Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #113~Ready, SETT, Go!

Blog #113~Ready, SETT, Go!

Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate with. This is called an Augmentative and Alternative Communication device (AAC). Nick is 21 years old and has Down syndrome and autism.

Nick with his private speech therapist…..

Brian and Nick

SETT is an acronym for Student, Environment, Task and Tools. The team gathers to ask key questions and get information that will help to pinpoint what technologies would best suit the student. Here are the areas the team looks at in a SETT meeting:

STUDENT

*What are the student’s current abilities?

*What are the student’s special needs?

*What are the functional areas of concern?

*What are the other students doing that this student needs to be able to do?

*What does the student need to be able to do that is difficult or impossible to accomplish independently at this time?

ENVIRONMENTS

*What activities take place in the environment?

*Where will the student participate—classroom, home, community, therapy?

*What is the physical arrangement?

*What activities do other students do that this student cannot currently participate in?

*What assistive technology does the student have access to or currently use?

TASKS

*What specific tasks occur in the environment?

*What activities are the student expected to do?

*What does success look like?

TOOLS

*Are the tools being considered on a continuum from no/low to high-tech?

*Are the tools student centered and task oriented and reflect the student’s current needs?

*Are tools being considered because of their features that are needed rather than brand names?

*What is the cognitive load required by the student to use the tool?

*What are the training requirements for the student, family and staff?

Ready set go

The SETT meeting allows for team members to provide their unique perspectives of Nick.  The members included:

*Support teacher/Case Manager

*Speech and Occupational therapists

*Teaching assistant

*Parent

*Private speech therapist

*School District AT Specialist/Facilitator

The brainstorming session is recorded on butcher paper. At the end of the meeting each team member puts a star on the three most important aspects of the communication device for Nick:

IMG_4318

The AT Specialist gathers up all the butcher paper and compiles the notes to share with the team. These notes enable the AT Specialist to hone in on what devices and speech programs would best suit Nick’s needs. The SETT meeting catches all the ideas of the team and guides them to make informed decisions regarding technologies for the student. Next week, I will share the compiled notes so you get a sense of Nick’s learning style, what motivates and what works best for him. That’s what is in my noggin this week. 🙂

~Teresa

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.

photo (123)

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.

0916091611

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.

Graph

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), Autism, Fun Side of Nick

Blog #59~ The Sleuth Detective

Blog #59~ The Sleuth Detective

The iPod has disappeared, here we go again…..geesh.  One of the many “gifts” that Nick has given me besides razor sharp reflexes is a keen eye as a sleuth detective.

inspector klouseau

Things have a way of vanishing into a *black hole around here.

black hole

Since Nick has Down syndrome and autism and limited verbal skills, I can’t exactly ask him to back track his steps to find his iPod.  I showed him the media bin where it’s should be kept as I signed the word, “help.”

photo (125)

Then, I pointed to the icon in his communication book asking him where is it?  I am met with a blank stare.  So, I take off to check the usual spots.  First stop, behind the couch….nada.  Next, a peer underneath my bed….nil. Now I have to do some back tracking.  When did he have his iPod last?  Over twenty minutes have past as I searched the house.  Then I remembered he was hanging out in Hank’s room.  I do a full room scan for a few minutes then zero in on the bed.  I pulled the comforter back…..bingo!

photo (121)

A few weeks ago I thought I was losing my mind.  I had a stack of letters sitting on the kitchen counter that I was going to mail the next day.  Poof, they were gone.  I sent a text to Al to see if he had mailed them…… nope.  I followed the trail again checking the usual spots….crickets……

“Oh great, now what?  Please don’t be in the trash.”

I dug my way down the garbage, picking through as coffee grounds and gunk stuck to my hands.  No luck.

detective

Finally I had one last thought.  I opened the door to the basement that is in a state of disarray after being flooded  from the spring rains in April………

photo (115)

There’s an hour of my life I will never get back. 

What is the worst thing that has vanished in the black hole?  The entire contents (10 pages) filled with icons out of Nick’s communication book.  I spent a day and a half a day sniffing out every trail I could think of that Nick might have taken.  I couldn’t imagine having to make all those icons, laminate and apply the Velcro again.

Noooooooooooooooooooooooooooo!

photo (116)

I went into the bathroom to see if he might have flushed them down the toilet. Well, it wouldn’t be the first time.  In Blog #21~ What is Normal?  (located in the September 2012 archives), I wrote about the time my leopard reader glasses went missing.  I always keep them next to the laptop in the same place.  The next day Sergio, our plumber was fixing a clogged toilet……

photo (113)

“I found out why your toilet was clogged. You can still wear theeeese glasses they were in clean water, not poopy water.”

Leopard readers back in it’s rightful place…..

photo (124)

The toilet flushed just fine, what a relief…..  The next day, I went to get Nick’s work bins that are stored on a high shelf in the laundry room.  I glanced inside one.  He had emptied his book one by one and put them all in here.  Whew……Thank goodness! 🙂

Communication Book restored, we dodged a bullet on that one…..

photo (123)

The phone went missing a few weeks ago. The phone is easy to find since you can hit the intercom button, but not this time.  Finally I discovered it tucked in the blue bin where I keep my blow dryer. Normally I just reach up and pull the dryer out, but last Thursday and I pulled the whole bin down.  Mystery solved, inside there it sat, the long, lost uncharged phone.

photo (122)

It seems as I write this piece there is a pattern emerging.   Nick definitely likes to drop things, but then other times he likes to put them up in those high bins. Note to self for the next thing that drops into the black hole. There are no lessons
to be learned this week.  It’s just a slice of life in Nick’s world…. The rest of us are just trying to keep up!  That’s what is in my noggin.

~Teresa

*According to Wikipedia:  “A black hole is a region of space-time from which gravity prevents anything, including light, from escaping.[1] The theory of general relativity predicts that a sufficiently compact mass will deform space-time to form a black hole. Around a black hole, there is a mathematically defined surface called an event horizon that marks the point of no return. The hole is called “black” because it absorbs all the light that hits the horizon, reflecting nothing, just like a perfect black body in thermodynamics.”

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.

Cat-DJ-Scratch-Set-1

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”……..

photo (116)

Poor Kitty, nap interrupted………..

photo (117)

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”……

photo (115)

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.)

imaingo case

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….

touch chat pic

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.

photo (118)

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 🙂