Kids & Family

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

Episodes

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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