Welcome to Unlimited Parenting, where we discuss having children with disabilities or special
health care needs.
I'm Allison, and this is not your normal episode.
Today I am so excited to be joined by author Kelly Coleman, and we are going to be discussing
her new book, Everything No One Tells You About Parenting a Disabled Child.
If you've ever longed to feel seen as a parent of a child with a disability, this is your
book.
If you've ever wanted an all-encompassing resource with tips from school to community-based
resources, healthcare, financial planning, this book is for you.
So without further ado, let's get into the stuff and the things.
That really makes me feel special.
Yeah, but here's the thing, not even like, oh, that's special, but like, it is actually
useful.
And there's so much out there that makes me feel like, okay, I feel better.
I'm in community with people.
And that mental health piece is so hugely important.
And there are so many resources and podcasts out there with these parents who are having
these great and important conversations.
And so often I find the piece that is missing, which is what I address in the book, but also
what you're addressing every time on the podcast is, but how do I actually do that?
How do I actually do things?
And I found for myself for so many years, I was like in my bottomless pit all by myself
and didn't know what I was doing.
And then I connected with other parents and that piece came into place.
And then I realized, wait, but I'm reinventing the wheel and figuring everything out from
scratch on my own.
And it wasn't until last, and my son who's disabled is 10, it literally wasn't until
last year that someone, Judy Heumann actually told me that there is a parent training and
information center in every state.
And I was like, wait, wait, hold up.
My kid is 10 years old.
Where were you 10 years ago?
And I'm writing a book and you're the first person to tell me that?
It's like, how is that not the first thing out of someone's mouth?
Your kid is disabled and there's this resource in every state.
I just want you to know that I so appreciate hearing you say that because it's very much
a struggle that not just the parent center in Idaho, Idaho Parents Unlimited, but every
parent center across the nation is really struggling with how am I, what am I not doing
to reach these parents earlier, to reach these kids earlier?
We even on our website we've created, Now What Guides, now you have a diagnosis, what
do you do now, which is essentially your book, right?
So I'm just, we are also very much at a loss.
Like, how are we not getting these people?
Yeah.
Well, and I'm working hard with my book to connect to, of course, the parents, but also
anyone who is either delivering a diagnosis or delivering news that we need to start an
evaluation or considerations because as you know, things are delivered so sloppily and
it's such, it's like starting parents out with, I'm sorry, this is the worst news ever
before most of us have even had a chance to fall in love with the person our child actually
is.
And like my kids, I have two kids, they're both awesome.
But it's like, I'm being told what a tragedy this is with no context, no knowledge of disability.
And I'm like, okay, I'm coming at this from ignorance.
And you're telling me this is tragic and good luck.
And I'm like, what are we doing?
Yeah, what, whatever happened to having high expectations when you don't know what to expect,
right?
Yeah.
And that is just like, we're told basically to have no expectations, not just for our
child, but also for ourselves and our future because like for me and for my husband, like,
we realized and knew very early on that it looks like we are going to be parent caregivers
for the rest of our lives.
It will be a full time job for forever.
Our son who again is amazing, is not ever going to be able to live independently.
One of them will hopefully he'll be rich and support us all, but we'll work on that.
I'm like, no pressure, dude, but I'd like to retire at some point.
No pressure, but step up.
Yeah, come on, you're 12.
We need to we need some real life skills here.
Practicing the Tuva is not going to get us there.
Exactly.
It's awesome because Tuva sound like farts.
But yeah, so it's like we're being launched into this forever full time role for the rest
of our lives that we also need to plan for for when we die, because that will definitely
happen at some point.
And there's no like, oh, and here's the net we're going to catch and teach you how to
do all these things.
It's like, OK, spend a decade and then you'll kind of get a foundation and then good luck.
Yeah, what are we doing to parent caregivers?
We're like, we're making this so much harder than it needs to be.
And again, back to your podcast in your organization and to parent training and information centers
in every state.
If every practitioner knew to just send parents towards these centers, we would all be better
off including that clinician delivering a diagnosis, because I've talked to so many
medical professionals and educators and evaluators who deliver these diagnoses and it sucks.
Yeah, they're being told the same messages that we're being told, or there's no education
of how to deliver these things.
And so you're just assuming this is the tragedy that is befalling the family and you're giving
them news of tragedy.
And there can be tragedy.
There are certainly medical things that are real tragic.
Like if I could get rid of my son's epilepsy, boy, I sure would.
But he's not tragic.
He's awesome and he loves airplanes and swimming and he has great hair and he's loving life.
I also think that there's also the flip side to that conversation of where the practitioner
delivers a diagnosis and it's just another day for them or it's the fifth one they've
given that day and they make it seem so banal and benign.
And then all of a sudden you're sitting there and you're like, I don't what just happened.
Yeah.
My life is so different now, my family dynamic.
And then I also always, when I always try to echo to parents, your life is still the
same as it was five minutes before you got that diagnosis, right?
But there's always that grieving process.
Did you go through that too?
Oh my gosh.
So what's interesting is it's like your life is both exactly the same and 100% different.
And the gap in between that for me was the grieving process because I was like, okay,
it's totally the same.
No, it's not totally the same.
My kid still eats, but now he has a feeding tube, like all of these things.
And I again was coming at disability from what I now realize was ignorance and my own
ableism because I had grown up being taught, don't stare, don't look, pretend like that
disabled person isn't there, which is terrible.
Right.
Anyone, especially not my own kids to walk through life with people being like, oh, I
don't see you.
Just kidding.
No.
And the grieving process for me only recently in the last year or two, did someone put a
word to exactly how I was feeling that like threw me to the bottom of that bottomless
pit.
Because there is a bottom.
And the word was inadequate.
And I'm like, that's it.
And that for me, I realized.
And I'm like ready to cry even just thinking about like the moment when I was like, that
word is it.
Because for me, every moment, no matter what I was doing, all of a sudden I felt inadequate.
I had when our younger son, my kids are 12 and 10 now.
My older son was 19 months old when my younger son was born.
The younger one is one with disabilities, including a yet undiagnosed genetic syndrome.
And in that, and we've done literally every test science has available up through full
genome sequencing.
So he might be the only one in the world.
But within that, he has so much overlap with so many other individuals with diagnoses,
including epilepsy, autism, cerebral palsy, cortical vision impairment, feeding tube,
sensory processing, fine motor, gross motor, feeding tube.
Like he's like an overachiever.
He's like, I'm just going to, I'm just going to just collect these.
I'm just going to check all the boxes.
He picked everything from the menu, right?
Exactly.
It's like a menu and he's like, I'll take one of those.
I'll take one of those.
Surprise autism.
Oh, look, here's some epilepsy.
And you know, we could, we could joke and have a sense of humor about it because he's,
he's awesome and vibrant and engaged in the world around him.
He is mobile, which is not always the ultimate goal for all humans, but it makes his life
easier because he is so active and so on the go and like needs to burn off energy.
But you know, he, he walks like he's had a couple of drinks.
And by the way, he has a sense of humor.
So I have a sense of humor and everything that I talk about with my kids, we have discussed
with them and gotten their consents and I'm not posting things and talking about things
that we have not already discussed sharing as a family.
So this inadequacy thing, it is so real with my first kid.
I was like, my job is to feed him and change diapers and just love my baby.
I'm like, I'm so good at that.
I must be the best parent ever.
And then my second kid comes around and I'm like, I know nothing and I am the worst parent
ever because I'm like, I don't know anything about insurance and social services and evaluations
and how to make these phone calls and being on hold for hours with customer service while
I'm trying to like get one kid to eat and like the other kid to stop crying and like
nothing.
And so the feed your baby, change some diapers and just give them lots of love.
Even that feels inadequate.
And that feeling is awful because you're just like, I thought this is, I'm ready to cry.
Like I thought this is what I was supposed to do is like just love my baby.
And that part isn't what's hard about disability.
The love part is like check.
Like I got that box checked on my menu.
But all the rest of this, even a decade in, some days I'm like, we got this all figured
out and other days I'm like, where are my pants?
Like what's going on here?
And so that constant feeling of even now so far in some days I go to bed patting myself
on the back and other days I go to bed saying like, did I do enough and did I do the things?
And I hope that feeling goes away at some point, but I don't know that it does because
there's not a destination that I will reach or that he will reach and he will launch into
the world and go to college and have a job and support himself and choose to have a family
or not and will be have full agency over all things in his life.
Like that sounds like a destination and it is for one kid, but for the other kid, it's
like how do I give him agency over his own life and decisions and self-determination and
all of his things, but also steer the ship forever.
It's really busy.
And I don't, maybe this is too lofty of a question, but how do you reconcile those two
different days where you go to bed feeling like I did all of the things I'm number one
and then the other days where you go to bed feeling almost less than is there, I don't
know, maybe a mantra that you say to yourself or how do you pick yourself back up and go
to the next day?
Coffee.
In addition to that, I decided early on, and I have to remind myself of this all the time,
that the decisions I make for him are the right decisions and that the things I am doing
are the right things.
We can always question everything and we might never know the answers, but if we are telling
ourselves like I am just going to decide that like I am enough and I've got this, with everything,
like there were good days and bad days and with kids who do have especially extreme support
needs like my kid, like many of our friends and their children, the feelings and emotions
are extreme and just recognizing that and knowing that even when I'm wondering if I
did enough, just saying I did everything that I could in that moment and some days that
is just functioning and getting through the day and I haven't slept and I haven't showered
and we barely made it to school on time and all of these things that are a mess, is that
my best for that day?
And I feel like, yep, if just surviving is best and I forgot to walk the dog at night
and I'm, nope, like I'm doing the things.
And then I always, there's always lists of the, when I'm having a string of good days
or when there's downtime of the paperwork and planning stuff that I can be chipping
away at in those good moments and in those hard moments, which as we know moments can
be months at a time, not beating myself up for not tackling the list because there will
always be more to do.
There will always be more lists.
Even as I was writing the book, I was taking notes.
I was like, oh, this is good.
I should totally do this.
And then I revamped, I deal with my insurance company and I'm like, oh, I just saved myself
a lot of money.
Great.
So, I think we need to just give ourselves grace and like zero shame in some days I am
just functioning and treading water is the thing to do.
And then other days I'm going to do all the things.
And that's just how we work because this needs to be sustainable.
You know, it's kind of like when people are like, just don't eat sugar for the rest of
your life.
Eat this many grams of protein and eat this many almonds and you are going to be fit and
healthy and it's going to be great.
And I'm like, and that, that I could do that for like a half of a day, but I can't do that
for forever.
And I think looking at how this life can be sustainable for your child, but also for you
as a human, I am not the disabled person, but his disability is giving structure to
my life and is giving me this identity as a parent caregiver that I have had to learn
from the ground up.
And I need to be able to make that identity something that is sustainable so that I am
not growing to resent him or his disability or others who are both having brunch when
I'm on the phone with customer service.
It has to be sustainable.
So kind of that balance and knowing that being present is enough.
Yes, absolutely.
I'm curious if I can back up a little bit and ask if there was one thing that you could
go back and tell yourself when your son was diagnosed or give yourself a preview of the
future, what would you, what do you think you would have wanted to hear?
Man, I'm totally going to cry again.
So the original title of my book, it's now called Everything No One Tells You About Parenting
a Disabled Child, which is a giant title and takes a long time to type, but it tells
you what it is, it's all the stuff.
The original title of the book was, oh, here I go, I'm going to cry, was You Will Feel
Better because I feel like I wish I had a book or a sign or something that said that
next to my bed that I would go to bed every morning seeing that and I would wake up every
morning seeing that because everyone in the beginning was telling me how awful this is
and I'm so sorry and this is so terrible and what are you going to do?
I don't know how you're going to do this.
And all the messages I was getting led me to believe I feel terrible all the time.
I'm exhausted.
I am just wrung out and I don't know what I'm doing.
And because of all this messages, all this messaging I was getting, I felt like, and
this is this feeling is forever and that made it so much worse.
And if someone had said, I get how you are feeling in there and you will feel better.
This feeling is not forever.
And for me, what made me feel better is getting to know my kid.
And when any kid is an infant, like they're decently similar and they're cute and they're
infants, but you don't really know them as a person.
You're just kind of projecting all of these things and that you hope they'll do this and
do this and do this and you fall in love with that idea and then they grow into their own
idea.
But and for us, the diagnostic odyssey that we're still on started when our baby was an
infant.
So this was literally I was like, postpartum and hormonal and not fitting into any of my
clothes in addition to dealing with new disability information.
And not only did I not know him as a person yet, but all of these like, oh, maybe he'll
do this.
Maybe he'll do this.
I was being told, oh, no, no, you don't get to hope any of that for him.
You just get to hope that like, he survives and you're not in the hospital every day.
Good luck.
And it's just like, what?
No.
Like, of course, I felt like I would feel like that forever.
And I wish somebody had told me that feeling wasn't forever because I think I could have
I could have started the process of just loving everything.
Oh, here I go.
Loving everything about him from the beginning, just like we're supposed to do with all babies.
Instead of feeling like the world was telling you, you were being robbed of something or
broken or I'm so sorry, your life will never be this.
Yes.
Well, I love my child and I'm here for them and I support them and they are my life and
this is my life.
And just like everybody else on the planet, I make the best of it.
Yes, absolutely.
And for very many parents, even outside of the disability space, you might have a child
who doesn't check the same demographic boxes that you check.
And so all these ideas about the boxes that they check might be coming from a place of
you're just making stuff up, which is a terrible idea, but that's what we all do.
And when I started following actual disabled people online and their social media and these
organizations, and at first I was even afraid to do that because of all of this like negative,
horrible, wrong messaging of like, oh, disability is bad.
This is bad stuff.
I was like, I don't want to follow disabled adults because I don't want to be launched
into this world of tragedy.
Boy, that was wrong and ignorant and all the things.
And when I started, you know, when you have, by the way, we all have real life disabled
friends.
We just might not know they're disabled.
When you start talking about disability with disabled people, and the biggest part of that
is listening and taking in what they have to say, it just lets the air out of the balloon
to get real information from real humans.
And I don't know why that took me or anybody else so long to figure out because that should
be stop number one.
And you know, when you're talking to somebody who is disabled and saying I was a two time
White House appointee doesn't actually feel tragic.
It feels like, oh, you're awesome.
Okay, cool.
And your disability is wildly different than my child's disability.
The fact that you are saying that he is a part of this community and I can be an ally
to the community and it's okay that you check different boxes.
But you know, learn from people who are checking some of his boxes.
What you're speaking to right now is actually a part of a conversation that we've had in
our office recently.
And I'm curious to get your take on it.
What was it like as a non-disabled person writing a book about disability?
Did you have any challenges kind of getting into the space besides those initial of kind
of that what we're taught when we're younger of kind of just ignore it, you know, that's
what disabled people would like us to do.
What were some of the other challenges?
I love that you asked this.
For me, it was such a messy mess with my head thing of I have an identity within the disability
world, but I'm not disabled.
And how do I not talk over disabled people and take up if I'm taking up space where someone
who's disabled should be taking up space, then like, that's really yucky and not okay.
This book, first of all, just because you're disabled doesn't mean you're awesome at paperwork
or that you like paperwork or you want to write a book about paperwork.
I may not be disabled, but I'm weirdly good at paperwork, which is an awful like if I
was a superhero, that would be the worst power ever.
But there you go, I'm good at paperwork.
So when I started writing the book, I was grappling with all of these things.
And looking at disabled leaders like Emily Ladau, for example, who is interviewed here,
and she amazingly, we hired her to do a sensitivity read of this.
And really, she's been such an incredible resource.
She is disabled herself and a writer and influencer and creator of lots of amazing things.
I first started thinking about this as it's a disability book.
And it's actually is a parent caregiving book.
And I work really hard to get a diverse group of experts and parents that I source in the
book.
I've interviews with over 40 experts.
I've got a dozen ish parents who are contributing writing letters.
And I wanted it to reflect to how the general population where a quarter of the US population
is disabled.
And I said, I need first to be sure that in the book, at least a quarter of the experts
and parents are disabled.
And to say, I am writing a book within this space, but it is for parent caregivers of
how to build their journey to do the things.
And how can I build into this expertise from real life disabled people, not just about
the paperwork, but also about inclusion and ableism and disability rights and what life
looks like and feels like day to day from a perspective that I don't have.
And I think it's really important to acknowledge that while I am not speaking for my child,
I also am not required to erase my own existence as a parent caregiver.
I just need to be mindful and it is messy and I'm sure I will get it wrong.
But I'm hopeful that people will call me out when I get it wrong, especially about disability
things.
And I genuinely hope that I will learn and that I will be given the grace and opportunity
to learn when I get it wrong because I think as parents we get it wrong all the time.
Yeah.
Daily, right?
It's happening even without disability.
I just want to say that when I was reading your book, which I did, by the way, beautiful,
loved it, it very much, and I know we talk about the paperwork in the book, we talk about
the experts, the parents writing letters to themselves, that there's so many templates
in the book of ways to do things just to be more helpful.
But it really reads like chicken soup for the soul.
Do you remember those books?
Yeah, it really is.
It's so poignant and hopeful, but realistic and optimistic.
There's so many words that could be used to explain it.
But I think one of my favorite things about the book, going back to what you just mentioned
earlier about having an individual do a sensitivity reading, is that the images in your book also
have image descriptors at the bottom to make it more accessible to everybody.
So it's just really, really powerful that you look at the book, you open the book, and
you're like, oh, this individual is so great at talking the talk, but you also really walk
the walk.
You did sensitivity readings, you have image descriptions, you were talking to Judy Hume.
In the book, you mentioned speaking with Effie Parks.
There are so many experts in this book.
Were you already acquainted with them?
Did you seek them out?
How did you get all of this information in a book?
First of all, I'm not quite sure how I did it, but I think, like, oh, look, here's a
book.
I think it happened.
So there were a handful of people in the book that I was already acquainted with.
The overwhelming majority were just cold calls or emails.
Go into a website and with, and I know I talk about this in the book, with Judy Hume, if
folks don't know her, she is, Google her, she's awesome, known as the mother of the
disability rights movement.
She unfortunately passed last year.
And this is one of her final interviews is in the book.
Oh, wow.
Of course, I was like, I'd love to have her in my book.
Wouldn't that be great?
And in my head, I'm like, no, of course not, because she's way too busy.
She has been doing this at such a high level for so long.
And like, I'm just mom, like, at the park with my kid.
And so I was dragging my feet for so long about even reaching out to her.
And finally, one day I was like, I'm going to do it.
And I know she's not gonna respond, but I'm doing it anyway.
And she responded that same day and was so engaged.
Oh, passionate about this and about the messaging that we are getting to parents about exactly
what you just said, the, the, the real emotional and actual life piece of this, of the joys,
but also here's what's really hard and what's real and about people telling their stories
and about launching parents.
The vast majority of whom have a disabled kid are not disabled themselves.
She was so passionate about how we are launching parents into this world.
And I ended up amazingly being able to meet with her in person at her home.
It was so remarkable.
And I was like, I'm such a nerd right now because this is amazing.
And she ended our meeting by saying, this is too important to stop talking now.
Let's get our calendars.
When can you talk again?
Oh, wow.
And we had subsequent meetings.
She would call me random times.
I was like at the market and I'm like, hang on, let me put down the baby carrots, Judy.
What?
Yep.
I want to hear what you got to say.
She was so engaged and it was a reminder to all of us.
If there are people that we want to reach out to that can help put pieces together in
our own story, whether we are writing a book or figuring out our child's path, so many
people are reachable and engaged.
And the momentum of having so many great experts, I think really allowed so many people to say
yes.
And I was careful to get a group of experts that are diverse, not just in terms of ability,
race, religion, location, age, male, female, all of that.
But also, if you're looking for fancy pants doctors who work at fancy pants places, check,
we got that.
If you're looking for the highest level education lawyers in the country, check, we got that.
But also, we have a nurse who's incredible talking about home health nursing and hospital
nursing and what the experience is like coming into this from a nurse and how you can work
together better.
And people that are the regular everyday experts that we are encountering in our lives all
the time and what we can take from them and how we can work with the experts in our lives
that are not the fancy pants experts, but that it is so helpful to know, here's stuff
if a home health nurse is coming into your home for the first time, here's how you can
make that relationship work, that oftentimes those nuts and bolts things are more helpful
than listening to the fanciest lawyer talk about the highest level disability justice
things.
We can all find this knowledge.
And it was such an honor to have so many people contributing, even the parents who wrote letters.
Some of them I've met in person, some of them I haven't, but we were connected through,
I saw an article from a newspaper in Ohio and I was like, I got to reach out to this
mom and she was amazing.
And she wrote a letter.
So as you know, in this world, like there are so many remarkable connections that just
give us this huge experience.
Absolutely.
I'm also curious about, obviously there's a lot of preparation that goes into writing
a book and that it's very evident that you are yourself a very prepared person because
there's templates, there's examples.
I'm curious in your past life before this, you were not an author.
What made you want to take on the challenge of writing the book and how did you make it
engaging between, how did you, because there's very much a balance.
It's not paperwork.
It's not financial planning.
It's not school.
It's not community.
It's not just parents.
It's not just experts.
It's very woven into the narrative of the book.
How did you make it so engaging like that?
Thank you for asking.
And I so appreciate that you read the book and feel all those things.
So for me, I come from a career with pretty much no practical application in the world,
which is I spent most of my career coming up with ideas for talking animal movies and
that's a job.
Who knew?
So I'm very fortunate that I was a development executive, which means coming up with ideas
and making stories better, working mostly in feature animation, companies you've heard
of in companies you haven't heard of before, working on all kinds of cool movies, some
live action stuff too, but primarily talking animal movies, which is awesome and really
fun.
And I love those.
And transitioned from that into screenwriting and into writing fiction books.
I never in a million years thought I would write nonfiction.
When I finally felt like it's time I have to write this book, I was literally Googling
how to write a nonfiction book proposal because I don't know, but it worked out.
And I think what is the piece for me that allows all of the conversational illness and
the storytelling and the approachability of this is that it turns out coming up with ideas
for talking animal movies actually does teach you some real life skills.
And for me, it is the storytelling.
And so I think in terms of storytelling very automatically because I didn't just sit down
one day and write a book, even though I had been managing a grocery store for the last
two decades, I sat down and wrote this book having lived in the world of writing and storytelling
for so many years.
And really through other writing and things I had done had developed a voice, which is
basically this is how I talk in my head and I think in lists and bullet points and weird
quips and conversations and things.
But there are books out there that are tremendous and are helpful and wonderful.
And those books might be memoirs written by these beautiful eloquent author parents of
how they've done this.
There are books that are here's a lawyer saying, I'm going to walk you through this process
because I'm a lawyer.
And they're offering different things.
But for me, I was like, I don't feel called to write a memoir.
There's so many great memoirs out there.
I feel like I don't need to do that.
Other people are doing a great job.
I certainly, you know, I'm the talking animal mom.
I can't write that clinical hero or the efficient steps book.
But what I can do is I can use storytelling, whether it's my own story, whether it's sourcing
stories in these letters from other parents that are in every chapter, whether it's talking
to experts of what is the beginning, middle and end of this conversation.
And I think that's what makes this book so unique and such a singular resource is storytelling
is so universal.
And writing this and even when I read this, I'm like, oh, this is good.
I wish I'd written.
Oh, like, oh, I did write that.
Weird, super weird, but great.
If we bring our community and other parent caregivers in from a universal place where
we are starting with here is the heart of this and my story is your story is the other
person's story.
Your diagnoses are not going to be the same as my child's.
He literally might be the only one with his thing, but there is so much that's universal
in our stories.
And once we feel connected to the parent caregiving experience, then all the crappy paperwork
and figuring out like, okay, I'm going to fill out this template today.
I'm going to go through this worksheet.
All of that feels doable in a way that a super clinical book doesn't feel doable to me because
I don't feel that connection to it or to myself.
It just feels like another thing on the list.
And most of these templates have been sitting on my computer and are things I created in
the last decade.
And I would like email to a friend here and there when they needed it.
But I really wanted to say, how can we feel connected to the work of parent caregiving
so that it feels more purposeful and meaningful and we can high five each other when we do
that future care plan that has been hanging over our head for one day when we die and
our kid can't communicate that he loves the song Head, Shoulders, Knees, and Toes.
Creating that connection is so important to me.
And I love fostering other parents to tell the story that only they can tell.
It might be a blog post.
It might be a podcast.
It might be a book, a memoir, fiction, like whatever that is.
And I do do worksheets, workshops with parents of like, you have something to contribute,
but what is your unique thing that you have to share with this community?
And I think so much in this speaks to not just community of parent caregivers of disabled
children, but also bigger picture because everybody's got stuff.
If we're lucky, we have insurance that we have to deal with.
If we don't, we got to figure that out.
If like, we all have stuff that we have to figure out.
And I think the book works because there is so much universality in it.
And it I will always be on this journey for forever.
And none of us are ever going to know any of this.
But we do know that we're in it together.
We've talked a lot about, and it's a big portion of the book too, about insurance and setting
up for transition to adulthood and what happens when we eventually as parents are no longer
here to be the support.
At any point in your journey, were you in contact with your state's family to family
health information center, or were they combined with your parent training and information
center when you reached out?
So first of all, again, I'm going to come back to every state has a parent training
and information center, and this needs to be the first thing people tell us.
And it took me forever to figure that out.
And I literally was piecing together bits and pieces from other parents.
We were connected with our state social service department and getting services there from
an early age because our son was presenting with different disabilities from a very young
age.
I piecemealed everything together in such an inefficient and reinventing the wheel sort
of a way.
And I'm like, Oh, I could have just made a phone call.
What?
And also something that I did in the course of this book, I talked to so many parents
and parents.
And I love that you talk about in your podcast, the importance of getting information from
local sources, organizations and parents because each state is different, even under the same
federal guidelines.
And within each state, your city, county, area, school district, it can all be very
different.
So it's really important to individualize and also to take into account that not everyone
is coming into this from the same financial position.
Not only is there no shame in wherever you are financially, whether you're just like,
I'm rolling around money because isn't that fun?
Wouldn't that be nice?
Let me know if you're that person because I want to talk to you and know what that's
like.
Yeah, reach out to us in the comments, right?
If you're that person, I can tell you where to donate some money.
Like there are a lot of disabled run organizations that need that money.
So what do you do if you are a parent after you've owned the fact that there is no shame
in where I am financially, even if I'm in debt, even if I am struggling or scared or
whatever, what do I do if I can't put aside money for a future care plan or do this or
do this?
And I did an experiment where I was like, I'm going to Google Department of Developmental
Services, California, which is where I live, Indiana, Iowa, like Googled those things.
And each state has a Department of Developmental Services.
And I emailed a random person on their website, somebody who looks like they know how to do
this.
And I said, Hey, I am working with and helping advocate for families, some of whom do not
have the resources to plan for their child into the future and to memorialize.
Like what do we do?
And I got responses.
They were so non-judgmental, matter of fact, and helpful.
The people I emailed were not necessarily the people who had the answers.
When they were not the people with the answers, they copied the people who were.
People gave me their direct phone numbers, their direct emails and said, please feel
free to reach out.
There are resources available.
The answers might not always be what we want to hear.
I can tell you what I want to hear.
I want to hear this is easy.
It's not for even with the person throwing around like it's not going to be easy for
you either.
So just take a seat.
It's not going to be easy, but even if you are starting from a path of, I don't know
what I'm doing, email someone at your department of developmental services or even better,
your parent training and information center, because that's probably going to be actual
parents who are actually going through this.
When I very first started on this journey, the first diagnosis that we had for our son
as we've been amassing many on the menu was cortical vision impairment, which means cortical
brain vision impairments means you're seeing is impaired.
When his first specialist was a neuro ophthalmologist who said he has cortical vision impairment,
which for him means the physical structures are in place, but how his brain is processing
visual information, there is a disconnect and there could be a huge range with CVI for
him.
His range was zero.
He had zero vision.
He was blind and with CVI, there can be no improvement.
There can be tremendous improvement.
There can be everything in between.
And I had this like tiny baby and I'm like, what now?
So I literally went home from that appointment and I half jokingly say my book is the alternative
to go home, Google and cry because that's what we all do when we get the diagnosis because
nobody says parent training and information center.
Nobody says here's a book with the foundational info before you Google.
Everybody's just like, bye, good luck on the internet, which is horrible.
That'll be $25 on your way out, right?
Yes.
Oh my gosh.
Don't forget to do a copay.
Do a writer review for the hospital.
What are we doing?
So I literally Googled blind children in Los Angeles because I was like, what do I do?
And organizations pulled up and literally like I was as much of a wreck as a person
could be while holding a kid who was either fast asleep or crying at the time.
I don't even remember because I was such a mess.
And I called the first organization that popped up on the list and I was literally like the
blubbering, like I'm crying and I don't know what to do, mom.
And the amazing receptionist didn't hang up on me, listened to me, figured out what I
was saying.
And she said, hold one sec, I'm going to connect you to Diana.
And she transferred me to Diana and I have a years long relationship with this organization
now.
Because I literally called, I Googled and I called the first organization and I'm like,
I have no idea what to do.
And reaching out to organizations, to parent training and information centers, to other
parents and saying, I have no idea what I'm doing.
Where do I start?
Is actually really powerful because there are people who can't, nobody's going to figure
out this whole journey for you because that's not actually how life works in any scenario.
But there are people who can say, here is the next step or here is just something to
hang on to.
And you got to start somewhere.
And again, how can we empower parents beyond go home, Google and cry?
Because what a mess that is.
And we all know what Google can do when you Google, right?
You end up crying more every time.
And I'm like, is my child pregnant?
Look at what he said.
He has all these symptoms.
He's an infant and he's a boy, but maybe he's pregnant.
I don't know.
It could be anything.
I'm not a doctor.
And even friends and experts I've talked to who are doctors or who are educators who work
in special education who launch into this, who might say, oh, I'm disabled.
I got this.
My kid's disabled.
I find themselves saying, oh, this is very different when it's your kid.
And oh, I might be a neurologist, but whoa, how do I get early intervention services?
What's that all about?
It's hard for everybody.
Well, I know that you're incredibly busy out here promoting this book with and going on
podcasts and radio shows and all of that.
But do you have time for just two more questions?
Oh my gosh.
I have as much time for you as you want as long as I can give you one.
One like, please do this.
Can you create a workshop for other parents and training information centers on how to
do a podcast that is useful?
Like, but I'm so serious.
You have real conversations where it's just like I'm hanging out and it adds the universality
plus the here's how to actually do this in this state.
So that is my ask for you.
And then you can keep me as long as you want.
Well, I very, very, very much appreciate you saying that.
And I also hope to be doing something similar to that in the future for other parent training
information centers, not only in our region, but hopefully across the nation.
So I'll keep my fingers crossed and I'm sure I'll keep in touch and let you know how to
please do.
Please do.
Absolutely.
I think the last two questions that I have, especially not only as someone who gets to
the privilege of having a conversation with you, but also as a parent of two autistic
children myself, when you're, when you're writing this book and you're putting all of
this together, you close the book, you're done, you're submitting it.
What are you hoping that parents walk away from in the end?
Like if they remember one thing or they leave with a feeling, what, what is your hope that
it is?
You know, there's certainly the, you will feel better of it and the, oh, here's foundational
actual information to build your journey.
That is what I started out.
Like I hope parents get this and I believe they do.
And I believe this book does a great service in giving that.
But the thing above all else that I hope parents take away and that I certainly took away is
get information about disability from disabled people.
Listen to actual real life disabled people.
There are incredible content creators, leaders of organizations, bloggers, like there are
so many people who have given us this incredible gift of sharing their life experience and
it is free and it is available to you online right now.
You will learn a tremendous amount, not just about disability, not just about your child,
but also about yourself and your own bias, preconception, like whatever it is we are
bringing to the table, listening to and following real life disabled individuals is a safe and
easy way to say to yourself or out loud to the world.
Now that I have new and different and better and real information, I now think about this
differently.
I now have the ability to do better because I am becoming educated from real life sources.
And in all of us in all areas, we are going to be wrong and we need to be able to admit
that and if we can all say now that I have better information, I am going to make different
decisions or approach things, people, ideas, paperwork differently is really exciting.
Know better, do better, right?
Yes.
I love that.
You mentioned a few questions ago about how you were doing workshops with parents or for
parents.
Is there a way that people can reach out to you and be a part of that or is that something
you are working towards?
Absolutely.
So my website, kellycohman.com, it is K-E-L-L-E-Y, Coleman.com.
And join, reach out to me there, has my Instagram link, all of that.
And I will soon be posting these workshops.
I always conduct them for free.
I am so passionate about parents learning to share their stories.
That was a big takeaway from my Judy Heumann conversation about needing more people to
share their stories.
And especially there are a lot of really great people who are sharing their stories, who
are a whole lot of white ladies.
I am a whole lot of white ladies.
I have nothing against white ladies.
But we desperately need diverse stories who are approaching things from different angles,
cultures, points of views, perspectives.
And it is way too hard to find those.
So I am on a mission this year to really foster diverse families, individuals telling their
stories.
You do not have to be a writer to tell or to share your story.
There are so many different ways to approach this.
If you can't spell to save your life, cool.
If you don't know how to type, cool, just dictate it.
That's not the name of the game.
The name of the game is, I want to learn from your experience.
So if you could just write a book, it would be great.
So we need you and we need your voice.
And just so everybody knows, all the ways to contact you I have, and they'll be linked
down in the description below.
So we hope you reach out.
But I think my final question is, where, oh, is it going to show it?
Oh, oh, oh, maybe.
Oh, thank you.
Thank you for coming in to support me.
Where can we buy copies of this book for our friends, our families, our neighbors, our
doctors?
Where can we find it?
Thank you.
So release date is March 12th, and it is available for preorder everywhere at all the book places.
My website has links not only to Amazon, but if you want to shop disabled owned bookstores,
that's a thing.
And there are lists of those online in your local area, or they'll all send books to you
as well.
It is available everywhere, and even we all know somebody who needs this book.
And so whether it is you or whether it is putting it in the Little Free Library in your
neighborhood, or asking your local library to get it, if you cannot afford a book, there
are a lot of people can't pay $19 for a book, that is just fine.
Email your local library, send them a link.
I want this in every library.
This information that is usable and really easy to read and understand needs to be available
for free in every single library.
I would rather, I want everybody buy it, of course, but more than anything, it needs to
be in every library and doctor's office.
Because if this information is not available for free to everyone equally, then it continues,
because you know that gap in access to information, and there is not only no shame in your income
level, but your child should not suffer from the fact that you can't afford to buy a book,
access this resource, do the things, it all needs to be available for free.
Thank you.
Thank you for your time.
Thank you for writing this book.
Thank you for, just thank you.
I really appreciate it.
You can tell that you poured your heart and soul into this book.
It is so comprehensive.
It should be, you know, if I lived in a utopia, every parent got a now what guide and this
book anytime they got a diagnosis.
So thank you so much for your time.
Thank you.
And anytime I can be helpful to you and your community, I genuinely love what you are doing.
And I really wish someone had given me your podcast a decade ago.
Thank you so much to everyone out there in podcast land for listening in.
If you are in Idaho or planning on moving to Idaho and have any questions on systems
or services for children with disabilities, please reach out to us on our website at ipulidaho.org.
That's I P U L Idaho.org until then I'm Allison and this has been unlimited parenting.
Thanks for listening.
We'll see you next time.