Kids & Family

A community of advocates linked by autism and bound by strength.

Episodes

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/

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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.

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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

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

 

INTRODUCTION:

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

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

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

 

SEGMENT:

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

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

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

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

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

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

-School avoidance and higher rates of absenteeism

-Decrease in grades

- Inability to concentrate

- Loss of interest in academic achievement and an

- Increase in dropout rates

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

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

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

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

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

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

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

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