Category: Autism

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….

. 

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!

photo (109)

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 #27~ Everything in its Place

Posted on by Teresa Unnerstall

Blog #27~ Everything in its Place

Confession…… I admit that I like things orderly in my home.  When the piles of papers start stacking up to avalanche levels it makes me antsy.  I have a few quirks that might make me borderline OCD.  The labels of every can in the pantry are turned perfectly straight and all of the towels have to hang neatly on the rack.   I can’t stand it when someone moves a piece of furniture and creates a new divot in the carpet. Yes, I have a thing about the carpet marks (more on that and the need to feel in control in Blog #1.) Okay maybe the CD collection is in alphabetical order (hey, it’s easier to find them that way.) And don’t even get me started on the autumn leaves that keep trickling into the house every time someone opens the door.

I don’t consider myself a neat freak.  I have no problem letting the folded laundry sit in the basket for several days.  I have to be in the mood to put it away or someone is about to run out of underwear or socks. 🙂  So I suppose my son, Nick comes by some of these traits naturally.  Though often I wonder how much of that is from my gene pool or autism.

Last week the monthly cleaning people were here and inevitably I have to readjust the angles of all the picture frames and knick-knacks to my liking.  Nick follows suit when he gets home from school in his bedroom.

The cleaning people’s arrangement…..

Nick’s arrangement…..

It’s not just when the house gets cleaned.  Recently I bought a new rug for the bathroom. Sometimes Nick’s “aim” is a bit off and I wanted to protect the wood floor.

Nick will have nothing to do with that rug.  There has never been a rug in the before.  Every single time he goes in there he takes it and throws it down in the laundry room.

“Hey mom, this is what I think of the new rug”……

Where I put Nick’s backpack….

Nick says “No way it goes here”……

Sometimes I try to shake things a bit just to get him to loosen up and stop being so rigid.  For instance yesterday, I couldn’t face eating Taco Bell for lunch.  I decided to make a visual to show a change in the schedule.  I really wanted a fresh sandwich and an iced green tea at Panera bread.  Okay maybe I wanted a pumpkin cookie too 🙂

The cookie was not as good as I thought it would be. I took a few bites and threw the rest away.

I prepped him by looking over the visual a few times before we went to the mall.  We came into a different door on the end of the mall where Panera is located.  I pointed saying, “First getting Mom a sandwich, then Taco Bell- yay!”

By the way why is the Board maker icon for the mall always pink?

Nick and I entered Panera Bread.  He was hesitant but tolerant as I placed my order.  We proceeded through of the restaurant.  That’s when he began to dig his heels in. I pointed to the visual task strip and reviewed the plan.  He trudged as I lead him down to the counter full of heaving bowls of hot soup in bread bowls.  Nick was noticeably agitated. His hand took ahold of my left jaw and clung on. I pulled myself into him to release the grasp while acting as if nothing was wrong. “Nick it’s okay, Mom’s sandwich, then Taco Bell.”  He pinched his cheeks really hard and let out a few expletives. I shifted him away from the counter hugging him and praying they could make that sandwich as fast as Jimmy Johns.

It was no use. Nick was beyond reason as he clawed at my cheek gouging into my skin.  I could feel a sting as I pulled him closer to me trying to give him a deep pressure hug. It was a last ditch effort to calm him. Finally the order was ready and I said, “Nick look, Mom’s sandwich….all done, Taco Bell.”  While I made no eye contact, I could feel the patrons glaring at us as we walked out. Outside in the atrium I grabbed my sore jaw that had been sucker punched.  I took my hand away I saw that it was covered in blood.  No wonder they seemed to be staring more than usual.

There it is a snapshot of autism.  Not a pretty picture is it?

In a perfect universe Nick’s world would run the way he sees fit and everything would be in its rightful place. He needs to feel in control and the order and sameness gives him that.  But that’s not how the world works.  I have to prepare him for things to be different.  Yesterday didn’t work out so well.  He perceived the walk into the bowels of Panera to mean that we were staying there. So I will have to go back to the drawing board and rethink how I want to approach it next time…..or just eat Taco Bell 🙂  It’s a complex puzzle and sometimes the pieces just don’t fit.

That’s what is in my noggin. Cheers to a smooth week ahead.  Until next Monday may all of your *knick-knacks stay in a row to your liking!

~Teresa

*Knick-knack According to the Phrase Finder means a dainty little trinket or ornament.  Knick doesn’t mean anything in itself in this term; it is merely a reduplication of knack. We now use knack as meaning ‘a dexterous facility’, but in the 16th century it was used to mean ‘an ingenious contrivance; a toy or trinket’, and that’s the sense that was used in knick-knack.

Shakespeare also used it in The Taming of the Shrew, 1596~ “Why ’tis a cockle or a walnut-shell, a knacke, a toy, a tricke, a baby’s cap: Away

Posted in Autism, Down syndrome, Education and Special Needs

Blog # 24~Top 10 Things I Have Learned While Navigating Nick through School

Posted on by Teresa Unnerstall

Top 10 Things I Have Learned While Navigating Nick through School

This weekend I was prepping for a lecture called “A Parent Perspective” which I do at Aurora University.  For this semester there are two classes one undergrad and a graduate student class all who are/ or planning to become teachers.  Since Nick is a senior in high school I decided to include a top ten list of some things I have figured out over the years. While compiling this list I couldn’t help but think back to those early days. I was a novice and such a chicken when it came to IEP meetings.  I have a degree in teaching secondary education (Kinesiology and Health) but very little experience teaching special education.  I took a class similar to the one I am lecturing while at The University of Texas.  It gave a broad brush of special education and included an internship in a self- contained classroom and gym class. Beyond this I knew very little on how to take the helm and steer these uncharted waters.

Aurora University working with Elliott who leads the classes….

The early intervention program was easy (birth-three years old.)  The staff was nurturing and it was a *can of corn.  Once the cord was cut Nick entered the early childhood/ pre-school program things were more serious and the meetings took on a different tone.

Because Nick had very low muscle tone (a trait of Down syndrome see blog #7 Mama Mia, for more information on DS traits) he was delayed in gross motor activities.  He didn’t walk until age 3 ½ nor eat solid foods.  At age three during the transition from early intervention to early childhood/pre-school I enlisted a private speech therapist who specialized in feeding.  Amazing how one person can impact your life.  Pam opened up my eyes.  She got me thinking outside the box.  She also worked at a private school in Houston and suggested we look at putting Nick there.  The private school called The Arbor School had one opening three days a week.  It was an oasis, this all-inclusive resort with all of the speech, occupational and physical therapy right on campus working together.  They got their hands on Nick and worked magic. Nick attended The Arbor School three days a week and the public preschool program the other two days.  When the IEP came around at the public school, the whole Arbor School team came.   Our entourage sat down and matter of fact like made sure every attention to detail was addressed.  I was stunned.  What you can actually assert for yourself and get all kinds of services, equipment and therapy hours, I had no idea.

Nick at the Arbor School…..

The petting zoo came to the Arbor School during Go Texas Rodeo Week…

In California when Nick was in first grade I found my concerns of his need for a communication system going on deaf ears.  I brought in the Director of the Down Syndrome Connection support group.  The entire staff sat up straight as she advocated for my son.

Nick and I in Livermore, California…..

Much the same in middle school I enlisted the help from Little Friends Center for Autism.  I can’t say enough about the Arbor School, The Down Syndrome Connection and Little Friends.  What a gift they gave me as they showed me how to become an advocate for Nick.

So here is……….….The List!!!!!!

Top 10 Things I Have Learned While Navigating Nick through School

  1. Determine a method to communicate with the staff (communication notebook, email, daily reports.)
  2. Meet with the support teacher to discuss goals for the following year. Request all goals and reports from each department for review before the IEP meeting.
  3. Get everything down in writing in the IEP (from a 1:1 Aid to the chewy sensory toy.)
  4. I am not a bad parent because my child won’t keep gloves on/ or has a meltdown in school.
  5. Sometimes the parent has to be the one to rattle the cage.
  6. Get help when you need it (support groups, workshops, trainings, respite care, etc..)
  7. Know your rights, Read Wrightslaw.
  8. Don’t settle for just any solution if a problem
    doesn’t get better. There is always a better way.
  9. Sometimes as a parent you have to let go of your own dreams for your child so they can move down a different path.
  10. The parent is the biggest advocate for their child with special needs, trust in that.

Bringing support into IEP meeting does give a parent confidence.  But in most IEP’s my hand has been on the helm.  What I know for certain is that communication lines have to stay open.  I also learned to quit beating myself up because Nick had meltdowns (now we know that he was powerless because he couldn’t communicate his needs and it is not my bad parenting.)  Once the autism diagnosis was given, I had to reach out for help get more training and arm myself to fight the big fight.  I quit settling with the school staff and learned that I had to ask for more to help my son thrive. I wasn’t being a bitchy mom; I approached the problems in a matter of fact, but firm manner. And sometimes that means I have to be the one to rattle the cage to obtain services to support my son.  In addition, I found that just because I have a dream for Nick doesn’t mean he can fulfill it.  Facing the fork in the road that separated him from an academic curriculum to a functional curriculum enabled Nick to focus on what he was meant to do. Hello T, he just isn’t ever going to write his name, let go of that academic goal.

So here we are, Nick’s senior year and after riding some rough waves now the seas are relatively calm.  We survived and came out on the other side much wiser and stronger.  That’s what is in my noggin this week.  Until next week, I hope yours will be a *can of corn.

~Teresa

* According to Wiki Answers: The term “Can of Corn” is a phrase used to describe a softly hit baseball as it could easily be caught. The term originated as a customer would ask a grocery clerk for a can of corn the store clerk would grab a can from the top of a stack of cans, and would softly toss the can down to be caught without harm.

 

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 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 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.