Melissa Alcala and her 3 year old son Gavin play in the ball pit behind their home in East Los Angeles. (Martin do Nascimento / Resolve Magazine)
LOS ANGELES – Over the summer, Sherri Brady sent messages to fellow parents of children with disabilities asking for help to inform them of a virtual picnic she was organizing.
The responses she got back made it clear that the families needed more than one online meeting.
Living in a pandemic has become overwhelmingly stressful, they told Brady, the agent for the Rett Syndrome Foundation in Southern California. Parents found it hard to keep it together – they monitored their children’s online school and therapies, handled breakdowns, struggled with financial problems due to lost employment, worried their medically fragile children would get sick, and grieved for the Loss of social activities and the social problems outlet they provided.
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“When I got to the third (parent) we were all in tears,” said Brady, whose daughter Lauren, 23, has Rett syndrome, which affects brain development. “The locks have just opened. My heart broke for her. I felt terrible because there was really nothing I could do. “
The pandemic has been particularly difficult for families caring for children with disabilities. Since March, many have faced the loss of personal support from teachers, carers, therapists, family members, and home health workers. Some have gone months without service.
Now, after 10 months at home, some of these families have settled into the new reality and are receiving better support. Some have found creative ways to adapt, said parents and advocates. But others, like the parents Brady spoke to in July, are still struggling to get their kids the help they need.
“We’ve been busier than ever,” said Crystal Smith, program manager at the McClaney Family Resource Center in south Los Angeles, which provides guidance and support to families with children with disabilities. “Parents and carers are overwhelmed. There has to be some kind of postponement. “
How well families are doing depends a lot on their relational and financial resources, Smith said. Some have been able to rely on other family members or community members to look after their children or provide assistance with basic needs. If they have the Internet and a computer at home, they can take advantage of therapy and other telemedicine-provided specialist appointments.
Other families are forced to focus on basic needs. Smith and her colleagues spend a lot of time providing these families with food and study kits. They run online workshops to help parents access services and provide support to carers who speak a language other than English.
To help families in trouble, lawmakers must provide greater financial assistance such as stimulus payments, food subsidies and rent relief, Smith said.
For school-age children, online classes have given a semblance of routine, and school districts have improved their ability to adapt curricula to accommodate virtual learning, proponents agreed. But many children still do not get the same class time or study assistance that they received when the class was face-to-face. Even for children attending schools who have resumed their personal classes, the experience has been marred by COVID-19 outbreaks, hybrid schedules, and the loss of socialization and physical interactions due to pandemic safety requirements, Brady said.
“We’re still not back to normal,” she said. “It is as if you need your child to go back to school for yourself and your job, but also for your child – so that they can get back to their regular schedule and duties. But you have to do that with “Will you be sure?”
Improvements for some
Melissa Alcala of Lincoln Heights, Los Angeles was struggling to get services for her 3-year-old son Gavin when widespread bans went into effect in March. Gavin, who has a rare genetic disorder that has resulted in partial blindness, epilepsy, and developmental delays, was due to begin preschool on Albion Street Elementary this spring. But Alcala couldn’t enroll him in preschool until August, which meant he lost months of school and supportive therapies.
Gavin now attends two-hour Zoom courses every weekday, during which time he also receives physical, professional, speech and vision therapy. After Gavin’s development declined over the spring and summer, Gavin’s attention span and communication skills improved, Alcala said. He also has a personal assistant to help him out during class, although the assistance isn’t very useful at the moment as it’s virtual rather than practical, she added.
“I’m relieved because there was so much uncertainty. There is still a bit of that now, but I have the feeling that we have finally made progress, ”said Alcala. “Now I have to hold my breath for the next step.”
The next step, she said, is safe in-person teaching.
Less calls for help
For Yvette Baptiste, executive director of the Family Resource Center in east Los Angeles, a sign that the initial chaos of the pandemic has subsided is that she is receiving fewer calls. Earlier this year, her center received calls almost daily from parents whose children had lost their services or who were having trouble getting a computer or navigating through Zoom.
But there’s another reason Baptiste and her colleagues may get fewer calls. Young children don’t see the doctor as often and there are fewer developmental delays and disabilities, Baptiste said.
She and other advocates work with California nonprofits that coordinate services for children with disabilities called regional centers, and with the state Department of Social Services to get contributions from families and better respond to their needs. Some rule changes in the department have made it easier for regional centers to provide therapies and other support to families with young children that their schools cannot provide, as well as to providers helping parents meet basic needs such as food and drink learning to support supplies, she said.
For Brady and her daughter Lauren, who live in Whittier, the pandemic has made life monotonous. She no longer goes to school because Lauren is older, but during the non-pandemic period she participated in social and recreational activities, including horse riding. Now her life is mostly limited to walking around the neighborhood and going to the drive through to eat, Brady said. Lauren’s health status means she is at higher risk of serious illnesses due to COVID-19, her mother said.
For younger children with disabilities like Rett Syndrome, Brady believes that the persistent loss of regular personal therapy, classroom activities, and social opportunities can lead to developmental decline. Once in-person tuition resumes as normal, schools need to be prepared to provide extra support to children with special needs and not expect them to just pick up where they left off.
“It will take these kids a while to get back to where they were, much less to make progress and move forward,” she said. “You shouldn’t be punished for something that you have absolutely no control over.”
This story was produced in collaboration with the California Health Report.