Down syndrome – Page 28 – Down Syndrome with a Slice of Autism

Blog #46~A Day in the Life of Nick

Posted on March 18, 2013March 18, 2013 by Teresa Unnerstall

Blog #46~A Day in the Life of Nick

This morning I am prepping for Nick’s IEP meeting to be held at 11:51 a.m. I review all of the progress reports that I requested ahead of time. It is essential to get those reports early so you know what is going on. Plus it saves time during the meeting. I have more tips in Blog #24~Top Ten Things I have Learned While Navigating Nick through School, (located in the October archives). I want to give you a glimpse into the day in the life of Nick’s world at school. What does someone like Nick who has Down syndrome and autism (lacking reading and writing skills) work on in school?

His day starts early, the skies are still dark when the bus rolls up at 6:30 a.m. Most mornings Nick is dragging but when I mention it’s a community day he tends to perk up a little quicker. The first two periods of Nick’s day are called “Life Skills.” The class looks at the calendar, works on dates, upcoming events and the weather. Nick enjoys telling others about the weather and is consistent in picking out the correct icon and working the weather page on his iPod Touch Chat program. After calendar, the students practice yoga. They are following the “Get Ready to Learn Yoga Program.”

This is followed up with reading skills working on IEP goals of community safety words and pictures, computer programs and group news sharing session of current events. On Thursdays there is a cooking unit. Nick loves it and has tried several new foods this year including chili mac, waffles, pancakes, chocolate chip cookies and spaghetti tacos. Now I am hungry! 🙂

Here’s an example of a recipe they use at school for monkey bread…….

Third period is called “Home Maintenance.” During this time Nick prepares a simple snack. He makes a choice using either his picture icons or iPod Touch Chat. He likes Cheezits, pretzels, popcorn, salami and cheese. Here he is able to practice fine motor skills like cutting and opening packages with the occupational therapist. He also works on hygiene skills, (brushing teeth, putting on deodorant and body spray, etc…). For practical information and visual supports about hygiene and dressing be sure to read Blog #22~Grooming 101 (located in the September archives).

Nick takes adapted physical education in fourth period. Units include soccer, swimming, basketball, volleyball, badminton, kickball, adventure education and walking. He really enjoys the interaction with peer buddies in class. Period five is lunch time. 🙂

In the afternoon for periods six through eight, Nick has “Vocational and Community” skill building. Nick is working at job training sites three days a week. These include Tabor Hills (retirement home) and Re-Store (Habitat for Humanity) where is responsible for vacuuming.

His third job is at Adopt (animal shelter) where he removes leaflets from stacks of newspapers for cages. On the other days he has school jobs which include shredding, work bins, rental laundry. Wednesdays I have no problem getting Nick out of bed. It’s community day. 🙂 He enjoys it and is so happy being out and about. The activities include dining out both at fast food and sit down restaurants, mall walking and shopping at Wal-Mart for groceries to use in the cooking unit. Here he works on his goal to pay with a debit card.

Nick trying on sunglasses at the store…… He’s looking pretty fly!

He can manage a grocery cart (with reminders to not purposefully run into items or people)

Ramming speed ahead! You should see Nick barreling through Costco 🙂

That is the day in the life of Nick in high school. His days are filled and structured during the week from 6:30 a.m. until 2:30 p.m. He loves going to school and enjoys the staff (and giving them a run for their money.) That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Fun Side of Nick

Blog #39~Hardy har har Nick

Posted on January 28, 2013December 6, 2013 by Teresa Unnerstall

Blog # 39~Hardy har har Nick

I spent a lot of time just observing Nick this weekend. The frigid temperatures begged us to stay hunkered down at home layered up in sweats and bulky sweaters. I thought a lot about what I have already written since I started the blog last March. One thing about Nick that stands out is that he is a funny guy (even when he is being a pain in the butt.) As soon as I sat down to the computer, he came over and carefully balanced this on my thigh. Then he ran away laughing. 🙂

Harold the Helicopter is using my thigh as a landing strip.

He loves playing jokes on us. There is a signature sound he makes, it’s a stimmy sound like his is saying “geeeeeehhh,” while he flaps his hands by his ears. I stop, look and listen to see what he has been up to. Oh hardy har har, he turned on the faucets in the bathroom full blast and ran out quickly. Sometimes while showering, he will turn the lights off on you too. Now that’s funny stuff. 🙂 After his shower last night, I saw him out of the corner of my eye putting something underneath the covers on my side of the bed. He pulled the covers up quickly and took off all excited. Underneath here is what I found.

Sneaking Mr. Platypus under the comforter……….

Then a little while later…….. He’s on a roll….

He also likes to mess with our cat. I am not so sure that Miss Mellie appreciates the *propinquity of Nick’s stuffed animals on top of her…….

Poor kitty, I don’t think she wants to be a velcro icon strip.

There are a lot more pictures in Blog#33~Stuff on my Cat located in the December archives!
I admire his cheerful spirit. He wakes up each morning with a big smile and first thing he does is let out a big fart while gleaming proudly might I add. What a great wakeup call. 🙂 In the same sophomoric vein, that boy can rip out the loudest and longest burps all from just a mini eight once can of Sprite. If you want to get a better sense of Nick’s funny side you’ve got to read Blog #6~The Nick Connection (in the May archives) and Blog #14~PB Unnerstall (June archives.)
Yesterday morning I watched him cheerily dancing side to side with his headphones on. He was in the zone. As a mother there is nothing better than seeing your child happy and hearing them laugh. Well wait a minute…. maybe when they sleeping like angels. Now that supersedes everything else. 🙂

Oh yes the sound of silence, zzzzzzzzzzzzzzzzzzzzzzz…..

Looks like the cat isn’t holding any grudges.

Here are a few other examples of his sense of humor. He thinks it’s funny when he bangs or bonks himself accidentally. Anytime he drops something or someone else does he busts out laughing. He enjoys watching You Tube videos of funny cats, epic fails like the ones you see on the show America’s Funniest Videos, and people sneezing. Many of his favorite movies are comedies. Eddie Murphy is his favorite (Dr. Doolittle series, Norbit, The Nutty Professor) along with Mrs. Doubtfire and Little Man.

My funny guy, that’s what is in my noggin this week.

I think humor is what has kept us afloat all these years.

Have a great week, and keep that sense of humor with you!
~Teresa

*According to Ask.com, the word propinquity means a close kinship or similarity. It can also mean being close to someone or something, either physically or similar in nature.

Down syndrome, Physical Therapy and Special Needs

Blog #37~ Just Do It!

Posted on January 14, 2013December 6, 2013 by Teresa Unnerstall

Blog #37~ Just Do It!

This week I want to hop on the fitness bandwagon. I ‘m not really hopping on it. 2013 marks 30 years of teaching in the fitness industry. The gym gets busy in January with folks coming in with their resolutions to get in shape. Are there any trade secrets? How can someone like Nick who has Down syndrome and autism keep fit?

Buff Nick is too cool by the pool….. 🙂

First of all there are physical attributes that are associated with Down syndrome which should be considered. Here is what I pulled off the following website, Livestrong.com is a great resource for more than just its well known cancer support:

http://www.livestrong.com/article/367865-exercise-safety-tips-for-those-with-down-about…”syndrome/#ixzz2Hu6k2Yg3

“Injuries may be caused by many of the symptoms of Down syndrome, including an underdeveloped respiratory and cardiovascular system, poor balance, perceptual difficulties, hypotonicity — muscles that have the ability to stretch far beyond their normal limits — hypermobility of the joints, and ligamentous laxity, which is flexibility of the joints associated with an increased risk of dislocation, says the National Center on Physical Ability and Disability or NCPAD. In approximately 17 percent of people, there may be a severe cervical cord disorder known as atlantoaxial instability that is characterized by laxity between the first and second cervical vertebrae. This makes spinal cord injuries much more likely. If a physician allows exercise, strict monitoring is important to avoid injury to the spinal cord and other areas of the body.”

Nick had a spinal x-ray which ruled out atlantoaxial instability. This screening should be done before any exercise program is implemented. Because of his low muscle tone he received physical therapy and early infant and childhood intervention programs which showed us how to incorporate exercises into his daily routine and play time.

Here are just a few things we put into place at home:

*Sit your child on a small ball and do music time and bubbles to build core strength.

*Create a mountain with a bean bag chair and blankets. Put a preferred music toy at the top so your child will have to climb up it to reach it.

*Tack musical toys up so your child will have to pull up to stand to play with them.

*Push toys can sometimes be too light, so add some weights to them so it is easier for your child to be stable and push them.

*Bean bags work great to work on vocabulary. Line up a few flash cards and have your child toss the bean bag to the word you want them to recognize and speak.

*Balls, balls, balls. Get a mini basketball hoop, Slo Mo balls and nerf balls are easier to catch. I use to have Hank bounce ping pong balls on the coffee table to entice Nick to pull up to stand.

Now that he is older I have incorporated more household chores in his routine like vacuuming, taking laundry baskets up and down the stairs, and unloading the dishwasher.

In school he takes P.E. and enjoys swimming, walking on the treadmill and even yoga. Of course his favorite is dancing. He slaps those headphones on and goes hard. There are many programs through your local park district as well as Special Olympics that can enrich the lives of people who have special needs.

It’s all about consistency in having an active lifestyle, which should begin in childhood. Increasing activity will help minimize obesity, decrease cardiovascular and type II diabetes risk factors. For aerobic and strength training, make sure adolescents participate in recreational and community activities.

What about the rest of us? The same holds true about consistency in exercise and dietary intake. It’s not rocket science. Calories in and calories out is what it boils down to. If you consume more than you burn then you are going to gain weight.

Here’s my top 10 Tips…….

Get medical clearance before starting any exercise and dietary program.
It’s a good idea to enlist the help of a personal trainer who can help you set goals and a timeline. Be sure to ask about the FITT Principle when setting up your program (Frequency, Intensity, Time and Type of exercises.)
Carve out a reasonable time of day that you can commit to and make it a part of your routine like brushing your teeth. (You wouldn’t skip brushing your teeth would you?)
Pick activities that suit your interests and will keep you motivated. Mix up your workouts so you incorporate all 5 components of fitness (Cardiovascular strength, muscular strength, muscular endurance, body composition and flexibility.) Total fitness!
Every little bit adds up. Take the stairs, park further away, do some triceps dips while you wait for the shower to warm up, etc…
Use it or lose it. Did you know you start to lose training effects after just 48 hours of inactivity?
Don’t obsess with the number on the scale. I always say your jeans don’t lie!
Shop the outer aisles of the grocery store, fresh is best. If you can’t pronounce the ingredients on a label it might be wise to leave it on the shelf.
Have a support system in place. Get some workout buddies that will hold you accountable. There are also some great phone apps to help track and keep you motivated. Check out the app called “My Fitness Pal.”
All in moderation, when it comes to eating. Don’t deprive yourself of your favorite foods now and then. If you know you are going out for a nice meal plan to eat lighter that day. Watch those serving sizes too. I love the visuals like one serving size of protein=a deck of cards, one serving size of pasta=a tennis ball, one ounce of chees=a pair of dice. Check out sparkpeople.com and foodnetwork.com for more of these tips.

Finally let me borrow a slogan from Nike, “Just do it!” That’s what is in my noggin this week. Cheers to feeling good and having fun while you’re at it. Nick and I highly recommend putting on your favorite music and dancing it out!

~Teresa 🙂

Down syndrome, Health Issues and Special Needs Child

Blog #36~ What is Red and Green and Runs All Over?

Posted on January 7, 2013January 14, 2015 by Teresa Unnerstall

Blog #36~ What is Red and Green and Runs All Over?

Answer: That would be Nick and his ruddy cheeks and nose crusted with green, gloppy boogers from a cold.

The nasty funk that boy can emit from his nostrils is like a faucet that can’t be shut off. Under the mucus are his parched, red cheeks that blare even more with the cold air beating over his dry skin. Welcome to the cold season and Nick’s world. 🙂

Certain traits attributed to having Down syndrome factor into the likely occurrence of more respiratory infections. “Medical & Surgical Care for Children with Down Syndrome,” available through Woodbine House is an excellent guide for parents who have a child with Down syndrome. Here is what this guide says about drainage and colds:

“Physical growth may also be different in the details. The head and facial features (eyes, nose, jaw, ears, etc.) of children with Down syndrome are smaller and may grow more slowly than in other children. As a result, facial structures such as tear ducts, sinus passages, and Eustachian tubes (connecting the middle ear to the back of the throat) may be smaller in size and become blocked more easily. This contributes to an increased likelihood of tear duct, sinus, and ear infections in some children.”

“In addition, because of the relatively small size of the nasal cavities, sinusitis is common. So, too is drainage from the nose because sanal drainage s often due to infection or inflammation of the sinuses. Eight out of ten children with Down syndrome have persistent nasal drainage.”

Children with Down syndrome are prone to having dry skin and hair. Here are a few things that I’ve found essential to include during the winter months:

1. Aquaphor: a great healing ointment that is non-irritating and soothing.

2. Oils of Aloha- Hawaii’s Kukui Conditioning Shampoo: A less harsh dandruff shampoo that doesn’t sting the eyes. Here are my two favorite body washes:

At Bath and Body Works, really relaxing and clears the head…

Skin soothing body wash for sensitive skin…

3. Exergen Temporal Scanner: Swipes across the forehead, easier for those with sensory issues.

4. Hand Sanitizer: This along with constant hand washing and not touching your face in between. Did you know cold germs can live on surfaces for 7 days. So, If you have to touch your face use the inside of your shirt and not your hands.

5. Cover Up: A sneeze can travel 32 feet in the air. I always do a duck and cover with my arm or turn quickly away when Nick fires one at me.

Each winter season, I find myself dressing Nick in the hues of grey and green or camo colored shirts when he has a cold. These colors blend in better when he decides to blow his nose and wipe it on his shirt. It has never been easy giving Nick medicine. He is unable to take anything in pill form so it has to be liquid or dissolvable in form. Countless times I’ve tried to get him to down a tiny cup of Dimetapp. The end result was him spewing that sticky, purple stuff all over the both of us. Now that he is older, it has become much better. I hand him the cup of Dimetapp and he slams it down as if it was a shot of Patrón.

Cheers to that! 🙂

Having a child who has Down syndrome and autism can be extra challenging when they are not feeling well. Because his speech is so limited he is unable to tell me how he feels. I have to go by his energy level and the look in his eyes.

Poor guy…….

The sure fire way of knowing he isn’t feeling well is his appetite. Hmmm, is it *Feed a cold; starve a fever or the other way around?

Answer: At the end of this post.

The cold season can be rough, especially with a child with special needs. I hope these tips might helpful for your family. For more information about health and Down syndrome click on @https://nickspecialneeds.wordpress.com/2012/11/26/blog-32-cheers-to-good-health/

That’s what is in my noggin this week. Here’s to a mild cold season for all of us and to a healthy New Year in 2013!

~Teresa

*According to Ask Yahoo, The original maxim is “feed a cold, starve a fever.” In other words, eat plentifully to fight a cold, and resist food if you have a fever. To avoid confusion, we recommend steering clear of both versions of this myth. The Straight Dope dates the practice of fasting to combat fever to a 1574 dictionary. As do many other medical practices from the Middle Ages, starving yourself when you’re sick seems to us to be a pretty questionable tactic. However, opinions on the issue differ. A 2002 article from New Scientist cites a Dutch research team that ran an ad hoc experiment and came to the conclusion that “eating a meal boosts the type of immune response that destroys the viruses responsible for colds, while fasting stimulates the response that tackles the bacterial infections responsible for most fevers.” But the evidence is far from conclusive. Colds and flus are caused by viruses, and your body needs energy to fight them. Stay at home, eat light, healthy food when you’re hungry, and drink lots of fluids. You can find lots of other ways to fight the flu naturally at eHow.com.

Autism, Down syndrome, Fun Side of Nick

Blog #33~ Stuff on my Cat

Posted on December 3, 2012April 9, 2015 by Teresa Unnerstall

Blog #33~ Stuff on my Cat

December is such a crazy, busy month so I am going to keep the posts light and quick. I have yet to talk about one important member of the family. That is Miss Mellie, our 16 year grey tabby. She has a rough life following the sun coming into the house and basking in the glow……

When she’s not soaking up the rays she is usually on somebody’s lap. Here she is not quite a year old with Hank, age 4……

When the boys were toddlers I had an orange tabby named Woody who lived to the ripe old age of 17. Woody didn’t have much to do with the boys. Note Nick again leaning on his brother. You can see his low muscle tone which is a characteristic of Down syndrome…

My sister, Laura pointed out a great website called “Stuff on my Cat” a few years back. This site is a hoot, check it out at www.stuffonmycat.com.

For as long as I can remember we have been putting random things on our cats. By the way cat lovers, they also have a book and calendar too. We’ve had a lot of fun with this. So have Hank and Nick!

Hank put a toy cowboy hat on top of Miss Mellie. Howdy partner…… 🙂

Then he put a Superman cape on my sister’s cat, Paco……It’s a bird, it’s a plane, no its Super Cat!

Nick has followed suit with putting stuff on our cat… not always to Miss Mellie’s liking. He likes to give her love pats and he thinks it’s hilarious to sneeze on her too. Nick has Down syndrome and autism.

Poor Mellie has fallen victim to some of Nick’s dumping (Blog #3 Getting your Goat has the complete list of dumps!) Let’s see…. baby powder, fajita seasoning, PEC icons, then splat…. Head and Shoulders shampoo….

Nick thought that was so cool he gave himself a couple of dollops…… 🙂

Here kitty, hope you enjoy one of my stim toys…..

Who needs a Velcro strip, Nick just uses the cat…..

If there are no other laps available she will get desperate and settle for Nick.

Mellie is pretty lazy but there are two things she will jump up for. The sound of the can opener sends her sprinting to the kitchen. “Oh yes it must be tuna!”

The other is the dryer door closing. That means warm laundry and maybe a dryer sheet on her head………

Meow to the Easter Kitty…..

Mellie stoned on Christmas cat nip…..

She seems to be doing well despite the stuff we put on her. That’s what is in my noggin this week. Until next Monday may you take time during the holiday hustle and bustle to enjoy what makes you happy like a good cozy lap!

~Teresa

Meow….. 🙂

Down syndrome

Blog #32~ Cheers to Good Health

Posted on November 26, 2012February 19, 2013 by Teresa Unnerstall

Blog #32~ Cheers to Good Health

Over the weekend, we took Nick over to the clinic to get his blood drawn. I say we, because it is no longer something I can do alone. Nick is strong and getting his blood drawn requires some muscle power. At least 3 people to hold him down and one nurse to do the procedure. Just when you think you have him locked down another appendage will wiggle out and break free. I am not sure which is worse this or trying to bathe a cat. I can’t say I blame him. I am not a big fan of blood draws either. I turn my head the other way so I don’t get light headed and pass out. Nick did a decent job and recovered quicker this time. Of course his arm then becomes incapacitated the rest of the day.

Nick is a lefty but can’t seem to use that arm to eat…….. 🙂

Last year it was much worse, they had to draw three viles of blood instead of one.

Walking upstairs from the lab last year……

Still obsessed with the arm later in the car…..I think he’s milking it 🙂

One more, of arm immobilized…..it doesn’t seem to affect his appetite 🙂

There are health issues that can occur with having a child with Down syndrome. 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. In addition, all children with DS should be screened for Atlantoaxil subluxation or dislocation. This is done with a cervical spine X-ray. If the distance between the axis of the first vertebra and the second vertebra is more than 4.5 mm restriction from sports is advised. Nick’s registered at 3mm so it was under the limit and thus no restrictions in physical activities. Many of these conditions listed above are now treatable, so most people with Down syndrome lead healthy lives. For more information about Down syndrome read Blog # 7 Mama Mia.

I am very grateful that Nick has been healthy and he has only had a few minor problems over the years. Well with the exception of when he was born. Nick was in ICU for a week and kept on oxygen and had tubes strapped all over him to monitor his vital signs. The neo natal specialist noted that he was having trouble breathing. A few days later an ultrasound was done that showed no signs of having any heart defects but rather a valve in the lung that was not closing properly. Fortunately, this was something that closed on its own. He was discharged after a week and sent home with a monitor that was used at night as a precaution. Besides this initial scare, his health issues have been minor.

He had his share of ear infections growing up. Here he is with his brother Hank and Grandpa Tommy back when we lived in Texas.

“Mom, my ears hurt I need some Amoxicillin.”

Nick has had a few sets of ear tubes put in over the years. This is an outpatient procedure and seemed to help eliminate the ear infections. At age three, he had his tonsils and adenoids removed. It is so hard to see your child in pain isn’t it?

Poor little guys looks so sad here….. 😦

From a health standpoint, we have had it easy compared to a lot of kids with and without special needs. My first prayers in the morning are always for good health for my family and friends. It is a gift that should never be taken for granted. “He who has health, has hope; and he who has hope, has everything.” Arabian Proverb That’s what is in my noggin this week. Until next Monday, cheers to good health!

~Teresa

Autism, Down syndrome, Fun Side of Nick

Blog #28~ Halloween Costumes and a Special Needs Child

Posted on October 29, 2012October 27, 2014 by Teresa Unnerstall

Blog #28~ Halloween Costumes and a Special Needs Child

I wanted to lighten things up this week and show some of the fun Halloween costumes the boys have worn over the years. I love dressing up for Halloween. You can show your alter ego and reinvent yourself. It has been a blast creating looks and finding unique costumes for the boys. Having a child with special needs which include sensory issues can make it challenging. My son, Nick has Down syndrome and autism. He doesn’t tolerate masks, barely wears hats and gloves much less the extra accessories. Needless to say, he has never dressed up as a pirate. Here’s a look at some of the Halloween costumes the boys have worn.

1994~ Nick’s first Halloween. He’s 8 months old. Grandma Theresa had these made for the boys. Look at my cute lil pumpkins…… 🙂

The following year we went with the cowboy theme. Hank and Nick like me, are native Texans. Yee ha boys…….

I am not the only one who likes to dress up. So does my brother Tom, who decided to go as a baby in the picture below. I am pretty sure that’s not milk in his bottle. They took the wagon for Nick (who wasn’t walking yet) and most likely for that cooler by my brother’s feet. Also in the picture is Hank went as a pirate…Arrrrrrrrrrrrrrr. The little dinosaur is my nephew, Austin. 🙂

The next few years we lived in Livermore, California. Hank looks menacing while Nick made a sweet, little M&M. Wonder how long those gloves stayed on Nick? Answer: Long enough for me to take the picture!

Nick got such a kick out of his brother’s mask. Hank was in the scary costume period like most boys go thru. Al is sporting his old Mardi Gras wig….

Here’s a close up of Nick. “I’ve cast a spell on you!”

Halloween 2000 in Livermore, Hank with his Dad…….

And Nick made an awfully cute Sponge Bob (minus the gloves)

Halloween 2001, we had moved to Chicago where you have to bundle up for Halloween. Hank was so excited to be the creepy clown and scare his friend next door. Does anyone else have a creepy clown phobia? What I found for Nick with having Down syndrome and autism was the necessity to keep the costumes simple. There are many costumes that just slip over his head in one piece and without covering the face. These seemed to work the best for him.

Pizza anyone?

I had many neighbors tell me that they looked forward to seeing what the boys were going to be for Halloween. Hank in particular allowed me to get more creative during his early teen years.

Hippy Hank looking groovy with his friend Bobby…..

Nick was a referee. Guess how long the hat stayed on? Answer: Long enough to take the picture 🙂

This could be one of my favorites, nerdy Hank. We had a lot of fun putting this look together. By the way those glasses were his Dad’s (the Clark Griswold look from the late 80’s) I’ve always saved all kinds of things like this over the years to enhance Halloween costumes. By Hank’s side is Seargent Nick ready to report to duty…..

Hank went a totally different direction the following year…………..

This costume seemed to suit Nick who loves the farting humor, 2009……

Halloween 2010, It’s Super Nick!

Nick is pumped up for Halloween this year…..

Guess how long the dew rag stayed on his head? Answer: Do you even have to ask? 🙂

It’s been fun pulling out the photo albums and taking a trip down memory lane. The boys are all grown, but they both still dress up for dances and parties at school. You can get pretty creative finding costumes for a child who has special needs and sensory issues. That’s what is in my noggin this week. Until next Monday, enjoy your Halloween under the full moon and watch out for those creepy clowns!

~Teresa

Down syndrome

Blog #26~ Down Syndrome Awareness Month!

Posted on October 15, 2012September 28, 2015 by Teresa Unnerstall

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 🙂

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.

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! 🙂

~Teresa 🙂

Autism, Down syndrome, Education and Special Needs

Blog # 24~Top 10 Things I Have Learned While Navigating Nick through School

Posted on October 1, 2012February 19, 2013 by Teresa Unnerstall

Top 10 Things I Have Learned While Navigating Nick through School

This weekend I was prepping for a lecture called “A Parent Perspective” which I do at Aurora University. For this semester there are two classes one undergrad and a graduate student class all who are/ or planning to become teachers. Since Nick is a senior in high school I decided to include a top ten list of some things I have figured out over the years. While compiling this list I couldn’t help but think back to those early days. I was a novice and such a chicken when it came to IEP meetings. I have a degree in teaching secondary education (Kinesiology and Health) but very little experience teaching special education. I took a class similar to the one I am lecturing while at The University of Texas. It gave a broad brush of special education and included an internship in a self- contained classroom and gym class. Beyond this I knew very little on how to take the helm and steer these uncharted waters.

Aurora University working with Elliott who leads the classes….

The early intervention program was easy (birth-three years old.) The staff was nurturing and it was a *can of corn. Once the cord was cut Nick entered the early childhood/ pre-school program things were more serious and the meetings took on a different tone.

Because Nick had very low muscle tone (a trait of Down syndrome see blog #7 Mama Mia, for more information on DS traits) he was delayed in gross motor activities. He didn’t walk until age 3 ½ nor eat solid foods. At age three during the transition from early intervention to early childhood/pre-school I enlisted a private speech therapist who specialized in feeding. Amazing how one person can impact your life. Pam opened up my eyes. She got me thinking outside the box. She also worked at a private school in Houston and suggested we look at putting Nick there. The private school called The Arbor School had one opening three days a week. It was an oasis, this all-inclusive resort with all of the speech, occupational and physical therapy right on campus working together. They got their hands on Nick and worked magic. Nick attended The Arbor School three days a week and the public preschool program the other two days. When the IEP came around at the public school, the whole Arbor School team came. Our entourage sat down and matter of fact like made sure every attention to detail was addressed. I was stunned. What you can actually assert for yourself and get all kinds of services, equipment and therapy hours, I had no idea.

Nick at the Arbor School…..

The petting zoo came to the Arbor School during Go Texas Rodeo Week…

In California when Nick was in first grade I found my concerns of his need for a communication system going on deaf ears. I brought in the Director of the Down Syndrome Connection support group. The entire staff sat up straight as she advocated for my son.

Nick and I in Livermore, California…..

Much the same in middle school I enlisted the help from Little Friends Center for Autism. I can’t say enough about the Arbor School, The Down Syndrome Connection and Little Friends. What a gift they gave me as they showed me how to become an advocate for Nick.

So here is……….….The List!!!!!!

Top 10 Things I Have Learned While Navigating Nick through School

Determine a method to communicate with the staff (communication notebook, email, daily reports.)
Meet with the support teacher to discuss goals for the following year. Request all goals and reports from each department for review before the IEP meeting.
Get everything down in writing in the IEP (from a 1:1 Aid to the chewy sensory toy.)
I am not a bad parent because my child won’t keep gloves on/ or has a meltdown in school.
Sometimes the parent has to be the one to rattle the cage.
Get help when you need it (support groups, workshops, trainings, respite care, etc..)
Know your rights, Read Wrightslaw.
Don’t settle for just any solution if a problem
doesn’t get better. There is always a better way.
Sometimes as a parent you have to let go of your own dreams for your child so they can move down a different path.
The parent is the biggest advocate for their child with special needs, trust in that.

Bringing support into IEP meeting does give a parent confidence. But in most IEP’s my hand has been on the helm. What I know for certain is that communication lines have to stay open. I also learned to quit beating myself up because Nick had meltdowns (now we know that he was powerless because he couldn’t communicate his needs and it is not my bad parenting.) Once the autism diagnosis was given, I had to reach out for help get more training and arm myself to fight the big fight. I quit settling with the school staff and learned that I had to ask for more to help my son thrive. I wasn’t being a bitchy mom; I approached the problems in a matter of fact, but firm manner. And sometimes that means I have to be the one to rattle the cage to obtain services to support my son. In addition, I found that just because I have a dream for Nick doesn’t mean he can fulfill it. Facing the fork in the road that separated him from an academic curriculum to a functional curriculum enabled Nick to focus on what he was meant to do. Hello T, he just isn’t ever going to write his name, let go of that academic goal.

So here we are, Nick’s senior year and after riding some rough waves now the seas are relatively calm. We survived and came out on the other side much wiser and stronger. That’s what is in my noggin this week. Until next week, I hope yours will be a *can of corn.

~Teresa

* According to Wiki Answers: The term “Can of Corn” is a phrase used to describe a softly hit baseball as it could easily be caught. The term originated as a customer would ask a grocery clerk for a can of corn the store clerk would grab a can from the top of a stack of cans, and would softly toss the can down to be caught without harm.

Autism, Behavior/ ABA, Down syndrome

Blog #21~ What Is Normal?

Posted on September 10, 2012June 24, 2013 by Teresa Unnerstall

Blog #21~ What Is Normal?

What is normal? To quote Whoopi Goldberg, “Normal is just a setting on a washing machine.” Normal is boring, average right? So why do I crave normal? I was driving through my subdivision the other day and I saw a group of high school boys on bikes and skateboards. I found myself thinking, that’s all I really want….to see Nick doing something like regular kids do every once in a while.

Last Friday, my neighbor’s son came over after school. I witnessed normal. I handed him the remote and he sat down and watched a Chuck Norris movie. Later, while he read a book Nick stood by rocking back and forth like he often does. He then asked me, “Why does Nick always stick his hand down his pants when I am over here?” Oh, I guess that is not normal. 🙂

In Blog #20 I wrote about some of the activities Nick still enjoys and how they are far from being age appropriate. I want to expand a bit more on it this week. If you read last week’s post, I bet you are wondering what he is watching right now? That’s right he is still on a Thomas the Tank Engine kick. I crave normal because there is noise and chaos living in Nick’s world. Let me put a lens on it. The boy pushes buttons all kinds….. of course fire alarms being his favorite. 🙂 Besides the Holy Grail that being the fire alarms, he also enjoys the phone intercom, volume on the remote control, and popcorn button on the microwave. Is it normal to have to keep a cup of water in your microwave so it won’t burn up? Is it normal to hide your car keys up high on the kitchen cabinet so your child doesn’t set off the car remote alarms? Doesn’t everyone have to hide their cell phone so their child doesn’t send it swimming in the toilet? Speaking of toilets, is it normal to call the plumber to unclog something your eighteen year old flushed? Sergio, my plumber had a good laugh. He told me in his Hispanic accent, “You can still wear theeeese glasses they were in clean water, not poopy water.”

That’s where my readers ended up!

Okay, my mom said I use to take the knobs off the high fi and throw them in the toilet but I was only three.

Over the years strange things have gone on with Nick in our house. I can still remember Nick’s “naked phase” about seven years ago. It was getting dark outside and his older brother Hank came in from the front yard.

“Mom, I could see Nick from the cul-de-sac. He was *buck naked at the top of the stairs holding his wang.” Sure enough I came out of the kitchen to see a prepubescent Nick stripped down with the light of the chandelier illuminating his naked body groping his you know what. I ran over and grasped the dimmer switch and pulled it straight down. We shook our heads. I knew exactly what Hank was going to say. “That boy ain’t right.” Its what we always say when Nick does something strange, call it our defense mechanism.

I am not sure what was going through Nick’s mind at that time or during any of his wacky stunts. I tried to express it with art when Nick was in third grade. Remember the spoon man project? The kids mold a clay head and it is attached to a spoon that sits on top of a platform. It is up to the students and parents to make the spoon man come to life. This won a spot in the school district art show that year.

Note the artful details around the neck line. Nick use to chew his shirt and it was always wet and mangled……

I wish I could crack open his skull and see what’s inside. What I figure is that he knows that he is a funny guy. I wonder what it would be like if he just had Down syndrome and what he would bring to the table. I did stumble on a cool quote by actor, Chris Burke who starred in the hit television series, Life Goes On. This made me smile…. 🙂

“Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways that is the way I can describe it. I have a normal life.” ~Chris Burke

It’s hard not to get swallowed up in Nick’s crazy world. Ordinary is welcomed. “Don’t take normal for granted.” That’s what the mother of a 7 year old cancer patient said on the radio during a children’s cancer fundraiser event last week. I get that, totally. But then again, if I had normal I wouldn’t be writing these stories would I? I wouldn’t have fun pictures like these to share. This is what he was up to this weekend……

I told Nick to get some clothes out and get dressed…..Looks like he is ready for the whole week….

For the record that was 11 shirts, 7 pair of pants and 3 pair of undies…..

Nick at the park walking swift and robotically with his arms up like a Bears linebacker….

Move over Brian Urlacher, Nick is poised and at ramming speed.

Nick pretending he is drinking two cans of mushrooms, he just fills up the canvas with silliness…..

When you rock the extra chromosme you can easily sit like this……He’s still very bendy…..

So perhaps normal is just a setting on the washing machine and nothing more. I have to remind myself to embrace chaos and be content with all the colorful moments that Nick has brought into my world. That’s what is in my noggin this week. Have a great one and until next Monday, may your canvas be filled with hues of many brilliant colors. 🙂

~Teresa

*Buck naked. I always wondered if it was that or butt naked. I guess I’m not the only one. Here’s what Wiki.answers says:

“It is both. The word “buck” or “buff” is thought to be from the color of a buckskin, which is the pale tan color of European skin – this gives you “buck naked” and “in the buff.” “Butt naked” refers to the fact that your buttocks are not covered.”

I have always heard it “buck naked”. I don’t think it refers to any color at all; the phrase was originally meant to compare one to an “Indian buck” as the men were called many years ago in a less politically correct age. They were commonly thought to be “naked savages”, whether they were in fact or not. Thus, “buck naked” implied being without clothing.

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