Posted in Autism, Behavior/ ABA, Down syndrome

Blog #112~Regression of Behaviors

 

Blog #112 Regression of Behaviors

Christmas 2014 was anything but merry.  The swimsuits, flip flops, suntan lotion and pool toys sat in a pile on the chasse in my bedroom.  We never made it to the Florida Keys for our vacation.  A member of our extended family came down with pneumonia and then a snowball effect of more health problems that included a 12 day stay in the hospital.  Nick wasn’t sure what to make of things.  He is 20 years old and has Down syndrome and autism.  All he saw was his Dad or me taking off all day on hospital visits which were an hour away.  Nick picked up on the fact that something was very wrong.  He was sad and angry and missed being with the extended family.  We spent that two week break unsure of the outcome and shooting from the hip.  In 20 years of raising Nick, I have NEVER seen such a spike in regressive behaviors.

When daily routines are interrupted a child with autism can feel anxious and behaviors regress.  Strict routines, normalized school or work schedules without any unexpected occurrences enable a child with autism to progress best.  However, because the holidays are busy, stressful and filled with the hustle and bustle of foods, gifts, and family; a parent can expect to see behavioral changes.

Back to Nick and those behaviors that spiked, which included the following:

*Increased stimming with objects and louder vocal stimming

*Pushing microwave fan, phone intercom and now house alarm system much more

*Throwing objects and dumping things like a one man wrecking crew.

*Spitting and rubbing snot on flat screen TV, windows, on our clothing.

*Squirting liquid soap in his eyes, rubbing lotion all over himself

nick lotion

*Multiple, violent meltdowns

*Peeing his pants several times

And to top it off, I left a bottle of Febreeze out by accident………Oh nooooooo!

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FYI, Febreeze and a flat screen TV don’t mix well.  So, we had to purchase a new one……..

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By the way if you Google search “Febreeze on a flat screen TV” there are several entries of other kids doing this.  Nice to know we’re not alone. 🙂

I reported all of this in the school/home communication book.  The school staff wrote back that Nick was definitely not himself. He was trying to pull fire alarms, pinching his cheeks hard as well as a staff member.  To make matters worse, just as Nick was back in his school routine we had two snow days.  On top of that, the kids were off two more for the end of semester and MLK Day.  Oh, and there was a full moon over the holiday break.

autism and full moon

The house is quiet now, and I can focus on writing again. Yesterday, I did a little research on regression of behaviors and holiday breaks.  As I reflect on Christmas 2014, a couple of things stand out.  First of all, Nick’s behavior was magnified because his parents emotional fatigue and lack of emotional availability.  For over two weeks we were back and forth at the hospital.  Nick picked up on the stress.  Secondly, as a family we should have communicated in private about medical updates.  I think back on one particular day.  As I briefed Al on the hospital visit, Nick came over crying and wanted a hug. I had to remind myself that he understands much more of what we are talking about.  He also picks up on the negative vibes of conversations. Finally, one tip I read in my research was so obvious.  But when you are in the thick of things it can be overlooked.  That is, don’t let your kids be aimless.  It’s essential to find ways for them to occupy your child.  When kids are on a school break, they have less structure in their day. Bottom line, they’re going to get into more trouble and conflict because they have the opportunity to do so.

While there was no kayaking, bike rides, beach and pool time or key lime pie over Christmas we did make it through.  Things are slowly on the mend. The cousin’s presents and white elephant gifts are tucked away for now.  The Hormel Cure 81 Ham sits in the refrigerator awaiting a belated Christmas celebration at a later date. The gift of Christmas 2014 is being reminded of how precious life is and how quickly it can be taken away.  In addition, I have a new perspective of how important it is to respect Nick’s needs when there is a school holiday break. That’s what is in my noggin this week.

~Teresa

 

Posted in Autism, Down syndrome, Health Issues and Special Needs Child

Cold Season Survival

sneeze achoo

Cold Season Survival

Since we are in the trenches of the cold and flu season I wanted to post some survival tips that I use with my son who has special needs. Nick has Down syndrome and autism.  So, tackling the cold and flu season very challenging.  Here is some great information on this subject that I wrote a few years back:

https://nickspecialneeds.wordpress.com/2013/01/07/blog-36-what-i…-runs-all-over/

Cheers to a healthy start to the new year and surviving the cold and flu season.  That’s what is in my noggin this week. 🙂

~Teresa

Posted in Autism, Down syndrome

Happy New Year!

Happy New Year!

Happy New Year 2015

Whew, it was a long two week Christmas break. Having a child with Down syndrome and autism presents many challenges over the holidays.  So yes, I did the happy dance this  morning when the bus pulled up.  More on this after I wrap my mind around it.

This week I wanted to share a blog I wrote last year around this time.  I hope that it will inspire you @https://nickspecialneeds.wordpress.com/2014/01/20/blog-81dreams-for-the-new-year/

Thank you for reading and sharing Nick’s world. And by the way, I did keep those bird feeders filled up. That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome

Christmas Break

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Thank you for reading and sharing Nick’s world this year.  Have a Merry Christmas and we wish you a Happy New Year!   Enjoy your holiday with  family and friends. 

I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime.  You can also check out the Facebook page for more photos, links and video clips of big guy. We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism. 

Cheers,

~Teresa

Posted in Autism, Down syndrome

Blog #111~ Constant Child

 

Blog #111~ Constant Child

Last Saturday morning, Nick watched the same DVD over and over.  It was a continuous loop of Thomas the Tank Engine’s, “A Big Day for Thomas”.

Thomas the Train

Twenty years later I didn’t see myself listening to the dialog, and able to recite every line.  At this rate, there will be no break between Nick watching Thomas and my grandchildren following suit.  I can see it now, Hank Jr. saying, Hey Uncle Nick want to watch Thomas the Tank Engine with me?”  I also didn’t imagine stumbling over plush toys that my son dropped from the second floor.

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I didn’t picture myself scrubbing red marker stains off his clothes at age twenty.

Note to school staff:  Markers + Nick = Skin, and Clothes…….

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This got me thinking, having Nick is like caring for a constant child.  Nick is twenty years old and he has Down syndrome and autism.  He can’t stay at home by himself and requires continuous supervision.  Don’t get me wrong, he has made strides doing much more independently (like unloading the dishwasher, putting away groceries, recycling, vacuuming, etc.).  And he does watch age-appropriate movies and listens to grown-up music on his iPod.

Nick tabor hills

But at the end of the day, I’m still wiping snot off the flat screen TV and microwave.  Out in public, he can never be more than arm’s length for fear he may take off running, or to pull a fire alarm.

30 Fire Alarm pulls since 3rd grade. Is there a bumper sticker for that?

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I’m not writing this to get sympathy.  I’m simply putting a lens on what the world looks like having a young adult with Down syndrome and autism.  It’s not the end of the world.  But it is a very different world, then I expected.  The stimming, banging, tapping, yelling, dumping, phone intercom and microwave button pushing is constant and mind-numbing at times.  And you never know what he’s going to drop off the top of the staircase.  All I can do is continue working with him to foster independence.  I’ll keep redirecting his inappropriate attention seeking behaviors and have him clean up his messes.

I’ll take Stuart Little and Dora the Explorer over shaving cream any day……

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I will remind myself that the laughter, silliness, sweet kisses and unconditional love of this constant child helps to offset the rest.

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That’s what is in my noggin this week.  Now back to operation red marker removal. 🙂

~Teresa

 

Posted in Autism, Down syndrome

Blog #110~Autism Holiday Survival Tips

Blog #110~Autism Holiday Survival Tips

The Christmas holidays can be a land mine for individuals who have autism.  The changes in schedules, crowds, noises and the lights can result in way too much external stimuli to process. My son, Nick is 20 years old and has Down syndrome and autism.  As I flip the calendar to December, I can feel my anxiety level begin to arise. We all handle holiday stress in different ways. The movie, Christmas Vacation conveys this so well.

“I don’t know what to say.  It’s Christmas and we’re all in misery”

Christmas vacation cig pic

Here are 10 tips for surviving the holidays with your child who has autism:

  1. Start early, get as much done ahead of time with holiday preparations.
  2. Don’t rush, allow enough time to get from point A to point B. Give more notice when it is time to transition. This will help to avoid meltdowns.
  3. Be flexible and relax your expectations over the holidays.
  4. Pare down where you can, whether it’s decorations, presents, or parties. It’s okay to say no or bow out early.
  5. When possible try to stick to routines. Sometimes it’s easier to hire a babysitter or respite worker to stay at home with your child while you go to holiday parties.
  6. Make social stories using visuals or written words (depending on your child’s level of comprehension). This will act as a script for your child to follow.  If they can see what’s expected, they will understand the plan and won’t be as anxious.

Task strip for a trip to the mall…..

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Task strip for airline travel……

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7. Provide pictures of family members and friends that you don’t see that often prior to visiting them. If your child doesn’t like to hug then try a special handshake, high five or Nick’s favorite….

Elbow Bump 🙂

elbows

8. Give your child opportunities to help out. Allow them to make choices between two things. This gives them more control during the holidays, (when we all feel a bit out of control at times).

Nick helps out with the luggage, which gives him heavy sensory work….

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9. Find a quiet place for your child to unwind. Most of us know how to do this on our own (bubble bath, crack open a bottle of wine, exercise, etc.). But a child with autism can get overstimulated and not know how to decompress. They may need you to help them to settle down and relax.

10. Get rest when you can and take time to pause and reflect on the blessings of the season.

Christmas vacation reflection

I hope these survival tips will help your family and child with autism.  As you flip over the calendar to December today, take a deep breath.  Your child will be feeding off your cues, so……

Keep Calm Christmas

That’s what is in my noggin this week.

~Teresa 🙂

Christmas 2

Nick and his brother Hank in 1999

Posted in Autism, Down syndrome, Fun Side of Nick

Re-Blog~ 5 Reasons I am Thankful for Nick

thankful

This week, a re-blog of #75 that I wrote last November:  5 Reasons I Am Thankful For Nick (who is 20 years old and has Down syndrome and autism). Click right here @https://nickspecialneeds.wordpress.com/2013/11/25/blog-755-reaso…nkful-for-nick/

Thank you for reading and sharing Nick’s world.  Wishing you all a blessed Thanksgiving. 🙂

~Teresa

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.

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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