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"You Can't Have A Zoom Class With Special Needs Kids"

Hope for the Caregiver / Peter Rosenberger
The Cross Radio
August 18, 2020 12:55 pm

"You Can't Have A Zoom Class With Special Needs Kids"

Hope for the Caregiver / Peter Rosenberger

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August 18, 2020 12:55 pm

I invited my cousin, Meredith, to call the show and share her family's struggle and journey with their special needs daughter and the inability to attend school. 

"We see the chaos of the world, but more than anything ...we just see the four walls of our home. There's a lot of guilt. You feel guilty if you send them ...or you feel guilty if you keep them home. There's a lot of guilt as a caregiver." 

As you will discover, however, Meredith is not only insightful and experienced as a caregiver, but she is extremely funny and a brilliant woman who designed a piece of adaptive equipment for her daughter's wheelchair to help in the COVID-19 world.

After listening to this interview ...please share it with EVERY special needs family you know. They will laugh, learn, and more importantly realize that their are NOT alone! 

 

Peter Rosenberger is the host of HOPE FOR THE CAREGIVER.  Heard weekly on 200+ stations, Peter draws upon his 34 years as a caregiver to help strengthen fellow caregivers. 

Hope for the Caregiver is the family caregiver outreach of Standing With Hope.

 

 

 

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Rosenberg. This is the show for you as a family caregiver. How are you feeling her doing he knows the place because for you is my wife Gracie offer for CD resilient you want to copy that.

What the hope of the caregiver.calm and whatever's on your heart, you can. There's a donate button very close to this work that were doing and it's a text that will give whatever's on your heart will send you a copy of her CD. It's a very good CD 877-655-6755 877-655-6755 and John got it I got actually one of my all-time favorite people in the whole world on the phone. It's my cousin and she's been on the show Forstmann some years it was Meredith and I just love her to pieces.

She's one of the funniest 20s ladies I know and heard parents with your mom's gotten funnier but your dad really funny and I he was a very funny man and an he was up to the very end he was still cracking jokes and I love that about him. But Meredith is a mom of a special needs child, and she has certainly embroiled herself in the world of the caregiver has a good word for you.

Meredith is featherweight good way to what I want you to tell us a little bit about your journey as a caregiver and your daughter, Emma Kate and then I want to talk a little bit about something that's incredibly depressing right now for families particular families of special-needs children so give us a little back story on Gary years now and we had three often get and we had a great plan. I can't tear it apart and we had it all planned out and on when to poisoning her perfectly healthy and off now and actually college their 20 and 18 now I tear it apart to explain and down, but not according to our plan on drinking was born when all kinds brain affirmation. They were congenital how God came to define her sleep brain and she had global not in operation contract range. That means that she had all kind of delay are not really delayed at that point there just never develop her.

She is wheelchair-bound. Yeah she's diapered she's unable to pick up anything and hold it, you put something in her hand. She can't remember if they are and fail unit, not things that she articulate, which is our blessing, he publicly I would say cognitively, maybe a four-year-old around their physically old, she's pretty much if you can you your kid can do it for month and I can possibly down but that's not even a guarantee that they don't tell you because she would never speak they could hold up when she got diagnosed with old and we got her back neck. If I have been pushing mine and I knew something was wrong.

Should my third child. She didn't develop normally. She cried all the time. I'm not exaggerating it was raw and I will actually your parents were very kind to me are not concretely led South Carolina and your parents were in Anderson South Carolina that we file them to get that and they were incredibly encouraging to me and Barry and my kids through that experience of getting a diagnosis but they told us she would never that she would never talk she would never do pretty much anything. They told us to take her on the mother and that she would live to be about three and so when we moved to Georgia she was almost to do. We need to Georgia planning mentally to bury a child and now is not pumping any kind having your brain that out, especially with your two-year-old but God thought differently. She is 16.

She has lots of struggle.

She has some features are probably her biggest struggle, but on amine and she's legally blind and shared ISSUES that she funny. She is a weenie. She is sarcastic, she's rude on but she's as she had a lot of €16 here. Basically, she's a lot like your dad on me is fine.

I mean that he seemed quite a personality. I remember that day they gave me her diagnosis was in residency at the time. He is a physician and resident Bialik, felt had all three kids and the neurologist came in and he said you know opt out a lot about me getting what you want versus applicant now that you get an he is really neat little good news, but I mean after all, he had just said. I'm thinking there's no way there's anything good until I mean I'm in shock and yet processing and he said only part of her brain that looks at all normal.

Like at all like just a little bit is her personality center and by goodness that is the truth. The child has a ton of personality and we are so thankful that she's she does not she knows you know what she wants, but she doesn't want she she can tell you what she wants. She can tell you when she's tired she can tell you she can't tell you what to tell you that he hurt. I'm blessed that it's a long road at the heartbreak if it's a lonely road.

Being a parent at that of a child that requires that much care. It's a very isolating place, but it got a lot of beauty. My kids are using rule there when my boys they are little child my dad made over which is so cool you know that she had smoked this lady like my dad and funny like my dad but he also had the most tender spirit and you want even college to become a nurse, and he wants to he just he's been a nurse that his sister essentially for his whole life and he had no different and you he doesn't have any resentment towards that role. He has embraced that he is kind he actually is applying for a job could be her caretaker. We have a like a waiver, program here in Georgia that allows you to employ somebody they can play family full, there allowing him to work for a short time to get my caregiver that help me occasionally. She's actually pregnant and says she's been out here in a couple weeks so I needed somebody just for a short time and asked him about, but can you back and let my little child, and I said absolutely because it's it's a short-term thing that he's just an neat guy neat guy he is and you know this is a lot about you and various is that you you race because caregiving is a is a family. It is endemic and in you and your family have have certainly when you view view boarded it off of you what I've taught for this.I will say this you did did get to get away one time in the not-too-distant past and have little time with some girlfriends of hers, John, and she flew out here to Montana and it's always a good leader at the airport just guides he were to go out there it all these 40 something-year-old women welcome played at Boone Meredith was the only war that was able to drive. If you do what you like them with the guilt of leaving a couple real about here because my cousin was just a just a dog owner my whole life or her role as the head and she consulted all these these women around her yell about where our cowboys at what you know who is Meredith the mom from Brent.

I've always been the caretaker at my friend that they did they wear to bed but I was so graded that you were able to get away and have that experience and you would Barry have been very good about that sort of thing of patient so because I know it's been hard but now that brings me to why had you all today were dealing with because were in such uncharted territory of the Cova 19 you can't take it would take to school. She can go to March always telling a friend of mine who also has a special needs child, and she feeling very overwhelmed and I was trying to encourage her very hard time finding when you've been home we been hampered want to face the hundred and 55 a was actually my oldest that's kind of funny but unlike the college that we can have 155 days edit. You know if your caregiver is already in isolating role you were home a lot. You now out of a lot of invitations or a lot of things that your friends or your peers are feeling. You have to kind of think I don't have child care for that, or that my daughter can't physically can't get a wheelchair into where we are going to do you work whenever you have a lot of things that you kinda have to bow out of but being I guess home for as long as we been home from mid-March and not having that out with because that that's kind of the great outlet for me to get housework done or spent a little time having coffee with a friend take a class at my church or just whatever is kind of good for me today.

I don't have that opportunity right now and at first I was a little like that. You know that is really called my heart about that that encouraging others are playfully thin. Our school going back in September and that their goal is September 8 to start back and they keep pressuring me to get an answer and I don't I don't like school is a great outlet for her degree olive for me, but also have to think of her safety and that there's no there's no guarantee that she would be okay with that. There's no guarantee she wouldn't bet on it. I got a soccer in the conflict and and it's gonna get all figured on goggle probably be very clearly not liking he's doing that but being home.

It has isolated me even more here in this time and I think special needs parents are very much feeling we were just it's a lonely place to be right now it is. The world had so much chaos. We see the chaos but we really wasn't anything to see the four walls of our house and that sounds very silly to say but that's how it no suitable for wall and it is a school can reach out and they can do with something that you can't hide and I'm very quiet, Peter. No sound so sorry that you can't have a retarded kid and you can't get it.

NHI worked hard to do it and they are actually living Carrollton where we live, because our teachers are so fantastic where we are we in a school system along with Barry interviewing for jobs because we wanted a school system that we felt great about because Emma will be in full until she turns 20 take and so we live our school system. But if a hard date. You can't virtually teach kids that are in. She can't see it broke my brother Richard about this and I know the human you guys since they have spent a lot of time together because they have, especially his daughters. Well, she's 32 today is matter fact I have but it's you know and they kind of served as a real source of encouragement to you guys but know you're doing it out of the people to us is really amazing to watch how that just keeps the torches keep to the past, but he said special needs. For as hard as it is for families of school-age kids were there which it is very hard and when I lectured Thomas over to talk about that because he's heading up a new virtual education program on the photo to this job but my brother is Dr. of education and is taken on the job to start something tomorrow were here for thousands of them.

Students virtual yeah yeah we talked about this last week yeah because Mark is my guides are induced distance-learning as well and that's you know that this this came up, and it's just a crazy time for everybody, especially things rivers will Moses. Richard said those hard as it is for families of normal children, special ed children is just brutal. It is the catastrophe is like Woodmere to save where is that when you have to make your decision but now I don't know but I don't think that I may see she had the right to an education and it is my job to fight for her right. The best education for her and for our family and so fighting for. That means that even if I do five night September 7 I feel like I could fight hard enough to get on it but I'm not a mean fighter up. I'm I am very much a teammate of Michael, but I feel like they would respect my decision September 7 or if I change my mind. The Templeton unit with classes starting on the eighth. I feel like they would just respect my decision. You know I'm always been a team player with our school and I am incredibly supportive of them and I think in the Tyndale and they know that this is an art decision.

We actually went and had a hat. I I brainstormed for hours trying to come up with a way to keep anything on the cake that would protect her because we have a mandate at our school you have to wear a mask and I'm thinking I mean yeah he can't pick up a piece of food bye-bye goodness she can't now offer faith in about one minute or less and shall scheduled really bad. She sees when she had theater. Now I'm not really just not an option for her. I think we need to find a shield that she has a tray that attaches to her wheelchair and we designed a shield for her wheelchair that he can then cover her prompt and mean it will help protect others from John for Q4 to have germs than we not know about it. I would never sing her school if I thought she was sick but it will also this is. This could come up and down in front of her on her wheelchair like a tree you can take it off on her little lips around the edges that could outlet and though it is made of a kind of Plexiglas though. I wanted to be where she could see everything going on around her, because I think that the missing cheese, gotta feel like I do, that these four walls anything unified is not by I think it'll be good for her. If she can get back out and do a couple of errands you possibly get a school. This will help other people know not to get her state because her peers that are noble. They don't understand that they right now.

Don't need to get each other's faces, but her shield get that subtle prompt that they can't get right in her face actually got it last week and we love it. She, like this. I created it and then I went to I didn't have any tool a lot of actually look at build that I didn't have any tool Plexiglas until I call the local glass company and ask them if they could me and very nice man who owned the local store said absolutely and he got really excited about it because what I had defied it. I had designed it just said Velcro onto her trade on around the lip that he had stopped.

I got stuck producing my cousin is brilliant.

She's Georgia Tech red was a mechanical engineering, gestural engineer industrial on the numbers she sees, but she also for her sons. She was the captain or the whatever you would call it a thought of the robot club is that I last rested. Are you build those robots like attack each other. She said no that's not what we do not violate the first law of robotics are one of the big solo spinning blades.

You know that's not what we do on the weekends you know after class. That's what she does it. So here she is doing something innovative like this where distillates would steal this idea for mixing running off of it. I would talk to the store that I went to our local store there great and I like we need replicating something like that for who had the same and is not the only personal wheelchair in the city at 11 pounds is not applicable unit for people people are isolated. If you like immunity you have it here in a wheelchair. You are isolated right now and it is hard to be isolated for a long time. You can have all the support system in the world of friends and family that when you see the four walls of your house for hundred 55 day it's hard.

It don't matter who you are is I get her out here yet and will have pictures on it. When I did see that today in my heart, then you can't have anything thankful that we think outside the box. I think when you're a parent or a caregiver at all and you learn how to do all kind of thing and we wait, I can with her, you know, by myself pretty much wherever I need to get her and she almost as tall as I am and weighed almost as much about it but you learn how to do all kinds of weird and will house with a family comes out with a buy shoes for Gracie because it's it's hard for her to go to the store of images toward it, so I'll take a foot or her leg shoes her. I will videoconference her with it out to get victory of the roses that I was out of color photos you like these and the store clerks over there. The other just a little bit wide-eyed as their starting to look at her frequently because secure peers is that of a trickster, pulls out a list. It's not a good look.

So we created beyond what you would normally have to think making for yourself what you do and you and you and Barry and your whole family to such a no amazing sense of togetherness and fortitude and in a good sense of humor. You know that I think that should help her how important to you is that since a humorless, I think everything I think she thinks I think first of all we have to laugh at her and that I mean that in all the right way that we have to laugh at them.

The stuff she does her that she said that she you know tries to do and you have to laugh. You know you can't feel sorry for who I do feel terrible for her Sunday but a lot of funny.

She's 16 and you have to be able to laugh and we have to laugh at ourselves and we have to laugh at the family and we we do we enjoy it and we my kids laugh at her and they make fun of her like she's there for years because your impaired does not mean you're exempt from picking at each other love was his brother and his two sons, and they pick a guilty route. You picks out with a dog so that's how we all agree we do that to Tony know of this really would but it's of no I think I think you are in and of washes with Gracie and Gracie is very funny but not when she doesn't try to be funny in the sense of like a Buddha tell a joke. She can't tell a linear joke to me.

She just can't do it with each other so so so I tell her so big you could talk to the street while you can't walk a straight load but boy was she says something that's funny you prompted with it it it'll stuffing a big it'll be one of those moments when you just can't help it of their toes like getting mad about something. It was better to have an argument or something. As you say something so outrageous that just can't help yourself.

You start laughing and he realizes caregivers would got to have that release of letter that we got plenty of tears. I know you and Barry have had you really like cheerleading is likely, but I don't like Patty and filling but I don't like anything. I'm not kidding.

I watch many cry I don't like spring. Normally, because I just can't. I feel like I have a certain amount of profit hard thing. And why would I add someone made a part thing in my brain.

Yeah, what's I want to start things at that. But there's very few drama movies that I watched Gracie make me get funny they are to make me laugh kind of light with Dylan on any students sorry or don't laugh. We watch a popsicle check. Because it makes me laugh all that I need that show outrageous. My sister got me on that and that she'll if you are scheduled not yours will do yourself a favor and it is to live that life arrives.

Those guys are saying it it it is you see they are funny it it but you got to watch it with the group.

You know the desiccant at the I wish you build it more ahead of the tub because my feeling would've just spoke this week we will open you are, I just appreciate you.

I marvel at you guys and I watch what you do and the encouragement you are to so many. I see your exuberance of watch how your whole thing was engaging your sister and her family of what 17 mill 45 mL how the foster parent team so they just adopted adopted children assortment of foster children think she had to one, one fostering. I think you look on three malfunctions.

One comment I thought that amazing evening will I would like for you to call back when you make your decision until it is no I yeah and I like to note is that it doesn't matter. I just want to see how you are you coping with it and then some insights that you could offer to other people because you know other people wrestling with this too hard. They may not have as much longevity and in insights that you been able to acquire over a long time of doing this and I think you'd be very warm for people to hear that from you and a lot of guilt related.

There's a lot of guilt just for like your guilty guilty thing and I think it is your fault for sending him.but you tell yourself as a parent, it can be my fault and that's a hard place because it's not my fault that it doesn't make you feel left is that because the world think that you know I think I'm a stay-at-home mom.

I do not have a job so I could keep her but keeping our home may not be what that thing is for her and think that I think for me as a parent trying to not feel challenging 2000 thing to say about you have once again demonstrated while you are just such an amazing just grateful that your lesson I really miss Michael's and they are not very clear line will sit do whatever we are out of time. This is hope for the caregiver and thank you for being part of this marriage will hear back from you because as many times as you want.

Hopefully caregiver.com will see you next John and you know, do you know that there's a pandemic going on, you know, I read a couple of stories here and there to salsa up the good twitter you know I when I went and I went to Walmart and they said I do work placement from a cool but wife. Social peers are not required but face mask evidently are almost as elder.

Tell me a bit ugly but ruddy dangers… Who told Edward to Facebook is the reason I'm referencing that is because you know of our work for New Year's with prosthetic limbs, and we can't go to going to write that I will take Gracie over there. We been going to to to Ghana for many many years to help work with deputies over there but we been sitting supplies and were sponsoring more patients but were not sitting pings right now because we just can't. And we got patients that are lining up that are really needing some quality prosthetic era were contracting out with prosthetic providers there in West Africa. In Dublin there helping these patients that we really are urgently trying to treat get them up walking one of us. And if you do one of the crutches we have for the patient's daughters. We we target children and working age adults, children, students, working age adults and really that order.shall, because we would give them a fighting chance to have a productive life with the quality prosthetic limb. This is what Gracie envisioned after losing her own legs is not that we don't want help aging or so forth issues that this best work. Parts of it lately. A lot of these yeah in and out. We've had a lot of kids. We've had some some students that are getting close to the graduation with the their personally leading prostatic adjustments or a new leg new socket newsletters and sleeve. It will try to ship things over were trying to sponsor things in contract with the workers or do it. We could use the help.

So I'm asking.

Standing with hope.com would you just take a moment to go up to standing with hope.com look at the work we do and look what we are seeing and and get involved in in that you could certainly write us… Any questions about it. We would love to have your help today.

We really needed today for any donation amount whatever's on your heart doesn't let Wilkerson a copy Gracie CD and it went.

We just want you to know that this is this is what were serious about doing we been doing this for a long time. We can go over there in person.

But guess what, we could still help them get up and walk and you could be a part of that today. It's a gift that keeps on walking. I came up with that myself to you slowed walking and grace, with Gracie being a double amputee herself.

When we understand that in and in our 154 deal with prosthetic stuff right now with her and because she's constantly needing assessments and so forth and so we understand the need and rescue help with today's a good standing with hope.com today. Exhibit