Parent Pioneers Paving the Way for Future Generations

Parents Helping Parents of Children with Autism and Asperger’s

BY JACKIE PANTALIANO

Not too long ago, parents of children on the autism spectrum found themselves in an autism/Asperger’s wilderness. While creating paths to solutions for their now-adult children, they became the trailblazers for the parents coming behind them. But while recognition and services have vastly improved, we still have miles to go. These issues are personally significant, as my own son Steven, an 18-year-old with Asperger’s, enters adulthood.

Typically, individuals with Asperger’s are challenged with social inappropriateness, obsessive interests, sensory issues and delayed maturity. According to the ASPEN (Asperger’s Syndrome Education Network) website, Asperger’s is on the high end of the autism spectrum, and was not officially diagnosed in the US until 1994.

“Aspies,” as many adults with the disorder refer to themselves, are often seen as “quirky, nerdy or geeky.” Unable to recognize social cues, they often come across as rude or strange. (Think “Sheldon” from TV’s The Big Bang Theory.)

THE DARK AGES OF THE 80S: THE CONRAD FAMILY

MICHAEL CONRAD

When Molly and Martin Conrad of Cherry Hill brought home their baby boy Michael in 1978, the Asperger’s diagnosis would not exist in the US for another 16 years.

At 8 years old, Michael was diagnosed with Attention Deficit Disorder (ADD). Many Asperger’s individuals share ADD traits, but as they grow, it becomes apparent that their challenges and delays differ from those of their ADD peers. Even after the Asperger’s diagnosis came out, there were many misunderstandings. A representative with the NJ Society of Learning Disabilities initially told Molly, “Michael can’t have Asperger’s—he doesn’t talk in monotone.” But it is now recognized that a person need not meet every criterion on the list to be diagnosed.

Molly took 8-year-old Michael to a therapist and social skills group, and around the time he graduated high school, she’d read an article about Asperger’s and thought it described him perfectly. Her developmental pediatrician told her that she didn’t need a diagnosis, but Molly said, “This isn’t true. The diagnosis justifies services.”

She’d managed to get him into early intervention, and he was
mainstreamed with typical children from preschool on, bolstered
by a variety of resource room pull-outs and private tutors. But
when it came to college, trouble began anew.

As is typical of Aspies without support, he struggled with the independence of attending classes and activities of daily living. Molly and Martin hired graduate students to work with him, and he eventually graduated from Broward Community College in Florida. Since then, Michael has struggled with living arrangements, never able to tolerate roommates or find paid work. His love has always been theater, and he now volunteers at Off-Off-Broadway venues.

Molly has always felt it important that Michael live away from home, both to gain independence and prepare him for the time when she and Martin will no longer be around. But financially, it has been a great hardship. He now lives in a supervised apartment building. He continues with theater involvement and library visits, typically reading 6 books at a time.

Molly, who said she has “spent most of her time since Michael was born fighting for services,” is now very involved with Autism NJ and ASPEN where she derives support and paves the way for others. One of her biggest concerns is the lack of employment for Aspies. While some of us know of famous Asperger’s individuals with great jobs, statistics show that up to 85% of this population is without fulltime employment, though many have above-average intelligence.

IT’S ALL ABOUT AWARENESS: THE HUMANS FAMILY

JACKIE & NIKKI HUMANS

Jackie Humans, PhD has carved a career out of awareness. She lectures about bullying prevention, sexual harassment and child abuse. She authored a children’s book entitled “15 Ways to Zap a Bully,” illustrated by her 25-year-old daughter Nikki, who has Asperger’s. A bullying victim, Nikki was one of the inspirations behind Jackie’s book and speaking career.

Jackie and Nikki live on Long Island, NY, and didn’t receive the Asperger’s diagnosis until Nikki was entering ninth grade. However, “at the end of second grade in public school, a very brave teacher told me and my husband that our daughter did not belong there,” said Jackie. So the Humans put Nikki in private school for third grade, where she was one of only 8 students in class. “That year, Nikki grew 4 inches and I’m convinced it was because public school had been so traumatizing that it stunted her growth.” Nikki remained in that school until its final eighth grade year. She attended and graduated from a mainstream high school, and then went on to college, graduating with a Bachelor of Fine Arts degree.

Since then, Nikki has not been able to find full-time work. She does occasional freelance artwork, but often goes many months between commissions. She now volunteers for an animal-assisted therapy program with Jackie and the Humans’ dog, Jessie. “Volunteering helps Nikki feel useful and assists in developing a work history of being on time and responsible,” said Jackie.

“Having Nikki illustrate my book was an integral part of my publishing goal. I knew she could do a great job and felt it was especially fitting because she had developed techniques of her own that would often stymie verbal bullies. Once she could be dispassionate, she began to almost ‘toy’ with the bullies by refusing to give them an upset reaction,” said Jackie.

“I encourage other parents to start businesses or joint projects with their special needs children because no one is ever going to be more motivated to help our kids than we are.”

TACKLING EMPLOYMENT HEAD-ON: THE RITZEL FAMILY

ALEC RITZEL

Linda and Joe Ritzel of Marlton are the parents of Alec. They launched Pride Paws in 2010—a non-profit, pet supply retail store at 206 Main Street in Medford— where they train and employ adults with developmental disabilities.

“We just need to give these participants an area to build some skills and confidence,” said Linda. Twenty-one-yearold Alec is currently in his final year at Cherokee High School in Marlton. Many people are unaware that the law allows public school education for special needs children until they are 21.

Alec was diagnosed on the spectrum at 3. His education started with several specialized, out-of-district school placements. He came back into the district in a self-contained elementary school classroom and went on to mainstream middle and high school. Linda credits his teachers for sparking Alec’s passion for photography and video.

Linda, who had no role models when Alec was diagnosed, says “My dream for him is in and around his two passions: camera crew and the Phillies. Somehow, somewhere, there is something there for him! Alec loves baseball and is a walking encyclopedia on the game!

“As far as Pride Paws, we know it’s tough out there, so we are here to teach skills, help overcome confidence issues and unlock potential.”

Responsibilities include: baking pet treats and packaging them, crafting and painting other merchandise, taking inventory, keeping the shop clean, helping customers and operating the cash register. “Our register has a training mode which helps overcome the fear of ringing a register and teaches math skills.” Alec has even found a way to use his talent. He takes photos which are used in the store and on Pride Paws’ website.

Linda’s advice: “Find a way to never give up. These kids have fantastic brains. Give them many opportunities. They can guide you to be better parents and better people with a different world view.”

BLAZING A RECREATIONAL TRAIL: THE NEWMAN FAMILY

THE NEWMAN FAMILY

Linda and Eric Newman have two sons—Max, an 18 year old with classic autism, and Harrison, 15 and neurotypical (not on the spectrum). Max was typically developing as an infant and then regressed. “There is so much more out there now than when Max was little,” said Eric. “We didn’t know any other parents who had a child with autism then.”

Linda and Eric were tireless in pursuing every form of early intervention possible, spending years searching for the best schools for Max at the various stages of his development. When they lived in Philadelphia, there weren’t enough autism programs, so they relocated to Voorhees and Max entered a variety of out-of-district placements. He’s now in-district at Eastern High School.

“Our goal is to have Max be a functioning, contributing part of society,” said Linda. Whether that means Max will live in a supervised home with others on the spectrum, or the Newmans will retire somewhere and open a luncheonette in a small town where everyone knows them and they can keep Max employed, remains to be seen.

Three years ago, they started a special needs basketball league, simply because Max wanted to play, and there was no existing place for him to do so. “We’re a trailblazing family,” said Linda. “If we can’t find it, we’ll develop it.” To that end, the Newmans also head up the DuBrow special needs chapter of BBYO (B’nai Brith Youth Organization), a Jewish youth community service, leadership and social organization. Neurotypical teens participate and mentor, including Harrison.

Said Jackie Humans, “My vision for the future is for Nikki and me to go on a speaking tour.”

Michael Conrad’s dream is to “live in his own apartment and have a paid job,” said Molly. “He doesn’t understand why he can’t.” At 33, he’s just starting to think he may want a girlfriend (not atypical timing for an individual with a developmental delay). “I’d love for him to marry,” she adds with a smile. g

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Jackie Pantaliano is a freelance writer and owner of ImPRessions, LLC in Voorhees (www.impressionspr.net), a national PR firm. She is the former 4-year leader of the Camden/Burlington County Chapter of ASPEN, the proud mom of Steven, stepmom to three adults, dog mom to two pooches, and wife of Bob for 22 years. She can be reached at jackiep@impressionspr.net.

[ LEARN MORE ABOUT IT ]

FOR PARENTS:
PRIDE PAWS www.prideventuresinc.org

ASPEN www.aspennj.org

SOUTH JERSEY CHAPTER OF AUTISM SOCIETY OF AMERICA www.solvingthepuzzle.org

FOR ASPIES:
ADULT ASPEN SOCIAL GROUP IN SOUTH JERSEY, info@aspennj.org
NATIONAL ONLINE NETWORK FOR THOSE ON THE SPECTRUM www.wrongplanet.net
GRASP (GLOBAL AND REGIONAL ASPERGER’S SYNDROME PARTNERSHIP) www.grasp.org

For more information about South Jersey special needs social groups and activities contact the author at jackiepr@verizon.net.