Posted in Down syndrome, Down Syndrome Awareness, Parenting Special Needs

Blog #202~ Down syndrome, A New Beginning

Blog #202~ Down syndrome, A New Beginning

So this just happened, I flew back to Texas over the weekend to be with my niece, who is also my God-daughter.  Courtney recently gave birth to twin boys.  Shortly after their birth last December, she called me with the news that one of the babies might have Down syndrome. The first thing I felt was excitement inside, knowing that God has many blessings coming her way.  I told Courtney that everything was going to be okay, and that I’d be there for her every step of the way.  I know this to be a fact, because I have been blessed for the past 24 years with my son, Nick.

My niece didn’t know that one of her twins would have Down syndrome until after she gave birth.  Just as I did, the initial shock can take your breath away and a myriad of emotions come at you in waves.  However, like me she has rolled up her sleeves and embraced this diagnosis fully.  I couldn’t be more proud of her.

The twins Gannon and Greyson 🙂

Gannon and Greyson

Courtney jumped right in becoming an advocate for her son, Gannon.  Last month, she gave a presentation to her older son’s elementary school class on World Down Syndrome Day……

Gannon WDSD

For World Down Syndrome Day, Courtney had special shirts made for her immediate and extended family, as well as friends…….

Courtney and family

Here’s my son, Nick wearing his shirt to support #gannonsjourney and World Down Syndrome Day….

Nick Down right perfect

There is a lot of love felt in their home, along with a load of testosterone, with four boys under one roof.  Her two little dogs and cat lay on the couches close by, seemingly like protectors providing comfort as we sat and visited.

Gannon and me

It was a great weekend holding, feeding and loving on the twins, along with a few games of Battleship, Candyland, Toilet Trouble and snap chat photos with the older boys.  In between all of this, we had a chance to talk about our experiences together.  During the course of these conversations, I flashed back 24 years ago when I gave birth to Nick.  I told Courtney and her husband Patrick, how the pediatrician pointed out the initial markers that might indicate my son could have Down syndrome.  My doctor gently showed me the brushfield spots in my babies eyes, the larger gap space between the first two toes, and the feeling of low muscle tone in his body.  Courtney gasped when I mentioned my pediatricians name, she thought I was joking.  It turns out that they have the same pediatrician as I did!  Not only that, her husband (who also lived in this same area outside Houston) had Dr. K as his pediatrician growing up.  Courtney started to cry as we found the similarities in our lives being so serendipitous.  They were happy tears.

Who would ever predict that this little niece and God-daughter of mine would follow such a similar path?  At the moment this photo was taken, 28 years ago I was just a doting aunt to her…..

Courtney and me

Here we are 29 years later…..

Courtney Gannon and me

In December, after the twins were born, her pediatrician pointed out similar markers of Gannon possibly having Down syndrome.  I told Courtney over the phone, that she had this.  She was already ahead of the game, with her experience having Nick as her cousin.

Courtney and Nick, 1994…..

courtney and nick

Courtney and Nick, 2010………

photo (116)

I handed my niece this journal, on Saturday.  It felt as though I was passing the baton over, as she starts her own journey…..

Journal

The journey will be filled with highs and lows as she navigates her son having Down syndrome.  As the pen moves across each page, her eyes may be filled with tears during the struggles as he grows.  But there will also be many smiles when he triumphs the milestones of crawling, sitting up, walking, feeding and so much more.  Each benchmark will take longer to reach and require much more work.   But that is what makes these victories even sweeter.  My niece is just beginning this new path, and I both smile and take a deep breath inside, knowing what lies ahead.  My son has changed my life forever and filled me with God’s grace.  Like his cousin Nick, Gannon will touch many lives and teach lessons of gratitude in the process.

That’s what is in my noggin this week. 🙂 

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Follow Gannon #gannonsjourney

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

Blog #201~Baby with Down syndrome named 2018 Gerber Baby

Blog #201~Baby with Down syndrome named 2018 Gerber Baby

The 2018 Gerber baby was just named last month, and he is Lucas Warren, the first child with Down syndrome to receive the honor.  The 18-month-old from Dalton, Ga., was selected as “2018 Gerber Spokesbaby” from more than 140,000 photos submitted by parents.

Lucas’ winning smile and joyful expression won our hearts this year, and we are all thrilled to name him our 2018 Spokesbaby,” Bill Partyka, president and CEO of Gerber, said in a press release. “Every year, we choose the baby who best exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby, and this year, Lucas is the perfect fit.

Gerber baby 2018

The original Gerber baby was Ann Turner Cook, who recently celebrated her 91st birthday. The black-and-white sketch of her face from 1927 became Gerber’s iconic logo. Since then, the company has received a myriad of photos from parents who see their own babies in the famous sketch.

Gerber Baby now and then
Eight years ago, Gerber launched the Photo Search to celebrate these adorable babies.  Lucas’s winning smile and joyful expression won their hearts, this year.  His mother, Cortney Warren was extremely proud:

“This is such a proud moment for us as parents knowing that Lucas has a platform to spread joy, not only to those he interacts with every day, but to people all over the country.
We hope this opportunity sheds light on the special needs community and educates people that with acceptance and support, individuals with special needs have the potential to change the world ― just like our Lucas!” 

Congratulations to Lucas!  Thank you Gerber for recognizing the beauty in all children, and taking an inclusive stance by selecting a baby with Down syndrome.  Every baby really is, a Gerber baby!

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Down Syndrome Awareness, Spread the Word!

Down Syndrome Awareness, Spread the Word!

March is a significant month for raising awareness and acceptance for individuals with Down syndrome and other intellectual and developmental disabilities.  It is time that we as a society, do something to change the way people refer to individuals with special needs.  There are several campaigns and events this month, that I want to highlight!

spread the word 2018

“Spread the Word to End the Word is an ongoing effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support to help create communities of inclusion and acceptance for all people. Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. What started as a youth-led grassroots effort in 2009 by a small group of students with one simple call to action, has evolved to communities across the world not only taking the pledge, but challenging others to talk, think and write with respect.”

Click here and pledge to Spread the Word to End the Word:

https://www.r-word.org/r-word-take-action.aspx#.Wp1zqExFx2s

spread the word tee shirt

 

Be sure and mark your calendar for March 21st, World Down Syndrome Day!

World Down-Syndrome-Day

“World Down Syndrome Day creates a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.  The mission is to promote awareness and understanding, seek international support, and to achieve dignity, equal rights and a better life for people with Down syndrome everywhere. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

Click here for more information about WDSD:

https://worlddownsyndromeday.org/about-wdsd

One of the trademarks of World Down Syndrome Day is rocking your fun, brightly colored, funky socks.  Last year I partnered with We Help Two for a fundraiser and awareness campaign.  Portions of the proceeds went to our local Down syndrome support group, the National Association for Down Syndrome (NADS) http://www.nads.org.  In addition, for every pair of socks sold, We Help Two gives a pair of thermal socks to donate to a local homeless shelter.

funky-socks

Last year, my son Nick and I raised over $500 for NADS and donated 59 pair of thermal socks to The Hessed House, a local homeless shelter.  The campaign was super easy to set up and promote on social media, with minimal time as the host.

Nick and I donating We Help Two thermal socks to the Hessed House……….

Nick and Mom at Hessed House 2

To order or host your own Rock your Funky Socks for WDSD click here:

http://www.wehelptwo.com/

Order socks to directly benefit NADS fundraiser click here: https://my.wehelptwo.com/campaign?id=795

Check out the brand new styles offered this year, by We Help Two :)………

 

 

One more campaign I want to showcase is led by Noah’s Dad, called #Prove Them Wrong. 

“It’s awesome to see so many people with special needs proving to the world that what it may think about them is wrong! We see so many of your children are doing awesome things as well! We want to invite you to be a part of a fun new campaign we’re doing called the #PROVETHEMWRONG campaign and show the world how your children are doing that! I’m going to be making a video for World Down Syndrome Day and I want you / your family in it!” -Noah’s Dad

prove-them-wrong-tee-shirt-noahs-dad-down-syndrome

For more information about #PROVETHEMWRONG click here:

https://provethemwrongshirts.com/

http://noahsdad.com

Our dream as a community of advocates for those living with intellectual and developmental disabilities, is to live in a world where everyone feels respected, loved accepted and appreciated.  Let’s get out there and spread the word this month and make a difference for the future!

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

Winter Update: Nick DS-ASD

Winter Update: Nick DS-ASD

Here’s a look at Nick’s world, and what he’s been up to this winter.  My son Nick, is 24 years old and has a dual diagnosis of Down syndrome and autism.  He attends an adult day program which provides a variety of enrichment activities.  These include work time, communication and learning, recreation, cooking, gardening and crafting.  There are monthly theme parties and game time playing Bingo and Yahtzee.  His group enjoyed a variety of community trips to the grocery store, dining out, library and PetSmart.

Nick relaxing at his adult day program….

Nick AID new chair

Turtle time…..

Nick AID turtle

Crafting, Nick made some awesome pillows…..

Bingo Prize Winner!

Nick bingo prize

Community trip to PetSmart……

Nick Petsmart 1              Nick Petsmart 2

Each week, Nick goes on community outings with his respite caregivers, Jodi and Miss R.  They take him out to the movies, library, mall and to restaurants…..

Over the holidays, Nick celebrated with family here in Chicago and in Key West……

Nick Christmas 2017

Fun in the Florida Keys, including a trip to The Hemingway House……

In February, we celebrated Nick’s birthday in Vail.  Did you read last week’s blog #198, about his adventures in Colorado?

It’s been a busy winter packed with loads of fun for Nick!  Seeing all his smiles in the adult day program, community outings and on vacations assures me that he is having a wonderful life.  Having a dual diagnosis of Down syndrome and autism shouldn’t limit a family from getting out and having fun.  I hope these updates bring inspiration to other families who have a child with special needs.

That’s what is in my noggin this week!

~Teresa 🙂

To see more of Nick’s world check out these social media sites:

Facebook: @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #198~ Nick’s Adventures in Vail

Blog #198~Nick’s Adventures in Vail

Last week, Nick celebrated his 24th birthday in Vail, Colorado.  Nick has Down syndrome and autism, but this doesn’t limit his ability to enjoy life to its fullest.  My son loves the Disney movie, Snow Dogs.  We made reservations for a dog sledding tour with Mountain Mushers, located in Beaver Creek.  Upon our arrival, the dogs were loud and super excited.  They barked and howled expressing their eagerness to run.  Our guide and musher, Cameron led Nick to Sara, an affectionate dog that would be on our team.  Normally Nick gets shy around dogs but he took a liking to sweet Sara.

Nick, Cameron and Sara…..

Nick petting sara dog

The dogs are a mix of Alaskan Huskies, all happy, friendly and truly loved by the staff.  They were certainly ready to race, as they jumped with eagerness.

Here’s Nick and I, with his Dad posing briefly in the musher position, before we started the tour…..

Sled pic

Our musher, Cameron made sure Nick was comfortable.  Before takeoff, he yelled, “Hike” and the dogs took off quickly.  Nick loved it, as he is such a thrill seeker.  Anytime we ride on a rollercoaster and it ends, he always signs “more”.  So, I knew dog sledding would be right up his alley. Once the tour starts, the dogs quiet down and get into a rhythm.  At this point you hear their paws hitting the ground in unison, and the sound of the snow crunching under the runners.  Mountain Mushers runs the tour on private property, with many hills.  We flew up and up and down them, at a rapid pace.  On occasion we would hit bumps on the trail.  Nick loved that part, laughing and saying “Oh $h*t” each time 🙂

dogs in motion

There is something about being in the mountains amongst the Aspen and Pine trees, that is both peaceful and reverent.  The views are spectacular, and it was interesting to see the large bear claw marks scraping up several Aspen trees.  Halfway through the tour, the dogs get a rest.  The staff provided us with a treat of hot chocolate and homemade pumpkin bread.

dogs resting

One of the dogs on our team is blind, and he is paired with his brother, who helps to guide him.  Even though this dog couldn’t see, he was right in the mix.  Each time our musher called him by name, the blind dog leaped in the air kicking up one leg in elation.  It was an amazing experience that Nick and I will never forget.  He’s been watching the movie Snow Dogs everyday since.

Vail is beautiful, and the views are serene.  Nick enjoyed being with his aunt, uncle and our friends last week.  He got such a kick out of being in the hot tub, while snow flakes flew around us.  Nick smiled, blinking them off of his eyelashes as the blustery breeze gave us a jolt of coolness while we soaked in the steamy bubbles.

We celebrated Nick’s birthday with pasta and his favorite, chocolate cake!

Nick 24 Birthday cake

We wrapped up the week, with a trip to the Continental Divide at Tennessee Pass.  The resort overlooks the Sawatch Mountains, with many groomed trails to ski, hike and snow shoe, along with other Nordic adventures.  Our group took the one mile trail via snow shoeing, cross-country skiing or riding up in a snow mobile.

Nick totally loved riding up the hill, zoom-zoom……

snow mobile

At the top of the hill, we took in a spectacular view, watching the sunset with hues that painted a beautiful canvas in the sky…..

Continental Divide Sunset

Tennessee Pass provides a unique, fine dining experience inside a yurt.  A yurt is a circular domed tent of skins or felt stretched over a collapsible lattice framework and used by pastoral peoples of inner Asia.  The resort offers yurts both for dining and sleeping.  The yurt is rustic and toasty inside, with an exceptional four course dining menu.

Tennessee Pass Cookhouse Yurt……

Yurt

Dining in the yurt…..

After dinner, we took a fast pace ride down the one mile trail back to the Nordic center.  The stars and constellations shined vividly in the night sky.  Nick giggled with delight as we flew swiftly through the darkness, on the snow mobile.  It was peaceful and exhilarating all at once.

yurt at night

Our vacation and adventures in Vail were remarkable.  I feel blessed to have the opportunity for these unique experiences, and seeing the joy through Nick’s eyes.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

*Facebook and Pinterest @Down Syndrome With A Slice Of Autism

*Instagram #nickdsautism (I will be posting some video footage of our dog sledding experience, here this week).

*Twitter @tjunnerstall

 

 

Posted in Down syndrome, Feeding, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #197~My son with Down syndrome, 24 years ago: What I learned

Blog #197~My son with Down syndrome 24 years ago: What I learned

Down syndrome journey

Birthdays are often a time to reflect back on our journey in life.  My son Nick, will be turning 24 years old next week.  I didn’t know until after he was born, that he had Down syndrome.  Honestly, I was more concerned for his health more than anything.  After a week in ICU, Nick was released.  The doctor told us to go home and love are baby.  He cautioned me that Nick might not be able to nurse properly and gain weight without having to use a feeding tube.  I thought to myself, “game on, challenge accepted”.  I rolled up my sleeves and got to work.  I hated all those wires that had been hooked up to him in ICU.  I certainly didn’t want any more hooked up to my son, moving forward.

The feeding tube never entered the equation.  Instead, what I found is that we had to work harder to be successful not only in feeding, but in reaching all developmental milestones.  Within 8 weeks, Nick started an Early Childhood Intervention (ECI) program.  Low muscle tone is a trait of having Down syndrome.  The physical, speech and occupational therapists along with his teacher provided strategies to help build strength and endurance.  More important, they gave us pragmatic ways to incorporate these at home in our daily routine.

Nick propped in high chair, supported with a bolster under his legs and pillows on the sides…..

Nick low tone high chair

That is how it all started 24 years ago, with Nick.  I’ve learned a few things while raising my son especially in the early years.  First, is that the developmental milestones take longer to hit, but each mark was met with hard work and persistence.  In addition, find the people and resources that will facilitate, motivate and help to modify your child’s environment to allow them to grow and flourish.  It’s important to keep your expectations high, just as you would with any other child.  But keep in mind, you have to be very patient, because it can take longer to roll over, crawl, walk and feed.  If you feel like your child is stalled in development, then look for other therapies and strategies to push them forward.  This was the case when Nick was a year old and unable to sit up on his own.  His core was so weak due to low muscle tone.  I made the decision to try equine (horseback) therapy which helped him immensely.  This brings me to one more lesson I learned.  Look at finding the RIGHT therapies and services, instead of just adding in more.  Each child is individual and motivated in different ways.

Nick doing horseback therapy in 1995…..

Nick horseback therapy

Consider a variety of strategies, such as infant massage, sensory integration, motor play with proper positioning, and oral motor exercises that can accelerate growth.  Keep in mind what interests your child has, and use those tools to build into play and daily routines at home.  Nick was very motivated by music and enjoyed oral motor activities like blowing and popping bubbles.  His physical therapist would have him sit on a small ball while blowing, tracking and popping bubbles.  Nursery rhymes and signing were also incorporated while sitting on the ball, which acted as a dynamic surface to build core strength.  Siblings can be great with play to stimulate movement and arousal for your baby.

Nick with his brother Hank……

Nick and Hank babies

The challenges associated with low muscle tone and Down syndrome can be met with hard work, persistence, and finding the right support and therapies that will facilitate building muscle strength and endurance for your child.  Early intervention will help to build a solid foundation which allows your child to become their best self.  Nick’s come a long way since the days where he was propped up with bolsters and pillows.  He is a strong, funny, helpful, mischievous and happy young man. Next week, we will be on vacation in Vail to ring in #24.  No blog next Monday, but you can catch Nick on social media. Happy Birthday to you Big Guy!

Nick in Key West, over the Christmas holidays 🙂 ….

Nick Key West

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

Blog #196~Netflix Comedy Special “Disgraceful”

Blog #196~ Netflix Comedy Special “Disgraceful”

The Netflix comedy special, “Disgraceful” by Tom Segura has recently sparked outrage in the Down syndrome community.  The comedian, known for pushing the boundaries, talked about how you can’t use the words, “that is retarded” anymore.  In this act, he takes it a step further by suggesting that it be replaced with the term, “extra 21st chromosome,” directly mocking people with Down syndrome.  The words used in this program are wrong, offensive and by definition hate speech.  I wouldn’t be doing my job as Nick’s mother if I didn’t advocate for my son, and other individuals having Down syndrome.

To view the full transcript of this piece along with how the Down syndrome community and leading support groups are responding click here:

https://themighty.com/2018/01/tom-segura-retarded-down-syndrome-netflix/?utm_source=search&utm_medium=site&utm_term=Tom%20Segura%20Netflix

Netflix is promoting this special, “Disgraceful” by claiming this comedian “gives voice to the sordid thoughts you never say out loud”.  So it appears that these “sordid thoughts” about people having Down syndrome are fair game.  We live in a country where there is freedom of speech, and certainly comedians push boundaries all the time.  But it is extremely hurtful and offensive to make a joke at the expense of people like my son, and other individuals who have Down syndrome.

Change.org has a petition that calls for Netflix to:

*Remove the anti-down syndrome rhetoric from the show.

*Take the anti-disability sketch out of the trailer for the show.

*Issue a public apology for perpetuating hate speech and stereotype to the Down syndrome community.

take it down netflix

To sign the Change.org petition click here:

https://www.change.org/p/netflix-take-it-down-netflix

If you have a Netflix account you can also give “comedian” Tom Segura a thumbs down.

Using the R-word and mocking individuals who have Down syndrome is NOT funny, in fact it’s disgraceful.  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, 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 Autism, Down syndrome

Blog #193~CNN Hero of the Year 2017: Amy Wright of Bitty & Beau’s Coffee

Blog #193~CNN Hero of the Year: Amy Wright of Bitty & Beau’s Coffee

bitty and beau coffee shop

Last night Anderson Cooper and Kelli Ripa presented the CNN Hero of the Year 2017 award to Amy Wright, who founded Bitty & Beau’s Coffee.  Inspired by her two youngest children, Bitty and Beau, who have Down syndrome, she set out to empower and advocate for people having disabilities by providing meaningful employment.  Amy Wright is the founder and CEO of Bitty & Beau’s Coffee which employs 40 individuals living with intellectual and developmental disabilities ranging from Down syndrome to autism to cerebral palsy.

bitty and beau three

It’s more than a coffee shop…”Bitty and Beau’s Coffee creates a culture where diversity is not just appreciated, its celebrated.”

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.

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Congratulations to Amy Wright, CNN Hero of the Year 2017 for creating a culture of inclusion and putting 40 individuals with disabilities to work! With the award, she will receive $100,000 from CNN to grow her cause.

CNN Heroes .jpg

Amy finished her acceptance speech with these powerful words to her children Bitty and Beau who were watching the show at home:

“I would not change you for the world, but I will change the world for you.”

Her powerful statement promotes acceptance and inclusion which I find inspiring.  Bravo to you, Amy Wright and Bitty & Beau’s Coffee for making a difference.

For more information visit the website and social media links: https://www.bittyandbeauscoffee.com/about/our-story/  Follow Bitty & Beau‘s Coffee on Facebook and Instagram!

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick:

Facebook and Pinterest @Down syndrome With a Slice of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

https://www.bittyandbeauscoffee.com/about/our-story/