Join Council Connection for Updates!

 

April  2016

Hello Nancy,

Robert DeNiro’s recent decision to pull a documentary film from the prestigious Tribeca Film Festival has been in the news. DeNiro rightfully rejected the film, stating he does not “….believe it contributes to or furthers the discussion I had hoped for.” The discussion he refers to is the now debunked theory that childhood vaccines cause autism. The timing, just before World Autism Awareness Day on April 2 and Autism Awareness Month, is a reminder of the intense focus most fundraising efforts have had on discovering the cause of autism and finding a cure. While well intended, viewing autism mostly through the medical lens of diagnosis and treatment, has become offensive in recent years to advocates who would much prefer to be accepted for who they are rather than to be “treated” or “fixed” as if they have a disease. If we are to find a “cure” for what we now term Autism Spectrum Disorder, author Steve Silberman says, “The cure is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential.” Silberman and others, such as the leadership of the Autistic Self-Advocacy Network (ASAN), advocate for national recognition of Autism Acceptance Month in April, instead of Autism Awareness Month. The debate reflects a growing awareness of the need for capacity building within the community at large for acceptance and accommodation of people with autism.

This issue of Council Connection explores the debate with an interview with Ari Ne’eman, President and Co-founder of ASAN, and a nationally and internationally known leader in the autism advocacy movement. To elaborate on points Ne’eman raises, we provide several links to thought-leaders on the forefront of the conversation. Next, an interview with Maryland’s own Rebecca Rienzi of Pathfinders for Autism, brings the role of an “acceptance” based model home with grassroots efforts to build capacity for supportive communities. Finally, find a listing of upcoming webinars, opportunities, and events you don’t want to miss. 

 

Awareness or Acceptance Month, or both? Autistic or person with autism? Why does it matter, and to whom? Tap into what’s current and trending with this issue of Council Connection, then find us on Facebook and Twitter for daily updates and opportunities to get involved. 

 

Brian Cox

Meet Ari Ne’eman, President & Co-founder of ASAN

Ari Ne’eman, President & Co-founder of ASAN

 

In just ten years, the Autistic Self-Advocacy Network (ASAN) has grown from a small group of volunteers to becoming a leading national advocacy organization run by and for people with autism. Led by President and co-founder, Ari Ne’eman, ASAN is powered by a dedicated team of 10 paid staff, most working out of ASAN’s Washington, DC office. ASAN’s mission can be summarized with the tag-line, “Nothing about us, without us!”

We reached out to Ari as a part of preparations for Autism Awareness Month, and were immediately reminded of the irony of the request. ASAN does not recognize Autism Awareness Month, instead promoting Autism Acceptance Month. Under Ari’s leadership, ASAN is challenging the medical model of autism associated with Autism Awareness, and what he identifies as an unbalanced (and offensive) focus of fundraising to find a cure. Additionally, ASAN is also involved in several important policy issues, including: (1) the Transition to Independence Act (TIA), (2) a Communications Rights Initiative advocating for the rights of non-speaking students to have equal access to public education, and (3) developing policy tool kits for states such as Maryland to guide policy change. Maryland has used one of the tool kits to help pass legislation ensuring people with developmental disabilities will not be overlooked for an organ transplant because of disability.

 

To learn more about these initiatives read the full article here.

Note: On the 10th anniversary of the UN’s recognition of the rights of people with disabilities, and on the recent 8th recognition of Autism Awareness Day, Ari was invited to speak at the United Nations in New York for Autism and the 2030 Agenda: Inclusion and Neurodiversity. The video of the full day’s presentation is here. To view Ari Ne’eman’s panel, advance the time to hour 2:10:20.

Autism Acceptance: 

Steve Silberman

(photo courtesy of The Guardian)

Challenge your thinking with these advocates, thought – leaders, bloggers and authors:

 

This 15 minute TED Talk titled The Forgotten History of Autism is a must watch!!! 

Teaser: “Decades ago, few pediatricians had heard of autism. In 1975, 1 in 5,000 kids was estimated to have it.Today, 1 in 68 is on the autism spectrum. What caused this steep rise? Steve Silberman points to “a perfect storm of autism awareness” – a pair of psychologists with an accepting view, an unexpected pop culture moment and a new clinical test. But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944. Because it was buried in time, autism has been shrouded in misunderstanding ever since.”

 

Two concerns from parent Dina Bishara regarding the Autism Awareness movement: “First, it hurts autistic children who are growing up and adults who have already grown up hearing the relentless message that they are a tragedy, that they don’t actually belong here, that they are not, in fact, their “real” selves, but some disordered, broken, interrupted version. Second, it directly informs the allocation of hundreds of millions of dollars each year that flow to autism-related research. The efforts to root out the original sins that “cause” autism and to identify biomarkers, with the ultimate aim of “treatment” and prevention, consume the bulk of this money.” Read more here.

 

Meet the people with autism at the forefront of the Autism Acceptance movement: Why “Autism Awareness” is Not Enough: Steve Silberman (and friends) explain “Autism Acceptance”

 

So you thought “person first” was the only way to go? Think again: Identity first language vs. Person first language

Pathfinders for Autism:

Rebecca Rienzi, Executive Director of Pathfinders for Autism

Increasing Acceptance through Raising Awareness

 

In 2012, Pathfinders for Autism (PFA) provided “Autism 101” trainings for two Maryland State Police cadet classes. This was a year prior to the tragic death of Ethan Saylor in 2013 and the Governor’s executive order establishing a commission to make recommendations on developmental disabilities training for law enforcement. 

 

Now, just four years later, Rebecca Rienzi, Executive Director, finds herself at the helm of an organization challenged to meet the huge growth in demand for trainings – not just for police officers, but for fire and EMS personnel, librarians, swim instructors and even fielding requests from the business community, particularly restaurants. Restaurant workers, after less than an hour of training, can make the difference between a positive customer experience, and one which results in people with disabilities and families vowing to either never return or worse, to avoid going out at all.

The training now includes focus on autism as well as other developmental disabilities, and meets the required training mandates of the Maryland Police and Correctional Training Commissions (MPCTC). Find a description of the training provided by Pathfinders, here. 

PFA contracts with people with developmental disabilities to conduct trainings side-by-side staff and law enforcement. Pictured, left to right: Josh, Jake, & Glenn.

 

 

“This is a big wave we are riding,” Rebecca explained, “We’ve gone from 2 trainings a year to 3 trainings a week – we’ve done 40 trainings in the past 6 weeks.” To frame these training initiatives in the context of April is Autism fill-in-the-blank-month, PFA’s growing pains are a direct result of a growing awareness of the need for increased acceptance. Today, PFA

is pioneering training initiatives that will build much needed capacity for people with autism and family members to feel welcomed, safe, and valued in all facets of community living. Find more information and extensive resources on autism, tool kits, and links to social media networks at Pathfinders for Autism.  

Upcoming Events & Ongoing Opportunities: 

People with developmental disabilities, advocates, and family members are encouraged to participate in webinars and conferences to learn first hand about changes impacting services and supports in Maryland. 

 

The deadline to comment on the DD Council’s Five Year Strategic Plan is April 27  Your input matters! Check out our website to learn more about grant opportunities, current initiatives and access free resources. 

 

Parents’ Place of Maryland offers extensive training, information, and support to parents of children with disabilities, including training specific to improving services for children with autism

 

April 15 10:00-12:00 DDA offers a free webinar Employment First: Rural Job Development with Nancy Brooks-Lane answering the question: What are the necessary knowledge, skills and abilities required of an Employment Specialist working in areas where by all apparent indicators, there are no jobs? 

 

May 3rd at 2 p.m. Webinar from Association of People Supporting Employment First (APSE): Developing a Meaningful Day.This session will focus on helping people with disabilities achieve active, full, and respected lives as valued members of their community through very individualized Person-Centered Planning processes. “Getting great services” is obviously not the ultimate goal for people with disabilities – “GETTING A GREAT LIFE” is!

 

May 13 from 8:00 – 5:00 The Arc Maryland 2016 State Convention & Awards Luncheon: BE FEARLESS — Register now! 

 

July 31- August 2 Register now for Reinventing Quality in Baltimore. This year’s theme is Assuring Quality Lives for Everyone: Moving from the Why to the How.

info@md-council.org | http://www.md-council.org
217 E. Redwood Street
Suite 1300
Baltimore, MD 21202

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Summer Camp FUNDS!

summer-camps

The ARC has summer camp funds available for individuals with development disabilities, from birth to age twenty-one, who are already linked to the ARC. If you are in need of funding please contact Erna Coley at 410-836-7177.

New families will have to contact Erna by phone and then either complete the Arc application in person or by mail.  The families have to provide documentation such as proof of disability, pay stubs, etc.  Erna can e-mail you the application, if that wor! ks better for you

     All families must apply each year for services.  Funds are limited and are given on case by case.  There is still an Arc process in order to be approved for summer camp and other services.

 If you or your families have any questions please contact me at partners.success@hcps.org or here at the office at 410-273-5579.

Pre-CBI Activity for Library

This month, students are split into two separate CBI groups. Some are going to the library and traveling on public transportation, and others are helping to set up for a function at the church. Next month, the groups will switch! Everyone will get the same experiences! If your student is going to the library this month, please READ BELOW.

CBI TRIP REMINDERS!!

Trip: 4/22/16

Bring Packed Lunch

Homework: We will be doing an activity to prepare us for our trip out in the community. We will use a GPS Application to navigate through Bel Air. Please have your student download the Waze App on their smart phones, if they have one! See directions below for support.

Pre-Activity: If the weather is nice, students will be following directions given to them to navigate around the high school campus and the surrounding areas, where it is safe. Please fill out the permission slip sent home for your student to participate.

Due: April 19th

FAHS: Due: April 27th

 

Directions to Download Waze

Step 1: Go to App Store

Step 2: Search WAZE

Step 3: Download WAZE for FREE

Step 4: Try it out!

https://www.waze.com/

 

Where Do We Go From Here

Dear 2017 & 2018 Transitioning Students and Parents,

Nancy Brugh is  offering a special workshop, “Where Do We Go From Here? (And How Do We Get There?) for families whose sons and daughters will be transitioning from school to adult service providers in 2017 & 2018.  This adult agency selection training will be held on Wednesday evening, May 4th, from 6:30 p.m. – 8:00 p.m. in the John Archer School gym.

I know it is hard to believe that your sons and daughters will be exiting from public school into their adult lives. We will explain, step by step, what must be done to choose their adult support agencies.

This will be an ideal opportunity for you to ask the questions that are probably concerning you regarding transitioning, funding, community resource providers, agency selection and applications, etc. Agency representatives, Coordinators of Community Services, and families who have chosen self-directed plans for adult services will join with us to share information, answer questions, and set up appointments. We are very much looking forward to meeting with you to help make your transition process as stress free as possible.

Please call (410) 638-3843 to register, or send an email to Nancy.Brugh@hcps.org.

 

Thanks so much.  We hope to see you there!

 

Teen Sensory Social

APRIL 4th and May 2nd

5:00 to 6:00 p.m.

 

Please take advantage of this wonderful opportunity! Bel Air Library is providing two evenings where teens with special needs engage socially while they explore hands-on activities, crafts, and library materials. An accompanying adult is required to attend alongside the teen. Any student from 6th to 12th grade is welcome!

Please register here!

 

 

 

 

Going on Offense vs. Down Syndrome

Original Link to Webpage

Sally Jenkins

Jonathan Newton

Published on March 2, 2016

 

MOUNT PLEASANT, S.C. — The dogging question for any athlete is whether their competitive values mean anything in the real world. Here it was for Debbie and Frank Antonelli. What were all the sweat-soaked shirts and the worn-soled sneakers for when their infant son was on oxygen, facing a lifetime of impairments from slowed motor skills to cognitive deficits?

It was a random error in cell division, the pediatric specialist said. Down syndrome was an accident, a faulty extra copy of a single chromosome. “All the rest of them are yours,” he said.

They had counted with an unthinking confidence on having healthy kids, maybe even a team roster’s worth. She played basketball at North Carolina State before becoming a sportscaster, and he hit .400 for the Columbia University baseball team before making a career in elite sports management, and they hoped to add some quality little strivers to the general population. Their first child was an easy birth, and they were so confident of their second that she played nine holes of golf the day he was born. Then he came out scrunched up with the cord around his neck, and holes in his heart.

The doctors spoke in dead-end terms, even the ones who tried to be positive. Though it was 1997 and not the Victorian Age, one said, “Don’t let anybody tell you to institutionalize him.” Statistics showed most Down syndrome children would not see 50.

He won’t develop properly, they said, or play games like other children. “I can’t tell you how many times I heard the words can’t and won’t,” Debbie says. Defeatist words. They seemed to apply as much to her, as to him. You can’t have a career with a disabled child. You won’t be able to work.

But the Antonellis were athletes, and athletes don’t deal in can’t and won’t. They deal in can, and will.

Eighteen years later, Frankie Antonelli is a junior in high school with sparkling eyes, and a well-defined V shape from fitness training. “Hi, I’m Frankie, I’m a celebrity,” he says, wise-guy-like as he introduces himself to a reporter. With a motor-speech impediment that doesn’t dull his meaning, he proceeds to argue with some spirit that he’s the best basketball player in the Antonelli Driveway Series.

That’s the hectic weekly competition outside the family garage in Mount Pleasant, S.C.: Frankie and his older brother Joey, 20, against Debbie, who still has Division I shooting form, and her youngest son Patrick, 15. The results are pretty much a deadlock, according to Frank Sr., who referees.

How the Antonellis got from the hospital to a pickup game is a question worth asking. Debbie answers, “We’re all about offense around here.” In essence, a sports-minded family decided to launch a private experiment in human potential: How much could they affect a genetic glitch, they wondered, with old-fashioned athletic conditioning?

Down syndrome affects about 400,000 families in the United States; it’s the most common form of chromosomal disorder, showing in about  one out of every 700 babies. According to Priya Sunil Kishnani of the Duke Children’s Hospital Comprehensive Down Syndrome Program, who examines Frankie yearly, there is a wide spectrum of ability in people with the disorder that isn’t explained solely by genetics.

“Some children have poor speech or communication and other aspects of development, and others are very high functioning,” she says. “The environment also plays a very important role. There are all these interactions between genes, but there is also the whole environmental factor, the home environment and what they’re exposed to.”

The Antonellis decided to see what an actively competitive home environment could do for Frankie: How might he develop if they thought in terms of maximizing his abilities instead of disabilities? “We know he has limitations,” Frank says. “But why should we state those? Why shouldn’t we find out what they are almost by accident?”

It hasn’t always been the most organized experiment, conducted hectically between two parents working full time while raising three boys. For more than 20 years, Debbie has called 70 to 80 college basketball games a season (both women’s and men’s) as a sharply-observant, contralto-voiced analyst for Fox Sports, ESPN, Raycom, CBS and Westwood One. She hesitates to count the exact number of broadcasts she works. “I don’t really want to know how much I’m gone, because I fear I’ll lose my mother of the year status and I don’t really want to jeopardize that,” she says.

Frank, president of the Charleston-based athlete and event management firm Empire Sports, holds things down at home while she travels. She calls as many as four games a week, often commuting by car and driving through the night to make another practice or tip off.

The time in the car pales compared to her drive to see what her son can and will do. “What’s your dream, Frankie?” his mother asks him one evening, as she accelerates between basketball and soccer practices.

“To go to the prom,” he says.

Overcoming physical limitations

That first night at the hospital back in 1997, a nurse asked if they wanted a priest in case the baby needed last rites. After surgery repaired his heart, he was on monitors and oxygen machines for the next eight months. Debbie lapsed into a semi-silent depression, as she listened tensely day after day to the ticking of the machines to be sure he was still breathing, while also trying to care for Joey, a toddler, “who didn’t get even close to 50 percent of me,” Debbie says.

Frank kept their equilibrium, a gentle-voiced, liquid-eyed man who slept with the oxygen tank under his side of the bed. He tended to the machines, changing the tanks in the middle of the night, though it meant sleepwalking through his job at the time,  managing golf courses for Jack Nicklaus in Dayton, Ohio.

Finally, Frankie came off the machines and they began to rest easier and to think about how to raise a Down syndrome child. Their pediatrician, David Roer, who had become a good friend, reassured them, “I’m not going to sugarcoat it, you got a battle ahead of you. But he’s going to be fine and you’re going to be fine.”

It was Frank who first insisted one faulty chromosome shouldn’t change their lives. “We’re not going to stop what we’re doing,” he said.

When a call came in from ESPN offering Debbie a game assignment, he said, “Go. I’ll take care of the kids.” As she studied some film and talked basketball, he noticed, the depression lifted a little. “It was the only time she was like herself again,” he says.

They moved to South Carolina so she could get a fresh start and he could partner in building a new golf course, Bull’s Bay, and open the management firm. But she was still low, angst-ridden about Frankie’s health and how to be a mother to a disabled child. At an Atlantic Coast Conference men’s game, when a team of kids from Special Olympics was scheduled to perform at halftime, she averted her eyes, took off her earpiece, and left the floor. “I couldn’t watch,” she says. “Couldn’t do it.” She was afraid she would cry through the second half of the telecast.

Her former coach, the legendary Kay Yow of North Carolina State, finally snapped her out of it. Yow, who was in her own long-running battle with breast cancer, sat down next to her at the 1998 NCAA Women’s Final Four.

“How you doing?” Yow asked.

“I’m fine,” Debbie said.

“No, how are you doing?” Yow said, more firmly.

“I’m having a hard time,” Debbie said.

Yow went into coaching mode. From 1984 to 1986, Debbie Mulligan had been a too-slow guard who nevertheless led the Wolfpack to three straight NCAA tournament appearances. Now Yow talked to her like she was that player again. “God’s not always going to give you roses,” she said.

“Swish your feet and get out,” Yow instructed Debbie.

The conversation altered everything. Debbie went home and told Frank, “That’s it. No more self-pity.” They would approach Down syndrome like competitors, and become the best parents to a special-needs child they could be. Just because Frankie had weak motor function, she announced, they weren’t going to have a child who sat around and watched TV. “That’s not what we do,” Debbie said. “I’ll live in a trailer before he just sits on the couch.”

They didn’t understand the science behind Down syndrome, terms like “trisomy” and “aneuploidy.” But they did know human performance and how to surpass expectations. They had met at Ohio University, where they both got master’s degrees in sports management while playing tireless games of rec ball together. They were still at their playing weights 10 years later. They knew the value of conditioning, how to deal with reversals, how to overcome physical limitations. And they knew teamwork.

“We’re both Division I athletes, we both worked hard at our craft, we’ve been challenged and been at the bottom and we’ve picked ourselves up and we’ve overcome,” Debbie says. “If you’ve ever competed — really competed — then you’ve dived into something heart and soul. I’d done that and so had Frank.”

There were some aspects of Frankie’s development they obviously couldn’t alter — they couldn’t make him taller. But Debbie had always been told she was too short to be a great basketball player, too. That didn’t mean there was no way to compensate for weaknesses that came with DS, such as hypotonia, muscle laxity. Debbie began to take Frankie to a local public swimming pool for lessons, and forbade him to use the ladder. She wanted him to build strength by pushing himself out of the pool. DS children also have balance issues, so she and Frank took him on bike rides. First they towed him in a bucket, then taught him to sit upright on a tagalong double-seater, then put him on training wheels, and finally weaned him off of those.

Since Down syndrome can come with gait issues, they consulted a top foot specialist who treated college basketball players. Each year Frankie got custom-designed orthotics to make sure his hips and ankles were properly aligned when he walked. To deal with his speech impediment, they hired a therapist and instituted a rule that he had to talk in complete sentences.

When Joey and Patrick were taught to clear their own plates from the table, so was Frankie. The family rule was that anyone who got out of line lost everything with an on-off switch, from games to TVs; it included Frankie. At family gatherings they told his grandparents and aunts and uncles, “Don’t give him any shortcuts, he’s got the same expectations as the other boys.”

Joey and Patrick learned to tell their playmates, “He can do everything you can. It just takes him a little longer.”

Photo gallery: ‘What’s your dream, Frankie?’

Former basketball star Debbie Antonelli never lowered expectation for son with Down syndrome.

To be sure they were on the right track, the Antonellis took Frankie to Duke’s clinic for annual checkups. Kishnani affirmed what their instincts told them. Frankie was on the high end of the spectrum of children with Down syndrome, and capable of meeting challenges physically and cognitively. In fact, he was flourishing.

“Sometimes we don’t recognize that they can do it,” Krishnani says, “and sometimes we don’t give them the opportunity to do it, and sometimes we don’t have the patience, because it’s just easier to take care of it than to let a child with a disability try to do it, because it takes so much more time. Frankie represents an example of what an individual can do if given the opportunity.”

But as Frankie moved into junior high and high school, the Antonellis found that not everyone set the bar as high as they did. Frankie was defined as having an “Educable Intellectual Disability,” which meant he needed a modified curriculum called an Individual Education Program (IEP). But too often apathetic teachers and administrators interpreted it as “babysitting,” Frank says. They simply gave him something basic to do to pass the time, like learning to tie shoes.

Debbie chafed at the separateness of special ed. Her team instincts told her that completely isolating kids for their weaknesses was counterproductive and would only make those weaknesses more pronounced. She fought for inclusion, demanding that he spend at least part of the school day with the rest of the students.

“When you went to school did you ever see the special ed kids?” Debbie asks rhetorically. “I never did. You never saw them. They were separate. They had separate classes, they ate lunch separately.”

When Debbie discovered that some universities offered continuing education programs for high-functioning students with intellectual disabilities, it was a revelation. Frankie might be able to go to college — no one had ever told her that. She studied the requirements:  he’d need reading comprehension, basic math, and speech classes. He’d need to count money, read a calendar, follow a schedule, and self-correct.

“College might be an option, so we’re not going to be just tying shoes,” she announced to his teachers. “I want him to have options just like I want my other two boys to have options.”

Debbie designed an IEP aimed at getting Frankie college-ready. But it required teachers who were creative and flexible, and those were in short supply. One afternoon during his eighth-grade year Debbie found herself standing at the front desk of Frankie’s middle school with her voice rising. Frankie was supposed to work in the school office to help him meet his communication-speech goal. But his teacher hadn’t even bothered to send him.

“Does anybody around here care?” Debbie said, her voice elevating to a near shout. “Is anyone gonna do their job?”

They enrolled Frankie in Wando High School, the largest public school in the state, a 4,000-student institution where Joey and all of his friends went. His study program called for him to spend part of the day in a general setting with his peers, but Debbie discovered this wasn’t happening.

“He’s gonna tell you he can’t, and you’re gonna tell him he can.”

—Debbie Antonelli

She beseeched the school administrators, “What would you do, if you were me? Would you just give up?”

Her resilience won out. Gradually, the Antonellis formed a team of teachers and therapists to collaborate with what the family wanted. “Are you willing?” Debbie would ask them. “Are you invested in helping him or are you gonna just go through the motions?”

Shawntell Pace was willing — she was a cheerful young communications instructor with a class called Tribe Talk, in which students learned to work with digital video and recording equipment, and troubleshoot their own issues.

She’d never had a special ed student before. But Debbie told her, “Treat him like the other kids. He can do what you ask, and he will.” Frankie learned to set up a tripod and use a video camera, and to memorize speeches for videos. “He can memorize a script by lunchtime,” Pace says. “He catches on quick and I don’t cut him any slack.”

Diane McGee was willing. She was a masterly special ed English teacher with a wisecracking enthusiasm, who didn’t talk down to students and could hold their attention on a book for 90 minutes. When she introduced Frankie’s class to Jack London’s “White Fang,” she said, “I’m gonna give you a head’s up, people die and animals die. It’s going to be hard but we’ll muddle through.”

Mel O’Keefe, a local fitness trainer, was willing. As Frankie grew toward manhood Debbie began to worry about his weight — Down syndrome comes with a slow metabolism. When he got up to 169 pounds, she cut out mac and cheese and sent him three times a week to the trainer.

“He’s gonna tell you he can’t, and you’re gonna tell him he can,” Debbie said.

At first, Frankie couldn’t lift any more weight than his mother. That was two years ago. Since then he’s lost 20 pounds of fat and put on 10 pounds of muscle. On a recent afternoon he chinned himself from a high bar, and did an assortment of lifts with 30-pound weights on cables. “I’m coming to your house for dinner,” he told Mel, grinning.

When he finished the workout, Mel asked, “How do you feel?”

“Strong and powerful,” Frankie said.

“Strong and powerful,” Debbie repeated.

It was the end of another day of shuttling to and from schools and practices. In the darkening car, Debbie asked, “What’s your dream, Frankie?”

He said, “I want to be bionic.”

Seeking full independence

In October, Debbie took Frankie to see Clemson University. As they strolled around campus she glanced at her son and realized that in his black leather jacket and black jeans he looked like any other frat boy. At the front door of the administration building, two attractive female student greeters waved and said brightly, “Welcome to Clemson.”

He wheeled around and said to his mother, “Where do I sign up?”

Clemson offers an alternative certificate program called LIFE, which allows students with intellectual disabilities to experience college. The two-year plan, which costs about $12,000 a semester, teaches independence and self-advocacy, with courses from finance to vocational. Students live on campus in supported apartments, attend sports events, join clubs.

The application process is arduous: Frankie will have to prove himself academically in an on-site writing test, and also pass a faculty interview and demonstrate he can live somewhat independently. He’s determined to do it. “I’m going to Clemson,” he declares.

Getting him there remains a high-energy team collaboration that relies on cooperation from Frankie’s amiable, low-maintenance siblings. Joey, a sports management major at the University of South Carolina, helps to car pool his younger brothers when he visits from college. “Don’t worry, I got ’em,” he says. Patrick is a tousle-headed, gifted two-sport athlete who doesn’t have to be reminded to do his homework; he’s an honors student.

In order to spend more time with the boys when she’s home, Debbie volunteers as a coach for Patrick’s eighth-grade basketball team, with Frankie as her assistant coach. Frankie holds the clipboard and gets in some math work by tracking the fouls and other statistics. She hollers at her young charges, including her youngest son, “Icy Hot is going under your arms if you don’t keep your hands up on D!”

The main reason it all works, Debbie says, is because “I married a great man.” One recent morning after driving the two younger boys to school, she pulls into the garage and says, “Bet you ten bucks Frank cleaned the kitchen.” When she throws open the door, it’s immaculate.

The Antonellis’ ambition for Frankie post-college is full independence, living on his own, working and “paying taxes like everyone else,” Debbie says. But ambitions also raise the prospect of potential failure. “Failure, yeah,” Debbie says. “That’s a hard one.” She pauses, and says, “Look, I don’t want him to live in the middle.”

This winter Frankie tried out for varsity basketball at Wando High. With about 80 others, he went through weeks of running drills and scrimmages. “Our message was, you try like anyone else,” Frank says. “And like anyone else you may fail.” He got cut. But he salved his disappointment by asking the coach if there was a way he could contribute, and was appointed team videographer. Ask how he felt about not making it, he shrugs and says, “I’ll play at the next level.” When his mother raises a quizzical eyebrow, he smiles and says, “On a rec team at Clemson.”

Debbie and Frank will spend the next few months getting Frankie prepped for the college application process with a dueling sense of gratification and ambivalence. They spend evenings tutoring him on how to handle his money, and social situations.

“How old do you have to be to have a girlfriend?” Debbie asks him.

“I already have one,” he says.

“I’m bumping it up to 25,” she says.

It will be hard to let him go. The family is palpably close: When Joey went to college the younger boys had the option of separate rooms, but they decided to stay crammed into twin beds in the room they’ve always shared, so they can talk at night. Sometimes when Joey comes home he piles in there too.

In 1983, life expectancy for people with Down syndrome was just 25. As of 1997, it was 50. Today it’s 60. One reason is a better understanding of medical complications that go with the disorder. But another is the shift away from institutionalization and low-bar care, toward meaningful education and higher expectations. It’s a shift the Antonellis didn’t need medical advice to make.

“Frankie is almost like an inspiration for families who have younger children,” says Kishnani, “to know this is what our children can grow up to be if we provide them with the environment, and if we’re able to accept them for their strengths and limitations. All of us have limitations.”

ATN/AIR-P Sleep Tool Kits

New! Autism Speaks Launches New Tool Kit: Sleep Strategies for Teens with Autism Spectrum Disorder: A Guide for Parents!

Many teens with ASD have difficulty with sleep, which can affect their daytime functioning, as well as that of their families. This tool kit is designed to provide parents with strategies to improve sleep in their teens affected by ASD and helps tackle the problems of falling asleep and staying asleep through the night.

Download Sleep Strategies for Teens with Autism Spectrum Disorder: A Guide for Parents here!

Strategies to Improve Sleep in Children with Autism Spectrum Disorders: A Parent’s Guide

Many children with ASD have difficulty with sleep. This can be stressful for children and their families. This informational booklet is designed to provide parents with strategies to improve sleep in their child affected by autism spectrum disorders (ASD). The suggestions in this tool kit are based on both research and clinical experience of sleep experts.

Download the Sleep Tool Kit (Parent Booklet) here!

“These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS, or Autism Speaks.”

Sleep Tool Kit Quick Tips

Here are some other ideas that might help improve a child’s sleep. We call them “quick tips” and they may be used in addition to the Sleep Toolkit.

Start by reading the Sleep Toolkit. Then look at these additional ideas for help with:
· Using a Visual Schedule to Teach Bedtime Routines
· Images for a Visual Schedule · Using a bedtime pass
· Sleep Tips for Children with Autism who have Limited Verbal Skills

We developed these quick tips based on questions and feedback from parents. If you have other questions or ideas about other tips that would be helpful, please let us know by emailing us at atn@autismspeaks.org.

Download the Sleep Tool Kit Quick Tips here!

“These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS, or Autism Speaks.”

Life Courses Handouts

 

www.lifecoursetools.com

I am constantly on the lookout for resources to help your student experience a seamless transition into his/her life after high school. During a conference I participated in, The ARC gave a wonderful presentation using all of the handouts on http://www.lifecoursetools.com. The entire presentation revolved around a good life for individuals with special needs and differing abilities, and how we can help out students to achieve that good life.

Please go through the activities and handouts to identify which ones work best for you! I encourage you to bring your completed.