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    Kids & Family

    My Autism Tribe

    Educating, Supporting and Empowering the Autism Community.

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    Latest Episodes:
    A Confession to My Autism Tribe Jan 06, 2020
    Show notes

    EPISODE 46: A Confession to My Autism Tribe

    with Susan Scott

    INTRO:

    Hi, everyone, Happy New Year! I hope you had an amazing send off to 2019.

    I announced last November that I was taking a podcast break, so I thought it would be fitting to have the first podcast of 2020 be a confession to you on why this happened. It’s a bit uncomfortable to share, but you deserve to know so stay tuned.

    Also, a reminder, if you’re enjoying this podcast, please rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks so much for listening!

    SEGMENT:

    • I haven’t always been completely honest with myself and others. When people have asked me if I was ok, I would say, “I’m great!” because let’s face it, do people really want to know what kind of crappy day that you’re having when they ask you that question? I’ve even looked in the mirror and told myself that things were moving along quite smoothly, and things were looking up…when in fact, I felt like I was drowning. Perhaps a part of me was trying to “fake it ‘til I made it”.
    • In November of last year (2019), when I announced that I was taking a break in December, it was from complete and utter burnout. The kind of physical, mental and emotional burnout that left me feeling scatterbrained (beyond normal), dazed, not willing to make an effort of everyday duties like laundry, etc. But even worse than that, I felt myself disconnecting from my son. I was in my own world. That’s when I realized that taking a break was absolutely, without a doubt, imperative.
    • My Autism Tribe was formed initially as a standalone podcast, but then added a nonprofit component. This has proven to be one of the hardest challenges in my life. In 2019, I very literally poured every ounce of energy that I had (after caring and loving on my son) into this organization and podcast. I’ve had some event successes, and other events that have fallen flat on their faces. I don’t have an administration team helping me every day. It’s 99.9% me. I don’t have a significant other that can offer encouragement when I’ve had a bad day, and I know that many of you are in the same situation. It’s tough to keep all the plates spinning and still feel sane, am I right? But I’m not sharing this stuff with you for sympathy. I’m sharing because I want you to know about how some of my viewpoints have changed.
    • In the month of December, I did a lot of thinking, a lot of reflecting, a lot of praying, and I’ve decided that I’m going to change things up a bit. Let me explain.
    • Up until now, I’ve intentionally kept the My Autism Tribe social platforms very “branded”, if you will. I felt like this was a direction that I needed to originally go to establish the My Autism Tribe name, but upon reflection, it completely defeats the purpose of why I started My Autism Tribe to begin with. I wanted to reach people on a very human level, and I’ve done that to some extent through the podcast, but my promise to you is that I start letting you in to my personal life more. I’m always asking guests and followers to share their stories, but what about mine? At first, I thought, “Why in the world would anyone want to see my everyday life”, but then I realized that this is the very thing that I gravitate towards when I’m searching for connection with others. I can’t promise that you still won’t see branded content, because I still very much believe it’s important as a nonprofit, but I can promise you that I will be sharing more of my family. It’s going to feel weird initially, because I’ve never been one to share details of my life with just anyone, and there are some details that I will still hold close to my chest that are just too personal to share and may involve others, but well, welcome to my family’s life. I apologize in advance (laugh).
    • The same goes for the podcast. It is still my mission, and always will be, to have guests that are all uniquely tied to the autism community. Parents, siblings, relatives, providers, and most importantly self-advocates. That won’t change. I will, however, be doing some smaller “snapshot” episodes now and again that will have the theme “Just Ask”. These episodes will feature talking points or questions that have come from people like yourself, in the autism community, followers, etc. This is another way that I feel like I can not only connect each of you through this platform, but also connect on a deeper, more personal level. So, be looking for some of these prompts on the social platforms.
    • I’ll also be trying to do more videos, both personally and professionally, meaning that some will look like complete poo. The other videos will probably look a bit more polished, and those will more than likely be branded to some extent for the nonprofit’s use and distribution.
    • They always say that the best way to grow is the learn from your mistakes, failures, detours, and 2019 has had them. BUT, it was the first year, and I believe there were a lot of successes as well. I’ve met so many absolutely, incredible, inspirational, beautiful people this year, and I know that this year (2020) will be filled with the same. Constantly evolving, forever growing, and learning.
    • I’m SUPER excited to announce some BIGGER things that are in the works for 2020.
      • #1 – I’ve been writing a children’s book series this last year, and they will be (fingers crossed) pushing into illustration within the next month or so. These books will be for children both on and off the spectrum, providing a window and a mirror to autism. A mirror for children that are on the spectrum – allowing them to see the beauty of their differences, and a window for children that are not on the spectrum – allowing them to look into the world of someone that IS on the spectrum. These books began by me writing a story for my son to explain that his differences weren’t bad but beautiful, during a time that I felt like he was beginning to become more aware that he had differences. Each book will contain consistent and fun characters that children are able to closely relate to.
      • #2 – I’ve been working closely with a group of real estate developers and another organization to push for the development of an autism residential community where I live. This community will provide residential options and programs for those on the spectrum. We are nowhere close to breaking ground, but I wanted to share this with you, because it’s something that I’m very proud of, and excited about for our community. I’ll continue to update you as I have more details.
    • All in all, I want to thank each of you for listening to the My Autism Tribe podcast, and being patient with me as I continue to navigate this crazy journey both professionally and personally. It’s something that I’m so passionate about, and I want to continue to educate, encourage and inspire others…just as so many people have done that for me.
    • Here’s looking to a bright 2020, with a vision of hope for our ourselves and our loved ones. I love each and every one of you. Thank you for being a part of My Autism Tribe.

    Sharing an Autism Diagnosis Dec 02, 2019
    Show notes

    EPISODE 45: SHARING AN AUTISM DIAGNOSIS

    INTRO:

    Hello, Friends! Thanks for joining me. This is the last podcast for the 2019 season. I want to take this time to thank each and every one of you for an amazing ride in 2019 – the first official year of this podcast and the My Autism Tribe nonprofit organization. I’m really excited about all of the advocacy plans that we already have for 2020…I’ll give you a hint on a couple: plans for a residential autism community, and an entire children’s book series. Buckle up for a wild and exciting year. As we finish out this year, I thought it would be fitting to take a podcast break before we start our second season. This time is going to be used to soak in every minute with family during the holidays. I want you to do the same. Don’t worry, we’ll still be on our social platforms, encouraging, empowering and supporting our friends. And without further ado, let’s get started with this podcast. It’s a solo episode and I’m talking about receiving an autism diagnosis, and sharing this diagnosis with family, friends, coworkers, really anyone that is involved in you or your child’s life. I’ll also share some tips that I’ve learned from personal experience, in addition to tips that others have shared.

    And you’re enjoying this podcast, we kindly request that you rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks for listening!

    SEGMENT:

    One thing is certain, any kind of diagnosis received, whether for yourself, your child, another family member, or friend, can and will lead to questions. Three and a half years ago, my son received his autism diagnosis, and I wasn’t prepared for what followed. As many of you know, you’re immediately thrown into the unknown world jam-packed and overloaded with libraries of information – whether you want to be or not. It’s part of it. Plain and simple. The days that follow can be some pretty dark ones. As you’re wrapping your head around the very definition of autism, which let’s face it, is a pretty loose one…it’s a SPECTRUM, right? You’re asking doctors questions, asking yourself questions, and then…people start asking YOU questions. Questions that, I guarantee, you aren’t prepared for. YOU are only in the beginning stages of answering questions that you have.

    I wasn’t sure how to answer most of them, and to be honest, my son’s diagnosis wasn’t something that I was even comfortable sharing with others until I had taken the time to process it. I’ve spoken with many individuals on the spectrum, heard their stories on receiving the diagnosis (sometimes much later in life), heard stories from parents on their child’s diagnosis, and all of them have had different journeys, but they also share many similarities. The most common similarity being that it was just flat out challenging to explain autism to their family and friends. And they were even undecided initially if they should say anything at all. I get it – and I bet most of you all do, too.

    Autism is definitely something that people are becoming more aware of, but just as you were in the early stages of diagnosis, they may have a limited understanding of what it looks like. And there’s a lot of misinformation out there as well that has skewed people’s perceptions. Media has recently helped with overall awareness – characters being written in to scripts for films and television shows, even times with the lead character being on the spectrum. But conversations can inevitably have Rain Man throwbacks, and questions of certain savant qualities. We all know these responses to the stereotypes of what autism is, and that maybe your child doesn’t fit in that box.

    A little sidebar, by the way. You’ll hear me reference “your child” throughout this, and I apologize in advance. I know there are many listeners that don’t have a child on the spectrum. Maybe they themselves are on the spectrum, or their grandchild or co-worker’s friend. I’m only speaking from the “your child” perspective because this is from my viewpoint as a parent, but this discussion may be used across the board, so to speak.

    Ok, so where were we? Sharing an autism diagnosis. It’s a conversation that is likely to be difficult and most certainly emotional, but just know that through this conversation, you will begin healing AND getting your tribe in order. It’s really important to have the people that you are close to as allies, because they are just as important as you are in advocating. The whole saying “it takes a village” is true. It takes your tribe.

    You may be told that you are overreacting, and children develop at different paces. That’s true. People may say that just because your child is a little different doesn’t mean he or she needs a diagnosis. That’s true. But you know your child better than anyone, and there are likely some challenges they are having that are not visible to everyone in your family – only known to your eyes and your heart. So, let’s talk about some of the ways that you can better equip yourself and others for this conversation.

    The first question that I often heard was, “Autism diagnosis. So, what does that mean?” It’s a pretty loaded question for a spectrum diagnosis. I usually start with explaining the behaviors, instead of pulling out statistics and handing out pamphlets of information. My son, as an example, had a hard time transitioning from one thing to another, one place to another, and had extremely limited eye contact…at least initially. I explained these challenges as being a part of the spectrum…at least for him.

    After using examples of some of his behaviors, I would then segway into some of the “basics”, like social skills and restricted or repetitive behaviors. Because of his lack of eye contact, as an example, my son might not respond in ways that a typically developing child would. He had a severe speech delay, and with his lack of eye contact, social situations were difficult. He also has a restricted diet, so if we went to a birthday party of a social event, when other children were eating pizza my son may be eating Chex Mix. Vocal stims may be a part of everyday life, or wanting to talk for hours on end about dinosaurs.

    Autism is a spectrum, so explaining to them that not all people exhibit these behaviors, but these are some common ones. This may not fit their stereotype of what autism is, so you might be met with some resistance. I didn’t have this experience of resistance (at least nothing major), but I’ve heard from families where even immediate family members struggled to understand, to accept, and to move on. Give them time to process. Just like you are processing, they need to as well. Just like you may have had feelings of sadness, anger, frustration – they could be finding a way to make sense of it. This may take a lot longer for some people, but be patient. They’ll find their way. In the meantime, ask them if they will support your child, because they are important. Diagnosis or not, your child deserves to be loved unconditionally. I’ve even heard of some family members (immediate and extended) being involved with doctor visits. It has helped them understand a little more about what is going on, and how they can support.

    Many people ask why a diagnosis is even needed – that you don’t need to put a label on your child. Well, I never wanted to label my child, but apparently insurance companies do. Without a diagnosis, my son wouldn’t have had the services he has had…the services that has allowed him to reach his potential. If it takes a label (a diagnosis), then so be it. I’ve also never whispered the word “autism”, afraid that it might hurt my son’s feelings. I’ve actually spoken of it as a super power of sorts. Through truth and understanding, I feel like my child has become stronger, and in turn can be stronger for others that may not be. That’s just a choice that I made in our journey.

    Another question, that I still fear years later, is “what caused it”? Uuuuuuugh. I can’t tell you just how much I hate this. There are SO many studies, SO many opinions, that it’s even a difficult topic of conversation within the autism community itself. Short story is – they don’t know. A slightly more expanded version is – it’s a neurodevelopmental disability, and it’s not caused by bad parenting. Maybe I’m still a little sensitive to this question due to the fact that I spent a whole year after receiving my son’s diagnosis researching on ways to blame myself, and I never want others to feel this way. I wish that I had known then what I know now. I’ve heard from others that they wish they had taken some time away from the internet, because just as the internet gives us so much valuable information, there’s a lot of guck out there as well. The fact is, I love my son, with or without a diagnosis, with or without a reasoning for what causes autism. He’s beautiful, and so, so special.

    No matter how you share an autism diagnosis, make sure you find your people that “get it”. The people that need no explanation, but rather a want to help support you and your family. Sometimes, it might not be family members. Sometimes it’s those strangers that you meet along that way that will give you the largest support. People like you. I’ve had the pleasure and privilege of making so many friends through My Autism Tribe and this podcast. My son is what keeps me going, but you are also what keeps me going, and I hope that I’m helping support you. We’re in it together, one voice made stronger. Much love to you all. Thanks for being a part of My Autism Tribe, and I’ll see you…next year, in 2020!


    Autism, Art & Honesty Nov 25, 2019
    Show notes

    EPISODE 44: AUTISM, ART & HONESTY

    INTRO:

    Hey, everyone! Thanks so much for joining me today. I’m speaking with Megan Heinz, an autism mom who has been dedicated and passionate about creating accepting and inclusive environments for her son on the spectrum. She’s also gonna share a super cool way that she has been able to connect with her son through art.

    And, also a reminder, if you’re enjoying this podcast, please rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks for listening!

    SEGMENT:

    I first connected with Megan Heinz on her Instagram page entitled “Above Typical”; a page that she created to inspire others and connect through autism, art and honesty. A place to laugh and to learn. She shares the real, un-sugarcoated everyday life of her family, and I love how she has taken a somewhat unique approach in bonding with her son through art. I can’t wait for her to share her story on how she fell into this. Please welcome this episode’s amazing guest, Megan Heinz.

    CONCLUSION:

    Parents have a huge influence over a child’s development and happiness. But this influence can look extremely different from family to family. No textbooks, no manuals, but each family trying to figure out how to best parent their child that has come into this world with their own temperaments, their own personalities, and their own strengths and weaknesses. We teach our children, and they teach us. That’s what is so awesome! To everyone out there putting forth what I know to be an amazing effort to support our children, thank you. Keep up the great work, and thanks for being a part of My Autism Tribe. See ya next week!

    ADDITIONAL INFORMATION:

    www.abovetypical.com

    https://www.instagram.com/abovetypical/

    https://www.facebook.com/abovetypicalfamily


    Autism Parenting...and a Side of Fries Nov 18, 2019
    Show notes

    EPISODE 43: AUTISM PARENTING…AND A SIDE OF FRIES

    INTRO:

    Hello, my fellow tribe members! Thanks for joining me today. I’m gonna start right off and say this week’s episode is gonna to make you laugh your socks off. Today, I’m speaking with Eileen Shaklee, also known as “Mama Fry” to all her blog followers. She’s the proud mom of a teenage son with autism, and shares with us how humor (and a side of fries) has helped her family in everyday life.

    And if you’re enjoying this podcast, please rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thank you so much for listening!

    SEGMENT:

    Autism can be isolating at times. There are great days, and then the not-so-great days that leave us scratching our heads and questioning if we’re doing enough…if we ARE enough. But one thing that I believe is super important is finding the humor in all of it. Sometimes it’s difficult to laugh when everything around you is hitting the fan and causing what feels like mass destruction…but you CAN. Eileen Shakle started a blog several years ago as an outlet to connect with others that were experiencing the same things, and people…she’s FUNNY. I love her viewpoint on everyday life, and I know that you will, too. Please welcome, Eileen Shaklee…or as many know her…”Mama Fry”.

    CONCLUSION:

    Don’t get stuck in the trenches. Sure, it’s important to experience emotions, vent frustrations, but take the time to find goodness every day. Those little things that you can laugh about…maybe it’s at a later time rather than in the moment…but those things or people that will make you chuckle. Life’s too short to stand under a rain cloud all the time. Find the sunshine. Thanks for being a part of My Autism Tribe, and I’ll see ya next week!

    COOL ANNOUNCEMENT: My Autism Tribe has been recognized in the "Global Top 20" autism podcasts on Feedspot! https://blog.feedspot.com/autism_podcasts/

    ADDITIONAL INFORMATION:

    www.autismwithasideoffries.blogspot.com

    https://www.facebook.com/AutismWithASideOfFries/

    https://www.instagram.com/autismwithasideoffries/

    https://www.twitter.com/frenchfryinc/


    A Family's Autism Journey Nov 13, 2019
    Show notes

    EPISODE 42: A FAMILY’S AUTISM JOURNEY

    INTRO:

    Hi, there! Thanks for joining me. Today, I’m speaking with Laurie Hellmann. She hales from Indiana, and is a proud autism warrior mom who recently wrote a memoir documenting the journey her family has been on since her 16 - year old son, Skyler, was diagnosed with autism in 2006. I’m so happy to have met yet another powerful advocate, and I hope that you enjoy listening.

    And you’re enjoying this podcast, we kindly request that you rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks for listening!

    Today’s podcast is brought to you by Audible – get a FREE audiobook download and 30 day free trial at www.audibletrial.com/MyAutismTribe. Over 180,000 titles to choose from for your iPhone, Android, Kindle or mp3 player.

    SEGMENT:

    Laurie Hellmann has spent the last 14 years fiercely navigating through therapies, medications and countless other medical and personal challenges with her son, all while continuing to fight for and be the voice for other families with a loved one on the autism spectrum. She also has a 14-year old neurotypical daughter who is just now starting to express that being a sibling of autism is not for the weak because it means that every day is a whirlwind and you never know what to expect.

    Most recently, Laurie started a podcast called “Living the Sky Life” to further document and bring a voice to the often-unspoken struggles that families with special needs children, and specifically teenagers, face day to day. Let’s welcome Laurie!

    CONCLUSION:

    The roles of advocacy can have many forms, but all are important. There are those of us who are talkers, those of us who are the silent giants working magic behind the scenes, but all of us who spend countless hours advocating for those we love – and some we have yet to meet. I’m so proud of each and every one of you, for your dedication, for your heart, and for your support. Thanks for being a part of My Autism Tribe, and I’ll see ya next week!

    ADDITIONAL INFORMATION:

    Facebook: https://www.facebook.com/livingtheskylifeautismjourney

    Instagram: https://www.instagram.com/living_the_skylife_autismtrip

    Email: livingtheskylife.autismjourney@gmail.com


    When I Feel Defeated Nov 04, 2019
    Show notes

    EPISODE 41: WHEN I FEEL DEFEATED

    INTRO:

    Hello there! Today, is a solo episode. Just me, talking about my feelings of defeat. We’ve all been there, am I right? Maybe you’re there right now, listening and thinking, “is this going to be another person telling me how to not feel defeated, giving me a checklist on ways cope?” Nope. None of those. I’m just here sharing my feelings on defeat, and offering my recent viewpoint on this feeling.

    And if, by chance, you feel like you’ve connected in some way on what I’m sharing, I’d love for you to take one minute to rate and review this podcast. Maybe even share it with a friend. This podcast is one way that we make our voices stronger, and to connect with those that are traveling alongside us in our crazy journey of parenting. Thanks for listening.

    SEGMENT:

    Let’s face it, parenting is tough stuff. You can go into any bookstore or newsstand and peruse hundreds of books and magazines with “Tips on How to Be an Exemplary Parent”. Try Googling “parenting”. Have you ever tried this? Just type “parenting”. You’ll be introduced to millions of articles, studies, Amazon links, parenting blogs, you name it – everyone is trying to figure it out. Professionals are telling you the parenting style that creates the most well-adjusted children, and I even read an article recently that said for better or worse, parenting changes your child’s DNA. Think about that. It’s no wonder that we have feelings of defeat Every. Single. Day. And let’s talk about Pinterest. Have any of you tried to make these elaborate birthday cakes that have a simple 5 Steps to a Magical Creation, only to have your child ask what it is that you just created? Raise your hand…you know who you are, and I’m included.

    Granted, there are days when I say to myself, and even out loud with a pat on my back, “Susan, you know what? You’re not a terrible mom. You are a downright ok-ish mom”. Did you hear that? “Ok-ish”. Why is it that we don’t allow ourselves to say that we are awesome? That we are absolutely slaying this whole parenting thing? Well, let’s talk about stress and fatigue for a hot second.

    Stress and fatigue enter (and sometimes lingers) in our lives when our demands exceed the expectations and resources available to us. And let’s face it, Pinterest has not helped, and as special needs parents, we often struggle to find enough resources available to help us. It’s hard to manage a home with an increasingly amount of clutter building, a list of chores longer than the Great Wall of China, work responsibilities, holiday preparations, school functions. I’ve read blogs and watched TV shows on how to create more organization, like Tidying Up with Marie Kondo (which by the way, is she even real…is someone really THAT organized)? Something that I’ve come to realize…and just recently…is that there is no ONE cookie-cutter approach to all of it. I’m tired of trying to fit in the box that social media and TV shows tell me I need to be in in order to feel like a great mom, a worthy friend, a socially-acceptable human being. Sometimes that box just doesn’t feel right. Plus, our social norms are constantly changing, right? What Hollywood is defining as beautiful and the articles that are telling us what is right will inevitably change. For example, remember when everyone freaked out years ago trying to eliminate ALL fat from our diets. Everything on the shelves in stores turned to “Fat Free”? Now, it turns out that we actually need fat in our diets – the healthy kind, of course. I challenge you to go down that Google rabbit hole.

    I tell my son all the time that we are all different, and differences aren’t bad, but beautiful. So why can’t I take these words and apply them to my own life? Why is it that I keep coming back to these socially-created definitions of perfection? It always leads me to the same abandoned house, filled with feelings of defeat. I’m so tired of it. I’m tired of even acting like I have all my stuff together…because I don’t. And I’m not afraid of admitting that to ANYONE. Maybe this is what it’s going to take to change my mindset…like a detour from the path I’ve been traveling. There will be days that are easier, and then there will be days where I feel absolutely freaked out because it’s hard, hard, hard work shaping another human being, my child, my heart, the very reason, in fact, that I feel like most days I’m still breathing.

    So, let me take a look at another way of viewing the stress and feelings of defeat. What if, the whole parenting thing is not just about shaping my child, but shaping me as well? That I’m actually becoming a better woman, a better parent, just by being a parent and the challenges (and celebration) it gives. I can’t tell you the number of times that I’ve given a stink eye to someone who told me “what doesn’t kill you makes you stronger”. No one wants to hear that from someone else, but maybe I can tell myself that. The stretching and growing from parenting is actually a great thing. It’s a gift, a blessing, that my home needs me.

    Let’s look at defeat as power. I think about the times, when I was a child, and even as an adult, where I failed. It did build strength. It did build character, and almost a stubbornness to overcome – to succeed and win. I come from a long line of STRONG women – women that didn’t take “no” for an answer, trail blazers in their time. They weren’t strong because they never failed. They became strong because they experienced defeat, more times, I’m sure, than they admitted. I’m woven from their cloth – a piece of their patchwork quilt.

    Most of us cling to the idea that skill comes naturally. We’re born with it. Either we’re good, or not good, at something. Well, that’s simply not true. Even people that are born gifted have to work hard to hone their ability. We’re not born as parents. We have parents when we are born. These trials we experience are honing our ability to become better.

    CONCLUSION:

    So, let’s all take the time to lift each other up, to give each other high fives, to smile as we’re passing by that person in the grocery store. We all have feelings of defeat, and we’re just honing our ability to become better. For ourselves and for each other.

    Thanks for taking the time to listen, and for being a part of My Autism Tribe. You all are very much appreciated. See ya next week!


    An Autism Mom's Dedication to Nutrition Oct 28, 2019
    Show notes

    EPISODE 40: AN AUTISM MOM’S DEDICATION TO NUTRITION

    With Autism Mom Crystal Jordan of “Foods Four Thought”

    INTRODUCTION:

    Hey, everyone! Thanks for joining me today. Today we’re speaking with Crystal Jordan. She’s the proud mother of an amazing son on the autism spectrum, and she has been working tirelessly on something pretty cool that has provided her son with awesome results. She’s a dedicated mama!

    Also remember, if you’re enjoying our podcast, if you could take some time to rate and review us wherever you listen to podcasts, and share it with a friend. That’s how we make our voices stronger. You can also find us as My Autism Tribe on Facebook, Instagram, Twitter, and YouTube. And as always, thank you so much for listening!

    SEGMENT:

    Most of us have been in those states of desperation, and likely many of us are still there, where we are working on the perfect formulas of therapies, supplements, and diets that will work for our loved one on the spectrum. Asking ourselves, “What if we do this therapy, with this vitamin, and eliminate this from their diet? What if we skip this therapy, but go to this doctor?” I literally have binders of information and spread sheets that I’ve collected in our short 3-1/2 years on this autism journey. Some may have viewed it as an obsession, but I don’t think so. I view it as dedication – to make sure my son has the best there is so that he can reach his full potential. I view it as LOVE. Today’s guest is Crystal Jordan. Her passion to provide help for her son is inspiring, and I can totally relate to the love she feels for her little one. Please welcome Crystal Jordan.

    CONCLUSION:

    Sometimes those states of desperation can provide us with information or insight into what our children or loved ones need. It takes time, dedication, and patience but it’s all so worth it. Never stop trying, always have hope, and dig deep. I believe in everyone – keep up the great work and thanks for being a part of My Autism Tribe. I’ll see ya next week!

    ADDITIONAL INFORMATION:

    https://www.foodsfourthought.com

    https://www.facebook.com/foodsfourthought/

    https://www.instagram.com/foodsfourthought/


    Autism-Friendly Businesses Oct 21, 2019
    Show notes

    EPISODE 39: AUTISM FRIENDLY BUSINESSES

    w/ guests Melanie West and Monica Cooper with FEAT of Louisville

    INTRODUCTION:

    Hey, everybody! Thanks for joining me today. We’re speaking with Melanie West and Monica Cooper – both of an organization called FEAT of Louisville and the initiative of Autism Friendly Business in the state of Kentucky. They’re doing some really cool things, so stay tuned.

    And remember, if you’re enjoying our podcast, please rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks so much for listening!

    SEGMENT:

    FEAT of Louisville, FEAT being an acronym for “Families for Effective Autism Treatment” is a non-profit organization that actively supports and funds autism programs for the entire family. Created for families by families, FEAT of Louisville is dedicated to easing the autism journey through ongoing support, education and programs. FEAT was founded in 1999 by a small group of parents searching for answers to their children’s complex medical and educational needs.

    Melanie West joined FEAT in February of 2018 as the Autism Friendly Business Initiative Program Manager, and Monica Cooper is an autism parent that is now serving as the Community Outreach Coordinator. These ladies are powerhouses, and I can’t wait for you to listen of the impact they are making in the autism community.

    CONCLUSION:

    Organizations like FEAT with program initiatives like Autism Friendly Businesses are doing amazing things for entire communities. It’s our goal to make our communities more inclusive, right? To make people aware and accepting of everyone, right? A huge thanks to FEAT of Louisville for doing such great work, and really changing the tide through their education and support. Keep it up – we’re rooting for you! Thanks again for listening, and for being a part of My Autism Tribe. I’ll see ya next week!

    ADDITIONAL INFORMATION ABOUT FEAT, MELANIE, AND MONICA:

    www.featoflouisville.org | www.autismfriendlybusiness.com

    FEAT Newsletter | Facebook | Instagram

    AFBI Facebook | AFBI Instagram

    Monica's bio:

    My name is Monica Cooper. I am a mom of three boys, Isaac, Ian and Elijah. Isaac and Ian both have Autism. When we received the first diagnosis over 8 years ago my husband and I were not sure what to do or where to go for help. A friend told us about FEAT and the programs and support that they offered. We immediately decided to get involved. At first this was a slow process for us because we were still trying to navigate and wrap our minds around what Autism was. Two short years later our next son would receive the same diagnosis. This hit us pretty hard and we soon discovered we needed to get off of our “island” and needed to surround ourselves with other families just like us that were all on the same journey. FEAT allowed us to take our children swimming, to the Science Center to the park and even participate in our local ST. Patty’s Day Parade in a fun, yet safe environment. My children have been able to go out into the community and feel loved and accepted by other families. FEAT has not only given my family a sense of belonging, but it has ignited a passion within me to help bring others families that have children with Autism together. The families that are a part of FEAT have become an extended family to me. I want to give families the same HOPE, that was given to me.

    Melanie's Bio:

    Melanie earned her B.A. in Communications from the University of Louisville. After a career in the banking industry with Fifth Third Bank and JP Morgan Chase she took a different career path to become the CEO of her family. Melanie continued to be involved in the community volunteering at Dunn Elementary and actively serving on their PTA Board. Being a Louisville native, she is passionate about this city and directly impacting families.


    The West family has been part of the FEAT movement for years, volunteering and participating in the 5K and FEAT Galas. Melanie joined FEAT of Louisville in February 2018 becoming the Autism Friendly Business Initiative Program Manager. “I am truly passionate about engaging and partnering with local businesses to bring Awareness, Acceptance, and Appreciation for the vast Autism Community.”
    In her free time, Melanie enjoys spending time with her family, cooking, B.You Fitness, hiking, dancing, skiiing, traveling, the beach, and an active member of Northeast Christian Church. Melanie is married to the love of her life Mark and has two children.


    The Importance of Self Care for Autism Parents Oct 14, 2019
    Show notes

    EPISODE 38: ROB GORSKI (The Autism Dad)

    “The Importance of Self Care for Autism Parents”

    INTRODUCTION:

    Hey, everybody! Thanks for taking the time to join me today. We’re speaking with Rob Gorski – an autism dad with a strong voice in the autism community. Over the years, he’s amassed upwards of one hundred million views on his blog, and has received tons of awards for both writing and his work in the autism community.

    And remember, if you’re enjoying our podcast, please rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks for listening!

    Today’s podcast is brought to you by Audible – get a FREE audiobook download and 30 day free trial at www.audibletrial.com/MyAutismTribe. Over 180,000 titles to choose from for your iPhone, Android, Kindle or mp3 player.

    SEGMENT:

    Today’s guest, Rob Gorski, is the proud dad of three amazing children on the autism spectrum. He began a blog in 2010 as a means of coping with everything that was going on – the raw emotions, true happiness and heartbreak. He’s brutally honest, which I absolutely love. His mission to show others of similar circumstance that they are not alone is definitely something that I can connect with, as most of us would agree. We want to make a difference. We want the best for our children. We want the whole world to know just how much compassion we have for the autism community. It can be exhausting though…leaving us questioning how to take care of ourselves, too. What does self-care look like, and what can we do about it? Please welcome, my friend Rob Gorski.

    CONCLUSION:

    We all experience exhaustion, feelings of being defeated, not good enough. That’s why self-care is so important. Those who have experienced compassion fatigue describe it as being sucked into a downward spiral, not knowing how to stop it, so they do what they’ve always done…continue to give and give and give until they’re completely tapped out. Our families need us to be playing our A-game. We need to take time to fully recharge. I’m making a commitment to everyone here to take better care of myself, so that I can be even better for my son. I challenge you to do the same. It’s not selfish to take care of ourselves. It is needed. I expect everyone here to hold me accountable, and I’ll be here rooting for you. Thank you so much for being a part of My Autism Tribe. I’ll see ya next week!

    CONNECT WITH ROB:

    https://www.theautismdad.com/

    https://www.facebook.com/robgorski78

    https://www.instagram.com/theautismdad/

    https://twitter.com/The_Autism_Dad


    My Child Has Autism: Do Not Bully Him Oct 07, 2019
    Show notes

    EPISODE 37: “MY SON HAS AUTISM: DO NOT BULLY HIM”

    INTRODUCTION:

    Hi, Friends! Thanks for joining me today. It’s just me. October is National Bullying Prevention month, so I thought I would do a segment specifically on my thoughts on this subject, and some of our recent experiences. Since my son started Kindergarten this fall, a subject that I’ve been especially interested in on our journey has been bullying. As a parent with a child on the spectrum, it’s been on my mind a lot. Stay tuned for some of my thoughts, along with some advice that I’ve heard and read about.

    If you’re enjoying our podcast, please rate and review us wherever you listen to podcasts, and share with a friend. That’s how we make our voice stronger. Thanks for listening!

    Today’s podcast is brought to you by Audible – get a FREE audiobook download and 30 day free trial at www.audibletrial.com/MyAutismTribe. Over 180,000 titles to choose from for your iPhone, Android, Kindle or mp3 player.

    SEGMENT:

    There have been moments when I’m with my son where I have witnessed (and intervened) on other children…and sadly some adults…bullying him. It absolutely rips my heart out and shakes me to my core. Thankfully, in those moments, I’ve been with him…so then my thoughts turn to “What if I hadn’t been with him? What would have happened? Would he have stood up for himself, or would someone else have intervened?” We can’t be with our children every minute of every day, and we all know that words (good and bad) can be carried with someone their entire life. Of course, bullying doesn’t just happen to individuals on the spectrum, it doesn’t just happen to children…but what can we do about it?

    Let’s first start with the very definition of “bullying”. I’m talking about the Webster’s definition. To bully someone means: seek to harm, intimidate, or coerce (someone perceived as vulnerable). The facts tell us that children with disabilities are much more likely to be bullied than their nondisabled peers. When looking within a school setting, one study shows that 60 percent of students with disabilities report being bullied regularly compared with 25 percent of all students. As parents and caregivers, we have a right to ensure that the school our child attends provides a framework of protection. All children have a right to receive a free appropriate public education (FAPE) in the least restrictive environment and free from disability-based harassment.

    Personally, I can remember (middle school primarily…because, let’s be honest, those are tough years for any child) when I was bullied. I was backwardly shy, glasses, braces, a bad perm, good student…you name it…I was the poster child that screamed “nerd”. I got made fun of…and I cried…sometimes in a school bathroom stall, in the gym locker room, at home. It sometimes made school not so fun. I carried a lot of that with me for a long time, and though I know I can’t protect my son from all of the nastiness that life can bring, I do want to make sure that I equip him (and others) on handling situations like this.

    Bullying, I used to believe, used to mean meeting someone on the playground and beating them up, or stealing someone’s lunch. As I’ve grown older and have become more educated and aware, I’ve recognized there are many complexities and various forms of bullying. Bullying not only includes direct contact or physical assault, it can be milder and more indirect: social exclusion, subtle insults, teasing, and the spreading of rumors. Laughter at another person’s expense is a form of bullying. And now that most individuals have online access, we have issues with cyberbullying. I have to admit, I’m so glad that social media wasn’t around when I was growing up.

    At my son’s school, they have a couple of apps they use to update families on special events, reminders, updates on their child, pictures from their day. They’re really awesome, and my son’s teachers do an incredible job of keeping the lines of communication open. Alex seems to be really happy at school. But one day recently, a video was posted on one of these apps that showed the entire class singing a song they had learned. I was watching it with Alex, and was commenting on how sweet and special this video was. It was then that he pointed to a specific girl in his class. Now, please note that Alex is now verbal, but can still very much struggle with piecing together sentence structures, especially when it comes to more (as I say) colorful language. He points at this girl and says, “She squeezed my arm and called me stupid.” I immediately replayed the video, and again he pointed to the same girl and said the same thing. I froze. This was the first real conversation that I had had with Alex about bullying. We’ve talked a lot about self-advocating, saying “stop” when he doesn’t want something, but we hadn’t (before this time) talked specifically about hurtful words that people can say. I asked him what he did, not sure if he was going to be able to describe it. He said that he told his teacher. I told him that was exactly what he was supposed to do. I told him that her words were wrong, that he wasn’t stupid – that he was, in fact, very smart. I now have an open dialogue with his teacher, and we are both working on dialogue with Alex. His teacher did respond appropriately when Alex told her, so we’re on a good path, but my thoughts still go back to, “What if she hadn’t? What if Alex wasn’t able to tell her?” I still have a fear, but I can now rest a little easier knowing that it was handled (this time) appropriately. The adult response is so very important, and it’s important that adults know how to talk with someone in a bullying situation. I’m not sure that I handled it exactly right, as I’m still learning, but the child should know that it is never their responsibility to fix a bullying situation. They should seek the help of an adult, and I’m beyond proud that Alex did just this.

    You see, Alex loves to learn. He loves school, and I know in a great environment he thrives, but research has shown that bullying can negatively impact a child’s access to education and can lead to:

    -School avoidance and higher rates of absenteeism

    -Decrease in grades

    - Inability to concentrate

    - Loss of interest in academic achievement and an

    - Increase in dropout rates

    Students with disabilities have legal rights when they are a target of bullying, and most states even have laws that address bullying – specifically to students with disabilities. School districts can have individual policies that address how to respond to bullying situations. In our case, we were provided a packet of information from our local district on their policy on bullying. If you’re not sure, contact them and request a written copy.

    Most of you are probably familiar, if your child is in school, on IEPs (Individualized Education Program). Students with disabilities, who are eligible for special education under the Individuals with Disabilities Education Act (IDEA) will have one of these. The IEP can be a helpful tool in a bullying prevention plan, and if bullying is becoming an obstacle to a child’s education, then it can be incorporated into their IEP. There could be goals for social skills, speech and language skills, and self-advocacy skills written in the IEP so they know how to address a bullying situation. There is a woman by the name of Dr. Michelle Borba that has even designed a prevention approach that she has labeled CALM. It’s an acronym, C-A-L-M, of simple rules that can be taught to students with autism:

    -The first step in the CALM approach, the “C”, is to “Cool Down”. Teach your child to recognize stress signals like sweaty hands, rapid heartbeat) and learn calming strategies like deep breathing.

    - The second step, the “A”, is to “Assert Yourself”. Part of the social skills curriculum can be teaching assertive body language. This doesn’t mean to start throwing punches. Role playing and video modeling can assist in teaching non-verbal body language that can deflect bullying attempts.

    - The third step, the “L”, is to “Look Them in the Eye”. Eye contact can be challenging for some students with autism, but using visual supports can be beneficial in teaching eye contact during a bullying attempt.

    - The last step in the CALM approach, the “M” is “Mean It”. Language scripts can be taught such as “stop that”, “leave me alone”, or “get away from me”.

    But maybe the most important thing in all of this discussion about bullying, is having your child know they are loved. We all have bad days. We have all been bullied, and they are not alone. I know, at least from my own personal experience, that we often believe we are the only one this is happening to, and that no one else cares. That couldn’t be further from the truth. It’s not up to one person to end bullying, and there are individuals, entire communities and organizations that care a lot about this very specific subject. No one deserves to be bullied – absolutely no one. All people should be treated with respect, no matter what, and we all have a responsibility to work together on creating positive change. This is not about, “If I have time, I will”, “If it’s my child, I will”, no. It takes a village. It takes My Autism Tribe. Thank you for being a part of mine, and for walking beside me as I try to make a difference for not only my son, but for others. Much love to everyone. See ya next week!


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