Tag: Down syndrome

Posted in Fun Side of Nick

Blog #40~Say It’s Your Birthday

Posted on by Teresa Unnerstall

Blog#40~Say it’s your birthday…

“You say it’s your birthday
It’s my birthday too–yeah
They say it’s your birthday
We’re gonna have a good time
I’m glad it’s your birthday
Happy birthday to you.”

Beatles birthday

It’s a silly thing we do…… singing this Beatles tune when calling certain people on their birthdays.  Speaking of which, this week two of the Unnerstall men have theirs.  Al is hitting the big one on Wednesday.  That’s right the big 5-0. 🙂  On the exact day that you turn 50, the AARP card application magically shows up in the mailbox. I proceeded to tear it up and to this day still toss them in the trash. But Al plans to embrace it fully to the extent that will make them go bankrupt.  On the evening of Feburary 6, 1994 I went into labor a week earlier than my due date.  I honestly thought I might have the baby on Al’s birthday.  But like his brother, Nick took his time and so he was born the following day. He was 6 pounds, 14 oz. and was 19 inches long. I gained exactly 19 pounds with this pregnancy.  Nick will be 19 years old on Thursday. 🙂

Here is a look at some of Nick’s birthday celebrations.  What a journey it has been.  Nick’s first birthday was celebrated with my side of the family and with my friend, Sally’s family.  Nick has very low muscle tone and you can see that my mom had to hold him with support over the cake as he blew out the candles.  At this point he was sitting up but far from being able to crawl very far much less pull up to stand.

A single candle on the homemade chocolate cake.  Hank is close by on the right.  Oh, my bangs are hideous…

Teresa Unnerstall 001 (2)
It wasn’t until Nick was 3 ½ until he was able to walk on his own. Here he is at the Arbor School in Houston celebrating his fourth birthday.

scan0012

We relocated to the East Bay area outside of San Francisco. Many of the celebrations were simple. This is a sad little cake. It’s pathetic as Hank would say. I am ashamed I made that.

Hank holding his brother’s hands so he won’t flap them by his ears…..

scan0001
So much for that 🙂

scan0007

He is sooooooooo excited! He is going to town stimming those hands by his ears. Looking back I see it; a trait of autism.

This is more like it. A homemade yellow cake with chocolate frosting that Hank and I made.  In case you were wondering I don’t have any formal cake decorating training, shocker right 🙂

Nick turns 6!

scan0002

Here’s Al at age 6, sporting a short cut like Nick…..all together, aahhhh he’s so cute…..

scan0003
We moved to the Midwest and Nick celebrated his 7th birthday in style with a legit cake and the party theme was Thomas the Tank Engine.

scan0004
At school for his 8th birthday, Nick got a special lunch with a Happy Meal. Looks like it is working….what a happy guy!

scan0005

The following year the birthday boys celebrated together with Al’s folks Jim and Theresa on Super Bowl Sunday. Best part of the day was the opening kickoff that Devin Hester ran back for a touchdown.
devin hester
Unfortunately, Da Bears came up short. But it looks like the birthday boys got some nice presents.  Nick is really growing and rocking that Brian Urlacher jersey!

scan0006

Nick’s got to get more lung power for his 17th, whew…..

109

Big breath now you have 18 candles to blow out..Big guy’s got this!

024

I hope you enjoyed this little taste of the boy’s birthday celebrations.  Common theme seems to be chocolate cake in all shapes and sizes. What a contrast from the low tone baby 19 years ago to present day.  My good friend April G. always says, “Funny thing if you feed and give them drink, they will grow.” Nick has done that in his own way and pace.  Not always in the time frame I had invisioned for him. But he did, and I couldn’t be more proud. That’s what is in my noggin this week.  Happy birthday boys and cheers to many more.🙂  Have a great week everyone and may your cake be full of candles this year and for many more to come!

~Teresa

Posted in Down syndrome, Physical Therapy and Special Needs

Blog #37~ Just Do It!

Posted on by Teresa Unnerstall

020

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….. 🙂

Nick 2 (2)

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.

slo mo ball

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.

1205001656

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…….

  1. Get medical clearance before starting any exercise and dietary program.
  2. 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.)
  3. 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?)
  4. 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!
  5. 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…
  6. Use it or lose it.  Did you know you start to lose training effects after just 48 hours of inactivity?
  7. Don’t obsess with the number on the scale. I always say your jeans don’t lie!
  8. 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.
  9. 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.”
  10.  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!

photo (115)

~Teresa 🙂

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……

photo (117)

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……

scan0002

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…

scan0001

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.

stuff on my cat post its

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…… 🙂

scan0005

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

scan0004

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.

photo (121)

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….

photo (112) 

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

photo (108)

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

photo (118)

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

photo (123)

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

002

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!”

photo (119)

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

photo (116)

Meow to the Easter Kitty…..

mellie with ears

Mellie stoned on Christmas cat nip…..

024

 

IMG951590

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….. 🙂

0516091435

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….

. 

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!

photo (109)

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 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.

 

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #21~ What Is Normal?

Posted on 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.

 

 

 

 

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

Blog #20~ Is That Age Appropriate?

Posted on by Teresa Unnerstall

Blog #20~ Is That Age Appropriate?

Yesterday, I ordered Nick’s senior portraits online with the sound of Thomas the Tank Engine in the background. Sometimes it feels like I am living with a perpetual three year old. It got me thinking about some of the toys, music, and DVD’s we have weaned him off of in order for him to be more age appropriate. Yes, he is still drawn to some of that stuff.  Last week, we were in the waiting room at speech therapy and Nick grabbed up a Fisher Price musical toy. A couple of four and five year olds looked at him oddly as he towered over them swaying side to side to the song Twinkle, Twinkle, Little Star which blared out of the toy with blinking lights. That is Nick’s idea of heaven. I had a flashback to seventeen years ago of the special needs support group meeting back when we lived in Houston.  The guest speaker was a mother of an eighteen year old who had Down syndrome.  I still remember her words in that sweet Texas accent, “What looks cute at age three is not going to be at age thirteen. She was right, I get that now. I asked him to give me the music toy so he could go in with his therapist, Brian. Suddenly he let out two words clear as a bell…..”Oh shit”…. now THAT was age appropriate.

I spent a lot of time over the years researching toys and activities that would enhance Nick’s development. There are several resources listed on my website.  Just the other day I stumbled upon a great site for age appropriate activities broken down in age groups.  Check it out at http://life.familyeducation.com/child-development/activities/63988.html.    One of my favorite bloggers is Noah’s Dad, he has his finger on the pulse regarding young babies and children with Down syndrome, check him out at: http://noahsdad.com.  He offers a wealth of information, links for great toys for younger kids and Noah is absolutely the cutest thing. One more note regarding age appropriateness for our kids with special needs, take pause in what the age level of manufacturer’s label states. It’s important to look at the developmental age of the child.  For instance, if the child is ten years old and functioning like a six year old, it would be wiser to pick a toy that fits their functional ability. Bottom line, you want your child with special needs to enjoy the toy and not be frustrated.  Autism and frustration is never a good mix!

As a mom, you want your child to fit in.  I can’t control the behaviors of my son that make him stand out in public (hand flapping, rocking, and loud noises that sound like a baby calf mooing.) But I can make sure he is dressed stylish and that he won’t be walking around with a baby toy that will make him stick out even more than he already does. In addition we ditched the Dynavox (aka “The Brick”)  that was his speech output device.  It was too big, bulky and not functional out in the real world. It has been replaced with an iPod touch chat program.

The old school CD player with nursery songs is long gone too…….

Nick had his own playlist at age 5…..

Look at that yoga boy…. so bendy 🙂

So here is the current state of Nick and trying to keep the cool factor going…..

Nick’s iPod playlist= It’s everything from Lady GaGa to LMFAO and in between including some gangsta rap that his brother, Hank got him hooked on.

Nick’s top movie picks= Mrs. Doubtfire, Little Man, Cats and Dogs, Stuart Little, Babe, and Cat in the Hat.  But he really digs anything with Eddie Murphy- Dr. Doolittle, The Nutty Professor and Norbit! 🙂

While I think Nick would be perfectly happy staying with the kiddie stuff, I have this longing for normal.  I wish he could play Wii/ X-Box video games and Angry Birds like other teenagers.  But that is my dream not his.  I have to remind myself to find a balance.  I need to remember the things that bring him happiness, resonate and connect the “dots” for him. Much like that furry, stuffed animal or blankie we hold onto from childhood, Nick still longs for some of those simple toys and watching Thomas the Tank engine every once in a while to make him feel secure. At home we allow it. He is safe with his friends Thomas and Harold the Helicopter.

 Today, naughty Harold made the cat’s head his landing strip, flipped the light switch repeatedly…hardy har har… and proceeded with some “*Tomfoolery”  at the stovetop….  

Soar high Harold……he rocks Nick’s world 🙂

Age appropriate no, but sometimes it’s kind of fun to not act your age.  That’s what’s in my noggin, until next week have a great Labor Day my friends.

~Teresa

*According to Randomhouse.com *Tomfoolery is foolish or silly behavior. A tomfool was originally Tom Fool, with Tom, a nickname from Thomas, being a stereotypical male given name. Tom Fool is thus a sort of fourteenth-century equivalent of our modern Joe Cool. As a (fictitious) proper name, Tom Fool is first recorded in the fourteenth century; a sense ‘a person who plays the part of a fool in various dramas; buffoon’ appears by the seventeenth century. The generic sense ‘a foolish person’ is first recorded in the early eighteenth century.

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

Blog #18~ A Cut Above The Rest

Posted on by Teresa Unnerstall

Blog #18~ A Cut Above The Rest

Haircuts are no fun with Nick, period.

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

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

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

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

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

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

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

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

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

Mr. T rocks…..

Big guy shaving……

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

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

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

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

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

~Teresa 🙂

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

 

Posted in Down syndrome, Recreation/Leisure and Special Needs

Blog #17~ Life’s a Beach

Posted on by Teresa Unnerstall

Blog #17~ Life’s a Beach*

Drip, drip drip… Last Wednesday morning we were met with nothing but grey skies and the sea blending as one. It put a damper on the day in which we just wanted to bask in the sun and splash in the water. The rain tried to beat down our souls.  But all we had to do was crack open the patio door and hear the waves.  There is something about the ocean that energizes and grounds me all at once. Here is a favorite quote of mine…..

“Why do we love the sea? It is because it has some potent power to make us think things we like to think. -Robert Henri

What is it about being by the water that awakens a person?  For as long as I can remember, Nick has loved the water. Nick is 18 and has Down syndrome and autism.

Nick age 5 with his Dad, Al……

Too Cool, by the pool, Nick age 14 at the NADS Behavior Retreat….

Nick heading to swim class at MVHS….

The thought of getting Nick to actually learn to swim seemed impossible.   I enrolled him in lessons with the special recreation department where we met Mary who had been teaching for over 30 years.  She had a no nonsense approach and Nick knew she meant business.  About 5 years ago she got him to go underwater and dive for pool toys.  Seeing Nick swimming was amazing.  He looked like all the other kids in the pool. No longer was he the boy that sat in the shallow end stimming with a cup.

A few years later I started private lessons in her backyard pool out in Batavia.  Her task was to coordinate the arms and legs together. Mary put flippers on Nick and suddenly he could feel the kicking sensation that propelled him faster across the pool.

The following summer he was syncing up the movement without the flippers and heading into the deep end.  It was magical!  His technical skills are far from Michael Phelps, but he can do a mean doggie paddle.  Most importantly, he can make it across the pool without sinking.

No flippers or flotation devices….Go Nick!

This is our third year to go to the Outer Banks of North Carolina, (simply as OBX here.)  It is a crazy strip of land known as a sandbar that rose above sea level.  Just turn the knob to Bob, radio 93.3 and chill.

OBX Beach time 2011~Hank, Sam and Nick…..

The house we stayed at has a private pool and the beach access. Nick isn’t crazy about the texture of sand, but we continue to push him out of his comfort zone.  It is important to get him out in the world.  If we don’t then his world and ours will become too narrow.

Here is a bird’s eye view much in the movie “Rear Window” of our back yard here in the OBX….

A walk down the beaches of the Outer Banks is a greeting of many characters.  Floppy hat ladies in low slung chairs reading books. I wonder how many are reading Fifty Shades of Grey (or as my writer friend, Marcia F. calls it “Mommy Porn.”) A glance to the ocean you find the sporty types throwing Frisbees, footballs or out on the water kayaking, paddle boarding, body surfing and skim boarding.  Joggers dot the edges of the shoreline in varied stages of serious (with headphones and shoes) and casual barefoot walkers simply taking in the day.   Sandpipers scamper across the sand and ghost grabs burrow and pop up from time to time.  Gulls and pelicans glide across sky in seemingly perfect formation. Umbrellas act like rainbows adding pops of color across the coastline and the fisherman patiently wait for the catch of the day.

Al with Ron, my brother in law, his happy place….

The Outer Banks may be a narrow strip of beach but it offers up a large slice of chill time that brings families together and fills up the photo album with wonderful memories.  I love this beach quote!

 “Our memories of the ocean will linger on, long after our footprints in the sand are gone.” –Anonymous 

The sun did come back out.  I sat on the beach thinking about life.  It isn’t always smooth as when the full moon casted its glow over the quiet waters the night before.  The waves can get rough when navigating a child with special needs. Especially during vacations, when they are out of their element. But I am not going to let my world with Nick close in on me.  Like the ocean that has no boundaries I plan to keep pushing out to the horizon. That is what is in my noggin this week.  Until next Monday, may your life be a beach!

~Teresa

*There is no direct origin for this phrase “Life’s a Beach. But Word Reference.com says this about the quote, “Although the expression ‘life’s a beach’ may have originated as a pun for ‘life’s a bitch’, it’s also a statement on it’s own, that life is not a bitch at all, rather, life’s a beach. It signifies that the wearer views life as a pleasant beach – sun, surf, relaxation…