Jillian Benfield: Working Through Grief After Diagnosis and Transforming as a Parent

Transcript for Podcast Episode: 217
Jillian Benfield: Working Through Grief After Diagnosis and Transforming as a Parent
Hosted by: Dr. Mary Barbera
Guest: Jillian Benfield

Mary: You're listening to the Turn Autism Around Podcast Episode number 217. I'm your host, Dr. Mary Barbera. And today I interviewed Jillian Benfield, who is the mom to three, including the mom of Anderson, who's eight years old and has Down syndrome. But the episode isn't really about Down syndrome. It's about Jillian's new book, The Gift of the Unexpected. And we talk all about grief, expectations, hope, how our lives are transformed by being parents of Disabled children. It's a really great episode and I hope you love it as much as I did.

Intro: Welcome to the Turn Autism Around podcast. For both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, Autism mom behavior analyst and bestselling author, Dr. Mary Barbera.

Mary: Thanks so much for joining us, Jillian. I'm really looking forward to this interview.

Jillian: Thank you. I was really excited when you asked about it. Yeah.

Mary: So I saw you on Facebook. I saw that you had a new book coming out. And at the time when people are going to hear this, the book has been out for a month or so. So I got the privilege of reading the first two chapters last night. I am super excited to help you get the word out about the book because I think it's so important. So, you know, this episode is going to be about expectations and the gift of the unexpected, and that's the title of your book. But before we get into all of that, tell us about your fall into the world of special needs.

Jillian Benfield on the Turn Autism Around Podcast

Jillian: Sure. So I'll start in 2013. I was a news anchor and reporter in Augusta, Georgia, and Columbia, South Carolina. And my husband was in dental school at that time. And when he graduated, the military footed his dental tuition bill and they moved us across the country for a one year residency in Las Vegas, Nevada. So we had just had our first child. It was the perfect year for me to take off. And then I thought I would go back to TV news. Then I got the phone call that our next assignment was where we would spend the next four years of our lives in Alamogordo, New Mexico. So I don't know if your audience is familiar with Alamogordo, New Mexico, but there is not even a target in Alamogordo, let alone a TV news station. So I was pretty devastated that day. I mean, I cried incoherent tears that day just wondering where my life was heading now? And that same day I got this nudge to take a pregnancy test and it was positive. And we were not trying. We were not in the business of trying. We had a newly turned one year old and I just thought, okay, I guess I'm supposed to be a stay at home mom. Well, fast forward three months. We arrived in Alamogordo and I almost immediately had my 20 week ultrasound. And I noticed that the ultrasound was taking a long time and the techs finally got her measurements and she thanked us. She flipped on the lights, walked out, and a nurse walked in and she goes, Well, everything must be great because the doctor's not here. And as soon as she said those words, he walked in and he explained to us that there were several markers on the ultrasound that indicated that our child had a higher chance of having a trisomy and me having no medical background said, Well, what does that mean? And he said, It means your child has a higher chance of having a condition like Down's syndrome. And I just remember my back breaking out from fire and the words, I can't be a special needs mom, I can't be a special needs mom. I can't be a special needs mom. Just repeating over and over again in my head. Well, then we got bloodwork done and I got a phone call from my husband about nine days later that the doctor I called him and told him that it wasn't good news and that we needed to come in. And we did. And his speech went something like this. It was, well, it's not good news. Your child has a 99.9% chance of having Down's syndrome. And it's normally at times like these people want to talk about their options. What? What options? And he said, option one is you terminate the pregnancy. We don't do that here, but we can get you to a place that does need to make a decision quickly. And I said, what's option tw? He said option two is you continue your pregnancy with a high risk doctor. And my immediate question, which I think would be most parents question, is what can you tell us about Down's syndrome? Like, what does this actually mean? Like, what does it mean for his life? And he seemed very surprised by the question. And he kind of did this thing with his eyes like this. And he waved his hand and he said, oh, well, at worst, he'll never be able to feed himself and at best he'll mop the floors of a fast food restaurant one day. But don't worry. Yeah. And it. It got worse. Sad. But don't worry. Don't worry. You don't have to be a hero. You can have the baby here and we can keep him comfortable. But we don't have to do anything drastic to save his life. So, in other words, we could have the baby to keep our consciences clean. But we can let him die of natural causes. The doctor believes that our child would not have a life worth living. And I believe that is in part why I grieved as if a death had taken place. Mm hmm.

Grief with Diagnosis

Mary: Yeah. Wow and, you know, I know there's a lot of people listening that have children with autism. Either they had issues along the way, You know, a higher percentage of preemies, for instance, go on to have an autism diagnosis. Whether there were delays from the start or whether, like my son regressed and, you know, was typically developing and then, you know, started to regress and it was confusing and a struggle to get the diagnosis. And, you know, I, I literally felt the same way when we got Lucas's diagnosis the day before he was three. And then at the third birthday party, which was already planned, you know, the next day, I said I felt like we were grieving, Like it was almost like not a birthday. It was like a funeral because we were grieving that. You know, expectations out the window. You know, even on the drive home from the hospital after Lucas's diagnosis, my husband was saying things like, he'll never get married, he'll never go to college. And I'm married to a physician, too. So I can relate to all that. And I'm also a nurse. And I told him to stop, you know, like his brother never went to college is, you know, like, we don't know what Spencer's going to do. He's only 18 months old at the time. Like, who are we to have all these thoughts of a perfect life with a white picket fence? And so I think at that moment, you that's why reading your book last night, the first two chapters was like, Yeah, this makes so much sense that we live our lives, we have our careers, and we expect, you know, you had one child and everything went well and they're progressing on, you know, you're not expecting something like this to come in and and be so disruptive and then kind of tear apart your whole expectations of life.

Jillian: Right. Well, you know, I think for most of your listeners, we're products of the American dream, right? If you work hard enough, you can have the life that you want. And I think that when you have something like this happen and there's nothing that you did to cause it or can do to prevent it, you know, it kind of rocks your core because, like, you're a nurse, your husband's a physician. You know, I was a journalist. My husband is a doctor. And we did all the right. We had done all the right things right. But we don't have that kind of control. And we know that in the back of our minds. But because that American dream mentality is so strong for all of us, you know, it just shakes you to your core.

Mary: Right? So your son was born. He has Down syndrome. And he also has Down's syndrome. He also has some heart issues. Did he need surgery right away or?

Jillian: He did so at five and a half months. We had to get him to 10 lbs and he got to 10 lbs at five months old and he had open heart surgery.

Mary: And how old is he now?

Jillian: He's eight.

Mary: He's eight. And you have three children. So what are their ages?

Jillian: I have a nine year old girl. I have Anderson, who is my son with Down's syndrome, who just turned eight and a five year old boy.

Mary: Okay. All right. So that, you know, obviously changed your world, changed your life, changed your family. So what about your life? Did you decide to write a book and like, what's the book about? And how might my listeners... I highly recommend the book. I preordered it. I read the first two chapters. It really does. It's not about Down's Syndrome. What is it about?

The Gift of the Unexpected

Jillian: So the book is about really how the unexpected things that happened to us in our lives can ultimately help us become who we're supposed to be. That doesn't mean that the unexpected things that happened to us in our lives happened on purpose. There are some things that are unexpected that are just too painful and that I would never tell anyone that, well, this happened so that this could happen. But the things that happened to us, including having a child with a disability, are able to show us who we really are while pointing us to who we are really supposed to become. So the book is in part about that grief. And then I had to dissect why am I grieving so much, why did I grieve so much? You know, and at the end of the day. I realize that I believed at the time when I had my child, and for years after probably that my worth was attached to my resume. So if I believe my worth is attached to my accomplishments and my attachments. Right. Like your husband went right to the. He'll never get married. He'll never go to college, right? Absolutely. That's where our minds went, because that's what we value as a society. There was a Gallup poll that I quote in the book where when we asked people what we view as success, marriage is at the top of that list, followed by education. Right. But those same people who were questioned wanted to break away from that. Right. They wanted to break away from this version of success and have their own unique versions of success. And my point in saying that is that the unexpected can help us unlearn the bad ideas we have received from society that our worth is attached to our output when really our worth is intrinsic. So that's the crux of the book. It's about how we can unlearn the bad ideas that we have been given by society, by our churches that tell us that we have to earn our worth in this Americanized way, when really our worth is something that has already been given to us. And when we are living in that place, then we can really become the fullest versions of ourselves.

Mary: Yeah, I like that. We did do another episode with a mom who had a son with Down syndrome and autism. We can link that in the show notes. I did an episode with my husband to which we can link in the show notes. And another thing I liked about your book related to kind of my husband and our grief was you said in the first chapter or two that your good memories are fuzzy. And I always say that I'm like, I have a bad memory for things... Were we ever at a Jimmy Buffet concert? Yeah, we were. We were there three times. We had a party at our house. I'm like really? But you said for things that our problems were bad things, quote unquote, bad things. The details are so.. so there so like. When I interviewed my husband, it's like and maybe it's because I tell the story. I write about our story all the time. So like, it's a part of my more normal talking about it. But I remember the details. I remember where we were, where we were standing, the carpet color of our old house. Like the details of when you get quote unquote, bad news, you know, it was something I never read before. So.

Jillian: Yeah, it's I just remember that feeling so distinctly like you're you become you enter a tunnel, you know, and everything in that tunnel becomes so crystal clear around you. And it's kind of like you're having an out-of-body experience, I guess. And yeah, and I do talk about that in the book because I think anyone who has been delivered any kind of really hard news can relate to that. I think that's a very common human experience.

Mary: Yeah. You say tunnel like I kind of use the analogy. Like I felt like I had fallen into a deep hole with Lucas and had to figure out how to get myself out of it with him on my back, You know, like, it was a lot. And there were a lot of… Where do you start? What is it? What are the experts? What are the, you know, outcomes? What could we know, and with autism, the range is so much more than Down syndrome. Even. You know, you have people with autism that I've interviewed that are fully conversational, going to college, driving, getting married, and...

Jillian: I was going to say that with that hole and you trying to dig yourself out of it, you know, that piece of the logistics is not necessarily the hardest piece, even though it's super hard. Right? Like to do the research to find the things that you need to find to help your child, to call this person to deal with this insurance agency. And you can go through those emotions, which is difficult. And it's what I always say is that being a parent of a kid with a disability. Is more. You know, I've had people say, well, you could say this about all parenting. I'm like, yes, and also no, because it's more there is a layer to my life that you cannot understand, but you can deal with that more in your mind. The hardest part is dealing with that under layer when it comes to yourself, you know, and really observing your grief and sitting with it long enough and allowing it to teach you so that you can eventually move forward. Not only move forward, though, but move forward in change.

Mary: Yeah. And I think another reason why grief is hard to talk about in the autism world is because there's a subset, you know, a minority of very vocal people who have very high levels of autism or self diagnosed autism, who believe that autism is a gift. And you should just be you know, you should never have gifts like the analogy of the funeral. Like, I could get backlash for that procedure. And it's like, do you have that in your life? Like, are people expecting you to be like, just happy and accepting and.

Jillian: Sure. So I try to be careful about what I say about Anderson in the hard parts of our lives. But because I do believe that Down's syndrome is intrinsically tied to his identity, I believe that he would not be who he is without Down's syndrome. And I believe my son is who he should be. But what I will say is the word that I typically use when discussing the hard parts of our lives is the word. And, you know, like I used to be a bad user, so would be like, you know, going to all these medical appointments is really hard, but it's so worth it, you know, I would minimize the hard parts of my life. But now what I do or what I try to do is just hold it in both hands, right? So disappointment and joy can coexist, you know, stress, extreme stress that can come with parenting a child with a disability and gratitude can also coexist. So I try to live my life not in a world not where I minimize the hard parts. And there are hard parts. There are hard parts. I told you before we started, you know, the things that I thought would be the hardest. The idea that maybe he would always live with us and I don't know if he will, but maybe he will. I don't know. That part isn't hard for me anymore. Or as much as it was, the hard parts for us are really behavior related and relate to that ADHD component and things that I think your listener can relate to. Those exist, the hard parts exist. And also, I can honestly tell you I am grateful that my child is who he is, and I'm grateful that I get to parent him and I am not the same. I would not be the person I am today without him. And both of those things are true. And so that's where I try to live while trying to respect my child's privacy. I'm sure I've failed. I'm sure I have gotten backlash from similar advocates before, and I try to learn from that and try to live in this AND world.

Mary: Yeah, that's nice. You do talk also in your book about ableism, and it's kind of, I would say, a newer term, you know, to me anyway, like in the past, say five or seven years, you know, the term ableism or you're an ableist or I don't think we've ever talked about the word ableism. Can you define it and tell us what you mean by you thought you were an ableist?

Special Needs Families and Ableism

Jillian: I wish I had the definition in front of me. I use it in the book. It's from activist Leah Smith. And she I'm paraphrasing here, but her definition is essentially that ableism is the idea that disability is inherently inferior and is something that needs to be fixed. And so, yes, I do believe that. I still struggle with Ableism because just like all of our inherent biases, they're always there. Right. But now I know about it, and I can relate to my son better because I'm aware of it. And when I look back at some of those hard moments, it's because my ableism was so glaring and I didn't even know I had it. And part of that is because when I went to high school, there was us. And then I never saw people with disabilities in my high school. Never. The only time I would see them is when they had a hall pass to go to the bathroom or when I'm sorry, when I had a hall pass to go to the bathroom and you would see them kind of walking single filey behind their teacher and with their aides, that was there was us in them. And so my ableism is hard on me, but it also in part comes from a society that still abides by separate but equal. And we still see that play out today in our schools. You know, we were at my child's IEP, three IEP meetings ago, and our advocate at the end of the meeting said that her daughter said to her, you know, mom, I know you do all this advocacy and fight for inclusion, but I only see kids with disabilities when I have a hall pass. I was in high school 20 years ago. This is still the norm. So students with intellectual disabilities are only included in the classroom, in high school with the most severe and actual disabilities 18% of the time. You know, this is if we want to become a less ableist society, if we want more rights for our disabled children, if we want, we have to change this. Because if we don't know people with disabilities, then this pattern of ableism is going to continue.

Mary: Yeah, I think in the preschool early in elementary years, it's a lot easier to include kids with disabilities in inclusion because there's also the not only would be disruptive like in Lucas's case, to be pushed into something, it would also be in many situations like a waste of his time if he doesn't understand what's happening, you know, he doesn't understand the concept. Me as a behavior analyst would rather have him doing more work that is at his level. But inclusion is like you said, it can't just be when a hall passes. I mean, there has to be exposure. I think in Lucas's case, he was out in the community. He, you know, went to a typical preschool. He went to the pool, he went to church, he went, you know, and so, like, it feels like everybody in our town and at the school that he went to, he's 26 now, knew him, knew a fair amount about him and were always kind to him. But there again, you know, the autism spectrum is so wide that there are kids without AIDS regularly. You know, it's just so complicated and it is complicated.

Jillian: But I do think that we can do better. You know, they can't just be hall passes and it can't just be at the assembly. You know, we need more integration. That doesn't mean 100% of the day for every student, but we need that to be our default setting, right? We start with inclusion and then see what supports and other things that are in place.

Mary: Yeah, definitely. And the whole idea of, you know, wanting to fix things. Like, I get that and I mean, I'm with you like my whole life. Yeah, I didn't have much exposure, although I did have a cousin with Down's syndrome when I was eight or ten years old. He was born and, you know, really changed for the better our family. And he always wrote birthday cards to everybody. And it's just a real joy. So I can definitely see, you know. I was exposed to Down syndrome through my cousin. But like, in terms of fixing things, it's like as you're talking about your son with problem behaviors, I'm like, wow, you know, you could read my book, which is a lot about problem behaviors. You could, you know, take the term tantrums around mini cause so we can link these in the show notes. But where do you get like you're taking Anderson, when he's a baby to therapy and you know you're not.

Jillian: Trying, knowing, there's a balance. Yeah.

Mary: You're just trying to.

Jillian: Aid him to live the fullest life possible. That's what I would say. You know, I don't wish Down syndrome away, but I do try to help those things that come with Down's syndrome like low muscle tone, you know, So he does have therapy so that he can write, you know, and he used to have therapy so that he could start walking. And we still have speech therapy. Speech therapy will probably be a part of our lives for a very long time. And all of these things are for any of our kids, kids that don't have disabilities, we all have to give them the tools to help them in the fullest life possible. And that's how I look at therapy and behavior interventions and things like that.

Parenting and Hope

Mary: So you have two typically developing kids and then Anderson, too. So what are your hopes and dreams and expectations for all of your kids?

Jillian: Hmm, that's a good question.

Mary: And do they? They differ with Anderson.

Jillian: You know, I think they do. If I'm being honest, I think when he was young and I was in that hole, like you're talking about, you're getting out of a hole and you're doing all the things and you're checking all the boxes. And I thought that, you know, if we just work hard enough, again, that mentality, if we just work hard enough, we'll get him to this place where he can still do all the normal things, right. And that's my normative bias that's in my head now. You know, I do think that his life will look different. His life is different. And that's okay. And I think one of the biggest lessons that he has taught me is that a different life is not less than life. He has a different life. It is not less than life. We have a different life being his parents. And it's not less than life. It comes with hard parts. It comes with sometimes sad parts with the way that the world might interact with him. And it also comes with a lot of joy, too. So different life, not less than life. So I would say that I used to think that he would go to a college program of some sort, and he might, but that's not like the marker for me, for him, for success.

Mary: You have no control over that. Yeah. It's like you don't have any control over anything that's going to happen in the future. Like you can hope. And actually, in my first book, the. The little acknowledgement said, you know, to Lucas, who taught me to hope, but not to expect and appreciate the small steps along the way.

Jillian: Hmm.

Mary: And so, you know, yeah, you can always have hopes and dreams and, well, maybe. But I can very much relate to your attitude. It's like. And as kids get older, you know, now, Lucas is 26. Like, his life is I mean, minus any miracles that happen, you know, it's going to be pretty much, you know, he's going to live his life at this level where he lives and all that kind of stuff. Not that he can't grow and change and still make progress, but. So what are your tips for, like parents who have just gotten a diagnosis of whether it's Down syndrome in utero or whether it's autism at three?

Jillian: Well, I would say first, I think that grief that you feel is normal. And I would sit with that grief and I wouldn't try to skip over it. And eventually, when you get a little bit higher out of that hole, then you can start examining the grief. And that's when you'll learn things about your belief system that maybe you didn't even realize you had. You'll learn things that you need to unlearn, and you'll learn things that you need to learn anew. And so my advice is to go all the way through it. I talk about this in the book. It's, you know, we have an overcoming narrative in our society, right? We expect people when something big and unexpected happens. We expect them to return to their normal selves as quickly as possible. And then we say that they overcame that. What I'm suggesting in this book and what I'm suggesting to your parents now is to not do that, because it's easy to do that nowadays. You can come out with Netflix and wine delivered to your doorstep and you can push through and put on a happy face and people will never know otherwise. But what I am suggesting in this book is to do the deep work. Sitting with your grief and working through it and figuring out the things that are contributing to your grief. What are the things that maybe need to go and what are the things that need to stay and what are the new things that you need to acquire? And that the book is not a how to you on how to undergo, but it's the lessons that I have learned as a parent of a child with a disability while spending many years undergoing and that would be my number one piece of advice is to go all the way through it.

Mary: Yeah, that's great. Have you benefited from support groups or networking with other parents?

Jillian: You know, my husband was active duty in the military for eight years. Nine years, and we moved in those nine years five times. So I. You know, our lives were just a little bit different. Thankfully, I did have a support group called the Down Syndrome Diagnosis Network. If there is anyone who has a dual diagnosis listening to this and they are wonderful. But yeah, some online spaces and people you meet along the way, you know, there's no other greater connection. I feel like that I have more than with another parent who has a child with a similar disability to mine. And I talk about in the book how there's a place where we meet and that place is at the intersection of unexpected and transformed. You know, nobody can quite understand this life that we get to live alongside our children and all that comes with it. That and things we talked about earlier than other parents. So I do believe that connecting with other parents is essential.

Mary: Yeah, I do too. That's great. So before I let you go, two things. How can people follow you? The name of the book where they can get it. Just let's talk about that and then I have one final question. So how can people find you in your book?

More from Jillian Benfield

Jillian: So first, my website, JillianBenfield.com. I'm on Facebook at Jillian Benfield and Instagram at JillianBenfiledBlog. I have several free resources on my website for parents of kids with disabilities. One is parent advocacy 101. I am a partner in policy, graduate, and highly believe in inclusive advocacy. I had big time advocates review this little free resource for you, and I would love for you to grab it. And another one is called Five Spiritual Comforts for parents of Kids with Disabilities. And that's, of course, where you can also grab my book, which is called The Gift of the Unexpected Discovering Who You Were Meant to Be When Life Goes Off Plan. And that is also on Amazon, Target, my publisher, which is Baker Publishers, which will always be 30% off if you get it there. And I can't remember what else you ask me. Okay.

Mary: Well, a couple things in the show notes that I think we should add, because just you talking along the way, but also just your summary, we have a show with a military wife. If there's other people listening in the military, that might be helpful. We have a show on IEPs with master IEP coaches Amanda and Kirby. We can link and we also, I know from reading the first two chapters of your book, you're very religious and there's definitely a religious tone to the book. And we interviewed Elizabeth, who is a pastor, and she has a son with autism, where we did a hot seat with her, I believe. So we can link those on the show notes. They might add to the discussion. I think your discussion about grief and expectations and hope is just spot on, not only for people living with kids with Down syndrome, but also for the whole autism spectrum and any kind of disability. I think it's such an important conversation even about ableism and about just being honest about the grief that can happen and the transformation. I love what you said about the intersection of what unexpected and transform.

Jillian: Transforms.

Mary: Transforms. Love that. So thank you so much. Before I let you go, I always like to end the same way. Part of my podcast goals is not just to help the kids, but also help the parents and professionals listening. So what kind of self-care or stress management tools do you personally use that help you be happier and less stressed?

Jillian: I would say I don't know if your listeners are going to like this, but having an early alarm, I set a 530 alarm and I pray, I have my coffee without children. I guess it's a 515 alarm and I work out for 30 to 45 minutes and nothing has been better for me than that first hour and a half of my day. And I, if that helps somebody great. I know that's not for everyone. I do have a traditional New Year's resolution this year, which is to add at least one round of yoga a week, like not just hard, hard exercise, but like clearing your mind. So we'll see how that goes.

Mary: Awesome. Well, best of luck with the book. I'll be promoting it and spreading the word, too, because I think it's excellent and I really enjoyed getting to know you better. Thank you, Jillian, for being with us.

Jillian: I appreciate you so much. Thank you.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll. Life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism and you can learn more about joining my online course and community at a very special discount. Once again go to MaryBarbera.com/workshop for all the details. I hope to see you there.