SOUTH PLAINFIELD - With the myriad of life changes that have been cast upon the world of late by the mysterious COVID-19 virus, educating children at home has been one of the many challenges facing parents and educators. With only a week's notice, most educational institutions across the country transitioned to virtual learning. On March 16, most students logged onto their Chromebooks and home computers or laptops, and school was in session without missing a beat. But what about children with learning disabilities and special needs?
Most children with special needs thrive when following a daily routine without change or deviation from the pace of the day. At school, there is a trained staff of special education teachers, physical therapists, occupational therapists, speech therapists, behavioral therapists, nurses and classroom aides, armed with therapy equipment and tools to assist in each day's lesson plan. Professionally trained school therapists see the child for 30-minutes or so and another specialist takes over. It's a team effort that most parents are an active part of through conferences, emails and constant communication.
How are parents handling now having to homeschool their special needs child? Many have full-time jobs they are trying to hold onto with video conference calls conducted from the quietest corner of their home. Others have to go to work as they are essential to the function of society and are needed. Many children with disabilities suffer from seizures and other health issues, and almost all children with special needs have siblings that parents need to care for as well.
"Right now, there are a lot of hats that parents have to wear," said Jennifer Henkle, parent of a child with deaf-blindness and the New Jersey Center on Deaf-Blindness (NJCDB) Family Engagement Coordinator. "We are working full-time jobs, acting as teachers, nurses, therapists, and trying to build some normalcy in an unclear situation. It is challenging -- and near impossible -- to do all of those things well."
There is one thing that professionals in the field of education say most parents with children who have special needs have in common. Whether the child has Autism, Downs Syndrome, Attention Deficit Disorder or any one of the numerous, diverse disorders that are present today - their parents are resilient. Most parents of special children have existed on a roller coaster ride since the birth of their beautiful child, with ups and downs, twists and turns. And just like an amusement park ride, parents often find themselves upside down with a sinking feeling in the pit of their stomachs.
With the shift to online learning and virtual backpacks, many mainstream children are thriving. Most parents say the instruction is going well, students are doing their work and are logging online to virtual classes independently. However, many parents with children who have special needs or learning disabilities say they are finding the situation extremely challenging.
"As far as the homeschooling goes, I'm dealing with both sides of the spectrum," said parent Aneca McNelly. "My daughter Sara is doing beautifully with the remote learning on Google Meets with zero direction from my husband or myself."
McNelly's 16-year-old son, Alex, has autism and suffers from frequent seizures, often enduring the sudden onset of a seizure during the day or night.
"As far as Alex goes, there isn’t a Chromebook program in place for him," said McNelly. "His school has provided us with a lengthy packet of worksheets. In conjunction with this, we have Occupational Therapy (OT), speech therapy (ST), daily living skills and physical activities that need to be performed and logged. This has been a huge struggle as Alex is frustrated very easily. You take that and seizure activity, and it becomes a recipe for meltdowns and tantrums."
Many children with disabilities receive multiple therapies from numerous trained professionals at school, whether in-district or out-of-district. These professionals have studied and implemented various techniques for years.
Kathleen Benton is a Science Teacher at South Plainfield High School. Her son, Blake, is in second grade and was originally diagnosed as multiply disabled, but recently his diagnosis has been changed to learning impaired.
"The school has been very supportive, but when a child needs so many modifications, there tends to be so many people involved in the education plan/process that it is next to impossible to try to orchestrate from home," Benton said. "For example, Blake is in a class with different grade levels so none of the students have the same schedule or even the same resources, like Occupational Therapy (OT) or Physical Therapy (PT.) So he has missed many opportunities to see classmates and teachers because we don't know where he's supposed to be."
"My daughter, Brianna, goes to an out-of-district school that is sending out a huge packet every week with stories, teacher instructions, activities, physical therapy exercises, occupational therapy exercises, speech therapy guides, and pages of with special icons for her to learn words from the core curriculum," said Patricia Trenchak Feeney.
Feeney has three children. Her youngest child, Brianna, is 11 years old and has a rare disability called Pallister Killian Syndrome (PKS).
"Brianna does not speak to communicate and uses a wheelchair, so the therapy is not only complicated, but physically exhausting for me," Trenchak Feeney said. "At school, different people take over throughout the day to work with her. At home, it's all on the parent. Thankfully, my older daughter, Bridget, is a big help. But, I actually hurt my back from all the extra stress and physical demands. It's not like we don't work with her at home regularly, but this is different because it's constant, and trying to decipher lessons and therapies is extremely difficult."
During the school year and into the summer programs, therapists work hand-in-hand with parents to ensure the child can develop life skills that are essential to daily functions.
"We usually have a therapist that works with him four days a week to help with homework and social skills," McNelly said. "This has been put on hold as we are all practicing social distancing. What takes a village of professionals, special needs teachers and aides to do during the course of a school day with him, I am now going at alone. It’s a struggle but I’ve been picking my battles. I have recruited Sara help him as well. It’s a good change of pace for him and myself."
A common fear of parents who have children with special needs is of regression. When children, parents and the school staff work so hard to reach their milestones, it is devastating when children regress and forget what they have learned. When schedules change, a child moves into a new classroom or advances a grade, or when therapy and education stops or slows, regression is a real possibility.
"Even though Blake works hard all day long, I am so worried that he is losing all of the progress he made all year long," Benton said.
"This time has been extremely difficult and such an emotional roller coaster for all our families in the Special Needs Community," Henkle said. "My daughter is 7 years old, and she has a rare syndrome called CHARGE, which is truly a multi-sensory syndrome. With the lack of her regular routine, missing out on therapies, and heightened anxiety, we have seen some signs of regression. I'm nervous it will take some time to get back to where she was."
Parents agree that while most schools have gone to virtual learning for children in mainstream classes, having a child with special needs or learning disabilities to any degree, makes going virtual nearly impossible without constant attention. Their children are used to face-to-face interaction and hands-on therapies.
"There is no way that Blake would be able to even navigate Google Classroom or the sites where he is expected to be if my husband wasn't with him for the entire time," Benton said.
"I guess, in a way, I have an advantage over most parents because I work as an aide in a self-contained class," Michele Both said. "So I have had training and can use that to assist Kyle, but I also have an 8th and 6th grader to keep in check. The biggest challenge is not knowing the 'teacher talk,' how does his teacher explain things. My way may be different than what he is used to and can cause frustration on Kyles end."
Both's son, Kyle, has Downs Syndrome and is a junior at South Plainfield High School. Both said her son's teachers are trying to be inventive with activities.
"The teacher sent home packets and has added work on Google Classroom daily," Both said. "We did a virtual Shoprite trip and the kids had to pick an appetizer, meal and desserts they wanted to make. They then had to create a shopping list and look up prices. This was in place of their CBI trips, community based instruction."
Councilwoman Christine Faustini's daughter, Ava, has Dyslexia and is in fifth grade. Faustini says her daughter has made tremendous strides in reading, but new vocabulary, longer assignments and providing written responses still present challenges.
"Virtual school is something all students are adjusting to, and I am happy how well things are going," Faustini said. "However, the shortened periods do make it a challenge at times for a student who requires additional time to compute or process. Each week gets a little better and gives Ava more confidence navigating things."
Parents are also discovering helpful resources and ways to connect with their children and help them learn.
"As parents, we tend to isolate with our teachers, professionals, and the support system that we have filled with people who seemingly 'get it.'" Henkle said. "This situation has taken many of these components out of our lives for the time being. Still, there are many resources to help support us; webinars, State Agencies, and social media can offer great opportunities."
"It helps to do the Google Meet and ask the teacher questions," Both said. "He can also share his screen to direct us on where to find things. I have a Mac computer, so I am not familiar with the Chromebook so Kyle helps me and gets us into Google Classroom, but parents need to be involved this is our new reality until we go back to 'school.'"
"We have found child friendly tutorials online that can be replayed as needed are very beneficial in addition to live instruction," Faustini said.
Henkle works as a support for families with children who have various degrees of deaf-blindness. The New Jersey Consortium on Deaf-Blindness (NJCDB) is one of several statewide initiatives that support the education and lives of people who are deaf-blind. In collaboration with the National Center for Deaf-Blindness, this project was enacted to improve educational outcomes for children and youth who have been identified as deaf-blind. Henkle can identify with the parents she is helping because her daughter, Molly, has a rare syndrome called CHARGE.
Henkle says it's crucial as parents to give themselves room "to not be great at homeschooling."
"Maybe the math paper doesn't get finished, or you take a lengthy break from homeschooling," Henkle said. "If it helps make your child feel secure, then take time to watch a movie, take a walk, or give them a little more screen-time than you usually would. That may bring up a variety of different emotions for parents -- I understand entirely, I'm in the trenches with you. We are all doing our best to survive, try not to feel like this is a reflection of you."
Henkle adds that parents of special needs children have been through many triggering experiences as experts have told them their children may not be successful in certain areas. She says experiencing feelings of fear, being overwhelmed or feeling a lack of control over the situation, may surface. She says parents need to let themselves off the hook and realize it cannot all be done and it certainly does not have to be done perfectly.
"Try to remember children feed off our emotions as well as their own, and try to make time for yourself to recharge," Henkle said. "Guilt in special needs parents is genuine, and we need to understand we cannot do it all."
Parents say that although having a child or children at home, schooling at the kitchen table instead of in the school building, has been challenging to say the least, however, valuable lessons have been learned about their children and themselves.
"What I have learned is that parents (especially ones with special needs children) cannot duplicate an intense individualized education program at home," Benton said.
"I can't possibly follow everything the school instructs us to do," said Trenchak Feeney. "I'm finding inventive ways to adapt the lessons to what I understand Brianna's comprehension to be. We also take walks now that it's beautiful outside because everything gets overwhelming at times."
"Professionals are trained and I have a new-found respect for them," Benton said. "They have to be patient and caring. They also need to assess the needs of each student and design a plan that works perfectly for that student to be truly successful. I think that this is difficult and is often under-appreciated. Blake's teachers are extraordinary individuals and I knew that before, but now I am in awe of it."
"I get to see firsthand how academically Kyle has progressed," Both said. "He does not get homework on a regular basis, so I am not actively involved with that. I am in contact with the teacher on a weekly basis and get updates on what is going on in school. I think this time at home has made me realize that Kyle has come so far, but he is still willing to learn. Kyle loves school and it is nice to see that."
"Although Brianna has been diagnosed with all of these disabilities, she is so happy and full of love," said Trenchak Feeney. "She teaches me to slow down and appreciate the good in life. Working with her and going through the teacher's lesson plans has opened my eyes even more to my daughter's needs. In Brianna's case, and I believe for many children with special needs, I want her to be able to equipped to function to the best of her ability in the world."
Many parents say they are taking this time to truly be with their children without being swept into the blur of scheduled activities, racing from activity to activity. They are truly listening to their children and taking a pause to understand their needs as well as their own needs for support from educators, fellow special needs parents and the community.
"I hope parents really take this time to understand their child’s needs while they work with them," Both said. "If they have not been good communicators with their teachers that they become a better advocate."
"As parents, we know our children better than anyone, and with the support of the professionals at school, we can together help our kids reach their optimal potential and enjoy happy, fulfilled lives," said Trenchak Feeney. "I feel that being an advocate now more than ever is important to get through the next few weeks or months of homeschooling her. I am, as are all parents, my child's voice, and that voice needs to be heard."
"No one has ever seen anything like this pandemic and quarantine before, and it was impossible to prepare for. We are all in survival mode, fight or flight," Henkle said. "We, as special needs parents, are experts at adapting our children and ourselves to anything that comes our way. It may not seem like it at the moment, but we will come out of this stronger than we ever thought."