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 Down syndrome, Down Syndrome Awareness

October is Down Syndrome Awareness Month

October is Down syndrome Awareness Month

DS-Awareness-Month

October is Down syndrome Awareness Month.  I’ve had the privilege of raising my son,  for the past 23 years.  Nick has Down syndrome and autism. He has touched my life, and those of so many others along the way.

nick-senior-alarm-pic

Down syndrome awareness is about promoting 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 something about Down syndrome on social media

*Send updates, pictures and tell your story to your family doctor and OB-gyn.

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

*Many local DS support groups have public speakers who can talk to 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.

Down syndrome journey

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

~Teresa 🙂

 

 

 

 

 

 

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 Uncategorized

Blog #158~Down Syndrome Awareness Month

Blog #158~Down Syndrome Awareness Month

Down syndrome awareness month

October is Down Syndrome Awareness Month.   This month, I want to share some information and educate the public about Down syndrome.

Facts about Down syndrome

Courtesy of The 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% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
*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% of children with Down syndrome are born to women under 35 years of age.
*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 in 1983 to 60 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.

Down syndrome journey

Since this is about awareness, it is important to educate people on the appropriate language that should be used. People with Down syndrome should always be referred to as people first.

Do NOT say:

*”A Down syndrome baby or child.”

*”Down’s baby or child”

*”Down’s”

*”He has Downs”

Instead say: “A child with Down syndrome”.  Finally it should be said “Down” and NOT Down’s.” Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.  Global Down Syndrome.org mentions that,  “Originally, it was referred to as his syndrome – Down’s Syndrome.  In the UK, Europe and many other countries, the correct term still remains “Down’s Syndrome.” In the U.S., it was changed to Down syndrome (drop the possessive) as to emphasize that it was not Dr. Down who had the syndrome nor was it his”.

My son Nick is 22 years old, and has Down syndrome and autism.  I’ve heard all of these incorrect phrases over the years. Please help me educate the public on the proper way to refer to a person with Down syndrome.  Thank you for reading and spreading awareness about Down syndrome.  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

scan0016

@Down Syndrome With A Slice Of Autism:

Facebook  pintrest

#nickdsautism:

instagram-logo

@tjunnerstall: Twitter

DSAwarenessMagnet

 

Posted in Down syndrome, Health Issues and Special Needs Child, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #127~So, Your Baby has Down syndrome

Blog #127~So, Your Baby has Down syndrome        

In October everything turns pink for Breast Cancer Awareness Month. But did you know it’s also Down Syndrome Awareness Month?

Twenty-one years ago I gave birth to my son Nick. The doctor detected several markers that he might have Down syndrome.  The next day, a hospital social worker handed me two brochures about Down syndrome. That is was what I had to work off of.

Here are the facts about Down syndrome courtesy of The National Down Syndrome Society, www.ndss.org:

  • 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.

I think back on that 33-year-old mom who was unsure of her future. What advice would I give her today?

Down syndrome journey

First, I would say that everything is going to be OK. The path will be different and move slower. But your child will work through the low muscle tone with the help of early intervention programs. The benchmarks like sitting up, crawling, walking and eating solid food will take longer to reach. Try to be patient and rest assured that your child will hit them.

Nick, age one….

scan0009

The next thing I would tell her is that there will be angels that light a path along the way. Embrace them and incorporate what you learn at home. The speech therapists will teach him how to blow bubbles, work on lip closure, feeding and to use sign language along with songs to communicate. The occupational and physical therapists will guide him in fine and gross motor skills. The teachers will hold the lantern and illuminate his mind. The social support groups will be your shoulders to lean on.

scan0016

Finally, I would share this message. Your baby was born with Down syndrome, but they are a person first. People with Down syndrome experience the same emotions that you and I do. Your life will change for the better as you savor the sweet victories. They will steal your heart and touch others in ways you can’t imagine. Your child will bring a unique perspective of seeing the best of the human spirit.

Nick in Sox hat

This is my advice to the young mother who just gave birth to a beautiful baby, who just happens to have Down syndrome. That’s what is in my noggin this week. 🙂

~Teresa

Posted in Uncategorized

October is Down syndrome Awareness Month

October is Down syndrome Awareness Month

Down syndrome awareness month

It’s hard to believe that September is winding down.  October starts this week and I want to kick it off by promoting Down syndrome Awareness Month.  How much do you know about Down syndrome?  Click on this week’s link to learn more about it, including facts and links promoting Down syndrome:

https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

The page will then show nothing found (something is wonky here this week).  Then type in:  “Blog #26 Down syndrome Awareness Month in the search box.  It should pop up. Sorry about the extra step.

Thank you for reading and sharing Nick’s world!  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Down syndrome

Blog #26~ Down Syndrome Awareness Month!

Down syndrome awareness month

Blog #26~ October is Down Syndrome Awareness Month!

Each October everything turns pink for breast cancer awareness.  Even the NFL players and referees wear pink.  Everything is illuminated including the Tower of London, The White House, Eiffel Tower, Empire State Building and even Rio’s iconic Christ the Redeemer statue is glowing pink.

But did you know that October is also Down syndrome Awareness Month? How much do you know about Down syndrome? Here are a few facts about Down syndrome courtesy of The 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% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
  • 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% of children with Down syndrome are born to women under 35 years of age.
  • 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 in 1983 to 60 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.

My boys, Hank and Nick 🙂

Hank Nick 001 (2)

Since this is about awareness, it is important to educate people on the appropriate language that should be used.  People with Down syndrome should always be referred to as people first. Do not say- “a Down syndrome child.” Instead say, “a child with Down syndrome.”  Here are three more improper phrases to avoid are “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”  Finally it should be said “Down” and not “Down’s.”  Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.

Down syndrome keep calm

Here are some great links promoting Down syndrome:

* NDSS Buddy Walks take place all over the country raising over 11 million to support local and national programs.

*Times Square jumbotron kicks off with a special Down syndrome awareness video.  Their website is at www.ndss.org.

*The National Down Syndrome Congress (NDSC) sponsors their campaign called, “More Alike than Different.”  Check out their website at www.ndsccenter.org.

*Here in the Chicagoland area, the National Association for Down Syndrome (NADS) provides bookmarks and posters that can be distributed in the community to schools, libraries, book stores and businesses.  This group is based in Chicago.  For more information go to  www.nads.org.

*GiGi’s Playhouse is another wonderful group that started in the suburbs of Chicago and has grown to expand around the country. GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.  They have a wonderful calendar and notecards available for purchase. More information is at www.gigisplayhouse.org.

*One of my favorite websites is www.noahsdad.com.  Noah is the cutest thing and his dad does a superior job of presenting his son in a positive light.

I hope this week provided some further insight and information about Down syndrome.  That’s what is in my noggin this week.  Most of us have been affected with or by breast cancer in some way.  I hope this month raises awareness and more funding for breast cancer and Down syndrome.  I would love to hear how a person with Down syndrome has touched your life.

My son, Nick rocks that extra chromosome! 🙂

best buddies dance

~Teresa 🙂