delays or prejudice due to any disability or other protected category.
According to first hand eye witnesses and Dorothy Spourdalakis, Alex's mother:
Alex Spourdalakis, is a 14 year old nonverbal autistic child that as of March 15, 2013 is an inpatient at Loyola Medical Center in room 2243 in Chicago Illinois. He has severe autism and had been kept there, on an adult floor, since his transfer from Gottlieb Hospital on 2/28/2013.
Alex remained in locked restraints to all four of his limbs for in excess of 20 consecutive days, including the days he previously spent at Gottlieb held in an ER bay for approximately 14 of those days, unable to be admitted into a room.
Alex's basic human needs were not met.
Alex did not have any accommodations for his disability.
Alex did not have anyone attempt to provide him the ability to communicate.
Alex has not been held in the least restrictive environment and the frequent assessments for his need to be restrained, as required by regulatory agencies and hospital policy, were not performed.
Not one professional that specializes in autism had examined him.
Alex was kept in locked restraints without any written plan to work towards release. Alex was denied medical care and intervention by this facility that he was specifically transferred there to receive.
Alex's mother had been denied a list of physicians in charge of his care.
His mother had been denied a list of medications that are ordered for her child.
His mother did not have access to a phone inside the patient room in order for her to access resources.
He had not received any medical services other that psychiatric medications, restraint and seclusion since he arrived.
He had a delay in treatment waiting 5 days for an
ordered consultative physician to see him and one additional day until he was examined by a specialist for his gastrointestinal problems, the very reason he was transferred to this facility.
He had been held in restraints while the physicians had ordered and then canceled this procedure.
He was not being provided appropriate foods as he has many food allergies.
He did not have access to any specialized evaluations or services from any professionals such as occupational health, speech therapy, developmental pediatrician or behavioral specialist who might have been able to address his disability.
He was being denied medical care and accommodations for his disability of autism and his mother was purposefully being separated from him and threatened by hospital staff.
His pain had not been assessed or treated.
None of the many standardized assessment tools for nonverbal patients had been utilized and his mother was told that staff is “unable” to determine if he is having pain.
He has not been medicated for pain.
What we are asking Loyola Medical Center, Maywood, Chicago, Illinois to do:
Provide Alex Spourdalakis with Immediate Medical Testing and Medical Treatment without further delay.
Allow one of the many Autism Doctors who specialize in Gastrointestinal Disorders of Autistic Individuals that has been presented to you and your staff take the lead on his medical treatment plan and care.
Provide his mother Dorothy Spourdalakis a list of medications that are ordered for her child.
Provide a phone inside Alex's room in order for her to access additional resources to ensure the safety, health and well-being of her child.
Remove all restraints and orders for such.
Move him to the pediatric wing of the hospital.
Consult with Dorothy Spourdalakis and a Autism Medical Specialist to ensure Alex's dietary needs are met to ensure his food allergies and intolerance's are not aggravating any underlying gastrointestinal or other medical conditions that may also cause adverse behaviors.
Provide and allow Alex and his mother Dorothy access to specialized evaluations and services from any professionals such as occupational health, speech & language therapy, developmental pediatrician, Autism Medical Doctor and positive behavioral specialist who have the background and education in working with children with autism.
Put safeguards in place to ensure Dorothy, Alex's mother has full access to her son and his care without harassment by hospital staff.
Demand all hospital workers who enter Alex's room, are a part of either directly or indirectly, his care, be educated in working with and communicating with children with special needs. Demand they wear their name badges in full view.
According to eye witnesses and Dorothy Spourdalakis, Alex's mother; The following patient rights, as outlined by JCAHO, have been violated:
You have the right to be informed about the care you will receive.
You have the right to get important information about your care in your preferred language.
You have the right to get information in a manner that meets your needs, if you have vision, speech or hearing, or mental impairments.
You have the right to make decisions about your care.
You have the right to refuse care.
You have the right to know the names of the caregivers who treat you.
You have the right to safe care.
You have a right to have your pain addressed You have the right to care that is free from discrimination because of physical or mental disability.
You have the right to get a list of all your current medications.
You have the right to be listened to.
You have the right to be treated with courtesy and respect.
View an interview here with Dorothy Spourdalakis:
For more information and to sign a petition to assist Alex:
Alex needs more help! Please call these folks and tell them Alex’s rights under CRIPA have been violated. Please e-mail to document your request.
Jonathan M. Smith Chief Special Litigation Section- Civil Rights Division- Department of Justice
(202) 514-6255 (877) 218-5228 FAX - (202) 514-0212
Alt. FAX - (202) 514-6273
Email - Special.Litigation@usdoj.gov
Then contact these folks. They oversee all of the Protection and Advocacy agencies in the country. Ask them if they can help Alex Spourdalakis and his mother Dorothy.
National Disability Rights Network
900 Second Street, NE, Suite 211
Washington, DC 20002
P: 202-408-9514, F: 202-408-9520
Then call each and every autism or disability advocacy agency that you have made contributions to, are a member, or have connections with and ask them to assist Alex. Every single one.