Tag: Down syndrome and autism

Posted in Government/Legal Matters Related to Special Needs

Blog #44~Who’s in Control?

Posted on by Teresa Unnerstall

Blog #44~ Who’s in Control?

Last Thursday a longtime friend that I worked with at the Austin YMCA posted a question on Facebook.  Jim P. has been on a spiritual journey and asked how everyone deals with control?   Ironically, I could not have been in any less control than that moment.  Not having control is scary.  It means you have to leave things in the hands of others.  It requires you to have faith that God will take care of you and the problem at hand.  Nick has been receiving state funding through a child based waiver under the umbrella of Medicaid.  The funds are used for respite care which allows me to still teach my classes and go out and have a life on occasion.  The Department of Human Services (DHS) had sent out a renewal form that I filled out and sent certified mail weeks ago.   Bases covered, I was on top of my game.  Not so fast…..

I called DHS the day before the end of the month to check on the status of the renewal.

“The lady I talked to a few weeks ago said she would change my son from child to adult waiver in the system pending the renewal form being sent in.”

DHS operator replied, “No she can’t do that for you.  A new form must be submitted.”

Oh crap, I am going to lose the home based waiver and have to get back in the queue*.  This could take months. Last time it took 9 months to process, I am F’d!

I hung up the phone, confused and wondered why I had not been informed about this.  I immediately contacted my friend Nancy Wilson that I’ve known through The National Association for Down syndrome (NADS.) She has a consulting business called A New Ray of Hope, www.anewrayofhope.com.  She knows her stuff on health advocacy, education advocacy and is a resource specialist. Her son, Jeremy has a dual diagnosis of Down syndrome and autism and is close to Nick’s age.  Nancy laid out the facts for me clearly and succinctly:

1.  DHS is a big umbrella with many programs under it.  

2.  Medicaid/Medical Health Benefits is a program through HFS – Healthcare and Family Services.  

3.  Medicaid is a requirement for any DD (Developmental Disability) services.

4.  SSI (Social Security Income) is NOT a requirement for DD services

5.  Medicaid is redetermined when a child reaches the age of 19

6.  The respite hours is Home Based Waiver funding under the DHS Umbrella, it is a Medicaid Waiver program through the DD Division (Division of Developmental Disabilities) for which you work with a PAS agency.

7.  For HFS/Medicaid you go through your local HFS office.  This is COMPLETELY separate from Home Based Waiver Services through DD and also COMPLETELY separate from SSI which is through the Social Security Office. 

8.  Medicaid is much easier to get if you have already been approved for SSI because SSI does a thorough redetermination of benefit eligibility for developmental disabilities

9.  That said, you do not have to have SSI to get the Home Based Waiver

10.  Who is telling you that he will be dropped?  Pact?  Little City?  Medicaid?

I was caught in the tangled web of government bureaucracy.  It was the end of the month, and the home based waiver was ending.   I had to scramble.  Nancy sent me the link to fill out the application for adult Medicaid.  I made a big pot of coffee, rolled up my sleeves and got to work.  My only hope was to hand deliver the application into the DHS office that day so it would be stamped before his child based waiver expired. I entered the crowded, dingy office.  It was jammed with over a hundred down trodden people whose glazed faces exhibited despair sitting slumped in plastic chairs. I followed the Pakistani gentleman in his native dress and waited behind him in the line. The lady in front of him held a baby and had two small children clinging to her.  She was in desperate need for food stamps but was turned away.  My problem seemed trite in that moment.

I stepped up and the clerk informed me that I probably wouldn’t get the adult home based waiver anytime soon since Nick didn’t have SSI income.  What, that’s not what Nancy told me, again the mixed messages, WTF?   She took my paperwork and looked somewhat surprised that they were in good order and fully completed with all copies attached (Nick’s birth certificate, SSI card, insurance card, checking account information and his state ID card.  No he doesn’t have a driver’s license imagine that.🙂  She stamped the date February 28, 2013 and put it on top of one of the many foot high stacks of applications.  I said a quick prayer as she set it on top of the pile.  Please God, let this go through quickly.

Adversity can test our limits but it also teaches us lessons.  What did I learn?  When you feel like you aren’t getting the answers you need reach out for help.  Nancy has been a mentor and resource that has helped me navigate Nick’s path filled with its cobwebs of confusion. The red tape is daunting as your special needs child becomes an adult. Moving forward we will be enlisting a special needs lawyer.  Secondly, when your child with special needs turns 18 years old run, don’t walk to fill out the SSI application.  I stalled having heard horror stories of the process. While I have filed for SSI just over a month ago I have no answers yet.  Last but not least, never assume! Back in college I worked at Super X Drugs. Rex, (or as I called him Super Rex) was my boss. He gave me this sage advice. “Never assume, it makes an ASS-out of U- and ME.” 

That evening Nick wasn’t feeling in control.  I had forgotten to run the dishwasher and he was unloading the dishes. As I took a dirty bowl out of the cabinet and put it back in the dishwasher he lunged at me pinching my hands hard until they bled.  He was mad that I was undoing his work. Later in an act of defiance he emptied out my red nail polish from the second floor.

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Clearly Nick just like the rest of us wants to feel like he is in control.  The last day of February was one of the worst that I’ve had in a long time. Late in the evening, I sat on the couch by the fire with a glass of wine and managed to relax and feel a wave of comfort and peace.  Sometimes what you need most is to find those who can support you along with a nice glass of wine. Oh and a whole lot of cotton balls and nail polish remover.

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Poor cotton balls lie there red and beaten like fallen soilders having done battle. 🙂

That’s what is in my noggin this week.  Until next Monday, cheers and let me know how you handle things when you are not in control.

~Teresa

 

Posted in Speech and Occupational Therapy

Blog #38~ Speak Easy

Posted on by Teresa Unnerstall

Blog #38~ Speak Easy

Speak easy……If only Nick could….. But having Down syndrome and autism has led him down a different path.

Last week I participated in the parent interview for his speech evaluation.  One form used in the evaluation was called “Expression of Intentions and Emotions.” 

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Communication isn’t just about using words.  As you can see on the chart there are many ways of making needs known.  Not all are positive; in fact Nick uses many of the negative presymbolic means (tantrum, aggression, and self-injury) to get his point across when he is frustrated or angry.  When Nick is pissed off he will grab his cheek and pinch it really hard several times over.  This is a warning sign of escalation and possible meltdown that has to be redirected quickly.  My go to for a redirection is doing something to distract him or embarking some humor (banging my elbow and saying ouch) always makes him laugh. As I have mentioned in past blogs, every behavior even the negative ones are communicating something.

In the same vein he can show love without uttering one word.  He will come up randomly while I am working a give me a sweet peck on the cheek.  I love his kisses, so sweet.

So back to the chart above and a few more examples of communication.  When Nick request food or objects he will use “eye gaze.”  I can hold up a box of Little Debbie Swiss Cake Rolls and Oatmeal Creme Pies.  All you have to do is watch where his eyes will follow to know which one he will choose.

I’ll take one of each….hee hee….. 🙂

little debbie cakes

He will also use “pointing.”  Nick and his speech therapist Brian’s hands made the wall in the lobby at Suburban Pediatric Therapies………

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 He also demonstrates by  “pushing away” along with “signing” the word no.  In addition, he incorporates his picture icons to make requests.  During the evaluation it is clear that his strengths lie in his good eye contact, receptive language (listening and understanding what is being communicated), usage of icons (which in a way has become his voice) and his ability to seek attention.  He does this both appropriately (by helping out around the house and taking great pride)/ and inappropriately, (fake sneezing, burping, farting, dropping and dumping, etc….) If you want to get a real taste of this see Blog #3~Getting Your Goat located in the April archives and Blog#10~Nano Second found in the June archives for more about his shenanigans. 🙂

Silly fun fake sneezing with Aunt Laura…..Aaaa-choo, that’s funny stuff!

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The weakness for him lies in “joint attention.”  He can’t verbally comment on an object.  I can prompt him by asking him if he likes let’s say the movie “The Nutty Professor.” He can respond with a smile and a thumbs up. Actually that is what he is watching this morning.  He was laughing earlier at the dinner table scene (where Eddie Murphy plays almost every character in the family.)

Nutty Professor family

Of course there is some farting involved which always cracks Nick up.  I think he gets that from my Dad 🙂  I get a kick out of Nick, what makes him tick along with what makes him laugh.  He does have many words he uses and says pitch perfect.  However, he is unable to string together more than two or three words at a time.  If I ask him if he “needs to go potty”, he might respond with, “No need, potty.” Most likely he is following my verbal model on this. *Speak easy, no but language can be unspoken too.

not speaking quote

So we will formulate new goals to work on for speech therapy after the evaluation is completed. We will continue to help him communicate his needs, wants, frustration and disappointment. And so I leave this piece by quoting the Nutty Professor Klump, “You got to keep on pushing, pushing!”  That’s what is in my noggin this week. 🙂

~Teresa

*Speak easy: According to Wikianswers.com, A speakeasy was an establishment that was used for selling and drinking alcoholic beverages during the period of United States history known as Prohibition (1920-1933, longer in some states), when the sale, manufacture, and transportation of alcohol was illegal. The term comes from a patron’s manner of ordering alcohol without raising suspicion – a bartender would tell a patron to be quiet and “speak easy”.

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #33~ Stuff on my Cat

Posted on by Teresa Unnerstall

Blog #33~ Stuff on my Cat

December is such a crazy, busy month so I am going to keep the posts light and quick.  I have yet to talk about one important member of the family.  That is Miss Mellie, our 16 year grey tabby.  She has a rough life following the sun coming into the house and basking in the glow……

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When she’s not soaking up the rays she is usually on somebody’s lap.  Here she is not quite a year old with Hank, age 4……

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When the boys were toddlers I had an orange tabby named Woody who lived to the ripe old age of 17.  Woody didn’t have much to do with the boys. Note Nick again leaning on his brother.  You can see his low muscle tone which is a characteristic of Down syndrome…

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My sister, Laura pointed out a great website called “Stuff on my Cat” a few years back.  This site is a hoot, check it out at www.stuffonmycat.com.

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For as long as I can remember we have been putting random things on our cats.  By the way cat lovers, they also have a book and calendar too. We’ve had a lot of fun with this.  So have Hank and Nick!

Hank put a toy cowboy hat on top of Miss Mellie. Howdy partner…… 🙂

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Then he put a Superman cape on my sister’s cat, Paco……It’s a bird, it’s a plane, no its Super Cat!

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Nick has followed suit with putting stuff on our cat… not always to Miss Mellie’s liking.  He likes to give her love pats and he thinks it’s hilarious to sneeze on her too.  Nick has Down syndrome and autism.

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Poor Mellie has fallen victim to some of Nick’s dumping (Blog #3 Getting your Goat has the complete list of dumps!)  Let’s see…. baby powder, fajita seasoning, PEC icons, then splat…. Head and Shoulders shampoo….

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Nick thought that was so cool he gave himself a couple of dollops…… 🙂

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Here kitty, hope you enjoy one of my stim toys…..

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Who needs a Velcro strip, Nick just uses the cat…..

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If there are no other laps available she will get desperate and settle for Nick.

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Mellie is pretty lazy but there are two things she will jump up for.  The sound of the can opener sends her sprinting to the kitchen.  “Oh yes it must be tuna!”

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The other is the dryer door closing.  That means warm laundry and maybe a dryer sheet on her head………

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Meow to the Easter Kitty…..

mellie with ears

Mellie stoned on Christmas cat nip…..

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She seems to be doing well despite the stuff we put on her.  That’s what is in my noggin this week.  Until next Monday may you take time during the holiday hustle and bustle to enjoy what makes you happy like a good cozy lap!

~Teresa

Meow….. 🙂

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Posted in Autism, Down syndrome, Fun Side of Nick

Blog #28~ Halloween Costumes and a Special Needs Child

Posted on by Teresa Unnerstall

Blog #28~ Halloween Costumes and a Special Needs Child

I wanted to lighten things up this week and show some of the fun Halloween costumes the boys have worn over the years.  I love dressing up for Halloween. You can show your alter ego and reinvent yourself.   It has been a blast creating looks and finding unique costumes for the boys.  Having a child with special needs which include sensory issues can make it challenging.  My son, Nick has Down syndrome and autism. He doesn’t tolerate masks, barely wears hats and gloves much less the extra accessories.  Needless to say, he has never dressed up as a pirate.  Here’s a look at some of the Halloween costumes the boys have worn.

1994~ Nick’s first Halloween.  He’s 8 months old. Grandma Theresa had these made for the boys.  Look at my cute lil pumpkins…… 🙂

The following year we went with the cowboy theme.  Hank and Nick like me, are native Texans.  Yee ha boys…….

I am not the only one who likes to dress up.  So does my brother Tom, who decided to go as a baby in the picture below.  I am pretty sure that’s not milk in his bottle. They took the wagon for  Nick (who wasn’t walking yet) and most likely for that cooler by my brother’s feet.  Also in the picture is Hank went as a pirate…Arrrrrrrrrrrrrrr.  The little dinosaur is my nephew, Austin.  🙂

 

The next few years we lived in Livermore, California. Hank looks menacing while Nick made a sweet, little M&M.   Wonder how long those gloves stayed on Nick?  Answer:  Long enough for me to take the picture!

Nick got such a kick out of his brother’s mask.  Hank was in the scary costume period like most boys go thru.  Al is sporting his old Mardi Gras wig….

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Here’s a close up of Nick.  “I’ve cast a spell on you!”

Halloween 2000 in Livermore, Hank with his Dad…….

And Nick made an awfully cute Sponge Bob (minus the gloves)

Halloween 2001, we had moved to Chicago where you have to bundle up for Halloween.  Hank was so excited to be the creepy clown and scare his friend next door. Does anyone else have a creepy clown phobia?  What I found for Nick with having Down syndrome and autism was the necessity to keep the costumes simple.  There are many costumes that just slip over his head in one piece and without covering the face. These seemed to work the best for him.

Pizza anyone?

I had many neighbors tell me that they looked forward to seeing what the boys were going to be for Halloween.  Hank in particular allowed me to get more creative during his early teen years.

Hippy Hank looking groovy with his friend Bobby…..

Nick was a referee.  Guess how long the hat stayed on?  Answer: Long enough to take the picture 🙂

This could be one of my favorites, nerdy Hank.  We had a lot of fun putting this look together.  By the way those glasses were his Dad’s (the Clark Griswold look from the late 80’s) I’ve always saved all kinds of things like this  over the years to enhance Halloween costumes.  By Hank’s side is Seargent Nick ready to report to duty…..

Hank went a totally different direction the following year…………..

This costume seemed to suit Nick who loves the farting humor, 2009……

Halloween 2010, It’s Super Nick!

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Nick is pumped up for Halloween this year….. 

Guess how long the dew rag stayed on his head?  Answer:  Do you even have to ask? 🙂

It’s been fun pulling out the photo albums and taking a trip down memory lane.  The boys are all grown, but they both still dress up for dances and parties at school.  You can get pretty creative finding costumes for a child who has special needs and sensory issues.   That’s what is in my noggin this week. Until next Monday, enjoy your Halloween under the full moon and watch out for those creepy clowns!

~Teresa

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.

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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 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, 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 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, Down syndrome, Fun Side of Nick

Blog # 9~ Brotherly Love

Posted on by Teresa Unnerstall

Nick’s final exam schedule came home in the back pack last week.  I showed it to his brother, Hank who had just finished with his finals at NIU.  We both had a good laugh.

“Mom, remember my junior year of high school and those finals I had? They were a bitch!”

“How can I forget?  That one day you had a final in Trig and English.  Nick had the Blueberry Hill breakfast final.”

“Yea then the next day, it was Genetics and History and Nick’s was like Naperville River walk and shopping.  That was so pathetic!”

Each day that week, Nick got off so easy compared to Hank.  The rivalry of brothers extends past the boundaries of normally developed children.  So this week is all about brotherly love.  One question I am often asked is what the relationship is like between the two.  Rather than try to answer this I decided to go to the source, Hank.  Here is his perspective on the relationship with his younger brother.  Hank is going to be a sophomore at Northern Illinois University (NIU) and will be turning 20 next month.  The boys are 19 months apart in age.

My Brother Nick, By Hank Unnerstall:

“My brother Nick is not like any ordinary brother. There is an extra chromosome in the 21st pair which is the result of Nick having Down syndrome and later, an autism diagnosis that separates him from normal people. Having Nick as a brother has made me open my eyes to life in general and the traits that make me the man I am today.

Some of the earliest memories with Nick start from when I was around 5 years old. Being that young I did not fully understand why my brother was different but I accepted it because he is my brother.  I remember when I began getting older and going to elementary school when my mom and brother would pick me up and drop me off at school. Nick would be doing his normal sound making and hand clapping in public that would sometimes embarrass me in front of my peers. I also recall the times at the old California house we had where Nick and I would start messing around and wrestling with each other but then Nick would take it seriously and start pinching me. His ways of fighting back around that time were much less harmful than it is now when he has one of his meltdowns or I like to call them “monkey boy” episodes. These memories are some examples of tough things in which I have had to deal with in which growing up with my brother.

Hank and Nick at San Francisco Bay….

It would be remiss of me if I didn’t mention a horribly embarrassing time.   Back around my freshman year of high school, Nick and his respite worker and I all went to Arby’s for a late lunch. Once we got our food we sat down, Nick started to make loud and disgruntled sounds when we put his food in front of him. I told him to be quiet in a not so nice tone. Next thing you know he became furious and proceeded to throw his food and random objects like trays, sugar packets and salt shakers all over the place.  We tried to calm him down but he was at the point of no return (aka monkey boy.)   I went on to restrain him and he was pinching, kicking and biting, anything to hurt me.  Somehow we ended wrestling around on the ground and to the other people in the restaurant it must have looked like we were fighting.  This was awkward and embarrassing for me because I was much bigger than him.  I knew it didn’t look right. I just wanted to leave and never show my face again.

That was the worst, or well at least one of them!

 But, there are many traits to Nick.   For example, he is usually a very happy and silly kid who always has a grin on his face. That’s why people love him at school and of course our family despite what we deal with when relating to Nick. Also, even though Nick has autism it does not stop him from being a socially engaging little dude even though he can’t speak. He loves to get attention whether it is him trying to act cute or to negatively do something to get ours. For example if we do not pay Nick any attention for a while he might spray shaving cream over the stairs.

Some of the best memories I can recall having with my brother can be the times where he will just sit next to me on the couch and watch TV with me and just chill out. Also I love to see him dance intensely while listening to the music that I provide him which is usually hip-hop/rap. Basically whenever Nick is in a good mood and happy he always knows how to put a smile on myself and many others faces. Having Nick as a brother has taught me to be a very patient person. I think I got this trait from the numerous times I have had to babysit Nick throughout the years. Also I feel that I have a certain outlook on life after growing up with Nick. For instance, Nick is always happy about the smallest things and he’s the one who is mentally disabled. So how I’ve been trying to live my life is to the fullest and I’m always trying to be as positive as possible no matter what life throws at me.”

Hank and Nick at the Sox game this past weekend……

Oh how they have grown up since the days of past when they use to play sweetly on the living room floor.

My Dad always said they looked like innocent cubs wrestling on the ground…..one more…. 😉

.

Those peaceful days long faded as Nick became more frustrated…..giving way to huge meltdowns as he became older.  I applaud Hank putting up with the challenging behaviors of having a brother with not only Down syndrome but also autism.   We did our best to provide support by taking him to sibling workshops along with having him read “The Sibling Slam Book” by Don Meyer.  This is an excellent resource of what it is REALLY like to have a brother or sister with special needs.  We carved out time to just spend with Hank (buddy days) so he wouldn’t feel like Nick, Down syndrome and later autism didn’t consume our family.  I am very proud of Hank and his relationship with his brother.

It has been a crazy, twisted road we have been on but let me just say this….While the sibling relationship takes on a different form with a special needs child, there is no doubt that the bond is there.  I wish that Hank and Nick could have conversations, play video games and throw a baseball like most brothers do.  But that was not meant to be. One thing for certain is that there is a connectedness and love between them.  Last fall Hank took off for NIU. How did I know that Nick missed him?  He walked around with this picture in his hands, never letting it go even as he used the bathroom 🙂

Brotherly love is evident.  That is what is in my noggin this week.  Until next Monday, may your short week be full of love and connections spoken or unspoken.

~Teresa

***Special thanks to my son, Hank my guest blogger extraordinaire 🙂