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

Hope to hear you were here on the little table Sirius XM 130 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 and Mary Elizabeth tell me a little bit how how old are your children and wanted their very part. Well that's makes it a little bit interesting for you and I have a 19-year-old-year-old and picture all the interesting thing on about my middle, and youngest is that they both were nonverbal but kind of indifferent way and had some similarity that both had different challenges so it deftly had made the journey very interesting and my middle child.

I don't talk about it very often.

But my middle daughter went acute in the school system and data five and that you know I think you become an advocate taking a child is born, whether it has abilities or disabilities that doesn't matter because the baby can't speak for themselves. Many medical care or help you now, though I bet for me that turning point was when my daughter went to abuse and that changed everything. Nothing in my life and my husband like our whole family so I II became much different advocate and I'm an ambassador advocate for autism Tennessee but I also chose the journey to change the law in the state of Tennessee to protect kids and not been a real real uphill battle which is sad because no child should ever be mistreated ever by anyone, but when you teach your child how to speak their own language. It it's really it's very different when you have a child with swallowing issues or sensory issues that language processing issues learning disability or a developmental delay. It changes how you parent a child. It's not cunning the same thing as a typical kid on and you have to really educate yourself. You know I would. I would tell mom that her parents, mom, dad, grandparents, aunts, uncles who ever is raising the child if they have a suspicion of something that is a little off with their child and they need to speak up for that child and say something to the pediatrician or the school system the teacher and they need to push for what they need to get for that child testing services. Nino could hear that kid voice and if you don't do it. It won't get done and you know having services for child or therapies.

Early intervention is the difference between night and day in a child success at having success in their life is not contrary as you click?

When you started doing this you know we talked a time or two but but I don't know you are just one of just what Essex was just strikes me that when you daughter with her when she was through with your with your other children have goals of the things you stepped in this role of advocate and you started putting yourself out there. What was the first time that you ever met with the school official or any type of legislator anything like that. How did you feel what was going on with you when you when that happened was he scared would you nervous when you think of this is like this is surreal or were you will do your mother are all really good question because when my middle daughter was first diagnosed she was 2 1/2 and I didn't know anything about it. I mean I would is naïve and green as anybody else out there in the world, and I took it on. I would try trusted that the test that were being done on her. I trusted the people who were in charge of everything.

I trust the school system to do exactly what was needed for my talk is like why would they live. Why would they not do what they say they're going to do or be on my side, though, and not all school systems to parent 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 help other parents would have to be by their child being abused. He now by teacher. When I approached legislators it was easy there is that anger that they are for what happened and there's that passion there to change things and make a big difference on it but you have to ballroom committee or did you go to their office or how that work is something other parents that across me with this. This shows nationwide.

Alexa goes world what were were were nailed downloaded like 300 countries over politics so there's there's a big audience hear people who feel just is nervous about this is you did and so they don't know quite what to do and so are all just did you call up their office first digital before committee or how that work well okay that we were in a legal battle for about three and half years is about to cut her family so I did have to testify in court and with a lot of debt deposing and things like that. It was a very trustful time in our light when I'd never do again on but when I showed to when I need the toys to you approach state representative and senators I have never been in front of the actual committee had been in front of the table at different representative and senators speaking about that in sharing my story and telling them I I reached out to every single department or office, but I thought could help me because this happened to my kid happen to other kids.

It's happening across our country. I had people reach out to me with stories that exist you just think you're living in another world when you hear the stories that my advice is if you have something like this going on, you know like your child has been abused or you want to help change the law or make things better in the school system you know EE you you have to first call your state representative and you have to call your Sen., you have to be brave enough to do that intake know I am a concerned parent you know 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 happened to my child. Now I've I've gone and done disability downhill and I will not hold that we got a good quick break. We got some calls to let you talk to some good.

This is overweight. 877-655-6755 eight 776-5567-year-old little to six and 131. The speed Roseburg this 877-655-6755 877-645-6750 fathers.

But what if Gracie would join his daughter singing from her new record Christian record resilient. You can see more about that hope for the caregiver.com over the caregiver.com I am on the phone here of with Mary Elizabeth Jackson from middle Tennessee Nashville Tennessee who is an award-winning author. She also was a special needs mom also have with me as ever to himself the Celt of muddy disco John Butler joining this roundtable discussion. John also from middle to the CM of Mary Elizabeth if we can take a moment, I'd like to lupine Tiffany from Seattle calling she thought to talk a little bit about her son Noah was six years old, a blue Tiffany how are you feeling you call yes and married Mary Elizabeth on there with you as well. She can hear you. So what's going on with the conversation a little better on my first time being on a platform that I would would my mind was completely blown because some of the issues that I go through my minute you know are through the district with you know any child with special need they have right you know you're right for our educated in a certain area or the fact that your child is on drama started get the billet and then there's no one to speak up for you. You just don't know now my son pictures out on the spectrum.

I'm starting to learn his rights and I only begin to get knowledge through Children's Hospital.

They have a ABA program that I put him man and it is a wonderful program. I mean, they teach you about why bad about the different but straight and cognitive built all kind of different thing and so anyway, I found something through the public school for time and I've been no hard I've talked to him, but man, and there were like they told me basically I don't want to get the trouble you know we probably need to like leave it there because they do fold in and my word, you are my plan 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 practice it quiet while they will district told me do not pull him out of all you know they will get PPS evolving will come down on me pretty hard if I just pull them out and no, my son dying breath program that he was in children immensely like mean is totally digressed. There is no teacher learning behavior from other children and so I will do that and I wrote a letter to the school district and I went through an appeal, profit, and nobody had gotten back to me and this was about bomb on September what Brian Martin right now though I have been ignored and I'm thinking about taking it to a legal level and I'm not that I would tell you to get an advocate lawyer yeah I would tell you really can't log lettuce bliss, but in here for just a second with you to and in the middle.

It was exactly like live Elizabeth and talk about the steps that she would be helpful for right I would definitely at the place that you're out of luck to you and you have done the steps that you taken I would get an advocate lawyer iconic OPP above and advocate and then go straight for an advocate lawyer is about for parent out there looking you know when you have a child with a diagnosis. I mean we have to be at we have to become educated 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 you 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 right law You are IG HT right yes LEW and on their 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. I'll be thinking that you're right with your child on and is it a possibility for you to get your child into a different school.

Maybe that's out of your know. I'm not sure how things work up there where you are that it to me I would I would get an advocate lawyer and bolted to the situation to kind of pushing through.

I do know like IQ going to school meetings apparent to get services for kids and I do know that when we come in with a parent who is been educated and you have make an advocate with you your experience in the room to be totally different and it doesn't mean that anybody has mad or angry at best thing to do is to always be calm very diplomatic very like hey were here for the child that the main reason we here and what it 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 and I only Education is is absolutely imperative for that to civilians or other special experience and also you got understood as a caregiver were not really in the position where we can say no or exempt note of ever loss in the pew with an insurance company to Gracie's enormous challenges, and that was because the know was not an option. I couldn't fail in your child is the same way there telling on you not to get this will or not to quit. You go to get role you can make mistakes but but quitting is just not an option.

Children have no one else to advocate, but you as a parent and these people, these these state officials, local officials, they will been to this because there is nothing like specialty's family that are that are on a mission to get this accomplished and will be into this and you're not alone in this fight. Tiffany you really not. It means a lot that you're probably Mary Elizabeth has a whole series of books she so she got a new book coming out. This is a part of your pollution is pollution that I know yeah I know it work. When I looked at my son when he did the work that came 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. I and it doesn't really matter what ability or just the ability child had they can learn empowering word to themselves to stand up for themselves and to help them feel better about who they are and where they are. You know we got to teach our kids how to be resilient, but Tiffany looks oh okay yeah anymore will right yes you can get them starting today, you can go to Mary E Jackson.com on my website and on Amazon starting on Tuesday, March 10 very E. Jackson.com about putting all this on the podcast.

It's a free podcast go out there to website. Hopefully caregiver.com and you could just follow along all of apologists will be out there will do this. We got several calls coming in so want to get to them. Tiffany thank you so much for that call you at really quickly that not all children need to advocate for them on their hand here now know I we live in a world you know that you know what type of world we live in.

You know, but our children need that they are the future and I just wanted to add that you and thank you for the resource it will not prayers for you and our prayers remain remaining in alliance Ohio Renée how you feeling I will be. I am extremely overwhelmed-year-old son with epaulet 13-year-old.

He has undiagnosed. I know he's on a spectrum, but were fighting to get harm guide number you can get the help he and I have an 11-year-old hero who has ADHD, so a million daily. I think really there's three boys already and still be this what to we will talk about with you today. My four-year-old had brain surgery coming up on 23 March and I'm just not exactly sure what I need to do emotionally, spiritually know mentally to prepare for their bill will confirm I'm still nervous about this the right option, but as I see my son having seizures.

She hears drop seizures when there he'll disclose all tone in his body and come crashing down to the floor where he he can get injured and so I know we need to do something what the doctor said that they feel like it's going to help, yet clearly there doctors are the one that they called the surgeon they set it up and were very blessed that we have the head of neurosurgery at our Children's Hospital. That is just a much of the clock is the real sense of all the time from you so let me just joking with this, you. This is unsustainable. If you do anything okay. Your little boy is it if you don't do anything. This is unsustainable.

He's going to get hurt right you will go to the best information you can get you your sought out the best experts you can guess what this is the path they said you're putting yourself in their hands.

These people went to medical school there professionals.

They know what they're doing. This is not the first time, I would ask him if that's the first, but I don't doesn't silicate is the first. Don't be afraid. By the way, to ask questions of your doctor survives like I had meritless little back to the time for timidity is over the child's life is at stake.

Admit that the lesson Mary Elizabeth. This is shared with us already on the show and don't be afraid to ask of vast plenty of times with surgeons. They didn't teach you how to confront surgeons, a music school, but you know that something you just have to learn along the way that it so it's somebody's got to fight for this little four-year-old boy and that was with your family to do the don't be afraid to ask questions would you put them split you've you've put yourself into the hands of these people who professionals are giving the best counsel that they have in your making the decision because if you don't do something this child is going to get hurt or writes about most simple word to a simple word to you, Renée used today white male brief just brief for seconds and eight seconds out photo because you've done all you know to do that would done all that you know to do what Scripture say just stand you just her and trust that he who began a good work he was faithful to complete. Okay, that's it.

That's an J the walls of the valley of the shadow of death I will fear no evil for what now let me this is the valley of the shadow of death. This is what it feels like what you do could be walking in fear because he is with really is love.

What surgery will have watched the gurney going to surgery more times than I care to remember that it's a very scary thing that I get what you are not alone. You will never be alone and I want to do something for you but if you hang on your information and will send you something in the mail little little get there before you get there before you go to the surgery because go to coverage and strengthen you to my CD. It sold for the caregiver and I just just let Gracie to just play and sing for you little bit and that's what this is something that we can do that you could listen to when your heart gets all crazy.

Okay so hang on to that information.

This is hopefully caregiver the spirit Roseburg will talk with Mary Elizabeth Jackson from the Nashville area and she is dealing was especially children, and advocate for special children books to help especially children come into that place. Learned tools don't go away. We got more to go. This is hopefully caregiver review is a family character 877-655-6755 will be right after caregiver.

Think about all the legal documents you need power of attorney will, living wills, and so many more then about such things as disputes about medical bills. What if instead of showing out hefty fees for a few days of legal help paid a monthly membership and got a law firm for life. Well, we are taking legal representation and making some revisions in the form of accessible, affordable, full-service coverage. Finally, you can live life know you have a lawyer in your back pocket who at the same time is empty. It's called legal shield and its practical, affordable and a must for the family caregiver visit caregiver legal.com that's caregiver legal.com. Isn't it about time someone started advocating for you www.dotcaregiverlegal.com on independent associate. Have you ever struggled to trust God when lousy things happen to you. I'm Gracie Rosenberger in 1983 I experienced a horrific car accident, leading to 80 surgeries in both legs and became it questions why God allowed something so brutal to happen to me. But over time I 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 help more than a dozen years we 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 purchased ship equipment and supplies and with the help of inmates in a Tennessee prison. We also recycle parts from donated lambs. All of this is to point others to Christ. The source of my help and strength, please visit standing with help.com to learn more and participate in lifting others that standing without.com. I'm Gracie. I am staining with help and hope the family talk to Sears exam 130 is a family caregiver how you feel. That is my wife Gracie Withrow Steph on her new record resilient and you can have a copy that you go out to hopefully caregiver.com just click on music there will be glad to send you a copy of that what we ask is any donation staining with Hope you just have her Gracie 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 so understand a sentence that people don't normally hear what we we we we part of what we do instead with opus presenting sponsor the show. It is the vision of stay with over two different programs for the wounded and those who care for them and for the wounded comes from Gracie children which give up both of her like 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 gospel as we do. We put legs and we do go walking and leaping and praising God. We recycle prosthetic limbs. Part of that is we can but lived by some of the things some of things we can recycle and we collect legs from all over the country to go to a prison in Tennessee around the core civic is one of their many faith-based programs and if you go I'm subscribed to your podcast.

You can hear some of the interviews with head with their chaplains and so forth of why this is such a defective program that was such a meaningful recycling licks who would ever thought that you could do that but we stuck and Gracie socket and we do it for for 15 years we been traveling over West Africa working with the Republic of Ghana and in treating patients from surrounding countries with this and you can be a part of the these inmates to do this it lately can recycle defeat the bees the problems the screws the adapter's connectors. The socks the belts of all the stuff every bit of this visit. Standing with hope. If you want to see more about that standing with hope.calm and take a look and likes it. If you want to get involved and support this ministry and support the show for the wounded and those who care for them will send you a copy of Gracie CD resilient. I think you'll find it very meaningful. All right were back to Mary Elizabeth Jackson, Melissa, thank you for your patience. Thank you for just offering your insights and be a part of the discussion here is an advocate for children and also as a special-needs mom yourself and is somebody who is taken this to the next level and you've written a whole series of books doing that comes out a brand-new one comes up Tuesday and these books are not just you know touchy-feely cut of books there 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 the love that about you work meritless with tell us a little bit about this newest book what to call well called wondering me on the awkward feeling of age is 47 working 7 to 12-year-olds were we know everything awkward and silly and weird about the fellow that it doesn't matter.

The reason I write this book with mother three. Now I'm also working on and and eight.

That they will have social skills in it that will affect all kids and I'm working on that right now teaching at work like integrity and walk to get prepared for young things that are told they need to have her life, but they all need it right so you know this one in particular has got affirmation that it teaching kids positive or because I got nothing to fall back on. They need to learn empowerment young lady to learn positive work data themselves to others and it's free. Which is great and that that resource we have inside of ourselves and helping kids to be resilient and whatever is happening with them so you know if it's a passion that I have about empowering our kids though. Last week I was losing the rejected meritless with one of things I like about it… But like this and still caregivers who are doing things of value and creativity and passion. While serving as caregivers, you're not waiting for your life to stop being a caregiver for you to do this is your 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 and your children and for other people's children. Some families and that is that is the core message of the show is that we don't have to put suspend our life as a caregiver and then and then input all of our dreams or desires or creativity on hold. A love that about you tell me your website again because I will make sure the people know where to go to fund you think you so much we don't do it Peter, it will never get a great outlet for it because it when you're in the middle of the trench and take what happening and turn it around to look for a tool one else to help them that's forward for you and help each other you know it must.

Gracie says with would license you dilemmas you make to eliminate gathering T-shirts need to make sure your website your website and Mary E Jackson.com and on their market by March 10. On Tuesday and ready to go and I'm working on a journal for kids at health empowerment Journal and 1/2 ages cater to your 4378 that kind of thing and it got on it think that a child is nonverbal can use to express themselves with their emotion. It is very hard for even kids who are verbal to express themselves so cool I will permit okay but let me in the closing minutes that I have. I would like you to do is listening to this program that we fit with these other two colors. I wish we could take more but were by W 30 seconds.

Their people listing all of the culture of milk were just a stepping that this world give the been once it's what can they just to hang on to hope for today, what would that be my gospel prayer line obviously and lean on the port around you and and educate yourself. Go instead of sitting in that era. All of it and don't worry move forward through education and learning and knowing that you're doing it for that child.

Take yourself out of it out. Education is empowering you know what triggers a part of the health care giver is learning Stephen Rosenberger were out of time.

Elizabeth, thank you. Hopefully caregiver.com podcast will bit later.

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