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A Doctor Said These Horrific Words to the Young Couple With A Special Needs Child

Hope for the Caregiver / Peter Rosenberger
The Truth Network Radio
October 15, 2018 6:34 am

A Doctor Said These Horrific Words to the Young Couple With A Special Needs Child

Hope for the Caregiver / Peter Rosenberger

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October 15, 2018 6:34 am

"Take IT home and just love it."

When their son, Jonah, was born with severe disabilities in the 1970's, a physician said these horrific words to Rob and Merrill Galbraith. Stunned, enraged, heartbroken, and desperately alone, they struggled along the path of isolation so familiar to caregivers. 

Rob, a veteran Nashville producer, songwriter, and player (Ronnie Milsap, Kenny Rogers, The Bacon Brothers to name a few) returned to the show to share insights he learned from a tough journey that spanned 34 years until their son's death. 

Also returning to the show was Greg Tornquist and his son, Aaron (40). Aaron lives with Down's syndrome, and Greg and Aaron helped us bring attention to October's Down's Syndrome Awareness Month, as well as insights Greg learned from his 40 years as a caregiver for a special needs child.

Aaron is an ETA - and Elvis Tribute Artist, and he rocked the 1956 Elvis with this attire! 

Friends for more than thirty years, we sat around the desk and swapped stories and poignant moments from our combined 100+ years of caregiving.  We also shared a few laughs that come freely now with perspective.

 

 Author, speaker, and 30+year caregiver, Peter Rosenberger, hosts HOPE FOR THE CAREGIVER heard weekly on more than 200 stations. 

Sponsored by Standing With Hope

 

 

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Live from Nashville, Tennessee, this is Hope for the Caregiver, the nation's number one show for the family caregiver. I am Peter Rosenberger bringing you three decades of experience to help you stay strong and healthy as you take care of someone who is not. How do we do it? Volume.

That's the key. And we're here to take your calls 800-688-9522 and we are looking at the 65 million Americans every day who put themselves between an impaired loved one and even worse disaster. How do you help those people? What does it look like? How do you strengthen them?

How do you keep them fiscally healthy, emotionally healthy, all of the above? What does that look like? That's what this show is about and we'd love to have you on the show. 800-688-9522. I do have some special guests in the studio with me today and I'll just go around the room here. But first, wait a minute, I forgot, I almost forgot himself. The Baron of the Board, the Sultan of Sound, the Earl of Engineering, the man who put the word care into karaoke. He is John Butler, the Count of Mighty Disco, everyone.

Do you really want me to do some karaoke because I love karaoke? I have no doubt. Oh, of course.

I mean, come on. John, I have a room full of guests in here. You've got a crew in there. I don't know what's going on.

Are you wrangling today or, I mean, what's up? Well, I had, last year, we had the great pleasure of having Aaron Torquist on to bring awareness to this particular month, which is Down Syndrome Awareness Month. And Aaron drug his father in here with Greg. And Aaron had such a great time being on the show.

Other way around. We had such a great time having Aaron on. We did. And Aaron told me, he said, it was a dream come true. Well, and you're back. And I told you, I'd have you back. And you've been asking your dad all year long, is Peter going to have me back?

Yes. I keep telling my dad every year about this. And so, well, we are, we're going to make this a tradition with you. And we're glad you're here. Greg and I have been talking about this. And then I invited Rob Galbraith, who's also been on the show when we first started the show.

I think it's been a while, three or four years. And all of us, Rob and Greg and I have something in common. All three of us are caregivers or have been caregivers in our lives.

And I think between the three of us, we bring about 100 combined years of experience. I'm good for 40. You met 30. And I got 32.

So, yeah, that's if I do math, right. John died at 34. So I thought he's gonna say it had in common, I thought he's gonna say we were all part of the Sheila Rae tribute band. That's true.

The Richard and Sheila Rae tribute band. Well, there is that. It's all on the story. But we, and I wanted, a lot of times when you hear the word caregiver, you think of middle-aged women.

That's the norm. But we got three guys around the room here who have in various roles, two as dads, one as a husband. And so we want to talk to men out there and spend some time today, we're gonna talk also a little bit about dealing with special needs family and what's involved, what are some of the things that go on. And so if you want to be a part of that show, you can call in 800-688-9522.

The count himself will take your call. But first, Aaron said he's going to help me introduce our segment at the top of the hour, which is the caregiver tip for the day. And that's our theme song.

You didn't hear that, Greg. Greg doesn't have headphones on, but we have the old Batman theme for the caregiver tip. And the caregiver tip of the day is brought to you by Standing With Hope, which is the presenting sponsor of the show, and standingwithhope.com. And that's the ministry Gracie and I founded many, many years ago. We do two programs for family caregivers, which the show is a part, and then also for Gracie's fellow amputees in West Africa. We just returned from a trip there recently where we're putting legs on her fellow amputees. And you can be a part of that at standingwithhope.com.

We'll take a look and see what we've been doing. But our caregiver tip of the day is push back against the isolation. Push back against the isolation.

Isolation is one of the toughest issues that caregivers face. And Rob, you and I have talked about that a lot. I want to, since you're the eldest among us. So I got that going for me, which is nice. You remember that, Peter?

Yeah, Caddyshack, which is nice. On your deathbed, he tried to stiff me. You and I have talked about this many times.

And you've said one of the first things that happened when Jonah was born. Oh, I know what you're talking about, isolation. And what you guys felt with the isolation.

So talk about that. Well, you know, when you said isolation, I wondered exactly what kind of isolation you're talking about. But you feel like when you have a problem like that in your family, at least we did, we felt like we were the only people in the world that had that problem. You know, we didn't know anybody else. And so that was the shock of it.

And you start dealing with it. And then we didn't feel like we were part of any kind of a community or getting help until we found the Kennedy Center over here, which is mainly for kids with Down syndrome. But they had kids with a lot of other stuff too. And then Jonah and then my daughter Lacey went down. There's a role model. She was two. Jonah was five. But for the longest time, man, we didn't, you know, it's like nobody could tell us anything. We didn't have any. This was in Nashville, right?

Nashville. Yeah. So no doctors came to you and said, Hey, here's a program. When Jonah was born, I went to the doctor that delivered him and he always severe problems. And I went to the doctor a few days later, told him, said, I'm not sure what to do here. And he said, just take it home and love it.

That's what this genius told me. It, you know, it, yeah. He didn't, he knew nothing about, he'd never delivered a child evidently with serious problems before. Then later on, we, we met the doctors at Vanderbilt, who was the high risk pregnancy doctors. They were wonderful. But then in between then we, we finally found the Kennedy Center over here, Peabody, which became part of Vanderbilt and, and met other people that had kids with problems.

But until then, man, it's, you know. So in that isolation that you felt, I mean, you felt literally alone. Well, we didn't know anybody. Jonah had serious physical and mental problems. And, and we didn't know anyone that had any, like there's a lot of kids out there with problems.

You just never see them, you know. What were ways that, that you were able to push back against it or were you? We weren't. Actually, you know, I mean, we'd thought about moving to California or something, cause I wasn't really country all that much at the time. And we can't go. We finally found Harris Hillman school.

There wasn't any way, Peter, we didn't know. Let me back up a little bit. Rob's been a long time producer, musician here in Nashville, worked on, I don't know how many records, Kenny Rogers, Ronnie Millsap, just to name a few. And been doing this for years. Greg is a long time songwriter, musician, been in bands since the sixties. In fact, we were coming up here in the studios and see all these bands today with their long hair and everything else. And I said to Aaron, I said, that looks like your dad.

And Greg said, no, my hair was much longer. It was a different time then, but, but it, but so you were, you were in the music business and you weren't that locked into a country music path. So you were thinking about taking it on the road and going to LA with it, where there'd be better music.

I was involved in more back then it changed about 10 years later, but back in the eight sixties, early seventies music I was involved in was more R and B rock pop type stuff in one country at all. And I thought about, but we, you know, I never really thought never made plans to move out to California. And I'm glad we didn't because I'm Southern boy born and bred, but it's and then after Jonah and we've made some ties here in Nashville, then we thought, well, we can't go.

We're so blessed with what we did find between the Kennedy Center and Harris Hillman and one thing or another, but it was, yeah. When you first have a child like that, man, you, you know, if you don't have anybody, you know, to commiserate with and talk to and help you then it's, it's, it's tough. I don't, I don't, I don't, you know, I told people, man, I wouldn't want to go through that again because heart, one of the hardest things they went through in my life. I wouldn't, I wouldn't wish that on anybody, but it enriched my life more than anything else. It made me put things in perspective, Jonah's life did. And it was, it was tough, but when you look back on it, you know, it, it, it just made you realize what's a lot of things that are important and a lot of things that aren't important. And it was, it was a huge blessing from that standpoint. He blessed a lot of people, but it was a tough one.

Well, Greg, isolation, same thing. You had a, you had a difficult diagnosis as well. Well, they didn't, our doctor didn't say take it home, but he said, in fact, he said, don't take him, him home, just leave him with the state and they will care for him until he expires. When Aaron was born, the life expectancy of Down syndrome child was 25 years. When Aaron was born, the life expectancy of someone with Down syndrome in the United States was 25 years. And that's because parents were advised to take their children or take their babies, leave them, leave them with the state, not just the state of Minnesota where Aaron was born, but all the different states.

I've heard this from many, many parents. Aaron, lean a little close to the microphone and tell us what was your, you just had a birthday and how old are you? I'm 40 years old. 40 years old. And you have defied the odds, haven't you?

Yes, I have. Well, now the life expectancy for someone born in the United States, one in 700 babies is Down syndrome. And the life expectancy is 60. And that much improved from 25 to 60 in a 40 year period is because parents are no longer advised to leave their babies with the states and with the governments. And they are cared for much better. You must've felt terribly alone as well.

Completely. We had no idea. We didn't know anyone with Down syndrome.

We didn't know anyone who was familiar with Down syndrome. And we lived in a small town in Minnesota where the weather was not conducive to anyone with Down syndrome. And so we moved to Nashville because of Aaron. Why Nashville? Well, because I was involved with the music business in Los Angeles before I moved to Minnesota. I was still involved with it long distance and had friends who were moving here to Nashville at that time. And I also was raised with Southern parents and I felt comfortable with Nashville.

And the weather in Nashville was much, much better for Aaron. Peter, if people in their 50s, 60s, and 70s could have children and had a Down syndrome child or a child with handicap, any kind of challenge in any way, they'd be a lot more aware of it and not shocked as much and know how to handle it more. But you're 20 years old, 20 something. The whole world, you're just out of colleges and the whole world revolves right around this.

And you don't know that. How old were you when Jonah was born? I was 29. Mary was 28.

I was 30 when Aaron was born. So you were very, very young, very, very alone. Did you have a good church situation around you? No.

No. Yes, we did have, I don't know about good, but we did have a church situation around us. But they didn't know how to react to it either.

No one knew what to tell us. We're going to talk about this a little bit more. This is Hope for the Caregiver. And we are on a mission to punch against that isolation. That's our caregiver tip of the day is to punch against that isolation.

That's why this show exists. And we're glad you're with us. 800-688-9522.

We'll be right back. Here's some great news. If you missed the deadline to sign up for health insurance, or if you signed up for a plan you're not happy with, you still have a choice. MediShare is a health care sharing program.

Hundreds of thousands of Christians are part of this. It can save you a lot. Typical savings for a family is about 500 bucks a month. You can join MediShare anytime. It's easy to call and look into it.

There's no pressure at all. And man, what a difference it can make. 855-25-SHARE.

That's 855-25-SHARE. 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. Really it's a show for caregivers. You need some energy man come on. Do I really John?

I mean there are people out there right now who are struggling they're weeping and then you play this stuff and banging their head against the wall. Welcome back to the show For Caregivers About Caregivers hosted by a caregiver. I am Peter Rosenberger along with the Count of Mighty Disco and we are here to bring you three decades of experience to help you stay strong and healthy as you take care of someone. Three decades. Three decades well actually in the room today we have 100 plus years of experience.

100 plus years because I have something else. I have three gentlemen here who have logged in a lot of time and 800-688-9522 if you want to be on the show and I'm joined by Greg Tornquist his son Aaron who is here and here Aaron's getting ready to do his big moment here. You about ready Aaron?

I'm ready. Okay all right and Aaron is here to help bring a little bit more awareness to Down Syndrome because that's what this month is October is Down Syndrome Awareness Month. Aaron is 40 years old he is amazing young man and he's dressed you can't see if those of you watching on Facebook live Elvis went Elvis 56 is what you went with today right?

Yes I am today yeah. Elvis 56. No he is a very serious Elvis now you don't call it impersonator what do you call it? We call him ETA it's a variation for Elvis tribute artist. Elvis tribute artist it's not an impersonator ETA because you're TCB with ETA. It's ETA.

Right but you're TCB with ETA you know what TCB is don't you? Taking care of my hand. There you go all right. And I got to call attention to Aaron's shoes by the way he's got on these beautiful white wing tips just stellar. That was a birthday gift for your 40th birthday and you are rocking it man 1956 Elvis and then I'm also joined by Rob Galbraith a long time producer songwriter musician extraordinaire and just a great group of guys who have logged in some serious times as caregivers and we put in the miles the three of us have and we've got a few things to talk about as usual in this segment right now we go to our other spot that we have Aaron you're going to set this one up because this is very important to your dad because he's 70 now.

I know that. So you want to tell us what what this next segment is you got it? Today's. Today is a senior moment. Today's senior moment brought to you by Morning Point Senior Living and Memory Care Center. Are you liking my show Rob? Is that Hank Jr. or George? No that was George. Today's senior moment brought to you by Morning Point Senior Living and Memory Care Center morningpoint.com p-o-i-n-t-e. I just got to host a great event with them the other night where they had seniors got talent and it was a lot of fun and but the today's senior moment our little thing we want to talk about is check your apps check your apps check your bills sometimes we forget that we leave things going and we're paying two dollars here four dollars here you know the cable company is just keeps hiking things up and we don't bother to check and guess what we're just having money just fly out the door and so if you got it and you don't care about it don't worry about it but if you need the money check your apps on your phone because those little two dollar things will add up after a while don't they just they absolutely do add up and another thing is even if it's not something that is a subscription service or something like that if you're on a limited data plan if it's even if it's free if it's sucking up data and you don't use it you're ending up spending that money elsewhere as well and you don't need to be doing that so if it's if it's a useless app if you're if you find that you haven't you know been using it in the last month or two maybe think about deleting check your cable bill check your home security bill all those kinds of things I know that my my sister-in-law went through my folks with it and they had I don't know they had just enormous amount of little fees here and there they were doing they weren't even using it and it was just money just going out the door so that's our senior moment today's senior moment Aaron senior moment for today that's it you did a great job all right 800-688-9522 we're talking about isolation today and we're bringing some tough topics but we're all grizzled veterans around here we all have arctic blonde hair speak for yourself except for john john's the baby in there just but uh arctic blonde arctic blonde is the hair color today for those of you watching your senior hair color of the day is arctic blood brought to you by but if you want to watch also on facebook live you can go out to hope for the caregiver on facebook live and I'll put this out on our youtube channel a little bit later and we the caregivers suffer from three eyes and I'm gonna let you guys unpack this a little bit as a show unfolds we lose our independence we become isolated and we lose our identity Greg did you did you feel you and I've talked about this and you didn't think about it in those terms until afterwards and you kind of look backwards over your life and realize oh man that's exactly what was going on actually you're the one who turned me on to that Peter to the three eyes and it just made perfect sense I did feel like I would like I would I had lost my independence I mean it's not something you recover if you're in it for life and I'm in this for life you lose your independence but when you do that the your identity does change and as you become isolated which also happens whether it's from the beginning like rob and meryl or it was for us it was when you lose that it's it's hard to know what to do and you've been a big help to me actually with your book and well let's talk about this after the break unfortunately we got to go to quickly to the break here stay tuned with that because I don't want you to I don't want to lose that theme this is hope for the caregiver 800-688-9522 we'll be right back here's some great news if you missed the deadline to sign up for health insurance or if you signed up for a plan you're not happy with you still have a choice metashare is a health care sharing program hundreds of thousands of christians are part of this it can save you a lot typical savings for families about 500 bucks a month you can join metashare anytime it's easy to call and look into it there's no pressure at all and man what a difference it can make eight five five twenty five share that's eight five five twenty five share 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 gana 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 the show for caregivers about caregivers hosted by a caregiver this is peter rosenberger bringing you three decades of experience to help you stay strong and healthy as you take care of someone who is not 800-688-9522 are you already standing on the ground and that's the uh that's that's a good place for us as caregivers to kind of just catch your breath that's what we do on this show is is we we take we we build a well-lit path to safety where you can catch your breath take a knee if you need to and then get a little bit re-oriented let's start developing some healthy strategies and i've got a couple of guests here several guests here in the studio with me today erin tornquist who is uh 40 years old bringing awareness to down syndrome awareness month for us and i'm grateful that you're here erin he is he is rocking uh the 56 elvis look because erin is a elvis tribute artist not an impersonator he's a tribute artist and he has uh he's taken how many times have you been to graceland erin well i first started going to graceland about 16 years old and that was 24 years ago yeah i've been going since then and you you and your girlfriend you you have a lovely woman friend that you yeah i have a girlfriend i love my life and her name is nicole's um the same girlfriend for 25 years does she like going to graceland with you oh she loves it yeah okay she doesn't dress up as priscilla though no okay erin's serious oh he is this is i asked greg i said does he have a suit he said no no suits oh yeah i do have a lot of suits yeah what's your favorite one i like the one he did wearing them back in 56 i got that one i got a state suit and i want them back into 70 suits he expects you to know that what colors those are peter you know erin knows exactly what year it was i'm at a loss but i'm gonna roll with it baby um and your dad is here with us uh he and i have talked many times about this this issue and and i you guys have and rob galbraith you guys bring a lot of hard-won experience and there's something about a couple of decades into this that really provides some some wisdom and some insights so we're going to talk about today but first we're going to take a quick call uh from susan uh susan is a teacher you have student with you have a student with disabilities susan you with us i am well good afternoon how you feeling i'm feeling great thanks so much for taking my call i really appreciate it well you're certainly welcome tell us what's going on in your classroom well i'm actually a sunday school teacher and i have a lot of curriculum that i've covered over the past few you know i've done this for several years now and the curriculum a lot of times will have things like you know for fourth and fifth graders um a picture of a child in a wheelchair and the lesson is you know make sure to include everybody um persevere and of course you know most of the kids who are in my class all of them they all can walk they're not in the wheelchair so it's always been a fine lesson this year however i have a student who is in a wheelchair and i i don't know how to do these kind of morality lessons where they use an example of a child in a wheelchair so i i just wanted to kind of get your your take on how how old is the child so she's in fourth grade does she have cognitive impairments or just mobility um she her reading and her writing uh level is about a first grade she's in fourth grade so her her reading and her writing level are you know delayed um but she's really excited to be there she wants to make friends um she wants to be included and she participates so well i've got i've got two dads with with uh sons who have dealt with special needs and so forth i want to toss it to one of you guys you guys want to i would say just err if you're gonna if you're gonna err err on the side of kindness and normalcy like you say you're trying to include them you know they may be all the way up to speed on everything but uh i think a lot of those kids like being treated like normal as opposed to like they're you know hindrance or something and i think if you just err on the side of normalcy and kindness you'll be all right well and what about what about as a father how would you want the child treated not just as what the kid wants to be doing but you're also you got to remember the parents want the kids to have a safe place to go and not be singled out and be an object lesson for class that's why i say normalcy just like you're including them into all the functions as best you can and uh you sound like a kind person so i wouldn't worry about you too much and uh i think i would uh suggest something that's not opposite of that but it might be thinking outside the box a little bit and that is if i mean this this girl is going to be there week after week and the other kids are going to get to know this girl but it might be an idea i don't know if this is possible because i don't know the situation with the wheelchair exactly but i would maybe you could get another wheelchair maybe you could get two wheelchairs in there and have one of the and have the another child sit in the wheelchair or maybe have her if she can sit in a chair and have someone else sit in in her wheelchair and get an idea of that and just deal with it one time maybe that doesn't have to be on ongoing but just one time where you just take on the issue of what it what it is to be in a wheelchair because it's different and and rob's right the normalcy is how the child wants to be and how the father would want to be but it the there's a reality there that needs to be dealt with and the kids are smart they'll be able to get that and i don't know if there's another wheelchair in your church or or if this girl could be taken out and put in she could be in another chair and have somebody just sit in that chair for a minute and get a feel for it it's just an idea and also susan it may be a good idea for you to sit in the wheelchair and let one of the kids take a stab at pushing you around the room uh you know today's world is a little bit different in that we are a little bit more familiar with disabilities but gracie has told me often when she grew up she had severe eye problems long before she had her wreck that that did so much damage to her body but she had she had to go to school with the patch over her eye the kids would kind of make fun of her and that kind of stuff and i think that you know she was okay with explaining it the first time but she didn't want it to be an object lesson every time she went to school to have to explain the patch or now when she has prosthetic legs yeah yeah you can ask her about her legs but you know after a while she gets tired of asking about her legs she wants you to ask about her and and so uh the the the disability doesn't define the person it's a part of what they have to live with but i think the more you just have just a if you normalize it and realize this is just life i mean it's just part of it it's not something we all have to freak out about and have some kind of uh sensitivity training too we just live life uh does that does that kind of track with you a little bit it does i mean we have you know there's kids in my class who have divorced parents i mean this is the catholic church and of course you know we have lessons about marriage and that you know you don't get divorced so it probably is just sort of handling those lessons about including everybody even kids in a wheelchair sort of the same way that i would with i think with the divorce issue i think one of the things i'm i'm on a mission to do is help the church kind of keep up a little bit when you deal with this because i don't think the church has really known how to to um the institutional church has known how to to walk into these things without just feeling like they're walking on glass or egg shells or something and i say you just go in there and just have the conversation just normalize it you don't okay my wife doesn't have any legs you know we're dealing with down syndrome or we're dealing with this it you know after a while okay if if somebody's that hung up on it then they got the problem not not me and they're going to have to work that out but they have to work it out on their own time not at your not at this child's expense and not at this family's expense i think what we heard earlier from rob is that you know they were so lonely they didn't have anybody greg that it was such such a terribly isolating thing that they don't want to be the test case for everybody to learn how to deal with this just just be family be just be just be you know one thing i found i don't know how to help susan but you went through peter what'd you say that was john okay uh one thing that helped maryland i get through it was humor you know and i know of all people peter is probably the worst of that as far as you know just jerry bless bless bless jit crazy hard never makes anyone laugh yeah but but you know when you have somebody with serious problems like that man sometimes i mean humor helps us get through it because you just got sometimes you just got to laugh yourself well you do and in situations and uh john said susan you had something a little bit more specific you wanted to address um well uh you know it's just these i i don't want to objectify it i don't want to objectify this girl i don't want her i don't want the lesson to be about look and there's this girl in this picture and she's in the wheelchair and then my students sitting over there feeling weird or dumb or i just i don't want to make it susan one of the ways that i handled that with aaron and down syndrome earlier in his life was when he asked about it i'd say okay you do have down syndrome but this person has red hair and this person has no leg and this person has something else and everybody has something yours is down syndrome and i wasn't trying to sugarcoat it i'm not exactly sure where you're going with with the objectifying but um i don't think it has to be a sunday school lesson each week no and i think that that's what you want to do is eventually okay the novelty of it of wheelchairs and prosthetics and down syndrome and everything else the novelty of it kind of wears off after a while yeah susan i would say you know don't overthink it you just you sound like a nice person you're probably worried about it too much just you know do what feels natural to you and just treat the child normally and let them be part of the group and uh they'll fall in their kids will take care you know kids will handle that well i make an effort to let the parents know that that the kid is safe and not being singled out for object lessons or whatever that the kid is we're just going to just we're just glad to have your kid here with us and i guess that was my my question was uh do you guys uh think that she should uh she should reach out to the student and parent about this would that be a good or a bad thing i don't know that's you could ask their advice i guess you're not going to hurt if you have well you can ask you what what are their concerns if they have any special concerns that they that you could address and that way but but engage with the parents and so that the parents know this is a safe place for that child to be scissor is this child is there an option for this child i mean we were just so thankful when john was in some school that he had somewhere to go that they cared about him this child is like a is it happy to be there or or is she it's a little girl boy would they happy to be there and if uh or do they have somewhere else that they they uh would be if they didn't you know if they couldn't make it at this place um well it's it's our parish it's you know where we all live and so i keep thinking this church i keep thinking excuse me and when you're catholic you either go to you know private catholic school and you get your religious education there if if you don't go to catholic school then you go to sunday school it's a requirement yeah and so this is something that that she has to do and she seems really happy when i when i called the parents they even said wow this is the you're the first person that's ever called us i mean when we took jonah when he was about three or four we started going to this one church and the one guy that was kind of in charge of the sunday school there he was really nice but the people in the church they didn't know what to do with being around a child like that and then we went to st bees and susie florida people designated somebody to take care to look after him each son to be a different one and we felt so included and that and you know that they were so nice about it and eager to help that that's why we were there 20 years well greg you were going to say well i would just echo what rob said about not overthinking it you're doing that you just said you said a book full when you said the parents said you're the first one that's called you know that me that's i mean that's what he said about being a good person about just reaching out be treating normal not objectifying every week but at least dealing with it one time with the other kids where it's real and uh and then that's it and then you know everyone has something this child has that to deal with you know when when my kids were growing up kids are pretty resilient and my kids were growing up and when their mother became an amputee you know they didn't really make a big deal about every day one time there was a deer in the yard and parker comes running in he was just a little kid and he said mom get your leg on we gotta come see this thing you know it just put your leg on mama come and see this thing but you know kids just kind of adapt and so the best gift you can give to that child to that child's family and to that classroom and to the parish itself is to integrate the whole dynamic with it and just let it be just they're just normal it's just we got adaptive equipment we got special needs okay big whoop and and that's how you do it it's not that like rob said you just don't want to overthink it too much yeah you could be worse you could have like a personality like peters oh yeah what are you gonna do about that seriously i've been causing sunday school problems for years uh only person i know is a sit to the superintendent of the sunday school i mean do they even have detention in sunday school so uh that's a question i don't know that's uh that was my life so hey listen susan thanks so much for the call just for the dialogue we're having and we hope this has been helpful i want to give a big shout out to uh my friend robbie dillmore over in north carolina because i know this is an issue that is deeply passionate to him and they're listening over there in the winston-salem area and uh working with an awful lot of special needs families and this is something the church can and must do if you miss the deadline to sign up for health insurance or if you signed up for a plan you're not happy with you still have a choice meta share is a health care sharing program hundreds of thousands of christians are part of this it can save you a lot typical savings for families about 500 bucks a month you can join meta share anytime it's easy to call and look into it there's no pressure at all and man what a difference it can make eight five five twenty five share that's eight five five twenty five share 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 gana 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 god he stumped me with that one that's a journey okay welcome back to the show for caregivers about caregivers hosted by a caregiver with theme music today that really means very little to the caregiver world but evidently the count of mighty disco is firing on all cylinders in there so we're thrilled to have you back 800-688-9522 this is peter rosenberger we're just glad to have you it's been a very fast hour i've had aaron you've been back for your uh your your encore performance here on the show and we're glad to have you with us to talk about down syndrome a little bit and i want to tell you something aaron okay that your father said to me and and this is aaron tornquist for those who now join his father greg is here aaron is 40 years old he lives with down syndrome rob galbreath is in the studio with us as well but uh uh greg and rob are long-time musicians here in the nashville scene and they've dealt with uh special needs as fathers and but aaron i was talking to your dad about you okay and he said aaron is a wise man that's what he said about you now pretty much every guy i know wants to hear that from their dad and so as you think about that with your dad saying that about you and all the challenges you've dealt with with down syndrome things you've had to not be able to do and participate i know there's things that you want to do and you can't do them very well and so forth as far as driving and things like that that frustrates you but your dad says you're a wise man yes i am okay there you go all right how does that how does that how does that make you feel as you look at your dad you guys have been through some some some rough rivers together well yeah i've been my dad for 40 years and i have what i was born in minnesota when my dad said about when down syndrome people can't survive out there minnesota and i was about four years old and i graduated from harrisboro high school and you got an award there didn't you yes i did what award was that well it's the best courage for people with down syndrome to get that award it's called hallmark actually yeah it was the hallmark award for graduating student with the most courage it wasn't for down yeah it was just most courage the entire student body and at the time hillsboro had a fairly large graduating class a big surprise for us but uh aaron is wise and he's also modest well aaron i think that i think there's no higher praise that you can elicit from your father from any guy from his father than your father to say that you're a wise man so well done young man well done yeah when i when my parents came to the studio last year we're talking about the realist mumble down syndrome experience i have this experience with my girlfriend who i have been with for 25 years i know her for a long time when i first heard about um my dad's and he said to me i'm the camera he's my dad's a caregiver i'm the care receiver and my first time at vaugh my first kim tennessee i came to his concerts when i see him play he did a great job on that he's pretty good isn't it yeah he is for for a man of his age and limited abilities he does all right especially when people can't see me right now what i'm wearing is the stuff i'm doing i'm doing the legacy of elvis that's what i'm doing the legacy keeps his music alive well you're doing a great job with that uh greg parting thoughts we got just about a minute or two left of it really not even that much but just real quick well i think i'll take away susan's call and her concerns about this child in a wheelchair and and hope that she and some of the other listeners were able to benefit from what we suggested but it's it's an example of how individual each situation is and how challenging it is we have a we have a mandate as as believers to the sick naked hungry prisoners and there are a lot of subsets of that and and i'm on a mission to help equip churches i know how to not just minister to the child with special needs but the whole family the family wants to feel belong this is two guys that'll tell you that rob last last word rob i'm just saying about the you know i'm talking about being out in public and whatnot and people being used to being around folks i remember when i'd be out with jonath people who stare if i see if i see someone if i'm out in public and i see somebody's got a child with problems i always just try to treat them real nicely say hi to him or something and not and just engage engage you know just like they're folks you know they feel they just don't want to be you know like uh you're talking about the thing there in the elevator off the air there but anyway it's too big of a subject to to me to encapsulate in any one one sentence so i just just engage just engage push back against the isolation good word yeah well listen this is hope for the caregiver i'm peter rosenberger thank you guys for showing up today we're going to do it again we'll have some more fun with it if you want to hear this uh we're going to put it out on podcast everything else standingwithhope.com standingwithhope.com please get involved in what we do and i think you'll love being a part of it we'll see you next week
Whisper: medium.en / 2024-01-21 20:27:08 / 2024-01-21 20:44:53 / 18

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