Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #226~DS-ASD and Being on Holiday High Alert

Blog #226~DS-ASD and Being on Holiday High Alert

The Christmas tree has been taken down, and all the decorations are packed away.  Now I can let out a sigh of relief.  The three celebrations both before, during and after Christmas with our families, were action packed.  We stand on guard, watching for signs of stress that might trigger a meltdown or other undesirable behaviors.  Our son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  The sensory overload of noise, crowds, overstimulation, and changes in routine all make for a dangerous cocktail living in the world of autism.

One thing that I have learned navigating Nick’s world with a dual diagnosis of DS-ASD is that you can’t let your guard down, EVER!  So was the case over the holidays, which for the most part, went smoothly.  Christmas eve while in route to mass, Nick rattled off a stream of swear words that could rival any salty, crusty sailor.  While the rest of the congregation was praying for good health and world peace, I prayed that Nick wouldn’t drop a G-D bomb in those moments of silence and genuflection.  Thank God, he settled down and was quiet during the service.

nick 2018 christmas

After Christmas we headed down to Texas to celebrate with my family. Our flight down to Houston was smooth.  We even take him into  the of the United Club these days. Yes, there were crowds, but Nick knows the drill and loves going places, so he is motivated to be compliant.

Nick cruising through his favorite part of Chicago O’Hare Airport….

nick at o'hare

Once we reached the condos, the first thing we all noticed was every single floor of the three-story building had a fire alarm next to each stairwell.  It was a land mind of red buttons, just begging for Nick to pull them.  All hands were on deck for the next few days. We all worked together securing blockers, reminding Nick, with the compliance command, “Hands to self, big guys keep on walking”.  He was definitely staring them all down as we passed each one during our stay.

On the second day of our visit, we arranged to take family photos at a local winery.  Nick has never been a fan of these type of photo ops. Sitting patiently for photos irritates him.  Afterwards, we did a wine tasting and the kids ate some appetizers.  There was no structure to the afternoon, just a family enjoying each other’s company.  Nick grew restless, and while no one was paying attention to him.  So, he spiked a wine glass, shattering it all over the concrete floor.  As the staff member swept up the mess, Nick tossed his brother’s marinara sauce in the same direction.  The red sauce splattered all over the staff worker’s jeans as he swept up the shards of glass.  I apologized profusely and explained that Nick had Down syndrome and autism.  It’s at this juncture, that I knew that we had to get him out fast, before things escalated into a full meltdown.  There is no reasoning with Nick at this point, so a few of us did a cut and run, to get him back to the condo.

Later that evening, the whole family gathered into one condo so the grandkids could open their Christmas gifts.  While I was sorting out and distributing the gifts, a familiar sound blasted from outside.  I jumped up and made a beeline out the door to look for Nick.  I made my way downstairs in a panic, alerting the other patrons that it was a false alarm.  I didn’t know where Nick had run to, and it terrified me.  But thankfully, he was waiting at the bottom of the stairs with his eyes glazed at the blazing alarms and lights blinking.  I have no idea if my son pushed more than one alarm.  I yelled up to Al to call the front desk and let them know it was a false alarm.  Meanwhile, I grabbed Nick’s hand and walked a good 200 feet away, so he wouldn’t get the reinforcement he craved.  My hands shook as I asked Siri on my iPhone, for the number to the Conroe Fire Department, located nearest the resort.  But then, a calm focus came over me, as I explained to the firefighter about my son and his penchant for pulling alarms.  The gentleman was very understanding and kind over the phone.  Fortunately, I caught them in time, so they did not dispatch a firetruck, whew!

That was #54 on fire alarm pulls for Nick since 3rd grade…….


Bottom line, this is a reminder that our immediate family can never let our guard down, EVER.  It’s easy to get lulled into the fun and festivities, and get caught up in the moment.  But that’s the moment, that Nick can wreak havoc, in just a split second.  We can’t expect extended family members to understand Nick’s impulses in the way we do.  My husband, Al and older son Hank have a system of checks and balances in place when taking care of Nick.  One of us always has at least one eye on him at all times, especially in new environments.  We are the primary caregivers, and ultimately are responsible for Nick.  Sometimes we screw up in life, and we did that day.  But, you just have to learn from it and move on.

While Nick can give us all a run for our money at times, he also has a way of showing his pure heart.  On this trip he got to meet his new cousins Greyson and Gannon who are twins.  The twins are a year old, and Gannon has Down syndrome.  Nick was drawn to Gannon and the bond was clearly evident.  Nick was very gentle around him.  As my niece, Courtney was packing up the boys to leave, Nick bent down and gently loved on Gannon.  My family looked on and in the silence, Nick brought us all to tears. 🙂


My Niece, Courtney is the mom of four boys and wasted no time in becoming a great advocate for Down syndrome.  This is a blog I wrote last March about Courtney’s journey, @

Christmas holidays while fun, can be stressful for all of us.  Having a child with special needs creates more challenges with more noise, crowds, overstimulation, and changes in routine causing sensory overload.  This holiday was a reminder for our immediate family to stay vigilant, and remain on watch at all times.  The responsibilities of being a caregiver for a child with a dual diagnosis of DS-ASD is staggering and should never be taken lightly.  Now, I’m going to exhale, learn from my mistakes and keep pushing forward.  As 2019 begins, my mindset will attempt to shift from holiday stress to a calm, warm, and cozy winter peace.  I wish you all the same for the new year.

snowman in hot chocolate

That’s what is in my noggin this week. 🙂


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Posted in Fun Side of Nick

Blog #31~ Then and Now

Blog #31~ Then and Now

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

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

It was like driving Fred Flintstone style…….

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

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

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

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

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

Nick now, age 18……

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

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

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

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

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

One more of Nick then………

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

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

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


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