Posted in Augmentative and Alternative Communication (AAC), Autism, Fun Side of Nick

Blog #59~ The Sleuth Detective

Blog #59~ The Sleuth Detective

The iPod has disappeared, here we go again…..geesh.  One of the many “gifts” that Nick has given me besides razor sharp reflexes is a keen eye as a sleuth detective.

inspector klouseau

Things have a way of vanishing into a *black hole around here.

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Since Nick has Down syndrome and autism and limited verbal skills, I can’t exactly ask him to back track his steps to find his iPod.  I showed him the media bin where it’s should be kept as I signed the word, “help.”

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Then, I pointed to the icon in his communication book asking him where is it?  I am met with a blank stare.  So, I take off to check the usual spots.  First stop, behind the couch….nada.  Next, a peer underneath my bed….nil. Now I have to do some back tracking.  When did he have his iPod last?  Over twenty minutes have past as I searched the house.  Then I remembered he was hanging out in Hank’s room.  I do a full room scan for a few minutes then zero in on the bed.  I pulled the comforter back…!

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A few weeks ago I thought I was losing my mind.  I had a stack of letters sitting on the kitchen counter that I was going to mail the next day.  Poof, they were gone.  I sent a text to Al to see if he had mailed them…… nope.  I followed the trail again checking the usual spots….crickets……

“Oh great, now what?  Please don’t be in the trash.”

I dug my way down the garbage, picking through as coffee grounds and gunk stuck to my hands.  No luck.


Finally I had one last thought.  I opened the door to the basement that is in a state of disarray after being flooded  from the spring rains in April………

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There’s an hour of my life I will never get back. 

What is the worst thing that has vanished in the black hole?  The entire contents (10 pages) filled with icons out of Nick’s communication book.  I spent a day and a half a day sniffing out every trail I could think of that Nick might have taken.  I couldn’t imagine having to make all those icons, laminate and apply the Velcro again.


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I went into the bathroom to see if he might have flushed them down the toilet. Well, it wouldn’t be the first time.  In Blog #21~ What is Normal?  (located in the September 2012 archives), I wrote about the time my leopard reader glasses went missing.  I always keep them next to the laptop in the same place.  The next day Sergio, our plumber was fixing a clogged toilet……

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“I found out why your toilet was clogged. You can still wear theeeese glasses they were in clean water, not poopy water.”

Leopard readers back in it’s rightful place…..

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The toilet flushed just fine, what a relief…..  The next day, I went to get Nick’s work bins that are stored on a high shelf in the laundry room.  I glanced inside one.  He had emptied his book one by one and put them all in here.  Whew……Thank goodness! 🙂

Communication Book restored, we dodged a bullet on that one…..

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The phone went missing a few weeks ago. The phone is easy to find since you can hit the intercom button, but not this time.  Finally I discovered it tucked in the blue bin where I keep my blow dryer. Normally I just reach up and pull the dryer out, but last Thursday and I pulled the whole bin down.  Mystery solved, inside there it sat, the long, lost uncharged phone.

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It seems as I write this piece there is a pattern emerging.   Nick definitely likes to drop things, but then other times he likes to put them up in those high bins. Note to self for the next thing that drops into the black hole. There are no lessons
to be learned this week.  It’s just a slice of life in Nick’s world…. The rest of us are just trying to keep up!  That’s what is in my noggin.


*According to Wikipedia:  “A black hole is a region of space-time from which gravity prevents anything, including light, from escaping.[1] The theory of general relativity predicts that a sufficiently compact mass will deform space-time to form a black hole. Around a black hole, there is a mathematically defined surface called an event horizon that marks the point of no return. The hole is called “black” because it absorbs all the light that hits the horizon, reflecting nothing, just like a perfect black body in thermodynamics.”

Posted in Autism, Education and Special Needs

Blog #58~ Dad’s Tool Kit

Blog #58~ Dad’s Tool Kit

How does a man growing up land locked in Hot Springs, Arkansas end up racing sailboats on Galveston Bay?  That’s my Dad.  Indulge me this week, I am missing him.  Tommy graduated with a master’s degree from The University of Arkansas and landed a job at as a Research Chemist at Shell Oil Company which brought him to the waters. He built his first boat on his own and fell in love with the sailing.

Dad on the boat he built……..


I think about lessons that I learned from him. It was never formal like those polite moments in the pristine living room between the Beaver and Ward Cleaver.  I just noticed things.

Ward Cleaver

Here’s what I picked up from Dad’s tool kit………

 1. Keep your car clean and vacuumed

Dad was always washing cars, rubbing the interior with a rag and kept them vacuumed on a regular basis. He kept the 1974 green Nova sedan and later the 1981 beige Chevy Chevette immaculate.  I cringe when I see a car with empty cola drinks and bags of fast food discarded in the back seat like it’s a dumpster.  Dad showed me that it was a sign of respect to take care of your valuables.  So there laid the seeds for my need to have order.

When it comes to raising children you need order, especially with a child such as Nick, who has Down syndrome and autism.  A predictable and orderly environment helps him make sense of his world and be able to function better.  It helps me as well to feel in control and stay anchored.

2. Dab it with Mercurochrome™

Dad skipped the Band-Aid opting for Mercurochrome™ instead.  He would douse his cuts and scrapes with this awful red-orange stained antiseptic.


When I was a kid there was a wart on my leg that would not go away. The over-the-counter treatments from the drugstore didn’t do a thing to rid it.  One evening Dad brought some dry ice from work.  He applied it to the wart.  Within a matter of days, it disappeared.  He and mom made sure I had my own fully loaded toolbox when I moved into my own home.  When I started gardening, he gave me one of his sturdy shovels.  I still use that same shovel each spring when I plant the tomato seedlings. In a way, he is right there with me.

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Sometimes finding your own way to take care of things can produce better results.  Over the years I have learned to find my own solutions when Nick came upon a hurdle in his development.  You can’t expect the IEP team members, therapists or doctors to have all the answers.  Sometimes you have to dig on your own to figure out what will work best for your child.  Don’t settle for just a Band-Aid.

3.Read the Wall Street Journal daily

Every morning Dad read the paper and did the crossword puzzle.  Upon retirement he became a regular at the La Porte Library reading the daily Wall Street Journal there. What a thirst for knowledge.  None of us could keep up when Jeopardy was on. Just as Alex Trebek spoke and barely finished his phrase my Dad would have the answer.

Never stop reading and educating yourself. It is essential for parents who have a child with special needs to keep up with the latest news, research.  Education is empowerment and as a parent you owe it to your child to be an informed advocate.

4.Why not give it a try?

In the winter, when the garden was dormant, Dad would bake long loaves of French or pumpernickel bread.

Beard on Bread

For a while Pops got on this Asian cuisine kick.  Once we attempted to make our own eggroll skins.  It was labor intensive and we never mastered the art of getting them thin enough. In hindsight I would suggest just buying the readymade skins at the store.

Dad also travelled extensively across the world when he retired. Whether it was flying across a zip line in Costa Rica in his 70’s or dancing Swan Lake wearing a tutu along with stripped tube socks and Sperry Top Siders  while on a cruise in Russia, he embraced it fully.

Having a child with special needs can bring many limitations to a family.  It’s easy to stay in the safe shell of home but there’s a problem with this.  Your world can become too narrow.  Al and I have tried not to let this happen. Nick has traveled with us on vacations including three different trips overseas to England, France and Spain.  Was it easy?….. NO!

Can it be done?…… YES!

Big Bend in London along with Grandma Theresa (oh no not the fanny pack again)…… 🙂


I never imagined Nick could go scuba diving. But he did! 🙂  If you haven’t read this story check it out, (See Blog #53~ Scuba, Really?  located in the May 2013 archives).  Sometimes the bread comes out perfect.  Other times it’s a big flop, like those sad little egg roll skins.  But you have to give new things a try.  Grab onto that zip line and just hold on tight!

5. There ain’t no crying in baseball

no crying in baseball

Dad loved this movie, A League of Their Own.  A few years ago, at age 76, he got the diagnosis of stage four lung cancer.  I will never forget the message he sent via email quoting that line in the header of his note to family and friends.  Here it is in part……

“While you all are now sitting there long-faced and maybe teary, let me tell you some of the good side: 

I’ve had 76 years (so far) of a great life with a wonderful family and friends.  Over 17 years of retirement, with trips to Europe, Asia, Africa, South and Central America, down under, to mention a few.  And a terrrific  2nd life as an Ensign sailor/crew.”

Raising a child with special needs has brought many obstacles.  Nothing ever comes easy.  Often things seem impossible and unbearable.  Sadness is part of life.  I’ve had my share of pity parties over the past 19 years.  But Dad showed me how to handle problems with quiet dignity.  As I re-read his words above I am reminded of the fact that there are many beautiful things in life that you should always try to keep in the forefront.  Nick’s infectious smile and sense of humor…. Well it’s pretty “terrrrific!” 🙂

Nick and his cousin, Austin playing with Paw-Paw Tommy…..


Hope you enjoyed some of the tools I have picked up from Pops over the years.  That’s what is in my noggin this week.


Posted in Autism, Down syndrome, Education and Special Needs

Blog #57~ Community Jobs and Nick

Blog #57~ Community Jobs and Nick

How does someone who has special needs of both Down syndrome and autism find work in the community?  This week I am excited to have a guest blogger.  I asked Sara Stoodley, the Vocational Coordinator at Nick’s high school to write a few thoughts on Nick’s jobs.   In Blog #46~ A Day in the Life of Nick (located in the March 2013 archives) I wrote about a typical day at school along with his community jobs. He has some in school jobs such as working in the cafeteria, washing PE clothes and shredding.  Out in the community he worked at three different sites.  He worked at Tabor Hills (elderly residence home) doing maintenance, Re-Store- Habitat for Humanity (packaging and maintenance) and Adopt Pet Shelter (sorting newspapers for the animal cages.)  I think it is interesting to get different perspectives on Nick. 🙂 Here’s what Sara had to share:

Community Jobs and Nick

By Sara Stoodley, Vocational Coordinator MVHS

Nick working cookies

It’s hard to believe it’s been two year since I began working with Nick-what a wild ride! In my 10 years of working in this field, Nick is one of the most unique individuals I have ever worked with!  When I began at Metea last year, I began developing work training sites for ALL of our students, and I never imagined Nick not being a part of that. Through his time in community work block, he has increased his endurance, time on task, initiative, and his willingness to try new experiences. Given who Nick is, you must always be on your toes! Overall, Nick has had more good days than bad, and when they’re good they’re GOOD, but when they’re bad, they’re BAD.

Two stories come to mind:

THE GOOD: In his last week at Tabor Hills, he had an amazing day!!!! Each week, his job is to vacuum an area within the facility. All year, at both sites in which he vacuums we have been working with him to independently get the vacuum, unravel the cord, plug it in, turn on the vacuum, and start working. Most times, Nick needs a prompt to complete each of the steps as he will lollygag, get distracted, sit on the floor, etc. However, on this day, he completed the whole process by himself!!! What a huge accomplishment for Nick! It was also very rewarding for the team of people that he works with to see that he does have it in him 🙂

Nick tabor hills

THE BAD: Two words-FIRE ALARM! Nick always has staff with him 1:1 while he works and everyone that works with him is aware of the thrill the sounds of a fire alarm have on him.  However, one day last year, he was a sneaky little fox at Tabor Hills, a supported living facility, and identified an alarm that he had not previously recognized and he got it!!! Can you imagine the panic that went through the staff that was with him, the residents, the facility staff, and the community? Staff immediately responded to alert the administrators that it was indeed Nick who pulled the fire alarm and that there was no immediate danger but in the moment, YOWZA! Great response by all and well Nick, he was pretty proud of himself  🙂


The team is only as strong as its members. In my time working with Nick, it has always been a team. Given my role in the building, the opportunity for 1:1 time with students is limited so I rely on Nick’s team (Teachers, Support staff, Speech Pathologist, Social Worker, Occupational Therapist, etc) to assist me in finding the balance, learning his needs, and working to support the development of work skills while always striving for more for both him and our employers!

Nick has strengthened my belief that all students deserve and should be out working. He has increased my marketing repertoire as I have, at times, had to work to keep him at the job sites given who he is as an individual.  He has reminded me that there is never a dull moment and to always be on my toes as you never know what he is going to throw at you! What a pleasure and experience it has been, thank you Nick!

Nick doing packaging at Re-Store- Habitat for Humanity with Miss R…….

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A special thank you to Sara Stoodley for sharing her perspective of how Nick operates in his community jobs.  That’s what is in my noggin this week. 🙂


Posted in Education and Special Needs, Fun Side of Nick

Blog #56~ Cap and Gown…. or just gown?

Blog #56~ Cap and Gown…. or just gown?

I unfurled the gown and hung it up so the crease marks would begin to loosen.  While the iron warm up I took a look at the cap and tassel and put it on my head.

“Hmmmmmm, ten bucks that’s not going to stay on Nick’s head.”

If you think about it the graduation cap is a silly looking thing.  You try to walk and the tassel is bouncing around, dangling in your face.  The hat never sits firmly on your head.  Who came up with such a dumb looking cap for such a scholarly milestone?  Here are a few facts I pulled off of Wikipedia about the cap and gown:

cap and gown

 Graduation portrait of Linus Pauling wearing a mortarboard, 1922

“The square academic cap, graduate cap, or mortarboard] (because of its similarity in appearance to the hawk used by bricklayers to hold mortar) or Oxford cap, is an item of academic head dress consisting of a horizontal square board fixed upon a skull-cap, with a tassel attached to the center. In the UK and the US, it is commonly referred to the mortarboard is generally believed by scholars to have developed from the biretta, a similar-looking hat worn by Roman Catholic clergy. The biretta itself may have been a development of the Roman pileus quadratus, a type of skullcap with superposed square and tump.”

I wasn’t sure what moment the tissues would be needed that day.  It happened when I got down the stairs holding the freshly pressed gown.  I saw the family gathered in the living room then it hit me. Gulp, eyes welled up with tears.  So much had happened in the last 19 years to get Nick to this day.

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Armed with an icon strip I made early that morning, we dropped Nick off with Miss R, his teacher.

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We waited anxiously for the moment when Nick would be walking in with his senior class.  The processional-*Pomp and Circumstance always gets to me. It’s a powerful song that never ceases to put a lump in my throat, symbolizing pride and valor and victory.  We waited as the classmates fill in the rows of chairs, knowing that with our last name it would be awhile.  Then he appeared…….Big guy Nick!

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The first thing I noticed was that he wasn’t wearing his cap….. shocker, right 🙂  He followed the line compliantly with his bare head and distinctive double cowlicks.  I couldn’t help but see how much shorter he stood next to his peers.  At least we could spot him easily amongst the 600+ students.


I guess we didn’t need to waste that Google search on whether the tassel is worn on the left or right side. 🙂 


The senior reflection address given by the Salutatorian made mention of one thing that caught our attention.  “Metea Valley Class of 2013, we have been pioneers for the last four years.  Together we have survived the ACT’s and the winter fire drills of 2009….”  Looks like Nick indirectly got a shout out. 🙂


Considering the size of his class, the ceremony moved swiftly as the roll came from two sides in rapid fire. Nick made his way up to the podium to accept his diploma.  So far so good!  Wait, not so fast……plop there goes the diploma.  The person presenting the diploma picked it up and handed it back to Nick who proceeded to drop it a second time.  Then, as Nick reached the stairs at the end of the stage, he tossed it to the floor.  By now there was a log jam of students lining up behind him trying to get back to their row of seats.  Well, at least he sat quietly and was appropriate through the rest of the ceremony.  Plus, we dodged the DeKalb Fire Department getting called to the scene. All in all, it was a grand day full of family, love, laughter and wait for it…….

You guessed it, chocolate cake!

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It was a blessing to have my family in from Texas.  Thanks to Babs, my mom, Laura, Scott, Jenna and Jake for making the trek up.  Al’s parents Jim and Theresa were also a part of the celebration.  Milestones such as graduations much like birthdays are benchmarks to pause and look back at the life we have lived.  If you haven’t read Blog #41~Back to the Future, located in the February 2013 archives I would highly recommend you doing so (don’t forget to grab the tissues.)  Having a child who has Down syndrome and autism has been full of challenges.  His obstacles have been enormous.  Hundreds of hours of physical, occupational and speech therapy, 17 IEP meetings along with blood sweat and tears have molded Nick into the young man that he was meant to be.


It’s been one heck of a ride, and I couldn’t be more proud of Big Guy!  That’s what is in my noggin this week. 🙂


*”Pomp and Circumstance” was composed by Sir Edward Elgar (b. 6/2/1857 d. 2/26/1934). “Pomp and Circumstance” was first performed on October 19, 1901 in Liverpool, England. As the students commence onto the stage they are handed their diplomas and given a handshake. It is at that point the students flip the tassels on their hats.