Black Feathers 3: Inclusion and Developmental Disabilities with Miranda Carman

In episode three, Black Feathers hosts Crystal and Shauna, along with guest Miranda Carman, a member of the Muscogee Creek Nation and a clinical social worker who’s also a passionate advocate for children with autism and their families, will discuss Miranda’s own personal experience caring for her son with autism and the challenges they faced as a family with trying to get a clear diagnosis from physicians within the Tribal community. All three women hope this episode and the resources provided, help shed light on the early signs of autism, emphasize the importance of parental advocacy for children with autism, and the importance of culturally rooted services and treatment.

For the full list of resources, please visit: blackfeathers.org

Transcript

Crystal Hernandez: 0:00

Welcome to black feathers podcast, a true and honest conversation about disabilities for all. I'm your host, Dr. Crystal Hernandez from the Cherokee Nation,

Shauna Humphreys: 0:09

and I am Shawna Humphreys from Choctaw Nation.

Crystal Hernandez: 0:12

Today, we have Miranda Carmen with us from the Muscogee Creek Nation. I met Miranda a few years ago, through our tribal autism work on a national level, we then discovered we had so much more in common than just the love of the work. We discovered, we both lived in Oklahoma, we both had children who were autistic. And in fact, they were both receiving services from the same place. So from that point on, I am so thrilled and happy to call her a friend and a sister. So Miranda, welcome.

Miranda Carman: 0:43

Thank you. Thank you for the invitation. And I am glad to have met you as well, Crystal, and it's been a pleasure getting to know you over the past, I guess, a couple of years now. And just all of the wonderful work that you do in Indian country.

Crystal Hernandez: 1:03

Thank you. So why don't you tell us a little bit about yourself and in some of the work you do, but then also your personal tie into the disability community.

Miranda Carman: 1:15

Okay, so, Miranda, Carmen, I currently serve as the secretary of community and Human Services at Muskogee Creek Nation. By background, I am a licensed clinical social worker and spent the prior to me taking this position at the tribe served as the mental health lead at Indian Health Services headquarters. And so in that position, I was able to make the connection with the interagency group at the federal level. I'm involved in a lot of things at the tribe that deal with social services and social work. But I will say that, since my son was diagnosed with autism, it's been a big piece of my heart. And it's been something that I've been passionate about ever since. And just, and I'm glad to be on today to be able to share a little bit about what I've learned and a little bit about my story and accessing services in Indian country. So I guess I'll start just just start from the beginning of whenever I first started to see warning signs, and I hope that some of the experiences I share today are helpful for moms out there. But, um, some of the early warning signs that I saw and my son, he around age, right before his second birthday, he started to lose a lot of his language. And I, you know, was, you know, thinking and knowing that I had, you know, not a lot of experience with autism, but I, I'm gonna go back, so I didn't have a lot of experience with autism. But I did have some introduction to autism and kind of what to look for. And so I was started telling my husband, you know, well, he's, he's losing language. And he was like, well talk to the pediatrician about it. And I was like, Okay, I will. And so when I went in to talk to the pediatrician, he had a son that was on the spectrum. So he was somewhat open to it. And, you know, just kind of hearing me out and my concerns, but then he was still very hesitant to provide me with any referral, or anything like that. And this was here at our health clinic at the tribe. And so after seeing him a couple more times, I think I finally convinced him that, you know, I think it was at least, you know, enough to be concerned and enough to make a referral. And so we made, you know, he made the referral for us. And we were placed on a nine month waiting list. And so there, you know, I was like, wow, okay, well, this is different. It's not, you know, all of the time that you have to wait nine months to, you know, figure out what's going on with your child. And so, you know, we're on a nine month waiting list. And so I would say he's probably at that point, by the time I convince the pediatrician, he's probably three. So another nine months, he was almost four, by the time that we got the diagnosis just to kind of give a, a little bit of a timeline of just you know how long it took from two to four. For us to you Have a door open for him to even receive any type of service. And so I think that's, you know, a lot of moms and parents, that's their experience, unfortunately. And I think that it's getting better as time goes on, just because of there's tons of advocacy work happening. But I know that it can, continues to be a barrier. And just lots of, you know, awareness that needs to be brought to the importance of early diagnosis, and how important it is that the earlier that the child can get, you know, that diagnosis, you know, the greater chance they have of making just leaps and bounds to recovery. So, so after the diagnosis, of course, that was something that, then we have that and I'm doing research, I'm learning as much as I can, I'm reading all of the time just trying to, you know, learn and recognize things that even I wasn't paying attention to. Before the diagnosis. So once we had that, I was like, Okay, now, I know what I, you know, I'm, I'm kind of dealing with and I can kind of, now I can shift my focus just directly to that it's, you know, it's definitely autism. And, and so some of the things at that time that began to be challenging is one where we were right outside of Tulsa, but there was only one ABA provider. And at the time, I was working for the tribe, and our insurance wasn't covering it. And Oklahoma insurance wasn't required to cover it at that time. And so that really left us in a place where now we have this diagnosis, and there's not a way for us to access treatment for him. And so there were a couple of providers doing some play therapy type models in Tulsa. So we were taking him to that we were taking him to speech, occupational, just doing anything that we could get access to, through our insurance and even paying out of pocket for some of the play therapy. But, you know, as we're waiting for, you know, the, to have an insurance option, that that was kind of the path that we we had to go on. And so I was working at the tribe, like I mentioned, and decided that I was going to apply for a federal position, because in all of my research, I found out that federal insurance plans if you're a federal employee, that they did require insurance companies to cover ABA therapy. And so that's how I ended up in the position where I'm at Crystal with IHS and IHS headquarters. And so from there, we had another door that opened for him. And we were able to get him into ABA therapy. A little bit about I guess, or, you know, as he got older, and he, you know, started to I would say wander more safety became like just an increased risk for him concern for me and my husband. And so I just been reflecting on you know, we had locks on our doors that were high enough where he couldn't get them. And so it was like a separate lock, and we have locks on all of our windows, because he loves to be outside. He loves to be barefoot still to this day, he would prefer to be outside who doesn't wander now. But, you know, back then he, he loved to wander. And we had a couple of ponds around us. And I mean, lo and behold, if you wanted to know where he was at, you can guarantee that if you didn't see him in your first site that you needed to go to the pond to because he was probably going to be standing there looking, and he never jumped in the pond. But he was standing there looking every time that we found him and it was just the that was the scariest thing as a parent. And so I want to definitely mention that because swimming is been the biggest blessing for my son. And it relieves so much stress for me and anxiety for me when he learned to swim. Um, he's 10 Now, but he learned to swim when he was seven. And so I want to mention that piece just because I know that parents out there that I know that They probably had those same concerns. And when you see it on the news that is, you know, unfortunately, like, that's the, just the horrific thing that is in the news, when something does happen to a child, but it is very true that, you know, he always migrated to water, and we have Lake houses, and he would do the same thing at the lake. And we would have to have someone literally, with him 24/7 When we were at the lake, before he learned to swim, and if he ever got away, or you know, took off, he was going to be running full speed ahead to the water. And so there were there wasn't going to be any stopping if he decided he was going in. And so it just, it's, it's so scary, but just such a big, you know, if they can learn to swim and swimming lessons and just getting them, you know, it's It relieves a lot of risk, and increases the safety. But back to the treatment. I just want to mention, I wanted to mention that piece. So when we started ABA therapy, of course, I was reading like there's, you know, some negative reviews, there's some positive reviews, and there's mixed reviews, I guess, about what ABA therapy can provide for your son. And for our son, I had read that it was, you know, evidence based, it's the gold standard for autism. And, you know, as a practitioner, you're always looking for the best possible, you know, evidence based practices for your your patients. And so, you know, I really was open to ABA therapy, even with the mixed reviews because of the research that had been done. And I can say today that it worked for my son. And I'm thankful that the doors were opened at the right time. They helped us with potty training. And he was around age five, which was a huge, huge help for us. And they came to our house and you know, gave us all kinds of tips and tricks. And we spent a couple of days literally doing nothing but documenting his every move. And by the end of that week, we were on our way, and he was fully potty trained. And I was jumping for joy at that point because it was another just huge, huge, huge, huge relief. At so his his ABA therapy. He was in ABA for about four years. And so he started to transition out of ABA therapy during the pandemic. And so he's now going to school full time when he was doing ABA. There were points during his therapy that he would do a half day at school and then go to ABA therapy. So it just really depended on, you know, some days he would do full days at therapy. Some days, we really did, you know, try to integrate him as much as we could into public school. But now he does spend full days at school. And it's amazing, because in the beginning, that was not a possibility for him to make it even through a couple of hours was a big deal. And so for him to spend, you know, full days at school now. He's in the fourth grade, and, of course, has an IEP and, you know, that's another thing that parents, you know, we're their biggest advocate, we have to read and research and know about all of these things that our kiddos need. But just we're our biggest, or we are our child's biggest advocate and making sure that they have, you know, the best education options in front of them. There's, unfortunately in Oklahoma, not a lot of there's not a lot of autism schools. And I husband's from Virginia. And, you know, that's it's a very common thing in Virginia that autism schools are in every, you know, probably in every county, and there's county funding for it and it just it's it's a lot different. And so it's unfortunate that Oklahoma doesn't have more to offer in that area. But I will say that it's important to just make Make sure that you stay connected with your local school, and that you're advocating that they're doing all that they can to provide your child with the best educational options.

Crystal Hernandez: 15:13

So you mentioned a couple things, you mentioned a couple things, I just want to circle on, you know, super significant things that you've said, you know, you talked about just the, the, the time that it took to get you from, I have some concerns or some questions about things I'm seeing and feeling about my, my child, to the point where you actually get number one, the referral to have an assessment, but then the assessment. And so do you see that, you know, now in your new capacity, you know, working with with tribal citizens and in other tribal nations? And do you see that there's a massive gap among providers still? Do you see those long waitlist still?

Miranda Carman: 15:58

I'm not super hands on with behavioral health, but from what I have heard from some parents that have tried to access services, that yes, there are not a lot of providers, there are not a lot of places to refer to, and I can't speak on the pediatrician. And you know, if that has gotten better or not, but I do believe that there's still a significant gap in providers and providers being able to get those assessments done early. Because like, we both know, it's, it's the most important thing, and then opening up that door, you know, so that they can have access, if they, you know, are diagnosed, that they can have access to those critical services?

Crystal Hernandez: 16:55

Absolutely. And, you know, even to take it a little step further as yes, we know, there's a huge demand and not a whole lot of supply in terms of those professionals able and capable of diagnosing. But there's even less of us that are natives, who really understand the culture, and who can really serve in a different way, there's even less. And so that is just something I'm hoping we'll see change in our lifetime.

Miranda Carman: 17:25

Yes, that would be phenomenal. And I think this, you know, is is one place to start. And I know you're a huge voice crystal for this work, and just bringing, you know, the awareness to this issue that we do, we do need more people. And I know that, you know, we're moms, so of course, we're invested in this, but it would be nice to see even others outside of, you know, the mom network that would join in this fight so that we are able to get more of our native providers on board.

Crystal Hernandez: 18:03

Absolutely. And then the other thing you mentioned, and I just really want to make sure that we emphasize it is the elopement and wandering and then the inclination towards water. Because we know research, we know the data that's published is that our kiddos who are autistic who do elope or wander, they do wander towards the water and treat teaching swimming lessons is vital, because they drown at disproportionate massively high and terrible rites. And so that is amazing that you took that step because you knew that he was drawn to the water, you knew that he he did have this tendency to want to be out. And and you took that step. And so I hope that others can kind of step in that same direction. It saves lives.

Miranda Carman: 18:55

Absolutely. Yes, yes. And I spent a lot of time with my son in the water. And we didn't do any professional swimming lessons. But any chance that we had we were in the water and just giving him every opportunity to learn and just working with him. And I would say in the beginning, even he wasn't a real fan of learning to swim even though he loved the water and I think the resistance to the water, it was stimulating for him and he liked the feel of it. But there was some there was a time I guess whenever he was getting over, maybe a fear when it came to learning to swim because it wasn't natural. But once he you know started to kind of figure it out and learning to tread water. He he took off and he's I mean he is a phenomenal swimmer. He's mastered the backstroke, he can do the backstroke better than Probably the majority of people in my family. So it's pretty amazing. It's

Crystal Hernandez: 20:04

wonderful. You know, the other thing I just want to kind of talk about, that you mentioned is you started in your tribal network. And you started through the pediatricians and clinics there. And I've talked to, you know, so many people around different states in tribal clinics, and and that work with children. And I've asked some of them, you know, do you screen? Are you following the guide? The guidance? Are you doing 18 months and 30 months and continual developmental? Monitoring? Are you doing those things? And? And I wish that the answer was overwhelmingly, absolutely. But it wasn't. And so. So that's one thing, I hope we see changes that, that folks are being taught this, that they're given the resources to be able to do screenings. And then if they are doing screenings, that actually has a trigger to a referral. And then and then that the referral doesn't take nine months, one year, two years, in some places, we're hearing up to two years of a wait in order to get a diagnosis. And really, what we're saying is, is that diagnosis, like you mentioned is is the key that opens the door, so that you can get the services and supports whatever that may be, whatever that choice may be for the family, or the need may be for for the individual. But it's definitely needed and going through this whole process to wait a year or two. It must be excruciating. For some families, I know I went through a weight as well for my own family. So I'm just curious now that you've stepped into a different role. Do you think that there's a renewed or expanded focus on developmental disability screenings assessment services within tribal nations that you've that you've been made aware of? are part of well,

Miranda Carman: 21:44

I will say that we've recently at Muscogee, Creek Nation received a HERSA grant. That is, for it's the F two F, and so we're going to its Health, Health Information Center for families. And then I'm also hoping that we can get some support down the line to be able to expand that small pot of money, but we do have enough for one FTE for one person to come on board, and to solely focus on Developmental Disabilities, which is the first time really that I know that this has happened. So I do know on the tribal side, that there is a focus on it. We did a community survey not too long ago, that we were just wanting to hear from citizens on what was their concern coming out of the pandemic? And, you know, where could we best support citizens and one of the responses that we received was for special needs children. And so that, you know, really caught the administration's eye, and attention. And so we've definitely focused in on that. And, and like I said, we were awarded, I think we're the first tribe to be awarded tribal government to be awarded the HERSA, F to F health information center grant, I believe the South Central bear consortium was also awarded. And so I'm just I'm really looking forward to building on that. I know that, you know, it's every little step, it seems like you just keep kind of moving forward. But in those efforts, I believe that we'll have a chance to sit down with our health partners, to sit down with our practitioners inside of our clinics, and to really talk about what those screeners are and the importance of those screeners and making sure that we're making those connections for our families and our communities. Thank

Crystal Hernandez: 24:00

you. And I have one last question. And then I'll let Shawn ago, looking at your own journey, what would you say to your fellow tribal families that are just starting theirs?

Miranda Carman: 24:10

I would say would you say before diagnosis or just any?

Crystal Hernandez: 24:17

I would honestly say looking at the totality of your journey that you just described to us. What would you tell somebody who was just starting their journey on the autism journey in Indian Country? What would you say?

Miranda Carman: 24:32

I would say that be be the best advocate that you can for your child, no matter what you're trying to access and know that your activism and your participation is is going to pave the road for somebody else. And I think that's the most important thing right now is that it's it's new There's, you know, still even at the federal level, as you know, you know, it's still we're trying to garner support for resources. So I think it's just continuing to have conversations when you can, in, in all facets, to make sure that, you know, people are knowledgeable, and are aware of the barriers that families are facing, that people are aware of some of the challenges inside of our health system, I think just being open about our experiences, parents, but really, knowing that it's a journey, it's a process. But what it looks like right now, it will not always look like that. And so just sending a big message of hope that stay, you know, stay locked in, stay involved, even though I know that it's tiring, it's, it's so tiring, your efforts and everything that you put in, will pay off and you will start to see tremendous results as time goes on. And unfortunately, that's kind of the thing in the background is time and, you know, you're waiting and waiting to see some of those small progressions and to see some of those small improvements. That just means so much like potty training and swimming and, and so just a real message of hope that stay locked in and remain hopeful because it will pay off.

Shauna Humphreys: 26:38

Yeah, I had about three questions. But crystal, I think I'm just got one. But I'll go ahead and ask in case, there's something like just specific, you wanted to say about it, but I had the biggest piece of advice for Native families or parents that are newly diagnosed, my

Miranda Carman: 26:55

reaction was different than my husband's reaction. And I imagined that, you know, each parent will have their own reaction to receiving the diagnosis. And so I think, you know, like I said before, that it's this, this is not the end, it is really the beginning of your journey. And to know that the way that it looks right now, is not the way that it will look in, you know, it could be a year, it could be two years, you're going to see progress. And just don't give up, don't get discouraged that you've done the best thing and getting your child the diagnosis, even though it hurts tremendously. To know that your child is going to have some of those challenges in their life. But at the same time, you've opened up a door, have resources that your child now has available to them, and you're doing the best that you can in opening that door.

Shauna Humphreys: 28:13

Thank you. Another question I had is so like, if you could wave a magic wand. And looking at your journey from going in, you have that perspective from travel to federal? What What could that travel network look like to support families with autism?

Crystal Hernandez: 28:36

I have that I have that magic wand. I have that magic wand. Now we talked we talked I mean, we've talked plenty and I know that for me the magic wand, I'll just go and then you can just jump on and do for me the magic wand is is a lot of things. It's number one, the tribes working as a blanket in a network. So if one tribe has some strengths, and has done some great work and move the dial forward, lean in and build together collectively. And really, that's the strength is coming together and learning from one another but also take the systems and the things that you've seen states and government do learn from it and do it do it better. And really help the families through this journey, whatever that resource or that need may be because the gaps are massive. And some places even you know have bigger gaps than others, but it's really there's a lot of pieces to that magic wand question. So let Miranda go.

Miranda Carman: 29:37

Yeah. So you kind of sparked just some thoughts. I think, you know, the the tribal relationship with the federal government is a unique opportunity to tag on to some of the efforts which I know crystal you you've tapped into some of that, but I look at some of the just The conferences that happen and the federal money that's poured out into communities for lots of different things. And I, I think that there's opportunity for us to be in places and to share information that in. So I'm thinking maybe along the lines of like a task force or something that brings us awareness, similar to how they've kind of done a task force for, you know, family violence and domestic violence, I believe there was a task force on missing and murdered indigenous women. And so things like that start to really circulate through Indian country. But I love the idea of creating that network. And so somehow, bringing the individuals that are the champions on the ground together in one place, that we're able to stay connected and to share those experiences those resources, because, you know, we learn from each other, you know, all the time of, you know, well, in this state, maybe it's, you know, a certain way, but, you know, in another state, you would have access to certain things. So, there's just a lot of differences, even from state to state. And so we know that our tribes are in every state, we have tribal members. And so we have all of those different scenarios that families are facing. And so finding a way to bring those champions those families together, and to share those experiences, share those stories, and share what has worked so that, you know, there can be more services provided on the ground and locally and that that, you know, ultimately that more families are hopefully getting services as early as possible.

Crystal Hernandez: 32:21

I have one question I want to talk about and, and we can talk about it together a few if you would, like. You mentioned ABA and controversy, and I am very well aware of the controversy. You know, I've had people write to me and talk about ABA being akin to assimilation for our tribal folks. And, and, of course, then you have, you know, all sorts of other opinions about it both directions. And so I was just curious if you wanted to say anything about that we can tag that through.

Miranda Carman: 32:56

I haven't heard that you probably talked to a lot more people tonight.

Crystal Hernandez: 33:03

Just a few.

Miranda Carman: 33:05

Yeah. So I haven't heard that specifically. That's interesting. That it would be, I guess, compared in that way to assimilation? I look at it. As you know, these kids need specialized services. And, you know, there's not a lot of, of options. You know, there's a few, there's a few, that when you're talking about that are actually research based that have proven results. You know, I mean, anyone can come up with an idea and, you know, say that, okay, yes, this is what you should do, but things that actually produce results. And so that's what I would say is that if, you know, if I'm a parent, I want to know that the time that I'm investing in the money that I'm investing, is going to produce results. And I know, you know, every parent's probably going to look at it a little differently. But I definitely think it's more about this treatment being something that has proven to work because we do not know everything about autism, we do not know. And so not knowing means that you have to go to what's shown to produce results. And yeah, that would that would be what I would say I just I haven't had that question. So I'm going to have to think of that one a little bit.

Crystal Hernandez: 34:51

No worries. And so just for the podcast itself, ABA is applied behavioral analysis in so for me, you No, I always look at it because I hear both sides, you know, sometimes it's appropriate, sometimes it's not. And I think just the the, the wideness of variety in need and strength, and preference, I'm always one that I allow that preference to come in. And you know, if this works for your family and for you, and it's, it's needed, you know, whatever that treatment is, I believe that they should have access to it. And so it's all for me about choice and access and need. And so Absolutely, thank you for sharing that. All right, is there anything Miranda that we have not asked you? Or that you feel

Shauna Humphreys: 35:39

think I just have one last question. And it may take a few minutes for you to think on it too. But you, you mentioned that, you know, moms are kind of leading this this fight. So what would be your plea or kind of your pep talk to someone or to our audience? To get them to join the fight? Like how could How could they help or we help and joining in this fight?

Miranda Carman: 36:06

I think awareness and people taking the time to to learn about autism, if you have someone in your family that you know, you know, has a child, you know, have a conversation. You know, learn what you can be open to it. Don't be afraid of it. It's not, you know, it's something that we need to be afraid of it's, you know, something that I think that people just they really need to be open to gaining more awareness. And so I would just, you know, ask that people are not just sorry, that people are not judgmental, in what they see if they have questions about a behavior that they see. Ask about it. And you know, if you are aware of a child, and maybe someone else is, you know, making a comment, or they're, you know, asking questions about behaviors out in public, and what is that about? Educating if you're aware, those people if you have that opportunity, and what you've learned about autism, because there's definitely a spectrum, but that's something that I've seen just in going out in public. We go to football games, you know, all the time, though. I think it's just, it's important to explain those things to be open. And then for, you know, others on the other side to be willing to to learn and then have an interest in, you know, just really joining us in this effort to bring awareness to these issues, because they're real issues.

Crystal Hernandez: 38:06

Well, thank you, Miranda, for sharing your story. We appreciate it, it and I can speak for myself, and I'm sure Shauna feels the same way. It was wonderful to have you and we definitely appreciate the work that you're doing.

Miranda Carman: 38:21

Well, I appreciate the invitation. I am glad to have joined as well. And I look forward to connecting in, you know, however I can with if it's moms, if it's parents that are just interested if people want to know more, I think they'll have three individuals here that could definitely provide information crystal I know is a wonderful resource and can get you connected to pretty much anything that you need. So I appreciate it, Crystal and everything that you've shared with me. So thank you again,

Crystal Hernandez: 39:03

thank you. Native proverb, we will be known forever by the tracks we leave on others. Native Americans have the highest rate of disability among all other groups. We have compounded traumas, we have been stripped of land, culture and lives. We have continued barriers to care with equitable service. There continues to be a true lack of inclusion in crafting widespread policies, programs, funding and systems. When we know better we do better and everyone deserves to have compassionate understanding and be their most authentic self.

Shauna Humphreys: 39:59

If you are someone you know I was experiencing a mental health crisis called the 988 suicide and crisis lifeline, which provides confidential 24/7 support by dialing 988.

Crystal Hernandez: 40:09

Join us next time for a discussion of developmental disabilities and hear stories from our wonderful guest. So black brothers podcast is a podcast that will occur on a monthly basis. We hope that you will listen subscribe and follow us on social media. Thank you to Cherokee National Treasure Tommy Wildcat for the use of your flute music on this podcast.

Shauna Humphreys: 40:31

I want to thank Lukas Fraser and the boys for letting us use their drumming music. Please subscribe to black feathers podcast. You can find us wherever podcasts are found.

Crystal Hernandez: 40:41

We would love to hear from you and invite you to submit your stories and questions. Until next time.

Shauna Humphreys: 40:46

Thank you for joining us on this month's journey. Remember, none of us walk this Alone Together we are stronger and it is the roots that bind us. Follow us on black feathers.org