The wishes, hopes, and dreams of expectant parents are many. 

Their baby having a lifelong disability usually is not one of them. 

When that happens, it can be devastating for families. 

The staff and volunteers at the  Center for Family Involvement have family members with a disability. Some of us have disabilities. That lived experience makes a huge difference when providing emotional and informational support to people with disabilities and their families. We understand how complicated the mix of grief, joy, disappointment, and gratitude can be.

So does Heather Trammell. She's the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago. 

She helps parents through the wide range of emotions that flood them after they learn of their child's diagnosis. Heather also sees time and time again, families coming out of the dense fog of grief bursting with pride and happiness. 

In this two-part interview, Heather shares how her job has evolved with the rapidly changing media landscape and talks about how toxic the high-functioning/low-functioning mindset can be. 

 

The Odyssey: Parenting. Caregiving. Disability. 

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 

 

TRANSCRIPT:

01:00:07:18 - 01:00:36:07

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle the creator and host.  The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.

 

01:00:36:09 - 01:00:59:17

Erin Croyle

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff, too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down's syndrome. And how the medical team broke the news to her is both shocking and heartbreaking.

 

01:00:59:19 - 01:01:26:21

Erin Croyle

After the dust settled, Heather became the director of Family Support at the Down's Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastically different families handle diagnoses. She also witnesses countless transformations from scared, sad and confused to happy, fulfilled and proud.

 

01:01:26:23 - 01:01:47:15

Erin Croyle

Heather's love for her work is palpable. She's the first one to tell you that she's a sucker for a changed life. Heather, I want to jump right in and have you tell us a bit about yourself. But I like to do this a little bit differently because I think a lot of us are one person before children and then another after.

 

01:01:47:19 - 01:02:04:06

Erin Croyle

And for us parents who have a child with a disability, that change is a lot more drastic in advocates like you. To me, it's like a superhero origin story, frankly. So can you tell me who you were before children and who you are now and how your daughter's transformed you?

 

01:02:04:08 - 01:02:32:15

Heather Trammell

Well, I wouldn't call myself a superstar or anything. Thank you so much for having me on the podcast. Erin, it's a pleasure to be with you. It's great to chat with you about any subject at all. So I had my first child when I was 35, so there was a lot of Heather before that. And I actually do believe that everything that came before that diagnosis informs that moment.

 

01:02:32:17 - 01:02:55:09

Heather Trammell

So the moment you hear your child has Down syndrome, that's that's a moment in time. But how you feel about that moment had everything to do with all the years before that. I grew up in a small town in Michigan, and two of the things that are significant about my younger years was that I was born with a cleft lip and cleft palate that was continually under construction.

 

01:02:55:09 - 01:03:25:00

Heather Trammell

Now these days, children with cleft lip and cleft palate have this space age remarkable surgery, and it's all done by the time they're in kindergarten. But mine went all the way through college, and so I was just kind of a work in progress, so to speak, as far as my face goes. And so I had to, you know, go to school with surgical scars, lips not applying the right way, nose not allowing the right way speech difficulties.

 

01:03:25:06 - 01:04:00:10

Heather Trammell

And that was really hard. That was hard. Kids are not always very forgiving about that kind of thing. Also, at the same time, I grew up with a bipolar parent who also struggled with her mental health, was sometimes compliant with medication therapy, sometimes not. And the times that were not were very difficult for us. So those two things, I think, are what came crashing to my mind when I heard that my unborn child was going to have Down's Syndrome.

 

01:04:00:12 - 01:04:26:20

Heather Trammell

Then we got that chip off, the ultrasound chip off the day before 911. And I thought September 10th, 2011 couldn't be the worst day of anybody's life. It certainly was the worst day of mine. And then September 11th happened, really, and the whole world was falling apart. I thought, you know, that is that one of the hardest things that's ever happened for me?

 

01:04:26:22 - 01:04:54:00

Heather Trammell

And now I am sure that the second half of my life is probably going to be as difficult as the first. I really had it in my mind that I was happily married. We were expecting our first child. It was all going to be great from now on because I had already checked the box on the hard stuff and I got through it and I grew from it.

 

01:04:54:02 - 01:05:20:07

Heather Trammell

Good. Let's just move on. But that was the first thing that came to my mind when we got that diagnosis. That was a prenatal diagnosis. It was pretty early. It was early enough to have amnio. So the noninvasive prenatal screenings were not terribly were either weren't available or they weren't terribly good back then. So if you're really wanting to know, then get an amnio.

 

01:05:20:09 - 01:05:53:07

Heather Trammell

And we felt like that was worth getting. So we got it. And I had in my recollection, I could be wrong here, but my recollection was I had asked my doctor not to share that news with me during the work day. He had called me with the ultrasound information on September 10th, during the work day, I had a very hard time keeping my brain together in the very busy Georgetown law firm where I worked.

 

01:05:53:09 - 01:06:18:10

Heather Trammell

And so I thought, Let's not do that again. Don't call me at the office. But either I did not tell him that or he forgot because he did call me with the amnio results at the office and I was speechless. Of course, breath taken away and he said, I'd like you to come to my office right away. I stumbled and said, Well, what about Thursday?

 

01:06:18:12 - 01:06:44:21

Heather Trammell

He said, Well, no, I mean, now I'll clear my calendar. Come right now. And I'm like, okay. So I took leave of my colleagues. I stomped my way back up the sidewalk the way I had just come down a half an hour earlier. And it was one of those beautiful October days where the sun is shining. It's not hot anymore.

 

01:06:44:23 - 01:07:11:17

Heather Trammell

You fall is starting to show. It was just gorgeous. And I thought to myself, How dare the sun be shining today? This is really this is not good. And then I got on the train, the subway, which in Washington, D.C., from the north part of Washington, D.C., down to Virginia, you have to pass by the Pentagon station, which at that time was completely closed.

 

01:07:11:17 - 01:07:37:10

Heather Trammell

Then you could still smell the smoke from the Pentagon attack as you passed by. So my mood did not get better all the way at the office. So my my husband and I met at the train station. We went to his office. He sat across his big oak desk with a very serious expression on his face. He didn't say anything like nothing at all.

 

01:07:37:12 - 01:08:02:03

Heather Trammell

We weren't sure what to say either, so we. We just picked things out of the air where we weren't even sure what to ask. We said so is the baby okay? He said, Well, we're going to get a level two ultrasound. Here's your prescription, and that'll tell us more. Great. Am I okay? He said, Oh, you know, your health is good.

 

01:08:02:03 - 01:08:32:05

Heather Trammell

This will not affect your health. Good. And then we're still fishing for things to say. We said, Well, so is it a girl or a boy? And he shuffled some papers and he said, it's female. And in my mind now, my husband is much more generous and thoughtful than I am. But in my mind he had just reduced my unborn child to a tadpole experiment.

 

01:08:32:07 - 01:09:01:20

Heather Trammell

And I thought that was just it was really unreasonable of him medically. Yes, he's right. Female ex-wife. Got your exit? Sorry. Got it. But we were having a girl or a boy. I'm not giving birth to a thing. Giving birth to a real person so we could leave of his office. He didn't give us any other information. No books to read, websites to consult people to talk to.

 

01:09:01:22 - 01:09:29:23

Heather Trammell

That was either because he forgot he didn't know or I'm not sure why he didn't, but or he maybe he expected the maternal fetal medicine people to do that. Whatever his reason was. We spent the rest of the day deciding on a name for our little girl because she was no longer going to be known as the baby or the problem when she was our little girl and she had to have a name.

 

01:09:30:00 - 01:09:55:03

Heather Trammell

So we we named her Elizabeth. And that very moment, she was going to be Beth forever. So we went on with the rest of our pregnancy many days. I woke up in the morning after a nice night's sleep. You know, when you wake up in the morning and you've had a good night's sleep and you feel, ah, you just have that feeling like you have you have done well.

 

01:09:55:05 - 01:10:22:23

Heather Trammell

And then I remembered my situation and then the bottom fell out of my stomach, like kind of every morning. So that was really, really difficult. One of the things I did during that time and in retrospect I would say it was somewhat self preservation. Self preservation being I didn't want to tell other people about our news. I really didn't want to hear what sweet children they were, how God.

 

01:10:22:23 - 01:10:53:01

Heather Trammell

When we give special children to special parents or whatever, I might have thought I was going to hear and threatened my husband with certain death if he told anybody. But we did have lunch with a college buddy of mine and his wife. For some reason I just felt really comfortable with them and I told them our news over dinner and the next day she introduced me via email to somebody she worked with at the middle school where she was a teacher.

 

01:10:53:03 - 01:11:19:02

Heather Trammell

This woman was a special educator at the middle school, and I thought to myself, Well, if we're having a baby with Down's syndrome, I am going to be the best prepared parent known to the free world. And so, yes, I think I had better learn about this special ed thing now. I prepared a whole list of notes, you know, and I went to a sit down with this lady at her home.

 

01:11:19:04 - 01:11:50:02

Heather Trammell

Her family was out of town for a family event. I sat in her living room with my cookies and my orange juice, and I opened up my notebook of my voluminous notes. I was ready. I was not going to waste this woman's time. The first thing out of her mouth was, So tell me your story. And you know what, Erin, we can talk about, especially for the next 4 hours, we can talk about special ed at all.

 

01:11:50:04 - 01:12:12:19

Heather Trammell

We talked about how I was feeling, what I was thinking, what I was excited about, what I was scared about, questions I could ask and get answered for hours. The sun went down and I never ask a single special ed question the entire afternoon because what I really needed was to be heard and to be heard in my heart and soul.

 

01:12:12:21 - 01:12:34:24

Heather Trammell

Eventually, I found out everything I need to know about special ed and more that I didn't want to know about special. You get me, right, Erin? Oh, yeah. So we ended our conversation, and on my way back to the car, I thought to myself, You know, if the world of disability is filled with cool people like her, I think I'm going to like it here.

 

01:12:35:01 - 01:13:02:11

Heather Trammell

And I was right. There's lots of cool people out there like her. And I met them. You are one of them and many others. So I've met some wonderful people in the land of disability. And I think that really started me also on the path of yet another career turn in the road. I swear my resume looks like a meandering silver thread.

 

01:13:02:13 - 01:13:26:15

Heather Trammell

Mm. So I was a music major in college. I was a concert promoter and a booking agent. After I was in college. Then I was a paralegal, and then I was a non-lawyer support professional. And then I was a parent support professional because that's what I just really made a difference to me. How that woman helped me. I wanted to be that kind of help to other people, too.

 

01:13:26:17 - 01:13:44:15

Heather Trammell

And I had already had a little bit of training in that kind of thing, so I was glad to pick up the mantle of leadership in that way. That was 20 years ago, if you can believe it. Like 20 years. This very year I have been serving parents and I've loved every minute of it.

 

01:13:44:17 - 01:13:46:05

Erin Croyle

And you are so good at it.

 

01:13:46:06 - 01:13:52:03

Heather Trammell

Oh, thank you. You're welcome. I even got myself a little 20 European from Amazon.

 

01:13:52:05 - 01:13:54:12

Erin Croyle

As you should. Someone should have done that.

 

01:13:54:14 - 01:13:55:02

Heather Trammell

Oh.

 

01:13:55:04 - 01:14:08:23

Erin Croyle

My goodness. So when you moved on to that role, did that role exist? Did you create it? Tell me a little bit about what you do, but also how you started doing that.

 

01:14:09:00 - 01:14:37:22

Heather Trammell

Sure. Yes. The role did exist before I got there, and the role had been held by several people before me. People who were at that time legends in their own time. When I took over that mantle of leadership, I had a small group of volunteers that were open to be ing, volunteer, mentor parents. And so I thought, Well, I will call all these people and introduce myself that I'm the new director of Family Support and just wanting to introduce myself.

 

01:14:37:24 - 01:15:00:08

Heather Trammell

And every time I probably could, 80% of them said, Oh, wow, that's really nice. Warm welcome. It's nice to meet you. Oh, you know, Amy, I love Amy. She's just the best. She was there when my little boy was born. And I thought to myself, Oh, my. What kind of shoes are my stepping into? I was a little bit.

 

01:15:00:08 - 01:15:27:02

Heather Trammell

And I was excited, but a little bit intimidating. Right. One of the things that was really instructive to me at that time was that I was noticing so many parents at that time. Now we're talking this is 2003. We're not getting in touch with our organization until their babies were six months old. And I thought, Oh, well, that's just really shouldn't they have gotten in touch with us earlier?

 

01:15:27:03 - 01:15:55:00

Heather Trammell

I mean, not everybody had great Internet access at that time. Our website at that time was really not that good. It wasn't verifiable. So, of course, I mean, maybe people just didn't know about it. So I went to the director of the organization at that time and I said, Hey, what is up with this? Why do people not call us until like six, nine months after their babies are born?

 

01:15:55:02 - 01:16:21:02

Heather Trammell

She said, you know, I think I wouldn't worry about that so much as what I would focus on is you go make this the best it it can be. You be the best you can be so that when they call and they will, that you are there for them being the best and giving the best that you have for them.

 

01:16:21:04 - 01:16:44:20

Heather Trammell

And I took that as my marching orders. I did a little bit of revamp to that program. I was glad to get tremendous advice from other parent support directors around the country and learned a lot from them to implement into that program. So, yes, it did exist before I got there. And yeah, I did tweak it a little bit as time went by.

 

01:16:44:22 - 01:17:08:11

Erin Croyle

When we think about parents that are just getting a diagnosis, whether it be Down's syndrome or cerebral palsy or any of the other things that go on, you know, the rare diagnoses too, as some of my friends have told me, we don't have a club. Right. What I do love is that we help anyone who needs help because so many of our experiences are similar.

 

01:17:08:13 - 01:17:20:05

Erin Croyle

You're able to reach so many parents at such a vulnerable time. Can you talk about some of the different reactions you've seen throughout the years?

 

01:17:20:07 - 01:17:46:23

Heather Trammell

I think it's a good idea to remember that you never stand in the same river twice. So even though I can sit here and tell you that some of the stories I've heard are are very common or even repetitious, I mean, some things are just so common. I could almost write other people's birth story, but I never stand in the same river twice.

 

01:17:46:24 - 01:18:14:23

Heather Trammell

I'm not the same person now as I was 20 years ago. Being the brand new parent support director and the parents that I meet now are certainly not the same people that they were then. First of all, the child rearing years of the people I meet now, I mean, these people grew up on the Internet. They grew up with cell phones and social media accounts.

 

01:18:15:00 - 01:18:39:14

Heather Trammell

They are very, very well connected. So a lot of times when I meet a new or expectant parent for the first time, they have already done quite a bit of Internet reading. They have maybe gotten in touch with some other parents via social media. I'm just another step on the train. So a little bit of a difference now from back then.

 

01:18:39:15 - 01:19:06:00

Heather Trammell

So 20 years ago, maybe there wasn't really anything for them to go look at, really. And it certainly wasn't very cheerful. I think in the twins or anything before the twins, you could find some websites about Down's syndrome and you're sorry you looked it, which is really not very cheerful. They were very medical based, not telling you anything about what life was like with Down's syndrome.

 

01:19:06:04 - 01:19:45:08

Heather Trammell

And if they did, it was gloom and doom. Nobody wanted to hear that. So some of the parents I've met now have definitely got a lot more homework before they get to me. And if they have a prenatal diagnosis, they're going to have that information through noninvasive prenatal testing. So much more now than ever before. So back in 2000, the noninvasive testing you could get was an AFP test, which was accuracy was always never very good.

 

01:19:45:10 - 01:20:07:16

Heather Trammell

So you actually really hardly could take that seriously. Back then, the noninvasive prenatal testing is now is quite accurate. So we just take it as, yeah, you're having a baby with Down's syndrome even though you didn't have a normal or serious test. So people know a lot beforehand. Sometimes I used to still go talk to parents who are surprised at birth.

 

01:20:07:17 - 01:20:35:12

Heather Trammell

Some parents just refuse prenatal testing on moral grounds. They are not interested in getting that information. They are scared of any risk to their child's health at all. They just want to have a happy pregnancy. She or they are just convinced that there's just no way in the world they could ever have a baby with Down's syndrome because A, B, C, D, you know, go on with whatever reason they thought.

 

01:20:35:14 - 01:21:05:24

Heather Trammell

So I do find parents to be a little bit more prepared by the time they talk to me. They have tested the waters in social media about who there are. People are, so to speak. So back in 2000, you could call Heather Trimble and you were. You just really hoped that she was a really nice person and that she was going to answer your call because you really have any idea what kind of moron I was?

 

01:21:06:00 - 01:21:25:02

Heather Trammell

I mean, you had really good. No. But now they have all already been a part of social media circles and they have already met people virtually. And they kind of know, well, I like these kind of people. Are my people. These kind of people are my people. And then by the time they get to me, I guess it matter like whether I'm a jerk or not.

 

01:21:25:02 - 01:21:48:21

Heather Trammell

I mean, they're just like, well, let's just get the local people on board. I am as much of a social media freak as anybody you will ever meet. I can spend hours on Facebook just whiling the afternoon away. I'd learn good luck. I've met people. I have become a better parent, a better person. I learned so much through social media.

 

01:21:49:02 - 01:22:20:10

Heather Trammell

There's still something lost by not having in real life people to talk to. Even during FaceTime or Zoom. When we say it out loud. She's somebody else. My child has a disability. I think that helps us move down the road in a way that social media doesn't have. Social media, we can be anybody we want to be. We can feel any way we want to feel.

 

01:22:20:10 - 01:22:37:23

Heather Trammell

We can curate any way we want to. But when you're actually with somebody, you have to look them in the eye and tell them, My child has a disability. You say it out loud. I think that helps us move forward in our parenting a lot.

 

01:22:38:00 - 01:22:57:03

Erin Croyle

I love that you said that. I think about social media sometimes in the work that I do with my colleagues. You know, we make sure that we're meeting people on social media. I find myself having a difficult time wanting to interact with someone in real time because we do it so much less now.

 

01:22:57:05 - 01:22:58:06

Heather Trammell

No.

 

01:22:58:08 - 01:23:12:18

Erin Croyle

But at the same time, I still remember at Down's Syndrome Association of Northern Virginia, DSM-V, I think it was a Christmas party or a spring party or whatever. I met my people.

 

01:23:12:23 - 01:23:13:23

Heather Trammell

I met a whole.

 

01:23:13:23 - 01:23:35:00

Erin Croyle

Group of people and all of our kids were babies and they just laid on the thing together and we became friends. And what was beautiful about that is that in social media you find your people and you find your bubble. But in this group of people, we had all these different ideas and opinions that we could share and they weren't bubbled, right?

 

01:23:35:01 - 01:23:42:08

Erin Croyle

We knew we could we could share different opinions. And when you meet someone in person, like you're saying, it is a different dynamic because.

 

01:23:42:10 - 01:24:06:17

Heather Trammell

You know, am I saying it's better or worse? I just think it's a it's a nuance we really miss if we don't get together in real life. Now, that being said, thank God for social media because there are people who live way out in the very far western part of Virginia. I don't even know what road they go to to get to the store because they are just so far out there and they're not going to be.

 

01:24:06:18 - 01:24:32:02

Heather Trammell

There's not like the monstrous Girls and Girl Association of Northern Virginia or the gown, you know, Virginia Gown Singer Association, which is really big, too. If you live within two miles of the Virginia border out west, there's not a lot of girls and girl existence out there. So thank God that there is social media connections for people who aren't able to be a part of anything in real life.

 

01:24:32:04 - 01:24:55:19

Heather Trammell

And there are I mean, certainly there are some parents who are immigrants, recent immigrants in the United States. They're not very confident about their English. They spending the entire afternoon with people speaking English without them is going to be very, very difficult. And they are able to Google translate things that they're on the Internet, so they feel a little bit more comfortable.

 

01:24:55:21 - 01:25:06:02

Erin Croyle

I think the beauty of that, too, is because we have really strong organizations across Virginia. For instance, you could send someone to the Center for Family Involvement. We have a.

 

01:25:06:02 - 01:25:07:03

Heather Trammell

Rural.

 

01:25:07:05 - 01:25:37:04

Erin Croyle

Right. We have a rural specialist who lives in southern Virginia who can speak to those issues we have. One of my colleagues is specializes in refugee support and she has multilingual staff members. We really make an effort between all of the organizations across Virginia to really support any family that comes our way. I think military families, really it's a hard time for them because they have to learn systems in whatever state they transfer into.

 

01:25:37:06 - 01:26:03:06

Heather Trammell

Certainly. And and conversely, I have a hard time understanding their system, too. I think whenever I hear the word TRICARE, my eyes glaze over because I don't really understand that system very well. And I have no I've I've hardly moved ever in my entire life, but my military friends move all the time. So I do feel for them to every every demographic is going to have their challenges, I think.

 

01:26:03:06 - 01:26:11:19

Heather Trammell

And we are definitely glad to I and we are glad I could definitely support anybody from anywhere. Yeah.

 

01:26:11:21 - 01:26:42:09

Erin Croyle

Yeah, yeah. And I think the the beauty of the parent to parent support that a lot of groups like ours and yours offer is that we've been there that lived experience we understand the urgency we understand these feelings. I think it's very important that we have that support because I know that in the professional circles when you have to go to say, a community services board or even early intervention to some extent, you know, the people are wonderful, but they don't really understand what you're living.

 

01:26:42:11 - 01:27:06:20

Heather Trammell

At all right. Right. You know, what's really funny is that sometimes, even to this day, and I'm not sure why it is, but sometimes I will talk to newer, expectant parents and they'll say, oh, well, do you have a child with Down's syndrome? And to me, in the one part of my brain, I'm thinking, Well, yes, of course I have a child with Down's syndrome.

 

01:27:06:20 - 01:27:26:21

Heather Trammell

Why do you think I do this? You know, of course I have a child with Down's syndrome, but somehow, somehow they think I'm a social worker or something. I don't know if that's my lovely voice or they hadn't thought about it or I don't know. But I'm like, Yes, I, too have been on this path where you are.

 

01:27:26:22 - 01:27:51:23

Heather Trammell

Now, one of the things that I, I try to remind myself not to say is I know how you feel now. I know how I felt when I was at your point, but I don't know how you feel because I don't know you and all the 30 some years that came before you found out your baby had Down syndrome, that informs how you feel at that moment.

 

01:27:51:23 - 01:28:15:22

Heather Trammell

As I was saying with my own story, I know how you feel is totally not totally, but largely dependent on who you were before that moment. And I don't know that. So I want people to know that I have been in this spot before. That doesn't mean I know you, but I know I know how this spot looks because I've been there.

 

01:28:15:24 - 01:28:49:00

Erin Croyle

And let's talk about that spot because I think that grief is something that probably most parents experience. And I know that a lot of us experience it through different parts of our life. But I think that the people you're seeing and the people that you're helping, the new parents, it's that grieving of the parenting experience you thought you were going to have and realizing the milestones that are going to look different than non-disabled siblings and cousins and friends.

 

01:28:49:02 - 01:29:16:16

Erin Croyle

You know, one of the hardest things we have to face is that you could potentially outlive your child. There are these things I know in my own experience before my son, my first child, I didn't have to deal with the medical community. I didn't understand doctors, you know, doctors. I took them for their word. So it was this massive amount of grief compiled with this mass amount of information I had to take in.

 

01:29:16:18 - 01:29:20:19

Erin Croyle

And so those first months.

 

01:29:20:21 - 01:29:21:10

Heather Trammell

Yeah.

 

01:29:21:12 - 01:29:43:17

Erin Croyle

When you were talking about like not wanting to talk to anybody, I remember telling people when my son was first diagnosed, he was diagnosed after birth and it was very confusing time. There was a test that came back and first he had it and then he didn't. And I don't I mean, that's a whole podcast in itself, but.

 

01:29:43:19 - 01:30:01:06

Erin Croyle

Right. Yeah. I remember telling people, Please don't blow sunshine up my ass. Right. Like, just don't I know it's going to be okay one day. I get that. But right now I just need to feel what I'm feeling. And I remember. Right.

 

01:30:01:07 - 01:30:28:06

Heather Trammell

And I know you could not be more right. I have heard it many, many times throughout my years in serving parents that they have had it with the unicorns and rainbows stories that they hear on the Internet and they're like, just give it to me straight already. Now, some people want unicorns and rainbows. I'm like, okay, that's fine.

 

01:30:28:08 - 01:31:02:00

Heather Trammell

They don't want to hear about the medical concerns that they might have to deal with. They don't want to know how arduous special education is. They just want to have them enjoy their pregnancies, enjoy their new babies. They want to hear how life is beautiful and life is beautiful. Nothing. It's not. That's what they want to hear. But other parents feel like that is, as you so eloquently put it, blowing sunshine up my ass and they are like not having any of it.

 

01:31:02:02 - 01:31:08:21

Heather Trammell

And they want to hear. They want to hear the whole story, not just one part of it. They want to hear the whole thing.

 

01:31:08:23 - 01:31:24:11

Erin Croyle

So what would you say with 20 years, Heather? You mentioned before some of the commonalities and something you see a lot of the time or most of the time. But can you run through sort of the gamut of different reactions when you welcome new parents?

 

01:31:24:13 - 01:31:52:00

Heather Trammell

Sure. I mean, when I whenever I pick up the phone or see a new email come by, I'm always a little I have a little bit of trepidation because I'm like, I don't know who's going to be on the other end. How are they doing? Fortunately, having grown up with a bipolar parent, I have become pretty good at reading between the lines with people when they tell me they're doing great.

 

01:31:52:02 - 01:32:19:02

Heather Trammell

I'm like, okay, I'm accepting that at face value. I don't know that I necessarily believe it, but I don't believe it because of all the other things you said. But we'll just take it at face value. You think you're doing great. That's good. Some parents are doing just fine. They really do not have that excessive grief that can really happen with other parents.

 

01:32:19:04 - 01:32:44:15

Heather Trammell

That is because I think in my experience, I've seen the parents who do not experience that kind of grief or loss. Feelings are parents who are just so excited to have a baby at all. Egal care whether their baby has Down syndrome or Up syndrome or Sideways Syndrome, they don't care. They're just so excited to be parents. They are great.

 

01:32:44:16 - 01:33:20:10

Heather Trammell

They will just take any baby at all. Parents who adopt have already low times done their homework on Down's syndrome. Not always, but most all of them have. And they're prepared for the idea that their child has a disability. They've already got that. There are parents I have met who want all the information right now. They open the fire hydrant for them and they want everything they want to know about Medicaid and Social Security, and they want to know about early intervention, every single medical thing that happened.

 

01:33:20:10 - 01:33:48:01

Heather Trammell

And they want to know right now, other parents do not want to know hardly. They don't want to talk about Down's syndrome at all. They may not believe the baby has Down's syndrome until the blood test comes back, which is they're like, they're not going to call me until the blood test comes back. Other parents call me from their hospital beds and they're not even out of the hospital yet because they want to get connected.

 

01:33:48:03 - 01:34:20:05

Heather Trammell

Some parents want to hear stories. They want to know what life, daily life is with Down's syndrome. Others do not just want the facts, like the medical practical facts, like what tests we need to do. What tests do we need to do? Who I need to call. They really don't want to hear about other people's stories. So every parent is just really, really different.

 

01:34:20:07 - 01:34:39:08

Heather Trammell

Some are, well, almost all not seriously. All of us are shocked, right? I mean, we're all surprised that we can actually sit out and plan to have a baby with Down's syndrome. Hey, honey, let's have sex. Can I maybe we'll have a baby with Down's syndrome if we get down our heads by the Atlantic Ocean at midnight, you know, kind of thing.

 

01:34:39:12 - 01:35:10:11

Heather Trammell

Like they want to have a baby with Down's syndrome, and they're trying. So most of us are very surprised whether you get it prenatally or positively. Sometimes the the feelings are of surprise are very much the same between a prenatally diagnosed parent or a postnatal diagnosed parent. But with the slight nuance that the prenatal diagnosed parent hasn't met the baby yet, they can't see that they have my eyes and his nose.

 

01:35:10:15 - 01:35:36:01

Heather Trammell

All they know is a diagnosis. That was all we knew when we were pregnant. She has diagnosis, but then she was born and we're like, Oh my goodness, you're just like him. She's got my hair. And she then looks she looks just like him. And everybody thinks they look just like him to this day. And and and we don't know what their personality is like.

 

01:35:36:03 - 01:36:13:23

Heather Trammell

I think that's that's a little that colors that colors the surprise when it's prenatal versus postnatal. The challenging things about postnatal hours that you're getting all the information right when you are postpartum which is such an physically hard August. Physically, emotionally, mentally, every other way. Postpartum is hard for a woman and in general, and then you have all this information to absorb, whereas the prenatal prenatal diagnosed parents may have almost always got that information.

 

01:36:14:04 - 01:36:52:06

Heather Trammell

They already know to ask the doctor about a heart defect. They already know what phone number to call for early intervention. They've they've got that. So that's a little bit of difference there. Most everybody is surprised. Not everybody is shocked and disappointed. How we feel about it would be some kind color by culture because some of my foreign born parents, their their home country culture affecting how they feel about their baby with Down's syndrome because this this this, their experience.

 

01:36:52:06 - 01:37:06:00

Heather Trammell

And they knew about people with Down's syndrome in their home country, but they don't know what it's like here. So sometimes that will color their how their grief experience or their surprise at having a baby with Down's syndrome.

 

01:37:06:02 - 01:37:13:22

Erin Croyle

How do you help families who are stuck in that grief cycle pull themselves out?

 

01:37:13:24 - 01:37:39:04

Heather Trammell

I think parents for calling, as that is the first step of of moving forward in the universe is just picking up the phone. It weighs £9,000. So you should you should be congratulated for calling. You should be congratulated that you have a baby with Down's syndrome. So congratulations on your new baby. I've met very few parents in my life.

 

01:37:39:06 - 01:38:08:15

Heather Trammell

20 years of service. I can count on maybe one hand the number of parents I think have not ever moved forward in their life with Down's syndrome. I just believe in parents. I believe in parenting. I believe that parents will pull themselves together. I just have faith that way. Now, how I help them do that, I hope by listening to their stories.

 

01:38:08:17 - 01:38:30:13

Heather Trammell

Tell me about your story. That's what made the difference for me. And I want to hold that space for them. Let them tell me about their story, how they're feeling, what they're thinking. They may or may not share all of what they're feeling or thinking because they are so disgusted with what they feel or think, or they think it's awful.

 

01:38:30:15 - 01:38:54:05

Heather Trammell

Why would I say it out loud? I don't want Heather to think I'm a moron. Whatever. They don't want me to think badly of them because of what they may be thinking or feeling. The news is, though, that I have probably thought or felt it myself already, so it's not going to be a real shock to me. And in 20 years of service, I'm pretty unshakable, too.

 

01:38:54:05 - 01:39:19:08

Heather Trammell

I've heard. I've heard it all. You can't mess me up, you know. So I hope that they will that when they share their stories, when they say it out loud that their child has a disability. I think that is a great first step. Just say it out loud. Other great steps are to and this will be increasing in bravery to meet other parents.

 

01:39:19:10 - 01:39:49:10

Heather Trammell

So I will meet. I will have them join our email group. I'll suggest a Facebook page. I will invite them to new parent breakfast so that they can meet other parents. And I think that so so makes the journey better. You mentioned get yourself when you all you and all your baby, you got all your babies. They're all the quote at the picnic and you realize that you are not alone.

 

01:39:49:12 - 01:40:16:14

Heather Trammell

You had you had similar experiences. And you can look at each other in the eye and you you just know you're going to be okay because you're not by yourself. And I think I think isolation would make parenting harder, I think not moving forward in this journey. Isolation would keep a parent from moving forward. So I want to invite a parent to get out of isolation, to poke their head up above the rabbit hole, so to speak.

 

01:40:16:16 - 01:40:50:17

Heather Trammell

Now, I'm going to talk, right, because I'm the one who threatened my husband with certain death. If you told anybody that we had we're having a baby with Down's syndrome. So I recognized that that may take time. You know, it may not be the first indication I give you. It may not be the fifth invitation that I extend but eventually, when they when they do, I see so much positive forward motion in meeting other people online, if you must in real life would be great, too.

 

01:40:50:19 - 01:41:16:18

Heather Trammell

So I think that really does help a lot. I think it helps parents move forward when they can see either through a blog or through what I share or through meeting other parents that they're so much joy to be had in raising our kids, too. Of course, there's difficult things. I am not going to gloss them over for a second, let me tell you.

 

01:41:16:18 - 01:41:40:12

Heather Trammell

No, I'm not. But there's a lot of joy in raising our kids, too. We see their personalities develop. We see how what a positive impact they have on other people. We see us change to engaging. I am not the same person now as I was then. My husband would tell you that I am and I love him for saying this.

 

01:41:40:14 - 01:42:17:00

Heather Trammell

He would say I am. How do you say you're the best version of you you've ever been? Hmm. Well, so I'm evolving. That's great. And so I love to see parents evolve. That's one of the most thrilling things about my work, is seeing parents go from A to B. I there is if I die, someone just put that on my tombstone somehow, You know, she was a sucker for a change of life, you know, And that's what that's what I love seeing is change life.

 

01:42:17:01 - 01:42:41:22

Heather Trammell

Evil people who go from this is the worst thing that's ever happened to me. We will never smile again to. I love it here. Parenting is great. You know, I've seen that happen. I have met parents who, in the beginning were you couldn't get a positive word out of them. If you got any word out of them at all.

 

01:42:41:22 - 01:43:08:04

Heather Trammell

Like they didn't come to Christmas party. Right. They they just didn't. And who gave them time? They eventually came to see the special things they loved about their child. They came to want to have other people see the special things that are true about their child. And they want to share it with the world. It's been fabulous seeing how that I have stories.

 

01:43:08:07 - 01:43:20:20

Heather Trammell

Oh, my goodness, Erin, I have stories when I am very, very old and rocking in my rocking chair. I'll write down all the stories of all the parents I've loved over the years. It's going to be a great book.

 

01:43:20:22 - 01:43:26:05

Erin Croyle

So tell me one of them. Tell me one of your.

 

01:43:26:07 - 01:43:56:00

Heather Trammell

This lady, I knew she had a preschooler at home. She had a new baby with Down's and girl. And I invited her to a very small home gathering. We were going to just view this new video that it came out really small. There was going to be, you know, eight people there, tops. But she brought her family and the hostess of the event had a teenager with girls and girl.

 

01:43:56:02 - 01:44:17:07

Heather Trammell

The teenager was just go. Just a really neat, interactive guy. Oh, he really wanted to meet you, you know, kind of thing. Just really a neat guy. His his speech articulation was very difficult to understand, though. I had to have his mom translate for me because I didn't know him, you know, So I couldn't understand what he was saying.

 

01:44:17:09 - 01:44:36:12

Heather Trammell

We we went to go sit down to view the video and I walked around and this new family was there and I asked the hostess, I say, Wasn't Mary her family just here? I swear I just saw them 2 seconds ago. It's not a big house. She said, Well, I think it was just too much for them, huh?

 

01:44:36:14 - 01:44:57:19

Heather Trammell

I thought to myself, What? Eight people was too much. Wow. Wow. Okay. All right. She's having a difficult time. That's like, all right. Well, over the next year, year and a half, her husband would come and bring the baby to events, but she never came. And I thought, Oh, let me show you, sir. Give my wife your best.

 

01:44:57:21 - 01:45:19:14

Heather Trammell

You know, I just tell her, as it has about a year and a half later, she and I got together for coffee and Engie. She confirmed what was true for me and true for so many other parents. I Just need time to get my head around it. And she good. And not only is she get her head around it, but she held it up.

 

01:45:19:16 - 01:45:53:05

Heather Trammell

A big photo shoot we were having for our association. She was the kingpin for this photo shoot. At the photo shoot, she was hugging all the babies, handshaking, all the parents smiles, just aglow all over because she just needed time to get her head around it. So I I'm always remembering that. True for me, true for so many other parents, whether it takes you 5 minutes, can get your head around it or a few years to get your head around it.

 

01:45:53:07 - 01:46:02:00

Heather Trammell

If that time matters to you, then that time matters to you. And I want to hold that space for them. It helps.

 

01:46:02:02 - 01:46:41:09

Erin Croyle

I'm glad that you said that because I think we're all so different and we all need time to figure it out on our own. I wonder when you were saying this, it made me think of myself and how I had kind of the reverse thing. And I still do in some ways where if I'm with friends or family who have non-disabled children, I remember specifically one time when my son was was young toddler preschool age and I had to leave this like moms night because people were complaining about you know, their kid and playing hockey or this or that.

 

01:46:41:09 - 01:47:15:16

Erin Croyle

And it was just it just felt almost cruel to me because my experience was so vastly different. And so a lot of times I find myself gravitating to parents who have kids with disabilities because there's this unspoken understanding there where if my son does something strange or I have to leave suddenly or you know, all of the things that we have to endure, they just get it.

 

01:47:15:18 - 01:47:40:12

Heather Trammell

Yeah. Again, people who get it really do make a difference. And that that lady I told you about that I met when I was pregnant. She had an illustration that I have kept in my heart all these years too. She said, You know, Heather, there are muggles and there are wizards in the land of disability. The Wizards are the people who get it.

 

01:47:40:14 - 01:48:08:07

Heather Trammell

You know, we understand each other. We know there's platform nine in three quarters. We know how to get there. You know, we know each other. And then there are muggles. They don't get it. They just don't get it. Now there are kind hearted muggles and there are stupid muggles. There are kindhearted wizards and there are evil wizards. Believe me, there's plenty of people in the way of disability who I don't care to have storybooks with.

 

01:48:08:09 - 01:48:19:16

Heather Trammell

They're just not my people. But there are muggles and there are wizards. Some people get it, some people don't. And there's a real camaraderie when we have people who get it. I totally agree.

 

01:48:19:18 - 01:48:49:03

Erin Croyle

That is the most interesting analogy I've ever heard. And it just it also highlights the beauty of disability and the uniqueness and the way that it expands who you are as a person. You touched on this earlier, but I think a lot of us feel like if it weren't for my son, I don't think I would be as worldly and as tolerant and as patient as I am now.

 

01:48:49:03 - 01:48:57:21

Erin Croyle

I just there are things that I get and there's an empathy that I have that I'm not sure would have existed or matured in me. Right.

 

01:48:58:00 - 01:49:16:09

Heather Trammell

Our kids change us all the way. Well, parenting will change anybody. You know on any day of the week. But I think parenting changes us when disability is in the mix in a much different way. It's so much more of a primal way, I think.

 

01:49:16:11 - 01:49:34:21

Erin Croyle

Yeah, and it informs the way. So I have two younger kids is, you know, and it informs the way we parent them. And I've put less emphasis on certain things that I realize now aren't important, but I'm not sure if I would have if it weren't for my oldest.

 

01:49:34:23 - 01:49:52:17

Heather Trammell

My oldest held Down's syndrome, but my younger daughter is on the autism spectrum and understanding my older daughter's needs. And having rearranged my mind about, you know, developmental milestones.

 

01:49:52:19 - 01:49:53:14

Erin Croyle

And.

 

01:49:53:16 - 01:50:22:04

Heather Trammell

What what she should and shouldn't be doing it any age appropriate thing has helped me a lot. When my younger daughter was diagnosed on the autism spectrum because I was not did not experience that grief response with her that I did with her sister, because with her I was like, Well, okay, she has a disability is autism. I don't know much about autism, but I'm going to find out and I know exactly where to look.

 

01:50:22:10 - 01:50:50:05

Heather Trammell

I know who you ask. And so I think in one way, parenting our younger daughter has been enhanced or helped because we're like, okay, so this is you. This is you where you're at right now. I am here too. I'm here for you to move you to whatever your next level is of understanding or development or whatever you need.

 

01:50:50:07 - 01:51:09:21

Heather Trammell

Here I am. Whereas with, you know, when we first felt that our daughter had girls and girl and we were like, Well, there's absolutely nothing we can do about that kind of thing, we felt like the world had crashed and burned right there, but we didn't feel that way with our younger daughter. We were we were. What's the what's the word?

 

01:51:09:21 - 01:51:35:20

Heather Trammell

I want to use? Curious, inquisitive. We were like, Well, so tell me, what can I do for you? You know? And I think that my world has come crashing down, but more like so this is interesting. So let's do this. Let's do this thing. So I think it was definitely different the second time around.

 

01:51:35:22 - 01:51:47:17

Erin Croyle

Interesting. And this is I just have to ask out of my own journalistic curiosity, what differences do you see in the Down's syndrome community and the autism community as a parent?

 

01:51:47:19 - 01:52:23:13

Heather Trammell

MM Different. Yeah. Well, I am one of those really weird autistic mom people who embraces neurodiversity like I'm going to wave my neuron diversity flag, you know, like somebody to have the puzzle pieces. But I like neurodiversity. I think I see one of the differences is the language we use people first language reflective, reflected we in the girls and girl community, but they use identity first language in the autism community.

 

01:52:23:18 - 01:52:43:20

Heather Trammell

So I am more likely to you're more likely to hear me say in conversation, Yes, I have a daughter with Down's syndrome and I also have an autistic child as well. Well, I would never say I have a Down's syndrome child. Right. And I would not so I would not stand in my autism circles and say, oh, my child has autism.

 

01:52:43:20 - 01:53:20:07

Heather Trammell

I would say she's autistic. I what I see, sadly sometimes even in both communities, but for different reasons, is when parents divide parents can really divide in both communities, and it just breaks my heart to see it every time Are in the autism community. There can be a very sharp divide between children, autistic children who need an incredible amount of support and those who don't need as much support, i.e., high functioning, low functioning.

 

01:53:20:09 - 01:53:44:22

Heather Trammell

My gosh, we could go into this forever. But I see that divide a lot in the autism community and believing that autism can be cured by X, Y, and Z. I mean, this could really give my parents a lot how we treat what we do for autism, how we help people who are autistic in the gaps in your own community.

 

01:53:44:22 - 01:54:18:04

Heather Trammell

I think we definitely can divide yet again on the high functioning, role functioning people. That can be really difficult. I think in the towns in your own community, we know it's genetic, we know it's a genetic condition. We already know this medical science has spoken. It is a genetic condition. There's no gray area about that. But then sometimes we'll divide again on educational choices.

 

01:54:18:06 - 01:54:46:00

Heather Trammell

What disappoints me and hurts me so bad is to hear parents in either community beat each other up for their choices. Like if you went only X, Y, z, then your child would be doing better. You should ABC, you should do. You should do this, you should do that. You should do that because are not your child is not going as well.

 

01:54:46:02 - 01:55:17:17

Heather Trammell

Because you're not you are not as good a parent. This is the unspoken kind of thing that happens in both communities. And I find it so disheartening and so disappointing. Inclusion, school inclusion choices, health care. Whether you use this therapy, that therapy, this supplement or that supplement, I just it just disappoints me so much to hear parents beat each other up about that and divide about that crushing, absolutely crushing.

 

01:55:17:19 - 01:55:43:01

Erin Croyle

Well, Heather, you just provided the perfect tease for our part to pull. That's what we're going to talk in the next episode. Yeah, because I can't wait to talk about that. Yeah, I have one more question. I think just one more related to kind of the parenting thing and I am curious about how extended family and close friends affect your work.

 

01:55:43:01 - 01:56:01:18

Erin Croyle

What you see, because I know that in my own circles it can range from like supportive family who understands and makes an effort and then others that try to understand but really don't. And then you have, you know, family and friends who think that they get it, but they don't. And they talk to your kid as if they're a child.

 

01:56:01:18 - 01:56:24:18

Erin Croyle

And it's like, oh, yeah, of course you have people who are downright offensive and might use the R word or might say something terrible and then get mad when you call them out. Right. So, you know, do you deal with those dynamics and, you know, how do you how do you help families navigate that? Like, really difficult sort of.

 

01:56:24:20 - 01:57:01:07

Heather Trammell

Yeah. Yeah. I think in Down's Syndrome circles, I am not called upon to assist with new parents having problems with their new the new grandparents. Like their parents, sometimes they will have difficulty, like the grandparents will not believe the diagnosis. They just don't have Down syndrome. They all look like they have Down's syndrome. Therefore they don't have Down syndrome or grandparents.

 

01:57:01:09 - 01:57:25:18

Heather Trammell

Well, again, we're talking about a different generation. I mean, my parents in their eighties did not see adults with Down's syndrome walking around because they didn't have that life expectancy then. But now I'm going to go visit my dad next week in his eighties. And if he doesn't know it already, my daughter will outlive me. Well, what's that going to be about?

 

01:57:25:18 - 01:57:52:00

Heather Trammell

That never happened in this day and age. So sometimes grandparents perceptions can be very colored that way. And then other grandparents, like my own parents, they're like Johnny on the spot. You tell us what we need to know, what we need to think when we need to show up, and we are all about it. You just tell us, you know, I'll tell you a story that really, really mattered a lot to me when I was new parent.

 

01:57:52:00 - 01:58:12:16

Heather Trammell

My daughter with Down's syndrome was in neonatal intensive care for about a month, and they gave us, of course, no indication of exactly when she was going to go home. You know, we'll see that kind of thing. So my dad and his fiancee wanted to come out and visit us. And I said, Well, Dad, I don't know if the baby's going to be out of the hospital by then.

 

01:58:12:18 - 01:58:31:23

Heather Trammell

And your fiancee is not family yet. So I don't know if she's going to be actually allowed to come into the nick. You. I didn't even know her then. I didn't even know, like, if I wanted her to meet the baby. He said, well, we're just going to come anyway, okay? And I'm like, okay, your wife come on out, you know?

 

01:58:31:23 - 01:58:56:23

Heather Trammell

So they got a hotel room and they met us at the hospital one day. And my that his fiancee, now my mother said, Hey, why don't Scott and I go get a coffee in the cafeteria? You take your girl upstairs to go visit the baby. Great. You know, So I went upstairs and they're all a flutter upstairs. So, Heather, today's the day you're ready.

 

01:58:56:23 - 01:59:19:23

Heather Trammell

And I'm like, Ready for what they said to be going all day. And I'm like, No, seriously, it's going home. I didn't even have the car seat, you know, kind of thing. So we went back downstairs. We said, Hey, guess what is going home? Gay? Surprise, surprise. My now stepmother, then father's fiancee, said, Wow, that's so exciting. That's great.

 

01:59:19:23 - 01:59:41:22

Heather Trammell

Hey, here's what your dad and I can do. You can. I can go back to the hotel you guys give all situated and squared away here at the hospital. Go home, chill out, get some rest. Call us when you want to come over. Will bring dinner. I was like, Awesome. That's great. So I, I, we got all situated, got back home.

 

01:59:41:22 - 02:00:03:19

Heather Trammell

It all went exactly that way. Later on, I thought to myself, you know, if it had been my dad's second wife who had already who had passed away by this time, but if my dad's second wife had been a part of this scenario, it would not have gone down like that. She would have badgered the McHugh staff to come inside to the McHugh.

 

02:00:03:21 - 02:00:32:18

Heather Trammell

She would have hovered over us on way out the McHugh because there's just no way we could have done this by ourselves because we weren't capable. She didn't see us as adults. We couldn't possibly handle this without her expertise, you know, And she would have probably just barged ragged right there at home. And I thought to myself, you know, this is absolutely I couldn't give I couldn't have planned this better myself.

 

02:00:32:20 - 02:01:04:09

Heather Trammell

I love this way, Dad, Marry her now. You know, she's great today, but I always remember that about her, that she gave us space and she believed that we had it in us to be the perfect parents for the job. And if I ever hear difficult stories from new parents about their parents, about their the new grandparents, it's usually the kind of story that starts with they don't think we can do it.

 

02:01:04:11 - 02:01:27:14

Heather Trammell

They don't think we have it in us. They've seen us screw up this, that and the other thing, and they're sure we can't handle this. So I find that very disappointing. That doesn't happen very often. I'm glad to say that there are grandparents out there, like my parents who are all over it. They are glad to read and understand whatever you tell them to read and understand.

 

02:01:27:16 - 02:02:03:15

Heather Trammell

They are all they're loving on the new baby and loving on their adult children. And they are absolutely awesome. I think in autism parent circles I hear much more challenging situations with extended family, brothers and sisters who won't let their children around because because yours is just too wild or, you know, whatever too much grandparents who are most certain this child doesn't have autism at all.

 

02:02:03:19 - 02:02:34:23

Heather Trammell

They just need a good spanking. You don't disappoint them enough. They can't possibly be autistic friends. Some friends have stepped up beautifully. And yet I do hear heartbreaking stories about other friends who are so they're so afraid of saying the wrong thing that they say nothing. And then they go years of saying nothing, and then the relationship moves on, which is very, very sad.

 

02:02:35:00 - 02:02:39:16

Heather Trammell

Those are some of the things that I've heard. Difficult.

 

02:02:39:18 - 02:02:40:12

Erin Croyle

Yeah.

 

02:02:40:14 - 02:03:15:06

Heather Trammell

Not always. Some families are fabulous. You know, they all come to Buddy, walk with their team t shirts on and everything, and they've got it. They've got it in the bag. But then others not so much difficult generations can be make that difficult culture can make that difficult. Lack of understanding about the disability can make that difficult. I know some of my foreign born parents have not told their parents back in their home country that their child has Down syndrome because then their parents back in their home country would worry about them a lot.

 

02:03:15:08 - 02:03:25:17

Heather Trammell

They wouldn't get it. They wouldn't understand it all. Yeah, that would be very difficult. Has that been your experience of of your colleagues?

 

02:03:25:20 - 02:03:53:09

Erin Croyle

I mean, it's similar. Yeah, there's very different. I mean, it just runs all over and yeah, the cultural differences are significant where, I mean, you know, my son was born in Malaysia and when he was born and we saw doctors there like, well, no one here. If someone has a disability here, you don't see them, right? They just they're just kind of kept in their homes and I don't know about you, but after my son was born, I hadn't.

 

02:03:53:11 - 02:04:06:00

Erin Croyle

My son was the first person I met with Down syndrome. And so after he was born, then I saw every thing and I started noticing where people are at all.

 

02:04:06:00 - 02:04:06:13

Heather Trammell

Right.

 

02:04:06:15 - 02:04:22:00

Erin Croyle

Right. And well, and then the whole. But you're part of the club thing, like, it gets really embarrassing when my it's really embarrassing when my son isn't with me because I'll see like a parent with somebody or an adult and I'll just want to who has Down syndrome and I just want to go up and talk to them.

 

02:04:22:02 - 02:04:41:07

Heather Trammell

Right? Right. Yeah, I know, I know. Yeah, yeah. If you had your son with you, you have more of an end to have that conversation. I remember being in a cardiologist office with my younger daughter one day. Now my younger daughter is autistic, but you know, that doesn't have a look about it. So we were just there waiting for our appointment.

 

02:04:41:09 - 02:05:02:21

Heather Trammell

And there was a young mom there with her little boy who had a genetic condition, some kind of genetic condition. She was entertaining her little boy with toys and engaging him. And they were very cute together. And I was just sitting there with my daughter. You know, I was reading a magazine. She was reading a book. We were waiting for our appointment.

 

02:05:02:23 - 02:05:23:08

Heather Trammell

And I'm willing to, like, get the t shirt or the mug that said, I get it right. You know, I don't don't sit here and think I'm the person that doesn't get it just because this one looks typical. You know, I'm one of you. Me? See, I got the t shirt, you know, I just wanted to, like, pop out there.

 

02:05:23:10 - 02:05:44:20

Heather Trammell

But I also realized that, you know, not everybody funny enough, not everybody wants to meet me. You were right. You know, sometimes people are just going to the grocery store. Sometimes they're just playing with their kids. Sometimes they are just pumping gas. Just leave me alone. But they really don't want to talk about this one.

 

02:05:44:22 - 02:05:54:16

Erin Croyle

I know. I think I talked about this with somebody else. I just wish there was like a sign or something. We could give each other a support. Those moments because I know, right. Some sort of.

 

02:05:54:18 - 02:05:56:01

Heather Trammell

You know, signal.

 

02:05:56:03 - 02:06:10:17

Erin Croyle

Because I've had a moment where I've been in a store with my son and I've gotten the worst looks. Yeah. And I don't really want to talk to anybody with that about that. But I would love a comforting something from someone who gets it.

 

02:06:10:19 - 02:06:42:21

Heather Trammell

Yeah. That there could be the like, look of disdain or disgust, that kind of thing. Or that could be the pity book. I feel so sorry for you. Look. Or or a to that would be the. Oh, isn't she sweet? Look kind of thing. I'm like, Well, yes, I will tell you, she is actually very sweet, but she's also 21 and you can say hi.

 

02:06:42:23 - 02:06:58:00

Heather Trammell

She may say hi back. She may not, you know, I mean, she she's not just a cute stuffed animal, you know? I mean, she's not just a cute little thing. She's a person, right? Like a real person. And so those can be very difficult times. I agree. Yeah.

 

02:06:58:02 - 02:07:04:03

Erin Croyle

And I sometimes wonder, I don't know about you and this is really bleak, so I'm going to ask a happy question after this.

 

02:07:04:05 - 02:07:05:10

Heather Trammell

Okay.

 

02:07:05:12 - 02:07:31:14

Erin Croyle

People make choices when they find out their child has a disability and it's prenatal and that's their choice. I wonder, though, how they feel when they see our kids. I wonder how I would feel had I made that choice and I wonder sometimes if if there's an inquisitive look or a long stare, What what's beyond that? It must be really painful or strange just to have that happen.

 

02:07:31:20 - 02:08:04:10

Heather Trammell

When the world be a better place. If we were more curious about things than we were actually just mental about them. Or we have an eye, we have a fixed idea about them. So I can see if I'm hopping through the grocery store with my daughter and I get what appears to be the look of, Oh, well, you poor girl, you know, kind of thing or whatever, whatever kind of look I might get.

 

02:08:04:12 - 02:08:47:19

Heather Trammell

That's not positive. On the one hand, I be very disgruntled about that. Look, I say, stop staring at me, jerk. You know, or I could be curious. Mm hmm. I wonder why they feel that way. Like you. I'm curious to know if sometimes if I am in situations that if maybe the person passing by knew somebody with Down's syndrome once, maybe prenatally, I wonder, you know, so that kind of of curiosity might make the world a better place if we ask ourselves questions rather than have fixed ideas.

 

02:08:47:21 - 02:08:52:03

Heather Trammell

Yeah, absolutely. Yeah.

 

02:08:52:05 - 02:08:59:02

Erin Croyle

I want to know what the most rewarding part of your job is. Supporting families.

 

02:08:59:04 - 02:09:31:11

Heather Trammell

Oh, heavens, that would be difficult to say. I think I had mentioned it earlier. I think the most rewarding part of what I do is seeing families move from point A to point B, a changed life. I'm just all over that. Like the plague. I've met many new and expectant parents who were just devastated by hearing that their child had Down's syndrome.

 

02:09:31:13 - 02:09:55:06

Heather Trammell

And yet three, even 3 minutes to three weeks after their child's born, they're practically going into the room At New Parent Breakfast. I could cut the plates and they could keep the, you know, keep the lights on in the room by themselves because they're just so happy to welcome their new baby and see that their their new baby is just like them.

 

02:09:55:08 - 02:10:24:24

Heather Trammell

He's got his nose, her eyes. It's very much a part of their their families, not some three alien. It's just their little girl or their little boy. I love seeing that change. I love seeing light bulbs go on for my foreign born parents. When they realized that not only can their child go to school, their child must go to school, they they're required to go to school.

 

02:10:25:03 - 02:10:52:18

Heather Trammell

There's a law that protects them as they go to school or provide for them, or at least as good as that law can provide for them, and that a nice revelatory information for them. I knew a lady once from a foreign country or home in her country questioning medical, especially if you're a woman, is unheard of. It's just unheard of.

 

02:10:52:20 - 02:11:15:16

Heather Trammell

She called me, concerned that she could not get a genetics appointment for her child for several months. It takes forever to get into the genetics department anywhere at any hospital, and I wasn't surprised that they told her that they didn't have an opening until, what, was it, six months later or something like that. And I said, Well, that's not very surprising.

 

02:11:15:18 - 02:11:38:22

Heather Trammell

I have an idea for you, though. Take whatever appointment they give you, even if it's eight months from now, then in three weeks call them back. Say Hi, I'm Mrs. ABC. I have my son has an appointment in August. I'm wondering if there have been any cancellations or any openings since then? No. Oh, okay. Thank you very much.

 

02:11:38:22 - 02:11:57:16

Heather Trammell

And then you call three weeks later and then call three weeks like, Well, she took my advice and she actually got the baby in just genetics, like within a couple of months. It was great. She called back and I said, Oh, hi, this is ABC, how are you? Nice to talk to you again. Hey, how is your son doing?

 

02:11:57:18 - 02:12:19:15

Heather Trammell

Well, I just called to tell you that my son got his genetics appointment like his for next month. I think that's wonderful. Congratulations. That's great. Yay! Do you have any other questions? I can help with you. She said. Oh, no, I just wanted to say thank. Think. I just wanted to say thank you for for your advice. And I'm like, Oh, that's so nice.

 

02:12:19:21 - 02:12:37:00

Heather Trammell

Not everybody says thank you, you know, or at least that goes out of their way to say thank you that nicely. So I love seeing a changed life. There's one you're going to know me for a long time, Erin. When I make sure this is on my tombstone. She was a sucker for a change of life.

 

02:12:37:02 - 02:12:40:06

Erin Croyle

I love that you put sucker in there.

 

02:12:40:08 - 02:12:41:00

Heather Trammell

I want to make.

 

02:12:41:00 - 02:12:43:01

Erin Croyle

Sure I'll talk to your husband and make sure that.

 

02:12:43:01 - 02:12:47:19

Heather Trammell

You make sure. Okay? Make sure I'm counting on you.

 

02:12:47:21 - 02:13:10:07

Erin Croyle

Oh, my gosh. And I just want to add to when we're talking about the joyfulness and new parents that that I didn't my son was my first child. I didn't realize this, but babies with Down syndrome because of the low muscle tone, when you hold them, they just melt into you, just screaming because you know, non disabled baby.

 

02:13:10:07 - 02:13:13:19

Erin Croyle

You know that rigid ness of the way arms. It's not the same.

 

02:13:13:22 - 02:13:25:16

Heather Trammell

Yeah. Yep, yep, yep. Same. Same. No, my daughter was folding to me like a little ball. It was absolutely adorable. Is great. Yeah. She still can fold into a little ball, believe me.

 

02:13:25:18 - 02:13:30:02

Erin Croyle

Yeah. Yeah. Oh, well, I want to thank you. This has been.

 

02:13:30:02 - 02:13:41:01

Heather Trammell

Wonderful this year. Great talking to you about anything, Erin. Wonderful. Thank you for having me.

 

02:13:41:03 - 02:14:03:07

Erin Croyle

And thank you listeners for joining us. The second part of my interview with Heather Trammell will be out before the end of the year. She and I will be talking more about how toxic the high functioning, low functioning mindset can be. I'll have a podcast out soon about how difficult it can be for people with disabilities to find meaningful employment.

 

02:14:03:09 - 02:14:16:13

Erin Croyle

In the meantime, please rate review and share this podcast and tell me what topics you want to know more about. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.