Curiosity drives creativity in this heartfelt conversation with author Mila Maxwell, whose debut novel "Finding Lady Baltimore" emerged from a simple yet profound question: "What if something happened to me that allowed me to see her perspective?" This burning desire to understand her sister Sarah's experience with cerebral palsy ultimately became the foundation for a work of fiction that blends real-life experiences with imaginative exploration.
Maxwell's journey from caregiver sibling to storyteller reveals the complex dynamics of growing up alongside someone with different abilities. Just 18 months older than Sarah, she naturally fell into a protective role that shaped her identity well into adulthood. Home videos captured young Mila directing her sister during bath time—early evidence of the responsibility she carried throughout her life. This pattern became so ingrained that when Maxwell became a mother herself, she had to consciously adapt her approach for her neurotypical son.
What makes this conversation particularly valuable is Maxwell's candid acknowledgment of the complicated emotions that accompany being a sibling caregiver. Rather than presenting an idealized version of her experience, she addresses the resentments and unspoken feelings that accumulated over years. Through writing, Maxwell found healing not just for herself but for her entire family. "It's changed the whole family dynamic with my sister and my parents," she shares, highlighting how bringing these feelings into the light created opportunities for greater understanding.
Beyond her writing, Maxwell embodies versatility as a self-described "multifaceted serial entrepreneur" whose career has spanned marketing, nutrition, personal training, and even volunteer firefighting. Her approach to life mirrors her creative process—organic, intuitive, and guided by what feels right in the moment rather than rigid planning.
The most powerful takeaway from our discussion lies in Maxwell's emphasis on individuality: "Everyone that has a disability, they're still an individual," she notes, explaining that even people with the same diagnosis can have vastly different needs and personalities. This understanding extends to her philosophy that "we all have special needs"—a perspective that shifts the conversation from categorization to celebrating universal human diversity.
Have you read "Finding Lady Baltimore" or connected with the sibling caregiver experience? Share your thoughts and join the conversation about how stories like these help normalize what it means to be part of a special needs family.
Episode Transcript
The SJ Child Show is Backford's 13th season.
Join Sarah Bradford and the SJChild Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
Go to sjchildsorg to donate andto get more information.
(00:25):
Congratulations on 2024's20,000 downloads and 300
episodes.
Speaker 2 (00:33):
Good morning afternoon.
Whenever you're tuning in, yeahwell, there's the intro I was
telling you about.
And then, instead of going back, I just hit record and stuff.
Here we are.
Oh my heaven, is that the waythat today's going to go?
And instead of going back, Ijust hit record and stuff.
Here we are.
Oh my heaven, is that the waythat today is going to go?
It's just going to be likefumbling into one thing after
the next We'll roll with it.
(00:55):
I know right, we will.
We will.
So nice to have you here today.
Is it pronounced Mila?
Yeah?
Speaker 1 (01:00):
I don't, it is.
Speaker 2 (01:06):
Okay, good, mila, it's so nice to meet you and
have you here, our neighbor fromthe north.
You are in Canada.
I'm down here in Salt Lake City, utah, so why not?
I mean, what side of Canada areyou on?
Actually, I should ask.
Speaker 3 (01:17):
I'm in.
I'm on very east maritime, sowe're kind of in between three
major cities.
We're in between St John,moncton and Fredericton New.
Speaker 2 (01:27):
Brunswick.
Oh wow, that's amazing, and itlooks like you're having a
pretty nice day.
The sun is out.
The sun is out Like.
Luckily, the clouds are kind ofout today.
Oh man, oh, it's so nice tohave you here today.
Speaker 3 (01:44):
No, we've had a great summer so far.
Speaker 2 (01:46):
Oh good, I'm so glad.
Yeah, it's actually been alittle extra hot here up in.
It's supposed to be 99 today,which I'm not sure how to
calculate that into Celsius.
Maybe, like what, is it 40?
Speaker 3 (02:03):
I'll look it up.
Yeah, 99.
Yeah, 40 something.
I'll look it up.
Yeah, it is 30.
Oh, my goodness, 37.2 celsius.
So that's like, there you go.
Speaker 2 (02:16):
Yeah, that's hot yeah , exactly, exactly, it's the I.
I only know because my sonloves the thermometer in Celsius
.
You know, sometimes we getthese kids that like things
differently than they teach usthings the whole way through our
lives.
Oh, exciting, it's so nice tohave you here today.
(02:36):
Before we get started, tell usa little bit about yourself,
introduce yourself and tell uswhat brought you here today.
Speaker 3 (02:44):
Well, I grew up on the East Coast.
I just turned 40.
Happy birthday.
You don't look it.
Yes, thank you, it's that seaair, it's the coastal air.
Yeah, I live in Sussex, newBrunswick, canada, with my son,
husband and two French bulldogs.
We have an 11-week-old puppywho is currently on the side
(03:06):
table next to the couch, so I'mjust going to see what she does.
But yeah, it's been a busy fewyears.
Our son's 11.
He's into the baseball thissummer, so that's been busy.
A couple pups and yeah, it'sbeen good.
Speaker 2 (03:23):
That's wonderful.
Well, I am turn.
I turned 49 just a couple ofweeks ago.
So, same thing.
It's like a new era ofeverything Right.
And um, yeah, it's so excitingwhen we and puppies are so much
fun.
We, I've had a puppy era and uh, yeah, era.
(03:51):
And uh, yeah, it's a good thing, it's in such a great
experience.
And, um, you know how are youraising your family and the
animals?
And tell us about you know kindof your business and things
that you're working on.
And, yeah, we'll dive deeperthan okay well um, it's, yeah,
(04:11):
it's I.
Speaker 3 (04:12):
I wasn't one to really follow a traditional
career path, uh, honestly.
So I've been on the workforcefor just about 20 years and I
worked in marketing when I firstgraduated from university
graphic design, that sort ofdeal for five or six years.
Then I ended up buying, kind ofout of the blue, a nutrition
business.
(04:32):
So I was a nutritionist andnaturopath for eight years.
So the marketing and thegraphic design and the
journalism which is what I tookin school, that became very
helpful for that career stint.
I guess I did personal trainingwithin that and since then I've
(04:52):
become a volunteer firefighter.
I recently published my firstnovel in April, and I co-own a
functional fitness gym.
Speaker 2 (05:03):
Oh, my heavens, you are the Jane of all things.
That's what I tell people thatall of the careers that I think
I've lived like a hundred livesor something it sounds like
you've done the sameMultifashionate Serial
entrepreneur.
That's what I called it.
Speaker 3 (05:24):
I love it, oh my heaven, it my God, it's a lot.
It's a lot sometimes, but it isfun.
Speaker 2 (05:28):
No, that's, that's really wonderful, and it sounds
like you really um, you know,thrive just really moving
forward and being passionateabout those types of things.
I love that so much.
Tell me about your book, yournovel.
Speaker 3 (05:47):
So it's called Finding Lady Baltimore and it
just came out in April.
So I had been working on thatfor the past three years and
what?
It wasn't something that I waslike, oh, in the summer of 2022,
I'm gonna write, start writinga book.
It was just something thatreally came about organically as
I was going to bed one nightand I grew up with a sister that
(06:09):
has cerebral palsy.
So that was, I think, the maininspiration behind the book a
lot of the feelings that hadcome about from growing up
alongside of Sarah, just thingsthat I had seen, things that
that I felt, maybe things Ihadn't shared growing up.
So, yeah, it just came aboutone night and it was basically a
(06:29):
sentence that came to me and itsaid along the lines of what,
if something happened to me thatallowed me to see her
perspective, because I've alwayswondered what goes on in her
head, what she deals with, butshe, because she can't always
explain herself, she can'talways.
(06:50):
She has a hard time processingand she has a hard time
explaining what's going on.
So, cognitively, I alwayswonder, you know, what's what's
going on in her head, like, whatis she?
How is she dealing with this?
How is she?
What does she think about thissituation?
Does she feel things the way Ifeel them?
So, yeah, I originally startedwriting a memoir and I was like,
(07:11):
no, this is.
It feels too personal, it's notfun, and I'm not discrediting,
discrediting anyone that'swritten a memoir, it was just,
it was not for me.
So I chose to write fiction,base it on my life, which a lot
of the things that happen in thebook are true, but it allowed
me to process some things withina little layer, like a layer of
(07:34):
okay, if this is too raw or ifthis feels too personal, I can
use my imagination and still usethat event or that situation or
scenario.
But I can, I can be morecreative with it.
Um, and it it became verycrucial when it what came to
(07:55):
Sarah's character, because sheis not able to, you know, I
could ask her hey, what does itfeel like walking with crutches?
That's fine.
What does it feel like when youknow you first wake up in the
morning?
Are you stiff?
Yeah, maybe, like it's not, youwould get those sorts of
answers.
Um, so, yeah, I really wantedto do my best and give her, give
(08:20):
her that voice that maybe shedoesn't always have, and I did
it through a fictionalizedcharacter as much as much as I
could, but I think I did areally good job at Sharing what
she thinks and goes through.
Speaker 2 (08:38):
And what was her response in the book?
Speaker 3 (08:43):
She, I don't so someone that she lives with.
She lives in a in a group homewith a few other people that
have similar needs.
They've been reading it to her.
So it was sort of funny becausebefore the book came out,
people from back home in novascotia would say, hey, like we
heard mila wrote a book,what's's it about?
And she would go me.
Speaker 2 (09:08):
I love that.
That was cute.
I'm just going to let the dogsout so they don't know.
Yeah, yeah, 100%.
You know, our lives happen,whether we're podcasting or not,
and I think that's somethingthat maybe the pandemic allowed
everyone to embrace and see alittle bit more, that it doesn't
(09:28):
have to be this perfect, youknow, edited everything.
It's like life.
This is life, and especiallywith families like ours that we
support on a 24 seven basis,support on a 24-7 basis, and
(09:50):
it's so interesting.
I really love that.
You were curious, because Ithink curiosity is like the
breadth of creativity and Ithink it really helps to embody
the ideas that you're havingwhen you use that curiosity.
And I think it's lovely to hearfrom a sibling because I'm an
(10:14):
only the how lovely it is toalways siblings are always the
same and I I mean I hate togeneralize, but it's just this
(10:36):
special relationship that Idon't think anyone else could
understand.
So let me personally and justbeing able to watch it makes me
so grateful to be able to seethat that is the kind of
experience that both of them arehaving.
And so what, growing up, whatwas that?
(10:59):
Your younger or older sister?
Yeah, we are 18 months apart andI'm the oldest so there was
this air of caregiving youalready had, I'm assuming yeah,
(11:21):
and it's funny because we havesome home videos.
Speaker 3 (11:24):
I haven't watched them now in years, but I
remember her being in the tuband she would have been maybe
two years old, so I would havebeen close to four and she was
on her knees in the tub and shewas, you know, biting the,
biting the face cloth andplaying with her toys and me
being like Sarah, like put your,put your hands back in the
water, like always.
That air of responsibility thatI don't think I ever got rid of,
(11:46):
and it was something when Ibecame a mother myself.
I had to I don't want to sayunlearn, I just had to refocus a
bit and say to myself I have a,I have a neurotypical child.
He is able to tell me thesethings and I mean, obviously,
when he was very young it wasdifferent, but as he grew older
(12:07):
he's almost 11, he'll be 11 in afew days Um, yeah, he, I had to
kind of say like he needs tolearn to come to me.
I can't always be managing him,I can't always be monitoring
what he might need, because it'sexhausting.
I don't have to do that withhim.
Speaker 2 (12:23):
Yeah, isn't that the truth?
And when you, I see that youknow we're.
She is two years older.
Excuse me, she's two yearsyounger and so it's.
It's the opposite, in fact.
Give me.
Give me one second, mila, sosorry.
Speaker 1 (12:40):
The SJ Child Show is back for its 13th season.
Join Sarah Bradford and the SJChild Show show team as they
explore the world of autism andshare stories of hope and
inspiration.
This season we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
(13:00):
Go to sjchildsorg to donate andto get more information.
Congratulations on 2024's20,000 downloads and 300
episodes.
Speaker 2 (13:14):
Well, that's hilarious.
I guess we'll have a little bitof editing to do after all.
I didn't know that was going tohappen.
I know that's going to happen.
What a learning curve we're ontoday, my dear.
Oh heavens.
This is just funny, okay, well,anyways, I was.
I was saying, um, yeah, the twoyear difference, it's, it's so
(13:39):
beautiful.
And to see this, uh, my son wasnon-speaking and his little
sister was a hyperlexic and wasspeaking full sentences as soon
as she could walk and he, youknow she would do his speaking
for him.
Okay, come on, dj, now what doyou need?
And let me get this for you.
(13:59):
And so it was quite theopposite in that, and they're
both autistic.
Just very, very different,obviously, and just so sweet,
though, to see the care and thecaregiver in her already as just
a little person.
So I just love that.
Speaker 3 (14:21):
Do you think that if they would have been born in
different orders, that it wouldhave been the same?
Speaker 2 (14:30):
have been born in different orders, that it would
have been the same.
I think, because of who she is,just as a person, I and maybe,
maybe, if the you know what shewould have been a different sign
, but that Capricorn in hershe's just like sturdy and, you
know, very passionate anddedicated, loyal, so, yeah, just
really lucky.
(14:50):
She's a wonderful, wonderfulpart of our family.
Yeah, so when you were growingup, what type of support did
Sarah need?
And did you continue?
(15:10):
Did you kind of add thosepieces into the novel?
Speaker 3 (15:15):
Right.
So when she was born, myparents weren't really sure what
had happened.
So she basically stoppedbreathing shortly after birth
and they figured she stoppedbreathing long enough that it
created an oxygen deficiency inher brain.
So they are thinking that'swhat caused the cerebral palsy
whether it was in utero and theyjust didn't know.
(15:35):
Who knows.
But she was rushed to adifferent hospital three hours
away and I think she was about ayear old, maybe even a little
over a year, when they found outwhat it was, maybe even a
little over a year when theyfound out what it was.
So, yeah, she had a lot ofphysio appointments, a lot of
speech physio.
She had a lot of surgeries not alot, but she had a few
(15:59):
significant surgeries before shewas four or five Things like
she had to have her hamstringscut to make them longer and just
because when you have cerebralpalsy your muscles can become so
tight that it really affectsyour posture as you're growing.
(16:28):
So, yeah, I really made sure toinclude all of these things in
the book so that people couldsee what she went through, what
my parents went through, what Iwitnessed growing up, yeah, and
then growing, going to the sameschool.
She was in the same classes asme.
We were two years different butshe, yeah, she had an
educational assistant, so shewas basically alongside of me
throughout until high school andthen high school school.
We were in the same school butshe was in a special class for
(16:50):
for students that had a fewextra needs that they might not
have been able to keep up in aregular, in a regular classroom
(17:11):
with her in that, in that way,and now that you've married and
have children is, is hercognitive ability like her a bit
kind of is she happy for you orkid does, is that?
Speaker 2 (17:18):
does she have that ability?
My son is kind of on the walks,that line of I'm not quite sure
if he can like think of othersthat way, right, Sarah for sure
does, and that was something Ialways struggled with and I even
.
Speaker 3 (17:33):
I've told the story so many times in the last few
months.
But I remember on Jeremy andtoday.
But I'm also a little sad.
You know she's never gonna getto experience any of this.
She's never gonna, you know,fall in love and get engaged and
plan a wedding, and mom's like,she doesn't think that way, she
(18:03):
just, she's just so happy foryou, she doesn't compare herself
to you, she doesn't think shecan do that.
And I can't do this, likethere's never been any of that,
it's just been.
I love my sister and I want tosee what she's going to do next
and I'll cheer her on atwhatever it ends up being.
Speaker 2 (18:22):
I love that.
That's so beautiful.
Um, and do you see a sequel tothe book or anything?
Did you leave room for that?
Speaker 3 (18:34):
I would love to.
I've been asked that a lot.
I would love to write again.
I just don't know what it wouldbe about.
It would either be maybe aprequel or, yeah, a series of
some sort.
I haven't had a chance,honestly, to give it much
thought because since the booklaunched I've been so busy with
events and speaking engagementsand podcasts and book sign-ins.
(18:57):
But, yeah, it's something Ireally, really enjoyed.
It was a very, very healingexperience to be able to share
not only my story but hers andmy parents and I feel like as a
family it's brought us closertogether.
A lot of those resentments andthose just things that I had
(19:18):
never really spoken because Ifelt guilty, those were kind of
out in the open and they wereactually accepted very well.
So, yeah, it's changed thewhole family dynamic with my
sister and my parents.
Speaker 2 (19:31):
You know there's something to be said about
shining the light even in thedark places, because it really
is illuminating and can helpeveryone heal in a situation
where that's been covered up ortheir own feelings have been
covered or anything, and thatchance to kind of reconcile and
(19:54):
be honest with yourself aboutthose things.
I mean that's like a lesson, apriceless life lesson gift that
you offered to everyone in thatsituation.
So wonderful on you, miss Mila,absolutely.
Oh, my gosh, what about?
You said that you're working ata functional gym or something.
(20:19):
Tell us about that, what thatlooks like and what kind of work
you do there.
Speaker 3 (20:24):
That's pretty laid back actually.
So it was just a gym that I hadbeen going to.
It was CrossFit based, but theyclosed down last summer and a
few of us members got togetherand bought some of their
equipment and we're renting adifferent space.
So it's not like we market it,we advertise it, but it was more
(20:45):
to keep that community togetherso that people that are looking
to do that sort of training canhave a space to do so.
But people that are looking todo that sort of training can
have a space to do so.
So, yeah, it's not like it'sit's busy and that I have to
cover a few classes and do somemarketing, but it's not like
it's certainly not a full timegig by any means.
It's just kind of a hobby, apastime, a little passion
(21:06):
project Nice.
Speaker 2 (21:08):
I love that I got to keep myself busy with those two
is, I can agree, agree, um, whatis next?
What's um?
What do you see in the futurecoming up, and where can our
viewers and listeners go to findout more about the book and
order it and get their hands onit for themselves?
Speaker 3 (21:32):
Well, the book's on all Amazon platforms, whether
you're in Canada, us, wherever.
So, yeah, it's available onAmazon.
And I'm on social media.
I'm on both Facebook andInstagram.
Haven't dove into TikTok yet,I'm a little nervous about that.
But yeah, I just looked up MilaMaxwell, author and I'll show
(21:53):
up.
But with regards to what's next, I'm not like, I'm not a huge
planner.
I'm kind of just like, oh, thisfeels right right now.
So I'm going to, I'm going totry it.
It's, yeah, and I noticed myit's.
I can hear an echo.
I hope you won't hear that onyour podcast, is that?
(22:14):
Can you hear that?
Speaker 2 (22:17):
It's okay.
Speaker 3 (22:23):
I, you know, usually the the editor makes, makes
things better, the AI editor.
Speaker 2 (22:27):
Yeah, no problem at all.
No, I'm thank you so much forbeing here today and sharing
your story and for reallysupporting such a part of a
family that maybe could get lostand unlooked at and maybe other
(22:47):
people could leave not feelingso great in their lives, and so
hopefully this will helpeveryone to really embrace what
it's like to have a specialneeds family, what it's like to
have a family with a disability,with support needs, and really
(23:09):
those family members that justyou know, it isn't irregular for
them, it's normal, it's theirlife, and I think that that's
something that is a beautifulthing to look at and to
recognize that you know, whenpeople are probably say oh you
know, that's you're just sowonderful for doing and, yes,
(23:32):
you're wonderful for writing abook about it, but living your
life like that was justsomething you were doing, and I
think that normalizing what thatlooks like in just everyday
life for people is so beautiful.
So, yeah, thank you so much forthe work you're doing.
Speaker 3 (23:52):
Thank you, yeah, and it wasn't.
You know, it wasn't always easy, and I think people can can
forget that, that they think, oh, you know, mila grew up with a
sibling that has cerebral palsy,so she gets it, and it's like,
yeah, I get it, but it doesn'tmean that I, you know, I had to
learn some things about it too.
Right, it wasn't just likeeveryone, everyone that has a
(24:22):
disability, they're still anindividual.
So you could have five peoplewith cerebral palsy, but they
have very different needs.
One might be verbal, one mightnot be, one might be able to
walk without assistance and theother one might not be able to.
So it's, it's the same.
Goes for anyone like you can'tgeneralize and you can't, you
know, you can't place anyone ina, in a category.
I guess it's like, yeah, that'stheir diagnosis, but everyone
(24:45):
is their own person and they,they have specific needs.
And that goes for people thatare neurodivergent too.
We all have, we all havespecial needs.
Um, I like to say that a lot,it's just like have, we all have
special needs.
I like to say that a lot, it'sjust like it's.
We all have different needs anddifferent things that you know
make us tick or that we'repassionate about.
So, yeah, it's just, it's justembracing individuality.
(25:05):
I think it's a big, a biglearning curve with this book.
Speaker 2 (25:09):
Yeah, I love that and I think that our really we are
in an era and a time where it ismore generalized, more
normalized and less stigmatizedthan ever before, and I'm so
grateful for that.
So let's keep on working thegood work and putting the right
(25:31):
ideas and presentations outthere for everyone, especially
those who may not be able toshare their representation, but
they certainly deserve a seat atthe table.
So thank you so much for beinghere today.
Speaker 3 (25:50):
Thank you so much for having me.
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