Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs, IEP (Indivdualized Education Plan)

Blog #195~ Being a Firestarter

Blog #195~ Being a Firestarter

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are “Firestarters” and, because of them, the world is a much different, and often, better place.

Fire

Are you looking for a way to ignite your life and dreams?  Firestarters-How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Own Life,  is a new book released last week; that will help you to do so. As I wrote in last week’s Blog #194, Firestarters are innovators, instigators and initiators that get things accomplished.  Recently I had the opportunity to interview one of the co-authors of this new and powerful book, Paul Eder along with a featured Firestarter, David Egan who is an advocate for special needs.  This week, I am sharing more on these interviews about being FIRESTARTERS!

Firestarters

David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.  David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David Egan-Advocate Photo

He believes in promoting the idea of people with disabilities having special talents.  David states that people with intellectual disabilities should be included in as many sectors of our society as possible, and being featured as a leader in this book makes made him proud.  The most important part of his advocacy is to demonstrate that people like himself are Valued, Able, and Ready to work.

David Egan Work Photo         David Egan swimming

“We are citizens that matter and we belong in our community.” -David Egan

David-Egan-Capitol-Hill-2011

“People with intellectual disabilities do not want pity; we want respect, inclusion, and the opportunity to reach our full potential like any other citizen.” -David Egan

Paul Eder is the co-author of Firestarters along with Raoul Davis JR. and Kathy Palokoff.  From early on, Paul Eder wanted the book to be inclusive.  He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.  Paul says that a Firestarter is partially defined by the impact you have on others. His son, Brady has certainly impacted his life.  Paul hopes his son’s achievements go beyond and push the boundaries like David Egan.

I asked Paul how he plans to use the concept of Firestarters to help navigate his son through school and working with IEP team members? 

Paul said that, “The IEP (Individualized Education Plan),  generally taps into a number of the concepts we discuss in the Firestarters book, but the section on Accelerants is very relevant. Accelerants include: Mission-focused behavior, Cooperation, Constructive competition, sweat equity (working hard), and support seeking.”

Paul goes on to further state this about IEP’s:

“An IEP certainly focuses on the mission surrounding your child’s educational path. From a cooperation perspective, the IEP defies all the supporting partnerships that are necessary to propel his success.  All of the IEP goals are measurable, which gives it a competitive flair. We want the goals to be challenging but not impossible, and we want to be able to compare his progress against some standard of success (e.g., grade-level expectations). My son has a daily behavior log where his social and academic behaviors are tracked. From this sheet, we are able to tell whether he is putting in his full effort and devoting the sweat equity needed to learn. Support-seeking is an obvious one.”

“The IEP team is a support structure in itself.  As parents, we can’t be afraid to ask the questions needed of the team and push for the supports required to ensure his success.” -Paul Eder

I asked Paul how can someone support the Firestarters in their lives, especially those with potential but who may have special needs?

In the book we define 4 types of supporters based on the research we conducted:

1.Nurturers listen and help you follow through with your ideas.
2.Motivators get you moving. They are people like Tony Robbins who exude an energy that make you want to be a better person.
3.Illuminators are the teachers in your life who help you grow socially and intellectually.
4.Protectors are the people who defend you when others won’t.

A FIRESTARTER, seeks support to fan their flame, and finds ways to limit the influence of Extinguishers.

As we begin 2018, what do you want to accomplish?  Find the people who can support you and don’t allow the extinguishers to have power over your life.  We’ve all met FIRESTARTERS, and seen what they’ve accomplished.  They create, disrupt and start things.  The book FIRESTARTERS  interviewed successful entrepreneurs, CEO’s, organizational leaders, advocates and forward thinkers from a variety of professions to find out what makes them tick.  There are step by step guides to teach you how to join the ranks in whatever you want to accomplish.

For more information about FIRESTARTERS click here: https://goo.gl/4VmHKo

Thank you to Paul Eder and David Egan for sharing your inspiring stories of being FIRESTARTERS, who make the world a better place!  That’s what is in my noggin this week.

~Teresa 🙂 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs

Blog #194~ Firestarters

Blog #194~ Firestarters

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are “Firestarters” and, because of them, the world is a much different, and often, better place.

Recently, one of the co-authors of a new and powerfully motivating book, Paul Eder reached out to me to do an exclusive interview about Firestarters- How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Life.

Firestarters

There is a big difference between people who MAKE things happen and those who only THINK about making an impact.  So many people have dreams, yet few are willing to take action.  The authors of Firestarters set out to find the “secret sauce” providing pragmatic advice for readers to ignite the qualities from successful entrepreneurs, CEO’s, organizational leaders, advocates and forward thinkers from a variety of professions.  Co-Authors Raoul Davis JR., Kathy Palokoff and Paul Eder did extensive research interviewing and studying hundreds of people who have all been a catalyst for change.

In my interview with co-author Paul Eder, he states that a Firestarter is someone who makes an impact, someone who presses forward in the face of challenges that would cause others to run the other way.

There are 3 types of Firestarters in the book:

*Innovators create things.

*Instigators disrupt things.

*Initiators start things.

All three types are bonded together by the great impact they have on other people and the world by creating, disrupting and starting things.  So, how do you know if you’re an Innovator, Instigator, or an Initiator?  The book provides a quiz that you can take, but the short answer is to investigate both what motivates you and how you interact with others.

*Do you like to explore new ideas for the sake of exploring them? Do you come up with your own pet theories of how the world works? You may be an Innovator.

*Do others always call you out for debating too much? Do you strive to be different and do things in a way no one has done? You may an Instigator.

*Are you constantly moving? Do you have the energy of 10 thoroughbreds and need to sleep only 4 hours a night to be fully effective? You may be an Initiator.

Firestarters aren’t constrained to one type. Different situations may require you to act more like an Innovator. Others require you to be an Initiator and just get things done. Firestarters are amazing in that they are flexible to tap into all three types as needed – when most people would be more likely to stick to their default type, according to Paul.

From early on, Paul Eder wanted the book to be inclusive. He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.  The Firestarters concept  applies to CEOs of mega corporations as well as PTA moms. There are interviews John Sculley, a former CEO of Apple and present his profile at a similar level of prominence of David Egan, who has Down syndrome and is a self-advocate who has single-handedly re-defined the perceived capabilities of people with intellectual disabilities.

David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.

David-Egan-Capitol-Hill-2011

In my interview with David Egan, he showed great passion about being an advocate with an ongoing commitment that never ends. His dream is to help people with intellectual disabilities.  All of his jobs and activities have been very important. However, being  selected as the first person with intellectual disabilities to serve as a JP Kennedy JR. Public Policy fellow was an honor and a breakthrough.  Previous fellows were doctors, professors, parents, educators or with physical disabilities but David made history and is proud to follow in the vision of Eunice Shriver, the founder of Special Olympics. She believed that we belong and we have the same rights as any other citizen.

Paul Eder feels his 6-year old son Brady, who has Down syndrome will follow the path forged by David Egan, in not allowing a label to define his future. A diagnosis is not a destiny.  Down syndrome isn’t a determinant of his son’s potential.  This is a powerful message on never setting limits!  This message has resonated with me for the past 23 years in raising my son, Nick- who has a dual diagnosis of Down syndrome and autism.

Next week, I will share more of my interviews with Paul and David with their great insights on being a Firestarter.  Here is a review of this book from Forbes magazine: https://goo.gl/eznjQx  If you are looking for a way to set your goals in motion and take action for 2018, I highly suggest reading Firestarters!  

This book will be released tomorrow, January 9th, click here to learn more: 

https://goo.gl/4VmHKo

Fire

Is this the year you are going to MAKE things happen, or just think about it?  What things or people threaten to extinguish your fire?  Set your goals and be a Firestarter, that’s what is in my noggin this week.

~Teresa

 

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

Blog #219~ The Faces of Down Syndrome

Blog #219~The Faces of Down Syndrome

The faces of Down syndrome are more prominent in 2018, than they were 24 years ago when my son, Nick was born.  Acceptance and inclusion are two things we advocate everyday, and especially in the month of October, which is Down Syndrome Awareness Month.

Down syndrome awareness month

This week I want to highlight some of the faces of individuals with Down syndrome who are making a difference, by advocating acceptance and inclusion.  There are more models with Down syndrome in the media, thanks to companies like Target and all the way up to New York fashion week.  In addition, television shows are featuring actors with Down syndrome.  Trailblazers are advocating for job opportunities and making a difference.  Here are some of the faces of individuals who have Down syndrome, and advocates who are paving the way.

btway

*A&E’s Emmy winning series Born this Way 🙂

“Winner of the 2016 Emmy Award for Outstanding Unstructured Reality Program, Born This Way follows a group of seven young adults born with Down syndrome as they pursue their passions and lifelong dreams, explore friendships, romantic relationships and work, all while defying society’s expectations.  In their willingness and courage to openly share their lives, through a lens that is not often shown on television, we learn they have high hopes just like anyone else. The series also gives voice to the parents, allowing them to talk about the joy their son or daughter brings to their family, and the challenges they face in helping them live as independently as possible”.

Read my exclusive interview with Sandra Assismotos McElwee (author of Who’s the Slow Learner? A Chronicle of Inclusion & Exclusion) and mother of cast mate Sean McElwee here: https://nickspecialneeds.com/?s=born+this+way

*CNN’s Hero of the Year Amy Wright of Bitty and Beau’s Coffee 🙂

bitty and beau coffee shop

CNN Heroes is a television special created by CNN to honor individuals who make extraordinary contributions to humanitarian aid and make a difference in their communities. Amy Wright started a grass-roots movement, opening up Bitty & Beau’s Coffee, which is located in Wilmington, NC. National statistics have shown that 70% of people with intellectual and developmental disabilities are unemployed. Her mission is to provide purposeful jobs that bring the community together, and helps people with and without disabilities to spend time together.

Read my blog about Bitty and Beau’s Coffee: https://nickspecialneeds.com/?s=bitty+and+bo

*Firestarter Advocating for Inclusion on Capitol Hill David Egan 🙂

Firestarters

One of the featured individuals in the book Firestarters is David Egan.  David is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee. David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David-Egan-Capitol-Hill-2011

Read more about this Firestarter David Egan and co-author Paul Eder in my exclusive interview at this link: https://nickspecialneeds.com/?s=firestarter

*We are seeing more actors and models with Down syndrome in prominent roles! 🙂

Chris Burke was a trailblazer starring in the TV series, Life Goes On:

Chris Burke 2

Lauren Potter star of Fox’s hit show Glee:

potter27.jpg

Jamie Brewer stars in American Horror Story:

American Horror Story jamie Brewer

Madeline Stuart and Maria Avila are changing the face of beauty and diversity in the world of fashion, both have walked at NY Fashion Week!

madeline stuart    maria avila

*2018 Gerber Spokes Baby Lucas Warren 🙂 

Gerber baby 2018

Read more about 2018 Gerber Baby, Lucas in my blog: https://nickspecialneeds.com/?s=gerber+baby

It’s wonderful to see more of these beautiful faces in the media.  How amazing to read about advocates who are opening up doors for employment and being applauded for their efforts!  Individuals with Down syndrome have goals and dreams, and want the same things as everyone else.  They need opportunities and to be included without barriers.  Let’s move beyond awareness about Down syndrome, towards acceptance and inclusion!

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son, Nick where you will find more stories and faces of DS:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Resource Book Shelf

Supporting Positive Behavior in Children and Teens with Down Syndrome, by David S. Stein, Psy.D. (Woodbine House)

When Down Syndrome and Autism Intersect-A Guide to DS-ASD for Parents and Professionals, by Margaret Froehlke R.N. and Robin Zaborek

Who’s The Slow Learner? A Chronicle of Inclusion and Exclusion by Sandra Assimotos McElwee

Count Us In..Growing Up With Down Syndrome, by Jason Kingsley and Mitchell Levitz

Road Map to Holland… How I Found My Way Through My Son’s First Two Years With Down Syndrome by Jennifer Graf Groneberg.

A Parents Guide to Down syndrome…Towards a Brighter Future, by Siegfried M. Pueschel.

Better IEP’s by Barb Bateman

How Well Does Your IEP Measure Up by Diane Twachtman-Cullen and Jennifer Twachtman-Reilly.

Taking Care of Myself by Mary Wrobel

Social Rules for Kids..The Top 100 Social Rules Kids Need to Know to Succeed by Sue Diamond

The Sibling Slam Book-Edited by Don Meyer available through Woodbine House.

Special Education Laws by Wright and Wright

Speaking of Apraxia…A Parents’ Guide to Childhood Apraxia of Speech, by Leslie A. Lindsay

How To Be A Para Pro by Diane Twachtman-Cullen

1000 Great Ideas for Teaching and Raising Kids With An Autism Spectrum Disorder by Ellen Notbohm and Veronica Zysk

The Out of Sync Child Has Fun…Activities for Kids with Sensory Processing Disorder by Carol Kranowitz

101 Games and Activities for Children with Autism, Asperger’s and Sensory Processing Disorder by Tara Delaney

Starting Sensory Integration Therapy by Bonnie Arnwine

Red-Yellow-Green Framework for Respectful Discipline by Ada Alden

Firestarters How Innovators, Instigators, And Initiators Can Inspire You To Ignite Your Own Life by Rauol Davis Jr., Kathy Palokoff and Paul Eder

Favorite Things

*Supporting Positive Behavior in Children and Teens with Down Syndrome, by David S. Stein, Psy.D

Book Supporting Positive Behavior DS

*When Down Syndrome and Autism Intersect, by Margaret Froehlke and Robin Zaborek:

down syndrome and autism intersect

*Apraxia of Speech: A comprehensive guide for parents who have a childhood apraxia of speech by Leslie Lindsay.  Available in bookstores and at Amazon.com.

Firestarters How Innovators, Instigators, And Initiators Can Inspire You To Ignite Your Life  Available in bookstores and at Amazon.

Firestarters

*Jewelry:  I found some great bling bracelets made by Kelly Neville, She has her own business and is a beautiful young lady who just happens to also have Down syndrome.   Special Sparkle, A special kind of Jewelry Company check it out @ http://www.specialsparkle.com!

*Brittany’s Baskets of Hope Provides welcome baskets to families who have a baby with Down syndrome, free of charge.  To request a basket or make a worthwhile donation http://www.brittanysbaskets.org

brittanys-baskets-of-hope-logo

*Special Clothing: Downs Designs provides a stylish clothing line with proper fitting for unique body types associated with having Down syndrome which is easy to get on and off @http://www.downsdesigns.com!

*Swim diapers, weighted blankets, etc: @https://squareup.com/market/specialneedsawareness

*Buddy Up Tennis: High energy, adaptive tennis, and fitness program for children and young adults with Down syndrome http://buddyuptennis.com/

*Favorite Links:  Click over to Helpful Links and Resource Book Pages for many more