A Special Story

The truth is, parenthood rarely turns out how we expect. Today, I'm happy to introduce you to my friend Jen. I met Jen over twelve years ago--long before my motherhood journey began. She's the mother of a son with special needs and twin daughters. Jen's love and tenacity have always inspired me. I'm thankful she is sharing an intimate look into her parenthood journey with us today.

Show Notes/Links:

Get in touch with Jen by emailing me: [email protected]

Hi, there it's episode 198. And today I'm sharing a very special story with you. I'm joined by my dear friend, Jen, who I met on Craigslist about 12 years ago. And she's giving us an intimate look inside of her parenting journey. Hi, this is Denaye. I'm the founder of Simple Families. Simple Families is an online community for parents who are seeking a simpler more intentional life. In this show, we focus on minimalism with kids, positive parenting, family wellness, and decreasing the mental load. My perspectives are based in my firsthand experience, raising kids, but also rooted in my Ph.D. In child development. So you're going to hear conversations that are based in research, but more importantly, real life. Thanks for joining us.

Hi there. Thanks for tuning in. I'm excited to bring you this story today. Next week, we're getting ready to launch the mental unload. The mental unload is a seven-day program geared at tackling your mental clutter. Many of us, maybe most of us struggle with the mental load of motherhood. If you want to join us on this journey to jumpstart your self-care, go to simplefamilies.com/unload. You'll get all the information and how to sign up there. I generally run this program three times a year and each time I run it, I try to focus at least one or two podcast episodes on the topic of the mental load. And this time I was trying to brainstorm who would be a good guest, who would bring some new, insightful perspective on the mental load. And that's when I thought of my friend, Jen, who I've been more or less out of touch with for the past 10 years, but she's one of those friends that it doesn't matter how much time passes you can pick up right where you left off.

So I'm going to tell you a little bit more about how I met Jen and got to know her and more about her story. But first here's a quick word from today's sponsor. Today's episode is sponsored by Cultural Care. Cultural Care is an AU pair agency, which is an agency that links you with AU pairs. If you're not familiar with what an AU pair is in a pair is a young adult from overseas who comes to live with you and your family on a legal visa. For up to two years, they provide childcare in exchange for room and board and the opportunity to become part of an American family. And I will say that AU pairs have truly become part of our family. We've been participating in the AU pair program for the past two years. And this type of flexible childcare arrangement has been amazing for our family.

Not only has it been such a lovely and enriching experience for our family, but having an AU pair in our area costs about a half of what a nanny costs AU pairs can provide up to 45 hours a week of flexible childcare. That means if you want to use your hours early in the morning, late at night on the weekend, there's a lot of room to change it up, to fit the needs of your family. As a host family, we pay a weekly stipend along with room and board and $500 a year towards college credits, which is required as a part of the program. If you want to learn more about the program, you can always reach out to me directly to ask any questions. I love talking about our experience, or you can go to simplefamilies.com/aupair. That's A U P A I R again, that's simplefamilies.com/aupair and the code "PC simple".

We'll let you waive the $75 registration fee. If you're thinking ahead to summer childcare now is a great time to start looking into this all right, back to today's episode. So I met Jen back in 2007, and at the time I was in my early twenties, I had just finished my master's degree in social work. I was working full time on my LCSW, my clinical licensure as a therapist, a child and family therapist. So the reputation for social worker as being a highly underpaid profession is true. And as a result, I was looking for a part-time job to supplement my full-time income at the time I was young and single and living alone. So I got on Craigslist and I searched therapist because that was my job at that time. And I thought maybe I could find an additional part-time job doing therapy and Craigslist was where you went, where you were when you were looking for that kind of job back in 2007, I guess, to some degree, probably still today.

And I found a link that said ABA therapist, and I had no idea what that was. I knew that it was some kind of therapy for young children. So I emailed and I got a response from Jen and she said, yes, we want to interview you. So I went to her house and I met with her and her husband and her then almost two year old son. And when I arrived, she explained to me that he was non-verbal and they were starting an intensive intervention program called ABA applied behavior analysis. I would be one of just many therapists that he would be working with in this program about five hours a week in total, he had more than 40 hours a week of therapy at the age of two, which is typical of an ABA program for anyone not familiar with applied behavior analysis. It's the type of therapy that works to improve social communication and generalized learning skills.

It often starts in early childhood, many experts consider ABA the gold standard for treatment with autism and other kinds of developmental disorders. So the kid was cute and I needed the money. So I said, sign me up little did I know that I would come to fall in love with that little boy and Jen and her husband would become more than employers to me. They would become friends. I felt like I had a front-row seat watching Jen work through her motherhood journey in these early years. And if I had to use one word to describe her, it would be tenacious. I remember watching her and thinking, this is exactly how I want to be as a mom. I want to be that dedicated and that loyal and that immersed in the experience. I remember her coming and leading all of our team meetings with the other therapists.

She would have her head down vigorously taking, and she would execute every single thing that the consultant told her to do to a tee, back when I was 23 years old, I was inspired by seeing how hard she was working as a mother. But now that I'm 36 and I have two kids of my own, I can't help, but thinking, what was this really like for her to go through this experience? Because as a mother, I have my hands full as it is, and now viewing her experience from a different mindset as a mother, I think about it less aspirationally and more from an exhausted point of view because gosh, how exhausting that must have been. I thought to myself, how mentally, emotionally and physically draining that must have been. So I wanted her to join me, to share her story, to give an inside, look on what life looks like, raising a child with special needs, and then raising twins.

On top of that, I know that so many families out there listening are also raising special needs children, and you all have a very beautiful, unique journey of your own. And if you're not raising a special needs child, you surely know someone who is. And I think hearing the inner intimate experience of someone who's been through this journey will help bring you empathy because Jen's kids are getting older. We've agreed that it's in everyone's best interest to stay relatively anonymous. So if you have questions or comments or feedback for Jen, email those to me, [email protected] and I'll make sure to pass those along to her. Thanks for tuning in. And I hope you enjoy this conversation.

Denaye Barahona: Hi Jen, thanks so much for chatting with me today.

Jen: Thanks for having me. It's so good to catch up with you. We really haven't talked much over the past. Gosh, about 10 years. I know it's been so nice to reconnect with you. You are so important to us all. Well, you and your family holds such a near and dear place in my heart. And I'm so happy to have you tell your story today. I think that bits and pieces that are gonna resonate with so many people,

Jen: Well, I hope that is the case, whatever I can do to help someone else.

Denaye Barahona: So tell me about you a little bit. Who are you? How old are your kids? What do you do?

Jen: Who am I? So I have three children, a 14 year old son and twin 11 year old daughters. And I am a lawyer. Well, I sort of a recovering lawyer. I'm now a college professor. But I practiced law for many years until our son was about two. And at that point,hen his challenges became more apparent, I took a leave of absence and ultimately resigned from my law firm job. So I could devote my time to trying to meet his needs at home. And then in the last about six years, I've gone back to work teaching and I've absolutely it. And so here I am.

Denaye Barahona: Great. Thank you. Now I want to rewind and talk a little bit about your earliest days of motherhood, really, I guess, pregnancy. And when I knew you, I met you when your son was just turning two. So I didn't know you throughout these early years and never really asked these questions. So I feel like I'm hearing a lot of this for the first time too. So how would you say your experience during your first pregnancy was, what did you anticipate in motherhood?

Jen: I had no idea what I was in for quite frankly, like, I guess all first time mothers. Right. I, I sort of expected, I idealized, I think much of what the experience would be like, I anticipated, I mean, it sounds sort of obnoxious to say in retrospect, but I've evolved since, but I was thinking, Oh, like, which, which prestigious schools will he go to? You know, I, I sort of assumed he would be everything I, you know, had dreamed about with all the promise and skill set and abilities in the world and that the world was his. So that was always my hope and what I sort of expected going in.

Denaye Barahona: And you were in your late twenties, right?

Jen: I was 28 when I had him.

Denaye Barahona: Okay. And you and your husband are both Ivy league grads and it's, I would, I would venture to say that most people who have achieved a lot in their careers and in their academic life, that they would expect that of their future children too. I don't think that's unusual.

Jen: It's, you know, it's, I just hadn't contemplated anything else. And it sounds, as I said, terrible, it sounds obnoxious. All I can say, is it wasn't with any bad intent or bad feeling, it was just completely oblivious to the realities of the world. It's humbling to be a parent for sure.

Denaye Barahona: It is. It is absolutely. So he was born. And what time of the year was he born?

Jen: In the fall.

Denaye Barahona: In the fall. Okay. So how was your experience in those first weeks and months throughout the holiday season?

Jen: To be honest, it was brutal. I had a very hard time adjusting. I remember feeling incredibly challenged by the sleep deprivation. I remember a couple of weeks after he had been born, my parents came over for dinner. They live locally as well, which has been a tremendous blessing. And my father looked at me and said, you know, I think he may have colic. And I started to cry, no doubt you know, partially because of the hormones and the exhaustion. And I was just very emotional at that time.

Jen: But I was thinking if he has colic, that is the worst thing the world, because it means he's going to be screaming for hours a day for the next few weeks. And I don't know how I'm going to get through the days. So I felt overwhelmed from day one, looking back, I would assume I had at least some element of postpartum depression that I never treated. I didn't really put it all together at the time, but I, I struggled and I never, I felt anxious and not totally natural and he was difficult. He cried a lot. I think he was in sort of a state of sensory overload much of the time. So we were constantly worrying about overstimulating him because it set him off. It just didn't feel quite right to me.

Denaye Barahona: So did he continue to cry past the typical age of kids with colic?

Jen: Well, it's interesting. He definitely had colic. So, you know, after the six week peak of, you know, of colic, I think some of that died down, but I remember he cried very easily over new experiences. I remember, I don't know if this is too late in the chronology for you if you want to stick with earlier. But I remember it as one year checkup, the doctor asked me if I had ever given him a cran to scribble it. And I said, no. She said, well, get him a cran. He needs to scribble. So he and I went to buy Crans right after the appointment. Cause we didn't have any, he was our first child. We didn't really use Crans, and I gave him a cran and I was so excited to see, you know, the artwork he would produce. And he took a look at the cran and screamed and was completely overwhelmed by it. And I'll just never forget it. And I just put the Cran away. I didn't want to freak him out again.

Denaye Barahona: You say that was the first point when you really started to get nervous or did you already have that?

Jen: I guess, yeah. I was nervous before then because he didn't have any consonant sounds, you know, there are all these milestones they're supposed to meet. So he didn't have consonant sounds at eight months and they sent us for a hearing test and I knew in my heart, it wasn't a hearing issue. But I remember going to the hearing test praying that it would turn out that, so that that's what would explain his lack of sounds. And of course his hearing was fine. So I knew there were little things along the way, at one year he wasn't pointing. And so as time went on and the gaps sort of widened between what he was doing and what his neuro-typical peers were doing, we got more and more concerned.

Denaye Barahona: What was your pediatrician telling you at that point?

Jen: Well, I remember at his 15 month appointment, our pediatrician said, okay, you know, he has until 18 months, sorry to have five words. And if he doesn't have five words by 18 months, you're going to speech therapy. So I was working so hard with him trying to get him to repeat. And of course not, not a word by 18 months, actually, not a consonant sound by then. So then we were sent to speech starting at 18 months.

Denaye Barahona: So I think it's interesting that you said you were working hard with him because that's my early memories of you is being the most tenacious, hardworking mom that I've ever met. And I can envision you saying, let's do this right? You need to learn these and sitting down and trying to teach him. And when you couldn't do that, it must have felt, I dunno, how did it feel?

Jen: It felt hopeless and horrible. And I felt like a failure and I didn't understand what was going on. I just couldn't wrap my head around it.

Denaye Barahona: Did you blame yourself?

Jen: So it's interesting. I've spent considerable time thinking about this. I was smart enough. I think to know that his challenges themselves were not my fault. I can't, you know, parents of special needs children can't blame themselves for their children's special needs that just defies any sort of rational thinking or logic. But what I blamed myself for was how little I was enjoying him. I felt that I was a terrible mother because I wasn't having fun with him. I found him really hard to be with. And I loved him with every ounce of my being. And I was there to comfort him and to love him and to hold him and distinct to him and read to him, but I couldn't play with him. So I couldn't have like fun time with him. And when we were together, a lot of it frankly, was sort of waiting for time to pass by and waiting for bedtime. And I blamed myself for feeling that way.

Denaye Barahona: Is that something that you ever were able to share with your husband or anyone else in those early years?

Jen: My husband was very similar minded, so I've always been very safe with him. He and I have really shared all of this from pretty much day one. We both were sort of shell shocked by how hard parenting was. And remember, this was our first child. So we never had sort of, if a normal parenting experience even exists, we never had it. I don't know that it exists actually, butwe never had an easy time being parents because from day one of being parents, we were met with our son and all of his challenges and it really was very difficult.

Denaye Barahona: So that first year was just probably a confusing time. At what point did you start? Was it 18 months when you decided to seek out other types of professionals for opinions?

Jen: Well, so at that point we did speech. We did OT. He made virtually no progress and I was really starting to panic then. So at that point, I remember I was still working for my law firm at the time. And I remember going to work one day and breaking down to my boss,uwho was, I was very friendly with. And I said to him, our son has these developmental delays and I'm freaking out and think I need to take a leave of absence and I don't know what to do. And he said, first of all, you take whatever time you need. But second of all, you need to call my friend, here's her name and number. She has a child with autism and she put together this home-based program for him that changed their lives. So if you do nothing else, just please call her and whatever she can, you know, impart to you would be great.

Jen: And I thanked him and although I was very private about all of this and somewhat isolating myself a little bit from my peers, because I just felt that no one could understand what we were going through. And I still valued my son's privacy so much. So, it didn't feel comfortable sharing. I called this woman and she met me at a Starbucks for over an hour and told me about ABA and shared with me, her consultants, contact information, and offered to help me set up our house for this program. She was phenomenal, just an amazing kind generous woman.

Denaye Barahona: So did you jump right in, because tell us a little bit about ABA. This is not like one hour a week, drop a kid off at therapy, right?

Jen: Yeah, Yeah, no, this is very intense. And it's funny, this I'm normally someone who researches things pretty thoroughly and tries to go in with eyes wide open. This was the most impulsive decision I've ever made. I spoke with her, I called the consultant. I set up the initial meeting and never looked back. And I remember I sat my husband and parents down that night and I said, listen, I just want to let you know, this is what we're doing. You know? I said, I'm not really open to any like criticism of this.

Jen: This is what worked for this woman's son. This is what we're going to do. It's the most intensive program available. There is no time to waste and once a week speech just isn't cutting it. So, here's what we're doing. And we're all in this together as I was dictating to them, what would be happening? And I think they all know me well enough. They knew that it was not the time to question me. So, I really just went in knowing very little, but trusting it completely. Totally bizarre.

Denaye Barahona: So from that point that you met the woman in the Starbucks to the time you got your ABA program going, how much time passed?

Jen: Oh, very little. I mean maybe two months. Like almost nothing. I mean, we were on it. I'm yeah. I met with a consultant. She gave me a list of everything I had to buy. She actually went to Toys R Us with me, the consultant and loaded the cart. I think we had two carts fall. I mean, you may remember absolutely every stupid thing in the universe, you know, to help our kid as any of us would, yes. I remember spending an ungodly amount of money in Toys R Us and, you know, it felt good because it felt like something within my control, but I could do.

Jen: So, I threw myself in to doing all the things I could to help him. So that meant hiring this consultant, which of course I did hiring instructors and setting up the ABA room in our house and doing all of the payroll and scheduling. And at that point I took a leave of absence from my job and devoted myself entirely to managing this program. It was very intense. I guess we started when he was two, I think he had just turned two and we were doing 42 hours a week. It was insane. I mean, other than sleeping and eating, he was in ABA.

Denaye Barahona: So that was about, was it like four hours in the morning, four hours in the afternoon, or?

Jen: I remember you had those shortest sessions cause you had to go to your real job after. So I still remember you came on Tuesday and Thursday mornings and sometimes could stay till 11, but sometimes you had to leave by 10 30. So I remember those were the earliest ones. So, you did two or two and a half hour sessions and those were the quickest, but the longest would be about four hours. And we did every weekend too. It was incredibly intensive.

Denaye Barahona: Yeah. And I think about managing that schedule, I think, first of all, at my own mental load around parenting and the things that I have to manage, but to imagine to add that to your plate, it must've been a lot, but in some ways, did you feel like it gave you something tangible to do task oriented to do, to help Him?

Jen: Yes. It, like I could do something, you know, I hired, I fired, I did payroll. I did, unfortunately, you know, I did all of these things. And it was something that I could accomplish felt as good as any of this can feel.

Denaye Barahona: You felt like you could do your job and do it well.

Jen: Yes, Exactly.

Denaye Barahona: So around this time, what was going on with you socially? Did you have friends that you spent time with? Did you get out much? How, where were you at emotionally?

Jen: I was not in a good place emotionally. I have very good friends, but my, my friends, my close friends were those like older friends from high school, from college who don't live locally. Somehow it was safer to confide in them because they weren't local. I had a very hard time. I sort of isolated myself from my local friends at that point, cause I just, it was too painful. I couldn't get together with them, with the kids A he had ABA. So when it works schedule wise and B, I would feel really bad comparing him to their children and watching, you know, a typically developing child and feeling really devastated about my own.

Denaye Barahona: So did you stay away from playgrounds and all kids zones where you might encounter other kids?

Jen: I mean, we, occasionally we went to playgrounds a little bit. We didn't usually go with people, so we didn'tyou know, at that point he didn't really have neighborhood friends because he was still so young and we spent all his time in ABA. So we didn't really have a lot of friends. We'd just moved to our neighborhood, to the house that you had seen. So, I just really didn't make a lot of friends at that point with kids the same age. I just had no interest. I couldn't do it.

Denaye Barahona: I imagine it was hard to just explain what was going on in your life to your friends and even to your extended family, anyone else, and you have always avoided a diagnosis. So how would you explain what your life looked like if you had talked to an old friend during this time?

Jen: I have very good old friends with whom I'm very close. So for them, I could explain it. Even without a diagnosis, I told them he wasn't talking. I told them he was still in no sounds. I told them he had all of these delays and there's this home program that would help him across all of these different domains to develop these skill sets. So that's what I did. And they were of course, incredibly loving and supportive. So that's how I explained it.

Denaye Barahona: But so it was easier to rely on the network of people that you felt comfortable with and that you could really trust, rather than building new mom, friends with savings.

Jen: Yeah. I really wasn't ready at that point to build new mom friends, because also, you know, when you build, when you make mom friends, it's because your kids play together. Yeah. It was two or three years old, not playing with other kids, not going to school yet. There was no opportunity for that, which in a way made my life easier because it wasn't something I had to contend with at all.

Denaye Barahona: So tell me a little bit more about avoiding a diagnosis and how you've never really felt like you wanted to put a label on him. What are your thoughts about that?

Jen: You know, I will never forget a speech therapist who saw him when he was two years old, loved me in the eye and said to me, he is never going to talk and you need to plan for a group home. And I fired her on the spot and spent a long time crying after that, but he has proven her wrong on both counts.

Jen: I mean, the kid never stops talking and he's not going to end up in a group home. And I realized that there's so much that we still don't know. And for us a diagnosis, wasn't critical because we weren't pursuing any public assistance. We weren't receiving, you know, public, you know, we weren't getting an IEP because he was always in private school. We were doing private therapies, not public therapies.

Denaye Barahona: And at this point, ABI was not covered by any insurance covered. And it is now though by many. Right?

Jen: Which is amazing. Yes. So a lot has happened since which is so important and so wonderful. We were not so lucky. So we paid every dime out of pocket and it, it was incredibly difficult. We were still relatively early on in our careers. So that was a huge, huge challenge for us. But that's, you know, there was never any doubt in our minds that our money was to be used for our children. That was it that, you know, we were very aligned on that point.

Denaye Barahona: So, I remember my early days, I was one of your first therapists and the very early days, the first training that we did with the consultant, learning what we were going to be doing, how exactly we were going to be teaching him to talk and to play. And he made incredible progress. I mean, would you, do you remember it that way or is that just how I remember in my mind.

Jen: I do. He did. It was absolutely. We always say ABA saved his life. It just, it did. And he loved it by the way.

Denaye Barahona: Yeah. And we loved him and we still do That. Yeah. And I think that when it was really rewarding to me to come and to do that work because I could see every single day I could see the progress that he was making. And I actually heard in recent years that there are people, even though, I mean, there is a giant book full of treatments for kids with developmental delays. And ABA is just one of many. But there's people who are critical of ABA who say that it is a sort of forces kids to change into something that they're not naturally supposed to be. Have you heard any of this criticism?

Jen: Oh yeah.

Denaye Barahona: What do you think about that?

Jen: I don't agree. I think it's a great thing. I mean, you know, I think my goal has never been to change who my son is. My goal is to position him to be as much as he can be ABA hasn't changed him, but it taught him skills and it gave him confidence because confidence comes in my view from competence and from skill development. So developing oneself can only be a good thing in my mind if he hadn't had ABA, I cannot imagine what would have happened. I don't want to imagine it, but trust me, he's very much himself for better or worse. He is not a robot. He's not, you know, there's no evidence just in raising him that it had any sort of, you know, adverse effect and it wasn't punitive. There was nothing like abusive about it. He loved it. It was, as you recall, completely based on positive reinforcement.

Denaye Barahona: Right. And lots of play, lots of Play 100% play-based.

Jen: So it's been good for it. What's good.

Denaye Barahona: Once you started seeing the progress, did you start to feel better about everything?

Jen: I mean, yes. So that's an interesting question. Yes, of course, because that's exactly what you want to happen, but as kids get older, the gap still widens as you know, so it was a little hard, it's been hard over the years to think, okay, we're investing everything we have and you know, he's working so hard and he is making progress, but will he ever get to where we want him to be? You know, what is his potential?

Jen: How well awful this make him.

Denaye Barahona: Is he going to reach the idealizations that you had way back in pregnancy?

Jen: That's exactly right. So ultimately our expectations were never met and won't be met, but yeah, I mean, progress is so important and I think it's important, you know, it's helped us sort of reconceptualize what all this is for and what our goals for him should be and who he actually is. And not whom we sort of imagined that he would be.

Denaye Barahona: Yeah. And so you did ABA with this consultant. I got married and then I left shortly afterwards after, and, but you moved on to another consultant after I left. Right?

Jen: We did. And for that, I just, I wanted a different perspective. I think the first consultant was very good, but I think we sort of outgrew her a little bit. So I wanted to do a little bit more to have a program that was a little more natural. So we employed a consultant. Who's actually, the reason we hired her is that she's a speech therapist and ABA trained consultant. And I liked that combination.

Jen: She had background in both disciplines. So we embarked on a verbal behavior program, which is very similar to ABA, but a little bit more emphasis on generalizing the skills to a more natural environment. So we did that and a lot of our instruction instructors just continued with us, but got trained by her. And so,we did that and then he graduated and she said, it's done, he's met all the goals. So it was amazing.

Denaye Barahona: So the goal of ABA in many ways is to start early around two, no later than three, and then get kids quote unquote caught up so that they can go to kindergarten and be on track with their peers. Right. So how did that all pan out once he graduated from ABA?

Jen: So, for the most part, when, okay. Kindergarten, he went to a mainstream, small private school. He had a shadow that we hired and we were still actually working with the VB consultant at the time. So she came and sort of, she trained the shadow.

Jen: She met with the teachers and stuff and, and he did very well. I mean, he, he had no academic problems at that point, the extent kindergarten as any academics, but he could, he was reading, he was fine our concerns at that point were more social that the shadow is there to sort of help him along with that. And he made a friend, a little girl who's just so sweet. So, you know, the kids were nice to him and he was happy. First grade was harder because the academic demands got greater. And at that point we realized there were some learning challenges that we had not been aware of.

Jen: I mean, I remember in kindergarten he read a book to his class and everyone thought he was such a genius because he could decode very well. And then in first grade we left midyear because the teachers felt they couldn't meet his academic needs. He had a lot of trouble with reading comprehension and still does to this day. It's his biggest challenge academically. So we sent him to a more specialized school at that point and for the next few years so you know, he wasn't all caught up. I think ABA dealt with a lot of the early skills that you hope children develop and the play skills, and the you know, some expressive and receptive language skills. But it didn't address the academic needs. And quite frankly, it couldn't have anyway. So it wouldn't have been developmentally appropriate at that age.

Denaye Barahona: Yeah. So. I just realized that we missed a very big life event, which was the birth of your daughters. So let's rewind. Now, I'm thinking about when you talked about the consultant, taking you to toys R us and telling you, buy this, buy that, and to get all the right toys to have for him to be prepared. And she also told you to have a sibling, right?

Jen: Yes. They were basically concede that night because there was nothing we wouldn't do. You know, when we were told by her, What did she tell you? What was the rationale like you need to get pregnant immediately. He needs a sibling. I said social reasons is that for social reasons, the peer model, even though there'll be younger, well, it will be younger. We didn't know it would be twins. That was sort of a shock. So, really I think my, my husband came home that night. I'm like, guess what? Let's go. And I got pregnant immediately and it was twins. Twin girls.

Denaye Barahona: You had reservations. It sounds like before going on to get pregnant for the second time. Definitely. I, I remember thinking this was so impossible. I'm not sure I can go through the whole thing again, quite frankly, but I knew I wanted more than one child and I knew I wanted at least one sibling for him. So we knew we would have another one, but, you know, we didn't, we weren't actively thinking about it at that time. Our girls were born just, just after he had turned three. It's not like we waited that long. But you got a little push. Yeah.

Denaye Barahona: So what was that like introducing twins into your already full schedule?

Jen: To be perfectly honest, I have blocked that their first year out completely. I do remember thinking that even with twins, it was easier and more natural than it was had been with just one, I remember feeling incredibly connected to the girls. I remember feeling calmer with the girls and they were frankly easier, even though there were two of them. So, they were sort of, you know, a blessing from minute one.

Jen: And he, he was still full-time in his ABA program, so it didn't really, they didn't really mess with his schedule. And at that point we hired a full-time nanny to help with the girls, because I didn't want him, I didn't want his schedule or his life to be complete up people. So even though I was home, I was very busy, sort of with, with all three, but we had help and the nanny really just helps with the girls. I was still available for all of his stuff.

Denaye Barahona: Yeah. And it still was taking a lot out of you. It was kind of like your full-time job. I imagine.

Jen: It was completely. And I remember thinking, God, I really have no idea how I'm ever going to work again, but I really want to work. I have always loved work. I, you know, I'm, I struggled a lot with those questions as well. You know, when to go back and what to do, I knew I wouldn't go back to a law firm, but I wasn't sure of what to do. So I struggled for a while with that.

Denaye Barahona: Yeah. And, you know, I was thinking about, I was just about to ask you, if you had made any other friends who were special needs moms and thinking about that expression, do you feel like there's a difference between calling someone a special needs mom and saying that you have a special needs child sort of attaching that label to yourself? Do you, how do you feel about that?

Jen: I actually say I have a child with special needs, but I don't know. I don't really get sensitive about that. Although I do think being a mother of one of these children is truly an identity. It just is, it changes you and really profound ways. So I understand when people say special needs moms cause it really is a shift in, in your identity in a, just a really good way. Right. But I don't really care what people say.

Denaye Barahona: Yeah. And I think that if you, anytime you group yourself in one way or another, I think in some ways it could limit your limits, your potential to grow in other areas of view. If you put all these labels on yourself and I know that you're, you're not a fan of all these labels. So I kind of liked the idea of not defining yourself by who your children are and the way that they're growing and their abilities.

Jen: Yeah. It's just tough. I think ultimately you've got to find people who are your people and whether that's people who are in same exact boat as you or not, that's such a personal thing and it will be different for everyone. I have made really, I'm so lucky. I have truly wonderful friends from sort of all different chapters of my life. And some have kids with some issues and some don't. And it's really not about that. It's, you know, our friendship sort of transcends all of that and it's very important. I think the real thing is finding people who love you, who accept you, who support you, who want the best for you and your children and whom you trust not to judge. I think that's incredibly key.

Denaye Barahona: Right? So that, it sounds like you found a lot of value in your outside relationships, but tell me a little bit about the relationships inside your home. Like what is it like managing, I mean, managing sibling relationships is hard period, but what about the managing the relationships between your kids?

Jen: That is a really, it's a sensitive thing. It's really hard because you know, at this point our girls have sort of surpassed our son academically. I mean, they are both,doing very well in school. They have no sort of academic challenges to speak of, at least not at this point. I remember recently the girls are reading the same, a book that they love and then our son brought home the same book. So they're all reading the same book in school.

Denaye Barahona: Is he aware of that.

Jen: Oh Yes. He struggles to understand any of it. And our girls flew through it and loved it. And it's so hard. I read with him at night to try to help him with the book and our girls are, they're like, Oh, we love that part. And it's so like, you know, it's, it's a real challenge. And then what happens is he tries to, I guess, compensate for that by being kind of obnoxious to them. And I get it psychologically. He wants to have some power over them because they have a lot over him. And that doesn't do much for the relationship. So it's, it is not easy. Ultimately of course they all love each other they're for the most part, good to each other, but it's definitely something we're mindful of. And that is a source of a challenge at times.

Denaye Barahona: I imagine it has to be hard to want to praise them and to recognize their growth and achievement, but at the same time, not making him feel any less about his.

Jen: It's really hard. And I, you know, I think that's even in the case of neuro-typical children, you know, you want to honor and praise each child for his or her accomplishmentswithout hurting someone else's feelings, but you also want to teach your kids that it's okay to be happy for your sibling and it's not a slight against you or something did something great. It's really, I mean, it's a lot, there are a lot of dynamics to balance for sure.

Denaye Barahona: Yeah. So have you continued other types of therapies as he's been growing?

Jen: Yes. So right now we do speech therapy really for social pragmatics. He has a reading tutor, which isn't really therapeutic, but it's certainly what he needs. He does. I don't know if this would be considered their, a therapeutic, but he does a one-on-one fitness program every week with a trainer who designs a program, especially for him to develop his core strength and motor planning skills and things of that nature. He's not a natural athlete, so.

Denaye Barahona: Right. And you're not trying to make him into an Olympic athlete by any means.

Jen: Absoulutely not.

Denaye Barahona: So you've had your experience in hiring and firing therapists of all different disciplines over the years. Do you have any advice for finding the right therapist and knowing when to let go, even if it's against their recommendations?

Jen: That's such a great question. A lot of it is about, you know, doing your research word of mouth, but also trusting your gut. We have, we have really, you know, a lot of times, particularly with therapists, it's really all about fit. So, we had people that we've had to fire who were probably just fine at their jobs, but they didn't do well with our son or he didn't do well with them, I should say. And you know, you sort of have to just stay involved with your eyes and ears wide open and be willing to be flexible.

Jen: It's flexibility is the one thing I have learned more than anything. I was not flexible before because everything in my life had always gone according to plan. And I thought, okay, if I work hard enough, there is nothing I cannot accomplish. And when I say parenting has been humbling, that's what I'm talking about. Because for the first time, you know, reason, our son has forced me to be completely flexible and to try things. And when one thing doesn't work, we're not afraid to make a change. And in fact, we look at that as our job. So a lot of it is really just looking at state, looking at progress, looking at personality. You know, if you can't stand a person, you don't want them working with your child. Right. It's just, we fired ABA and instructors on the first day.

Denaye Barahona: Jen: I remember that. Yeah. Cause I was listening when the monitor and she was not following any of what she was supposed to do. So I heard her on the break. I sent her home without apology. I mean, there's just no time or money to waste. So that I view as, as our role really.

Denaye Barahona: I think it's really easy once you're in the flow with something like this to just keep going, it's hard to let go because you know, you're going to have to find somebody else and you're in, it's awkward. Right?

Jen: Yeah. I mean, you kind of have to just get over it though. It's like, you're doing this for your kid and if your kid isn't going to benefit, there is just no point in employing the person. So yeah, I'm pretty ruthless about it. Now, but yeah. I mean, I don't, I don't wanna apologize. You feel bad I guess, but it's, you know, life's too short. There was, I always felt such an urgency to help him that it, it really was sort of a no-brainer to me, honestly.

Denaye Barahona: Yeah. And do you feel like that sense of urgency has faded over the years?

Jen: Oh, what a good question. We've settled into the resignation that there are things that are just really hard for him. So there's no sort of acute urgency anymore because we know what we're dealing with and we've been at it for a really long time. So in that sense, the urgency has dissipated a little bit, but the motivation to help him and to get him whatever resources he needs has not dissipated at all. I would put it that way.

Denaye Barahona: Yeah. So you're still, it's still your part-time job to make sure that he has needs are being well-served and that all of your kids are being served also.

Jen: Yeah, it's sort of no different for him now than for my girls. It's like, that is my most important job, but it takes less time now, you know, now that they're all sort of situated in school and things just sort of go at pace.

Denaye Barahona: How has going back to work impacted your mental health?

Jen: It has done great things for my mental health. You know, I absolutely love what I do and I love feeling I've thought about this a lot. I love feeling like I'm using my education and my training and degree and everything else, but I also love feeling that I'm making an impact on students' lives because there have been times, many times throughout our son's life that I felt that I'm not having enough of an impact or that I felt guilty about not being able to help him in the ways I want to. And I don't have that experience at work. I love connecting with my students. I love advising them. I love reaching them. And it's something that I do very well. And I feel tremendously fulfilled being able to do that. It makes me feel useful and effective.

Denaye Barahona: Yeah. And that sounds like something that you have always strive to do in your family life too, but it's not, it's, it's harder to do in your family.

Jen: And it's harder to gauge, How do you know you're doing your job. All parents feel like they're doing a bad job.

Denaye Barahona: Totally.

Jen: That's like a rule of parenting. You feel like you're just no good at it. So it's much harder to tell, I think it's a longer term proposition and who knows, who knows how we're doing, but at work it's different. And I get the feedback right away and I, I get told, you know, I get evaluated. It's just, it's, it's very good for me.

Denaye Barahona: Yeah. So if you could go back rewind 10 to 12 years ago and write a letter to yourself, what kind of things would you tell yourself to do differently or to feel differently? Are there, would you tell yourself to make any changes?

Jen: That's a really, really good question. You know, I think the most important thing I would tell myself is that it's okay to feel how I'm feeling because I you know, I have struggled. I struggled for years thinking I was not a good mother because of how I felt, because I felt distraught about him, because I felt that he was hard to play with, which by the way, he was like, that's just factual, but I felt guilty about it because I felt that I should really want to play with him. And then I should, it should be my joy to play with him, even though he couldn't play. I felt terribly guilty about my feelings basically. And I acquainted those feelings to being a bad mother. And in actuality, I don't think I've been such a bad mother because I provided everything I possibly could always to him.

Jen: And ultimately we have a very healthy attachment, you know, which is what it's about. I always loved holding him. I wanted to be the one to comfort him. I felt overwhelming love for him. I just didn't love spending all the time, because I felt like it was sort of boring and difficult at the same time. And for years, that feeling really ate away at me and made me feel like a bad mom. And I would have been spared a ton of sadness. Had I not taken that leap, you know? And it felt that way. So I think that's what I would tell my old self that whatever I was feeling was totally okay, and was totally valid and normal. And didn't make me a bad mom because that's what I've struggled most with that guilt.

Denaye Barahona: And I don't think that you're alone in that guilt either. I think there are a lot of parents out there who don't enjoy the time that they're spending with their kids as much as they think that they should. And I think that's a real, a real concern for parents everywhere. And the reality is I don't think we're ever going to enjoy every minute that we're spending with our kids and our kids, the way that they think and the way that they spend their time is very different from the way that we think and spend our time. And in many ways we have to accommodate them constantly when we spend time with them and it is exhausting and it is kind of mind numbing.

Jen: It is. And you know, but when they're not typically developing, there's even more importance placed on that time because you think I need to spend my time with him in productive ways. Right. And if I don't, it's going to make things worse.

Denaye Barahona: That sense of urgency sense of feeling like you needed to fix it.

Jen: I need to fix it. I wasn't able to fix it. And therefore I wasn't doing what a good mother would have done, and that was not fair to myself. And I have learned with the help of a therapist and, you know, many years of sort of coming to terms with all this, that was faulty reasoning. But that's, I think the biggest, the biggest lesson I would have imparted to my, my younger self.

Denaye Barahona: Well, I think that you're a fantastic mother and I feel so lucky to have been able to have a front row seat to your early years of mothering. And seeing you just literally work your butt off for your kids to do the best for them. And I've, I've never seen anything like it, which is why I felt like I wanted to talk to you about this and know what exactly was going on in your head and how overwhelming this must have been for you.

Jen: What I mean, you know, speaking of the guilt, it was, it was hard. You know, when you guys all came to play with him, you seemed so happy to be there and you loved him so much. It was so clear and he loved you and you were excited or at least you pretended to be excited about being there. And I felt incredible relief that I didn't have to do it because you were there. And then I felt guilty feeling so relieved. And I thought, God, these people who aren't even his parents love to be with him. What's wrong with me. Cause I don't, I didn't feel I had the energy for it. So, you know, it was a really difficult dynamic just in my head at the time because I was simultaneously relieved and grateful of course, that you all were there and also felt like a failure in other ways, because you guys had the strength for it. And I didn't feel that I did.

Denaye Barahona: I think that just is a reflection of the idea that we all need support and other people, and we need relief and we need breaks because nobody is going to be able to be all on all day, every day. And the reason that the therapists like I were able to be there a hundred percent and excited and happy was because, well, a I didn't have children at home to suck the energy out of me. I got myself up in the morning, put my own shoes on, put myself to bed at night. So I had a lot of extra energy and I was also only doing it for a couple hours a day. And then I was going home. I got to leave. So I think that that allowed me to come with a different energy. And I think that if I was trying to do that job right now, it would probably be a lot harder for me just knowing that you're actually, I really do think that I don't know if I could do it now.

Jen: Well, I think you view as like super human. So if you can, I think that.

Denaye Barahona: Oh, well, thank you. So the last thing I wanted to pick your brain about was you had told me that you gave up alcohol last year, which I did too. And I just want to hear more about your experience with that.

Jen: Well, it's, I gave up a lot more than alcohol, but first of all, I did not have anything resembling a drinking problem for that. I'm, you know, I drank socially, like I would go out to dinner and have a glass wine, which I, would love now, but I don't do it. I gave up flour and sugar last year, which included alcohol and the whole year for the whole year. And I, you know, I'm still in theory doing it, although we won't talk about that. So I didn't cope well with all of this stress and I put on a ton of weight. I, you know, I got really heavy really, over the last few years, but it was building over time because I would just binge and, you know, to sort of relieve my anxiety, which of course was ineffective, but it didn't stop me from doing it.

Jen: So, I finally last January, I decided to embark on this program that says, no flour, no sugar, no alcohol. It was very tough and, and no snacking, and you have to do portion control. I mean, it's really not fun, but it's given me a great sense of peace and control and I've lost a ton of weight and feel so much better. So for me, alcohol was sort of the easy thing to give up because I didn't drink a lot anyway. And you know, really, I care more about food. It's been harder. But it's all related in terms of, you know, misusing food or alcohol in ways that are harmful or at least not, you know, optimal in terms of your health and wellbeing. So I feel much better having done it.

Denaye Barahona: Jen: I love to hear that. Yeah, I'm proud of you too.

Denaye Barahona: Thank you. Thank you. And I'm so glad that you have been able to share all this with us. And like I said, I think so much of us is going to resonate with so many people who have either been in your shoes or know someone that's in your shoes and want to have a little more insight into all of this. So thank you.

Jen: No, I it's. My pleasure. I hope it can help someone. And I just hope people know they're not alone and that whatever they're feeling is just a feeling and it doesn't mean anything when it comes to their effectiveness as a parent.

Denaye Barahona: Well, thank you for that. Of course.

Jen: Thank you for having me.

Thank you for coming on. I hope you've enjoyed the story and I'm so thankful to Jen for sharing her experiences with us. If you have questions or comments, you can leave those at simplefamilies.com/198. And if you're interested in joining us in the mental unload next week, go to simplefamilies.com/unload. I'd love to have you and get to know you better there. Thanks for tuning in and thank you for being a part of Simple Families. Have a good one.

Denaye Barahona

Dr. Denaye Barahona is a loving wife and mama of two. She partners with families to tackle the challenges of raising children. Denaye is a minimalist who claims to be a decluttering expert (don't let her near your closet). She loves to travel, talk health-and-wellness, and give unsolicited advice. She has been featured on the likes of The Today Show, The Wall Street Journal, The Huffington Post, The Minimalists, Motherly, Becoming Minimalist, and numerous other media outlets. Denaye holds a Ph.D. in Child Development and is a Clinical Social Worker with a specialty in child and family practice.

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