Episode 1: Pamela Cummings & Rachel Wright

In this episode of the podcast, renowned early intervention nurse / complex needs parent Rachel Wright joins Pamela Cummings, from the I-Team Early Intervention project.

They cover Wright’s journey from medical professional to mother, and specifically what she’s learned from being the mother of three sons, one of whom is a child with disabilities and complex needs. What can other parents learn about negotiating the journey through the medical jargon maze? And how can medical professionals be better partners to parents and other family members?

A full transcript appears below.

Pam Cummings: Okay. Hi Rachel. It’s nice to see you today. Thank you so much for joining us for our Center on Disability and Community Inclusion podcast. I am Pam Cummings and I’m the physical therapy consultant and project coordinator of the I-Team Early Intervention Project. We are a project at CDCI. Our role, we’re interdisciplinary. There is me and an occupational therapy consultant and a communication consultant and a family support person. We support early intervention teams who are working with children who have the most complex needs. We do that through consultation and also through trainings across the state of Vermont. Rachel, I would love to have you introduce yourself and tell us how you came to find yourself on both sides of the bed.

Rachel Wright: I feel like I need to use lots of letters. You’re like C D C I E, but I don’t have any letters.

Pam Cummings: We have lots of acronyms.

Rachel Wright: I don’t, I don’t have as many letters as you. I could, I could maybe make some up. Yeah. My, I have a BSC in nursing. There you go. I’ve got one. I went to KCL, which is Kings College London, and did my nursing degree. So yes, I’m Rachel. I am a qualified nurse and I’m very cliche. I met my current husband, current like I’m gonna get another one. I don’t intend to get another one. And my, my one and only hopefully husband <laugh> I’ve known since I was a kid and we got together when we were teenagers. And just to, just to finish off the cliche, he’s a doctor.

Pam Cummings: Of course. <laugh>

Rachel Wright: Of course.

Pam Cummings: <laugh>

Rachel Wright: So Tim and I got together when we were in our late teens and I did apply for medical school, but I wasn’t clever enough.

Pam Cummings: Oh, that’s not true.

Rachel Wright: It’s true, well, no, okay I might not have been. I didn’t, I’d have to have retaken my a-levels several times to get the grades I required, so I didn’t get into medical school. I resisted being a nurse, but I was a sciencey girl, so I went off and did nursing. I did a degree in nursing at Kings College London and I kind of envisaged Tim and I going off and saving the world, you know, one person at a time, like who wouldn’t? I’m a good Christian girl brought up in a Christian household and I just figured I would be another missionary across some other plane. So take down the cliche, I mean, you know, I imagine myself as Florence Knightingale <laugh> but also a little bit Laura Croft. You know, I’d kind of like a utility belt, you know, so the lady with the lamp, but also got some attitude.

Pam Cummings: I love it.

Rachel Wright: That’s what I was going for. Yeah. Completely.

Pam Cummings: That kind of worked out actually. <laugh>

Rachel Wright: I mean, I think I’m a perfect hybrid really. <laugh>

Pam Cummings: <laugh>

Rachel Wright: <laugh> So Tim, we actually got married before Tim finished medical school. And then we did a bit of traveling and went to Uganda and did some work there and did some out clinics in the outskirts and, and places in Rwanda. And then we did some work in New Zealand, and then we might have had a little bit of a jolly on the way home and gone to Australia and Thailand and various places. And that was great and then we got back and we decided to be grownups. So we got back and bought a house and got a mortgage. We didn’t really buy a house, let’s be honest. The bank owns the house for a very long time <laugh>.

And we decided to start a family. So got pregnant and it wasn’t until my eldest son was born 16 years ago now, that suddenly having spent being on one side of the bed, I’d worked in A&E, I had worked in elderly care, I had worked in ITU, and when I was doing traveling I worked in ICU and I worked in theaters and all sorts of places that I went from one side of the bed where I was breaking the news and telling people what was happening and seeing people’s lives change dramatically in what we call A&E and you guys ER, that suddenly people were breaking news to me because despite having a normal pregnancy, I mean, is any pregnancy normal?

Pam Cummings: <laugh> I mean, your pregnancy, which is how it always is.

Rachel Wright: A normal pregnancy. Is it normal to wake up and go out and then vomit in a curb on the way to the supermarket? I mean, it was normal in that sense. It was normal in that there weren’t any problems. But I don’t know, I still think your body growing at the rate of grass <laugh>

Pam Cummings: <laugh>

Rachel Wright: is weird. And you know, like, yeah, it was all just very strange. But

Pam Cummings: I had random nosebleeds with one of my pregnancies.

Rachel Wright: Oh, did you? Lovely.

Pam Cummings: Just sudden and I was doing direct care and so I’d be like, ‘Yeah, I’ll be back in, you know, 10, 15, this would take a long–

Rachel Wright: Sorry if I’ve just bled on your carpet <laugh>

Pam Cummings: Don’t mind the blood, it’s fine, we’re good. Can I use your bathroom for maybe 15 minutes? Then I’ll be back and then I’ll go home, then I’ll leave but anyway.

Rachel Wright: <laugh> Lovely.

Pam Cummings: Normal, normal.

Rachel Wright: Yeah, I didn’t, no nosebleeds, but lots of, lots of puking. I couldn’t do the bread aisle.

Pam Cummings: Oh yeah.

Rachel Wright: There was something about bread. I couldn’t cope with the smell of bread. So I’d like, walk into a shop and then I’d just be like, ‘Oh, nope’

Pam Cummings: <laugh> Nope.

Rachel Wright: Can’t do it. I’m good, I’ll come back. I’ll come back. Oh, anyway, I don’t miss being pregnant. But it was all quite normal, then the boy turned up having the night before I couldn’t feel him move. And I woke up in the middle of the night stressed that I couldn’t feel my baby move, but I’d felt a move the day before and Tim and I decided to go to the hospital the next morning if we still couldn’t feel him move, cause Tim had reminded me of times that I’d complained him kicking, you know, the baby was kicking my bump and stuff. Tim tuned off to work on the morning of my due date and I called up the midwives and said, ‘So I can’t feel the baby move’ and they’re like, ‘Well, it’s probably all fine, but why don’t you come in and we’ll get you checked out, but have some breakfast first.’

Like, nothing to worry about, there there. I turned up and they strapped a monitor on me and I heard a heartbeat. So, you know, first big deep breath. Tim rushed up from the ward and heard the heartbeat and a second big, deep breath. But the baby still wasn’t moving. I was given this little red button, you know, a little bit, sort of Austin Powers like if I press this, it’s gonna eject me from my hospital bed.

Pam Cummings: <laugh>

Rachel Wright: But I never had reason to press this red button because the red button was, your baby is moving and you can feel a kick. But I didn’t ever feel the baby move and I had a scan, an ultrasound scan, and they said all the blood sort of, you know, looks like it’s all moving around absolutely fine. We can’t see what the problem is, but given we still can’t see your baby move, let’s get that baby out. So we went across to the labor ward, they said it’ll be too long being a first-time mother to try an induction. So sunroof it was and we had a cesarean

Pam Cummings: Sunroof, is that what you called it?

Rachel Wright: Yeah, that’s, well, you know there are two ways for a baby to come out. And this was

 [Together]: The sunroof.

Pam Cummings: <laugh> Sorry, is the other the trunk? What is the other?

Rachel Wright: <laugh> I haven’t gone that far to decide what the other version, like the exhaust? Maybe? I mean, you know, I’m not sure

Pam Cummings: Okay, not quite the exhaust.

Rachel Wright: Maybe that analogy stays with the sunroof. <laugh>

Pam Cummings: The sunroof, just the sunroof. Okay, got it. <laugh>

Rachel Wright: It’s just the sunroof. <laugh>

Pam Cummings: <laugh>

Rachel Wright: Yeah. Anyway.

Pam Cummings: Okay, I like that.

Rachel Wright: I guess it’s a door. It’s just the other way is a door. Just the way it’s supposed to be coming in and out.

Pam Cummings: Yeah, okay. The door, that works. Cause you wouldn’t be in the trunk. Okay, go on, sorry.

Rachel Wright: Yeah, we could get very tied up in that. So anyway, cesarean section was the way forward. And the doctor was like, ‘I’m 90% sure your baby’s gonna be absolutely fine, but we need to get on with this.’ And we’re like, ‘Okay, yep, no problem.’ Into a clinical gown. And then they tell you to like bend over. Like, you’re nine months pregnant and you have to like crunch so that your spine sticks out.

Pam Cummings: Yeah.

Rachel Wright: For the spinal block. Like, what is that even? It’s like, I’ve not been able to see my toes for four months and you want me to stick my spine out? And then you see the size of the needle and you’re like, ‘Oh, ok. I’m doing it. I’m doing it. There you go.’

Pam Cummings: I can totally do it.

Rachel Wright: Is it alright? Can you see? Please tell me you can see my spine. Cause those needles are massive.

Pam Cummings: Yes.

Rachel Wright: Absolutely huge. Anyway, legs fizzing and tingling land on the bed, the thing gets erected between me and the lower part of my body. Tim stays head end, being a doctor and having done some time in surgery and stuff, he is absolutely fine cutting people open, but not his wife it seems.

Pam Cummings: He didn’t want to have to see that.

Rachel Wright: Suddenly, it was less okay. <laugh> So he stayed up by my head and the baby was born and they said, ‘It’s a boy and we’re like, ‘Yay.’ And then the baby was taken off and I couldn’t hear him cry. And that was genuinely the first time, I think that really was the first time I thought, like, I thought stuff was going wrong before that, but in a kind of other person way, does that make sense? Like it was, you know, I’m great at imagining bad things happening <laugh> I’m really good at that.

I have that down to a T. I can imagine all the potential negative things that could occur. And it was only when I didn’t hear the crying that that reality landed in me and in the situation. And Tim went backwards and forwards and told me that, you know, the theater was suddenly way more quiet. Everyone was very busy, but the chatter and the hum and the kind of busyness was suddenly, I mean, I felt a change in tension very significantly. And Tim said ‘He’s not breathing. He’s being resuscitated.’

Pam Cummings: Oh.

Rachel Wright: And then it all changes. I got to see the top of his head before he was whisked off to neonatal intensive care. And Tim got out of his blues and went to try and see him and I’m obviously being sewn up by a poor doctor who’s actually beside herself because it was her first kind of not-great outcome. And I remember sitting in recovery and dozing off and being how on earth, like waking up with that–

Pam Cummings: How could I be sleeping?

Rachel Wright: How could I go to sleep? How can I be in this situation that I don’t know if my son is alive or not and I’m managing to doze off? But I was obviously up to my eyeballs with medication. And actually, in the preceding 16 years, it is very useful to be able to sleep anywhere and everywhere because there have been numerous hospital beds and floors and all sorts of places that I have been required to sleep whilst he’s needing to be looked after.

So he got whisked off. We do have a faith so our minister turned up and there was lots of praying and texts went out. It was pre-Facebook, you know, the good old days when you had to text people. And then we were given, sort of the next day or two, we were given the chance that he wouldn’t survive, the chance that he would be absolutely fine, and then this big gray bit in the middle.

And we very firmly landed in the gray bit. We didn’t know that though until for another 10 weeks. So he was in hospital for about 12 days. Amazingly came out without being on, not on any medication, not, like no assisted feeding. He was being breastfed. When I had my second child, I realized I was a bit rubbish at breastfeeding, but I didn’t realize that because I’d never breastfed anybody before that time.

Pam Cummings: Yeah, you were doing it.

Rachel Wright: And it was, it seemed to be working. I’d used a pump, I mean that’s a whole other thing. Talk about like being Daisy, the cow, like in hospital while your baby’s in SCBU.

Pam Cummings: Yes, and pumping.

Rachel Wright: And you attach this pump to you, oh my days.

Pam Cummings: Yes.

Rachel Wright: Weird.

Pam Cummings: Breastfeeding is wonderful. Pumping, not wonderful. Not, yeah.

Rachel Wright: And, go on.

Pam Cummings: Was he breastfeeding directly or was he drinking from his mouth?

Rachel Wright: Drinking breast milk. So when he was first born, he had an NG and they give him fluids. And then he had my expressed milk. He only ever had expressed milk when he was in hospital and he was breastfeeding by the time he left.

Pam Cummings: Wow. I mean, that’s a really good sign, right? He’s managing the sucks well.

Rachel Wright: Absolutely, yeah. But we left with this optimism that we were taking our miracle baby home.

Pam Cummings: You did it. Yes.

Rachel Wright: Yay. And we came home with our arms full of gifts and balloons and baby and thrust into this whole 24-hour thing. You know, suddenly there’s two o’clock twice a day <laugh>, not just once a day.

Pam Cummings: <laugh>

Rachel Wright: Suddenly there’s three o’clock not just in the afternoon. And then there’s things coming out of all sorts of orifices. There’s sunroofs and boots and doors and exohrt, like oh.

Pam Cummings: <laugh> And sometimes very forcefully, yes.

Rachel Wright: Exactly. And you know, when you’re trying to like, not turn the light on too bright so the baby doesn’t completely wake up and then you’re like, ‘nah, I’m gonna have to turn the light on because I have no idea whatever that was, where it landed, what I need to clean up’ yeah. So that was the normal carnage that happens after a newborn baby. And it wasn’t until we were going for an MRI scan. He had an MRI scan booked for 10 weeks, his six-week check, which is routine, was alright. They were like, kind of like the pediatric consultant was like, kind of crossed his fingers and maybe he’s been lucky cause he looked like he was tracking and he looked like he might be smiling. And the MRI, I mean, I don’t want a bit of a spoiler alert, but the fact that we’re talking about this means the MRI didn’t quite work out as we’d hoped.

And we left that appointment clinging to each other, having all of the things that I don’t think we even realized we’d anticipated. You know, it isn’t until something is in jeopardy or something is no longer something that can be assumed that you realize that was an expectation in your life, an expectation that was gonna happen. So first steps, first words, first school, like all this stuff suddenly kind of wafted <laugh> into somewhere else.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: Because we were no longer able to assume cause they said he had severe and complex brain damage. They kind of used words like all, all parts of his brain and the gray matter and the white matter and severe and all that kind of stuff. And in the middle of that appointment, I remember just thinking, how did I let this happen?

Pam Cummings: Oh.

Rachel Wright: How did I carry on doing all the things in my day when this –

Pam Cummings: is happening.

Rachel Wright: And this major moment that was gonna take us so off script on what we had predicted, you know, up until that point we were on point for the narrative. <laugh>

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: And then suddenly the narrative to –

Pam Cummings: So when going into the MRI appointment or the results appointment –

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Did you, were you like, it’s fine, this is gonna validate that it’s fine? Or did you have a gut that maybe it’s not gonna be quite fine? Or just where was your head at?

Rachel Wright: So the gut moment, the kind of stone in your stomach that says ‘Mmm,’ happened about 10 days, maybe two weeks before the appointment when it’d been after the six-week scan and I’d noticed a crease on Sam’s head. And the bone and his seam in his head and I measured, I got the measuring tape out and measured it and realized the nurse at his six-week check had in inaccurately measured his head circumference.

Pam Cummings: Oh.

Rachel Wright: So they had put his head circumference down as being on track. And when I measured it, it was not on track. He was born with a normal head circumference. And then by six weeks, well now this was eight weeks, it had tailed off and it was like down to 20, then zero kind of type centile.

Pam Cummings: So you were like ‘hmm.’

Rachel Wright: So that was ‘hmm.’ So Tim and I had, and Tim’s a GP, so, you know, he was like, I don’t think this is very good, but maybe it’s okay? Kind of clinging to –

Pam Cummings: And it seems okay, he’s doing all the things we would expect him to do.

Rachel Wright: He’s yeah, I mean, again, with hindsight, he was floppy.

Pam Cummings: <laugh>

Rachel Wright: He didn’t, he didn’t hold the way my other babies did. But that early it wasn’t ever gonna be something that we’re really sure of

Pam Cummings: Mm-hmm. <affirmative>.

Rachel Wright: So by 10 weeks we went in for the MRI and I was, and we were both worried, and we kind of said to the consultant, the registrar that came and spoke to us to kind of clock us in for the MRI cause he was gonna have to have a sedative for the MRI. We were like, and they’re like, is everything fine? We’re like, ‘Yeah, he’s feeding, he’s putting on weight, Da da da. The only thing is maybe his head circumference.’ In the hope that she’d be like, ‘Oh, that’s ok. Don’t worry about that.’ And actually, she just did not do that at all. She went–

Pam Cummings: Ohh.

Rachel Wright: Ohh, exactly that.

Pam Cummings: Yeah.

Rachel Wright: ‘Oh, hmm. Okay. Thanks for that information. I’ll just scribble that down and put a big underline on it.’

Pam Cummings: Her brain is going off.

Rachel Wright: Exactly. <laugh> I’ll just get my highlighter out.

Pam Cummings: <laugh>.

Rachel Wright: And put a big asterisk next to that thing. It’s like, ‘Oh.’ Yeah. So that was, and I remember, I remember so clearly sitting on the plastic red chairs outside the MRI scan feeling like these people were inside the scanning room. It’s like, it’s like sitting, I mean, I’ve never been, but I imagine it’s like someone reading your taro cards or somebody like getting this crystal ball out because they were in there with getting information that was gonna tell me what my future was.

Pam Cummings: The rest of your life mm-hmm. <affirmative>

Rachel Wright: That’s it.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: And I just felt I should have a more comfortable chair.

Pam Cummings: <laugh>.

Rachel Wright: <laugh>. You know

Pam Cummings: This chair is not okay <laugh>

Rachel Wright: This is gonna be one of the most significant moments in my life. I ought to have a better chair. And there shouldn’t be people trying to take out my toes with wheelchairs and trolleys zooming past, like.

Pam Cummings: Give me space, a more comfortable chair and maybe strap me down a little bit. I might need to be strapped down for this part.

Rachel Wright: I just feel like this moment should be more. But that’s not when we’re told the –

Pam Cummings: That’s when you’re waiting.

Rachel Wright: Radiogropher was but yeah she came out and she was like ‘so the doctor will bring you through and give you the results in a while. Go back up to the ward, feed your baby da da da.’ And I just shot Tim a glance and I said, ‘That’s not good.’ If it was some, if she had any, casue I know that if I was talking to somebody and I was able to give them, ‘this is gonna be okay,’ I would’ve given them a ‘It’s all right, the doctor will be seeing you, but it all looks good.’

Pam Cummings: You’re good.

Rachel Wright: You know you’re good, exactly. But there was no ‘you’re good’ indication. So I think I knew at that and, and Tim was like, ‘Let’s just wait.’ And one of the things he had said to me, I don’t exactly know when, but he was like, ‘The baby we’re taking into this appointment is the same baby as we’re taking out.’

Pam Cummings: I was gonna ask you that. Did he seem different before and after? Because I know that that is something other families deal with. Like, they, even when they get diagnoses at older ages, they’ve had this child for three years and now they get a name for what it is.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And it’s the same baby. It’s the same kid. Right. But you, your perception is different now. Right?

Rachel Wright: Definitely, it’s me that changes. Definitely, it’s me that changes whether, and I guess, I guess it’s not surprising. It’s like that sort of scales before your eyes that is that, that everything in the world looks different. And I, I write about it in my book ‘The Skies I’m Under’ I write about the difference between that journey there. So we’d, Tim and I both trained in London and the appointment was in London. We’d got the train. And so there was lots of familiarity about the stations and the stops and whatever else.

But that journey home, everything looked different. It was, it was so similar. Do you know what I mean? There was something so normal and comforting about it being familiar because we knew it and we’d been there, but suddenly it all looked different. It all, you looked at steps differently, you looked at people’s expectations differently, you looked at you just looked at everything differently. And, and that, you know, we actually left the hospital and my closest friend at the time was having a baby that day. And so actually went and visited her. She’d had a cesarean that day. So we actually turned up to the hospital and they obviously knew that we had gone for this appointment. And so we were at the hospital saying, ‘Yeah, it’s not good news’ whilst being introduced to her.

Pam Cummings: Her new baby.

Rachel Wright: Yeah so that was a paradox and a half. And that was a few days before, that was a few days before Christmas. That was the 20th of December.

Pam Cummings: Oh.

Rachel Wright: So that changed that Christmas dramatically. But I guess the thing that happened there was we just, we went off script. We went in a completely different direction and I, the first thing that I did, I think at that point was I realized it was too hard to be disappointed by what didn’t then happen. And I had to come from a place of not expecting anything to happen.

Pam Cummings: Oh, interesting.

Rachel Wright: But not in a, so Tim’s, Tim’s granddad used to say, ‘expect the worst and plan for the best,’ or something like that. Do you know what I mean?

Pam Cummings: <laugh>

Rachel Wright: Hope for the best

Pam Cummings: Plan for the worst

Rachel Wright: Let’s make sure that, you know, we’re leaving room for good things to happen.

Pam Cummings: Yes.

Rachel Wright: But let’s be honest, it’s, not.

Pam Cummings: We’ve got our bag packed. Yes, yes.

Rachel Wright: <laugh>. Exactly. <laugh>.

Pam Cummings: But everything could possibly go wrong.

Rachel Wright: Yeah. And I think, I think I, to protect my own heart from the perpetual disappointment, I kind of had to strip back to this is where we are and how do we move from here? I don’t know that I did that very well, but that’s what I was aiming for.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: Because I couldn’t, I couldn’t be like, Oh, he’s, you know, I’m, I’m, I’m hoping that he’s gonna be able to step or walk or do this. Oh no, he’s not. Oh, I’m hoping that he can see and did it. Oh, he’s not. Oh, I’m hoping that he can. But actually, that’s, that, that is definitely what it felt like those first couple of years. I talk again in the book, I talk about this, just feeling like you’re in the ring and that, that every time you get yourself up within those first three or four years of diagnosis, it’s not just one thing.

Pam Cummings: You’re back down.

Rachel Wright: It’s always the next thing and another sucker punch and another thing that gets you on the canvas and it’s, there is a repeated you fall down a rabbit warren of disability diagnoses like this. It just feels endless.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: Those first–

Pam Cummings: More diagnoses,

Rachel Wright: Yeah.

Pam Cummings: More piled on.

Rachel Wright: Another, another person that you need to meet, another appointment that you need to do, another therapy you need to consider, another problem that could be on the horizon.

Pam Cummings: And now there’s 10 people in the room, now there’s 15 people, now there’s 100 people. Right. I, I, I do get that. I, we’ve heard that from families. Sometimes the next diagnosis is just like another diagnosis.

Rachel Wright: Yeah.

Pam Cummings: It’s just too much. Like, we, we’ve got this, we can’t have that too. Even if it’s associated, whatever.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: In my mind, it’s all those together. But note that one more thing. It just, I I do see that as a challenge.

Rachel Wright: You cannot add another thing to my list, my son’s list of stuff at the stuff at the top of the letters.

Pam Cummings: Yeah.

Rachel Wright: Can we, can we peak at four?

Pam Cummings: Mm-hmm. <affirmative>.

Rachel Wright: And then can you like, appendix it? <laugh>

Pam Cummings: <laugh> The four is it.

Rachel Wright: I just don’t need any more added to that list. But it feels, and everybody gives you those diagnoses casue they think they’re helpful cause they’re trying to give you information and information is power. And it’s, it’s how we, you know, help, help, and support people. But it, it is, it is emotionally exhausting recalibrating yourself to this next thing. I, I remember saying to Tim, ‘I just wish they’d tell me everything.’ Like, I just want to know all of it here and now, just tell me it’ll be awful and then I’ll get up and we’ll get on with it. But with hindsight, maybe that wasn’t really such a great idea either. <laugh> Maybe I wouldn’t have got up.

Pam Cummings: Yeah.

Rachel Wright: If someone had, but I do remember some of those appointments where doctors told us the next thing, like you’re, you know, at one point a doctor says ‘hopefully they’ll stand, your son will stand, but he probably won’t walk functionally.’ That was way over that like, that he’s so far from that being a thing. But at the time, that felt like a loss. At the time that felt, ah, that’s something I had hoped.

Pam Cummings: You didn’t really need to know that yet. Yeah

Rachel Wright: Well, I did want to know that. I was actually really annoyed that when I spoke to the physio, my local physio about it she’s like, ‘Yeah, yeah, I thought that.’ I’m like, ‘oh why didn’t you tell me?’

Pam Cummings: Yes.

Rachel Wright: I was actually really cross that somebody who I thought I was close to professionally that was working with, we were focused on helping my son, had information that I didn’t have. I didn’t like that.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: So I wanted to know. But it was, it’s, it’s, yeah, just always tricky balancing the information. Anyways, we’re at this appointment and I remember sitting in the waiting room and there being all these older children who were very obviously severely disabled and had really complex needs. And they were making noises and dribbling and had specialist chairs and neckerchiefs and suction things and all this stuff. And I just looked at this baby in front of me that was six months old. And yeah, he wouldn’t look me in the eyes and yeah, he wasn’t picking things up and putting them in his mouth, but he was just my baby and I could not, I genuinely could not see my life with him as a 13-year-old.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: I couldn’t picture it. I couldn’t. And maybe actually what I couldn’t imagine was not so much him because those children were in front of me and I’m a nurse and I know what those, you know, what children with really complex needs looks like, what I couldn’t imagine was myself.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright:And I couldn’t imagine my life within that story

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: Within his life. And I think that was what I couldn’t or I couldn’t really articulate and what the, the impact that had, was I stopped being able to dream or imagine a future.

Pam Cummings: Mm-hmm. <affirmative> At all.

Rachel Wright: At all.

Pam Cummings: Yeah, yeah.

Rachel Wright: Because I couldn’t think, Oh, when he’s five then we’ll be doing this or that. I just, I just stopped being able to see, like I said, him and therefore me.

Pam Cummings: Mm-hmm. <affirmative> I met a family once and the child was young and not diagnosed yet, but they knew there was something, they hadn’t gotten the diagnosis and they, they really enjoyed the traditions of Halloween and Christmas. And the fa–, one of the parents said ‘well now those are ruined.’ Like, like the child has basically ruined these because the child’s not gonna be able to do the things we would’ve expected them to. You know, And it was really interesting the focus on that. But that was the visualization.

Rachel Wright: Yeah.

Pam Cummings: That what happens when you have a child, you imagine Christmas and what Christmas is like with this child.

Rachel Wright: mm-hmm. <affirmative>

Pam Cummings: Right?

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: So, yeah. It’s really interesting.

Rachel Wright: And it’s, it, it does really boil down to, I think it boils down to what we think are the parts of life that we most treasure and enjoy. So I remember when my son was, had his barium swallow, and again, another corridor with another cheap rubbish seat with trolleys zooming past my feet, someone decides to tell me never to feed my son again.

Pam Cummings: Mm-hmm. <affirmative>.

Rachel Wright: And, and I, I realized that the thing that I came down to weeks after that, was my, the loss that I felt was much more about what I thought.

Pam Cummings: What’s a typical meal look like in your house? What, what does dinner look like with your children?

Rachel Wright: What does a beach day look like? They’re an ice cream. What does grandma coming to visit look like? A curly whirly. What does, as in a chocolate bar with toffee in the middle. What does Christmas look like? Christmas dinner. What does birthdays look like? Birthday cake. I’m not saying my whole world revolves around food.

Pam Cummings: <laugh>

Rachel Wright: But it does <laugh>, but it does. I taste and smell and savor the seasons and festivities and things through food <laugh>. So the idea of him not experiencing that stuff, my heartbreak and loss over that was so much more tied up with my perception of what was important in life rather than what he actually enjoyed or savored or appreciated. Because he actually found eating quite stressful, unsurprisingly, because it was going into his lungs. You know what I mean? It wasn’t, it wasn’t funnily enough.

Pam Cummings: Yeah.

Rachel Wright: It wasn’t like he, he didn’t, he didn’t see food coming because of the vision impairment, he, he would eat or whatever, but it wasn’t, it didn’t give him the same joy that a tub of ice cream gives me.

Pam Cummings: <laugh>. He didn’t have the associations with it. Right.

Rachel Wright: Exactly. So, so when, and so I guess that’s the same for the parent that you’re talking about, the things that are, are our markers in life. And I think, do you know what, I think this is one of the things that why parents like me get so obsessed with things like talking and walking.

Pam Cummings: All parents, but go on. <laugh>

Rachel Wright: Because, well, but, but it’s parents like me in that when you know your child’s gonna walk and talk, then that’s just a thing, isn’t it? There’s no, there’s no baggage along with that. But as soon as your child has complex needs or has a disability, then are they gonna need a wheelchair? Like that, it seems like a marker, doesn’t it? It feels like a thing. Are they gonna, are they gonna talk?

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: And I guess we could say, well that’s, that’s understandable because they’re, they’re our means of getting around and our means of communicating. But I feel like you’re not saying to people, you know, is my son gonna be able to get around? That’s not the question, is it? Is my son gonna be able to express his needs and his desires? That’s not the question. It’s something to do with words and it’s something to do with steps.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: And again, I think that’s to do with the baggage that we bring along that is the magic of those first words. The magic of those first steps.

Pam Cummings: Those first steps. It’s in every Hallmark commercial, right?

Rachel Wright: It is.

Pam Cummings: Yeah. I’ve never had a parent say, ‘I want my child to be, to have mobility and communication.’

Rachel Wright: Exactly.

Pam Cummings: They say walking and talking.

Rachel Wright: Yeah.

Pam Cummings: That is what parents want. And then mobility and communication, the fact that it’s possible.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Can we give them ways to access those things? That becomes very exciting when it’s understood that those are, there are other ways to be able to be mobile and to communicate, but walking and talking still is the thing, right?

Rachel Wright: So I think the, the walking and talking thing, the transition from, from one side of the bed for me to the other was I guess there was another transition after that. So there was landing in the place of, of my son having a disability, and then there’s landing in the place of which I’m still working on, I’m not gonna say I’ve got both feet on the ground on this one. Landing in the place where, exactly what you said, it isn’t necessarily about the walking and the talking, it’s about breaking down even more what the essence of life and enjoyment is. And it isn’t, ooh, that was my phone. Or was that your phone?

Pam Cummings: Nope, that’s you.

Rachel Wright: Okay. Sorry. Oh, if I, if I knew where it was, then I would stop it from doing back. I don’t see it. Oh, there is, here we go, let’s put on silent. Breaking down the essence of life in a way that it isn’t about the steps and the words, it’s about the moving and the communicating. But there is, I definitely think there is a process for us parents where we have to work through that.

Pam Cummings: To get there.

Rachel Wright: Emotionally, yeah. I just, I don’t think anyone can rush that.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: We all do it in different ways and different things. There’ll be certain things that are more meaningful or more difficult because of our own, the, the parts of our life that are important to us. That we fear our sons and daughters are not suddenly able to do.

Pam Cummings: I think that the other part of it is joy, right? Like, finding joy in life. And what I think brings me joy.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And it, it might not even be what, you know, any of my children, right? Any of them are thinking.

Rachel Wright: <laugh> No.

Pam Cummings: Right, who knows?

Rachel Wright: That’s a parenting fail that we all do, isn’t it?

Pam Cummings: We just assume that.

Rachel Wright: Yeah, exactly. You’ll be really happy if you get really good grades and get a, this kind of job that I think is really good. Even though they’re like, No, I’ll be really happy if you let me go in the Xbox for an extra three hours.

Pam Cummings: <laugh>

Rachel Wright: That’s where my joy is. Are you sure?

Pam Cummings: Broadway, I love broadway.

Rachel Wright: Are you sure you don’t want?

Pam Cummings: I’m gonna bring you to broadway all along your childhood.

Rachel Wright: And you will love it.

Pam Cummings: You’ll love it. You will love it. And then, huh, funny, maybe not so much, right? But anyway, but joy, I mean, communication and mobility is very important, obviously, but, but joy, right?

Rachel Wright: Mm-hmm. <affirmative>.

Pam Cummings: There’s a lot of negative experiences that have to happen when you have medical diagnoses and to make sure that there’s pleasurable things that happen too, positive experiences and honing in with your child on what that is.

Rachel Wright: Yeah.

Pam Cummings: So that you can help be part of it, provide it, be part of it, whatever. Yeah.

Rachel Wright: And you keep, and you keep coming back to ensuring that those, those other things are part and parcel of all of your world. I think that’s something that both practitioners and parents can get lost into, like I say, you fall down this rabbit warren of diagnoses and therapies and everything else, and it’s so easy to get sucked into that world and miss the joy.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: Miss the simple, powerful, authentic, meaningful aspects of life that, that are just drowned out with the noise of medical jargon for one. Do you know what I mean? And, and schedules essentially.

Pam Cummings: This is an aside, but have you seen the video including Samuel?

Rachel Wright: No.

Pam Cummings: Do you know what that is?

Rachel Wright: No.

Pam Cummings: I’ll send you a link.

Rachel Wright: Okay.

Pam Cummings: I’ll, I’ll, I’ll show you, I’ll share some information with you later about that.

Rachel Wright: Okay.

Pam Cummings: I think you would really like it. It’s about inclusion for this filmmaker is his, it’s his son, but, and so he decides to make a documentary film about how to, the navigating, how to have him be included in school. But what the, what reminded me of it is his brother, the, the relationship between the brothers.

Rachel Wright: Hmm.

Pam Cummings: And there’s a lot of joy there. And the brother is the one who knows how to get the joy from him.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And the two of them have such a great relationship. But I’ll share it with you. He’s a great, Dan Habib, he’s a great, cool documentary filmmaker. He’s done some cool things. Okay. You know, one thing that you said, which makes me, I know that a lot of the work that you do is about bringing parents and providers together to work together.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And we’re about to have, host a training with you doing just that. But when you talked about the physio who said, ‘Oh, I knew that’ was holding information or not even holding it, but had, didn’t feel like it was maybe the right time to bring it up.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Or wasn’t the person who could bring it up. But tell me more about that. Like how could that have gone better for you?

Rachel Wright: I think it’s really tricky because I reckon that I could probably have a similar story where she told me that information and I was peeved off with that. <laugh>

Pam Cummings: Definitely.

Rachel Wright: I don’t, I don’t know that there is a fail-safe way of treading this minefield of complexity of emotions and outcomes and reality that we weren’t expecting and we hadn’t planned for and were not equipped for.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: So I think.

Pam Cummings: Too early, too late, right?

Rachel Wright: Well, well, I think the, the, the thing that I come back to within my training again and again from both sides, it being about context and intent.

Pam Cummings: Hmm.

Rachel Wright: So if you have developed a trusting relationship with somebody, if you’re seeing them day in and day out, if you are in that place and you don’t share something that is very meaningful and significant, then you can’t be surprised when that is detrimental to that, that relationship.

Pam Cummings: Mm-hmm. <affirmative>.

Rachel Wright: I think, I think that people who see me once or twice, those, those consultants, nanny, those people in the locums in like kind of the, the doctors who see us once in a, in a, an appointment and not gonna see them again, are more likely to go, ‘Yep, well that’s that and that’s gonna, you know, that’s gonna be terrible for you. Never mind, here you go. There’s a prescription, off you.’

Pam Cummings: Trainer, yup.

Rachel Wright: Lovely. And are quite happy, quite happy might not be the word, but I’m more likely to give the bad, perceived bad news. The people who we see week in and week out, who we build up relationships with, who we know that we’re gonna be in our lives for years to come, are more hesitant to have those hard conversations. And I understand why because they’re hard conversations, and you don’t want to ruin relationships. But actually that vulnerability, that clash of humanity rather than schedules and appointments and roles and tasks is where things get real.

And it is so much nicer for somebody that you have trusted to sit with you and say, ‘you know, from the stuff that I’ve read and from previous people, this is what I’m thinking. And I’m, maybe I’m wrong. I’m not, I’m not, I’m not casting your child into being the same as everybody else. But I just want you to know that this is what I’m thinking and we’re working on this, and this because this is what we’re hoping for and this is what we’re working towards. And I wanna be pointing to the positive, but I, I don’t feel right knowing this without you also knowing this. Because if I have–’ That is my alarm telling me to do my son’s meds.

Pam Cummings: Oh.

Rachel Wright: So I’ll turn that off cause somebody else is gonna do that. So I think, I think the come, the issue comes back to sharing where we’re really at. And if, if I guess it feels like if that person is withholding information and not really being real and true, then you start questioning how much of what I think is a, is a professional relationship actually real and true? Like, do you really like me, or are you just, are you just putting on this role because you’re my son’s physiotherapist? Like, how much of that–

Pam Cummings: If you withhold other stuff then maybe you’re withholding that too

Rachel Wright: Exactly. Is this just all a game or a job? And that’s tricky when as a parent you are so vulnerable and so dependent on other people. So I think actually the people who I would love to be able to have more of those difficult conversations are those people who are in people’s lives for longer.

Pam Cummings: Mm-hmm. <affirmative> And you’ve developed those–

Rachel Wright: And developed those–

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: And knowing that you can weather the storm cause it will be like, it’s gonna be hard. Like that doesn’t make it a nicer, the news is still the news.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: It’s still not gonna necessarily land somewhere that’s uncomfortable, but you are suddenly in that place with somebody who isn’t shooing you out the door after 15 minutes, but is gonna come back next week and be like, ‘How are you after that conversation? That was really tricky.’

Pam Cummings: Mm-hmm. <affirmative> How do you, do you have more questions now that you’ve thought about it for a week? Yeah, I think when I was doing more direct care.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Direct care in people’s homes doing the direct physical therapy, I, I thought about that a lot. I knew that I came with all sorts of information.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And as I got to know a family and a child, I was, I knew stuff. I, I had some very educated guesses about what the future, you know, what things, how things might roll out.

Rachel Wright: Mm-hmm. <affirmative> Mm-hmm. <affirmative>

Pam Cummings: And, and I always wanted to make sure I came at it from a strong relationship.

Rachel Wright: Hmm.

Pam Cummings: So it was definitely harder if I didn’t have a strong relationship.

Rachel Wright: Yeah.

Pam Cummings: Cause then who am I, who am I in this, in this family’s life to come and give them some bad and bad news or whatever.

Rachel Wright: Mm-hmm. <affirmative> Mm-hmm. <affirmative>

Pam Cummings: And I also felt really strongly, and this is something I tried to teach other providers and other, like when I had students and things like, I’m the physio, right? If I’m not gonna talk about this, who is?

Rachel Wright: <laugh>

Pam Cummings: Like, there’s not someone else who’s in the house who knows this information about these stairs up to the bedroom, right? Like, we need to start talking and it’s expensive to change the bedroom. So I have to start now. I can’t worry, I mean, I can worry, but I can’t not bring it up.

Rachel Wright: Yeah.

Pam Cummings: Because I think the family can’t handle it or can’t is gonna kick me out or.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: What I don’t, you know, like they, or you know, that this is gonna take years for them to change the way this house is and they don’t even know that they have to do it right now. How can they even start planning if they don’t even know?

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Right. So I felt a lot like it’s my, this is my job. I think this is why the 24-hour postural care speaks to me so much.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Like I have to tell people about this.

Rachel Wright: Yeah.

Pam Cummings: They don’t know, I barely knew a couple years ago, right?

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: Like I, I’m in a role that allows me to have these conversations.

Rachel Wright: Yeah.

Pam Cummings: They’re not easy, but if we can’t not like who, you can’t not ever, you know, and like you said, if you wait too long, oh well.

Rachel Wright: Why didn’t you, why didn’t you tell me two years ago?

Pam Cummings: Two years ago.

Rachel Wright: Like, why did, I’ve just redecorated that staircase?

Pam Cummings: I just redorcated and you said nothing about the stairs?

Rachel Wright: I’ve just put a new wardrobe in that bedroom upstairs that’s not gonna fit downstairs.

Pam Cummings: I mean, it’s just.

Rachel Wright: Yeah.

Pam Cummings: I do think that’s interesting. But again, I think you’re right. It takes relationship building and trust to be able to be someone who can say that. The other thing that I think about with this, one thing that I, in my career that came about, which I didn’t have when I first started, was the gross motor classification system.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And I can, that is, I know you know what it is, but it’s a way to classify gross motor abilities in children primarily with cerebral palsy.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And scale from one to five. But, and there is some predictive value to it.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: That there has been longitudinal studies that if you are at one level when you’re about two, then you are likely gonna stay at that level. Things will change for you, you’ll grow and change. But the description of those levels stays. I wish I had that when I was a new therapist. I mean the, that, that is a concrete black and white way to say I’ve got some evidence and here’s what I know about this diagnosis. That, that helped me a lot.

Rachel Wright: Hmm.

Pam Cummings: It just felt like it gave me a little more, it’s not just me saying, I’ve seen a lot of kids like this and here’s what I think, right?

Rachel Wright: <laugh>

Pam Cummings: Here’s what I think’s gonna happen, right?

Rachel Wright: But it’s bigger than that. Yeah. I think that’s true. And I think, I think there is something about when you are talking about hard things, I talk about this in the training and stuff. When you talk about hard things, it is easier when you start talking about bones and muscles and bodies. And not about Jimmy or you know, Penelope or whatever. Like when you’re not talking, when we can take out some of the emotional baggage that comes in and say, so when, when a somebody’s trunk is really hypotonic, you know, is really floppy and sloppy, you know, then they’re gonna need support in this way. And that support is something that they need not just when they’re in their chair, but then when they’re in their bed or when they’re, you know, the whole way through the day and night. In the same way that gravity, funnily enough, doesn’t take a hiatus between the hours of 10 o’clock at night and nine o’clock in the morning.

Neither does my, your child’s patterns or whatever else. So and that’s, I’ve done a couple of animations talking about, you know, things because I think that it’s just, it’s also, it’s YouTube and you can watch it and then you can, you know, come across with questions or whatever. But it just takes a little bit of the, the emotions of it so that then, then the connection you have with the  practitioner can be with when you’re talking about your child. It can be about the specifics rather than this general whatever. Let’s get the, let’s have this general stuff evidenced and, you know, talked about in more maybe more black and white concrete type terms. Although let’s be honest, nothing’s a given no matter. Like medicine is still, you know, half made it right.

Pam Cummings: Right.

Rachel Wright: <laugh> We don’t actually know. but let’s, let’s keep the, or let’s keep the connection authentic and let’s keep the relationship intact. And I think it’s, but I think it is possible to, to think about our language and our communication in a way that we can have a difficult relationship and still have the opportunity to say hard things if we, I mean we have to, can only do our best. Some people are still unreasonable actually.

Pam Cummings: <laugh>

Rachel Wright: Just because, just because I have a child with a disability and just because you’re a clinical therapist does not mean that we’ve both had a personality transplant.

Pam Cummings: <laugh> We might not get along.

Rachel Wright: And suddenly, and suddenly we’re gonna get on beautifully. And we are both, you know, I, you know, like a saint obviously, and you are obviously, you know, your flo. The Florence Nightingale, the angelic kind of–

Pam Cummings: Coming in to fix it all.

Rachel Wright: Exactly. You’re gonna wasp in there. Wasp? I don’t know what that is, it’s like a whisk and a something else. I don’t know what you were doing.

Pam Cummings: Whisking.

Rachel Wright: But yeah, you’re gonna whisking you’re gonna swoop in and make it all fantastic really. But no, we’re still just people.

Pam Cummings: That’s like pinning your feet because you’re a saint, right?

Rachel Wright: Absolutely.

Pam Cummings: While I fix everything, yeah.

Rachel Wright: Yeah. You’ll fix it all and I’ll just diligently, quietly martyr my own life for the sake of my children.

Pam Cummings: <laugh>

Rachel Wright: Cause that’s what mothers do.

Pam Cummings: That is what mothers do. All right. We are gonna run out of time. I can’t believe it. And I would love, you have given some good advice about practitioner, providers and families working together. I love that idea of working from starting with like bones more generally and or specific to bones and muscles and this is what we know about this diagnosis.

Rachel Wright: Mm-hmm. <affirmative>

Pam Cummings: And then how does that impact, you know, when we’re talking about Jimmy, what does that mean? What other advice do you have for practitioners and families to work together better?

Rachel Wright: Okay, so whistle-stop cause we have just rambled on endlessly. So whistle-stop to providers, I think I would try to come back to you are a very small part of a very big picture. There is a lot of life going on that you don’t see. There is a lot of emotion going on that you will not bear witness to, but don’t ever assume that the one thing you’ve asked them to do is the most important thing you’ve asked them to do.

Pam Cummings: <laugh>

Rachel Wright: <laugh> So there is always more going on than you can think and that you can see. And I guess back to sort of Maya Angelou and, and what she says around how you make someone feel lasts longer than the words that you say. The details of your conversations will get lost with time. But the way in which you communicate with people and how they are left feeling that they’ve been heard, that they have connected with you, that you’re on their side, that you’re cheering them on, that you’re passionate about their child. Those, the essence of those things will supersede any of the other jargon that you end up throwing in their way.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: And I think if we can step past our professionalism into that humanity, that’s where great things happen. When we are two people who are being human and real. That’s when we get beyond our skills and that’s where the magic happens, where we can actually create something that is profound and, and really changes people’s lives from both sides.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: Of the, of the sort of relationship. From a family point of view. Okay, this is the advice I continue to give myself. <laugh>

Pam Cummings: <laugh>

Rachel Wright: Please don’t think I cannot, I am just as lost as the next parent. I’m just as, trying hard as the next parent. These are not things I have sussed, but I would say step into your own story, not the one you expected. It’s important to grieve and recognize and put framing around what you thought life was gonna look like and actually what it is because it’s only when we step into our own story that we can really move on. That’s Brene Brown. I don’t pretend that I–

Pam Cummings: <laugh>

Rachel Wright: I don’t pretend that I made that up at all.

Pam Cummings: No, you could have though.

Rachel Wright: I could, I could have wined that one. I could have pretended. No. Find your people, whether that’s in person, online I’m very diligent and careful about making sure that I have people within and beyond the disability world. That’s really important for me. Ask for help.

Pam Cummings: <laugh> It’s a tough one for a lot of people. Yes.

Rachel Wright: It is, but that comes from some weird fallacy that actual, when you talked about joy earlier, we have this weird gauge that joy comes from independence. We have this weird, and maybe that’s where the steps and the words come from too. We have this weird idea that joy and, and power and success comes from doing things on your own and without any help from anybody else. And it is.

Pam Cummings: <laugh>

Rachel Wright: Nonsense. See what I did there?

Pam Cummings: <laugh> Good job. <laugh>

Rachel Wright: Nonsense. <laugh>

Pam Cummings: Nonsense.

Rachel Wright: Nonsense. Because this is our one and only precious life and I, it’s my children’s one and only precious life and it’s my one and only precious life. So I am gonna ask for help because I think that makes their life better. I think it makes my life better. And I also want all of my children, not just my child with really complex needs, I’ve got two other boys as well. I want them to see that when they’re grownups, they deserve a life that is full of fun and joy and work and you know, play and all those other things. And so I, if I want that for them, I need to mirror that in my own life.

Pam Cummings: I love that.

Rachel Wright: And martyring myself for my children is not something I want them to do.

Pam Cummings: Never want them to do.

Rachel Wright: Not something I’m, not something I’m gonna model.

Pam Cummings: Mm-hmm. <affirmative>

Rachel Wright: I want them to think being a grownup isn’t hallmarked by martyrdom, but rather generosity for each other and for myself. So, ask for help.

Pam Cummings: I love this so much.



Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

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