Surviving the Season: Tips to Help You Enjoy the Holidays

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This article was contributed by Wanda Curley, an Autism Resource Specialist in the Triad and mom to a son with autism.

The holidays are anticipated by many, yet when the temperatures cool and bells start jingling, we will all be likely to hear people around us talking about the added stress and strain they can bring to families as well. This can be doubly true for families with a loved one on the spectrum, who must then deal with the added stress of additional changes and transitions, crowds, disrupted or broken routines, and overwhelming noise and lights.

The main key to avoid frustration and help your loved one on the spectrum enjoy (or at least survive) the season is found in one word: PREPARATION! So, how do we prepare?

Know and assess

One of the first things we as parents must do is simply to know our child well and to assess the amount of holiday cheer that he or she can truly tolerate. Can your child tolerate the additional crowds at the local mall from late November through December? If not, then consider avoiding those days and make a plan to let them shop earlier in the year or at times during the season when stores are less crowded. Can your child handle seeing big changes in your home such as the sudden addition of the lights, Christmas tree, etc.? If not, then consider scaling back your decorations or adding them very gradually over a few weeks. This can also be a good way to involve your child in the process and allow him to take ownership of some customs and activities that he can enjoy. The more control that your loved one has over the extra activity of the season, the more tolerant and accepting of the changes they are apt to be. Make sure you give ample choices of holiday activities, including some calming, non-holiday options that are familiar and typical for them in their daily routines.

Plan ahead

Have a holiday season calendar prepared for your loved one in addition to their typical visual support systems. Mark the dates of the various holiday events, such as special concerts or dinner with extended family. Create a social story for the various events so that your child will know what to expect way ahead of time. You may even want to prepare a photo album with pictures of family and other guests who may be visiting your home, or of whom you may be traveling to visit during the holidays. Schedule looking at the photo album as a leisure activity on your child’s schedule, and that way your child will feel more familiar with people they don’t see as often during the year. Role playing and scripting of typical family situations during the holidays may go a long way toward relieving the added anxiety your loved one may feel during the season.

Provide an escape

Have a calming space set aside for your child that he or she can access whenever the hustle and bustle of the holidays gets to be too much. Teach your child self-management by using a break card or developing some type of cue for them to show when they are anxious and need some space to themselves. If you’re visiting in someone else’s home, this may be just a quiet room away from everyone where the lights can be turned down, soft music played, etc.

Duplicate favorite items

If you are traveling for the holidays, make sure that you have plenty of your child’s “favorites” on hand, including snacks, books, toys, sensory items, etc. You can also help by letting extended family or friends know about some of these items so they have them available as well. Many times, our family members and friends feel just as helpless as we do in difficult situations, so they will be happy that you have not only educated them on your child’s needs but also allowed them to be part of the solution. If you must travel by plane, use social stories and visual supports to make sure your child is prepared for any delays, as well as what will actually occur during the boarding and flying process.

Be flexible and “let go” when needed

Many of us have happy memories of past holidays and thus make expectations for the season that can be hard to meet provided the difficulties our loved ones may endure during this busy time. Perhaps you have always traveled instead of staying at home, or had a custom of exchanging and opening all gifts on Christmas Eve or Christmas morning. Don’t be afraid to “change things up” if you need to do so to make it easier on your child and your entire family. Perhaps you need to start a custom of opening just one gift per day to help prevent your loved one from being overwhelmed. In our family’s case, our son with autism has never truly enjoyed the unwrapping of gifts, so we started a custom of making him a nice big gift bag with all of his gifts together. He can pull them all at the same time, or he can take his time and pull out one at a time without having to unwrap anything. He much prefers this process, and we have seen him become much less anxious now as a result of this one change we made for him.

Does your child not enjoy the concerts or other crowded events of the season? Opt for unconventional or quieter activities that can be enjoyed by just your family. One of our newest traditions is to enjoy a light show together by car. Just a handful of us are in the car, and we can adjust the sound as well as bring along some of our favorite holiday treats to share. Don’t feel guilty about having to let go of some time-honored traditions or customs. Make new ones that are more comfortable for your family, and don’t stress about those things that are difficult to access now. Our children on the spectrum can often sense our anxiety and frustration, which may then lead to their own, so it’s important to find time to take a breath and “de-stress” ourselves as well.

The holidays truly are a wonderful time of year, so don’t hesitate to begin new traditions and customs as needed. Think “outside the box” and finally … try to RELAX AND ENJOY!

Wanda Curley can be reached at 336-333-0197, ext. 1412, or wcurley@autismsociety-nc.org.

 

To Learn More

 

The ASNC Bookstore has some recommended resources for you:

Boy and a Bear: The Children’s Relaxation Book by Lori Lite

Why Does Izzy Cover Her Ears? Dealing With Sensory Overload by Jennifer Veenendall

Picture This: Places You Go/Things You Do, a CD Rom with pictures of modes of travel to add to visual schedules

Books to help friends and relatives understand autism:

Can I Tell You about Autism? by Jude Welton

Grandparent’s Guide to ASD by Nancy Mucklow

A Friend’s and Relative’s Guide to Supporting Family with Autism by Ann Palmer

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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

 

 

 

 

 

 

 

 

 

 

 

 

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.