Posted in Autism, Down syndrome, Fun Side of Nick

Blog #33~ Stuff on my Cat

Posted on 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……

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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……

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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…

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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.

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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…… 🙂

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

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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.

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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….

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

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

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

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

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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!”

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

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Meow to the Easter Kitty…..

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Mellie stoned on Christmas cat nip…..

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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….. 🙂

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Posted in Down syndrome

Blog #32~ Cheers to Good Health

Posted on 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

Posted in Fun Side of Nick

Blog #31~ Then and Now

Posted on by Teresa Unnerstall

Blog #31~ Then and Now

I am not sure how this blog is going to come off this week. I am surrounded by loud banging while the workers are replacing the siding on our house. Unlike Saturday when it felt like they were going to come straight through the roof this is more like a piercing in the walls coming at me from all three sides.  Add the sound of scraping metal like finger nails on a chalkboard….You get the picture now, right? It’s like Nick stimming and banging times a trillion.  I should take an Advil now before the pounding goes to my head.  So here we go……..

It was during Thanksgiving week in 2001 when we made our way across the country on our move from the San Francisco Bay area to Chicago.  I am a native Texas gal.  Right from the *get-go I noticed a few different things and that there would be a learning curve to living in the Midwest.  Before I roll up my sleeves on this piece I think I will retreat to the basement, which bring me to my first observation.  There are no basements where I grew up in Texas. It’s nice to have the extra space for the kids to stretch out and play when the weather gets too cold outside. Speaking of cold, the first day I went out to get groceries it must have been 45 or 50 degrees.  In route to Meijer, I was shocked to see the mail carrier wearing shorts.  Once I got to the store I bought a pair of gloves and put them on right away. A few weeks later, we were at the mall.  I remember asking my Mother in law, Theresa why there were red stakes on top of the fire hydrants.  She explained that is so the firefighters could locate the hydrants when the snow gets high.  After I picked up my jaw off the floor I had to wrap myself around the fact that I was going to have to learn to drive in the snow.  It was not going to be easy as I had a Ford Explorer with rear wheel drive (I bought the car in Texas, no front or four wheel drive required.)  The trick is to pull out slowly and let the wheels grip otherwise the wheels just keep spinning around.

It was like driving Fred Flintstone style…….

Here’s another tidbit, I learned…. If you squirt the windshield wipers under 20 degrees without the proper fluid with de-icer your windshield immediately becomes an ice rink and you will have to stick your head out the side window to see where you are going.   In addition, you don’t want to leave liquids open in your car otherwise the insides of the windows will be covered with ice condensation. Out in the community I noticed little things like how all the restaurants have coat hooks by each booth. My favorite is when you leave the grocery store a strong blast of warm air shoots from the vents just before you are thrust out into the cold.  Around the neighborhood some things I noted where that many of the houses aren’t fenced in and the backyards just blend from one to the other.  A large majority of the driveways are black asphalt rather than cement.

Nearly every mailbox has a wood house build around it like this….. Except ours 🙂  Do the mailboxes really need their own little house?

Around four thirty p.m. when the skies darken you will hear the sound of the geese flying overhead.  Sometimes a random family of Mallard ducks will come through the yard and there are always lots of bunny rabbits.  The rabbits were cute until they began to eat my new flowers I planted in the spring. Those are my observations since moving to the Midwest.  Well, I have yet to bring in Nick in the picture…..So let’s get to it……… 🙂

Many things have changed during our time here.  Now, I have a car with 4 wheel drive and heated seats….. toasty and a worthwhile investment! 🙂 The kitchen has undergone a remodel and the boys have gotten much bigger.

Nick then…..At age 8, with blue bottle in hand……..(See Blog #3 “Happiness Is” for more about that.)

Nick now, age 18……

Hank then, age 10…..Oh and Miss Mellie age 7……

Hank now, age 20 and Mellie, age 17…..

Nick has always loved music, here he is then….. Yes that’s a Walkman….. 🙂

And now….My how technology has changed over 10 years….

His taste in music and movies has evolved; well I guess you could say it has. At least it  progressed out of Barney and Thomas the Tank Engine songs and movies to The Nutty Professor and Mrs. Doubtfire. His ipod playlist is legit now thanks to his brother, Hank.

One more of Nick then………

And now…..Nick grew along with the trees and shrubs……

It has been a great 10+ years seeing the boys grow up in the Midwest. 45-50 degrees seems mild to me now. I can now drive decently through the snow and we added a third car. Don’t worry it’s not for Nick 🙂

That’s what is in my noggin this week. Until next Monday remember that time has a way of flying by.  Be sure and enjoy the ride!

~Teresa

*In terms of its origin, the phrase “from the get-go” relates to similar uses of these words in other phrases like “get going.”

Posted in Autism, Speech and Occupational Therapy

Blog #30~ 7 Senses of the World

Posted on by Teresa Unnerstall

Blog #30~ 7 Senses of the World

This week I want to expand more beyond the one aspect of “stimming” which I wrote about last Monday.  I want to dive in deeper into the sensory processing machine.  Admittedly, this subject has always turned me on.  Over the weekend Nick and I attended the NADS (National Association for Down Syndrome) Retreat that targets a special group that deals with more than just Down syndrome.  The hot topic was Sensory Processing Disorder (SPD) was formally called Sensory Integration Disorder.  Katie Frank, MHS ORT/L who works at UIC Family Clinic in Chicago was our presenter who outlined a summary for us.  Thanks Katie for shedding more light to this topic.  Here is my perspective about this subject.

In a nutshell, SPD happens in the central nervous system.  Imagine the pathway from the brain to the 7 senses as a superhighway.  We actually do have 7 senses which include sight, hearing, smell, taste, touch and two others.  No one talks about the other two senses, but they are so important. They are movement-based senses and are known as Proprioception (feedback from the muscles and the joints) and Vestibular Processing (feedback from movement of the head which tells us whether we are right side up or down in orientation.)

When a person has SPD, the flow is disjointed and the brain is unable to do the job of organizing sensory messages. Imagine a superhighway… You know that wide solid blue line on the map that flows effortlessly at 70mph+.  That is how the messages should transmit from the brain to the body. But what if it looks like the tiny grey line on the crumbled map you are trying to unfold and read.  That crooked road that breaks off and leads you into a desolate farm land area trundling at 15 mph…… THAT is SPD!  A formal diagnosis cannot be given by an occupational therapist but they can do assessments and make recommendations to a doctor.  The diagnosis is given when the problems impact the ability for a person to function in daily life.

Now that I have the scientific stuff laid out, the rest will be some concrete examples of what having SPD can look like and what supports can be put in place to help a person who has these issues.  There are three types of sensory modulation problems:

Over-Responsive (formerly known as Hyper sensitive) a person may avoid touching, sights, sounds, smells and certain tastes as they register them too intensely.  If you have ever seen a child with autism walking in a noisy venue like the mall with headphones on or their hands over their ears they are most likely trying to block out the noise for this reason. Their threshold of handling stimuli is much lower. I picture the character of Cameron Diaz’s brother in the movie “Something about Mary.”  He sported headphones all the time and banged his head when confronted with too much stimuli.  For Nick it’s not sound but rather the sense of touch when it comes to haircuts and toenail trimming (see Blog #22~  Grooming 101 for specific information about this topic.)

Under-responsive (formerly known as Hypo sensitive) is where a person may take longer to feel input, aka a sensory disregarder.  They may be unaware of the feeling of messy face or hands and not recognize touch or the feel of an object being dropped.  This person may be more socially withdrawn and may need coaxing to get engaged into the world.

Sensory Seeking   a person goes out of their way to find more input in their world.  They crave stimulus.  This for the most part IS Nick’s world.  🙂 Often when he walks his feet will hit the ground loudly.  His “heavy walking” as we have termed it is seeking extra feedback.  If there is a puddle he will step hard into it to get the splash to seek input.  He chews on inedible objects in particular his sleeves.) Nick also likes to push buttons on the phone intercom, microwave and often turns up the volume on the TV to 96!  He delights in turning on the water faucets full blast.  So you see he is looking for more input in various ways. Check out Blog # 3~ “Getting your Goat” to get a complete picture and list of things that he has gotten his hands on and dumped out.

So knowing the types of Sensory Modulation is all fine and dandy. But what can be done to address these problems?  That is where the Sensory Diet comes in.  An occupational therapist can assist with putting supports in place to help with this.  In a typical day we all strive to stay at a certain level of function where the keel sails evenly through the water.  Not too hyped up or sluggishly dragging, right?

If a person is under-responsive it is necessary to include “alerting activities” which will give them a boost.  These might include bouncing, jumping, hanging from monkey bars.   In Nick’s day he may need to take a motor break and go jump on the trampoline or get on a swing to rev him back up.  Using a special nubby cushion can help keep a person alert while working at a desk.

“Organizing activities”  can also help a person who is having trouble attending to a task.  For some people it may be deep pressure or heavy work that helps.  Others may need something more oral motor related.  “Calming activities”  help decrease the sensory over-responsiveness and might include deep pressure, joint compressions, massage, gentle rocking, rhythmic movement, taking a bath, muted light, etc.  Bottom line, it depends on the individual. Some senses may/or may not be more sensitive than others.  The parent can do some detective work to see what is needed and how their child reacts then work with an occupational therapist who will tailor a sensory diet to fit their needs.

Here is a list of heavy work activities/proprioceptive activities that may help regulate a child’s arousal level, concentration, ability to sit still and attend to a task or fall asleep.

Gross Motor Activities:
Carrying objects such as groceries, animal backpacks, a fanny pack, stacking or moving chairs/books, and a full watering can/hose, basically ANYTHING with weight to it.

Thanks Kendra Convery, (Nick’s OT from California) for sending this picture of Nick in the balls. Isn’t he cute 🙂 A ball pit can awaken the senses and provide good input on their body position and balance (which addresses proprioception and the vestibular processing.)   

Deep Pressure ideas:
Wearing a weighted vest, weighted hat, or weighted shorts, wearing wrist or ankle weights, using a weighted pad on lap or across the shoulders.  It could also be something like a long door draft or even a toy snake…….


Pushing or pulling objects and activities:
Toy/regular shopping cart, laundry basket, kid’s wagon, raise/lower flag at school, tug of war rope, toy/regular vacuum, wrestling, hippity hop ball.


Sandwich/ Squishing activities:
Make a child “sandwich” between floor pillows, cushions or bean bag chair, roll child up in mat or heavy blanket as a “hot dog” – bear hugs.

Siblings and pets make great deep pressure and wrestling pals…..

Nice stereo system….. and all those cases filled with my fitness cassettes 🙂

Oral Motor Activities:
Resistive sucking using items such as through thin curly straws/krazy straws – sports bottle with long straw, lollipops, blowing bubbles, sour/citrus or salty flavors can alert the mouth.

We all have aversions certain senses. It might be something tactile like tags on clothing that personally drives me nuts.  Tactile issues can be addressed with the Wilbarger Protocol technique (most known as the brushing program.) Many parents of children with autism have reported that their children have responded positively to the Wilbarger Protocol technique.  This is a brushing program that should be administered by an occupational therapist.  Reports have shown a reduction in sensory defensiveness, as well as improved behavior and interaction. Many adults with autism have also reported reduction in sensory defensiveness, decreased anxiety, and increased comfort in the environment through the use of this technique.

We did this program with Nick for many years when he was little….

Certain textures may be unpleasant or down right unbearable.  Personally I can’t stand anything globby and lumpy like tapioca pudding, cottage cheese and flan….. blech!  My sister in law, Ali cringes at anything in the green slimy family like olives, artichokes, avocados, anchovies or hearts of palm. So what is it that you can barely tolerate?  Is it tactile, a certain smell or noises? Do you love loud music or does it overwhelm you? Do you sprint to the roller coaster rides or shy away from them?

The faces say it all…. Hank looks like he is facing the jaws of death up front while Nick is experiencing pure joy!  The rest of us are somewhere in between.  That’s Ali and my niece Anna in the back on the Splash Mountain ride….. 🙂

Is there a type of clothing that you are sensitive too? What calms you….. any certain genre of music, exercise, maybe the sound of a fountain? I would love to hear from you on this.  I plan to write another story closer to the holidays when we are all bombarded by stimulus overload.  I hope this week you gained some insight into how the senses are such a huge part of how we navigate the world.  That’s what is in my noggin this week.  Take a look around your world and let me know what you see that overwelms you or helps to keep you calm. You can e-mail them to me at: tjunnerstall@comcast.net.  Cheers and see you next Monday!

~Teresa

****** News flash********** OOOOPS he did it again.  #27 Fire alarm pull over the weekend in the hotel at the NADS Retreat. 

It was like a land mind in the corridor of that hotel, how could ne not resist…. and speaking of the ultimate sensory seeking…. yup that would be Nick’s….. The rest of us are just trying to keep up! 🙂

Posted in Autism, Behavior/ ABA, Speech and Occupational Therapy

Blog #29~Curious Stims

Posted on by Teresa Unnerstall

Blog #29~Curious Stims

Stimming is awesome, admit it we all really enjoy it!

Now that I have your attention I thought I would share a little bit about Nick’s world and what turns him on.

So just what is stimming? When you see someone like Nick who might be rocking and bobbing, tapping and making odd noises you probably look over and think “What the…?”  I dedicate this week’s blog to the need to stim! Here is a good explanation from www. About.com/autism spectrum disorders:

What Is Stimming and Why Is It Common In Autistic People? 

Answer: The term “stimming” is short for self-stimulatory behavior, sometimes also called “stereotypic” behavior. In a person with autism, stimming usually refers to specific behaviors such as flapping, rocking, spinning, or repetition of words and phrases.

Stimming is almost always a symptom of autism, but it’s important to note that stimming is also a part of most people’s behavior patterns. If you’ve ever tapped your pencil, bitten your nails, twirled your hair, or paced, you’ve engaged in stimming.

The biggest differences between autistic and typical stimming are the choice of stim and the quantity of stim. While it’s at least moderately acceptable to bite one’s nails, for example, it’s considered unacceptable to wander around flapping one’s hands. There’s really no good reason why flapping should be less acceptable than nail biting (it’s certainly more hygienic!). But in our world, the hand flappers receive negative attention while the nail biters are tolerated.

Like anyone else, people with autism stim to help them to manage anxiety, fear, anger, and other negative emotions. Like many people, people with autism may stim to help themselves handle overwhelming sensory input (too much noise, light, heat, etc.).

Unlike most people, though, individuals with autism may also self-stimulate constantly, and stimming may stand between them and their ability to interact with others, take part in ordinary activities, or even be included in typical classrooms. A child who regularly needs to pace the floor or slap himself in the head is certain to be a distraction for typical students.

It’s not completely clear why stimming almost always goes with autism, though it’s often called a tool for “self regulation.” As such, it may well be an outgrowth of the sensory processing dysfunction that often goes along with autism. At times, stimming can be a useful accommodation, making it possible for the autistic person to manage challenging situations. When it becomes a distraction or causes physical harm to self or others, though, it must be modified.

Lessening or modifying stims can be tricky, but several approaches may be helpful. Applied Behavior Analysis (ABA) may help individuals to eliminate or modify some of their stimming. Occupational therapy is another useful tool.

In some cases, stimming can be reduced with medications that address underlying issues of anxiety. Finally, some people with autism can learn through practice and coaching to either change their stims (squeeze a stress ball rather than flap, for example) or engage in excessive stimming only in the privacy of their own homes.

We try to limit the stim activities to home.  But we respect Nick’s need to manage the excess sensory input that comes into his world.  He will always grab up a few things for a car ride but knows that they need to stay in the car once we reach our destination.

Here are some of Nick’s “tappers” that he raps against his mouth.  The foam pieces are much quieter.

The Bloody hand is joining Nick for dinner 🙂

Here Nick enjoys a small music toy that lights up.  Notice the basket filled with more stim toys and guess who that is on the floor in front of Nick’s feet?

That’s right Yukon Cornelius….. “Sil-ver!”

Nothing beats a good time for Nick than a doorbell…..ding dong, ding dong, ding dong…..ha, ha ha!  🙂

At school he is given down time after his work sessions.  Here are some of Nick’s favorite stims at school. The first one is a small baby toy that is totally not age appropriate. But toys such as these are like that stuffed animal or woobie blanket we hold onto for some reason. Nick likes the music and dances with it.  It also serves for tapping.

Here’s another one he enjoys.  The frog sings “Celebrate” and there’s a party going on right here for Nick…….

This is a new acquisition.  The rat wheels across the table and floor when you pull his tail/string.  Nick loves this and enjoys pulling the string and listening to his ear…….

And of course the good ole stand by that has stood the generations of time……

Who doesn’t love a good Whoopee cushion?  🙂 I buy them anytime I see them at Walgreens and now they make them self-inflating!

Last but not least, his favorite go to stim is a can of tennis balls, tap, tap, tap and he is a happy guy 🙂

The need to stim is part of our nature.  A classic example is my brother.  Tom’s legs would rock back and forth while his hand was on the helm during a sailboat race.  The tighter the race, the faster those legs banged together.  My Mom never forgot the Carefree bubblegum otherwise he would chew the inside of his cheeks raw.  Those were his coping mechanisms to stay calm under pressure. What is your stim of choice, whether it is to keep you calm or to rev you up?

I hope this gives you some insight into the sensory world that is complex and fascinating.  Perhaps when you see a person with autism exhibiting these behaviors it will make more sense to you.  That’s what is in my noggin this week. And remember there is nothing wrong with a stim or woobie blanket to help us cope in a world that can be chaotic!  Just ask Nick………

This is how he tunes out the barrage of political ads……

Linus has it figured out too……

~Teresa

******News flash for those of you keeping score at home.  The fire alarm count is now at 26 pulls! Nick decided to put the “trick” in trick or treat on Halloween.  Yes, it’s Nick’s world, the rest of us are just trying to keep up!

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #28~ Halloween Costumes and a Special Needs Child

Posted on 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….

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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!

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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

Posted in Autism, Behavior/ ABA

Blog #27~ Everything in its Place

Posted on by Teresa Unnerstall

Blog #27~ Everything in its Place

Confession…… I admit that I like things orderly in my home.  When the piles of papers start stacking up to avalanche levels it makes me antsy.  I have a few quirks that might make me borderline OCD.  The labels of every can in the pantry are turned perfectly straight and all of the towels have to hang neatly on the rack.   I can’t stand it when someone moves a piece of furniture and creates a new divot in the carpet. Yes, I have a thing about the carpet marks (more on that and the need to feel in control in Blog #1.) Okay maybe the CD collection is in alphabetical order (hey, it’s easier to find them that way.) And don’t even get me started on the autumn leaves that keep trickling into the house every time someone opens the door.

I don’t consider myself a neat freak.  I have no problem letting the folded laundry sit in the basket for several days.  I have to be in the mood to put it away or someone is about to run out of underwear or socks. 🙂  So I suppose my son, Nick comes by some of these traits naturally.  Though often I wonder how much of that is from my gene pool or autism.

Last week the monthly cleaning people were here and inevitably I have to readjust the angles of all the picture frames and knick-knacks to my liking.  Nick follows suit when he gets home from school in his bedroom.

The cleaning people’s arrangement…..

Nick’s arrangement…..

It’s not just when the house gets cleaned.  Recently I bought a new rug for the bathroom. Sometimes Nick’s “aim” is a bit off and I wanted to protect the wood floor.

Nick will have nothing to do with that rug.  There has never been a rug in the before.  Every single time he goes in there he takes it and throws it down in the laundry room.

“Hey mom, this is what I think of the new rug”……

Where I put Nick’s backpack….

Nick says “No way it goes here”……

Sometimes I try to shake things a bit just to get him to loosen up and stop being so rigid.  For instance yesterday, I couldn’t face eating Taco Bell for lunch.  I decided to make a visual to show a change in the schedule.  I really wanted a fresh sandwich and an iced green tea at Panera bread.  Okay maybe I wanted a pumpkin cookie too 🙂

The cookie was not as good as I thought it would be. I took a few bites and threw the rest away.

I prepped him by looking over the visual a few times before we went to the mall.  We came into a different door on the end of the mall where Panera is located.  I pointed saying, “First getting Mom a sandwich, then Taco Bell- yay!”

By the way why is the Board maker icon for the mall always pink?

Nick and I entered Panera Bread.  He was hesitant but tolerant as I placed my order.  We proceeded through of the restaurant.  That’s when he began to dig his heels in. I pointed to the visual task strip and reviewed the plan.  He trudged as I lead him down to the counter full of heaving bowls of hot soup in bread bowls.  Nick was noticeably agitated. His hand took ahold of my left jaw and clung on. I pulled myself into him to release the grasp while acting as if nothing was wrong. “Nick it’s okay, Mom’s sandwich, then Taco Bell.”  He pinched his cheeks really hard and let out a few expletives. I shifted him away from the counter hugging him and praying they could make that sandwich as fast as Jimmy Johns.

It was no use. Nick was beyond reason as he clawed at my cheek gouging into my skin.  I could feel a sting as I pulled him closer to me trying to give him a deep pressure hug. It was a last ditch effort to calm him. Finally the order was ready and I said, “Nick look, Mom’s sandwich….all done, Taco Bell.”  While I made no eye contact, I could feel the patrons glaring at us as we walked out. Outside in the atrium I grabbed my sore jaw that had been sucker punched.  I took my hand away I saw that it was covered in blood.  No wonder they seemed to be staring more than usual.

There it is a snapshot of autism.  Not a pretty picture is it?

In a perfect universe Nick’s world would run the way he sees fit and everything would be in its rightful place. He needs to feel in control and the order and sameness gives him that.  But that’s not how the world works.  I have to prepare him for things to be different.  Yesterday didn’t work out so well.  He perceived the walk into the bowels of Panera to mean that we were staying there. So I will have to go back to the drawing board and rethink how I want to approach it next time…..or just eat Taco Bell 🙂  It’s a complex puzzle and sometimes the pieces just don’t fit.

That’s what is in my noggin. Cheers to a smooth week ahead.  Until next Monday may all of your *knick-knacks stay in a row to your liking!

~Teresa

*Knick-knack According to the Phrase Finder means a dainty little trinket or ornament.  Knick doesn’t mean anything in itself in this term; it is merely a reduplication of knack. We now use knack as meaning ‘a dexterous facility’, but in the 16th century it was used to mean ‘an ingenious contrivance; a toy or trinket’, and that’s the sense that was used in knick-knack.

Shakespeare also used it in The Taming of the Shrew, 1596~ “Why ’tis a cockle or a walnut-shell, a knacke, a toy, a tricke, a baby’s cap: Away

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 Behavior/ ABA, Fun Side of Nick

Blog #25~ About those 25 fire alarm pulls….

Posted on by Teresa Unnerstall

Blog #25~ About those 25 fire alarm pulls……

It seemed fitting for Blog #25 that I expand on the 25 fire alarm pulls that Nick has craftily gotten a hold of since third grade.  I touched upon this a bit in Blog #10~Nano second which chronicled a week of Nick’s charades of wreaking havoc.  Most of the pulls have occurred in the school setting.  While it clearly states in his IEP to both cover and carefully monitor Nick around all fire alarms this still hasn’t stopped him. By the way, just because an alarm is covered doesn’t mean he won’t try and lift it up.  But at least the cover will buy you a few extra seconds. Most of the questions I get have been these…. Why is he so drawn to them?  How can he be so fast? And finally…How does the fire department and staff react once he pulls one?

If you have read any of my other posts it is clear that Nick likes to grab you attention by doing all kinds of things like pushing buttons, dumping out all sorts of things, burping, farting you name it he does it.  The Holy Grail is always going to be the fire alarm.  I mean think about it.  That is a big payoff.  There is a scurry of people exiting the building and the fire trucks come with lights flashing and sirens blaring.  How cool is that? 🙂

The last alarm he pulled was exactly a year ago.  Interesting how he can smell fresh blood and that is when he makes his attack.  Anyone new just starting to work with him will most likely go down.  I spoke to the new school aid that had fallen victim to #25 when I dropped Nick off at the Halloween dance last year. He was still beating himself up felt mortified…….Poor guy.

One of my friends sent this message after the Nano Second blog post #10. “Having been the victim of Nick’s nanosecond skills, I can offer one morsel. He achieves his speed by help of his poker face while plotting (don’t often think of Nick’ mind racing but I believe it does) and sometimes in steps. I saw him try to 2-step me with your hat. First a small move inching the hat 2 feet closer to him on the table, with those innocent eyes.  Then he swooped in ready for the 25 footer Frisbee toss.”

He is fast!  The last time he got me was three years ago at Dominick’s.  (Just so you know he has only got me twice. Al has yet to get caught but he was almost burned by Nick in a very packed Houston-IAH Airport the day after Christmas. The alarms are painted silver, whut?  Nick grazed it but his Dad was able to swipe his hand away.)  So, back to Dominick’s…..

In my defense it wasn’t the usual one I shopped at plus I was wearing one of those bulky  therapy boots on my right foot which had suffered a plantar fasciitis tear.  Minutes before this happened Nick was carefully taking the items out of the grocery cart and placing them on the conveyer belt.  The cashier smiled and gave a compliment on what a good helper he was.  I always have Nick push the cart so he is occupied while in the store.  That’s when it happened.  Suddenly, he stopped, released his hands and made a beeline to one.  I hobbled behind him and made a last ditch leap stretching my arm like a defensive back trying to block a touchdown pass.   “Nooooo Nick!”  But it was too late.  His fingers clutched the switch just as my hand touched his wrist.  What followed were flashes of lights and an earsplitting sound that could break glass.  All of the patrons stopped and cover their ears.  I glanced over at the courtesy booth and saw the store manager throw his hands in the air and shake his head.   All I could do was shrug my shoulders and mouth one word “sorry” as I pointed down at the offender.  Nick was frozen in a trance like state; his eyes as big as saucers.  While he stood motionless; his whole body was trembling.

I knew I had to get him out of there fast as the excitement was fueling him like a crack head junkie.  The rain was falling on that cool autumn afternoon as we made our way to the car.  I got him belted in, put the grocery bags in the back and waited for the fire truck.  You see, even if it is a false alarm the firemen still have to come and investigate.  As Aurora’s finest came blazing in, I limped across the parking lot, drenched from the rain to make my apologies.  I saw two firefighters entered the store no doubt to deal with the scene.  Sheepishly I spoke to the other two who waited in the truck. I explained that Nick had Down syndrome and autism and a passion for pulling alarms. They didn’t say a whole lot but seemed to understand.

Over the years I have asked various fire fighters about someone like Nick who gets a charge out of pulling alarms.  Most of them hardly blink an eye. Last weekend while Nick was helping with a fundraiser for the Peer Buddies program a few of Aurora’s Fire Fighters stopped to give a donation.

As they put money in the tin can I commented, “Hey Nick really likes your fire truck he has been eyeing it since we got here. Oh and he really likes fire alarms too, all 25 of them that he has pulled since third grade.”  One of the guys busted out in laughter and gave Nick a high five!  A few minutes later, they drove their truck right by us with sounding the horn, sirens and lights.  Nick was in heaven! 🙂

I have to give a shout out to these guys and share a few pictures 🙂

Nick helping out with the siren testing at the Duck, NC Fire Department…….

“Wow this is awesome”

Nick collection of tee shirts…..

Thanks to my friend Veleen for sending Nick this one…..

So, here’s to the brave and kind *fire fighters! That’s what is in my noggin this week. Until next Monday why don’t you take a look around at all the alarms in the community?  I bet you’ll see how accessible they are and think….Gosh Nick could get that easily…..and smile. 

~Teresa

* “If Prometheus was worthy of the wrath of heaven for kindling the first fire upon earth, how ought all the gods to honor the men who make it their professional business to put it out?”   ~ John Godfrey Saxe

 

Posted in Autism, Down syndrome, Education and Special Needs

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

Posted on 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

  1. Determine a method to communicate with the staff (communication notebook, email, daily reports.)
  2. 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.
  3. Get everything down in writing in the IEP (from a 1:1 Aid to the chewy sensory toy.)
  4. I am not a bad parent because my child won’t keep gloves on/ or has a meltdown in school.
  5. Sometimes the parent has to be the one to rattle the cage.
  6. Get help when you need it (support groups, workshops, trainings, respite care, etc..)
  7. Know your rights, Read Wrightslaw.
  8. Don’t settle for just any solution if a problem
    doesn’t get better. There is always a better way.
  9. Sometimes as a parent you have to let go of your own dreams for your child so they can move down a different path.
  10. 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.