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.

Promoting Healthy Eating

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This article was contributed by Jessica B. LeBoeuf, Ph.D., a member of ASNC’s Clinical Services Department.

 

“When he’s hungry enough, he’ll eat.”

How often have we heard this from well-meaning family, friends, and medical providers? While most young children exhibit food preferences and some food selectivity, other children display persistent and highly restrictive eating patterns. Almost 70% of individuals with Autism Spectrum Disorder exhibit selective and restrictive eating patterns. Some children’s food selectivity may be so severe that they only eat one or two foods. Extreme eating patterns can lead to caloric and nutritional deficits, which are especially concerning in young children as growth and brain development may be affected.

In addition to the health and developmental effects of persistent restrictive eating patterns, it also causes disruptions to family life and may interfere with the child’s daily functioning. Eating only certain foods may affect the social activities that a child participates in. Families may be forced to cook special meals each day or to eat at only certain restaurants, if at all. Planning for school lunches can become challenging as well. Mealtimes are often stressful for the family as there may be disagreements between the adults on how to get the child to eat, along with crying and other avoidant behavior by the child.

Children and adults with feeding difficulties may display the following behaviors:

  • Eating a limited variety of foods that might be a specific brand, shape, texture, or color or from only one food group
  • Difficulty advancing food texture, such as resistance to moving from pureed foods to table foods, or texture selectivity, such as only eating crunchy foods
  • Eating only with fingers or specific utensils, dishes, or presentation of food
  • Disruptive behaviors such as gagging, batting the spoon, crying, swiping food, or self-injury

Parents of selective eaters are often advised to withhold the child’s preferred foods under the notion that the child will eventually eat. However, this advice may be misguided and even harmful, particularly when used with children who are highly selective eaters. I know a family whose child only ate a specific fast-food brand pizza, with the pizza needing to be fresh from the restaurant at each meal. This certainly was interfering, particularly as his mother traveled across town to deliver a fresh slice of pizza to the child each day at school. The parents were concerned about their son’s eating behavior and aware that this eating pattern was not healthy or functional and was difficult to sustain. The mother followed suggestions to withhold the pizza, under the assumption that the child would eventually eat other foods, “when he’s hungry enough.”  The problem was, he didn’t start eating other foods and went days without eating anything at all.

Withholding preferred foods is not always effective in getting a person to eat non-preferred foods and can result in further complications. This specific child not only refused non-preferred foods, but he also started refusing liquids, ultimately requiring hospitalization for dehydration. While this is an extreme example, just withholding preferred foods is not a surefire solution to increase food intake, and may even be harmful and contraindicated. However, there are safe and effective strategies that can be used to increase food variety.

 

What can I do to help my child eat a wider variety of foods?

Medical evaluation

Start with a thorough medical evaluation. Some restrictive eating habits are related to current or a history of medical conditions such as reflux, food allergies and intolerances, gastro-intestinal abnormalities, oral motor delays, and swallowing problems. Makes sense, right? If eating makes us feel bad or is effortful and difficult, we’re less likely to want to do it. Ensure your medical provider has ruled out any medical complications related to food consumption and all identified medical conditions are being effectively treated and monitored. Consult with your child’s physician or nutritionist on the recommended daily caloric intake for your child. After a thorough medical evaluation has been completed, you can promote healthy eating habits with positive and effective strategies.

Mealtime routine and structure

  • The family, including the child, should eat meals and snacks at about the same time every day. Eating and mealtimes should be predictable for your child.
  • Have your child sit at a table and in the same seat for meals. Make sure the seat and table are an appropriate size and height for the child. The child should be comfortable sitting at the table.
  • Limit your child’s “grazing” and snacks between meals. When people eat throughout the day, they are often less hungry and therefore less interested in eating at mealtimes.
  • Have a time limit for the meal, which should not exceed 15-30 minutes for young children. Developmentally, most young children are unable to sit for long periods of time and may engage in disruptive behaviors when made to sit too long.

Food presentation

  • Some children may need to get comfortable with having non-preferred foods near them, either near their plate or even at the table. Just having the child sit at the table with family members during mealtimes will provide the opportunity for exposure to new foods.
  • Initially, present very small amounts of novel and non-preferred foods. We don’t want the child to be overwhelmed, so don’t fill the plate with a new food. For example, just put one pea on the plate. As the child becomes successful with accepting new foods, slowly increase the amount of food presented to the child.
  • Be persistent! It can take a child trying a new food 10-20 times before she readily accepts it.
  • Provide choices of novel and non-preferred foods. Allow the child to have some control over the food they consume. For example, ask your child whether they would like to eat chicken or pork at dinner. Similarly, if two vegetables are cooked, present the two options to your child and prompt him to pick the vegetable to put on his plate.
  • If your child’s diet still includes jarred baby food, consider making preferred pureed foods. While this is more time consuming, the homemade pureed foods will taste the same as the regular texture foods that are already prepared in the home. Once the child is used to the taste and texture of homemade pureed foods, advancing the texture (that is, moving to more solid food) should be easier because the taste will not change, only the texture. Note: Ensure that your child is safe to advance food texture by consulting with her medical professional.

Develop reward systems to encourage healthy eating

  • Some parents may think, “Why should I reward my child for something she should already be doing?” Children who are selective eaters are often not internally motivated to expand their food repertoire. Additionally, some children don’t recognize hunger cues at all. Therefore, we must provide the motivation.
  • Reinforce trying new foods. Reinforcement can include extra electronics time after the meal or simply a lot of praise and social attention. You can even use a token board or sticker chart to keep track of bites and then provide rewards at certain levels. Find what works for your child.
  • A natural reward may be allowing the child to leave the dinner table early for consuming the food. For example, you tell your daughter once she finishes her meal, including the 3 green beans (non-preferred), she can leave the table to go play. Otherwise she will stay at the table until the time limit has been reached. Use of a timer may be helpful to signify the end of a meal. Ensure the amount of food on the plate is appropriate for the child’s development and be mindful to not encourage overeating. (Be careful using only food consumption criteria to end a meal, because this may be difficult to follow through. For example, you don’t allow your daughter to leave the table until she eats all of the green beans on her plate. Since we cannot make another person accept, chew, or swallow food, and if your child has a lot of stamina and does not want to eat those green beans, she’ll likely wait you out. In the end, it’s either sitting at the table all night (which is not realistic and certainly not recommended) or allowing the child to leave the table without following through (also not recommended). These contingencies often lead to frustration for both the parent and child.)
  • Celebrate the success! Make a big deal out of appropriate mealtime behavior. Appropriate mealtime behavior may be taking a small bite of a new food, sitting at the table for 5 minutes, or tolerating a new food on their plate. Don’t be discouraged with slow progress; developing long-term, healthy eating habits takes time. Provide a lot of attention and praise to appropriate mealtime behavior.

Positively frame your language and limit attention to inappropriate mealtime behavior

  • Mealtime with children who are selective eaters can be a stressful and frustrating experience for both the child and the parent. Avoid using reprimands to correct the child’s mealtime behavior. Instead, tell him what he should be doing. For example, your son is tapping the fork on the table and not eating. Instead of saying “Stop playing with your fork!” say, “Pick up your fork and eat.” There are a lot of things a child shouldn’t be doing at the dinner table, so let’s tell him what he should be doing.
  • Do not talk about your child’s selective eating in front of her. Similarly, avoid lengthy discussions with your child on why she will or will not eat certain foods. Ask family members to limit discussion of selective eating in front of the child. We don’t want the child to learn to get attention from other people through selective eating. Conversely, provide a lot of positive attention when the child eats new foods.
  • Limit attention to inappropriate mealtime behavior, such as gagging, crying, and vomiting (not due to illness or choking). Remain calm when these behaviors occur and avoid removing the child or the food from the table following inappropriate behavior. Many children who are selective eaters do not want to sit at the table and be exposed to non-preferred foods. For example, if you remove peas when your son starts crying and allow him to leave the table, he will be more likely to cry the next time non-preferred foods are presented.
  • All family members should model appropriate eating behavior for the child. While most people have food preferences, it’s important to be mindful how we, as adults, respond to our non-preferred foods. Family members should avoid making negative comments about their own food preferences (for example, saying “that looks gross” or “broccoli tastes terrible,” making faces, or plugging your nose). Instead, talk positively about food. Children pick up on the behaviors of those around them!

 

I’ve tried it all to get my child to eat, but it doesn’t work. Now what?

The above strategies will work for many selective eaters. However, other children may need more specialized interventions. If your child continues to display restrictive eating patterns, contact a professional who is experienced in treating children with feeding disorders, such as a psychologist, Board Certified Behavior Analyst, or speech language pathologist.  If your child is not meeting their nutritional and/or energy needs, has experience significant weight loss, has a nutritional deficiency, is dependent on tube feedings or oral supplements, such as Pediasure or Boost, or their eating patterns significantly interfere with their daily functioning, contact your child’s physician.

Jessica B. LeBoeuf, Ph.D., a member of ASNC’s Clinical Services Department, can be reached at jleboeuf@autismsociety-nc.org.

ASNC’s Clinical Services Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential and other community-based contexts. We also deliver workshops to parents and professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and enhancing social understanding in individuals with autism.

 

Learn more

Here are some recommended books on this topic from the ASNC Bookstore:

Improving Speech and Eating Skills in Children with ASD

Eating for Autism

Special Needs Kids Eat Right

I’m Hungry, I’m Hungry, What Shall I Do?

Clearance CD:

Picture This: Visual Foods (Photo Software on CD-ROM) 4 left in stock

Clearance books in limited quantities:

Special Diets for Special Kids Two

Gluten/Casein Free Grocery Shopping Guide

 

College Options for Students with ASD

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This article was contributed by Nancy Nestor, an Autism Resource Specialist in the Charlotte region, an autism mom, and a former teacher.

This is the time of year when many high school students and their families are thinking about the next steps in their lives – touring colleges, taking the SAT or ACT, and starting college applications. It can be anxiety-inducing as well as exciting. For students with Autism Spectrum Disorder (ASD), there may be some special considerations. We will go over these, as well as potential supports and resources.

 

Is your child ready to live independently?

If you are contemplating sending your teen off to college, the Guardianship Capacity Questionnaire is useful to assess readiness for the independence that adulthood brings. The form, which you can find at www.nccourts.org/forms/Documents/846.pdf, asks questions about the person’s ability to independently use language and communicate, take care of their nutritional needs, maintain good hygiene and health, stay safe, live by themselves or in a group, seek and maintain employment, handle finances, and self-advocate. Completing the form will help you know what to work on this year with your teen.

 

College in a traditional program

Once someone graduates from high school with a diploma or an Occupational Course of Study Diploma, they can continue on to college, if that is a reasonable choice for them and they have the grades to support college admission. College students with ASD can still receive academic supports if they meet the following conditions:

  1. They have a current medical diagnosis of autism.
  2. They contact the Office of Student Disability at their college or university to share that they have a disability.

Education in the public school system must be free and appropriate. According to the US Department of Education, Office for Civil Rights, colleges and universities are not required to provide FAPE, free and appropriate public education; however, they must provide appropriate academic adjustments to avoid discrimination against a student on the basis of their disability. Also, if a college or university provides housing to nondisabled students, the same or comparable housing must be accessible to those with disabilities at a location that is convenient and with the same cost.

Although the education is no longer free, a college or university cannot charge extra for providing academic adjustments or for participation in its programs or activities. Once the office of student disability has been notified and given the appropriate information, staff members can work with the student to determine the necessary academic adjustments. Just as with an IEP, the adjustments will be individualized to the student’s needs. In the college setting, academic adjustments include: “auxiliary aids and services, as well as modifications to academic requirements as necessary to ensure equal educational opportunity. Examples of adjustments are: arranging for priority registration; reducing a course load; substituting one course for another, providing note takers, recording devices, sign language interpreters, extended time for testing, and, if telephones are provided in dorm rooms, a TTY in your dorm room; and equipping school computers with screen-reading, voice recognition, or other adaptive software or hardware.”

Also, the Office for Civil Rights states that “In providing an academic adjustment, your postsecondary school is not required to lower or substantially modify essential requirements. For example, although your school may be required to provide extended testing time, it is not required to change the substantive content of the test. In addition, your postsecondary school does not have to make adjustments that would fundamentally alter the nature of a service, program, or activity, or that would result in an undue financial or administrative burden. Finally, your postsecondary school does not have to provide personal attendants, individually prescribed devices, readers for personal use or study, or other devices or services of a personal nature, such as tutoring and typing.”

To learn more about students’ rights, go to http://www2.ed.gov/about/offices/list/ocr/transition.html.

 

College Through a Comprehensive Transition Program

Students who are graduating with a Certificate of Attendance or an Occupational Course of Study Diploma may be appropriate candidates for one of the Comprehensive Transition Programs. The “Think College” website, www.thinkcollege.net, lists  a variety of two -and four-year programs that are housed in universities, colleges, community colleges, and technical schools across the state.

They offer a variety choices for students, including on-campus, fully inclusive housing with the ability to take regular classes as an audit, partial inclusion in various settings, or living/working within a self-contained group. In some of the programs, the students will receive a certificate for course completion, but a few allow students to work toward a degree.

Because of the success of Comprehensive Transition Programs, many community colleges are strengthening their compensatory education programs to include supports for students on the autism spectrum. Compensatory education classes are inexpensive and sometimes free. If moving away from home is not yet an option, it would be wise to research community college options near your home to see whether they could provide reasonable supports. Many students enroll at the community college level to gain skills they will need for higher level classes and also to get basic requirements out of the way for their major at a university level.

 

Applying for Scholarships and Grants

Although there are no autism-specific scholarships available for North Carolina residents at this time, students with autism are free to compete for scholarships. Be sure to check several sources, such as your school guidance counselor, local organizations, parents’ employers, and the state. Many colleges and universities also offer scholarships.

Given the academic struggles that often accompany autism, many students do not have the grade-point average or the community involvement to be considered for scholarships. In cases like this, they can apply for federal and state grants. Before students can apply for these funds, they must fill out a FAFSA, or Free Application for Federal Student Aid at https://fafsa.ed.gov/.

To learn more about financial aid, go to www.collegescholarships.org/grants/disabilities.htm. When looking into a Comprehensive Transition Program, be especially careful because some programs do accept Pell Grants, but not federal student loans.

If a young adult has Innovations waiver funds, at least one NC program can use the funds toward education. Beyond Academics, a CTP Program at UNCG, is a state-accredited service provider and can work with any Managed Care Organization (MCO) in the state. Although Innovations funds cannot be used for class tuition and books, they can be used for supplemental support as required in their Individual Support Plan, which has been approved by their MCO.

 

Learn more

Upcoming workshops

  • Preparing for College Starts at Home: Webinar online on Tuesday, Sept. 13. Register now
  • Considering College? Prepare, Plan, Succeed!: Workshop in Raleigh on Tuesday, Sept. 27. Register now

Contact an Autism Resource Specialist near you.

Find books on autism and college, employment, and transitions in the ASNC Bookstore. Two we especially like are Life After High School and Smile & Succeed for Teens.

 

Nancy Nestor can be reached at nnestor@autismsociety-nc.org or 704-894-9678.

Thank You, from One Mom to Another

 

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Sherri Krewson Garner, Leader of the ASNC Crystal Coast Chapter, shared this post about her gratitude for another mom and leader.

I want to express my deepest gratitude to another chapter leader! In 2000, after going through a divorce, I moved from Lincoln County to the coast of North Carolina to be near my family. I had been my daughter Sydney’s advocate since she was diagnosed at age 2 as “mentally delayed” or having a mild intellectual disability. But over the years, things didn’t add up; she just didn’t seem to fit in that category. When Sydney was 11, I heard about Asperger’s Syndrome, and this seemed to fit.

As the years went on and the struggles continued, I found a local support group and we started the Crystal Coast Chapter of the Autism Society of North Carolina. I started out as secretary, became co-chair, and am now the leader of the chapter. As a chapter, we started with a support group meeting once a month. Then as we saw what families needed, we added meetings on topics such as IEPS and school issues as well as social activities. Once a month, we have a social event called Friends & Fun to celebrate birthdays, and we also have Music with Mary, a casual music therapy class. Our biggest fundraiser, the Crystal Coast Run/Walk for Autism each May, raises money that enables us to do these special events at little to no cost to families.

Being a part of the chapter was a help to me and my family, but when Sydney was 18, she began running away from home at night. I would follow her in my car down the highway and call the sheriff. They told me what I already knew: They couldn’t make her come home because she was 19 and an adult. But was she? Could she make the right decisions? Could she take care of herself? She didn’t have a job and hadn’t graduated school. I spent nights crying, feeling that after 18 years I had failed because in every IEP, my ending goal was for my daughter to graduate from high school. It sounded simple, but it wasn’t, and it was my goal.

Sydney said she wanted to live with her dad, so in the spring of 2015, I obliged and had him come and take her to live with him at the other end of the state. Even though we were divorced, he and I continued to work together for her sake and remained supportive of one another. But he was taking on a role that was foreign to him; until you deal with the issues every day, day and night, you can never truly understand life as a parent with a child on the spectrum. Sydney started having a lot of trouble at her new school and in her new home life with a parent new to dealing with these issues.

Sydney’s dad called asking what to do. I felt just as helpless as he did; I had walked in those shoes but did not have an overnight fix. So I got on my computer at 11 o’clock that night and searched for the ASNC Chapter in Lincoln County, thinking they could provide some support. I proceeded to write an email to Ginny Hall, who co-leads the Lincoln County Chapter alongside Kristie Robertson, asking her to please reach out to Sydney’s dad because he needed help and I was a six-hour drive away.

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Ginny and Sydney

Ginny was in my eyes sent from God! She helped my daughter so much, especially on school issues. They had hard times, but she never gave up on my daughter. She worked with Sydney’s father to find the resources he needed, including in-home treatment and medications. Ginny also became a true friend and confidante to Sydney.

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Sydney and her mom, Sherri

This June, I traveled to Lincoln County for my daughter’s high school graduation and to meet Ginny for the first time. I had been feeling so guilty, and thanked her for all she had done. Ginny said, “It takes a village to raise a child.” It means so much to me that she took time away from her family to help my family. Ginny Hall, I thank you as one autism mom to another and as one chapter leader to another!

It does not matter how we get to the IEP goal, just that WE DO! I only hope I support other families in my chapter in the same way.

 

Have you found an ASNC Chapter to be your “village”? The Autism Society of North Carolina has more than 50 Chapters and Support Groups around the state. These 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.

ASNC Chapters provide a place where you can:

  • Receive support and encouragement from families facing similar challenges
  • Share experiences, information, and resources
  • Raise awareness about the needs and the abilities of individuals with ASD
  • Learn realistic, practical solutions for autism-related concerns
  • Feel welcomed, accepted and understood

 Click here find a Chapter near you.

Jewels for the Journey

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This article was contributed by Gwen Capers-Singleton, an ASNC Autism Resource Specialist in Charlotte and mom to a son with autism.

Now that school is almost out and the weather ideal, I have started training for another marathon. As a mother of three, including an adult son with an Autism Spectrum Disorder (ASD), running is my de-stressor. No matter the issue, I can solve it on a good run. While I do not have the running physique or any special athletic skill, through discipline, determination, and a customized training plan, I have discovered that I actually enjoy distance running. There is nothing like clearing the head over 13 or so miles – not to mention the change of having my kids and husband cheering me on as I gather the last ounce of strength to sprint (for the photo op) past the finish of 26.2 miles. When you cross the finish line, the sense of accomplishment and empowerment is amazing. It is in that space that I feel confirmation that I am indeed equipped to handle anything: autism, transitions, the 2016 elections – a walk in the park!

Running has added so much to my life and helped me become a better advocate and teacher to my son. It seemed like the hardest lesson for me was “pacing.” Inevitably, I would start out too fast and bonk (hit the wall) or injure myself at the end. Interestingly, I recalled hearing a similar sentiment in another area of my life. An educator gave me this exact advice when my son was very young: “Pace yourself, as this will be a journey.” Needless to say, I now understand and have learned to practice patience. I am now extremely mindful of my “pacing” not only for running, but also in my efforts to support my son.

What started out as a way to manage my health has become essential. Pounding the pavement has awarded a number of helpful gifts and skills: confidence, inner peace, perspective, flexibility, negotiation skills, mental toughness, and creativity, to name a few. All have served me well as an ASD advocate. Here are a few other jewels gathered along the way:

 

 

Running lesson: The hardest step is the first step.

Jewel for the journey: Running is very simple. To get started, you just lace up your shoes and head out the door. But at times, it seems difficult to get moving in the ASD lane.

Whether your child was recently diagnosed, is struggling through a transitional milestone, or is exhibiting undesirable behaviors, knowing where to start can be overwhelming and paralyzing. But remember, your child can’t get to the finish line if he or she never makes it to the start. So after you have taken the necessary time to work through your emotions:

  • Educate yourself. Knowledge is power.
  • Get organized. Keep notes and important documents in one place.
  • Set goals and break tasks into smaller steps.
  • Seek resources. Ask for and accept help.

 

Running lesson: You don’t have to be talented, just determined.

Jewel for the journey: During a time of great need for services and supports for our kids, passionate teachers with limited resources, and wait lists for community support services of 5-7 years, we, as parents and caregivers, must be unwavering in our commitment to finding a way to meet the needs of our children. If your child is denied services or placed on a wait list:

  • Ask questions to understand the reasons for denial.
  • Keep a copy of the rejection letter for your files.
  • Build your knowledge on the appeals process and file an appeal.
  • Be persistent, but positive.
  • Use natural supports, including family members, friends, co-workers, local church members, neighbors, and supportive acquaintances. For example, parents of older teens and/or adults looking for employment might consider volunteering at their local church pantry or working out an internship with a neighbor who also happens to be a small businessman. Natural supports are a way to build job skills and could lead to long-term employment.

 

Running lesson: Sometimes things just don’t go as planned; accept it, learn from it, and move on.

Jewel for the journey: Someone great said: If you fail to plan, you plan to fail. Planning is an essential part of the ASD experience at home, school, and in the community. To set your child up for success:

  • Assess whether your child has the necessary skills for the activity. If not, first teach said skills.
  • Be consistent in your approach in all settings.
  • Use a visual schedule.
  • Have a backup plan that includes calming strategies in case a meltdown occurs.
  • If a meltdown occurs, consider what happened before, during, and after the meltdown.

Be flexible and make adjustments accordingly. Tweak the plan and try again. Life’s challenges can either defeat you or develop you. Refuse to be defeated.

 

Running lesson: There will likely be faster runners; learn from them.

Jewel for the journey: As you travel on this journey, you will see kids across the spectrum. Some will be more independent and higher functioning, and some will not. We can always learn something from each other’s experiences.

  • Don’t waste time comparing your child’s abilities and feeling hopeless.
  • Celebrate and accept the quirkiness of your child.
  • Conversely, there is no room for judgement toward anyone on the spectrum.
  • While ASD can present very differently, we all have opportunities for growth.
  • Rely on the positive resources in your life.

 

Running lesson: Runners support each other.

Jewel for the journey: Some days, you will feel overwhelmed, stressed, or downright discouraged. Know that isolation helps no one. We are walking, and with some of our kids running, through this journey together. No one can run on empty, and no one can do this alone. ASD parents want to share their experiences with and receive support from others.

  • Find comfort in knowing that someone else understands what you are going through.
  • Exchanging ideas and experiences can help you better manage the day-to-day challenges.
  • While other parents are not trained counselors or therapists, they can be an invaluable resource.
  • Parents can provide information on summer camps, local schools, therapists, autism-friendly dentists, doctors, recreational activities, and more.
  • Other parents can help you be more hopeful about your child’s ability to reach their fullest potential.

Seek out other ASD parents and hold onto these relationships. ASNC Chapters are a great place to start. Above all, know: You are not alone.

 

Running lesson: Don’t take yourself too seriously. Enjoy the journey.

Jewel for the journey: As a parent of a child with ASD, having a healthy sense of humor is essential. With the unique challenges of our kids, there is indeed enough heavy lifting. You have to admit, our kids can say and do some amusing things.

  • Laughter is restorative and reflective.
  • Instead of dwelling on the mishaps or embarrassing moments, look back with a chuckle. As you reflect, see the humor in the moment, which will also help you retain any wisdom from the experience.
  • Celebrate all milestones, big and small.
  • It just feels good to laugh, and IT IS OKAY TO LAUGH.

Aside from running, one of my best teachers has been my beloved son, Jahlani. Jahlani is a young man of few words, but he conveyed essentially that while the aforementioned life lessons are meaningful, some of us need a more tangible reason to run.

The scene is a Special Olympics running event. It’s hot, and Jahlani is not feeling like participating in his running event. So Dad and I had to pull out the backup motivation plan. Dad walked down to the finish line and held up Jahlani’s iPad. The iPad that had mysteriously disappeared for a few weeks. Results: Jahlani took home the gold!

While our journey is not a sprint, but more like a marathon, we can joyfully embrace the jewels along the way!

 

Gwen Capers-Singleton can be reached at gcapers-singleton@autismsociety-nc.org.

 

Have a Happy Mother’s Day – Really!

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This article was contributed by Judy Clute, an ASNC Autism Resource Specialist in Raleigh and mom to a son with autism.

In the month of May, our thoughts turn to Mother’s Day and how we will celebrate Mom and all that she does all year. On this one day, moms are often given gifts of appreciation and perhaps a day to whatever they want to do. We feel pampered and special. But as a mom of two adult children, one of whom has autism, I know we often forget how important it is to take care of ourselves every day of the year so that we can be the mom our families need us to be.

Many articles have been written about research showing that mothers of children with autism are often in poorer health and more exhausted than mothers whose children do not have disabilities. Their stress level has even been compared to that of combat soldiers with PTSD. I can tell you from raising a child with autism for 23 years that the research is true. As an Autism Resource Specialist, I speak to parents on a daily basis who often do not even realize they are neglecting themselves, because they are so focused on providing the best care for their children.

Moms feel guilty if they take time for themselves. They think no one else can do it like they can; no one will care for their child exactly like they do. Well, they’re right. No one will handle your child’s day like mom, but the reality of it is, if we don’t take care of ourselves, we cannot take good care of our families.

What can we do to deal with the stress of the day-to-day demands we encounter raising our children? Here are a few things I encourage you to consider:

Take care of yourself first

One thing I learned over the years is to get up before my children. I wake up about 30 minutes before they do just to get myself together before I have to help them start their days. Mornings are often stressful, and being ready before my children are awake makes things less chaotic.

Find a support network

Parents of children with autism can feel so isolated. Find a group of people who can support you and with whom you feel comfortable sharing your experiences. Just talking to someone who will listen without judgement can be uplifting. Talking to other parents who have walked in your shoes is not only a way to feel connected but also a way to network and see how others handle similar issues in their lives. Surround yourself with positive people.

Take time away

We can’t imagine leaving for a few minutes to take a break, let alone for a few days. But sometimes respite care for the caregiver is what is needed. If this means you have to leave your child with your spouse, another relative, or a friend so you don’t fall apart, then do it. If you are struggling to leave for more than even a few hours, find something you enjoy doing, such as going for a walk, reading a book, or restarting a hobby you used to enjoy. The point is to find some time for yourself, perhaps just to breathe.

It’s OK if you don’t get it all done

Life is busy already with work, home, and all that school expects of our children. Many families that have children with autism also must add therapies and programs into their schedules. Pace yourself. Remember, it’s OK to let something fall off the plate once in a while. Not every day can be about therapy. A child with autism is first and foremost a child and needs to play and be a child. So on those days when you just can’t get something done or if you can’t make it to a therapy session, do not feel guilty. Take one day at a time and don’t sweat the small stuff!

Keep your sense of humor

A good laugh goes a long way. It’s not only good for your health physically and emotionally, but it also helps build relationships within your family and friends.

Focus on what’s most important

Don’t spend all of your time and effort on the child with autism at the expense of your marriage, family, other children, or friends. The best treatment for your child is a happy, healthy, and loving family.

To read more on this topic, check out Parenting Across the Autism Spectrum by Maureen Morrell and Ann Palmer, in the ASNC Bookstore.

Judy Clute can be reached at jclute@autismsociety-nc.org.