How I Became My Child’s Advocate by Cynthia Zorn (Season 1, Episode 33)
What is mental wellness?
According to the World Health Organization, mental wellness is “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.”
In other words, mental wellness is about practicing behaviors and habits that allow you to thrive even in stressful situations. This doesn’t mean you don’t experience mental health issues; it’s more about achieving balance and having the tools to persevere through the challenges of life.
Enhancing mental wellness can look a lot of different ways but some characteristics of mental wellness may include resiliency, self-confidence, and the ability to maintain healthy relationships.
How I Became My Child’s Advocate
“I love my life,” were the last sweet words my daughter would whisper to me each night as she slowly fell into a restful slumber. During the nightmarish years to come, I longed to hear those words again.
As our daughter’s sleeping ritual changed from night to day, day to night. Her wakeful hours became less and less while nights were longer and longer. Our struggle to receive the answers to help our 9 year old, who could barely walk at times due to sleep deprivation, would struggle to appear normal at numerous doctor appointments and blood draws. Eventually, her symptoms becoming so sever that she was succumb to a wheelchair. The dreaded doctor appointments typically ended with the same answer…”normal”.
Be your child’s advocate by seeking pediatric professional advice. If you are not satisfied with the answer and the problem still persists, seek a second opinion or a different type of medical professional.
Do your own research if necessary. (Be prepared to back up any research suggestions to the doctors with facts.)
Keep a log or journal of your child’s behavioral changes which may include: sleeping or not, nightmares, restless leg syndrome, eating habits, psychosocial (depression, isolation, aggression, moody, weeping, negative, paranoia), changes in educational development and lack of memory recall. Physical: sleeps often during the day, especially when idle or watching TV or zoom calls, weight gain or loss, lack of hand eye coordination.
Normalcy was far from what our family had been experiencing for a year. Doctors eventually grasped at sibilance to what could be the problem, but as a mom who had homeschooled my studious, athletic, outgoing and funny child for 5 years, my heart and intellect told me otherwise. Becoming my child’s advocate, I kept searching….and then with more research I found it….sleeping, laughing and falling…Narcolepsy with Cataplexy! This can’t be. This is a lifelong neurological disorder…please God…no! Which was worse? This answer or no answer?
Stanford Sleep Center was where we met Mackenzie’s new sleep specialist and neurologist, Dr. Mignot along with his friendly little black dog, Bear, who also had narcolepsy with cataplexy. Dr. Mignot explained to our family that Mackenzie indeed had a rare neurological sleep disorder that does not have a cure. It is suspected that narcolepsy is an autoimmune disease that is trigged by either the flu or head injury. Both had occurred within the year to our young daughter. Several sleep studies soon followed along with a blood test for the marker. A confirmation was imminent.
Pediatric Sleep studies are key to evaluating a potential sleep disorder and sleep apnea.
Should your child need medications, be creative in administering and be compassionate.
Maintain a daily medication and sleep schedule.
Maintain a school schedule with fun and patience sprinkled in.
Advocacy does not end with striving to obtain and finally receiving a proper diagnosis. This is the moment when advocacy begins for your child.
Advocate for school accommodations in person or virtual (504, IEP).
Advocate with coaches, pastors, friends and family for events, outings and other activities that may require special attention for medication, activities and rest.
Advocacy at home includes family members being cognizant in areas that they can help support the child who has received a new diagnosis.
Family team work is key to addressing the mental, emotional, physical, spiritual and educational areas that will need to be redefined.
Some family members may be better suited to support in one area than another. Do not rely on one person to be and do everything for the child and the family.
Pay attention to sibling needs.
Provide a schedule and structure for the day.
Set short and long term goals for the future.
Discuss with your child what he or she would like for you to explain to the teacher, coach, family members and friends.
Educational support may include a 504 plan or IEP so reach out to the school counselor to discuss the protocol.
Virtual accommodations may be provided as well.
Your child's advocacy needs will follow your child to college. You are the best advocate they have. Seek support from the Disabilities or Wellness Office.
Find the things your child can do well and focus on that while maintaining open communication with your child for other new and exciting things they might be interested in.
Always be supportive towards your child “trying”.
As my daughter likes to recite, “Life begins outside your comfort zone.”
Maintain as normal home and outside the home environment, as possible.
Continue or start serving (with the child) in and out of your community.
Never lay blame or guilt on the child or other family members.
Do not argue in front of the child or siblings.
Ask the child what you can provide for them to help them be successful.
Prayer is the key to peace and patience. Our lives were then, and still are, filled with thanksgiving daily. The knowledge that God is with us and not against us in the effort towards raising a child that God created and intended her to be is at the forefront of our minds. And, as we have watched her grow with the strength of the Lord into an independent young Christian women, we are amazed at the lives she has touched and will touch as she strives towards her dream to serve others through the medical field. Sweet dreams Mackenzie.
Pray as a family. Encourage your child to pray throughout the day.
Be together as a family for dinner, activities, games, prayer.
