A family in crisis
April 12, 2011
For those entrenched in the world of Sammi Mays, life is complex, calculated, and the choices are heart-wrenching.
Living with Prader-Willi Syndrome, which affects roughly 1 in 13,000 births, Sammi, 14, is removed from the fascinations that pre-occupy her female peers – such as friends, clothes, or crushes.
She enjoys physical action, like skiing and running, and she engages in activities her mom or grandmother might set up for her, such as gardening and bead work.
Yet, any change in schedule, or any unsatisfactory condition to her, can trigger the teen to act on pure impulse, sometimes endangering her own safety or that of her sisters and parents.
Prader-Willi is a chromosomal disorder that causes an obsession for compulsive eating, delayed motor skills, low cognition and extreme behavioral problems. With an I.Q. of 52 and in the cloud of anxiety, mood disorder, autism and other illnesses layered on top of Prader Willi, Sammi has trouble processing life’s events.
The more she grows into adolescence, the more extreme her reactions, despite the medical attention she receives.
Such was the time in late 2008 when Sammi lunged at a bus driver and tried to choke her while the bus was moving, or the times she’s lunged from the back seat of the car to grab the steering wheel while her mom drives her and her two sisters.
There was the time in 2010 when she tried to smother with a pillow her little sister Delilah, now 5 years; the time in 2010 when she threatened her sisters with an ice scraper; the time she tried to stab her mom’s arm with a fork at dinner; or the many times she’s attacked her father, or tried to push her 10-year-old sister Cassidy down the stairs, or screamed threats in the school cafeteria. She’s thrown rocks at the family car; she’s deliberately run into traffic; she’s jumped out of moving vehicles more than once.
In early January, Sammi’s parents Erica and Aaron Mays of Fraser had to “peel Sammi off of her sister, limb by limb.”
It was painfully clear: It was time to seek more intensive help for their eldest daughter.
“I don’t know how to keep her safe, myself safe, or my other kids safe,” Erica said last week, having lived in Jefferson County with Sammi at an apartment since that January incident. The rest of her family remains in Grand County.
Life in the Mays home in Fraser has always been structured around Sammi. The three-story home is equipped with three alarm systems, including one on Sammi’s bedroom door.
Care for Sammi requires 24/7 attention, down to Erica taking Sammi into the bathroom with her when she herself showers or uses the toilet.
And when Sammi has lashed out against her father, Erica has whisked her other two daughters into the bathroom for a “spa party” to shield them from Sammi’s violence.
In the kitchen, locks on refrigerators and cabinets keep Sammi from getting into food. Because of Prader Willi, the risk of her eating compulsively – even obscure items like flour, dog food or toothpaste – is ever-present.
Except out of extreme necessity, the Mays are against using physical restraint on their child when her violence flares. They choose alternative methods, such as locking her out of the car, in the car, or out of the home until she calms down on her own.
The Prader-Willi Syndrome Association says behavioral difficulties can “peak in adolescence or early adulthood,” and lists characteristic problems such as temper tantrums, violent outbursts, and obsessive-compulsive behavior. Besides attending to the medical needs of the child, “daily routines and structure, firm rules and limits, and positive rewards work best for behavior management,” the Association states.
“She doesn’t have a sense of reasoning. When I watch Sammi, I have to be with her 100 percent of the time,” said her grandmother Barbara Sponder of Plantation, Fla. “She can’t leave my sight. You can’t guess what will trigger her.”
Still, “She has a heart. I know she does,” her mother said. “She cares about people the best she can. She really does. When she expresses care and concern, it’s very genuine.”
A “very pleasant delightful young lady” who is classified as “very high needs,” Sammi was never without two adults during her hours at school, and “coverage would change every 45 to 48 minutes,” said East Grand School District Superintendent Nancy Karas, a former principal of Sammi’s. Any change in her schedule at East Grand Middle School would require a day’s worth of lead time to prepare Sammi for it.
“It took lots of time helping her process the next step,” Karas said.
“The East Grand School staff did a phenomenal job developing a program to meet Sammi’s needs,” she continued, but “I think to replicate what we were able to do in a home or in a community would be very difficult.”
“We’re super dialed into the disability world,” Erica said, who has worked for the National Sports Center for the Disabled since Sammi was 7. “Our goal for Sammi – for all of our kids – is to maximize her quality of life.”
The Mays have lived in the Fraser Valley for 21 years, and Aaron works in the accounting department for Grand County.
The family is faced with the difficulty of placing Sammi in a constant-care facility that can better meet her round-the-clock needs without the use of restraint. It’s a solution that may bring some stability to their family home, for their other two daughters, they said.
They also see it as essential for Sammi.
“I don’t want people to think she’s a monster, because she’s a great little girl,” said the Mays’ friend Erin Lehman, a former Fraser resident who has professionally cared for Sammi in the past.
But, she said, caring for Sammi one-on-one can be “emotionally, spiritually and physically draining.
“When you’re with Sammi, you have to be on-point all the time,” she added. “If things fall apart, it’s a recipe for an absolute meltdown.”
It’s the kind of close care Erica has been providing alone since the family split for the safety of their other two daughters. While Erica goes to work at the NSCD office in Denver during the day, Sammi goes to a special school in Aurora, through state BOCES funds.
The rest of the day, Erica keeps Sammi within “arm’s length 90 percent of the time.”
“I just take one day at a time,” Erica said, audibly exhausted.
“We’re good people,” she said. “We’re strong people. And our family comes first to both Aaron and me. We’ve kept as private as we could for as long as we could.
“And we always thought, when we needed to ask for help when we needed it, we’d be taken care of.”
That didn’t happen right away when they sought help through Grand County Social Services to place their child in group foster care in Denver, a group home that specializes in caring for children with serious developmental disorders.
For the brief time she’s spent at the group home, where she resided with other children with disabilities, the family said she thrived. “She felt she was accepted,” Sponder said. “And she deserves that. Every human being deserves that.”
With its use of monitors in rooms, 24-hour staff, and oversight that does not involve use of physical restraint, Sammi was recommended placement by a network of physicians and advocates, which included the Children’s Hospital in Denver.
But Grand County had maintained for longer than a year that Sammi was better served at home, and as the Mays family sought more intense care for their daughter, the matter ended up in Grand County Court.
“We do not believe that this chid is any danger in their home. They’ve been doing fine with the child,” argued Grand County Attorney Jack DiCola during a Feb. 15 hearing before Judge Ben McClelland.
“We believe this is simply a case of mother doesn’t want the kid. And Your Honor, and we don’t want to accommodate that,” the court transcript reads.
When they learned of DiCola’s argument that day, the words stung Erica and Aaron. “How could I possibly respond to that?” Erica asked, adding she loved her daughter “with all my heart.”
DiCola was contacted twice for comment on this story, but declined for reasons of confidentiality.
If Grand County were to facilitate placement of Sammi through its Social Services Department, after three months of care, a federal program through the Child Health and Rehabilitative Services would kick in and funnel federal dollars to pay for Sammi’s residency at the group home, her parents said.
Although Grand County Manager Lurline Underbrink Curran said she did not have full details of the case due to its nature, “I always have believed that Grand County is most sympathetic and does everything possible to help families, and especially children.
“When Social Services is brought into child protection cases, it does what is best for the child in accordance with the laws. I believe everyone who works there is compassionate, and (their work) weighs on them,” Underbrink Curran continued. “And Jack DiCola has worked in child protection for more than 30 years, and I’ve always known him to advocate for the benefit of the child.”
The County Court filed a restraining order to prevent the parents from “abandoning” Sammi – in other words, to prevent them from keeping her at the group home where Sammi had been placed by Jefferson County Social Services after she “destroyed” a room at the Ronald McDonald House where she and her mother had stayed for a brief time.
In a subsequent County Court hearing, Grand County Assistant Attorney Bob Franek read from statute that the “purpose” of Social Services is “to secure for each child such care and guidance preferably in her own home as well as best serves her welfare and the interest of society.”
“I think we’re up here saying, these parents can parent,” Franek told the court. “They can do this. Along with the services that we can provide, they can do it.”
But Erica contends the type of medically recommended, 24-hour specialized care she and her husband sought for their daughter is not available in Grand County. For longer than a year, the family has tried to assemble a team to care for Sammi in the home to the extent she needs, but have been unsuccessful.
In-home care ultimately would have been much more costly than Grand County’s temporary support for a live-in facility, Erica said.
“What has happened here is we had parents make a unilateral decision, forcing their decision on the people of the state of Colorado and the county of Grand,” Judge McClelland said during a Feb. 18 temporary custody hearing. “That is not appropriate.”
“How do we protect our other two children?” Aaron Mays asked the court, to which McClelland responded. “It is the order of the court. You have protected your other two children for 14 years.”
As Sammi was temporarily living at the group home in Denver, the county alleged her father violated the “emergency” order to not abandon Sammi and charged him with contempt of court, with possible penalties of up to 6 months in jail and a $50,000 fine. The contempt charge, which was later dismissed, cost the Mays roughly $15,000 in attorney’s fees, Erica said.
Sammi’s Guardian Ad Litem Carol Krohn, appointed by the court, suggested it may even be better for Sammi to remain in the family’s home while her two sisters “be placed out of the home from time to time,” according to the transcript of a March 11 hearing regarding the “Interest of Samantha Mays” before Judge David R. Lass (standing in for Judge Mary Hoak) in the 14th Judicial District Court.
By the time of the March 11 hearing, Sammi was back in the sole care of her mother in Jefferson County.
And upon a judge’s ruling in District Court, Grand County dismissed the Mays case.
Yet without the cooperation of Grand County, the family no longer had a way to place Sammi in the group home.
And the county’s legal posturing had left the Mays jaded and distrustful of the system, they said.
Grand County Social Services first became involved with the Mays family after the bus incident in 2008, but in 2010 closed the family’s case because of Sammi’s perceived successes in school and at home.
On March 31, Grand County Social Services Director Glen Chambers changed direction of the agency and agreed to group-home placement – during a large multi-jurisdictional meeting that included the director of the Division of Child Welfare for the State of Colorado, who said Sammi qualified, Erica said.
For the Mays, this long-awaited breakthrough could mean a chance to finally seek constant care for their daughter: “Because she deserves better,” Erica said.
– Tonya Bina can be reached at 970-887-3334 ext. 19603