My Autism Tribe

EPISODE 7:

Autism ranges from person to person. It can’t be physically detected and can confuse those who aren’t touched by it.

 One amazing individual, was diagnosed with autism at the age of 3, and is now a practicing attorney in Miami, Florida. Her name is Haley Moss, and she graduated with her Juris Doctor from the University of Miami School of Law in 2018. She graduated from the University of Florida in 2015 with Bachelors degrees in both Psychology and Criminology. Haley is also a renowned visual pop artist, and the author of three books. She has recently gained national attention with People Magazine, CBS News, CNN, USA Today, and The Today Show. To say this young woman is making a positive impact, would just not be enough. Haley continues to prove time and time again that her diagnosis does not set limits on achievements.

HALEY MOSS: BIO

Haley Moss was diagnosed with autism at age 3 and is now a practicing attorney in Miami, Florida. She graduated with her Juris Doctor from the University of Miami School of Law in 2018, and graduated from the University of Florida in 2015 with Bachelors degrees in Psychology and Criminology.

She is a renowned visual pop artist and the author of “Middle School: The Stuff Nobody Tells You About” and “A Freshman Survival Guide for College Students with Autism Spectrum Disorders: The Stuff Nobody Tells You About.” She also was the illustrator and a contributor for the Autism Women’s Network anthology “What Every Autistic Girl Wishes Her Parents Knew.” Her writing has been featured in HuffPost, Elite Daily, The Mighty, and other websites and publications.

Haley was most recently honored with the 2019 Occhigrossi Family Youth in Service Award, the 2018 Publix Self-Advocate of the Year, the 2018 UM-NSU CARD Outstanding Self-Advocate, and the 2018 Voices of Hope Honoree by Birch Family Services in New York City. She was also recognized as a BlogHer 2016 Voices of the Year honoree and one of South Florida’s Young Leaders in Philanthropy. She was also presented with the Council For Exceptional Children’s Yes I Can! International Award in April 2011. Haley created the featured artwork as well as being presented with the Teen Hero Award at the 10^th Annual Samsung Hope for Children event in June 2011.

She is currently serving on the constituency board for UM-NSU CARD and previously served on the board of Unicorn Village Academy.

SUMMARY

Always remember that a diagnosis is not a tragedy. It takes an open mind, lots of listening, and asking a ton of questions. Knowledge is power! One type of therapy that works for one child may not work for another. Be open to all types of therapies, and don’t be afraid to set high expectations. Most of all, unconditionally love your child. Find their amazing strengths and focus on those.

Thanks so much for joining My Autism Tribe!

EPISODE 6:

Despite the challenges associated with autism, there are so many individuals on the spectrum that are inspiring us all and proving that challenges can indeed be overcome.​

One such individual is Armani Williams. He was diagnosed with autism spectrum disorder at the age of two-years-old and was considered nonverbal. He is now the first openly diagnosed autistic NASCAR driver. To date, Armani has 18 wins and two championships.

Autism is a disorder that is characteristically marked by difficulty focusing on and processing different stimuli and tasks simultaneously, in addition to complications with communication. These are two key skills for any race car driver. Initially, it seemed that Armani’s dream of becoming a professional NASCAR driver was impossible.

When he was eight-years-old, Armani began competing in go-kart racing, then bandolero styles vehicles, and quickly progressed to professional series. He raced in the ARCA Truck Pro Series in 2016, signing with SPEAR MotorSports. He broke records by becoming the highest finishing African American in a series race and the highest finishing African American in the series championship.

The same year, Armani was invited to compete in the NASCAR Drive for Diversity Combine and returned to the competition for a second year in a row.  2017 saw Armani move up to a higher level of competition to hone his skills as a race car driver and gain confidence in the former NASCAR Canadian Tires  Series now the NASCAR Pinty’s Series of Canada. He was coached by the team general manager and driver Joey McColm, along with NASCAR Monster Energy Cup driver D.J. Kennington. ​

His personal diagnosis with autism and success on the track inspires his philanthropy off the track. In 2015, Armani and his family established the Armani Williams Race 4 Autism Foundation to raise awareness and promote research.  He continues to speak to audiences and make appearances to local communities during race week to drive action and hope. 

Some may have viewed Armani’s dream of becoming a professional NASCAR driver impossible. But Armani didn’t accept impossible, and his great support system has made Armani’s future, both on and off the track, both remarkable and bright.

Race 4 Autism: https://www.teamarmaniracing.com/ 

https://www.youtube.com/watch?v=0Pt0x_Kbq1Y

EPISODE 5:

Inclusion is a popular topic in the autism community, and for good reason. Often times, inclusion is mentioned in the educational setting, however it is much more than that. The definition of inclusion, when paired with diversity, is the deliberate act of welcoming diversity and creating an environment where all different kinds of people can thrive and succeed. Put simply, diversity is what you have. Inclusion is what you do.

 Today we’re speaking with Kathryn Jenkins. She is a mom of three boys. Her oldest son was diagnosed with Autism at 2 years old, and is now 8. She became an advocate for him and is now an advocate for the autism community as a whole. She wrote and published her first book, Inclusion Alphabet in October 2018 and has subsequently been able to speak to schools and community groups on the inclusion topic.

 “These simple strategies are based off how I initially started to connect and include my own son. I also want to point out that these strategies can be used for kids, adults, families, classrooms, and within the community. I teach and speak about these same 10 for everyone because I really think it applies to everyone.

 Also in my research, I am seeing a lot of kids struggling with bullying but even more so with loneliness. I think that’s a huge topic that needs to be addressed, especially in the autism community and I feel like these 10 are a good way to start engaging and creating respect amongst everyone. “ – Kathryn Jenkins

10 Simple Strategies to Start Including Someone Who is Different. 

1. Get into his or her world— you might need to be prepared to give before you take, my son loved numbers and running so we counted and ran. In another example, they might not want to join you and play basketball at recess but they might be willing to play something they like first. Be willing try what they want first 
2. Listen through words and behavior —you can learn a lot about why someone is doing something or not doing something by observing, not saying a word, and seeing how things play out. Sometimes you receive feedback and can listen to that person, other times through consistent behaviors — you find a solution to make the relationship work or to correct or understand that behavior. 
3. Try at certain and predictable times — people like to know what to expect especially if there is anxiety or trauma associated with their differences. Simply knowing that they will be trying to be a friend during this time of day or that they can help that process and get things started makes it easier. (Ex: engaging at lunch each day, or for a few minutes before the start of class, talking in the evening before bed or at the dinner table) 
4. Set up for success — this was said to me over and over by therapist, and now I know (ex: start with smaller goals or requests and move from there, adapt your surroundings)  
5. Be consistent, keep your promises — trust plays a huge role in relationships. Even when people don’t act like it, they want to count on you. No one ever wants to feel betrayed or lied to and even though it’s a small thing, it’s probably not to that person. 
6. Engage in a unique way — Engagement and play time might be different. It might be side by side play, it might be watching someone play a video game and not talking, it may include adapting your equipment so that you can still play a game of basketball, perhaps you are going to use a different ball or you are going to change the rules. You might choose to play a board game without rules and engage that way. Be creative, and flexible. 
7. Accept the differences, find the similarities — even though Johnny paces or has stimming behaviors that make him more comfortable and that is different; Johnny still likes Minecraft and Legos and Pokemon. There are similarities to find. 
8. Forgive, say sorry, and forgive again — so easy to preach and so hard to do but without forgiveness, Inclusion cannot exist. 
9. YOU are part of the inclusion team too — we focus so much on including others that have been excluded that sometimes it’s the caretaker or the friend that ends up feeling alone. Make sure it’s working for everyone is key because if it’s not, it’s not working for anyone. 
10. Educate yourself — read books, watch movies, gain more insight through experience. Knowledge is power and I find as we gain more knowledge and experience, we gain more understanding and empathy too. 

“Inclusion to me is the process of accepting, supporting, creating, and finding opportunities for each person to reach their full potential regardless of race, religious beliefs, ethnicity, sexual identity, physical or psychological ailments, intelligence, differences, or other attributes that may set them apart from you. It is not about placement or being in the same room together. Inclusion allows us to be our best selves and it shouldn’t stop or hinder anyone else’s ability to succeed. Everyone’s potential has value and is worth promoting. “ – Kathryn Jenkins

Instagram: @Inclusion_Project 

Inclusion Alphabet: https://www.amazon.com/Inclusion-Alphabet-Everyone-Kathryn-Jenkins/dp/1732740429/ref=sr_1_1?ie=UTF8&qid=1550103357&sr=8-1&keywords=Inclusion+alphabet

Website: https://www.inclusion-project.com/

EPISODE 4:

Heather Sutcliffe is a working mom of two sons, who both have an autism diagnosis. For more than 12 years, she has advocated fearlessly to ensure her sons receive robust and consistent programming to make progress and achieve. A strong believer in coming at this diagnosis from all angles, she never takes her foot off the gas and continually looks at ways to fine tune her sons’ interventions. To honor the progress ABA therapy has made possible for her family, she recently launched a non-profit organization to support ABA for autism. Her first campaign running through 4/2/19 is to raise $5,000 that will go toward covering tuition for Simmons University students studying ABA. In addition, to reduce the ramp up time for parents and families dealing with a recent diagnosis, Heather is in the process of creating a website and blog to share what she has learned on this journey so far. Heather is passionate about giving her sons the best possible chance to overcome the challenges they face while inspiring and empowering other families to do the same.

Heather is a mentor, coach and cheerleader for other parents facing an autism diagnosis. Her extensive professional work experience in the fields of marketing and communications, is supplemented by her volunteer experience. She currently volunteers as a Support Parent with Family Ties of Massachusetts and was recently selected by Autism Speaks to be a Autism Speaks Volunteer Advocacy Ambassador. She is also a Board Member of a pediatric wellness center in Massachusetts.

PODCAST SUMMARY

The Importance and Power of ABA:

• Completely individualized for the child and situation, transcending all levels of ability
• Data driven to prove progress, then continue building on it
• Scaffolding necessary for success and progression
• Principles of ABA can be applied to our every day life to keep things going at home and in the community (can share some tips here)
• About both quality and quantity (can share some tips here)

“ABA (Applied Behavior Analysis) therapy has been absolutely vital to help our sons make progress after an autism diagnosis. 12 years in, it is still teaching me how to manage situations AND helping our sons make achievements. As it pertains to autism, simply put: ABA therapy helps our sons exhibit more expected behavior and less unexpected behavior. It truly has the power to make any situation more successful, transcending any level of ability. For me, this diagnosis has always been about one thing: Achievement. As the world moves from awareness to acceptance, we parents have always been focused on achievement. Because everyone has the chance to progress from the point they are currently to something more. ABA Therapy, a science rooted in data, makes achievement possible.”

You Get Out What You Put In:

• It is ok to be a control freak here--it is your child!
• Know and believe that you are the expert in your child, no one else.
• Play a consistently engaged and active role; observe sessions and ask questions
• If your gut tells you something listen to it...
• Don't settle
• Be hungry for information; seek it out and add it to your expertise
• Come at this from all angles and keep fine tuning.

 “You are the HUB and the GLUE of communication (doctors, specialists, schools, insurance, therapists, home assistance) and you connect the dots for everyone and keep reminding of the objective (for your child to live safely and independently in this world). This takes work and constant engagement. Thank goodness for iphones. :-) But I believe in what I call a "complete puzzle": Parents will ensure all the pieces to the plan are in place and that we are attacking this. The plan needs to be fluid, but it is possible to go to bed at night and know you are doing everything you can.”

The importance of a network:

• Other parents: To bounce things off of, get referrals from, complete understanding.
• Providers and specialists: So if there are changes (or valleys and there will be) there is never a gap and always someone to call.

And, finding what keeps you going:

• A picture with your child looking at the camera so you can stare into their eyes for as long as you wish.
• Or when you visit someone you haven't seen for awhile, and they are so impressed by the cumulative progress your child has made, that may get lost since you see them every day.
• I also recently put a photo book together for my younger son, and it was such a good way to see all that he had tried...looking at it cumulatively.

EPISODE 3:

Many autism families struggle with making the choice on inclusion in the school classroom. Is inclusion the right choice for your autistic child? Some children will really thrive in an inclusive setting, but inclusion may not always be the best choice. Inclusion may also work well for a period of time, but then become more difficult as the child grows older. Perhaps a child needing a specialized autism support classroom when they’re young, may mature to the point where inclusion is a great option.

In today’s episode, we’re speaking with educator Amanda Shepherd. She just so happens to also be an autism mom. Amanda has professional (and personal) experience surrounding the inclusion, school choice, therapy, and IEP topics. She’s really excited to come along side to support and help others in their journeys as well.

QUESTIONS ABOUT YOUR CHILD AND YOUR SCHOOL DISTRICT THAT SHOULD HELP YOU FIND THE ANSWERS THAT YOU NEED:

School Related Questions

Every school district has a different level of commitment to and support for inclusion. In addition, different districts have different ideas about what inclusion looks like and for whom it is most appropriate. With that in mind, it's helpful to do the research required to answer these questions about your particular district and school.

• What kinds of support does your school district offer to ensure success in an inclusive setting?  Your district will not provide you with a "menu" of autism support options because, in theory, every child's program is developed for that child's unique needs. The reality, however, is that most schools have a limited list of options which might (or might not) include teacher training, inclusion support staff, resource rooms, aides, therapists, and so forth; if your child's needs don't fit their offerings it can be tough to make inclusion work. To find out what's really available, visit the schools and ask probing questions of administrators, teachers, and other parents.
• How flexible is the district relative to different learning styles and behavioral issues?  In some districts, teachers have a fair amount of creative license and may use technologies or other tools to help kids with different learning styles to understand what's being taught. In other districts, teaching is mainly lecture-style—an approach that's very tough for many kids with autism who have difficulty with following rapid spoken language. Some districts have flexibility regarding behavior: kids who need to get up, pace, rock, or flick their fingers are allowed to do so within reason. Other districts are very strict about unusual behaviors, which can make learning almost impossible for some autistic students.
• How well does the district work with parents? Other parents and your own observations will quickly tell you whether the district works with or against special needs parents. Obviously, it will be harder to work with a district that sees parents as the enemy!

Student Related Questions

Even if your district has a wide range of supports and resources for their students with special needs, your individual child might not be right for inclusion. Inclusive settings, particularly after grade two, tend to have 20+ children in a classroom with a single teacher. They often move from concept to concept quickly and may require children to respond instantly to teachers' questions or requests. Some children with autism (with or without support) can manage such settings; others find them extremely stressful. By answering these questions about your child, you'll have a better sense of whether inclusion is right for him or her.

• How does your child learn? Even the best general education classrooms rely largely on verbal instruction (particularly after grade two, when students must prep for standardized tests). If your child really can't process spoken or written language quickly, the general education classroom may be a poor match for his academic needs. Even with an aide, your child may wind up in the same space as typical learners, but otherwise completely segregated.
• Just how difficult are your child's behaviors? While you may be within your legal rights to insist that a child with really severe behavioral challenges be placed in an inclusive setting, such a setting may not make sense for your child or his classmates. Inclusion is intended to foster positive peer relationships and increase a child's chances of doing well in a typical setting; a child who screams, hits, or otherwise upsets his classmates and teacher is unlikely to gain those benefits. Your child may do better, at least for the time being, in a setting where behavior modification is a major part of the academic program.
• How does your child feel about the inclusive setting? Every child with autism is different. Some children thrive in an inclusive classroom but others feel ostracized or may even be bullied. Yes, those issues can be addressed in many cases, but for some youngsters, at least for some period of their lives, a more specialized classroom may be a better social fit. 

CONCLUSION

The more you know about your district, your child, and your own tolerance for challenging school situations, the easier it will be for you to make a smart decision about your child's academic setting. Bear in mind that everything you decide today may change, as a new superintendent, new teachers, new classmates, or your child's new skills make inclusion more or less desirable.

References: https://www.verywellhealth.com