Finding Your Voice: Becoming an Advocate for Your Child and Yourself, with Jaclyn Greenberg

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It” podcast where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey and I hope you enjoy the conversation. 

Welcome back to the show. Like many of us, my guest today has grappled with the weight of mom guilt. Navigating the complexities of parenthood while advocating for her son's needs and also learning to advocate for herself.

I'm so excited to introduce you to Jaclyn Greenberg, a mother, writer, and advocate whose experiences have ignited a passion for accessibility and inclusion in our communities. Jacqueline's middle son was born with multiple [00:01:00] disabilities, sparking a transformational shift in her life's trajectory.

Leaving behind her corporate career, she set out on a mission to bridge gaps and champion inclusivity. Drawing from her recent completion of the Rutgers Partners in Policymaking program at the Boggs Center for Developmental Disabilities, Jaclyn brings invaluable insights to her advocacy work. Her writing has been featured in the New York Times, CNN, Wired, and HuffPost, among others.

And she's working on a book called Keeping Us Together: a Memoir About Motherhood, Accessibility and Inclusion. Jaclyn and I explored the moments that have shaped her advocacy, the challenges she's overcome, and the unwavering hope she holds for a more accessible and inclusive future. Without further ado, I bring you Jaclyn Greenberg.

Welcome to the show, Jaclyn.

Jaclyn Greenberg: Thanks, Jessica. I'm so excited to be here. 

Jessica Fein: I'm so excited to have you here. Let's start off by hearing about your family. Tell us about your family. 

Jaclyn Greenberg: I have three kids. Almost fourteen, almost twelve, and [00:02:00] almost ten. Very, very almost ten. So, that one's coming soon. 

Jessica Fein: You had a pattern going there, like, every two years.

Jaclyn Greenberg: I did. They were all born in three years and ten months. 

Jessica Fein: Okay, so you were a little busy. 

Jaclyn Greenberg: I was a little busy. I had a small family growing up. So, I was determined to have a larger family than what I grew up with. I grew up with a single mother, and it was just she and I. And I didn't really know my father's side of the family at all growing up. So yeah, it was always on my radar to have a large family. And I guess when you're little, you kind of think everybody has the same plan, but clearly that's not true. 

Jessica Fein: Right. Well, clearly the whole idea of plans are a little bit backwards. My favorite mug has the quote. Man plans and God laughs.

Jaclyn Greenberg: This is very, very true. 

Jessica Fein: I think God must be laughing very hard or crying very hard about the idea that I had planned anything. So tell us, when did your plans start to go off track? 

Jaclyn Greenberg: Probably the day that my son was born, my second [00:03:00] baby. My husband and I, We had known each other since high school, had my daughter, had owned a home, we both had corporate jobs.

I had my daughter in the daycare at my job, so it was really easy to balance. When we talk about the load between husbands and wives, it was very balanced back then. We drove to work and daycare together and had time. And then when my daughter was two, I was pregnant with my son. Everything was perfectly fine until the day he was born.

I was at my job at noon. I had lunch with a friend. I left my computer up at two o'clock for what I thought was a routine ultrasound appointment, and that is when everything changed. The ultrasound tech did a little bit of looking, put the ultrasound wand down, ran out of the room, got the doctor who came in, looked for a minute, and said, your baby is very small, has fluid in his brain, an enlarged heart, you have to deliver him immediately.

I had a 2 15 appointment, so, what was that? I don't know, 2 45? And my son [00:04:00] was born at 4 30. 

Jessica Fein: Did you even have time to call work and be like, hold up, I'm not coming back? 

Jaclyn Greenberg: We called our parents on the way to the car. I don't distinctly remember calling work, but I'm sure at some point that happened. I remember calling my mom.

And I write about this, about how I had these mixed emotions where on one hand, I was almost 35 weeks pregnant and I didn't love being pregnant. And I was always very excited to meet people. So there was this part of me that was just excited to meet him sooner than what I would have thought. Looking back Obviously, that's not the right choice because there was a problem, but I hadn't digested any of it yet.

It was just all so shocking. And then, I actually had three C sections. He was my second C section, and I vividly described in the book that I'm writing about how that's the one thing that I really noticed. It's the difference between my daughter's birth and my son's birth. So my daughter's birth, there was music playing overhead, and there were two doctors, and they were laughing and joking and guessing the [00:05:00] weight of my baby because I'm small, and they were kind of laughing about she would be petite.

And with my son, everybody was serious. There were three times as many doctors and nurses in the room. Nobody was talking. There was no music. As soon as he was born, I didn't get to see him. As quickly as people entered the room, they all left the room, including my husband, and I was left with a doctor and one nurse who was holding my hand and just the tears streaming down my face.

I did not understand what had happened at all. 

Jessica Fein: When did you begin to understand? 

Jaclyn Greenberg: I did get to meet him that night at midnight, but I still didn't know what was happening. My husband took me to the NICU. I was insistent, but it was probably a bad choice because I felt faint after I saw him, just from the surgery and everything.

The next morning, they told me that I caught a virus when I was pregnant that impacted his development and that they wouldn't really know what damage was done. They were going to wait. A lot of this is a blur, which I'm sure you can understand. But I didn't know until five weeks [00:06:00] later. They were waiting to do the brain MRI until the due date.

Until his actual due date. So he was born around 35 weeks. He spent five weeks in the NICU. I was there every day, pretty much by myself. My husband stayed the first week. So that was very upsetting for me. I was discharged and sent home without him. And then I I spent the mornings and evenings with my two year old daughter, and then about ten hours a day in the NICU with my son, just trying to help him grow, and I would sing to him, and do whatever I could to help.

There's such a range of outcomes with babies born with cytomegalovirus that they really just didn't know what was going to be. Until that brain MRI, and then I had another shocking diagnosis that day too. 

Jessica Fein: So before we get to that shocking diagnosis, what I'm struck by in this, well there's so much obviously, but they said to you it sounds like, pretty much immediately, you caught a virus when you were pregnant.

And your son now, you know, we don't know what the outcome is [00:07:00] going to be. Boy, that really seems like a pretty lousy way to tell you what's going on. You caught a virus. Did you feel like you were being blamed? 

Jaclyn Greenberg: You know, when you hear something so shocking, you kind of laugh because it's just almost humorous.

Like your reaction is just the opposite of what it should be. That was my reaction because I am very type A. I was a tax accountant. I have a master's degree in tax. You know, very organized. I try to be on top of things. I really wouldn't even chew gum when I was pregnant because I was just nervous about so many different things.

So for them to tell me that I caught a virus when I was pregnant, I really couldn't even wrap my head around it. And looking back, I think that that layer of guilt is what made everything so much more difficult for me. I really did blame myself and probably still do in a lot of ways. I mean, he's 12 now, but I say it was preventable.

I go back and forth with this all the time. My husband actually gets upset with me when I say that I caught a virus because of the exact reason that you're saying. [00:08:00] It's not like I did something intentional. I didn't know it existed. Most pregnant women don't know about this virus. Doctors don't tell them about it.

It's a torch infection, so the T is toxoplasmosis in torch. That's the one where you're not supposed to touch cat litter, but the C is cytomegalovirus. And I have a lot of friends in the community that are lobbying for women to be much more aware of it. I wasn't. And the only time I had heard about it, I had regularly been donating blood.

This was before I was pregnant at my corporate job. And every quarter I would go with friends and we would sit and donate blood and I had a blood donor card. And it said CMV negative in the bottom corner. And somebody said to me, Oh, how wonderful, your blood is CMV negative. Your blood can go to preemies.

I didn't ever think to understand what that was or what the implications could be in my life. Looking back, I would have hoped that someone would say, Oh, you're a 28 year old female who's CMV negative. This means you've never caught the virus CMV, most people will have it by [00:09:00] the time they die. You should really avoid it when you're pregnant because it can cause a lot of disabilities and challenges to your unborn child.

So it impacts people that don't have an immune system. So I had an immune system. So technically I was able to fight it off. Although when I think back to it, there was a period in my first trimester where I felt like I had mono and I chalked it up to working at a corporate job, having a toddler, being pregnant, I thought I was just exhausted and then when I was pregnant with my third, I realized that was different.

Jessica Fein: But what if you had known, so for example, I've never heard of CMV, and what you're saying is they should have at that point mentioned something to you, like, be aware, but what if you were aware? What does somebody do? How do you be aware about not catching a virus like this? 

Jaclyn Greenberg: So it's somewhat similar to the COVID protocols, where you avoid bodily fluids.

So you would kiss children on the head instead of on the cheek, you would maybe use, you know, gloves, when you [00:10:00] change diapers, you would just try to avoid as much as you can getting a virus. And I'm sure a lot of people have a lot of mixed feelings about that because that's really difficult, especially when you have a toddler.

And the first article I ever published was about this. It was right at the beginning of the pandemic and everybody was worried about COVID. And in the piece, I talk about how I really faulted myself. Or not knowing better and getting sick. And then when I had my third baby and he was really little, one day he just sneezed in my face.

There's just so much you can control. There's just so much of life we can control and I think that's been the hardest pill for me to swallow which I'm sure is something that you can relate to. As much as we want to control life and that was the biggest lesson for me, right? I was frustrated with some of the ways that my childhood went with Feeling lonely and feeling like I didn't have a big family and wanting to create that for myself.

And I thought, oh, you know, having a business degree will give me [00:11:00] the financial stability to do that. And then, you know, and then I'll have my family. And, and you're right. When you plan, God laughs. And I think the biggest lesson in that is, you know, I mean, I hate to use the phrase, you know, it's how you dance in the rain, but rebounding, how you pivot, how you recover, which is exactly what you talk about, and that's why I was so excited to be here because I really respect the people who have been dealt something challenging, something you can't imagine and done something with it, rebounded.

Because we've all been shot down or had the rug pulled out from under us and had to pivot and figure out, okay, what's next. I always thought I would work. I always thought I would have a career because I wanted financial stability. The way that, you know, my mom struggled in that way. And then I was a stay at home mom for six years to support my family because having a child with severe disabilities is hard to juggle everything.

Jessica Fein: Yes, it is. Yes, it is. So let's back up to that diagnosis because we were there and then [00:12:00] we kind of moved aside for a minute, but I want to get back. So tell us when you got that diagnosis. What was the diagnosis, first of all, and how was that delivered to you? 

Jaclyn Greenberg: So one day I was sitting in the NICU with him and a neonatologist came and introduced herself.

We chatted briefly, I, I felt very much like an equal. She looked at my son, said he looks really good. A nurse is gonna come, she'll be back in an hour with him. And so my husband and I sat and waited in the room. About an hour later, a neonatologist was talking with a neurologist outside in the hallway, and I could tell immediately from their body language that it wasn't good news.

They came in the room, sat down, and said, The brain MRI showed that your son probably will not walk or talk. That the brain damage was more extensive than we had hoped, and there's just a wide range of outcomes, but he probably won't walk or talk, was the way they delivered it. I can't decide if that was a good way to say it or not looking back, [00:13:00] because he really didn't get a diagnosis of cerebral palsy until he was 10 months old, and it was kind of thrown at me in an angry way.

I've found that it's been difficult, in my experience, for the medical community to share that kind of information. I guess maybe there's somewhat of a sensitivity, but it's difficult for them to share that kind of news. And so, the way that it was always explained to me was kind of harsh. We don't know enough about the brain was kind of the answer.

They just didn't know enough. But the virus had damaged his brain significantly. So he was very small and very symptomatic. CMV babies, 90 percent of them are asymptomatic. He was symptomatic. So he was very small. He was under three pounds. had a rash, petechiae all over his body, his liver function was very poor, so the virus had physically impacted him and they were hoping that that was the brunt of it and that his brain had been spared and then what happens is the baby heals from the sickness from his body, that all gets better, [00:14:00] which it did, but if the brain was impacted, then that cannot really repair.

Jessica Fein: Interesting that you note that they sounded almost angry or that they maybe didn't deliver it in the right way. And, and also I note in what you say, it's got to be tough for them, right, to deliver this news. And it makes me wonder what could be done differently. I mean, I know advocacy is such a huge thing for you.

And when we think about people getting that news that will forever divide your life into a before and after. 

What do you think the people delivering that news could do? Or perhaps it's not necessarily even the people delivering the news, but maybe who might be with them. Maybe they bring some people with them who might be able to help.

What do you think would make a difference? 

Jaclyn Greenberg: They always did have a social worker around. I was very sensitive to the changes in their behavior though, because after that diagnosis, I noticed that the vibe in the hospital in general when I came changed. I actually took a brief break. I [00:15:00] just needed some space at that point.

And when I came back, the nurse picked up her little pen, whatever, necklace, walkie talkie thing. Oh, mom's here, mom's here. And they all came kind of flooding around me. The mood had shifted after that diagnosis, and I felt like they were treating me differently. I didn't know what was in my future, but I knew I loved my son.

I was shocked by all of it, but obviously wanted to continue loving him and supporting him. And I actually think that a lot of the medical professionals aren't as aware of the disability community as they should be. Could or should be. And I think that if they were a little more tuned into that community and how people thrive in it, that their behavior might be different.

And I think that there were a lot of resources that I could have used back then. That I was not aware of. For example, my daughter was still [00:16:00] in daycare and I went to daycare and was talking about what the diagnosis and another mom walked by who was a friend of a friend, I didn't know her. And she had a daughter, her middle child.

They never fully diagnosed why her daughter had disabilities, but she had severe developmental delays, and the girl passed when she was four, but the mom said to me, Look, there's a school nearby that my daughter went to that will be great, and your son can go there. And that was the only way that I found out about that school.

They gave me a prescription for early intervention and other things when I left, because they weren't sure which direction he was going to go in. And then just kind of cut me loose, because there's such a divide between the NICU and then when the pediatrician picks up. And I kind of feel like there needs to be more of a seamless transition there, because I had a social worker I liked in the hospital in the NICU, but then She was done.

She was gone. I had [00:17:00] to find my own therapist. I had to find my own support. At one point, my husband and I were worried we were feeding my son at night and he was dribbling a lot. Looking back, that makes perfect sense. He has cerebral palsy, severe cerebral palsy. Of course he was going to have trouble grasping a bottle and drinking it.

But I didn't understand that then, and when I called the NICU, the doctor said, Well, is he getting anything in? Does he have wet diapers? Yes. Okay, that's not our problem. You need to call your pediatrician. So, I feel like there needs to be more of a net, and more of a communication in the community. And, I sought out, other families.

I sought out other experts and doctors. I know a lot of people in the community because I write, and I found you, and I look for this to understand my world, and that I'm not the only one living in this world. But a lot of the medical professionals, they were done, and I understand that they're not being paid for more, that they were paid for what, you know, their job, and then I [00:18:00] moved on, but there needs to be more of an integration of these communities, even all of the private therapies that exist, all of that is kind of under the table, a word of mouth, finding the right doctors, finding the People, modifying my home, getting a modified van, all of these resources that exist, but there is no through line to finding it.

And when you take home a neurotypical child, it's, oh, grab a book, grab Dr. Spock, grab this, grab everything is so Even just getting the bus for my son, it's laughable that, again, again, in my book I have a chapter about transportation and how my daughter started kindergarten the same year that my son started preschool because he was disabled and was able to get full day school.

My daughter hopped on the bus, the bus driver was delightful, she sat next to kids who were just like her, made friends, gone. My son, I mean, I probably went through three different buses. And when I tell you the people that came to my house and we're going to sit my son on [00:19:00] a regular bus seat. And when I said that his head will hit the window, he said, I'll put a towel there.

So his head doesn't hit the window. This is a fully dependent child. Why did I have to learn? Oh, I need a medical letter from a doctor with his 20 line list of diagnoses to get a supportive car seat, a better bus. Somebody who will know how to handle him. I shouldn't have had to go through all of that. I don't think parents should have to go through that.

We're dealing with enough guilt. Societal challenges. Dealing with family and friends. Managing other children. Balancing our jobs and careers. Why does getting the resources for our children have to be so sporadic and difficult to find? So, I guess to back up, I do think there needs to be much more information.

And I know the hospital didn't fully understand what he was going to be like, but they knew he wouldn't walk or talk. So, resources for local schools, more information about early intervention and what it is and [00:20:00] how it works. Recommendations of doctors who are comfortable with and familiar with treating children with disabilities and won't make us feel uncomfortable.

Jessica Fein: So much of it, I think, is this network of parents who dissent. It's where you find your information. And in fact, what's so interesting to me is how many then become activists and advocates. And start to set up the systems and the processes and the networks and the websites for people to find all of this.

I mean, I remember there was a guest on the show, Joanne Goughan, and her child was born with Down Syndrome. This was a surprise to her at the child's birth. And she tells about how in the middle of the night, that very first night, she's just falling apart and she's wailing and she doesn't think she can handle it.

And suddenly she remembers seeing on Facebook somebody in her town whose child has Down Syndrome. She reaches out and the mom gets right back to her and says, I got ya. There's tons of people in our community and I could gonna be there for you. And this is not whatever she said that by the morning, [00:21:00] Joanne was like, I've got this.

Like, she felt she could do this now because of what this other mom had done for her. And she kind of came on the other mom by accident. So I also think some kind of official way to partner parents who are just getting the diagnosis with people who are further along in it who can bring you into the fold.

And not only connect you, but be there for you and reassure you. I mean, I write about the day that my daughter was coming out of the PICU, Pediatric Intensive Care Unit for People Who Don't Know. So when we're talking about the NICU, that's when you go there straight from birth and the Pediatric Intensive Care Unit is when you come back for our audience who might not be as familiar.

And we were in the PICU for three months. So when we came home, my daughter Dalia was in a wildly different physical state than when she had gone in. She was nine. So now she had a trach. She was no longer going to be able to eat. She was dependent on a ventilator. She couldn't walk anymore. So all of these changes meant that [00:22:00] very quickly, our home needed to change, and the equipment we needed, it was like an ICU in the house.

And I remember that day, my husband was with my daughter in the PICU, and I was home waiting for the deliveries. The hospital had arranged quote unquote deliveries. I had no idea what to expect. I mean, I knew we were going to be getting a hospital bed, and I knew we'd be getting some supplemental oxygen, like that's all I was expecting.

And truck after truck pulls into our driveway, and they pick us up. Ring boxes and boxes and equipment and a Hoyer lift, which I had no idea what it was and machines and gauze, so much gauze. There were like 75 different kinds of gauze. And I'm sitting there in the middle of all this stuff going, what is this?

How is it possible that my daughter needs all of this? And I've often thought what a huge thing it would be if a parent or somebody who was really knowledgeable could be with the parent who's new to this situation when those deliveries arrive. To help set up the room, to hold your hand, to say, we got this, to explain what the stuff is.

Jaclyn Greenberg: To explain what the stuff [00:23:00] is. 

Jessica Fein: It's so isolating. It's so scary. I'm like, how is it possible that my daughter needs all of this stuff? I remember they brought in these oxygen tanks and they were like, now you want to make sure that these are, So that you don't bump into them by accident, but you want to make sure they're right there where you can access them.

And I'm like, what do you mean out of the way and right there? And how does this all fit together? And even if I had had a friend with me who didn't get it, I think they would have been equally overwhelmed, right? So I think there should be this network and they should say, Okay, you know, Susie Smith in the next town over is going to come to your house too if you'd like, because she can help you through it.

You know, just that more official mentorship, if you will. You came from corporate, I've been in corporate. In corporate, when you start a new job, you're assigned a mentor, but we are assigned a new job. 

Jaclyn Greenberg: Many new jobs. Many new jobs. And also learning how you can blend those worlds too, because I've learned to say no to some of the things.

I don't want five pieces of equipment. And of course, some [00:24:00] things are absolutely necessary. We had the feeding tube pump for a long time and I couldn't stand it. The thing would beep in the middle of the night. It would make a mess. And it got to the point where whatever he was getting overnight, I could bolus in the morning.

I said, I'm getting rid of it. I can't stand it. 

Jessica Fein: So just explain for the listeners who don't know what that means. 

Jaclyn Greenberg: So my son has a feeding tube. He got it when he was three. And the feeding tube is a little button in his stomach and I attach a little tube and there's a syringe that I can pour formula in, similar to baby formula, but it's just got more calories because he's older.

And there's a pump that you can hook up that gives him just a very little bit of drip overnight so that by the time he wakes up in the morning, he's had a full dose. That never worked for him. For some reason, he just didn't stomach it. But he could stomach a bolus feed, which is just a gravity feed. Just give it to him in maybe five minutes or so, instead of eight hours.

The pump just drove me nuts, because I don't deal [00:25:00] well without sleep, and I couldn't deal with the thing beeping and making a mess in the middle of the night. So going back, I think it's just, as a mother, you know your child the best, and you know what works. Doctors know what they know, but in my mind, there's some wiggle room, and it's like, It's asking the questions, understanding what your options are, getting different opinions.

We saw four neurologists, four orthopedic surgeons, you know, we really wanted to make the right choices for my son. And a doctor is only going to see your child for maybe an hour, what, every quarter at the absolute most? You are with your child all the time. 

Jessica Fein: That's interesting to me because I always found that the doctors involved would say, You know your child best.

Like, I feel like they got that. They understood that in my daughter's care. Did you feel like they were saying, No, no, no, we know best? 

Jaclyn Greenberg: I felt like they shortchanged him. When I bring him to an appointment, they [00:26:00] wouldn't talk to him, they would talk to me, which of course they have to talk to me. But I wanted them to acknowledge that he is understanding what's happening.

So my son, when he goes to a place that he doesn't want to be, will throw his head in his lap, because he can't run away, and he can't really yell, and he's not gonna cry or cause a fuss. Now at home, he cries and causes a fuss because I'm his mom, but in a doctor's office, he won't do that. He'll throw his head in his lap, which means I'm bored.

I don't want to be here. 

Jessica Fein: You’re like me too. I’m bored and I don't want to be here. 

Jaclyn Greenberg: Exactly. But a doctor will look at him and think, Oh, he doesn't understand anything. Or, oh, he has no control over his body. When at home, when he's motivated, he will stand up very tall and verbalize and walk towards things. It's exhausting for him to move.

So he only moves when he's motivated and wants to move. And that is not in a doctor's office. So I have found over the years that they will shortchange him, or really not understand. He's always listening, and he's always tuned in, but you can't tell by his body [00:27:00] language that he's listening and tuned in, and that took me a very long time to understand.

About my own child, I think it wasn't until he was three or four, I got upset because he was in a concert at school, a winter concert, and all the other kids were waving bells, and, and maybe doing a little dance, and my son sat there with his head on his tray, When he wasn't like that other times or at home and one of the occupational therapists said to me He's taking it all in he's listening.

He's overwhelmed and that was exactly what was happening He was overstimulated and he was overwhelmed and he's very different in our home. He's very engaged with us And the world was a bit much for him when he was younger and he's better with it now, but a lot of people will not give him enough credit, including medical professionals.

And that's been frustrating for me. 

Jessica Fein: I understand. I know that one of the things that you write about and we've spoken about is this issue of navigating the system and you and your husband were in [00:28:00] corporate and you're educated and you had trouble. Tell us a little bit about that. 

Jaclyn Greenberg: Yep, so my husband and I have five business degrees between the two of us.

We both were in corporate for, I don't know, ten years before we had children. And we are still, my son is 12, still struggling to get him what he needs. It is time consuming, exhausting, and confusing to get him any of it. The van, the house You know, if money was not an issue at all, we would just straight up pay for everything that we need, but who has that freedom?

All of the systems are very different, the paperwork is excessively time consuming, and actually, very often, I will punt to my husband, because he has a little more patience for that than I do. I will get frustrated, even with certain medical professionals. So, there are very few doctors that I can take all three of my kids to, but the dentist was one of them.

And one day I called, it was probably in [00:29:00] 2021 or 2022 when we were still monitoring COVID symptoms before we would go for a checkup. And I called and I said my youngest, which is You know, not my disabled son. I said, he has the sniffles. I don't know if you want me to bring him in. I don't think he has COVID because my middle son had a seizure last week and they did a COVID test and he was negative.

And later that day, the office admin called me and she said, we'll see your younger son with the sniffles, but we will not see your son who had a seizure a week ago. Now that phone call was on my birthday. I had just gone out with my husband to celebrate. I have not been good about celebrating my birthday for the past 14 years, so I was kind of relaxed, and that triggered me for all of the frustrating situations I've had.

She struck a nerve, and I got upset, and raised my voice on the phone and said I would really love to speak with one of the dentists. Somebody called back later, and I put my husband on the phone because I knew that I had reached my limit. [00:30:00] He asked if a letter from the neurologist would suffice. They said yes.

We got the letter, sent it the next morning, and then I got a termination letter from the dental office saying that they would not see any of my children anymore because I had raised my voice on the phone. 

Jessica Fein: Wow. Okay, so one of the things that you really had to learn over the course of this journey was not only about advocating for your son, which was something that we all learn when we become parents, but boy, do we learn it to a different degree when our children are disabled.

But you also had to learn about advocating for yourself. 

Jaclyn Greenberg: I've had to learn how to take a step back when I get upset because Obviously, being angry doesn't do much for any of us, but when you're constantly dealing with red tape, and it was not legal for them to say they wouldn't treat my son because he had a seizure a week earlier, and I did call the ADA, and we did find out that that was not correct.

However, they were legally able [00:31:00] to cut their relationship with us because I got upset. In that case, I kind of shot myself in the foot because now I'm scrounging for a new dentist and I ended up calling probably 20 trying to find someone that I felt would be good with my son and then my other two end up getting dragged there as well because I'm trying to streamline as much as I can.

If I know someone's going to be good for my son then I know that they'll be good with my other two. So I tend to just lump them together as much as I can. Yeah, start with that, 

Right, so I probably spent a few days trying to find a replacement, and realized at that point, I'm entitled to my feelings, but I need to channel them in a way that doesn't make life harder for myself, too.

I had a harsh lesson in that experience. It's very frustrating and I think my husband and I just kind of play a game of ping pong all day. I'm burnt out, now you take it. 

Jessica Fein: I'm so aware of how [00:32:00] lucky to have that person to play ping pong with and what in the world do people do when they're solo in this kind of thing.

How did you move from, you said you were type A, you're in corporate. How did you then move into writing and advocating? 

Jaclyn Greenberg: So I very reluctantly quit when my youngest was seven months old. My job was more demanding, and so was my home, and we were just able to get by on one income. So I resigned and thought it would be temporary.

It ended up being six years. And then when my youngest started kindergarten, we had a pandemic six months later, so it ended up being 10 years. So I was home for six years with the three of them and really just frustrated with the lack of accessibility and inclusion in so many areas of my life, just trying to get my daughter to gymnastics class and realizing that the waiting area is up a two flights of stairs.

And I have two boys, and at [00:33:00] that point, they were little enough that I would actually put one on each hip and carry them up the stairs. You know, I may do, but there were a lot of different situations. There was one time, and this was my one HuffPost article, where I took the three of them to Walmart to buy.

I was so tired of dealing with the turnstile of therapists in my house, and I wanted to just do something. Like a normal mom, and I took them to Walmart to buy birthday decorations for somebody's birthday. And decided to use the handicap, the accessible parking placard for the first time. And someone called the police on me.

Because I was using a double stroller for the boys, and it wasn't obvious that my son was disabled, and a police officer approached me at the car. Just so many situations that frustrated me, or made me angry, in trying that he needs with doctors and trying to find ways for him to be in the community and realizing that all of the activities are for my older daughter or younger son, but there's nothing for my middle child [00:34:00] and I'm just dragging him from place to place to place to sit there while my other kids participate in activities.

A few months after my youngest started kindergarten, I took a memoir writing class and started sharing some of these moments that were kind of burning a hole in my brain and, and learning how to express those times because I didn't feel like even friends and family understood everything we were managing and that was really difficult for me to feel like there's this whole part of me that friends and family just have no idea exists and I don't think they really even want to know it exists.

That I kind of had to keep it bottled up in a little area. Now, and I had been in therapy for, I mean, since, before my son came home from the NICU, I started therapy. So it's not like I didn't have some place to share this, but I still felt like there was a lot there that I wanted to express, and that I wanted people to understand, and I wanted to connect with other people who had had similar experiences.

So I took a memoir writing class and started to learn how to write. And I just fell in love with it and started learning [00:35:00] how to express these different moments of frustration and trying to make sense of them. Trying to rewrite them into service pieces so that there's a takeaway instead of just I'm angry and frustrated, spinning it around so that people can do things differently, just so that me and everybody else, that we don't have to feel like we live in completely separate worlds because that's what it feels like.

It's one thing for me as a mom, because I can walk away and live in one or the other, but to know as a mother, that my child is always in this separate world. And what are we doing in the community to include all of these people? We're not doing nearly enough to include. These children in the world and be accepting of them and teach people that the societal Give and take of a conversation Is going to be different for different people and that it's okay to be uncomfortable and it's okay to give someone a little space to get to know you and to smile and to find ways [00:36:00] to include other people because It doesn't only impact my son.

It impacts everybody who loves him. It impacts our whole family and it's hard for me to relax You And be happy, and do things for myself, when I know that my son is regularly left out. And that applies to everyone else in my home. I'm not leaving him home with a nurse. I'm not finding someone to hang out with him here.

I want him to experience all the things to the best of his ability and as much as he's interested in doing it. I'm not going to push him to do things that make him uncomfortable. But I want to give him that opportunity to make a choice. If he likes something, he should be able to do it. 

Jessica Fein: Can I give you a standing ovation?

I’m like, “Yes. Yes. Yes." Okay. So if somebody comes to you, maybe they're newly diagnosed, maybe they're in it and feeling like they don't have the business degrees and they don't know how to navigate. Somebody comes to you and says, I don't think I can do it. I don't know how you do it. What three pieces of advice would you give to them?

Jaclyn Greenberg: You're not going to figure it out overnight, so be patient with yourself. Slowly find the resources, use [00:37:00] social media, find the people out there because the odds of them all living in your small community are very slim. So reach out to the wider world. I think my other advice would be, be kind to yourself.

Take the breaks when you need to. There were many weeks where it was just too much. Too many doctor's appointments. Too many therapy appointments. Too much time thinking about it. Find things in your life that give you flow away from that. Whatever it is. Pick up hobbies. I'm sure it seems daunting to do that, but I did.

I learned how to crochet. I took piano lessons. Anything. that gets you to feel like you, and that this is not everything that's happening, because you have to still be you and have the strength to help your child. So, find the resources that can give you help if you don't have a spouse, find ways to get that break, because it's important.

And just be patient, because I think I beat myself up so much over the years. trying to control everything, and you cannot [00:38:00] control life. You can only make the best decisions that you are capable of making, and if that was the wrong decision, then try again the next time. We're all trying to do the best for ourselves and our families, and that's all we can do, and taking those breaks and being kind.

I mean, the whole self care thing is kind of overdone and hard to swallow. I joined a community band. I used to play flute in high school. I was pretty good at it. I found a community band a couple of towns away. My husband would take over dinner time on Monday night. I would leave, drive the half an hour there.

Sit, breathe, I had to count measures, I had to look at the conductor, I was forced to sit still for an hour and a half, and I felt like a new person when I left. 

So finding those things that give you that strength back, because as someone once told me, this is a marathon, and it's always going to impact you for the rest of your life, so find the ways to balance everything.

[00:39:00] 

Jessica Fein: Jaclyn, thank you so much for sharing your story with us today.

Jaclyn Greenberg: Thank you for having me. I love talking with you and I'm always drawn to people who have been through difficult situations and can talk about them. So I appreciate that you do this and connect us all with one another. It's very important.

Jessica Fein: Here are my takeaways from the conversation with Jaclyn. Number one, as my mug says, man plans and God laughs. Much of the time, it boils down to how we pivot. Number two, and we hear this one a lot, whatever you're going through, the best source of information isn't necessarily the professionals, it's other people who have been there.

Number three, you know your child best. Number four, assume competence. Nonverbal does not equate to lack of understanding or awareness. Number five, you're entitled to your feelings. But it can help to channel them in a way that doesn't make life harder for yourself. Number six. The societal give and take of a conversation is going to be different for different people.

It's okay to be uncomfortable, and it's [00:40:00] okay to give someone a little space to get to know you, and to smile, and to find ways to include other people. Number 7. Be patient with yourself. Number 8. Be kind to yourself and take breaks when you need to. And number 9. Find things to do that make you feel like you.

Thank you so much for listening to this episode. If you're enjoying the show, please Sign up for my newsletter, The Fein Print, on my website at jessicafeinstories.com. That's Jessicafeinstories. com. Have a great day. Talk to you next time.