Advocating from Every Angle: Kristie Curtis on Autism, LaCAN & Family Life

In this episode, we sit down with Kristie Curtis — a fierce advocate for disability rights, a passionate community leader, and a devoted mom to three amazing sons, each with unique abilities. Kristie shares her powerful journey into advocacy, her work with LaCAN (Louisiana Council’s Advocacy Network), and the role her unshakable faith has played in helping her overcome life's biggest challenges. Her story is a reminder of the strength found in perseverance, community, and believing in something bigger than yourself.

If you’ve ever wondered how to get involved in advocacy, how to navigate the education system, or how to stay grounded through life’s toughest moments, you won’t want to miss this conversation. Tune in now on Apple Podcasts, Spotify, YouTube, or wherever you listen to podcasts — and be inspired by Kristie’s incredible heart, resilience, and commitment to making a difference.  

Transcript

Mary (00:00):

Thank you for joining us for this episode of This Ability podcast. I'm your host, Mary Baudoin, and joining us today is Kristie Curtis, an advocate for disability rights and community empowerment. Thank you for joining us today, Kristie.

Kristie (00:12):

Thank you for having me.

Mary (00:13):

Absolutely. So tell our audience a little bit about yourself.

Kristie (00:15):

I am a single mother of three amazing young men. Bryson is 21. He is on his last year of high school, he was born with Trisomy 21. I was 19 when I had him, and then later on at 12 years old, he was diagnosed with autism as well. So he has a dual diagnosis of Down syndrome and autism. And then Aidan, Aidan is 17, graduating this year, planning to go to UL in the fall. He was premature and we noticed that four months old that he was developmentally delayed. And so he received services through Early Steps, Louisiana's early intervention system. And then once he went into school though he only received speech therapy for the first year.

(01:06):

And then they told me, "Look, he's saying words that we never hear from children his age, so we just don't think he needs services anymore". And now you look at him and you'd never be able to tell that he was developmentally delayed or premature for that matter. And then Christopher is almost 16 years old, recently, about two or three years ago he was diagnosed with high functioning autism. I knew early on, probably five years old, I knew there was something, he had sensory issues, had difficulties with textures and things like that. So it was definitely something.

Mary (01:38):

I knew about you. I knew about your son, but I didn't realize that you have three children all with different abilities and I know we have some moms listening, like it's hard to have sometimes just one child with a disability. I have Lexi and sometimes I feel overwhelmed. How do you do it? What tips do you have for having three and keeping your sense about you?

Kristie (02:01):

It took me a long time, longer than most I think probably, a good, say, the first 10 years to accept. But I think that's the first step, is accepting that this is my child and I love them no matter what, and then I'm going to do everything that I can possibly do to make sure they have everything they need to thrive. And so that's first and foremost of course, you are your child's advocate. You know what they need, you know them better than anyone.

Mary (02:30):

Well, speaking of advocacy, you do a lot and you have for many, many years. So I wanted to ask you, what inspired you to become an advocate? Was it one of your children, all three of your children, someone else? Tell me a little bit about how you started to get involved with advocacy.

Kristie (02:47):

Yeah, so I wish I could say it was something positive, but actually Bryson was abused by a teacher in third grade.

Mary (02:55):

Oh my God.

Kristie (02:55):

He would be hit with a ruler when he wouldn't comply. He was nonverbal, receptive and expressive language delays, not potty-trained and just it was, at that time I felt helpless, the way I found out, I could go into detail, much more detail about the whole situation but what it came down to was I felt helpless. Felt helpless, and like I had failed to protect him. The way this was handled lit the fire in me that burns inside of me to advocate and to teach others to advocate. And then when the leader position became available while I applied, I didn't get it at first. Instead, I took the community outreach specialist position at Families Helping Families, and then a few months later, the leader position opened up, I reapplied. I was determined to reapply until I got it because all I could think, I've been advocating on a local level for my son for years. I really enjoy the advocacy part of it. I didn't enjoy having to be so blunt, at times and demanding, it does feel like we have to demand that they do right for our kids.

Mary (04:02):

Correct. Sometimes to get people's attention, you have to be forceful because if you're sweet and polite and quiet, they overlook you.

Kristie (04:11):

Yeah.

Mary (04:11):

Kristie's part of LaCAN, right? The Louisiana Council Advocacy Network. And you are currently, are you the leader for Region Four?

Kristie (04:19):

I am the leader for Region Four.

Mary (04:21):

So tell us more about the leadership role for LaCAN, what are some of your responsibilities there?

Kristie (04:28):

So as the leader of LaCAN, I'm responsible for getting our community involved, educating our community, our community leaders, helping individuals with disabilities and their families to tell their story, to be able to share their testimony at our regional roundtable and during legislative session at the Capitol in committee meetings. It's very, I would say, empowering to see families, moms, dads, individuals themselves, getting up to that table in a committee room of legislators and sharing how the laws and the policies that they create affect us.

Mary (05:10):

How does someone engage with policymakers or local governments, elected officials to address disability rights in their communities? Some people might feel a little intimidated, but what procedure or what tips do you have to share for someone interested in doing that?

Kristie (05:25):

Right. It's been about five years I've been leader and I've met with our legislators and I help educate them. And I still feel intimidated sometimes, but I think the key to engaging policymakers is to remember they are people just like you and I who are elected by us to represent us and our interests. Policymakers need to hear from us because many of them have no idea what life is like as an individual with a disability or raising a child with a disability.

Mary (05:54):

What do you think is the most effective way to raise awareness about disability rights? There's probably multiple ways, social media probably plays a role in that, but I'm sure there's some other things too.

Kristie (06:06):

Yes. First I'm going to start by saying Louisiana is set apart from many other states when it comes to grassroots advocacy. I have sat on national meetings where representatives from other states are on this meeting or this call, and when I mentioned LaCAN and what we do, they are surprised. They're so interested, they want to know more. Knowing we, for a few decades, we have built a grassroots advocacy network that has proven time and time again, year after year to be effective in creating systems change, when a community is brought together with a common purpose, a common passion, and a personal lived experience, it evokes real emotion and truth. It's real lasting changes made. I think as a newer leader coming in, there are some leaders that have been a part of LaCAN for much longer than I have, and there are ways that they engage with policymakers and the community that work for them. And then social media came along, and that's in a lot of ways, that's how our community and members are engaging now. There's so many tools that we can use with our policy.

Mary (07:22):

So just looking ahead, what are some of your top priorities for advancing the disability community in the near future?

Kristie (07:30):

So my priority for advancing accessibility and inclusion is educating the community and empowering individuals and families to advocate for themselves, which can lead to meaningful and long-lasting change. Encouraging people to use their voices and share their lived experiences creates an environment where everyone can engage in shaping policies and services that impact their lives. Right now, I think we're on a defense. That's our mindset right now is defending the services that we currently have. But there's, in every area and every aspect of disability, there is always room for improvement.

Mary (08:10):

Just this past weekend, I saw a post on Facebook. I'm part of a group from a certain parish, the original parish that I'm from, which is the Royal's Parish, and the woman who posted said that her son is autistic and is in high school. I don't know if he's in a special ed class or regular ed. I'm really not sure what his level was, but he's being bullied by other students and I think even physically harassed. What advice do you have?

Kristie (08:38):

We have addressed this issue and there has been legislation on bullying. And I know from my experience, our school takes bullying very seriously, and I've heard other schools have strict bullying policies. I would definitely research the policies that are in place in that area, in that district, and then you always want to start at your local level and see what you can get done that way. But if there's always a step up in your advocacy, if that's needed, and so would definitely, she can always contact if Kristen is her leader, contact Kristen. But definitely don't give up and advocate. Definitely it's in law, there should be stricter policies in place, so I would definitely start there.

Mary (09:28):

Right. On the flip side, for the parents of the child who is doing the bullying, what suggestions or tips do you have for them to help their child understand that what they're doing is not okay and that there are different people out there that have different abilities? What message would you want to send to them?

Kristie (09:47):

Teach your children about people of all different cultures. We all look, not one of us looks the same unless you're a twin, but even then they're different as far as personalities go. It's okay to be different. It's definitely a strength, I think to be different. We need to teach our young kids that doesn't it just come down to respect and empathy? Teach your children empathy and respect for others, especially others that are different from them.

Mary (10:19):

It seems like there's a lot in social media too. If you follow the wrong groups or you follow a group that's more desensitized to appreciating people that have different abilities, then that might be building the influence of that kid to like, okay, if I've seen it on TikTok or I've seen it on Facebook that it's okay to do this or talk to someone in this way or touch someone in this way, that it's okay. It's not.

Kristie (10:44):

Yeah. I think also as adults and raising children, we need to be conscious of the things that we say, the comments that we make, our reactions in front of them because that's the first place they learn and they pick up on things that make us human.

Mary (11:05):

So if someone is listening and they're interested in getting involved in supporting disability advocacy and making a difference, whether they're a parent or a friend of someone that has special needs or a teacher, how can someone get involved? What's the first steps that they should take?

Kristie (11:21):

So if you want to get involved with the LaCAN, the Developmental Disabilities Grassroots Advocacy Network, you can reach out to your leader. It depends on what region you're from. You can go to the council's website at www.laddc.org, and if you click on LaCAN, there should be our information. Each LaCAN leader is listed there with our information.

Mary (11:45):

Yeah, I saw a really nice graphic on Facebook. I'll probably share it in this podcast. Areas of... How many regions are there in Louisiana?

Kristie (11:50):

There are 10 regions, but there's nine leaders. One of our leaders covers both regions one and 10, which is like the New Orleans area.

Mary (12:00):

That's great.

Kristie (12:00):

So if you are wanting to join us for our yellow shirt days, we have yellow shirt days during session, but sometimes even outside of session, BESE meets outside of session. There are some committees that also meet outside of session where we'll have a yellow shirt day in Baton Rouge.

Mary (12:19):

If someone's not familiar with yellow shirt day, tell our audience what that is.

Kristie (12:23):

Our yellow shirt days are days when we as a collective, we put on our yellow shirts and we meet at the Capitol building in Baton Rouge. Usually we have certain bills that we track during session. We have an agenda going into session, and so depending on what's being heard in what committee on what days, usually our bigger yellow shirt days or when HB-I is being heard in appropriation. So you can bet there'll be a yellow shirt day every year for that bill. We will recruit our members in our respective regions to see who can come out that day for free yellow shirt day.

(13:03):

If we need to carpool, however to make that happen, we will. We'll all meet as a group, all leaders and the members from their areas meet as a group for that committee meeting, all dressed in our yellow shirts. And the goal is to try to fill up the seats in the committee rooms. We want a sea of yellow, and we're actually, our legislators know us, and even those employed at the Capitol, they know us as the yellow shirt. We're not referred to as LaCAN at the Capitol.

Mary (13:35):

That's good.

Kristie (13:35):

Yellow shirt days are fun. I love them.

Mary (13:39):

Yeah.

Kristie (13:39):

As the LaCAN leader, this is my job, but it just never feels like a job. This is not, I don't look at it as work. It's hard work, I feel like I'm doing God's work, but it never feels like a job.

Mary (13:52):

Regarding the agenda, if we can go back to that for a second. Is the agenda that you guys have, is it published on the website or how can someone go about finding more information about the agenda? What topics will be covered with sessions, things like that?

Kristie (14:07):

Right. So every year during the summer, LaCAN leaders host community input meetings, and at those community input meetings we are gathering the community's input on the issues that they see, and we gather all that information and we submit it to the Developmental Disability Council and they decide, they use that information to decide what their agenda will be for the following session. And once that is set, staff gets to work on fact sheets, and that is eventually posted on the council's website. Usually by December, that'll be posted on the council's website under fact sheets. If you click on LaCAN, there'll some options on the side of the screen.

Mary (14:53):

And this is an ongoing cycle every year, right?

Kristie (14:56):

Every year, yes.

Mary (14:57):

New topics, new faces.

Kristie (14:59):

Right. And we've been, we really have made such... It has made such a difference every year.

Mary (15:06):

That's awesome. On a personal level, what keeps you motivated to face some of the challenges that you guys have faced in the past?

Kristie (15:14):

Remembering my 'why'. My faith is unshakable at this point in life. I've heard the past is the past, and I agree it is the past. However, when I'm faced with challenges, I pause on my journey for just a bit to look back and see how far I've come after overcoming so much. That's my motivation and it's a good reminder. I picture myself just pausing and looking back over my shoulder like, oh, well, if I could do that then I could do this.

Mary (15:46):

So to date, what would you consider to be your greatest achievement?

Kristie (15:50):

My greatest achievement personally is I have been a single mom their entire lives. I have raised three amazing young men by myself. When Bryson participated in graduation in 2023 is when it really hit me. We did it. We made it. That is really truly my greatest accomplishment, and you can ask me this in 30 years from now, 60 years from now, and it'll probably be the same thing.

Mary (16:16):

So the same question, but on a professional level, what is your greatest achievement?

Kristie (16:20):

So I feel like every year there is an achievement that I'm just so proud of, but I think for me, both professionally and personally, but bring a little personal into it. The year that, I believe it was 2021, we advocated for cameras in classroom and that year that has been something that I was advocating for for a long time by myself on a local level and I wasn't getting anywhere. And so us going and advocating for cameras in special education classrooms, that January, and that was already set by that December, they set their agenda in October. That January rolled around where we were starting to get prepared for session and scheduling our roundtable and trying to do legislative visits.

(17:10):

And I was put in touch with a mom that wanted to speak up, and I learned that it was January that her son was abused at a school in our region so this was so fresh for that mom. I remember being in her shoes and I wish I would have done what she did and reached out because she needed to speak about it. Just being put in touch with her and helping her to overcome some doubt and things that she was feeling at the time about speaking up about it and helping her to draft her testimony. And finally getting down to the day where she came to the Capitol and she shared her testimony and committee, that has been my greatest accomplishment. It really has. It made everything that we've been through and all the work and effort that I put into this so worth it.

Mary (18:10):

Well, and I want to thank you on behalf of, well, everybody in the state of Louisiana for your advocacy work because those are huge strides for our children.

Kristie (18:23):

And I want to make it a point that I don't do this work for the accolades or attention or anything. Really, that day where she came to committee and shared her testimony, that was healing for even me as a mom because my son had been through it. To empower her to get up there and tell her story and it was so fresh and I know it was healing for her too. It was still early, but I know it was healing for her family too. That's why I do it. That's what I do it for, because I remember feeling helpless like I had failed to protect my son. And so whatever I can do to help other individuals and other families speak up and advocate for their families and their children with disabilities, I want to do that. It's not just one person, it takes all of us.

Mary (19:13):

And I think I might know the answer to this already, what's the biggest influence on your advocacy work?

Kristie (19:18):

So the biggest influence for me is my sons and the experiences we've had and the challenges we've overcome. That's the biggest, the way I see it and in both areas of my work, both as a community outreach specialist and as a LaCAN leader, I do this because I remember how it felt for me not knowing where to or how to reach out or who to reach out to and what services and supports were [inaudible 00:19:47] us. Knowing now the difference that sharing our story can really make, it was just a couple of sessions ago, I shared testimony in committee on the virtual option for our community. Bryson was with me at that time and to see a legislator from a different region run out of that committee room just to meet Bryson and shake his hand, let me know that he's doing everything he can to make this happen.

Mary (20:19):

That's got to make you feel good.

Kristie (20:20):

Yeah, it definitely...

Mary (20:23):

And Everybody else around you, I'm sure.

Kristie (20:25):

It definitely does. It definitely does. For so long earlier in life, I didn't have a good understanding of what I had on... I felt like isolating us was in our best interest, and I didn't realize then how wrong I was. But hiding from the world isn't help the world. The only way people who don't deal with it on a daily basis know about all these different aspects of raising a child with a disability or what it's like to be an individual with disability...

Mary (21:01):

Because some days are tougher than others.

Kristie (21:02):

The only way they know is if we're out there, we're living in the same communities and going to the same schools and accessing the same stores and just anything, it's important. It's important to speak about it. And I'm always, I tell anybody, especially children, whenever they first meet Bryson, they'll look at him. They can tell that he's different. And I just made sure that I'm there to answer questions.

Mary (21:30):

I love it, especially when I see a little a five-year-old come up to Lexi or they'll ask me, "What's wrong with her? Why is she in a wheelchair?" I love that. I love questions because I want them to see there are children like Lexi out there and your son is out there, and it takes all different kinds to make the world go around, right?

Kristie (21:50):

Right. And they're so innocent, especially children whenever they're asking questions, ask it in a way that if an adult asks it that way, it might come off as rude. They don't mean that, they are really, truly just curious and that one conversation may change the way they think about people that are different than them.

Mary (22:08):

You mentioned that you're doing God's work. How important is faith to you in your life?

Kristie (22:14):

It's probably, besides my sons, my faith, even more than that, my faith is the most important thing in my life. There was a time where I didn't have faith and I thought God had forgotten about us. Now looking back, there are so many spaces and times where he was there, he showed up and I can see that now. And so my faith is unshakable, the way I was saved, no one can... That just can't be explained by science. My faith is truly unshakable at this point, and so everything we go through, I have so many crosses in my house I lost track, there's a cross on every wall.

(22:57):

When I open my eyes in the morning, there's a cross right there on the wall, and that's the first thing I do. It's reminders for me, this is a reminder for me. I didn't get it for anybody else. I need to remember because fear kept me in a dark place for years. And so that's what this was, just that permanent reminder for me that anytime that fear is creeping in or fear is trying to take over because it's still there, but it's that reminder to say, maybe all I need is to just have a conversation with or just let, "I'm not understanding this. I need your guidance", or just to turn on worship music in the car some days.

Mary (23:37):

This has been a great interview. I wanted to ask you, are there any topics or anything we did not talk about that you would like to mention?

Kristie (23:45):

I think we've covered everything. I had thought about, I want our community to know that I'm here if they do want to know how to get involved and to share their testimony. And LaCAN is on a state level, so locally we don't really advocate locally, but I can also, if I can help, if there's something that a family or an individual wants to advocate for on a more local level, I will do everything I can and share all the knowledge, things that I have to share.

Mary (24:15):

You're a wonderful resource. I'm sure all the leaders on the panel are good resources to reach out to, even to help open the doors or say, "Okay, this is who you need to contact regarding some local..."

Kristie (24:26):

Because for a long time I don't think I was very effective. I was upset.

Mary (24:29):

I'm sure you were.

Kristie (24:32):

It was a lot. But looking back, had I approached it in a more calm and respectful manner, we might've gotten somewhere.

Mary (24:42):

Well, thank you for being here, Kristie, I really appreciate you being here today. And thank you all for listening to This Ability podcast. If you enjoy listening to our podcast, be sure to like our Facebook page and subscribe to our YouTube channel at This Ability podcast. Thank you for listening, and we'll see you next time.