By Denise Cathey, Staff Photographer
Translation by Nubia Reyna
Two weeks into shelter-in-place, Annette Sankowski’s 5-year-old son Tristan eloped from the family’s house on a busy main street in San Benito.
When Sankowski,42, realized her son was gone, she ran around the house screaming for him, before running outside.
Sankowski had an added complication. Tristan has autism spectrum disorder. He’s nonverbal. He won’t wear a mask or allow anything on his head.
Down the street she could see police lights over the railroad tracks.” I couldn’t see over to see what was going on and I couldn’t leave my little ones here by themselves,” Sankowski said.
She had to wait at home as her husband John returned to retrieve Tristan.
They’ve tried explaining the pandemic to Tristan, but he may not understand.
The Sankowski’s are one of many families with children who have special needs navigating the difficulties of protecting their families while dealing with the disruption of their lives due to the COVID-19 pandemic.
Texas Education Agency reports that in the 2019-2020 school year more than 30,000 students in the Rio Grande Valley were designated as receiving special education services.
The pandemic difficulties are common for everyone here, a loss of routine.
For 38-year-old mother of two, Susana Perez, maintaining normalcy is a struggle as she juggles working from home while helping her children adjust. Her sons, Mason, 7, and Robert, 3, both have autism spectrum disorder.
Despite the lifting of the shelter-in-place order, Perez, like many families, has few options but to remain at home.
“ I’m scared because of Mason more than anything. He only eats about five things so his nutrition comes from baby formula… So, his immune system is not as strong,” Perez said.
Robert seems happy to spend time at home, but Mason prefers structure and routine. He has struggled to adjust to the absence of his usual schedule.
“ [Mason] woke me up at 5 in the morning.He kept saying ‘IDEA bus, IDEA bus’ because IDEA bus comes and picks them up at 7 in the morning,” Perez said.
She’s tried to explain to him that he was not going back to IDEA Riverview College Prep.
“ I had to contact his teachers and even the bus driver to please send me a video of them telling Mason that they love him, that he is missed, that they aren’t upset with him. He doesn’t understand, so to him it’s like ‘What happened?’ they don’t come and pick me up anymore,” Perez said.
On bad days, Perez plays those videos for him to give him some comfort.
Her primary fear is that, even with the in-home ABA therapy for the boys, the lack of structure will cause Mason to regress from his school achievements.
““ He’s been making a lot of progress, but now it’s been more discipline and harder because we reinforce the wrong things, Perez said. “
Perez is working from home and during tele-meetings he starts crying.
“ So, I give him the Ipad and that’s the worst thing I could do to him because I’m reinforcing that behavior. At this point we’re just maintaining,” Perez said.
Stephanie Wilson, program director for BiG Heroes, a nonprofit that focuses on working with young adults with disabilities, said that this is a challenge for many.
“ When our kids experience this change in routine that they don’t understand, sometimes it results in behaviors. It can be self-harming behaviors or it could be destroying things in the house because they don’t have the verbal skills to ask questions to get the answers that they need or really even to understand it,” Wilson said.
For these children, everything has changed.
Adjusting is harder for some than others, Miriam Delgado’s, 43, 15-year-old daughter Alexis who has cerebral palsy, took things particularly hard.
Alexis was used to going to school, visiting with friends and taking trips to the store with her mother. She doesn’t understand the change.
“ She doesn’t walk. She doesn’t talk. She is in a wheelchair,” Delgado said.
For two long weeks in April, Delgado struggled with Alexis refusing to eat.
“ She was in a depression and friends had to counsel her by phone three or four times,” Delgado said.
Alexis recovered, but Delgado has noticed an increase in her daughter’s aggression.
“ It’s more pressure because she is used to being out with me too. She wants to go to stores like HEB, shopping and movies. It’s harder because she gets more aggressive. She starts banging or scratching me,” Delgado said.
The pandemic isolation is a huge hurdle for families.
For Melinda Garcia,56, and her son Alex,26, who has Down syndrome, staying home for the initial 14 days seemed like an easy short-term sacrifice.
Now more than two months have passed while they stay in their Southmost home—an unthinkable life for a family used to frequent visits with their close-knit community of relatives,
“ That’s very hard, especially for our culture,” Garcia said.
What hurts most is that Garcia’s new granddaughter, born in February, hardly knows her or Alex. They’ve had a few safe visits, but Alex’s health is the priority.
“ We are just going to wait it out,” Garcia said. “What else can we do?”
Despite fear and stress, families are resilient in finding the good.
In Brownsville, Aida Garcia,41, began teaching her daughters Ana Priscilla,8, and Romina,7,— who both have autism spectrum disorder— how to bake .
One day Garcia found her daughter Romina in the kitchen.
“ She would just look at me and say “te..te..te” and I would say “what” and then I started recording,” Garcia said in Spanish. Romina—who is nonverbal— slowly said the words “te amo” (I love you) to her mother.
“ I have it recorded on my phone because she rarely says anything and it is the first time she tells me ‘te amo (I love you)’,” Garcia said.
As the pandemic accelerates, parents feel the strain of trying to preserve a sense of normalcy.
“ I just want this to be over so we can go back to normal. I’m fine, but it’s the kids—how do you explain this? How do you tell your kids what’s going on when they don’t understand,” Perez said.
“ It’s been difficult and I’m tired, I’m very tired.”
Nevertheless, she tries to do the best for her family in spite of her own fatigue.
“ I just try to be the mom that they expect,” Perez said.
