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…….

firelite-pull-station

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, @ https://nickspecialneeds.com/?s=Down+Syndrome+A+New+Beginning

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. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD Nick’s Summer Update 2018

DS-ASD Nick’s Summer Update 2018

We have a lot to share after a three-week blog break.  Nick’ been flying the friendly skies and having a blast on vacation!  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  This week, find out what Nick’s been up to this summer.

Vacation started with a family reunion in Branson Missouri.  I haven’t flown solo with Nick in quite a few years, so I was feeling a little anxious.  I checked the flight status on my phone, while in the taxi heading to the airport. My jaw dropped, our flight got canceled due to aircraft maintenance.  This was the last thing I needed.  We were directed to United Airlines Additional Services line.  The gentlemen in front of me, smiled at me and Nick, saying “This is the line you don’t want to be in.”  I was nervous and saying prayers as we waited for nearly 30 minutes…….

Nick airport additional services

Fortunately, we got re-booked on another flight that was leaving at the same time.  Nick and I navigated the corridors  of O’Hare as we have done multitudes of times as a family.  We made it to the gate with 10 minutes to spare.  There was no time for a quick bite to eat, as I had alloted in my timetable.  So, I had to buy the most expensive bag of Cheez-Its to make do.

Airport Cheez-Its= Cha-ching $5.00  I should have taken my own advice from Blog #208~ https://nickspecialneeds.com/2018/06/11/blog-208vacation-tips-for-parents-of-a-child-with-special-needs/and packed some snacks.

cheezits

The family reunion was a great time and opportunity to catch up with everyone.  My mom’s side of the family has a reunion every two years.  This year was hosted by Uncle Jackie and Aunt Karen with over 100 members attending.  The resort and accommodations were wonderful.  Best of all the Overbey family give the warmest hugs.  Nick had a great time and got a couple of special gifts from his aunt and uncle.

Autism awareness bear from Aunt Mary…

NIck Autism Bear

Fire alarms from Uncle Robert…

Nick fire alarm at branson

A few weeks later, we made our annual trip to Virginia and the Outer Banks in North Carolina.  Nick’s uncle and aunt have property in both places.  Here are the highlights from VA and OBX….

Vacation in VA started out in Nick’s happy place….

nick pizza in va

The views in Virginia are breathtaking.  This property sits overlooking the James River. Uncle Ron was a gracious host on our visit here.  Time spent here is about unplugging, relaxing and enjoying the peaceful atmosphere…

VA view

Nick swing VA 2018

We did a few tours while in Virginia.  One was Blenheim Vineyards, established in 2000 by owner, singer and artist Dave Matthews.  The venue is laid back, with a deck overlooking the vineyards with a nice wine tasting offered.  On another day, we toured the Virginia Distillery.

VA whiskey

Uncle Ron and Nick’s Dad, Al sampling whiskey….

whiskey al and ron

Nick is not so much of a fan 🙂

Nick whiskey

Our second part of the trip was in the Outer Banks in North Carolina, also known as OBX.  Here are some of the highlights:

When you see this sign, it’s time to exhale, let go of all your worries and chill….

OBX signs 2018

Currituck Lighthouse…..

Curriteck Lighthouse

Floating on the lazy river pool…

Nick lazy river in obx

Nick standing guard at the crow’s nest…..

Nick ruling crows nest

Nick always manages to find the vacuum at Uncle Ron and Aunt Ali’s beach house.  He’s practicing his independent living and job skills……

 

For the first time in many years of coming to OBX, Nick wanted to spend a lot more time on the beach.  He’s never been a fan of the sand, however this year he put on his socks and shoes and came out almost everyday.  Wearing tennis shoes and socks, along with sitting in the higher beach chair, helped him cope better with the sensory issues associated with sand!

View of Duck, OBX beach…..

obx view 2018

Nick’s Dad and Brother……

Al and Hank obx 2018

Nick and his brother Hank, taking in the sunset at OBX….

Hank obx 2018    nick and hank obx 2018

Nick flirting with his brother’s girlfriend, Kristin on the crow’s nest 🙂

Nick and Kristin OBX

Cheers from me and Kristin, beach hair, don’t care….

k and me obx

The vibe in the Outer Banks is calm, family oriented and chill on the beach.  You take in the ocean breeze and the sound of the waves hitting the sandy shores and feel the tension melt from your body.  Turn the knob to Bob, FM 93.7 radio and sip on a cool beverage, leaving your worries behind.  Nick feels very comfortable here.  We are extremely grateful for the opportunity to vacation here each year, at Ron and Ali’s beach home.  This year was not the same, without Ron, Ali, Sam and Anna.  We send our love and best wishes to the family and wish Ali a speedy recovery.  Cheers to making more memories with EVERYONE together, sharing laughs and lives at VA and OBX, next summer.

Beach Fixes Everything

It’s been a great summer for Nick and our family, along with extended family.  Vacations are great to unplug, relax and restore the body and soul.  We hope that you get a chance to enjoy a nice vacation.  What’s everyone doing this summer?

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

~Teresa

For more pictures of Nick follow on social media:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram @nickdsautism

Twitter @tjunnerstall