Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs, Resources for Special Needs

Winter 2017 Update

Winter 2017 Update

I hesitate to call this a “winter” update, as we’ve been enjoying a string of mild, 65 degree days here in the Chicago area.

Hot tub in February, no jacket required…..

nick-hot-tub-feb

My son Nick, just celebrated his 23rd birthday a few weeks ago.  He has Down syndrome and autism.  He has been going to an adult day program, for the past year.  The program offers a variety of enriching activities, which he completely enjoys.  In addition, Nick does many community outings with his awesome respite caregivers, Jodi and Lara.  They go out to eat at a variety of restaurants, to the movies, library, and parks.  Nick loves being out and about, in the community.

We have been very active in our local Down syndrome support group, The National Association for Down Syndrome (NADS).  Even before we relocated to the Chicago area, NADS was instrumental in providing information and support for us.  They have been a vital resource for our family, and many others in the Chicagoland area.  To find our more information about The National Association for Down Syndrome (NADS), click here: http://www.nads.org.

nads-logo

The NADS Bowl-A-Thon event, is coming up on March 5th.  This event, is the single largest fundraiser for NADS.  This year, Nick has a fundraising page for his bowling team. You can click on the link to support Nick’s Elbow Bumpers Team and NADS:

http://www.firstgiving.com/fundraiser/nick-unnerstall/nads-32nd-annual-bowl-a-thon 

Big Guy’s signature elbow bump with his brother, Hank…..

nick-and-bro-x-mas

One more update, I want to briefly mention is coming up on March 21st, which is World Down Syndrome Day. 

world-down-syndrome-day

“World Down Syndrome Day is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

One of the trademarks of World Down Syndrome Day, is rocking your socks!  This year I am working on partnership to raise money and awareness for Down syndrome, where you can purchase some funky socks.  I’ll be posting more information about this next week, on this site and the social media sites listed below. Stay tuned……

funky-socks

The Down syndrome community has supported Nick and our family, so much over the past 23 years.  These fundraising efforts are the least that we can do to give back, and help other families going down the same path. Having a community of support has helped us to navigate Nick’s world. Now at age 23, Nick is a very happy, young man who enjoys life.  That certainly brings a smile to my face. 🙂

nick-smiling

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

~Teresa

Follow Nick:

Down Syndrome With A Slice Of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

Posted in Down syndrome

Blog #160~Princess Diana’s Goddaughter

Blog #160~ Princess Diana’s Goddaughter

October is Down Syndrome Awareness Month.  I’ve been highlighting stories of inspiration and information about Down syndrome.  I ran across an article in People Magazine the other day about Princess Diana’s goddaughter.  Her close friend, Rosa Monckton gave birth to a daughter with Down syndrome back in 1995.  Princess Diana was the person who provided the ultimate support.

Princess Diana and Rosa’s daughter Domenica

diana-and-domenica

It was Diana who helped Rosa and her family, navigate their new path of having a baby with Down syndrome.  Diana introduced her to doctors, and came with her to all the appointments.  Diana told Rosa, You just have to believe in her, love her, and I be there with you every step of the way”. 

In the People magazine interview, Rosa shared this about Diana, “She  already had that vision of what  Domencia could be, which I simply couldn’t see”.  Fast forward to present, the vision is reality.  Domenica is thriving at age 21, who attended Chickenshed, a performing arts theatre in London. Diana had recommended would be a good fit, years ago to her.  In addition, Rosa set up “Team Domenica”, a charity that provides continuing education for young adults with learning disabilities to help them find jobs.

Rosa Monckton and daughter Domenica

rosa-and-domenica

This fall, “Team Domenica” opened a seaside café in Brighton, England where Domenica and other peers with special needs, are working. The jobs provide a variety of skill sets, so that every person can reach their full potential.  Domenica is trying everything by working various jobs at the café.  Rosa is certain that Princess Diana would be very proud of what she has achieved.

It didn’t surprise me that even after Princess Diana passed away in 1997 , she continue to inspire her friend, and so many others. I’m certain that Diana is up in heaven smiling down on all of us.  That’s what is in my noggin this week. Thank you People Magazine for publishing this article, (October 24, 2016 issue), and helping to support Down syndrome awareness!

~Teresa

Follow Nick on Facebook & Pinterest @Down Syndrome With A Slice Of Autism

Instgram #nickdsautism

Twitter @tjunnerstall

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #159~Down Syndrome Sibling Stories

Blog #159~Down Syndrome Sibling Stories

October is Down Syndrome Awareness Month.  Beauty Exposed, is a brand new book just published, featuring candid stories of life with siblings who have Down syndrome.

beauty-exposed

Chloe Goulding is the 17 year old author that put this book together in hopes of sharing honest stories to encourage families to be encouraged and to expose the true beauty.  She wanted to tell the stories about her own siblings, Charity and Neko, who both have Down syndrome.  In Chloe’s words, “Rather than seeing their disabilities, I see their possibilities and wish that everyone could see what I see.  The beauty is there, waiting to be exposed.”

I first approached Chloe a couple of years ago, when she was seeking stories by other siblings for her book.  My son, Nick is 22 years old and has Down syndrome and autism.  In Beauty Exposed, there are stories from school age, high school/college and adult siblings.  My older son, Hank’s story is included in this book.

Hank and Nick…..

Hank  Nick 001 (2)

The stories are candid and personal, sometimes making you laugh and others bring tears to your eyes.  The lessons these siblings learned are woven throughout the book.  Chloe learned to see the possibilities, enjoy the small things, not to give up (as people with Down syndrome have to work 10x harder to walk, ride a bike or talk).

In Beauty Exposed, you get a glimpse into what it’s really like to be a sibling of an individual with Down syndrome.  It can be challenging and yes, sometimes embarrassing. I couldn’t help but laugh at some of the similar stories that reminding me of my son, Nick.  He’s not the only one that is sneaky, clever and charming.  One sister wrote about her brother getting into her room and breaking multitudes of perfume bottles, time and again.  “The little cutie can do damage like a tornado.”  Another brother writes, “He makes our family laugh all the time.  He’s got some great dance moves, and he can sing aloud.  He’s also the king of funny faces, and KNOWS how to charm an audience. 

One of my favorite stories was about Frankie. His brother writes about his own birthday, as it is time to blow out his candles.  “And before I can take a breath, half of my birthday candles are blown out.  For the 14th year in a row.  But it’s okay, because his smile is better than any wish I could ever make.” 

While many stories are familiar with my own son, each contributor brings their own unique perspective.  They have struggled and defended their siblings with Down syndrome.  Yet, at the same time have they’ve experience empathy and learned what love is in a deeper sense.  These stories show that without their sibling with Down syndrome, they would be a very different person.

Reading these stories, I got a sense of just that.  Each sibling learned valuable lessons much earlier in life having been touched by Down syndrome.  Just some of the lessons included that of acceptance, not taking things for granted, perseverance, forgiveness, compassion, patience and most of all, love.  One story written by an Archbishop speaks to this, “Giving and receiving are intertwined.  We never do one exclusively.  In the case of my brother, it is not a cliché to say I have received much more than I have given.”  That is the common thread in Beauty Exposed, and having the extraordinary opportunity to know someone with Down syndrome.

Thank you Chloe Goulding, for exposing the beauty that is Down syndrome. For more visit http://www.BeautyExposedtheBook.com.  The book is available for purchase on Amazon, I’m going to give it 5 stars!  I hope that we can all continue to advocate for those individuals having Down syndrome not only in October, but all year-long.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook/Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

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

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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, Physical Therapy and Special Needs, Speech and Occupational Therapy

My Guest Blog~So Your Baby Has Down Syndrome

My Guest Blog~ So Your Baby Has Down Syndrome

Recently I was contacted by an associate editor at Social Work License Map, a guide to social work licensure that clarifies the steps needed to become a social worker in any state.  This social work site,  also focuses on specific social work advocacy. I am very excited to share that my website, “Down Syndrome With A Slice Of Autism” will be included here.  In addition, I did a guest blog spot which posted live last week.  The guest blog is entitled, “So Your Baby Has Down Syndrome.”  Just click below to view:

http://socialworklicensemap.com/guest-blog-so-your-baby-has-down-syndrome/

October is  Down syndrome Awareness Month and there are so many good stories in the news.  I will continue to post these on the Facebook page for you to enjoy.  Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

DSAwarenessMagnet

 

 

 

Posted in Down syndrome, Resources for Special Needs

Down Syndrome Awareness Month (Re-blog)

 

Down Syndrome Awareness Month!

Photo on 2011-06-12 at 18 01 #4

Nick says yay and thumbs up!  October is Down syndrome Awareness Month.  Here is a blog I did a few years ago that will open your eyes to Down syndrome @ https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

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

~Teresa 🙂

Posted in Down syndrome, Government/Legal Matters Related to Special Needs

Blog #89~ World Down Syndrome Day

Blog #89~ World Down Syndrome Day

The United Nations official recognition of World Down Syndrome Day is March 21st. “Each year the voice of people with Down’s syndrome and those who live and work with them join together to focus attention on what it means to have Down syndrome and how those with the condition play a vital role in communities across the world.”  Click on the site below to view events to raise public awareness to create a single global voice @www.worlddownsyndromeday.org.

WDSD Socks

According to Wikipedia, “Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues. 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.”

trisomy 21

The Secretary-General of the United Nations Ban Ki-moon said on 21 March 2012, “On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

keep calm

World Down syndrome Day.org gives this message on it’s website, “People with Down syndrome face many challenges as children and adults which may prevent them enjoying their basic human rights. Many people often fail to understand that people with Down syndrome are people first, who may require additional support, but should be recognised by society on an equal basis with others, without discrimination on the basis of disability.”

Big Guy, Nick 🙂

IMG01

My son Nick, is a young adult who has Down syndrome.  He has so much to offer and has brought so much joy to the world.  He’s made me a better person in the process.  If you would like more specific information on Down syndrome click here @https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

Please help me spread the word about World Down Syndrome this week on social media.  That’s what is in my noggin this week. 🙂

~Teresa