Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #83~Sensory Anchors

Blog #83~Sensory Anchors

Nick doesn’t play with toys like most kids do. Having Down syndrome and autism has changed the playing field for him.  He tends to use many of them to seek out some sensory benefit.  For instance, he likes to mound his toys up in one spot…..

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Even more fun was piling them on our cat……

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The other day he was stacking random objects here and there around the house.

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Why do kids with autism, Down syndrome and other sensory related issues  play with objects in such different ways?

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There are many sensory issues associated with having autism.  Their world may get too bombarded with stimulus or feel unpredictable and overwhelming.  Finding a way to stay grounded becomes even more of a need when the senses are flooded with too much stimuli.  Often a child with sensory issues seeks out comfort in the form of a “sensory anchor” which helps them calm down.  These sensory anchors can be a repetitive activity that provides comfort and is soothing for them

Here are some examples of sensory anchors: 

*Lining up toys

*Spinning objects

*Following a line with their eyes

*Sitting in bean bag chair or swinging

*Looking at reflective objects

*Hand flapping

*Rocking back and forth

*Rubbing hands together

*Chewing on sleeves or collar of shirts and other non-food objects

*Smelling things

*Making repetitive sounds with mouth

How many of you have been out in public and notice a person with autism making odd sounds, rocking, or maybe banging on something loudly. These are ways in which they are  trying to cope in the world by using sensory anchors.  Nick’s include a variety of activities. He often chews on his sleeves and collar of his shirt.  Other times he is rocking, hand flapping, and tapping or making sounds with his mouth (that by the way sounds like a cow mooing)  🙂 

Nick’s first choice and all-time favorite is tapping a can of tennis balls against his mouth!

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Second choice, doing heavy work vacuuming!

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I realize that some of these are not acceptable in public, so I try to find alternatives for such occasions. For instance, I will provide deep pressure in the form of hugging to help calm him down.  But around the house and in the car, I have to respect his need to do this to help him self-regulate.   After all, everyone has some way of doing this whether it’s nail biting, twisting your hair, chewing on a pen, sitting while one leg is fidgeting to stay alert.  We all find our own way to decompress after a hectic day, right?  What’s your sensory anchor?  Music, meditation, exercise, hit the hunting or driving range, X-Box, a bubble bath or glass of wine?

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Bottom line, it’s important to provide opportunities for a child with autism and sensory integration issues to get grounded and centered.  So if it’s a can of tennis balls, then so be it!  That’s what is in my noggin this week.

~Teresa

Posted in Fun Side of Nick, Speech and Occupational Therapy

Blog #82~Hats off to Nick

Blog #82~Hats off to Nick

I’m sitting in the kitchen looking out the window. The sun is gleaming across the snow covered yard but it’s deceiving as the thermometer reads -1 degree.  Nick is home as the school district declared yet another snow day.  So we are hunkered down as this polar arctic blast paralyzes the city and a large portion of the country.

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I’m a Texas girl, when the temps dropped down to 50 degrees I use to whine. The whole state shuts down when hit with snow and ice……..

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However all that has changed since living in Chicago.  My threshold has altered significantly.  The other day I headed out to teach a spin class, it was 29 degrees. I felt like I didn’t need a coat.  One thing I have to say about Nick is that no matter what the thermometer says he is always barefoot around the house.

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Even in the dead of winter he has never liked wearing hats and gloves.  A 6 year old Nick taking on the backyard hill……..

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Many of my friends who have children with a dual diagnosis of Down syndrome and autism can relate.  We can tell you at least one story about our youngsters stripping down buck naked for no apparent reason.  That’s how our kids roll. Boy am I glad those naked days are over with Nick, especially this winter.  As long as I can remember, it has been nearly impossible to keep hats, gloves and shoes on Nick in the winter.  My friend, Susie use to share stories about Nick when the bus pulled up to get her son.  As soon as the door opened, out came a flying shoe. Hardy har har…..  Susie would have to pluck it out of the snow and hand it back to the bus aid.  Well played Nick, well played 🙂

Nick and hats, they just don’t go together.  He barely keeps one on from the walk out the front door to the bus.  He won’t wear his jacket hood either.  His occupational therapist has been working with him to put them on independently along with tolerating it for longer periods of time.  He’s getting a little better with it. When I picked him up the other day, he sat patiently wearing both a hat and gloves.   I asked the OT, how she got him to put them on.  She said, “I told Nick, its cold outside, put these on”.  Funny how they listen to the therapists and become compliant.   So I’ve been leaving a variety of hats sitting out in case he wants to try one on.  Over the past month or so, he is actually giving them a go.

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This morning he put on his Dad’s gloves……

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I wish he would wear hats more.  He looks so cute in them. This one lasted well over 15 minutes.  Bravo Nick!

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But for now, I’ll just be satisfied for him to keep a hat on outside in the subzero elements. Hat’s off to Nick for trying to keep them on longer.  That’s what is in my noggin this week.  Stay warm my friends and let’s hope the groundhog doesn’t see his shadow! 🙂

~Teresa

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Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #69~Down Syndrome, Autism and Speech

Blog #69~Down Syndrome, Autism and Speech

I am often asked about Nick’s ability to produce words given the fact that he has Down syndrome and autism.  He does have a vocabulary including a few expletives that he picked up from us somewhere along the way. I find it interesting how he can say those words pitch perfectly.  This week I have a very special guest blogger.  Brian Sabella is Nick’s speech therapist and shares his perspective on working with Nick at Suburban Pediatric Therapies:  

Speech-Language Therapy and Nick

By Brian Sabella, CCC-SLP

I have been providing clinic-based speech-language therapy for Nick for over four years now. I feel fortunate for the experience for a couple reasons. First and foremost, he absolutely cracks me up—every week. There’s something about his brand of adolescent, slapstick humor that just resonates with me as a fellow male. Additionally, Nick’s family and support system are a pleasure to work with. They hold very high expectations of his communication abilities and understand communication takes other forms besides the spoken word. Nick uses a multifaceted system that includes spoken words, printed pictures, and electronic devices to communicate throughout his day. And as a speech therapist, I love it. For Nick, progress in “speech” means being able to communicate more effectively; it isn’t just about talking!

For those curious about the speech Nick does work on, here is a sample of some words we have practiced and continue to practice: help, Sprite, plate, shower, taco, pasta. With many of these words, Nick is not expected to articulate them exactly as you or I would, but rather, to produce them in a way that a listener would be more likely to understand. The idea is that Nick will probably be handing his conversational partner a picture of a taco anyway, so the spoken word is meant to enhance the communicative exchange. With this specific word, Nick will often produce aco, omitting the t. During our drill practice, I will call attention to my mouth and ask Nick to say it like I do, annunciating that missing t  sound and providing a visual cue (such as pointing near the area of my mouth where the sound is produced). After a correct production is established, Nick is encouraged to say it again a total of five times. Performing a high number of repetitions is always the best way to learn a new movement pattern, whether that movement is a golf swing, a pencil stroke, or a spoken word. Admittedly, speech drill is not one of Nick’s favorite things to do, so his good efforts are always rewarded with a bit of praise or even a small morsel of food.  You know, just to stay on his good side.

Most of my time spent with Nick in therapy hasn’t actually been focused on improving his speech. Some of it has. But I’m actually more concerned with improving Nick’s ability to communicate through other means. The reason for this is because, like many other individuals on the autism spectrum, Nick shows a strong preference for pictures.  He also presents with apraxia of speech, which further complicates matters. This is why at home and at school, Nick’s uses a picture exchange system that helps him communicate during everyday activities.

Teresa carries around with her a set of pictures of Nick’s favorite fast food restaurants.  When they are out running errands and it’s time for lunch, she shows Nick the pictures and he points to the logo of the restaurant he’s in the mood for. If he requests Taco Bell (which he usually does) he can then flip to a page that shows pictures of their menu items and he can indicate which ones he wants to order. Much of our time in speech therapy has been spent working on expanding his comprehension and use of these pictures.

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Then there’s the Bored Board. As readers of this blog, you know that when Nick is bored, he finds ways of wreaking havoc in extremely creative ways. Picking up on these signs of boredom before Nick decides to dump fajita seasoning on the cat or spill an entire bottle of cooking oil on the floor will allow his parents to redirect these behaviors to something less destructive. The Board Bored shows Nick pictures of more appropriate objects and activities to request: DVDs, computer games, an iPod, a whoopee cushion, Flarp noise putty, a (fake) bloody Halloween hand, a sound effects toy that makes burping and glass-breaking sounds, etc.  Nick and I have spent hours working on requesting with the Bored Board so that he can more effectively use it in a time of need.

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Recently, our sessions have been focusing on having Nick formulate requests using “I want.”  We set up a board using an alternative-augmentative communication (AAC) iPad app called Proloquo2Go. It transforms the iPad, iPhone, or iPod Touch into a high-tech voice output device that helps a person communicate by typing or touching pictures. Nick’s screen displays a variety of preferred snacks and some phrases, including “I want.” Our goal was to have Nick indicate which snack he wanted by pressing “I want” then the snack item.  When he does this, the device speaks the sentence “I want popcorn;” I then reward him with some popcorn.  If Nick only touches the snack item without “I want” first, then I prompt him to press both.

Proloquo2Go

As you might imagine, producing these sentences was initially difficult for Nick.  But over time, he became very good at producing them.  This graph tracks his progress and shows that Nick went from almost always needing support to produce these “I want” requests to, after five sessions, almost always producing them independently.

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As you can see, speech therapy is not always about speech.  For Nick, speech therapy is about helping him communicate effectively, even if it means doing so with pictures or electronic devices. With an alternative system of communication in place, Nick’s life is a little easier.  And his pets are a little safer, too.

Brian Sabella and Nick working at Suburban Pediatric Therapies 🙂 ……

Brian and Nick

Special thanks to Brian Sabella, CCC-SLP for sharing his insights this week.  For more about Suburban Pediatric Therapies check out their website at http://www.sptherapies.com.  As you can see there is much more to communication then just speaking words.  That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Augmentative and Alternative Communication (AAC), Speech and Occupational Therapy

Blog #45~Can We Talk?

 

Blog#45~Can We Talk?

How does someone like Nick who has Down syndrome and autism communicate his needs and wants?  Let me start at the beginning.  When Nick was in the infant program he was taught sign language.  He would sign “more, all done, yes, no and other basic words.”  Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.

When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts.  These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.

In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to  About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.

The evaluator came out to the home to try some of the voice output devices with Nick.  He just stimmed on the devices,  hitting the buttons rapid fire like a DJ scratching a rap record.

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The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate.  She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate.  For years, Nick used pictures and sign language to communicate his needs.

Since Nick can’t read or write and his verbal skills are limited, he needs support.  What we learned is that someone like Nick who has autism tends to see things clearly with pictures.  If he can see it, he can understand it.  In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system.  Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂

The cost of buying the software used by most schools is steep as well.  A Mayer-Johnson Boardmaker program can be $400-$800 dollars!  However, if you are a parent you can purchase these programs for 1/2 price. 🙂  Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge.  Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use.  In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.

Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver.  However sometimes he gets a little more creative. 🙂

“Hey Mom,  I’ve laid out my plan for what I want to do now”……..

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Poor Kitty, nap interrupted………..

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The next re-evaluation came in middle school.  The team decided to try Nick on a voice output device.  He was given a set amount time to just play and stim on it.  But then, he began to understand that the device was to be used to communicate.  There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars.  The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication)  devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback.  It was that it was heavy and bulky.

Dynavox V or as we named it “The Brick”……

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After a few years with the Dynavox,  We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat.  Another popular program is called Proloquo2Go.  I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)

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In essence, it is an electronic version of his PECS communication book.  He still needs a lot of practice using it properly without stimming on it.  The jury is still out on whether this will take over as his primary means to communicate.

Touch chat screen….

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Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice.  But mostly he will smile and wave.

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He continues to use some verbal speech,  sign language, Pecs picture book and the iPod Touch Chat.  It’s like walking down the stairs.  Sometimes you need to hold onto the handrail and sometimes you don’t.   All of these communication methods are his handrail that support and facilitate his speech.

I have learned that there is no perfect way to help with speech.  All of these serve him and have their drawbacks.  It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Speech and Occupational Therapy

Blog #38~ Speak Easy

Blog #38~ Speak Easy

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

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

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

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

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

I’ll take one of each….hee hee….. 🙂

little debbie cakes

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

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

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

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

Nutty Professor family

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

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

~Teresa

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

Posted in 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, Speech and Occupational Therapy

Blog #30~ 7 Senses of the World

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

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, 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.