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

Blog #246~ DS-ASD at the NDSC Convention 2022

Blog #246~DS-ASD at the NDSC Convention 2022

Being a parent of a child with a dual diagnosis of Down syndrome and autism (DS-ASD), can often feel isolating. The complex needs of speech deficits, sensory and behavior concerns related to co-occurring DS-ASD make parents feel like they don’t fit into the Down syndrome or autism support groups. For the longest time I avoided going to the Down syndrome functions and conferences for this very reason. I know that other families have felt the same about not fitting into the DS groups. It is a lonely feeling. My son Nick is 28 years old and has DS-ASD. What I have since learned is that you have to align yourself with like minded individuals who truly understand this unique journey. In addition, it’s important to process the secondary diagnosis of autism with Down syndrome and get to a place of acceptance in your own time. While this path is different, there is both help and hope now available compared to 15+ years ago when Nick got the secondary diagnosis.

There was much to celebrate at the National Down Syndrome Congress 50th Annual Convention (NDSC) held in New Orleans last month in person. This week, I want to share this experience and why it was so important for DS-ASD families and those wanting to learn more about a dual diagnosis.

Since the publication of my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism in 2020, I have been presenting information about my journey with Nick and providing strategies, tools and interventions to support individuals with DS-ASD.

Click here to order:  https://amzn.to/2W3Un6X

The Deep Dive presentation was a comprehensive presentation: Down Syndrome and Autism Spectrum Disorder Clinical Features and Treatment and Intervention Strategies, was led by physician Dr. Nicole Baumer, psychologist Dr. Lina Patel and myself.

This presentation provided valuable information on how to tease out signs and symptoms of what autism looks like in individuals with Down syndrome. In addition, we offered many strategies and interventions to support communication, behavior and sensory needs associated with co-occurring DS-ASD.

The NDSC exhibit hall was a high energy whirlwind of agencies and rock stars of the Down syndrome world. The Down Syndrome-Autism Connection booth was busy with our staff and board of directors answering questions, listening to stories and connecting with others wanting to know more about a dual diagnosis.

The Down Syndrome-Autism Connection: A Lifeline for a Lifetime more at http://ds-asd-connection.org/
The Down Syndrome-Autism Connection’s Rock Stars: Executive Director Charlotte Gray and President, Jeanne Doherty fielding questions and networking at the NDSC Exhibit Hall booth.

Some more of the Rock Stars of the Down Syndrome World at NDSC Convention 2022:

Heather Avis author, podcaster and advocate with The Lucky Few more at https://www.heatheravis.com/about
Noah’s Dad and Hope Story Advocates Rick and Abbie Smith more at https://hopestory.org
Advocate and author Tim Harris more at https://www.globaldownsyndrome.org/news-community/quincy-jones-exceptional-advocacy-award-recipients/tim-harris/

Sophia Sanchez, actress, model, author, advocate and influencer more at http://www.sofia-sanchez.com/bio
Trailblazer, advocate and author David Egan more at https://davideganadvocacy.com
GiGi and Nancy Gianni of Gi’Gi’s Playhouse. More at https://www.gigisplayhouse.org/
Ruby’s Rainbow provides scholarships to individuals with DS for higher education. More at https://rubysrainbow.org/about/

The Down Syndrome-Autism Connection hosted a panel discussion, DS-ASD The Real Deal a Parent Panel, which provided a safe space to ask questions, share ideas and strategies. The Down Syndrome-Autism Connection is the gold standard, national organization serving the DS-ASD community since 2007. More at http://ds-asd-connection.org/

The Down Syndrome-Autism Connection Parent Panel at NDSC 2022

The final presentation that I gave was, a DS-ASD 3-21 Toolkit of Strategies which offered practical ideas, take home strategies and ways to support individuals with a dual diagnosis. These included the three areas impacted by autism in Down syndrome including communication, behavior and sensory needs. One example of a strategy that I suggested, is to teach your child the concept of time and having to wait. How do you teach this?

*Use visual supports like PECS icons/or a clock picture and non-verbal gesture of pointing to your wrist, indicating a wrist watch.

*Pair this with a timer app like Countdown Timer or Time Timer.

* Always introduce this concept by teaching first in low stress environments and build from there. Ex/ Low stress: Waiting for shower water to warm up: “Good waiting” and point to wrist. Then, build to higher stress: Child is hungry and there is extra long line at Taco Bell. You see that they are impatient and showing stress. Point to wrist and/or set the timer app, reinforce “Good listening Nick thank you for waiting, yay”!

This is just one of many ideas from my DS-ASD 3-21 toolkit. 🙂

Teresa Unnerstall, author, speaker and advocate at NDSC presentation

I would like to commend the National Down Syndrome Congress for including these important DS-ASD presentations at the NDSC convention. It is so critical for families and professionals to see what autism looks like in Down syndrome and how to effectively provide interventions, strategies and support for the additional challenges for DS-ASD individuals and their families.

Thank you NDSC for allowing me the opportunity to share information, help and inspire others who are on this journey. The DS-ASD community appreciates having a representation at the NDSC convention and in your organization.

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

~Teresa

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

Blog #240~ October is Down Syndrome Awareness Month

Blog #240~October is Down Syndrome Awareness Month

down-syndrome-awareness-month

October is Down Syndrome Awareness Month. My son, Nick is 27 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, my mission is to educate others to better understand more about Down syndrome and autism. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome in all aspects of our society.

Click here to get the facts about Down syndrome: http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

Here’s how YOU can promote Down syndrome awareness and acceptance:

🙂 Post information and stories about individuals with Down syndrome on your social media platforms. You can follow many inspiring individuals on Facebook and Instagram like Nick at #Down Syndrome with a Slice of Autism. Here are a few of my favorites: #noahsdaddotcom #calebs_crew #brittanysbaskets #chrisnikic #dsdn #chucklesandmeatloaf #nothingdownaboutit #sean_from_born_this_way #troymadeit #abigail_the_advocate #theluckyfew #aceismyfriend

🙂 If you are a parent of a child with Down syndrome, send updates, pictures and tell your story to your family doctor and OB/GYN. Consider becoming a Hope Advocate-You will get a custom hope kit to distribute to your OB/GYN and family doctor. More information https://hopestory.org/sign-up/

🙂 Your local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

🙂 Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.

🙂 Support or volunteer for local fundraisers like the Buddy Walk in your community https://www.ndss.org/play/national-buddy-walk-program/ .

🙂 The Down Syndrome-Autism Connection is the gold standard organization supporting DS-ASD families @ http://www.ds-asd-connection.org/. I am looking for 21 people to donate just $21 for the 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. Click here to donate @ https://givebutter.com/l6BUl8/teresaunnerstall

🙂 Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

🙂 Use and promote “person first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

🙂 My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is helping so many readers understand both Down syndrome and a co-occurring Down syndrome and autism (DS-ASD). It’s available on Amazon, plus there are share buttons you can utilize for social media to help spread awareness. Order and donate a copy to your local library @ https://amzn.to/2W3Un6X 

This image has an empty alt attribute; its file name is a-new-course-book-cover-multiple-books.jpg
Order your copy today at https://amzn.to/2W3Un6X

Thank you for supporting and sharing all about Down syndrome awareness this month! That’s what is in my noggin this week.

~Teresa 🙂

Follow us 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

Blog #233~Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. My son, Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, I strive to educate others to better understand more about Down syndrome and autism. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome.

FACTS about Down syndrome from National Down Syndrome Society (NDSS):

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.

*Down syndrome occurs in people of all races and economic levels.

*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.

*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.

*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.

*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

*Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

More information @ http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

Here are a few simple ways to promote Down syndrome awareness:

*Post information and stories about individuals with Down syndrome on your social media platforms.

*If you are a parent of a child with Down syndrome, send updates, pictures and tell your story to your family doctor and OB/GYN. Consider becoming a Hope Advocate- where you will get a custom hope kit to distribute to your OB/GYN and family doctor. More information @ https://hopestory.org/sign-up/

*Many local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

*Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.

*Support or volunteer for local fundraisers like the Buddy Walk in your community @ https://www.ndss.org/play/national-buddy-walk-program/ . This month The Down Syndrome-Autism Connection is doing a 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. I will be posting more about this on social media. Find out more about this awesome support group @ http://www.ds-asd-connection.org/

*Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

*Always use and promote “people first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first.  Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

down-syndrome-awareness-month

My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is helping so many readers understand both Down syndrome and a co-occurring Down syndrome and autism (DS-ASD). It’s available on Amazon, plus there are share buttons you can utilize for social media to help spread awareness. Order and share @ https://amzn.to/2W3Un6X You can also order my book on other platforms and read chapter one for FREE @ http://www.teresaunnerstall.com. I appreciate the 70+ awesome five star Amazon reviews. Your support and sharing A New Course on your social media sites is spreading great awareness and understanding. I will be doing some more giveaways this month for everyone who shares my book on social media!

Thank you for supporting Down syndrome awareness this month! That’s what is in my noggin this week.

~Teresa 🙂

Follow us 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 Month

Down Syndrome Awareness Month

Down syndrome awareness ribbon

October is Down Syndrome Awareness Month. My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism. As a parent and advocate, I strive to educate others to better understand these conditions. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome.

FACTS about Down syndrome from National Down Syndrome Society (NDSS):

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.

*Down syndrome occurs in people of all races and economic levels.

*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.

*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.

*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.

*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

*Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

More information @http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

NDSS_logo

Here are a few simple ways to promote Down syndrome awareness:

*Post information and stories about individuals with Down syndrome on social media.

*Parents of a child with Down syndrome, can send updates, pictures and tell your story to your family doctor and OB/GYN. Consider becoming a Hope Advocate- where you will get a custom hope kit to distribute to your OB/GYN and family doctor. More information @https://hopestory.org/sign-up/

*Many local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

*Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.

*Support or volunteer for local fundraisers like the Buddy Walk in your community @http://www.ndss.org/buddy-walk/

*Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

*Always use and promote “people first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first.  Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

down-syndrome-awareness-month

Thank you for supporting Down syndrome awareness this month! That’s what is in my noggin this week.

~Teresa 🙂

Follow us on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Resources for Special Needs

Blog #222~Dear Doctor,A Down Syndrome Diagnosis is a Hope Story

Blog #222~Dear Doctor, A Down Syndrome Diagnosis, is a Hope Story

What is the right way for a doctor to deliver the news that your baby has Down syndrome either pre-natal or at birth?  Over the weekend, I received a link from Nothing Down, called Dear Doctor http://www.nothingdown.org/ The short film link, interviewed parents who shared their experiences with their doctor.  The delivery of the news of a Down syndrome diagnosis was often cold, stoic, and grim.  In some cases, the doctors told the parents what their child couldn’t do, while others were offered the option to terminate the pregnancy.  So how should a doctor deliver the news to parents that their baby has Down syndrome? Educating medical professionals, communities, and advocating for inclusion and acceptance, are some of the goals during the month of October, which is Down Syndrome Awareness Month.  The more you understand Down syndrome, the less fear you will have about the navigating the challenges associated with the diagnosis.

DS-Awareness-Month

I’m excited to share a new program that is going to change the way many medical professionals will deliver a pre-natal or birth diagnosis of Down syndrome.  It’s called Hope Story!

Hope Story’s Mission:

“Hope Story exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.”  

Hope Story Helps 3 Main Groups:

*Parents whose child received  a diagnosis of Down syndrome.

*Parents who have a child with a diagnosis of Down syndrome.

*Medical Professionals

Hope Story will be providing kits to advocates who will partner with medical professionals.  Hope Advocates will inform, educate and allow doctors to get to know someone with Down syndrome on a personal level.  Tools in the Hope kit contain valuable information on how to deliver a diagnosis of Down syndrome, and a preferred language guide to help talk about Down syndrome with dignity, respect and hope.  In addition, the Hope booklet addresses concerns a new parent may have about Down syndrome.  Other tools include welcome letters, announcements, business card and  training videos for Hope advocates.

For more information on Hope Story click here:   @https://hopestory.org/about/

I’m looking forward to being an advocate for Hope Story, and the opportunity to work with medical professionals on delivering a positive pre-natal or birth diagnosis of Down syndrome.  Giving hope to other families who have a child with Down syndrome, has been the fuel for my writing for many years.   One thing I wish someone would have told me 24 years ago, when my son, Nick was born is this:

DD are like comas

Babies and children with Down syndrome have to work harder with physical, occupational and speech therapy to hit developmental milestones, and yes it may take longer, but they will and it hit them, and it will be grand!

My son Nick, age 24 🙂

Nick Key West

As we close to the end of October and Down Syndrome Awareness Month, I feel optimistic about the future of  individuals with Down syndrome.  We are moving beyond awareness, to acceptance and inclusion in society.  The future looks much brighter, with more opportunities for individuals with Down syndrome.  I’ve highlighted many success stories all month in my blogs, and social media listed below.  Education and understanding about Down syndrome is the key, and Hope Story is taking charge to help medical professionals and parents.  When you have knowledge and hope, the fear subsides.

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

~Teresa

Follow Nick and view more about Hope Story and the Dear Doctor film on social media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall