AUCD Network Narratives

Adapting to a New World of Service and the Language that Comes With It

December 15, 2021 AUCD Season 1 Episode 5
AUCD Network Narratives
Adapting to a New World of Service and the Language that Comes With It
Show Notes Transcript Chapter Markers

When it comes to creating change within our network and communities, it is important to make sure that our resources are culturally and linguistically appropriate. Maribel Hernandez does just that in her important role at the Mind Institute. She was born in Mexico and moved to the United States 26 years ago. Today, she’s a proud mother of 2 sons ages 19 and 21, who are both autistic young adults.

In this thoughtful conversation, Jeiri and Maribel discuss the hardest thing Maribel had to learn when she first adapted to this world of service and the new language that came with it. Maribel shares the value and comfort she found in her support group, especially as a Hispanic woman. Together, they discuss a dream situation in which families and individuals will have access to information in a careful step-by-step process after receiving a diagnosis, so they can avoid the anxiety and confusion that Googling can bring.

Maribel also shares her experience as a mom and how she empowers her sons to be fully themselves and while finding happiness. She shares ways in which she encourages, celebrates, and supports her sons so they will feel happy and confident. Finally, Maribel shares what fun looks like from her community to her home, especially during the difficult times of the pandemic.

This is a heartfelt and thoughtful episode where Maribel shares her knowledge and experience. Tune in and gain an inside look at how she supports her family, community, as well as the legacy she wants to leave for generations to come.


View all episodes and transcripts at http://www.aucd.org/podcast


This episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, the US Department of Health and Human Services, or the US Government.

Produced by Adode Media; a full-service podcast production agency.

Welcome to AUCD network narratives, where we share real stories from our members. I'm your host, Jeiri Flores advocacy specialist at the strong center for developmental disabilities and the co-chair for the council on leadership and advocacy. Join us as we hear from inspiringly within our network working to make a change.  

Jeiri Flores: Today, we are here with Maribel Hernandez who works at the mind Institute in a very important role, providing resources to families and ensuring that resources are culturally and linguistically appropriate. She is also a parent of two autistic young adults.

Maribel Hernandez: Good afternoon. And thanks for the invitation. As you hear My name is Maribel Hernandez and I am born in Mexico and I moved to the United States 26 years ago. I have two kids. My son Max, is almost 21. My son, Chris is 19 years old. They're both on the spectrum. And thanks to that I start to learn about disability and services and all these new words and new language that is not English, but the language of special needs. About me, I can share that 17 years ago, I have my first job opportunity as a translator for the California regional center. At the same time, I start as a peer parent for the local family resource center. That's a warm line and nine years ago and I join the set at the mind Institute to provide resources, information, and supports to Spanish-speaking families. And today, as I say, I'm so happy to be here. Thank you.  

Jeiri Flores: So what would you say for yourself as you were navigating this world of service and this new language, what would you say was one of the hardest things you had to figure out? 

Maribel Hernandez: For me, The most important thing is that you learn to live with the disability. So this is your new reality and you need to adjust. I think it's very important to look at the resources. I love the support groups. I know there's a lot of questions about this, but I learned from my support group, I'm being attending my support group for 18 years. And I know that's a place that we can learn because especially us as Hispanics, we learn when we talk and we love to talk. I mean, we all know we are in this world of disability and we know how hard is to find services. How hard is it to understand behaviors, how hard is it to just day by day, It's hard. 

Jeiri Flores: As I hear you talk about this and all the work that you put in so that families can be successful as they receive services. What is something that you wish, if you had a magical wand, you would change?  

Maribel Hernandez: For me, that will be magic if we have a program for the families who receive a diagnosis, we can introduce the information step by step because they receive a diagnosis and they start to look to Google to get information all over the place and create more confusion and create anxiety. So if they have, and I know that this being existent because that's what I receive. I receive a book for parents and happened that I read it, you know, and I think it's important to start there with the early intervention book that they give you. And they say, this is a process. This is how you do, this is what happened when they turn three. I think that, as I say, we like to talk. We like to share, we like, and I think it's important to have this space for the families to have the opportunity, to share the ideas and listen to the ideas and the experience of other families on how they live this. Because coming from this program, you know, the peer parent, I think that's a wonderful thing because that's parent to parent. Because there's a lot of information, but that's from the professional to the family. And I think that's where is the gap. Because when you turn into a professional, you assume that all the people have the same information and it is not true. We forgot who we are talking with. I think it's very important to keep in our heads that these are new families, that they never hear about OT. They never hear PT. They never hear IP. They never hear all these acronyms that we use. This is how you make a complaint. Wait a minute. This is, you know, run, I think we need to go to the basics and start to help the families to crawl and then walk and then probably run. That will be the perfect scenario for me. That will be the way to go with the families. And especially with these days, with all these media and all these resources that we have, it's important for the families who already have some knowledge, but for the families that they don't have that knowledge, they need this, you can call it training or introduction.  

Jeiri Flores: So as your journey as a parent and as you push forward and you've worked with in your community, how have you empowered your sons to be, you know, themselves? You said happiness was really important, which I love that you said that because not a lot of people really think about that when they think about people with disabilities, it's more so I got to get them the services that they need. I got to get them to where they want to go. And it's like, you got a task list, right? And you're just checking off all the boxes. But you mentioned happiness, which isn't always something that people are even thinking about. They're more so we got to get them in the school. We got to get them in their works. We got to get them to live in their own apartment, but you mentioned happiness. So how is it that you've empowered your sons and what has that journey been like for you and them as you all have grown together? 

Maribel Hernandez: I just love my boys. They changed my life. They give me a job, two full-time jobs. But I always believe to do something for somebody else. First, you need to do it and you need to be happy. If you want other people to be happy, first you need to be happy. This wasn't easy. We worked so hard. We didn't have, you know, a culture. We have the quinceanera and we have the birthday parties and we have that. We missed that for seven years. We were our compromise was with the therapy. I think the fact that to see the progress and have a wonderful team working with them and seeing, because, you know, when I received the diagnosis, I was like, okay, It was always in my head. I don't care if they don't learn how to read, I don't care. I just want them to be happy. And they have to go to the school because there are too many people who go to the school and they don't have to know. They don't learn to do the math. They learn to be social people, to explore the work. I just want them to be, what I can do now is to be happy. What I have is to help them to have a nice life. So we work so hard with them in finding the things that they like and they will work for. And now it's a little bit, I think for me, it's a little bit harder because you know, Max is at that age that he's supposed to have a girlfriend and he's supposed to have friends and he's supposed to have all this social part that he has some part at the work. So he just expressed this morning, you know, I'm happy to go and say hi to more than 50 people. I'm like, wonderful. That's what I want to see. But he doesn't have a friend, anytime that there is an opportunity or activity in the community, I say, okay, max, they have this presentation, they are having this game, Do you want to be part of, and he is like, no, mom, thank you. Oh yes, mom, I will. So I present the options to him and he decides what he wants and he doesn't want, and I'm always ensured you know, to be there for him. I spend a lot of time with him because, you know, I'm so afraid that he can get depressed or he can get anxious because this you know, the social part is not there. So we have our day to watch a movie. We walk together, we go out, just max and I have dinner because Chris has more challenges. So this is only space for me and Max and just take the opportunities, you know, if there's something on the community and he wants to be part of that. I just let him go. 

Jeiri Flores: What does fun look like in your family? What does fun look like in your community, now as COVID has changed things? 

Maribel Hernandez: You know, with this current time, and Max did the presentation for the AUUCD when we used to start with this and he wasn't working yet. He was here at the house with me the whole time. And he said this is the best time of my life because I used to be by myself and my dogs. And now I'm with my brother and my mom. So for him, the COVID was fantastic. And for Chris, it's like, okay, Chris, what is the first place that you're going? You know, when all this happened and he is okay, the first time I'm going, it is my room. So they're happy at home going out and do something like this weekend We went camping, always take them out. Chris, take too long to get on an airplane, like 16 years, 17 years to take on an airplane because he was in a panic. And I respect that like we went camping and there are frogs, and I know how he feels about that. So I have, I take all the precautions, not to take the risk that he's going to see the frog. And probably this is not real life. You know, that's something that I can do for him. He is working so hard every day in his life. And now he's 19 years old. And I understand that there are things that he's not going to be able to tolerate because he has autism. Remember, he has a disability, so I need to respect how he feels. And if, you know, for me that I don't have autism seeing a frog is like, I just can't imagine how my son feels with that. So I'm very respectful of how he feels. And I'm very protective of all the things that I can put on the side. So just going out an adventure outdoors for him is hard, but we never stop doing that. We always push in for it, we have to do it. Let's try. Once you try and something really bad happens, then we can and adjust for the next time. Guess what? We need to try again. 

Jeiri Flores: As you look to the future and you look at all that you've done thus far in your career, what is something that you wish you can stamp so that you can be sure that the work that you do doesn't end with you?  

Maribel Hernandez: I don't really start to do all this, you know, looking for, oh, Maribel, you are doing this or that. I love to collaborate. I love to be part of the things that they're good for my community and at mind, I entered in 2013 and 2014, we start with this let’s talk Vamos a platicar. But that time it was two volunteers, two mothers with kids with a disability. And we start to put together all this information and say, okay, what do you think you need, you will like to know when you start with this diagnosis. So we create this let's talk and we put six presentations together. So we start as the presenters. There are people at the mind Institute who speak Spanish, so they can modify the information and they can present it. What we want is for this information to be presented to the families. But this last time, now that we are in the zoom, I take all these moms that they, at some point they were part of this let's talk and they empower themselves and they can share. So this last time out of six presentations, five presentations were presented from mother. And that's what I want to see. More peer parents, more parents having this idea that we can do it. Yes, we can do it. That was amazing. I was so happy when I see that I have six presentations, five moms were sent in for the community about how to you know, to live with a diagnosis. I think that's what I want. And when the parents say to me, Maribel, thank you. And I'm like, the best way to say thank you to me is to do something for your child.

Jeiri Flores: Thank you. I think that that was great. Thank you so much for the work that you've done and thank you for your stories and, you know, shout out to your sons for all that they are and all that they will be.

Maribel Hernandez: Thank you. Thanks for the invitation again.

Thank you for tuning in to AUCD network narratives. If this story has inspired you to make a change at your center or program, use the link in our show notes for resources and tools to help you lead on. We'd love to connect with you. So visit the AUCD website and click on the submit your story button at the top. We hope to hear from you soon.

 

 

Who is Maribel Hernandez?
The hardest thing Maribel had to figure out as she was navigating this world of service
What Maribel would change sofamilies can be successful
What fun currently looks like for Maribel’s family and community
The legacy that Maribel wants to leave for generations