Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #220~Down Syndrome Good Reads

Blog #220~Down Syndrome Good Reads

October is Down Syndrome Awareness Month.  This week, I want to highlight books associated with Down syndrome.  You can click on my resource book shelf page, to view a comprehensive list of books:  https://nickspecialneeds.com/resource-book-shelf/

Woodbine House is the gold standard for resource books related to Down syndrome and other intellectual and developmental disabilities for parents, family members, children, teachers, and other professionals.  This publishing company has over 40 books on Down syndrome with a  30% discount this month! http://www.woodbinehouse.com/product-category/down-syndrome/

Woodbine House Sale

There are a lot more books on Amazon, related to Down syndrome.  One that caught my eye, with a 5 star rating and solid reviews is The Parent’s Guide To Down Syndrome by Jen Jacob and Madra Sikora.  The reviews for this book state that it is upbeat, current, informative, insightful, and a fun and easy read:

parents guide to DS book

https://www.amazon.com/Parents-Guide-Down-Syndrome-Information/dp/144059290X/ref=sr_1_1?ie=UTF8&qid=1539620279&sr=8-1&keywords=The+parents+guide+to+Down+syndrome

In addition to books for parents, teachers and professionals, there are many children’s books about Down syndrome both on Amazon and in my resource book shelf link, that I listed above.

 

Promoting acceptance and inclusion are two goals of Down syndrome Awareness Month.  Many parents and advocates do presentations at schools and in their community, incorporating book reads and power point presentations to educate others.

Donating books to local public and school libraries is a great way to spread the word about Down syndrome.  Many Down syndrome support groups provide materials, like bookmarks and calendars, that can be distributed as well.  In addition, these support groups often provide training to become a speaker and advocate.  Check with your local support group to see if they have a resource libray with books, tech and other resources to help families who have a child with Down syndrome.

Gifts book cover

The books and links I provided here, will help parents, family members, teachers and professionals better support a child having Down syndrome.  In particular, the Woodbine House books provided me with encouragement, understanding and practical tips for growth/medical management, academic skills in reading/math, gross and fine motor development.  This gave me more confidence to better advocate and help my son, Nick who is now 24 years old.

I hope these good reads provide a lens on the subject of Down syndrome to further educate, and promote acceptance and inclusion.  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

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

 

 

 

 

 

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

October is Down Syndrome Awareness Month

October is Down Syndrome Awareness Month

Down syndrome awareness ribbon

October is Down Syndrome Awareness Month.  During this month my goal is to shine a light on individuals with Down syndrome, by celebrating abilities, spreading awareness and advocating for acceptance and inclusion.  I am lucky enough to celebrate and be an advocate everyday, with my son Nick.  He is 24 years old and has a diagnosis of Down syndrome and autism.

My son, Nick vacationing in the Florida Keys 🙂

Nick Key West

My work and writing has been centered around promoting better understanding of individuals with Down syndrome and autism.  Understanding and acceptance, with a focus on an individuals abilities (rather than disabilities), will lead to a more inclusive viewpoint in our society.  A society that promotes inclusion, will open up more doors, that lead to better opportunities in school, work and leisure activities in the community.

For more information about Down syndrome click here: https://www.ndss.org/about-down-syndrome/down-syndrome-facts/

Please use and encourage person first language.  Down syndrome doesn’t define the individual.  An individual is born with Down syndrome, they are NOT Down syndrome, or Down’s.  We are trying hard to break these barriers and stereotypes and eliminate the use of these and the R-word.  I wouldn’t change my son with Down syndrome for the world.  But I want to change the world for him, and other individuals who have Down syndrome, like my 9 month old great-nephew, Gannon.  This journey raising my son, has not been easy, but it has changed me for the better!  I am one of the #lucky few! 🙂

Down syndrome tour guide

I look forward to sharing and celebrating the remarkable abilities and accomplishments of individuals with Down syndrome this month.  Be sure and follow our social media sites below to capture these inspiring stories.  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 Adult Day Programs for Special Needs, Autism, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

DS-ASD, Nick’s Spring Update

DS-ASD, Nick’s Spring Update

spring flowers

The trees and flowers are budding and blooming here in the Chicago area.  A long overdue, and highly anticipated spring has finally arrived.  Here is what my son, Nick has been up to this spring.  Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.

Nick attends an adult day program which provides enrichment activities both in-house and out in the community.  The structured curriculum and schedule of this program serves Nick, and his fellow clients well.  Community trips to local parks, restaurants, shopping for the weekly cooking segment are integrated throughout the week.  They have also been doing gardening and working on craft projects that will be sold next week, at the Garden and Craft Sale.  Nick enjoys going to this program, and looks forward to going to it daily.

Outside of his adult day program, Nick likes to go to the movies, parks, library and out to eat with his personal support/respite caregivers.

It’s the middle of April and a jacket is still required……

nick swing neighborhood

Oh happy day 🙂

Nick taco bell outside

For the past couple of years, Nick and his respite caregiver Jodi, have joined up with Christopher and his caregiver for date night, each Thursday.  These two guys have a lot of laughs together at the library, and going out to eat afterwards.  His buddy is moving out-of-state, so it was a bittersweet final date night for the two of them…….

Nick and Christopher saying goodbye, it’s the end of an era…..

nick and christopher

March is Down Syndrome Awareness Month, and 3/21 also being World Down Syndrome Day.  Nick and I spent this month doing advocacy and awareness about Down syndrome.  One campaign we were a part of was with Noah’s Dad, #provethemwrong which highlights the many awesome things that people with Down syndrome are doing in the world.  To follow Noah’s Dad and #provethemwrong click here for more information: http://noahsdad.com/prove-them-wrong-tee-shirt/

Nick Prove Them Wrong

Our family also supports The National Association for Down Syndrome (NADS) which is based in Chicago.  We are sponsors for the annual NADS Bowl-a-thon fundraiser.  Nick had a blast at the event :)……

Nick NADS bowlathon

Over the past weekend, we made a trip to Ohio to celebrate Nick’s cousin’s graduation from Bowling Green State University.  Nick is highly social, and loves spending time with his cousins, aunt, uncle, and grandparents.  Before the early 9am graduation ceremony began, in the crowded Stroh Center, Nick did his part to test a fire alarm cover.  The loud buzzer blared for a few seconds, before his Dad could close it back down.  It was a close call, but at least he didn’t pull the actual fire alarm.  He’s cheetah fast, and as I’ve said before, it’s Nick’s world, the rest of us are just trying to keep up.

Congratulations and elbow bumps to Nick’s cousin, Sam, well done!…….

Nick and Sam Graduation

Relaxing on the deck and enjoying a warm, spring day with his cousin, Anna….

Nick and Anna

Spring is a time of renewal, and taking in the beauty of nature coming back to life after a cold, harsh winter.  It feels so good to get outside and power walk again.  These walks are a time for me, to reflect on life’s blessings.  I feel very fortunate that my son is healthy, happy and enjoys his life as a young adult having Down syndrome and autism.  Yes, there are many challenges, and he certainly keeps us all on our toes.  But the joy and humor that Nick exudes, far outweighs the behavior challenges we incur daily.

It’s almost Mother’s Day, which is the official “green light” to plant flowers and vegetables here in the Chicago area.  I’m ready to fill up the clay pots with some color, on the empty pallet of the deck.  I can’t wait to put the tomato plants into the soil.  Gardening is my way of relaxing, and shaking off daily stress.  It’s so important to carve out time for yourself, and restore what can sometimes be taken away, by the demands of parenting a child with special needs.  Wishing all the moms on the front lines, a very Happy Mother’s Day.   My hope is that you make time to enjoy something on your own, that is fulfilling and relaxing each day.  That’s what is in my noggin this week.

Happy Spring everyone 🙂

~Teresa 

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

Blog #200~World Down Syndrome Day

Blog #200~World Down Syndrome Day

“World Down Syndrome Day is Wednesday, March 21, 2018 and its purpose is to raise awareness around the world of what Down syndrome is and the vital role people with Down syndrome play in our society. The day has been officially observed by the United Nations since 2012 and the date — always on the 21st day of the 3rd month — is meant to highlight the uniqueness of the triplication (trisomy) of the 21st chromosome, which is the cause of Down syndrome.”

World Down-Syndrome-Day

World Down Syndrome Day is an opportunity for all of us to promote awareness, understanding and inclusion.  Lack of knowledge and understanding can prevent people with Down syndrome from being accepted and included in society.  The message is simple, every individual is unique, we all have value, and everyone has the right to live a happy and fulfilling life.  I heard a great quote the other day, “Down syndrome is just another way that humanity presents itself”.  

DSAwarenessMagnet

So, how can we promote awareness, understanding, inclusion and acceptance? 

Three Easy Ways To Promote World Down Syndrome Day:

1. Promote Down syndrome awareness on social media.  Rock your funky socks and T-shirts.  Let’s see them on Facebook, Instagram and Twitter.  Share inspiring, beautiful pictures, stories and videos of individuals with Down syndrome.  Tell us how an individual with Down syndrome has affected your life. Use hashtags, here are a few suggestions-  #wdsd #downsyndrome #321 #abilities #inclusion #funkysocks #downsyndromerocks #PROVETHEMWRONG

Nick Prove Them Wrong

My son Nick (pictured above) is 24 years old, and has Down syndrome and autism.  We’ve joined Noah’s Dad-Down syndrome awareness in their campaign #PROVETHEMWRONG.  More information at http://noahsdad.com/

2. Educate others about Down syndrome and encourage the use of person first language.  This means saying, “a person or individual with Down syndrome”.

Do NOT say:
* “A Down syndrome baby, child or kid.”
* “Down’s baby, child or kid”
* “Down’s”
* “He or she has Downs”

3. Encourage inclusion in your community.  What opportunities are available for meaningful jobs, volunteer work and other contributions for individuals with Down syndrome?  Are there any fundraisers like the Buddy Walk, funky sock campaign or other local DS support group activities, that you could get involved in?  Adults teens and children can volunteer to help with programs like the Special Olympics, Best Buddies peer program, and GiGi’s Playhouse.

Nick volunteering at GiGi’s Playhouse…..

nick-cleaning-gigis

Here’s an amazing business:  Bitty & Beau’s Coffee is more than just a place to grab a cup of coffee – it’s an experience. While the shop is run by people with intellectual and developmental disabilities and the customers love the products, they really come in for the unique customer service experience……..

bitty and beau coffee shop

Promoting awareness on social media, educating others about Down syndrome to use person first language, and finding inclusion opportunities are three great ways you can  support World Down Syndrome Day 3/21/18!  Help others to gain a better understanding, acceptance and inclusion for individuals with Down syndrome.  Let’s look past the diagnosis and see the uniqueness of each individual and their vital role to our society.  I can’t wait to see your posts on social media and rocking those funky socks for WDSD 2018!

We Help Two funky socks available at http://www.wehelptwo.com/ ………

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, 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 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

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“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 🙂