Building Empathy and Capacity for Families with Young Children With Medical Needs
On this episode of the Learn With Less podcast, Ayelet sits down with Parijat Deshpande, of parijatdeshpande.com. Parijat is a leading high-risk pregnancy expert, mind-body health specialist, trauma professional, speaker and author who teaches women how to deactivate their stress response before, during and after a high-risk pregnancy so they can give their baby a strong start to life.
We discussed:
- Parijat’s personal background and how she came to do the work she’s doing today
- What might it mean to be parenting a child with medical needs.
- For those families who are parenting a child with medical needs, the biggest obstacles Parijat sees families dealing with
- Critical tips for families facing these challenges
- Tips for loved ones of families facing these challenges
- Favorite resources for families and loved ones
Helpful Resources Related to This Episode:
Alliance of Professional Health Advocates
Parijat’s Healing Hearts Program
Parijat’s book, Pregnancy Brain (affiliate link)
Learn With Less® Facilitator Training & Certification Program: Use your existing skills as an educator or therapist to serve families holistically with a high quality program that will provide lasting impact! Apply now to become a licensed facilitator Learn With Less®.
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Connect With Us:
Parijat: Website / Facebook / Instagram
Ayelet: Facebook / Instagram / Pinterest
Text Transcript Of The Episode:
Ayelet: Today, I’m speaking with Parijat Deshpande, of parijatdeshpande.com. Parijat is a leading high-risk pregnancy expert, mind-body health specialist, trauma professional, speaker and author who teaches women how to deactivate their stress response before, during and after a high-risk pregnancy so they can give their baby a strong start to life.
Parijat’s unique approach has served hundreds of women to manage pregnancy complications and reclaim a safety and trust in their bodies that they thought was eroded forever. Parijat is the author of bestselling book Pregnancy Brain: A Mind-Body Approach to Stress Management During a High-Risk Pregnancy. She is also the host of the popular podcast Delivering Miracles®, that discusses the real, raw side of family-building including infertility, loss, high-risk pregnancy, bed rest, prematurity and healing once baby comes home. Parijat, I am so thrilled to have you on thank you so much for joining us!
Parijat: Thank you so much for having me. I’m so excited to be here.
Ayelet: I’ve asked you to come on today to this about some tips, parenting a child with medical needs, but first, I would love to just hear a bit about your own background and how you came in that you’re doing today?
Parijat: Yeah, absolutely. So I am classically trained in clinical psychology. That is not where I thought I would end up. I thought I would end up as an OB GYN. That was kind of my dream dream career since I was a really little kid, but chemistry and I realized did not, we don’t get along at all. And so I went kind of in a psychology route, but I was very interested in women’s health from a very, very young age.
And it wasn’t until my own experience with fertility treatment losses, a very high risk pregnancy months on bedrest and an extremely preterm delivery with months in the NICU afterwards, that really shifted the way that I wanted to, and I, I, I guess I, I felt I was supposed to be in this world. And the work I was supposed to do in this world was to show women exactly how much power we have in our bodies. And I, and at first, you know, my focus and I mean, my primary focus really is before and during pregnancy, but it really wasn’t until after I brought my son home from the NICU.
And I, you know, the first two and a half years of his life were just so intense with medical care for him, that it became so apparent to me that the tools, techniques and the power that we have in our bodies as we’re trying to get pregnant. And as we are trying to stay pregnant are still the same types of strengths that we have to be really, really strong advocates for our children, as we are raising them as infants, toddlers and beyond.
And so it really so much of this work is inspired by my personal journey and just seeing how little empowering messages are out there and how much power we have. And so it just, that disconnect never sat well with me. And so that’s how, that’s how we’re here. Short story, short version of that.
Ayelet: I love it. I mean, I think there are certain things like person-centered language and, and, you know, things that we can do for children, say, with disabilities and ways that families can feel more empowered talking about is really just advocating for oneself, one’s management of that… So tell us, because we have quite a variety of listeners here with their own, you know, various back stories, what might it actually mean to be parenting a child with medical needs? Can you give us sort of a brief definition of like, what are some of those things that might look like?
Parijat: Yeah, it’s such a wide range of things, right? It could be having a child with food allergies, having a child with asthma, having a child with developmental disabilities, having a child with learning disabilities, having a child with anxiety or depression, having a child with digestive trouble. I mean, it’s really such a wide, wide range. And I like to keep that really open to the definition that the parent comes in with, because oftentimes we can’t see the medical needs on the outside and the child may look completely fine to the untrained eye, so to speak, when the parents know a completely different story, from, by living with them at home and by raising them at home. And so I think it’s really important for us to honor what that definition is for each parent and each family.
Ayelet: Yeah. So important. And then for those families who are parenting a child with medical needs, whatever that might mean, what are some of the biggest obstacles you see is might be dealing with?
Parijat: I think there’s a number of them. One I find to be the, the, maybe not the first one that comes up, but often is the most prevalent is the loneliness around this style of parenting. And whatever that may be, because depending on the needs of the child, what you have to do as a parent is, is on top of what you have to do with all the typical things to take care of a child. You know, if you’re changing diapers, you’re feeding, you’re brushing teeth, you’re, you know, teaching them how to count, something like that. And then on top of that, you’ve got all these medical needs and there’s, there’s a loneliness around that because it’s really hard to connect with other parents who may not understand.
And I can speak from personal experience, too, is there’s sometimes a pull for, from our loved ones to go, but she’s fine now. Right. But he doesn’t need so much now, right? He’s, he’s three, she’s six, like it’s, it’s over now. Right? And for, for families who have children who have either chronic medical needs or ones that are complex and will take time to resolve – if they resolve at all, uh, there’s that pressure of needing to appease or kind of comfort people in our life, which then further adds to that loneliness, without being able to truly share what the challenges are, what the realities are of raising a child with complex needs, whatever those might be.
And so I think that that’s kind of backdrop against which so much else happens. There’s the logistical issues of trying to coordinate appointments that, that can be so challenging. The mental load of that can be so exhausting. Trying to figure out appointments schedules between certain specialists. If you’re working, then trying to figure that out with work and your employer, if you’re employed at a, say a corporate job, trying to figure out just the moving parts of schedules is another aspect of it that comes up, which can be very, very exhausting.
On top of that, you’ve got the management of medical bills and coordinating that with insurance coverage. The first two years of my son’s life, I probably spent about five hours a month on the phone with insurance, trying to figure out why all the bills were messed up or why certain charges were, you know, given there so many mistakes that kept happening. And that in itself also almost a full time job to do all of that. And so I think there’s so many different factors.
And then you’ve got the emotional side of it. There is a tremendous amount of grief that needs to be grief. There’s a loss in having a child and watching a child grow up with any type of medical needs. That’s not something any parent wanted for their child, right? It’s not something that you hoped for. It’s not something you wish for as a parent. Sometimes we can see a few steps ahead, which is a blessing and a curse at the same time of what these medical needs might mean for our child, as they become toddlers and young children, and then move on to school age. And there’s a lot of loss in that, in your role as what you thought it would be as a parent, what you hoped for, for your child.
And there’s a, there’s a lot of loss that needs to be grieved, and there’s often not enough space or allowance to, to actually agree with that because there’s a pressure of, well, but at least your child’s alive. Well, at least your child can walk well, at least… And there’s so much pressure to overcome that. I like to call it toxic positivity, which can be very, very difficult for parents who are raising children with medical needs to overcome and to live with when oftentimes what we need is to be able to talk about it and go, this day is hard. This week is hard. This phase is hard and that’s, this is why, and to have a safe place to be able to do that. So I, it’s very nuanced and a lot of different layers kind of built on top of each other, that impact the experience of raising a child with medical needs.
Ayelet: Thank you for breaking that down for us. I think it’s really important to hear all of it, as we said, the audience base for this show is many of our listeners know exactly what you’re talking about are some are not as attuned to those experiences. So thank you. Yeah. All right. Well, we’re just going to take a brief break to hear a word from our sponsors. And then we’re going to hear a few tips from Parijat, for families facing these challenges and for loved ones who are facing challenges like these. And we’ll hear about her favorite resources to share with families.
Ayelet: Okay, Parijat. Let’s hear some of your most valuable tips for families facing these sorts of challenges.
Parijat: Yeah, I think the number one thing is actually tied to the last thing that I just said, which is give yourself the opportunity to grieve the losses, because as long as we try to avoid that and we, and it’s so easy, I say this purely from personal experience, as well. As long as we try to avoid that. And we just stick with the go, go, go of the logistics and the routines and the therapies and the whatever is required, the appointments and all of that, which is very easy to fill up our time with, that grief sits deep and it gets deeper and deeper and deeper.
And it comes out with red flags that show up often as your own medical needs, new diagnoses that you come up with new illnesses that you end up happening having, or you end up getting sick more often. And you know, if you’ve got a child with medical needs, you have even less bandwidth to be able to get sick or be knocked down for even day or two, because your life is busy. So really, really allowing yourself to experience and release that grief that comes with parenting a child with medical complications that you had wished they’d never had. I think that has to be number one.
Ayelet: Oh, I was just going to say, what are some of the ways that you recommend to people, people doing that?
Parijat: One of a really great way to do that is to find people who you can really resonate with and who can hold that space for you. Sometimes that’s a professional. Sometimes that’s another parent who has either a child going through the same type of thing or something completely different. I can tell you from my personal experience, sometimes the parents who really understood the most about what I’m going through, many of them were micro preemie moms. And they’re, our friendship is invaluable, especially as we get into RSV and flu season in the winter time.
But there were also parents who had children with different medical complications than my child did, but really understood the lifestyle shifts that it required in order to care for our children, even though the diagnoses were completely different. So I think number one is connecting yourself with people who really speak your language and, and keep an open mind that again, the diagnoses for your children may be different, but if they understand kind of the underlying challenges, they may be fantastic supports for that. I think, secondly, in order to release some of that grief, it requires you to be in a place where you can allow yourself to really tolerate that, feeling.
And I’ll say this all the time on my podcast, I say this all the time to my clients, and I’ll say this here, too: grief is painful. And that doesn’t mean there’s anything wrong with you. If it hurts, if it doesn’t feel good, if that is the point of grief, so to speak, it is, it is painful. And the more you release it, the less painful it becomes time does not heal it. It will be in getting it out of your body. I’ve got several techniques that I teach my clients on how to do that because it is so essential.
And it’s not something you can talk yourself out of, although sharing your experiences is wholly invaluable. But it’s really just about allowing your body to lean into that, really feeling it and then letting it go. And it’s hard. It is really hard and it is also extremely beneficial for you to be a better and more present parent. And for you to also protect your health as you are caring for your children. So I think that would be kinda my, my number one thing, where to start with being right there.
Ayelet: Right. What other tips do you have for our audience?
Parijat: Yeah, I think the second thing is, and this is the, this is one that I wished I had learned myself sooner is to delegate. There are certain things that only you can do for your child. Totally fine, right? That’s great. That is your spot. That’s where you need to be. What other things do you have in your life that you personally do not need to do, right? Is it washing dishes? Is it doing laundry? Is it, it could even be making the appointments. Do you have somebody in your life or could you hire somebody to make these appointments and juggle the calendar for you?
There are patient advocates around the country who actually will make phone calls on your behalf to insurance companies and handle that nonsense, if you will, on your behalf, you know, where can you find moments in your life? And I know that sometimes we hold onto some of these day to day tasks as a way to maintain some semblance of a life that we’d wished we’d had.
Again, it goes back to grieving those losses, right, of well, I thought I would be the mom who cooked dinner every single night. And I really wanted that for my children, but truthfully given the circumstances, maybe that’s not possible right now at this stage of life. And that’s okay, can you have somebody else cook for you? Can you order some meal kits, order out whatever that might be, find those places to delegate because the mental load that you have as a parent, raising a child with any type of medical needs is much higher than the mental load of a parent who does not have a child with complications.
And I, I think it’s very easy to downplay that because we can’t see it anywhere, right? But if you sit down and you actually make a list of every single thing that you’re holding on in your head every single day, it is much more than which appointment do we need? Do we need to update the equipment, the medical equipment, do I need to call insurance? There’s so you’ll be shocked at how much is in your head. And the more you can kind of take that out of your head and give it to somebody else for the things that you don’t need to do, that can be done any time by anybody else.
You are going to start to feel a relief, you’ll start noticing your body will relax a little bit more and your shoulders will drop a little bit more. And that’s not because you’re just breathing more deeply. It is just literally, because you can imagine the bricks you’re carrying on your shoulders. You’re just kind of handing a few of them off, and so the weight will alleviate a little bit.
Ayelet: Yeah. And I love that visual. What are your best tips for loved ones of families facing these challenges, because we’ve talked about so much of the people who are actually dealing with it, and it’s so important to have a few of those. And if you’re not ready to move on, do you have any more tips for these guys, please go ahead. I want to make sure that we give tips to loved ones of family members for this. We want to support families.
Parijat: Totally. I’ve got a couple that I find to be really helpful and really powerful in strengthening your relationship with your loved one. So if you are a loved one, if you are somebody who has a loved one is parenting a child with medical needs, one thing I often recommend is watch how you ask your questions. So instead of asking, when’s your baby coming home from the hospital, when’s she going to be off oxygen? When’s he going to be able to drink milk again? When is she going to be able… You know, instead of asking that because oftentimes the parents don’t know, and the not knowing is causing tremendous amount of uncertainty and tension and stress and anxiety for parents that they, they don’t often share, but they live with every day.
So instead of asking that way, I often recommend asking about their current situation. How is your child in the hospital? How is the speech therapy going, Hey, I know you said that you took them to the audiologist. How did that appointment go? And so instead of focusing on that ultimate outcome, because we don’t know what that’s going to be, there are going to be some children who, who, whose symptoms improve, or the diagnosis is just gone completely because they’re so quote unquote healed. And there are going to be some children where they’re going to live with us for the rest of their life. And we do not know sometimes who those kids are.
And so instead of focusing on the outcomes, it’s, I, I find it to be so much more supportive to focus on where they are right now. Ask them about what’s going on, ask them about what’s the big thing that they’re dealing with. What’s the big win for the week. And you’ll be surprised to hear what these families are celebrating that is so meaningful to them. You know, maybe it’s a walk to the park. Maybe it’s the fact that the child ate macaroni for the first time. Maybe it’s the fact that the child put her feet on grass for the first time or that they could read a sentence for the first time, even though they’re much older than you’d expect, it doesn’t matter. These moments are so special. And I can tell you from personal experience, we like to share this and we love to celebrate with our loved ones. And so asking us where we are in the moment is so, so helpful.
Ayelet: That’s great. It’s such a good place to start. What else, what else? Family or friends looking for additional support. What can they do?
Parijat: I think the other thing, the second one is more on the practical side, which is tied to the delegation. Sometimes it is very hard to delegate. I have a very hard time delegating. Just the idea of even thinking of what to send to somebody and then asking to do it is hard. I find it still very challenging. So if you can see it from the outside and go, oh gosh, I haven’t seen this person in a couple of days. Maybe I’ll come by and bring them dinner, maybe I’ll call and check in and see how they’re doing. Maybe I can invite them to something so that they get a break.
Giving, trusting that you can probably see something that they’re able to benefit from your help with, and then offering that help and really being there, checking in frequently, coming by and visiting if it’s safe and for the health of the child for you to do so, because I know that’s not always the case, but just really being there and offering as much practical support as you can, maybe it’s doing play dates at your house. So the parents get a little break, whatever that might be, walking the dog, All of that helps so, so, so much really just relieving that mental load for the parents.
Ayelet: Yeah. A good one that a friend of mine and I were recently talking about was like, just replenishing basics in the fridge. What are you out of? It’s so simple, right? But makes such a big difference! So yeah. Fantastic. Any other things that you’d like to share with us?
Parijat: I think the only other thing I would say is that there are a lot of challenges and there are also so many moments of just incredible eye opening moments of, of just, “wow!” You know, it just takes your breath away what the human body and the human spirit can do. And so as the parent, to really just, when you have a moment like that, when your child is doing the one thing you’ve been working on for so long or we’re told they would never do, or even some, some semblance of that to really just stop it all. And just bathe in that moment, because those are the moments that carry us through.
And as parents of children who have medical complications, we know how few and far between those can be. And so we need, you know, that’s kind of like our fuel to, to boost us back up and to keep doing the things that we do out of love every day, but that are very exhausting and taxing on the mind and the body. I think similarly for our, our family and friends is to continue to be open to what these moments are that we’re celebrating, because they may not look the same as what you expect for a child of whatever age it might be.
These might be much smaller or much nuanced moments, but they’re a really big deal for the family. And so, join us in the celebration and really get a chance to understand what this means in the context of this child’s life, in this family’s life. And, and in doing that, I think we create a really beautiful community that’s so helpful to carry us through even during some of the darker days and the harder days, because those ups and downs happen as we’re raising our children with these needs and things are changing all the time.
Ayelet: So true. Thank you. Parijat, let’s hear some of your favorite resources that you like to recommend to families or to loved ones looking for additional support.
Parijat: Yeah. You know, I recently came across and now I can’t think of a name of it, of course. So I will send it to you after, but there’s a really great organization that has patient advocates available around the country. And I really, I just think that’s such a fantastic resource to have, because I, I said this earlier and I still looking back and thinking about those days, calling the insurance companies and coordinating all of that and doing three way calls with, you know, the clinic and the insurance.
And this is, it was it, Oh my God. I think it took years off my life. And so to be able to delegate that, to have somebody who knows the system very well and can do this on your behalf is so tremendously powerful. So I’ll send you that link so you can send it out to your, your members. I, it completely just flew out of my head.
Ayelet: And we’ll certainly put it in the show notes as well. Perfect.
Parijat: I think that’s great. I think, you know, because there’s such a wide range, there’s not one specific resource I have, but finding parents like you, who are living the life similar to you is super helpful. And I found that we, there were actually groups on Meetup that I could find that weren’t necessarily specifically for micro preemie, and we tried this through our hospital and in our case specifically, it was just so hard to coordinate because of how many health challenges there were.
We couldn’t actually meet in person. So there were some more like larger umbrella type groups of like special needs kids or kids with developmental disabilities or autistic kids. And you can find some of a bigger umbrella like that. And within that, you might be able to find that, you know, a few handful of people that really get your specific type of lifestyle and then to add to that would be, find virtual support groups. Because I also know how, like you’re busy, you’re even if you’re not working outside the home, sometimes taking care of your child fills up your calendar so fast.
I remember there was some times where I’m like, I really need to talk to a friend. I cannot get myself out of the house, can’t do it. And so video chats and virtual support groups that meet in a group, something like that I found to be so, so helpful. And you can find those there’s a lot more of them now than there were back when we were kind of in this phase, which is really, really supportive and helpful. And sometimes your hospital or your clinic or the social worker at your particular, maybe developmental clinic might have access to your resources that are very local to you so definitely check that out.
Ayelet: Awesome. Awesome. Awesome. And where can people find you, Parijat, if they’re interested in your resources?
Parijat: Yeah. So yeah, I guess I should mention that. So I actually have, I have a couple of workshops coming up on for parents actually, who are parenting children with medical complications on how to relieve the grief and trauma of parenting a child with medical complications. So that workshop’s actually coming up. And if you experienced a traumatic experience trying to get pregnant, stay pregnant, or afterwards, then there’s a second workshop for that.
And I have a group program that actually encompasses all of this called Healing Hearts that I think would be fantastic. We have several moms in there right now who have children with complex medical needs, who have just in a very short amount of time have had major medical issues of their own completely reverse because of the nervous system regulation techniques that I teach in there. And that’s, that’s called Healing Hearts. So best place to find all of that is on my website at parijatdeshpande.com. And there’s a button on the homepage that says live events, and you can check out how to join healing hearts or how to join some of these upcoming workshops in the next few weeks!
Ayelet: And then I’m sure that your podcast itself, Delivering Miracles, is a great resource for people as well in general. So thank you so much. Thanks so much, Parijat, thank you to all of our participants of the Learn With Less® Curriculum Online Family Program. If you’re listening live and we’ll continue the discussion and open up for a Q&A session with you guys in just a minute, but for everyone listening from home or on the goat, thank you so much for joining us and we’ll see you next time.
