Posted in Autism, Down syndrome

Blog #109~ A Good Day with Autism

Blog #109~ A Good Day with Autism

This week I am sharing a chapter of the memoir which I’ve been working on about raising Nick.  This incident happened back in 2009.  He is now 20 years old and has Down syndrome and autism.  This is for all the warrior moms and dads out their battling it out on the front lines……….

A Good Day with Autism

(A chapter from the memoir about raising Nick, by Teresa Unnerstall)

“Autism Speaks. It also flaps, tics, hums, snorts, grunts, yells and sings.” My friend, Amy posted this on Facebook recently. I clicked the “like button” and chime in my two cents. “And it also hits, kicks, pinches, drops, rocks and bops.” Today was no exception. My son hit most of the marks. Nick is seventeen years old and has a dual diagnosis of Down syndrome and autism. He has his good and bad days. Here’s a look at living with autism.

The bell goes off on the alarm promptly at six o’clock a.m. Like a typical teenager, Nick needs nudging.  The morning routine moves like a conveyor belt. His clothes are laid out the night before along with a plastic bin containing his hair gel, deodorant and body spray. He eats a simple breakfast while I prepare his lunch. It is essential to keep things in order to set the tone for the day. I made a few comments in the communication notebook.  His speech is very limited so we rely on the notebook dispatches.

 Mrs. W,

Nick slept well and didn’t wake up at all last night. But, he is in one of his “dropping moods.”  He dumped out my water bottle.  Al’s coffee cup nearly went airborne. He’s also hitting the popcorn button on the microwave and running the water faucets full blast.  Oh, and he nearly shot me in the eye with Stop Pain spray he got out of my gym bag.  It’s going to be one of those days.  

Good luck, T

The bus couldn’t get here soon enough.

That’s a good day with autism.  So, what a bad day looks like?  Last July we attended a family reunion in Hot Springs.  The air was stagnant and sweltering as we walked into town.  My brother, looking to save a buck, opted to park on the outskirts of town where the parking is free. Ten blocks later we reached the city duck tour destination (motorized WWII era amphibious vehicles.)  The guide honked his horn and we all blew our yellow duck bill whistles in excitement. We were met with little but a dull entry into Lake Hamilton and the highlight was the abandoned parking lot where the old K-Mart used to be.

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After the tour we grabbed a bite to eat. Nick had all his favorites; chicken nuggets, fries and a Sprite. I thought for sure that he’d be fine walking back ten blocks. I was wrong. Just as we started to cross the busy main street, Nick stopped dead in his tracks. He began to grunt and pinch at his cheeks really hard.  Then, he lashed out like a crazed chimpanzee thrashing, screaming, hitting and kicking.

I put his arms in a basket hold and pulled him away from the street to a nearby bank plaza.  I struggled as Nick is nearly my height. By then, it had escalated to a full blown meltdown. There is no reasoning or consoling him. My older son, Hank tried to help me to control him. But I don’t allow him to take the brunt of the attack.  He lashed at both of us in his rage, clawing with his fingernails piercing our skin and drawing blood.

My sister Laura and her family stood motionless off to the side. Ten minutes later, Nick began to calm down.  We sat down on the hard, black tile edging that surrounded a flower bed.  Nick’s whole body was shaking. I encouraged him to take deep breaths to relax. Hank licked the blood off his fingers and arms and wiped them on his cargo shorts.  I looked down at my hands dripping with blood and stinging. My arms began to swell with bruises.  You could see the heat coming off the pavement as gnats buzzed all around us.

I looked up and saw two police officers coming up from two different angles.  They approached with caution.  Their hands lay across their holsters.

“Ma’am is everything alright here? We received a dispatch of a possible assault in progress.”

I brushed off the sweat and frizzy curls off my face and shook my head. “Well, I could have use your about ten minutes ago.”  Along with your tazor, I thought to myself.

Laura jumped in. “Officers, my nephew, Nick has both Down syndrome and autism. He is non-verbal. When he gets frustrated and doesn’t understand he lashes out.

“Ma’am is that correct?

I nodded.

The officers scanned the area looking for anything suspect.  My brother-in-law offered to hike back and get the car and pick us all up. The policemen stayed with us until the minivan arrived. They handled the whole situation in a professional manner.  As we waited, Nick began to show his remorse. He started to cry and patted my hand saying, “I sorry.”

That is a bad day with autism.

Nick’s behaviors with dumping have been challenging.  In the past six months he has emptied out full containers of laundry detergent, fluoride rinse, baby powder, shower gel, shaving cream, and a bottle of red wine and a sixty-eight ounce tin of olive oil. The cat isn’t safe either. Nick emptied fajita seasoning all over her. We didn’t expect to have to put child locks back on the cabinets at this point in our lives.

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This afternoon while gathering up a load of laundry, I heard hundreds of pellets hitting the kitchen floor rapid fire.  He had emptied out a four pound bag of cat food. I grabbed the broom without any reaction and told him to clean up.

As Nick swept, I repeated my mantra. “This is a good day with autism.” Deep breath. Namaste.

zen

That’s what in my noggin this week.

~Teresa

 

 

 

Posted in Autism, Down syndrome

Blog #108~ Seinfeld Thinks He Has Autism

Blog #108~ Seinfeld Thinks He Has Autism

So Jerry Seinfeld thinks he might be on the autism spectrum. This story aired last week:

In his sit-down with Brian Williams, Seinfeld said, “I think in a very drawn-out scale, I think I’m on the spectrum.” The comedian added, “You’re never paying attention to the right things. Basic social engagement is really a struggle. I’m very literal. When people talk to me and they use expressions, sometimes I don’t know what they’re saying,” Seinfeld said. “I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

Jerry Seinfeld

Since this interview aired there has been an outpouring of criticism from the autism community.  Many parents who are in the trenches battling autism are up in arms, and with good reason.  They are dealing with their child having debilitating seizures, sleep deprivation, health issues and violent meltdowns. They face the reality that their child will never talk, drive, date, get a job, live on their own or get married. It diminishes what families go through and they find it insulting to their children’s diagnosis.  Countless families are fighting to get services and funding for to take care of their child.  Amongst all this, they are cleaning up poop smear accidents.

poop icon

Here is a statement from Wendy Fournier, President of the National Autism Association:

What frightens me with these kinds of statements and stories is that I don’t want people to think that autism isn’t a serious diagnosis, or that it’s not a struggle for individuals and their families. What many people don’t understand is that on that lower-functioning end of the spectrum, we have individuals who are suffering and whose lives are at risk.” “Autism is not a designer diagnosis,” Fournier added.

Let me throw in my two cents here. My son, Nick is 20 years old and has a dual diagnosis of Down syndrome and autism.  His speech is very limited; he will never drive a car, date or get married and live on his own.  He requires supervision 24/7.  Oh and yes, I’ve cleaned up my fair share of $h*t storm accidents.

The only thing that Nick and Jerry Seinfeld have in common is that they are both incredibly funny guys.

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I am a huge Seinfeld fan, and I’m not going to boycott his shows because he made these comments without a formal diagnosis. He has the right to how he feels and share his journey of self-discovery.  But, I disagree with Seinfeld saying, “I don’t see it as dysfunctional, I just think of it as an alternate mindset.” He is suggesting that it’s just a different way of thinking, rather than a disorder.  Well, autism is a disorder!

I fear that society and government policymakers will disregard the seriousness of autism spectrum disorder (ASD).  The media is so quick to shine a light on the positive stories of autism, especially when a celebrity is involved.  That’s great, I’m all for any media attention to raise awareness. I hope Jerry continues to use his celebrity status to help advocate for more funding and services towards autism.  But society needs to see the other side of the spectrum and what families deal with on the front lines of the combat zone.  Maybe next week, I’ll write about one of those bloody battles I’ve had with Nick.  That’s what is in my noggin this week.

~Teresa

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

Blog #107~Dolphins and My Son with Special Needs

 

Blog #107~Dolphins and My Son with Special Needs

There is something about dolphins and Nick. The first time I noticed his fascination was on a field trip to the Shedd Aquarium when he was 6 years old. As the dolphins sprung out of the water he got so excited! The look on his face was sheer delight. I’d never seen him so joyful and mesmerized all at once.

Dolphin show

A few years later, at SeaWorld in San Antonio, my sister witness Nick’s joy.  Laura literally cried seeing Nick’s face light up.  He is so drawn to the dolphins and beluga whales.  Nick has Down syndrome and autism.  His speech is limited.  But no words were needed.  The look on his face said it all.  I knew that I had to find a way for him to get up close with dolphins as they seemed to be able to connect to Nick.

A few years ago we took a vacation down in the Florida Keys.  This was a perfect opportunity to find a program where Nick could get in the water with the dolphins.  There are many dolphin encounters in that area but I decided on a more personal experience at Hawk’s Cay Resort“The Dolphin Connection” provided this with small groups of 4 or 5 participants. I spoke with the head trainer to discuss our son and his special needs. She assured me they were very experienced with handling such. I created a social story filled with icons to support Nick in understanding the schedule of events. It was a beautiful day with the warm sun cascading over the aqua waters of the Keys.

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The first part consisted of a brief classroom instruction to go over rules and education on dolphins. Nick along with his Dad, brother and cousins were so excited to squeeze into wet suits and get down to the docks.  The experience was very hands-on where each participant individually got to touch, feed, hug and even kiss these amazing mammals.  Nick was completely engrossed. As the trainer had the dolphin roll over Nick quickly bent down to give the dolphin a “raspberry” on its belly.  The trainer remarked, “Well, THAT’S a first”.  Leave it to Nick,  I have a feeling that trainer will never forget him!

raspberry

The final portion of the dolphin encounter included interaction using hand signals. This was a huge splash as they were able to gesture and the dolphin would clap, twirl around, move backwards, and jump high in the air.  As I stood behind the camera filming, I was deeply moved.  This day was such a beautiful gift and the photo tells the story that Nick indeed was connected and absorbed in this moment.

Nick and his Dad……

Nick Kiss

Nick still likes to watch the video footage from that day. Two of his favorite movies are Flipper and A Dolphin Tale. I have to think that this unique experience will forever be one of the best things we have done for our son and together as a family.

Nick’s brother, Hank and  his cousin Anna….

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When you have a child with special needs and limited speech it can be extremely challenging to know what they are thinking, feeling and what they truly love.  I had a hunch that this experience would be a slam dunk.  Indeed, it was and then some.  My heart is warm in knowing that we could give this to him.   That’s what is in my noggin this week. 🙂

~Teresa