It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost?

In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to Part 1 here!)

 

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. 

 

SHOW NOTES:

Heather Trammell is 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. 

Freebird - the award winning short film Heather mentioning in the episode. It is a MUST watch.

More about IDEA - the Individuals with Disabilities Education Act.

More about the ADA - the Americans with Disabilities Act.

 

 

TRANSCRIPT

01:00:07:18 - 01:00:36:21

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 Syndrome in 2010. Now I work with the Center for Family Involvement at VCU’s Partnership for People with Disabilities.

 

01:00:37:11 - 01:01:01:24

Erin Croyle

This podcast explores the triumphs and the 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 syndrome. And how the medical team broke that news to her is both shocking and heartbreaking.

 

01:01:02:14 - 01:01:30:20

Erin Croyle

After the dust settled, Heather became the director of Family Support at the Down 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 drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals.

 

01:01:31:05 - 01:02:01:21

Erin Croyle

These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes.

 

01:02:02:08 - 01:02:15:19

Erin Croyle

Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that?

 

01:02:16:00 - 01:02:43:20

Heather Trammell

Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does.

 

01:02:44:04 - 01:03:20:19

Heather Trammell

I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether that was the experience of every person with Down syndrome. We automatically assume that it could or should be. Every experience a person with Down syndrome, they all should get to be homecoming kings.

 

01:03:21:03 - 01:03:47:19

Heather Trammell

They all should do this or do that, graduate from high school, etc. They all should do this. I don't think we question it as much. But then I think now we question those more. I think we we ask ourselves, is inspiration pouring okay, now and back then we can ask ourselves whether it was okay, we just did it.

 

01:03:48:05 - 01:04:16:14

Heather Trammell

Now, mind you, my child was born. There was the early 2000s. We were coming out of the 1990s 1980s where positive thinking, let alone positive representation of people with Down syndrome and disabilities wasn't out there hardly at all. Remember, idea was a long till 1970, I think five, right? At the ADA, it was never. Was it always on the books?

 

01:04:16:19 - 01:04:41:18

Heather Trammell

I mean, positive thinking about people with guns and girls wasn't a norm. And so I think people were glad to put that kind of stuff out there. But I think we can't get over or rely on it. And we we forgot that human nature doesn't naturally get curious about stuff. Human nature would normally bend towards us not being curious.

 

01:04:42:00 - 01:05:07:07

Heather Trammell

We wouldn't ask ourselves because every person with Down syndrome experienced this. Maybe, maybe not. What did those parents do that made their child so amazing? I don't think we were as curious back then. I don't think human nature is yet still as curious as we could be. Maybe it served a purpose for our time. I don't know that it serves every purpose.

 

01:05:09:09 - 01:05:36:00

Erin Croyle

Yeah. I mean, I feel one could argue that it's dangerous, that it implies that someone who isn't as advanced, if you will, isn't as worthy you alluded to in the first episode. And these terms are outdated now and we shouldn't use them. But in this context, we're going to use them high functioning and low functioning. Can you go into that a little bit more?

 

01:05:36:12 - 01:06:01:21

Heather Trammell

I wish they were more outdated than they are those terms, but yet I hear them quite often. I hear it in both the communities that I set my fucking through, both autism and in Down Syndrome. I think one of the things that makes those really harmful is I think when we categorize people with that like that, first of all, we detract from their humanity.

 

01:06:02:07 - 01:06:26:00

Heather Trammell

That you can have a good day and a bad day. I have good days and bad days. I do taekwondo and CrossFit, and I'll tell you, some days I'm on the white board. I'm doing great. Some days I land the head shut and some days I don't. You know, am I a high functioning person or a low functioning person?

 

01:06:26:17 - 01:06:50:10

Heather Trammell

Well, some days I'm great. Some days are not. So I think it does a disservice that way because we're not letting people be human. We're not letting people have good days and bad days. We're categorizing them by how much we get from them if they meet our needs, if they line up on our dotted line and make it easier for us.

 

01:06:50:16 - 01:07:18:07

Heather Trammell

They must be high functioning. Mhm. And, and if they're not then they're low. So my daughter with Down syndrome can do X and Y and Z. And her friend with Down syndrome cannot. We don't ask ourselves who's more worthy of a human being. We're asking ourselves, who is making my life easier? How does it affect me? It can be kind of self-centered.

 

01:07:18:19 - 01:07:46:11

Heather Trammell

It also doesn't actually tell us everything we really need to know. Really. So if I drop my child off at camp and they're asking me, is she high functioning or low functioning? Answering that question will not give them the information that they need. What they really need to know is she does need help in the bathroom. But if you guys go on a two mile hike, she'll be fine.

 

01:07:47:10 - 01:08:06:10

Heather Trammell

She does not speak very well or very clearly, but believe me, she has everything you say. She'll she'll let you know when things are not going right. So it doesn't really tell us what we need to know. It also doesn't. I mean, you tell me if you agree or not, does it? It kind of put people in a box.

 

01:08:06:11 - 01:08:34:13

Heather Trammell

Oh, yeah. Like they never change. Yeah. Like this is this. You are high functioning. Therefore you will always be high functioning. You will be high functioning. Every situation. You'll be as high functioning at ten as you are at 21. It's not giving people room for growth. Right. I know that my daughter with Down syndrome is much more communicative in certain situations than she is in other situations.

 

01:08:35:04 - 01:08:59:07

Heather Trammell

Does that mean she's high functioning or low function? What area are we talking about? High functioning, low voice. And you can just tell me what area we're talking about. My daughter with Down Syndrome can read, but she does not do math. High functioning or low functioning is kind of a broad term that doesn't really tell us what we need to know.

 

01:09:00:10 - 01:09:33:18

Heather Trammell

And it divides parents in every possible crushing way. I just could not go into how disappointing it is to me to hear parents talk to each other about high functioning and low functioning, or to have to insinuate that Parent A has better because their child is quote unquote high functioning and then Parent B has a much harder time because their child is low functioning.

 

01:09:34:19 - 01:09:58:02

Heather Trammell

We're not saying that quote unquote, high functioning kids don't have needs. If we go ahead and categorize somebody as high functioning, we could go down the path of thinking they need no help at all. Well, sometimes they actually do. Or I think, conversely, that if we categorize someone as low functioning, they have nothing to say, but they don't have nothing to say.

 

01:09:58:02 - 01:10:27:20

Heather Trammell

They have everything you say, they have lots to contribute. But we're not going to hear that because we put them in the school box. That's called both function as very, very arduous. I just hearing parents insinuate or actually say, if you would only X, Y, z, then your child would be doing better as if we were parenting little vending machines.

 

01:10:28:14 - 01:11:03:01

Heather Trammell

Quarter in, candy out right. If I, X, y, z, then ABC will happen. But there's no guarantee of that at all. I know a parent in my local area whose has all the money all the time, all the resources, all the therapy, a huge house time, enough to invest in anything. And yet her child struggles a lot, has needs a lot of support.

 

01:11:04:18 - 01:11:36:09

Heather Trammell

We are not parenting vending machines and we're also not trying to be you know, my child is a project parent either. So I think sometimes when we divide between high functioning, low functioning, the next question is, well, what did you do? What did you do to make their skills so great? What did you do that they were so high functioning and that we insinuate that, of course, it's all on us is we're the ones that that made that happen.

 

01:11:37:12 - 01:11:57:21

Heather Trammell

But even the parents I know whose children are doing very well, they don't always appreciate being quizzed like that. They don't appreciate that question at all. You might think they'd be flattered by it because their children are doing so well, but they're actually not flattered by the question at all. They're like, I just let them be themselves. I'm just working with raw material here.

 

01:11:58:09 - 01:12:36:00

Heather Trammell

They didn't do something. It was like the magic therapy, the magic supplement, the perfect educational situation, and that's how they did it. Boom, poof. There I got like, I hope I'm shrinking now. Not necessarily. Some parents are doing everything they possibly can and their children skills struggle. And I think when we divide in high functioning emotion categories, we are putting a lot of pressure on our kids to not be themselves, not letting our children be themselves.

 

01:12:36:08 - 01:12:47:21

Heather Trammell

And we're putting pressure on ourselves to be the deciding factor of how well our children are doing as that depending solely on us. And I'm not I don't believe it does.

 

01:12:49:22 - 01:13:09:04

Erin Croyle

I think more parents need to hear that. I shout it from the rooftops because it really is something that exists. And I have had parents of older children with Down syndrome make very sweet suggestions, mind you, but.

 

01:13:09:10 - 01:13:10:23

Heather Trammell

Comes from a good place. I'm sure.

 

01:13:11:05 - 01:13:41:21

Erin Croyle

It does. Yeah, it was. You know, here here's like this accomplished adult and I hear from the parent, Oh, well, I read this with him and I did this with them and I did this. And here I am. I've invested all this time and money in the learning program. I can't even get my son to engage. I can't I take the materials out and he won't sit with the same, same and but when you attend the courses, they're like, Oh, well, then you're doing it wrong.

 

01:13:42:00 - 01:13:43:03

Heather Trammell

Yeah, maybe it.

 

01:13:43:03 - 01:13:58:02

Erin Croyle

It is so frustrating because especially as mothers, I think we put it on ourselves as if it's our failure and then it does our child a disservice because we're we're like trying to push them to do something that they just aren't there for.

 

01:13:58:07 - 01:14:29:24

Heather Trammell

And begging ourselves up on the way. As parents, you know, think about our friends whose children have Down syndrome and autism together. That cajoling nurses, this very challenging situation. They are doing everything they possibly can to help their children. They love their children. They would want their children to be as successful as they possibly can, but their children might have challenges that other kids don't who don't have a diagnosis like that.

 

01:14:31:08 - 01:14:58:08

Heather Trammell

Let's not beat the parents up. Let's not encourage other parents picking them up and let's not encourage them to beat themselves up either. They are doing the best they can. Sometimes in my parents support experience, I will be perfectly honest with you. And there are some parents I find very frustrating to talk to. Go figure. Sometimes I do everything I can to make the best suggestions possible and I don't see them pick up on it.

 

01:14:58:19 - 01:15:23:13

Heather Trammell

They don't move forward with any of the suggestions that I took a lot of time to pull together for them. And I do find that very, very frustrating. But they really still are doing the very best that they can. I think of some families where they don't have a lot of margin. You've heard you've heard the phrase about margins.

 

01:15:23:13 - 01:15:47:22

Heather Trammell

Maybe you've read the book. I have a certain amount of margin in my life. We are a stable family with stable finances. I am not in danger of the lights being cut off. I'm not in danger of food not being on the table. I have margins that way. There are some families that don't have those margins. They have their finances are extreme and we take they are food scarce at the end of the month.

 

01:15:48:04 - 01:16:07:11

Heather Trammell

Maybe their children experience more difficulties than my children do. Their margins are a little bit smaller. And so even when I have frustrating conversations with parents or frustrating situations and I'm like, I don't know what else I can do to help this parent, I have to realize that they are doing the best that they can with the margins that they have.

 

01:16:08:01 - 01:16:22:11

Heather Trammell

And sometimes when children struggle more, when they have more high support needs, our margins might be a little bit smaller. And I think we need to recognize that and still celebrate that person and support that parent.

 

01:16:23:24 - 01:16:26:22

Erin Croyle

Yeah, and support that parent maybe even more so.

 

01:16:26:22 - 01:16:27:12

Heather Trammell

Yeah, even.

 

01:16:27:12 - 01:16:33:00

Erin Croyle

More. And it's that analogy is interesting because I think about how our margins shift over time. You know.

 

01:16:33:03 - 01:16:33:17

Heather Trammell

They do.

 

01:16:33:17 - 01:16:35:15

Erin Croyle

You have aging parents, and you have to help them.

 

01:16:35:16 - 01:16:36:18

Heather Trammell

True.

 

01:16:36:20 - 01:16:39:18

Erin Croyle

Right. Or loses a job or.

 

01:16:39:24 - 01:17:01:17

Heather Trammell

Yeah my margins were a lot smaller last school year than they are going to be this school year. My children had educational needs last year. That just took a lot of time for me, lost a lot of sleep over it. What about peace? Enjoyed stress free living. So last year was not my best year and I had to drop out of my gym classes.

 

01:17:01:22 - 01:17:32:09

Heather Trammell

I love my gym classes very much, but because my family needed me, I had to cut loose some stuff. So my margins were a little bit smaller last year. I'm looking forward to them being a little bit bigger this year. That'll be great. But when my family needs change, I change with them. If I did have a health care condition last year or any time, if the main breadwinning parent dies or something, your margins change and they would naturally change.

 

01:17:32:09 - 01:17:56:05

Heather Trammell

If your child's struggles were different one year than they were to another year too. So again, that's what, you know, the whole high functioning, low functioning discussion is so boxy that it doesn't allow for any changes. We've just categorized them. Poof, you are high functioning, you know, And then they they never can change. They can never, never get out of the box.

 

01:17:56:22 - 01:17:57:20

Heather Trammell

I find that difficult.

 

01:17:58:11 - 01:18:15:12

Erin Croyle

Yeah. And I think it's rooted in able ism. I think about right through. Yeah. When my son was young and I was seeing the geneticist and specialist and driving him in there. Yeah, I remember before knowing how terrible the term is, asking what you think he'll be high functioning and like.

 

01:18:15:12 - 01:18:15:22

Heather Trammell

Really.

 

01:18:16:07 - 01:18:23:06

Erin Croyle

Clinging on to that. And then in the Down syndrome community, we have these amazing figures like David Egan in.

 

01:18:23:06 - 01:18:23:19

Heather Trammell

Yeah, true.

 

01:18:23:22 - 01:18:27:05

Erin Croyle

Frank Stevens and all these other amazing people.

 

01:18:27:14 - 01:18:28:00

Heather Trammell

They are.

 

01:18:28:01 - 01:18:40:03

Erin Croyle

And that is a true inspiration. You know, I had my son and I got to meet these people and, you know, David's of friends and yeah, but in my mind I was like, Well, that could be my son.

 

01:18:40:17 - 01:18:41:01

Heather Trammell

Right?

 

01:18:41:06 - 01:19:06:15

Erin Croyle

But those are my dreams. And it's become clear that one, those are my dreams, right, too. Not every kid can get a standard diploma if they have Down syndrome. And fighting for that, it puts pressure on you as a parent, but also pressure on your child that maybe we need to rethink our dreams as a parent and look at who are kid is, right.

 

01:19:07:10 - 01:19:37:05

Heather Trammell

Oh, you think? Yeah, maybe we do, you know, And I think that I think that's part of a real challenge when you're when your child is very young enough, is to be chasing those things down, chasing down your dreams rather than their dreams. And to have have a vision in your mind about what you want. And you will not settle for anything less than that.

 

01:19:37:23 - 01:19:56:06

Heather Trammell

Nothing will change that. I'm not saying that some of us don't have deeply held values and convictions, that we like it that way, and we are going to keep it. You know, people who have faith convictions, they are not going to think they love God the way they love God and they plan on changing that. And and I'm one of them.

 

01:19:56:23 - 01:20:29:08

Heather Trammell

But I think people change. And so I want to appreciate the fact that my daughter daughter's plural, will change throughout their lives. And they're not a little box. And I could have had a dream that my older daughter would get a scan their diploma, but she did not get a scan or diploma. Well, what happens to me then, if your child doesn't reach X, Y, Z level of high functioning, what will happen to you?

 

01:20:30:04 - 01:20:58:08

Heather Trammell

Will you fall apart? Will you blow up into a thousand pieces? What will happen to you? I appreciate parents going for the gusto, especially when their children are young. You don't know what your child is going to accomplish. Go for it. Live it up and go for it. And if it changes, change with it. Ask yourself what's going to happen if you don't get X, Y, z?

 

01:20:58:21 - 01:21:10:12

Erin Croyle

What kind of person will you be? It's a good question to ask as we pursue the high functioning path. If that's the path that matters, keep my dog. I love my dog.

 

01:21:11:04 - 01:21:31:22

Erin Croyle

I love my dog. I love that you just said that. You've put it in such a perfect way to go for it when they're kids. But I also want to touch on the predatory businesses I think about. I don't know if this speech pathologist is still marketing certain tools, but I think.

 

01:21:31:22 - 01:21:32:11

Heather Trammell

About.

 

01:21:33:12 - 01:21:43:11

Erin Croyle

This program where there were tools to use, and this would help with the low muscle tone, and your child will speak clearly and come to our seminar and buy the tools. It's $900 a person.

 

01:21:43:17 - 01:21:47:21

Heather Trammell

Exactly. And then the tools are $500, right?

 

01:21:47:21 - 01:21:56:13

Erin Croyle

Yes. And then you go and you spend this money and then your kid's still not doing it and you blame yourself. And there you are as a family, stressing out.

 

01:21:56:16 - 01:21:57:06

Heather Trammell

Right.

 

01:21:57:12 - 01:21:59:02

Heather Trammell

And you have money left for vacation.

 

01:21:59:02 - 01:22:29:22

Heather Trammell

Right, right, right. I share your concern here. And predatory is not and is not a bad word. Use that. That's pretty well said. Predatory. If it is so good, if it's just the bomb dot com therapy and really every child should do this, then what about my parents who have financial needs? What about low income families? Families who don't speak English as a first language?

 

01:22:30:12 - 01:23:00:12

Heather Trammell

Can this program be implemented? If I have two children or 12, can I implement this program as a single parent? Can I implement this program with a not so cooperating co-parent? Will this program be effective if school doesn't do it? If I'm the only one doing it predatory? If you don't buy my product, do my thing. Your child is not going to do well.

 

01:23:01:18 - 01:23:27:09

Heather Trammell

Oh, I can't tell you how disappointing I hear that that is just really, really crushing. And you make such a good point. It's like, well, now you have no money left over for vacation. Now you are sick. It’s mortgaging your house on the thought that your child might respond well to this thing, whatever it is maybe your child does.

 

01:23:27:19 - 01:23:38:24

Heather Trammell

But then again, maybe they go right. What happens if they don't? Now you second mortgaged your house. You have quit the job you love. Well, blood work that matters to you so much.

 

01:23:39:18 - 01:23:57:15

Erin Croyle

Yeah, it's really harmful. And you see it a lot. And I think it's a societal thing where we see disability and we either want to overcome it. Yeah, we want to fix it, but we have yet to just accept it and let people be who they are.

 

01:23:58:02 - 01:24:08:11

Heather Trammell

Correct. Correct. I'm sure you saw this YouTube video years ago. The name of it is called Freberg. Ring a Bell for You?

 

01:24:08:11 - 01:24:09:13

Heather Trammell

Sounds familiar.

 

01:24:09:13 - 01:24:35:07

Heather Trammell

Okay. If you if you see it, it's an animated saying follows the life of a baby with Down syndrome all the way until they're an adult. At the very end of the video, they have these little snippets of people with Down syndrome. Again, it's animated, but they are real people. They have a caring Gaffney in there and they have the phrase says free to be got got it.

 

01:24:36:03 - 01:25:06:20

Heather Trammell

And then underneath they'll say, Mary, for 25 years, free to be a guy, which is caring. Gaffney has a free to be and the guy and there's there's a couple of different scenarios The very last person that they showcase in that little video is it says Free to be. And then parentheses never learn to speak lived in his his small community all his life.

 

01:25:08:05 - 01:25:37:05

Heather Trammell

So basically he can grow up to be like, amazing. Like whatever we think the high functioning amazing is. And then the video takes that phrase where it says free could be dot, dot, dot, and it takes out the dots until there's one period. Free to be, just free to be. Hmm. Wouldn't that solve the high functioning, malfunctioning question if we were all just free to be, period?

 

01:25:37:14 - 01:26:05:17

Heather Trammell

Not free to be and then fill in the blank? Yeah, You. I mean, Americans are like this. We think anything can happen, right? Western thinking is just like this. But I think just to be just be without being amazing, without being what the world thinks is amazing. What America thinks is amazing, what Indonesia thinks is amazing. Just be I love that video.

 

01:26:05:17 - 01:26:10:03

Heather Trammell

I highly recommend it to Everybody is called Free Bird.

 

01:26:10:05 - 01:26:37:05

Erin Croyle

I'll make sure I put the link in the description. And I love that idea too, because I think about different people, whether disabled or not. And high functioning, low functioning. Let's think about just who you are as a person. We're all good at some things and not so good at others. And for and so some people are exceptional and there we see them in politics or on a national global scale.

 

01:26:37:17 - 01:26:47:08

Erin Croyle

And then some people are just really, really good at being a good community member or really good at playing pickleball or, you know, whatever.

 

01:26:48:09 - 01:27:16:02

Heather Trammell

What if Beth Trammell, if nobody ever knows Beth Trammell beyond Central Springfield, Virginia. Mm hmm. That's it. Let's say she always lives in central Springfield. She never writes a book. She does not go to university. She doesn't get married. She's not on anybody's blog or podcast. What if what if she just lives a quiet life in her community?

 

01:27:17:07 - 01:27:37:11

Heather Trammell

Is that a bad thing? Well, if I ask you American, that I mean, we all want to be like so accomplished. Accomplishments are very big in America. That's why we want our kids to go to top colleges and stuff like that. That's why we push them so hard in high school so that they'll have great college entrance recipes and stuff like that.

 

01:27:38:13 - 01:27:43:24

Heather Trammell

We do it to our typical kids as much as we do to our kids with disability. The outcome is not better.

 

01:27:45:09 - 01:28:05:14

Erin Croyle

No, and I think about programs like Think College, where you can send a child with an intellectual developmental disability to school, to live on campus, to do the things. Yep, it's incredibly expensive. And when they get out, there's no guarantee for a job or rec.

 

01:28:06:12 - 01:28:39:17

Heather Trammell

Correct? That is true. If even if we spend all the money on the therapy and the therapy tools and we a we die on the hill of inclusion all the way through their high school graduation, they're still going to have Down syndrome. They're not going to stop having Down syndrome. And society will not evolve that fast, that our individuals with Down syndrome really will be afforded all the same opportunities as somebody without.

 

01:28:40:05 - 01:29:10:11

Heather Trammell

Now, mind you, our society is light years ahead of some non-Western countries. Let me tell you. That's just that's my personal professional experience. Our society does not move quick. We still have a long way to go. Sometimes some of the foreign-born parents that I know who immigrate here, who actually immigrate here purposefully legally to give their children a better life here, are coming from countries where there's like zero.

 

01:29:10:16 - 01:29:37:11

Heather Trammell

There's just nothing, you know, and so something is better than nothing. Sometimes disappointing for them when things aren't magically better or they're magically easier. There's nothing easy about special education. It's a very arduous system. They're disappointed when things don't just magically get better. I think the same thing for all the therapy and stuff that we invest in, we we get disappointed when things aren't magically better.

 

01:29:37:22 - 01:29:51:03

Erin Croyle

They might get better. And I'm glad when they do believe me, but sometimes they might not. What then? Can we just be? Period? Can my daughter just be? I hope so.

 

01:29:52:21 - 01:30:23:07

Erin Croyle

You know, there's still these just embedded ablest ideas in our society. And I think some of that starts even in earlier intervention. I think don't get me wrong, early intervention is one of the best things ever and it should exist and continue and we should support it and do more of it. But I just know in my personal experience how you start early intervention and then you're thinking I need more and you add more therapies on.

 

01:30:23:07 - 01:30:44:07

Erin Croyle

And I found myself just so stressed out. We would do early intervention and then we would tack on some speech therapy to help in the future. And I would be lugging my son and then his little brother would never get a proper nap because I thought I was doing what I had to do for him.

 

01:30:44:10 - 01:30:57:18

Heather Trammell

Through hyperventilation and parenting. All that hyperventilation, Parenting or My child is my project parenting. Yeah, the very, very difficult. Difficult on the family.

 

01:30:57:18 - 01:31:01:20

Erin Croyle

It is. But the medical models really push that still.

 

01:31:02:01 - 01:31:02:12

Heather Trammell

Right?

 

01:31:02:18 - 01:31:18:18

Erin Croyle

And you see a geneticist or whomever and they refer you to a behaviorist and you know, the behaviorist will give you these things to do that are. Yeah, possible unless you're like superwoman.

 

01:31:19:08 - 01:32:02:13

Heather Trammell

Right. Or there's somehow the average day extending 8 hours. Right. Or you didn't have to parent your one, two, three other children or whatever. I hear that often from newly diagnosed parents in my autism circles where the professionals will will recommend ABA therapy every single time. That's the way to go. And then when they contact ABA therapists, if they find anybody that has an opening, and if those people accept their insurance, which is not always true, they're recommending 20 to 30 hours a week of therapy on top of preschool or, you know, enhanced autism classes that they're already going to.

 

01:32:03:05 - 01:32:23:14

Heather Trammell

But when does this little guy get a breach already? I feel really badly about that. And that's, again, I think, to what you said before, looking at disability as a medical model, it has to be fixed. Therefore, we're going to fix it. Some people have benefited from ABA therapy, some people have, but some people have been greatly harmed by it too.

 

01:32:24:15 - 01:32:43:01

Erin Croyle

Yeah, and therapies in general. I just I guess I want to say this because I wish I could go back and give myself a hug in those early years and I still beat myself up now. But, you know, you're supposed to bring Pax cards with you all everywhere you go to help your kiddo speak or.

 

01:32:43:04 - 01:32:43:11

Heather Trammell

To the.

 

01:32:43:11 - 01:32:54:21

Erin Croyle

Beach. Well, I mean, that's the thing. They instead of teaching American Sign language and having that be the standard by having teachers learn it. Yes. Parents want to do all of these things.

 

01:32:55:02 - 01:32:56:00

Heather Trammell

Yes.

 

01:32:56:00 - 01:33:08:09

Erin Croyle

Yeah, I work and then I plans which. Okay, great pro quo is great, but guess what? ASL is better. I don't have to worry about my kid jumping on YouTube. I don't have to charge batteries. It's everywhere.

 

01:33:08:09 - 01:33:27:01

Heather Trammell

It's not going to break. Your kid won't throw it or throw it out the window while you're driving or whatever, right? I mean, yeah, I I've always felt that way about sign language as well, is that I wish more people would use it with my daughter with Down syndrome or at least fake it.

 

01:33:27:04 - 01:33:27:13

Heather Trammell

Right.

 

01:33:27:21 - 01:33:49:14

Heather Trammell

You know, I mean, with all due respect to the deaf and hard of hearing community, I would rather at least see my somebody try by using gestures or something with my daughter takes first of all, it keeps her attention better. And she will certainly be following your directions much better than if you give her a paragraph long essay about what you want her to do, you know.

 

01:33:49:14 - 01:33:59:24

Heather Trammell

And she didn't take it to the beach. She can take it on a plane. It doesn't need to be charged, it won't wear out, etc.. Right. I totally agree. Love it.

 

01:34:01:17 - 01:34:15:06

Erin Croyle

It's really difficult. And I think that it's really damaging for parents to keep having these models of just the best that we see everywhere.

 

01:34:15:06 - 01:34:15:19

Heather Trammell

Yeah.

 

01:34:16:05 - 01:34:27:09

Erin Croyle

Not being able to love your child for who they are. I mean, I know that people love their child, but worse. Why are we trying to fix them? Why aren't we trying to fix society?

 

01:34:28:11 - 01:34:55:16

Heather Trammell

Yep, yep. My younger daughter actually told me that once she was in fifth grade, I think fifth grade. And I said, Well, do you want to go to the IEP meeting with me? No, I want to go. Okay, that's fine. Well, what would you like me to tell them? I'm here to speak for you. And she said, Tell them I'm not broken and I don't need to be fixed like that From a fifth grade autistic.

 

01:34:56:00 - 01:35:19:08

Heather Trammell

I'm like, Bravo, girl. You are my people. I love you. I do feel really heartbroken for my parents who beat themselves up thinking they need to do everything to enhance their child's high functioning. This, so to speak. Have you ever gone to the national conferences, National Down Syndrome, Congress convention?

 

01:35:19:13 - 01:35:22:11

Heather Trammell

I did years ago when it was in D.C..

 

01:35:22:17 - 01:35:58:21

Heather Trammell

Okay. I went when Beth was very little, just a newborn. And I remember meeting other parents and actually being that parent who would walk around the national conference thinking, I need to do this. I think we're not doing this. Oh, my gosh, we're not doing this. You know, And I remember feeling that real anxiety. And I, I caught myself because, first of all, know, my husband and I had already discussed that, you know, we were we're not going to do every single therapy known to the free world.

 

01:35:58:21 - 01:36:12:07

Heather Trammell

We already had that normalize. But I could see the anxiety that it raised in other parents. And it really hurts my heart to see other parents with that kind of anxiety is hyperventilation parenting, so to speak?

 

01:36:12:15 - 01:36:35:13

Erin Croyle

It is. I don't think it's something that the parents can help. I think it's something that we need to change. And I wonder, Heather, with your experience all this time, I'm 13 years into it. You're 20 some years into it. What could we do that's different? We showcase these amazing individuals, but is it a matter of showcasing everybody?

 

01:36:35:13 - 01:36:41:09

Erin Croyle

How can we change? There's perception that everybody has value.

 

01:36:42:00 - 01:37:21:11

Heather Trammell

I'd like to see everybody get involved. So not just the parents. I want to see teachers treat their students like that, like case managers. You service people, employers, everybody would have to get involved. You can't have one segment of society like stepping up their game and the rest of us not. I'd like to see everybody get involved. I think it would take a fundamental change in the hearts and minds of Western American thinking that we just really a disability or no disability.

 

01:37:21:11 - 01:37:47:19

Heather Trammell

We value people with skills. We're all about it. Remember that community college is not second rate college. If your child doesn't go to university, the same for trade school. You know your child has settled just because they went to trade school. This is a fundamental change in American thinking and every segment of American society, we have to be involved in that.

 

01:37:48:08 - 01:37:51:21

Heather Trammell

We have to be we have to rally the troops, so to speak.

 

01:37:52:02 - 01:37:54:15

Heather Trammell

Yeah, just a minute of mind shift.

 

01:37:55:05 - 01:38:19:14

Heather Trammell

A mind shift of everybody. Everybody we have in bulk. So really, we we parents have been on this train for years. I mean, that's why we started the idea, because we were like, well, children, we have a right to go to school. So, yeah, I mean, we've wanted our children to have the best all along, wanted people to accept them all along.

 

01:38:19:20 - 01:38:41:18

Heather Trammell

And we keep having to drag different segments of society along with us. The medical establishment, the educational establishment, the service people. We keep on having to drag people along. It's been very hard. If everybody would get on the train, I think we could make that actually, that would help.

 

01:38:42:21 - 01:39:12:18

Erin Croyle

You mentioned IDEA, which some people say I-D-E-A. So for anyone listening, it's the individuals with disabilities education, which was passed in 1975. But here now, it's still not fully funded. The Americans with Disabilities Act was passed in 1990. We're still not really fully compliant. That mindset shifts. I think part of that happens with representation. So how do we change our representation to represent the full scope of what disability is?

 

01:39:14:22 - 01:39:38:02

Heather Trammell

One of the things that I am going to do this year is that I had invited a grand marshal and a CO grand marshal for our buddy walk. I'm not involved in the Buddy Walk planning except for grand marshal. That's my that's my job for our buddy walk this year, buddy. Walk our big outdoor fund raising awareness festival for our organizations.

 

01:39:38:04 - 01:40:07:17

Heather Trammell

It's really a great, fun time. And I invited a grand marshal who is well known in our area, whose skill development is stratospheric, fabulous individual. Everybody wants their child to be like her. And then I invited a co- grand marshal who has a co diagnosis of autism and Down syndrome, and her remarks will probably be read or will be used for an and augmentative communication device.

 

01:40:08:02 - 01:40:38:13

Heather Trammell

Whatever remarks she shares with our organization on that gate, I've invited her to be on the platform that day because we're not just the high functioning group. We're not just the group that champions the stars. We champion all people with Down syndrome. That's one thing that I am doing. I think we could be giving more airspace to people who just be.

 

01:40:39:10 - 01:41:31:11

Heather Trammell

What if Beth Trimble had a blog and you can see her going to the post-secondary amazing university program in my area? But you saw her going to her favorite youth group activity on Wednesday night or go to church with us on Sunday morning or go to school every day where she receives quite a bit of assistance and school just be well, if there is a blog out there just for that, what if we encouraged and and highlighted those things to our newer families so that they would see the entire spectrum of life with Down syndrome, not just the very highly skilled, capable individuals.

 

01:41:32:18 - 01:41:33:09

Heather Trammell

I love that.

 

01:41:33:09 - 01:41:37:18

Heather Trammell

Heather It would be a great, great way to go. Media goes a lot of things.

 

01:41:38:03 - 01:41:49:03

Erin Croyle

Right? It does. At the grassroots efforts really help the social media. Social media helps because, you know, the networks don't cover this stuff necessarily.

 

01:41:49:16 - 01:42:12:15

Heather Trammell

Yes, correct. Networks like the Homecoming king, I guess, you know, they love that kind of stuff. And I'm not saying that that person deserved to be homecoming king or whoever they were, whatever school it was. And I'm sure they enjoyed that moment. But so did the the kid in the band who's playing the cowbell, did we not We didn't give him any airtime.

 

01:42:13:07 - 01:42:34:10

Heather Trammell

Right. Or my daughter, who will never be in anybody's band anywhere if she's in the stands and her favorite, you play all the music and she will be dancing back and forth for the entire night, I assure you. Right? That's how she rolls with music. She's not going to get a video spot on the NBC that night.

 

01:42:36:10 - 01:42:41:14

Heather Trammell

Why don't we ask ourselves why that is? Do we ever ask ourselves why is that? No right?

 

01:42:41:23 - 01:42:43:22

Heather Trammell

I have a theory of why that is.

 

01:42:44:12 - 01:42:45:03

Heather Trammell

What's your theory?

 

01:42:45:03 - 01:43:00:17

Erin Croyle

Tell me when we post the homecoming king or we post the kid that makes the basket at the end of the game. We're celebrating the kid with a disability. Sure, But it's more celebrating ourselves because we helped him do that. And so we feel good about ourselves as a non-disabled.

 

01:43:00:24 - 01:43:23:18

Heather Trammell

Right? It's all about us. Isn't that sad? Isn't that sad? It's one of the things that I emphasize to the volunteers I work with in our parents support program, wonderful volunteers. They really want to, you know, be there to be a mentor, support to new parents and stuff. And have to go through a long training to do that with our organization.

 

01:43:24:02 - 01:43:44:22

Heather Trammell

One of the things that I emphasize a lot throughout the day is it's not about you. This is not about how you feel about Down syndrome. It's not about getting others to feel the way you do about Down syndrome. It's not telling others what you think they need to know about Down syndrome. It's actually listening and being there for them.

 

01:43:45:19 - 01:44:08:01

Heather Trammell

Whatever our new parents are thinking or feeling at that moment, however, whatever non people first language they use, if they have the R word Lacey in their entire conversation, if they're so upset, they can hardly get through a sentence with you. If they just think that the world is coming to an end. That's where they're at right now.

 

01:44:08:22 - 01:44:24:24

Heather Trammell

So listen to them right now. I'm sorry. That doesn't have to do with high functioning, low functioning subject of the day. But those just came up to me that we need to listen to people, listen to all people, regardless of whether they have spotlight activities or not.

 

01:44:25:19 - 01:44:47:03

Erin Croyle

And I think, too, we have to remember that the people that we're seeing who are doing the public speaking and out in front, they communicate in a traditional way. If we made an effort to communicate with other people who don't communicate traditionally, we would hear some amazing things from those people as well.

 

01:44:47:20 - 01:44:59:13

Heather Trammell

You would. You would. And we need to hear those people much more often than we do or have whatever they're trying to tell us translated so that the rest of us can understand. Yeah, agree, agree.

 

01:45:00:02 - 01:45:16:00

Erin Croyle

And keep in mind, too, that a lot of the people who are speaking and are able to communicate traditionally they're getting assistance in in writing those and in practicing. So there's no shame in anyone getting assistance, in communicating in the way that they do.

 

01:45:16:05 - 01:45:43:19

Heather Trammell

I mean, I think we forget that. I think that some of the local self advocates that I know who have done a lot of speaking from the platform keynote presentation, etc., they get a tremendous amount of help from their families to create those presentations. They're reading those presentations. They didn't memorize those presentations. They're reading them because they wrote them already and they had help writing them, right?

 

01:45:43:19 - 01:45:49:05

Heather Trammell

Yeah, absolutely. We all still need support. We all do. Good grief.

 

01:45:50:07 - 01:46:03:18

Erin Croyle

Everybody. The president of the United States has good writers, so let's do that. Some things. Heather, I have kept you for so long. Is there anything you want to add? I could talk about this forever, so.

 

01:46:03:20 - 01:46:14:04

Heather Trammell

Oh, I could talk with you about anything for hours. Same thing now. We covered a lot of really good stuff, Erin. Thank you.

 

01:46:20:24 - 01:46:35:07

Erin Croyle

And thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline.

 

01:46:35:10 - 01:46:44:07

Erin Croyle

And are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle.

We'll talk soon.