"Educate Yourself!" Words from author, advocate, and caregiving Mom: Mary Elizabeth Jackson

Welcome back to Hope for the Caregiver here on the Family Talk channel, Sirius XM 131.

This is Peter Rosenberger. This is the nation's number one show for you as a family caregiver. Those of you who are taking care of somebody with a chronic impairment, how are you doing? How are you holding up?

What's going on with you? 877-655-6755, 877-655-6755, if you want to be a part of the show. We are joined right now by Mary Elizabeth Jackson.

She is an award-winning author and a mom of two special needs children. Mary Elizabeth, tell me a little bit, how old are your children? One is 16 and one is six, so they're very spread apart.

Well, that makes it a little bit interesting for you, doesn't it? It does, since I have a 19-year-old, a 16-year-old, and a six-year-old. The interesting thing about my middle and youngest is they both were nonverbal, but kind of in different ways and had some similarities, but both had different challenges.

It definitely has made the journey very interesting. My middle child, I don't talk about this very often, but my middle daughter was abused in the school system at the age of five. I think you become an advocate as soon as a child is born, whether it has abilities or disabilities. It doesn't matter because the baby can't speak for themselves and they need medical care or help.

For me, that turning point was when my daughter was abused, and that changed every single thing in my life and my husband's life and our whole family. I became a much different advocate, and I'm an ambassador advocate for Autism Tennessee, but I also chose the journey to change law in the state of Tennessee to protect kids. That's a real uphill battle, which is sad because no child should ever be mistreated ever by anyone. When you have to teach your child how to speak their own language, it's very different. When you have a child with swallowing issues or sensory issues, language processing issues, learning disability or developmental delay, it changes how you parent a child. It's not kind of the same thing as a typical kid.

You have to really educate yourself. I would tell moms, parents, mom, dad, grandparents, aunts, uncles, whoever is raising the child, if they have a suspicion of something that is a little off with their child, then they need to speak up for that child and say something to the pediatrician or the school system, the teacher. They need to push for what they need to get for that child, testing, services, because you're that kid's voice. If you don't do it, it won't get done.

Having services for a child or therapies, early intervention is the difference between night and day and a child's success at having success in their life. Let me ask you a quick question, Mary Elizabeth. When you started doing this, and we've talked a time or two, but I don't know you. I just want to ask these questions because it just strikes me that when your daughter went through what she went through, when your other children have gone through these things, you've stepped into this role of advocate and you started putting yourself out there. What was the first time that you ever met with a school official or any type of legislator, anything like that? How did you feel? What was going on with you when that happened? Were you scared? Were you nervous? Were you thinking this is surreal or what was going through your mind?

Yeah, those are all really good questions because when my middle daughter was first diagnosed, she was two and a half and I didn't know anything about it. I was as naive and green as anybody else out there in the world. I trusted the tests that were being done on her. I trusted the people who were in charge of everything. I trusted the school system to do exactly what was needed for my child because why would they lie? Why would they not do what they say they're going to do or be on my side?

Not all school systems do parents have trouble with, but I will say that as I learned how to advocate for myself, I was educated in a way that I would hope other parents wouldn't have to be by their child being abused by a teacher. When I approached legislators, there is that anger that's there for what's happened and there's that passion there to change things and make a big difference, but you have to be very calm. Did you testify before a committee or did you go to their office or how did that work? Because I'm thinking there are other parents that are across...

I mean, this show is nationwide and actually goes worldwide. We're now downloaded in like 300 countries on our podcast, so there's a big audience here of people who feel just as nervous about this as you did and so they don't know quite what to do. Did you call up their office first or did you go before a committee or how did that work? Well, okay, so we were in a legal battle for about three and a half years with about six other families, so I did have to testify in court and there was a lot of deposing and things like that. It was a very stressful time in our lives, one I'd never do again, but when I made the choice to approach state representatives and senators, I have never been in front of the actual committee. I've been in front of a table of different representatives and senators speaking about this and sharing my story and telling them. I reached out to every single department or office that I thought could help me because this happened to my kid, it happened to other kids, it's happening across our country.

I've had people reach out to me with stories that you just think you're living in another world when you hear these stories. My advice is if you have something like this going on, like your child has been abused or you want to help change law or make things better in a school system, you have to first call your state representative and you have to call your senator and you have to be brave enough to do that and say, I am a concerned parent. For me, I had a story, so I called and said, I want to make an appointment with you. I want to come to your office and talk to you about what's happened to my child.

Now I've gone and done disability day on the hill and I've met with lots of people. Well hold that thought, we've got to go to a quick break and we've got some calls that we're going to loop in and let you talk to some of these people that are calling in. Is that okay?

Yeah, absolutely. All right, this is Hope for the Caregiver, don't go away, 877-655-6755. This is Peter Rosenberger, this is Hope for the Caregiver, we'll be right back. Welcome back to Hope for the Caregiver here on the Family Talk Channel, Sirius XM 131. This is Peter Rosenberger, I'm glad that you're with us, 877-655-6755, 877-655-6755. That is my wife Gracie with Joni Eareckson Tada singing from her new record, Gracie's new record, Resilient.

You can see more about that at Hopeforthecaregiver.com, Hopeforthecaregiver.com. I am on the phone here with Mary Elizabeth Jackson from Middle Tennessee, Nashville Tennessee, who is an award-winning author and she also is a special needs mom, also have with me as ever himself, the Count of Mighty Disco, Jon Butler, joining this round table discussion and Jon. Also from Middle Tennessee. Also from Middle Tennessee and Mary Elizabeth, if we can take a moment, I'd like to loop in Tiffany from Seattle who is calling and she would like to talk a little bit about her son, Noah, who's six years old I believe. Tiffany, how are you feeling? Oh, I'm pretty good today, thank you for accepting my call. Yeah, well tell me what's going on with you. Yes and Mary Elizabeth is on there with you as well and she can hear you, so what's going on with you?

Well, God bless you. I just wanted to hone in on the conversation a little bit, this is my first time being on this type of platform, but I was listening in and my mind was completely blown because these are some of the things, the issues that I go through and I've been ignored through the district, which any child with a special need, they have rights and when you don't know you're right or aren't educated in a certain area or are still numb to the fact that your child is on a spectrum or has some sort of disability and then there's no one to speak up for you, you just don't know. And so, Noah, my son, six years old on the spectrum, I'm starting to learn his rights and I only begin to get knowledge through Children's Hospital, they have an ABA program that I put him in and it is a wonderful program.

I mean, they teach you about rights and what to expect and about the different frustration, cognitive skills, all kind of different things. And so, anyway, needless to say, my son had gone through some things through the public school system and I've been ignored. I've talked to the ombudsman and they were like, they told me basically if I don't want to get the school in trouble, you know, we probably need to like leave it there because they do full investigation and nobody knows anything. I've had to endure my son being without a teacher in the class being total chaos and they finally got one and things have leveled off a little bit, but I've had to sit quiet while the school district told me, do not pull him out of school, you know, they will get CPS involved, they will come down on me pretty hard if I just pull him out.

And so, my son digressed from the program that he was in at Children's immensely, like, I mean, just totally digressed, there was no teacher, he was learning behaviors from other children. And so, I was upset and I wrote a letter to the school district and I went through an appeal process and nobody has gotten back to me and this was about, this has gone on since September and we're in March right now and so I have been ignored and I'm thinking about taking it to a legal level. I would tell you to get an advocate lawyer, yeah, I would tell you to get an advocate lawyer. Tiffany, Tiffany, let us let us butt in here for just a second with you, Tiffany, and Mayor Elizabeth is exactly right, go ahead, Mayor Elizabeth and talk about the steps that would be helpful for her. Right, I would definitely at the place that you're at because you're not being listened to and you have done the steps that you've taken, I would get an advocate lawyer, I kind of go maybe above an advocate and then go straight for an advocate lawyer. And the other thing is for parents out there listening, you know, when you have a child with a diagnosis, I mean, we have to become educated as parents to know what to do about the diagnosis of our child and how to do what we need to do at home for them, you need to reach out to any disability offices that you have in your area for education, help and support and resources that they have there and there is a website called Wright Law, so it's W-R-I-G-H-T, yeah, S-L-A-W and on there it's a great resource for parents and your legal rights that you have. If you were to pull your child out and you're going to homeschool them per se until you get it figured out, they can't do anything about that obviously because that's your right with your child and is it a possibility for you to get your child into a different school, maybe that's out of your zone. I'm not sure how things work up there where you are but at this point you definitely, I would get an advocate lawyer involved in this situation to kind of push things through. I do know, like I do go into school meetings with parents to get services for kids and I do know that when we come in with a parent who has been educated and you have maybe an advocate with you, your experience in the room is going to be totally different and it doesn't mean that anybody has to get mad or angry, the best thing to do is to always be calm, very diplomatic, very like, hey, we're here for the child, that's the main reason we're here and what do we need to do in order to get the child the services that they need. But as a parent, you're right, you have to educate yourself and I would definitely, go ahead. Well, education is absolutely imperative for that Tiffany and for other special needs parents and also you got to understand as a caregiver, we're not really in a position where we can say no or accept no. I've never lost an appeal with an insurance company through Gracie's enormous challenges and it was because that no was not an option, I couldn't fail and your child is the same way, they're counting on you not to get this or not to quit, you're going to get it wrong, you're going to make mistakes but quitting is just not an option, these children have no one else to advocate but you as a parent and these people, these state officials, local officials, they will bend to this because there is nothing like special needs family that are on a mission to get this accomplished and they will bend to this and you're not alone in this fight Tiffany, you're really not and it means a lot that you're called. By the way, Mary Elizabeth has a whole series of books that she's doing, she's got a new book coming out and this is a part of your poolicious, poolicious, did I get that right Mary Elizabeth?

Yes, I know, it's a word when I looked at my son when he was a baby, that's the word that came but yeah, I mean this is for kids to learn to accept themselves like where they are, how they came into this world, they are loved by mommy, gearing them with and it doesn't really matter what ability or disability a child has, they can learn empowering words for themselves to stand up for themselves and to help them feel better about who they are and where they are, you know, we've got to teach our kids how to be resilient but Tiffany, you're right to continue that. How do people find these books? Oh, okay, yeah, can you get them anywhere?

Well right, yes, you can get them starting Tuesday, you can go to maryejackson.com on my website and on Amazon starting on Tuesday, March 10th. maryejackson.com and by the way, I'm going to be putting all this on the podcast, it's a free podcast, go out there to our website, hopefullhecaregiver.com and you can just follow on the long, follow along on the podcast, it'll all be out there and we'll do this. We've got several calls coming in so I want to get to them, Tiffany, thank you so much for that call.

Keep listening. Before I let you go, I just wanted to add really quickly that regardless if your child is on the spectrum or not, all children need someone to advocate for them, they need you to be their hands, ears, mouth, nose, eyes because we live in a world, you know, that I mean as you know what type of world we live in, you know, but our children need us, they are the future and I just wanted to add that and God bless you and thank you for the resources. You're quite welcome. Thank you for calling.

Thank you, Tiffany. Good luck. Prayers for you.

All right. Prayers. Renee. Renee in Alliance, Ohio. Renee, how are you feeling?

I will be a million percent honest. I am extremely overwhelmed. I have- Well, you're in the right place.

Yeah. I have a four year old son with epilepsy. I have a 13 year old with, he has undiagnosed autism. I know he's on the spectrum but we're fighting to get him diagnosed right now so he can get the help he needs and I have an 11 year old son who has ADHD so there's a million things daily. Your house is busy.

You got to know him. Your house is very busy. Absolutely. In addition to anything else already and then- Tell me this, Renee, what can we talk about with you today? My four year old has brain surgery coming up on the 23rd of March and I'm just not exactly sure what I need to do just emotionally, spiritually, mentally to prepare for this. I'm still concerned. I'm still nervous about is this the right option but as I see my son having these seizures and he has drop seizures where he'll just lose all tone in his body and come crashing down to the floor and depending on where he is, he can get seriously injured and we've seen that.

So I know that we need to do something to stop this and I've been praying about it. Let me back up a little bit. Renee, let me back up. What did the doctor say? What did the doctor say? Is this something that they feel like is going to help? Yes. Clearly? His doctors are the ones that suggested this.

They called the surgeon, they set it up and we're very blessed that we have the head of neurosurgery at our children's hospital that is going to be doing this surgery. I'm watching the clock here so I got to be real sensitive on the time frame here so let me just jump in real quick on this. This is unsustainable if you don't do anything. Your little boy is, if you don't do anything, this is unsustainable.

He's going to get hurt, all right? You have gone to the best information you can get, you have sought out the best experts you can and guess what? This is the path they've said and you're putting yourself in their hands. These people went to medical school, they're professionals, they know what they're doing. This is not their first time.

I would ask them if it's their first time but it doesn't sound like it is their first time. Don't be afraid by the way to ask questions of your doctor, of your surgeons. Like that.

Like, yeah. Mary Elizabeth will back me up, the time for timidity is over, a child's life is at stake and that's the lesson Mary Elizabeth has shared with us already on this show and don't be afraid to ask. I've asked plenty of times with surgeons, they didn't teach me how to confront surgeons in music school but you know that's something you just kind of learn along the way. Somebody's got to fight for this little four-year-old boy and that lies with your family to do that. So don't be afraid to ask questions but you've put yourself into the hands of these people who are professionals.

They're giving you the best counsel that they have and you're making the decision because if you don't do something, this child is going to get hurt. All right, so my simple word to you Renee is today, right now, breathe. Just breathe. Four seconds in, eight seconds out, slow it down because you've done all that you know to do and when you've done all that you know to do, what does scripture say? You just stand.

You just stand and trust that he who began a good work in you is faithful to complete it. Period. Okay? That's it. That's what you do.

Yes sir. And yea, though I walk through the valley of the shadow of death, I will fear no evil for what? Thou art with me. This is the valley of the shadow of death. This is what it feels like, but you're not going to be walking in fear because he is with you.

He really is. Now, I've watched a gurney go into surgery more times than I care to remember and it's a very scary thing and I get it, but you are not alone. You will never be alone and I'm going to do something for you. If you'll hang on, Ed's going to get your information and I'm going to send you something in the mail that will get there before you go through this surgery and I think it's going to comfort you and strengthen you. It's my CD. It's Songs for the Caregiver and I just let Gracie and I play and sing for you a little bit and that's what we're going to do.

It's just something that we can do that you can listen to when your heart gets all crazy. Okay? So hang on and Ed will get that information. This is Hope for the Caregiver. This is Peter Rosenberg. We're talking with Mary Elizabeth Jackson from the Nashville area and she is dealing with special needs children and an advocate for special needs children. She's written books to help special needs children come into that place and learn new tools. Don't go away. We've got more to go. This is Hope for the Caregiver for you as a family caregiver, 877-655-6755.

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www.caregiverlegal.com, an independent associate. Have you ever struggled to trust God when lousy things happen to you? I'm Gracie Rosenberger, and in 1983, I experienced a horrific car accident leading to 80 surgeries and both legs amputated. I questioned why God allowed something so brutal to happen to me, but over time, my questions changed, and I discovered courage to trust God. That understanding, along with an appreciation for quality prosthetic limbs, led me to establish Standing with Hope. For more than a dozen years, we've been working with the government of Ghana and West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people.

On a regular basis, we purchase and ship equipment and supplies, and with the help of inmates in a Tennessee prison, we also recycle parts from donated limbs. All of this is to point others to Christ, the source of my hope and strength. Please visit standingwithhope.com to learn more and participate in lifting others up. That's standingwithhope.com. I'm Gracie, and I am standing with hope. Welcome back to Hope for the Caregiver here on the Family Talk channel, Sirius XM 131. This is Peter Rosenberger. This is the nation's number one show for you as a family caregiver.

How are you feeling? That is my wife, Gracie, with Russ Taft on her new record, Resilient. You can have a copy of that if you go out to hopeforthecaregiver.com.

Just click on the music there, and we'll be glad to send you a copy of that. What we ask is any donation to Standing with Hope. You just have heard Gracie's story, a little bit of what she's envisioned after losing both of her legs. We just had a whole bunch of prosthetic supplies picked up this week, John. I'm so excited to say that we have feet on the way to West Africa.

Oh, that's fantastic, and a sentence that people don't normally hear. Part of what we do, Standing with Hope is the presenting sponsor of this show. It is the vision of Standing with Hope for two different programs, for the wounded and those who care for them.

And for the wounded comes from Gracie's own journey when she gave up both of her legs, she wanted to have a way to reach out to her fellow amputees and provide practical, meaningful help, and hope as a way of sharing the gospels. We do. We put legs on them. They go walking and leaping and praising God, and we recycle prosthetic limbs. Part of that is we have to buy some of the things we can recycle, and we collect legs from all over the country.

They go to a prison in Tennessee run by CoreCivic. It's one of their many faith-based programs, and if you go out and subscribe to our podcast, you can hear some of the interviews we've had with their chaplains and so forth on why this is such an effective program and why this is such a meaningful one. Recycling the legs. Who would ever think that you could do that?

But we thunk it, and Gracie thunk it, and we do it. For 15 years, we've been traveling over to West Africa and working with the Republic of Ghana and treating patients from surrounding countries with this, and you can be a part of that. And these inmates that do this, they can recycle the feet, the knees, the pylons, the screws, the adapters, the connectors, the socks, the belts, and all that kind of stuff. Every bit of this is at StandingWithHope. If you want to see more about that, standingwithhope.com.

And take a look. And like I said, if you want to get involved and support this ministry and support this show for the wounded and those who care for them, we'll send you a copy of Gracie's CD, Resilient. I think you'll find it very meaningful.

All right. We're back to Mary Elizabeth Jackson. Mary Elizabeth, thank you for your patience, and thank you for just offering your insights and being a part of the discussion here as an advocate for children, and also as a special needs mom yourself, and as somebody who has taken this to the next level, and you've written a whole series of books, a new one that comes out, a brand new one comes out Tuesday, and these books are not just touchy feely kind of books. They're practical of helping kids and families come to grips with this very difficult thing in a way that's easier to understand.

And that is such a huge thing. And I love that about your work, Mary Elizabeth. Tell us a little bit about this newest book. What's it called?

Well, this one is called Poohlicious, Oh, the Wonder in Me, and it focuses on the kind of awkward silliness of ages four to seven. Oh, I'm on board. And... John's got awkward silliness, too. Yeah, yeah. I'm sorry. I've got a seven and a 12-year-old, so yeah, yeah, we're here. Oh, yeah.

Yeah, you totally know. Everything's awkward and silly, and kids feel weird about themselves, and it doesn't matter. The reason I wrote this book was, well, there's three in this series. Now, I'm also working on an eight series that will have social skills in it that will kind of affect all kids, and I'm working on that right now, teaching them words like integrity and walks with good purpose and things that are tools that they need to have for life. They all need it, right? So this one in particular has got affirmations in it, teaching kids positive words, because they got to have things to fall back on. They need to learn empowerment young.

They need to learn positive words to say to themselves, to others, and it's free, which is great, because it's that resource we have inside of ourselves. And helping kids to be resilient in whatever's happening with them. So it's a passion that I have about empowering our kids.

So last week, I was in two schools and... Go ahead. Let me jump in, Mary Elizabeth. One of the things I like about, and I like to spotlight this in fellow caregivers who are doing things of value and creativity and passion while serving as caregivers. I mean, you're not waiting for your life to stop being a caregiver for you to do the things. You're living life in the midst of it. You're taking things that you're seeing every day and repackaging in a way that makes sense for you, your children, and for other people's children and families. And that is the core message of this show is that we don't have to suspend our life as a caregiver and put all of our dreams, our desires, our creativity on hold, and I love that about you. Tell me your website again, because I want to make sure that people know where to go to find you. Oh, thank you so much. We don't do it, Peter.

It will never get done. And this is a great outlet for us because when you're in the middle of the trenches, take what's happening and then turn it around to it for a tool for someone else to help them. That's what we're supposed to do is help each other, you know, and be supportive. My son Grayson says, when life hands you dilemmas, you make deliminaid. Yeah. There you go. I like that one. To be a t-shirt. He needs to make it into a t-shirt.

It's very funny. Well, tell me your website, Mary. Tell me your website. It's maryejackson.com and this book will be up on there by March 10th on Tuesday and ready to go. And I'm working on a journal for kids. This is self-empowerment journal and for ages K through two or four through seven, eight, that kind of thing. And it's got on it things that a child who's nonverbal can use to express themselves, their emotions because it's very hard for even kids who are verbal to express themselves.

So let's give them tools. It's hard for me to express myself, honey. You're a grown-up.

Well, that's been very generous growing up. That's still to be determined, okay. But let me in the closing minutes that I have, I would like for you to do something for me. According to this program right now, we've had these other two callers, I wish we could take more, but we're about out of time. We've got 30 seconds. There are people listening all over the country right now who are just now stepping into this world.

Give them in one sentence. What can they just do to hang on to hope for today? What would that be?

Oh my gosh. Well, prayer is one, obviously, and lean on the support around you and educate yourself. So instead of sitting in the fear of all of it and the worry and the stress, move forward through education and learning and knowing that you're doing this for that child.

Take yourself out of it. What do you got to do for the child? Absolutely. What are their needs? Education is empowering. You know what?

Healthy caregivers make better caregivers and part of being a healthy caregiver is learning and educating yourself. This is Peter Roseburger. We're out of time. Mary Elizabeth, thank you. ForTheCaregiver.com, we'll put this out on the podcast a little bit later. We'll see you next week.