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