Author: Teresa Unnerstall

Teresa is the author of "A New Course: A Mother's Journey Navigating Down Syndrome and Autism" and the mother of two boys. Her youngest son, Nick is 30 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Teresa's passion is helping others understand and navigate co-occurring Down syndrome and autism. She is a DS-ASD consultant, advocate, nationally known speaker, and author. Follow Nick on Facebook, Instagram & Pinterest @Down Syndrome With A Slice of Autism and on Twitter @tjunnerstall. For more information, media links, and booking Teresa for a speaking engagement visit https://www.teresaunnerstall.com
Posted in Autism, Behavior/ ABA, Down syndrome, Education and Special Needs

Blog #3~DS-ASD, Getting Your Goat

Posted on by Teresa Unnerstall

Blog #3~DS-ASD, Getting Your Goat

  • Eggs
  • Celery
  • Balsamic vinegar
  • Olive Oil
  • Parsley
  • Fajita seasoning
  • Merlot
  • Penne pasta noodles
  • Laundry detergent
  • Acne wash
  • Fluoride rinse
  • Shaving cream
  • Whey protein powder
  • Shower gel
  • Hand lotion
  • Baby powder

That’s the short list and I don’t mean grocery list.  It is just some of the stuff that Nick has gotten his hands on and dumped out on the kitchen floor. I wish I could say that I am rewinding to back when Nick was age six.  But this is the here and now; the flavor of the week (or in this case for the last year or so.) Nick is 18 years old with a dual diagnosis of Down syndrome and autism.  This makes for an interesting mix of behaviors.

I have consulted teachers, therapists and behavior specialists in autism.  After they have a good laugh at the list, the conclusion is the same. First, it could be a sensory issue.  Nick seeks out many odd things to look through, tap and stim on and perhaps the act of dribbling out a tube of Mederma skin lotion from the second floor banister is satisfying some sensory need.   The second theory is that Nick is seeking attention and looking for a reaction. All I know that it is very hard to keep your cool when you see a full 64 ounce, Costco size container of olive oil emptied all over the floor. Fortunately I get my paper towels at Costco too. 🙂 I will say that the floor and my knees have a nice sheen to them.  Then there is our  poor cat, Miss Mellie sleeping innocently while Nick sprinkles a half bottle of fajita seasoning all over her gray fur.  Okay, I had to run into the other room and laugh on that one.

Freshly seasoned and washed cat…..

photo (113)

The dumping is just one facet.  Nick is like a toddler putting all kinds of things in the toilet.  A package of pens, my reader glasses, his iPod nano and his Dad’s watch are just a few of the things he’s submersed.  The newest trick is putting your shoes in the sink and running the water faucet full blast.  Here’s the thing.  He commits the crime, runs downstairs pointing up with a grin on his face and says “Uh oh.”  He is always looking to get a response.  It is not easy to keep a poker face during these episodes.  However I look at it like this, Nick is just trying to *”get my goat”.  The goat is a metaphor for a state of calm and peacefulness.  I grit my teeth, make absolutely no eye contact. On a shelf near the kitchen now stands a stack of permanently borrowed, white gym towels.   I point to the pile and he grabs a towel and cleans up.  No reinforcement is given to him.

Better put Mederma on the list…….

Not all the things he does are this messy.  Sometimes they are just plain funny, like a baby doll in the Pierogis….

So how can these inappropriate, attention seeking behaviors be managed?  First, the incidences are documented on what is called a Functional Behavior Assessment (FBA). On the form I record the date and time of the incident. Then follow the ABC’s:

Antecedent= What happened before the behavior

Behavior= The actual behavior and incident that occurred

Consequences= What happened after the incident

After looking at ABC ‘s, one can see if there is a common thread and determine why they might be doing the behavior.  As I mentioned in my very first blog entry, every behavior (even the bad ones) are trying to communicate something.  In some cases, it’s a sensory seeking reason.  Think about it- the sound of an object breaking or sight of a mess spilling or shattering all over the floor is exciting.  In the case of dumping, often it is when a parent is busy around the house, on the phone or trying to get ready to go to work.  It is clear that Nick is bored and seeking our attention while we are busy.  But mostly, I think it is a “control thing” for him.  It is something that HE has power over in his own life.

With this information a positive Behavior Support Plan (BSP) can be developed targeting undesirable behaviors.  Look at what possible replacement behaviors could be put in place instead.  This is where the “choice board” comes in.  This board has appropriate choices in the form of icons which he can pick from to better occupy his time. These choices should be highly preferred and stored away, so they are not accessible.  Below is a sample choice board.  The drop box is filled with fun things to throw and dump, followed by the woopie cushion, DVD player and iPod touch:

The final piece will be to add an icon to indicate that the behavior he did was wrong.  If he can see it in visual form, he will understand it.  This is to be done again without eye contact so as not to reinforce the attention he is craving.

Icon to show for inappropriate behaviors:

angry face

In the meantime, as I put the final touches on this piece, I turn around to see Nick unloading the dishwasher by himself.  This is a something he has complete control over (and is really adept at doing by himself).  I smother him with praise, “Good job big guy, I am so proud of you”.  Catch your child being good and reward them with the positive reinforcement.

Way to go Nick! 🙂

Show the icon for appropriate behavior:

happy face

All of these visual supports need to be done consistently across the board in every venue (home, school and community.) Hopefully with this plan in action, we can cut down on the dumping.  At this point in our lives we shouldn’t be dealing with this type of behavior or having to reinstall safety locks back on all the cabinet doors.  What can I say- It’s Nick’s world, the rest of us are just trying to keep up.  That’s what is in my noggin this week.

Here’s to not letting anyone get your goat*!

~Teresa 🙂

*The expression ‘to get your goat’ has its origins in horse racing. Race horses are very high-strung animals. Goats are often used as companion animals, to keep a horse calm. Someone wanting to fix a race would slip into the barn the night before the race, steal the goat, and then an upset, distracted horse would run a bad race. Hence, if you are upset and not at your best, it is said that ‘someone has gotten your goat.’

Nick age 5 with our next door neighbor goats in Northern California.

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Down syndrome, Speech and Occupational Therapy

Blog #2~ Language Barriers

Posted on by Teresa Unnerstall

Blog 2~Language Barriers

Rewinding this week back to when Nick was six years old.  At the time, Al’s brother and family (Ron & Ali along their kids Anna and Sam), lived in London.  For the second time we flew overseas to visit them.  Years ago, we had decided to never let Nick’s disabilities hold us back from getting out into the world.  Here is a little bit about the second trip over.

I love England; everybody gets what you are saying even if you pronounce it wrong.  “Where will you be staying?”  Asked the customs clerk with her proper English accent.

“Esh-er” I exclaimed like a true native Texan would say.

She followed up, “Oh you mean Eee-sher,” using a long “e” vowel sound. I didn’t mind that she corrected my phonetics. Everyone was so nice and accommodating.  The town of Esher was quaint, just outside of London with pubs a plenty.  Cheers to the pubs they are family friendly and the pints of beer go down smooth.

Then, we hit the “Chunnel” which is the train that travels undersea from London to France. There is a different feel in France.  They seemed very put off by us; the stupid Americans in our tennis shoes, jeans, ball caps and fanny packs.   First stop, the Eiffel tower. Al, Ron and Nick made it to the top. Nick is fearless that way, the rest of the kids were scared.  Ali, Anna, Sam and my older son, Hank and I had to stop halfway up.  There is a small café at the midpoint.  We each ordered a hotdog, well sort of.  The order came out with each of us receiving not one but two foot long hotdogs inside a thick, crusty baguette a piece.  What a spectacle we were.  We couldn’t help but laugh at each other while the crust exploded with each bite sending crumbs jettisoning all over us.  We were in over our heads.  This would be the first of many times that the language barrier would get in the way.

The next day was grand a tour of the Notre Dame Cathedral.  Up the narrow, spiraled staircase we made our way to the top to see the gargoyles.  About halfway up Nick started dragging his feet so Al and I took turns schlepping him on our backs like pack mules.  The sound of the chimes was resounding and felt deep in the soul.  Hank imagined the grotesque hunch-backed bellringer, Quasimodo dangling from the rope to sound the time.  One thing I would suggest to anyone touring in Europe, do not wear flip flops.  Not only is there a lot of walking, but those stony steps are centuries old, worn and slick.  My feet have never been the same since that trip up to see the gargoyles.  One by one, we checked off the sites off our bucket list.  Mine was to sit at a sidewalk café and sip champagne where the artists are lined up.  Cheers to a successful day two, with no surprises.

The river tour along the Seine lovely but with one exception, the guide spoke French.  Every meal was a mystery with surprises like a fried egg on top of a hamburger patty and negotiating at the shops and trying to get taxis was frustrating.  We found ourselves lost in translation.  A few days in Paris were enough for me.  I was ready to get back to England, and be understood again.

I think about my son Nick, who has a limited vocabulary.  He often gets frustrated in trying to communicate his needs much like I did in France.   It is a feeling of helplessness and of being lost in many respects.  For Nick and others who are on the autism spectrum, supports are needed to help them convey their needs.   We use a picture symbol system called “Picture Exchange Communication System” or “Pecs.”  If Nick can see it in picture form, he can understand it.  These supports are Nick’s voice.  It is the tool that has given him his power and ability to navigate in the world.  When he feels like he is control, he stays even keeled and less apt to have a meltdown.

We have utilized the resources of our local agencies and the school staff to train us on how to support Nick.  In addition, we use Google images and laminate additional icons which he recognizes.  The pictures not only allow Nick to connect but also help to set his schedule for the day.  He follows it pointing to each icon as if he were reading a script.  Which is exactly the intent, set up the scene for what is to come and in return the anxiety level stays low. For instance we are going to mass.  Here is how the icons are laid out:  Church-Priest-Quiet-All Done-Car-Home-Sprite (reward.)

When Nick wants to ask for something it is usually something like this:  I want-Car-Mall-Taco Bell- Tacos & Sprite. Here is a menu icon board for B-Dubs which allows him to make choices on his own:

In the last few months we have purchased a portable hand held device that has the icons built in called Touch Chat. More on this in future blog entries…stay tuned..

After that trip overseas,  I totally empathized with Nick.  Paris taught me about language barriers.  The need to feel understood and have ones needs be met is something that is essential for all of us. Speaking of expressing wants and needs please let me know of what other topics you would like to hear about… That’s what is in my noggin this week… until next Monday!

~Teresa

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #1~ Spring, Nick and Me

Posted on by Teresa Unnerstall

Blog #1~ Spring, Nick and Me

Spring is in the air, glorious pink and white blooms opening up in the pear and cherry trees as a green canvas spreads across the yard.  Last week, I watched the Robins take flight with twigs in their beaks to prepare their nests.  The symphony has begun as they sing. It’s been at least four years since I got up into the crawl space to dig out the Easter tote. This year I decided to set up the Easter village.  I carefully opened each delicate piece out its cocoon of bubble wrap and set it up in the formal living room.  As I placed the pastel, porcelain pieces on the table, there is a sudden crashing sound coming from the kitchen.

“Uh oh, Nick not nice,” he says, standing there grinning at the imploded Emu egg he dug out of the tote and smashed on the ground.  I make no eye contact, simply hand him the kitchen trash can and tell him to clean up.  Everyday something gets dumped on the ground or dropped in the toilet.  Better a hollowed out green Emu egg. The day before, it was his iPod touch which he plunged into the toilet.  That’s his shtick these days.  Trying to grab my attention with that grin on his face as if to say, look what I just did?  I have some control of my life.

This grin says, “I’ve been up to no good.” 🙂

Control, isn’t that something we all want?  I get what Nick needs to feel. Down syndrome and autism has left his speech very limited.   When he pushes intercom to make the phone beep along with the popcorn button on the microwave and flips the light switch on and off multitudes of times he wields power. After all, every behavior, even a bad behavior is trying to communicate something. I give him chores such as emptying the dishwasher, and loading the washing machine.  He is so happy to help and proud (not your typical teenager in that respect.)  But in the down times, usually when I am trying to get something done, that’s when he strikes. You name it he has probably emptied it out or chucked it. More on this later as the dump list and buttons he pushes are way too long for this piece.

Here’s a tease….Special preview of a blog to come soon……

“Uh oh, woopsie” as Nick would say!

I walked back to finish the Easter village.  Tada…..It is perfection.

That’s my boys Hank and Nick in the background 🙂

I love this space with its warm tones and pristine furniture.  It looks like a room in a model home.  It is the first room you see when you walk in the front door.  The carpet is still in good shape and I love it after the cleaning people come in and leave the vacuum mark prints in linear fashion like the grass at U.S. Cellular Field ballpark.  This room, untouched is close to perfection and where I feel I have some control in my life.

It’s just an illusion because once you move past it expect to enter chaos.  You see Nick is fast and he can grab a coffee mug and knock it to the floor in a nano second. Both my  peripheral vision and reflexes have improved significantly thanks to Nick!  Today, it’s not just Nick and the Emu egg and coffee mug but also a line of carpenter ants marching along the patio door and the guttural sounds of our bulimic cat, Miss Mellie. There she goes again letting out her high pitch meow and contorting her neck.  I sprint into the living room and scoop her up before she heaves all over the carpet.  Swiftly, I toss her into the bathroom and shut the pocket door.  Better to clean up the wood floor than carpet any day.

Speaking of looking oh so innocent…..Miss Mellie is purrr-fect….

Purrrr-haps I will keep putting up with her cat barfing.

Later that evening while Nick is content watching a movie, I do a quick check on Facebook to see my older son Hank who started college last fall, has just updated his status.  “I never realized how many hot girls go to Northern until the warm weather rolled in.  Here’s to booty shorts!’  I had to laugh and hit the “like” button. Looks like the girls have come out of hibernation.  I guess that is yet another sign of spring and something I have no control over. That’s what is in my noggin, until next week I hope you enjoy these first signs of spring!

~Teresa

Posted in Uncategorized

Welcome to Nicks World

Posted on by Teresa Unnerstall

This blog is all about Nicks world….The rest of us are just trying to keep up.  Each post will contain information, musings and rants about my life with Nick who is 19 years old and has Down syndrome and autism.