Tag: Autism

Posted in Autism, Behavior/ ABA, Speech and Occupational Therapy

Blog #20~ Is That Age Appropriate?

Posted on by Teresa Unnerstall

Blog #20~ Is That Age Appropriate?

Yesterday, I ordered Nick’s senior portraits online with the sound of Thomas the Tank Engine in the background. Sometimes it feels like I am living with a perpetual three year old. It got me thinking about some of the toys, music, and DVD’s we have weaned him off of in order for him to be more age appropriate. Yes, he is still drawn to some of that stuff.  Last week, we were in the waiting room at speech therapy and Nick grabbed up a Fisher Price musical toy. A couple of four and five year olds looked at him oddly as he towered over them swaying side to side to the song Twinkle, Twinkle, Little Star which blared out of the toy with blinking lights. That is Nick’s idea of heaven. I had a flashback to seventeen years ago of the special needs support group meeting back when we lived in Houston.  The guest speaker was a mother of an eighteen year old who had Down syndrome.  I still remember her words in that sweet Texas accent, “What looks cute at age three is not going to be at age thirteen. She was right, I get that now. I asked him to give me the music toy so he could go in with his therapist, Brian. Suddenly he let out two words clear as a bell…..”Oh shit”…. now THAT was age appropriate.

I spent a lot of time over the years researching toys and activities that would enhance Nick’s development. There are several resources listed on my website.  Just the other day I stumbled upon a great site for age appropriate activities broken down in age groups.  Check it out at http://life.familyeducation.com/child-development/activities/63988.html.    One of my favorite bloggers is Noah’s Dad, he has his finger on the pulse regarding young babies and children with Down syndrome, check him out at: http://noahsdad.com.  He offers a wealth of information, links for great toys for younger kids and Noah is absolutely the cutest thing. One more note regarding age appropriateness for our kids with special needs, take pause in what the age level of manufacturer’s label states. It’s important to look at the developmental age of the child.  For instance, if the child is ten years old and functioning like a six year old, it would be wiser to pick a toy that fits their functional ability. Bottom line, you want your child with special needs to enjoy the toy and not be frustrated.  Autism and frustration is never a good mix!

As a mom, you want your child to fit in.  I can’t control the behaviors of my son that make him stand out in public (hand flapping, rocking, and loud noises that sound like a baby calf mooing.) But I can make sure he is dressed stylish and that he won’t be walking around with a baby toy that will make him stick out even more than he already does. In addition we ditched the Dynavox (aka “The Brick”)  that was his speech output device.  It was too big, bulky and not functional out in the real world. It has been replaced with an iPod touch chat program.

The old school CD player with nursery songs is long gone too…….

Nick had his own playlist at age 5…..

Look at that yoga boy…. so bendy 🙂

So here is the current state of Nick and trying to keep the cool factor going…..

Nick’s iPod playlist= It’s everything from Lady GaGa to LMFAO and in between including some gangsta rap that his brother, Hank got him hooked on.

Nick’s top movie picks= Mrs. Doubtfire, Little Man, Cats and Dogs, Stuart Little, Babe, and Cat in the Hat.  But he really digs anything with Eddie Murphy- Dr. Doolittle, The Nutty Professor and Norbit! 🙂

While I think Nick would be perfectly happy staying with the kiddie stuff, I have this longing for normal.  I wish he could play Wii/ X-Box video games and Angry Birds like other teenagers.  But that is my dream not his.  I have to remind myself to find a balance.  I need to remember the things that bring him happiness, resonate and connect the “dots” for him. Much like that furry, stuffed animal or blankie we hold onto from childhood, Nick still longs for some of those simple toys and watching Thomas the Tank engine every once in a while to make him feel secure. At home we allow it. He is safe with his friends Thomas and Harold the Helicopter.

 Today, naughty Harold made the cat’s head his landing strip, flipped the light switch repeatedly…hardy har har… and proceeded with some “*Tomfoolery”  at the stovetop….  

Soar high Harold……he rocks Nick’s world 🙂

Age appropriate no, but sometimes it’s kind of fun to not act your age.  That’s what’s in my noggin, until next week have a great Labor Day my friends.

~Teresa

*According to Randomhouse.com *Tomfoolery is foolish or silly behavior. A tomfool was originally Tom Fool, with Tom, a nickname from Thomas, being a stereotypical male given name. Tom Fool is thus a sort of fourteenth-century equivalent of our modern Joe Cool. As a (fictitious) proper name, Tom Fool is first recorded in the fourteenth century; a sense ‘a person who plays the part of a fool in various dramas; buffoon’ appears by the seventeenth century. The generic sense ‘a foolish person’ is first recorded in the early eighteenth century.

Posted in Autism, Down syndrome, Education and Special Needs

Blog #19~ Back to School Tips for Special Needs Kids

Posted on by Teresa Unnerstall

Back-to-School

Blog #19~ Back to School Tips for Special Needs Kids

I love scrolling the Facebook wall and seeing all of the first day of school pictures.  Kids all spiffed up in their new back to school clothes and shiny shoes.  Leaving the subdivision last Thursday, I glanced over at the bus stop filled with elementary kids and their parents all with cameras in hand.  As moms that is what we do, take that moment and freeze frame it.

I did my share of taking those pictures, Nick, age 6….

      

Spiffy!

It’s hard to believe that Nick is starting his senior in high school. He has Down syndrome and autism and is in a self contained classroom.   And yes, I did take a picture of him.

It’s a little blurry because he was rocking back and forth.

I never get sad when Nick goes back to school.  In fact I do the happy dance celebrating my regained independence, (not to mention actually being able to hear the sound of a pin drop after the bus takes him away).

A couple of things have changed over the years. I don’t feel the need to have everything so perfect anymore. Also, his school supplies are no longer the typical things like rulers, scissors, pencils or wide ruled notebook paper.  His curriculum in the self-contained classroom has shifted from academic to functional.

Nick’s school supplies….

In last week’s blog, I mentioned that age brings wisdom and an AARP card application in the mail every few months. With 11 grade school years under my belt, here are my top 5 back to school tips for your  child with special needs:

  Top 5 Back to School Tips_

1. Get the haircut early, at least a week before the start of school.  Having a child with special needs often means a lot of sensory issues and angst over haircuts.  For Nick the stress of getting one can affect him for several days after.  See Blog #18, “A Cut Above” in the archives for more haircut tips.

2. Arrange a time to take your child to the classroom before school starts.  Video or take pictures of the classroom set up (desk area, sensory area, restrooms, etc..) along with the lockers, lunch room, gym and of the teachers & aids.  I create a social story using these, much like a blueprint of what his day will be like. If a child with autism can see it in picture form, they will understand it. It will also help to keep the anxiety level down.

3. Have your child help lay out the clothes, organize the school supplies and pick out lunch/snack choices the night before.  They will feel more invested, and it makes for a smoother start to the day.

4. Arrange the mode of communication with the teacher ahead of time at the meet and greet. I found that e-mail is the best way to go. In addition, I use a communication notebook that goes back and forth to school.  I can jot down how Nick’s evening went and how he slept.   In addition, the teacher and I created a custom report in a visual form.  Nick is able to point to the icons and share what he did each day with me after school.

5. Consider doing volunteer work at your child’s school.  It’s fun and you can see firsthand how your child is doing and interacting with peers. Here are some volunteer activities I’ve done:

*Room mom helping with parties

*Chaperoning on field trips

*Art awareness presenter each month

*Working book fairs

*Making copies, laminating,  and putting together learning tools for the Case Manager/Support Teachers.

Getting organized, planning ahead, becoming involved in the classroom and communicating with the staff will help make this year a success for your child with special needs. Good luck with the new school year! That’s what is in my noggin this week. 🙂

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting, Speech and Occupational Therapy

Blog #18~ A Cut Above The Rest

Posted on by Teresa Unnerstall

Blog #18~ A Cut Above The Rest

Haircuts are no fun with Nick, period.

I can still remember the first time they started to bother him.  It was right before we moved to California in 1998.  He was around four years old. I took him in on a Sunday morning hoping the churchgoers would be worshipping and the salon would be empty.  We walked in and there was only one lady who sat relaxed in her chair and getting a perm.  I sat him on my lap and as soon as the scissors came out, he began squirming and yelling.  Next thing you know he set off the car remote I had put in my pocket.  I couldn’t get out of the salon quick enough. I slapped a twenty down on the counter and got the hell out of there.  That was one of the last professional haircuts he ever got.

Nick’s first haircut in 1996, this one went well……

Nick the early years. His hair was so soft and silky…..

It got to the point where we decided to get some clippers and just give him a home haircut.  Nick’s new look became the buzz cut.

The older he got, the stronger Nick became. Nick has Down syndrome and autism.  His behaviors became more challenging as he got older. He started putting up a big fight.  In fact, if you ever wondered why his tooth is chipped it was from him flailing his body and hitting his face on the floor during a haircut.  Al and I began to dread them as much as Nick did.  Bribes, oh I mean rewards such as a Sprite and a shower didn’t seem to help either.  He began to pitch even bigger fits and we had no choice but to pin him down.  The worst haircut was sitting on the floor of the bathroom with my legs around him and my arms holding his in a basket hold. We were covered with sweat and his fallen hair felt like needles jabbing at our skin. Nick flailed and then peed all over the floor.  We sat there in a puddle of warm urine and fallen hair sticking to us.  Worst yet, we were only half done.  Picture this,  a buzz cut front in the front and mullet in the back.

As I mentioned earlier the bigger the fight, the more traumatized he became (and the longer it took him to de-escalate).  We would finish these sessions and he would be shaking, red-faced with tears streaming down his cheeks.  It broke my heart. 😦

As Nick got into his teen years, I worried that we were going to have to go to extreme measures.  Then, there was another area of hair removal to be addressed. He was starting to grow facial hair, nooooooooooo!

Now it was already impossible to give him haircuts and clipping his toenails was no walk in the park either.  It’s much easier after being in the hot tub or a long shower so that the nails are a little bit supple.  How could we possibly get a razor to his face.  Luckily I had a good team of teachers and aides in high school who offered both visual supports and tips to tackle this next hurdle.

I have to give a lot of credit to Rob Trefil, Nick’s aide in high school.  He was able to get Nick to tolerate an electric razor and actually get in there at his chin and mustache area.  We found the roller top razor worked much better than the rotary one.  Introduce shaving a little bit at a time.  Then, increase the time with each session and lots of praise.  Having a male to model this helps a lot.

Mr. T rocks…..

Big guy shaving……

Last weekend, we geared up for another haircut session.  I was worried because we had waited too long and his mop was out of control.  It was going to be like cutting the lawn two weeks too late.

Pre-haircut Nick, it’s a bit scrappy? 

To my surprise, Nick did outstanding.  In fact, it was the easiest haircut we had ever given him. He didn’t cry or get too upset at all. Hallelujah 🙂

Post haircut Nick….. *A cut above the rest!

I think a couple of things have happened to tone down the level of anxiety and how he tolerates haircuts.  Puberty has passed along with the severe aggressive meltdowns.  I see a maturity about Nick now that he is a young adult.  As parents, we have learned more about behavior management, and use visuals to guide him through the process.  We also figured out that it’s easier to cut his hair first thing in the morning before being bombarded with sensory overload.  Finally, investing in a good pair of clippers makes the cuts go smoother. Nick even helps some with it.  I am so glad the days of holding him down in a basket hold and shearing him are gone.  That is what’s in my noggin, until next Monday may every day be a good hair day!

~Teresa 🙂

*A cut above the rest…. It is originated from the saying “you and I are cut from the same cloth” (being the fabric of life) and that the cloth, from which you were cut… was or superior quality.

 

Posted in Down syndrome, Recreation/Leisure and Special Needs

Blog #17~ Life’s a Beach

Posted on by Teresa Unnerstall

Blog #17~ Life’s a Beach*

Drip, drip drip… Last Wednesday morning we were met with nothing but grey skies and the sea blending as one. It put a damper on the day in which we just wanted to bask in the sun and splash in the water. The rain tried to beat down our souls.  But all we had to do was crack open the patio door and hear the waves.  There is something about the ocean that energizes and grounds me all at once. Here is a favorite quote of mine…..

“Why do we love the sea? It is because it has some potent power to make us think things we like to think. -Robert Henri

What is it about being by the water that awakens a person?  For as long as I can remember, Nick has loved the water. Nick is 18 and has Down syndrome and autism.

Nick age 5 with his Dad, Al……

Too Cool, by the pool, Nick age 14 at the NADS Behavior Retreat….

Nick heading to swim class at MVHS….

The thought of getting Nick to actually learn to swim seemed impossible.   I enrolled him in lessons with the special recreation department where we met Mary who had been teaching for over 30 years.  She had a no nonsense approach and Nick knew she meant business.  About 5 years ago she got him to go underwater and dive for pool toys.  Seeing Nick swimming was amazing.  He looked like all the other kids in the pool. No longer was he the boy that sat in the shallow end stimming with a cup.

A few years later I started private lessons in her backyard pool out in Batavia.  Her task was to coordinate the arms and legs together. Mary put flippers on Nick and suddenly he could feel the kicking sensation that propelled him faster across the pool.

The following summer he was syncing up the movement without the flippers and heading into the deep end.  It was magical!  His technical skills are far from Michael Phelps, but he can do a mean doggie paddle.  Most importantly, he can make it across the pool without sinking.

No flippers or flotation devices….Go Nick!

This is our third year to go to the Outer Banks of North Carolina, (simply as OBX here.)  It is a crazy strip of land known as a sandbar that rose above sea level.  Just turn the knob to Bob, radio 93.3 and chill.

OBX Beach time 2011~Hank, Sam and Nick…..

The house we stayed at has a private pool and the beach access. Nick isn’t crazy about the texture of sand, but we continue to push him out of his comfort zone.  It is important to get him out in the world.  If we don’t then his world and ours will become too narrow.

Here is a bird’s eye view much in the movie “Rear Window” of our back yard here in the OBX….

A walk down the beaches of the Outer Banks is a greeting of many characters.  Floppy hat ladies in low slung chairs reading books. I wonder how many are reading Fifty Shades of Grey (or as my writer friend, Marcia F. calls it “Mommy Porn.”) A glance to the ocean you find the sporty types throwing Frisbees, footballs or out on the water kayaking, paddle boarding, body surfing and skim boarding.  Joggers dot the edges of the shoreline in varied stages of serious (with headphones and shoes) and casual barefoot walkers simply taking in the day.   Sandpipers scamper across the sand and ghost grabs burrow and pop up from time to time.  Gulls and pelicans glide across sky in seemingly perfect formation. Umbrellas act like rainbows adding pops of color across the coastline and the fisherman patiently wait for the catch of the day.

Al with Ron, my brother in law, his happy place….

The Outer Banks may be a narrow strip of beach but it offers up a large slice of chill time that brings families together and fills up the photo album with wonderful memories.  I love this beach quote!

 “Our memories of the ocean will linger on, long after our footprints in the sand are gone.” –Anonymous 

The sun did come back out.  I sat on the beach thinking about life.  It isn’t always smooth as when the full moon casted its glow over the quiet waters the night before.  The waves can get rough when navigating a child with special needs. Especially during vacations, when they are out of their element. But I am not going to let my world with Nick close in on me.  Like the ocean that has no boundaries I plan to keep pushing out to the horizon. That is what is in my noggin this week.  Until next Monday, may your life be a beach!

~Teresa

*There is no direct origin for this phrase “Life’s a Beach. But Word Reference.com says this about the quote, “Although the expression ‘life’s a beach’ may have originated as a pun for ‘life’s a bitch’, it’s also a statement on it’s own, that life is not a bitch at all, rather, life’s a beach. It signifies that the wearer views life as a pleasant beach – sun, surf, relaxation…

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #15~ Super Nick!

Posted on by Teresa Unnerstall

Blog #15~ Super Nick

“Eeeww” he says as he points down to the bathtub.

I scan the tub surface wondering what Nick is trying to communicate.  Then I see a tiny bug writhing around.  Where these bugs come from I don’t know, (maybe from inside the pipes?) I only see the creepy critters in the tub. What’s with that?  Of course I couldn’t resist turning on the faucet and torturing the defenseless thing watching it fight the swift current that led to the drain.

A few months ago I was shoring up the kitchen and again, Nick pointed at the wall next to the sliding glass window and saying “Eeeww!” There was a trail of tiny ants marching down the side of the crown molding barely seen.   I find it interesting how Nick notices everything, especially the smallest of details.  It’s near x-ray vision like Superman. 

He can scan a room and see something out of place then fix it. The last time the cleaning people came through, the kitchen table was turned at a rakish angle. (Is it just me or does anyone else have a cleaning crew that takes creative license? They are always changing the configuration of furniture or picture frames and knick knacks?) Sure enough as soon as he walked in the door Nick dropped his backpack and pushed it back to its rightful place. Just today, a birthday card fell over and he put it back up.

Later, he pointed up to the ceiling in the kitchen saying “Uh-oh!”  I look around to figure out what he is talking about and *lo and behold, one of the light bulbs burned out. Later, he saw a La Croix can in the kitchen garbage and he retrieved it and placed it in the recycle bin.   Silly things I know, but I appreciate his attention to detail.

A few weeks ago in Blog # 5 Ready, Set, Action, I mentioned how well he has been doing with unloading the dishwasher.  He knows exactly what every cabinet holds down to the last cup, bowl, plate, pan and knife and fork.  I wonder if he has been sitting at the kitchen island taking mental notes all these years while Hank was doing the unload.  The same thing goes happens with the groceries.  He loves to help put everything away and with precision might I add.

Now I wouldn’t say he is a savant by any means. He doesn’t know every single movie that won an Oscar nor what year it was or who had the starring role (like one of Hank’s high school acquaintances that has autism.) He never did obsess with lining up objects in a row.  He just seems to have a keen eye that rather fascinates me.

For as long as I can remember, object permanence has been one of Nick’s strengths.  “Object permanence is a developmental milestone that a child reaches when he or she realizes that the object exists even when it can’t be seen. The term was coined by child development expert and psychologist Jean Piaget. He studied the concept of object permanence by conducting relatively simple tests on infants. He would show an infant or young baby a toy and then cover it with a blanket. A child who had a clear concept of object permanence might reach for the toy or try to grab the blanket off the toy. A child who had not yet developed object permanence might appear distressed that the toy had disappeared.”

Let me give you an example.  When Nick was around age three we would go down to my parent’s house to visit.  Every single time, Nick made a beeline to the front bedroom, opened the toy box and pulled out his favorite, the duck musical toy.   He did the same thing at my in-laws house heading straight to the bedroom that has the stash of videos and TV/VCR and his musical toys.

When friends come over, it’s always fun to see how long it will Nick to try and grab their car keys.  You can see his watchful eye taking note of where they set them down or where a purse is put. He waits and then strikes, scooping them up as he runs to the front door pointing them at their car and pushing the red panic button.  That is actually where all this started and preceded to the bigger bang…….fire alarms!  Al and I have to hide our keys up high on the top of a kitchen cabinet. In Nick’s mind those red buttons=noise and chaos.

Interesting how the same guy that likes things in their proper place also enjoys creating mayhem. (For more mayhem check out Blog # 3~ Getting Your Goat.) His eagle eye vision can lock down on a fire alarm fast.  He looks for the opening too. That moment that you might be distracted fumbling for your sunglasses and keys is when he will make the stealthy move.  I can tell you where every single alarm is located in every restaurant and store we frequent around Aurora and Naperville. (By the way the Taco Bell on 75th Street and Rickert is fire alarm free.) The key is to do the quick scan and find them first then sure you position yourself between it and Nick. In addition, it is essential that you are no more than arm’s length from him because he is faster than a speeding bullet!  I can always expect a call during summer school about a fire alarm pull.  The site is not his regular high school but each year he remembers that there is one alarm sandwiched in between two wall mats that is uncovered. I know he has yanked that particular alarm at least three of the twenty five alarm pulls. Yes, we are holding the tally at twenty five but that won’t last.  It’s just a matter of time before he gets one (preferably not with me!)

Who me?  But  I look so innocent……

So that is what is in my noggin this week, my guy with x-ray vision and faster than a speeding bullet. Hope you enjoyed a slice of Nick’s world, the rest of us are just trying to keep up.  Until next week stay cool and thanks for reading my rants, musings and information that hopefully offers some insight about raising a child with special needs.  I enjoy your comments…. Keep ‘em coming!

~Teresa

* “Lo and behold” according to The Phrase Finder, is an exclamation, on drawing others attention to something.  It is used especially to announce things that are considered startling or important.  The phrase is often written with an exclamation mark.  Its origin comes from the word “lo” as used in this phrase is a shortening of “look.”  So, lo and behold! Has the meaning of look!-behold! It has been used since the first Millennium and appears in the epic poem Beowulf.

Posted in Autism, Fun Side of Nick

Blog #14~ “P.B.” Unnerstall

Posted on by Teresa Unnerstall

Blog #14~ “P.B.” Unnerstall

Yes, that’s right we call him “P.B.” on occasion.  In fact we have a lot of nicknames for Nick depending on what he is up to. As his brother Hank mentioned in Blog #9 when he is having a raging meltdown he referred to as “M.B.” which is code for Monkey Boy.  My Brother Tom always called him “Bics” which stands for “Bull in a China Shop.”  Nick’s Dad refers to him as “Floct,” where he came up with that I have no idea.  Al is always making up random, goofy names for family members.  For instance our niece Courtney is “Courtal Minortal” her brother, Austin is called “Stinny or “The Stinnalator.” On the other side of the family he calls our niece Anna, “Anna Bo-bana” and her brother Sam is “Sam-u-Wela” or “Welatron.” My sister Laura’s kids are Jake aka named “Jakey Wakey” and Jenna also known as “Wenna”   Now that I am writing all these silly nicknames I am starting to wonder about the man.

So back to “P.B.” His formal name is Nicklas James Unnerstall.  Having such a last name we decided on short, strong names for the boys. My thought was  if we went really long on the names they might run out of spots while bubbling in their name on the SAT test. (Well, guess we don’t have to worry about that with Nick after all.)  So we chose the name, Nick.

It goes back to the movie called “A Sure Thing.”  The two main characters (college students) are hitchhiking across country and no one will stop and pick them up.  So, the female character played by Daphne Zuniga (formally of Melrose Place) stuffs a sweater under her shirt to make it look like she is pregnant.  An elder lady taking pity and stops to pick them up and asks what they plan to name the baby.  She gives a name like Ethan or something (I can’t remember exactly.)  John Cusack’s character pipes up and says….”No, we can’t name him that.  It sounds like a kid that eats paste.  We have to give him a strong name like Nick.  Nick’s your buddy, he’s your pal.  You can throw up in his car.” By the way it is a great movie!

Now we get a lot of questions about the spelling, Nicklas.  Yes it is a real way to spell it, at least in Sweden it is.  After he was born, Al gave the attending nurse that spelling on the birth record.  He actually thought that was how Jack Nicholas spelled his name.  I didn’t really pay attention at the time as I was feeling the after effects of giving birth.  FYI, his middle name, James was taken from his grandpa Jim.

I still haven’t answered the burning question of the name “P.B.” Well this stands for “Pasta Boy.”  For as long as I can remember, the boy can eat his weight in pasta.

Nick and Gma … the early days…..

I don’t think I have ever seen such delight as when Nick is presented with a large bowl of pasta. Around the age of seven we upgraded to the adult portions as the child’s plates just weren’t cutting it. The servers always look at him with skepticism as they put the heaving bowl of spaghetti with marinara sauce in front of Nick.  But we knew would polish it off.

Going….

Going………………..Gone!

Here he is after a full day of rides at Disneyland…. and a full bowl of pasta….stick a fork in him.. done!

To this day he still jams it out…. and delights in every moment…..Before….

and after…..

While Nick has an extra chromosome in the 21st pair (Down syndrome called Trisomy 21) that has given him many physical attributes that make him look different he has a lot of the same genetic characteristics that make him more like us than different.  He is a string bean and his build is very much like mine.  Speaking of nicknames, mine was “Twiggy” a famous model from the 1960’s.

I was a dinky little kid….

Nothing but arms and legs…with my sis, Laura isn’t she cute. And hey how about those matching Easter dresses crafted by my Mom the expert semstress! (That’s Bo our Border Collie in the background.)

Back then much like Nick does, I could eat whatever I wanted and not gain an ounce.  My personal best was when I was ten years old at Poncho’s Mexican Restaurant located in the heart of beautiful Pasadena, Texas (you know…. where the award winning movie Urban Cowboy was based.)

I was trying my best to keep up with my brother.  Poncho’s offered a family friendly and affordable all you can eat buffet.  You go through the line for the first course feasting hungry eyes as you chose from the vast  steamy trays of spicy entrees. Once you have finished with round one you simply raise the miniature, plastic Mexican flag at the center of the table and the server will take your next order.

 So drum roll please, my personal best was….. tada… thank you….

10 enchiladas

8 Tacos

2 helpings of rice and beans

2 sopapillas (Sopapilla=fried dough that you load up with honey and bite down and it is a gooey, warm and delicious mess!

Driving home from Poncho’s was never a treat with my brother in the car. The three of us would be jammed with our stuffed selves in the backseat of the blue Chevy-Nova station wagon with no AC and in a matter of minutes Tom could summon his colon to rip out the worst farts ever. I could never pump the window handle fast enough to get the stinch out.  I would look over at Tom who would be busting out laughing and rather proud of himself.  Oh, and he would keep a death grip on his window handle tight so the window stayed up.  By the end of the ride back to La Porte it was like that scene out of the movie “Blazing Saddles.” (I hope my friend, Ristow is reading this. He loves the potty humor.)

And so it appears that I have seriously taken the word digress to a whole new level this week.  It would be remiss of me not to mention how much joy Nick gets out of letting a few rip each day (and yes he loves Mexican food nearly as much as pasta.) He totally knows he is funny and will look right at you with that dastardly laugh and vein popping out of his forehead. In fact each morning I am warmly greeted by Nick who comes into the bedroom and lets one go and says “farver” with a laugh.  Oh what a delightful wake up call. I love Nick’s sense of humor, unspoken but sometimes no words are needed.  He also delights in his burps too.  As soon as he takes the first few sips of Sprite at a restaurant he begins the litany of burps sounding like a frog in heat.  I often want to ask “Could you seat us in the burping section.”

“OMG, I just let go of the best burp ever!”

Please forgive my “*Sophomoric humor” clearly I have gone off the rails.  Living with a bunch of boys will do that to you. That is what is in my noggin this week, just a pile of protoplasm. I will blame it on getting a year older. Hey, it’s my birthday today.  I am raising the red, white and green flag for a second helping. Load me up and light a match!

Cheers to celebrating another birthday as well to our country on Wednesday, raising the red, white and blue!

Until next Monday may the sound of fireworks rip and roar in your life and excite you as much as a giant bowl of pasta or refried pinto beans hee hee….!

~Teresa

*Sophomoric humor refers to juvenile, puerile, and base comedy that would normally be expected from an adolescent. It is used to refer to a type of comedy that often includes bathroom humor and gags that are based on and appeal to a silly sense of immaturity.

Posted in Autism, Fun Side of Nick

Blog #13~Take 1, Take 2, Take 3…. oh just keep snapping!

Posted on by Teresa Unnerstall

Over the years, the process of getting a clean shot of Nick in a photo has never been easy.  Three things have to happen.  First you have to get him to look into the camera with eyes fixed and not flat.  Then, catch his smile.  Oh and while along try to keep his hands from flapping around his ears.  Nick when excited about something can do some serious flapping…..

Yes I can…

“It’s my brother’s birthday I’m gonna flap if I want to… Happy Birthday Hank!

Most of the family photos appear angelic as we have our arms coiled around him lovingly.  Actually this is a desperate attempt to control the hands flapping!

Unnerstall Family photo….

I love getting the Christmas cards from our fellow dual diagnosis friends and their families.  It is always a mirror image of those wrapped arms that appear to be peaceful and in control. Oh wait there are more……….

Mom and I trying to get Nick to look at the camera for a Rodger’s Family photo…

Oh what a sweet picture of Jim and Theresa with the grandchildren… note the gentle holding of Nick’s hands while calmly looking into the camera….

Mount Diablo in Nothern California… Their faces say it all…

“I know that all my cousins are looking straight ahead at the camera, but  I am look away Nick!”….

Poor Hank, I can’t tell you how many pictures he and  our family have endured  patiently sitting and smiling while waiting for Nick to maybe look into the camera and smile.

Nick says…”Who needs Santa, this hand flap is way better.”   Gotta love Santa’s gaze at him.  

How many school pictures of Nick have been re takes?  Uh ya… all of them!

We call this one “Off-Centered Nick” but it’s a rather cute shot (2nd grade)

Which brings us to senior portrait time, oh my.  A lot has changed since my high school days back in La Porte, Texas.

Back then, they only offered two shots. (That sounded like an old person speaking didn’t it?)  I remember being bummed that we didn’t get to do the pose like Mom had.  Even the graduating classes two years before me did.  You know the one with the fluffy white feathers that hit just above the bare shoulders.  I couldn’t wait to see myself  like this….

Mom rocking the feathers…

My ’79 graduating class got stuck with the casual street clothes look,  fake green ficus creeping over the background  and a lame tree trunk covered with lichen. Not quite the same is it?

The second shot was the with the conservative gray background and traditional cap and gown.  These days it is a complete photo shoot with multiple backgrounds and wardrobe changes including props such as a band instrument or sporting equipment. Which leads this story to the present tense and Nick who had his senior portraits taken last Friday.

Several things need to happen to pull such a feat off.  First besides the top three items that I listed above is timing.   I made sure to block an hour shoot rather than 30 minutes to allow for Nick to transition and in case he needed a break.  With Nick’s hair that grows like Samson……  timing is everything. Oh and the stars need to be in alignment.

This would be too late…..

So, we arrive at the studio complete with my bag full of things to try to get Nick to look at the camera. And the task strip that had icon pictures of camera, smile, wait, smile, all done and then of course the big reward at the end…. ta da!

Double thumbs up.. yes!!!!!!!!!!!!!!!!!!

I told the photographer that he had a limited number of money shots.  Just keep snapping… and he did. Between the photographer, Hank and I engaging in countless sound effects, silly toys like whoopie coushins, fake burps sounds, slap stick humor and yes…..two wardrobe changes and five different backdrops we might just have a few keepers.   We’ll see how the film rolls in a few weeks.  Funny how such a simple thing like having your photo taken can be such a process and wear on you and your whole family.  These things are never easy with Nick.  But somehow in the midst, there usually is a nugget you take with you.  It’s a tiny bit that stays in your memory bank that brings a snicker and smile…..

That’s what is in my noggin this week. Until next week may you find those little nuggets of happiness and say cheese…..  and don’t forget to flap your hands!

~Teresa

Posted in Down syndrome, Fun Side of Nick

Blog #12- Daddy-O

Posted on by Teresa Unnerstall

Daddy-O

Blog #12- Daddy-O

Three years ago I stood in the card isle gulping back a lump in my throat.  It was the first time I would not be picking out a Father’s Day card for my Dad.  I still miss him dearly.  He was an accomplished man, a Fulbright Scholar, chemist, sailor, and all around witty guy.  I was guided by the best.  I could always talk to him about Nick and he would quietly listen and nod. My son Nick has Down syndrome, and was later diagnosed with autism.

 My Dad and Nick….

My Dad was known to the grandkids as Paw Paw, floor time fun with Nick and his cousin, Austin…

I have been blessed to not only have the guidance and love of my Dad, but also from my Father in law.  Jim has always had my back and continues to be the rock as well as the voice of reason.

Grandpa Jim and Nick….

 Jim is know by the grandkids as GPA…..

And then there is Nick’s Dad.  Al helps me keep things on an even keel. He can lighten the mood with a joke when I take things to seriously. 

Here is Al’s perspective of being Nick’s Dad:

“When Teresa asked me to be a “guest blogger” this week, the topic was very interesting … Being Nick’s Dad.   Just to start off I’ll tell you there is never a dull moment around our house.   With Nick, the house is fully energized.  Yes he does chill but when he is on his game, you can never really relax.  Nick in “high motor” is always searching for the next thing to do, whether it’s an appropriate behavior or not.   There are things we do in our house because of Nick that most families I would gather don’t do … or for that matter would ever imagine doing.   I think back to one morning I had my boss in town and I was just running a few minutes late trying to get out the door to go pick him up at his hotel.   As I reached up on top of one of our cabinets to grab my car keys, they were intermingled with our cellphones, Teresa’s car keys and maybe a wallet.   You see, those important things stay out of Nick’s reach since he will set off the car remotes or they end up in the toilet.  Anyway, as I am trying to find my keys I grabbed whatever I could and a multitude of keys came crashing down off the cabinet nailing me right in the face.   I looked at Teresa, smiled wryly and said “I’m sure everyone has to go through this to get their car keys.”  We laughed and out the door I finally went.    That’s just a part of the functional life with Nick, we do what he have to do to get by and keep it in perspective so we can at least try to have a relatively “normal life”.  

As far as having Nick as a son, I have never experienced the range of emotions as with Nick.   We are truly blessed to have this little dude in our lives, he totally keeps us grounded.   We don’t take things too seriously or at least try not to.   If I happen to have a challenging day at work, once I get home and see Nick dancing or “going hard” (as Hank likes to say) with his iPod and headphones, those troubles totally melt away as Nick’s world does not have those trials or concerns.   Nick’s world is a simpler place and with his big ole’ smile and hugs, he makes my world a better place.   It is especially rewarding watching Nick do his work bins or when he’s vacuuming for work (or enjoyment.)  He has so much pride and wants to please so badly that when he accomplishes his task, you can see him beaming.   Teresa and I would joke about what kind of bumper sticker Nick would earn from his school.   You know the ones, “My kid is a brain surgeon at la de da elementary” blah, and blah, blah.   We just know Nick’s bumper sticker would be well earned!

I remember right after Nick was born and were told he had Down syndrome, one of my first thoughts was picturing us in our retirement years with Nick living at home with us … and you know what, I am fine with that.   I can’t imagine what my life would be like without Nick but I can assure you I would not trade a second.   It keeps getting better each day and each year.   We don’t know what the future will bring for Nick or us.  But we’ll get there when we get there.”

Al with a very low tone (a trait of Down syndrome) baby Nick….

Al and Nick (age 5) oh no, not the fanny pack again…

Al and Nick at the Lincoln Library a few years ago…

A father’s love is special.  I am fortunate to be surrounded by the best and so is Nick!   That is what is in my noggin this week.  Until next Monday may the joys, guidance and love of your Dad keep pushing you to do great things as mine has.

~Teresa

*”Daddy-O” is a slang phrase that is similar to dude. It was used by beatniks in the 1950s and early 1960s.

 One last note……You can now follow the blog via e-mail….check the bottom right side after the archives to enroll 🙂

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #11~The Good Ole Summertime

Posted on by Teresa Unnerstall

 The Good Ole Summer Time

Driving home from Dominick’s grocery store the other day I saw a group of enthusiastic kids jumping up and down on the sidewalk in front of their lemonade stand.  It took me back in time.  I recall the makeshift cardboard lemonade stands of past and thinking we could make a fortune.  In reality we barely made enough to buy a handful of Pixie Sticks at the local Stop & Go.  Years later, Hank and my niece Courtney crafted their own while we lived outside the East Bay area of San Francisco.  Our house was located at the very edge of a dead end street.  I think they might have sold enough cups to buy a few Pokémon cards.

Hank and his cousin, Courtney in California….Lemonade anyone?

Funny how such a visual can instantly take you back.  Oh…. the good ole summer time.  I have fond memories with my older brother Tom and younger sister, Laura.  We grew up a couple of blocks from Galveston Bay in Texas.  The Houston Yacht Club (HYC) was our playground.  We called ourselves “The Three Investigators.” We spent hours there swimming, climbing over the rocks on the jetty that served as the bulkhead around the harbor and sailing the Sunfish during the week.   Friday evenings were my favorite before a race regatta weekend. Dad would haul the Ensign out and scrub the bottom of the hull while we went swimming. Mom packed the rattan picnic basket filled with homemade crispy, golden fried chicken.

The igloo cooler (with Dad’s signature marker initials “TAR”) would be chilling Mom’s potato salad the absolute best along with a sundry of Shasta soda pops.  Mom would take us to Kroger and we would each pick out our favorite flavors (10 cans for one dollar!) Strawberry and black cherry were my favorite flavors.  Laura would always choose grape and the cola while Tom always picked the odd flavors like root beer and cream soda.

Our summers by the bay:

Dad getting the boat in ship shape for race day

Mini me in 1968, with my sibs in the background…. 

Looking back, I am not sure if anything stands out in Nick’s mind. But he does like looking at photographs from the past. Nick has Down syndrome and autism.  This week, I wanted to share a slice of our summer activities over the years.  Here is a photo tour of our summer fun:

Sandbox fun in Texas…..

Pool time… Nick messing with his brother, Hank…

Cooling off on the deck..

At Monterey a great coastline…..Yes it’s summer but it can be chilly in Northern California….

Tailgating at Sox Game…

Riding the train into Chicago with Uncle Tom….”Yay, double thumbs up!”

Our boys also got a chance to spend time down at HYC.  It was nice to share my childhood playground with the both of them.  Here is Nick with Paw Paw (my Dad)……

Nick behind the ships wheel, no worries we were dockside here. 

Hank and his cousin, Sam taking in Half Moon Bay in  California

Hank flying a kite at Hilton Head Island with his Dad and Grandpa Jim.  Nick’s playing in the sand to the right….. 

Most recently, we have been going to a new spot. An island strip called the Outer Banks (OBX) located in North Carolina.  We rent a house in the town called, Duck.  There is a peacefulness and charm to this area and the Duck Fire Department is very accomadating.

Siren testing, Nick is loving it…..

We get together with Ron and Ali, (Nick’s aunt and uncle) along with their kids Anna and Sam.  At OBX we are on beach time, very chill.  We turn the knob to “Bob” our favorite radio station and let the music take us back in time while the waves wash away all worries.

Hank, Sam and Nick chilling on the beach in OBX….

Pool time at OBX….. Nick says, Life is good!

Hope you enjoyed a slice of the good ole summertime.  That’s what’s in my noggin this week.  Time to slather on the sunscreen, blow up the beach balls, spit some watermelon seeds and enjoy the fireflies dancing in the evening sky…..  Looking forward to visiting a new coastline in Oregon for a family reunion and another trip to the OBX! Until next Monday, I hope your summer memories are  sunny, warm and relaxing.

Cheers!

~Teresa

Posted in Autism, Behavior/ ABA, Fun Side of Nick

Blog # 10 Nano Second!

Posted on by Teresa Unnerstall

Last Friday, Nick and I celebrated the end of school with a trip his favorite eatery, Taco Bell.  I like the one off 75th street in Naperville because there are no fire alarms in site for him to grab.  Yes, Nick has an obsession with fire alarms.  Since 3rd grade he has pulled 25 of them total.  For the record he has only got me twice and it only took a nanosecond!  Nick is always looking for the opening, that one moment when you aren’t paying attention.  That is the instant when he will strike.  The first fire alarm pull on my watch happened as I was fumbling to get my keys out of my purse.  He lunged across my body and clawed at the alarm before I could even try to block him.  Yes he’s that fast!

The object of his envy…..

So back to Friday lunch, I was glancing at the menu board to find something remotely low calorie when Nick grabbed a set of keys that a man in front of us had set down on the counter next to his newspaper.  Just before he pushed the red panic button on the remote I scooped them up.  Mom 1, Nick 0!

If you are around Nick for any given period of time you develop razor sharp reflexes. Let me put a lens on this. Here is a series of encounters that happened just this week.  On Sunday, my husband Al left Nick inside while he rolled up the hose reel. In merely two minutes he came back into the kitchen where Nick had wildly ransacked the refrigerator leaving the door wide open.  He had pulled out several things including two bottles of salad dressing.  The ranch dressing rested on the island with the cap off and was only spared because it was nearly empty.  Clearly, that wasn’t satisfying enough. But the full bottle of Asian Sesame was wrapped between his hands, turned upside down while he stood there choking it like a chicken as the rose colored liquid drained onto the floor.  Nick 1, Al 0!

A few days later while rolling the garbage cans halfway down the driveway Nick thought it would be funny to push the garage door button (again with the buttons!)  I stopped short in my tracks sprinted back and ducked under with my heart pounding just before I got locked out of the house.  I won that round, barely!

On Thursday we had a nice visit with Rob, a former teacher/respite worker.  Incidentally, Rob carries the esteemed title of being #20 on the fire alarm pulls.  About halfway through our visit I began to hear the sound of running water from upstairs.  Moments later the pitter patter of Nick’s footsteps followed by what I can only describe as a dastardly laugh  as the vein popped out of his forehead.   Clearly he was delighted. Rob offered to go upstairs and see what was going on.  As he came around the corner back into the kitchen he stood there holding his flip flops which he had politely left by the front door. They were dripping wet!

Nick and Rob….

Oh and let me not fail to mention that Hank left his bathroom door unlocked. I had just mopped the floor…. Cue the sound of the glug, glug….glug of Crest Fluoride rinse spilling over the banister.

A few hours later… as I put the finishing touches on the master calendar…. I might have left my pen out while I put of load of clothes in the dryer….uh oh…Nick inserted his intents…

Which brings me to Saturday, what more can he possibly do?  Nick is crafty and as I mentioned before he is always looking to find your weak point.  On this particular morning I was trying to get ready to go teach a step aerobics class.  While upstairs getting ready, Nick was in the kitchen pushing the popcorn button on the microwave followed by the intercom button on the phone.  A few minutes later in the midst of putting on my lycra spandex he made a nice Jackson Pollack design using toothpaste which he squirted in a swirling and splattered pattern from the second floor….(yes, the usually dumping spot, I am thinking of putting a plastic baby pool down any day now.) Thinking that I was staying one step ahead of him I carried my coffee with me into the closet while I changed.  However I accidentally left the mug there as I went back into the bathroom and bam, that is when he emptied it out onto the collar of my warm up jacket.  Nick 4, Mom 0….

This is going to be a long summer!

Even with the cabinet door locks back on he still manages to find ways to dump.  His goal is always trying to get our goat (see blog # 3 for more of Nick’s shenanigans.) He is *nano second fast and he will get you. I would love to hear any fun stories you have of Nick pulling one on you.  Send me your experiences with Nick and I will write a follow piece with all of your perspectives. Please e-mail your encounters with Nick to tjunnerstall@comcast.net.

There are no lessons to be learned or wise words to offer this week, except to say that I know better. I should have found something for him to do while I was busy in my realm.  So this week I simply want to offer a slice into Nick’s world….the rest of us is just trying to keep up.  That’s what is in my noggin this week.  Until next Monday, may you be on point and razor sharp as you take on the week ahead.

~Teresa 🙂

* Nano Second according to Answers.com is One billionth of a second. Used to measure the speed of logic and memory chips, a nanosecond can be visualized by converting it to distance. In one nanosecond, electricity travels approximately a foot in a wire. Admiral Grace Hopper was famous for handing out strands of “telephone wire nanoseconds” to her audience whenever she lectured about technology. Holding the wire turns the unreal concept of a billionth of a second into reality.