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

 

 

 

 

 

 

 

 

 

 

 

 

Succeeding with a Dedicated, Caring CSI

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We are republishing this article from the winter 2016 Spectrum in honor of National Direct Support Professionals Recognition Week. 

Alex Bagley has won many Special Olympics medals over the years at the county, state, and national levels. The 23-year-old from Fayetteville competes in 5-on-5 basketball, cycling, and aquatics. Alex, who has autism, is a hard worker and is dedicated to doing the best job he can, no matter whether it is housework, homework, volunteer work, or athletics, says his mother, Angela Bagley.

Alex new.jpgBut it is not just hard work that has helped Alex excel. His Community Skills Instructor (CSI), Andrea Miller-Weir, has supported him for 11 years, setting goals beyond what others think is possible and helping him achieve them.

“If I had millions of dollars, it wouldn’t be enough to compensate her for her untiring efforts at making Alex the best he can be,” Bagley said. “She has tirelessly worked to ensure that he enjoys life to the fullest.”

And Alex does enjoy life! Athletics and physical fitness, which originally were challenging for him, are a major part of that life. “I couldn’t swim, play basketball, or ride a bike until I got Ms. Weir as my CSI,” Alex said. “I love working with Ms. Weir. She is nice, patient, she cares about me, and loves me. Ms. Weir is fun.”

“They can do whatever they set out to”

Weir said she began working with children with special needs as a substitute teacher in a middle school and found that she enjoyed it. “I was told I was very patient and caring with the children. So, when a job offer came my way to work with children with autism, I gladly accepted because I wanted to make a difference.”

Her mission as a CSI is “to improve the life of the person I am working with to their maximum potential, and to make them feel that they can do whatever they set out to,” she said.

Apr 2012-19 Apr 348.JPGWeir certainly has done that for Alex. When she met him, he wouldn’t even put his face in the water, Alex’s mom said, and now he has gold medals for swimming. Weir said, “I felt I was really making a difference when Alex rode his bike without me running behind him for fear of him falling and when he jumped in the water and swam two lengths of the pool and won the gold medal. I cried. It was his first time doing two lengths.

“I feel I am really making a difference when he says, ‘Ms. Weir, I am having fun,’ or ‘Ms. Weir, I like this!’  I look at Alex and he is happy.”

Back when Weir started working with Alex, he was having a tough time in PE with basketball, and his mom told Weir she wished he could improve. That small wish led Alex far beyond even Weir’s expectations. Weir began taking Alex to a recreation center after school every day and taught him how to dribble, throw, and shoot. Alex then joined a Special Olympics 3-on-3 basketball team for 11- to 12-year-olds, and eventually he moved on to a 5-on-5 team. “To make a long story short, his team was selected to represent the state of North Carolina in the Special Olympics national competition held in New Jersey. They even won the bronze medal in their division,” Weir said.

Working toward life goals

Now Weir is working on meaningful employment for Alex. About two years ago, she convinced a custodian to allow Alex to shadow him so he could learn his trade. Since then, Alex has done janitorial work in a couple of furniture stores. To overcome potential employers’ concerns about Alex’s capabilities, Weir created a portfolio about him and gathered letters of recommendation from previous supervisors. Weir hopes that Alex eventually will be able to work at assembling furniture.

Apr 2012-19 Apr 403.JPGAlex agrees that having a job is one of his top three goals in life; his others are to stay in good physical shape and to own a house. His mother hopes that he will continue to have strong faith in God and remain involved in his church. “Alex’s faith is a big part of his success,” Bagley said.

Weir said the most challenging part of her job is “getting others on board to see when I am trying to give Alex new and different experiences that are age-appropriate – wanting more for him. I ask myself, what are some things a 22-year-old would be doing? How would they be dressing? How would they be acting? What would they be participating in?”

Bagley said Weir’s complete dedication to Alex has made her like a second mother to him.

“She treats Alex as her son – she is firm where she needs to be, kind, and compassionate,” Bagley said. “As a working, divorced mom, I know that I would not have been able to provide Alex with the expertise that he’s received from Ms. Weir.

“Ms. Weir has been instrumental in reinforcing what Alex learned in preschool and at home, and she taught him skills that he would have likely taken many months, if not years, to learn. She’s taught him how to do laundry, to include sorting clothes; how to wash dishes; how to clean the bathrooms; how to dust and vacuum.

“Ms. Andrea Miller-Weir is worth more to Alex and our family than anyone can imagine.”

ASNC applauds and expresses our gratitude to all direct support professionals and annually awards the John and Claudia Roman Service Award to an outstanding ASNC direct support employee. Read more here.

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:

https://www.surveymonkey.com/r/HYCB3G3

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.

Acceptance is Best Vacation Memory

 

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This article was contributed by Nancy LaCross, ASNC Autism Resource Specialist in the Raleigh area.

This summer, our family went on an eight-day group tour of South Dakota, Wyoming, Montana, and Utah. We visited many beautiful sites: Yellowstone National Park, Old Faithful, Mammoth Hot Springs, Devils Tower, Mount Rushmore, Crazy Horse Memorial, The Little Big Horn Battlefield, Grand Teton National Park, Mormon Tabernacle, and more. Not only were the scenic views spectacular, but we also got to witness acceptance, which was heart-warming.

Our tour group was made up of me, my husband, my parents, our son Eric (who has autism, intellectual delays, and is 23 years old), our tour guide (Jeffrey), our motor coach driver (Ray), and 40 other passengers. Knowing that Eric is accustomed to having a predictable and daily visual schedule, it was intimidating to be on a bus with strangers, not knowing exactly where and when we would be stopping. These strangers knew nothing about our lives. What would happen if there was a meltdown and we needed to get away? In the past, we always drove separately just in case we needed a rapid getaway.

The trip began in Rapid City, SD. We had an evening kickoff meeting to get an overview of the itinerary and meet the tour guide. It was at this meeting that a friendly gentleman from New York, named Bill, came up to us and introduced himself. From that point on, he took an interest in our entire family. Eric isn’t much of a conversationalist, but thankfully Bill was more than happy to do most of the talking. Over the next few days, we encountered Bill many times on the motor coach, at stops, and at restaurants. Each time he would go out of his way to speak to Eric, call him by name, and give him a welcoming smile. Before long, everyone on the bus knew Eric by name and made him feel at ease. It was amazing to see that the acceptance and kindness of just one person had spread to the entire group.

It was fascinating to watch the social interactions on the trip in this natural setting. I had never said a word to anyone about his disability; I had not asked anyone to do anything. We hadn’t written an ISP or IEP goal to work on social skills. I didn’t have to secretly pay someone to include him. There was no insurance or co-pays. It was simply one person being accepting that had made all the difference. I have heard the phrase that it takes a village to raise a child, but prior to this trip, I frequently felt as if we were on our own island most of the time.

eric and driver.jpgOur tour guide, Jeffrey, who had been a classroom teacher, seemed to see educational opportunities for Eric and would offer him challenges. Though Eric was frequently reluctant, he would later push himself beyond his comfort zone. If our son hadn’t felt accepted by the group, he would never have gone beyond his comfort level.

How did Jeffrey challenge our son? Eric religiously shared a seat with me no matter where we would travel. Jeffrey was able to get Eric to share a seat with Dad, next sit by himself near us, and finally transition to the jump seat by the driver while the rest of the family was in the back. When Eric completed this leg of our trip and got out of the jump seat, Jeffrey made an announcement to the entire group about what a great job our co-pilot, Eric, had done. Everyone cheered and Eric was all smiles. (The others didn’t really know what a big deal this was, but I did. Just recently, we were at a Special Olympics bowling event and Eric couldn’t independently walk from the ball carousel to the bowling lane. I was the only parent holding her child’s hand at the event. In that particular setting, he was too afraid to independently walk just a few feet.)

At our last dinner as a group, Jeffrey came over to Eric and told him that he always has the youngest person in the group say a few words. He asked whether Eric would be comfortable doing it, and Eric said he would. I was shocked. The man of few words was going to stand up and address the entire group after we ate dinner. As folks were finishing their dessert, Jeffrey did a little recap of our adventure. Then he turned the floor over to Eric. Eric stood up, and though he needed some prompting to get started, he did thank Mom, Dad, Nana, and Papa for bringing him on the trip. Everyone cheered, and Eric’s NY friend was the most enthusiastic.

At that final dinner, other travelers also shared their favorite memories. I so desperately wanted to stand up and thank everyone for their acceptance, but I wasn’t as brave as Eric. My legs were weak, and the tears were welling in my eyes just at the thought. I stayed in my seat trying to reassure myself that I could do it, when suddenly the next person to stand was Bill. He started out by saying how he enjoyed spending time with his wife and listening to Jeffrey’s knowledgeable commentary. At this point, he paused, looked in our family’s direction, and said the best part about the trip was meeting his new friend, Eric. Bill had more to say, but my tears were streaming uncontrollably, and I never heard another word.

During my happy motherly moment, Eric instinctively handed me a napkin. (It wasn’t the first time he had seen my waterworks). After other passengers shared their memorable moments, there were hugs, handshakes, and final goodbyes. Bill asked whether he could get a picture with Eric, and others expressed how much they enjoyed meeting Eric. I had to excuse myself as the second wave of tears began streaming down my face. As my husband, Eric, and I dashed through the lobby to escape, Eric said, “Mom, here take my worry stone. I think you need it more than I do.” The tears now gushed even harder. Standing before me was this innocent man, my son with autism, who so quickly identified a way for me to self-soothe. On the inside, my mind was reflecting on the years before when he himself had trouble regulating his body, identifying when he was upset before a major meltdown, implementing ways to calm himself, us trying to teach him to use the Incredible 5-Point Scale, and the years of individual speech therapy to teach him to identify emotions and feeling.

One person really can make a difference. Let’s all spread acceptance and embrace the abilities of others.

 

Nancy LaCross can be contacted at nlacross@autismsociety-nc.org or 919-865-5093.

The Incredible 5 Point Scale and many other quality resources are available in the ASNC Bookstore at www.autismbookstore.com.

 

Camp Royall: Better than the Beach

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This article was written for the 2016 Camp Chronicle, which will be posted online later this month and mailed to campers and their families. To learn more about ASNC’s Camp Royall, go to www.camproyall.org.

For Scott Lambeth, a day at Camp Royall is better than a day at the beach.

Scott, who is 40 years old, has come to summer camp at Camp Royall 16 times! His first summer was in 1999, when he was just 23 and had recently heard about the camp.

“It’s the place I want to take my vacation,” Scott said. “My parents go to the beach, and I want to go to camp.”

Scott said he really enjoys Music and Motion, but his favorite part of camp is “making new friends and getting to see old friends.”

Scott’s mother, Bettie Lambeth, said, “While everybody who knew Scott loved him his whole life, he didn’t really have a group to hang out with. Along with other things he does in Chapel Hill, Camp Royall has given him a group.”

IMG_7428.JPGScott lives in Chapel Hill and has long been UNC’s biggest fan, his mom said. “He loves everything Carolina and has his Carolina Blue room decorated with UNC posters, stickers, lamps, etc.” He works in the UNC mailroom with the support of a TEACCH job coach and wonderful co-workers, she said.

Scott also loves Special Olympics Orange County, and he has participated year round since 2008. He serves on training panels for TEACCH and is active with their social group.

“More than anyone I have ever known, he gives his best to everything he does, all the time,” Bettie said. “He has boundless enthusiasm, and a wonderfully positive attitude.”

Camp Royall Director Lesley Fraser agreed, calling Scott an “all-star camper.”

“Scott has been supporting our staff training for many years by participating in a panel of adults with high-functioning autism during our 10 days of staff training,” Lesley said. “Scott is a huge advocate for Camp Royall and is more than happy to arrange his busy schedule to attend each year. He makes sure to tell the counselors about what he loves most about camp – his answer is always “EVERYTHING!” – and the importance of the counselor’s role in making each week the best week ever for our campers.

“This year, Scott was on the waiting list for summer camp, and a spot just happened to open up the day before the panel was scheduled. I called Scott’s mom to check that Scott could attend, and asked if she wouldn’t mind if I told Scott about the opening during the panel, so that the new staff members would get to see his reaction.

“His face when I told him was priceless, and was more than any words could describe for the new staff what Camp Royall means to Scott,” Lesley said.

Bettie said, “Camp Royall is Scott’s favorite thing that happens all year long. It is his thing to look forward to every year, and he loves participating in the pre-camp panel each year. He feels very much a part of Camp Royall.”

We love having Scott be a part of Camp Royall, too!

“It’s a beautiful place, and everyone there does a great job running it,” Scott said. “It’s magical, there’s just something about it.

“It’s my favorite place on earth!”

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