Posted in Autism, Down syndrome, Resources for Special Needs

Blog #209~The Big 5-0 Fire Alarm Pull

Blog #209~The Big 5-0 Fire Alarm Pull

Well this happened over the weekend in St. Louis, Nick pulled his 50th fire alarm at a wedding reception.  The Unnerstall’s are a big family and like to celebrate in a grand way.  The venue was the Chase Park Plaza Hotel in St. Louis.  The cocktail hour was just wrapping up, as the procession began to move into the dining area, that’s when it happened.

firelite-pull-station

The fire alarm was tucked behind a curtain and only partially exposed.  That’s all it takes for Nick.  My eyes momentarily diverted to the photo booth area, just to the right of the curtain.  That’s when Nick made a run for it.  I dashed over in my 3 inch high heels, and grabbed his hand just as it grazed the alarm.  He got me, after an 8 year run with a clean record.  As his middle school teacher Jess told me once, “He’s cheetah fast!”

cheetah

Two young men in their twenties busted out laughing, one saying, “Man, I always wanted to do that.”  In the moment, I was not laughing.  But admittedly, it’s hard not to chuckle at the absurd number of pulls Nick has done since third grade.  We got someone to alert the hotel desk, that it was a false alarm.  Fortunately, they didn’t evacuate the building during that stormy evening.  We walked into the dining area as the lights flashed and the sirens blared loud for well over 5 minutes before they shut off.

I should add here that in Nick’s behavior plan, it calls to remove him from the building giving no reinforcement or reacting to his actions.  This reduces him from getting the rush he seeks from the loud sirens and lights flashing.  However, the venue was in the middle of downtown St. Louis with busy streets, being on the upper floor of the hotel, and stormy weather didn’t make it feasible to do so.  Visuals are used as well, these support a person who has autism.  He also has a social story that we review, however that seems to be ineffective.  Compliance commands are another tool we utilize.  If a directive has too many words, it may be too complicated for an individual with autism.  Thus, the individual may not be able to process the information.  Using compliance commands with fewer and concise directives help them to stay on task.  In the case of walking down a corridor, we use these two directives, “Big guys keep on walking” and “Hands to self, Nick”.  These compliance commands do help Nick to stay focused and remain on task.  Nick is then given praise and positive reinforcement for making good choices.

Nick is quite pleased at himself for adding to the wedding reception festivities, me not so much 😮 

Nick at Kurt Wedding

So how did this all begin?  Some individuals with autism are sensitive to over stimulation from a sensory standpoint.  Nick tends to actively seek out more sensory stimulation on a daily basis.  It all started innocently with car remotes keys.  Nick realized at an early age that if you push the red panic button, it sets off the car alarm and the headlights will flash.  He once took the key remote out of a babysitter’s purse, and proceeded to walk up to the front door, point it at her car and set off the alarm.  By third grade, he discovered fire alarms at his elementary school.  In a matter of 2 days he set the alarm off 3 times.  We’ve noticed a pattern over the years, that the alarm pulls tend to come in three’s.  Just last week, he set off an alarm at his day program when a staff member was tending to another client.  She thought Nick would remain on the swing in the gym.  But that’s when Nick strikes, just when you divert your attention, even for a second.

The first time Nick got me was leaving the doctor’s office, as I fumbled in my purse to get the car keys.  Another time, while I was wearing a clunky therapy boot, he let go of the grocery cart and darted to one at Dominicks 8 years ago.  His Dad “technically” has a clean record.  However, Nick nearly got one on Al, at Houston’s Bush International Airport where the alarms are painted silver.  Just recently, we attended Nick’s cousin’s graduation ceremony from Bowling Green State University.  Al took Nick to the restroom he came close.  Nick pulled up a cover which sets off a very loud mini alarm alert.

There’s been some good replies on social media, that have eased the sting of being the big 5-0, one being this, “I’m sorry but I just have to laugh.  I know that you probably don’t laugh when he does this, but the sign does say pull down.  So what else is he supposed to do?”  Another reply on Facebook, “Ever vigilant Nick!  He wanted to add to the excitement.”

Well, excitement is right, Nick sure did light up the wedding reception.  I guess if he’s going to pull #50 it should be in a big, fancy venue, surrounded by family.  Go big or go home, Nick!  This weekend is one for the memory book, and Nick gave the newly wedded couple a night they won’t forget.  As his tagline says, It’s Nick’s world, the rest of us are just trying to keep up.

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 Down syndrome, Feeding, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #197~My son with Down syndrome, 24 years ago: What I learned

Blog #197~My son with Down syndrome 24 years ago: What I learned

Down syndrome journey

Birthdays are often a time to reflect back on our journey in life.  My son Nick, will be turning 24 years old next week.  I didn’t know until after he was born, that he had Down syndrome.  Honestly, I was more concerned for his health more than anything.  After a week in ICU, Nick was released.  The doctor told us to go home and love are baby.  He cautioned me that Nick might not be able to nurse properly and gain weight without having to use a feeding tube.  I thought to myself, “game on, challenge accepted”.  I rolled up my sleeves and got to work.  I hated all those wires that had been hooked up to him in ICU.  I certainly didn’t want any more hooked up to my son, moving forward.

The feeding tube never entered the equation.  Instead, what I found is that we had to work harder to be successful not only in feeding, but in reaching all developmental milestones.  Within 8 weeks, Nick started an Early Childhood Intervention (ECI) program.  Low muscle tone is a trait of having Down syndrome.  The physical, speech and occupational therapists along with his teacher provided strategies to help build strength and endurance.  More important, they gave us pragmatic ways to incorporate these at home in our daily routine.

Nick propped in high chair, supported with a bolster under his legs and pillows on the sides…..

Nick low tone high chair

That is how it all started 24 years ago, with Nick.  I’ve learned a few things while raising my son especially in the early years.  First, is that the developmental milestones take longer to hit, but each mark was met with hard work and persistence.  In addition, find the people and resources that will facilitate, motivate and help to modify your child’s environment to allow them to grow and flourish.  It’s important to keep your expectations high, just as you would with any other child.  But keep in mind, you have to be very patient, because it can take longer to roll over, crawl, walk and feed.  If you feel like your child is stalled in development, then look for other therapies and strategies to push them forward.  This was the case when Nick was a year old and unable to sit up on his own.  His core was so weak due to low muscle tone.  I made the decision to try equine (horseback) therapy which helped him immensely.  This brings me to one more lesson I learned.  Look at finding the RIGHT therapies and services, instead of just adding in more.  Each child is individual and motivated in different ways.

Nick doing horseback therapy in 1995…..

Nick horseback therapy

Consider a variety of strategies, such as infant massage, sensory integration, motor play with proper positioning, and oral motor exercises that can accelerate growth.  Keep in mind what interests your child has, and use those tools to build into play and daily routines at home.  Nick was very motivated by music and enjoyed oral motor activities like blowing and popping bubbles.  His physical therapist would have him sit on a small ball while blowing, tracking and popping bubbles.  Nursery rhymes and signing were also incorporated while sitting on the ball, which acted as a dynamic surface to build core strength.  Siblings can be great with play to stimulate movement and arousal for your baby.

Nick with his brother Hank……

Nick and Hank babies

The challenges associated with low muscle tone and Down syndrome can be met with hard work, persistence, and finding the right support and therapies that will facilitate building muscle strength and endurance for your child.  Early intervention will help to build a solid foundation which allows your child to become their best self.  Nick’s come a long way since the days where he was propped up with bolsters and pillows.  He is a strong, funny, helpful, mischievous and happy young man. Next week, we will be on vacation in Vail to ring in #24.  No blog next Monday, but you can catch Nick on social media. Happy Birthday to you Big Guy!

Nick in Key West, over the Christmas holidays 🙂 ….

Nick Key West

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, Speech and Occupational Therapy

Blog #121~10 Years of Autism

Blog #121~ 10 Years of Autism

Last Saturday, the Chicago White Sox gave a replica of the 2005 World Series Ring to all the fans. This was to commemorate the 10 year anniversary of the Sox winning the World Series.

This sure beats the heck out of any bobble head they’ve given out…

White Sox Ring

I slipped the heavy ring on, that Al brought home from the game. I thought back on the week that the White Sox won the American League Championship securing their spot in the World Series. That was the week, that we got the firm diagnosis that our son Nick, had autism. Nick is now 21 years old and has Down syndrome along with autism. A lot has happened in the last 10 years, and I’ve learned plenty in the process.

Sox  Nick and mom

What about the 11 years prior to the diagnosis of Nick having autism? Well, when he was 5 years old we had him tested but it was found that he was not on the autism spectrum because he was highly social and the oddities were due to having Sensory Integration Dysfunction.

According to the Sensory Processing Disorder Foundation (SPD Foundation), “Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”)

is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”

Nick sought out input by tapping objects, walking heavily and stimming with his toys to help organize his senses. His occupational therapist worked with him weekly providing him with a sensory diet.

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In addition, Nick also has Verbal Apraxia of Speech (an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability). The sensory and speech conditions blurred the lines, therefore the autism didn’t come to view at the time.

As Nick entered the throes of puberty, it became evident that there was more to his behaviors than just Down syndrome. That’s when we sought out Little Friends Center for Autism to do an assessment 10 years ago. Looking back I had a hunch he did. However, part of me wasn’t ready to face such a daunting diagnosis as autism. We got the report from Little Friends the day that the White Sox won the ALC championship. That report was the key to opening up a new world for us.

The official diagnosis of autism, allowed us to request more specific services for Nick. This included a better communication system, behavior plan, training, finding the NADS (National Association for Down Syndrome) support group for dual diagnosis families, and respite care through the state. With the help of Little Friends, I attended training sessions to help Nick foster independence and better communication. More importantly, I learned how to get my son toilet trained once and for all, and out of those Depends diapers.

Nick has grown a lot in the last 10 years. Things are not near perfect, nor will they ever be. We face our daily  battles. He is still stimming and raising autism awareness everywhere he goes. But the meltdowns are fewer and far between. Nick is happy and a funny guy. And when I see him standing there in his boxer briefs I am reminded of perhaps the greatest accomplishments in my life. I’m proud to say that we are done with what our autism community refers to as “Code Brown”

No more poop smears!

poop icon

If you are a parent and have a hunch that your child may have autism, this is my wish for you. That you go get an assessment, take that piece of paper and use it as your ticket to get the services to help your child.  Seeing where Nick is today is a sweet victory that I savor.  It feels like I’m winning the series in Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #83~Sensory Anchors

Blog #83~Sensory Anchors

Nick doesn’t play with toys like most kids do. Having Down syndrome and autism has changed the playing field for him.  He tends to use many of them to seek out some sensory benefit.  For instance, he likes to mound his toys up in one spot…..

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Even more fun was piling them on our cat……

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The other day he was stacking random objects here and there around the house.

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Why do kids with autism, Down syndrome and other sensory related issues  play with objects in such different ways?

sensory anchor one

There are many sensory issues associated with having autism.  Their world may get too bombarded with stimulus or feel unpredictable and overwhelming.  Finding a way to stay grounded becomes even more of a need when the senses are flooded with too much stimuli.  Often a child with sensory issues seeks out comfort in the form of a “sensory anchor” which helps them calm down.  These sensory anchors can be a repetitive activity that provides comfort and is soothing for them

Here are some examples of sensory anchors: 

*Lining up toys

*Spinning objects

*Following a line with their eyes

*Sitting in bean bag chair or swinging

*Looking at reflective objects

*Hand flapping

*Rocking back and forth

*Rubbing hands together

*Chewing on sleeves or collar of shirts and other non-food objects

*Smelling things

*Making repetitive sounds with mouth

How many of you have been out in public and notice a person with autism making odd sounds, rocking, or maybe banging on something loudly. These are ways in which they are  trying to cope in the world by using sensory anchors.  Nick’s include a variety of activities. He often chews on his sleeves and collar of his shirt.  Other times he is rocking, hand flapping, and tapping or making sounds with his mouth (that by the way sounds like a cow mooing)  🙂 

Nick’s first choice and all-time favorite is tapping a can of tennis balls against his mouth!

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Second choice, doing heavy work vacuuming!

Nick vacumming_Tabor Hills (3)

I realize that some of these are not acceptable in public, so I try to find alternatives for such occasions. For instance, I will provide deep pressure in the form of hugging to help calm him down.  But around the house and in the car, I have to respect his need to do this to help him self-regulate.   After all, everyone has some way of doing this whether it’s nail biting, twisting your hair, chewing on a pen, sitting while one leg is fidgeting to stay alert.  We all find our own way to decompress after a hectic day, right?  What’s your sensory anchor?  Music, meditation, exercise, hit the hunting or driving range, X-Box, a bubble bath or glass of wine?

zen

Bottom line, it’s important to provide opportunities for a child with autism and sensory integration issues to get grounded and centered.  So if it’s a can of tennis balls, then so be it!  That’s what is in my noggin this week.

~Teresa