Kids & Family

Educating, Supporting and Empowering the Autism Community.

Episodes

EPISODE 48: AUTISM ADVENTURES (WITH BIG E)

With Jacqui Folks

 

INTRO:

Hi there! Thanks for joining me today. I’m speaking with a busy mother of three young men, Jacqui Folks. Her middle son, Ethan, has autism, and she’s going to share her family’s story, along with some resources that she has been working on for the autism community.

I also want to let you know that this week will mark the one-year anniversary for the My Autism Tribe podcast. It seems like yesterday that I started it, but it’s been a whirlwind and here I am one year later…still breathing…high five!

If you haven’t had a chance to rate or review the My Autism Tribe podcast, it would absolutely be cool if you did. It helps people find our podcast – especially on Apple Podcasts. Thanks for listening, as always, and for going on this crazy journey with me. You’re the best!

 

SEGMENT:

Jacqui Folks son was diagnosed in 2003, a time when there were little resources out there for parents. Think about all the resources that we have now, including podcasts! She learned almost everything from books, but there was also something that she felt that was missing. I’m excited for her to share what that was. Please welcome Jacqui Folks.

 

CONCLUSION:

I love hearing inspirational stories from those in the autism community. We are a group of fighters ya know, and I mean that in a good way. A bunch of mama and papa bears, and fearless advocates, both on and off the spectrum that are clawing our way for better awareness and inclusion in our communities. It’s so awesome. Thanks for being a part of My Autism Tribe, and I’ll see ya next week!

 

JACQUI’S BIO:

When my son was diagnosed in 2003 there were little to no resources out there for parents. I learned almost everything I know from books. However, there were no children’s books I could share with him for his learning experience. It was always suggested to me to write social stories, and I did, but nothing is more catching than a good children’s book.  

Over the years I have kept them and my dream was to have a series of Autism friendly books, with a main character who has Autism, for spectrum kids to listen and learn from. Well, my dream is coming true. Book one in our series is here!! These stories are something I longed for as I was raising my son. They would have been so helpful to just pick up and read before each life event. I would have used them daily at home, in the community and in the classroom. I feel confident that they can help others in the future.

Here are a few reasons why:

-Simple, short, direct and honest text that is actually used in the home.
-Reference to visuals, picture boards
-The same returning character with a simple and fun name.
-The same start and end to each book, no matter how different the story or message is. Repetition is key!
-There are several stories about Autism but very few series. In my research I only found two and they were short series not based on daily life skills.
-My series does help with daily life skills but with fun illustrations and a relatable, adorable, supportive main character.

-A lot of parents and educators do not know how to access or write social stories. Why not provide them for these families and educators?

 

Awarded a top book of 2019 by Autism Live and featured in their 2019 Holiday Toy & Gift Guide:

https://www.facebook.com/adventureswithBigE/

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January 13, 2020

FUBAR: Autism Parenting

EPISODE 47: FUBAR: Autism Parenting

With Jessica Temple

 

INTRO: 

If you spend just one minute on Google searching for parenting memes, you’ll be inundated with hilarious quotes and pictures on how to survive parenthood. It’s something that us parents get a few good laughs from, while we’re silently screaming inside. How many times have we questioned ourselves, “Will I get through this?”.

My guest today, Jessica Temple, is the creator of a podcast called FUBAR: Surviving Parenthood with Special Needs Kids, and is also a board-certified clinical neuropsychologist. Her podcast is all about creating a non-judgmental space to realize that we all actually WILL live through this, and offer tips on making the survival of parenthood an actual possibility. It’s hilarious. Jessica and her husband have two children with special needs. Their oldest has autism, ADHD, sensory processing disorder, and developmental delays, and their youngest child had a perinatal stroke and has developmental delays. It’s a complete joy to welcome Jessica to our show today.

 

CONCLUSION:

There’s no perfect way of parenting, and as Jessica points out, there are always “fails”, “nails”, and “comical tales” along our journeys. Learn to embrace them, and know you are not alone. We’re all in it together. Thanks for joining me on my journey, and thanks for being a part of My Autism Tribe. See ya next week!

 

Additional information: 

Website: www.fubarpod.com

Twitter: https://twitter.com/fubarpod

Facebook: https://www.facebook.com/groups/fubarpod 

 

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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.
Play Now
December 2, 2019

Sharing an Autism Diagnosis

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!

Play Now
November 25, 2019

Autism, Art & Honesty

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

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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/

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November 13, 2019

A Family’s Autism Journey

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

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November 4, 2019

When I Feel Defeated

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!

Play Now

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/

Play Now
October 21, 2019

Autism-Friendly Businesses

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.

Play Now

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

Play Now

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!

Play Now

EPISODE 36: RON SANDISON (Self-Advocate)

An Amazing Journey with God…and Autism”

 

INTRODUCTION:

Hey, everyone! Thanks for joining me today. We’ll be speaking with Ron Sandison – a powerful self-advocate. He works full time in the medical field and is a professor of theology at Destiny School of Ministry. Stay tuned for his story!

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, Ron Sandison, is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House and Thought, Choice, Action. He has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes. Whoa. He frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their cute, 2-year old daughter, Makayla Marie. I’m so excited for you guys to listen to his story! Let’s give a warm welcome to Ron!

CONCLUSION:

Like many children with autism, Ron lacked the ability to decode body language and interpret social clues, which resulted in ruthless bullying by his peers. If daily routines were altered, he experienced painful meltdowns. Things really started to change when he discovered his special interest in track. He, along with his amazing support system, never gave up. Now, thanks to the help of his parents and the grace of God, he is living his dream working as a professor of theology, serving in the medical field, and enjoying life as a husband and father. Dreams come true, people. Stay the course, don’t lower your expectations, and keep your eyes open and bright for the future. Sending much love to all our listeners. Thanks for being a part of My Autism Tribe. See ya next week!

ADDITIONAL INFORMATION:

ABOUT RON: Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of American. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House and Thought, Choice, Action. He has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes.

He frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a baby daughter, Makayla Marie born on March 20, 2016. You can contact Ron at his website http://www.spectruminclusion.com or email him at sandison456@hotmail.com

COMPLETE BIO: My development began normally and continued until I was eighteen months old. At that time, I began to regress rapidly. I lost my ability to communicate with words, and I ceased to engage in eye contact, a skill I had previously learned. (About 20% of children with autism experience a similar period of regression.)

When I entered kindergarten, the Rochester School specialists labeled me emotionally impaired. My mom refused this label, informing the professionals, “My son’s disability is not emotional but neurological.”

She diligently researched the top professionals for learning disabilities and paid to have me tested. Neuropsychologist Dr. Jerel E. Deldotto from Henry Ford Hospital confirmed that my disability was indeed neurological.

Educational specialists and doctors informed my parents that I would probably never read beyond a seventh grade level, attend college, or participate in athletics. Even so, my mom was determined to help me to excel in life. She empowered me to develop my unique gifts for independence, employment, and relationships.

As Dr. Temple Grandin said, “In special education, there’s too much emphasis placed on the deficit and not enough on the strength.”

The Prairie Pup Years

When I was seven years old, my mom gave me a stuffed animal of a prairie dog for Christmas. This toy sparked a special interest in prairie dogs; I could tell you every detail about prairie dog life.

In the 80’s most boys played with GI Joe, He-Man, Star Wars toys, Atari video games, or even a Teddy Ruxpin. But I carried around a stuffed prairie dog named Prairie Pup.

As my Special Ed teacher Ms. Milne once told my parents, “Ron always carries an animal book in his right hand and Prairie Pup in his left.”

My mom harnessed my special interest in prairie dogs and animals to teach me reading and writing skills. As a professional artist she taught me with art, drawing pictures of prairie dogs to illustrate concepts.

In fifth grade, I won the Detroit Edison Drawing contest for Oakland County by creating a poster of Prairie Pup and his furry friends. For the prize Prairie and I met captain of the Detroit Pistons basketball team and future Hall of Fame inductee Isaiah Thomas.

In sixth grade, I was deemed too old to carry a love-worn stuffed animal, so Prairie Pup was officially ‘expelled’ from the Rochester public school system.

In my presentations, I joke that it’s a good thing my special interest at the time was a stuffed prairie dog and not a honey-badger. It would have been hard for the school administration to expel an agitated, aggressive, wild beast!

My mother Janet Sandison recalls:

One of my son’s favorite activities was dictating short fictional stories about his stuffed animals and drawing illustrations. I wrote Ron’s short stories in spiral notebooks. Ron drew the main characters: Chatter the Squirrel, Little Gnawing Beaver, Bouncing Bear, and Prairie Pup. I was able to teach Ron new vocabulary through writing and also helped his imagination to blossom. By watching me write, Ron was able to learn reading comprehension and memorized the spelling of words.

During elementary and middle school, I had difficulty developing friendships with peers due to my social awkwardness and sensory issues. If my daily routines were altered, I experienced painful meltdowns. I call my meltdowns, “My honey-badger moments.”

Like many children with autism, I lacked the ability to decode body language and interpret social clues. As a result, I was bullied ruthlessly by my peers.

Star Athlete and Faithful Christian

Everything changed in eighth grade, when I began attending Heart Middle School. That’s when I discovered my new special interest: track. Bullying ceased as I became a star athlete, eventually setting three school records.

In my junior year of high school I received Jesus as my Lord and Savior, and felt that my life was now on the right track, both literally and metaphorically. I made the honor roll two straight semesters, was a star athlete in track, and memorized over 2,000 Scriptures. (I currently have over 10,000 Scriptures memorized, including 22 complete books of the New Testament.)

In the spring of 1994, our school’s 3,200 meter relay team finished 12th in the State of Michigan. As we drove back from the state final, Nate, the anchor on our relay, commented to Coach Budd, “Next year we could be the fastest 3,200 relay but Ron will be past the age requirement!”

I heard the Holy Spirit speak to my heart, saying, “I will make a way for you.” So I said, “God will provide a way for me to compete.”

Since I had repeated kindergarten, I was past the MHSAA age requirement by three months. My family prayed daily for a miracle. As my senior year approached, my mom contacted the MHSAA. In May 1994, they stated, “Due to your son being past the age requirement we will not allow him to compete!” My parents contacted attorneys and learned that a lawsuit would cost over $40,000.

As the cross-country season drew near, the circumstances seemed hopeless. My mom told me, “There’s nothing we can do now but pray and trust God.” In June 1994, I returned from a five mile run and grabbed the Detroit Free Press. On the front page, I saw an article about Craig Stanley, a fellow athlete past the age requirement.

Our situations were remarkably similar. We were both born in May 1975. Each of us had repeated early elementary grades, and we were both cross-country and track runners. My mom immediately contacted his family. Soon we met and joined forces in prayer and advocating.

Unexpected Blessings and New Beginnings

After I rededicated my life to following Christ, I felt a desire to be re-baptized to demonstrate my commitment. (I was first baptized at nine months old, on the same day I said my first word: “Mom.”)

On Sunday June 10, 1994, I was baptized by Pastor Rob. As Pastor Rob lifted me from the water, he said, “I feel this verse is for you: Joel 2:25, ‘I will repay you for the years the locusts have eaten—the great locust and young locust, the other locust and the locust swarm—my great army that I sent among you.’ Your blessings will begin today.”

When I got home and checked the red flashing answering machine, I had an unexpected message from attorney Rick Landau. He said, “I believe that your case will set a precedent for the Americans with Disabilities Act and I want to represent you pro bono.”

As a result, we won our federal case and Craig and I were able to compete during our respective senior years of high school. My 3,200 relay team set the school record; we also ran the second-fastest time out of 182 teams.

During this season, I felt a call to become a minister. Michigan Christian College, now Rochester College, gave me an athletic scholarship for cross-country and track. I finished my freshman year making the Dean’s List both semesters, and I received an academic scholarship to Oral Roberts University. Six years later, I graduated with a Master of Divinity and highest honors.

On December 7, 2012, I married my wife Kristen.

What’s Ahead for the Future

On April 5, 2016, national publisher Charisma House will release my book, A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom. In writing the book, I interviewed over 40 experts in the autism community and over 40 parents who have a child with autism.

Thanks to the help of my parents and the grace of God, I am living my dream working as a professor of theology, serving in the medical field, and enjoying married life with my beautiful wife.

Books

https://www.amazon.com/Parents-Guide-Autism-Practical-Biblical/dp/1629986712

 

https://www.amazon.com/Thought-Choice-Action-Decision-Making-Releases-ebook/dp/B07GNRT3TQ

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September 23, 2019

Autism-Friendly Dentistry

EPISODE 35: AUTISM-FRIENDLY DENTISTRY

With special guest Dr. Wendy Humphrey Van Meter

  

INTRODUCTION:

Hey, everyone! Thanks for joining me today. We’ll be speaking with Dr. Wendy Humphrey. She specializes in providing dental care for children and adolescents, and works with many special-needs kids (and parents) in the most amazing, and comforting way… not to mention that she’s incredibly sweet as a person. 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!

 

SEGMENT:

A trip to the dentist is sometimes not the very favorite thing to do for a lot of children, and even adults, but to an autistic child it can be traumatic. Not only can the visit itself cause distress because it’s not part of the normal routine, but there are strangers putting hands in the mouth, strange sounds, tastes, bright lights, and maybe even a little pain. It’s not always fun, but there are things that you can do to make the whole experience as painless as possible.

Not all dentists are comfortable with children on the autism spectrum, and even some pediatric dentists. There are questions you can ask when deciding if a dentist if the right choice for your family. Today’s guest, Dr. Wendy, in full disclosure, is my son’s dentist. She’s been amazing to work with, and I’m now happy to report that her office is no longer on Alex’s “bad list of places to go.” (laugh) Let’s welcome Dr. Wendy.

 

CONCLUSION:

Parents and caregivers need to be aware that not all dentists have the experience or comfort-level when working with patients on the autism spectrum, and that’s ok. Just make sure to ask the questions that will provide you with information so you can make the best decision. Some of these questions may include: Do you work with special needs kids? Are parents allowed to stay with their children? How do you handle a child’s anxiety? What do you do if you encounter problem behavior during the visit? Finding the right dentist that can connect with your child will help is creating a positive dental experience. Just because you have had problem visits to the dentist, doesn’t mean that this will always be the case. Just keep working at it! Thanks for joining me today and for being a part of My Autism Tribe. I’ll see you next week!

 

ADDITIONAL INFORMATION:

https://www.kydentistry4kids.com/

 

TIPS TO MAKE A POSITIVE DENTIST EXPERIENCE:

  • Create a social story on going to the dentist with pictures.
  • What toothpaste does your child prefer? If this makes the experience better, bring your own toothpaste to the visit and ask the hygienist to use.
  • Perhaps buy some really basic dental instruments for home that you child can handle before the visit. Practice on stuffed animals or use them on yourself.
  • Bring any items that may comfort: iPad, sunglasses, earplugs, lap weight, toy

Ask the dentist if you can come by once a week for a “friendly” visit. This will give the child a chance to become more familiar with the environment

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EPISODE 34:  HEALTH INSURANCE COVERAGE FOR AUTISM

With guest State Lobbyist Bart Baldwin

 

INTRODUCTION:

Hi, everyone! Thanks for joining me today. Bart Baldwin is joining us today. He has over two decades of experience in public policy, lobbying and executive level management in the health care and human services fields, and he’s going to provide some insight for us on public policy decisions, state funding, and how he is providing support to those in the autism community. It’s not the most fun topic, I know, but his experience, I believe, will open your eyes. And as always, if you enjoy 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!

 

SEGMENT:

As we all know far too well, at least for our listeners in the United States, health insurance can be really complicated. Many of us have spent so many hours trying to connect the dots with insurance coverage; it is absolutely so stressful, and I personally have cried so many times to strangers on the other end of the phone just trying to make sense of it all. The insurance landscape has changed drastically over the years, and the good news is (as hard as it may seem some days), we have made some progress. As an example, at least 200 million people now have health insurance coverage for ABA because of the tireless efforts and dedication of advocates across the country. One of these advocates is Bart Baldwin. He is a long-time state lobbyist in the state of Kentucky, and his efforts and advocacy have protected the rights, services, and supports of our autism community. Previously, Bart served as the President of the Children’s Alliance, representing child welfare agencies in Kentucky, and was also the National Director of Regional Public Policy for the Washington D.C. based Child Welfare League of America. Again, I understand this is not the most interesting or fun topic (Bart’s gonna love this lead-in), but I can assure you, in my conversations with Bart, he has opened my eyes to just how much hard work is being done behind the scenes that most of us are completely unaware of. Let’s welcome Bart Baldwin.

 

CONCLUSION:

I’ve had many people reach out to me to ask “which health insurance provides the best coverage”? Whew! There are so many things that can affect coverage based on the specific type of insurance your employer carries, to what state you live in, and the list literally goes on and on. Just know there are people there that can assist you in the navigation of it all, AND they are fighting to protect your family. I always say, “Keep the hustle”, and don’t take “no” for an answer. Progress has been made because of the people that didn’t stop, that didn’t accept no as an answer. We’re all in it together! Thanks for being a part of My Autism Tribe, I’ll see ya next week!

 

ADDITIONAL INFORMATION ON ABA ADVOCATES GROUP:

 

Purpose: to impact public policy decisions, state regulations, state law, state funding and MCO policy decisions to benefit the partners of ABA Advocates and the children and families they serve. Also, to promote the ABA profession to government and community stakeholders.

ABA Advocates is:  A group of provider organizations, individual providers and other advocates who have decided to partner (not in a legal sense) together and pool their funds together to hire Bart Baldwin Consulting to lobby on their behalf and manage ABA Advocates.

ABA Advocates is not:

  • a formalized or legal association or coalition.
  • a 501(C)3 organization or a 501(C)6 organization or any other IRS defined entity.
  • a coalition/association to assist members with business strategy and development.

What ABA Advocates can expect from Bart Baldwin Consulting:

  • Direct Lobbying to Key Decision Makers in the:
  • General Assembly
  • Governor’s Office
  • Cabinet for Health and Family Services
  • Department for Medicaid Services
  • Department for Behavioral Health, Developmental and Intellectual Disabilities
  • Department of Education
  • Medicaid Managed Care Organizations
  • Provide Government Affairs Consultation to include:
  • Public Policy Priority Development
  • Political Strategy
  • Grassroots Advocacy Development
  • Training on effective advocacy and lobbying
  • Management of ABA Advocates to include:
  • Billing and collecting of fees
  • Planning, organizing and staffing routine meetings of ABA Advocates
  • Maintaining routine communications with all partners of ABA Advocates

For more information or to become a part of ABA Advocates please contact Bart Baldwin at (502) 320-1143.

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EPISODE 33: Autism Advocates – The Who, What, Where, When & Why

With guest Jennifer Phelps, Founder & CEO of Engage Behavioral Health

 

INTRODUCTION:

Hey, everyone! Thanks for joining me today. Today’s topic is all about advocacy – specifically as to the Who, What, Where, When & Why of every autism advocate. We’re speaking with Jennifer Phelps of Engage Behavioral Health in Tallahassee Florida, she’s going to share her personal story of the path that lead her to where she is today. It’s pretty cool.  And as always, if you’re enjoying this podcast, we sure would love for you to 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:

Every autism advocate’s story is different. Sure, they share similarities, but the journey of the advocacy (the who, what, where, when, why) can sometimes be vastly different.

Jennifer Phelps founded Engage Behavioral Health in Tallahassee Florida in 2008 after years of studying and working with individuals on the autism spectrum and other developmental disabilities. So that’s the who, what, where. The when started at a young age. In middle school at age 12, she began volunteering to work with individuals with disabilities in Florida, and then she read Catherine Maurice’s “Let Me Hear Your Voice”. Then her nephew received a developmental disability diagnosis, and all of that my folks, was and is her why.

 

CONCLUSION:

Autism advocacy comes in all shapes and colors. Just like individuals on the spectrum, when you’ve met one autism advocate, you’ve met one autism advocate. As we continue to educate, support and empower our communities, reach out and find the different stories. Dig deep to find the who, what, where, when, and why. I guarantee that under every rock is an incredible story of patience, perseverance, dedication and love. Thanks for being a part of My Autism Tribe. See ya next week!

 

ADDITIONAL INFORMATION:

https://www.engagebehavioralhealth.com/

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EPISODE 32: The First Division-I Athlete with Autism: Go Spartans

With guest Anthony Ianni

 

INTRODUCTION:

Hey, everyone! Thanks for joining My Autism Tribe. Today’s episode features Anthony Ianni, the first Division-I athlete with Autism and one of the most sought-after anti-bullying motivational speakers, and for good reason. His story is a powerful one. And as always, 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!

 

SEGMENT:

Bullying is a very real and serious problem that affects all ages, ethnic backgrounds, everybody. However, individuals with disabilities, such as autism, are one of the prime targets for bullies.

Our guest today is very familiar with bullying, because he was a victim, Anthony Ianni, of the Michigan Department of Civil Rights. His story is so inspiring. Anthony played with the legendary coach Tom Izzo while at Michigan State University as the very first Division-I athlete with autism. I can’t wait for everyone to hear his story. Let’s give a warm welcome to the newest member of My Autism Tribe, Anthony Ianni.

 

CONCLUSION:

Anthony repeatedly delivers a consistent message wherever he goes, with whomever he is speaking with, and that is that those on the autism spectrum have the same dreams, desires and goals as anybody else. Anthony’s family made a pledge they would help Anthony be successful no matter what. Well done, Greg and Jaime. We’re so proud of your son Anthony. Thanks for being a part of My Autism Tribe, and I’ll see you next week!

 

ADDITIONAL INFORMATION:

http://relentlesstour.com/meet-anthony-ianni/

 

https://www.nba.com/video/2019/02/10/20190210-beyond-paint-anthony-ianni

 

https://www.forbes.com/sites/tomlayberger/2019/03/31/former-michigan-state-center-anthony-ianni-shares-his-story-of-overcoming-autism-bullying/#42df9652564e

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August 26, 2019

Moving with Autism

EPISODE 31: MOVING WITH AUTISM

“How to help your loved one cope during and after a move.”

 

INTRODUCTION:

Hey, everyone! Thanks for joining My Autism Tribe. Today’s topic is how to help your loved one with autism cope during and after a move. As in, packing up an entire house and moving to an entirely different location. Stay tuned for some helpful tips! And as always, 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!

 

SEGMENT:

My son and I recently moved, and I have to say there’s a reason moving is considered one of the top five most stressful situations in life. I think the other four are divorce, job loss, illness, and the death of a loved one. It’s no secret as to why. Not only is it a complete hassle, but it disrupts your life in ways that push even the most organized, experienced and sane adults to their mental and physical limits. It’s a marathon, people.

And for a child, coping with the stress of moving is even more difficult. Maybe they also have to change schools, maybe there’s a co-occurring trauma happening like divorce. This is a lot, and a child’s still-developing brain is not equipped yet for the challenge of relocating their entire life. Sometime you can see immediate negative responses, like tantrums, outburst, trouble eating, not sleeping, and then others may respond more subtly over time, and can show up as depression or anxiety. We all know that every child is different, but for children with autism, the effects of moving can be even more pronounced. I wouldn’t say that moving is ever a pleasant experience, but there’s a little bit of good news. As a parent or caregiver, there are steps you can take throughout the move to make the experience easier for your child with autism. I’ve moved so many times with my son Alex, that I my process is like a well-oiled machine. Not kidding. This is almost embarrassing, but during the course of Alex’s short life (he just turned 6), we have moved a total of four times – two of those times were out-of-state moves. You get the picture. So…without further ado, let me share some tips with you, in the case that you are planning a move, or possibly anticipating a move.

Create a Narrative

Start with writing your own story. For children with autism, communication is critical. Put simply, you should explain to your child the who, what, when, where, why, and how of moving. Tell them where you’re moving and why. (Just be sure to be age-appropriate, of course) Let them know that the people and things they love and care about will be moving with them. Let them know when you’ll begin the moving process, how long it will take, and how you’ll pack, move, and unpack your things. And the whole time, use a positive tone that conveys that everything is going to be OK. Being aware of the process will allow your child to begin to understand it and, ultimately, come to terms with it.

One of my favorite ways of doing this is to create a social story — or even several stories — depicting the transition. Many children on the spectrum are visual learners who do better with concrete information, as opposed to abstract concepts. That’s why social stories work. They take specific situations that are difficult to grasp, like moving to a new home or changing schools, and explain them. What’s more, they walk the child through the emotions they may feel, how they might expect others to act during the process, as well as healthy responses to each.

When creating your own social story, consider these tips:

  1. Design your story to address one problem, situation, or desired outcome. Use different stories for different aspects of the move, like enrolling in a new school or taking a long car ride to the new home, to keep the story from being too long.
  2. When possible, use real pictures of your family, as well as your names and other personal details. Ask your real estate agent to send you photos from the new home to incorporate.
  3. Be truthful and accurate, but always speak in a positive tone. You should also highlight the positive aspects of the move — decorating a new bedroom, having a bigger backyard to play in, or being closer to activities and people they love, for example.
  4. Use simple language that is easy for your little one to understand and repeat.
  5. Have the child present the story to their family and friends as a way of building confidence around the situation.

In addition to the custom solution a social story provides, you can also use existing books, movies, and music to familiarize your child with the moving process from the eyes of another child, family, or even fictional character. Here’s how:

  • Use your child’s favorite storytellers. If there is a series or character your child already loves, you can probably make a connection between your child’s situation and theirs. A simple online search will reveal whether the cast of Sesame Street, The Berenstain Bears, or Mister Rogers’ Neighborhood have ever had to move. (They have!)
  • Introduce moving-specific storylines. There are dozens of book and movies out there written specifically to help children cope with relocating. Check them out from the library or order them online, and then just read, watch, and repeat.

In addition to talking to your child, you should also take the time to listen and observe. Most importantly, ask your child how he or she is feeling about the move. Even if your little one can’t put into words what they are feeling, chances are you know them well enough to discern what parts of the moving process are making them most anxious. Also, be on the lookout for new behaviors and different emotional responses at home or school. Every tantrum, outburst, or breakdown is another opportunity to reassure your child that everything will be OK.

Take Action

In addition to telling and showing your child how a move will affect them, there are some more steps you can take to ease them through the transition. Keep in mind that every child is different, and what calms one little person may trigger another. Use your best judgment and parental instincts to determine which of these ideas may benefit your kid, and don’t be afraid to change tactics mid-stride if your strategy doesn’t seem to be working.

During the move, pack your child’s belongings last, and unpack them first. Allow your child to help as much or as little as they feel comfortable. If they are anxious about all of their belongings making it to the new house, ask them to make a checklist of beloved items. Then, let them help you pack and label them. Consider investing in clear, plastic tubs instead of plain cardboard boxes. This way, your child can keep an eye on their stuff. You may even be able to transport a container of their special items in the car with you.

Your list of action items should also include creating a space in the new home where your child feels safe and comfortable. For some children, this may mean organizing and decorating their new room to mimic their old one. While the layout and size of the room will likely vary, taking care to position furniture, wall hangings, and toys in the same relative positions can help your little one regain a sense of familiarity in your new home. Other children may see a new room as a chance to choose new decor. Allowing them to choose a paint color or a new bedding set may be just the thing your child needs to get excited about his new space.

If your new home comes with a backyard, you may also want to invest some time and energy into creating an outdoor space specifically for your child with ASD before you move in or shortly after. Focus on activities that develop skills and stimulate their senses, like a sandbox, water table, or birdseed bin. It would help if you also designed an area of the space as a haven — somewhere your child can go when he or she is feeling overstimulated.

Ultimately, finding a new normal is going to take time. Even after everything is moved and unpacked, leave space for your child to change his or her mind. While you may not be able to repaint their room, you can rearrange it or replace their new comforter with their old, familiar one.

Consistency is Key

The more prepared your child is for each part of the journey, the more likely their acceptance of it. As you probably already know, that means repeating the narrative you’ve created over and over and over again. During a move, that’s going to be more difficult than usual. You’ll be busy packing, loading, unloading, and unpacking, not to mention completing all of the administrative tasks that come with moving. (Think address changes, projects around the house, and other odds and ends.) Just remember, the time and energy you spend helping your child understand the process will come back to you in the end in a great way. So, start early, repeat often, and — perhaps most importantly — don’t stop reassuring your child until they have adjusted to all of the changes in their lives. It’s gonna take some time for you as well, and that’s ok. Not every move for me has been a positive one, but I kept reassuring myself that no matter how difficult the process was, there was space to make a home at the end. And this home was going to be filled with love, and patience, and understanding. The new home would be a witness to the amazing achievements my son was going to make, and the strength that I would build. It’s all good! Take a deep breath, and take one box at a time.

Thanks for being a part of My Autism Tribe, and I’ll see ya next week!

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EPISODE 30: MANNERS WITH A SIDE OF AUTISM

With guest Robin Hammond of Southern Hospitality Etiquette

 

INTRO:

In the 1950s, manners were taught to all children. Because of the structured ways that manners were taught and the expectation that everyone would learn them, it helped many children who were socially awkward to adapt. I want to read you a quote from our beloved Temple Grandin: “It is acceptable to be eccentric, but being rude, unkind, or not knowing how to interact with others at the basic level of “please,” “thank you,” or “excuse me” is never acceptable. Manners help people exist together and get along with each other. They will open doors that will give you a chance to express yourself, be yourself, and achieve your goals and dreams. I know from experience that this is possible. Just keep learning and trying!”

 

Today’s guest is Robin Hammond, the owner of Southern Hospitality in Kentucky.  She specializes in teaching children and adults, through etiquette classes, how to become confident, self-assured, and influential leaders in the community. Robin also became an official Autism-Friendly Certified Business. Please join me in a warm welcome.

 

CONCLUSION:

In many of her writings and face-to-face presentations, Temple Grandin repeatedly stresses one thing: autism is not an excuse for bad behavior. In a great book with a forward by Temple, they give tips for teaching manners to children with autism. The top ones are: 1. Model the good manners you are trying to teach your child. 2. Use video modeling and media as tools. Even animated characters can have good manners. 3. Define the manner in a way that is meaningful for the child. Explain to them that they are rules. Some kids don’t care or understand the “why it’s important to others”. And 4. Consider using visuals and nonverbal prompts so the child can learn to use manners independently.

All in all, no matter where we call home, the basic social manners of “please,” “thank you,” or excuse me” are a universal language. As Temple says, “Just keep learning and trying.” Thanks so much for being a part of My Autism Tribe, and I’ll see you next week!

 

ABOUT SOUTHERN HOSPITALITY ETIQUETTE:

There are a few things southerners take seriously: college football, anything fried, and manners. As southern children, we are taught early on the value of writing thank-you notes, saying “please” and “thank you”, and understanding the important of proper etiquette in every situation.

www.southernhospitalityinky.com

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EPISODE 29: Friendly Robot Helps Children with Autism

With Dr. Greg Firn, COO, RoboKind

 

INTRO:

Many children and adults on the autism spectrum need help in learning how to act in different types of social situations. They often have the desire to interact with others, but may not know how to engage friends or may be overwhelmed by the idea of new experiences.

 

Today’s guest is Dr. Greg Firn, the Chief Operating Officer for RoboKind. The focus at RoboKind has been to help children with autism learn critical social and behavioral skills and achieve academic success by way of purpose-built humanoid robots that deliver developmental instruction modules that teach critical functional skills. This comprehensive intervention program is called Robots4Autism. Greg’s deep experience and passion for helping under-served children has been instrumental in helping RoboKind develop the products and strategies that will successfully serve the K-12 education market.

 

CONCLUSION:

All students, regardless of their background or ability, should be given the opportunity to realize their full potential. The future is interactive education, and thanks to our friends at RoboKind, we are on our way to engaging, enhancing, and enriching students with diverse and inclusive education. Thanks so much for being a part of My Autism Tribe. Keep up the great work, and I’ll see you next week!

 

ABOUT:

Robots4Autism is a comprehensive intervention program that uses purpose-built humanoid robots to deliver developmental instruction modules that teach critical functional skills.

  • The curriculum uses proven best practices for teaching social and behavioral skills.
  • The robot, Milo, creates a high-level of engagement between the student and the robot.
  • Unlimited repetition of lessons that are 100% consistent.
  • Data provided to document and direct student progress.

 

Positive Student Outcomes – Learners with ASD using the Robots4Autism curriculum show observable increases in engagement: eye contact, body language and friendliness. Working with Milo, learners act more appropriately in social situations, self-motivate, self-regulate, and generalize in the population.

 

Benefits

  1. Behavior – Rapid decreases in disruptions and meltdowns; increases in ability to concentrate. Due to Calm Down modules and acceptance of Milo as a friend.
  2. Emotional Understanding – Increased understanding of human emotions and their meanings creates a willingness to look at humans directly in their face. Creates confidence and willingness to engage in social situations.
  3. Vocabulary – Dramatic increases in verbalization and attempts to use language and expand vocabulary.
  4. Home – Changes in behavior and interaction at home and a recognition by parents that things have improved.
  5. School – Ability to function in school translates into rapid academic progress. These life-changing benefits often occur after only 1-4 months of interaction with Milo. 

 

FOR MORE INFORMATION:

www.robokind.com

 

PRESS MENTIONS:

https://www.wwltv.com/article/news/education/milo-robot-is-changing-the-way-students-with-autism-learn/289-549737eb-aac2-4d55-ad7f-ebab34d53089

 

https://thejournal.com/articles/2019/04/04/friendly-robot-helps-autistic-kids-practice-social-skills.aspx

 

 

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