Our Story written 7 years ago #SamanthaMartin

Written seven years ago:

February 4, 2012

Most know our story because many have lived it alongside us. However, I am often asked to recall the details to those who are unfamiliar so, here, is Samantha’s story in brief: 

Our daughter Samantha was born in 1993 with a rare genetic condition called tetrasomy 18p syndrome, autism and absence seizures. Samantha suffered sudden cardiac arrest one day and died unexpectly. NO ONE with the syndrome, but our little girl has succumbed due to the disorder! 

At the time of our daughter’s birth, dire prognosis for development, led the University Genetics’ Clinic to benignly refer social services’ to help us locate supports. However, that was not what transpired: Instead, we were advised that the sole way to achieve necessary government funding for medial therapies and services would be for Samantha to live in an out of home medical placement. Natural families, the Ministry Represented stated, could not receive the level of needed support such as that provided to foster care. 

We were informed that if we wished to offer our child a chance at life, this was the “kindest thing to do”. Reeling from the dignosis that our daughter would likely not walk, talk, see, nor comprehend that we were her family (the hated phrase utilized to describe lack of development was “imbecile”), we were terrified and naively succumbed to “expert opinion”. 

In a nutshell, optimum care was not afforded our daughter. In fact, grave issues surfaced and although we repeatedly brought concerns forward to our caseworker, these were belittled and ignored. Years went by as we tried to learn our rights and responsibilities… No one would tell us the truth: The foster mother and caseworker indicated that there was a guardianship split from which the Ministry had the final say. We, our family, were legal guardians of our child; yet until our daughter lay in hospital dying this information was not revealed to us. 

You see, we had entered into an “Agreement” with Ministry all those years ago – which unlike an “Order”… our arrangement was strictly to achieve medical supports – as advised – and at no time ever was our case an intervention issue. Yet, we were treated as such… distanced from our child, siblings unable to see their sister and all parental rights erroneously transferred to the placement. The caseworker informed that she had difficulty locating placements for children less disabled than Samantha and advised us not to make waves. We later learned that we were “1 of 4 families” in the Province of Alberta who existed under the archaic Agreement. 

Following the death of our daughter, I began to seek records that I then knew we were entitled to obtain. I learned the most heart-breaking revelations. For instance, a Principal and Rehabiliation Aide at Samantha’s school witnessed the foster mother take hold of my daughter and shake her. The reason? Samantha had been sick, vomiting all day and a decision was made by authorities that she could not safely return to the placement on a school bus; that Samantha would need to be retrieved. The foster mother, they wrote, was so angry, denying illness, that she took Samantha and yelled, “STOP IT” as she shook her when she began to vomit. 

I discovered from past medical records even MORE sinister health concerns had emerged repeatedly… Samantha sustained 7 broken limbs, stitches, and various other injuries in the foster placement. Our little girl was first recognized having absence seizures by an RN on her 3rd birthday. 

Throughout the years, other specialists witnessed similar signs and recommended follow-up assessment for treatment to the foster mother – which the caseworker had knowledge of – yet no medical intervention was sought, nor were we the family and legal guardians ever informed. I had, at one point, even asked outright whether there was a possibility of seizures because statistical research indicated that 25% of individuals with the syndrome have a disorder. I requested that the information be shared with the pediatrician, but he was never told. I learned as well, that the caseworker, too, knew about the seizures and naively trusted that the foster placement would secure medical intervention and never followed up to ensure it had occurred. 

Twelve years after Samantha’s birth, at last, the Office of the Child Advocate in Alberta became involved. I credit Samantha’s escape from foster-care to this agency AND the fact that her file was removed from the Office which had been over-seeing decisions for nearly her entire life. Samantha came home and immediately flourished! She gained 10 pounds; which was 20% of her body mass having been only 50 pounds throughout the ages of 11- 13 in foster care. 

Within the summer months, I taught Samantha to toilet and she gained continence during daytime hours; so proud of herself having experienced wearing “big girl” panties for the first time in her life. 

Language also began to emerge… Samantha started learning words and with her brothers’ efforts each day, began to accurately say their names! Thirteen years of being non-verbal and suddenly Samantha was able to say words and very close approximations of phrases. “Good-morning!” She would greet her bus driver happily. The strides in development in all areas was extraordinary. Social-worker remarked that Samantha’s development had obviously been severely repressed. Teachers referred to Samantha as “A butterfly who emerged from her cocoon.”

Now watching Samantha on a daily basis, we, ourselves, suspected the presence of seizure activity – confirmed by educators – so pursued testing with neurology (EEG.) Our pediatrician even witnessed Samantha having an episode in the office! A second evaluation was to take place and treatment was to begin, however, within days of that office visit, our daughter suddenly took ill at school. A second EEG was scheduled for the very next day; I spoke with the hospital’s nurse and she advised we continue to monitor Samantha and the anesthesiologist would decide whether or not to proceed with sedation. 

In the early evening, our daughter did not respond to her name so we rushed to emergency where she was determined to be in cardiac arrest at the hospital. In hindsight, I don’t believe Samantha was merely resting, but was actually exhausted from having repeated seizures during sleep which caused the heart to stop functioning. 

Samantha passed on December 3rd 2006. Amendment to the Family Supports for Children with Disabilities (FSCD) legislation was effected retroactive to December 2006; which I was informed by FSCD, was because of Samantha.

The life and circumstances surrounding Samantha Lauren Martin caused me to challenge archaic laws inhibiting the rights of persons with disability & their families resulting in the establishment of: 

“Samantha’s Law” 

https://en.m.wikipedia.org/wiki/Samantha’s_Law

http://www.child.alberta.ca/home/527.cfm 

Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services: 

“The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services.” 

Amendment, which, I am currently petitioning the Court to have the legislation formally named in tribute to Samantha, the child, from which amendment evolved:

http://www.petitiononlinecanada.com/petition/samanthas-law/67

While I appreciate that the Ministry refers to our history as “a learning experience” for them. For us, the absence of our child will forever hold an empty space in our hearts and lives that we must constantly strive to survive. The sole consolation that we may take is the hope that archaic perspectives towards individuals with disability may begin to change and with this – “Samantha’s Law” – other loving families, their children and constitutional rights will better protected in the future. 

Society appears to be more accepting of diversity, however, legislation to protect basic human rights of individuals with disability largely lags behind. And, enforcement of law that does exist, tends to fail our most vulnerable. We must strive to alter the past so that the future holds better promise of constitutional adherence to law. Enforcement must not only be for the general public, but also include members of Government Authority who breach legislation. Forcing families to relinquish custody and out of home placement of their loved one with medical diveristy is no different than the archaic practice of hiding persons with disability in institutions. 

Often, where no law exists, the Courts do have the ability to establish decisions based upon precedence set in neighbouring jurisdictions… This is our greatest hope for all: Recognition that our daughter’s life held significance as she continues to live on by aiding others in need. 

In a nutshell, this is our story, Samantha’s far too short life and death… My baby girl, loved so much that we let go and will always have to live with the cost of trust. While I cannot go back in time to change my family’s outcome, I can strive to help others in similar dire need, protect their rights to Family-Centred Care Practice. That is Samantha’s legacy of hope.

-VM

Samantha’s Law on Facebook:

https://m.facebook.com/SamanthasLaw/

Justice for Samantha Martin: 

https://m.facebook.com/groups/JusticeforSamanthaMartin/

The Samantha Martin Story: 

https://youtu.be/DqafFSA1s08 

#AlbertaPrimetime 2013 #SamanthasLaw 

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