A fighting chance: Community advocates seek to meet demands of evolving special needs residents

Reagan, 3, was born with the most common type of Down syndrome, Trisomy 21 (nondisjunction). (photo courtesy of Chelsea Molanick)

Local advocates and specialists within the Valley of the Sun appear to be fighting the notion that people with special needs can’t do what their typical peers can do.

Whether it’s a high school dance class, a place to spend time after school, a local business offering free physical therapy opportunities or a loving mother and community, the network supporting people with special needs is working to give the growing group the necessary tools to life, love and happiness.

Around the city of Scottsdale, this network is comprised of supportive families, educators and professionals.

A person with special needs, as defined by Merriam-Webster, can encompass various difficulties that cause an individual to require additional or specialized services or accommodations such as in education or recreation. These difficulties can include physical, emotional, behavioral, or learning impairment.

Two prevalent conditions in the United States and Arizona specifically are Down syndrome and autism spectrum disorder.

The Centers for Disease Control and Prevention estimates that one in 59 children has been identified with autism spectrum disorder, according to estimates from CDC’s Autism and Developmental Disabilities Monitoring network.

Autism spectrum disorder refers not only to autism but also to a collection of brain development disorders such as Asperger’s syndrome.

In the 1970s and ‘80s, about one out of every 2,000 children had autism, a Web MD report states.

ASD is about four times as likely to occur in boys than in girls, the CDC states.

Down syndrome is the most commonly occurring chromosomal condition, with about 6,000 babies born with the syndrome each year — or one in every 700. The syndrome diagnosis grew about 30 percent between 1979 and 2003, the CDC says. Estimated life expectancy has dramatically increased from 10 years old to about 47 years old, as of 2007.

In 2008, one out of every 1,200 people (children, teens and adults) living in the U.S. had Down syndrome, about 250,700 people, the CDC reports.

Camilla Prais spends the afternoons at Scottsdale’s Adaptive Services after-school program. (Independent Newsmedia/Melissa Fittro)

The drive

On a spring Wednesday afternoon, a group of teenagers hung out watching syndicated “Sponge Bob Squarepants” episodes, coloring, working on lessons and ultimately doing a tie-dying activity at the Scottsdale Adaptive Services building.

About 10-15 patrons were at the facility, 8102 E. Jackrabbit Road, where an afternoon meet-and-greet took place with verbal and nonverbal teenagers.

The recreation center down the street from Mohave Middle School, and abutting Chaparral Park from the west, provides solace for people of all ages with disabilities or special needs. In Arizona, it is the first municipality-run center specifically for adaptive services, the operations supervisor says.

Providing resources to those with special needs is crucial, Scottsdale Adaptive Services Operations Supervisor Deanna Zuppan says.

“It’s been really important to me professionally to help educate the people I work with and our upper management to understand this is where we are going,” Ms. Zuppan said, pointing to an increase of people identified as being on the spectrum.

“Thankfully, I have such a supportive director (and) we have been able to divest in some program areas and invest where it’s needed. So we don’t look the same as we did even five years ago, because if you’re not changing, you’re behind the times — and I don’t see that that’s going to change.”

Scottsdale’s adaptive services building is two stories, and offers multiple rooms with specific functions, including a kitchen to teach people with disabilities how to cook for themselves. The building is in the midst of creating outdoors garden and a yard, too.

The city’s various programs run Monday through Saturday, from 7 a.m. until the late evening. Ms. Zuppan says their mailing list has more than 3,000 contacts.

Ms. Zuppan has worked for municipalities and before that, hospitals. She has seen first-hand how special needs programs have evolved over time.

“What I see is a good balance and it gives parents the option. It gives individuals with a disability an option to choose, which is what we all want, we want to have our choice. Especially in recreation and leisure,” she said.

Scottsdale residents spend time coloring and playing games at the Adaptive Services building. (Independent Newsmedia/Melissa Fittro)

According to Autism Speaks, autism or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. There is not one autism but many types, caused by different combinations of genetic and environmental influences, the website states.

For ASD — autism spectrum disorder — Ms. Zuppan says Arizona is one of the top states with the most people identified on the spectrum.

There is no identified cause of being on the spectrum, but Ms. Zuppan believes a combination of genetics, environment and food may contribute to ASD.

“Last summer, for instance, out of 40 of our summer camp participants, we had two females and 90 percent were on the spectrum,” she explained. “So it falls right in line with the male-to-female ratio, and how quickly it has escalated.”

CDC estimates autism’s prevalence is 1 in 68 children in the United States, with 1 in 42 boys and 1 in 189 girls.

Scottsdale’s adaptive services department evaluates their long-and short-term plans often because of rapidly evolving needs in the community, Ms. Zuppan says.

Another demographic especially essential to Scottsdale: “We pull in a lot of seniors and retirees,” she said of an increasing aging population.

Ms. Zuppan says that as the population ages, so does the amount of adult children.

”It’s a big stresser for our senior, or getting to retirement-aged, citizens if they have a child and they’re also getting to that age,” she said. “They’re having to plan for their retirement but they’re also having to figure out ‘what do we do with Bob, our child, who is also going to be 60 in three years?’”

Bringing back the oldies

Cactus Shadows High School teachers Dr. Janelle Perrin and Haley Vago co-teach adaptive physical education and dance classes comprised of special needs students and general education peers.

A part of the Cave Creek Unified School District, Cactus Shadows partially serves students in north Scottsdale, and is located in the town of Cave Creek at 5802 E. Dove Valley Road.

Janelle Perrin

“The class was started as part of a Youth Activation Movement within Special Olympics Arizona to provide more opportunities for students with special needs to be included in their school communities,” Dr. Perrin explained of the PE class’s start five years ago.

“The impact of this class is that the learning can be seen well beyond the classroom, supporting an improved school climate and culture helping students be recognized for their abilities rather than their disabilities.”

Dr. Perrin says her class is a sport and education-based program that increases both athletic and leadership opportunities for students with and without disabilities.

“Within the class, general education peers work alongside students with special needs, taking time to support teaching and learning,” she said.

“Because of the impact of this class, the school administration has been supportive of more opportunities for classes that support an inclusive setting. This year, CSHS has offered an Adaptive Dance class, taught by Ms. Haley Vago.”

Using visual imagery, the class helps students with special needs be able to participate in dance.

“Visual imagery is huge in helping students understand certain concepts,” Ms. Vago explained.

“I love giving the students a visual of something they already know so that they can relate better to the skills or concepts.”

For example, Ms. Vago says, she recalls playing a cowgirl on her hobby horse as a child, and mimics the action to relate it to a dance move.

Haley Vago

“I show them some videos just in case they are not familiar with a hobby horse and then we do chassès in a circle or across the floor as if we were riding our hobby horses,” Ms. Vago said.

“The students not only have a good time pretending to ride their horses, but they also learn how to do the skill and can now easily remember what the skill is because they have now connected in their brains that a chassè is when they ride their horse.”

Ms. Vago has 10 adaptive students and seven peer tutors that have taken dance at the school. Ideally, she would like to have a one-on-one student to peer class.

“I have never worked with special education students, and it has been one of the greatest blessings in my life,” Ms. Vago said. “I went into this year with no expectations of how the students would react to the skills or units, and I have been pleasantly surprised and inspired at how much they can do and remember.

I am so happy to give every student on this campus the opportunity to learn how to dance.”

Dr. Perrin says one of the favorite activities in her PE class is a day where they “bring back the oldies.”

“We take a day and play some of the old games or activities they once played when they were kids,” she said. “It brings a lot of smiles and laughter as students go down memory lane as they are participating.”

Music therapy, a service offered at GiGi’s Playhouse. (submitted photo)

A fighting chance

GiGi’s Playhouse is a one-of-a-kind Down syndrome achievement center offering over 30 social, education, therapeutic and career development programs for free to participants and families from pre-natal diagnosis through adulthood. The playhouses are 99 percent volunteer, with only one paid position.

The Scottsdale location opened Feb. 14, 2015, and is one of 37 international playhouses.

Jennifer Gage

Jennifer Gage, founder and president of GiGi’s Playhouse Scottsdale/Phoenix, says she has seen first-hand how GiGi’s programs benefit participants.

“I have watched my own daughter Kaitlyn — 21 years old — gain confidence, learn to read beyond a third-grade level, forge meaningful friendships and imagine the possibilities of independence,” she said.

Chelsea Molanick, mother to 3-year-old Reagan, says GiGi’s Playhouse gave her reassurance when she found out her to-be-born child would have Down syndrome.

“I want new parents to not be afraid of the unknown. When I first found out about Reags having Down syndrome, I was scared because I was not given any information. I did not know about Down Syndrome but it was the AZ Down Syndrome Network and GiGis Playhouse that reassured me that everything was going to be OK,” Ms. Molanick said of the Scottsdale playhouse.

Ms. Molanick recalled a time when she spoke to another expecting mother who feared her child might not be able to say “I love you.”

“I tried to reassure her that he will,” she said. “Whether its in words or sign language, he will. Reags signs ‘I love you’ all of the time, which in my mind is just as meaningful as in words.”

This past year GiGi’s piloted an Amina Grace Speech and Language program.

“So many children fall through the cracks or experience gaps and don’t receive adequate therapies. GiGi’s provides weekly speech therapy for free,” she said.

Additionally, the playhouse offers people with Down syndrome an area to strengthen their muscles due to a common side effect called hypotonia, or low muscle tone.

“Hypotonia affects everything from swallowing, speaking, walking and writing. Muscles need to be strengthened through physical therapy as well as fitness,” she said. “Therefore fitness and physical activity programs are an essential part of what we do at GiGi’s at every age and every stage.”

Ms. Gage says the playhouse wants families to know they are never alone.

“From a prenatal diagnosis to career skills, we make a lifetime commitment to remain by their side. Families are empowered with all the tools their child needs to succeed,” she explained.

Ms. Gage says the misconceptions surrounding Down syndrome diagnosis are rooted in the belief that people with the syndrome can’t do what typical peers can do.

“There really are no limitations, they just need the opportunities to prove it,” she said. “With an 80-85 percent termination rate: much work remains to give babies a fighting chance for life, love and happiness,” she said.

Northeast Valley News Editor Melissa Rosequist can be e-mailed at mrosequist@newszap.com or can be followed on Twitter at twitter.com/mrosequist_.

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