62. How to Advocate for Sons with ASD and DS with Sara Lopez

Join us for an inspiring conversation about the importance of advocacy and community with the Sara Lopez, a dedicated mother of two, Enrique and Joaquin.

Sara shares her personal journey of advocacy, revealing how she navigated the emotional journey of IEP meetings and dedicated herself to ensuring the best educational opportunities for her sons. The conversation explores the critical role of community and the importance of fostering relationships with school personnel. Sara's inspiring determination offers precious insights for any parents finding their path through similar challenges.

 Sara opens up about her unexpected shift in parenting perspectives, her appreciation for her sons' unique talents, and how she navigates the delicate balance of her life roles. We discuss the power of family time and building a supportive network within the special needs community. Don't miss this episode filled with love, hope, and encouragement.

Referenced Organizations:

Down Syndrome Partnership of North Texas

Parent Resource Network
 
Wrights Law

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Transcript

Speaker 1: 0:00

In this group I have met attorneys. I have met a lot of women that are accountants and teachers and we've just recognized ourselves outside of being just autism moms holding down careers, working in big corporations, just successful women. It doesn't always just have to be special needs moms. There's so much more to us and once we appreciate that about each other and can look past our struggles and support each other in other areas that aren't just special needs, I think that's where the friendships feel most important, Because I need you to see me, not just me, as special needs mom. That's why those relationships mean so much to me.

Speaker 2: 0:47

Welcome to the Speech Source Podcast. My name is Mary Brazeek and I'm Kim Dillon.

Speaker 3: 0:53

We are two pediatric speech language pathologists with a combined 25 years of experience.

Speaker 2: 0:59

We are your source for speech, language, feeding, play and much more in between.

Speaker 3: 1:05

On today's podcast. We have a guest. Her name is Sarah Lopez and she has two boys, enrique and Joaquin. Enrique is in sixth grade middle school now and Joaquin is fifth grade, and I've had the privilege of knowing this family for a long time I think I was calculating around 10 years and I've been able to watch Sarah just navigate a lot over the last 10 years all the different therapies, figuring out the public school and special education, arts, ieps, all of the things, online class during COVID and teletherapy. There's just so many things that I have been in awe of watching her as a mom. I think she's incredible. I think she's a super mom, and so we just wanted to have her on today to talk about two of the things that we think are really important. One of those is advocating for your child I think Sarah has been very successful at that and also finding community, specifically community for moms or other parents and caregivers navigating some of the same life issues as you, and she's been great at that also. So welcome Sarah.

Speaker 1: 2:19

Thank you for having me. I'm so happy to join you all today. Do you want to tell us a little bit about your boys? Yeah, Enrique is my sixth grader. He's 12 years old and he has Down syndrome. He loves all things. Boy plays all the sports video games. He's just your guy's guy. He's popular. He's girl crazy. That's Enrique. Everybody who meets Enrique just loves him off the bat. Joaquin is my fifth grader and he has autism and he is very good about letting you know when you've made a mark in his space. Once he develops a relationship with you, you just know how special you are to him. He is very good about on the spot quizzing you about what he has shared with you. Are you listening to me? He's not as into sports. It takes him a lot to develop his relationships. The relationships are really important to him, and those matter a lot to him.

Speaker 3: 3:21

Yeah, one of the neatest things about your boys is their relationship with each other. Yes, I feel like that started off as babies, like as soon as Joaquin was born, in the way that he connected with Enrique. That is one of the neatest things to have watched with your family. How did you foster that? Was that just a natural development between those two?

Speaker 1: 3:44

I think they just compliment each other really well. I really can't even explain their love for each other because even teachers at school comment about it. While Joaquin was timid and really took a while to open up, Enrique was there making the way for him, opening those conversations with him play opportunities it was always Enrique did that, and then Joaquin has taken now the opportunity of quizzing his brother Names, colors reading. They just compliment each other and I wish I could explain or say, oh, I take full credit for that. No, they just have naturally been a really good duo. They are just really good kids and they love each other so much.

Speaker 2: 4:27

Wow, what a beautiful relationship that is so special. How many months apart are they?

Speaker 1: 4:32

They are 22 months apart.

Speaker 2: 4:36

They're pretty close.

Speaker 1: 4:37

Yes, we decided, oh, we're going to get in re-gib Brother, because everybody was like, when you have a kid with Down syndrome, they really need a peer model and we always knew we wanted more kids. It was like, oh, let's have a talk about it, and then boom, we're pregnant. We weren't really expecting that close of a window between them, but they've been great together with that age gap.

Speaker 3: 4:58

You talked about Benrique wanting to have a peer model for him, but in the same sense, do you think they have both helped each other?

Speaker 1: 5:05

I think they've both modeled for each other very well. Joaquin has been reading since he was about two, two and a half. He for years just sat and made Enrique read with him. Enrique is an amazing reader right now, which is a pretty big feat for a little guy. With the social aspect of it, enrique is just so sociable and I think that really pushes Joaquin out of his comfort zone without making him feel uncomfortable because it is his big brother.

Speaker 3: 5:33

Within Enrique. You knew y'all were starting therapies early. How old was he when he first started therapy?

Speaker 1: 5:39

We got a birth diagnosis and I was like I'm just going to love this away and don't want to care to read anything or know anything. My husband was the one who did all the research and he got us in touch with our local Down syndrome association. They had all start with ECI, which is early childhood intervention. We started when Enrique was three months old. He had about two to three visits, depending on the therapist, and he had speech therapy, occupational therapy and physical therapy. That was straight out the gate. We were like, oh, we're going to do every one of these, everything they say he needs. He's still in OT. He graduated from physical therapy at school. He is navigating his environment well and he's playing sports and all that Not competitively, but he's always down for a ball game with his friends and he plays on the Miracle League for baseball. He's done soccer talks also for soccer.

Speaker 1: 6:40

Joaquin was different because I'd come from a situation with a baby that didn't speak, didn't walk, didn't do a lot of things. According to the timetables of development, I got Joaquin. He walked at 12 months. In words he was reading by two and a half, so nothing was like a big red flag Until about the time he turned three and we started to see a lot of anxiety and issues with routine, those kinds of things that then told us okay, there's something bigger here. I would say autism was probably harder to accept because Enriquez was just like out of the package, here's your baby and he has this. Here's all these ideals and plans you had for this other baby. That was supposed to be a peer model for the first one. Now he's got a whole different diagnosis.

Speaker 1: 7:39

Autism was not like down syndrome, where everything's oh, you'll start this and this. Autism was like everybody's baby is different, everybody's kiddo is a different journey with autism. So navigating that felt very alone because it wasn't like you could meet another mother and be like hey, my kiddo has autism too, okay, but yours is verbal, mine is nonverbal, yours has anxiety, mine doesn't. Mine has sensory issues, oh, yours doesn't. So it felt very isolating. For a long time About that age we were preschoolers in that age group so while a lot of friends were doing the play dates and the mother's day out and all that, we couldn't start that because the separation anxiety and we couldn't do play dates because all of a sudden a change in routine was throwing our whole day off. So it was a very isolating window in my life, and then we started therapy and then he started school. It was a rough start there because there was no map for it.

Speaker 2: 8:42

I can definitely understand that perspective and how I think all of us, as mothers, are thinking about a playbook and what do you compare it to? And that's always so hard, and especially with the diagnosis of autism, where it is that spectrum that would be difficult to share your experiences. You said that you felt alone for that period of time.

Speaker 1: 9:08

Yes.

Speaker 2: 9:08

How did you feel more connected?

Speaker 1: 9:13

So with Enrique, when we were in the organization with the Down syndrome partnership, they had events for parents With autism. There wasn't really a group at all. It was like maybe you got your diagnosis through a professional in the area, maybe you got it through the childhood center. There was awesome moms out in Dallas but there wasn't anything local. And one day I was just on Facebook and a mom said we're meeting over at LeMattelein and it's just for moms of kiddos with autism. So I went.

Speaker 1: 9:47

It was just a bunch of moms introducing themselves and, I'll be honest, it was rough to go at first because I was just like I don't want to sit in a public area just complaining and whining about what my life looks like right now.

Speaker 1: 10:03

So I was very hesitant and then I went and realized, wow, some of these moms have gone through all this and come out. On the other side there were so many moms with older kids that were like, just get easier once they start communicating. There are some things that never get easier. So then from that group there was the big group that showed up and it just started getting a smaller niche of moms that you're actually on the same page with. So now I have girlfriends there that have kids that are a lot older, but then I also have some that have kids that are my kid, of same exact age. They're very similar and they're actually in school together. That's that was probably one of the biggest relationships that I've gotten out of this reaching out and being open to the meetup because it took a lot of convincing myself to go out and try to meet new people and that's how I was able to move past that dark area.

Speaker 2: 10:58

Wow, that's amazing. What are some of the topics that you did talk about? Was this how to navigate schools, or was it your day to day, just how to navigate parenting in that situation? Or what were the topics like In the group with my?

Speaker 1: 11:15

Down Center moms. It was very much of how to navigate school. It always felt like how do we advocate? We went to conferences on special education law with autism. It was just a different vibe. Honestly, I don't think we've ever talked about special education law and what to say, it's always been the meltdowns this week are over the top or who's still dealing with potty whitey. It just was a different type of situation. They both served what they needed to for that window of being a special needs parent.

Speaker 3: 11:51

One of our first conversations, when your first art was coming up with Enrique and we talked through some things because you didn't know what to expect. I had worked in the schools, but it wasn't the schools that I came from. We were trying to talk through some of the process and what to expect. I know we talked about having an advocate, president or not, but you were so proactive and just wanting to know what you needed to know as his mom, and the services that he was getting. Did you ever use an advocate or did you end up just learning on your own?

Speaker 1: 12:27

So I learned on my own and one of the girls I would go to the conferences with I would ask her to come sit with me at our meetings with her advocate hat on, but with my friend's support next to me. There was one time, close to his first art Enrique's art where I did have an advocate that was appointed to me locally. It was great having her there because I didn't feel like I was talking to a bunch of people and it was all their opinions against just me. But the part I didn't like was that she overtook the meeting and was making it about how she thought would be best for Enrique. And that's probably what pushed me to learn on my own, because I was like if anybody's going to talk for my kiddo, it's me. And that's how I got involved in wanting to learn and take the advocacy courses and all that.

Speaker 3: 13:18

I like the thought of having a friend there that knows what you know, because in those situations there's such an emotional piece. For me personally, when I've been in those situations where emotions are high, it's sometimes hard for me to remember what I want to say or sometimes get it out. So I think having that support of someone just to remind you of some things and encourage you to get it out is helpful, because emotions can take over.

Speaker 1: 13:49

I will say, our first several meetings I cried because you start with going over current levels and it just feels like this long list of all the things your kid can't do, all the things he's not accomplishing, all the things that he should be doing, and that's really hard. I've gotten better at it, because I'm like that's just present levels and needs to be included in his IEP. Let's get to goals where we could talk about what we're working on now. I've gotten better at controlling my emotions, but there were times early on where she had to call a break for me. And then Tommy, sarah, let's get it back on the track. Pull it together, girl, and move on, and we did so. It was extremely helpful and having a supportive friend to be there for you and just let you know you're not alone.

Speaker 3: 14:39

It's. One of the things I admired about you is that it's a hard process. The whole journey is hard and you have kept going and seen the benefits for both of the boys in school. It seems like y'all have had some tough times but you've worked through it with the school and then y'all have had some really great times and they're both thriving. You're such a great example of the whole journey and you've really tried to trust the process but also educated yourself enough to advocate and make sure things are happening like they're supposed to happen.

Speaker 1: 15:15

I think advocacy training is important. It's this is something you have to do. You don't have to go full blown and do the sped-law seminars.

Speaker 1: 15:23

I did, but at least understanding the process and always willing to be a collaborative parent and not a combative parent. Choose your battles because it gets exhausting and it gets really long and hard and these are the people you have to work with for years. You don't wanna waste all your energy on just fighting, because I think your kids feed off that and they have to know that you trust over your dropping them off and they'd be happy with your decision to leave them there. I think the best I get back is watching my kids smiling, coming out of the school and happy to be going there. I think, despite my kids not being able to tell me like about their full day, I at least know they've had a good day and they're happy, and that means a lot.

Speaker 2: 16:12

How would you suggest a parent get started with advocacy? Is there a certain website, or was it the Down to no Partnership that got you started?

Speaker 1: 16:21

So the Down to no Partnership posted about local advocacy and there's a local advocacy that's called Parent Resource Network and that's local to us. It's all of Texas but there are local branches. A lot of stuff could be a webinar that you could just log into. It could be as easy as just understanding the art process to where I've gone and gone through the whole sped law book, so it really just depends on what you're looking for. It could be managing behaviors with school personnel. It's just a whole slew of possibilities you could research into by going to one of those. But Parent Resource Network Wright's Law is also a good one and they have some segments where you just can click on and read about them.

Speaker 1: 17:03

Try a local organization that's hosting a webinar or has a speaker. I remember I went to a few of just understanding the art process and it was a local church hall and just a speaker there explaining the process and giving you a heads up on what your rights were and, if you asked for services, how long you'd have to wait, because there is a window and they have to complete it within that window. A lot of people don't realize that there are those guidelines in place to help us navigate the situation. That sounds like a very steep learning curve. It's a lot and it feels overwhelming. And that's why I'm saying when they put out webinars, you might just look at the one that appeals to you instead of feeling like you have to go through the whole thing.

Speaker 2: 17:50

Kim has shared a little bit with me about the amazing community that you have found with moms, so can you share a little bit about what your mom group looks like now? I think she shared that you guys went on a beach vacation together, just moms.

Speaker 1: 18:07

Yes, this is my autism mom group and there's about 12 of us who were in the original first girls to show up and COVID made it hard because a lot of us stopped coming to the meeting and when we came back we were just like we need a girls trip who would be down to go to the beach.

Speaker 1: 18:29

Our first year we went to Port Aransas and then the next year we went to Galveston and then this last year we went to Brokenbow. I have gotten to a point in my life where I want girlfriends that are just happy to support you, and it doesn't have to be support as a special needs mom, because I think for so much of my life I was just the special needs mom and in this group I have met attorneys. I have met a lot of women that are accountants and teachers and we've just recognized ourselves outside of being just autism moms holding down careers, working in big corporations, just successful women. It doesn't always just have to be special needs moms. There's so much more to us and once we appreciate that about each other and can look past our struggles and support each other in other areas that aren't just special needs, I think that's where the friendships feel most important Because I need you to see me not just me as special needs mom. That's why those relationships mean so much to me.

Speaker 2: 19:34

That's really interesting. What you said about not being seen as a special needs mom and seeing the whole part of you. I think that's something that I am very much learning as well and, to be honest, struggling with a lot of times when I'm in the thick of it with young kids is just finding my identity outside the title of mom in general, of just finding that woman, entrepreneur, business, all of those things I almost feel are even more important, and that you are able to appreciate more and celebrate the victories and see your whole life because you're a little bit forced to look past this one role that you have.

Speaker 1: 20:21

Yes, it takes a lot to be able to look at yourself. So many of us have so many special traits and so many amazing talents that we almost forget to let them shine because we're so busy thinking about others in our lives. And I'm not saying be selfish and make it all about you, but I really think if you find friends that acknowledge that and obviously partners are helpful too if they acknowledge that. But I think that's really important in a friendship and relationships.

Speaker 1: 20:53

As a grown woman, I feel like when I go on these trips with my other autism moms, for a moment we don't have to be at home worrying about is our kid going to walk out the door? Is this going to set off a meltdown? We just get to go out, take a breather. We usually schedule a time at the spa and we just focus on us for that weekend. And I realize that's a luxury to get to do that. But we plan long in advance and make the time and the effort to make it happen. And some of us have to go through hoops and everything to get the child care in place for us to be able to go away for a couple of days, which that's honestly a big deal for a lot of us, because you can't just leave our kids with anybody. I don't have family in the area, so the kids still don't have the permanence that we can pay.

Speaker 2: 21:45

Your boys have found that friendship in each other, which is so special, but we need the same kind of friendship as the people that are making us better and completing us and see us for our strength and weaknesses as well, and that just recharges you also to come back and be what you need to be for your family and for your kids and gear up for all the day to day things that are.

Speaker 3: 22:12

It's a lot.

Speaker 2: 22:13

What goals do you have for yourself? Are there certain things that you're planning, or for your family, or for yourself, or anything coming up?

Speaker 1: 22:23

So this year I took on being PTO president and in Alito it's a district-wide organization that's something that wasn't like a goal. I just started off as like a campus representative, but then as I got more involved, I was like I would like to take that on and it was something that I could do without interfering with my kids' schedules being able to still be at school, creating relationships and community in their campuses. And I've liked that and I've worked along some really good women that are, despite them not being special needs moms. They still have their best interest in their kids' education and their relationships with people in the community. So that was big for me.

Speaker 1: 23:07

And then the other goal I have is that I want to be able to accomplish a family trip and convince my kid Joaquin that it's okay to travel, because he's just not up for any trips. It's gotten to the point where he's I don't want to go to grandma and grandpa's, but once he's there he's having the time of his life and he doesn't want to leave. But getting him to try new things is that he's nah, let's just stay home. Let's just stay home. I think he just had such a great time when we were stuck at home.

Speaker 3: 23:34

I was going to say that's a testament to you. You've created this amazing home environment for him and all of you. We're here.

Speaker 1: 23:42

We're fine, we're good. Yeah, no need to travel long, it's fine. So I would like to take them on a trip and have a real family vacation experience.

Speaker 3: 23:51

You've given a lot of good advice and your thoughts on what you've come around to as a mom and having walked through a lot of these years with both boys. But if you were in front of a brand new parent that got a diagnosis and, just like you said, it just wasn't what you were thinking when you were going to start a family. Is there something and maybe you have experienced this just being around new moms and all of your connections but is there something that you share with them?

Speaker 1: 24:25

I think I find it difficult because I've come to this place in my life that I was explaining and I have to really empathize and take myself back to that person.

Speaker 1: 24:36

I was at the time because that person was in a whole, completely different mind space and I don't ever want to be insensitive to how that individual is feeling at that time, cause there's nothing anybody could have told me in that moment that would have made me really believe that anything was going to be better. So I think in a situation like this, where a new parent gets a type of diagnosis or they're in a moment where they just can't see the light, it's just allowing a parent to grieve and just reminding them that they could take it one day at a time and you don't have to worry about all your hopes and dreams being out the window, cause you get to create new ones, but still being sensitive to that that there is a time where you'll need to grieve and there is a time where you will feel like you don't have all the answers and maybe you were the kind of person that planned for everything and this is such a shock.

Speaker 2: 25:30

It sounds like being a good listener, just if someone is in that space that I bet you're a great person to be able to empathize and understand where they're at and be able to offer encouragement. But I love that you said allow the space to grieve and allow them to have the emotions that they need to. It just seems like that mindset seems to be across the board. The boys collaborate together and their friendship. When you collaborate with the school, we have these great friendships and then your whole family has this whole mindset of everyone has things to give each other.

Speaker 1: 26:12

I hope we all are giving what we give. We have rough days and there's days where I'm like I don't have any more to give, but trying at least and trying to stay positive is a big one. I just don't want to stay in a negative mindset all the time, because I felt like I lived there for so long and it's just not where I care to be anymore. I don't know if it was the lockdown and really getting to know my kids better, because for a long time it was just school and after school was therapy and therapy. I felt like I didn't really meet my kids and know who they were until we were literally thrown into the house together. I just saw their little personalities and so much more of them.

Speaker 1: 26:53

I really think that might have been the shift, because before that I was just so eager to make everything happen. It was just a constant this has to happen, this has to happen. How many more times do we need to do this? Now I'm just like it's gonna happen, it's gonna get done, we'll do it, we'll do what we need to do, and it's been a big mind shift.

Speaker 1: 27:12

Looking back, I'm like why didn't I just sit and hold him and appreciate him like a newborn baby, like what was so important about having to be 100 miles a minute all the time? It feels almost like when I finally led up and was like, hey, kid, can we just read a book? Or hey, show me what you could do with your calculator. I heard you've been working with your calculator. Can you show me that changed so much from the constant drilling and on top of them? Are we meeting this goal? Are we meeting this goal? It just became so different. My kid's gonna do what my kid can do and we're okay with that. We're not gonna keep going over the top. I don't need my kid to be the first president with Down syndrome. Like it's okay.

Speaker 2: 27:56

What a beautiful perspective that's so inspiring to think about. We all struggle with that. So much is feeling like you're on this train. The time is now. The time is when you're young, and that's really beautiful that when you stopped and were able to let go and just enjoy your child, play with them, appreciate them for who they were and invite them to share things with you instead of ask them to drill, then they really could show you everything that they were capable of.

Speaker 1: 28:29

And they're eager to show you that they can. It's not. Oh, here comes mom again with her flashcards. It was just a different approach. Oh, my gosh, kid, I heard you did this at school, and why don't you show?

Speaker 3: 28:42

me about it. I think that's such good advice for all parents, though, because no matter what skill level your child's at and it may not even be academic, but this is what sports, music, any kind of activity to just be able to see where they are and to see all of their strengths and, like Mary said, enjoy them where they are and not keep trying to constantly achieve that next level. I think that's so easy to fall into as a parent when we're just surrounded by constant kind of competition, and then we can also see where everybody else is.

Speaker 1: 29:17

You beat yourself up so much about where you're at and some days you could be like I'm trying my hardest and to somebody it may not be good enough. But right now I have to remind myself I'm good enough. So if that's what my kid's putting out, it's good enough. I don't wanna hold myself to those expectations anymore. As a mom, there was a time where I was just like I'm not doing enough. I need to do more therapy, I need to do this, and if it wasn't for the lockdown, I don't think I would have gained that perspective.

Speaker 3: 29:45

I'm a control person and I can see the benefit of just letting go of that control. I will say I still enjoy control.

Speaker 1: 29:53

It makes me feel secure. But it is a whole different kind of control. Like I can control our happiness, I can control our accomplishments, our friendships, that kind of situation.

Speaker 2: 30:05

That is really inspiring. I'm also a control person and it is it's really inspiring to hear from you.

Speaker 3: 30:14

I see a lot of the moments that you guys create. You're so good about family time and activities with the boys, and I do hope that Joaquin gets on board with that family vacation because I'm sure he would have a blast I think so too and then it would be all about what would be planned next and after that. So I do hope that happens for you and thank you. I just appreciate you sharing your journey with us, because stories are inspiring but also educational Just being able to hear someone else's story and how they walked through it and how they made decisions. I learned so much from that listening to other people and so I appreciate you coming on and being so open and sharing everything that you've walked through. Thank you.

Speaker 1: 31:02

I appreciate you having me. I've enjoyed my time with you, thanks for listening.

Speaker 3: 31:07

Make sure you subscribe to our podcast and check out our website, thespeechsourcecom.

Speaker 2: 31:12

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