Invisible no more: Families discuss love, hopes, and fears about their children with disabilities

Chet Stofman and mom Carol Tabas

“Invisible No More” is an online gallery of people with intellectual and developmental disabilities – and a little bit about who they are, from those who love them most. This gallery will be updated on an ongoing basis.

In early December, columnist Ronnie Polaneczky published a four-part series called “Falling off the Cliff” about the challenges that families face as their children with intellectual and developmental disabilities age into adulthood and  beyond. Reader response has been so overwhelming that families with disabled loved ones have said of the series, “We’re no longer invisible.”

The mission of “Invisible No More” is to keep that momentum going. Tell us about your disabled loved one: name, age, the nature of his or her disability, where they live, a short bio, and your hopes and fears for them. Please include your own name and phone number, then email your submission to Ronnie Polaneczky at polaner@phillynews.com with the subject line “Invisible No More.” Submissions may be edited for brevity and/or clarity and may also run in the Inquirer and Daily News.

ALEX LEE

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Alex Lee with sister Isabelle

Age: 10

Diagnosis: Down syndrome

Lives in: King of Prussia

About Alex: “I almost feel like Alex exists just to prove everything that I knew about Down syndrome wrong!” says his mom, Cecelia Lee. “He loves music, everything from Hamilton to Mozart.  He speaks, reads and writes in English and Korean and is studying Italian to sing opera better.  He has a glowing personality, and an inexplicable way of making everyone feel better, almost like giving everyone the hope that somehow he’ll make this world a better place for many people.”

Hopes and fears: “For some people with disabilities, when their parents die they’re left with siblings who don’t even know what diagnosis they have.  My husband and I want to make sure that never happens so we have both Alex and his sister [Isabelle, 12] take part in our advocacy work for people with disabilities. They travel with us to conferences and even do presentations on their own.  Alex introduces himself and sings an aria from Don Giovanni and then Isabelle then shares our advocacy journey. I’m excited to think about Alex’s future — planning together what to study in college and what field he might enjoy working in, just like we do with his sister and what amazing opportunities would come and surprise us along the way.”

STACY BYERS

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Stacy Byers

 

Age: 32

Diagnosis: Brain injury, epilepsy, learning disabilities, anxiety, essential tremor

Lives in: Pitman, N.J.

About Stacy: “She has been a warrior since birth,” says her dad, Pete Byers. “She has many limitations, but she’s a very loving person and says she’s happy. She has a passion for Harry Potter, WWE, family bowling every Saturday, taking care of her cats, and being a member of the Gloucester County Community Chorus. We’re proud of her resilience despite numerous physical, emotional and social setbacks, including being teased and bullied at school.”

Hopes and fears:  “We hope that she meets someone who will provide her love, companionship and friendship. We worry because her anxiety greatly impedes her ability to interact with the outside world and it gets worse as time goes on. [This is one of the last pictures Stacy has posed for, in 2015.] Will she be able to cope once my wife and I are gone?”

GRAYNLE EDWARDS

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Graynle Edwards with mom Verna Edwards

Age: 56

Diagnosis: Intellectual disability, nonverbal

Lives in: Chestnut Hill

About Graynle: “Graynle loves people, and he loves pretty ladies,” laughs his mother, Verna. “He loves talking to people, even if they can’t understand what he is saying; but he understands everything. He loves sports – his father takes him to basketball and football games – and he loved seeing the Mummers Parade on New Year’s Day. He loves to dance and he will listen to anything, but his favorite is jazz. He has dozens of LPs and CDs and really enjoys hearing live music at LaRose Jazz Club [in Germantown]. He loves going to restaurants, and if you don’t keep snack food on a high shelf, he’ll dive right into it! When I take him shopping, I’ll hear all these people saying, ‘Hi!’ That’s because he’s busy waving and smiling at everyone. He’s a very happy guy and truly delightful company.”

Hopes and fears: “I hope Graynle will always be happy and healthy – he is prediabetic and has asthma. My fear is that his dad and I will leave this world before Graynle does, or that the situation we work out for him won’t end up being right for him.”

R.J. THOMAS

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R.J. Thomas

Age: 58

Diagnosis: Brain damage as a result of high-forceps delivery

Lives in: Fairfax, Va.

About R.J.: “As you can see in this photo, R.J. has a copy of the Washington Post’s TV guide,” says R.J.’s sister, Mary Thomas. “It is his security blanket from both tactile and schedule perspectives. It’s how we knew that he could read. R.J. likes to watch TV, go to the movies, eat at Olive Garden and drink Diet Coke, particularly from McDonald’s. He has overcome the obstacle of having his fingernails trimmed. I began taking him to a local nail salon and now he knows the drill. It is amusing and heartening to watch him sit down and put a hand out for the manicurist.”

Hopes and fears: “My hope for him is that the staff at his group home will pick up on his nonverbal cues. My fear is that as he ages and becomes more incontinent he will be left to sit in his own waste.”

 

JULIAN GREEN

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Julian Green

Age: 17

Diagnosis: Autism

Lives in: Philadelphia

About Julian: “Julian is a fun teenager who can be precocious in spite of being on the autism spectrum,” says his father, Philadelphia City Councilman-at-Large Derek Green. “From an early age, he has loved art and once he starts a project does not want to stop until it’s finished. At Houston Elementary School, his art was included in a mural for the Mount Airy Arts Garage. He loves school and truly enjoys math. In fact, he wants to do math even on vacation. Outside of school, he plays soccer and loves to dance to pop music. He named our dog Ms. Jagger after the Maroon 5 song ‘Moves Like Jagger.’ As Julian has gotten older, he has been able to overcome anxieties that once challenged him. His perseverance makes us so proud of him. He will not be defeated by autism or false expectations.”

Hopes and dreams: “Our biggest hope is that Julian can live a full and rewarding life. We hope that he can continue his education and that college could one day be an option. Our biggest fear is for his safety and that someone would act out against him or misunderstand him because of his disability.”

CHET STOFMAN 

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Chet Stofman and mom Carol Tabas

Age: 34

Diagnosis: Cerebral palsy, developmental delays, seizure disorder

Lives in: Pittsburgh

About Chet: “My son loves being a part of life,” says mom Carol Tabas. “He is so happy to be included and have a purpose to get up in the morning. He wants to have a full day. He wants to be surrounded by people, activities, good food and conversation. He wants to know how his favorite teams played, what the weather is like and what’s going on around him; no negative or scary news, please.”

Hopes and fears: “My biggest hope is that Chet’s life will be shared with a community of people that want him to be a part of their lives. Because he is nonverbal and medically fragile, my biggest fear is that he will outlive me and be cared for by people who do not know him and will not be able to to assess his needs and wants.”

WENDY ROMANO

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Wendy Romano

Age: 22

Diagnosis: Down syndrome

Lives in: Wayne

About Wendy: “Wendy is a Radnor High School alum and their biggest team fan,” says her dad, Joseph Romano. “She now works part time at two jobs in women’s retail fashion, which she loves. She does volunteer work for the elderly, loves baking, socializing with friends and, most of all, performing on stage: Musicals, plays, singing and dancing are her greatest passions.  Every day she makes us proud.  She is hardworking, compassionate, funny, fearless and loves time with family and friends.”

Hopes and fears: “Our hopes for her are the same as any parent’s – a happy, healthy life surrounded by people who love her.  Our only worry is for her happiness and health after we are gone.  But Wendy is a teacher, and from her we learned how much good there is in the world, which gives us faith in her future!”

KATIE ROBERSON

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Katie Roberson

Age: 26

Diagnosis: Significant intellectual disabilities, seizures

Lives in: Philadelphia

About Katie: “For Katie, it’s always been about connecting with people at the most fundamental level,” says her mother, Kathy Roberson.  “She can’t easily express herself, but she’s quick at picking up on facial expressions, body language, even a quiet sigh, and will immediately pat someone on their back and say, ‘It’s okay, don’t worry.’ We were walking down the street one day, and a woman came up to us asking for money.  As I reached for my purse, I let go of Katie’s hand, and without hesitating she walked over to the woman and hugged her.  Not tentatively, not holding back because the woman’s clothes and face were dirty, just an all-out, arms-holding-her-close hug.  For a split second the woman looked startled, but then her face broke into a wide smile, and she hugged Katie back. These are the moments with Katie that make me look at the world, and myself, differently, and fill me with gratitude that she is my daughter.”

Hope and fears: “I want her to be happy, to have people in her life who truly know her, who love and value her for who she is, and who are committed to figuring out how to handle the hard, complex challenges as they arise.  The specifics of what that means, and how we will make that happen for her once we can’t do it anymore, is what keeps me up at night, tossing and turning with a visceral, aching fear.”

BILLY ENGLE

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Billy Engle with dad Bill Sr.

Age: 47

Diagnosis: Intellectually disabled with apraxia due to cerebral palsy

Lives in: Warrington

About Billy: “Billy is the oldest of our three children, and he loves family get-togethers and socializing with friends on Monday nights – some of whom he has known since he was three years old. Music has always been a huge part of Billy’s life, especially the oldies, and he loves to line-dance – he’s always the life of a party! He has struggled with the high turnover among the staff who take care of him. He will establish a good relationship with someone who then leaves the profession because they can’t survive on the low salary that they are paid. This causes Billy sadness and anxiety; he wonders if he did something wrong. He’s very compassionate and loves to be helpful: He has on more than one occasion, while outside of our house, come running in to alert us that a neighbor was in trouble and needed help. He would watch over young children in our neighborhood and warn them of cars approaching or would get their moms to let them know a little one was going toward the street when they shouldn’t. He also loves funny jokes, acting silly and having practical jokes played on him – and then playing a joke on them.”

Hopes and fears: “Our biggest hope for Billy is to be surrounded by those who love him, and to ‘dance and sing’ his way through life until God invites him to dance and sing in heaven. We worry what will happen to Billy when we’re gone. What about the ‘sick’ people who prey on the ID population? He can’t speak up to tell anyone if he is being mistreated.”

PETER RUGGIERO

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Peter Ruggiero

Age: 5

Disability: Cerebral palsy with spastic diplegia and speech delay

Lives in: Hummelstown, Pa.

About Peter: “I am so proud of my son – he is tough!” says mom Laura Ruggiero. “He falls so many times a day, but picks himself up and plows on ahead.  He has skinned his knees but waved off help.

He has been riding at Capital Area Therapeutic Riding Association (CATRA) for two years and can do over 20 sit-ups while riding on a horse. He loves playing with cars and trains.  Although he has a speech delay, he can clearly enunciate the word  Lamborghini and makes great sports-car sounds. He has a natural talent of feeling a beat and rocking out. He can cook and can crack eggs on his own.  Brownies are his favorite because they involve the mixer and licking the bowl clean.”

Hopes and fears: “Living with CP has helped to make Peter strong, patient, and kind, and I hope his character will further build and inspire others. I fear that Peter will learn to think of himself only in terms of his disabilities and will limit himself.”

JAKE CARR 

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Jake Carr (top, center) with (clockwise from right) dad Joe, sisters Olivia and Abby and mom Trisha.

AGE: 17

Diagnosis: Autism, epilepsy, intellectual disability

Lives in: Aston

About Jake: “Jake is a master of transportation, liking car rides, motorcycle rides, airplane rides and soon-to-be helicopter rides (one of his Christmas gifts),” says his mom, Trisha. “He attends Devereux CARES in Downingtown and he enjoys bowling at MacDade Bowl Autism Spectrum League with his friends Robbie and Taron.  He likes to bounce, hop, skip and jump as if it’s a workout. He has limited verbal ability and can get frustrated when unable to communicate. He is loved by his sisters, Olivia and Abby (and of course, Mommy and Daddy) and a big extended family.”

Hopes and Fears:  “I hope that Jake is and will be happy. That’s a basic hope for any parent to have for their child.  When they’re unable to communicate, it can be challenging to assess.  I also hope that when the day comes when my husband and I can’t take care of him, that he will be safe and happy.  My fear would be that he’s unhappy and can’t communicate that;  I fear that someone would hurt him. I fear for what happens when my husband and I die.  We joke that we can’t die.  A lot of people in our situation say that.”

JORDYN DANNENBAUM 

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Jordyn Dannenbaum

Age: 25

Disability: Down syndrome

Lives in: Bryn Mawr

About Jordyn: “We are proud of everything that Jordyn has accomplished,” says her mom, Cindy Dannenbaum. “She went through our local public schools and then attended the LIFE program at George Mason University in Fairfax, Va., for four years. Jordyn is independent, warm, caring, and funny — a great daughter, sister, cousin, and friend. She volunteers one day a week, works in a restaurant three days a week, and loves seeing movies and Broadway shows, listening to music, and dancing.”

Hopes and fears: “Our biggest hope for Jordyn is that she continues to be happy, live a productive life, and be surrounded by family and friends. Our biggest fear is for her to be alone.”

RYAN MEHNERT

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Ryan Mehnert with brother Kyle and sister-in-law Aimee.

Age: 28, when he died last year from an unexpected reaction to an antibiotic

Disability: Cerebral palsy, epilepsy, hydrocephalus, and other conditions

Lived in: Carrollton, Texas

About Ryan: “He loved to laugh and he loved to have the people around him laughing as well.  He had a streak of mischief in him,” says dad Rob Mehnert. “He loved to ‘hide’ his teacher’s trash can from her — it was a great game they played. He was a music fan — he went through portable CD players/headphones like they were water; he had a wide variety of musical tastes, but he had a core group of about 20 CDs he would listen to every single day (this explains why we had him wear headphones — nothing like listening to Amy Grant singing Christmas music in Texas in July). I loved Ryan’s zest for life, his ability to smile even when times were tough, and his desire for everyone around him to be happy.”

Hopes and fears: “Our biggest hope is that Ryan is waiting for us in heaven. Our biggest fear was that someone would target him for abuse; the fact that he was nonverbal would have made him an easy target for a predator.”

JIM  [last name withheld at his family’s request]

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James, brother of Mary Gough

Age: 70

Disability: Profoundly disabled due to a skull fracture from a high-forceps delivery.

Lives in: Bucks County

About Jim: “Jim is nonverbal and medically fragile with COPD, seizure disorder, has a permanent tracheotomy and enteral feeding tube,” says his sister, Mary Gough. “Dispute his medical conditions he remains in stable health due to the excellent care he received at Hamburg for more than 50 years [Hamburg, a state-run institution, recently closed; Jim now lives in a group home]. Jim shows happiness in his surroundings by smiling at his caretakers and family visitors. He particularly likes being bathed, listening to music, and rides on the bus.”

Hopes and fears: “We have been fortunate and remain ever grateful for the care Jim received at Hamburg. We are lucky that we found a good fit for this next stage of his life. But this was not an easy process. We were extremely disheartened by the dismal and depressing group homes that we visited [when Hamburg closed]. We also were alarmed by how few options exist for the aging population of severely disabled people who have medical issues that require on-site nursing staff.”

KHOA DO

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Khoa Do with his sister Trang.

Age: 29

Disability: Severe mental delays and seizures caused by encephalopathy

Lives in: Frankford

About Khoa: “He’s the heart and soul of my family,” says his sister Trang Do, a reporter for CBS3. “He is the youngest of seven siblings, so we are all extremely protective of him. Everyone who meets him falls in love with him because he is always smiling and giving high-fives. His favorite activity is eating! Recently, he has started to display self-harming behavior, which is deeply troubling to us.”

Hopes and fears: “ My greatest fear is that Khoa will seriously hurt himself to the point where we will be unable to stop him. I’m so proud that, despite his diagnosis, he knows how to help us care for him, Whether it be maneuvering his body to allow us to change his diaper or letting us know what he would like to eat or drink. He is my reminder every day that life is a gift that is not to be wasted.”

PATRICK COUGHLIN

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James and Kelly Coughlin with son Patrick.

Age: 9 months

Disability: Down syndrome

Lives in: Eagleville

About Patrick: “What can my wife, Kelly, and I say about Patrick that his beautiful pictures can’t?” says dad James Coughlin. “His smile and laugh light up a room. He is extremely inquisitive, he wants to see and touch everything around him. He is quite a hard worker — he puts his best effort into all his therapies. He loves people, he wants to be always held and cuddled. He studies faces and tries to mimic their expressions and sounds. He LOVES playing with his doggies and being outdoors. He has a fondness for music and seems to enjoy everything from classical to American standards, pop, rock, hip-hop, and everything in between. He now loves to dance.”

Hopes and fears: “Our biggest hope is that Patrick knows he is loved and supported, that he fulfills whatever life he is destined to have and whatever lifestyle he is capable of living, in whatever capacity he chooses and that the opportunity for him to do so is ever present. Our biggest fears for Patrick start with ‘Are we able to do enough?’ Do people realize he has the same capabilities as other children; he just needs extra support? What if we aren’t around or able to support him when he’s an adult and we as a society haven’t evolved to support individuals with disabilities in a proper fashion?”

DINA GREER

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Dina Greer with her aunt and guardian, Earni Young.

Age: 48

Disability: Cerebral palsy, intellectual impairments

Lives in: Mount Airy

About Dina: “She’s one of the most loving, happy people you’ll ever meet,” says Earni Young, her aunt and guardian. “Her life has been one long obstacle, but she pushes through. She has the memory of an elephant and is very good with technical things, like programming the VCR, but has no sense of time. If you tell her she’s going somewhere next week, she thinks it means ‘now.’ She loves soap operas, especially The Young and the Restless, and Wii bowling, and is learning how to use a touchscreen notepad, even though her hand and eye coordination is not very good. I am proud of her positive attitude. If other people had to deal with what she deals with, they’d be a witch on wheels.”

Hopes and fears: “Dina will always have to rely on the kindness of strangers, and I just hope she finds some very kind strangers. My fear is that things won’t get better for her [Dina’s group home was recently taken over by a new service provider after the state pulled the license on the prior agency; the transition has been painful and unsettling]. I once had to sue the state to get Dina the services she needed. If I have to sue again, I will, even if it takes all the money I have.”

ELISE WESTCOTT

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Elise Westcott with mother Maureen.

Age: 32

Disability: Intellectually disabled

Lives in: Lancaster

About Elise: “If I was not Elise Westcott’s mother, she would be someone I would want to know and hang out with,” says her mom, Maureen Westcott. “She is witty, empathic, insightful, and up to date on social and political happenings. She is a strong woman who comes from a family of strong women; and has overcome major obstacles in her life like the death of her father at a young age, medical setbacks (including cancer), and the ups and downs of trying to be independent.”

Hopes and dreams: “I want her to find her own way and decide what she wants from life, like where to live and work. I want a system that supports her needs, but I don’t want her thinking that the system is the only answer to life’s challenges. I want her to think of herself as ‘a person,’ not ‘a person with a disability.’ ”

ALEX NEBHUT

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Alex Nebhut

Age: 30 

Disability: Cerebral palsy and intellectual disability

Lives in: Aston

About Alex: “He enjoys listening to music, spending time with his older brothers, going to his day program, horseback riding, visiting family friends, and attending our annual reunion of families who adopted children from India,” says mom Carole Nebhut. “He also likes tagging along with me — a die-hard Laura Ingalls Wilder fan — to the Midwest prairies each summer. Alex is a very brave young man, having survived life in two Kolkata orphanages and a disrupted adoption in California before coming home to his family in Pennsylvania at age 6. He dealt with numerous orthopedic surgeries and years of difficult physical therapy so that he could master walking, and running, with a walker.”

Hopes and fears: “I’m not fearful about Alex’s future when I’m no longer around to take care of him,” says Carole. “His oldest brother has promised to assume that role when the time comes. What I fear is the loss of Medicaid, which will bring all of Alex’s services and supports to a screeching halt and make all that he has worked for meaningless.”

 

People are more than their disabilities. Tell us your loved one’s age, the nature of his or disability, where they live, a short bio, and your hopes and fears for them. Please include your own name and phone number, then email your submission to polaner@phillynews.com with the subject line “Invisible No More.” Submissions may be edited for brevity and/or clarity and may also run in the Inquirer and Daily News.

Read “Falling Off the Cliff,” Ronnie Polaneczky’s four-part series on adults with intellectual and developmental disabilities and the challenges their families face.