St. Gerard House's luncheon highlights impact, need
Times News - 4/25/2019
April 25-- Apr. 25--When Eleanor Martin brought her daughter,Celia, to St. Gerard House in 2016, the family was lost in a time of darkness.
Martin shared her story with hundreds at St. Gerard House's ninth annual First Words of Hope luncheon Wednesday at Blue Ridge Community College. St. Gerard House is a nonprofit organization in Hendersonville that serves those on the autism spectrum and their families.
Celia has fought severe medical problems since her birth. She received an official autism diagnosis at the age of 3 and is nonverbal. Celia and her twin brother, Edward, are now 8. Edward and Martin's other son, Quentin, are neurotypical, meaning they aren't on the spectrum.
Martin is a pediatrician with Asheville Pediatric Associates. While she has dealt with many special needs children and their families in her career, like most people, she didn't think she'd ever be in their position.
While Celia battled and overcame various and serious health issues in her short life, she still needed more attention and help than a regular school setting could provide. Preschool was tough for Celia, and kindergarten wasn't any different. Martin remembers the heartache she felt dropping Celia off at school.
This left Martin desperately searching, like many parents of autistic children, for a place to take her daughter that would give Celia the direct attention and skills she needed.
After touring St. Gerard House, Martin was blown away by the learning environment specifically and carefully designed to meet the needs of children on the spectrum.
"I remember thinking, this is where she needs to be," Martin recalled.
She was relieved not only knowing her child would be able to get the help she deserved, but by the welcoming nature of the staff. She remembers hearing Assistant Director Bertha Medina say she was excited to meet Celia.
"It was this moment where I started crying because I hadn't ever had anyone tell me that they were excited to meet Celia before," Martin said. "I've had a lot of people tell that they (could help Celia), but no one had just said, we are excited to meet your kid."
When Medina met Martin, she knew she wanted to go to bat for the family.
"But honestly that is how we feel about every family we meet," she said.
St. Gerard House allows children to become lifelong learners and discover who they are, Medina explained.
"These kids work harder than anyone I have ever met," she added.
Over the past two years, Martin has seen her daughter thrive. Celia lets her opinions be known, and her sense of humor shines.
Through St. Gerard, Celia has learned to communicate with hand signals and continues to gain daily living skills.
"Celia is not a child that will ever attend a regular school. She will not go on a first date and graduate. She will not get married and move out and start her own family, and that's OK," Martin said. "Because of the St. Gerard House, Celia has friends, she's learning daily living skills, and she may even have a job one day."
Most importantly, Celia is happy.
"Celia's story is still being written, and it is not the story I imagined for her, but regardless of what the future holds, Celia has a voice and she is writing her own story thanks to the wonderful people of St. Gerard House," Martin said. "And let me tell you, her story is amazing. It is one of triumph, it is a story of courage, but most importantly it is a story of love."
A growing demand
Celia is one of several children who receive services through St. Gerard House, and the demand continues to grow significantly.
When St. Gerard House first began nine years ago, the nonprofit had one paid staff member and worked with two preschoolers out of an old hair salon.
The organization served 420 individuals last year and is now located in a larger facility onOakland Street.
"Our goal has always been to change the course of autism for families, because the rate of autism had been growing at an alarming rate and families had nowhere to go," Executive Director Caroline Long said.
Helping individuals with autism and their families experience more joy and meaningful life outcomes is at the heart of the mission. When the nonprofit started in 2010, the rate of autism diagnosis was 1 in 110, according to Long. Today, it is 1 in 40, she said. That figure comes from a published analysis by the National Survey of Children's Health.
"That is a 175-percent increase in the short nine years we've been open and it is very alarming," Long stated. "I have heard all of the arguments about better diagnosing and the definition being changed ... but the bottom line is this is real and available resources can't begin to handle it."
St. Gerard House has seen an average of 33-percent growth over the last five years.
"It is impossible to keep up with growth and demand, but more importantly, it is impossible to ignore," Long added.
Currently, 80 families are on the waitlist for services with St. Gerard House. Long believes it would be even longer is people weren't disheartened by the fact that it can take two to three years to get off the waitlist.
"Every single person on our waitlist is an entire family whose lives have been put on hold," Long said. "The demand for services has outpaced our programs, and our programs have outgrown our space."
Since last fall, the nonprofit has relocated its administrative offices, which opened six new rooms for therapy.
"We are trying everything we can with our current assets to expand capacity," Long said, adding that the nonprofit is hiring.
Family support nights are one way the organization can reach more people. Families don't have to be receiving services to come. A meal and child care is provided, and information is given based on what the families would like to discuss.
An unclear future
One piece of the puzzle that sometimes gets lost in the shuffle is adults with autism. More than 500,000 high schoolers with autism will age out of school services by the year 2025. The age limit is typically 21.
"Children with autism grow up to be adults with autism. The increase in prevalence leads to an increase in need for adult services," Long said.
Long has two teenagers on the spectrum. Her son, Liam, is now 18. This has presented a new set of challenges and questions about what the future holds.
More than 80 percent of adults with autism are underemployed or unemployed, Long said. The services available are not prepared for those with autism entering adulthood.
"Just because someone turns 18 or 21 or whatever age you deem to be an adult, it doesn't mean that they don't have autism anymore and it doesn't mean that they are going to stop learning," Long said. "Their potential is not necessarily limited by their abilities. It is limited by the failure of a system that was supposed to be supporting them."
St. Gerard House uses Applied Behavior Analysis practices in its programming, which is a scientific approach to understanding behavior. Clinical Director Rachael Cushing Cook briefly explained what that means for those served by the nonprofit.
"We believe that all behavior occurs for a reason, and that reason can be found in the environment," Cook said. "Once we determine that reason, we can manipulate the environment to change behavior."
ABA therapy allows staff to increase a child's skill acquisition and reduce behaviors that can get in the way of learning, she explained. These skills include eye contact, following directions, social play, self-care, conversation skills and more.
Most are often learned naturally by neurotypical children, but may need to be addressed individually and for longer periods of time with children on the autism spectrum.
When a child first comes to St. Gerard House, they are given a baseline to see what skills they need to work on to meet the standard. ABA therapy has shown the most successful results, Cook said. After one-on-one training, staff repeat the baseline with the child after a year to see where they stand and if focus areas need to be altered.
"I don't think these therapies are useless; I just don't think they're intense enough," Cook said.
More intensive support and evaluation of data is needed, she said. And more people, like politicians and educators, need to be focusing on these areas as well.
North Carolina now has coverage for ABA services for children with autism, Long said, specifically thanking N.C. Rep. Chuck McGrady and Lori Unumb with the Autism Speaks organization.
"It is a great start, but the fight is still not over," Long said. "We still need to battle to get better coverage and to get more families to have coverage and to get coverage for adults."
How to help
The lunch concluded with a plea for donations by Vice President of the St. Gerard House Board of Directors Dorsa McGuire. The nonprofit would not be able to function without donations.
It is always better to give than to receive, McGuire told attendees, and their giving allows St. Gerard House to continue and expand its mission.
"You can be a small candle that has joined with other candles that will defeat the darkness of autism and help a child like Celia grow and learn and thrive and hug and laugh," McGuire said.
To learn more about St. Gerard House, go to www.stgerardhouse.org. Donation information, along with details on how to become involved with the nonprofit, is available online.
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