Tag: Autism

Posted in Fun Side of Nick

Blog #40~Say It’s Your Birthday

Posted on by Teresa Unnerstall

Blog#40~Say it’s your birthday…

“You say it’s your birthday
It’s my birthday too–yeah
They say it’s your birthday
We’re gonna have a good time
I’m glad it’s your birthday
Happy birthday to you.”

Beatles birthday

It’s a silly thing we do…… singing this Beatles tune when calling certain people on their birthdays.  Speaking of which, this week two of the Unnerstall men have theirs.  Al is hitting the big one on Wednesday.  That’s right the big 5-0. 🙂  On the exact day that you turn 50, the AARP card application magically shows up in the mailbox. I proceeded to tear it up and to this day still toss them in the trash. But Al plans to embrace it fully to the extent that will make them go bankrupt.  On the evening of Feburary 6, 1994 I went into labor a week earlier than my due date.  I honestly thought I might have the baby on Al’s birthday.  But like his brother, Nick took his time and so he was born the following day. He was 6 pounds, 14 oz. and was 19 inches long. I gained exactly 19 pounds with this pregnancy.  Nick will be 19 years old on Thursday. 🙂

Here is a look at some of Nick’s birthday celebrations.  What a journey it has been.  Nick’s first birthday was celebrated with my side of the family and with my friend, Sally’s family.  Nick has very low muscle tone and you can see that my mom had to hold him with support over the cake as he blew out the candles.  At this point he was sitting up but far from being able to crawl very far much less pull up to stand.

A single candle on the homemade chocolate cake.  Hank is close by on the right.  Oh, my bangs are hideous…

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It wasn’t until Nick was 3 ½ until he was able to walk on his own. Here he is at the Arbor School in Houston celebrating his fourth birthday.

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We relocated to the East Bay area outside of San Francisco. Many of the celebrations were simple. This is a sad little cake. It’s pathetic as Hank would say. I am ashamed I made that.

Hank holding his brother’s hands so he won’t flap them by his ears…..

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So much for that 🙂

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He is sooooooooo excited! He is going to town stimming those hands by his ears. Looking back I see it; a trait of autism.

This is more like it. A homemade yellow cake with chocolate frosting that Hank and I made.  In case you were wondering I don’t have any formal cake decorating training, shocker right 🙂

Nick turns 6!

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Here’s Al at age 6, sporting a short cut like Nick…..all together, aahhhh he’s so cute…..

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We moved to the Midwest and Nick celebrated his 7th birthday in style with a legit cake and the party theme was Thomas the Tank Engine.

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At school for his 8th birthday, Nick got a special lunch with a Happy Meal. Looks like it is working….what a happy guy!

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The following year the birthday boys celebrated together with Al’s folks Jim and Theresa on Super Bowl Sunday. Best part of the day was the opening kickoff that Devin Hester ran back for a touchdown.
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Unfortunately, Da Bears came up short. But it looks like the birthday boys got some nice presents.  Nick is really growing and rocking that Brian Urlacher jersey!

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Nick’s got to get more lung power for his 17th, whew…..

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Big breath now you have 18 candles to blow out..Big guy’s got this!

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I hope you enjoyed this little taste of the boy’s birthday celebrations.  Common theme seems to be chocolate cake in all shapes and sizes. What a contrast from the low tone baby 19 years ago to present day.  My good friend April G. always says, “Funny thing if you feed and give them drink, they will grow.” Nick has done that in his own way and pace.  Not always in the time frame I had invisioned for him. But he did, and I couldn’t be more proud. That’s what is in my noggin this week.  Happy birthday boys and cheers to many more.🙂  Have a great week everyone and may your cake be full of candles this year and for many more to come!

~Teresa

Posted in Down syndrome, Physical Therapy and Special Needs

Blog #37~ Just Do It!

Posted on by Teresa Unnerstall

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Blog #37~ Just Do It!

This week I want to hop on the fitness bandwagon.  I ‘m not really hopping on it.  2013 marks 30 years of teaching in the fitness industry.  The gym gets busy in January with folks coming in with their resolutions to get in shape.  Are there any trade secrets?  How can someone like Nick who has Down syndrome and autism keep fit?

Buff Nick is too cool by the pool….. 🙂

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First of all there are physical attributes that are associated with Down syndrome which should be considered.  Here is what I pulled off the following website, Livestrong.com is a great resource for more than just its well known cancer support:

http://www.livestrong.com/article/367865-exercise-safety-tips-for-those-with-down-about…”syndrome/#ixzz2Hu6k2Yg3

“Injuries may be caused by many of the symptoms of Down syndrome, including an underdeveloped respiratory and cardiovascular system, poor balance, perceptual difficulties, hypotonicity — muscles that have the ability to stretch far beyond their normal limits — hypermobility of the joints, and ligamentous laxity, which is flexibility of the joints associated with an increased risk of dislocation, says the National Center on Physical Ability and Disability or NCPAD. In approximately 17 percent of people, there may be a severe cervical cord disorder known as atlantoaxial instability that is characterized by laxity between the first and second cervical vertebrae. This makes spinal cord injuries much more likely. If a physician allows exercise, strict monitoring is important to avoid injury to the spinal cord and other areas of the body.” 

Nick had a spinal x-ray which ruled out atlantoaxial instability.  This screening should be done before any exercise program is implemented.  Because of his low muscle tone he received physical therapy and early infant and childhood intervention programs which showed us how to incorporate exercises into his daily routine and play time.

Here are just a few things we put into place at home:

*Sit your child on a small ball and do music time and bubbles to build core strength.

*Create a mountain with a bean bag chair and blankets.  Put a preferred music toy at the top so your child will have to climb up it to reach it.

*Tack musical toys up so your child will have to pull up to stand to play with them.

*Push toys can sometimes be too light, so add some weights to them so it is easier for your child to be stable and push them.

*Bean bags work great to work on vocabulary.  Line up a few flash cards and have your child toss the bean bag to the word you want them to recognize and speak.

*Balls, balls, balls.  Get a mini basketball hoop, Slo Mo balls and nerf balls are easier to catch.  I use to have Hank bounce ping pong balls on the coffee table to entice Nick to pull up to stand.

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Now that he is older I have incorporated more household chores in his routine like vacuuming, taking laundry baskets up and down the stairs, and unloading the dishwasher.

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In school he takes P.E. and enjoys swimming, walking on the treadmill and even yoga.  Of course his favorite is dancing.  He slaps those headphones on and goes hard.  There are many programs through your local park district as well as Special Olympics that can enrich the lives of people who have special needs.

It’s all about consistency in having an active lifestyle, which should begin in childhood.   Increasing activity will help minimize obesity, decrease cardiovascular and type II diabetes risk factors. For aerobic and strength training, make sure adolescents participate in recreational and community activities.

What about the rest of us?  The same holds true about consistency in exercise and dietary intake.  It’s not rocket science.  Calories in and calories out is what it boils down to.  If you consume more than you burn then you are going to gain weight.

 Here’s my top 10 Tips…….

  1. Get medical clearance before starting any exercise and dietary program.
  2. It’s a good idea to enlist the help of a personal trainer who can help you set goals and a timeline. Be sure to ask about the FITT Principle when setting up your program (Frequency, Intensity, Time and Type of exercises.)
  3. Carve out a reasonable time of day that you can commit to and make it a part of your routine like brushing your teeth. (You wouldn’t skip brushing your teeth would you?)
  4. Pick activities that suit your interests and will keep you motivated.  Mix up your workouts so you incorporate all 5 components of fitness (Cardiovascular strength, muscular strength, muscular endurance, body composition and flexibility.)  Total fitness!
  5. Every little bit adds up.  Take the stairs, park further away, do some triceps dips while you wait for the shower to warm up, etc…
  6. Use it or lose it.  Did you know you start to lose training effects after just 48 hours of inactivity?
  7. Don’t obsess with the number on the scale. I always say your jeans don’t lie!
  8. Shop the outer aisles of the grocery store, fresh is best.  If you can’t pronounce the ingredients on a label it might be wise to leave it on the shelf.
  9. Have a support system in place.  Get some workout buddies that will hold you accountable.  There are also some great phone apps to help track and keep you motivated.  Check out the app called “My Fitness Pal.”
  10.  All in moderation, when it comes to eating.  Don’t deprive yourself of your favorite foods now and then.  If you know you are going out for a nice meal plan to eat lighter that day.  Watch those serving sizes too.  I love the visuals like one serving size of protein=a deck of cards, one serving size of pasta=a tennis ball, one ounce of chees=a pair of dice.  Check out sparkpeople.com and foodnetwork.com for more of these tips.

Finally let me borrow a slogan from Nike, “Just do it!” That’s what is in my noggin this week.  Cheers to feeling good and having fun while you’re at it.  Nick and I highly recommend putting on your favorite music and dancing it out!

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~Teresa 🙂

Posted in Behavior/ ABA, Speech and Occupational Therapy

Blog #34~ Holiday Stress

Posted on by Teresa Unnerstall

Blog #34~ Holiday Stress

The holidays should be a time of joy and celebration.  This is not always the case for families of children with special needs, especially autism. The pressures we all experience with the demands of extra shopping, cooking, cleaning, decorating and the barrage of company can be daunting.  The level of anxiety you have may be tenfold for someone who has autism.  We all handle stress in different ways.

“What can I say?  Its Christmas and we’re all miserable”……Oh I love that movie Christmas Vacation. 🙂

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A few weeks ago in Blog #30~ 7 Senses of the World, I wrote about sensory processing disorder.  Taking in the senses in the environment can be both over and underwhelming and Blog #30 showed specific ways to cope.  I heard from many of you on what you found aversive along with ways you handle sensory overload.  Some of you struggle with crowds and people moving into your personal space.  Another was overhead lights. My son Hank and I can’t stand them and use indirect lights as often as we can.  Aversion to color and textures was another that my readers expressed.  So Ali it’s not just you and green slimy food like olives and artichokes. One of my friends has trouble with any foods that are white (sour cream, cottage cheese, milk, etc….)  I learned so much from my readers like how the color orange bothers one along with brown which reminds her of vomit.  Isn’t the sensory processing machine fascinating? 🙂

Regarding ways to cope, many readers mentioned using quiet background noise such as soft music or fountains (my favorite) to help to stay calm.  Visual and auditory ways to cope were sitting by a fireplace or hearing the waves of the ocean. One of my friends finds that someone brushing her hair is an instant calmer.  I know whenever I get to be with my mom, I want her to stroke her fingers through my hair.  Tell me how you manage the stress.  How do you deal with those quirky sensory issues that come at you….Does anyone else avoid cranberries  because it leaches all over the food on the plate? …..That would be Al, Nick’s Dad. 🙂  I want to hear more, message me at tjunnerstall@comcast.net or leave a comment at the end of this blog.

Let’s look at some ways to navigate the holidays with a child who has autism.  It doesn’t mean you can’t partake in activities but you may need to plan better and be prepared to scale back to some degree.  Decorations might be overwhelming for some kids.  Flashing lights or musical decorations can disturb some children (not Nick, he craves it!) 🙂 Decorating might need to be done in gradual stages.  Be sure to allow your child to help out if they can tolerate it. This gives some control when they are losing some from changes in their environment.  Going out shopping and other public places can bombard anyone with a cacophony of sights, sounds, smells and ringing bells. Intense stimuli while shopping  might be too much.  Try to plan a time when the mall and super box stores are not as busy during the week.

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Changes in routines can be hard as well.  Using behavior supports like social stories and  visual schedules can help prepare for complicated days.  Be sure to prep your child by including pictures of family members and friends you will be seeing. Provide them a blueprint to follow. Whether written or in picture icon form, it will give them predictability which keeps the stress level down.  Regarding gifts, you may need to work ahead of time to teach the concept that gifts are not to be opened.  An advent calendar could be a visual cue to countdown until Christmas.  This year I just hid the gifts.  Nick has tried to open them twice already (I am picking my battles)

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Finally, know how much noise and sensory input your child can take.  Watch for signs of tension. Nick will put his hands over his ears or pinch his cheeks really hard.  Allow them a safe place to decompress that is quiet and away from everyone.  This will help to act as a grounding place amongst the turmoil.

Let there be peace, at last….. my sleeping angel, Nick 🙂

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If all else fails then take some advice from Clark Griswold’s Dad……

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Clark:  “Our holidays were such a mess.”

Clark Sr.:  “Oh, yeah”

Clark: “How’d you get through it?”

Clark Sr.: “I had a lot of help from Jack Daniels.”

That’s what is in my noggin this week.  May you find your own way to deal with the holiday stress and have the “hap, hap, happiest Christmas!”  Cheers to all and fingers crossed that the little lights will be twinkling. 🙂

~Teresa

Posted in Autism, Speech and Occupational Therapy

Blog #30~ 7 Senses of the World

Posted on by Teresa Unnerstall

Blog #30~ 7 Senses of the World

This week I want to expand more beyond the one aspect of “stimming” which I wrote about last Monday.  I want to dive in deeper into the sensory processing machine.  Admittedly, this subject has always turned me on.  Over the weekend Nick and I attended the NADS (National Association for Down Syndrome) Retreat that targets a special group that deals with more than just Down syndrome.  The hot topic was Sensory Processing Disorder (SPD) was formally called Sensory Integration Disorder.  Katie Frank, MHS ORT/L who works at UIC Family Clinic in Chicago was our presenter who outlined a summary for us.  Thanks Katie for shedding more light to this topic.  Here is my perspective about this subject.

In a nutshell, SPD happens in the central nervous system.  Imagine the pathway from the brain to the 7 senses as a superhighway.  We actually do have 7 senses which include sight, hearing, smell, taste, touch and two others.  No one talks about the other two senses, but they are so important. They are movement-based senses and are known as Proprioception (feedback from the muscles and the joints) and Vestibular Processing (feedback from movement of the head which tells us whether we are right side up or down in orientation.)

When a person has SPD, the flow is disjointed and the brain is unable to do the job of organizing sensory messages. Imagine a superhighway… You know that wide solid blue line on the map that flows effortlessly at 70mph+.  That is how the messages should transmit from the brain to the body. But what if it looks like the tiny grey line on the crumbled map you are trying to unfold and read.  That crooked road that breaks off and leads you into a desolate farm land area trundling at 15 mph…… THAT is SPD!  A formal diagnosis cannot be given by an occupational therapist but they can do assessments and make recommendations to a doctor.  The diagnosis is given when the problems impact the ability for a person to function in daily life.

Now that I have the scientific stuff laid out, the rest will be some concrete examples of what having SPD can look like and what supports can be put in place to help a person who has these issues.  There are three types of sensory modulation problems:

Over-Responsive (formerly known as Hyper sensitive) a person may avoid touching, sights, sounds, smells and certain tastes as they register them too intensely.  If you have ever seen a child with autism walking in a noisy venue like the mall with headphones on or their hands over their ears they are most likely trying to block out the noise for this reason. Their threshold of handling stimuli is much lower. I picture the character of Cameron Diaz’s brother in the movie “Something about Mary.”  He sported headphones all the time and banged his head when confronted with too much stimuli.  For Nick it’s not sound but rather the sense of touch when it comes to haircuts and toenail trimming (see Blog #22~  Grooming 101 for specific information about this topic.)

Under-responsive (formerly known as Hypo sensitive) is where a person may take longer to feel input, aka a sensory disregarder.  They may be unaware of the feeling of messy face or hands and not recognize touch or the feel of an object being dropped.  This person may be more socially withdrawn and may need coaxing to get engaged into the world.

Sensory Seeking   a person goes out of their way to find more input in their world.  They crave stimulus.  This for the most part IS Nick’s world.  🙂 Often when he walks his feet will hit the ground loudly.  His “heavy walking” as we have termed it is seeking extra feedback.  If there is a puddle he will step hard into it to get the splash to seek input.  He chews on inedible objects in particular his sleeves.) Nick also likes to push buttons on the phone intercom, microwave and often turns up the volume on the TV to 96!  He delights in turning on the water faucets full blast.  So you see he is looking for more input in various ways. Check out Blog # 3~ “Getting your Goat” to get a complete picture and list of things that he has gotten his hands on and dumped out.

So knowing the types of Sensory Modulation is all fine and dandy. But what can be done to address these problems?  That is where the Sensory Diet comes in.  An occupational therapist can assist with putting supports in place to help with this.  In a typical day we all strive to stay at a certain level of function where the keel sails evenly through the water.  Not too hyped up or sluggishly dragging, right?

If a person is under-responsive it is necessary to include “alerting activities” which will give them a boost.  These might include bouncing, jumping, hanging from monkey bars.   In Nick’s day he may need to take a motor break and go jump on the trampoline or get on a swing to rev him back up.  Using a special nubby cushion can help keep a person alert while working at a desk.

“Organizing activities”  can also help a person who is having trouble attending to a task.  For some people it may be deep pressure or heavy work that helps.  Others may need something more oral motor related.  “Calming activities”  help decrease the sensory over-responsiveness and might include deep pressure, joint compressions, massage, gentle rocking, rhythmic movement, taking a bath, muted light, etc.  Bottom line, it depends on the individual. Some senses may/or may not be more sensitive than others.  The parent can do some detective work to see what is needed and how their child reacts then work with an occupational therapist who will tailor a sensory diet to fit their needs.

Here is a list of heavy work activities/proprioceptive activities that may help regulate a child’s arousal level, concentration, ability to sit still and attend to a task or fall asleep.

Gross Motor Activities:
Carrying objects such as groceries, animal backpacks, a fanny pack, stacking or moving chairs/books, and a full watering can/hose, basically ANYTHING with weight to it.

Thanks Kendra Convery, (Nick’s OT from California) for sending this picture of Nick in the balls. Isn’t he cute 🙂 A ball pit can awaken the senses and provide good input on their body position and balance (which addresses proprioception and the vestibular processing.)   

Deep Pressure ideas:
Wearing a weighted vest, weighted hat, or weighted shorts, wearing wrist or ankle weights, using a weighted pad on lap or across the shoulders.  It could also be something like a long door draft or even a toy snake…….


Pushing or pulling objects and activities:
Toy/regular shopping cart, laundry basket, kid’s wagon, raise/lower flag at school, tug of war rope, toy/regular vacuum, wrestling, hippity hop ball.


Sandwich/ Squishing activities:
Make a child “sandwich” between floor pillows, cushions or bean bag chair, roll child up in mat or heavy blanket as a “hot dog” – bear hugs.

Siblings and pets make great deep pressure and wrestling pals…..

Nice stereo system….. and all those cases filled with my fitness cassettes 🙂

Oral Motor Activities:
Resistive sucking using items such as through thin curly straws/krazy straws – sports bottle with long straw, lollipops, blowing bubbles, sour/citrus or salty flavors can alert the mouth.

We all have aversions certain senses. It might be something tactile like tags on clothing that personally drives me nuts.  Tactile issues can be addressed with the Wilbarger Protocol technique (most known as the brushing program.) Many parents of children with autism have reported that their children have responded positively to the Wilbarger Protocol technique.  This is a brushing program that should be administered by an occupational therapist.  Reports have shown a reduction in sensory defensiveness, as well as improved behavior and interaction. Many adults with autism have also reported reduction in sensory defensiveness, decreased anxiety, and increased comfort in the environment through the use of this technique.

We did this program with Nick for many years when he was little….

Certain textures may be unpleasant or down right unbearable.  Personally I can’t stand anything globby and lumpy like tapioca pudding, cottage cheese and flan….. blech!  My sister in law, Ali cringes at anything in the green slimy family like olives, artichokes, avocados, anchovies or hearts of palm. So what is it that you can barely tolerate?  Is it tactile, a certain smell or noises? Do you love loud music or does it overwhelm you? Do you sprint to the roller coaster rides or shy away from them?

The faces say it all…. Hank looks like he is facing the jaws of death up front while Nick is experiencing pure joy!  The rest of us are somewhere in between.  That’s Ali and my niece Anna in the back on the Splash Mountain ride….. 🙂

Is there a type of clothing that you are sensitive too? What calms you….. any certain genre of music, exercise, maybe the sound of a fountain? I would love to hear from you on this.  I plan to write another story closer to the holidays when we are all bombarded by stimulus overload.  I hope this week you gained some insight into how the senses are such a huge part of how we navigate the world.  That’s what is in my noggin this week.  Take a look around your world and let me know what you see that overwelms you or helps to keep you calm. You can e-mail them to me at: tjunnerstall@comcast.net.  Cheers and see you next Monday!

~Teresa

****** News flash********** OOOOPS he did it again.  #27 Fire alarm pull over the weekend in the hotel at the NADS Retreat. 

It was like a land mind in the corridor of that hotel, how could ne not resist…. and speaking of the ultimate sensory seeking…. yup that would be Nick’s….. The rest of us are just trying to keep up! 🙂

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

Blog #29~Curious Stims

Posted on by Teresa Unnerstall

Blog #29~Curious Stims

Stimming is awesome, admit it we all really enjoy it!

Now that I have your attention I thought I would share a little bit about Nick’s world and what turns him on.

So just what is stimming? When you see someone like Nick who might be rocking and bobbing, tapping and making odd noises you probably look over and think “What the…?”  I dedicate this week’s blog to the need to stim! Here is a good explanation from www. About.com/autism spectrum disorders:

What Is Stimming and Why Is It Common In Autistic People? 

Answer: The term “stimming” is short for self-stimulatory behavior, sometimes also called “stereotypic” behavior. In a person with autism, stimming usually refers to specific behaviors such as flapping, rocking, spinning, or repetition of words and phrases.

Stimming is almost always a symptom of autism, but it’s important to note that stimming is also a part of most people’s behavior patterns. If you’ve ever tapped your pencil, bitten your nails, twirled your hair, or paced, you’ve engaged in stimming.

The biggest differences between autistic and typical stimming are the choice of stim and the quantity of stim. While it’s at least moderately acceptable to bite one’s nails, for example, it’s considered unacceptable to wander around flapping one’s hands. There’s really no good reason why flapping should be less acceptable than nail biting (it’s certainly more hygienic!). But in our world, the hand flappers receive negative attention while the nail biters are tolerated.

Like anyone else, people with autism stim to help them to manage anxiety, fear, anger, and other negative emotions. Like many people, people with autism may stim to help themselves handle overwhelming sensory input (too much noise, light, heat, etc.).

Unlike most people, though, individuals with autism may also self-stimulate constantly, and stimming may stand between them and their ability to interact with others, take part in ordinary activities, or even be included in typical classrooms. A child who regularly needs to pace the floor or slap himself in the head is certain to be a distraction for typical students.

It’s not completely clear why stimming almost always goes with autism, though it’s often called a tool for “self regulation.” As such, it may well be an outgrowth of the sensory processing dysfunction that often goes along with autism. At times, stimming can be a useful accommodation, making it possible for the autistic person to manage challenging situations. When it becomes a distraction or causes physical harm to self or others, though, it must be modified.

Lessening or modifying stims can be tricky, but several approaches may be helpful. Applied Behavior Analysis (ABA) may help individuals to eliminate or modify some of their stimming. Occupational therapy is another useful tool.

In some cases, stimming can be reduced with medications that address underlying issues of anxiety. Finally, some people with autism can learn through practice and coaching to either change their stims (squeeze a stress ball rather than flap, for example) or engage in excessive stimming only in the privacy of their own homes.

We try to limit the stim activities to home.  But we respect Nick’s need to manage the excess sensory input that comes into his world.  He will always grab up a few things for a car ride but knows that they need to stay in the car once we reach our destination.

Here are some of Nick’s “tappers” that he raps against his mouth.  The foam pieces are much quieter.

The Bloody hand is joining Nick for dinner 🙂

Here Nick enjoys a small music toy that lights up.  Notice the basket filled with more stim toys and guess who that is on the floor in front of Nick’s feet?

That’s right Yukon Cornelius….. “Sil-ver!”

Nothing beats a good time for Nick than a doorbell…..ding dong, ding dong, ding dong…..ha, ha ha!  🙂

At school he is given down time after his work sessions.  Here are some of Nick’s favorite stims at school. The first one is a small baby toy that is totally not age appropriate. But toys such as these are like that stuffed animal or woobie blanket we hold onto for some reason. Nick likes the music and dances with it.  It also serves for tapping.

Here’s another one he enjoys.  The frog sings “Celebrate” and there’s a party going on right here for Nick…….

This is a new acquisition.  The rat wheels across the table and floor when you pull his tail/string.  Nick loves this and enjoys pulling the string and listening to his ear…….

And of course the good ole stand by that has stood the generations of time……

Who doesn’t love a good Whoopee cushion?  🙂 I buy them anytime I see them at Walgreens and now they make them self-inflating!

Last but not least, his favorite go to stim is a can of tennis balls, tap, tap, tap and he is a happy guy 🙂

The need to stim is part of our nature.  A classic example is my brother.  Tom’s legs would rock back and forth while his hand was on the helm during a sailboat race.  The tighter the race, the faster those legs banged together.  My Mom never forgot the Carefree bubblegum otherwise he would chew the inside of his cheeks raw.  Those were his coping mechanisms to stay calm under pressure. What is your stim of choice, whether it is to keep you calm or to rev you up?

I hope this gives you some insight into the sensory world that is complex and fascinating.  Perhaps when you see a person with autism exhibiting these behaviors it will make more sense to you.  That’s what is in my noggin this week. And remember there is nothing wrong with a stim or woobie blanket to help us cope in a world that can be chaotic!  Just ask Nick………

This is how he tunes out the barrage of political ads……

Linus has it figured out too……

~Teresa

******News flash for those of you keeping score at home.  The fire alarm count is now at 26 pulls! Nick decided to put the “trick” in trick or treat on Halloween.  Yes, it’s Nick’s world, the rest of us are just trying to keep up!

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!

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 Behavior/ ABA, Fun Side of Nick

Blog #25~ About those 25 fire alarm pulls….

Posted on by Teresa Unnerstall

Blog #25~ About those 25 fire alarm pulls……

It seemed fitting for Blog #25 that I expand on the 25 fire alarm pulls that Nick has craftily gotten a hold of since third grade.  I touched upon this a bit in Blog #10~Nano second which chronicled a week of Nick’s charades of wreaking havoc.  Most of the pulls have occurred in the school setting.  While it clearly states in his IEP to both cover and carefully monitor Nick around all fire alarms this still hasn’t stopped him. By the way, just because an alarm is covered doesn’t mean he won’t try and lift it up.  But at least the cover will buy you a few extra seconds. Most of the questions I get have been these…. Why is he so drawn to them?  How can he be so fast? And finally…How does the fire department and staff react once he pulls one?

If you have read any of my other posts it is clear that Nick likes to grab you attention by doing all kinds of things like pushing buttons, dumping out all sorts of things, burping, farting you name it he does it.  The Holy Grail is always going to be the fire alarm.  I mean think about it.  That is a big payoff.  There is a scurry of people exiting the building and the fire trucks come with lights flashing and sirens blaring.  How cool is that? 🙂

The last alarm he pulled was exactly a year ago.  Interesting how he can smell fresh blood and that is when he makes his attack.  Anyone new just starting to work with him will most likely go down.  I spoke to the new school aid that had fallen victim to #25 when I dropped Nick off at the Halloween dance last year. He was still beating himself up felt mortified…….Poor guy.

One of my friends sent this message after the Nano Second blog post #10. “Having been the victim of Nick’s nanosecond skills, I can offer one morsel. He achieves his speed by help of his poker face while plotting (don’t often think of Nick’ mind racing but I believe it does) and sometimes in steps. I saw him try to 2-step me with your hat. First a small move inching the hat 2 feet closer to him on the table, with those innocent eyes.  Then he swooped in ready for the 25 footer Frisbee toss.”

He is fast!  The last time he got me was three years ago at Dominick’s.  (Just so you know he has only got me twice. Al has yet to get caught but he was almost burned by Nick in a very packed Houston-IAH Airport the day after Christmas. The alarms are painted silver, whut?  Nick grazed it but his Dad was able to swipe his hand away.)  So, back to Dominick’s…..

In my defense it wasn’t the usual one I shopped at plus I was wearing one of those bulky  therapy boots on my right foot which had suffered a plantar fasciitis tear.  Minutes before this happened Nick was carefully taking the items out of the grocery cart and placing them on the conveyer belt.  The cashier smiled and gave a compliment on what a good helper he was.  I always have Nick push the cart so he is occupied while in the store.  That’s when it happened.  Suddenly, he stopped, released his hands and made a beeline to one.  I hobbled behind him and made a last ditch leap stretching my arm like a defensive back trying to block a touchdown pass.   “Nooooo Nick!”  But it was too late.  His fingers clutched the switch just as my hand touched his wrist.  What followed were flashes of lights and an earsplitting sound that could break glass.  All of the patrons stopped and cover their ears.  I glanced over at the courtesy booth and saw the store manager throw his hands in the air and shake his head.   All I could do was shrug my shoulders and mouth one word “sorry” as I pointed down at the offender.  Nick was frozen in a trance like state; his eyes as big as saucers.  While he stood motionless; his whole body was trembling.

I knew I had to get him out of there fast as the excitement was fueling him like a crack head junkie.  The rain was falling on that cool autumn afternoon as we made our way to the car.  I got him belted in, put the grocery bags in the back and waited for the fire truck.  You see, even if it is a false alarm the firemen still have to come and investigate.  As Aurora’s finest came blazing in, I limped across the parking lot, drenched from the rain to make my apologies.  I saw two firefighters entered the store no doubt to deal with the scene.  Sheepishly I spoke to the other two who waited in the truck. I explained that Nick had Down syndrome and autism and a passion for pulling alarms. They didn’t say a whole lot but seemed to understand.

Over the years I have asked various fire fighters about someone like Nick who gets a charge out of pulling alarms.  Most of them hardly blink an eye. Last weekend while Nick was helping with a fundraiser for the Peer Buddies program a few of Aurora’s Fire Fighters stopped to give a donation.

As they put money in the tin can I commented, “Hey Nick really likes your fire truck he has been eyeing it since we got here. Oh and he really likes fire alarms too, all 25 of them that he has pulled since third grade.”  One of the guys busted out in laughter and gave Nick a high five!  A few minutes later, they drove their truck right by us with sounding the horn, sirens and lights.  Nick was in heaven! 🙂

I have to give a shout out to these guys and share a few pictures 🙂

Nick helping out with the siren testing at the Duck, NC Fire Department…….

“Wow this is awesome”

Nick collection of tee shirts…..

Thanks to my friend Veleen for sending Nick this one…..

So, here’s to the brave and kind *fire fighters! That’s what is in my noggin this week. Until next Monday why don’t you take a look around at all the alarms in the community?  I bet you’ll see how accessible they are and think….Gosh Nick could get that easily…..and smile. 

~Teresa

* “If Prometheus was worthy of the wrath of heaven for kindling the first fire upon earth, how ought all the gods to honor the men who make it their professional business to put it out?”   ~ John Godfrey Saxe

 

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, 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.