Victor Rodriguez loves listening to music. He’s a big wrestling fan. He has been honored as a top entrepreneur by Galveston Regional Chamber of Commerce’s Lemonade Day for his top-selling lemonade stands over the years.
On Fridays each week, he works at the popular Galveston eatery The Spot, helping to set up the family section of the restaurant for opening. In July, Victor will turn 21.
Victor has Down syndrome, is functionally nonverbal though he works mightily to communicate, and has impaired hearing, serious sleep apnea and other conditions that make his life challenging.
Steering the ship of his busy life is his mother, Cynthia Rodriguez. They live, along with Victor’s father and younger sister, on a shady street outside San Leon in the house the family moved into the year Victor was born.
It hasn’t been easy, but caring for Victor, both as his mom and his legal guardian, has been an experience that opened Cynthia Rodriguez’s eyes, inspired her to learn more about laws that protect and serve people like Victor and turned her into a court visitor and advocate for families in situations similar to hers, she said.
“When I got guardianship of Victor, when he turned 18, Martha Branson made a home visit for the court and said she was the only one doing this for the Galveston County Probate Court,” Cynthia said.
Legal guardianship, in this case, was the process of the probate court finding that Victor was unable to manage his affairs effectively because of his disability and appointing his mother to make decisions for him.
Home visits are a function of the court checking on living conditions and adherence to guidelines. In many cases, home visitors can help guardians identify services and benefits available to them and their wards, Rodriguez said.
“I told Judge Kimberly Sullivan that I would love to go into homes and do court visits,” Cynthia said.
She learned the ropes of the system and became a court visitor, acquiring knowledge of the complicated network of benefits to the disabled and their guardians along the way. Her passion became telling others what help was available to them, she said.
“I always tell moms, especially those facing more difficult circumstances than we had to face, to take care of themselves,” she said.
‘IT TOOK ME A WHILE’
When Victor was born, Cynthia put her trust in doctors and, later, in the schools, she said. She knew little about what she could do as a parent to ensure her son received all the benefits due to him as a person with a disability.
“When he was born, it was three days before I held him,” she said. The mother of two, she knew when she first saw him that her third child, born prematurely, was different. And though it’s hard to admit, that scared her, she said.
“It took me a while to connect,” she said.
The couple had another child after Victor, a girl. Cynthia said she sometimes felt the youngest missed out on some of the things the older kids enjoyed before Victor, but she also sees caring qualities in her daughter that she attributes to her closeness with her brother.
As Victor grew older, Cynthia became more tuned into his particular special needs and found help through Victor’s health insurer, Texas Children’s Health Plan, and the service coordinator who helped her see that Victor received the same opportunities afforded to others, she said.
When Victor turned 18, an adult by law, his case worker at the health plan helped Cynthia navigate Social Security, disability compensation and the benefits available to a special needs guardian as well as his continuing health care needs.
In her role as court visitor, Cynthia began doing the same for others, she said.
THE LOVE BETWEEN US
“After doing this for a while, I asked to speak to case workers, to tell them that when they came to someone’s house, they needed to ask them specifically what benefits they already had,” Cynthia said. “If you don’t ask them, it’s not possible to find out what they are missing, what they don’t know.”
Cynthia said her work with other guardians and caregivers is gratifying, especially when someone succeeds at securing an available benefit.
“One woman I visited recently called me and she was so excited,” Cynthia said. “She told me, ‘I got with my insurance and got caregiver hours.’”
This benefit provided much needed respite for the caregiver, something she couldn’t afford out of pocket and didn’t know she could draw as an insurance benefit.
Some state benefits require being on a waiting list that might extend as long as a decade before fulfillment, but getting on the list at the earliest possible date is something she advises guardians to do, she said.
Standing at the kitchen counter of her San Leon home, Cynthia’s primary mission is clear: caring for her own family. But through advocating for Victor, she has extended the reach of that mission to others.
Upstairs, from Victor’s room, the strains of a rich tenor voice singing Mexican pop opera is turned up to full volume, filling the air.
On the kitchen door, hanging amid a collection of small plaques and family mementos, is a blessing:
“Bless the food before us
The family beside us
And the love between us.”