WEST ORANGE, N.J. – Remote learning is no easy task for typical children, but for families with special needs students, having kids home from school not only makes learning tough, it takes a toll on their ability to get necessary therapies.
The Senek family from New Jersey has lived this reality for the past five months. Their 12-year-old daughter, Josephine, struggles with mental and physical disabilities, and during the pandemic, these challenges have become more present than ever.
“She’s got multiple disabilities, including a rare chromosome disorder, she’s missing connective tissue in her brain, and in addition, she’s got autism,” said the young girl’s mother, Krysta Senek.
Like families across the country, Senek and her family were forced into remote learning because of COVID-19, but she found a totally different education experience between her typical son and her special needs daughter’s classwork and resources.
“The at home learning was not good,” laughed Senek. “We did try it, we attempted,” she said of keeping up with her special needs daughter’s assignments and care.
“It’s different because we’re mom and dad,” she said. “We’re not teacher were not therapist, we’re not aide, we’re mom and dad. Yet, Senek and her husband were thrust into all those roles without help or guidance in the beginning.
“Emotionally, we were wrecked,” she said. “She would meltdown and hit us, she would scratch us and bite us, pull our hair, just throw a meltdown, strong hard screaming meltdowns.”
Josephine’s aides were trained for and equipped to handle those meltdowns.
In school, Josephine had those professionally trained aides with her throughout the day, but when the pandemic hit, that help stopped. She eventually got some help from a therapist who now comes to assist at certain times during the week. But Senek said the change in routine and change in those around her really upset her daughter’s learning.
“It just blew her up, and she couldn’t focus she couldn’t learn, she couldn’t get therapy,” said Senek.
For special needs students, the therapy they get every day in school is critical to developing life skills and social skills.
“I just don’t want her to go backwards,” Senek said. “When a child with disabilities goes backwards, it takes us twice as long to get us back where we need to be.”
Those therapies provide health care too, and now that Josephine isn’t in school, Senek said she’s had a hard time keeping her daughter’s back and leg braces on during the day.
“They were getting her to wear it at school, and then because she’s so used to wearing it at school, it wasn’t a problem to put it on her at night, but that stopped,” said Senek. “She hasn’t worn her scoliosis brace since March, and her feet are starting to collapse, so those things are going to affect her.”
Senek said the last few months have impacted her own health too.
“Our school district and the school, they all thought about what’s best for the kids, what’s best for the staff, nobody thought about the parents,” she said.
It’s been the toughest time in her life as a mother.
“We suffer from things like PTSD, and I even suffer from that, and it’s because of my daughter. I don’t blame my daughter, but it’s as a result of caring for a child with special needs that I have PTSD,” said Senek.
This emotional weight is a feeling Senek knows other families in her shoes feel too, especially when thinking about the future.
“It makes me emotional, and it makes me scared because I have no idea what her future is going to hold for her. It’s going to set all of the kids back,” said Senek.
It’s a fate this mother fears will alter her daughter’s life forever.
“I’m nervous that maybe she would’ve been in a group home, independent, and now, she won’t qualify for independent group home. She might need a nursing home,” Senek said.
Thankfully for the Seneks, their teenage son Sheldon is stepping in for the summer to be Josephine’s aide. But this help will end when Sheldon goes back to school himself.
“It’s been really nice to physically see her more, but kind of see how she’s like as a person,” said the high school student. “Rather than, ‘Oh yeah that’s my sister, it’s like, that’s my sister.’”
Senek is hopeful this fall her daughter can return to school safely or find another aide once her son goes back to school. She warned for all families with special needs students, the time to ask for help is now.
“Moving forward, we need the proper assistance,” Senek said. “Regardless of where we are with this pandemic, the special needs population cannot be forgotten, they’ve already been forgotten, and they cannot be.”