Jewels for the Journey

gwen and son

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.

 

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