How to Help as a Grandparent

Terry and grandson

This article was contributed by Terry Fetzer, who is an Autism Resource Specialist in the Eastern region and has a son and a grandson with autism.

Most of us remember what a miracle it was when we became a parent of a child. The years pass, and now your child is an adult having a child, and the memories flood back. As an excited grandparent, you celebrate the birth of your grandchild with the parents. As the child grows, differences begin to show up in the development of communication, joint attention, playing with objects, and responding to others. The usual milestones are not being met, and the parents seek help. After evaluations, your grandchild receives a diagnosis: Autism Spectrum Disorder. You’re faced with the reality that your precious grandchild has special needs. The emotional rollercoaster begins to takes over. You go through a grieving period as you begin to process how this will affect the lives of your child and their spouse. The love you feel is strong, and they will need you now more than ever. Your heart aches, wondering how they will manage; you know how much time and energy it has taken over the years to raise your own children. The challenge as a grandparent of a child on the autism spectrum begins to sink in. What does this really mean? You are afraid that you will not be able to keep up with the demands that will come up day after day. You take a deep breath! You decide you will have the courage to continue, one day at a time. With strength and support from each other, your family begins the journey.

You can help your child

Love your child and try to listen before talking. Be kind and allow your son or daughter to ask for help instead of jumping in and trying to fix things in a way you think is best. This is their child, and as adults, they need your love, support, and guidance, not your control over their lives. Respect their decisions even you would do something different.

Understand that it will take some time to establish a routine that will work for the family. Try to use the strategies and schedules that they have worked on to maintain consistency. It is OK to share suggestions and let them know if you do not understand something, but please try first to follow their lead. They will be tired, and you being on board with their routine will help with transitions and their anxiety. This helps the whole family.

Be helpful and let them know when you are available to go to the store, fix a meal, care for the other children, and help around the house. Even taking the kids for an hour or so can provide a break they will appreciate very much.

Keep encouraging them and let them know that you are cheering them on. Use praise to lift them up. Be positive look for the progress they are making each day.

What I have learned over the years

Educate yourself by finding out about the disability. Ask your children to share resources they have found. Find local resources and share the information with your children. Share articles and news you have heard to show you are actively wanting to understand your grandchild.

If possible and okay with the parents, it is helpful to accompany your grandchildren to meetings, doctor visits, therapy sessions, etc., so you can talk about how things are going and ask questions if you do not understand. The more you learn, the better support you can be for the family.

Take care of yourself and balance your time with your husband and your extended family. Share your love and attention with all of your grandchildren. Try not to favor or ignore the one with the disability. Love them all as equally as you can. Every family member is a vital part of the support system for the family. You need each other.

Try to connect with support groups and other people in your community who have grandchildren with a disability. Spend some time together to share experiences. It is comforting to know you are not alone on the journey with your children and grandchildren. You also can learn from each other and be a positive support during the good and difficult times.

How to support your grandchild

Love your grandchild as a person first, no matter what. Accept them for who they are. Meet them where they are. Learn what they like and play with them. Enjoy what time you have together.

When they get upset, try to redirect them. Keep language clear, concise, and to a minimum. Give them time to calm down and get themselves together as much as possible. Don’t take personally anything that is said in an explosive moment. Always see this as a symptom, not who they really are as a person.

Help them learn to trust you and feel you are always a safe person to whom they can turn whenever they need help. Give them support and help in a way that is loving, kind, and consistent.

Remember, our grandchildren are unique individuals. They need and deserve the best life possible. Be a positive influence and let them know your love grows with them each and every day.

Terry Fetzer can be reached at tfetzer@autismsociety-nc.org or 252-670-5275.

Supported Employment Brings Fulfillment

2014-11-07-adamricci-003-terry-hamletEditor’s note: This article previously appeared in ASNC’s Spectrum magazine.

David Roth’s parents never have to wake him up in the morning or push him to get out the door on time for his job. The 27-year-old with autism works at the Courtyard in Chapel Hill, mostly in the fast-paced, physically demanding laundry, but he is always happy to go.

“He loves to work. He absolutely loves it,” said his mother, Susan Roth.

David started working at the hotel when he was still in high school. It was a volunteer position, facilitated through East Chapel Hill High School, where the young man was having some behavioral issues when he was made to do things he did not want to do. “He was absolutely the happiest when he was out in the community and especially when he was at his job,” Susan said.

Now, almost a decade later, David holds a paying position at the Courtyard along with two other part-time jobs, with the support of an employment supports instructor from the Autism Society of North Carolina (ASNC). His mother says the jobs have helped him learn how to interact with other people, provided the consistent schedule that he needs, and given him pride and a sense of accomplishment. They have even improved his reading skills because he is interested in reading about his job duties as opposed to school topics.

Lorraine La Pointe’s 25-year-old son with autism, Adam Ricci, also holds several part-time jobs. She says they have “opened up his circle”; when she is with him in the community, he always sees someone he knows. She also noticed that Adam has recently matured. “I think it really has changed him.”

Kathryn Lane, who is Adam’s employment supports instructor through ASNC, agrees, saying that Adam is calmer on the job than at other times. Having a job has also taught him responsibility as it requires him to be punctual, have clean, neat clothing, and manage his time as he completes tasks, she said.

“Seeing the progress is really rewarding for me,” Kathryn said. “The goal is to make him independent someday.”

For individuals with Autism Spectrum Disorder (ASD), meaningful employment is a key part of a fulfilling life, but studies have shown that as many as eight out of 10 are unemployed or underemployed. David Ingram, ASNC Employment Supports Director, said that individuals with ASD improve their odds of obtaining integrated employment 400% through using job placement services from an organization such as ASNC while using Vocational Rehabilitation supports.

Businesses giving back

2014-11-07-adamricci-004From the employers’ viewpoint, providing job opportunities for individuals with autism is a win-win situation.

“The benefits that we have with David … it actually keeps us humble, grounded, and grateful,” said Lisa Giannini-White, the Director of Operations of Southpoint Animal Hospital in Durham, where David Roth works in the afternoons. “We thoroughly enjoy having David here.”

Terry Hamlet is President of S.H. Basnight and Sons, a small Hillsborough company that makes specialty hardware, doors, and frames. Terry said she and her employees benefit from working with Adam and another employee with autism. “I think that at the core of each person, they like the idea of doing something for other people. I think that in some way, that is happening here,” Terry said. “Hopefully they can feel good about the fact that they work for people who care enough about other people to give them an opportunity.”

Lisa said it was a part of Southpoint Animal Hospital’s original business plan to “offer opportunities to everybody.” Before David came to work for them, she did research about how to support individuals with autism and also consulted with his father about David in particular. When she talked to her employees about bringing David on, they were all for it, she said, and so she shared what she had learned.

Valued employees

But it’s not just about a feeling they are doing good; David is a valued employee, a consistent team player with great attention to detail, Lisa said. “He helps others see that well, gosh, I guess I could be more detailed, or I guess I could be a little bit of a harder worker.”

Alex Griffin also brings strong attention to detail to his position at the Center for Urban Affairs and Community Services (CUACS) at NC State University. Alex, a 30-year-old with high-functioning autism, does not need the assistance of an employment supports instructor, but he did participate in ASNC’s JobTIPS program, which emphasizes the development of social skills that are critical to identifying, applying for, securing, and maintaining employment. The group facilitator provides coaching and feedback for job interviews, encourages peer interaction, and helps members develop a broader community network.

Sheila Brown, Alex’s supervisor, said he does not really need supports at CUACS and performs well in a variety of duties. “He’s got a great attitude, and everything he’s done for us he’s done very well, very thoroughly,” she said. The reviews of assessments and testing that their work group do can be tedious and require a lot of attention, and Alex has found things they might have missed, she said. He also is very responsive to feedback and happy to do anything that is asked of him.

Alex said he would like all employers to know that “our value as employees isn’t overshadowed by the minor cost of accommodation.”

David Ingram said, “Individuals with disabilities, including ASD, experience less turnover than nondisabled individuals, allow access to numerous tax incentives, and return an average of $28.69 for each dollar invested in accommodations. Individuals with disabilities and their networks represent a $3 trillion market segment, and 87% of customers prefer to patronize businesses that hire employees with disabilities. I’m excited to see businesses starting to understand the value in hiring workers on the autism spectrum and contact us seeking support in placing someone with ASD with their corporation.”

Supporting the workers

2014-11-07-adamricci-007S.H. Basnight and Sons’ employees with autism are productive parts of the business because Terry matched tasks that the company needed to have done with their skills, just as she would with any employee, she said. Having patience and teaching how to complete tasks properly is necessary with any worker, she said. “There is no employee ever that is totally easy. The key is to work with people to help them do things correctly.”

“It’s very important for everybody – it’s important with our children, it’s important with our co-workers, it’s important in our businesses – when there is a weakness, to help that person develop that.”

Adam’s mother, Lorraine La Pointe, said Basnight has done an “amazing” job of supporting him. “They are just naturals. He operates on a visual schedule, and they have magnetic boards set up for his tasks. They are just on it.”

The visual task boards give Adam the opportunity to choose the order in which they will do the tasks for that day as well the independence to move from one task to another, Terry said. At Southpoint Animal Hospital, Lisa also set up visual supports for David, such as laminated sheets showing his duties in the restrooms.

Terry also said that employment supports instructors are a key to success for individuals with autism. With the job coaches supporting their clients well, there is more potential for growth in the job. Kathryn Lane, who has worked with Adam since July, said she has seen that; he has started recognizing more details at his job and times that tasks were not done correctly.

Part of the team

For employees without onsite support staff, many issues can be avoided with just a little research about autism and the employee in particular, said Sheila Brown, Alex Griffin’s supervisor at NC State. “We tend to have a stereotypical picture of what autism is, but it’s really more what autism is not,” she said. “Just be open, trying to make sure that the person is comfortable with what you’re asking them to do until they feel a comfort level with you and your staff.”

Adam feels very comfortable with his Basnight co-workers and Terry Hamlet; when he sees her in public, he greets her with a hug. She said they strive to make him a part of their team. Adam’s mother said they have gone a step further, including him in parties for holidays and birthdays; “they treat him like family.”

Terry says the effort was worth it.

“My life and the life of our company is richer for having had them here. I really believe that.”

For more information about Employment Supports, please go to www.autismsociety-nc.org/employmentsupports

’Tis the Season … for Opportunities!

 

Vickie Dieter is an Autism Resource Specialist in the Catawba Valley region and mom to a son with autism.

Many families who have children and other family members with an Autism Spectrum Disorder have a collection of war stories and battle scars (emotional and physical) associated with the holiday season. Children, youth, and adults with autism who already struggle with over-stimulation, change, and disruption are bombarded with a barrage of sights, smells, sounds, schedule changes, and challenging social situations during the holidays. While many families enjoy the holidays and find these sensory and social experiences exciting and pleasurable, they can cause increased anxiety and discomfort for people with ASD. But, as difficult as the season can be, the holidays offer unique learning opportunities for teaching your child coping, social, and academic skills.

The holidays were not pleasant for our child and family, especially during his first six years or so. I remember feeling helpless and desperate to do SOMETHING to make the holidays more tolerable. It helped me when I was able to shift my focus beyond the difficulties associated with the holidays and take a proactive approach to help my son have successful, positive experiences. Focusing my efforts on pinpointing the root of my son’s behaviors and researching strategies to help him cope in difficult situations helped me gain a sense of control. The perception I had of our family as prisoners of our son’s disability changed when the strategies I tried with him began to have positive results. Over time, my son became more and more engaged in holiday activities, and our family has enjoyed many traditions and celebrations with family and friends.

I hope the following ideas will help your child and family share a more meaningful and positive holiday experience:

Use visual images, objects, videos, songs, and foods associated with the holidays to explain abstract concepts and deeper meanings of holiday traditions and religious beliefs.

Use a nativity set to help your child understand the meaning of Christmas.

A dreidel can be used to explain a historical element of Hanukah.

Turkey, corn, and other foods (pictures, real food, or play food) can be used to represent the pilgrims and Native Americans coming together for the first Thanksgiving.

Incorporate the Kinara, a visual symbol of African history and heritage in discussions about Kwanzaa.

Help your child understand what other people are thinking and feeling through the use of social stories, books, and videos.

For example, the characters in Dr. Seuss’ How the Grinch Stole Christmas have exaggerated facial expressions that can make it easier for children to identify the characters’ feelings. When reading this book with your child, help him or her make the connection between the characters’ facial expressions and what they are feeling. Use the context of the story to discuss the reasons that the characters feel happy, sad, angry, afraid, etc. Talk about how the characters’ actions affect the feelings and thoughts of others in the story.

Use your child’s preferred interests to engage him or her in holiday activities.

For example, for a child who has a strong interest in tornados, you might modify The Night Before Christmas story to include a tornado that interferes with Santa’s flight from the North Pole.

If your child has an intense interest in flags, try to engage him or her in a game to match flags to their respective countries. Explore holiday traditions and practices of each country and compare how your family’s traditions and beliefs are alike or different from people in other countries.

Use holiday symbols and images to promote academic skills.

Sort unbreakable ornaments by color, shape, type, or category.

Label holiday items throughout your home with words written on sticky notes or post cards, e.g. Santa, tree, pumpkin, candle, gift, Zawadi, gelt.

Practice addition and subtraction using holiday objects as manipulatives.

Work on sequencing with pictures, objects, stories, etc. Drawing or building a snowman is a fun visual sequencing activity.

Strategies to teach coping skills

Employ strategies that have worked for your child in the past but are no longer necessary under normal circumstances. For example, if your child responded well to the use of visuals but has “outgrown” the need for them, consider trying visual schedules, cues, or gestures again to help him or her understand and prepare for unexpected, unfamiliar, or overwhelming situations.

Coping with sensory overload and changes in routine can be exhausting and stressful for individuals with ASD. Try to pay attention to “warning” signs that your child is feeling tired, anxious, or frustrated and use this opportunity to help him or her learn to ask for a break through the use of visual and verbal prompts, redirection, or calming strategies. Ask your child’s teacher what type of behavior management system is used in the classroom and try to use that familiar system or a modified version in other settings. The Autism Society of North Carolina Bookstore has some great books and videos about using visual supports to help your child recognize and manage his or her feelings and behavior. The Incredible 5 Point Scale is one of my personal favorites.

Learn to recognize when your child has had enough. All of the tricks in the book probably won’t help once your child reaches the dreaded point of no return – parents, you know what I’m talking about.

Happy Holidays!

Contact one of ASNC’s Autism Resource Specialists for additional information and resources. Vickie Dieter can be reached at vdieter@autismsociety-nc.org or 828-256-1566.

 

 

Surviving the Season: Tips to Help You Enjoy the Holidays

family-opening-christmas-gifts

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