CPF LIVE! with Lily and Tommy Collison

CPF Executive Director Rachel Byrne talks with Lily Collison and her son Tommy about their journey with Cerebral Palsy, Lily's book, Spastic Diplegia, Tommy's work and much more.

Transcript

Rachel:

Hello everybody. And welcome to today's Facebook Live. I am so excited to be joined by both Lily and Tommy Collison. Lily is joining us from Ireland. Tommy, you're joining us from California, but thank you both for joining us today.

Lily:

You're welcome. Lovely to be here.

Tommy:

Yeah. Thanks for having us.

Rachel:

Of course. So Lily is the author of a recently published book called Bilateral Spasticity, and Tommy is her son. And today I really want to have a chat about lots of different things. Obviously diving deeper into the book and the reasons why you've written this book, Lily. But also Tommy, sort of hearing about some of your stories of growing up and in the dynamics obviously of this sort of family.

Rachel:

Because I think the fascinating thing, and I'll put this out there to begin with, is that Tommy, you are also a writer. You graduated from NYU. And obviously now you've evolved into education, but you've got this similarity in how you want to educate and inform people, which is really quite remarkable.

Rachel:

But Lily, I'll start with you. So, when Tommy was born, do you just want to dive in a little bit about what it was like having Tommy grow up in Ireland?

Lily:

Okay. Tommy is the youngest of our three boys. So when Tommy was born, the other two boys were age four and six and Tommy arrived. So by then, my husband and I were quite relaxed as parents, we thought we had cracked this parenting lark. And Tommy arrived, but from the day after he was born, he cried incessantly. And it was like, so he was born a Friday night, Saturday, the crying started and it was the pitch of the cry that was very unusual, I thought.

Lily:

And I asked for him to be seen by a pediatrician, and the pediatrician reassured me, No, everything's fine. And I very happily took her reassurance. The incessant crying continued for three months. And I was trying to breastfeed Tommy and the feeds were being returned and it was just very difficult.

Lily:

You can imagine that in a busy family of three boys, both parents working. And obviously I was off with Tommy's birth, but it was still very difficult. And then after the three months, the crying stopped and Tommy settled into a very placid and happy child.

Lily:

But over the next few months he wasn't meeting his developmental milestones. He wasn't able to sit, he wasn't able to stand. So he was termed developmentally delayed and that continued until he was about one. And there was still no diagnosis. You know, it was just this kind of... It was like, it was just developmental delay. So I just took myself off for a second opinion, took Tommy off for a second opinion to a pediatrician. And as I say in the book, it was a straight- talking pediatrician and he just examined Tommy and said, Do you not know what's wrong with him? He's CP.

Lily:

And he followed it up immediately with, And if I want to know how this child will turn out, I don't look at the child, I look at the mother. And that was, Wow. You know what I mean? In the sense of, I felt, I didn't... Like other people said, Wow, did he really say that to you? And I said, Yeah, but I actually felt he was putting it up to me, in the sense that you're being set a challenge.

Lily:

But that day when he told me Tommy had CP, I didn't even know what the term meant. I was familiar with the term, like I'd heard of cerebral palsy, but I didn't know what it meant. And I set about then educating myself, you know? And it was over the next few years, trying to educate myself in the condition, because it's a complex condition. And Tommy has spastic diplegia, that type of CP. And I just found it hard to understand.

Lily:

So that's what led to sort of a lot of reading and a lot of studying. And eventually, Tommy, if you don't mind me saying, 25 years later, the publication of this book. That's sort of what you learned, the learning started then, and it led me to just research and write this book.

Rachel:

I think it's such a remarkable story. Because as you said, it's 25 years of learning and education that have gone into this book. But to go back a couple of years earlier, I suppose, and to sort of look at your journey and Tommy, your journey as well. Obviously, diagnosed at 12 months of age and then what? Tommy, what was your childhood like? What was it like growing up, also with a mother like Lily, who is an absolute powerhouse on different things? You know, what was it like growing up, I suppose, in Ireland?

Tommy:

Yeah. I mean, to some extent it's kind of hard to know the counterfactual. Like she is the best and only mother I've had. But I mean, kind of growing up, it was interesting because my diagnosis was kind of when mom got to work. And she kind of took it upon herself to learn everything she could, and to kind of make sure that this disability kind of impacted me no more than it needed to. That there were probably some things that I wasn't going to be able to do, that I was never going to be able to do. I was probably never going to be a professional footballer. But you know, most people are probably not going to be professional footballers. And so there's an extent to which there was just this kind of pragmatism that mom brought to it, I think.

Tommy:

And then as far as kind of growing up, I was the youngest of three, so I had two older brothers. We were all very, very close. We grew up in rural Ireland, so kind of in the middle of nowhere, with not much except cows and computers around.

Tommy:

And so we were all very, very close. We all got into the internet pretty early when it came out. But yeah, from a kind of diagnostic standpoint or from the viewpoint of CP, mom always made sure that I saw the PT and we were kind of very, very religious about doing the homework that the PT gave us. And she was both very assertive in making sure that these things got done, in kind of a nice way, but very adamant that the PT got done. But at the same time, I had a totally normal childhood apart from that, you know what I mean? Like with all the kind of usual kind of family stuff, and, yeah, so it was good.

Rachel:

So Lily, we talk about rural Ireland, right? And I think it's a pretty amazing story going from rural Ireland now to sort of publishing this book and having the experiences that you've both had within the US. But take us back then, because when, obviously, Tommy was young, the internet had just started. There wasn't Google, there wasn't these different things. And so where did you start looking for, I suppose, what to do?

Lily:

I suppose in those days it was books, right? I would, I suppose we traveled a good bit and I would... Anywhere I was, bookshops were a target of mine in the sense of, to look at sort of like any of the books that were written about CP, I would seek out. So anytime we were in a foreign, were anywhere, I would seek out books.

Lily:

But I was very lucky because a community, physical therapists who treated Tommy, but she knew I was very interested in learning. And she had actually worked at Great Ormond Street Hospital and had come back to Ireland, and she knew I was interested. And she, and I just took it out. She gave me a copy, I've lost the dust cover over the years, of Dr. Gage at Gillette, his 1991 book. This is a book written by Dr. Gage, now retired. He was an orthopedic surgeon at Gillette.

Lily:

But this book was written by an orthopedic surgeon for orthopedic surgeons. I'm a mom, right. But I read this book cover to cover with the medical dictionary. Now I didn't understand the half of it, but I still got an awful lot out of it. And it was the first time, obviously Tommy has CP, but he has spastic diplegia. And it was the first time I read about spastic diplegia. Like Dr. Gage had written a section on diplegia in this book.

Lily:

And for instance, when Tommy was diagnosed, he had a CAT scan, he had a CAT scan almost immediately... So he's diagnosed at one, he had a CAT scan. And like, the consultant told me things like, if I can... It was sort of significant brain damage, not much active brain, go home and mind your other children. Right? Because on the scan you can see the brain damage. But literally the consultant told me, Go home and mind your other children.

Lily:

And yet Tommy was one at this stage, and he was a very alert and engaging child. Like he really, and I couldn't... What the consultant was saying to me, and the child I was holding, it just did not make sense, you know what I mean?

Lily:

And it wasn't that I was in denial. I don't, it wasn't... But I thought, but how can you say that? Not a much active brain. You can see the active brain going on here. You know what I mean? So I just parked what the consultant said in some little box in my mind. And it actually never came out since. Because like, if you listen to Tommy today, you would know there's plenty of active brain.

Lily:

But in Dr.Gage's book, it was the first time I read... So Tommy's about seven at this stage. It was the first time I read that generally, now generally, in spastic diplegia, there isn't a cognitive impairment. And I was also told to watch out for epilepsy. Generally in spastic diplegia epilepsy isn't common.

Lily:

So, I loved reading about spastic diplegia. That's what Tommy's diagnosis was. And that's what this book gave me. It was the first time I read specifics about spastic diplegia. And that's why I think it's very important for families to have educational materials by diagnosis. Like I don't want to... If I have throat cancer, I only want to learn about throat cancer. Don't tell me about other cancers. If my child, or if I have spastic diplegia, I only want to know about spastic diplegia. So I believe families need educational materials by diagnosis. So if my child's hemiplegic, give me hemiplegia information. If my child has diplegia, give me the information. So let's organize information by diagnosis and... Sorry, that's a long answer. Sorry.

Rachel:

No, no. I think it's important, right? Because it goes to that point of empowering ourself with education and information. And I think it's actually really shaped, probably in a way, Tommy, kind of your career path and your knowledge.

Rachel:

And Lily, the fact now that 25 years later, you've got to this point of writing a book. And I look at your, I suppose, your enthusiasm and your extensive knowledge now, when it comes to cerebral palsy. And I think that's for everyone watching, when we talk about cerebral palsy, as if anyone watched last night with my talk with Dr. Hank Chambers, he said, Cerebral palsies, it is a group of conditions that are very different from each other, you know? Yes, they're all piled in together because of when that sort of brain injury may have occurred, but it's really are very different.

Rachel:

And so understanding those differences and understanding what can be done about them is so important. And I think that's sort of really remarkable that you had sort of this foresight and a... I think that the amazing thing is this go-getting attitude, Lily, that you've had.

Rachel:

And so Tommy, when you look at that, so your mom's done her research and done really good research. So for those watching as well, Dr. Jim Gage was at the forefront of cerebral palsy research. And is probably, if you want to say the godfather of cerebral palsy, he's pretty close to that. And definitely as a young physical therapist, that's who I was learning from. I was learning from the things that he was writing. So, Lily, I think it's important that you got the opportunity to learn that as well.

Rachel:

But Tommy, so what was it like the first time, I suppose, when you said, All right, I'm going to go to the US to have an operation. As a young kid, were you scared? Or what sort of, what were your feelings?

Tommy:

Yeah. And I think it's a testament to what mom was up to. Because I remember... I suppose when I remember this conversation, I can remember we were in the car, we were driving somewhere, and mom kind of broached the subject of, Oh, there's this surgery. Like if there was a surgery that could do X, Y, and Z, would you be interested in doing it? And I was like, kind of, Yes, of course. And, you know what I mean, she laid it out as, this is what they would do. This is how it would benefit, you know. You know the way that you have this problem today, well this might help it because of... And this kind of explanation that was both very kind of technically detailed, but suitable for an eight year old or whatever I was at the time.

Tommy:

And I remember kind of... And I've always kind of been this way, of tell me what I need to do, but like, I don't have mom's brain for kind of, this muscle's connected to this bone and if you rotate it 90 degrees or whatever.

Tommy:

And at the time, especially when I was eight, I was kind of like, just, Will this benefit me? If it, like in a year or two, will I be super glad that I had this surgery? And mom was like, unequivocally yes. And I was like, All right, good enough for me. Like, if it's passed mom's vetting process, then cool, let's do it.

Tommy:

And we went on to do that, before mom jumps in, we went out to do it. And I mean, Gillette is incredible, in the sense that you kind of feel like you're on this kind of conveyor belt and that sounds bad, but really is kind of very good because that's kind of so predictable, they've done this so many times. So they just know, okay, by day two up in the morning you'll be here, but by the afternoon you might start like this, that the other... Just happens like clockwork.

Tommy:

And I remember because it was Dr. Gage who did the first surgery. He came into the pre-op room, like right before I was going to go under, and he was kind of making sure that mom and dad didn't have any last minute questions. And then he asked me if I had any questions as well before, just like, kind of right before you're wheeled into the OR. And I said, Actually I do, I have a very important question. The nurse who did the intake said that kids who have this surgery get like a Teddy Bear after they come out. And it's just like, what color is that Teddy Bear? And to the extent that this was my most burning question, I think kind of shows that everything else was kind of so taken care of by both the surgeons and the nurses and kind of everyone who's involved in that process, kind of right back to mom, who kind of was so confident that this would be a benefit.

Rachel:

So I think it goes back to this point of creating this team, right? And Tommy, the fact that you were eight and already comfortable with that team around you and not scared, and feeling safe and all those different things, is really a testament to you, Lily, and the team that you created. And this is sort of, I'd like to ask this question for you. Because I think this is a question we get a lot and particularly from families. So actually everyone who's watching right now, please put your questions in the comment box.

Rachel:

But Lily, I've got this question for you. So as a mother, obviously first and foremost, obviously you are a mother, but how did you try to juggle those different things of being an advocate. Back then, having to do your own research, having to be potentially a therapist at times and all those different things. Like how did you manage that?

Lily:

Probably with huge difficulty. First and foremost, I was a mother. I never, ever would, thought of myself as a therapist. Like I thought, Okay, what I sort of felt I had to do was create the environment to let Tommy develop, you know what I mean? Like I knew the importance of like, I didn't know, I was told the importance of movement. The importance of say, like, so you have a child who has a problem with movement. Movement is even almost more important... Well, it's important for every child, but you know, getting this child moving. Like, say Tommy walked when he was three, but it took a huge input to achieve walking, you know? And just things like, you have a child who would... Tommy, movement wasn't, didn't come natural to him, but you just had to encourage it.

Lily:

And things like, I tried to create an environment around, he had two older brothers, they used to make games of lots of the exercises. So the physical therapist would give us a program, but a lot of that became sort of... You tried, like my husband was very supportive and he would be very involved in the program, but also the older children. And also we had babysitters, everybody sort of played a part, you know what I mean? Like bringing... We had a very good local playground and Tommy used to go to that a lot, but it didn't have to be me doing it all the time. You know, it was a team effort.

Lily:

And the only thing probably I would make sure that it happened, you know what I mean? But it didn't mean that I had to do every element of it, because you would just burn out. You just had to keep sight that it was all happening, because you still had three children to feed, you still had work to do. You still had... There was school, there was homework. So there was a lot going on. So you just, I suppose in a sense you just have to be organized. But as long as you sort of, I wasn't afraid to ask for help.

 

Rachel:

Yeah. No, I think that's really important, right? Like who is your support network and who are those people around you to help?

Lily:

Yeah.

Rachel:

And I think even all of us right now, it's probably even amplified even more, obviously during the year that we've all just had. Like, what does that look like?

Rachel:

And so Tommy, I'll ask you this next question, and because you've sort of told me a little bit. But you know, going back to the story of how you learned to swim. Because I think this is really important, right? So it's not just... I am a physical therapist, that's my background. You know, you didn't learn by a therapist, you didn't learn in a hospital. How did you learn to swim?

Tommy:

Yeah. So I learned to swim because my older brothers, John and Patrick, were tired of putting on the arm band float things. And so they kind of were like, Okay, we can either teach him to swim or we can keep having to do this like day in, day out. We were like on holiday in France or something. But yeah, they taught me how to swim that way, and there's always this older sibling problem where you're always someone's little brother and it can be the best PT intervention in the world, but it came out of a desire to just be a little bit more lazy. And I got to reap the benefit.

Rachel:

No, totally. But that goes to show, and the motivation that you probably had as a young child, wanting to do that. Because all right, my brothers told me to do it, so I'm going to do it. And I think that's where it's so important, creating this dynamic of yes, learning and elements of obviously motor development and what it is. But it is really a family dynamic, particularly as children are growing up and bringing everybody involved into that, to make it fun and enjoyable. And it shouldn't feel like a chore. So Lily...

Lily:

Or like therapy. A lot of it can be games, you know what I mean? A lot of it can be fun, and it's just getting sort of thinking out how to achieve that.

Rachel:

So Lily, you've now got to this stage, we'll say Tommy's at school and you're still in Ireland, everyone's still in Ireland at this stage. And going back and forth now, potentially for different surgeries and things like that. How did you manage the teams? So you would go, potentially have more specialized interventions and surgeries. Would you then go, when you went back to Ireland, have a local team that was supporting as well?

Lily:

Yeah. We had like, okay, so Tommy had SEMLS single-event, multilevel surgery when he was nine at Gillette. And then he developed very bad knee pain when he was 16, so he had further surgery when he was 16, which got... The knee pain disappeared overnight. And then a small surgery when he was 18. And this year, he can talk about himself, he had a SDR.

Lily:

But we were very lucky. Like we went to Gillette for his surgeries, but we would always come back and slot back into the team here in Ireland. And we did have the benefit of really supportive professionals here. Even though we supplemented what was available here in Ireland with going to Gillette, we still had very supportive... Like Carmel, the physical therapist who first introduced me to Gillette and Dr. Gage. As Tommy used to call, two Annes at the Central Remedial Clinic in Dublin, which would be our national treatment center. There were two Annes, a physical therapist and a gait lab person. They were very important in our lives.

Lily:

Mike Walsh the gait lab, the late Professor O'Brien in the gait lab. Central Remedial Clinic had a very good gait lab. Dr. Hensey, a pediatrician. So they would, we would come back to Ireland and slot back in. So a lot of the rehab was done in Ireland. But we would go, like if the treatments weren't available, we did go abroad for the treatments.

Rachel:

Because I think that's great advice to sort of give to families or give to people who are maybe exploring, but uncertain to go, Well, how am I going to get that continued support after the fact? If I go somewhere else, outside of where I live, to go get some specialized treatment, what's going to happen when I get home?

Rachel:

And I think it's really important to have that team back locally where you are and make sure that's there. But also if you've done the research and you've done these different things and you've found somewhere where you would like to go, having the confidence to go there. And I think, Lily, it's pretty remarkable, the research that you did at the time. To find out the information that you found, as I said, in an environment that isn't like today. It's very easy to get on today and to Google something and to find an answer quite quickly. But you know, to have the confidence. And I know not everyone said, Okay, yes, you're making the right decision. Like you did definitely, had people who potentially said you shouldn't be doing that.

Lily:

Yeah. Like it is funny because I reflected on that in the book as to where we got the confidence to go to Gillette for the first, particularly for the first surgery. And like I wrote in the book, like it was a logical explanation of the primary, secondary and tertiary problems in spastic diplegia, like that the primary are the neurological problems caused by the brain damage. The secondary are the growth problems, the problems that develop in muscles and bones and joints as a result of growth. And then the tertiary problems, which are the coping problems that develop to circumvent other primary or secondary problems. And like, it was just that logical explanation. It just made sense to me.

Lily:

And it was sort of, I quickly realized that surgery in cerebral palsy care, in CP care, you need surgeons, orthopedic surgeons who specialize in this, who are doing it day in, day out.

Lily:

We're all used to say, hearing about knee replacement surgery or hip replacement surgery and like, if any of us needed to have, if I needed to have a knee replacement, I'd be looking, who specializes in knee replacements? You know what I mean? And I would go to that orthopedic surgeon. In CP, when Tommy had his surgery, he had surgery at hips, knees and feet level. So we're not talking about a knee repla... Like a knee replacement is so simple by comparison with orthopedic surgery in CP. Because what the surgeon is trying to do is do all the corrections in a single operation. And it's multiple corrections. Like when Tommy had his SEMLS, he had 13 procedures, right. And having orthopedic surgeons who specialize in this, because it's complex surgery. And so I knew that Dr. Gage, Dr. Novacheck, and others, had specialized in CP care.

Lily:

And the other thing, and I suppose it's the science background in me, it's the bit of the scientist in me. That this surgery was supported by outcome studies. Like Tommy had the surgery in 2004. Even back in 2004, so we're talking about 16 years ago, even then, Gillette had published outcome studies on how, say, here's a group of 50 children. How did they, what were the outcomes like, say, two years after surgery?

Lily:

And I could read this paper showing... And it wasn't that, like this percentage of children improved on these measures, this percentage on this measure and this. And that spoke to me. And then the last thing, it was just, it was extraordinary care delivered with extraordinary... Like it was the attitude of humility, care and respect for children with CP, that I sort of observed at Gillette. And I found that extraordinary.

Rachel:

Yeah, no. And I think it's this idea of specialties, not for everything. Sometimes you can have more generalized care depending on...

Lily:

Absolutely.

Rachel:

I couldn't agree with you more actually, finding specialists in this area. And I think when, with anything that we do from the foundation and absolutely Gillette Children's Hospital is a phenomenal location. And Dr. Novacheck has supported obviously the CP resource and contributed to a lot of different things on there.

Rachel:

But Tommy, so we talk about this idea now of going, All right, this is specialized care. You mentioned before about feeling like you're on a conveyor belt. Do you remember the first time, and I'm sure you do, where kind of now you're on your own. And it's not you're on your own because you don't have a very supportive mother, but that moment when you're like, Okay, I'm now going to start taking responsibility for this. This is my life. And you know, what can I do about it?

Tommy:

Yeah. I mean, I think this happens in a bunch of small ways as you grow up. And so to be kind of taking charge of your CP care is kind of just another in a long line of things. Like when I would've gone off to college, there was so much that changed and there was no one enforcing a bedtime, there was no... You know what I mean? I was kind of completely responsible in what I got up to, for better or for worse.

Tommy:

And CP care, I think just came along with that, towards the end. And I found a PT at NYU, because I knew that without mom kind of nearby, I would need someone keeping me honest here, making sure that I was still doing all of the exercises and everything. And I guess proving kind of what a small world it is, that the PT that I had in Gillette... So I had a PT at NYU who I worked with, and the PT at Gillette had gone through NYU's I guess graduate PT program and knew him, and it's kind of a very, very small world in the end.

Rachel:

I feel like this world is a very small world though. We all know each other and it's, which is wonderful. Because it has this sense of community, for sure. But yeah.

Rachel:

So, all right, so you're sort of at school, were there any, I suppose this autonomy... Health autonomy, we talk about that sort of term a lot.

Tommy:

Totally.

Rachel:

And it's been mentioned that you've just had a surgery recently.

Tommy:

Yeah, that's what I was going to say next. Just on that surgery, I mean I kind of went back to Gillette for like a check-in or whatever, and didn't really expect a surgery to be kind of on the cards. I thought I was just kind of presenting myself just to check in and make sure that everything was kind of going as it was before.

Tommy:

And mom wasn't there because I was just, I took a day or two off work, and flew to Minneapolis. And when they floated the idea of surgery, I was like, Oh, I really wish mom was here either like on the phone or in Minneapolis, just because she's the one who has the kind of encyclopedic knowledge of how everything works and what this would be doing. And with mom's book, I had the benefit of where, as I think she said, I kind of left that appointment and I was like, Okay, we're considering it.

Tommy:

And I was like, What even is an SDR? And kind of went back to my email and [inaudible 00:30:38] had emailed me a draft of the book. And kind of just like, command F, just like select... And found the passage and read it, and had a clearer idea after that.

 

Tommy:

But yeah, I mean, as with kind of most things in life, there comes a point where the buck stops with you. And mom was good with that kind of gradual release of responsibility, that as I was a teenager, and I was 13 or 14, I had kind of slightly more control. And I think, yeah, as evidenced by the most recent surgery, that was really where it kind of was on display.

Rachel:

Yeah. No, and I think it's something that is so important. And something we hear a lot of is going, okay, so when is the right time? And obviously the right time's going to be very different to everyone. But it's being involved in your care from the very beginning and having that option to make choices.

Rachel:

And as you said, Tommy, even when you were eight, you were still making choices in a way. And your choice was you just wanted the Teddy Bear. But you know, like that there's still choices, right. And you're still part of the conversations and it was never, you were never not part of the conversations about what was going on.

Tommy:

Hundred percent, yeah.

Lily:

And actually, just when you say that, Rachel, it reminds me. Kerr Graham has written about that in terms of, particularly in adolescence, like to be honest, I think parenting is the only relationship where separation is a good outcome. You know, there's really, you have to be preparing for separation. It's not an overnight thing. You have to be kind of preparing for it all the way along, like there's childhood, in adolescence, you're definitely giving away sort of that the person has to take responsibility for their own healthcare.

Lily:

Because by the time they leave home, they have to be in charge. You know what I mean? So it's like passing on the baton gradually over a number of years definitely. But Kerr Graham wrote about it at one stage, that adolescents sort of, I think in children, but definitely adolescents, the decisions to have surgery, they must be... Like adolescent, children and... Very involved in that decision because you know, it can't be a parent. It has to be a parent and the child. And certainly, and the adolescent, you know what I mean?

Lily:

I think the child and then certainly the adolescent, they have to be very involved in their care and insofar as is possible to take it over. Like Tommy had surgery at 18, I wasn't even in America for it. His older brothers looked after him. So we were in Ireland, and we went on holidays. I knew he was in good care, but we, at 18 weren't even present at the surgery.

Rachel:

No, and I think that's really amazing. It's a testament to obviously, Tommy, your confidence in where you were at that stage of your life. And obviously the independence that you'd instilled in all your sons, Lily. And really that they, even your older brothers have the confidence to be there and to support you through that. But also knowing, okay, it's okay. He's going to be okay. You know, he [crosstalk 00:33:52] young, independent, incredibly intelligent young man, he's going to be okay in this situation. So it's really phenomenal.

Lily:

I can genuinely say I wasn't back in Ireland worrying, I really wasn't. Because I trusted the boys and I trusted the care at Gillette, you know what I mean? I wasn't worried and I didn't feel, now, okay, like the men in my life made this decision, that they were well able to look after it, you know what I mean? But I...

Tommy:

You were part of the decision as well, this wasn't a [inaudible 00:34:26] moment.

Lily:

No, no. But what I'm saying is that I was very comfortable not to be there, which is just... Anyway, you've talked about that.

Rachel:

And so Tommy, all right. So you've now done all these different things, you're at uni. Where do you think your love for writing and books and I suppose education came from? For those that don't know, actually Tommy, can you actually tell everyone, because I don't even think we said it at the beginning, like what you do now. I'm sorry, we didn't actually do a proper introduction to what you do.

Tommy:

No, not at all. I keep out of trouble, that's the long and short of it. No, so I, work in communication and business strategy at a startup called Lambda School, which is essentially an online job training and technical education program. So the students learn from technical instructors, they learn how to program and then we help them get jobs afterwards. And so it's essentially kind of a retraining program for folks who want to break into tech.

Tommy:

And yeah, I mean, like mom and dad were always super interested in education. And so I think it was something that was kind of super important. They were big readers when we were growing up. And since we grew up in the middle of nowhere, it wasn't as if you could kind of come home from school and then like go outside and like play with your neighbors or your friends, because we didn't really have neighbors. And so we were all very kind of self-directed learners and kind of just developed interests. And I mean, John Patrick, my little brother, went into computer programming very, very early. I came to it kind of late.

Tommy:

But I was always interested in kind of reading and writing. And I would, on the Windows '97 computer at home, be writing kind of like stories in Microsoft Word or whatever. Kind of fast forward, when I was in high school, I wrote a good bit. Started journalism in college. And I think part of it is just kind of the right place at the right time that I happened to know someone starting an education startup in 2017, 2018.

Tommy:

But I do think kind of this idea of expanding opportunity to people and taking advantage of the internet, as it were, to kind of connect people, connect really good instructors and really good job trainers with people who wanted to learn technical skills or help get a new job. I think it's kind of really exciting and really fascinating.

Tommy:

And I mean we had a student go through Lambda School who graduated a couple months ago and got a job, and they're legally blind and they are now working as a professional software engineer. So I guess from that perspective, it is exciting in the sense that it's not just an education company or a job training program, that this does allow people with disabilities to have opportunities they may not otherwise have. To give them another option that isn't just going into school every day. And there's an extent to which kind of increasing student choice and just giving people more options is one of the really exciting parts.

Rachel:

... accessibility and the diversity that you're going to have. You know, it's good for business too. When we look at it this way, the opportunities that you get, you're getting people who are coming from different perspectives. And for those that don't know, Lambda is, as Tommy said, a completely online environment, which right now I feel like everyone's going online. So you are definitely ahead of the game, without a doubt.

Rachel:

But the model is also very inclusive for lots of people from very diverse backgrounds. You know, it's a place where accessibility is at the forefront of what you're doing. And I think that's sort of really extraordinary.

Rachel:

But so, Lily, we'll go back. So Tommy's the journalist, he's written some really incredible things. So actually the first time I heard about Tommy's story was, I was Googling incessantly when we were trying to develop CP Resource, to try and find contributors to CP Resource.

Rachel:

And I came across actually the essays that Tommy had written about growing up with cerebral palsy. And I was like, Oh my gosh, I've got to reach out and meet this person. And, but Lily, but now you're the author. So how's that, that it's sort of come full circle, that it's this sort of incredible piece, that you've gone through all these different things and now you're the author. It's like you're learning from Tommy. It's like, it's completely reversed.

Lily:

It is, actually. I think when like, I would say the fact of Tommy's interest in journalism did influence me. Like, put it this way. When I wrote the book, I wrote the book for the mother I was back then. And the book is not just for mothers of children, it's for... Sorry. It explains spastic diplegia across the lifespan and its management across the lifespan.

Lily:

So it was for the mother of a child, but also for the adolescent and the adult. So that I can give this book to Tommy, this is spastic diplegia in adulthood. Because I was very interested in the condition. It's a lifelong condition, so the condition across the lifespan. But definitely Tommy influenced me. It's like the saying, what is it, Tommy, insanity is hereditary, you get it from your children.

Lily:

So writing is hereditary, that I obviously got it from my children, Tommy's interest in writing. And he would certainly have been super encouraging. Like when I sort of talk, like I had always said, This is the book I wanted when I got the diagnosis. But I always said there needs to be a book by diagnosis. You know what I mean? And he certainly was very, was super encouraging to me writing it, you know what I mean? And it was kind of nice because he would've read drafts and that, so it was lovely for him to be involved while I was writing it. As well as sort of... But definitely he had an influence on me.

Rachel:

Yeah, no, I just think it's really quite remarkable when you look at, obviously your relationship and the family dynamics that you have. It's really commendable, it's really wonderful to be talking to both of you actually. Like I think it's just, you've got so much to offer and obviously your dedication to education and having people understand bilateral spasticity and cerebral palsy, and what that is and how that really impacts life. But more importantly, how you can feel empowered to change.

Rachel:

And so there is a couple of questions that have come through, so I do want to sort of acknowledge those. So Kyle is just sort of letting us know, So I was nine years old with CP and my family moved from Dublin, Ireland to Boston back in the day. And he's now in Orlando. So he just wanted to do a shout out that he's listening today.

Rachel:

But we've also got another comment here and I think, Lily, you and I have touched base on this before as well. It's about, this comment is actually about, Okay, we need to find a cure and do these different things. But to more importantly, I think it goes to thinking about, we need to be on the forefront of medical science and making sure that people understand what is available to them and how to keep pushing that forward. But can you sort of give your comments on that a little bit?

Lily:

Yeah, absolutely. Like what I wanted to do in the book was that this is where medical science is at in the management of spastic diplegia. Right? So this is the limits of... I wanted, like Tommy obviously had a brain injury and there's no cure at the moment. Hopefully that... You know, that... Some more... But there is no cure at the moment. But I wanted his management, the management of his condition to be at the limits of medical science, not postal code, not where we lived.

Lily:

I wanted, whatever were the best treatments, I wanted to try to make sure that we could avail of them. But in a sense, I didn't know what I didn't know, right? And that's why I wanted to write a book, because both... I wanted to empower other families that this is where the management is at. But also the importance of research, because this is where medical science is now, let's keep pushing medical science. Because it's not static, you know what I mean? This is the best management. Like these are the evidence-based best practice treatments at the moment, but let's continue the research and let's hopefully keep upping the bar, you know?

Lily:

So that's why, I just wanted to be at the limits of medical science and to keep the pre... I want to keep the pressure on all our services. People with CP deserve good treatment, they deserve... So I want people to have the information, that as of now, these are the best treatments. And so that we can lobby our services to provide these treatments. You know, I think that's important. So like, I didn't know, when Tommy was newly diagnosed, I didn't understand the condition or its management. This is what I've put in the book. And that's what I want people to know, so that we can all help to improve services for people with CP, because people with CP deserve it.

Rachel:

Yeah. No, I think it's a absolutely really important thing to reiterate is it's going, okay, yes, there isn't a quote unquote cure, but there is so much that can be done. There's so many wonderful things that can be done. And I think it goes even beyond healthcare. And obviously the book is really focused on healthcare, which is really important. So I think there's so many different elements of people's lives.

Rachel:

But even Tommy, the work that you are doing right now, the expansion of getting people to think, okay, outside of the box, when it comes to employment, when it comes to learning and education. All those things are so important, because we can all move the needle forward. And it can really, I think it's extraordinary, what's going to potentially happen in the next five years. But just a sort of a final question for both of you, I suppose. What's next?

Lily:

You go, Tommy.

Tommy:

I mean, I think there's kind of two ways of answering this. In the sense of what's next for Tommy, with CP. And I think that when I finished growing, I remember talking to a doctor who was saying, Really, management of CP in adulthood looks a lot like making sure that you stay flexible, making sure that you stay in shape and strong and go for walks and workout and do all that stuff, and stay healthy.

Tommy:

And there's an extent to which that's kind of what all of us need, you know what I mean? That's no different to what John and Patrick need to do, as like to stay healthy adults. And so there's something kind of exciting about being an adult with CP where, when you're growing, everything changes every which way. And when you grow, it's kind of hard to predict how things are going to lie and how things are going to look like.

Tommy:

But once you're grown, this sort of becomes it. And maybe I'm lucky, that they find a cure or a great new treatment or whatever. But for now, for the kind of immediate foreseeable future, there's kind of maintenance to do, but not a lot else going on. So that's kind of exciting there.

Tommy:

And I mean, outside of it, apart from existing in a global pandemic, Lambda School, I hope is going to go from strength to strength, kind of launching new initiatives. We are eyeing up different curriculums in the sense of right now, it's just for coding, but there's no reason I think that it couldn't be for other tracks as well, for other things to study.

Rachel:

I think that's the amazing thing about Lambda, right? It's a model of success of seeing what can be done, sure in tech and being software engineers, but that model could be taken into lots of different fields. And I think that's really exciting.

Tommy:

Totally.

Rachel:

Lily, what's next for you?

Lily:

I suppose, I'm very interested in the whole area of education. I'm very... In education of people with lifelong conditions, in the whole education space. Like I suppose my background had always been in education, so just that's an area I've always been interested in. But in research and like all the proceeds of the book go to research. I was interested in writing this book, and obviously I wrote it with the team at Gillette, but all the proceeds go to research. I suppose, it's those two areas, in education and research, that I'm particularly interested in. So that's where I'll be putting in a little bit more effort.

Rachel:

Yeah, no, absolutely. And I think we are so thankful, actually, for your effort and for both of you. And for those watching, Lily has offered so generously to do a book giveaway. So we'll be doing that on our page in the next couple of days. So look out for it, because it is really a remarkable, I suppose, learning tool for families, which was your purpose and your goal of writing this book to begin with. But I just want to say thank you again to both of you. And yeah, it's really been wonderful chatting with you both.

Lily:

Thank you, Rachel.

Rachel:

Thank you.

Tommy:

Yeah.