Down Syndrome, Chicago, Nick discussed on The Lucky Few

The Lucky Few
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Automatic TRANSCRIPT

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.

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