On Being a Parent with a Special Needs Child
Sep 26, 2019 05:00PM
Kwon, MA, RYT, is a life coach and parent of a special needs son, ten-year old Noa,
with her ex-husband Justin. She shares her perspectives here and offers tips on
how to navigate the often-confusing role of special needs parents.
Lani admits that one of the most challenging roles she has ever taken on is that of a parent. “In truth, like anything else, parenting is what you make of it. Whether I am able to stay in each moment––whether I worry about the future or dwell on the past––impacts my ability to be a good parent, that is, one that nurtures, guides and accepts my child for whom he is.”
Lani credits a wonderful book that she read long before she was pregnant for influencing her thinking about being a parent. The book by Jon Kabat-Zinn, Wherever You Go There You Are: Mindfulness Meditation in Everyday Life, is an excellent book about thinking, speaking and acting in more skillfully aware ways. On the topic of children, Kabat-Zinn writes:
You could look at each baby as a little Buddha or Zen master, your own private mindfulness teacher, parachuted into your life, whose presence and actions were guaranteed to push every button and challenge every belief and limit you had, giving you continual opportunities to see where you were attached to something and to let go of it. For each child, it would be at least an eighteen-year retreat, with virtually no time off for good behavior. The retreat schedule would be relentless and demand continual acts of selflessness and loving kindness.
Lani finds that viewing a child as a teacher can help us learn how to be a more loving and compassionate parent, especially to one that is special needs.
Child as Priority
Since Justin and Lani were already established in their careers when Noa was born, they were able to adjust work schedules to make Noa a priority early on. They have continued to parent in this way, even both selling their homes to finance his therapies and moving in together in a larger rental house with a yard so that Noa has room to yell, stomp and be safely aggressive, without harming the neighborhood children or himself. They have hired an afterschool babysitter who is also a special education teacher that has been particularly helpful in helping him socialize and play.
They noticed that Noa’s speech was delayed and that he preferred playing alone or alongside other kids, but not with them, lining up and combining his toys in unique ways that other kids didn’t. They figured maybe he’ll be an inventor or that it was just part of his development. When he was in preschool, some hitting and outbursts happened, but it wasn’t until Noa was seven that they received the official diagnosis through his doctor and the school of high-functioning autism and ADHD.
Transitions from one activity to another are the most difficult. Lani reports that it works best to keep to comforting routines and schedules, but this is not always possible. Because Noa doesn’t seem to understand cause and effect yet, they redirect and refocus him on favorable behaviors with a rewards system of prizes and treats. They have been successful with a behavioral rewards chart system and social stories specially written for Noa that show him as the main character, doing what they want him to do and not what they don’t want him to do.
They carefully plan outings to family-friendly museums, restaurants or festivals, carefully gauging how long to stay and always having an emergency exit strategy. They have modified his diet, sleep schedule and medications to prevent or decrease outbursts. They’ve consulted psychologists and skills trainers at his school, medical doctors at Shriner’s hospital and Kapiolani Medical Center, a naturopathic doctor, spiritual healers and energy workers in private practice, and therapists and consultants in and outside of school.
Although parental fatigue and responsibility are, indeed, heavy at times, Lani describes “moments of pure bliss when Noa learns something new, when he wants us to chase him, play with him, tickle and cuddle him and he smiles or laughs out loud.”
Lani describes her and Justin’s priorities as “our child’s growth, learning and well-being, along with working towards creating a better world in which he and other children will grow up in.”
Lani Kwon, MA, RYT supports people in achieving their highest potentials, specializing in transformation and life re-design through her company, Creating YOUR Calling, LLC.
Lani is currently a faculty member at Happiness U, Still & Moving Center, and Sedona Hawaii. For more information, visit CreatingYOURCalling.com.She is developing an international online course and publishing a book, Creating YOUR Calling: How to Discover Your Authentic Life Mission, due to launch in 2020.
Parenting Transformative Explorations
Lani offers the following topics for parents to explore. Her upcoming book, Creating YOUR Calling: How to Discover Your Authentic Life Mission has a chapter on parenting.
- What is the one thing that is most important to you about your role as a parent?
- What factors contribute to your parenting choices?
- What do you wish you had known earlier about being a parent?
- How has having a child changed your life?
- What would you share with other parents about the challenges and joys of parenting?
- What resources have you and your partner found helpful in raising your child?
A Note for All Parents
Take Care of Yourself so You Can Take Better Care of Your Children
- Schedule self-care into your calendar including times for exercise, massage, naps or spending time in nature and doing things that give you joy.
- Discuss with your partner and family members what their priorities are. These will change periodically, and children and other relatives will have important input to consider when making plans that impact the ‘ohana.
- Make time for a date at least once a month with your partner or co-parent. Give yourselves the gift of time for reconnection and remembering why you love each other. If you are separated or divorced and don’t get along well, read Lani’s article “Co-Parenting vs. Parallel Parenting” from the April 2018 issue of Natural Awakenings Hawaii.
- Find areas of “wasted time” (such as too much time mindlessly watching TV or checking social media) to create time for consciously chosen activities that are more important to you.
- Discuss with your boss and/or company their policies and expectations for taking care of family emergencies before they occur. Plan ahead for who will take time away from work to care for the children, other family members, or elders to avoid chaos and resentments.
- Vote in 2020! Choose a candidate whose values align with your own, regarding the value of parents and our roles as both breadwinners and caregivers and that support community initiatives that help children of all backgrounds, skill levels and abilities.