Tag: Trisomy 21

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

Posted on by Teresa Unnerstall

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….

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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.

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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 Down syndrome, Government/Legal Matters Related to Special Needs, Uncategorized

World Down Syndrome Day

Posted on by Teresa Unnerstall

WORLD DOWN SYNDROME DAY!!!

This Saturday, March 21st is World Down Syndrome Day!

“World Down Syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder (www.worlddownsyndromeday.org)  

Big Guy Nick 🙂

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Help me spread the word on social media.  Click on my blog to find out more about WDSD @https://nickspecialneeds.wordpress.com/2014/03/24/blog-89-world-…n-syndrome-day/

Thank you for reading and sharing this information about World Down Syndrome Day.  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

Posted on by Teresa Unnerstall

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 🙂

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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

Posted in Down syndrome

Blog #26~ Down Syndrome Awareness Month!

Posted on by Teresa Unnerstall

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 🙂

Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting, Speech and Occupational Therapy

Blog #18~ A Cut Above The Rest

Posted on by Teresa Unnerstall

Blog #18~ A Cut Above The Rest

Haircuts are no fun with Nick, period.

I can still remember the first time they started to bother him.  It was right before we moved to California in 1998.  He was around four years old. I took him in on a Sunday morning hoping the churchgoers would be worshipping and the salon would be empty.  We walked in and there was only one lady who sat relaxed in her chair and getting a perm.  I sat him on my lap and as soon as the scissors came out, he began squirming and yelling.  Next thing you know he set off the car remote I had put in my pocket.  I couldn’t get out of the salon quick enough. I slapped a twenty down on the counter and got the hell out of there.  That was one of the last professional haircuts he ever got.

Nick’s first haircut in 1996, this one went well……

Nick the early years. His hair was so soft and silky…..

It got to the point where we decided to get some clippers and just give him a home haircut.  Nick’s new look became the buzz cut.

The older he got, the stronger Nick became. Nick has Down syndrome and autism.  His behaviors became more challenging as he got older. He started putting up a big fight.  In fact, if you ever wondered why his tooth is chipped it was from him flailing his body and hitting his face on the floor during a haircut.  Al and I began to dread them as much as Nick did.  Bribes, oh I mean rewards such as a Sprite and a shower didn’t seem to help either.  He began to pitch even bigger fits and we had no choice but to pin him down.  The worst haircut was sitting on the floor of the bathroom with my legs around him and my arms holding his in a basket hold. We were covered with sweat and his fallen hair felt like needles jabbing at our skin. Nick flailed and then peed all over the floor.  We sat there in a puddle of warm urine and fallen hair sticking to us.  Worst yet, we were only half done.  Picture this,  a buzz cut front in the front and mullet in the back.

As I mentioned earlier the bigger the fight, the more traumatized he became (and the longer it took him to de-escalate).  We would finish these sessions and he would be shaking, red-faced with tears streaming down his cheeks.  It broke my heart. 😦

As Nick got into his teen years, I worried that we were going to have to go to extreme measures.  Then, there was another area of hair removal to be addressed. He was starting to grow facial hair, nooooooooooo!

Now it was already impossible to give him haircuts and clipping his toenails was no walk in the park either.  It’s much easier after being in the hot tub or a long shower so that the nails are a little bit supple.  How could we possibly get a razor to his face.  Luckily I had a good team of teachers and aides in high school who offered both visual supports and tips to tackle this next hurdle.

I have to give a lot of credit to Rob Trefil, Nick’s aide in high school.  He was able to get Nick to tolerate an electric razor and actually get in there at his chin and mustache area.  We found the roller top razor worked much better than the rotary one.  Introduce shaving a little bit at a time.  Then, increase the time with each session and lots of praise.  Having a male to model this helps a lot.

Mr. T rocks…..

Big guy shaving……

Last weekend, we geared up for another haircut session.  I was worried because we had waited too long and his mop was out of control.  It was going to be like cutting the lawn two weeks too late.

Pre-haircut Nick, it’s a bit scrappy? 

To my surprise, Nick did outstanding.  In fact, it was the easiest haircut we had ever given him. He didn’t cry or get too upset at all. Hallelujah 🙂

Post haircut Nick….. *A cut above the rest!

I think a couple of things have happened to tone down the level of anxiety and how he tolerates haircuts.  Puberty has passed along with the severe aggressive meltdowns.  I see a maturity about Nick now that he is a young adult.  As parents, we have learned more about behavior management, and use visuals to guide him through the process.  We also figured out that it’s easier to cut his hair first thing in the morning before being bombarded with sensory overload.  Finally, investing in a good pair of clippers makes the cuts go smoother. Nick even helps some with it.  I am so glad the days of holding him down in a basket hold and shearing him are gone.  That is what’s in my noggin, until next Monday may every day be a good hair day!

~Teresa 🙂

*A cut above the rest…. It is originated from the saying “you and I are cut from the same cloth” (being the fabric of life) and that the cloth, from which you were cut… was or superior quality.

 

Posted in Autism, Fun Side of Nick

Blog #14~ “P.B.” Unnerstall

Posted on by Teresa Unnerstall

Blog #14~ “P.B.” Unnerstall

Yes, that’s right we call him “P.B.” on occasion.  In fact we have a lot of nicknames for Nick depending on what he is up to. As his brother Hank mentioned in Blog #9 when he is having a raging meltdown he referred to as “M.B.” which is code for Monkey Boy.  My Brother Tom always called him “Bics” which stands for “Bull in a China Shop.”  Nick’s Dad refers to him as “Floct,” where he came up with that I have no idea.  Al is always making up random, goofy names for family members.  For instance our niece Courtney is “Courtal Minortal” her brother, Austin is called “Stinny or “The Stinnalator.” On the other side of the family he calls our niece Anna, “Anna Bo-bana” and her brother Sam is “Sam-u-Wela” or “Welatron.” My sister Laura’s kids are Jake aka named “Jakey Wakey” and Jenna also known as “Wenna”   Now that I am writing all these silly nicknames I am starting to wonder about the man.

So back to “P.B.” His formal name is Nicklas James Unnerstall.  Having such a last name we decided on short, strong names for the boys. My thought was  if we went really long on the names they might run out of spots while bubbling in their name on the SAT test. (Well, guess we don’t have to worry about that with Nick after all.)  So we chose the name, Nick.

It goes back to the movie called “A Sure Thing.”  The two main characters (college students) are hitchhiking across country and no one will stop and pick them up.  So, the female character played by Daphne Zuniga (formally of Melrose Place) stuffs a sweater under her shirt to make it look like she is pregnant.  An elder lady taking pity and stops to pick them up and asks what they plan to name the baby.  She gives a name like Ethan or something (I can’t remember exactly.)  John Cusack’s character pipes up and says….”No, we can’t name him that.  It sounds like a kid that eats paste.  We have to give him a strong name like Nick.  Nick’s your buddy, he’s your pal.  You can throw up in his car.” By the way it is a great movie!

Now we get a lot of questions about the spelling, Nicklas.  Yes it is a real way to spell it, at least in Sweden it is.  After he was born, Al gave the attending nurse that spelling on the birth record.  He actually thought that was how Jack Nicholas spelled his name.  I didn’t really pay attention at the time as I was feeling the after effects of giving birth.  FYI, his middle name, James was taken from his grandpa Jim.

I still haven’t answered the burning question of the name “P.B.” Well this stands for “Pasta Boy.”  For as long as I can remember, the boy can eat his weight in pasta.

Nick and Gma … the early days…..

I don’t think I have ever seen such delight as when Nick is presented with a large bowl of pasta. Around the age of seven we upgraded to the adult portions as the child’s plates just weren’t cutting it. The servers always look at him with skepticism as they put the heaving bowl of spaghetti with marinara sauce in front of Nick.  But we knew would polish it off.

Going….

Going………………..Gone!

Here he is after a full day of rides at Disneyland…. and a full bowl of pasta….stick a fork in him.. done!

To this day he still jams it out…. and delights in every moment…..Before….

and after…..

While Nick has an extra chromosome in the 21st pair (Down syndrome called Trisomy 21) that has given him many physical attributes that make him look different he has a lot of the same genetic characteristics that make him more like us than different.  He is a string bean and his build is very much like mine.  Speaking of nicknames, mine was “Twiggy” a famous model from the 1960’s.

I was a dinky little kid….

Nothing but arms and legs…with my sis, Laura isn’t she cute. And hey how about those matching Easter dresses crafted by my Mom the expert semstress! (That’s Bo our Border Collie in the background.)

Back then much like Nick does, I could eat whatever I wanted and not gain an ounce.  My personal best was when I was ten years old at Poncho’s Mexican Restaurant located in the heart of beautiful Pasadena, Texas (you know…. where the award winning movie Urban Cowboy was based.)

I was trying my best to keep up with my brother.  Poncho’s offered a family friendly and affordable all you can eat buffet.  You go through the line for the first course feasting hungry eyes as you chose from the vast  steamy trays of spicy entrees. Once you have finished with round one you simply raise the miniature, plastic Mexican flag at the center of the table and the server will take your next order.

 So drum roll please, my personal best was….. tada… thank you….

10 enchiladas

8 Tacos

2 helpings of rice and beans

2 sopapillas (Sopapilla=fried dough that you load up with honey and bite down and it is a gooey, warm and delicious mess!

Driving home from Poncho’s was never a treat with my brother in the car. The three of us would be jammed with our stuffed selves in the backseat of the blue Chevy-Nova station wagon with no AC and in a matter of minutes Tom could summon his colon to rip out the worst farts ever. I could never pump the window handle fast enough to get the stinch out.  I would look over at Tom who would be busting out laughing and rather proud of himself.  Oh, and he would keep a death grip on his window handle tight so the window stayed up.  By the end of the ride back to La Porte it was like that scene out of the movie “Blazing Saddles.” (I hope my friend, Ristow is reading this. He loves the potty humor.)

And so it appears that I have seriously taken the word digress to a whole new level this week.  It would be remiss of me not to mention how much joy Nick gets out of letting a few rip each day (and yes he loves Mexican food nearly as much as pasta.) He totally knows he is funny and will look right at you with that dastardly laugh and vein popping out of his forehead. In fact each morning I am warmly greeted by Nick who comes into the bedroom and lets one go and says “farver” with a laugh.  Oh what a delightful wake up call. I love Nick’s sense of humor, unspoken but sometimes no words are needed.  He also delights in his burps too.  As soon as he takes the first few sips of Sprite at a restaurant he begins the litany of burps sounding like a frog in heat.  I often want to ask “Could you seat us in the burping section.”

“OMG, I just let go of the best burp ever!”

Please forgive my “*Sophomoric humor” clearly I have gone off the rails.  Living with a bunch of boys will do that to you. That is what is in my noggin this week, just a pile of protoplasm. I will blame it on getting a year older. Hey, it’s my birthday today.  I am raising the red, white and green flag for a second helping. Load me up and light a match!

Cheers to celebrating another birthday as well to our country on Wednesday, raising the red, white and blue!

Until next Monday may the sound of fireworks rip and roar in your life and excite you as much as a giant bowl of pasta or refried pinto beans hee hee….!

~Teresa

*Sophomoric humor refers to juvenile, puerile, and base comedy that would normally be expected from an adolescent. It is used to refer to a type of comedy that often includes bathroom humor and gags that are based on and appeal to a silly sense of immaturity.