Posted in Autism, Behavior/ ABA, Education and Special Needs

Blog #49~April is what?

Blog # 49~April is what? 

April 2nd was “Autism Awareness Day.”  Nick and I didn’t wear blue to show support or acceptance.  Quite frankly, I forgot.  I am down in the trenches trying to keep him from running the faucets full blast, pushing the popcorn button on the microwave and dumping out my cup of coffee all over the floor every single day.  Seems to me they should have kicked it off on April fool’s Day. 🙂

April and autism awareness…..

light it up blue

I applaud these gestures.  In the October archives (Blog #26~Down syndrome Awareness Month), I posted some pictures of iconic places lit up pink in support of breast cancer and shared some ways to support Down syndrome which is also during that month.

Here are a few light it up blue pictures…..

blue eiffel tower

Chicago lights it up blue…..

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The CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD), and a study released just last week suggests that number may be even higher. In the Medical Daily article it stated: “A recent government survey as report of more than 95,000 parents in U.S. exceeds previously recorded accounts.  Now 1 in 50 schoolchildren between the ages of 6 and 17 are diagnosed with autism.  The CDC found that boys are four times likely to have autism than girls which has remained true since it was first discovered.”

An epidemic………

autism through the years

Personally I would like to see the focus on more educational, behavioral supports and other treatment options.  What is going to happen to our kids when they age out of the school system?  There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population.  In addition, I’d like there to be an easier path to obtain funding through the government.

I have spent the last year writing about Nick in this blog so that you can better understand the way he functions having Down syndrome and autism. I have crawled through the gutter like so many other parents.  What I think we all want most is support.  We also need understanding and compassion without judgment.  That along with a night of uninterrupted sleep. 🙂

autism and sleep cartoon

Yes my child is loud, try living with it 24/7…..

autism mute button saying

Yup…….

photo

No, I didn’t change the light bulbs to blue on the porch or add lawn decorations like this person…..

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I didn’t go out and get a *puzzle piece manicure.  It wouldn’t last anyway with all the cleaning up of stuff Nick has dumped out… April archives, Blog #3~ Getting your Goat for the full list.

autism manicure

But I do have a salon appointment to cover the grays Nick has put in my hair this Friday. 🙂  That’s what is in my noggin this week.  I will leave the lighting up campaign for everyone else and Nick with his flashing blue stim toy and blue water bottle… while I try to keep up in his world.

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Seeing the world in blue, cool ……

scan0007

~Teresa

autism ribbon

*The puzzle pieces are used to reflect the mystery and complexity of Autism Spectrum Disorder (ASD.)  It’s a puzzle that has yet to be solved.

Posted in Behavior/ ABA, Speech and Occupational Therapy

Blog #34~ Holiday Stress

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. 🙂

Christmas vacation cig pic

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……

Griswald's Dad pic

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, Behavior/ ABA, Speech and Occupational Therapy

Blog #29~Curious Stims

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, Behavior/ ABA

Blog #27~ Everything in its Place

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….

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, Behavior/ ABA

Blog #23~ ABA: Down Syndrome and Autism

Blog #23~ ABA: Down syndrome and Autism

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

Drum roll please…………………

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

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

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

 5 Tips for Changing a Behavior:

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

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

3. Use behavior management techniques consistently in all environments.

4. Encourage positive behaviors and discourage negative behaviors.

5. Use your ABC’s:

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

B= Behavior… What actually happens during the behavior?

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

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

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

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

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

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

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

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

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

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

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

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

*

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

~Teresa

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

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

Blog #22~ Grooming 101

Blog #22~ Grooming 101

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

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

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

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

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

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

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

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

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

Time for me to get clean and slicked up!

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

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

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

 Voila, it works! 🙂

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

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

~Teresa

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

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #21~ What Is Normal?

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?

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, 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

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.