Diagnosis: What You Need to Know

The Unexceptional Moms podcast is back! Erin, Jen and I had a great time recording this episode. Erin and I think we’re a little rusty, but we promise we will get our groove back.

The podcast resource companion available to all our patrons is the Diagnosis Checklist and the Diagnosis Essentials Organizational Chart. Want this resource? Become a patron!

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Transcript of the show:

Ellen  0:26 
Welcome to Episode 31 of the Unexceptional Moms podcast. Erin and I are really excited to be back with you, and this episode is all about diagnosis. We talked to Jen Jacob, who is the executive director of the Down Syndrome Diagnosis Network and we are talking about diagnosis, for all of us, and the things that we need, the resources that are helpful, and that there is always hope after diagnosis. Now, a couple of things are new. If you remember from previous episodes, I always created a downloadable resource to be a companion to each episode. Well, that is still happening. The podcast now has a Patreon page. So all our Patreon supporters get to have these downloadable resources. So the resource for this episode is a Diagnosis Checklist and a Diagnosis Essential Organizational Chart. So this is something that maybe you can use, or maybe something that you can give out to someone whose child has recently been diagnosed. But as we continue on, let me tell you a little bit more about Jen so you know who we’re talking to. Jen, like I said, is the co-founder and executive director for the Down Syndrome Diagnosis Network, the DSDN. As part of her role, she manages daily operations and over 100 volunteers serving their network of families. They support more than 11,000 new unexpected parents. They do it through moderated online boards, they do it actually face to face, they collaborate with national and local organizations, and they host an annual event for parents to connect, get inspired and recharge. Jen is also the co-author of “The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration and Support for Raising Your Child from Diagnosis Through Adulthood.” And she is the author and contributor for “Unexpected Stories of the Down Syndrome Diagnosis,” and you can find those on missiont21.com. Jen is a former educator and professional development leader. She lives in the Midwest with her husband and four children. And her youngest son — his name is Owen — he has Down syndrome. So let’s listen to the interview.

Erin  2:47 
We’re back! Welcome to the Unexceptional Moms podcast. I’m Erin Loraine.

Ellen  2:53 
And I am Ellen Stumbo. And Jen is with us.

Jen  2:57
Hello

Ellen  2:59 
We’re going to be talking about diagnosis today. And keeping in mind the diagnosis is not just for babies. So all three of us we all have kids with Down syndrome. And Jen, I don’t know… you knew prenatally, correct?

Jen  3:15 
Yeah, well, we had a likely diagnosis. They found a few soft markers at my anatomy scan. And then we actually were one of the first people in our area to do one of the non-invasive pregnancy screens. And so, and it was actually presented as a diagnostic test to us, so we totally thought he would have Down syndrome when he was born. But knowing now I know a little bit differently, but yes, we prepared that he would have Down syndrome.

Ellen  3:43 
And we also knew because of markers that it was likely, but we didn’t do any diagnostics. And Erin?

Erin  3:50 
I adopted a child with Down syndrome. I knew!

Ellen  3:54 
Yes, you did know! But the reality is that, you know, some people know before – prenatally —  some find out at birth. And then you have the parents who see that their kids are not meeting milestones, and they start asking questions, and then they pursue a diagnosis and they might not find out until their child is 2, 3, 8, 10. And then you have the parents who still know that there’s something happening with their child and their child has not even been diagnosed yet.

Erin 4:22 
True, speaking not necessarily of Down syndrome.

Ellen
Correct.

Erin
In some of those situations.

Ellen  4:28 
Right. Right. Just different diagnoses. And Jen is the expert on the support, what needs to happen when someone has a new diagnosis, well, when their child has a new diagnosis.

Jen  4:42 
Yeah, we have learned a lot over the years about what parents feel when they’re going through the diagnosis experience. And it’s been really just incredible to hear what everybody goes through and then be able to better help people, help new parents based on all of that information.

Ellen  4:59 
So, let’s talk about what parents need most upon diagnosis, what we wish we would have had, what we wish had been different.

Jen  5:09 
Oh yeah, that’s a can of worms. Actually, our diagnostics experience was not really awful. I mean, we really got good information and we had access to a genetic counselor, all those things. So I really, for myself, personally, I went okay. The stories that we hear from other people though, really drive it home how unwell it’s sometimes going for families. And I think that’s what drives us to do our work at DSDN for sure, and I know it’s what drives you guys to do these kind of podcasts and information to really help people know what they’re going through, other people went through it too, and having that me too moment of, yes, like, I didn’t have exactly the same feeling as somebody else, but there is somebody else who can validate that these are okay feelings to have when I was going through all of that time regardless of whether it was prenatally or afterwards, but just knowing that you can get through all of that and not feel so odd about it, I guess, maybe, that you’re just alone and that you’re maybe a terrible person. I mean, we hear stories from parents all the time that just feel awful about how they felt when they heard about their child’s diagnosis and having them know that they can talk to other parents that felt the same thing that they maybe can’t say to even their closest family and friends because it feels so isolating sometimes, to know that you love your child as much as you could love anything in the world but still have so many worries and fears and anxiety and all of that. How it comes together. It’s just so it’s such an interesting piece of parenting, I feel like, that you can have those two things and thoughts and feelings going on so strongly but still come out on the other side okay with things.

Ellen  6:55 
I also think about parents who have kids on the autism spectrum, right? When a parent is suspecting” it and I have so many friends who almost had to fight for that diagnosis because maybe the pediatrician was saying, “Oh, that’s what all kids do. Or maybe it’s just a slight delay,” and not taking the parent seriously.

Jen  7:17 
Oh, for sure that mama gut feeling like knowing something is not how you expect it to be and not feeling heard. That has got to be one of the most frustrating things for families I’m sure.

Erin  7:30 
Autism and really anything mental health related as well, it’s just so interesting because there’s no tests you can just do to say this is what it is, you’re looking at, you know, symptoms and characteristics to diagnose and every doctor is going to see things differently. But for those of you that have followed Unexceptional Moms and know that Anya has Down syndrome, since we’ve come back she’s also been diagnosed with autism and yeah, it’s very, it’s a very interesting thing because even I struggled a little bit with that diagnosis. You know, I say,” Oh, I knew she had Down syndrome. Hahaha.” And then when I got hit with autism, it was like, Oh, and I think for me, I was just sad for her. Like, I just, I wanted her life to be as easy as it could be. And considering that she also had Down syndrome, and so I was sad for her at first. And now I’m really, you know, I think we all just need a time to come to peace with it in our own minds, right? To see that really the child you had before the diagnosis is the same as the child you have after it. And it’s helped us understand so much more about Anya and why she does the things she does, and so it’s been a good, it’s been a good diagnosis, even though it’s not one I was exactly hoping for her.

Ellen  8:57 
And don’t you think that the beauty of a diagnosis is it does open the doors to have more help, and services, and connections?

Erin  9:07 
Yes, definitely. Definitely.

Ellen 9:11 
So when we talk about what parents need most upon diagnosis, Jen, you mentioned the first thing before is to feel heard and understood.

Jen  9:23 
Absolutely. Yeah, I really feel like that is such a key piece to all of this, regardless of what your child’s diagnosis is and when it happens. I think parents sometimes just, they don’t even know what they don’t know, or what they do know sometimes about what it is. And so having somebody really hearing them and understanding the concerns or thoughts that they’re having, as parents and how they’ll support their child, I think is just key. And we get questions a lot about whether we should find a pediatrician or a doctor or specialist that’s an expert in Down syndrome and whether that will really help their child and their family through navigating all the medical things. And our experience was that I felt so much more strongly that I just had a medical and care team and providers that understood me and our family’s needs, and understood Owen and just really wanted to walk the journey with us and meet his needs as they came up. Obviously, still knowing all the things that could come up and being, you know, well read about it and about the research, but just I didn’t need an expert in Down syndrome. I needed an expert on knowing how to care for families effectively and to just listen and work as a team to help us through anything that might come up medically. I think that just probably speaks to everything, just really feeling like you’re heard by medical providers or professionals or whatever giving that diagnosis so that way, they can better meet your needs and better help your family along the way.

Ellen  10:54 
Erin, did you feel, just recently because you went through the autism diagnosis, did you feel like there were times where you were heard and understood, or not?

Erin  11:05 
Actually, we got connected with a doctor who was amazing. And so we had a really positive experience with her diagnosis. He was just very compassionate and answered our questions and didn’t treat us like our questions were dumb or, he was just really phenomenal and he made that experience really good for us.

Ellen  11:35 
The other thing that parents need is, access to information.

Jen  11:40 
Access to information, I think is so critical, but it has to be on the parents terms. Because I feel like sometimes with whatever the diagnosis is, a medical provider, they’re thinking about it maybe from their point of view, and so they feel like they need to download all the information, give you all the brochures, handouts, everything, when you may, as a parent just be sitting there digesting this fully for the first time. Surely there are some times that people are going into an appointment that they don’t even know, that maybe a diagnosis has been established, you know, they might just be hearing it for the first time in those moments. And so, you know, as a parent, you don’t need to hear all of the things that you possibly are going to need to know over the lifetime of your child in that same conversation. And I think that’s the part that gets mumbled jumbled mixed up somehow, sometimes with medical providers because they know that their job is to give you all the information and to be the giver of information. But they don’t always, I think, sometimes think, “Oh, I do this all the time and I talk about all these things all the time. But this parent, this is their one child that has this one diagnosis, and this is their moment to let everything settle and think and, you know, do they need to know that maybe there’s a higher likelihood of Alzheimer’s for this child with Down syndrome in a few decades, probably not right away,” Right? They need to know what they need to do to triage and those moments that in those first months and weeks, so I think that’s the boat that sometimes gets missed. And then the other part that gets missed is the inaccurate information, which, you know, that is like a whole nother can of worms also to unpack, but everything you know, is getting really getting back to that first point of understanding the parent. And, you know, if you are doing that fully and everybody’s working as a team, then I think that that access to information becomes even easier because they’re able to ask some coaching questions and find out like, where you’re at with things, where’s your head space at as a parent coping or dealing with this new diagnosis and what should they be giving to right away, and what should they maybe hang on to and set another appointment or check in on you in a few weeks, another few appointments, whatever that looks like. But that fire hose approach I think we find from every parent, it’s just not effective, because we probably all with all of my children’s things that I’ve had going on, when they hand you that stack of materials or brochures or, you know, websites to look at, I still have a whole box of information about Down syndrome.

Ellen  14:18 
What I wanted to add is that so often, when you get a diagnosis, you get the whole list of everything your child will never do. And I feel like that is also overwhelming because, you can’t say that about every kid.

Jen  14:35 
Exactly.

Ellen  14:38 
Every child is so unique, that there might be some things they can do. But as a parent, you’re dealing with a diagnosis. A lot of times you’re dealing with significant medical issues that are the priority, right? if your child is sick or has a heart defect, or maybe they have a lowered immune system, or maybe there are some other very immediate concerns. You pile everything else that from a medical standpoint your child may never get to do, and I feel that’s why so many times a diagnosis feels so negative and so overwhelming, because it is presented in a negative light, right? I just spent Monday at Mayo Clinic all day and the medical model is, really, kind of ableist, right? Disability is really bad, we have to fix it, it’s not the way of things. And when you’re a new parent dealing with the diagnosis, it’s so much to deal with when all you need someone to say is love your child, if you have a baby, take care of your baby.

Jen  15:42 
I think that’s so key. And that’s been one of the things that we’ve been working really hard at DSDN and on, is making those conversations with medical providers, just making them more aware of how parents are hearing all of that, as that information comes in and just letting them know what that implicit bias they might have is towards ableism. So that way it’s just kind of at the forefront of their head of, “Okay, I could say it differently.” Instead of saying, I’ve got some bad news for you, I’ve got some unexpected test results, I’ve got something unexpected for you. So that way they, you know, they’re setting the stage differently because a parent reacts differently if you, if I tell you, “Gosh, I’ve got some really bad news for you. Like, it’s not the, you know, whatever we’re hoping for,” or, “Gosh, something came back unexpected on your test result. Can we talk about what this looks like?” And it just sets that tone, like you guys were saying, when you go in and hear those conversations from medical providers, having that tone set effectively, I think changes the trajectory for how parents cope with whatever they’re going to hear. You know, if they’re hearing just negative thoughts to begin with, and that’s where a parent brain goes, because then I’m more concerned like what is this doctor really trying to tell me? How bad can this be if they’re saying they’ve got bad news for me? I think that’s one of the struggles that we hear parents still having that conversation with their providers.

Erin  17:06 
I think that it’s important to know that all parents, and we kind of discussed this before we started up, come in with their own ideas and feelings about things that, so the example I used is that when Oksana was diagnosed with her mental health conditions, the only thing I knew about mental health going in was what I learned on TV and movies, which is false, and it is where stigma comes from. But I didn’t know that, I thought that’s what mental health was. And so a provider being able to give the truth about a diagnosis, because you just never know what people are coming in with, but one bad experience, and I’m not going to share it on here, but I had, I knew someone that was the extreme of a bad experience. And so in my mind, that’s what her diagnosis was, and I had to seek out knowledge and information in order to get the truth about what that diagnosis was. But we all come into this with our own experiences and preconceived notions. So I agree with you that a provider can really set the stage for that, and shift our minds from the get go.

Ellen  18:21 
And I think this easily takes us to what parents need most are connections to resources. And Jen has added also, as the parents are ready.

Jen  18:33 
Yeah, I think that parent ready piece, let that fire hose of information just can’t be how parents get the information. And I think just providers thinking about how do we put this into steps for people? How do we give them all of those connections? Because I think, one I know you guys, this is how you met too, you know, the peer connections and connections you can make with organizations and resources and people is just incredible. And I know in our Down syndrome community especially, I mean, in what other place can you reach out to true experts in their field who are focused and studying and researching to make our children’s lives as amazing as they can be. You can like email them, or message them, and they like respond to you. Because they so deeply care about this, you know, it’s just a community that’s unlike any other that I’ve experienced or heard about. So, you know, getting all of that access to parents for that information and resources, when they’re ready for it, I think is just so huge for all of them. And there’s so much out there. I am so grateful for technology and resources, because I know families that went through all of this decades ago, I mean, how isolating it was for them to go through some of these things. But gosh, if I have a question about anything that’s going on with Owen or any of my kids, I can pop it into a group and within you know, five minutes I’ve got answers and information and resources and people to call. And it’s just, it’s the best part of this journey, is meeting all of those people. So helping people get those connections and resources when they’re ready, I think is just one of the biggest pieces of this that’s sometimes missing for families.

Erin  20:15 
And for all the negative that social media can bring, that’s been the one big positive for me. You know, some days I want to just ditch Facebook, but that’s, I am on a group for achalasia, which is a condition that Anya has, I’m on a group for Oksana’s, mental health conditions. I am on a group for cerebral palsy. I’m on a group for Down syndrome, you know, and when questions come up those moms those dads, those parents are the ones that have lived the experiences that support me, you know.

Jen  20:47 
Absolutely, it would be cutting off a lifeline.

Ellen  20:50 
When Nicole was born with Down syndrome, and that’s when we told people that she had Down syndrome was at birth, we didn’t say when I was pregnant that it was possible our child what’s going to be born with Down syndrome. But what I found overwhelming is that everybody I knew, who knew someone with Down syndrome was reaching out to us saying, “My neighbor’s son has Down syndrome. Here’s my neighbors number.” And I was given all these numbers for people to connect with him. But for me, I was not going to call a random stranger. However, I do remember going online, Google back in the day before Facebook, really, and finding a message board. And I may, I took that first step. And I think I needed that. And I do wonder how often, we kind of make those connections to other parents, you know, like, we don’t have a child with, let’s say, autism. Like I don’t have a child with autism. But if I have a friend, I could be like, “Hey, here’s Erin’s number.” Well, they don’t know Erin, and to call a stranger just to ask questions is really overwhelming. However, for me, I got so many of those phone numbers given to me. “My neighbor son’s child has someone with Down syndrome.” I didn’t know what to do with it. And I felt like I was supposed to be very grateful and say, “Oh, thank you so much,” when in reality, I just wanted to say, “I will never call them,” and maybe eventually I would have, because although there was no Facebook, we did have those message boards and there was social media in some way. But that to me in itself was overwhelming, although those people were resources.

Jen  22:39 
I think it’s so interesting too, because I had the same like, and I really didn’t tell very many people either that we had a likely diagnosis. But one of I used to teach with, she knew somebody that came into like the store she worked at that said, “Oh my gosh, you need to definitely call Bonnie,” like, and so I was like, “Okay, I’m going to call lady I don’t know,” And, it was, I still to this day, like you all know, you remember those first connections that you make so deeply and those strong connections and I, sitting and talking with her that night was the first time that I felt normal in several days. And I was so glad I did it because I mean, I’m outgoing, but I also like that really seemed weird to me also. But, I just remember thinking, oh my gosh, that was maybe the first time I even really cried about it because I felt like I was in this comfort zone of like a huge hug over the phone. Like she was like, “No, I totally get it.” And her little guy was just a little older than Owen so she really had been through it. But it really was deeply interesting. When I think about my other son who had Eosinophilic Esophagitis, which is a lovely term for like some GI allergy junk had going on. But with him and his diagnosis, I found some other families that were going through it, but we were in such desperation mode of getting him well at that point, that I was willing to contact or call anybody I didn’t care if I knew them, who knew them, I was in a different mode with him that like I needed all the information right then in there. With Owen I really didn’t, I just wanted to continue my pregnancy, no I wasn’t having an alien baby with this no nasal bone and all this stuff. I just wanted to know what our life was going to look like. With Andy and his condition I needed to know he was going to survive this and how we were going to help them survive it. So you know, I think depending on what that diagnosis looks like for your kiddo, it just, you want that information at different points and you’re willing to do things for them that you might not ever do in your normal life, like reach out to stranger A and just call them or text them. So I think that’s really key for parents to hear too, like do you, do it the way that you need to do it in that moment and you might feel differently in another week. Because I think we’re all the same once you know somebody in the Down syndrome community, you become the go to person for like everybody to contact potentially and so, you know, people are handing out your number and your information to those people. So, just being open and willing, I think to talk when people are ready for it and calling people if you really need it.

Erin  25:14 
And we’re talking a lot about other parents, who are invaluable because, being a parent and not having the disability yourself, it’s important to connect with other parents, but I don’t think we cannot not discuss the value of talking to adults and people who live with the conditions and disabilities that our children have. So, the achalasia group that I’m on — so achalasia is also an esophageal kind of condition, GI thing — it’s all people who have achalasia. And so, I can’t understand what achalasia feels like and Anya can’t explain it to me. So I can go on there and say, “This is what she’s doing. What do you think,” and that’s invaluable to me. Or I’ve read a lot of memoirs on people who live with varying mental health conditions. So I can get a perspective from an adult who lives with it on what might be happening in Oksana’s brain. That’s so valuable to us.

Ellen  26:17 
And I think anybody who ever hears me talk, that’s one of the first things that you say, “you have to connect with actually disabled individuals.” And I have a daughter with cerebral palsy. And the best thing I’ve ever done as a mother is to connect with adults in her community, and for her to have those conversations with them as well because she’s come home, maybe she had a hard day at school, and I want to talk to her about it and she’ll say, “Mom, I know you care, but you don’t know what it is like.” And I think that is so true. I don’t. my body does not have cerebral palsy. So I don’t understand. I don’t understand why sometimes she might feel self-conscious because I’ve never had her body. I don’t understand what it feels like when people stare at you. I know what it is like as a parent when people stare at your kids, but it’s different when people stare at you. So even on one day when we were at Mayo, she made a comment. And one of the doctors dismissed it. And at this point in the journey, I said, “Wait a second,” and I looked at her and I said, “What you say is valid, and we are going to honor it a respected because you are the only person in this room who has cerebral palsy. I don’t” and three other doctors, “They don’t. So it doesn’t matter what we say. But it does matter what you have to say.” And I wanted to validate that but honestly, I don’t think I would have ever said that if I had not connected with adults in her community. And I’ve learned, I mean, even her self-esteem has changed because she knows it’s not just her with cerebral palsy, there’s a whole community. And the older she gets, she’s 13, the more she can connect with those people herself. Eventually, it’s the point where I’m just going to be learning from my kid. And I still can learn from my kid of course, but those connections with adults with disabilities are so great.

Jen  28:03 
How empowering that’s what and Erin, when you said that perspective piece like I mean, that is the key right there because like you both said we can’t know, and just finding those connections to help empower our kids and family members or whoever’s facing a different diagnosis, I think is just key, let them have that voice and, and then honoring it as a parent too, as they’re finding that voice, I think is the other balance sometimes, but that’s probably in raising all kids.

Erin  28:36 
And we’re going to have emotions and feelings. Like I said, when Anya was diagnosed with autism, I felt sad because I wanted her life to be easier, right? Where some people with autism might say, “Don’t feel sad, my life is fine,” right? But that was my feeling as a parent, so going to someone living with autism would help me be better educated and encourage Anya and do a better job of parenting her, really.

Jen  29:08 
I think it’s that walking that walk of really trying to understand people on the most basic levels, like just really trying to, we all want our children to be understood and heard and felt like they have a voice. And, you know if we don’t do that in our daily lives too, especially in these communities where we know, it’s so critical for our kids and our families, I just think it’s a very interesting piece that we don’t often think about it, because we’re just so heads down trying to raise our kiddos. But you know, so it’s I don’t think anything we do intentionally, but when you start to really be intentional about it, like what you just said, Ellen, like, because of those experiences, you felt like you had to respond differently with her in that situation and that you just might not have had. So I think if anybody takes those things away from this conversation, that’s just key.

Ellen  29:54 
Which is the fourth thing that we talked about, right? That all parents need someone, not someone to get my permission, but we need to have permission to feel all the feeling.

Erin  30:03 
Yes. Yes, the good and the bad, because one of the things we discussed is that, we don’t live with these disabilities or, or conditions and so, you, we can’t be expected to have all the right feelings surrounding them. Right. You know, we’re humans, and these are our kids and we love and adore them. So, there’s going to be negative feelings and then there’s also going to be very positive feelings. You know, Jen was using the example of someone she knew that found out that she, but her child was going to have Down syndrome and she was thrilled because she had worked with people with disabilities and she had hoped to adopt a child with Down syndrome someday, and that it should be honored and celebrated just as much as a mother who is struggling with their child’s disability and needs that support. And Ellen, that was really you when Nina, I mean, I’m sorry when Nicole was born.

Ellen  30:58 
Yes absolutely. My dog is barking. (Barking heard in the background).

Erin  31:03 
Welcome to Unexceptional Moms. Where our schools text us and our dogs bark. If you came here for perfection, you’re not gonna get it, you might want to go to a different podcast. Yeah.

Ellen  31:18 
So kind of to summarize, these are the four things that we kind of touched on that every parent needs: we need to feel heard and understood, we need access to information — and when we’re ready to hear it, we need connections to resources as parents are ready, as we’re ready to gather those resources, and we need permission to feel all the feelings. So now let’s talk about after the diagnosis, the hope and the encouragement that we can offer other parents.

Jen 31:45 
Yeah, I think for me, the hope and encouragement of just knowing that all the feelings of everything they’re going through, someone else’s going through that too, and just knowing that they can find comfort in that, even if it’s not, you know, a gold star day in their household, just knowing that other people are feeling that same way. I hope that gives them encouragement to know it won’t always be that way either. And they should give themselves permission also to ride the waves, you know, the roller coaster of how you might be feeling. Just like a person with a disability feels, I’m sure every day, the way they feel, parents go through the same ups and downs just like everybody, we all have great days, we all have days where we wish things were different. So giving ourselves permission to feel all of that, and just get through and do our best and send somebody a little comfort along the way to know that you’re kind of in the same boat.

Erin  32:38 
I would also say it will just become your new normal. And there are some diagnoses that that we’ve experienced that I’ve cried and said I don’t want this to be my new normal. You know, I don’t want this to be her new normal, but it is, and it does become, you learn more you grow more you stretch more and it does become your new normal.

Ellen  33:01 
And there is life after the diagnosis, and there’s so many positives. And I think, I met Erin because of our girls.

Erin  33:10 
Yes, I can name, and I bet any mom with a child with a disability can name people that would not be in their life that they value that are their closest friends, but they would not have met them had their child not had a disability. For me, that’s one of the biggest joys is meeting other families. There’s a bond there that you don’t have with other people.

Jen  33:35 
Absolutely. And it seems so strange but, and we hear that all the time from new families, like even your closest friends and family, they just can’t get it at the same level and it doesn’t mean they don’t love you or love your kid as much but it’s just it’s a totally different kind of relationship that you do need to have in your life. I feel like that just helps you get through whatever you need to get through but it’s truly incredible. The women and men that I have met, and people with Down syndrome that I’ve met on this journey, I mean, it’s, I never never would have been living the life that I’m living right now had it not been for Owen. And you know, my other kids too. I’ve met things, met people and learn new things, with each of them. And it’s just, you know, parenting part of the incredible part of parenting.

Ellen 34:19 
And even if we talk about the disability piece, right, if we talk about our kids, I think all three of us would say our kids, because of their disability, not despite, but because of their disability, have changed us. And I would say they’ve made me a better person and your priorities change, and you start looking at this world going, “Huh? I can’t believe I used to think that was a big deal, or I can’t believe I used to think that was important.” It’s not. So, I feel like our lives are enriched and are better because of our kids and their community. And this new community really, that we were not a part of, that now we get to be allies. Right, and we get to support them and encourage them and so often we want the world to see our kids and individuals with disabilities the way we see them. And we wish that they could get just a little taste of what their life could be like if they had a family member or a friend with a disability because, we are part of the same human race, right? And we all have strengths, we all have weaknesses and we kind of need each other. And so often people with disabilities are dismissed and not taken seriously. People think they don’t have anything to contribute and I think, if it wasn’t for Owen, Jen, there is no organization helping parents deal with a new Down syndrome diagnosis, so just his life has influenced, how many!

Jen  35:36 
It’s truly incredible. I mean, my whole life trajectory changed after having him. Well, after having kids in general, like, you know, it’s kind of incrementally, life has shifted a little bit. But gosh, yeah, I never, at our retreat this year looking out at 700 women sitting in a space, hugging, laughing, crying, hearing them say that they were finally in a place that they could be together and just be themselves and not feel like they had to give, you know, whole litany of where their life had gone before and where they were at now and just be together. It’s so humbling and incredible. And just, I think we all feel like so many parents and people and professionals and people with disabilities have helped us on our journey and really given us a way to cope with things and get onto this path. But it really is just truly remarkable. I think the life that we get to live, and you know not every day is rainbows and ponies, like I will be, I’m sure you are all with me on that same page. You know, there are things that are harder because of this life. I mean it’s just true and, but it doesn’t make it awful, you know. And in the end, I think, gosh, you know, I’m stronger than I ever imagined I would be, and watching some of the things parents have gone through, in, just in general, my whole, just worldview has changed dramatically in the last seven years. And what I see families go through with children in general. They are, I mean, parents are kicking butt every day for their kids and kids who are stronger and more brave than I can even imagine being for what medical things they go through. And it’s just really, it’s really incredible and humbling to be able to be on this journey with them and watch and see. And we all, I think, want to pay it forward to new families because we know what it’s like to be that new parent, hearing something for the first time about your child and knowing that you wanted to hear this or that or be given this or that. I think that’s the coolest part about this. Just being able to pay it forward in any way to new families with whatever the diagnosis is

Ellen  38:03 
And I think for any parent dealing with a new diagnosis, or maybe waiting for a diagnosis. or still years later still, you know, maybe trying to manage this diagnosis, I think it’s good to remind people that this diagnosis, it’s not bad. It’s not good. It’s just different. So it’s going to be a different life. And that’s okay. And we have all the perks that come from this different life, right, which is the community, which is the enlightenment, I guess, of what really matters in life. And like you said, Jen, it doesn’t mean that it’s going to be easy, because sometimes it’s not, but sometimes it will. There are days that you will say, “This was a good day. This was a really great day,” and you almost feel bad for the people who don’t have kids like ours because you know they’ll never get to experience this awesome day. And then sometimes there’s bad days, and part of it is being a parent and having kids and the realities of day to day life, and maybe medical conditions, right, and medical necessities and medical emergencies. And that does make it to be hard. But overall, if you were to look at a big umbrella, and I know that we shouldn’t do that, because every disability is different, but ,disability is not bad. It’s not good. It’s just different. And we get to walk that path. And together, we’re not alone. So Jen, thank you for joining us today.

Jen  39:30 
It was my privilege. I’m honored. So thank you very much.

Ellen 39:33
And thank you everybody, for listening.

Erin  39:36 
Bye.

Ellen  39:38 
Thank you so much for joining us today. If you want the Diagnosis Checklist and the Diagnosis Essentials Organizational Chart, don’t forget to stop by patreon.com/ellenstumbo or ellenstumbo.com and you can click on the supporters tab. And also, if you want to see show notes, you can always stop by ellenstumbo.com/episode31. We are really excited to be back with you and we have some great speakers lined up and we will see you again in two weeks.

Transcribed by https://otter.ai

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