Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #5 Ready, Set, Action!

“Wash… wash…wash,” I hesitated going into the other room in fear of what Nick might be doing.  Would it be my fitness shoes in the sink under the faucets running full blast yet again?  To my surprise, I went into the laundry room to witness him taking the dirty clothes off floor and one by one plunking them into the washing machine and with each one saying the word wash!  It hasn’t just been the laundry either. For the past year, he has step up in other household chores.  Trying to get his brother, Hank to unload the dishwasher was like trying to pull teeth.  But Nick completely enjoys his role that he took over since his brother left for college last fall.  Everything has its place and his careful eye has taken note over the years.  He proudly puts every cup, plate, pot and pan along with the stemware carefully in the cupboards.

A few months ago I packed away the last of the Christmas ornaments and decorations and pulled out the vacuum to clean up all of the needles that had fallen on the carpet. I plugged the cord in and turned around to see Nick with his hand on the handle.  He was ready to take it on!  Much to my surprise, he not only navigated it but held the cord appropriately off to the side and did a nice job running the vacuum across the carpet.  I knew he was doing this for his school job at the elder care home but had no idea how well he was performing.

I have to give all of the credit to the staff at his high school.  Mrs. W brought in Northern Illinois University (NIU) to do a study that was done on six of her students last year.  The abstract was about maintaining vocational skills of individuals with autism and developmental disabilities through video modeling.  Research has shown that using video modeling helps to promote independent work-related behaviors and decrease the reliance on staff.  Video based supports often result in fostering independence and generalization of job related skills.  This means there is less reliance on job coaches and co-workers all for which are critical for sustaining competitive employment.  It is like a script in that breaks down the tasks that need to be performed.  These short videos are narrated in the background with short verbal prompts.  Nick watched them every day for two weeks and then each time before he was to perform a particular task. In the case of the NIU study the videos were for loading the dishwasher and washing machine.  What I noticed immediately is that Nick enjoyed watching them over and over again.  They are much more effective than any task strip that he has always used in the past. Here is an example of a task strip:

For me the proof is in the pudding*.  I noticed a significant increase in Nick initiative and accuracy in helping out around the house.  The videos did in fact increase his generalization to doing other chores besides these two.

While the jobs are pretty basic for most people, for Nick they mark a milestone.  His goals are no longer academic in nature for the most part they are all functional.  Functional goals are non-academic and generally understood to refer to skills used in the context of routine activities and daily living. Anything he can do independently gives him not only a better chance at getting a job upon graduation but also a placement into a group home someday.   Right now, he also has many other jobs at school including shredding, washing windows, loading the dishwasher, recycling and washing clothes for the PE department.  This week we have his annual IEP meeting to discuss his progress and goals for his senior year of high school.  As I look back it is amazing to see the progress he has made given his disabilities.  At this rate, I am going to be able to give him the reigns around the house while I sit back on the couch, prop my feet up and eat bon bons!  That is what’s in my noggin this week.

*Origin of Proof is in the Pudding

Proof in this case means “ultimate test.” To “prove” used to mean to test, a meaning which survives in a limited number of usages. This is one: it literally means you can show me a wonderful recipe, and tell me about your fine ingredients, but ultimately, the test is in the thing itself, the actual results.


Posted in Autism, Down syndrome, Fun Side of Nick

Blog #4 Happiness is….

Happiness is……….

In the Peanuts cartoon, happiness is a warm puppy.  In Nick’s world happiness comes in the most surprisingly simple ways.  While it would be nice if he could tell me what makes him happy it isn’t really necessary.  You can read it all over his face.  His smile is infectious and radiates through his big almond shaped eyes that twinkle while his eyebrows arch upward and the vein across his forehead pops out.  While my fingers dance across the keyboard writing this entry, I look over to see that exact look as he watches the famous flatulence scene in the movie, The Nutty Professor.  Oh jeez boys, farting and burping…. more on this in another blog entry…..

I think back to my youth and the things that made me happy were quite simple.   Mom packing my favorite lunch, a tuna sandwich, crunchy Cheetos and Little Debbie Swiss Cake Rolls tucked inside the brown bag that she stapled at the top.  Swimming and getting a Mr. Pibb out of the coke machine for .15 cents at the Houston Yacht Club always made me happy.  Much like me, Nick loves swimming, soda pop and Swiss Cake Rolls.

As an adult, happiness is the treasured time filled with the greatest of love from family and dear friends, digging in the garden, dancing,  having my cat snuggled on my lap and hitting those fuzzy yellow tennis balls.  Those are a few of the things that feed my soul along with watching my dancing machine…….who comes by it naturally….

And oh how he loves tennis balls too….

Regarding tennis balls, he seeks them out often and taps them rhythmically on his mouth.  Sometimes that seems to be all he needs to be content.  Besides tennis balls, Nick is constantly stimming with all sorts of odd things.  The term “stimming” is shorthand for self–stimulation.  It refers to a repetitive body movement which stimulates one’s own senses such as rocking, spinning, tapping or hand flapping. It has a function related to sensory input.    Each of us during the course of a day engages in some type of behavior to rev ourselves up. How many times have you been sitting and trying to pay attention and your feet or legs are either rocking or bouncing?  What about twirling your hair?  While Nick’s behaviors may stand out more they both serve the same function.  They are all ways we are trying to alert are senses.

This is an excerpt from a report by Kendra Convery, Occupational Therapist who evaluated Nick when we lived in California twelve years ago.   “Nick’s sensory system requires high intensity and duration experiences to meet the sensory threshold.  For this reason, his engagement in sensory activities in these realms often becomes more repetitive and all-encompassing.  In addition, it seems, at least in part that many of his behaviors are an attempt to create sensory input that is organizing for him.  For example, the calming effects of watching visual stimuli appear to slow down his body and calm him.

Not all children with sensory processing problems actively seek out more at all times.  In fact, the threshold can be much the opposite. Too much stimulation or noise may be overwhelming and supports must be put in place to control the environment.  On the autism spectrum the pendulum swings both ways. It is not just the movement but the visual as well. More on this in another blog entry in the future… now back to happiness according to Nick…

Nick looks at the world in many colorful and shiny ways and always with hand flapping by his ears… Here he is watching the movie Babe and seeing a very cool reflection….

For years he would actively seek out anything in a blue bottle like Windex as his new set of lenses.  He would turn it sideways and hold it as he peered through like it was a pair of binoculars.  These days all bottles of fluids are locked behind the newly minted child proof locked cabinets.  Yet he still manages to find something else to look through.  He is quite resourceful that way.

I love Nick’s sense of humor. He finds joy in the silliest things like watching funny cats or people sneezing on a YouTube video. Yes, you can find anything on YouTube (thanks to Brian S. – Nick’s Speech Therapist for the sneezing hook up!)  And playing practical jokes while I am trying to cook….

Ooooh nooooo Woody……Hardy har har, Nick!

As his Mom, there is no greater joy then to know that he is content and happy. He is engaged in our lives and full of spunk. What more could I ask for?  One sure thing to seal the deal is to make a run to the border.  We pull up and Nick pumps his fists with two thumbs up, saying “Taco Bell” pitch perfect!   In that moment, life is as good as it gets. Simply put,  happiness according to Nick.

That is what is in my noggin this week.  May you find the simple, shiny, colorful and tasty things in your week that make you want to do a happy dance!


Posted in Autism, Behavior/ ABA, Down syndrome, Education and Special Needs

Blog #3~DS-ASD, Getting Your Goat

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.

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Posted in Down syndrome, Speech and Occupational Therapy

Blog #2~ Language Barriers

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!


Posted in Autism, Behavior/ ABA, Down syndrome

Blog #1~ Spring, Nick and Me

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!