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

Blog #23~ ABA: Down Syndrome and Autism

Posted on by Teresa Unnerstall

Blog #23~ ABA: Down syndrome and Autism

Last week I spent some time reading over the blogs I have posted thus far while tagging key words on each of them. I  thought it was time to give you an update on how Nick’s behaviors are going since Blog # 3~ Getting Your Goat https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/,  and Blog #10~ Nano Secondhttps://nickspecialneeds.wordpress.com/2012/06/04/nano-second/, .  In both of these, I run through a multitude of stories of how Nick has been dumping out anything he can get his hand on, pushing buttons, alarms and generally driving us bonkers.  If you have been reading these blogs you know we implemented some changes. If you haven’t then scroll back as they are golden!  Did they work? Verdict is……

Drum roll please…………………

Those negative behaviors diminished significantly. When it comes to dumping out a Costco sized (64 oz. oh my…) of Olive Oil amongst other things, that’s a BIG DEAL!

What works for Nick is Applied Behavioral Analysis, also known as ABA. Quick definition…..According to Wikipedia, “Applied Behavioral Analysis is a psychological approach that uses the theory of behaviorism to modify human behaviors as part of a learning or treatment process. By functionally assessing the relationship between a targeted behavior and the environment, the methods of ABA can be used to change that behavior.”  ABA techniques and principles can bring about meaningful and positive change in behavior.  ABA is used for behavior and skill building in the school and home setting.

I want to spend some time giving concrete information on this as I was lost when this was first brought to me.   Rewind to Pleasanton, California when Nick’s teacher threw out her ideas of behavioral management at a meeting when he was five years old.  It made no sense at the time.  I hope to put a clear lens on it now. This is what I have learned….

 5 Tips for Changing a Behavior:

1. Choose one behavior to increase or decrease and focus on that.

2. Find meaningful reinforces (verbal praise, small edible treat, and preferred toy)

3. Use behavior management techniques consistently in all environments.

4. Encourage positive behaviors and discourage negative behaviors.

5. Use your ABC’s:

A= Antecedent… What usually happens before the behavior that might set it off?

B= Behavior… What actually happens during the behavior?

C= Consequence…What reactions follow from the child and those around after?

So, how did we get the dumping to diminish?  First step was to look at the antecedent. By keeping a log of his behaviors every time he dumped, I began to see a pattern.  Nick usually dumped things out when he was bored or we were trying busy trying to get out the door. This summer there was a lot of down time and Nick took advantage. So, I got him out of the house more on community outings like the park and going out to eat. This helped to occupy his time plus he came home more chilled out.

He is just a swining…. swingin….Oh yes!

At home Nick needed some redirection when we were busy getting ready for work or a tennis match.  I found a hook, a preferred activity.  He loves watching funny cat videos on You Tube.  A highly preferred activity (something he craves) used sparingly captivated him.  In addition, it helped to simply avoid the antecedent.  By putting the child proof locks back on the cabinets this shut a lot of that temptation down. That works unless you leave the cabinet open.  Insert picture of me in the closet shielding in my eyes as Nick comes at me with his finger on a can of hairspray. 

My final suggestion is to use the distraction method. Let’s say Nick goes for a cup of coffee.  I know he is going to dump it.  Immediately I do something funny like bonk my elbow on a chair and he laughs as I scoop up the mug.  Or maybe just say, “Mom’s coffee, give me, thank you.”  The distraction technique works especially well if a behavior is escalating to a possible meltdown, a quick slapstick move or joke can help change the focus quickly.

Secondly, let’s look at the actual behavior.  Nick has that can of hairspray in his hand ready to fire off a round into my eye. I use a hand over hand technique and redirect him to spray my hair.  Or I take his hand and escort him back to the bathroom to put it in the cabinet.  The point is to stay calm and not draw more attention to the behavior because that is EXACTLY what he is yearning for.

Regarding consequences the method is swift and simple.  Dumping equals clean up.  I point to the stack of gym towels and Nick gets one and cleans up the mess.  No words are spoken, no praise is given. No matter what it should be a natural consequence and never a punishment. There is a time for praise and it is given freely and enthusiastically when Nick completes a chore or task that is a preferred activity. There are many more behaviors than just dumping and how to handle them, stay tuned…..I will post more!

The days are running smoother but not without bumps in the road.  Last Friday, my friend KB was over and in a matter of two minutes he grabbed her car keys and tried to push the alarm on the remote. Then he snagged her iPhone and made a beeline laughing as he headed over to try and drop it  into the toilet.  (He was being ignored and wanted us to know it.)  Nick followed up this weekend with giving the cat a special dandruff shampoo treatment.  He found the Head and Shoulders Shampoo hidden behind the towels.

 Plop, plop…..No dandruff for Miss Mellie anytime soon……Poor kitty 😦

“Oh wait ha ha, I think I will plop foamy soap on my head now, this is fun!”…..Says Nick!

By the way the cat is fine…… and flake free

I knew something was up on both occasions with KB and Miss Mellie.  Two words, devilish laugh.  That can only mean one thing; he has been up to no good.  Bottom line we have made strides…..  His behavior plan is always a work in progress, like *painting the Golden Gate Bridge it is never ending.

*

In the meantime I will  try to stay one step ahead of him.  That’s what is in my noggin this week.  I’d love to hear what you want to know about Nick and how we navigate his world living with Down syndrome and autism.  Until next Monday, take care and enjoy the changes coming as fall greets us.

~Teresa

*Regarding the Painting of the Golden Gate Bridge……There are a couple of misconceptions about how often the Bridge is painted. Some say once every seven years, others say from end to end each year. The truth is that the Bridge is painted continuously. Painting the Bridge is an ongoing task and a primary maintenance job. The paint applied to the Bridge’s steel protects it from the high salt content in the air which can cause the steel to corrode or rust. When I moved out there I wondered why it wasn’t painted Gold but here is the deal…Actually, the term Golden Gate refers to the Golden Gate Strait which is the entrance to the San Francisco Bay from the Pacific Ocean. The picture above is one I took when we lived out there. 🙂

Posted in Behavior/ ABA, Feeding, Personal Hygiene, Toileting, Recreation/Leisure and Special Needs

Blog #22~ Grooming 101

Posted on by Teresa Unnerstall

Blog #22~ Grooming 101

A few weeks ago in Blog #18~A Cut Above, I wrote about the joys ha ha… of giving Nick haircuts along with a few other grooming issues.  I thought this week I would expand with some information on overall grooming and fostering independence in hygiene and dressing routines. While it seems like something we all just do without thinking, it’s not as simple as that.

Well, maybe it is for a cat. Miss Mellie makes it look so easy and peaceful……

So where to start, tooth brushing, bathing, washing face and hands, dressing?  Several years ago, a wise autism specialist once offered this piece of advice.  “Pick one thing on the day you pay your bills each month and that is what you will work on with your child until the next monthly bill cycle.”  This helps you as a parent to focus on one goal without being overwhelmed.  The second *pearl of wisdom I have learned is to make sure you have a block of time where things are relaxed to teach these skills. Mornings are out for us since the bus gets here at 6:30 a.m.  Uh, no are you kidding me, 6:00 a.m. is not going to be a teaching moment.

Let’s start with brushing teeth.  I like use flip up caps on toothpaste as it is easier for Nick to open up on his own.   By the way, why does the toothpaste fall off a toothbrush so easily but it sticks to the sink like glue?  We use a lot of visuals to help Nick navigate his world.  Autism 101, if he can see it, he will understand it.  Here is the step by step sequence we use for brushing teeth.

I found these sequence boards in a software program called   “Functional Living Skills and Behavioral Rules.”  There are tons of visual prompts in this program!

This software program has step sheets for everything from showering to feminine hygiene steps.  In addition, it offers daily living schedules, community skills, and behavioral rules.  Another great resource is a book by Mary Wrobel called “Taking Care of Myself.”  This is a must-have for a parent with a special needs child. For showering the steps are posted on the outside of the shower door facing in for Nick….

I wrote the steps on the back. To prompt I slide my fingers to each the picture while Nick is showering….

Here are a few other visual ideas for shower and shaving …..

Over the years I have also used a lot of modeling of these tasks along with the visuals.  During Nick’s shower, I often pretend like I am washing too. Why, because Nick can get lost in “receptive words”.   Too much verbal cues get him caught up in the shuffle.  Wiki.answers.com explains it as this: “Receptive language”  is the comprehension of language – listening and understanding what is communicated. Another way to view it is as the receiving aspect of language. (Sometimes, reading is included when referring to receptive language, but some people use the term for spoken communication only.) It involves being attentive to what is said, the ability to comprehend the message, the speed of processing the message and concentrating on the message. Receptive language includes understanding figurative language, as well as literal language. Receptive language includes being able to follow a series of commands.”  So for Nick, it helps to use fewer words and focus on the visuals and modeling the desired behavior. For example rather than say, “Nick you need to get the shampoo and wash your hair.” I would either point to the shampoo bottle and mimic the action or simply say “Nick, wash hair.”  It is succinct and he gets it.

Time for me to get clean and slicked up!

The goal is to work to diminish the cues whether they are verbal, modeling or visuals. This idea is known as “Least Restrictive Prompting.”  Teaching a behavior starts with putting your hand over the child’s hand to show them how to do it.  Then literally you begin to fade back.  From there your hand is over the child’s wrist, then elbow, upper mid-arm, shoulder and finally letting go and being within close proximity.  The end result is to help him foster independence in all of these tasks.  To date, Nick is able to get his grooming bin out of the closet and follow a routine with success.  He also has hygiene built into his curriculum at school.

Here is Nick’s grooming bin. He also uses body spray but that is kept under the sink that has a childproof lock since he likes to take it and spray all over the place including right into your eyeballs (see more of these shenanigans in blog #10~ Nano Second.)

Last week in Blog #21, I mentioned the word “buck naked.” Nick has absolutely no problem undressing.  However getting dressed can be tricky.  He often puts his pants and shirts on backward still to this day.  By laying the clothes out a certain way, Nick is more easily able to get this done correctly. Note the shirt is laid out backwards so he can grab it from behind and pull it over his head.  The pants are laid out over his feet straight up so he can put one leg in at a time….

 Voila, it works! 🙂

Here is another idea.  Put a smiley face on with painters tape on the tag area and cue this to be in the back.

Bottom line is this…. As Nick’s mom, the biggest gift I can give my son besides love is to teach him to become independent in all of these tasks.  He will gain confidence, pride and hopefully a spot in a group home someday.  Not every day goes smoothly.   Sometimes we just have to get out the door, and if Nick is moving slowly I don’t force him to do it on his own. Pushing Nick too hard can lead to frustration on both our parts so I pick my battles.  Easy as a cat taking a bath, no but it can be done.  That’s what is in my noggin this week.  I hope the Grooming 101 tutorial was helpful and maybe enlightening.  Make it a good one and until next Monday and here’s to looking slick and sharp.  After all, as the ZZ Top says….”Every girl’s crazy about a sharp dressed man….”

~Teresa

*Pearl of wisdom according to wiki.answers.com says that “The biggest connection I can see between a pearl and wisdom is they both take a long time to develop. Also, both a pearl and wisdom seem like small objects but are both very valuable, and they develop from grit

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #21~ What Is Normal?

Posted on by Teresa Unnerstall

Blog #21~ What Is Normal?

What is normal?  To quote Whoopi Goldberg, “Normal is just a setting on a washing machine.”  Normal is boring, average right?  So why do I crave normal?  I was driving through my subdivision the other day and I saw a group of high school boys on bikes and skateboards. I found myself thinking, that’s all I really want….to see Nick doing something like regular kids do every once in a while. 

Last Friday, my neighbor’s son came over after school.  I witnessed normal. I handed him the remote and he sat down and watched a Chuck Norris movie.  Later, while he read a book Nick stood by rocking back and forth like he often does. He then asked me, “Why does Nick always stick his hand down his pants when I am over here?”  Oh, I guess that is not normal. 🙂

In Blog #20 I wrote about some of the activities Nick still enjoys and how they are far from being age appropriate.  I want to expand a bit more on it this week.  If you read last week’s post, I bet you are wondering what he is watching right now?  That’s right he is still on a Thomas the Tank Engine kick. I crave normal because there is noise and chaos living in Nick’s world. Let me put a lens on it. The boy pushes buttons all kinds….. of course fire alarms being his favorite. 🙂 Besides the Holy Grail that being the fire alarms, he also enjoys the phone intercom, volume on the remote control, and popcorn button on the microwave. Is it normal to have to keep a cup of water in your microwave so it won’t burn up? Is it normal to hide your car keys up high on the kitchen cabinet so your child doesn’t set off the car remote alarms?   Doesn’t everyone have to hide their cell phone so their child doesn’t send it swimming in the toilet?  Speaking of toilets, is it normal to call the plumber to unclog something your eighteen year old flushed?  Sergio, my plumber had a good laugh.  He told me in his Hispanic accent, “You can still wear theeeese glasses they were in clean water, not poopy water.”

That’s where my readers ended up!

Okay, my mom said I use to take the knobs off the high fi and throw them in the toilet but I was only three.

Over the years strange things have gone on with Nick in our house. I can still remember Nick’s “naked phase” about seven years ago.  It was getting dark outside and his older brother Hank came in from the front yard.

“Mom, I could see Nick from the cul-de-sac.  He was *buck naked at the top of the stairs holding his wang.”  Sure enough I came out of the kitchen to see a prepubescent Nick stripped down with the light of the chandelier illuminating his naked body groping his you know what. I ran over and grasped the dimmer switch and pulled it straight down. We shook our heads. I knew exactly what Hank was going to say. “That boy ain’t right.” Its what we always say when Nick does something strange, call it our defense mechanism.

I am not sure what was going through Nick’s mind at that time or during any of his wacky stunts. I tried to express it with art when Nick was in third grade.  Remember the spoon man project?  The kids mold a clay head and it is attached to a spoon that sits on top of a platform.  It is up to the students and parents to make the spoon man come to life. This won a spot in the school district art show that year.

Note the artful details around the neck line.  Nick use to chew his shirt and it was always wet and mangled……

I wish I could crack open his skull and see what’s inside.  What I figure is that he knows that he is a funny guy. I wonder what it would be like if he just had Down syndrome and what he would bring to the table. I did stumble on a cool quote by actor, Chris Burke who starred in the hit television series, Life Goes On.  This made me smile…. 🙂

“Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways that is the way I can describe it. I have a normal life.” ~Chris Burke

It’s hard not to get swallowed up in Nick’s crazy world. Ordinary is welcomed.  “Don’t take normal for granted.” That’s what the mother of a 7 year old cancer patient said on the radio during a children’s cancer fundraiser event last week.  I get that, totally.  But then again, if I had normal I wouldn’t be writing these stories would I?  I wouldn’t have fun pictures like these to share. This is what he was up to this weekend……

I told Nick to get some clothes out and get dressed…..Looks like he is ready for the whole week…. 

For the record that was 11 shirts, 7 pair of pants and 3 pair of undies…..

Nick at the park walking swift and robotically with his arms up like a Bears linebacker….

Move over Brian Urlacher, Nick is poised and at ramming speed.

Nick pretending he is drinking two cans of mushrooms, he just fills up the canvas with silliness…..

When you rock the extra chromosme you can easily sit like this……He’s still very bendy…..

So perhaps normal is just a setting on the washing machine and nothing more.  I have to remind myself to embrace chaos and be content with all the colorful moments that Nick has brought into my world.  That’s what is in my noggin this week.  Have a great one and until next Monday, may your canvas be filled with hues of many brilliant colors. 🙂

~Teresa

*Buck naked.  I always wondered if it was that or butt naked. I guess I’m not the only one. Here’s what Wiki.answers says:

“It is both. The word “buck” or “buff” is thought to be from the color of a buckskin, which is the pale tan color of European skin – this gives you “buck naked” and “in the buff.” “Butt naked” refers to the fact that your buttocks are not covered.”

I have always heard it “buck naked”. I don’t think it refers to any color at all; the phrase was originally meant to compare one to an “Indian buck” as the men were called many years ago in a less politically correct age. They were commonly thought to be “naked savages”, whether they were in fact or not. Thus, “buck naked” implied being without clothing.

 

 

 

 

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, Fun Side of Nick

Blog #16~ Up, Up and Away!

Posted on by Teresa Unnerstall

Blog #16~ Up, Up and Away!

A question I often get is, “How does Nick do traveling and on airplanes?” I mean he has Down syndrome and autism, really can you do that?  Short answer, he does really well.  But that has been crafted over many years.

It wasn’t always so easy.  An overseas flight from San Francisco to London with Nick (then a five year old) and not yet toilet trained was daunting.  Prep for such an endeavor started with a bland diet twenty-four hours before take-off.  Follow that up with a dose of Imodium AD to act as a cork, much like the bears that go into hibernation with their butt plugs in place.  While this takes care of #2’s, the issue of #1 had to be addressed.  We padded Nick down with 5 pairs of Pull-ups and as the flight progressed, I would take him to the bathroom and like an onion skin, peel the soaked ones off him.  Naturally the backpack contained dry pants just in case, tricky but it can be done.  It also helped that we flew Virgin Airlines. Richard Branson does know how to fly his customers in style.  Cheers to the free cocktails, and private movie screens at every passenger’s seat!

 We give a thumbs up to Richard Branson….

The iconic Tower Bridge in London……..

Last weekend, we took off for the Overbey Family Reunion held in Oregon. Here is a glimpse of an experience traveling with Nick. I love all the great people watching, don’t you?   Yes we make fun of people and give them nicknames.  First stop through security where the perfect gag me, “VIP” family cuts to the front of the line with their noses up in the air. (Insert my eye roll, gag me, whatever here “Oh you are first class and we are steerage.”) My older son rattles out, “I’m pretty sure their shit doesn’t stink.” No kidding Hank.

Nick compliantly takes his shoes off and sets them in the plastic bin. We sandwich him between myself and Hank who acts as catcher after his bro walks through the metal detector (yes, we play the special needs card so we can bypass the body scanner.)  On the other end while putting on our shoes Al points out a man sitting next to us in a green golf shirt who has a dollop of white shaving cream on his ear about the size of a dime.  I try to keep a straight face but it’s hard when I glance at Hank who has raises that smile of his trying his best to suppress a laugh.

Now the counting begins.  It’s 6:30 a.m. so the tally is sluggish.  There are usually two looks we get when people take notice of Nick.  We have named them “Curious Stares” and “Sympathetic Smiles.”  By the time we get ready to board the count is:

 Curious Stares=5

 Sympathetic Smiles=7

We proceed down the jet way scanning for any red buttons that Nick might lunge across us to push.  Speaking of buttons, there is one final count we keep is “Call Button” pushes.  Nick takes the window seat and I am next to them and there will be none on my watch.  The flight is packed to the gills.  I look over at Hank and point out a dude that looks just like Rob Zombie.  I look at him and say, “Two Lane Blacktop” (a Rob Zombie song) and he gives me the head nod.

Besides giving nicknames, we also have “code words” for the people we observe.  I’m not sure I should divulge these but I will offer up a few.  The first one is “TTH” which means “Trying Too Hard.”  You know those people dress over the top or way too young for their age. They scream look at me for attention.

Then there is “HM” which stands for “High Maintenance.”  Sure enough as the flight attendants are reminding everyone that it is a full flight and only put larger pieces in the overhead bins I look up at an young Asian lady who is cramming a tiny draw string “Cats” mini backpack along with another satchel and yet a third; Chicago’s infamous Garretts Popcorn.  She is completely oblivious to the passengers who need to get around her to take their seats. Total HM!

Nick loves the part when we take off.  He gets jazzed up in his seat as his arms open airplane style swaying his body back and forth with a big smile. By the way call button pushes=0.  (Last year while sitting next to Al, who kept dozing off he hit it 5 times and had the cabin crew and people around us laughing.) Besides a handful of guttural burps, wiping a booger on my shirt and incessantly uncrossing my arms that I wanted to fold across my body, he did great.  He was much quieter than “HM” who just had to retrieve her Garrett’s Popcorn out of the overhead bin and eat it loudly opening the brown paper bag and folding it back up over and over again.

Wheels down, Portland, Oregon= Columbia wear…. Snapshot in the airport:  Hippie and granola looking peeps wearing straw hats, hiking boots and brown socks with guitars and pup tents strapped to their back like sherpa’s. It is a broad brush of odd balls who were walking around aimlessly and headed out west to the end point where the rocks meet the Pacific Ocean. Just like the Lewis and Clark’s expedition which ended at Seaside they settled here, a final destination. I found this area and the people fascinating.

View off Highway 101….

Famous landmark, Haystack Rock with Hank….

By the way, for those of you keeping score at home, the final tally upon retrieving luggage and making our way to rental car area:

Curious Stares= 15

Sympathetic Smiles=17

Nick helping with luggage at baggage claim….

These looks barely faze me.  Eighteen years have hardened my shell. People will stare and act accordingly.  Bottom line, I feel solid in the fact that we have always included Nick in our travels here and abroad. It is not easy but it can be done. We made it thru another crazy mix of curious stares, sympathetic smiles and had a great experience with Nick hanging in there. 🙂

That is what’s in my noggin, sometimes the journey over can be one of the most memorable parts of a vacation. Robert Louis Stevenson said it best, “For my part, I travel not to go anywhere, but to go. I travel for travel’s sake. The great affair is to move.” Until next week remember there is great beauty out in the world, get out and explore.

~Teresa

Lewis and Clark…….

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.