Looking for a Place to Belong? Join an ASNC Chapter

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Pender County Chapter

Fall is a great time to join one of the Autism Society of North Carolina’s 50 Chapters and Support Groups around the state. The beginning of the new school year also marks the restart of the groups’ activities and events.

ASNC’s Chapters and Support Groups are led by generous parents or family member volunteers who join together with other concerned individuals to create a welcoming and inclusive community of support for individuals with autism and their families. “So many of our members tell us how happy they are to finally have somewhere to turn and how good it feels to not feel alone,” said Amy Irvin, mom and a member of the leadership team for the Sampson County Chapter.

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Robeson County Chapter

Emily Green, a member of the Forsyth County Chapter said, “I consider these people my truest friends. I can trust them to watch (and understand) my kids or ask them for information about services, extracurricular activities, or medical advice. I love being part of such a supportive and accepting group of people that always have an answer, a suggestion, or know where to point you to help find one.”

If you live in one of the following areas, you can take part in one of our new or revitalized Chapters and Support Groups: Caldwell County, Halifax County, the High Country (Ashe, Alleghany, Watauga and Wilkes counties), Lee County, Macon County, Rowan County, Wayne County, or Wilson County.

Kristi Ford, Leader of the new Lee County Support Group, said the group has been planning meet-up events and playdates to get together regularly. “For this year, I’m most excited about seeing us mold together as a group, see friendships form, and for our children to become playmates,” she said. “Living a life of autism can be isolating for the whole family, so I hope we can reach families in our area to let them know that there are others walking the same journey and we can all have fun together.”

Jennifer Clapton, leader of the Halifax County Support Group, said, “We are excited about growing as a new chapter and increasing parent involvement. We also are very interested in offering ongoing social outings for our kids.”

Malinda Pennington said the Wilson County Chapter is excited about its second year. “We want to be able to support the unique needs of every family such as those with girls on the spectrum, young children school-age children, and adolescent/ adults with autism.”

No matter where you are, click here to find a group near you, or check out our online calendar to see events.

 

Q&A with Dr. Jed Baker, Autism Expert

 

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On Friday, November 4, Dr. Jed Baker will lead a daylong conference that touches on two very important topics for families and caregivers: managing frustration and anxiety and teaching social skills. Dr. Baker graciously shared some insights and previewed his talk in a Q&A recently.

 

Why is it important for caregivers to think about managing their frustration and anxiety levels when interacting or working with their child or student?

We fight fire with water. To respond intelligently and with understanding to a challenging situation requires us to manage our own emotions as caregivers. Our own reactivity can hijack our better judgment and escalate the problem rather than resolve the issue.

Everyone experiences anxiety and frustration. How does the experience differ for those on the autism spectrum?

Social perception, sensory, language, and learning issues can make many situations more confusing, unexpected, and frustrating to those with autism. Difficulty transcending the moment can make a temporary problem, like not getting to play a videogame, seem like a life-threatening crisis.

You provide concrete strategies that address anxiety and frustration in caregivers and children with autism spectrum disorder. Can you provide a preview of one example?

Preventing frustration depends on understanding how an individual perceives a difficult situation. For example, not getting to do a desired activity can seem like an unbearable issue. Providing a timer or visual schedule can help an individual know he will get what he wants, allowing him to wait more calmly.

As another example, anxiety about confusing classwork can make kids feel ashamed and afraid to try. Learning how to undo the shame of asking for help and disentangling it from judgments about intelligence can free students to more calmly approach challenging work in an effort to grow.

The conference also addresses social skills, including skill acquisition and motivation to use social skills. What’s the difference?

Acquisition strategies refer to ways to teach skills. We need to pick strategies that match an individual’s language ability. Teaching a skill does not ensure the individual wants to learn or use the skill. Motivation refers to “what’s in it for the individual” to learn and use the skill. Sometimes we use external rewards like favored activities or objects as rewards for using a social skill. Yet more importantly for motivating socializing are natural rewards like wanting a friend or making the interaction so much fun the individual wants to interact.

The social skills portion of the day also spends time focusing on peer interactions, creating acceptance, and reducing bullying. Why are these three things so important?

Socializing is a two-way street. We cannot try just to get those with ASD to fit in but also to get others to reach out. And all students have a right to a safe and accepting environment. One key to anti-bullying is to empower the peer community to police itself with upstanding peers.

Want to learn more? Join us on November 4 in Raleigh. To learn more about the conference and register, click here. The ASNC Bookstore will also be at the event with Dr. Baker’s numerous books. Register soon; the early bird price is valid through midnight October 16.

Kids Loved and Accepted as They Are at New Camps

 

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Parker and a friend at ASNC’s Carteret County summer day camp

Six-year-old Marshall Wingfield loves people, but he becomes overwhelmed in public and has always been a bit of a homebody, his mom says.

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Marshall loves video games

“He wants so much to fit in and have friends,” said Elaina Wingfield of her son, who was diagnosed with autism last year during his kindergarten year. “But his challenges make that very difficult. He doesn’t understand personal space, proper speech volume, or the social cues that come natural to us.”

This summer, Marshall found a place where he could make friends and be himself: ASNC’s new Greenville summer camp. “This is the first place he’s ever been that he wants to come back every day,” his mom said. “Marshall made friends that he wouldn’t have met otherwise. He felt confident attending the camp.”

fb_img_1472247633436Marshall liked it so much that he is attending the new afterschool program, as well. “It’s quiet, and they know how I am,” he explained to his mother when she asked why he wanted to go. After camp, he didn’t have to spend hours decompressing at home as he does after being in other environments, such as grocery stores, Elaina said. And they have a pool; one of Marshall’s favorite activities besides Minecraft is swimming. “He knew when they would go and how many days he’d have to wait,” she said.

The new programs in Greenville are part of an array of Social Recreation programs in four Eastern NC locations made possible by funding from Trillium Health Resources. The initiative supports children and adults with autism through programs in underserved areas of the state, helping them to improve their social and communication skills, peer networks, and physical well-being.

Social Recreation Services Director Sara Gage said, “We want them to feel love for who they are. We like to provide an environment that understands them and gives them the opportunity to flourish just as they are.”

Summer Day Camp ran from 9 a.m. to 5 p.m. on weekdays with a counselor-to-camper ratio of 1:1 or 1:2 based on self-help and behavioral needs. Campers ages 4-22 enjoyed swimming, arts and crafts, gym time, and all of the typical camp activities in Greenville, Wilmington, Carteret County, and Brunswick County. “As a parent, I loved getting the many arts and crafts they did,” Elaina said. “He even colored! He colored! He hates to color!”

In addition to benefiting the individuals with autism, the programs help families by providing respite and care tailored to individuals with autism. “This camp meant peace of mind,” Elaina said. “Like so many parents of autistic children, we weren’t in a financial position to pay for a summer camp that could or would accommodate his needs. Anything extra we have these days is going to medications, co-pays, and deductibles.”

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For Parker Samples’ parents, the day camp in Carteret County meant they could both keep their jobs this summer. Parker is a goofy and funny 12-year-old, always seeking any attention he can get. But he also has trouble communicating his wants and needs, and this can lead to frustration and meltdowns. Parker has always had to be taken care of by a family member rather than going to a camp during his school breaks or an afterschool program with other children.

His parents have made many career decisions based on what is best for their son, from cutting their hours, to giving up overtime, to passing up better positions in favor of schedule flexibility. This summer, they planned for his father, Bud, to quit his job to care for Parker during the days and find another job at night.

But then Parker was accepted to the new day camp. Much more than saving their jobs, the camp made Parker happy. “I think his favorite parts of camp are all the people,” Bud said. “All the attention he gets from everyone, even when it disrupts what they are doing at the time, is always so positive.

“I really can’t convey how this summer has helped Parker and us at home, just knowing that there really are people who care and understand what these special kids need. It’s not just a place for them to go during the summer, it’s not just the pool and bouncy houses – which are awesome – it’s the people that you trust with your kid, to make sure they are happy and safe and more so understood.

“There are reasons that they act how they do sometimes, from fear to anxiety or maybe they just don’t like the color a wall is,” he said. “And this was a whole house of people that understood all of that, and more than just understood, they accepted it and Parker into their hearts.”

 

To learn more

For more information about ASNC’s Social Recreation programs, please go online to www.autismsociety-nc.org/socialrecreation or contact the director for your area:

  • Greenville: SRP_Greenville@autismsociety-nc.org
  • Wilmington: SRP_Wilmington@autismsociety-nc.org
  • Brunswick: SRP_Brunswick@autismsociety-nc.org
  • Carteret County: SRP_Carteret@autismsociety-nc.org

 

 

 

 

 

 

 

 

 

 

 

 

Share Your Public Policy Priorities

 

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC.

The Autism Society of North Carolina advocates with policymakers at the General Assembly, state departments and divisions, and LME/MCOs to help create better services and opportunities for people on the autism spectrum. We are developing our public policy targets for the two-year legislative cycle that begins in January 2017.

Please help us by taking this quick survey, which asks you to prioritize potential public policy targets for the next two years:

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ASNC is committed to working with policymakers to expand access to services and supports, expand access to health care, improve education for children and young adults, expand access to employment, improve services infrastructure, and ensure that people on the spectrum are able to exercise their rights and live in a just world. Given the MANY needs for public policy advocacy across all of these issues and the limited resources with which to advocate, ASNC must focus on a select number of policy issues as we move forward.

Whether you are an individual on the spectrum, a family member, friend, professional, or other person who cares about people with autism, we want to know what you think. You are a person for whom we advocate, so your input into our public policy targets is crucial. And yes, choosing which issues are most important to you among the many important issues is difficult. We recognize that difficulty and appreciate your willingness to help us make the tough choices.  Our final public policy targets will be released in January 2017.

If you have questions about North Carolina policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-865-5068.

Recognize Your ASNC Direct Support Professional

Direct Support Professional: a formal name that doesn’t evoke the dedication and love that our hundreds of staff members show every day. Direct Support Professionals (DSPs) carry many more titles; they are Community Skills Instructors, Employment Supports Instructors, General Instructors, Residential Instructors, Camp Counselors, and more. But even these names do not tell the true story of the critical support they provide.

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Tyler and his DSP, Carey Bowman of ASNC

Every day, DSPs work one-to-one with individuals with autism, teaching skill acquisition and supporting them in reaching their goals. They become trusted friends, natural supports, and honorary members of families. They are the backbone of our organization.

We value and respect DSPs every day, but each year we truly celebrate them during Direct Support Professional Recognition Week in September, this year the 11th through 17th. During that week, stay tuned to our social media to hear stories of the impact these caring and talented folks are making in lives across NC.

Each September, we also accept nominations for the John and Claudia Roman Direct Service Award. The annual award was endowed by Lori and Gregg Ireland to honor Christine Roman, the ASNC Direct Service Professional who worked with their son, Vinnie. It was named for her parents, John and Claudia Roman. Families who have a DSP from the Autism Society of North Carolina may obtain a nomination for this award by emailing Kathy Cockrell. Nominations will be accepted through Sept. 30.

Last year’s winner of the Roman Award was Clary Lamberton of Asheville. In previous years, we have honored Melissa Mulcahey (2014), Allen Cohen (2013), Tanya Ahner-Mejia (2012), Lori Sweeney (2011), and Emily Bennett (2010) with this award for their tireless dedication, their ability to go above and beyond, and making a real impact in the lives of individuals with ASD and their communities.

Listen to what some parents have said about their DSPs:

“It’s because of people like her that our kids are loved and accepted and our families are comforted.”

“Rather than just stick him in a job, check him off the list and move on, he considered what would be best for Alex in the long run.”

“Her calm approach has been so valuable in helping my son self-regulate.”

“She has tirelessly worked to ensure that he enjoys life to the fullest.”

The Autism Society of North Carolina employs hundreds of direct support professionals; without their dedication and continued efforts, many individuals on the autism spectrum and their families would not have needed support services. Some come to work for ASNC for a few months, others stay for a lifetime.

DSPs are the largest percentage of ASNC’s employees, and we learn how to improve what we do as an organization and as a system from them. Many full-time ASNC employees and managers got their start in the field through direct support work. Because of this understanding throughout the organization of the importance of DSPs, our ultimate hope is that the life of an individual with autism is improved in some way through their work.

We invite you to give your DSP a pat on the back, nominate them for the Roman Award, or make a donation in their honor for a job well done during Direct Support Professional Recognition Week (or any week).

Run/Walk for Autism: A Day “I Can Just Be Me!”

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Two years ago at the 2014 Triangle Run/Walk for Autism, 7-year-old Abigail was in tears after crossing the finish line. She told her worried mother that she was sad because she didn’t win the race. Abigail’s parents explained to her that finishing first was not their goal.

The little girl with autism took the lesson to heart before the 2015 race. “She surprised me last year when we crossed the finish and she exclaimed how happy she was,” said her mother, Emily Hamilton. “She said that we are winners in this race because we can make people’s lives better.”

teamThe Hamilton family has indeed been making people’s lives better, raising more than $2,000 in the Autism Society of North Carolina’s biggest fundraiser of the year with their team, Piece, Love and Abigail. (The team’s name is a play on the puzzle piece that often represents autism, but they also have fun by sporting tie-dye and other hippie-themed attire, Emily said.)

But to the Hamiltons, the Triangle Run/Walk for Autism is much more than a fundraiser. “It gives us a chance to be with so many others on the spectrum,” Emily said. “It is a whole day where you know there will be no judgment, just understanding. It gives all of us a chance to see representation of the entire spectrum and socialize with families just like us.

“Abigail says it is a day ‘I can just be me!’”

Unfortunately, Abigail has not always had that opportunity. Her parents noticed she was different from other kids her age when she was as young as 1 and wasn’t meeting developmental milestones, but their pediatrician advised them that she would catch up. By the time Abigail was 3, the gap was widening between her and her day-care classmates. She behaved aggressively and was sensitive to sounds, lights, and other sensations.

“She was socially withdrawn and was struggling in almost every task asked of her,” Emily said. “Her behavior seemed to be reflecting all of the inner turmoil she was dealing with. We were at a loss.”

When she was 4, Abigail was diagnosed with Autism Spectrum Disorder, ADHD, and auditory processing disorder at UNC Hospital. Emily said their family and friends were surprised by the diagnoses. “Many people said things such as ‘But she’s a girl, they don’t have autism.’ Others said, ‘But she looks so normal.’”

Emily said this lack of understanding is another reason the family supports the Autism Society of North Carolina. This year, the family from Creedmoor started fundraising for their team early as part of Autism Awareness Month in April, and they made bracelets, lanyards, watchbands, and other items to reward those who donated. Abigail has enjoyed helping to make the bracelets, practicing her fine-motor skills, and interacting with donors, practicing her social skills. “So in a way, although we are helping the efforts of ASNC, the fundraising activities have actually helped her,” Emily said. “We have also found this to be a super way for us to have some mother-daughter time, which is so special to me!”

abby2.jpgAbigail is now 9 and is much more successful in school. She has received speech and occupational therapy for the past three years, and her mother has relied on resources from the Autism Society of North Carolina. “I found that the information provided by ASNC was very helpful in teaching myself and others about autism and was crucial in helping Abigail at school,” Emily said. “The IEP and services information proved to be invaluable as she progressed in school. We were able to utilize many of the tools and recommendations to formulate a plan that worked at school as well as home.”

Abigail has also benefited from her service dog, a French Briard that was trained by a local group, Ry-Con Service Dogs. “Prior to getting Samson, Abby suffered from some pretty severe social anxiety. She was unable to go into public places such as restaurants and grocery stores due to sensory overload and anxiety,” Emily said. “Since Samson came along, that has all but subsided. She loves introducing Samson to people that she meets, and he keeps her calm even in the most stressful of situations.”

Samson will be by Abigail’s side at the Triangle Run/Walk for Autism, but it is not one of those stressful situations. On Oct. 8, Abigail will proudly lead her team of family and friends through downtown Raleigh, making sure to spread her message. “I’m just like everybody else, but at the same time I like being different!”

 

Step out to improve lives in the Triangle Run/Walk for Autism on Saturday, Oct. 8! The event in downtown Raleigh will include a USATF-certified 5K race, which is part of the Second Empire Grand-Prix Series; a 5K noncompetitive run; a recreational 1-mile run/walk; and a kids’ dash. Celebrate autism awareness and acceptance with a kids’ play area, music, refreshments, and vendor space that will showcase local businesses, service providers, support resources, and sponsors. Proceeds will fund local programs of the Autism Society of North Carolina.

Register today: www.trianglerunwalkforautism.com