GAR 96 | FASD

 

Natalie Vecchione is the 9th inspiring interview in our Grief and Rebirth Podcast’s Rebirth series. She is the co-founder of FASD Hope, whose mission is to provide awareness, information, and inspiration for people whose lives have been touched by FASD. She is also the producer and host of the FASD Hope! podcast series, an FASD parent advocate, a special-needs homeschool parent mentor and a peer support mentor. FASD (Fetal Alcohol Spectrum Disorder) describes the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. Natalie’s story is a true-life story of triumphing over daunting obstacles and finding rebirth, which includes reinventing her career into a calling to help those parents, families and loved ones whose lives have been touched by FASD.

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Natalie Vecchione: A True-Life Story Of Triumphing Over Daunting Obstacles And Finding Rebirth By Reinventing Her Career To Help Those Whose Lives Have Been Touched By FASD (Fetal Alcohol Spectrum Disorder)

 

 

 

 

 

I’m delighted to welcome Natalie Vecchione to our show. The acronym FASD stands for Fetal Alcohol Spectrum Disorder, which describes the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

Natalie is the Cofounder of FASD Hope, whose mission is to provide awareness, information, and inspiration for people whose lives have been touched by FASD. She is also the Producer and Host of the FASD Hope Podcast series, an FASD parent advocate, a special needs homeschool parent mentor, and a peer support mentor. It has been estimated that 1 in 20 children in the United States have an FASD. It is the most common developmental disability in the Western world. No amount of alcohol is safe during pregnancy. FASD is the most misdiagnosed, undiagnosed, and underdiagnosed of all developmental disabilities.

Natalie, who will be speaking to us from Royal, North Carolina, is the co-author of the book, Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities. Her story is a true-life story of triumphing over daunting obstacles and finding rebirth, which includes reinventing her career into a calling to help those parents, families, and loved ones whose lives have been touched by FASD. Natalie, it is such a pleasure to welcome you to the show. I could go with too many compliments, but you are amazing.

Thank you so much for having me. Can I take you wherever I go?

You are not the first person who said that to me. Sometimes I like people to know who I’m interviewing. Before we start to yak, you have accomplished and been through so much.

It is part of this journey that I was meant to be on.

How about telling us about your background, how you met your husband John, and why you chose to grow your family through domestic adoption?

My husband and I met several years ago. We met at East Carolina University here in North Carolina. Even though we lived up and down the East Coast, we ended up finally coming back to North Carolina. When we met, we were friends. We were in a jazz band together.

What did you play? I have to ask that.

I’m a flutist, and my husband is a bassist.

I grew up playing the violin.

I have a soft spot for string players. More reasons why I like you. He walked me to my car one evening after practice. We became friends. We realized that we both had a lot in common, and we started dating. A month before we started dating, I had my first laparoscopy. I had symptoms of endometriosis beginning when I was sixteen. I had severe symptoms.

When I was in high school, I would go to the ER because I was either hemorrhaging or having pain that nobody could explain. I have a familial history of endometriosis on my mother’s side of the family. When I was in high school, she would mention to the doctors, “We have a familial history. Could it be endometriosis? We were dismissed.” They were like, “No, she is too young. She is only sixteen.”

My endometriosis progressed and became increasingly worse. A month before my husband and I started dating, I had a laparoscopy in North Carolina. It was by a wonderful endometriosis specialist in Raleigh. She was going in to do exploratory surgery. She was the first surgeon out of about five I had seen who said, “I think you do have it. Let’s do a laparoscopy.”

You were in pain all the time.

I was in such debilitating pain. I’m sure you have talked with people about living with chronic pain and chronic illness. It chips away at you physically but also your soul. I went into this surgery and the doctor said, “I only expect it to be a little bit. We are going to go in and see what is in there.” I woke up hours later, and she was in there for four hours cleaning up. She told me she patted my arm, and the first thing she said was, “I am so sorry nobody believed you. I have never seen a case this bad in someone this young in my years of practice.” She cried. I knew, “Here we go.”

She cleaned me out with the laparoscopy and she told me, “There are good chances.” This was several years ago. We know the progress of fertility and surgery. The surgeon said, “There is a good chance you are not going to be able to conceive. If you do, there is a good chance you are not going to be able to carry full term, because that is how bad your endometriosis is.” I took that, and I was like, “Okay.”

It wasn’t a hysterectomy.

I ended up having a hysterectomy, but not until a few years later. This was before my husband and I started dating. He was friends with me. He took notes in classes while I was missing class for my surgery. I will never forget his line. He said, “We are great friends. You and I seem to date the wrong people. What if we started dating each other?” My line, which he always teases me was, “What if I lose you as a friend?” His line was, “You won’t.” If you are reading, I’m sorry. I had to share this story.

We started dating. That was April of 1992. Several years later, we are married. We have two amazing kids. He knew going into it. When we started dating, I told him what the surgeon told me. This is how I knew that he was meant to be my man. I said, “There is a good chance I’m not going to be able to get pregnant, and there is even a better chance that if I do get pregnant, I won’t be able to carry a child for the full term.” He said, “I love you because you are Natalie, not because you can get pregnant. If you can’t get pregnant, we will adopt.” That is when I said, “God, thank you for sending me my soulmate.” We married three years later. When we were in grad school, we moved to Miami, Florida. We went to grad school in Miami.

I went to the University of Miami.

Another reason why I like you. We are Canes proud. Shortly after we married, that is when we started trying to conceive. That is when we saw a fertility specialist. This was in the early ‘90s. Much has changed since then. The first surgeon we saw said, “We got to try.” I started on fertility drugs. At the time, nobody told me that the stuff I was taking would make me sicker with each attempt. This is back in 1995 when insurance never covered all these. We were going into debt trying to get pregnant because the doctors were saying, “Now is the time. You have to get pregnant now.”

We wouldn’t even make it sometimes to a full attempt. Sometimes we only make it to part of the medication, and my body would shut down. With each attempt, I would get sicker. I didn’t even make it to that stage. I’m starting the medication. I had a cyst and I lost one of my ovaries again. I’m in my early mid-twenties. The surgeon I was with said, “Let’s try this.” My husband said, “Let’s try another surgeon.” At that point, we were almost done with graduate school. We found what we thought was the best in vitro specialist in Miami, who was wonderful. He was fantastic.

This was our last attempt. I had one ovary left. I couldn’t blow it. It was right after I finished graduate school. My husband had finished graduate school. We were working. Most young couples that age are not thinking this intensely, “We have to have a family now because your body won’t let you if you wait.” This is part of my broken story, which we will talk about the rebirth. This is me being broken physically and emotionally.

Here, you were like a mess.

Many of my friends said, “My husband, my spouse, or my boyfriend would never have stayed with me throughout all that.” I was like, “I’m blessed. Not once did he ever even think about leaving.” Our last attempt was in 1998, three years after we first started trying. A wonderful surgeon and honest said, “This is what we are going to do. This is the plan.” We started the medication. My numbers were looking good and my blood account was.

The night before I was supposed to have my eggs extracted, I got a phone call from the surgeon. I was sitting in the kitchen and I remember it as clearly as we were talking. My surgeon said, “I’m sorry.” I said, “What? We haven’t even done anything yet, doctor.” He said, “Your numbers went from perfect to nothing. I’m worried that this ovary has also been infiltrated by endometriosis. We can’t go on.”

That was the beginning of the different. We grieved. We knew we couldn’t do this anymore. My husband took a job in Philadelphia. We moved to Philly. I was still sick and had no quality of life. I saw another surgeon. I told him, “If there is no chance of me getting pregnant, I need a hysterectomy.” It was the late ‘90s. Much has changed since then.

I want to ask you. Could you define for everybody what endometriosis is for people who don’t know?

Endometriosis is when the lining in your uterus goes outside the uterus and invades different areas of your body. Women usually discover it when they are trying to conceive because it is one of the leading causes of infertility. It also happens in women who are younger. They are learning more about it. There is a lot of research done about it. It is familial. It runs in families. It is also autoimmune. It is your body attacking itself. Similar to cancer, it feeds off of hormones and blood supply. What I was doing those years trying to conceive was making myself sicker because I was feeding my body hormones. My body is shutting down because my endometriosis was severe.

GAR 96 | FASD

FASD: Endometriosis is when the lining in your uterus goes outside the uterus and invades different areas of your body. Women usually discover it when they are trying to conceive because it is one of the leading causes of infertility.

 

Finally, this wonderful surgeon in Philly was a fertility specialist, but he also specialized in endometriosis and reproductive endocrinology. This was before he retired. He said, “A hysterectomy would be a quality of life improvement for you.” In September of 1999, I had a total abdominal hysterectomy. I was 28 years old. That was physically broken. I had to walk again because that is how bad it was.

My surgeon had another surgeon in there, my GI surgeon, whom I had seen for a lot of symptoms. They were both in there. They both said, “If we had waited six more months, you would have had to have your bowel resection. That is how bad you are.” With endometriosis, not only is the active endometriosis part of the disease, but when you have the excisions, when you have it removed through laparoscopy, it leaves behind adhesions. We all know adhesions are internal scarring. My adhesions were as bad as the active endometriosis. In some parts of my body, especially my bladder and my lower GI was worse. The adhesions were worse.

They spent about six hours cleaning me out. I remember going to the only room they had left in the hospital. It was Thomas Jefferson University Hospital in Philadelphia, the only room that they had left because it happened to be that we were having a tropical storm or some craziness happening. It was in the women’s cancer unit. I was the youngest patient on the unit. I was the only patient who was not there for cancer.

My mother, who is an RN, had permission to stay with me in my room. She is a tough nurse. She had me walking the next day because she knew that was what I needed to start recovering. She had me walking for two reasons, first of all, for me and to help my recovery so I wouldn’t have to stay in the hospital longer than I had to. Secondly, she knew I was in the women’s cancer unit. She knew that almost every patient on that unit was there for cancer surgery. She wanted me to walk around the unit so those women could see me walk so that they could start walking. Part of my rebirth, I did not know that the brokenness inside me was part of my physical and emotional rebirth.

The brokenness inside us is part of our physical and emotional rebirth. Click To Tweet

I thought you were going to say that your mom wanted you out of there because she thought it would be depressing for you to be around these women. Instead, she wanted you there to help them.

Afterward, when I took a nap, she was dragging my IV pole hunched over because I had abdominal. I’m gutted it out. She said she noticed a few patients slowly walking around with their IV poles. There was even music playing. I remember the music and everything about that moment. That was one of those moments I was like, “This is what I was meant to do and what was meant to happen.” Even though I didn’t understand at the time, I was grieving so much at the time. Whether it be internally or a limb, when you lose a part of your physical self, there is so much grief involved in it.

My husband stood by me and knew that this was the journey that God had us on. We gave ourselves some time before we started the adoption process. We started the adoption process in 2000. For those of you who have adopted or are familiar with adoption, it is a long, arduous journey. There is a lot of paperwork, visits, and a whole bunch of stuff.

Did you go through an agency or a church?

We went through an agency. Here is another rebirth component of our story. We originally started with a religious nonprofit agency, and September 11th happened. We were on the waiting list with all these other families. The update was, “You need to start finding other agencies because we are not having any placements.”

From what I know now, as a parent advocate and as an advocate for adoption, that is a good thing when there are less placements because that means that more birth moms are making plans and getting support for their children, which is a good thing. Looking back at it with the lens I have now, I know that that is a good thing because many of those birth moms made them reconsider. It made them say, “I’m going to raise my child.” Fast forward to 2002, there is no placement. We went with another agency.

Everything you did was a little problematic. It was a hill or a mountain to climb.

It was an obstacle and hurdle. It was like, “Here is this hurdle.” With hurdles, we have to keep on going. I’m not into sports. I’m more into music and podcasting. When you watch somebody running hurdles, there is a time when it is flat. That is where you get your breath and strength and then you get ready for that next hurdle. That’s what that time in between was. We were getting our breath and getting ready for the next hurdle.

With hurdles, we have to keep going. There are times when it’s going to be flat, and that is when you get your breath and strength and get ready for that next hurdle. Click To Tweet

We received a phone call that there was an agency looking for married couples. We were like, “That’s us.” We applied quickly. We applied on my husband’s birthday. I will save the plot twist for a second. My husband’s begrudgingly filling out all this paperwork again on his birthday, but he did it. I love him because of many reasons, but he did it.

Several weeks later, little did we know that night on my husband’s birthday, when we were filling out our paperwork for this new agency, our son was being born two and a half hours away from us. Our son was born on my husband’s birthday. If that is not a sign from God saying, “This is your child.” That was one of the first things a social worker told us.

Our son was considered a special medical needs birth, which we later found out was all related to his FASD and his exposure when he was in his birth mother’s womb. Several later, we get the phone call, “A birth mom has picked you up. We have a child for you. I start crying because this is a call I have been waiting for years. I fell on my knees and thank God. The first thing she says is, “He was a special medical need.” I’m writing everything down fastidiously.

This doesn’t turn you off or scare you. That is a medical need. You don’t go, “What am I getting into?”

No, because as a music therapist, prior to my reinvention, I worked a lot with kids with special needs and medical needs. I knew these kids have many gifts inside of them that the world discounts, but if you are blessed enough, you get to see those gifts. No, I kept writing. The seal on the deal was, she said, “He was born on this date.” It was my husband’s birthday. I said, “When do we pick him up?”

He had a lot of specialists. This ties into the FASD story. Our son had a lot of medical issues. We were living in Philly at the time. We went to some different hospitals in Philly. We did not get a verbal suspicion that our son had been exposed to alcohol until he was two years old. We started seeing a lot of developmental symptoms.

When I talk about FASD, I will talk about that. That is when we first had a verbal confirmation from a pediatric neurologist in a different hospital that we had usually taken our son to. He didn’t even tell us this. Everything is full circle because I remember being dismissed as a patient saying, “No, this isn’t endometriosis. You can’t have endometriosis.” We were being dismissed as parents. They said, “This is fetal alcohol effects.” This doctor is telling the medical students, but he is not telling us.

My husband and I were gobsmacked. We had no idea. This is the first time we are hearing fetal alcohol. We said, “What do we do?” I share this in my book. The doctor says, “Put him in early intervention. He will be fine.” Early intervention is key, but it is a lifelong developmental disability. There is no such thing as he will be fine. He will have an improvement in some symptoms, but he will have other symptoms as he gets older.

From that time until our son was fifteen, every time something came up, whether it be education, medical, psychological, developmental, or anytime something came up, and we brought up, a doctor told us that he believed our son had been prenatally exposed to alcohol, could this be it? We were always given a misguided, “No, I don’t think that is it again.” My son and my journey have many parallels in that being dismissed.

That is part of brokenness. When the world dismisses you and says, “No, this can’t be.” You know deep down inside that, “No, this is what it is.” Honestly, it was harder as a mom than it was as a patient. I would take it as a patient any day of the week versus being a mom and hearing that. That is part one of our journey.

When the world dismisses you and says, 'No, this can't be,' you know deep down inside that, 'No, this is what it is.' Click To Tweet

As you are finding out, and now he was fifteen, you had decided to homeschool him.

Several years prior, we decided to homeschool.

He wasn’t doing well in public school.

We tried public, private, hybrid, and a whole bunch of different options. As he was getting older, because he didn’t have the proper FASD diagnosis, he was getting diagnoses that were somewhat accurate but not completely accurate.

It must have been terrible for his sense of self.

That is one of the many reasons I became a parent advocate because many of our kids/teens/individuals/young adults/adults have secondary characteristics. Things like anxiety, depression, and things like that, because they are constantly being told, “You need to try harder. You need to do this.” It is a physical brain-based whole-body disability that is causing those symptoms. People think they are willful behaviors. No, they are physical symptoms. He wasn’t officially diagnosed until he was fifteen when he was hospitalized. Let’s share our story because I love my son so much. He does not want other kids to go through what we went through, which is many years of trying to get an answer.

There is another thing that I’m getting, and correct me if I’m wrong, but I’m getting that part of his journey is probably going to be to help other kids who have those problems and inspire them because of his exposure with you and how you have handled things. This could lead to a wonderful sole purpose for him.

I think it will someday. He is enjoyed not living at home with his mom and dad. He is enjoying living with his two best friends, who support him. He is enjoying working part-time in an environment that is supportive. He is working for a home improvement store. He is enjoying the fact that he is done with homeschooling. He was a carpentry apprentice for a few years. I talk about that in our book because that is part of our rebirth. He was learning the gift inside of him. That was part of his rebirth.

As he develops, I’m thinking about further down the line.

I told him what we were writing and he was okay with it. Part of his sharing is him saying, “Mom, you can share what we went through.” Someday he may become a self-advocate. I’m not thinking that far ahead. I’m thinking, “He is living in an apartment with the two best friends, and the apartment is not on fire. That is good. That is a win.”

Tell me about homeschooling and how that works because you put him in homeschooling and your daughter is also homeschooling.

We have two different adoption journeys with our kids. Our son is done with homeschooling. We homeschooled him. We started several years ago when he was in late elementary. We did it as an accommodation. I will use that word several times during our conversation. An accommodation is where you meet somebody where they are, whether it be physically, emotionally, psychologically, or developmentally.

He needed that accommodation because he did much better learning in a one-on-one self-paced environment, which I could give him through homeschooling. While we were homeschooling, my daughter’s birth mother, whom I have a close relationship with, we had an open adoption with her. Our daughter came on our twentieth wedding anniversary. You could picture two opposites.

Our daughter’s birth mom reached out to us and said, “I’m pregnant. My mom said you wanted to adopt another child. Would you adopt my baby?” I’m on the floor, crying and thanking God. Our daughter was born in June of 2015. That is when our son’s symptoms were progressively getting worse. That was before we moved back to North Carolina.

We started homeschooling as an accommodation. Homeschooling looks different for many different families. We homeschool our daughter for different reasons. We live in the middle of rural North Carolina. We have a pig farm on one end and a horse farm on the other. We live in a very rural area. Our daughter thrives in homeschooling.

We homeschool her for different reasons. She learns differently. It is not for the same reasons we homeschooled our son. She thrives. She amazes me. I’m thankful. Part of my rebirth story is I get to do this all again. I’m much older. I joke with my daughter. I’m like, “You got the older version of Mommy. Your brother got the younger version of Mommy.” We joke about that, but it is such an amazing experience to do it again and have that insight to say, “This is what I learned. Don’t pressure her. She is going to read when she is going to read. She is going to do this when she is going to do this.” Having that insight of lived experience helps your rebirth.

Having that insight from lived experience helps your rebirth. Click To Tweet

I have to ask you. Does she have a relationship with her mother?

Yes. We were there for her birth. My husband is in touch with her birth father. I consider her birth mom to be part of our family. She is an extended part of our family. She was our son’s babysitter when we lived in Philly. She was one of my flute students. I love her dearly. My daughter’s middle name is her name. We see her a couple of times a year. We text regularly, a few times a week. We send pictures.

She wants to put together a workbook for birth moms. She is an adoptee herself. She is on both ends of the spectrum. We have a special relationship with her. I’m thankful and blessed. We have two different journeys. I can say it is a challenge because as our son’s symptoms grew worse, we didn’t know anything about his birth family’s history. With my daughter, we know everything. It is a balance. I’m walking this line of I need to be sensitive to my son’s feelings and journey. At the same time, I’m part of my daughter’s triad. I learn every day.

Homeschooling is not what you think it is. Since the pandemic, a lot of people think homeschooling is schooling at home. That could be further from the case. When you homeschool, you take charge of your child’s education. I started homeschooling in New York, which was one of the most heavily regulated homeschooling states in the country. I did things like individualized homeschool plans. We did testing.

We moved to North Carolina, which is a more moderately homeschooled state. As the parent, you have the ability to say, “This is the curriculum.” We have responsibilities, which I follow. I can give resources if you have any readers interested in homeschooling. They can certainly contact me. You go at your child’s pace. For example, my daughter is a whiz at Math and Science for six and a half, but I know that for something like reading, we need to spend a little more time with that. That is okay.

That is what I loved about homeschooling and when we were homeschooling our son. We could support him like we are supporting our daughter where the need is. We can also let them fly and take off where those gifts were. For our son, it was things like carpentry and computer coding. For our daughter, it is things like singing, art, Science, and Math.

Part of your rebirth journey lets you become the Cofounder and Host of FASD Hope, which is a podcast and also a website. It provides awareness and information for people whose lives have been touched by FASD, and you wrote this book. Tell us about all of that. You co-authored it with another lovely lady.

GAR 96 | FASD

Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities

Cindy LaJoy is my co-author. She is my friend. I consider her to be part of my tribe. She is an adoptive mom of 5 kids, 3 of whom have a diagnosed FASD. Her journey is much different. We created this apprenticeship experience for our son, one-on-one. She and her husband from the studs on out created a restaurant called Buckaroos Slices & Scoops, where they created this wonderful pizza and ice cream restaurant in Montrose, Colorado, for her kids. They have a meaningful business place to work. They intentionally hire people who have different abilities.

She did her new blazing new homeschool experience, much different than we did. We did ours on a much smaller old-fashioned scale. My brokenness in this rebirth of FASD hope and Blazing New Homeschool Trails came from when our son was hospitalized. That is when he finally received his diagnosis.

How old was he?

It was before his fifteenth birthday. It broke me. I talk about it in my book. That is where I was completely broken. You and I were talking about your journey. For me, physically, when I had that hysterectomy and all those years before, that was my physical brokenness, but the core of me as a mom, I was broken when he was hospitalized because he was away from me. He was in an environment that was scary for him and I couldn’t help. I saw him one hour a day, but the miracle in it, you and I both know that there are no accidents. The miracle in our son’s hospitalization was he finally received on paper that FASD diagnosis.

There are five diagnoses under the FASD umbrella. They determined that he had fetal alcohol syndrome, which is the most dramatic and impactful. I want people to know that 90% of fetal alcohol spectrum disorders are invisible disabilities. Therefore, there are no outward physical characteristics. Our son had physical characteristics, which going back to everything, we look back, and we are like, “We understand now.”

Can you describe some of those physical characteristics and what got him into the hospital?

What got him into the hospital was 93% of children, teens, and young adults, that have a fetal alcohol spectrum disorder have a co-occurring mental health diagnosis. That is because of the brain damage that has occurred during birth as a result of alcohol exposure. Only 10% of people that have an FASD have these outward characteristics. These are things like a smooth philtrum. It is the space between your nose and mouth. It is smooth. A smaller head circumference. It is a head that is smaller in size. Lower birth weight if you know your child’s birth records. There is a fissure between where your eyes are, and it is shortened. Individuals with fetal alcohol syndrome have a distinct look to their facial characteristics.

GAR 96 | FASD

FASD: Only 10% of people with FASD have outward characteristics.

 

Fetal alcohol spectrum disorder is a spectrum. Ninety percent of these kids, teens, and adults don’t have the outward physical characteristics that we are talking about. It is important to know the primary characteristics of FASD. These are symptoms we were seeing as our son was getting older. Things like dysmaturity. Dysmaturity means that there is a gap between a person’s chronological age and their developmental age.

You think of it as immature, “They are not acting their age.” No. As of fetal alcohol exposure, the part of the brain that was damaged does not physically have that maturity. It is a physical absence of maturity. These were things that led up to the spiral. These are things like impulsivity, distractibility, slower processing pace, auditory processing disorder, visual processing disorder, difficulty with memory, and being able to remember something one day and not the other.

We know that fetal alcohol spectrum disorder is brain-based. It is damaged by alcohol. If we think of something like traumatic brain injury, you have that gap in memory and inability. Some days you can remember certain things, but on other days, you are not able to access that. That is what happens in fetal alcohol spectrum disorder. It often gets mistaken for, “They didn’t listen. They are not following directions.” No, they can’t recall what you told them.

They can’t process what’s coming to them.

Executive functioning is huge. That is a big buzzword in developmental disabilities. Let’s say you give them three instructions, but they are only able to remember 1 or 2. Adaptive functioning is the ability to follow directions and do what is expected of you. Oftentimes, in fetal alcohol spectrum disorder, that gap widens because if we think about how our society views aging, when teens get older, more is expected of them. However, if you have a young adult that has a developmental disability such as fetal alcohol spectrum disorder, it stays the same. That gap widens.

Let’s say you have a child who is middle school age. They are expected to remember their schedule, locker combination, and this and that. They might only be able to remember one thing, maybe bringing their backpack to school. You have to have this brain-based lens in parenting or caregiving teaching anything when you are working with kids that have an FASD or other brain-based disabilities.

After that diagnosis, I was broken. I was on the floor in a fetal position crying after that hospitalization, praying and crying. That is when you heard that voice telling you, “This is what you are going to do.” I am deeply founded in my faith. That is when I could hear God saying, “You are going to help people from this like you and your experience.” That is when I was like, “Let’s do this.”

The next day, the day of his discharge, his discharge nurse was reading me the diagnoses and the medications. I’m frantically writing everything. At the time, I had a two-year-old daughter, and life was busy. The last thing she said was, “He has a diagnosis of fetal alcohol syndrome,” which is one of the several diagnoses you can have under the FASD umbrella.

I dropped my knees because I knew that having that official diagnosis, which we had been seeking for several years after that first verbal suspect having that diagnosis, would open doors for him and for us. Not nearly as many doors that should be open, but it would start opening doors. That is when my rebirth started in saying, “You are going to be an advocate. You are going to learn as much as you can about this so that other parents do not feel as lonely and scared on this journey as you, your husband, and your family did.” That is how FASD Hope and this book were born. That is how my life was reborn.

The other thing I found curious to learn about you is you are certified for mental health first aid. What the heck is that?

You can Google Mental Health First Aid. It is global. I took it shortly after our son’s hospitalization because I wanted to know the symptoms of when someone is in crisis. Our son received a co-occurring mental health diagnosis along with his FASD diagnosis. I wanted to know what were the symptoms that I needed to look for that were stable, unstable, crisis, or scary.

I took this eight-hour course, Mental Health First Aid. It is similar to CPR. Anybody can take it. In the class I was in, there were parents like me. There were some professionals like teachers and social workers. It is an eight-hour class. There is an acronym that goes with it, ALGAE. It is assessing, identifying, and evaluating. Is this person truly in crisis? Do we need to call 911 or an emergency mental health response team? Can we call the doctor?

It was great and helpful for me. I highly recommend it if you are able to take it. Not only do they have it for adults, but they also have it for children too, which is important because we know, especially since COVID, many kids, teens, and adults have mental health crises. You are not being trained to be an expert. It is like CPR. If you see somebody in distress, this is what to do. That is what that training is. It helped me out a lot.

Does it help you identify? If you see someone who got schizophrenia, you don’t diagnose it. Are they aware of the things around them?

Exactly. You get this manual and this book. You get re-certified every five years. You will learn. If a person is choking, can you talk? It is the same training. It is not diagnosing. It is being able to say, “This person is delusional. This is how you identify that. This person is in distress.” It is a help for the common everyday person. You can say, “I think we should call 911 or emergency response. We need to call this person’s doctor.”

It is an extra set of eyes to say, “I think this person is in distress.” As a parent of a young adult who has a co-occurring mental health diagnosis, it has been helpful for me because it has helped me to say, “This is when I should call his doctor. This is when I know he is dysregulated because of so-and-so.” I highly recommend it. I will give you the link to share with your readers. It is called Mental Health First Aid.

Is that on your website?

I think so. If it is not, I’m going to put it on there.

We will direct people to your website. I know that you were given an honor in 2019 from the State of North Carolina.

Every state has a parent disability organization. In North Carolina, it is called the Exceptional Children’s Assistance Center, ECAC. It is a nonprofit for the state for parents of children through adults with any disability. It was the first and the last because they haven’t done this since COVID. In 2019, the year before COVID, they had their first Annual Parent Leadership Summit. If you were a parent of a child with a disability, you could apply for this scholarship to go to this training. It was a weekend training, and to learn how to become a mentor and advocate.

It was wonderful. I met many parents and learned many things. I made many connections. Only 50 people were chosen in North Carolina. I was one of them. I was thankful. It was such a wonderful weekend. It was part of my rebirth. It was part of my saying, “You go from mom music therapist, rec therapist to mama bear advocate to podcast or author.” Things I would never associate with my name. Things that I know now in so many years. Everything was leading up to this.

Here is your chance to tell everyone all the ways to connect with you. You frantically add about Mental Health First Aid on your side note.

Our podcast is FASD Hope. We are wherever you get your podcast. I’m not on YouTube. I’m audio-only. That is the way I like it. We are on Facebook, Twitter, Instagram, and LinkedIn. You can also visit the FASD Hope homepage. My husband works so hard at updating it. We like ourselves to be like that post in the middle of a country road that points to places. We are parents with lived experience. We are not clinicians, experts, or professionals. We are parents who are on this journey who can say, “You are looking for this. Let me point you in this direction.” I’m thankful. We released our 106 episodes. We have been a little busy.

This is amazing how many people have this issue.

In a study in 2018 done by Dr. Philip May, UNC, 1 in 20 first graders is estimated to have enough FASD. It is not an adoption foster care issue. If you think about how many pregnancies in this country are unplanned and how many people consume alcohol? Add the stress of COVID, which research has shown that in maternal age, women since COVID, and this was done in 2020, so I can only imagine it is higher. There was a 40% increase in binge drinking among women of maternal age. Typically, you don’t find out you are pregnant until about six weeks. By then, people think, “I will stop. That is okay. Maybe they don’t stop or cut down.” No amount of alcohol is safe. There is so much stigma in this disorder, but there should not be because it could happen to anyone and anywhere.

GAR 96 | FASD

FASD: In a study done in 2018 by Dr. Philip May, UNC, 1 in 20 first graders is estimated to have FASD.

 

That is the passion behind FASD Hope. I also co-authored the book Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities. That is available on Amazon. My co-author Cindy and I hope to be resources for anyone out there looking for help on this lonely road of parenting, caregiving, living with FASD, or any other brain-based disability.

It is not lonely now because you are there as a guide. If they want to find you, is it FASD Hope?

If you want to email me, I will share this information. That is the easiest way to get in touch with me.

What is Natalie’s tip for finding rebirth, reinvention, and joy in life?

I’m going to share with you one of my favorite quotes from one of my favorite authors. I shared this when our podcast launched in October 2020. It is by CS Lewis. His quote is, “There are far better things ahead than any we leave behind.” That is my tip. This wonderful guest whom I interviewed gave me this analogy. Life is like a spiral staircase. We can only see a couple of steps. We can’t see what is happening. We need to find that joy and strength in getting from that one step to the next step. Don’t think about it down the road. Think about getting from step to step. That would be my best hack.

Life is like a spiral staircase. We can only see a couple of steps and can't see what is happening. We need to find joy and strength in getting from that one step to the next. Click To Tweet

Natalie, from my heart, thank you so much for educating us about FASD. This is such an important and inspiring story of rebirth and reinvention with us. I applaud you for the ways you have triumphed over daunting obstacles, found rebirth, and truly remarkable ways you have reinvented your life. You are an inspiration. I thank you from my heart for this enlightening and heartwarming interview.

Make sure to follow and like us on social, @IreneSWeinberg on Instagram, Facebook, Twitter, and especially on YouTube. Please subscribe and hit notify to make sure you will get inspiring new interviews like this one with Natalie coming your way. Thank you so much. If you’d like to be part of this special rebirth series, please send me an email. As I like to say, “To be continued, many blessings, and bye for now.”

 

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