The Heart of a Parent

Cindy Lopez:
Welcome. My name is Cindy Lopez, the host of this CHC podcast, Voices of Compassion. We hope you find a little courage, feel connected and experience compassion every time you listen. The journey of a parent is often a winding path, sometimes obscured by the unknown yet it’s rich in challenges that can become catalysts for growth and understanding. In this special podcast episode, we have a conversation with Jen Ullyot, a parent coach who has long time connections with CHC through her kids and more. She candidly shares her experiences, offering insights into the roller coaster of emotions and the unexpected joys that come with parenting a child with special needs. She knows it’s not easy, but she also knows about the resilience of kids and families and the power and agency found in the positive choices we make. Listen to hear more about how you can navigate your family’s journey with grace and compassion.

Hi, Jen. We’re so happy that you joined us today, and I’m hoping you could just tell us a little bit about yourself before we launch into the conversation.

Jen Ullyot:
I am the mom of three children who are now in college and high school, and my oldest child has had developmental issues. He has Aspergers. He’s high functioning on the autism spectrum. And so I’m here today to talk a little bit about my journey now that he’s pretty much grown and in college, in hopes that talking about my journey is helpful or supportive to other parents who are in the same situation, who might have younger children, who are wondering, you know, what does that arc look like or what could it look like?

Cindy Lopez:
Thank you so much. I know that my experience in talking with many, many parents is they really appreciate that connection with others who have been there done that or who are in the middle of it. So thank you for making the time today to talk with us. As you think about our conversation today, what are some of the most important messages that you want to make sure you convey to our listeners, many of whom are parents just like you.

Jen Ullyot:
I’ve been the parent of a special needs child since we got a diagnosis about 20 years ago. So I’ve been at it for a while and with that time and perspective, it’s been really helpful to kind of think about like the nuggets that I would love to share with other parents and one of those things starts kind of at the beginning when you get a diagnosis or find out that you have a special needs child. I I think it’s important just to acknowledge that the expectations are different and to acknowledge that there’s some grief and some loss there as we have this one image in mind that’s kind of born of the what to expect books. And most people expect to have a typical child and then when that doesn’t happen, you know, it can be a challenge. And so taking that time to process that and to acknowledge it and to have some compassion for oneself and really the whole family unit is so important to be able to ideally then make a shift so you don’t feel so overwhelmed or so kind of sad about the situation.

Cindy Lopez:
I’ve said this before on other episodes, but it reminds me of that story, Welcome to Holland. You and I talked about it previously, you know, I’m really excited. I’m going to Italy. I’m reading all the books. I’m studying the language. I’m learning the language. I’ve determined where we’re going to go and what we’re going to see. And I get on the plane and next thing you know, we’re landing in Holland. I’m not prepared for Holland. I don’t know the language. I’m not familiar with where we want to go and what we want to see, but the kind of fun thing is there are windmills in Holland and tulips in Holland and fun things in Holland. So, it’s just interesting processing that grief and loss. And as you did that yourself, what kind of came out of that for you?

Jen Ullyot:
Once I was able to process it and to, you know, again, it’s like have some self-compassion, which was so important. You know, that I was really able to shift to, it’s kind of a new narrative, a new story, I think that served me better. It served my children better. And that really was that there’s nothing wrong here and that there’s nothing that needs to be fixed. There’s nothing broken and really kind of the highest level it’s like what is this experience here to teach me? And it takes a while to get there, but the idea was, you know, how to drop down out of, like, the super analytical mind and to drop down more into the heart, it was a key part of that. So a lot of it, too, is just getting a little bit more agency and power back in having some choice. And the choice is about how I looked at my situation. And at first it was really, you know, kind of difficult and almost kind of like an out of body experience, especially because I didn’t know that many people back then, 20 years ago who had children with developmental disabilities. It felt very alone, very isolating, but I think once I was able to kind of have the sense that, you know, in a way, I feel like my son chose me and I chose him and in some way we were kind of like perfectly matched. It was meant to be.

Cindy Lopez:
Yeah. Love that.

Jen Ullyot:
And you know, what was I going to do with that? What was he and the experience here to teach me? And so that’s been very helpful and supportive to me of making that choice to be like, all right, there are a lot of ways I can deal with this and I want to choose that one because it’s the most kind of elevating to me and to my family, and I think of it a little bit like a dial not a switch, where there are certain days where it’s like, gosh, it’s hard, you know, and so I don’t want to be pollyanna about it. And it’s not like I turned off my grief or I turned off my disillusionment, but it was like with every passing day or week or month, my dial it turned a little bit more towards, kind of, you know, from acceptance and acknowledgement to really a joyful love and acceptance for my child and what was, and trying not to wish it away, but to embrace the child who I had.

Cindy Lopez:
Hearing you talk about your experience and what you were thinking about, I love what you said aboutyour child choosing you, you choosing your child and making those choices and also the dial versus the switch. I think lots of our listeners can probably relate to that. And I wonder, are there some key takeaways as a parent of a child with challenges that you would say were part of your journey?

Jen Ullyot:
You know, I guess it’s that learning how to kind of accept two things at once, that it was I guess a sort of an enriching and like positive experience for me, and at the same time could be really hard sometimes. So, being able to have that kind of two things can be true and really making that a key part of my worldview. I also really was always very open with friends and family about what was going on for my son and for our family. And that worked for us, but I found that by being open and talking to friends who had typically developing children, inevitably, they’d be like, well, you know, I know someone or my sister in law has a child who is three years old and isn’t speaking. I wonder if I could connect you with that person and by being open with people, I sort of eventually got this network of other special needs parents, and maybe they were in different states and they weren’t friends, but they were friends of friends and it was really helpful to create that network of other mothers in particular, and we were really supportive to each other and it was helpful to talk to moms of children who are a little bit older to get a sense of, like okay, here’s what I might be looking at in two years or three years and then also to kind of pay it forward and speak with parents of slightly younger children so that I could share with them, you know, what our path had been or resources or ideas about things that might be helpful to them. So community has definitely been one of the huge pieces that has just been an absolute lifesaver, and I get the sense that it’s easier to find those resources now than it used to be. And, you know, and thank goodness.

Mike:
CHC’s Voices of Compassion podcast is made possible by the generosity of people like you. To learn more about supporting CHC, go to chconline.org/donate. Also make sure to follow us on social media for more inspiring and educational content from CHC.

Cindy Lopez:
Let’s kind of go back to the beginning of your story. You know, you talked about when your child was originally diagnosed, what were those early days like?

Jen Ullyot:
The earliest days it was sort of this noticing things that were seemingly just like a little bit off. I mean, my son was very healthy and there were no real indicators until maybe he was about seven or eight months old that anything was other than kind of truly typical. And then at seven months old he started flapping his arms up and down when he was excited about things, and I spent a fair bit of time with young children and like I’d never seen that before. Um, and at the time we were living abroad, so it was a little even more challenging because when you’re not on your home turf it’s kind of harder to know what resources to bring in. And then as he got to be one and even over one years old he really wasn’t speaking at all. So he was making a lot of vowel sounds, but he was not saying mama, dada anything. And also there were times where his eye contact wasn’t really great. And there were other times too where he would be, you know, kind of obsessed with one particular toy or one activity, kind of to the exclusion of everything else. And so all of these different things led us to take our son to a developmental pediatrician when maybe just before he was 18 months old. And at that point, you know, we didn’t get an autism diagnosis per se. But, you know, we knew that there were developmental delays and that we should take him to speech therapy. And so we sort of began on the journey of creating a big team of people who were there to support him. And so he went to speech therapy four days a week, we went to occupational therapy. I sought out the advice of nutritionists and he was taking probiotics like 20 years ago. So kind of the world of autism, they were kind of the early movers on gut health and how that might contribute towards anxiety and other pieces of other symptoms. So we had just a big team of people and I found myself kind of the quarterback, so to speak, with a lot of people who were just amazing, who we would never have met. And so I’m always very grateful to those people who eventually helped him speak his first word when he was about three and a half years old, but it was, tough early on. And, I was unprepared for this, and I had my second child not long after, you know, we took him to the developmental pediatrician. And so then I had a baby, and I had a toddler who had a lot of needs. And, I was definitely depressed there for a while. And fortunately, I got the help that I needed so that I could have kind of, you know, the gas in my own tank so to speak so that I could be the mother I needed to be for both of my two boys at that point.

And fortunately, you know, my husband and I were on the same page. He was very supportive as were our families were both supportive and very loving of both of our children as well as supportive of my husband and me as we were, you know, in the early days of, I won’t say it’s sort of a crisis mode, but it’s sort of the whole family goes through this together. And so I’m always grateful to them for the support and the love unconditionally for our whole family.

And, eventually my son got into an inclusion model preschool, which was amazing for him. I felt like a lot of the weight was taken off of my shoulders because every day he showed up at a place where they knew him, they understood what he needed. They were very loving and supportive. He loved to be there, and he got to do things that were, you know, quote unquote “normal.” And be in social situations where he was learning how to navigate that which is not always easy for someone on the spectrum. So, you know, and fortunately, my son loved all of his therapies, all the amazing professionals at CHC and other organizations who make it super fun and they find games to play and other ways to help kids grow and develop, you know, when they think they’re just playing.

Cindy Lopez:
Yeah, you’re very open about your journey and your experience. Has that always been the case?

Jen Ullyot:
You know it has always been the case. It just, it felt awkward and just not very authentic to try to hide it, but it was also the elephant in the room. It’s like here I’ve got a two year old who doesn’t speak like how am I gonna hide this? And by being open both about what was going on for him as well as you know of what like my experience as a mother was friends and family were so supportive and helpful. I think I really would have deprived myself of a lot of the support that I needed to keep myself going had I not let other people know what was going on. And again, that helped me to build a lot of bridges to other people who, you know, became great friends, and it’s a great tribe. You find that other special needs parents, you understand, I think and relate to each other quite quickly and easily and friendships are made pretty quickly too because not everybody understands what it is to be walking in those shoes.

Cindy Lopez:
Thinking about how you started in terms of like the grief and loss that you expressed and then kind of the fear and the overwhelm, like what do I do now and moving forward to, as you were saying before, talking about making choices and that gave you agency. I’m wondering, are there more valuable things that you’ve learned along the way?

Jen Ullyot:
One of them is, you know, self-care, which I think can sound so trite in some ways, and it doesn’t mean that like you’re out getting a massage every week, but of really understanding particularly, like, I was at home with my children, and my husband was at work and did parenting when he came home from work, but that if I let myself get too depleted or burned out that not only was the experience all the more challenging for myself, but like I didn’t have the bandwidth to be the kind of mother that I wanted to be and that I needed to be, which is somebody who had a decent reservoir of patience and calm and to have access to that is really tough when you haven’t been getting enough sleep or if you’ve been depriving yourself of kind of like the simple pleasures of reading a book of fiction that has nothing to do with child raising or watching a cheesy TV show or exercising, that however much time you have, whether it’s, you know, five minutes or two hours to take that time for yourself and maybe like, let the playroom be cluttered and not be running around picking stuff up, but just to rest and to kind of see the value in that, not just for yourself, but also for your child. And the other thing too that I think is really important that I see more in retrospect, and I don’t know that I did the greatest job along the way, but of continuing to see myself as an individual person, not somebody’s mother, not somebody’s wife, not any of those things, but to maintain kind of this individual autonomy, and seeing myself as a person too. I probably wish I’d done a little bit more of that and not wrapped my identity so much up in mothering. And so, it’s like, gosh, I wish I’d maybe had explored some other outside interests and had spent more time doing things that were not related to being a mother. So the extent to which people have time for that, I think that can be valuable. And even if it’s just thinking about it consciously as a mindset, whether or not you’re able to kind of act on that, I think is helpful, and maybe even kind of falls under that kind of self-care umbrella.

Cindy Lopez:
As you talk about it, I’m just reminded so parents often are really involved and consumed by finding the help that their child needs and putting all those pieces together. And I think what I’m hearing from you is another piece that you need to include as you put this system together for your child is that self-care piece, like make sure that that’s included as you think about the supports your child needs because I think you’re going to show up for your child a lot better if you have that sense of like the self-compassion, the self-care, and what you just talked about, the sense of individual autonomy and identity. I’m wondering, I know I’ve heard from lots of parents that the marriage relationship sometimes is hard or it can take a hit. Do you have anything to share on that front?

Jen Ullyot:
For us, you know, my husband and I, I think we’re pretty much on the same page throughout. I think maybe I saw things a little bit earlier than he did because I was with my son every day. And, I know for some people or friends of mine also who had kind of conflicts with spouses and that their spouse would say, “well, there’s nothing wrong here. I think that this is overblown. This isn’t such a big deal. I think a little bit more denial and a little bit slower to get on the on ramp of getting some sort of intervention for the child or to get a diagnosis for the child. So, you know, it’s a stressor to a family system. So, understandably, it can stress the marriage too. And so ideally having communication and kind of acknowledging that you can have two people who have slightly different views that, you know, nobody has to be wrong, but really having open communication and making sure that each one of you knows how the other is feeling, I think can be really valuable. But it is taking care of a special needs child it can take more time, more resources, et cetera. And that can, you know, again, stress the family system, which is, again, why taking advantage of like, you know, getting the night out and getting a babysitter guilt free and going to a movie or having, you know, grandma or grandpa come over and babysit. If that’s offered, I think it’s great when the answer can be yes.

Cindy Lopez:
Yes. Yeah. I’m wondering if you have any additional advice for parents who are just starting this journey or who are in the middle of it.

Jen Ullyot:
I guess one of the other thoughts and we touched on a little bit earlier, but is sort of the narrative or the story that we tell ourselves about what’s going on for our child and ourself and our whole family. And really being a very kind of conscious creator of that story and what you want that to be for yourself, for your child. And also, I think, I feel like what I put out into the world was what was reflected back. So when I talked about my son and his struggles, speaking, you know, as sort of matter of fact and honest, and here’s where things are and he’s working hard and he’s doing great. And that positivity I feel like boomeranged back. And, so just being really, I think, mindful about the way you present that story to other people because people do pick up on what you put out there, and if there’s more of this positive energy and calm and the love versus fear. I think that’s contagious. And then that’s how people are going to react to your child or that’s how the siblings will react to the child and really kind of anybody in your orbit. So, that is something that I think is worthwhile to take a moment to be really mindful and intentional about that versus just kind of a default, some narrative being created that maybe is not the one you’d wanted if you took the time to think about it.

Cindy Lopez:
Yeah. I like that. That, you know, kind of what you put out there is kind of what comes back to you and people reflect that. That’s a good reminder for all of us.

Jen Ullyot:
And even just that, you know, when I think about even just sort of, like, the energy with which we do certain things. And it’s interesting, because now, in my kind of my encore career, as a parenting coach, one of the absolute kind of foundation principles is, you know, you start with yourself, and that by being able to be calmer and to be able to self-regulate, that when we’re calm, our children will be calmer and our households will be calmer. That calm is contagious. And if we can work on ourselves to be that calm that ripples out to everybody around us.

Cindy Lopez:
Yeah. That ripple effect. It’s really important. And I think it’s such a nice, like visual to have too.

Jen Ullyot:
And again, not always easy. But sometimes, you know, there are tools of, you know, mindfulness and again, self-compassion and the self-care piece I think feeds into that ability to kind of like take those deep breaths and to be more responsive and less reactive in situations that are challenging.

Cindy Lopez:
Yeah. You know, from working with many different parents over the years, everyone has their own style. So it’s harder for some people to be less reactive or calm because it’s kind of not how they’re wired. So it does take some relearning for some people. And I just really appreciate you sharing everything that you have today and talking with us and your story and the fact that you’re so open about it and that you want to share your stories because hopefully others can benefit from that too.

As you think about kind of moving from the feelings of guilt and worry that you might have started with way long ago, over 20ish years ago, to feeling empowered and positive about your journey, are there some specific things that you would advise parents to do?

Jen Ullyot:
There’s the self-compassion piece, the self-care piece, the building up a circle of support of finding likeminded parents who are available, you know, either locally to get together with or people across the country who you can Zoom with. But to have that community, it’s so nice to be in an environment where your typical situation to some is the norm. And the other thing too, which can be very, you know, weighty and serious and emotional on some level, but another piece that I think can sometimes be overlooked here and really in all of parenting and difficult situations, whether you have typical children or they’re not typical is humor and fun. And bringing kind of a joyfulness into different situations. So I think also, you know, particularly with other parents who are in similar situations, there are times where, like, you know, if you can’t laugh, you’re going to cry. So being able to have a little bit of a little bit of humor and to be able to laugh at some of the situations, which are, you know, funny or silly or whatever it is or just as a way to kind of release stress. And then just to bring more fun in when possible, because it certainly makes the days go by more quickly. And, it’s easy for that to kind of find its way to the back burner sometimes. And so making that kind of conscious effort at play and fun and humor and bringing in levity where, you know, what and where you can, ideally on a daily basis, it certainly I think makes the days go by more quickly.

Cindy Lopez:
hmm. Jen, thank you so much for being with us today, for sharing your experience so openly and your heart, the heart of a parent. For our listeners, if you are in a situation where you need some help and you’re trying to figure out what’s going on with your child, please reach out. You can visit us at chconline.org. You can contact our care team at careteam@chconline.org or call them at 650-688-3625. So thank you, Jen. Again, thank you to our listeners.

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