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

Blog #181~Iceland and Down syndrome

Blog #181~Iceland and Down syndrome

Last week CBS News ran a story about Down syndrome in Iceland. The CBS report opens like this:
“With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.”

cbsn-oa-agusta

“On 14 August 2017, CBS News ran a segment for their program “CBSN: On Assignment” in which correspondent Elaine Quijano traveled to Iceland to report on that country’s disappearing incidence of Down syndrome. Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.”

To view the story click here:
https://www.cbsnews.com/news/down-syndrome-iceland/

I’m going to throw my two cents in about this news story. This week’s blog is not a debate about a moral decision of whether to choose to have a baby with Down syndrome. It’s not my place to comment if someone decides to terminate a pregnancy for whatever reason.  I can only speak from own experience of having a child with Down syndrome. My son Nick is 23 years old and has Down syndrome and autism.

There are 3 comments that I would like to make regarding this news story:

*1. Expectant parents should first do their research first and get the facts. Doctors often know little about Down syndrome beyond their own medical experience. The delivery of news about the possibility of a baby having Down syndrome is often delivered grimly and with pity. This was the case in my son. I would like to see the medical community and society to become more educated on Down syndrome. When you know the facts, you can make an informed decision that is not based on fear.

Here are a few good places to get the facts about Down syndrome:
http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/
http://www.ndsccenter.org/new-and-expectant-parents/
*2. Down syndrome in and of itself, is nothing to fear. Yes, there are health issues associated with Down syndrome. Click here to view: http://www.ndss.org/Resources/Health-Care/Associated-Conditions/

A baby with Down syndrome may take a little longer to reach developmental milestones. But, with early intervention with physical, occupational and speech therapy can guide a baby/child with Down syndrome to hit those marks.  Sometimes, we fear what we don’t know or understand.  When you get educated about the facts, it will help to reduce the fear.

*3. Society needs to see more of what Down syndrome looks like. Persons with Down syndrome are people first! “The Emmy winning A&E show, 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.”  I wish the whole world could have access to this great show! Click here for more information: http://www.aetv.com/shows/born-this-way

btway

Another excellent site I highly recommend is Noah’s Dad!  I’ve had the extreme pleasure of following Noah’s Dad and his journey with his son, who in entering first grade this year. He gives us a view of how full, and rich their lives are having Noah in it. You can find Noah’s Dad-Down Syndrome Awareness on Facebook and at http://noahsdad.com/

You can also follow my son, Nick on Facebook and Pinterest @Down Syndrome With A Slice of Autism, Instagram @nickdsautism and Twitter #tjunnerstall

Nick scuba diving in the Diveheart program……

Diveheart 2013 336

Down syndrome is nothing to be feared once you know the facts, and see what the lives of these wonderful individuals are like. It has been a true privilege being Nick’s mom. He has taught me more about life, and made me a much better person in the process. I couldn’t imagine a world without people like Nick and others, who have Down syndrome.  I’m 100% sure that anyone who has been touched by Nick, would say the same.

scan0016

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

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #156~Is Inclusion For Your Child?

Blog #156~Is Inclusion For Your Child?

Are you raising or involved with educating a child with special needs within an inclusion setting?  Perhaps you are considering  an inclusion classroom for your child.  If so, then THIS is the book you need to read:

whos-the-slow-learner

Who’s The Slow Learner? A Chronicle of Inclusion & Exclusion, written by Sandra Assimotos McElwee (Outskirts Press) is a great book and and resource on inclusion.   Her son Sean McElwee was born with Down syndrome.  Sean is now 22 years old and is one of the star cast members of the Emmy Award Winning series, Born This Way on A&E.  

Her goal for writing this book was to educate and inspire, while chronicling her son’s education experiences.  In Sandra’s words, “This is not a ‘How-to’ book, but a ‘How we did it’ book.”

What is inclusion?

Inclusion is a term which expresses commitment to educate each child, to the maximum extent appropriate, in the school and classroom he or she would otherwise attend.  It involves brining the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students).  Proponents of inclusion generally favor newer forms of education service delivery.

Full Inclusion means that all students, regardless of handicapping condition of severity, will be in a regular classroom/program full time.  All services must be taken to the child in that setting.  

(From Sandra’s book this information was taken from the Wisconsin Educational Council’s Website)

Inclusion not only benefits the special education student, but also the regular education students in class.  It can be highly successful with the right supports, accommodations, modifications and supportive school staff.  From my own experience, I found this to be the case with my son Nick, who is also 22 years old and has Down syndrome and autism.

Sandra offers a wealth of information in this book.  Each chapter begins with all Sean’s IEP goals for that school year.  The book is loaded with great ideas on how to navigate the school system and how/when to reach out for outside help using consultants to advocate for your child.  This was the case when Sean transitioned into intermediate school, where they determined a need to put a behavior support plan in the IEP.  Sandra provides this full behavior support plan in the book as well, which is very beneficial.  Getting outside support for communication and behavior also helped greatly during the adolescent years with my son, Nick. Keeping in the loop with staff and volunteering in the school and classroom is another great way to keep up with how your child is doing in school.

There are so many valuable lessons that Sandra learned and shares about her son’s educational journey.  Many of which I can relate to having gone through this with my son, Nick.  You are not always going to have a school team or some of the members supporting inclusion for your child.  Sometimes it’s the school staff that are the slow learners.  In this book, you can see how Sandra had to advocate even harder during the intermediate and high school years. Unfortunately this was not always a success. But these actions set the foundation, to make it easier for other families to follow.

The book not only contains a wealth of education information, but many funny and inspiring stories on how Sean touched so many lives.  In one story, Sandra gets out of the shower and noticed the unmistakable odor of popcorn being microwaved.  She fully expected to smell a burnt popcorn next, so she hustled quickly downstairs.  To her surprise, Sean had just opened a perfectly cooked bag of popcorn.  She asked Sean what number he pushed?  Sean looked at her like she was crazy, and pointed to the control panel and said “popcorn”.  It turned out that the all the site words Sean had been learning in first grade were working. Sandra didn’t even know there was a popcorn button on the panel.  In this case she, was the slow learner.

Who’s The Slow Learner? is not just for parents, but a great resource for educators, future regular & special education teachers, school administrators and advocates.  This is the first book that chronicles a student with special education needs from pre-school to high school graduation.  It’s a very instructive book that shows a mother’s determination to advocate for the best available resources in not always a cooperative educational system.

I’m sure this book will benefit many considering inclusion for their child with special needs, and the education team that will be providing for them. That’s what is in my noggin this week.

~Teresa

Catch Sean and his family on the Emmy Winning Series, A&E’s Born This Way, Tuesday nights at 9pm (8pm Central)!

Trump_Key_Art_Premiere_FIN.indd

Follow Nick:

scan0016

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

Instagram: #nickdsautism

Twitter: @tjunnerstall

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Uncategorized

Blog #149~Vacation/Staycation

Blog #149~Vacation/Staycation

How’s your summer going?  Nick had a blast on vacation in Texas, and a staycation here with his cousins. My son Nick is 22 years old and has Down syndrome and autism. We flew down to Texas late June, for a family reunion in the Hill Country.  I managed to knock a few things off my Texas bucket list including Tex-Mex food, tubing, swimming and authentic BBQ.

Nick enjoying the pool with his cousins, Jake and Jenna….

Nick Hill Country pool

A plate of Texas heaven….

BBQ

It was great to see extended family, share laughs, stories, meals, elbow bumps, and get those awesome Overbey family hugs!  Thanks Laura and Scott for hosting a wonderful event.

Texas sunset

We enjoyed a nice 4th of July, and Nick certainly got into the patriotic spirit. I don’t know where he comes up with these things……

Nick flags

Following the 4th of July, my niece and nephew came up for a week.  We had a lot of fun taking them out and spoiling them. They knocked a few things off their Chicago bucket list:

* Chicago White Sox game

*Taste of Chicago

*Millennium Park “The Bean”

bean

* Giordano’s deep dish pizza

giordanos01

*Portillo’s Italian Beef

*Blain’s Farm and Fleet (not sure that was on the list, but a good laugh between me and Jenna)

Thank you to our respite workers, (Jodi, Kelsey and Lara) for taking Nick out during our staycation. It was fun enjoying Chicago with the kids, and just hanging out (and being the cool aunt).

Elbow Bumps….

Nick and Jenna

So, that’s our summer thus far.  On another note, I’m excited to share a great opportunity with you.  Recently I was approached to be in a partnership with A&E’s hit show, Born This Way!  This series features young adults who have Down syndrome showing everyone the possibilities.  I got an exclusive interview you won’t want to miss. Look for the blog post later this week.  Check the social media sites below  for more information, including a look at the trailer.  Let’s get the word out, and share this on your social media as well.

A&E’s Born This Way premieres next Tuesday, July 26th at 10/9c!

BTW FB creative.jpg

What a great summer, it’s been.  See you in a few days with my exclusive Born This Way interview! That’s what is in my noggin this week.

~Teresa

Follow Nick:

scan0016

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

pintrest@Down Syndrome With A Slice Of Autism