His name is Rob DiMarco, and he’s on The Arc’s Board. We talked to him recently as part of our Meet the Boards series, and learned about how his background in software and Web development brought him to The Arc.
Take a listen to hear him tell the story of when he met Paul Stengle, our Executive Director, and found out The Arc was in need of a tech guy to work on its Web site and blog. Rob proved to be the man, and now he’s the go-to source for anything tech.
Also hear Rob explain what it means to be a part of The Arc’s board, and why he thinks education is probably the biggest challenge facing developmentally disabled children.
There’s no denying the importance and value of education when it comes to raising a child with developmental disabilities. Parents should know what resources are available to them so that they can best support their child. They should be familiar with laws and policies surrounding access to care.
But for many parents — especially those who’ve never raised a disabled child before — getting this knowledge and education can be difficult. They’re left in the dark about services and programs that might greatly benefit them and their child.
We shed light on some of these resources when we talked to Arc board member Cat West as part of our Meet the Boards series. Our podcast is above for you to listen in.
You might recognize Cat as the host of Building Bridges in the Community, The Arc’s show on BCTV. In our podcast, Cat tells the story of her son Joey, who was born with Down syndrome. She reflects on the moment when she learned Joey had Down syndrome, and the emotional roller coaster she and her family went through. She explains the next steps she took to begin caring for Joey and managing his condition.
Then two year later, things became worse. Joey was diagnosed with autism. That’s when Cat became involved with The Arc. The organization provided Joey with autism therapy, which proved to be very successful. She says The Arc helped her learn so much about managing both autism and Down syndrome, and pointed her to the resources she needed to get educated.
Take a listen and learn more about resources you might not realize are available to you. Education can take away much of the anxiety in raising a developmentally disabled child, and it’s important to continue learning about new aids out there. Oh, and don’t mind the sounds of her children and dogs in the background! ;)
That was the theme of my podcast interview with Ed Sickles, one of The Arc’s board members. I talked to him recently as part of our Meet the Boards series. You can listen to our conversation here:
Ed has been involved with The Arc and helping the disabled since he was 15. That was about 40 years ago. He was a student at Abington High School, and started a recreational program for special needs students.
Listen as he tells the story of why he became so passionate about the disabled at an early age, and how he’s turned that passion into his life’s work. Ed is now a teacher at Upper Perkiomen High School in Pennsburg. Most of his students have minimal disablities.
Ed is also a service adviser for various programs at the school and in the local community that support special needs children and adults.
And his deep commitment of course extends to The Arc, where he’s served as a board member for 30 years. He spends time with the advocacy, parent, and foundation boards. Ed is also the legal guardian to a man with Down syndrome.
He is an inspiration to anyone who wants to help the developmentally disabled live better, fulfilling lives. In our interview, Ed drills down into what he thinks is the No. 1 reason preventing the developmentally disabled from achieving respect and equality. He also talks about how unfortunate financial circumstances have added to their struggle.
While Ed is concerned for the future of the developmentally disabled, he is still hopeful. He shares his perspective on how to we can create and take better advantage of educational opportunities to provide a higher quality of life to the disabled.
If you’re looking for some meaninful, low-cost ways to get involved, Ed offers some suggestions, and explains how we can help the community understand that disabled or not, we’re all the same and deserve the same opportunites in life.
You might be hard-pressed to find someone who wants to adopt a special needs child. But then again, maybe you haven’t met Tanis Miller.
She’s a stay-at-home mommy blogger from Alberta, Canada. She’s an advocate for children with disabilities, and has been chronicling her crusade to adopt a special needs child on her blog, Attack of the Redneck Mommy.
The story behind it all is the subject of my podcast interview with Tanis. You can listen to it below.
Tanis and her husband have three children. Two, a daughter and a son, are with them on Earth today. The third, Shale, passed away three years ago, just before his fifth birthday.
Shale was born with multiple disabilities and illnesses. His primary condition was facial and chest paralysis. He was also very developmentally delayed, and had club feet and a cleft palate.
Tanis and her husband learned of Shale’s disabilities when he was delivered. That was when doctors began making diagnosis after diagnosis. Tanis says the more difficult ones to deal with were those that affected his neurological development, while those affecting him physically were easier to take.
The first four months of Shale’s life were spent in the hospital, undergoing intensive care. Afterward, he underwent outpatient care for another year.
Meanwhile, Tanis scoured the Internet for answers. She and her husband worked very closely with the pediatric intensive care unit. Specialists provided the couple with educational resources, and they had round table discussions on what to expect with Shale.
“It was definitely a steep learning curve,” says Tanis. “But I wouldn’t change it for the world.”
The Millers were told Shale had a 50 percent chance of living to the age of two. When his second birth came and went, Tanis and husband breathed a small sigh of relief. They thought they were out of the woods.
But then Shale suddenly passed away. It was a great shock to Tanis and her family. Tanis says, however, it’s not uncommon for children with such extensive disabilities to simply stop functioning.
Shale’s passing wouldn’t take special needs children away from the Millers forever. They’re now in the process of adopting a special needs baby.
Tanis and her husband began considering adopting a special needs child when Shale was two. Once he was in kindergarten full time, they wanted to bring home a sibling for him that was more like him, and could fit better in his world.
Shale’s passing put the adoption on hold. A year later, Tanis and husband revisited the idea. They decided to do it, because having a special needs child was a wonderful experience, Tanis says. And she wants her children to grow up with a special needs child, because it’s made them caring, compassionate individuals.
“All children bring love and joy to parents,” says Tanis. “All of them do. But special needs children pull your family together in a way that is not possible otherwise. They just make you so aware of the preciousness of life.”
The Millers have been working with the Alberta government to adopt a new baby. After a 14-month approval process, Tanis and her husband found a baby they believe will be the next member to their family. They have been his respite family, bringing him home five days a week. They have bonded immensely with him.
It seemed everything was good to go, and the baby was almost legally a Miller. Until charges were recently filed against the family, questioning their suitability to adopt.
“It really shook our faith,” says Tanis. She is writing about the investigation on her blog now. Despite the tribulations, Tanis is hopeful that things will wok out the way they should.
“Children with developmental needs are just gems,” says Tanis. “I would adopt them all if I could.”
Learn more about her touching story by clicking play below.
Delivering a baby with a developmental disability is a life-changing experience. But for Ann Marie Berardi of Collegeville, Pa., it was a positive one for her and her family, because The Arc was there.
I talked to her recently about her experience with The Arc. You can hear my interview below. I learned how the organization has helped her raise her three-year-old son, Nicholas, who has Down syndrome. Ann Marie didn’t know Nicholas had the condition until he was born. So it was quite a surprise.
“I just doubted myself as a mother,” Ann Marie says. “How could I mother him? … I guess that’s, for a lot of the moms, their thoughts. You know, now that I look back on it, it was a very silly thing. I love being a mom to him. And it was through The Arc and through the therapists that have taught me many things in life with him.”
Ann Marie has no history of developmental disabilities in her family. She explains that she believes Nicholas has the condition because she and her husband had him later in life.
Ann Marie talks about the grieving period she went through after finding out Nicholas has Down syndrome. She was lost and confused. But then the wife of her husband’s business partner suggested they connect with The Arc. Ann Marie looked into it, and decided to reach out.
At two weeks old, Nicholas joined The Arc’s Early Intervention program. Arc physical therapists began working with Nicholas in the family’s home every week. He was alert and responsive, and bonded with the therapists right away. Although they were strangers, Ann Marie says Nicholas knew in his heart the therapists were there to help him.
At two years old, Nicholas was very delayed in his growth motor skills. Arc occupational and physical therapists came twice a week to work with Nicholas, and a special ed. teacher and speech therapist came once a week.
It all paid off. On Oct. 18 of this year, Nicholas graduated from The Arc’s Early Intervention program, right on schedule. Ann Marie recalls that day, and remembers it being bittersweet. She was saddened, because she was closing a chapter in her and her son’s life; but hopeful, because a new one would soon be opening.
Nicholas now goes to school five days a week, during morning sessions. He attends the Blue Bell Elementary IU three days a week, and a public preschool two days a week.
The Arc provides the IU classroom. It’s language-based, and Nicholas recieves education, as well as speech, occupational, and physical therapy. He’s there with seven other developmentally disabled children, some of which also have Down syndrome.
Nicholas is doing very well in both schools. His speech and fine motor skills are improving, and his classmates love him. “It’s all due to the Arc,” says Ann Marie.
Through it all, the biggest thing she learned is that it’s easier to accept and understand Nicholas’s diagnosis and help him through his delays. “They helped me reach out, go out into the community,” she says. “And be proud that here’s my son Nicholas, he is Down syndrome, and it’s ok.”
Ann Marie can’t imagine where she’d be today without The Arc. “They mean everything to me,” she says.
Get a closer look inside her story by listening my interview below.
It’s no secret the developmentally disabled have virtually no voice in our society. That’s why the Waiting List for services is thousands upon thousands of names long. Over 21,000 people are on the Waiting List in Pennsylvania alone.
Reporting on the plight of the developmentally disabled has become part of his life’s work. Geraldo is one of the few, if not only, journalists in America shedding light on the issues facing the mentally disabled, and exposing the problems in our social services system.
His latest project will be a news special about America’s Waiting List crisis. The hour-long expose will air Dec. 27 and 28 at 10 p.m. EST on FOX News Channel. (The dates have been changed from Jan. 6. I’ll post a reminder on the blog when showtime gets closer!)
Geraldo’s production team is working closely with the national Arc to gather stories and videos from family members and advocates that illustrate the grueling uphill battle they face in accessing services. Geraldo says he’s still taking videos, so please send them in as soon as you can. More details about this can be found in The Arc’s press release, and video submissions can be viewed on The Arc’s YouTube page.
In my interview, Geraldo explains how the deprivation of services has affected the mentally disabled. “The Waiting List is, in essence, the new institution,” he says. “It’s imprisoning in some ways, handicapping the families of the developmentally disabled, really handcuffing them in ways that put tremendous stress and strain on their lives.”
Geraldo’s introduction to these issues came in 1972, when he investigated and reported on the abhorrent neglect and abuse of mentally disabled patients at Willowbrook State School. His Emmy-Award-winning expose led to the school’s closing in 1987.
Geraldo tells me how Willowbrook was one of those pivotal stories that changed his life. It’s these horrors that drive the need for activism, regular reporting, and change.
“We have to remind people that even in tough times, this is an issue that is not an optional issue in any way, shape, or form,” he says. “But really demands attention, consideration, compassion, and reason.”
Hear the rest of my interview with Geraldo below. You might be a little confused at the very beginning, because I left in the part where I ask Geraldo how much time he has to talk before we started the interview. I think his response further validates his commitment to exposing the issues facing the mentally disabled, and I wanted to leave it in for you to hear.
That means you’ll also get an earful of the short briefing I typically give to interviewees before my podcasts, so welcome behind the scenes! ;)
Developmental disabilities are certainly not geographically specific. They pervade people’s lives throughout the country and the world. The national Arc organization, for example, has 140,000 members and 850 state and local chapters across the nation.
Although we focus on covering families, issues, and events local to Pennsylvania, I also like to explore what’s going on at other Arc chapters in the U.S. I think it provides some perspective on how things are going here in PA.
In Clay’s op-ed, he writes how the episode resonated with him because he saw himself and his family in the show. He and his wife Carole are the parents of three girls, Blaire, Paige, and Mia. Paige and Mia are autistic twins. They were diagnosed at age two and a half.
The twins are now eight. And I was curious to learn more about Clay’s story of having autistic twins — the challenges he and Carole have faced, and solutions they’ve discovered to raise Paige and Mia in the best way possible.
I talked to Clay yesterday, and our podcast is below. He takes me back to the beginning, when he and Carole first noticed developmental delays in Paige and Mia. At first, Clay and Carole thought they would outgrow it. But now they know that was a naive way of thinking about it.
Paige and Mia began undergoing occupational, speech, and physical therapy. They were responsive. A few years later, the girls started kindergarten. On that first day, while watching Paige and Mia board the bus, Clay says he realized two things.
One, the public school system would be able to work with his family to accommodate Paige and Mia’s disabilities and provide them a good education. But his second thought was chilling. This wouldn’t last forever. What support will there be when Paige and Mia transition out of high school?
That’s when Clay got involved with The Arc. He became a board member, and then president of The Arc of Dallas. He wanted to learn what he could do to help his daughters more.
Paige and Mia are now in the third grade, and doing well in their IEP programs. Clay and Carole have been very pleased with the school’s involvement and collaboration. He explains that Paige and Mia have largely similar disabilities and IEPs, which has made it easier to support their needs.
And a state institution, he says, is not part of the picture. As Clay and I talked about the Law and Order episode, he reflected on this decision that so many families with disabled children grappled with: Do I institutionalize my child?
Unfortunately, some families have no choice. But the waiting list in Texas is just as long as it is in Pennsylvania. Clay says The Arc, school, and his church have provided the support and guidance his family needs.
In fact, with Thanksgiving around the corner, this is something Clay and Carole are most grateful for. He tells me, “God has blessed us in many, many ways … The people we’ve met through our church, school, and community. These are folks who are wonderful, caring, and truly reflective of what God wants us each to do in each other’s lives, and that’s to be a part of each other’s lives.”
Listen to the rest of my interview with Clay right here.
It’s among the most pressing concerns that special needs families have: health insurance. I recently posted about a new healthcare plan, the Special Needs Plan, which provides other medical benefits to intellectually disabled people who are on Medicaid.
But I wanted to learn more. I talked to George Violand, an Arc board member and insurance consultant with 30 years in the business. We talked about what the Special Needs Plan is, what benefits it provides, who qualifies, what payers offer the plan, and how to enroll.
Listen to the podcast to get the scoop. If you have questions or want to learn more, feel free to contact George at gvioland@verizon.net, or Tom Dareneau, Executive Director of Arc Advocacy Services, at berksarc@aol.com. When e-mailing, be sure to include “Arc” in your subject line!
“Tropic Thunder” opens in theaters today. But as you’re probably well aware, it’s also opened a can of worms. Many people have come to the film’s defense, saying the film is just a joke, and that it’s actually a satire about actors playing the role of handicapped people, and not about disabled individuals.
In an interview posted on NPR’s Web site yesterday, he explains why people are still offended by the use of the word “retard” in the movie. He notes that, while one group might laugh, another is offended. And “we don’t call that humor, we call that humiliation,” he says.
Take a listen. It’s a great explanation supporting our community.
The Arc's brand-spanking new newsletter is hitting e-mail inboxes! To register, just e-mail us with the subject line, Add me to The Arc ReMarcs mailing list!
