Interview with Super Mom Jill Buzby

Jill Buzby knows a few things about being a caretaker to the disabled, she has two children with developmental disabilities. Today she shares what she has learned along the way about advocating for her children, negotiating difficult bureaucracies, and living and loving.

Transcript

Hello everyone and welcome to Living Chronic. Today I am speaking with Jill Busby Supermom dis disabled kid mom just out there doing the best work, and I'm so excited that she came here to share her experiences with being the mother of disabled children. So welcome.

Oh, thanks Brandy.

Now, like I said, you're, you're a mom to disabled children, and you've been doing this for a while. Your oldest son is 16 years old. So tell me a little bit about your experience and what you know, a little bit about what you've learned and how to advocate for your disabled children.

So, um, I have three kids and my oldest is in college right now. And, um, she's while, um, Technically, um, neurotypical, she's got anxiety issues and so we deal with that. Um, and then my second child is 18 and she has Down syndrome. And of course that, um, we knew before she was even born that that was gonna be the case.

And then my son is 16, so, and he has, um, non-verbal autism and so, Basically for 18 years I've been advocating, um, my daughter needed, um, open heart surgery shortly after birth. And so it began, I think even before she was born, making sure that she was gonna get the best care and she was gonna get the things that she needed.

Um, and. . She had the surgery, it was fine. She's good. Um, but you know, then it starts with preschool. Um, you start having to address the issues that your kids are having with whether they need speech therapy or occupational therapy or special ed classroom. Um, that started when she was and a half.

and so I'm not sure I even know what it's like to not be in that position, you know? Cuz I've been literally advocating for my kids for 18 or more years.

You know, that's what's so, um, amazing to me. Cause I think that my experience is similar to the majority of Americans. I never knew anything about what it was like to be a chronically ill person, a disabled person at all.

Mm-hmm.

me. And then I was so surprised to learn all of these different things, how difficult it is to get help, how, how many

Right.

the bureaucracy. Um, there's just so

Yep. 

you have to deal with. And it almost, you know, I like to joke that I really needed a PhD in, uh, bureaucracy and chronic illness and care versus, you know, my MBA

Sure.

It's so difficult. It's almost as if they're putting up these barriers on purpose.

It does feel that way a lot of times. And, and it may be true sometimes, and, you know, you go into, um, I E P meeting, which is a, um, individualized education plan that your kids will disabled kids have in the school system. Um, and it's just.  and around the table are all sorts of members from the school and the school system, and they're all there to tell you that we can't do that.

Um, and it's not all bad. Of course, they're wonderful people who want to help your child and want to do, give you services and give you the things that you need and create a. , but so many times you hear, well, we just can't do that. well, she's just not, she's just not able. We just, we just don't even need to shoot for that goal because she's not able to do that.

it's sort of you against this entire table of people where you're saying, no, that's not okay. You know, my child deserves this, um, and is legally entitled to. And you can't say You can't provide that. And you get into a battle where, of course they have their restrictions of, you know, time and money and staff and all of the things.

I get that, but my kid deserves this. And it becomes, and, and it, and it's very emotional too, because it's your kid you're talking about.

yes. I've learned that the hard way, you can be

very objective 

when you're advocating for somebody else, when it's your life, your

Yeah.

family. It's so difficult and emotional.

Yeah. you go into these meetings and things and you, you listen to reports and you have to fill out your own things for all kinds of, all the services, all of the things that kids get, like Social security and Medicaid, and Medicaid waivers and. , you have to fill out these reams of paperwork, basically saying

Mm-hmm.

can't do, which is just heartbreaking, and you have to sort of remove yourself from it and go, okay, like.

I've gotta tell the truth here. I've gotta sort of downplay it. I've gotta can't be emotional about it because this is what's going to get them what they need. But if you sit there all day, every day and you know, just hear like, you know, Sarah can't do this. Well, she's this far behind. Well, you know, William is not ever gonna do this.

So it's just horrible.

of course it is.

It's so emotionally draining. . So that's a whole other part of it that you kind of have to compartmentalize and, you know, think, okay, this isn't about my kid. Like it's not personal. Um, and a lot of times seems like that people on the other side forget that this is a human we're talking about and this is my kid we're talking about and I'm frustrated and I'm emotional and I'm getting upset.

And, um, They're just sort of on the bureaucracy side and going, well, no, you gotta call somebody else. Well, um, you know, you did this all wrong and without sort of, um, realizing that they're talking to a real human who is talking about their child,

and there's two things you said that you know, I think is so important for people to remember, to learn by and to focus on. The first is knowing what your child. Is entitled to knowing what you're entitled to, knowing what the law is. And I had another guest with Crohn's disease just like me, who was talking about times when she was in a bad flare, when she was ill, and she knew to go to her boss and say, no, you can't do that.

It's illegal. This is what I'm entitled to under the Americans with Disabilities Act. I thought that that was so

Right? 

a way to stand up for yourself and say, no, I

Yep. 

you know the importance of education, but the other thing, I think many people forget that we're all humans. There are humans involved. I know you are busy. I know

Yeah. 

a, a, you know, however many more patients, however many more, um, sheets of paper that are

Mm-hmm. 

about to cross your desk. These are humans behind everything. And we have emotions. We have needs like you,

Yep.

you know.

And you know, I'm doing this for my kids. You're doing it for yourself, and you're not feeling well. Probably a lot of times when you're going through these hoops too, just makes you, you, your patience is just that much shorter because

me. I've worried. I've

yeah, 

honestly worried for them. I thought, oh goodness. Please don't hurt this person, Brandy.

right? . Yeah. And it's just, you know, it's unfair that the people who are feeling the poorest and who are the busiest, um, have that much more work to do to get the things that other people just have.

No, absolutely. Um, I recently, well, I've probably said this before, but I've recently started writing my next blog post said, I don't want to be an inspiration. I don't, and I understand why we see so many inspirational stories. It does feel good when you see the kid with Down Syndrome who, overcomes the odds and starts a business or. You know,

Mm-hmm.

the wins the swim and, you know, the, know, special Olympics or the, the person with Crohn's who persevered and got out of the hospital and started a new career.

Mm-hmm.

But the story I never see are the disabled people. This world, the moms, the husbands, the wives, the kids, the families, the loved ones who are just sickof it all. Just, just ready to just throw

Yeah.

I, I do have days where I just say, you know what? I'm not gonna do anything. I'm not an inspiration. I'm not strong. I'm gonna cry.

Yeah. Mm-hmm. . Yeah. There you've probably heard the term inspiration porn, and it's very much these things that people post. Oh, isn't this wonderful? Oh, look, he got invited to prom. , you know,

Yeah.

thousands of kids get invited to prom every year. Like, why is, you know, this is special because my kid has a disability.

It's, why are you celebrating that? Um, I, it they shouldn't be an inspiration for getting something that other people take for granted. Um, and the other thing I think we've might have talked about this before too, is the sort of the comment and it's.  almost always meant well, 

oh, I 

oh, 

never do what you do.

oh. oh. I could just, you know. Oh, good thing you know they have you as their mom cuz I sure couldn't do what you do. Well yeah, he

exactly.

what you have to do. Like, and, and it, no, it isn't fun. Right. Exactly. And there are days I'm not sitting here going, oh, this is so great. This is so fun. There are days when I'm crying and I'm yelling at the phone and, but I do it because I have to do it and I would rather not have to do it.

Um

wanna be.

mm-hmm.

please don't send

NBC4, 



Just 

my

wanna have the things that

If you do send NBC four over, send them over. When I'm crying, I feel like it's so accurate. Are there times where I'm a huge triumph? Sure. Do I like to celebrate it? Absolutely. The people, I

yeah.

Yep. 

mean something to me.

Let's come together. Look what I just did. But I sometimes I feel like it

Mm-hmm. 

to highlight and say, you know what, no, you would do it too. And we're humans just like you. And there's a lot of

right? 

of it all. No, I don't wanna hear about your cousin who got through

Yep. 

you know, I. Let me cry. I'll,

Yeah. Yeah, exactly. . Yeah.

Cause

have to 

But today,

and Yeah. Yeah. And I, it's, I mean, I think it is true what you were saying, like you had no idea before, you know, you were in the position. and it's hopefully a little window into, you know what, not every day is great. Um, we don't like this either, but this is what we have to do.

Maybe it makes people think like, oh yeah.

I guess certain things are hard that I never would've thought of. I mean, I think I get that comment sometimes too when I've brought something up. Can't think of anything offhand, but someone saying, you know, I never would've thought of that. would've thought that would be an issue, or I never would've, that wouldn't have crossed my mind that you would have to go and actually ask someone to have that or,

learn something new every day. Um, there's always something new to learn, uh, of course. You know, of course I, I told you the, one of the, I mean, I know you, I, you know, and, but something that just struck me was a Facebook post that you made, and there was a photo with just stacks and stacks of paper all over the table.

Mm-hmm.

and every day

Yes. 

was something that you have to do get your children services.

Right. Applying for some services.

thought

Mm-hmm.

point, right. You know, I, I told you earlier that when I couldn't go to work, at one point a

Mm-hmm.

just apply for disability. Like, that's first of all, that's just not how it works.

You don't just apply for disability. This is a bureaucracy

Right. 

and layers and layers, and it's not designed to be easy.

Yeah.

photo ucsa just illustrated

Right. 

well, how hard you have to work, you're entitle.

Yeah. And it, it's kind of designed to fail. I mean, and, and not everyone has the privilege, whether, you know, that's time or money or, um, , your educational level or the color of your skin or whatever it may be, to sit down and get through all of that. Um, You know, maybe English isn't your first language.

Maybe you don't understand how certain things work in this country cuz you're new here. Or how are you really going to get through all of that paperwork and all the phone calls and being told, oh nope, you've called the wrong number. You gotta figure out who else to call if, if you don't have a certain level of privilege to be able to, to take the time and to know how to do that because it is not.

And, um, I've said it in, in every show I've done. a pushy broad, I'm, you know, I'm kind of, I'm very Type A, you know, as an army officer, an mba, you know, spent

Yeah.

and leadership. and still there's times where I think, you know, I. can't push forward anymore. So if

Yeah. 

timid

Right.

are just by nature, maybe like, I know I'm

Mm-hmm. 

sometimes, and I'll tell you, no, no.

I've read the law. I know what it is. But what if you're not a very

right? 

person and maybe you feel intimidated by this person you're on the phone with who know probably has this big education you don't have, and they're making you feel intimidated. They're saying no, you won't understand.

Mm-hmm.

Um, is what stops a lot of people.

I think. They think, oh, I'm,

And even when you are in a I've read the law about free inappropriate education and you know, the ADA and all of these regulations, I know what, you know, my kids are legally entitled to have. But you're in a meeting where five people are saying, no, we can't do that. And then you start to go, okay, well wait a second.

what did that one, um, sentence in the vape say? Like, do I have it right? Am I wrong?  and you just get to a point where no matter if you are a type A person or you know your stuff, you start second guessing and you, and you start go, oh, oh, okay, well maybe, maybe they're right. Maybe they can't do that.

Um, and it's, it's hard enough when you've got your emotions going and you know, you're trying to remember all the things.  to keep it all straight and to actually get, and sometimes you're just tired, either tired of dealing with it or literally tired because know, your 16 year old was up all night. Um, that you're just kind of like, all right, fine.

fine, know? Yeah. , which is just,

it's

know, it's not fair.

um, if my life, if your life, if it were an assignment handed off to. you know, somebody in a corporation, they'd get a staff of at least 15 people help out dealing with this.

Yeah,

have, we'd have a, you know,

Sure. 

a medical doctor in there. We'd know, some psychiatrist in our team.

We'd,

Yeah,

trying to reorganize the whole, you know, here. Um, it's hard.

sure.

Yeah, but I think you just, you just have to through, you know? I mean, what, what is that saying where there's like, um, way over it is through it or something. Um, you, you just have to, and you just have to sort of gather your village and your team and make your own sort of, you. section or assistance or whatever you need, which is why I think a lot of like special needs moms are very close because somebody else has gone through it and you can reach out and say, do you do when you know the school just won't give you X?

And you need, you need to ask for help too. Um, We just, no one person can do it by themselves. And I'm sure you probably have support groups or, or, um, people that you know that have the same circumstances as you, where you kind of bounce things off each other and go, like, what do you say? Or who do you call when

for everybody, no matter your per personal situation, whether you're a caregiver, whether you're a disabled person,

you Yeah. 

chronic illness software, your support group, your your, your loved ones, that's the most important thing. I could not survive as soon as I ended up with drug induced lupus. I got really, If you will, I hate using the Ill word. luck here. But, uh, my neighbor, I

Right. 

my neighbor has uc and I have Crohn's. So we immediately bonded over that. Oh my gosh. We

Mm-hmm. 

to each other. And then as I was going through the drug induced lupus

right. 

comes over and she says, Brandy, my best friend back in Boston has drug-induced lupus. Will you talk to her? And I said, well, my goodness. Yes. And you know, it was the

Mm-hmm. 

we both needed. Cause I, you know, there's just times you don't think you're gonna survive it.

Yeah. . Yeah. And even if there's no actual help involved, just knowing that you've got somebody else who's in the same circumstances as you that you can sort of commiserate with or whatever.

I

Um, 

right. You know, cause we're already tired. Right. We've done so much research on things that we are not experts

right. 

I mean, if only I could go back in time and tell 18 year old me you're gonna be ill. I would have switched to major to biology.

But you know, those, those time

Yeah, go to medical school or something.

here I am, but you know, just as well as I

right?

it is to do so much research on something you're not an expert in. And then after doing the. you don't

Yeah. 

an advocate to toss it over to. So now you just change hats and put on your advocacy hat and now you're

Right.

Um, so it's so much easier to be able to reach out to your friend, your support group and say, who's done this? What do I do?

Yeah.

I have nothing left at me. Give you some instruc.

Yeah. And yeah, and there's power in numbers too. You know, years back, I don't know how long it's been around, but in Arlington, a special ed PTA was created, um, because some issues just weren't being addressed and one person couldn't make a difference. But when you get, you know, a whole entire group of.

Who all have students in the school system to push for something, um, then it's not so hard. Yeah. Um, and you can go and say, you know, is an issue that's happening in my school or my neighborhood. Can you guys back me on this? Um, and that helps tremendously too because you can, there's power in numbers a lot of times.

Um, and so you can get both the like emotional and actual support that you need to get something changed.

You also, we talked a little bit earlier about, you know, that strength in numbers and being represented and something that I had never thought about. You

Mm-hmm. 

too tired, even when you're sick of

Yeah.

cover the cost of this. You apply for the services.

Because if too few

Mm-hmm.

if too many people just give up, then suddenly, whoever, whatever politician or

Right, 

is involved with that particular program, they say, well, numbers are dwindling. It looks like we could cut services, and you have to be represe.

right.

And the thing is that everything is interconnected. So if you kind of drop the ball on one thing or choose like, well, we don't really need that service right now. We, you know, I'm just not gonna worry about that at this point down the line. You know, let's say then you want to get your kid into some supported housing.

You know, they're 20 years old now. They need to move out of the house. You need a respite. They should be, um, you know, using some of their independent living skills. So you wanna get them into a group home will, you have to have.  the thing that you dropped the ball on

right?

four years ago, because if you don't have that, you can't get into the, you know, supported group housing.

So everything is connected in some way. You'll try to get something and they'll say, well, you don't already have ssi, so you need to get that first before you.  our thing, and it just goes around and around. So you can't really slack on some of this unless you're gonna slack on all of it.

Right.

and who has the means to

know, and

do that?

Uh, I mean, I know it's been this way for myself, so I'm sure it's something similar. Nobody just hand you a very easy flow chart to follow. Oh, well it's eventually gonna need this, so let's make sure we're starting with

Yeah. 

today so that in seven years

right? 

for this. Of course, that would be

Exactly. Mm-hmm.

of a informational, but they just don't

right?

No. And I think sometimes they can't because each, each, um, they don't even know what they're doing a lot of times. You know, so you'll, like, I know a lot of, a lot of our kids are, um, getting to the age where they're applying for, um, SSI and, um, social security and it, it gives a little bit of of money per month for them.

Um, and no two people that you talk to will give you the same story if you call and. . Okay. So, you know, I submitted the application two months ago. Um, I'm supposed to be doing this now. Someone will say, no, that's, no, you're not. You have to go back and do this and you, if you talk to a different person in the same agency, you would get a different story because it's so complicated and so bureaucratic that even they don't know what they're doing.

And so, . It's just, it's crazy making, because you go around in circles and you spend, you can literally spend a day on the phone trying to get one little thing accomplished,

things I like to drive home. When people ask me, well, what, what, what, what? What's so time consuming about what you're doing? Well, that I can spend all day long on the telephone maybe if I'm lucky, accomplish one tiny thing then now that I've done that, I can add on to that tomorrow.

right? 

Here's putting in my next 10 hour day.

right? Yeah. And this is all, again, to get simple things for our kids or our parents or ourselves everybody else just has, um,

be able to have it as well.

go ahead.

Yeah,

Right, exactly. Um, without all of.

um, you know, I've, one of the big, I, there's a lot of big things I've learned and taken away from this experience in my life, but one of them is, please stop thinking of me as somebody different than you, cuz I'm not. We all are, we're humans. Maybe we

Yes. Right?

but you know, often, um, I, can live my life the same as you.

I just need a couple of accommodations. That's it. Treating me like I'm so different. I

Exactly. 

lot of capabilities,

so different. Yep.

children. They'll act like, you know, or the

Mm-hmm. 

I'm not that different than you. I just need little help. Yeah. So I

Yep. Exactly. And, and it can happen.

Yeah, we can,

It can happen to anyone, you know? Just because you don't give birth to a disabled child doesn't mean your life can't change God's.

yeah.

There be an accident, there, be an illness, something. You know it, your life can turn into mine

so scary.

tomorrow.

I mean, your spouse, a family member. I'm confident. My husband never in a million years thought that this would be our life. When he married me. When he married, no, when he married

Right. 

I

And neither did you.

I, I was a pretty great career, you know, and I was super independent and he was so proud of marrying this woman who

Mm-hmm.

did everything on her own and was so strong and independent.

right?

and now, you know, not that I'm not still strong and independent, but a level of care that I certainly didn't need 15 years ago.

Right. . Yes. And so I think even if the, these sorts of things don't affect you personally, you're lucky,

immune.

um mm-hmm. , but they might, and you just, like you said, we're not so different from you. Um, you know, you could be us at any point. And so for people to not think of this as sort of an other issue, like this doesn't affect me, this is.

going to affect me. These are not my people. so I don't really need to pay much attention to this or worry about accommodations or, you know, I don't need to say to the library, Hey, you know, you, you don't make it very easy for us to get in this building. Um, because at any moment it could affect you.

what's good for sort of, um, what's good for, um, a disabled person.  can also be good for you. Um, and so you may think it doesn't affect you, but

Yeah, absolutely. And I mean, we're all

it does, or it could. Mm-hmm.

Um, and,

right? 

you know, every, any, any and every person could be somebody special in my life at any moment in time. I like to think. And, um, you never know how that.

Mm-hmm.

person that you're ignoring right now could be a very important piece of your life at some point.

Yeah, exactly.

everybody, you know,

yeah. 

you

So,

What's the one thing you really wish you knew you first, and for you it's gonna be became a disabled mom.

yeah. Oh. . I don't know. You know, like I said, I feel like I've been doing this for so long. I kind of don't even know. I, I, I don't, not kind of, I don't know what it's like to be kind of a typical mom because my oldest child was 16 months when her sister was born. And so from that point, this is my life. So, um,

But I think when I started out, I thought I had a lot of fears about what it was gonna be like. Um, and in a lot of ways it's really normal. It's, you know, my life is much like anyone else's. My parenting is very much like anyone else's. Everyone's looking out for their kid, everyone's, you know, going to the teacher or the coach or the whoever and saying, Hey, this wasn't.

Um, and that it's gonna be really, really hard a lot of the time,

that's

but it's also gonna be fine.

heard since, again, starting living Chronic. I just keep hearing over and over again. You know what I learned. It's gonna be fine. She's still gonna live a great life.

Yeah.

Well, thank you so

Yes, exactly.

and, and sharing some of your lessons learned and your life and what it's like being the mom of children. I really appreciate you coming on. Well,

thank you. 

it was great to chat. Thanks for having me.