Her 2-year-old son Hien had just been diagnosed with autism, global developmental delay and a seizure disorder. She had questions but no answers, stacks of paperwork but nobody to help her make sense of it, and plenty of guilt surrounding the situation, blaming herself for things she may have done wrong during the pregnancy. She also didn’t speak much English, having just arrived to the U.S. two years earlier from Vietnam in 2016, which made the whole thing even more difficult.
“My days consisted of tears,” Vien said through a translator. “I was so overwhelmed that I couldn’t understand what to do or where to start. I didn’t believe that anyone could help me at that point.”
Then she got a referral to Parents Helping Parents, a San Jose-based nonprofit that aids families raising loved ones with disabilities through advocacy, education and various means of support.
And her story changed.
“I came to the support meeting and I really felt that PHP could help me,” said the San Jose resident, whose son Hien is now 9. “I was in awe.”
Just like that, she didn’t feel so hopeless or alone anymore, as she worked with the PHP staff members — most of whom are parents of children with disabilities themselves.
“I was able to connect with parents who had been there and with families who faced many challenges but were moving forward,” Vien says.
Vien was able to gain crucial assistance from PHP in understanding the many agencies that could provide support for her son. That included navigating the IEP (Individualized Education Program) process and IHSS (In-Home Supportive Services) program.
“Since then, I changed my perspective,” Vien says. “I realized that there is a community who will walk forward with me and my child.”
The Vong-Vien Family is one of tens of thousands of families that have benefited greatly from Parents Helping Parents, an organization with roots that stretch back to 1976 — when two mothers with children with Down syndrome organized a support group — and then incorporated as a nonprofit in 1980.
PHP is an ally for these parents at all stages of their children’s development, walking them through life transitions, from birth to early intervention and dealing with school to adulthood and the challenges of independent living.
The organization offers webinars, one-on-one consultations, support groups and so many other applicable resources, all of which are designed to encourage and assist families across California, the majority of whom live in Santa Clara County.
“What PHP gives families is more than information — it’s hope, belonging and the strength to keep going on the hardest days,” says Mark Fishler, PHP’s chief development officer.
Through the Mercury News’ annual Wish Book campaign, which seeks to raise money for the most vulnerable in our communities, PHP is looking to receive $25,000 to expand its operations and work with even more families in need of services.
“Families raising children with disabilities face overwhelming barriers — especially in communities like East San Jose and Gilroy, where language and access gaps are the deepest,” Fishler says. “The Wish Book grant means we can meet parents where they are, in their language, and help them know they are not alone.”
Specifically, the grant would allow PHP to support more than 300 services for families in East San Jose and South County. These services include support groups, one-on-one consultations, family events and advocacy training, all of which, Fishler says, are “designed to help parents navigate disability systems and access vital resources in their own language and community.”
Alba Vivas is yet another parent who has found the services provided by PHP to be so very invaluable.
When her daughter Ariana was first diagnosed with autism in 2021, Alba was initially filled with trepidation over what might happen in the days, months and years to come.
“I was worried for the future of my daughter,” says the San Jose resident, who came to the U.S. from Colombia in 2018. “I didn’t know how to start the journey.”
She quickly decided to be the strongest advocate that she could be for her daughter — and that decision eventually led her to PHP, where she found the support she needed to tackle the challenges ahead.
“I wasn’t alone,” Vivas, a Spanish speaker, says with the assistance of a translator. “I understood that there are a lot of families with similar — or worse — diagnoses as my child.”
Thanks to PHP, Vivas’ situation started to improve as she was able to find the resources she needed to help her daughter.
Now, Vivas is working to help other parents, too, as she participates in PHP’s Autism Support Group and the Connected Families Club, where she is able to share challenges and victories with other members of this community.
“It’s great to be there because my experience can help others and their experiences can help me,” Vivas says.
Overall, what PHP is helping to create is an empowered group of parent advocates — ones that are there to help both themselves and others.
“When parents receive support, training and encouragement, they become powerful advocates — not only for their own children but for countless others,” Fishler says. “That ripple effect is how we change systems and build a more inclusive community.
“Every time a parent learns how to navigate the system or advocate at school, the whole community benefits. PHP helps families unlock that kind of change.”
For more information on Parents Helping Parents, visit php.com.
ABOUT WISH BOOK
Wish Book is a 501(c)(3) nonprofit organization operated by The Mercury News. Since 1983, Wish Book has been producing series of stories during the holiday season that highlight the wishes of those in need and invite readers to help fulfill them.
WISH
Donations to Parents Helping Parents will support over 300 direct services to families with children with disabilities in East San Jose and South County. Goal: $25,000.
HOW TO GIVE
Donate at wishbook.mercurynews.com/donate or mail in this form.
ONLINE EXTRA
Read other Wish Book stories, view photos and video at wishbook.mercurynews.com.