35 Burst results for "Down Syndrome"

NYC Diner Owner Files Lawsuit, Refuses to Comply With De Blasio's Vaccine Passports

Mike Gallagher Podcast

03:05 min | 2 d ago

NYC Diner Owner Files Lawsuit, Refuses to Comply With De Blasio's Vaccine Passports

"Kellogg's diner in Brooklyn, New York is legendary and the owner of Kellogg's diner has decided enough is enough actually she's been pushing back for a while over these insane mandates and leaders elected officials telling people how to live their lives under the guise of welcome on our guest line. Irene syndrome is hiring boy oh boy, you are up against it. You decided to sue Bill de Blasio. You talk about mister smith going to Washington. How about Irene taking on the mayor of New York? I have to. I need to feed my children, Mike. I have to do what I can do to protect my family. You're a single mom of four children and these crazy mandates and restrictions that have put restaurants in the New York City area through such agony. And I've watched it. I witnessed it last winter. I couldn't believe it with people trying to put tense out in the streets with karashi heaters. This whole thing has been a nightmare. So walk us through your story, Irene and tell us why you're challenging New York and tell us how these requirements have impacted Kellogg's diner in Brooklyn. So I first want to let everybody know that I'm not against of this vaccine or any vaccine that can save lives. But I don't want to be forced to take this vaccine or force anybody to take a vaccine. They don't want to put in their body. Now, these mandates, like you asked me, what have they done to me? The first man dates there was no protection put on us. So once these lockdowns were taken off. We started getting suit because we defaulted in our contracts. We couldn't afford all these big rents that we had or these mortgages that we had because we had no business. We were only doing delivery and takeout. We weren't doing the volume that we normally do on without a pandemic happening. Nowhere near it. We're even close to that. All we could afford at the time was food bills and payroll, and if so, like, it was horrendous. I didn't have the option to put tables outside. Very little. I had a little driveway. You know, I'm on top of a train station. I'm on a corner that is so dangerous and intersection. So I didn't even have that option that others also had to even, you know, do some business outside. Right. Everything was just take out and delivery for me. It was very difficult. I now face 1.4 judgment. Against

Kellogg's Diner Irene Syndrome Mister Smith New York Irene Brooklyn Bill De Blasio Kellogg New York City Mike Washington
The Media Is to Blame for Kyle Rittenhouse's PTSD, Need to Relocate

Mark Levin

01:21 min | Last week

The Media Is to Blame for Kyle Rittenhouse's PTSD, Need to Relocate

"You know Kyle rittenhouse is going through treatment for traumatic syndrome And his lawyer one of his lawyers said this evening that he probably will have to move To another location that he's had threats made against him Again you can thank the American media for this The corporate media It is a it is a poison on this country I want to thank those brave young men and women who've covered Black Lives Matter and antifa who have gone into the teeth of these battles and these riots were the vast majority of the hosts sit on their fat asses In Washington D.C. and LA and New York These young people get paid next to nothing They go into these places they take real live on the scene video do interviews so clowns Like Nicole Wallace so clowns Like Joe Scarborough so clowns Like Andrea Mitchell so clowns Like chuck tied an on and on on the list is infinite Can sit back and give their opinions These fraudulent phony journalists

Kyle Rittenhouse Traumatic Syndrome Washington D.C. Nicole Wallace LA Joe Scarborough New York Andrea Mitchell Chuck
"down syndrome" Discussed on The Latched Mama Podcast

The Latched Mama Podcast

04:55 min | Last month

"down syndrome" Discussed on The Latched Mama Podcast

"Do i need a special pediatrician for my baby. If they have down syndrome so that might be something that our listeners might might wonder no. you don't we go to a wonderful pediatrician. Who they have you know a large practice in this area and they don't have any specialized knowledge. One of the things that i've loved about mine is that they they are open to learning So any information. That i provide them they are they look into it. They they learn they research But no you don't have to have a special pediatrician at all But you do have to be willing to advocate. And that's one of the big things that i Stress for anybody. That has a child with down syndrome. You know your child the best and you are their strongest advocate. So you know speaking up for them because you're their voice when they can't be We talk about that a lot. Actually on this podcast. Odd advocating for yourself. If it's you know maybe during your pregnancy or early post-partum days advocating for your children for what they may need So i love that. You're driving that point home. Yeah because you are the one that knows them. the best. you know what's typical. What's not typical. Yes what they need well and often one of the other issues that you can find with down syndrome is delayed verbal skills. My daughter nora can speak and most people can understand exactly what she's saying but she doesn't necessarily speak in full sentences in less we make her which we're working so they will often not useful sentences or some children just may be non verbal completely at this at the same age. She is And so really you do end up being their voice to help them get whatever it is that they need and to kind of navigate situations okay so similar to the pediatrician..

nora
"down syndrome" Discussed on The Latched Mama Podcast

The Latched Mama Podcast

04:06 min | Last month

"down syndrome" Discussed on The Latched Mama Podcast

"One in a thousand children are born with down syndrome. And it is it actually. There's three types of down syndrome. The first type is the most common type. And that's like ninety five percent have this and it's called trisomy twenty one meaning that they have a third copy of the twenty-first chromosome Another type is mosaic. Meaning that they have the the extra chromosome on but it's not in all of their cells so it's in some of them and the amount varies per child And then there's a type called translocation. Which is the most rare form. Meaning that part of their twenty first chromosome has broken off and attached to another chromosome so Like i said the most common type is the trisomy twenty one and that's what most people think of when they think of down syndrome And it does have certain characteristics that everyone who has it shares They do have an increased risk for some Health conditions heart defects is one of the most common Gi issues They do have an increased risk of some cancers they also frequently have hearing and vision issue. So you'll see a lot of people with down syndrome wearing glasses. Some may need hearing aids but for the most part a lot of the things that affect them also affect many people within the general population. So a lot of the Advances in medicine that have helped the general population with those issues have also helped people with down syndrome and said their life. Expectancy has just an increased over the decades. You know even within the past fifty to sixty years. The life expectancy of someone with down syndrome has increased by decades. Used to be that ten was the life expectancy But now there are people with down syndrome living into their eighties. Oh wow okay. Yeah yeah he is about the norm but there are people who live into their seventies in their eighties and a lot of that has to do with increased access to medical care as well as just improvements in just medical care across the entire population. Yeah so some of those issues that you mentioned. Were you aware of those when nora was born or are these things that sort of come about as time goes on you. Learn some of it. Because i'm an educator. I did know somewhat about down syndrome when she was born. I of course didn't know everything But i did know some of the things. Like i was aware that heart issues could be and present and i also knew of course about the cognitive and intellectual disabilities aspect of it. But you do you learn a lot. And one of the ways that i learned a lot of. This was through the down syndrome association of greater richmond. I was blessed. When i was in the hospital. Delivering nora that one of my labor and delivery nurses was a mother who has a child with down syndrome. And she When they gave us our diagnosis she came and spoke with me and encouraged me again. We didn't know beforehand so this was brand new information a lot to process And she came and spoke with me and encouraged me and then she told me that she was involved with diaz agr and asked if she could put me in contact with.

cancers aids nora down syndrome association of g diaz agr
"down syndrome" Discussed on The Lucky Few

The Lucky Few

08:00 min | Last month

"down syndrome" Discussed on The Lucky Few

"A knife in my company. So good news in your family. Let's go the news as a gay she. Finally i call her my my name for her so excited john. Clay will pack to car. I'm john john bit funny but that's interesting. What's what's your order for your sisters. You have so. I'm one of three girls. You're one of three girls. Are you oldest middle youngest. Where where you out. In the reporter we otis inmate Okay and souza's the middle suzanne. So exciting wins the wedding. Is there no yet. I'm just helping out with my sister to go out the all edges. I love marriage. I like to after the plan by the way. Did you for the ready. Set this fear happy. You love to celebrate people. Adm remember when your friend. Katie at christchurch was through her. A baby shower. I love it the staff. She got balloons and cupcake sense. Yeah celebrator of people. Such as you're the boss lady you're the sunshine boss lady sunshine spreader boss lady. You should make a t shirt that says that shirts. I'm under sunshine slots we are davis's are too. I don't. I should've worn t shirt test. I didn't think that through the morning routine this morning. Getting the kids out. The door was distracted. There's going to be merchandised. Also all people who love trista and her message he had from time to house. Tell us out so everyone listening is going to need to buy. Want want to buy your products also dear listeners. It is october. But that means christmas is right. Around the corner and hanukkah and kwanzaa and all of these reasons to purchase gifts for people. And there's no better way to support people down syndrome than to support their businesses. That's amazing and i mean there's no better way there's other ways but what an amazing way to support trista in the work that she's joined by supporting her business trista. Where can our listeners. Find you and purchase your products. Go on my website. Www dot trista son come dot com perfect. But that's the website and on instagram. How can people follow along. Follow our jason chunk company on insulin and you see house stuff guy. Slight pig resit. Ooh i want that run any Makes it easier on. You found say. Ooh i want that. Because quick limited editions right. But yeah and then you're trista the barista answer and listeners. We will have links in our show notes on the website. The lucky few podcasts dot com. Also right here if you're wherever you are on your phone or whatever you're listening to there should be linked to all of those things on your website on our. All of those links should be available to easily website or through wherever. You're listening Okay i guess we're going to start wrapping it up but i'm just sat anything. We missed anything else. Are you still. are you. Tell us about dancing. Piece of hip hop dancing. If perot i'm not so much to lose do there's a big bet this weekend. Remember lettuce Doing the special olympics guys. you Coming that where's that in the The charleston marriott at marya what what kind of role. You're going to help them with it. What are you gonna do. I'm gonna be onstage in my friend. sandy She student allow buyers. You need someone to help guests. I'm special guest to have my sally in calculating for also fought Have you had any trips lately that you went on because you're in the world rally to go to utah offend had again is I love you talked identity. Utah i can be. Are you allowed to say why went to utah. Because her might busy. Snap ed timmy. Rv stars anthony Expressed amazement comments. We got to go on a influence trip together. Which was all the dreams coming true and it was for. byu tv a christmas special coming out in december. Keep your eyes peeled because we are in the audience. Maybe you'll see us but we'll follow if you're following along also on instagram account. She'll be posting and sharing more about that and that was a really really fun trip. I'm glad you got to come. Yes i hope. There are many more influence or collaborations in our future. Dear trista also listeners. All of the people she mentioned like cindy eckert there. We're going to have links to all of those accounts as well so everything that dimension will be. You'll be able to find it okay. We're going to start to wind things down here trista and robyn. Thank you guys for joining us so much for having us. What an absolute thrill before we leave. Trista shared her good news about her sister and that engagement. And that's very exciting. We also have some good news from a listener. The says elba's one who says at drew's first high school cheer camp at oklahoma state university. She was nominated for the ncaa. All american cheerleader for her spirit and enthusiasm also awarded the pin it forward award for setting a good example for what cheerleader should be. I was so nervous about the experience for her and she absolutely rocked. It is some awesome. Good news thank you for sharing. So you're familiar with cheer. Cheer life as well right. that's awesome. That's a that's a really good news. Thank you for sharing that in. Thank you listeners. And friends for joining us. We love to hear from you. Hear your good news. You can leave us a voicemail or you can give us a direct message on instagram. And you can share about your family and your good news about your weapon with down syndrome or if you have done syndrome some good news that you want to share about yourself also if you have a product or a business that wants to help us shout the worth that people down syndrome and help us support this podcast. We'd love to partner with you and you can email. Hello at the lucky. Few podcasts. Dot com a huge. Thank you again to tristan robin for being with us. Thank you to our editor. Josh davis. Our producer vouch leader. Char sponsor for this episode to all of you listeners. To have shared the lucky few podcast with friends have listened faithfully and continue to cheer us on their ticket to subscribe and leave review on apple podcasts. Or wherever you get your podcast and remember you dear listener supporting down syndrome or use your listener with down syndrome. You are a shadow of worth. You are narrative. Keep an on. We're here for you and we'll be together again next week. Have a good one here mason. He say you can say all the listeners. Thanks for letting me. Hop in into the microphones. Hey listen right here. The hey listeners. Thanks for letting me hop in have then what do you say to everyone relieved in a love. You all like beyond stage..

trista jason chunk john john charleston marriott souza Adm ed timmy otis suzanne christchurch cindy eckert Clay utah Katie Okay davis john olympics byu sandy
'Old Man Syndrome' Can't Excuse Joe Biden's Lying

Mike Gallagher Podcast

01:37 min | 2 months ago

'Old Man Syndrome' Can't Excuse Joe Biden's Lying

"It eleven days afghanistan collapsed. The taliban has taken over. And they're now holding americans hostages. We left people behind. Thirteen members of the military were killed. Joe biden has their blood on his hands. Joe biden has the Strategic failure to answer for to the world. Joe biden lied and nobody is being held accountable for any of it. Nobody is being held accountable. Here was the big lie. This is the most important thing you should hear all day long. This is what biden told george stephanopoulos just a few weeks ago. Your top military advisers warned against trying in this time line. They wanted you to keep about twenty five hundred to they. Didn't it was split. That wasn't true. It was a true. They didn't tell you that they wanted troops to stay. No not at not in terms of whether we were going to get out in a timeframe all troops. They didn't argue against that. So no-one no-one military advisers are not tell you know we should just keep twenty five hundred troops. It's been a stable situation for the last several years we can do that. We can continue to do that. No no one said that to me. Can what a liar. What a liar now. i know. He's an old man and he's got old man syndrome. He might not remember what he had for breakfast. But he's gonna remember if his generals were were willing to let him end this war or not

Joe Biden Taliban George Stephanopoulos Afghanistan Biden
Joy Reid Shadows Gabby Petito's Death With 'Missing White Woman Syndrome'

Mark Levin

01:46 min | 2 months ago

Joy Reid Shadows Gabby Petito's Death With 'Missing White Woman Syndrome'

"I want you to listen to this from joy Reid on MSNBC Monday I meant to get to it but I'm going to get to it now Gabby petito was murdered And they're looking for her murder right now Her ex-boyfriend she happens to be white And so joy Reid notices that above all else A white girl A white girl This bastard joy read should ever ask fired Because she's a hate monger And she's always been a hate monger on social media with gays and others And she's hired by MSNBC part of NBC owned by Comcast Listen to this cut tango If you've been watching the news for the past few days or on Twitter or TikTok you're probably familiar with the name Gabby potato The 22 year old aspiring social media influencer who was reported missing after her fiance returned from their van life excursion without her On Sunday human remains believed to be potatoes were found in a national park in Wyoming An autopsy is scheduled for tomorrow to confirm the identity Now goes without saying that no family should ever have to endure that kind of pain And the potato family certainly deserves answers and justice But the way this story has captivated the nation has many wondering why not the same media attention when people of color go missing Well the answer actually has a name Missing white woman syndrome Missing white woman syndrome You see You all must be familiar with missing white women's syndrome because you're all afflicted with it

Joy Reid Gabby Petito Msnbc Comcast NBC Twitter Wyoming Syndrome Missing White Woman S
America's Children Are Being Developmentally Stunted by Virus Restrictions

The Charlie Kirk Show

01:43 min | 2 months ago

America's Children Are Being Developmentally Stunted by Virus Restrictions

"I had dinner and somebody said i a thirteen month year old granddaughter and she is suffering from something called stranger danger which is a psychological problem that children are now experiencing and they were experiencing before but at record rates because of the lockdowns now. The stranger danger syndrome for babies is that they do not want to be held. They do not want to be around other people. It's called stranger anxiety. Now this this this exists that far before lockdowns but talking to some doctors last evening they are seeing record amounts of young babies and children kobe. Babies they're calling them that are having difficulty interacting with other children because they've been quarantined forcibly masked and their entire childhood development has been stunted. Now there's been a lot of research and a lot of scholarship and study in the power of the first eighteen months of how it could impact the rest of a child's life and especially from eighteen months to five years masking children forcibly we'll have long term effects socially spiritually and psychologically for a virus that does not pose a significant risk of killing them.

What Is 'Left-Wing Ignorance Syndrome?'

Mark Levin

01:25 min | 2 months ago

What Is 'Left-Wing Ignorance Syndrome?'

"Let me tell you something you racist propagandist You bigot let me tell you something On this show over and over again We talk about the madness that's going on in the streets and our inner cities The level of murder that is taking place black on black crime which is horrendous The little black children and babies who are being murdered as they sit in their car with their parents or they're in their bedrooms or they're watching TV with a grandparent and a bullet enters their brain because some jerk some nut job some gang member shot it or that shooting up of a fast food restaurant It's amazing how little this is covered by joy Reid It's amazing how little this is covered by MSNBC and NBC and all the rest of them It's amazing You know what I call this I call this left wing ignorance syndrome And the reason I would argue that so much of it goes ignored is because these are Democrat run cities where Democrat mayors That's why

Joy Reid Msnbc NBC
Federal appeals court to hear Missouri abortion law case

AP News Radio

00:48 sec | 2 months ago

Federal appeals court to hear Missouri abortion law case

"In the latest abortion rights showdown a federal appeals court today will consider whether Missouri can implement a sweeping law aimed at limiting abortions the law would ban abortions at around eight weeks it also would prohibit abortions based on a diagnosis of down syndrome in June a panel from the eighth US circuit court of appeals upheld an injunction prohibiting Missouri from enforcing the provisions but the full circuit then decided to hear the case a ruling isn't expected for several weeks similar laws have been struck down in North Dakota and Iowa Planned Parenthood calls it another troubling signal in a long line of threats to reproductive freedom this case comes weeks after the Supreme Court allowed a Texas law that bans abortions once a heartbeat usually around six weeks can be detected I'm Julie Walker

Us Circuit Court Of Appeals Missouri North Dakota Iowa Supreme Court Texas Julie Walker
The Fight to Save Sunflower Sea Stars

Short Wave

01:42 min | 3 months ago

The Fight to Save Sunflower Sea Stars

"Going to be talking about a veracious sea creature that can have up to twenty four arms and the person will be talking to is. Npr science correspondent. Now greenfieldboyce hainault. Hey there emily. I have only two arms. But i am nonetheless here to tell you about these things. I want all your arms around this story. Tell us about this. Many armed briny beast. Well it's a sea star it. It's one of the biggest in the world. It can be the size of a trash can lid or a manhole cover or something like that. It's called the sunflower see star. Yeah so these things used to be common all along the west coast from alaska. All the way down to baja california in northern mexico. Yeah i've heard of these. I've seen pictures. They're beautiful though used to be. I mean those are some ominous words. It is a grim grim situation. This species is critically endangered. It seems to be dying off. it's just disappearing from lots of places. Some people think it's completely extinct in california and this is a big deal because the sunflower see star is a top predator. It eats animals like muscles and sea urchins and keeps their numbers in check. I didn't realize that the sunflower see stars. A top predator. I know that sea stars though have for years been plagued by disease off. The west coast is that. What's killing sunflower stars to. Yes so this is a wasting syndrome. And scientists can't agree on what's causing it it's hitting more than twenty sea star species since the big die off in two thousand thirteen on both the east and the west coast but a researcher named jason hodan told me that sunflowers he stars seem to be particularly susceptible. Really do kind of like dissolve into a pile of goo. It's why he agreed to try raising them in

NPR Emily West Coast California Baja Alaska Mexico Jason Hodan
Hawaii's COVID Rules Turn South Carolina Family's Vacation Into Nightmare

Mike Gallagher Podcast

06:00 min | 3 months ago

Hawaii's COVID Rules Turn South Carolina Family's Vacation Into Nightmare

"It's called cova derangement syndrome. It has it has been added to the list of derangement syndromes like trump derangement syndrome. And just ask less besson door for my my buddy. Joey hudson was telling me about less this week. Less went to hawaii from south carolina with his wife and kids and i want you to hear his store less. We really appreciate you joining us. Here on the mike gallagher show because when joey told me about your case i thought i gotta share this with everybody. How are you sir. don't mike thanks for your patience. You and your wife vaccinated your sons. Your sons are fourteen and sixteen correct. That's right and they weren't vaccinated so you wanted to follow all the rules regarding did with the hawaii restrictions we can you walkers through what happened when you got to hawaii Yeah well we've got the hawaii. We got up there playing the a section where the steering people make sure they had all the paperwork and everything that they need to pass the their their rules There was no problem with my wife. And i But my two sons they Have the testing done through Hawaii's one of them's hawaii's partners with the supposed to have a twenty four hour turnarounds to the test results and It had to be done within seventy two hours. Seventy two hours wouldn't accept the test results so when we get to hawaii we find out that the lab that hawaii uses Or one of the lots of these several but one of them that they use That we ended up using did not Complete tests and did not upload the results So we're in the airport there and In the hawaii airport. In what we're in hawaii on the big island in this now. So you're on the big island and your and your and you realize now you've got you and your wife have your vaccination cards but your kids test results have not been properly process show now. Hawaii thinks you guys are stuck because you've got two kids without a vaccinate or without a cova test result correct. Was that we so we asked. Well can we just get tested for them. Houston all the tasks are very quick. this is what really surprised me is that they said you can't get a test in hawaii it from out of state you have to leave the state to get a test to come back in. So we they don't they don't they. Don't have the ashes in hawaii. That had those blue buynaksk by max. Now kids we get a fifteen minute result. I'd like to tell you that that we were in tokyo so i couldn't get out to see if they have this. No kidding because this gets worse all right so let's go through this show so you can't get the test there. So then what happens so they tell us. We have three choices. Choices are one to leave hawaii to to go into those ten days of quarantine or three to have. A the governor's office grant an exception in our case. How are you going to get a governor's exception in your case standing in the hawaii the airport hawaii i have no idea i wonder your. Where did you go from the airport. I don't know what happened from the airport. We tried to go to our beach house that we rented for the first two nights before the resort for the rest of vacations right but The airport wouldn't let us leave until they Until they called the beach house confirmed that they would keep us in our beach. House and Make sure that we quarantined. Keep you in like like like house arrest. Like house arrest yes. I couldn't outside and the beach house. They they said they wouldn't be able to do that. And i can't blame them. They don't wanna be sitting around doing that kind of thing right so we have to find the hotel that would allow us to Be under Corentin in their hotel wounded up we ended up getting the marriott And we had improved the airport people there that we have a reservation at the marriott and the marriott would Indeed cheapest room and where. Where are you doing this making all these calls and trying to figure all this out with since hawaii thinks your two kids are like lepers. I guess you know. They've got the blue bonnet plague. What are you guys. Locked in broom closet somewhere in an office. Where are you doing all this. We are behond one of the counters or this is taking place while other travelers coming in and While we were there for about two hours three or four other people with similar issues that weren't able to get her to go to porn teams. Oh so you weren't. You weren't alone and going through this now. There were sort of Well Both with kids and a couple a single individual my gosh go you wind up at the marriott right with your family right how that go. Well not was. That was awful. I'll tell you it was awful Before we got to the marriott no they told us we have a one phone call to try to get with the lab to To get our results one photo giving you one phone. Call one phone call. That's what they told us and we. We ended up having a lot more because my sixteen year olds is autistic. And there's been expecting this trip for Well we're supposed to do it last year. That goes with council the at. He's expecting it for this year He just has a meltdown there in in there and And it was bad

Hawaii Derangement Syndrome Joey Hudson Hawaii Airport Mike Gallagher Besson Joey South Carolina Beach House Mike Marriott Houston Tokyo MAX Plague
Oregon Governor Kate Brown Issues Outdoor Mask Mandate

Mike Gallagher Podcast

01:39 min | 3 months ago

Oregon Governor Kate Brown Issues Outdoor Mask Mandate

"Here's the announcement from the oregon governor. Kate brown today. I'm announcing that effective friday. Twenty seventh mass will be required in all public. Outdoor settings or physical distancing is not possible regardless of vaccination status massa proven to be effective reducing transmission and are unnecessary measure. Right now even some outdoor settings to help us fight coveted and to protect one another alright. Riddle me this batman. How many outdoor activities prohibit social distancing. How does that work. How in the world do you. So in oregon. You must wear a mask outside. And then she adds a caveat. Where social distancing isn't permitted or possible. What does that mean if you're out in the field if you're walking down the street i mean i guess. She means outdoor concerts. Why don't you say that in other words there is unless you're a seat. It's impossible to to not be able to socially distance it's it is coded derangement syndrome. They are making crap up as they go. And every we all know it and it's only these democrat governors who sound like escapees from a mental institution. You're gonna make people wear masks outside.

Kate Brown Oregon Massa Riddle Derangement Syndrome
How Does the Fall of Kabul Compare to the Fall of Saigon?

America First with Sebastian Gorka Podcast

02:28 min | 3 months ago

How Does the Fall of Kabul Compare to the Fall of Saigon?

"Seen numerous exigencies disasters. Emergencies affecting america's national security establishment. Let's start with a simple can palace and katie mcfarland. Follow this lady right now on twitter at real. Kt the lettuce. Kt mcfarland Is it Unwise is it too simplistic to compare the fall of kabul under biden to the fall of saigon. Give us your take on. That comparison was actually in the white house situation room. The night of the fall saigon. I was That was in april. Nineteen seventy five and america had fought and at least fought to a standstill the vietnam war and similarly to today. We were surrounded by North vietnamese viet cong communist forces and were forced to evacuate Our our forces along with any north and south east amis allies. Who had helped us for the vietnam war and it was a humiliating time for america not only had lost a war but we were forced to evacuate and it was a low point of american foreign policy and i remember being in the situation room where i was receiving case. They were called cables at the time. You'd probably call an e mails text messages today. From the van ambassador to the american ambassador to vietnam where he was saying we. We just need fewer hours. We have just another planeload or to evacuate and all the american. All the american military we later found out that what they were doing was trying to evacuate as many as possible of the vietnamese allies that it helped us So it was a low point in american foreign policy and because it showed to the world the face. Agape world was america's incompetent america Can't fight wars and win them. It's the end of time. America's days are done and it fed into the notion that at that time the soviet union was gonna replace america's the world's dominant power and so surely united states turn that around with especially with the election in nineteen eighty of ronald reagan where he rebuilt the american military. He stood up for the united states again. He reinstated american values. He fixed the american economy and within a decade. After that we had one war so we completely reversed that vietnam syndrome and it only took us. Well it took us maybe ten or fifteen years to do

America Katie Mcfarland Kt Mcfarland Saigon North Vietnamese Viet Cong Vietnam Kabul Biden White House Twitter Soviet Union Ronald Reagan Vietnam Syndrome
VP Kamala Harris' Vietnam Visit Delayed by Possible Case of Havana Syndrome

WTOP 24 Hour News

00:32 sec | 3 months ago

VP Kamala Harris' Vietnam Visit Delayed by Possible Case of Havana Syndrome

A Lifetime of Lymphedema

Lymphedema Podcast

03:17 min | 3 months ago

A Lifetime of Lymphedema

"My journey with lymphoma over the past twenty four years has been a complex emotional convoluted just rollercoaster That has occurred as i said before my lymphoma was onset from infancy because of male video. Actually i was emergency. Section baby Since my lymphatic system had not formed properly in the womb all of the fluid in my body had gone to my head. While i was upside down in the womb and because of that i got stuck in the birth canal and an emergency c section operation preceded My dad says that once. I was removed from the womb. My head Resembled a bowling ball So that's nice. Thanks to but upon removing knee and seeing the baby for the first time the doctors were unsure what was going on with me. They thought that. Maybe i might have down syndrome. But just because of the way that i looked but also they were like. Maybe you're just a chunky baby. They just told my parents that i was fat and that there was not much more. They could do in terms of diagnosis. My parents took me home thinking that they might have you know this healthy but fluffy baby And that was not the case because immediately they noticed that all of the fluid and my head had started to go down my body and really gather on the left side of my body and especially in both of my legs and my feet so my legs and my feet were very swollen. My would take me to doctors and the doctors were just repeat. You know. Mr and mrs eggers. You just have a fat baby. But no i actually had primary lymph dima. I was diagnosed at nine months old by dr witty with primary lymphoma and that kicked off a whole life of complex feelings pain managment lots of medical treatments in just a lot of confused emotions. I would say because of my lymphoma Now big things to know about me is. I actually grew up in a military family. And i'm the oldest of four so my family was often moving. We would really only stay in the same place for two to three years. Which means it's hard to find consistent long-term medical care for a child with a disability. The other interesting thing that i noticed a child was that no matter where we went whether it was hawaii whether it was new york. Virginia the culture around my lymph dima was always going to be the same. Everyone would regard me in a similar way of. There's something wrong with this child and it is not attractive and it is not good and that was a big part of my life for a very long time it was honestly incredibly interesting just to see how cultures would change in certain ways. Demographics would change as we would move but this able ism and this pervasive sort of understanding of my condition as a negative thing stayed

Lymphoma Mrs Eggers Dr Witty Bowling MR Hawaii Virginia New York
Three Signs You Shouldn't Buy Whatever Someone is Selling

Does This Happen to You

02:21 min | 3 months ago

Three Signs You Shouldn't Buy Whatever Someone is Selling

"Three signs. You shouldn't buy whatever someone is selling number one when they have king of the puddle syndrome. I'm basically an omni channel marketing ninja. Lucas told us. Once i optimize your seo you'll increase your sales by a thousand percent. I'm the best at what i do. You mean the best within a two mile radius. My intern muttered under her breath. Sending me an i role the marketing ninjas self-confidence was sky high but his pitch read on how do your metric compared to competitors i ask him other digital marketers had shown us track records of two to three point conversion rate increases. But lucas was baffled. It seems he didn't consider that there were others like him out there. But with more data driven sales pitches he stammered. Yep but What i do can't be summed up in a single number. It's complex because i look at the whole picture that's a little vague lucas and we hard lucas. The marketing ninja our investment would probably have vaporized thankfully his pitch fit a pattern that made it quick and easy to rule out. Still people often get fooled by others. Self-confidence it's hard to be the only person in the room thinking. I'll be the judge of that and if you're not a subject matter expert it can be even harder to spot baloney but when you're about to be bamboozled. There are a few ways to tell that self confidence is just camouflage for a lack of substance one. They exhibit king of the puddle syndrome. The only way to be the best at something when you are in fact not the best is to shrink your reference circle until you are the best in the circle. That's how millions of people can claim to be the most sought. After life coaches health experts marketing gurus or ad agencies they could be sought after by millions of clients or merely sought after in their own neighborhood

Lucas
Jimmy Frattiano and the Two Tonys

Gangland Wire

01:33 min | 3 months ago

Jimmy Frattiano and the Two Tonys

"To tony's came out from kansas city. That's what caught my eye on this. I was noodling around looking for stories and interesting stories on the internet. And i kind of knew about this. But i'd forgotten about it. They were kind of minor mob guys in kansas city. Their real names for anthony ran kato and anthony. Joseph trombley know. These guys are kansas city and they really were just muscle for hire who had been arrested many times in kansas city. And like you know ambitious. Young men in the fifties. They might want to go to california to be aware the street. You're paid with gold out there. In hollywood sleep with those hollywood stars and and make a lot of money and and really take their their act to someplace where the police didn't know they. They chicago outfitted already. Kind of put The boston place out there. A guy named jack dragana. Who was a boston and these guys show up and they probably had some. Somebody had gotten hold of somebody and said hey these two dudes are coming out. They're tough guys and and maybe you can use them. They're looking for work and renate some muscle. I got out there and they became part of mickey cohen's crew. Mickey cohen was a gambler and was had been connected with the East coast mafia for a long time. And he'd move out to los angeles and had a book going out there. A sportsbook is making money maker for the mom and so he. He took these two guys in to muscle people. You know somebody odi money or he thought somebody wannabes. Bookies was cheating ninety way he could send syndrome beano brand the two tonys out and and muslim

Kansas City Joseph Trombley Anthony Mickey Cohen Jack Dragana Kato Hollywood Tony Boston California Chicago East Coast Los Angeles
What is Fungal Overgrowth?

Dr. Jockers Functional Nutrition

02:33 min | 3 months ago

What is Fungal Overgrowth?

"Got a growing condition. Our side he called small intestinal fungal overgrowth and just in general mold and other biotoxins which are basically living organisms that that end up eating different things in our body and creating endotoxins that signal inflammation in different regions of our body. These are these are really really problematic. So mold and yeast can cause major issues including a condition called chronic immune response or chronic inflammatory response syndrome. Sirs lyme disease and other really common one viral infections in then bacterial endotoxin so certain bacteria release things like lipopolysaccharide rides l. p. s. which creates a very potent inflammatory process in our body. The reason why these things are so damaging our system is because our body is hardwired for survival. And we know that sepsis or chronic. Systemic infections have killed more people throughout the history of mankind than anything else and so the way that our body has adapted to make sure. We don't die from bacterial meningitis. For example is that we create this really potent inflammatory process whenever we feel threatened and so when it comes to mold and mold spores or yeast like candida that releases things like leo toxin and Seato outta hide And you have lime disease parrella and different things like that and the toxins that they release viruses that are damaging cells and then the l. p. s. from bacterial endotoxins reasons are released. The body says i'm under threat. That this is an organism that can kill me quickly. So i need to create this really strong inflammatory process and inflammation is the reason why as humans that you know in a sense from physiological perspective. Reason why we've been able to adapt however what we need to adapt to now is really being able to control and modulate or balance the inflammatory process from these biotoxins and so this condition of small intestinal fungal overgrowth in. It could certainly happen in a law. The large intestine as well. However it's very very common for candida in different east organisms to overgrowth different Different mold yeast like organisms. I guess you could say To over to colony in the small intestine

Chronic Immune Response Chronic Inflammatory Response Systemic Infections Leo Toxin Lyme Disease Meningitis
'The Coming Christian Persecution' by Thomas D. Williams

America First with Sebastian Gorka Podcast

02:11 min | 3 months ago

'The Coming Christian Persecution' by Thomas D. Williams

"Professor you have a book. I think you just let it out of the bag that you have the manuscript back from the publishers super exciting. The title is the coming christian persecution. I'm not trying to be funny here. What do you mean coming. Isn't it already happening if we look at what happened onto isis. What's happening on the boko haram in africa. What's happening to church. Being closed down by the canadian authorities the police in california. I don't mean to belittle the title talk to us. They'll give us a little bit teaser. Of what the books. Main thesis will be well. A teaser would be this. That i look at the beginning on what we understand by the age of christian persecution as so many people still today thank when they think of persecution anything that the roman empire i the martyrs and the coliseum they think of the lions they think of the witness of those early critics which was spectacular. The witness in blood but what they don't realize is the persecution that is worldwide at this point. How many christians in the world live under active persecution. Both authoritarian states and growing way in formerly democratic principled formerly former christendom the west in other words and i think that what they don't realize is that this is very very bad right now. The worst that it's ever been in history and it's not getting better for two main reasons. The drivers of christian persecution are growing stronger every day whether they'd be radical islam with they these still the atheist communists of of north korea and china whether it's something like the hindu nationalism that we see in india especially under narendra. Modi all these things. They're not growing smaller growing greater. But this is happening simultaneously with a lack of willpower on the part of the west to oppose this. We no longer believe that. This something the last acceptable prejudice is the prejudice against christians. And this is something where people wikipedia actually has an entry for This syndrome of christian persecution in other make fun of it as if this is something that doesn't really exist but some people pretend that it

Africa Lions California Narendra North Korea Modi China India Wikipedia
Symptoms of Mold Exposure

A Healthy Bite - ThatOrganicMom

02:21 min | 3 months ago

Symptoms of Mold Exposure

"Two questions one. What are some of the symptoms of mold exposure and to can a family that lives in the same house. Have one person that has symptoms of mold exposure while other people in the family don't and then to expound on that. If i'm thinking answer's yes if so why does it happen. Okay so yes. You're correct answers. Yes basically how this works. Everybody has their own you know immune systems and their own. Let's call him talk city levels right. You have thresholds certain people are gonna reach those thresholds fashion others and there's so many variables right so for instance if the husband or wife getting. Let's say and they're not feeling well a could be because when they were a kid they were exposed to environmental exposures. That kind of are at that helped them reach that threshold sooner than the other person so not point there they have. They're having these exposures they're starting to just it just gets triggered it gets exacerbated and essentially they start feeling these effects way worse than than some other people i. I noticed usually in a family of four. It's usually one of four or two of the four that are not feeling well and the other two are typically fine which can make things a little difficult in terms of just getting that support system that you need. It's hard to. It's hard to support someone around. Something you haven't experienced yourself aren't human nature. Essentially what are the symptoms of a range. I would say the biggest implants that year of our brain fog. Chronic fatigue syndrome have eczema skin. Rashes is etcetera. You have definitely cognitive impairment on top of the brain fog. Were you know you're it's not just like you're taking longer to come up with thoughts. You're losing trains of thought entirely. I'll have from on the phone. And i'm asking questions Like just mid stride dif- completely forgot what they're talking about or were they. Were you know we just obviously have the patience to kinda talk things through in and get them back on track. I it's really. It's really sad and scary. Stop while the other things respiratory infection in respiratory disease a you have basically the onset of cold never quite goats those away. These allergy like

Eczema Skin Chronic Fatigue Syndrome Respiratory Disease Cold Allergy
"down syndrome" Discussed on The Lucky Few

The Lucky Few

04:34 min | 8 months ago

"down syndrome" Discussed on The Lucky Few

"Video. You posted of addie gazer in the car and she had her doll. Yeah so sweet and and so to the world sound world standards not age appropriate. I guess you would say so. I understand what you're saying as far as sixteen and five. Even though i'm not gonna lie that's hard to hear right sometimes like oh she sixteen to compare your sixteen year old to. That's almost like when i would get her or when i even do get her tests testing done for pt. And we're her bench markers are at. I'm like i do not see her as three. No that can't be possible. You know and it's set sting and i guess i'm just thankful that you're saying that sting doesn't go away but we could choose how we hold it and how we react to it. 'cause yeah it is. It is also precious as an outsider. I see that for addie. And i'm like oh that's sweet her doll. I love that. But i can also see as a mom how you might be okay with that or my mom heart like wrestling with that kind of thing. That's where addy's made me better be told guys that is why sweat was so devastating to me when i actually had a child with down syndrome because i actually do. I think we all have expectations that life. But if i'm being completely honest appearances and image and this little miniature of what it's all supposed to look like because that's what culture says bass. Actually i actually care about and addie has in so. I felt like the devastated because it was like that was stripped but actually what i have gained over sixteen years. 'cause like i hated those tests when they were little like you know. Prepare my heart in. Like kinda toughened up a little bit for them to tell me that like she's three and i'm like no she's not she's nine and don't see you know like it was hard for me This past christmas. She asked for a kitchen and she's asked for a kitchen a lot. She we had a kitchen until she was about ten..

nine five sixteen over sixteen years about ten three sixteen year old addie gazer christmas addie This past
"down syndrome" Discussed on The Lucky Few

The Lucky Few

02:14 min | 9 months ago

"down syndrome" Discussed on The Lucky Few

"Friends world down syndrome day. We love this day around the whole wide world and we are coming in hot today talking. I got my frog voice. Merced tasting of your voice has low income. I need it really have to try i. We are so excited to get to be recording. This episode is a bonus episode and we are so happy here always been lucky. Few podcast for restricting the narrative shouting the people down syndrome so this is heather or cd's and mica and today on this world down syndrome day with his bonus episode. We are going to be talking about twenty-one things we love most about down syndrome about our kiddos. Thank you for joining us on this very special.

today twenty-one things Few podcast down syndrome day about
"down syndrome" Discussed on The Lucky Few

The Lucky Few

01:36 min | 9 months ago

"down syndrome" Discussed on The Lucky Few

"And three twenty one twenty one. It is world down syndrome day and shouters of worth. We know that shifting the down syndrome narrative will take more than a day or innocent and celebration creating a world in which everybody can belong. It is more than a moment. It is a movement which is why i am so beyond thrilled to announce our newest endeavor here with the lucky few. It is called. this is down syndrome. It is a global movement to shift the down syndrome narrative. Let me tell you more about it with storytelling relationship at its core. This is down syndrome. Will offer an expansive relatable in transformative. Look into what it really means to live with down syndrome and guests when we are launching this movement. Dente dan on world down syndrome day march twenty first twenty twenty one so through powerful images invites is engaging stories we will show a variety of aspects of living with down syndrome we do this by photographing and highlighting not only people who have down syndrome but their parents siblings grandparents extended family members friends. Teachers co workers roommates. Anybody connected to a person with down syndrome. We want to tell your stories and we want to invite you to join this movement. We need your help to spread the word. So here's what you can do you can go to. This is down syndrome dot com where you can get all of this information and more. You can also submit your stories through that website..

"down syndrome" Discussed on The Lucky Few

The Lucky Few

04:33 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"Patiently and did some hiking and while both of my kids with Down Syndrome are very active. They're active in their own time, which means dancing all they are jumping on the trampoline. So a hike and let's just be honest here friends. The davises aren't hikers. We're not like let's hike I don't own a camel pack or whatever things are more like they need to spend the money to do a trip. We're going I would go into an all-inclusive in Mexico friends. I'm sitting by a pool. I'll do some yoga. I mean, let's just be honest of who we are but we don't own a tent so we dead. Hike and it was a decent amount of time and I was sure that Mason would have moments. We call it a flop and drop and that just looks exactly like it sounds she squatted down and it's a break time and she was left pumped the whole time and there was like a river to cross and she had to jump over rocks. And normally it would be like I too scared I can't do it and instead it was I've got this leave me alone. And then she did it all so and then August was always just along for the ride sweet boy, but that's some good news. It was so fun and not even a moment of birth of my kids didn't feel overwhelmed on the hike there you go. So now you just always have to hike Big Surf totally and now we were hiking hikers and he'll maybe your hikers home. We've had a good experience Kayla you have any good news about yourself or someone you love who has Down syndrome. I just recently won a Kelly Dixon of Rod that promotion. Leadership and a good can do attitude. Yes. Congratulations on that. I'm sure that I'm sure you add that to your award your award wall or something because cuz you're a rockstar. Yes gives you a rockstar and I do want to see that wall that proud parent I bet back again. Well, thank you Kayla for sharing that good news Ashley Kayla. Thank you again for being on the show and everybody listening. Thank you for joining us and as always friends we want to hear from you. We love your good news. You can leave us a voicemail or you can DMS on Instagram and share your good news about your love going with Down Syndrome or if you have Down syndrome your own good news, and if you have a product or business office wants to help us out the worth of people with Down Syndrome. We would love to partner with you and you can email us at hello at the lucky few podcast.com for sponsorship opportunities. We also keep listening because we are dead. Working towards our holiday gift guide right now. So if you have a product that you sell something that is benefiting the downstairs Community if you have down south and there is a product that you sell or you own a business. If you have a service that you know would be great for our community. If you're just around person and you have something rad that you would like people to receive for Christmas week are right now taking applications for our holiday gift guide. We do an episode every year where we highlight around 10 services or products that we think will benefit our community that we want for Christmas time that we think you would want for Christmas or Hanukkah or Kwanzaa. So you can go to our bio in Instagram or go to our website applications are due on the 6th, which is Friday. So you need to get need to vote and that you need to apply for our holiday gift guide and as always a huge thank you to our editor Josh Davis and our producer vouch leader to our sponge. For this episode and to all of you who have shared the lucky few podcast with your friends go to listen faithfully and continue to cheer us on it means more than you know, don't forget to subscribe to leave a review on Apple podcasts, wherever you listen to your podcast and remember that you dear listener supporting your loving with Down Syndrome. You dear listener with Down Syndrome. You are a shudder of worth and you are a narrative shifter off to keep on keep it on get out and vote for here cheering for you. We will see you and be together on the next episode when we will maybe know who our next president is, but we might not dead, but hopefully we do. All right friends take care of we'll see you next time. I I thank you so much..

Down syndrome Ashley Kayla Kelly Dixon Big Surf Mexico Mason Apple president Josh Davis partner editor Rod producer
"down syndrome" Discussed on The Lucky Few

The Lucky Few

07:57 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"Yeah dancing pig. If you just look at it a piece of legislation like the transformation to competitive employment active. It was introduced by Congressman Bobby Scott who is a a a Democrat out of Virginia, but also congresswoman Cathy McMorris Rodgers who are was a republican out of Washington state who also has a son with Down Syndrome so you off again these these issues are are worked on from from all sides and I think once people hear that, you know people with Down Syndrome can be paid Thirty cents an hour and it's totally legal. It's it's a little it's a little jarring I just or for Americans So, you know like that we work with with everyone and anyone who will talk about these issues and and how they can help fix these things that need to be fixed. Yeah, right. Then I think some barriers to particular legislation. Like what does dead gameplay pennies per hour? That's why people like me or so game. Cents an hour of individuals performing the same task a game paid at least minimum wage. And as far as the mayor's access for people with special abilities off in the table Community. We want to be we have the ability to get married some of the challenges just keeping those available effects and using the person that we loved. I had a red those give and take both but not one was your happens. But to me, this is a failure in life. So definitely Kayla, when did you start voting and do you know a lot of people with Down Syndrome who do vote as well? So I started When I Was Eighteen years old and my parents would help me by looking at the ballots all day before hand. So like this is Jacob this line and now this guy signed out when I went to the ballets. I know who I was voting for and they told me to Ubisoft wage, you know, what the working on the way I can vote proactively as far as individuals with Down Syndrome to vote. I'm looking to see about individuals that do vote dollars about eighteen and over. So with one of them is Diaz volts and this encourages stuff advocates in political participation and self-advocates. We also have a campaign and as I will because we put this out and all social media outlets and I hope you take a look at some of these out because we put a boat because so what I said was I felt because of voices count and I voices are stronger together. Nothing about us without us and our votes definitely mantle And so powerful and so important. Yeah, definitely. If you want to be proud to to be an American follow and the SS on social media today because you get to see all of these people with Down Syndrome exercising their their right to vote and you know talking about the reasons why you're so so important. Yeah. I I hope everyone goes as soon as you been listening to this episode to Instagram and follows along with in DSS, and there's some really great voter guides or on the website within DSS, and I hope that people if you haven't voted yet that you get out and vote now like in just a few minutes, if you're on your earbuds just walk their walk to your boating you're pulling place right now. I have another question before we let you guys go and if you could tell me on our listeners, what are some of the things need to be aware of when it comes to advocating for Down syndrome right now in our political climate you already mentioned the two different acts that you're working towards if there's anything else that we need to keep our eye out for and be aware of his Advocates wage has Down syndrome Advocates right now, I'll start and then and then turn it over to you because I know you have some some important things to to say about this but you know, it's important that you know, we keep our eye on covid-19 relief and in what you know going on on on Capitol Hill with that and to make sure that our community is included Universe. We we can't let another a coronavirus relief package go by without these priorities included. You know, it's it's so crucial. It's it's getting you know so much so much airtime and it's sucking so much are out of out of DC dead, but it's it's so crucial that these priorities are included for our community so that they are not left behind, you know, the ramifications of this this. We'll just be worse for for this community if if it's not addressed, so that's something that I would definitely keep an eye on and off tail and I'll let you touch on this but I know you always talk about just people being involved and having their voices heard, right exactly. Like I said earlier, we want our voice to be hard and when I was in Chicago miss it that much more powerful and much more effective and this is why our personal stories matter because that's what comes across about when we're talking with Congress members of Congress that our stories and our voices made of the most wage. I hope that's a great take away. Important for people to be involved in to you know reach out to their their members of Congress and all of that, you know, you can go to our website and we have action alerts that he can fill out that you can email your member of Congress and and their office and I think we time to kill and it was about 20 seconds, but it took to do and Thursday it's so effective because they need to hear from you. They need to hear your voice and have you become an ambassador all we have all monthly cause and this helps you talk about all these priorities that we have mentioned tonight and just feel even more involved with an adoption of community you can have you talk to your local affiliates. And you can always text 5 to 8862 Lawson job and this will get you in touch with your part your policymakers. You can sign up for our newsletter house or who knows. This should have blood in your area to where you need your colors members with an Nvidia to be able to perform old dog is trained as going are in all the public policy legislation..

Down syndrome Congress Cathy McMorris Rodgers Congressman Ubisoft Virginia Jacob Nvidia Bobby Scott Instagram Kayla Washington Diaz Chicago
"down syndrome" Discussed on The Lucky Few

The Lucky Few

08:40 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"You see that? I know that I'm the luckiest person in DC to be able to to to work every day with people like Kayla and and in D C so long that when you work is it like a team or is actually a part of a team and if so, how many are on that team? And yeah, absolutely. So at the national Down syndrome society that we have are National advocacy and public policy Center. So both Kaylin, I work there. We have a number of other team members some that hands off, you know different kind of policies and and areas that we look at and you know some that are in charge like Kayla of making sure that our community is is behind what we're what we're doing and and making sure that they're reaching out to their members of Congress to help get things done and all of that so we have about six people on our team which is dead. Is really really great. You know, it's a it's a small team compared to you know, other organizations and and things like that in DC but we're able to get a lot of things done just because there's so much passion and love for the work that we do and you know, we all know how important it is. So we work hard and we get things done, right Kayla exactly. Yes, cats. Yeah. We appreciate all of that work Kayla. We haven't seen you in two years. You're looking lovely as ever darling. But the last time we spoke you were lobbying for the able to work at home to where are we at with that two years later to use later. I'm very happy to say it past amazing job. Now you can save their money into a table accounts even better. So good. Definitely. It's so good so good, but I'm still liveing. I was just talking with members of Congress. I fell volt and other speaking engagements but since March everything slowed down because of covid-19. I am home. I have been grounded at home and I've been I'm still lobbying. I'm just you know, like there's always Zoom really Congressional mediums. I'm speaking at at Bush family like yesterday and just had a big speed with the Bank of America and I love, cuz I really love just being able to continue to lobby and just speak and definitely split in on message. Absolutely. Yes. That's amazing Kayla. Have you has it been difficult doing your speeches over Zoom, or do you kind of like it more? Honestly, I like it should be face-to-face, but I understand on the need to do it over the zoom because it was impacting us tonight. Yes, so I'm looking forward to ending covid-19 pandemic. You can go back to square Lane back to walking and Capitol Hill's being able to do everything face face to face again God. Oh me too. Yeah, same girl. Okay. So what what are you working on right now? What are some things you're currently lobbying for and both of you either you can take this question definitely actually don't take you before I take it over a month or so, you know as Kayla said we we all kind of had to shift everything that we were working on in March and you know from an advocacy perspective. We had to really look at what our computer Nitty needs during this this crazy time. So, you know, we were reaching out to our community. We took surveys on what the most pressing issues are facing during this pandemic are and we identified three priorities that were pushing on Capitol Hill to ensure that you know, our people get get what they need during this time. So, you know, one of the big issues is funding for Medicaid home and community-based services. So those services are so crucial to you folks in our community who need, you know, extra support to live independently and to stay out of you know, things like institutions and under congregate settings where we know that the virus spread very rapidly. So this funding, you know is very important during normal times to help people stay out of of settings like this, but it's even more crucial now because of the risk of the virus SpongeBob, They're so you know, that funding is is crucial additionally back when the what was called the cares Act passed in Congress. There was a stimulus check that many Americans received. unfortunately because of that because of the way the definition of dependent was written in the law individuals who are over the age of Seventeen, but still claimed as dependence on their parents taxes were not able to receive any money. So this was so many of the adults with Gavin syndrome in our community who are still claimed on their parents or their caregivers taxes. They miss out on all of that wage money, which was kind of I think a shock to our community because so many people were were expecting it. And then just kind of didn't receive a check. We started getting calls about you know, when their stimulus Jack was getting there and we looked into and said, you know, it's not coming. So we both are you know, really pushing for whenever the next stimulus package comes out whenever the next economic relief package comes out that that issue is is a draft choice. And then finally, you know, there are so many in our community who are doing virtual schooling or some sort of hybrid model and you know, it's just not conducive to so many of the services that students with Down syndrome and other disabilities receive. So it's so hard to do things like occupational therapy and physical therapy virtually and we know that our students are are being set setback. So we want to ensure that when things are, you know perfectly back to normal and everything is in in school again, and they can receive those therapies that there's some funding for compensatory services to help catch them back up to where they should be. That's a full now that was a full plate. What can you tell us like walk us through? What does that look like, you know, so you're doing those things is that look like meetings phone calls, are me with both all different sides all different parties. All different individuals is just like a bipartisan thing. What what does that look like? Absolutely for you know, these everybody is Faith is very focused in DC and has been you know, since March on on these issues. So it's a lot of meetings, you know, unfortunately, I live about a mile and a half from the capital but I'm you know in my in my apartment on Zoom from about 9 a.m. Until 7 p.m. Depending on the day, but you know, it's a lot of meetings. It's it's something important though that the people who are making these decisions on what it is included in the next package here from our community and here why these things are important and that's where somebody like wage. Kayla is is so you know helpful and effective because it's one thing for me to be telling decision-makers. What's important to the Down Syndrome Community bumper hear it from from somebody with Down Syndrome. It's an entirely it changes the dynamic wouldn't you say Kayla? I was definitely say so and it's hard for them to say no to a self-advocate when we are pushing these priorities because we hope will shading no mines and we're not going to stop knocking on doors or not going to assume dewa's and they're just keep pushing. Knocking on the same doors. I know.

Kayla Congress DC Down syndrome Down Syndrome Community Kaylin Bank of America Bush family dewa Gavin Medicaid Jack
"down syndrome" Discussed on The Lucky Few

The Lucky Few

07:23 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"Hey Heather here, and I'm so excited to get to share with you more about Jonas Paul eyewear. They have a mission to help kids feel beautiful and confident in their glasses there a town home try-on kids, which are just a dollar send you a variety of options of frames and your kid gets to try them on and feel confident and great before ordering and when you're ready to order prescription glasses start at your home, Be $9 including prescription lenses. And right now they're offering blue light blocking lenses which are perfect for the extra screen time and online learning that so many of our kiddos are doing so they your need of glasses head to Jonas Paul eyewear. And type in fifteen the lucky few for 15% off just for listening. Friends, the timing could not be more perfect to have our sponsor able now able now offers tax-advantaged savings accounts for eligible individuals with disabilities wage now accounts are the result of nearly a decade long cross disability. Advocacy effort. The idea originated with a group of parents hollered to those parents who recognized the unfairness of not being able to save funds in their child's name for fear of losing essential disability benefits now able now is available to qualified individuals in all 50 states learn if you or someone, you know is eligible for an able now account at able It is election day Mercedes. I can't that is wild collection of the lifetime of the lifetime engine wildest time of life. Oh gosh, so much is has happened is happening and election day. There's a lot of strong feelings on a Feeling we will say surface e because do you want to share yours, but I I am so across our guest today because we I will speak for me you speak for you? Okay. Well, let's make sure not my My Flesh as Mercedes likes to put it and affect me and my loved ones greatly. I understand that significance and I think we're in a political atmosphere. That people who maybe didn't care about politics before care more than ever is kind of what I'm gathering, right? I feel that way but I still feel like I feel very under-educated in in the political atmosphere and it's not my wheelhouse so like the language is tricky what there's so many things to care about but what should I put my energy towards how do I understand this you read things one way or like? Oh, I agree with this and then you read it the other way like, oh, I I don't agree with this right. Do I agree with this? How does this affect me so long we have the experts on of all the experts. I'm so thankful that they're on because I think Especially when it comes to raising a child with Down Syndrome. I there's certain policies that are just not at the Forefront of searches sunflowers here with me and I know also nothing about politics. I also don't know who to trust when I read things because I am so new at this and I am so not aware off in a want to change that as I get older and especially as I grow up. I didn't know about our government. No, but really and because of everything that has happened this year. I'm an adult like I need I need to know more and to what are your favorite sources when you look online and I and I even wonder if that's skewed. I don't know. Yeah, I am everything's a conspiracy, but I just know that there's two parties in Tampa genda's and page. Fine, we could get into it and our talk but I'm excited that it's election day and it's all going to be over six. Oh my gosh hilarious, right? Okay. Well, let's let's get to it and bring in some people who know a little more than you are one of our first guests. We are so excited to bring her back on the show. She was about two years ago. I can't believe it's been two years. Her name is Kayla McEwen and she was on episode 17 back in November of 2018. I remember it well and as a refresher home Kayla is the very first registered lobbyists who has Down syndrome and she does a lot of her work in DC. She is also Ruby's rainbow scholarship recipient as everyone who listens knows we are big fans of rubies. Rainbow. Oh she is a Special Olympics Ambassador. She is a podcast host herself and so much more she is lovely and charming and Brilliant and we are so excited to home. With us today Kayla, welcome to the show. Thank you. So happy to be bags. Like you said only has been away too long. So thank you very much for this great honor. Thank you. Thank you for your time. Yeah. Absolutely. Thank you and along with Kayla. We also have Ashley and I'm so excited to meet you Ashley. Can you tell our listeners a little bit about yourself? Absolutely. My name is Ashley housing and I am director of government relations for the national Down syndrome Society so long I work alongside Kayla to make sure that you know people with Down Syndrome are represented in Washington DC and on Capitol Hill and throughout the country and in these important issues amazing. Thank you. Thank you so much for taking the time. I have so many questions and I don't even know where to get started. But I'm I'm really thankful. You guys are here with us off. Day and talking about politics. So let's get to it. Let's see Ashley. Yes. How did you even get started in in politics and with home in Down syndrome advocacy? Yeah, thank you so much for the question. So I started with ndss a little over 3 years ago. Now I have been in DC since 2010 kind of an offer various various roles, but I realized you know before I joined the National Down syndrome society that I wanted to do something good for the world and to you know, make sure that there is some more Equity all around in in our country for amazing people like Kayla and all of the other people on staff that have that have Down syndrome and and wage who have Down syndrome around the country amazing..

Down Syndrome Kayla McEwen Ashley housing Jonas Paul DC Heather Tampa genda Olympics Washington director
"down syndrome" Discussed on The Lucky Few

The Lucky Few

05:56 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"So there's that as well, but I have written two books one is called the lucky few one is called scooter make some room and in those books the language I use is language that I now think is wrong and I've written it down it's there and it is teaching people and guiding people and that feels problematic, but also, I don't I mean I'm not I'm not doing anything about that because what can I do? It's printed. I'm sure this thing's I can do that sounds like a cop-out and then I've given when my books come out each time. My books come out wage launch. I've done podcast interviews. So I've probably been a guest on over a hundred podcasts at this point in time and often language is brought up and I always say people first language always use people first language and not the last I'd say 3 years or so. I've really done a deep dive in listening to the voices of disabled people and what that means people first language is my lense has been down syndrome and in the down center community people first language is what we Prefer, it's it is the most honoring language to use for people who have Down syndrome is a person with Down Syndrome. Not a Down syndrome person, but that's not the case for other disabilities and I have just blanketed my understanding right for that. So I remember a moment. I was invited to be a guest speaker at a public event that half the people in the room had disability half the people in the room did not and it was like a launch for this week. They were going to spend together and right before I went on the person who ran this event had taught me about the term different abilities and differently-abled and I thought I loved that and I started using that and the person who told me about it was a neurotypical able-bodied person and I just thought that so great and I started using that language and that's the limit is my book and we'll talk about this in the episode. But that that I'm now learning that that term different abilities and differently-abled dead. Is patronising and not helpful in the disability conversation. So I know I just had a lot of things there and we can impact them together a little bit..

Down syndrome
"down syndrome" Discussed on The Lucky Few

The Lucky Few

08:14 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"That. So. The second thing is that one what I see happening a lot with kids with autism is that because there's so called reading comprehension issues, the chives reading a book, and there may not getting anywhere with it or not understanding it. So you're constantly giving a book of the same same level, right so what do they call them like Jack and Jane Books or something? There's some. Yeah. Yeah. So you the kids growing So how that gets in the way of giving complex info torches because we want to do that. So one hack it on that is to let the reading be a separate activity and then give input maybe through through audio and like give give increasing complexity. Whatever it is for your child whatever that's great for your child. So just let's keep moving on. Let's not get hung up on reading comprehension right at my view. Okay. So that you're not why would be different from everybody else's but that's my view that that's because otherwise we're just wonder beat the same type of book forever. So let's Right I really love that with home school I've been able. It doesn't completely work for sunny bet kind of do a education based on like. Charlotte. Me Sin a little bit who. Does a lot of a lot of learning through literature and for Sunflower who can't recite book back to me or Can't really say this character did this and this But what I see her do is being gauged with me reading out loud to her about her book and then mimicking that and also then reading her books that she can read successfully. So at first I was like, okay I'm going to start reading chapter books, my kids, and they're kind of running around and they're kind of are they even listening but roads can tell me what's going on. Like in the book, even though I thought he was doing somersaults over there and not even paying attention sunflower would be drying at the same time while I'm reading out loud and she will show me signs that she still listening and I have felt that taking that approach has made because I'm actually not a natural reader I don't prefer it. Show me the movie please instead but I have seen that I think how I was taught how to read. It was vigorous. It was hard. My mom had an accent so. Her teaching me how to read was interesting because Spanish was her first language and it felt like reading I wasn't successful at. But I feel like if I was exposed to more reading out loud seeing my mom read or having a less pressure situation. I could have adopted that feeling and I'm I'm happy to have been shown that so that I can hopefully create that tone for sunflower and so far in how she really loves to read, she likes to do her homework or her happy sheets. and. I just hope we can continue that but I know once I start testing. Once they get tired I start testing and I, WanNa see where she's at a kind of. It goes out the door a little bit. Your Tedtalk I would love to touch on this before we have to inner conversation, but you talk about. Appearance and how appearance has become a measure for society essentially, and for education. We talk about that interview of measuring intellect touch on that a little bit. Yeah, it's kind of. It's obviously kind of unfortunate but like the. For, whatever reason there people seem to be stuck on the fact that there's there's a tongue sticking out of the mouth I think that that is some sort of a subconscious measure of intelligence for so many people at the beginning of my tech talk I kind of said it. I ask the audience a picture of sick to my audience and I was basically challenging the norms of how people look at a kid with Down Syndrome And I I told them that you obviously have the talk I said that he doesn't speak and I think I rotted off his diagnosis and then I asked if do you think he has an intellectual I think learning disabilities what I started low Iq or something like that, and a majority of the audience raise their hands I. They didn't because they I think they pop IV is tricking them which I kind of work. that a majority of them. So that's like your immediate thing only have to say is the challenges in speak and the child has down syndrome or autism and your images formed already. Okay. So what have? I. Told You I mean what? What information given me you in order for you to make this assumption I have I have set that he has You know an extra chromosome but what do you know about it? So are you are I said he's not speaking what does that tell you he that he cannot speak that his Muslims don't move or whatever his brain is not giving the signal to his mouth what information have I given you? That allows you to make this assumption about my son that he Is so you know. You've already make that assumption race had not. I've setting them up for God they did raise their hand but but that is that we're so stuck on. External measures like appearance and also I q tests, which I there's the court by this. Extremely. Awesome. A non speaking artistic who who talks about how he how it is for him to give Kostic tests about he talks about it's as though you know people you're flashing lights at your hands are in baseball mitts and there's He, he actually has really good block talking about how non speaking sticks are judge for intelligence. So is named first name is Edo. And then Kid Arts Kfi Dr. But that's what it is. That were just setting up these like fake measures of intelligence and we don't know that they're fake. And we've built an entire education system on them in which we're supposed to. We're supposed to raise all of our kids in a way that. Image it up to those standards yeah. Yeah. The fake standards. It's good stuff. And I feel like we could could just keep having this conversation for a long time. I WanNa take this like two. I want to take this into olive our school settings and but you know our hours almost done here. But I I am really excited I. Feel like so much of what you said by. Is just things that I need to ruminate on like I need to really look at the way engaging with ace I really need to look at the way that I, am. Doing, reading books with him and even in the way that I am saying, okay let's circle this word and waiting for him to do it I, tell them to do. Man I this is just really blowing my mind so. We're we're so thankful for you joining us and I do and. To tell our audience to please go check out this tedtalk because I think and hopefully after you've heard the things that righteous had to say today. That you'll. You'll just jump right over there and give twelve minutes to it because they think it really is. Something that Especially, our I mean for parents but also those listeners out there who are educators would love for you to for all of the educators to be thinking beyond motor. Motor skills and thinking about what does it mean to let our kids show us their intelligence before we put blockers up. So good. So. I will go ahead and. Let us take a break. We'll jump over here from our sponsor and then when we.

Sunflower autism Jane Books Jack WanNa Charlotte tricking Kostic baseball
"down syndrome" Discussed on The Lucky Few

The Lucky Few

08:14 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"You have down syndrome and like you know high tide of us like a T. S. H. of eight or nine, which would be like you would start acting on this immediately with another child by. You have down syndrome. That's okay for down syndrome and it's because they have. A something. I don't understand but It's it's so I just want to. Share a quick story of like seven when when you sit to raise his hands. He can't do this. Okay. Just something is not working I, don't know why condo despite if you keep something on a shelf, then he'll reach up and get it. In case it sid raise your hands into an exercise each time I've meant to a as thinking like there's many things like that that he can't. So I was referred to an urologist. And she she said old I've seen this a lot in down syndrome and. I was really taken aback. I mean that's first of all I haven't and I don't know who you've seen but I also that how does that make any difference right? And the second thing was that maybe he doesn't understand what you're telling you which is it's like an out for the doctor it's like, okay I. I, think that that is. Diagnostic overshadowing is is huge. So that I don't that Centrum Mit though it's not really amid the just like something that. A lot of kids aren't I feel like they're not just because it's taught that this is normal for down syndrome. I. Feel like if you kind of go along the lines of doctor wants to tell you something. And sometimes they don't know the answers you know. So they're just like, oh, well because it down syndrome like this is our easy Goto. Yeah and alternative I. Don't know if it's alternative medicine or alternative practices. Is the right term, but it seems like If I have to go to a certain kind of doctor to even be given that information that there's an alternative option available. You know sometimes yeah. Yes. Just one way that doctors go, which is medically of what they've been taught or what they've only seen. Correct and this is. I heard from a doctor I mean, this is like my high point after my fedex stock was when I heard from Dr, would seem the stock. She said that after my talk she went and she had an adult patient with a down syndrome in an emergency room and she went and explained the condition to her whatever it was but she would not have done earlier because you looked for Guardian and she went and did that and the and the and the Lady Rebound Syndrome understood this out obviously but That conversation was complete and I talked okay like that. One thing that I heard like that just made my life, it's it's it speaks this is a really like open minded lady who's like willing to do this, but it also speaks to kind of a little bit of biases that are existing from before. Even, when you don't mean chill I remember Sonny's my first so. I I dislike your sons, your oldest, and if you told Sonny to go to a room and grab her shoes, will she be able to do that and I remember being like well yes I've asked her to and like Oh. Okay. That's good like almost like shocking that I. Would put that on her show to go do and may be shocked that she actually could complete it. And I I see that come up for me every once in a while when I like show up somewhere might. Tie. GonNa maybe dropped sunflower offer an experience in like say all the possible things that could go wrong. You know and then doesn't happen and she did great and I'm like okay great. Good I almost like it I expect her to do all the things that I Taylor to. But then sometimes when I dropped her off and she's out in the world I, Mike, you guys know but she can't do this this be careful or be aware and it's interesting where I feel I assume competence in one atmosphere and not the other until that I say all this but I'm totally like. I mean we talk about on our podcast. Our whole tagline is to shift the down syndrome narrative and I have found that so much that shift seeing still needs to continue in my mindset and. Sometimes. People might not love this idea but sometimes more. So in the down syndrome community. then out like A. Yeah. It's just interesting that what you're talking about is. A shift in the idea of what it means to have down syndrome right like what when you meet someone with Down Syndrome. How what you assume about them. and. That's what we're all about, but we have to find that got check it myself too. Often. Near. Well I love how as we're talking about this and we're talking about nutrition that. There really is one of the gifts of thinking about functional nutrition is that. We. You know if I was to go back six months and say. What people experienced when they experienced ace. There would be sort of a well, he has autism down syndrome. So he doesn't respond. He doesn't make eye contact. He doesn't understand his name. He's not going to go get issues if you ask them to go get his shoes like those sorts of things and I think what I most want our listeners to hear her. Is that what you're talking about vice is that We can make changes that are that don't have to involve. Taking more medication, we can make changes in our kids lives that really do and I know. When I first started to make these nutritional changes I felt a little. Not embarrassed about it but a little bit. Afraid to say, something to the doctor to say something other people because you start to read and it's like controversial to take gluten out of a diet or it's or there's no proof there's no research it. You know as I would looking like look this up in the autism community. And I think it's really interesting. What you're saying about like this is just how do our kids with down syndrome have a harder time in their guts, processing these proteins and? It's it's not a crazy idea to think that maybe they do or you know maybe a lot of children do and maybe I do and that as we can make these small choices. And see what happens in what I've gotten to see happen is. Just two days ago I ace through his fork on the ground during his meal and I said Ace and attorney looked in my eyes and I said, I don't like it when he through your phone on the ground and he started crying. See you feel bad you. Know it's huge. It's huge and this, and that's what I. I'm excited for our listeners to hear is that this is as much as I can complain about like I had to make bread this morning and cashew milk but these are small things that. Are. Making a huge difference in his life, he is making eye contact and understanding me when I tell him mad at him. Right. Now. It's clear that fog. Vice is lifting. And it's so cool to me. Especially because your yeah, there was a time where you were told that that those things will.

Down Syndrome Sonny Centrum Mit Taylor Mike Ace Guardian attorney
"down syndrome" Discussed on The Lucky Few

The Lucky Few

04:31 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"I remember as a little boy sitting in my house, and my parents were having all these people come over to talk about down syndrome, and now in retrospect, I realized that was as support group that they were kind of forming together before some of the National Down Syndrome organizations were even burst so I got to grow up with that I got to grow. Grow up meeting so many of Christians friends, both with and without down syndrome with and without disabilities, and so I was formed from those experiences, and I knew I wanted to go into medicine, but having a sister with down syndrome. I realized Oh you could specifically be adopter foreign with people with down syndrome, so by fate was sealed when I realized that, and that took me to medical school, and also to public policy school, because I'm really interested in the intersections of medicine, public policy and research, and how we bring that together for people with them. Okay so I want you to answer all of our questions, and misconceptions or truth, so I needed, and maybe you can do that a little bit while you tell us I want you to also talk to us about what you created. Which is the Down Syndrome brain train? So as you answer what the taller listeners about more about the brown down and bringing trained baby. You can also kinda pepper in. Some of the ideas that we talked about earlier sounds great. Let me just start with I think everyone wants the best for their son and daughters with down syndrome. That is just to be understood, but here's what's unfair. There's a disequilibrium equilibrium of information that parents have access to what that means is I as a physician, I as an academic have automatic free enrollment for my case to Harvard Medical School what I could access all of the research publications, and all the Journal publications that come out, but those are very. Very expensive and you have to have access to an academic library and most people out there like my own parents cannot access those journals without paying very high seats. So how do you get your information? You get it when it reaches the news. You get it when it reaches facebook. Get it when it reaches twitter right, but only a small sliver of good academic studies reached the popular press, so I say there is a disequilibrium of information we as physicians have access to more indepth quality information than good intention parents. And when I'm on the road traveling and talking about Down Syndrome or when I'm seeing patients in my own clinic amass lots of questions, but two of the most pressing question. Keep on coming up is how do we prevent? Alzheimer's from occurring in our loved ones with down syndrome? We know at fifty percent of people with down syndrome around the age of fifty will develop signs of dementia related to Alzheimer's and. And sixty percent by the age of sixty, so that's a real pressing concern..

down syndrome Harvard Medical School Alzheimer facebook twitter the Journal
"down syndrome" Discussed on The Lucky Few

The Lucky Few

07:52 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"Of. families that I've worked with requesting that they. Felt the same thing, so that shouldn't be a deterrent into not seeking evaluation. If you kind of have a sense that there might be something more. Do you. Do you feel like? It is it just those behaviors that listeners should look for? Is it like the the stem behaviors the? The fullness of speech. Is it just those things? Are there other things that they should be looking for I? Think you know when you look at speech sometimes. will say it's nonverbal and I can't say that nick is totally non verbal. He gets lots of words. It's just that if you were to ask him a question, could he respond back in sentence so in a sense gal? That is you know I would say? For him, he is somewhat not. In a Napleton that were cyclical conversation back and forth. And there's you know there's there's a lot of grey areas there's. You've got some speech issues. We've got some sensory issues on the behavioral component is well. I mean I. Think those when I whenever I talked to families doin consulting. That's the big three. Speech. And the sensory component, and if you can tackle those together with your team your IEP team, you can really make a difference. So how. How have you seen advocacy change over time from twenty six years ago, Gosh to today. Okay, so back. How many years ago? When I. I was going I would go to these down center on. Events and One was like a Christmas party. and. Everybody's getting on Santa's lap and tell them what they want and Knicks over. There s probably slap his hand I'm. Just not engaged at all, and so I found out like. I just felt like I just started. Stop going to the events because I didn't feel like I. Fit in and really sorta isolated out of those. Whatever was going on because it Kinda made me said and. Fortunately here, Chicago. Or Group or Nasr Group we have. Once I got the evaluation or their secondary diagnosis. They have a group a separate group just for diagnosis family families. So they. They offered these retreats, so we went to retreat and I. My jaw dropped down like everybody had a story about haircuts. Story about meltdowns. Everybody has stores. Kid Ran away and could bind them. And I was just like Oh. My Gosh, this is these are my people. And so that made a difference a lot. I will say that a lot of down syndrome support groups across the country. Don't have that support and I really. Want to advocate and make make it a call to action that you know. We're talking about eighteen percent of individuals with Down Syndrome. Have that dual diagnosis of autism and and those families still lonely feel isolated, and you know fortunately now with. Like facebook groups. There's a lot of dual diagnosis groups there and people are connecting and. Helping each other and you know. Sharing Ideas, answers and sharing their struggles, and and so I don't think now parents feel is as long with with having having most social media outlets. It does feel like I. I am thinking of. I TOOK A to A. Music therapy time that that are local down syndrome connections had and it. It's really hard to see you know for as to be. You know at that point four and for there to be two year. Olds of Down Syndrome next to him who are engaging in the music time and you know tapping the sticks together and trying to sing along and I I think that in those in those moments of like being with other children younger than him with Down Syndrome and seen the difference in development it. That's a really isolating feeling and so I can like I. Can totally understand imagine that for you, Theresa? That would have been so difficult for there to not really be much acknowledgment. For there to not be support groups that are do diagnosis support groups, because if all you see is other kids with down syndrome without a diagnosis, it really is. It's a different kind of thing and you can feel. It can make I mean. It makes me feel sad If I am not going into that space with like. My, you know like my deep breaths already taken and like my head in the right place and my reminders of like. My worth my child worth and all of those things that I need to kind of go into it. With of like developments does not define. Who My son is or that sort of thing? It's hard. It's hard, you know I I remember because my boys are nineteen months car I didn't really have. Times when Nick was born to? Grieve the loss that neurosurgical child will I was busy game. Changing. By the when I got the secondary diagnosis when Nick was eleven. It it hit me hard. I mean I that grieve another. Law says he wasn't gonNA. Be that child I thought? was you know. Down Center. Maybe you would date, maybe he would. Have A job. Maybe take some college classes after finish school. So that. You know I I'll be spinach. Or Good Mont distortive going through the motions, and then then I just when the IP meeting came I rolled up my sleeves, I went in there and I'm like. We got some problems here we need to. This is more than downstream and you guys are in over your head, because nick was as that time. Eleven years old. You know all the Developmental Moss Mawson's. They had take longer right. You get puberty for some reason. I that was early so in everything that happens. Hormonal, wise and whatnot he he was just getting frustrated, and so I had to go in there and just put my my my. Fist down and go. We need some more help here and so. That was a point where we you know. Got The autism specialists on board. And, she did a an observation of the classroom and She was like Whoa. We, you know he's. He's not able to communicate. That's why he's frustrated. And so that's why I keep bringing in the behavior piece in the speech component. However. You wanted to I could go on forever once. We figured that out. He wasn't so frustrated and the meltdowns in the outburst he had. In their real and you know. And so so I guess. My mission now is to just help families like Michael. You're. Know while you're young, let's let's. Start Creep. Up You know. Your child needs a voice whether it's.

nick Down Syndrome Knicks facebook Nasr Group Napleton Developmental Moss Mawson Chicago Santa Mont distortive Theresa Michael Law
"down syndrome" Discussed on The Lucky Few

The Lucky Few

08:02 min | 1 year ago

"down syndrome" Discussed on The Lucky Few

"Be with you today. As per usual, always fun always fun. We I mean really excited because we have a guest on today to continue our conversation about diagnosis, which we had an episode where I shared my story a couple of months ago and WE'RE GONNA go deeper today, which super excited about Our guest has a twenty six year old son, who has been diagnosed with both down syndrome and. And she's a speaker writer, advocate and consultant. And she has a new book coming out, so we're going to have a lot of fun chatting with her but I I wanted to talk to you guys about that episode and And Yeah if you heard reactions or if you've had any thoughts since then when we talked about the dual diagnosed just. Once I'm all star I want to say I'm so excited for this I am. We've talked about this before, but every time we have. The conversation with someone who has an adult child with down syndrome. It's like yes, tell me. A uniform, please only give me all your everything. You know like the wisdom, and I love you and I'm thankful, and so I'm super excited conversation and I? I haven't I haven't gotten personal. People have commented personally to me about that episode, but I do know we do. These retreats ideally retreat with a woman call Liz Pasta. Who Does Rainbow and it's for MOMS have kids with down syndrome, and there's usually about twenty six moms and every time there's either one or two MOMS who have a kid with down syndrome. And autism with the diagnosis. and it is so interesting every time how they communicate a sense of feeling alienated in the Down Syndrome community, and so we talked about that a little bit in episode Mike About I'm I'm grateful to get to use this platform to. Talk about more like we're going to dedicate. This will be our third episode to the topic and I hope that we can talk about it as much as it needs to be talked about which is. As much as Diagnosis, that's not diagnosis. You know so. That's right eighteen percent of the time. Gosto. Let's get. Out of having go. Up Our percentage guy. Here. I love it. Did you get any feedback, MICA? Did you hear from people hey? I had I got some Some letters from some mamas who just wanted to tell me they were it with me. some who have been in the journey longer who? were. Were connecting to my vulnerability and also sort of encouraging me. I also got some. Notes from moms who were like the way you described Ace felts like my child and I have been wondering if I need to pursue an autism diagnosis and I think I'm going to try, or you know that sort of thing, so It was it was encouraging for me to To just hear that the story matter to people you know that that maybe people just needed to hear that their child is not alone in the way that they were developing or that. You know I think that you. Can sit for a while going. Should I pursue this? Do they not say asked my doctor? Should he not and so hopefully? It brought some encouragement in that way And Yeah, it's it's always. So good to hear from parents who are a little further down the line to who can encourage me and and say you know I'm doing the right there I'm. I'm not alone. So, it was really it was that episode meant a lot to me and Yeah I'm really grateful that I got to share my story and be listened to. So. I'm grateful that you shared. Your vulnerable with us. Thanks Joe. Thanks! Well. Let's go ahead and bring in Theresa and herself. she just released a new book a ballot. The dual diagnosis and I'm so excited to talk to her about that and just talk about her story. Her new book is called a new course. A mother's journey navigating Down Syndrome and and. It came out earlier this month, so let's welcome to the show to die. Thanks for being here with us. Thank you for having me I'm so excited I love what you guys are doing and and getting conversation going and glad to be a part of it. Maybe your crystal ball a little bit. Tell us our future. We're so excited to have you to reset before we get started. Would you tell us a little bit about yourself in your family? I have two boys and They are twenty seven twenty six Hank, is my oldest, and he's neuro. Typical and Nick is twenty six there about nineteen months part aunt nick has a dual diagnosis of. Down Syndrome autism also has a burglar Craxi us. So! His speech component is probably less than most. we live in Chicago on my husband allies. Upstairs watching Nick. I'm enjoying this little escape here. and. Happy to be here with you, guys. I'm something for your hair. okay. We're GONNA. We're just GONNA. Get Real. Get into it real quick, so you've twenty six years of experience with this diagnosis. You can tell us. I would love to know a little bit about win. You got the diagnosis. Someone asks you a lot of questions here. Martian K. and then we can take it. Apart we need to, but I wanNA. Know the story when you got the diagnosis and then I want to talk about how you've seen. Things change in twenty-six years because I know for us. Those of us who are raising kids, her younger. And have had social media and facebook, instagram and online and podcast in. There's so much information that we we have an inkling of an idea that are kid needs something for better or worse that information, but we have this community and twenty six years ago. None of that existed so talk to us about when you got the diagnosis server autism. So when we were, we lived in the bay area. And Yeah. We I took him in because You know, we'd go to the Down Syndrome connection started noticing. Who? Just a few little things, and so went ahead of me by weight, and at the time he did not. Fit the spectrum and but. Six a few years later I was like. This is. This is a lot more than down, so we had to. We decided to go back when he was a believable, Levin and do retest reevaluation here and we had moved to Chicago and in doing so the testing method was so much more sophisticated, and in just a matter what six seven years There was a whole team that went on. In my heart I knew he. Probably had I think most people kind of know when there's a certain thing there's. STIM- behaviors. There's a lack of verbal speech. And just it We'll back up and say well. We in California. They said he doesn't fit the spectrum because he he's highly social. You make some really good eye contact I.

down syndrome Chicago Nick Syndrome STIM California Liz Pasta writer consultant Theresa Levin Joe Hank facebook instagram
"down syndrome" Discussed on News Radio 1190 KEX

News Radio 1190 KEX

02:15 min | 2 years ago

"down syndrome" Discussed on News Radio 1190 KEX

"In, in their exotic car and think that people are gonna think that's cool, too. And by the way, he has on his arm one of those women, he absolutely does he absolutely does or often, they'll, they'll, they'll be there together. Well, you know, I'm glad saying he told me that because that helps answer that question I was going to have to ask my dermatologist that because I'm sure he's done in some of those I was going to have to ask him about about why the is. And at some point, they all look exactly the same. They all either. What I've always wondered about room. Down syndrome. How is that people from all over the world if they have down syndrome end up looking very similar? We don't look similar if we don't have down syndrome. Right. We. No Asians with down syndrome. Look very similar. I don't know if Asians look the same or not. But agents don't look like white, Americans, or white Europeans and blacks, don't look like Asia's, my point is, as, if you think Asians all look, the same, that's your opinion, but they don't look like people from the rest of the world, right? But people with down syndrome, ten to have similarities, and I find that interesting. And I don't know how that works out if people would down syndrome can have similarities. Why do we not then end up looking more alike? If we don't have down syndrome. There's something about it, that it creates these features, you know, the truth is have you ever made by with down syndrome that you didn't? Like like you can choose to make fun of people with down syndrome. You can choose not to like them or whatever, but they will never give you a reason not to like, if you meet somebody with down syndrome, you have to like them. They're always nice ralphie may has a whole comedy bit. And people think he's making fun of retarded people. He's actually not..

down syndrome Asia