Educating, Supporting and Empowering the Autism Community.
Episodes
Monday Sep 23, 2019
Monday Sep 23, 2019
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
Monday Sep 16, 2019
Monday Sep 16, 2019
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.
Monday Sep 09, 2019
Monday Sep 09, 2019
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:
Monday Sep 02, 2019
Monday Sep 02, 2019
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
Monday Aug 26, 2019
Monday Aug 26, 2019
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:
- 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.
- 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.
- 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.
- Use simple language that is easy for your little one to understand and repeat.
- 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!
Monday Aug 19, 2019
Monday Aug 19, 2019
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.
Monday Aug 12, 2019
Monday Aug 12, 2019
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 –
- Behavior – Rapid decreases in disruptions and meltdowns; increases in ability to concentrate. Due to Calm Down modules and acceptance of Milo as a friend.
- 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.
- Vocabulary – Dramatic increases in verbalization and attempts to use language and expand vocabulary.
- Home – Changes in behavior and interaction at home and a recognition by parents that things have improved.
- 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:
PRESS MENTIONS:
Tuesday Aug 06, 2019
Tuesday Aug 06, 2019
EPISODE 28: AUTISM STORIES OF PROGRESSION
Featuring Joyce Peet, OT
INTRODUCTION:
Sometimes it’s easy to get mentally stuck in a place of despair when caring for a loved one on the autism spectrum. All of the therapy appointments, advocating and temporary setbacks can be overwhelming and discouraging. I always think it’s important, however, to focus on the stories of success. The stories that give hope and encouragement. Everyone needs this, right?
Today’s guest has many years of experience in providing care for those on the spectrum, and she has many stories that I believe will inspire us all to keep going. Joyce Peet is an occupational therapist, and she has been providing therapy for my son for the past two years. I’ve seen the progress that my son has made, and I’ve often relied on her to provide me direction on the best ways to set goals for social interaction, behavior and classroom performance for Alex. Let’s all give a warm welcome.
CONCLUSION:
Occupational therapists are experts in the social, emotional, and physiological effects of illness. This knowledge helps them promote skills for independent living in people with autism and other developmental disorders. They are often a very critical piece in a developmental therapy program. But aside from all of the text book knowledge and individualized therapy plans, they are a witness to the incredible lives of those on the spectrum. From beginning to end, they see it all, and are inspired to make a difference in the lives of others. Thanks so much for being a part of My Autism Tribe, and I’ll see you next week!
Tuesday Jul 30, 2019
Tuesday Jul 30, 2019
EPISODE 27: LIVING A HAPPY AND MEANINGFUL LIFE WITH AUTISM
With Dawnita Shively
INTRODUCTION:
Sometimes it’s easy to just focus on the word “autism”, but let’s have our conversation today focus on passions and uniqueness. Let’s talk about setting goals for the individual and the expectation of your child having a happy, fulfilling and meaningful life.
Today’s guest is Dawnita Shively, a passionate BCBA and Clinical Director for Autism and Behavior Concepts– an organization that provides clinic and home-based services to children and adults with autism. She has a vast amount of knowledge and experience from her years in working closely with autism families.
Early detection & Intervention:
- This is your child. If you feel that your child is not hitting milestones be persistent. Find someone who will take your concerns seriously and evaluate.
- Allow yourself to grieve and start setting goals and expectations.
- Do not let a diagnosis tell you who your child will become.
- Like all of us, they will have their own goals and passions. Learn to accept those passions and help them by allowing access to interventions that teach lifelong skills.
- Research the treatment options and decide what is best for your child.
School age:
- Culturally children are expected to go to school. That is what parents strive for and if this is right for your child, push for it.
- Remember that public education requires that children receive “free and appropriate” not “free and exactly what you want.”
- Ask yourself what behavior impedes on my child succeeding in school.
- Consult professionals to help you set reasonable goals and push.
- Find a placement that understands that your child is an individual and use your child’s passions to help them succeed in life.
- Know your rights and let the school know you are aware of what your child deserves and do not give up.
Adolescents:
- Teenage years are difficult on all of us. Remember this is not unique to autism, try to relate, do not make excuses, and continue to set goals.
- This is the time to start asking, observing and getting to know what motivates your child.
- How can you help them grow in areas they enjoy so that they can have a happy and productive life?
- Hobbies
- Job Skills
- Independence: We are happy when we can do things for ourselves.
- Start thinking and talking about what lifestyle your child will have as an adult.
- Reasses goals and barriers to that lifestyle.
Adulthood:
- Remember to ask yourself what makes a productive and happy adult. Focus on these areas as goals.
- Do not focus on Autism, focus on the happy and productive life.
- Who in your life can help you support your child?
- Reality is you will not be around forever.
- You want your child to have a community, just like you have, to support them in their passion and goals.
- Remember that all adults make choices that lead to success and happiness. Working with your adult child and knowing their goals will help you.
- College
- Job placement
- Living with you
CONCLUSION:
Always remember that a parent is a child’s best advocate. Parents are ultimately responsible for making sure their child can have a happy and healthy life. By having these expectations, they can set goals to remove barriers that may prevent this from happening. If you are a parent or caregiver to a loved one on the autism spectrum, set goals for a life that is meaningful to your child and society, and know that autism does not define your child. Let your child define themselves, and support them in having the best life they can possibly have. Thanks for joining me today, and for being a part of My Autism Tribe. I’ll see you next week!
Monday Jul 22, 2019
Monday Jul 22, 2019
EPISODE 26: AUTISM FAMILIES: HOW TO THRIVE IN CHAOS
INTRODUCTION:
How often do you find yourself saying, “My life is just chaotic. Will this ever end?” Today’s guest is a father and autism advocate that has worked tirelessly at not only creating a thriving home environment for his family, but many other families as well.
Kyle Jetsel, and his wife Shelly, are the proud parents of six children, two of them being on the autism spectrum. He’s going to be sharing his story on how his family is actually thriving amidst the chaos. They are coaches, confidants, and they truly understand what it’s like to be on the autism roller coaster. Over the past decade, they’ve developed strategies and techniques that have helped their family lower stress, and have been able to get back the family life they wanted. A life filled with joy, happiness and fun. It hasn’t been easy, but they weren’t afraid to work at it. Please welcome this inspiring guest, Kyle Jetsel.
CONCLUSION:
Raising children on the autism spectrum can be really hard. The chaos can sometimes feel overwhelming. Perhaps there are times you feel that your home is like a combat zone. But it doesn’t have to be that way. Now is the time to really roll up your sleeves, dig deep, and help your family get a whole new, better life that everyone deserves. We are here for you, for support, love and encouragement. Thanks for being a part of My Autism Tribe, and thanks for listening to the inspirational message of Kyle Jetsel. I’ll see you next week!
TO FOLLOW KYLE JETSEL:
WEBSITE:
FACEBOOK:
https://www.facebook.com/AutismLaughterTherapy/
YOUTUBE:
Tuesday Jul 16, 2019
Tuesday Jul 16, 2019
EPISODE 25: Autism - A Mother and BCBA’s Story
INTRODUCTION:
As you know, we’re always searching for wonderful stories and great information to share. On today’s episode, we’re speaking with BCBA and Founder of Proof Positive ABA Therapies, Heather Grimaldi. As a Board Certified Behavior Analyst and Clinical Director, Heather’s focus has always been on supporting the families and team members tasked with implementing behavior-analytic interventions. She built Proof Positive ABA Therapies to teach self-help and social skills with a family-focused approach and an emphasis on parent education. In 2016, Autism Learning Partners created one of the largest autism therapy platforms by acquiring Proof Positive (Heather has a funny story about this), and today she continues her work with families as a Clinical Liaison with Autism Learning Partners in Orange County, California. Please join me in a warm welcome.
CONCLUSION:
Our goal is to always share a diverse range of voices within the autism community; people both on and off the spectrum, from all walks of life, with all different backgrounds. We feel it’s important because we’re all in it together! We can all learn from each other, and we can all support each other. On good days and bad days. Thanks for joining me today and for being a part of My Autism Tribe. I’ll see you next week!
ABOUT SIMPLE SPECTRUM SUPPLEMENT:
https://simplespectrumsupplement.com/
The supplement is designed to provide the nutritional needs of the developing nervous system, with extra support for individuals with autism, by addressing potential dietary deficits. Working with Defeat Autism Now and Medical Association of Pediatric Special Needs affiliated doctors in her role as a BCBA, company founder Heather Grimaldi saw benefits of high-end supplement systems firsthand. Simple Spectrum is similar to a nutraceutical a doctor might prescribe, but at a much more affordable price, without the long drives and even longer waits. There are states and countries that don’t even have access to these types of doctors.
The Simple Spectrum mission was to create the kind of nutraceutical supplement based on the latest scientific research, and free from the extraneous additives packed into so many similar products on the market. As a parent of one child with sensory processing disorders and another with ketotic hypoglycemia, responsible for implementing food programs herself, Heather knows how hard it can be to get kids to eat the right foods and that includes her own kids. Simple Spectrum Supplement is an unflavored dissolvable powder without gluten, casein, added sugar, soy, binding agents, artificial colors, preservatives, GMOs and dairy. The highest quality vitamins, minerals, and other nutrients – Simple Spectrum Supplement really is quite simple.
Monday Jul 08, 2019
Monday Jul 08, 2019
Today’s episode will be a solo episode, so no guest. I wanted to take the time to touch on a subject that sparks a lot of frustration in the autism community. What does autism look like? I often am told that my son doesn’t “look autistic”. Even though I know that most people are not intending to be insensitive, it still bothers me. Yes, my son is the most beautiful thing that I’ve ever laid eyes on, but his beauty is more than skin deep. Autism does not define him, and I have never let his autism diagnosis precede him. So how do you respond when someone says something like “your child doesn’t look autistic”?
I use this question as an educational platform; an opportunity to present information in a conversation. I usually say, “If you want to know what an autistic child looks like, look at your own child or grandchild. Look at the children who live next door to you and take a glimpse at every child you walk past on the street. These could very well be the faces of autism. There is no visible indication that a child is affected by this neurological disorder.”
Autism is the king of all tricksters. I know this to be true because there have been times when I took my son to the store or doctor’s office and received looks of confusion or frustration in response to his sometimes-odd behaviors. Unless I inform someone, no one has a clue that he is autistic.
From time to time, I find myself getting upset about the glares from individuals who would never think autism is the culprit for these odd behaviors. There have even been occasions when I’ve had to get a little confrontational with those brave souls who dared to make a rude comment or stare for just a little longer than necessary. But, after all of the annoyance and rude exchanges, autism still lingers. It seems to me the only thing left to do is educate rather than disassociate. I believe this is where acceptance and inclusion come into play.
So, what exactly is autism? A lot of people I’ve crossed paths with have no clue as to what this disorder is and are even quick to misconstrue the meaning of autistic with artistic.
Autism doesn’t have anything to do with the arts; our children are extremely talented, but artistic and autistic are two different things.
Autism is an illness that affects social and communication skills. Some Autistic children have a hard time playing with others and making friends and some are nonverbal. Many autistic children display behaviors that may include: repetitively pouring liquids from cup to cup, spinning around and not getting dizzy, not wanting to be touched or hugged, lining up toys and screaming for hours. Of course, every Autistic child is different. There are varying levels of this disorder and that’s why it is called a spectrum.
Some individuals on the low end of the spectrum are nonverbal and are only able to show what they want by taking others to it or bringing someone a picture. The fact that they can’t communicate is the reason for most of their severe meltdowns.
Imagine for a moment being frustrated, but not being able to express why. Imagine you have a toothache, but you’re not able tell anyone. Think how you would feel if you really wanted affection, but a simple stroke of your skin caused physical pain.
These are just a few of the things autism individuals must face and because of this, I have made a promise to my son and others on the autism spectrum to put up a good fight. To be their voice if they don’t yet have one. To be not only their advocate, but a part of every family’s support system.
Right now, no one expert has been able to confirm what causes autism, but one thing is certain: bad parenting IS NOT the cause of this impairment. Unfortunately, we still have some who are ready and willing to wave the idea around that a parent can inflict autism onto their child. There are a few people I know who are still quick to say that there is nothing wrong with autism individuals, but they only need to be disciplined. Although such an accusation hurts deeply, I now understand that it doesn’t matter who the person is or how well educated they may think they are on the subject of autism; no one can truly comprehend what it’s like to raise an autistic child unless they are raising one themselves.
When my son was diagnosed three years ago, I was hesitant to speak of his diagnosis. It wasn’t that I was embarrassed, but on the few occasions when I did reveal his autism diagnosis, I was inundated with sometimes hurtful questions like, “Oh, how many toothpicks can he count at one time, what musical instrument does he play, oh he’s like Einstein”. Too many questions, and not enough answers. Then I realized, by keeping silent on my son’s diagnosis, I was disassociating from our community. Think about it. Progress has never been made in history, without those voices that sparked tidal waves. That moved mountains. Autism is a part of my family’s life and it forever will be. A long time ago I accepted that my family doesn’t fit into an ordinary mold; we do what we can to get over every challenge that autism presents to us, and we find beauty amidst the chaos.
I laughed in the face of autism when my son started reading at an early age, when he was able to get a haircut without screaming, to play in the sand without hesitation. We have shown and proved that autism will not come in between our dreams of normalcy and happiness.
Still, there will forever be a battle to win with those who feel a disability is only a disability when it screams out at you from a wheelchair. There will always be one individual who thinks a good whipping is the only cure needed for an autistic child.
Sadly, for the millions of parents who know better, we can only continue to do what we do best: love and support our children. Nobody else will do it better. We are the keepers of disappointment when we find that medical insurance does not cover expensive and much needed therapy. We are the proactive and often angry parents questioning why sensory integration and assistive technology aren’t incorporated into our children’s individual education plan or (IEPs).
And some of those children are the ones you see in the grocery store shrieking at the top of their lungs or darting off nonstop at a moment’s notice. So please, don’t be quick to judge the parents. Looks are very deceiving. Take into account that it may not just be bad behavior; it may be autism.
In every situation, we must remind others there are behavioral strengths of children with autism, and those strengths can be expanded. Just like neurotypical individuals, those with autism have a wide range of talents. A child with autism may be able to play a song on the piano without sheet music, but will avoid interaction with peers. At school, perhaps the child’s piano-playing skills may be incorporated in the classroom to help increase communication with peers. For example, a teacher could make a game of “name that tune”, encourage turn-taking at the piano, have the child teach peers about the piano. Teachers could also make use of the vast knowledge a student with autism may have on a particular topic. For example, if a student is fixated on train routes, a teacher could have that student develop a presentation with peers regarding specific routes, draw a wall-size map of routes, and incorporate in lesson plans regarding transportation, communities or history. Any of these activities could be beneficial not only to the student with autism, but his or her peers as well.
Autism is what makes it difficult sometimes for my son to communicate with others, but this doesn’t mean that I can’t work with others to teach them how to communicate with him. Autism makes him sometimes unaware of social norms, and how to form relationships with peers. Autism is trading in soccer practice or piano lessons for speech therapy, occupational therapy, and ABA therapy. But autism also looks like the pure joy on his face when he is swimming, or snuggling with me. The confident smile he gets when he is brave enough to try something new. Autism in our family teaches us to celebrate and appreciate every single thing.
Autism is a diagnosis, and nothing more. As you may have heard, “It doesn’t come with a manual, but parents that never give up.” Just like I am instilling bravery and strength in my son, he is teaching me to be brave, strong, and courageous, too. He has taught me that even when I’m tired and feel like giving up, I can keep going. My son has taught me that there are many other ways of communication than simply just speaking. I knew my life had purpose before my son, but now I truly know what I’ve been put here to do. I am an autism parent, and I will never, ever give up, no matter what it takes.
Thanks so much for being a part of My Autism Tribe. For staying strong, and brave for your loved ones and your community, and for helping me teach others about the beautiful differences of autism. The next time someone asks you what autism looks like, I encourage you to take the opportunity to educate. Together, we are one voice made stronger. Keep up the great work, and I’ll see you next week!
Monday Jul 01, 2019
Monday Jul 01, 2019
EPISODE 23: TEENAGING WITH AUTISM
“A Personal Look into Their World”
INTRODUCTION:
Autism is a an extremely complicated diagnosis, and when you add teenage hormones to the mix you sometimes get a new set of behaviors and possibly some challenges.
My son is 5 now, but I know he will be a teenager in a blink of an eye. I thought it was important to share with you a look into the world of a teenager on the spectrum. Words cannot even begin to describe just how proud I am to introduce today’s guest. Her name is Kennedy, and she’s my niece. I’ve watched Kennedy grow into such a beautiful and lovely lady. This girl has SO many strengths (many of which she may not even claim to have or may not even be aware of), but I’ve also seen the struggles; the complications that she experiences. So, I thought I would have a personal conversation with her, so I could better understand her views, her opinions…a look into her world. Please join me in a warm welcome to one of the pieces of my heart. My niece.
CONCLUSION:
I speak with A LOT of parents whose children are entering into the teenage world, or have been in this world for a while. Here are some tips they have given me:
- Don’t ask too many questions. I believe all teenagers in general would agree with this one, but for those on the spectrum, they usually hate being “quizzed”. This can make it difficult as a parent because we really want to be involved in our children’s lives. Well, sometimes they may feel like they’re being interrogated. Perhaps instead of asking “How was school?” or “What did you do today?”, ask them about their interests. Is there a subject they are studying in school that they are REALLY into? You might be surprised at how long they’ll want to talk about it.
- Bring solid evidence to the table. Sometimes they have a hard time recognizing social rules, so maybe avoid saying things like “Because I said so” or “Because I’m your Mom or Dad”. Instead use facts, rules (or even LAWS) to back up why.
- Don’t scold their behavior before understanding what it truly is. When a teenager with autism doesn’t respond to your questions, or walks away without saying a word, don’t assume they are being rude. Sometimes the social interaction is difficult, and maybe even painful for them. You don’t know what they experienced that day. They are self-regulating in a world every single day that can be loud, overwhelming, and the last thing they’re thinking about is whether or not it’s bothering you.
- Text messaging might provide better communication. Most of us live on our phones, which is a good and bad thing, but think about it…sometimes it may be more relaxing for us, or more comfortable for us, than actually speaking on the phone. We’re able to collect our thoughts before responding, giving us more time to respond in a more appropriate way, perhaps. For people on the spectrum, this can be a huge plus.
- Be patient. Yes, there might be things that they say and do that you find strange or different, but just know they are living in an overwhelming and complicated world and are just learning how to navigate it all.
- Just be accepting, autism and everything. We were all teenagers at one point in time, and we were all struggling to find our identity, deal with our emotions, trying to figure out our place in this crazy world. Try entering their world instead of trying to force them into yours. You may be surprised at just how much beauty there is amidst the chaos.
Thank you so much for joining my niece and me today, and thank you for being a part of My Autism Tribe. Keep up the great work, and I’ll see you next week!
Monday Jun 24, 2019
Monday Jun 24, 2019
EPISODE 22: THE REAL, THE RAW, AND THE UNCOMFORTABLE
“Autism and Single Parenting”
Hi, everyone! This is Susan Scott, the founder and executive director of the nonprofit My Autism Tribe, and host of the My Autism Tribe podcast. This is the first podcast where I am flying completely solo, and I must admit…I’m a little nervous (laugh). I’m nervous for several reasons: 1. I’m doing this all alone, so I have no one else to help me carry today’s topic, 2. I want to make sure that I represent this topic fairly and truthfully, and 3. This topic places me in a really vulnerable position. It’s real, still very raw, and most definitely uncomfortable. BUT this is where we find growth, right? I mean, my son is placed is uncomfortable situations every day, so why shouldn’t I place myself in uncomfortable situations?
Today’s topic is single parenting with children or loved ones on the autism spectrum. I know this topic doesn’t intimately touch everyone, but perhaps you know someone that is on this journey, and perhaps you still (even though not divorced) will relate to many of the points that I discuss today. I get asked (A LOT ACTUALLY) if I believe autism, in some way, lead to my divorce. I’ll go ahead and answer this question now, so we can move on. No. No, it didn’t. Not at all. Did it add stress to our relationship? Sure, but all marriage has stress. It’s how you choose to deal or not deal with it. I’m not going into details that lead to my divorce, out of respect for my ex-husband, but if I had to summarize our extremely long story into a very small nutshell, I would just say that we had different priorities…and I’ll leave it that.
When my marriage ended, I felt so many different emotions. I had guilt, anger, depression, and (just being honest here) relief. I felt every single one in a very deep and powerful way, but it was important that I felt all of these emotions because that was part of my healing process. I was grieving a relationship death, and entering into a world of unknowns as a mother with sole custody of a child with special needs. I honestly didn’t know if I could do it, but here I am. Still breathing, still loving, still caring, and dare I say, even enjoying life again. I’ve learned to trust myself, embrace new possibilities (just like this!), and I’ve put one foot in front of the other. I’ve surrounded myself with friends and family who not only support my decision, but have grown to understand the many reasons that I did what I did.
Divorce is such a difficult decision to make, because it affects so many people. It not only affected my son, my ex-husband, and myself because we had to redefine what our version of “family” was, is, and will be in the future, but it affected our extended family and friends.
I soon realized that single parenting a child, especially one with special needs, can be isolating at times, but it is doable. It also feels like piloting a single-engine plane in a storm, but you always come out the other side. Single parenting is super tough – I’m not going to sugarcoat it. I’ve been fortunate enough, through this platform and through other intimate conversations that I’ve had with other parents on the same journey, to hear their fears, frustrations, and I thought I might share some of these with you as well. Granted, single parents with children on the spectrum do not experience these fears or frustrations every single day, but I found that AT LEAST one time or another, I drew a line to every one…and I know that parents and caregivers who are not divorced have experienced many of these as well. Let’s get started.
Exhaustion: Where do I even start with this? Maybe with the word coffee? When you’re a single parent, you’re doing (most likely) everything by yourself. You’re maintaining a job, coordinating therapies, fixing breakfast, lunch and dinners by yourself, supervising everyone in your child’s life, educating others, advocating for your child. This list goes on and on and on. I’ve reached places of loneliness that I didn’t know existed…foreign lands that I had only read about in books. That’s one of the reasons that I formed My Autism Tribe. You guys just get it. Divorced or not.
Another one is financial stress. This one is a doozy. Not only are you putting food on the table, clothes on everyone’s body, paying the mortgage or rent, putting gas in the car, but also paying for therapies, insurance, child care (in the case that the stars align and you are actually able to go out and do something for yourself), assistive technologies if your child needs them, extracurricular activities, books, etc. It’s a lot, but one thing I learned very early on, and this was before marriage, before a child, was to create a budget. I make a list of all our needs, sprinkled in with some wants, and I balance the numbers. Sometimes, a lot of times, it’s in the red…and that is terrifying. Last September, the company I was working for as Vice President of Client Services, decided they were closing their doors. I’ve never let fear rule my life, I’m a risk taker by nature, but I don’t think that I’ve ever been more scared or uncertain about anything before. I couldn’t find work…literally applied to thousands of positions and was either told I was over-qualified or the position had already been filled. (This is the part that is really, really uncomfortable). I was not only feeling like a failure as a professional, but I felt like I was failing as a parent…not doing enough or everything that I should be doing to provide for my son. We were living on my savings, and thank God we had them. I’ve been doing some consulting work, but we’re not back to where we were. And I’m trying to find peace with that. The school that my son attends found a grant that helped us pay for some of his speech therapies until I could get back on my feet, and that helped a ton. Every little bit helped. Several family members also pitched in to help pay for a few things. Anyone that knows me, knows how much I hate this…I hate asking for help, taking when I can’t give, but I was literally left with no choice. I was humbled, and maybe that’s exactly where I needed to be.
This next one is super frustrating, but I’m learning to understand a bit more. It’s when people tell me to “take care of myself” that “self-care is important”, but I often have no one else to take my place so I can. And then, when I finally do (rarely) have time for that quote/unquote “self-care”, I’m feeling guilty because I should be with my son, because I know him inside and out, because I can understand him when he is having trouble expressing his wants or his frustrations. I, by nature, am (what people like to call) a “mover-and-a-shaker”. I am never quite “still”, always going, always thinking, so the notion of actually relaxing can be somewhat foreign to me (laugh). I’m trying to learn more, understand, and wrap my mind around this self-care thing. Right now, most of the time, my self-care is indulging myself in Netflix and eating popcorn in bed after my son is asleep. Exciting, I know. Don’t be jealous. I’m not the best at prioritizing, I admit, because everything in my mind is the most important all of the time. BUT, I’m going to try my best to becoming better at this, and I want you guys to hold me accountable. Perhaps send me some suggestions on this. How do you DO “self-care”?
So, there are other frustrations and challenges that certainly pop up in this single parenting thing, but these are the big whammies for me. On the flip side of frustrations, there have also been many things I am grateful to have learned and experienced.
I have strength and courage I didn’t know I had. Shew! The Susan 20 years ago would NEVER have thought in a million years that she could pull this off. Sure, I knew I had strength, but this whole journey has allowed me to see pieces of myself that really…I’m quite proud of.
I’m also learning to be mindful and to celebrate little successes, and this has in turn increased my patience. I used to be one of the most impatient people, but since there have been days of very literally putting one foot in front of the other, it has allowed me to be more in the moment…exactly where my son wants and needs me to be.
I’ve also gotten to know some AMAZING people, like yourselves! The conversations, the interactions, the experiences that I’ve had with other advocates, other parents and caregivers, who not only have such compassion, but also a sense of humor. This, to me, has been a miracle. I may not have emphasized enough, or even mentioned at all, but the strength that I’ve gained through the circle of friends that I’ve met along the way – you have been my life jacket, keeping me afloat on days that I thought I would most definitely drown. So thank you.
And now, maybe I can share a few tips with you that have helped me. Some of these I’m better with than others, and I truly feel like these most of these tips can work for not only single parents, but all parents or caregivers, in general.
- Don’t sweat the small stuff, because so much of everything going on is “small stuff”.
- Don’t speak poorly of your ex, because your children can hear everything and they understand more than we sometimes give them credit for.
- Our children can feed off our emotions, whether or not they can let us know it or not. My son can feel my tension at times, and those are the times that I feel like his stimming increases.
- Don’t be afraid to seek counseling.
- This may be silly, but just know that it’s ok to buy disposable plates or cups so you don’t have to do dishes. This can be time saved for doing other more important things.
- Sleep when you can, where you can. I remember several times, taking my lunch break in my car in a parking lot where I was able to catch a tiny nap. It helped! I didn’t care what other people thought. Although, one time a very nice gentleman tapped on my window to see if I was alive. (laugh) Bless his heart.
- Find a support group or another parent of a child with autism. They will keep you sane.
- Get help in navigating health insurance. It’s ok to not know everything. Insurance is a BEAST, and knowledge is power.
- This next one may sound kind of harsh, but it has helped me on my journey. Get rid of anyone in your life who causes you additional stress. Real friends are the ones who “get it” without needing an explanation. Family is a little trickier to navigate, but don’t be afraid to let them know that you are setting boundaries, and will not participate in any negative conversations about your child. That’s ok to do.
- And lastly, start by realizing that autism is something that is forever. I don’t discourage early intervention (I actually highly encourage it), but you have to pace yourself, while still allowing your child to be a child.
I hope this helps at least one person out there, and I sure hope that I didn’t say anything that offended anyone in any way. It certainly wasn’t my intention. I always want to make sure that I am not only sharing your stories, but also letting you hear my story as well. Sometimes it has a good ending, and sometimes it has a not-so-good ending – but regardless, I feel like it’s a story still worth sharing.
Thank you for supporting My Autism Tribe, and thank you for allowing us to support you. You never know just how important support is, until it’s the only thing that you feel like you have. For you, I am grateful.
Keep up the great work, and I’ll see you next week!
Monday Jun 17, 2019
Monday Jun 17, 2019
EPISODE 21: AUTISM & FITNESS
“Tailoring Exercise Programs to Match Needs”
INTRO:
It’s widely known that physical fitness and exercise lead to better physical health, but it’s less widely known that there are both mental and behavioral benefits as well. Experts have proven that consistent exercise improves concentration, attention, organizational skills, which leads to a reduction in problem behaviors.
Today’s episode features Mark Fleming, founder of Puzzle Piece Fitness. He was diagnosed at the age of 3 with PDD-NOS, then formally diagnosed with autism at the age of 11. His “special interest” growing up was sports. He constantly heard how he was able to read the box scores in the paper before he could even read. He also had fine motor skill deficits that prevented him from playing the sports he loved so much, but he had something greater - parents that not only allowed him to play, but pushed him to play. After graduating with his Bachelors and Masters from the University of Alabama, he set a goal of using functional training with individuals in the autism community. He not only incorporates strength and cardiovascular training, but also incorporates exercises that help with motor planning and social skills. He wants to be a person that these individuals can turn to, so they can see they are not alone or helpless in this weird world we live in.
ABOUT PUZZLE PIECE FITNESS:
Mark founded Puzzle Piece Fitness, LLC as a means to improve the quality and quantity of the lives of individuals on the Autism Spectrum and Related Disabilities. Growing up his "special interest" was sports. He constantly heard how he was able to read the box scores in the paper before I could even read. However, he also had numerous fine motor skill deficits that prevented him from playing the sports he loved so much, but thankfully had parents that not only allowed him to play but pushed him to play. He was never able to realize his dream of playing sports professionally, but was able to find a new love of fitness in college. After receiving the majority of his education towards a Masters degree in Exercise Science, he was given an opportunity to work as a behavior assistant with an applied behavior analysis company working with individuals with Autism. Through his encounters while working in this field plus the encounters he had through volunteering and coaching in Special Olympics he noticed two startling trends. The first is that outside of school physical education, many individuals with Autism have very few opportunities to stay active and healthy. The second is that physical and occupational therapies provide great opportunities for this population in terms of being physically active, however, the therapies usually only cover obvious deficits and services are stopped once those deficits are corrected or the individual ages out of the school system. He continued to see individuals with little opportunity to stay active and even fewer opportunities for them to receive proper instruction of correct movement and form. After realizing that he could help provide these opportunities, he reached out and learned from the few others in the country that have been exercise training these individuals for years. After learning as much as he could, he decided to start a business providing personal exercise sessions for this population.
Puzzle Piece Fitness LLC, is a personal training service. He does not consider this to be a typical Autism or Related Disabilities kind of therapy. Exercise is a therapy that everybody in life should participate in and is life long and thus there are no "graduation" achievement milestones. His goal is to use some functional training with these individuals that not only incorporates strength and cardiovascular training, but also incorporating some things within the exercise that can help motor planning, improvement of social skills, and possibly increase cognitive functioning. He wants to be a person that these individuals can turn to, so they can see they are not alone or helpless in this weird world we live in.
CONCLUSION:
Children on the autism spectrum are still children! They can play catch, swim, play, run, just like their neurotypical friends. Perhaps they need to be taught in an “adapted” way. Break down complex motor skills into small tasks and teach them step-by-step. Perhaps adjust the rules of a game as necessary if they are struggling to remember them.
It’s absolutely imperative that every individual, regardless of ability or age, have access to exercise programs that are tailored to their needs.
Thanks so much for joining me today and for being a part of My Autism Tribe. I’ll see you next week!
ASSOCIATED LINKS:
Puzzle Piece Fitness (website) - https://www.puzzlefit.com/
Puzzle Piece Fitness (Facebook) - https://www.facebook.com/puzzlepiecefitness
Puzzle Piece Fitness (Instagram) - https://www.instagram.com/puzzlepiecefitness/
Puzzle Piece Fitness (LinkedIn) - https://www.linkedin.com/in/mark-fleming-23a2115a/?trk=hp-identity-name
Tuesday Jun 11, 2019
Tuesday Jun 11, 2019
EPISODE 20:
If you mention autism to most people they will think about children, but it’s a lifelong diagnosis. Children with autism grow up to be adults with autism.
We are all aware of the challenges of raising a child with autism, but what we don’t always think about is what happens when our child reaches adulthood – the added challenges and concerns that come with it. From job opportunities to housing, there are so many aspects to think about.
Today’s guest is autism mom Malinda Dalton-Cook. Her beautiful daughter Paige is 17 years old, non-verbal with additional concerns of epilepsy and severe food allergies. She’s going to share the fears and questions that her family are discussing now.
CONCLUSION:
It isn’t clear yet whether people with autism age in the same way as people without autism. This diagnosis as a whole is considered to be relatively new. But one thing is certain – we all deserve to age as well as we can. It’s only by continuing to understand how people with autism change as they get older, that we can really start to put the right services in place to support them. My biggest fear for my son is – how well will he be provided for when I’m gone? He’s only five, it’s my goal to start early. Plan ahead. These kiddos don’t stay young forever.
Thanks for joining me today, and thank you for being a part of My Autism Tribe. See ya next week!
Tuesday Jun 04, 2019
Tuesday Jun 04, 2019
EPISODE 19
Three years ago, my son Alex was diagnosed with autism and our expected journey changed. I was intimidated, panicked, fearful, distressed. It was a dark and confusing time. Once I wrapped my head around the diagnosis, started digging for resources and support, and over time, I’ve found pieces of advice that might help you on your journey.
Today’s guest is Tani Stevenson. She’s an autism mom of four, with two of her precious kiddos on the spectrum. We’ll be talking about the journey after receiving an autism diagnosis. She’s such a delight, and I hope you find this episode inspiring, perhaps a bit funny, and educational.
ADVICE:
#1: Don’t jump to conclusion. There will be so many people telling you so many things – it can be intimidating. Chin up! Push forward!
#2: Things could be worse! Autism is not a tragedy. It will all be ok!
#3: They’re still your beautiful child – with or without a diagnosis.
#4: Do not blame yourself! There isn’t anything that you could have done to prevent your child’s autism. Yes, you may receive stares in public. There will be uneducated people who ask you rude questions. It gets easier with time, and advocacy does wonders for your community.
#5: Do not stay in a dark place. Everyone has bad days, but don’t stay there. Reach out for support. Get involved in your community. Find your tribe!
#6 Do not let the autism diagnosis rob your family. Make special time for everyone – including yourself.
#7 There will be debates on whether you should use the word “autistic” or “person with autism”, to disclose or not disclose your child’s diagnosis. You choose what you feel is right for your family. These debates only cause division in the autism community, and there are other ways to use your time and energy for effectively.
#8 Last but certainly not least, advocate. Make your voice stronger. I guarantee you their little eyes are watching, and their little ears are listening.
Monday May 20, 2019
Monday May 20, 2019
EPISODE 18:
Traveling with children of any age can be difficult at times, can we agree? Traveling with someone who has special needs can add additional challenges to the regular stresses of travel. So when you combine the two, traveling with a child who has special needs can seem like an impossible task. But, it isn’t impossible. It’s simply a new challenge where the rewards are worth well more than the effort.
Today we’re speaking with autism mom and special needs travel coach, Sarah Marshall. She helps those who dream about a perfect family vacation, but struggle with making that dream come true because of the stressful reality of their child’s unique situation. Sarah takes her first-hand experience and professional expertise to find families the unique supports and accommodations to make their vacations a time to heal from stress so they can focus on making lifetime memories.
CONCLUSION
For our loved ones on the autism spectrum, traveling with unfamiliar routines and encountering stressful situations can be really hard, but you can show them that traveling can be a great adventure. Some helpful tips to consider may be:
- Consider the “musts” when you travel. Is there a specific food, toy, or routine that your child MUST have.
- Use social stories before you travel to help them prepare. Even finding YouTube videos on where you’re going can help.
- Prepare activity kits
- Bring an emergency bag and medical information
- And slow down, incorporate “breaks” for the whole family when traveling. It will help them and you to enjoy the moment.
Thanks for listening and being a part of My Autism Tribe. I’ll see you next week!
Sarah Marshall info
https://www.facebook.com/travelablevacations/
Phone: 630-445-1144
Scheduler: calendly.com/travelablevacations
Email:info@travelablevacations.com
ANOTHER RESOURCE:
Tuesday May 14, 2019
Tuesday May 14, 2019
EPISODE 17:
With Autism & Disability Self-Advocate Ryan Litchfield: Educational, Personal, and Professional Experiences in Working with the Autism and Gerontological Communities
INTRO:
For people with autism, it can be tough to find regular, paid employment. Times are changing for the better, however, there is much work to be done for advancement.
Only until fairly recently have Transition-to-Adult Programs been established, and they are in infancy. Some adults with autism have no intellectual disability, but are coping with severe anxiety, and others may have amazing technical skills but experience sensory challenges.
Schools are mandated to provide appropriate transition programs for autistic students, but not all schools are ready or able to do so, and adults services vary by location.
On today’s episode, we’re speaking with Ryan Litchfield; an autism and disability self-advocate with educational, personal, and professional experiences in working with the autism and gerontological communities. He has over 7 years of public speaking on disability and health advocacy across many communities within central Massachusetts, and is passionate in helping individuals with autism to work on and pursue their personal and professional goals.
CONCLUSION:
One of the first big corporations to recruit individuals with autism was Microsoft which started its “Inclusive Hiring for People with Disabilities” program three years ago in the US. Each candidate hired by Microsoft has access to a third-party job coach who helps them transition into the workforce and answers any questions they may have. Their mission is to empower everyone in the organization, and to create a diverse workforce.
If you are an employer, here are some tips:
- Check whether your job description is relevant to the job
- For application forms, it’s not always obvious what information the applicant needs to provide on the application form. It’s important to provide clear guidance on this and to make sure the form includes a space for applicants to highlight any help or adjustments they want at an interview
- During the interview stage, make sure that the questions you ask are clear and unambiguous.
If you’d like additional information, please feel free to reach out to My Autism Tribe, and if you’d like to hear firsthand from someone’s experiences, reach out to Ryan at www.ryansvoice.blog .
Thanks so much for listening to My Autism Tribe, and I’ll see you next week!
Monday May 06, 2019
Monday May 06, 2019
EPISODE 16:
Eloping is an all too common problem among children with autism, so much so that the phenomenon has been on the radar of the CDC for years. It’s described as the urge to leave protected and safe surroundings, such as a home or school, without notifying anyone. It’s also known as wandering, running or bolting.
The two primary reasons that a child may leave their surroundings is to leave a bad situation or to pursue something they want.
If you’ve discovered your child is a runner, you may already be aware of the measure you need to take. If you’re just beginning your autism journey, the idea of your child walking out the door in the middle of the night and vanishing may scare you to death, and you’re not alone.
We’re speaking with Tracey McEntyre today, and she knows firsthand the fear that surrounds elopement. She’s a mother, advocate, friend, STEM educator and business owner. Her most important role is being a mother to her 13-year old son Roman. When her son was diagnosed with autism, they began a new journey of advocacy for Roman, advocating for other families, and reinventing how our children learn.
CONCLUSION:
The CDC offers some helpful tips that can help you prepare in advance in the event that your child bolts:
- Set up an emergency response plan
- Keep a current photo of your child
- Have your child wear an ID bracelet
- Let anyone who may have regular contact with your child know they may wander
- Meet your neighbors and inform them of your situation
- Immediately call first responders
- Teach your child safety commands such as “stop”
- Teach your child to swim
- Teach them how to cross a street
- Meet with any healthcare providers who understand your child’s unique situation and ask for their expert advice
There isn’t any way to ensure 100% that your child is safe in this world. This just isn’t something that is possible for any parent, but with establishing proper safety measures, it will help to alleviate some of the fears that come with the possibility of facing this situation.
For more information you can visit the CDC and Autism Society websites, and of course, as always, please feel free to reach out to My Autism Tribe. Thanks so much for listening and I’ll see you next week.
IMPORTANT RESOURCES:
https://www.cdc.gov/ncbddd/disabilityandsafety/wandering.html