EXCEPTIONAL LIVES IN EXCEPTIONAL TIMES

Exceptional Livesin

Exceptional Times

By Margie Harding

ASK ANY PARENT, AND THEY WILL TELL YOU THE COVID-19 PANDEMIC HAS ALTERED THEIR LIVES. WHILE THE STRUGGLES WITH ONLINE EDUCATION, RE-ACCLIMATING STUDENTS, AND FACE MASKS FOR TEACHERS AND CHILDREN ARE REAL, THE CHALLENGES FOR SPECIAL NEEDS FAMILIES ARE MORE COMPLEX AND INTENSIFIED. WITH ENVIRONMENTAL CHANGES (CLASSROOMS WITH “HANDS-ON” LEARNING TO COMPUTERS OR IPADS) AND STRUCTURAL CHANGES (CLASSROOMS TO VIRTUAL CLASSES, ZOOM, ETC.), A CHILD CAN FEEL ANXIOUS AND UNCERTAIN, EXACERBATING OTHER ISSUES.

Each special needs child has unique perceptions of what one’s world is or should be. These needs are often met through a specific teacher or accompanying aid who walks them through what we might consider a very normal process, like turning on the computer, typing in our password, and going to the right program for whatever task is assigned.

Due to the pandemic, everything for every student changed. Any variation from normal is not always a welcome addition in the special needs world. Physical needs, along with medical or mental challenges, can create a huge set of problems for both the teacher and parents when they can’t be met.

Some school systems offered video programs for both academics and physical therapies. But parents, unlike teachers and therapists, are not trained to carry out the task with their child, despite their desire to do so. Training isn’t the only issue. A child doesn’t always respond well to a parent as teacher. They see their parents as “parents,” and regardless of how hard either side tries, the parent just cannot fill the teacher role, causing frustration for both parent and child.

These complications have created a virtual hole in the education of many of our special needs children. One of the biggest problems with the closure of schools during the pandemic is the lack of ability to sustain developmental targets and fundamental skill sets required for autonomous living.

Becky Poling from Ohio shared that her autistic daughter, Rachel, was a senior when COVID-19 hit. Rachel had been active in 4H since she was eight years old. She had learned to navigate different environments, developed social skills, and was active in her local youth group. Before the virus happened, she was planning to attend a program five days a week designed for young autistic adults to further education and job training and help her sustain her skills. She was ready for this change.

Then the pandemic happened, and everything was canceled. It was abrupt, and she was unprepared. Her daughter, Becky explained, “spiraled downward.” New medications were required to help her handle the grief and anguish she experienced. Plans for her now have changed due to a distinct regression of learning skills and emotional upheaval. Her parents enrolled her in a program for one day a week, and hopefully, Rachel will be able to move up to the former status over time.

It may be difficult to grasp a child grieving over the loss of her normalcy, but it happens. Dr. Bergina Isbell, Chief Medical Officer of Led Life, LLC., and mother of an autistic and attention-deficit/hyperactivity disorder (ADHD) son from Maryland, explains, “Whether it is the loss of a loved one to an illness, a job loss, or the loss of independence due to restrictions…. patients and family need to learn to grieve well.” [They need to] “allow themselves the time to go through the grief stages.” For a child experiencing loss, there is a sense of death. Those feelings are real and need to be worked through. Dr. Isbell offers her link for families who would like to reach out with particular questions: https://drbergina.as.me/discoverycall.

Adding to the problems of abrupt changes and feelings of loss, the very nature of this group of people, while there are exceptions, thrive best when they can give or get a hug or experience other physical touching, even if it’s just rubbing their arm in comfort. The physical realm they have always known is now non-existent. This only adds to anxiety and uncertainty, chinking away at their already fragile world.

Schools have begun to reopen with strict guidelines and precautions, and many special needs children are grateful, even while some teachers remain uneasy over the heightened possibility of contracting the virus. Students are delighted to return to some form of normalcy, even if it includes wearing a mask. They want to see their friends again and work in a structured environment. They admit learning online can be challenging. To be physically around teachers and mentors they trust and other students who are friends offers some level of stress release.

Yet masks do make a difference. Mrs. Bonne Lease, a Kindergarten teacher from Maryland who has several special needs children in her classroom every year, explains children aren’t necessarily opposed to wearing a mask, especially if they are following adult role models. It does become more difficult, however, to display facial expressions hidden behind the masks. Young children respond to body language, including looks that denote a disciplinarian expression or, conversely, a smile that signifies encouragement.

Callista Powell, a deaf/hard of hearing teacher from South Dakota, expounded further on the mask conundrum. Her students read lips and facial expressions to “hear.” When the face is covered, they cannot see what is being said. This creates an even greater chasm between peers, teachers, and the population at large.

She explains it’s vital these students continue language exposure and accessibility. “Ninety percent of deaf children come from hearing parents, who may or may not use sign language for communication.” While technology is wonderful, there are frustrations and barriers for deaf and hard of hearing children. Visual aids are very important in this environment to enable the deaf child to gain an understanding of a concept, especially without the aid of being able to read the teacher’s lips.

Children challenge us. It’s important to model what we believe because, as Mrs. Lease explains, “Children learn by watching others.” Further, she believes this begins from the moment they walk off the bus in the morning. Expectations, routines, and a love of learning can be seen through the eyes of even the youngest student. Purposeful planning ensures meaningful learning, even when it looks different from what we’ve always done.

Clearly, the effect of the pandemic has been profound. Yet, there are ways to manage stress and sustain some level of calm and control when there are numerous unknowns. According to the article Parenting Children with Special Needs during COVID-19, relying on strategies that produced the best outcome before the pandemic is a place to start, including:

• Maintain consistent medication, mealtime, and bedtime routines • Present consistent visual clues to upcoming activities or events • Keep consistent scheduled quiet time • Offer consistent praise for a job done well

Additionally, contributors to this article add these ideas:

• Be purposeful in conversation, using words which clearly define expectations • Be involved with your child’s education by keeping in touch with your child’s teacher • Discuss with your child what they do in school each day • Encourage your child’s teacher and the staff when possible—a positive attitude goes a long way • Ask questions for clarification • Be an advocate for your child, gleaning all the information your child needs specifically • Use all the role models you have at your disposal for success • Spray essential oils like lavender, lemon, or peppermint mixed with distilled water on the outer layer of masks to help with anxiety (be aware of possible allergic reaction) • Allow your family to slow down without guilt • Provide additional personalized sensitivity for increased anxieties and emotional distresses

Students aren’t the only ones needing to manage stress, however. Both teachers and parents are in similar need. As parents, it’s vital to remain positive, healthy, and remember to schedule time for fun, because these can help alleviate stress. Schedules can be daunting, but if you are burned out, no one can be productive.

Other tips and ideas for managing stress include:

• Take breaks from being a teacher and just be a loving parent • Stay connected to other parents and support groups with special needs children • Stay connected to family, friends, and loved ones, allowing them to help you when you need it • Limit time listening to or watching the news • Distance yourself from negative people • Embrace the changes, accept the limitations, and let go of unnecessary expectations • Focus on your strengths rather than what you consider your weaknesses COVID-19 changed the world. We are all adjusting to changes every day. As special needs parents, teachers, and special needs students, the goal is to press onward. Changes are inevitable as new information is gathered and disseminated daily.

You are resilient! You can do this successfully when you stay positive, focus on the good, be kind to yourself, and believe in one another.

REFERENCES:

Klass, Perri, M.D “The Pandemic’s Toll on Children with Special Needs and Their Parents” The New York Times, 27 July 2020. https://www.nytimes.com/2020/07/27/well/family/children-special-needs-pandemic.html Mayo Clinic Staff “Parenting children with special needs during COVID-19,” 21 July 2020. https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/special-needs-parenting-covid-19/art-20487665 North, Anna. “We need to talk about what school closures mean for kids with disabilities,” 6 August. 2020. https://www. vox.com/2020/8/6/21353154/schools-reopening-covid-19-special-education-disabilities

Stein, Perry and Strauss, Valerie. “Special education students are not just falling behind in the pandemic — they’re losing key skills, parents say” The Washington Post, 7 August 2020. https:// www.washingtonpost.com/local/education/special-education-students-are-not-just-falling-behind--theyre-losing-keyskills-parents-say/2020/08/05/ec1b91ca-cffd-11ea-9038-af089b63ac21_story.html

INTERVIEWS:

Isbell, Dr. Bergina. Personal Email Interview. Chief Medical Officer of Led Life, LLC. and Special Needs Mom. Ellicott City, MD, 30 September 2020 Lease, Bonnie. Personal Email Interview. Kindergarten Teacher, Greensboro, MD, 27 September 2020 Poling, Becky. Personal Email Interview. Special Needs Mom, Marysville, Ohio, 24 September 2020 Powell, Callista M.Ed. Personal Email Interview. Special Needs Teacher, Spearfish, SD, 26 September 2020

Margie Harding is a wife to Charles, mother to five adult children, grandmother to 17 grandchildren, and a loyal friend and writer. She has an AA degree in Early Elementary Education and, while not currently enrolled in any formal school environment, is a perpetual student in a variety of different subjects! She enjoys quilting, reading, and learning new things. Her passion is creative writing, particularly in special needs, but also in the Christian genre. She dabbles in other genres, as well.

Website: www.margieharding.com LinkedIn: https://www.linkedin.com/in/margie-harding-6212a859/ Books: https://www.amazon.com/s?k=Margie+harding&i=stripbooks&ref=nb_sb_noss_2