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

Halloween Fun

Halloween Fun

This week, I’m sharing some of the fun costumes my son, Nick has worn over the years for Halloween.  Nick is 22, and has Down syndrome and autism.  It’s not always easy for a person with special needs to tolerate costumes, much less masks, face paint, or makeup. The sensory issues can get in the way of going, “all out” for Halloween.  Here is some that I’ve come up with over the year for him:

Referee Nick

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I put a spell on you!

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Spongebob Squarepants

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M&M Nick with his brother Hank

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What a cute slice of pizza he is….

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Army man Nick, and his brother Hank

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Toot Toot, this one was made for Nick!

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Pump, pump it up Nick!

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Yee Haw! My cute, little cowboys….

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Yo, what up Nick?

Nick gangsta

It’s possible to find, (or come up with), your own costumes for a child with special needs. We’ve had a lot of fun doing this over the years.  Nick and I wish you a safe, and Happy Halloween.  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

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

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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

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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.

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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…..

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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 Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Columbus Day

columbus-day

We are taking a break this week!   There are many topics of Nick’s world, in the archives to explore:

Safety/Wandering

Behavior/ABA

Down syndrome

Dual Diagnosis Down syndrome and autism

Education/IEP’s

Feeding/Hygiene

Government funding and legal issues

Health Issues and Down Syndrome

Special Needs Resources

Special Needs Parenting

Therapies (OT, Speech, and PT)

Recreation/Leisure

Tech/AAC (communication devices)

The Fun Side of Nick

Thank you for reading and sharing Nick’s World!  You can find us on Facebook and Pinterest @Down Syndrome With a Slice of Autism, on Instagram @ #nickdsautism, and Twitter @tjunnerstall.  See you next Monday for a fresh new blog!  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 

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