Posted in Autism, Fun Side of Nick

Blog #13~Take 1, Take 2, Take 3…. oh just keep snapping!

Over the years, the process of getting a clean shot of Nick in a photo has never been easy.  Three things have to happen.  First you have to get him to look into the camera with eyes fixed and not flat.  Then, catch his smile.  Oh and while along try to keep his hands from flapping around his ears.  Nick when excited about something can do some serious flapping…..

Yes I can…

It’s my brother’s birthday I’m gonna flap if I want to… Happy Birthday Hank!

Most of the family photos appear angelic as we have our arms coiled around him lovingly.  Actually this is a desperate attempt to control the hands flapping!

Unnerstall Family photo….

I love getting the Christmas cards from our fellow dual diagnosis friends and their families.  It is always a mirror image of those wrapped arms that appear to be peaceful and in control. Oh wait there are more……….

Mom and I trying to get Nick to look at the camera for a Rodger’s Family photo…

Oh what a sweet picture of Jim and Theresa with the grandchildren… note the gentle holding of Nick’s hands while calmly looking into the camera….

Mount Diablo in Nothern California… Their faces say it all…

“I know that all my cousins are looking straight ahead at the camera, but  I am look away Nick!”….

Poor Hank, I can’t tell you how many pictures he and  our family have endured  patiently sitting and smiling while waiting for Nick to maybe look into the camera and smile.

Nick says…”Who needs Santa, this hand flap is way better.”   Gotta love Santa’s gaze at him.  

How many school pictures of Nick have been re takes?  Uh ya… all of them!

We call this one “Off-Centered Nick” but it’s a rather cute shot (2nd grade)

Which brings us to senior portrait time, oh my.  A lot has changed since my high school days back in La Porte, Texas.

Back then, they only offered two shots. (That sounded like an old person speaking didn’t it?)  I remember being bummed that we didn’t get to do the pose like Mom had.  Even the graduating classes two years before me did.  You know the one with the fluffy white feathers that hit just above the bare shoulders.  I couldn’t wait to see myself  like this….

Mom rocking the feathers…

My ’79 graduating class got stuck with the casual street clothes look,  fake green ficus creeping over the background  and a lame tree trunk covered with lichen. Not quite the same is it?

The second shot was the with the conservative gray background and traditional cap and gown.  These days it is a complete photo shoot with multiple backgrounds and wardrobe changes including props such as a band instrument or sporting equipment. Which leads this story to the present tense and Nick who had his senior portraits taken last Friday.

Several things need to happen to pull such a feat off.  First besides the top three items that I listed above is timing.   I made sure to block an hour shoot rather than 30 minutes to allow for Nick to transition and in case he needed a break.  With Nick’s hair that grows like Samson……  timing is everything. Oh and the stars need to be in alignment.

This would be too late…..

So, we arrive at the studio complete with my bag full of things to try to get Nick to look at the camera. And the task strip that had icon pictures of camera, smile, wait, smile, all done and then of course the big reward at the end…. ta da!

Double thumbs up.. yes!!!!!!!!!!!!!!!!!!

I told the photographer that he had a limited number of money shots.  Just keep snapping… and he did. Between the photographer, Hank and I engaging in countless sound effects, silly toys like whoopie coushins, fake burps sounds, slap stick humor and yes…..two wardrobe changes and five different backdrops we might just have a few keepers.   We’ll see how the film rolls in a few weeks.  Funny how such a simple thing like having your photo taken can be such a process and wear on you and your whole family.  These things are never easy with Nick.  But somehow in the midst, there usually is a nugget you take with you.  It’s a tiny bit that stays in your memory bank that brings a snicker and smile…..

That’s what is in my noggin this week. Until next week may you find those little nuggets of happiness and say cheese…..  and don’t forget to flap your hands!

~Teresa

Posted in Down syndrome, Fun Side of Nick

Blog #12- Daddy-O

Daddy-O

Blog #12- Daddy-O

Three years ago I stood in the card isle gulping back a lump in my throat.  It was the first time I would not be picking out a Father’s Day card for my Dad.  I still miss him dearly.  He was an accomplished man, a Fulbright Scholar, chemist, sailor, and all around witty guy.  I was guided by the best.  I could always talk to him about Nick and he would quietly listen and nod. My son Nick has Down syndrome, and was later diagnosed with autism.

 My Dad and Nick….

My Dad was known to the grandkids as Paw Paw, floor time fun with Nick and his cousin, Austin…

I have been blessed to not only have the guidance and love of my Dad, but also from my Father in law.  Jim has always had my back and continues to be the rock as well as the voice of reason.

Grandpa Jim and Nick….

 Jim is know by the grandkids as GPA…..

And then there is Nick’s Dad.  Al helps me keep things on an even keel. He can lighten the mood with a joke when I take things to seriously. 

Here is Al’s perspective of being Nick’s Dad:

“When Teresa asked me to be a “guest blogger” this week, the topic was very interesting … Being Nick’s Dad.   Just to start off I’ll tell you there is never a dull moment around our house.   With Nick, the house is fully energized.  Yes he does chill but when he is on his game, you can never really relax.  Nick in “high motor” is always searching for the next thing to do, whether it’s an appropriate behavior or not.   There are things we do in our house because of Nick that most families I would gather don’t do … or for that matter would ever imagine doing.   I think back to one morning I had my boss in town and I was just running a few minutes late trying to get out the door to go pick him up at his hotel.   As I reached up on top of one of our cabinets to grab my car keys, they were intermingled with our cellphones, Teresa’s car keys and maybe a wallet.   You see, those important things stay out of Nick’s reach since he will set off the car remotes or they end up in the toilet.  Anyway, as I am trying to find my keys I grabbed whatever I could and a multitude of keys came crashing down off the cabinet nailing me right in the face.   I looked at Teresa, smiled wryly and said “I’m sure everyone has to go through this to get their car keys.”  We laughed and out the door I finally went.    That’s just a part of the functional life with Nick, we do what he have to do to get by and keep it in perspective so we can at least try to have a relatively “normal life”.  

As far as having Nick as a son, I have never experienced the range of emotions as with Nick.   We are truly blessed to have this little dude in our lives, he totally keeps us grounded.   We don’t take things too seriously or at least try not to.   If I happen to have a challenging day at work, once I get home and see Nick dancing or “going hard” (as Hank likes to say) with his iPod and headphones, those troubles totally melt away as Nick’s world does not have those trials or concerns.   Nick’s world is a simpler place and with his big ole’ smile and hugs, he makes my world a better place.   It is especially rewarding watching Nick do his work bins or when he’s vacuuming for work (or enjoyment.)  He has so much pride and wants to please so badly that when he accomplishes his task, you can see him beaming.   Teresa and I would joke about what kind of bumper sticker Nick would earn from his school.   You know the ones, “My kid is a brain surgeon at la de da elementary” blah, and blah, blah.   We just know Nick’s bumper sticker would be well earned!

I remember right after Nick was born and were told he had Down syndrome, one of my first thoughts was picturing us in our retirement years with Nick living at home with us … and you know what, I am fine with that.   I can’t imagine what my life would be like without Nick but I can assure you I would not trade a second.   It keeps getting better each day and each year.   We don’t know what the future will bring for Nick or us.  But we’ll get there when we get there.”

Al with a very low tone (a trait of Down syndrome) baby Nick….

Al and Nick (age 5) oh no, not the fanny pack again…

Al and Nick at the Lincoln Library a few years ago…

A father’s love is special.  I am fortunate to be surrounded by the best and so is Nick!   That is what is in my noggin this week.  Until next Monday may the joys, guidance and love of your Dad keep pushing you to do great things as mine has.

~Teresa

*”Daddy-O” is a slang phrase that is similar to dude. It was used by beatniks in the 1950s and early 1960s.

 One last note……You can now follow the blog via e-mail….check the bottom right side after the archives to enroll 🙂

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #11~The Good Ole Summertime

 The Good Ole Summer Time

Driving home from Dominick’s grocery store the other day I saw a group of enthusiastic kids jumping up and down on the sidewalk in front of their lemonade stand.  It took me back in time.  I recall the makeshift cardboard lemonade stands of past and thinking we could make a fortune.  In reality we barely made enough to buy a handful of Pixie Sticks at the local Stop & Go.  Years later, Hank and my niece Courtney crafted their own while we lived outside the East Bay area of San Francisco.  Our house was located at the very edge of a dead end street.  I think they might have sold enough cups to buy a few Pokémon cards.

Hank and his cousin, Courtney in California….Lemonade anyone?

Funny how such a visual can instantly take you back.  Oh…. the good ole summer time.  I have fond memories with my older brother Tom and younger sister, Laura.  We grew up a couple of blocks from Galveston Bay in Texas.  The Houston Yacht Club (HYC) was our playground.  We called ourselves “The Three Investigators.” We spent hours there swimming, climbing over the rocks on the jetty that served as the bulkhead around the harbor and sailing the Sunfish during the week.   Friday evenings were my favorite before a race regatta weekend. Dad would haul the Ensign out and scrub the bottom of the hull while we went swimming. Mom packed the rattan picnic basket filled with homemade crispy, golden fried chicken.

The igloo cooler (with Dad’s signature marker initials “TAR”) would be chilling Mom’s potato salad the absolute best along with a sundry of Shasta soda pops.  Mom would take us to Kroger and we would each pick out our favorite flavors (10 cans for one dollar!) Strawberry and black cherry were my favorite flavors.  Laura would always choose grape and the cola while Tom always picked the odd flavors like root beer and cream soda.

Our summers by the bay:

Dad getting the boat in ship shape for race day

Mini me in 1968, with my sibs in the background…. 

Looking back, I am not sure if anything stands out in Nick’s mind. But he does like looking at photographs from the past. Nick has Down syndrome and autism.  This week, I wanted to share a slice of our summer activities over the years.  Here is a photo tour of our summer fun:

Sandbox fun in Texas…..

Pool time… Nick messing with his brother, Hank…

Cooling off on the deck..

At Monterey a great coastline…..Yes it’s summer but it can be chilly in Northern California….

Tailgating at Sox Game…

Riding the train into Chicago with Uncle Tom….”Yay, double thumbs up!”

Our boys also got a chance to spend time down at HYC.  It was nice to share my childhood playground with the both of them.  Here is Nick with Paw Paw (my Dad)……

Nick behind the ships wheel, no worries we were dockside here. 

Hank and his cousin, Sam taking in Half Moon Bay in  California

Hank flying a kite at Hilton Head Island with his Dad and Grandpa Jim.  Nick’s playing in the sand to the right….. 

Most recently, we have been going to a new spot. An island strip called the Outer Banks (OBX) located in North Carolina.  We rent a house in the town called, Duck.  There is a peacefulness and charm to this area and the Duck Fire Department is very accomadating.

Siren testing, Nick is loving it…..

We get together with Ron and Ali, (Nick’s aunt and uncle) along with their kids Anna and Sam.  At OBX we are on beach time, very chill.  We turn the knob to “Bob” our favorite radio station and let the music take us back in time while the waves wash away all worries.

Hank, Sam and Nick chilling on the beach in OBX….

Pool time at OBX….. Nick says, Life is good!

Hope you enjoyed a slice of the good ole summertime.  That’s what’s in my noggin this week.  Time to slather on the sunscreen, blow up the beach balls, spit some watermelon seeds and enjoy the fireflies dancing in the evening sky…..  Looking forward to visiting a new coastline in Oregon for a family reunion and another trip to the OBX! Until next Monday, I hope your summer memories are  sunny, warm and relaxing.

Cheers!

~Teresa

Posted in Autism, Behavior/ ABA, Fun Side of Nick

Blog # 10 Nano Second!

Last Friday, Nick and I celebrated the end of school with a trip his favorite eatery, Taco Bell.  I like the one off 75th street in Naperville because there are no fire alarms in site for him to grab.  Yes, Nick has an obsession with fire alarms.  Since 3rd grade he has pulled 25 of them total.  For the record he has only got me twice and it only took a nanosecond!  Nick is always looking for the opening, that one moment when you aren’t paying attention.  That is the instant when he will strike.  The first fire alarm pull on my watch happened as I was fumbling to get my keys out of my purse.  He lunged across my body and clawed at the alarm before I could even try to block him.  Yes he’s that fast!

The object of his envy…..

So back to Friday lunch, I was glancing at the menu board to find something remotely low calorie when Nick grabbed a set of keys that a man in front of us had set down on the counter next to his newspaper.  Just before he pushed the red panic button on the remote I scooped them up.  Mom 1, Nick 0!

If you are around Nick for any given period of time you develop razor sharp reflexes. Let me put a lens on this. Here is a series of encounters that happened just this week.  On Sunday, my husband Al left Nick inside while he rolled up the hose reel. In merely two minutes he came back into the kitchen where Nick had wildly ransacked the refrigerator leaving the door wide open.  He had pulled out several things including two bottles of salad dressing.  The ranch dressing rested on the island with the cap off and was only spared because it was nearly empty.  Clearly, that wasn’t satisfying enough. But the full bottle of Asian Sesame was wrapped between his hands, turned upside down while he stood there choking it like a chicken as the rose colored liquid drained onto the floor.  Nick 1, Al 0!

A few days later while rolling the garbage cans halfway down the driveway Nick thought it would be funny to push the garage door button (again with the buttons!)  I stopped short in my tracks sprinted back and ducked under with my heart pounding just before I got locked out of the house.  I won that round, barely!

On Thursday we had a nice visit with Rob, a former teacher/respite worker.  Incidentally, Rob carries the esteemed title of being #20 on the fire alarm pulls.  About halfway through our visit I began to hear the sound of running water from upstairs.  Moments later the pitter patter of Nick’s footsteps followed by what I can only describe as a dastardly laugh  as the vein popped out of his forehead.   Clearly he was delighted. Rob offered to go upstairs and see what was going on.  As he came around the corner back into the kitchen he stood there holding his flip flops which he had politely left by the front door. They were dripping wet!

Nick and Rob….

Oh and let me not fail to mention that Hank left his bathroom door unlocked. I had just mopped the floor…. Cue the sound of the glug, glug….glug of Crest Fluoride rinse spilling over the banister.

A few hours later… as I put the finishing touches on the master calendar…. I might have left my pen out while I put of load of clothes in the dryer….uh oh…Nick inserted his intents…

Which brings me to Saturday, what more can he possibly do?  Nick is crafty and as I mentioned before he is always looking to find your weak point.  On this particular morning I was trying to get ready to go teach a step aerobics class.  While upstairs getting ready, Nick was in the kitchen pushing the popcorn button on the microwave followed by the intercom button on the phone.  A few minutes later in the midst of putting on my lycra spandex he made a nice Jackson Pollack design using toothpaste which he squirted in a swirling and splattered pattern from the second floor….(yes, the usually dumping spot, I am thinking of putting a plastic baby pool down any day now.) Thinking that I was staying one step ahead of him I carried my coffee with me into the closet while I changed.  However I accidentally left the mug there as I went back into the bathroom and bam, that is when he emptied it out onto the collar of my warm up jacket.  Nick 4, Mom 0….

This is going to be a long summer!

Even with the cabinet door locks back on he still manages to find ways to dump.  His goal is always trying to get our goat (see blog # 3 for more of Nick’s shenanigans.) He is *nano second fast and he will get you. I would love to hear any fun stories you have of Nick pulling one on you.  Send me your experiences with Nick and I will write a follow piece with all of your perspectives. Please e-mail your encounters with Nick to tjunnerstall@comcast.net.

There are no lessons to be learned or wise words to offer this week, except to say that I know better. I should have found something for him to do while I was busy in my realm.  So this week I simply want to offer a slice into Nick’s world….the rest of us is just trying to keep up.  That’s what is in my noggin this week.  Until next Monday, may you be on point and razor sharp as you take on the week ahead.

~Teresa 🙂

* Nano Second according to Answers.com is One billionth of a second. Used to measure the speed of logic and memory chips, a nanosecond can be visualized by converting it to distance. In one nanosecond, electricity travels approximately a foot in a wire. Admiral Grace Hopper was famous for handing out strands of “telephone wire nanoseconds” to her audience whenever she lectured about technology. Holding the wire turns the unreal concept of a billionth of a second into reality.