NSS Weekly: Becoming Aware of Fetal Alcohol Syndrome Disorders

Transcript

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INTRO: You are listening to North Star Stories: Voices from Where We Live, a weekly newscast about what it means to live in Minnesota, produced by AMPERS, Minnesota's community radio stations.

BRITT AAMODT: For many families, welcoming a child brings joy and hope. It also raises questions about what support that child may need as they grow. This week, we examine fetal alcohol spectrum disorders, or FASD, a silent condition that affects many school-age children in the United States.

VICTOR PALOMINO: Then, we speak with an organization that supports pregnant people navigating substance use. I'm Victor Palomino.

BRITT AAMODT: And I'm Britt Aamodt.

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BRITT AAMODT: But first, North Star Stories reporter Xan Holston with some of the news that made the headlines around the state.

XAN HOLSTON: Bird flu is back in Minnesota poultry farms weeks before cases typically begin in the fall. More than 260,000 birds and 10 different flocks have tested positive since September. State animal health officials say cases usually begin in October as wild birds migrate and encourage flock owners to report any suspicious health issues.

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XAN HOLSTON: The fate of a proposed rock quarry near Rochester's airport is still up in the air after city staff warned council members that quarry expansion could create hazards for airplanes.

ROCHESTER CITY STAFF: Blasting could throw rock into the airspace when planes fly low. Dust from blasting could block pilots' visibility of the runway and safety lights.

XAN HOLSTON: Quarry representatives told the city council blasting would only occur about six times a year and would be coordinated with the airport and weather conditions. But the council voted to consider the proposal again next month.

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XAN HOLSTON: In the south-central part of the state, New Richland is moving into the next phase of flood recovery, with state and federal teams going door to door to document damage.

NEW RICHLAND AUDIO: We are going to be here today, tomorrow, in the days and months, and even if it takes years ahead, to make sure that we can assist you in your recovery efforts.

XAN HOLSTON: Officials from Minnesota and the federal government will visit New Richland and other flooded communities to get a scope of the losses. Officials say water damaged more than 80 percent of homes. State Homeland Security and Emergency Management officials say door-to-door assessments are vital—

STATE HOMELAND SECURITY AND EMERGENCY MANAGEMENT: To determine if we, as a state, are at a point where we can then ask, request the President of the United States for a major disaster declaration for what we call individual assistance.

XAN HOLSTON: An on-site disaster assistance center will open soon to help residents with insurance claims and replacing documents.

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XAN HOLSTON: As New Richland and southern Minnesota's Waseca County seeks volunteers with trucks for flood cleanup and prepares for federal damage assessments, drought disaster designations are expanding through other parts of the state. The latest covers Wilkin in neighboring western counties. Others include St. Louis in the northeast and Pipestone and Rock in the southwest, plus all surrounding neighbors. Eligible farmers can apply for emergency loans. Approval is based upon losses and ability to repay.

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XAN HOLSTON: A deadly and highly contagious rabbit virus has surfaced in two domestic colonies in Lake of the Woods County, in Minnesota's northwest corner. One farm or colony lost about half its rabbits. A nearby colony lost about 15 percent. Both are under 90-day quarantine. The Department of Natural Resources says the virus typically spreads among wild rabbits in states west of Minnesota and asks people in the western parts of the state to report any dead wild rabbits.

DEPARTMENT OF NATURAL RESOURCES: If you notice in your area large quantities of wild rabbits that are either dead or in the process of dying, give the DNR a call, send them an email, check out their website, report it.

XAN HOLSTON: The virus does not infect people but always make sure to cook rabbit meat thoroughly.

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XAN HOLSTON: The Detroit Lake School Board is rewriting its policy banning rainbow symbols as two families sue to end it. The Northwest Minnesota School Board voted four to two in July to remove signage and symbols the district had not approved, specifically naming rainbow stickers, flags, and buttons. The families in the ACLU say the rule violates free speech, equal protection, and civil rights law because it only targets LGBTQ symbols. Board members gave the revised policy its first reading. This version no longer singles out rainbows but still names flags, stickers, and buttons. The new policy also includes language that bans displays of personal, religious, or ideological views unrelated to school programs or instruction. Parent Amber Estenson, whose child is a part of the lawsuit, disputed the motivation behind the policy.

AMBER ESTENSON: Before this ban, there was no crisis, and there was no incident demanding this policy, and there was no Brownsville parents asking for it.

XAN HOLSTON: The board says it was advised to change policy language but didn't clarify why the lawsuit is pending.

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XAN HOLSTON: And finally, along the Wisconsin border, on the shores of the St. Croix, land used for science and art will remain protected. The Science Museum of Minnesota has completed conservation easements on another 130 acres at its watershed research station near Marine on Saint Croix near Stillwater. The land includes woodland and old-growth riverfront forest. The agreement brings the station's total protected land to more than 300 acres. For North Star Stories, I'm Xan Holston.

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BRITT AAMODT: Fetal alcohol spectrum disorder, or FASD, is a range of lifelong developmental conditions that may affect as many as 1 in 20 school-age children in the United States.
Last month, Minnesota landmarks and public buildings, including the Mayo Clinic campuses, were lit red to raise awareness of FASD.

VICTOR PALOMINO: I spoke with a person living with FASD and an organization working to increase understanding and support. Here's the story.

OLIVIA: So I was actually diagnosed way later than most kids are. So I wasn't diagnosed until I was 13, and so up until then, I was, I went to many doctors for, of course, ADHD, ADD. I think at one point bipolar, which is a lot of kids with FAS tend to get diagnosed with bipolar first before they're actually diagnosed.

VICTOR PALOMINO: That's Olivia, who is living with FASD, and she recently graduated from St. Cloud State University with an accounting major. FASD is a brain-based disability caused by prenatal alcohol exposure and is the leading cause of birth defects and neurodevelopmental disorders in the United States. It's lifelong. There's no cure but with early diagnosis and support, people can thrive throughout their lives.

OLIVIA: And so it wasn't until I was 13 I finally got the services I needed. Until then, it was a little rough and then I guess all throughout high school, I guess blossomed to who I am today, if that makes sense.

VICTOR PALOMINO: Olivia described herself as being in the high end of the spectrum but is conscious that every story is different.

OLIVIA: And I just think a lot of people, especially educators, just don't understand that not everyone with an FAS is the same. They are their own person. They may have their own struggles, but they also have their own strengths.

MOLLY O'BRIEN: We see misdiagnosis a lot, right? It's ADHD, it's autism. The thing is, these things can co-occur, and there's similarities. So coming in for a diagnostic process, a diagnostic appointment is really important if you're starting to notice your child having learning differences when they enter that kind of school age.

VICTOR PALOMINO: Molly O'Brien is the executive director of PROOF Alliance, a Minnesota-based organization focused on providing prevention, diagnosis, and social and recreational programs for children, youth, and adults who have FASD or suspected FASD in their families.

MOLLY O'BRIEN: It used to be fetal alcohol syndrome; now it's fetal alcohol spectrum disorders. So executive functioning is often one of the key things that that kind of shows up, right? So memory, learning challenges, maybe trouble understanding cause and effect challenges, planning, but there can also be things like sensitivity to sound, touch, smell, issues with eyesight, right? So it affects the whole child and affects every child differently.

VICTOR PALOMINO: Molly explains that public health guidance is clear. There's no safe time to drink during pregnancy, and no safe kind or amount of alcohol to consume during pregnancy.

MOLLY O'BRIEN: Nobody wants to harm a child. Everybody wants healthy babies and healthy communities, but sometimes someone might not know that they're pregnant for months, and it's not just when someone's pregnant; it's when someone's trying.

VICTOR PALOMINO: Another barrier for FASD prevention is that some families may avoid discussing prenatal alcohol exposure or seek help for fear of judgment on their parenting or family history.

MOLLY O'BRIEN: Well, stigma is one of the, one of the challenges, and that misinformation is one of the challenges. People just don't know about it, so we really want to get the word out and raise awareness about the importance of alcohol-free pregnancies.

VICTOR PALOMINO: Early diagnosis and awareness campaigns are not only a benefit for the child and the family. Molly say that they're also an investment in the community.

MOLLY O'BRIEN: Because what we see is that with that early intervention resources and supports, we see graduation rates improving. We see jobs improving. We see lower interaction with law enforcement and the justice system. We see lower healthcare utilization, and on and on. These programs make a difference and help people live well with FASD.

VICTOR PALOMINO: For Olivia, the diagnosis offered the opportunity to understand the root of some of her behavior and find resources and help she needed an opportunity that opened a bright new chapter for the rest of her life.

OLIVIA: FAS doesn't define someone. I know a lot of FAS friends and people that are doing such amazing things, and most of the time, you cannot tell that someone has FAS, which is why they call it the invisible disability. But with that being said, I will say everyone with FAS again is different, and you just never know what someone may need or what someone may struggle with. So, just taking the time to learn and understand more, I think, will be key into understanding FAS and just whatever individual that you're trying to kind of connect with an FAS for sure.

VICTOR PALOMINO: To learn more about FASD, visit the PROOF Alliance website. For North Star Stories, I'm Victor Palomino.

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VICTOR PALOMINO: Coming up, how to build awareness and support for Fetal alcohol spectrum disorder and how one organization is helping families experiencing substance use.

BRITT AAMODT: This is North Star Stories: Voices from Where We Live, produced by AMPERS, Minnesota's Community Radio Stations, with support from the State of Minnesota. We'll be right back.

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BRITT AAMODT: You are listening to North Star Stories. I'm Britt Aamodt.

VICTOR PALOMINO: And I'm Victor Palomino. We continue the conversation on fetal alcohol spectrum disorders with Dr. Jeffrey Wozniak, a pediatric neuropsychologist and child and adolescent psychologist who treats patients with fetal alcohol spectrum disorders. Dr. Wozniak sees patients in Minneapolis. Welcome to North Star Stories.

DR JEFFREY WOZNIAK: Thank you. It's great to be here.

VICTOR PALOMINO: So FASD affects one in every 20 children of school age, but we still don't hear much about it. Why do you think that the syndrome is still so unrecognized?

DR JEFFREY WOZNIAK: The first reason is that there's a stigma around talking about alcohol use during pregnancy. It's for many people an uncomfortable topic, and so I think it's simply avoided. Another part of the equation I think has to do with just how alcohol is used in our culture. It's fairly ubiquitous, and people just consider it a part of the background, part of how we live and entertain and socialize, and so it's kind of fades into the background. People don't really think about alcohol use as a health-related issue, for example.

VICTOR PALOMINO: In our story, we point out that the for the diagnosis, it could be difficult to do because it could be confused with HDHD, could be confused with autism, with other syndromes, so how is the diagnosis, and why is it so complicated?

DR JEFFREY WOZNIAK: There is a lot of overlap between various developmental conditions, and this is the case even outside of fetal alcohol spectrum disorders. So there can be common symptoms for conditions like ADHD and autism and FASD. What we try to do in order to specify a case of FASD is to learn as much as we can about the history and the alcohol exposure itself. Sometimes that's coming from a first-hand source, a parent. Sometimes it's coming secondhand, and so that information can be a little less clear, a little bit less reliable. We try to establish that we measure some growth characteristics in the child because prenatal alcohol affects the growth of the body and the brain. When we're trying to measure the brain, typically the easiest way to do that is to measure the head itself, and there are growth charts for these things, just like there are for height and weight, and then there are some very specific facial characteristics that we look for in the eyes and in the mid face, and especially in the mouth, because prenatal alcohol exposure can affect the craniofacial development as it is affecting the brain. So that's kind of a proxy measure for what may have happened in the brain, and then finally we look at cognitive functioning and behavior, and we look for some characteristic patterning in the child's skills and strengths and weaknesses, especially as related to things like memory and attention and emotion regulation ability.

VICTOR PALOMINO: And when the children are diagnosed what do you wish that parents understand responding to, like having this this news and then going forward?

DR JEFFREY WOZNIAK: Yeah, I think we try to at the at the front end when a diagnosis is made, we try to provide hope because this is a fairly can be a fairly devastating piece of news because FASDs are permanent and they affect the way that the person's life is going to unfold as far as their brain function and some aspects the rest of the body functioning. So that's one element that's important to inject right from the beginning is that there is still hope that the child is going to benefit from interventions along the way. Those might be in the school. They might be therapeutic interventions outside of the school. At the same time, we also want to impart some knowledge about what is an FASD, how does it look in the child at different ages, and what kinds of interventions can actually be helpful in optimizing their development. And that's kind of the way that we think about it: is development is still a moving target, really well into the 20s, and really in some ways throughout life, we're constantly developing. But especially through childhood and adolescence and into the early 20s, there's a lot of development happening. The brain is still changing dramatically, so there are opportunities there for optimizing all of that time that's left in development, even though there may have been an insult prenatally.

VICTOR PALOMINO: I'm still curious what would be a good way to bring more awareness to this? Like you said alcohol is something that, in many parts of our culture, goes hand to hand with socializing, with creating community, and so, without banning completely alcohol, how we can think about this in a way that is something that exists and is something that affects our children, our communities?

DR JEFFREY WOZNIAK: I think that's a very good question, and I think most of us who work in the field of fetal alcohol spectrum disorders are not anti-alcohol. You know, many of us do consume alcohol socially as well. We're just very concerned about alcohol use during this narrow window of time when a person is pregnant. So I think there's a couple of parts to the answer to this question. One element is increasing awareness of fertility and pregnancy. We know that many individuals don't know that they are pregnant until at least one to two months into the pregnancy, and that early window is a dangerous opportunity for alcohol exposure when someone doesn't know they're pregnant. So that's part one is I think education and increased awareness around fertility and early pregnancy is important. Two, I think thinking about pregnancy as something that one prepares for by setting the stage with a variety of health behaviors is really critical, and that part that needs to be kind of part of our culture to kind of think about pregnancy as something that one prepares for, as opposed to something that just happens to us. Three, I think you know conversations specifically with clinicians, you know, pediatricians, OB/GYNs, family practice doctors about alcohol specifically are starting to come into the fold, and you may have had this experience when you go see your physician. They ask you a whole range of questions about safety and seatbelt use and tobacco use and now alcohol use. So I think it is becoming more part of the general conversation around health, and those are really critical opportunities for you know touch points where a clinician can step in and say, "Did you know that alcohol you know can have really negative effects on pregnancy? Are you thinking about becoming pregnant? Is your significant other thinking about becoming pregnant?" Start having these conversations about within the family about alcohol use and the possibility of a pregnancy.

VICTOR PALOMINO: Well, Jeff, thank you so much for your time.

DR JEFFREY WOZNIAK: Glad to be part of the conversation.

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VICTOR PALOMINO: According to the Minnesota Department of Health, substance use is a common and serious disorder, but one that can also be prevented and treated.

BRITT AAMODT: In Ramsey County, Mothers First helps families practice sober pregnancy and assists women and birthing people who struggle with substance use. To learn more about this issue and the organization's work, we are joined now by Tracy Jones, the supervisor for Mothers First. Thank you for joining us.

TRACY JONES: Thanks for having me.

BRITT AAMODT: Well, let's start by having you just telling us a little bit of the backstory on Mothers First.

TRACY JONES: Mothers First has actually been around since 1988. It was grant funded by DHS to address the babies that were being born addicted to crack cocaine. So the program it's a women's recovery grant that works with pregnant and/or parenting moms who are currently using or have a history of substance use.

BRITT AAMODT: On the Mothers First site, it says that the program focuses on meeting participants where they are and supporting them as they define their own success. So, what does that mean, where they're at and defining their own success?

TRACY JONES: Parenting and being a person who is using substances are two hard roads to go with at the same time. So, we ask a lot of questions up front to see what's important to them. What are they currently working on? What do they fear? What successes and strengths do they already have as individuals or as a family? And then we also collaborate with any other professionals that they work with. So in the event of say maybe we don't hear from a family for a week or so, and we're concerned, then we have the ability to reach out to those other professionals because maybe they know something that we don't know, we do understand that our families are going through a lot individually and as a society as a whole. We know that there are a lack of resources in the community for some of these families, and so we just we try to gather as much information as we can and what we already know about families that we've worked with or ones that we see in the community.

BRITT AAMODT: What do you do to support these women and these families?

TRACY JONES: Once they are in case management with us, we do what they call like a safe sleep study. So our public health nurse will go out with the social worker or on her own and just talk about safe sleep with the parents. They will observe where the child sleeps and if there's a bunch of teddy bears or something in the bed, she talks to them about the importance of not having those kind of things in the bed and will actually like help them get the bed to where it needs to be for the kids. We also have a peer recovery specialist on the team as well, and that is a person who has the lived experience, and we actually just lost our peer, but she had the life experience of the substance use and of being incarcerated, and our families could relate to her. And there were a lot of things that they would tell her before they would tell their social workers. So she was kind of like their cheerleader and would help them find supports in the community, whether that's an AA group or a parenting group or a mom's group or something like that.

BRITT AAMODT: You know, especially with substance abuse, it seems like it's a lifelong journey. So they're in your program for a certain amount of time. I imagine you have partners to help them further down the road.

TRACY JONES: Yes, we do. Some of the families, I wish that that support could literally be forever for them. We see a lot of growth with our families from the time they come into the program to the time they are graduated from the program, or decide that they don't need the support anymore, and we try to set them up while they're with us so that those life skills are sustained when we close out their file. They're given a community resource list. They're given reminders of places that they've already accessed other services from, and we also give them like a crisis number as well. With our program, our data is collected by Wilder. Wilder also does a one-month interview with them to see how they're doing, if there are any things that they need, and if they identify "I need diapers" or "I need stroller" or something like that, they will then let us know that that participant is a month out and is needing these things. Then we will contact them and see what we can do. Whether it's something that we can directly do ourselves, or we find a community resource to help them with that. The Wilder interviews are at one month after, six months after, and a year after. So we get all that data at the end of our reporting period to kind of see the numbers and see how things are going.

BRITT AAMODT: Well, what does that data tell you? Like, how do you, as Mothers First define success? What is success for you?

TRACY JONES: Success for us is a mom who is willing to accept all the suggestions and support that she can get to get to that point where she is comfortable parenting. She is sober, and in the event that she chooses to continue her substance use, we make sure that there's a safety plan, a relapse prevention plan in place. Success looks different for all of our families depending on where they're coming from. A lot of people assume that our moms are young moms, and our average age is probably 28 right now, and some of those women also have like adult children or other children that they are not parenting at the time. So Mothers First kind of gives those moms the opportunity to show Child Protection, "because my kids, my other kids were removed," or "because I did the voluntary placement, that I am at a point in my life now where I can parent." So we have seen some success where Child Protection doesn't come in right away and remove a child if they know they're working with us. We kind of work together and see what would be the best plan for the family, and what is gonna be okay with the courts, and how we do that.

BRITT AAMODT: So how can the community support mothers first, or these mothers, these families?

TRACY JONES: I would say if you know a mom that could use the services, and she's residing in Ramsey County, give her our information. All of our events, community events, are posted on the Ramsey County website on their Facebook page. All that good stuff. We host the community baby shower every year, and usually over 300 people attend, and over 30 community organizations table at the event, free food and raffles. So that's always a hit. And then we kind of manage the holiday sponsorship program that Ramsey County Social Services has. So it is going to be the information is going to be coming out soon to sponsor individuals for the holiday.

BRITT AAMODT: That's great to know. I'm glad you have those sponsorships. Well, thank you so much, Tracy, for all your information and for your time and for all the work you do.

TRACY JONES: Thank you. Thank you.

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VICTOR PALOMINO: This is it for today's program. If you missed any part of today's newscast, you can find this and past episodes at AMPERS.org or listen wherever you get your podcasts. You can also get North Star Stories Daily on our website or check your favorite station's schedule.

BRITT AAMODT: Thanks for listening, and we'll be back next week with more stories and voices from the North Star State.

OUTRO: North Star Stories is produced by AMPERS, Minnesota's community radio stations with support from the state of Minnesota. Online at AMPERS.org.