Posted in Autism, Down syndrome, Resources for Special Needs

Blog #209~The Big 5-0 Fire Alarm Pull

Blog #209~The Big 5-0 Fire Alarm Pull

Well this happened over the weekend in St. Louis, Nick pulled his 50th fire alarm at a wedding reception.  The Unnerstall’s are a big family and like to celebrate in a grand way.  The venue was the Chase Park Plaza Hotel in St. Louis.  The cocktail hour was just wrapping up, as the procession began to move into the dining area, that’s when it happened.

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The fire alarm was tucked behind a curtain and only partially exposed.  That’s all it takes for Nick.  My eyes momentarily diverted to the photo booth area, just to the right of the curtain.  That’s when Nick made a run for it.  I dashed over in my 3 inch high heels, and grabbed his hand just as it grazed the alarm.  He got me, after an 8 year run with a clean record.  As his middle school teacher Jess told me once, “He’s cheetah fast!”

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Two young men in their twenties busted out laughing, one saying, “Man, I always wanted to do that.”  In the moment, I was not laughing.  But admittedly, it’s hard not to chuckle at the absurd number of pulls Nick has done since third grade.  We got someone to alert the hotel desk, that it was a false alarm.  Fortunately, they didn’t evacuate the building during that stormy evening.  We walked into the dining area as the lights flashed and the sirens blared loud for well over 5 minutes before they shut off.

I should add here that in Nick’s behavior plan, it calls to remove him from the building giving no reinforcement or reacting to his actions.  This reduces him from getting the rush he seeks from the loud sirens and lights flashing.  However, the venue was in the middle of downtown St. Louis with busy streets, being on the upper floor of the hotel, and stormy weather didn’t make it feasible to do so.  Visuals are used as well, these support a person who has autism.  He also has a social story that we review, however that seems to be ineffective.  Compliance commands are another tool we utilize.  If a directive has too many words, it may be too complicated for an individual with autism.  Thus, the individual may not be able to process the information.  Using compliance commands with fewer and concise directives help them to stay on task.  In the case of walking down a corridor, we use these two directives, “Big guys keep on walking” and “Hands to self, Nick”.  These compliance commands do help Nick to stay focused and remain on task.  Nick is then given praise and positive reinforcement for making good choices.

Nick is quite pleased at himself for adding to the wedding reception festivities, me not so much 😮 

Nick at Kurt Wedding

So how did this all begin?  Some individuals with autism are sensitive to over stimulation from a sensory standpoint.  Nick tends to actively seek out more sensory stimulation on a daily basis.  It all started innocently with car remotes keys.  Nick realized at an early age that if you push the red panic button, it sets off the car alarm and the headlights will flash.  He once took the key remote out of a babysitter’s purse, and proceeded to walk up to the front door, point it at her car and set off the alarm.  By third grade, he discovered fire alarms at his elementary school.  In a matter of 2 days he set the alarm off 3 times.  We’ve noticed a pattern over the years, that the alarm pulls tend to come in three’s.  Just last week, he set off an alarm at his day program when a staff member was tending to another client.  She thought Nick would remain on the swing in the gym.  But that’s when Nick strikes, just when you divert your attention, even for a second.

The first time Nick got me was leaving the doctor’s office, as I fumbled in my purse to get the car keys.  Another time, while I was wearing a clunky therapy boot, he let go of the grocery cart and darted to one at Dominicks 8 years ago.  His Dad “technically” has a clean record.  However, Nick nearly got one on Al, at Houston’s Bush International Airport where the alarms are painted silver.  Just recently, we attended Nick’s cousin’s graduation ceremony from Bowling Green State University.  Al took Nick to the restroom he came close.  Nick pulled up a cover which sets off a very loud mini alarm alert.

There’s been some good replies on social media, that have eased the sting of being the big 5-0, one being this, “I’m sorry but I just have to laugh.  I know that you probably don’t laugh when he does this, but the sign does say pull down.  So what else is he supposed to do?”  Another reply on Facebook, “Ever vigilant Nick!  He wanted to add to the excitement.”

Well, excitement is right, Nick sure did light up the wedding reception.  I guess if he’s going to pull #50 it should be in a big, fancy venue, surrounded by family.  Go big or go home, Nick!  This weekend is one for the memory book, and Nick gave the newly wedded couple a night they won’t forget.  As his tagline says, It’s Nick’s world, the rest of us are just trying to keep up.

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome

Christmas Wishes

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Thank you for reading and sharing Nick’s world this year.  Have a Merry Christmas and we wish you a Happy New Year!   Enjoy your holiday with  family and friends. 

I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime.   We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism.  See you next year (that never gets old does it?) 🙂

Cheers,

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #75~ 5 Reasons I am Thankful for Nick

Blog #75~ 5 Reasons I am Thankful for Nick
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The road I have travelled with Nick was not in the plan.  It’s the thin, grey line on the map that is bumpy and full of twists and turns.  Nick has Down syndrome and autism.  The pace was bogged down as he struggled to hit developmental milestones. Other times it has been lightning fast, (like when you are racing to beat him to an exposed fire alarm). After 19 years and 30 fire alarm pulls, I am very thankful for Nick and here is why:

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1. I appreciate the small successes much more now. I don’t take anything for granted that a child has to learn like sitting, eating, crawling, walking, talking and especially toilet training. Each victory has been sweeter when Nick hit the marks.

2. I am more grounded because of Nick. He has taught our family to stay humble. While other moms were bragging about their child getting A’s in honors classes, being the star athlete and what colleges they were looking at, I smiled politely.  In my mind I was thinking, “At least Nick didn’t pee in his pants at school this week.”

3. I’ve become some what of an expert on Down syndrome and autism. Through trial and error along with wonderful teachers, therapists and mentors I have learned what works best for Nick. I am now able to pay it forward in my writing, speaking engagements and helping other parents out.

4. Life is never boring with Nick. He cracks me up with his mischievous ways.  He generates  laughter and tons of  “Likes” on my Facebook page: Down syndrome With A Slice Of Autism”.

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Here’s Nick’s signature elbow bump, (his version of a high five) with his Dad and Aunt Laura  🙂

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He’s got that look on his face like, I’m going to grab your wine)  🙂

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What a jokester, hardy har har Nick……

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5. Nick gives unconditional love so freely. Each morning he wakes up, lets out a fart and smiles. All through the day he showers me with kisses, elbow bumps and hugs.

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I am truly thankful to have travelled down this road with Nick.  It has been a blessing to be his mom.  That’s what is in my noggin this week. Have a wonderful Thanksgiving!
~Teresa

snoopy thanksgiving

Posted in Fun Side of Nick

Nick Updates

Nick Updates…….

Nick got a bad stomach bug last weekend which made it’s way through the family.  We are all feeling much better now and look forward to sharing more with you on Monday!

Last week Nick finally got the staff at the new post-secondary transition program he is in (STEPS).  Quite frankly I am surprised they made it a whole month before he beat them to it!

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TALLY COUNT=29 Fire alarm pulls since 3rd grade

Thank you to everyone who hits the like and share buttons on Facebook and the book drawing winner is……

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Michelle Villa, congrats!

down syndrome and autism intersect

Have a great weekend and see you all on Monday!

~Teresa 🙂

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #15~ Super Nick!

Blog #15~ Super Nick

“Eeeww” he says as he points down to the bathtub.

I scan the tub surface wondering what Nick is trying to communicate.  Then I see a tiny bug writhing around.  Where these bugs come from I don’t know, (maybe from inside the pipes?) I only see the creepy critters in the tub. What’s with that?  Of course I couldn’t resist turning on the faucet and torturing the defenseless thing watching it fight the swift current that led to the drain.

A few months ago I was shoring up the kitchen and again, Nick pointed at the wall next to the sliding glass window and saying “Eeeww!” There was a trail of tiny ants marching down the side of the crown molding barely seen.   I find it interesting how Nick notices everything, especially the smallest of details.  It’s near x-ray vision like Superman. 

He can scan a room and see something out of place then fix it. The last time the cleaning people came through, the kitchen table was turned at a rakish angle. (Is it just me or does anyone else have a cleaning crew that takes creative license? They are always changing the configuration of furniture or picture frames and knick knacks?) Sure enough as soon as he walked in the door Nick dropped his backpack and pushed it back to its rightful place. Just today, a birthday card fell over and he put it back up.

Later, he pointed up to the ceiling in the kitchen saying “Uh-oh!”  I look around to figure out what he is talking about and *lo and behold, one of the light bulbs burned out. Later, he saw a La Croix can in the kitchen garbage and he retrieved it and placed it in the recycle bin.   Silly things I know, but I appreciate his attention to detail.

A few weeks ago in Blog # 5 Ready, Set, Action, I mentioned how well he has been doing with unloading the dishwasher.  He knows exactly what every cabinet holds down to the last cup, bowl, plate, pan and knife and fork.  I wonder if he has been sitting at the kitchen island taking mental notes all these years while Hank was doing the unload.  The same thing goes happens with the groceries.  He loves to help put everything away and with precision might I add.

Now I wouldn’t say he is a savant by any means. He doesn’t know every single movie that won an Oscar nor what year it was or who had the starring role (like one of Hank’s high school acquaintances that has autism.) He never did obsess with lining up objects in a row.  He just seems to have a keen eye that rather fascinates me.

For as long as I can remember, object permanence has been one of Nick’s strengths.  “Object permanence is a developmental milestone that a child reaches when he or she realizes that the object exists even when it can’t be seen. The term was coined by child development expert and psychologist Jean Piaget. He studied the concept of object permanence by conducting relatively simple tests on infants. He would show an infant or young baby a toy and then cover it with a blanket. A child who had a clear concept of object permanence might reach for the toy or try to grab the blanket off the toy. A child who had not yet developed object permanence might appear distressed that the toy had disappeared.”

Let me give you an example.  When Nick was around age three we would go down to my parent’s house to visit.  Every single time, Nick made a beeline to the front bedroom, opened the toy box and pulled out his favorite, the duck musical toy.   He did the same thing at my in-laws house heading straight to the bedroom that has the stash of videos and TV/VCR and his musical toys.

When friends come over, it’s always fun to see how long it will Nick to try and grab their car keys.  You can see his watchful eye taking note of where they set them down or where a purse is put. He waits and then strikes, scooping them up as he runs to the front door pointing them at their car and pushing the red panic button.  That is actually where all this started and preceded to the bigger bang…….fire alarms!  Al and I have to hide our keys up high on the top of a kitchen cabinet. In Nick’s mind those red buttons=noise and chaos.

Interesting how the same guy that likes things in their proper place also enjoys creating mayhem. (For more mayhem check out Blog # 3~ Getting Your Goat.) His eagle eye vision can lock down on a fire alarm fast.  He looks for the opening too. That moment that you might be distracted fumbling for your sunglasses and keys is when he will make the stealthy move.  I can tell you where every single alarm is located in every restaurant and store we frequent around Aurora and Naperville. (By the way the Taco Bell on 75th Street and Rickert is fire alarm free.) The key is to do the quick scan and find them first then sure you position yourself between it and Nick. In addition, it is essential that you are no more than arm’s length from him because he is faster than a speeding bullet!  I can always expect a call during summer school about a fire alarm pull.  The site is not his regular high school but each year he remembers that there is one alarm sandwiched in between two wall mats that is uncovered. I know he has yanked that particular alarm at least three of the twenty five alarm pulls. Yes, we are holding the tally at twenty five but that won’t last.  It’s just a matter of time before he gets one (preferably not with me!)

Who me?  But  I look so innocent……

So that is what is in my noggin this week, my guy with x-ray vision and faster than a speeding bullet. Hope you enjoyed a slice of Nick’s world, the rest of us are just trying to keep up.  Until next week stay cool and thanks for reading my rants, musings and information that hopefully offers some insight about raising a child with special needs.  I enjoy your comments…. Keep ‘em coming!

~Teresa

* “Lo and behold” according to The Phrase Finder, is an exclamation, on drawing others attention to something.  It is used especially to announce things that are considered startling or important.  The phrase is often written with an exclamation mark.  Its origin comes from the word “lo” as used in this phrase is a shortening of “look.”  So, lo and behold! Has the meaning of look!-behold! It has been used since the first Millennium and appears in the epic poem Beowulf.