The founder of Growing Roots helps families of children with disabilities build a community of support, knowledge and empowerment.
By Rachel Merriman
When you were 12 years old, what did you want to be when you grew up? An astronaut? A rock star? An actor? Not many 12-year-olds know what a speech language pathologist is or what they do, but Maria Hernandez knew she wanted to be one.
“I remember in seventh grade, they made us do these career-day-type things, and we had to decide what we wanted to be when we grew up. Nobody else really knew, but I said I wanted to be a speech language pathologist,” Hernandez remembers. “My brother had to see a speech language pathologist as a kiddo. I didn’t really realize what it was; I just knew I would get dropped off there also, and that it was a cool place with books and games. [For the career-day assignment], I interviewed a speech language pathologist at a hospital and I said, ‘This is what I want to go to college for.’ ”
Years later, Hernandez came to Austin to attend the Communication Sciences and Disorders master’s program at the University of Texas. After she graduated, she decided to stay in Austin and work with the area’s growing immigrant population, helping autistic children learn communication skills. While working with children in their homes, Hernandez observed that many parents struggled to utilize the special-education programs at their children’s schools.
“The immigrant population was so interesting to me because their [children’s diagnoses] was just 5 percent of what was going on with them. I would hear other professionals make comments like, ‘This parent isn’t engaging,’ or ‘This parent isn’t participating in meetings,’ and sometimes even, ‘I just don’t know if they care about what’s going on.’ And I knew it wasn’t true,” Hernandez says. “So many of the families I was working with were living in one-bedroom homes with three or four kids, one of them with special needs. Just being able to meet their basic needs was a harsh reality. On top of that, they were expecting parents to show up at school meetings with their paperwork and excellent questions.”
Hernandez also noticed that Spanish-speaking families in particular faced challenges getting accurate information about their children’s medical conditions from their doctors, due to cultural differences and language barriers.
“Another big issue is what their cultural experience has been and how different it can be here. When the neurologist says, ‘Your child has epilepsy. Here’s what epilepsy looks like and here’s some information,’ and asks if they have any questions, our families say no, even though they have no idea what the neurologist just said. To them, asking questions is questioning your authority,” Hernandez says. “And so what happens is this parent becomes passive. When the school asks them questions like, ‘What do you think would be a good goal?’ or ‘Do you feel like this is something we should work on with your child?’ they would say, ‘Whatever you think.’ Even if they have great ideas, because parents are the experts on their children, they wouldn’t necessarily share their ideas out of respect.”
Hernandez realized she wanted to do something to help parents of children with special needs while working at a therapy clinic.
“A lot of the kiddos going to the clinic were getting [a combination of]speech, physical and occupational therapy,” she says, “so sometimes the parents would sit in the waiting room for two to three hours waiting in between sessions. I remember walking out to grab one of my kiddos to go into session with him, and there were 30 parents just sitting in the waiting room, looking at the same old magazines and watching the same old cartoon for the 50th time. I thought, ‘Shouldn’t we be doing something here? Why are we not using this opportunity to engage parents?’ It’s wonderful to do direct service with the kiddos, and it’s needed, but the person that’s with them the other 20 hours of the day is the parent.
“I heard the little voice say, ‘Do that.’ And I said, ‘Oh, no, too hard. Way too hard. I’m sure someone else is doing that.’ I started looking in town first. I thought surely someone had a program I can work with that gave parents a community. And I couldn’t find it. So then came the very hard decision to say, ‘OK, I’ll go for it.’ ”
At first, Hernandez’s organization, Growing Roots, grew slowly while she continued to work part time at the clinic. With a notebook already full of ideas, she began interviewing parents and developing classes with curriculum to meet their needs.
“I spent the first year interviewing families because if we were really going to do this well, we needed to stop assuming that we knew what families needed in terms of information. We needed to really ask them, ‘What would have helped you when you heard the word “autism”? What would have helped you when someone told you your child had cerebral palsy?’ Parents had amazing feedback. It was direct. It was specific. They said, ‘These are the five things that would have changed everything for me,’ ” Hernandez says.
Armed with feedback from parents, Hernandez decided to create hands-on informational classes in which parents could learn and connect with each other.
“The idea behind Growing Roots was that parents, once their kiddo gets a diagnosis, they are pulled in all these different directions of sitting with doctors and going to therapies and trying to understand the special-education piece. They don’t have a roots system; they don’t have this foundation of really feeling solid in what they understand, and knowing what questions to ask and what resources there are. And they need emotional support. If something feels hard and you have this solid foundation of ‘I know I’m not alone. I know there are other families like mine,’ you’ll feel a little more grounded in your journey,” Hernandez explains.
For parents who are already struggling to care for their children and keep up with therapy and doctors’ appointments, attending school meetings and filling out multiple pages of paperwork can feel overwhelming and confusing. To address that need, Hernandez developed a nine-session course focused on navigating the school special-education program.
“When your child enters special education for whatever reason, there is no orientation for the parent. They say, ‘Come to the ARD [meeting]and we’re going to talk about the IEP and review your child’s FBA to create a BIP.’ And you’re like, ‘What? You just said five acronyms. I’m already feeling vulnerable, and now I’m feeling powerless,’ ” Hernandez says. “The school document that is reviewed at the ARD is 30 pages long, and it’s full of acronyms. It’s kind of like reading a manual on how to build something, but it’s about your kid. That’s emotional.”
Hernandez’s course covers information on special-education laws and provides parents with strategies for participating in meetings and communicating effectively with teachers. Often, parents partner up and role play to practice articulating their concerns and asking questions in a situation in which they may feel vulnerable or confused. To help parents be fully prepared for school meetings, a large part of class time is dedicated to organizing a binder that contains copies of important paperwork from doctors, therapists and the school.
“I’m a lot more prepared to handle any meeting with the school,” says Veronica Karr, who has a 2-year-old son and a 5-year-old daughter, both of whom fall on the autism spectrum. “Every time I go to a meeting, I bring my binder with me. It’s kind of like my business card.”
Hernandez also used her experience working with autistic children to create a second Growing Roots autism class that focuses on helping families understand what autism is, the therapies and local resources available and how to connect with other parents. Many parents with children who have autism end up taking both the special education and the autism classes.
Theresa Hornung, who has twin boys on the autism spectrum, says the classes not only empowered her by giving her tools and information, but they also gave her the opportunity to share her experience with other parents.
“Hearing other people talk about their struggles with feeding and doctors, not only did I get a lot out of it, but I thought, ‘I’m going to be able to contribute here and help,’ ” Hornung says.
It wasn’t long before Growing Roots added a monthly support group for parents who still needed a safe space to talk about what they were going through after completing the nine-week class.
“The very first class, I had four parents show up and I was thrilled,” Hernandez says. “I had planned maybe 20 minutes for us to go around the room and introduce ourselves to one another. We never got past introductions. They were so grateful to have a space where everyone sitting at the table was walking a similar journey they were. Every parent bawled. And I just threw the agenda away and said, ‘OK, we need to make sure Growing Roots accommodates for the emotional part.’ ”
“When I was introduced to other moms who had been through the same thing, it was such a relief,” says Veronica Martinez, a graduate of both the autism and special-education classes who also attends the monthly support group. “It was so gratifying to be around them because they just kind of got it. They totally understood what I was going through. They were such resilient and wonderful women. To be part of that group has been really amazing.”
Once she realized that parents needed healthy ways to cope with their emotions just as much as they needed information, Hernandez added a self-care component to both classes.
“Sometimes when you learn and connect to resources, it can feel like you’ve just added more stuff to your to-do list. At the end of each class, we do a really basic exercise. It’s usually around mindful breathing or something very calming that parents can do anywhere. We always say it has to pass the ‘H-E-B test,’ which means you can do it holding an H-E-B cart,” she says.
As time has passed, Growing Roots has expanded to provide services to all families of children with special needs, regardless of their socioeconomic background.
“When I first started Growing Roots, the name was in Spanish. I thought we were just going to serve Spanish speakers because that is the most vulnerable population and it’s growing in Austin,” Hernandez says. “Nobody had created programming specifically for Spanish speakers if they had a child with special needs. And then it shifted. We started getting a lot of English-speaking families that were middle-income. There was a moment where I asked myself, ‘Is this who Growing Roots serves?’ After talking with middle-income English-speaking families, I realized they may not have the same hardships around basic needs, but they have the same hardships around knowing how to navigate systems and how to process what’s going on emotionally. We can’t say [to them], ‘Your suffering is not enough.’ A parent of a child with special needs is in need, regardless of their background.”
Growing Roots also provides supportive case management to parents who may have already been to classes or support groups but need extra help. Parents can come to the Growing Roots office for a one-on-one meeting with a social worker, who assists them with finding therapy services, insurance or reliable transportation. In the future, Hernandez plans to offer additional classes and workshops targeted toward spouses and siblings.
“[Moms say to me], ‘We don’t have a way to talk to our other kids about this, and they need support,’ and, ‘Can you start engaging our husbands or partners?’ Especially within the immigrant population, the dads don’t know how to handle this information of their child not being what they expected. Many of our moms are blamed for what is happening with their child, so even though they’re in a relationship or married, they are very much single in the sense that they are the only one that’s ever gone to the doctor with their child,” Hernandez explains.
Though Growing Roots is a fledgling nonprofit at just 4 years old, Hernandez and her team have already provided resources and education to more than 200 families from 49 different zip codes in Austin and surrounding areas. The walls of Hernandez’s well-organized office are adorned with thank-you cards and photos of smiling families. Little paper cutouts of people arranged on the wall by her computer are scribbled with words and phrases:
“Silly and giggly”
“Loves movies and books”
“Very helpful and sympathetic”
“Loves school and art”
“Artístico y fascina el cine”
The paper people, she explains, were made during an activity parents participate in at the beginning of class. They are meant to act as a visual representation of their children and a reminder of who they are as people when the world they live in often reduces them to their diagnosis. Hanging on the wall here, they’re now a representation of the parents Hernandez has helped so much.
“The most rewarding thing is watching the shift that happens from week one to week nine, being able to witness this parent who comes in angry, sad and frustrated become who they are: this parent who is empowered with knowledge and knows how to use it,” Hernandez says. “I really see it as a privilege to witness that metamorphosis.”
Growing Roots is a nonprofit organization dedicated to empowering families of children with special needs through weekly informational classes, monthly support groups, family fun days and supportive case management. All Growing Roots programs are bilingual and 100 percent free.
Growing Roots’ autism program helps parents understand their children’s diagnosis and connects them with community resources. In the seven-session class, parents will make a parent toolkit designed to help them in meetings with doctors, therapists and education professionals, and share their experiences with other parents.
Growing Roots’ Special Education in the Schools program prepares parents of school-age children with special needs for understanding the special-education system. In the nine-session class, parents learn about special-education law, prepare for ARD meetings and create a parent toolkit.
Classes begin in the fall and meet at the Pan American Recreation Center located 2100 E. Third St. Classes are free and childcare is provided. Find more information at growingrootsaustin.com or by calling 512.850.8281.
Monthly Support Groups
Support groups for Growing Roots families are held each month in both Spanish and English, and are facilitated by licensed social workers.
Upcoming support groups:
- July 18, 10:30 a.m.: English Support Group
- July 21, 10:30 a.m.: Spanish Support Group
- Aug. 15, 10:30 a.m.: English Support Group
- Aug. 18, 10:30 a.m.: Spanish Support Group
Find more information at growingrootsaustin.com/calendar.
Family Fun Days
Family fun days provide a great opportunity for families and children with special needs to connect and play, worry- and judgment-free. Events are held six times a year in February, April, June, August, October and December, and are open to children of all ages and abilities.
The next Growing Roots family fun day is Aug. 23 from 1 to 4 p.m. at Danny McBeth Recreation Center, 2401 Columbus Drive.
Supportive Case Management
Need help figuring it all out? Growing Roots social workers can connect you with resources and work with you to create a plan to support your child and take care of yourself. Call 512.850.8281 to request additional information.
A Night at the Museum
Bring the whole family to Growing Roots’ third annual fundraising celebration at the Thinkery on Aug. 16. The Thinkery is located at 1830 Simond Ave. RSVP at growingrootsaustin.com/rsvp.