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

Blog #155~More Than Just Down Syndrome

Blog #155~More Than Just Down Syndrome

There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to holiday parties, play groups and other fundraising events. My son, Nick lacked speech, displayed unusual and repetitive behaviors (like tapping and shaking objects along with making loud noises).  His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns.  It became apparent that this was more than just Down syndrome, when he hit puberty.

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We approached the school team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff.  It didn’t seem like any of us (both at school and home), could get a handle these problems.  The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”.  Rather than push the matter, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out of pocket.

It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD).  If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician.  The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son. These services were provided in part, by the school district and outside agencies:

*Behavior intervention by the school district, autism specialist resulting in a Functional Behavior Analysis (FBA).  This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.

*Speech support and training using a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

ipad touch chat.JPG

*Toilet Training and workshops for home support.

*Additional State Funding (In-Home Family Support Child Based Waiver) which funds respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)

The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped professionals, family and friends get a better understanding of Nick’s behaviors.  By getting access to these additional supports, we were able to change the strategies needed to help Nick navigate his world.  His communication improved, allowing him to feel appreciated, understood and less frustrated.  As a family, we felt better assisted with the autism training and having respite staff take some of the burden off us.

If you would like more information on dual diagnosis of Down syndrome and autism check out these resources:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals:

down-syndrome-and-autism-intersect

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

In addition, there are many support groups on Facebook when you type in Down syndrome and autism in the search engine, (including my Facebook page- Down Syndrome With A Slice Of Autism)For behavior support, the Facebook page-Autism Discussion Page (Bill Nason).

The challenges of having a child with Down syndrome and autism are unique.  So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated.  You as the parent, know your child best.  If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.

That’s what is in my noggin this week.

~Teresa

Follow Nick:

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Posted in Adult Day Programs for Special Needs, Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #154~Adult Day Program 6 Month Update

Blog #154~Adult Day Program 6 Month Update

On my son’s 22nd birthday this past February, the little yellow bus stopped coming to the door.  My son, Nick has Down syndrome and autism and has aged out of school.  For the past 6 months,  Nick has been going to an adult day program.  This week I want to share some of the activities he’s been doing in this excellent program at the Keeler Center.

Nick’s adult day program is filled with many fulfilling activities each day.  Mondays are dedicated field trip days.

Here are some of the places Nick has visited in the community:

Shedd Aquarium

Library

Brookfield Zoo

Fabyan Park Japanese Garden

Fox Valley Park District Greenhouse

Phillips Park

Red Oak Nature Center

Art Studios

Fermi Lab

Local restaurants (Noodles & Company, Dunkin Doughnuts, Culvers, Colonial Café, etc..)

In the facility, Nick participates in a variety of activities:

Vocational jobs (cleaning and vacuuming sensory room, recycling, shredding, work  bins, gardening, menu planning, cooking, etc..)

nick vacumming aid

Social circle (News to You, greeting and using AAC devices)

Science projects

Table and bin work

Nick work aid

Arts and Crafts (for art fairs, mothers/father’s day, making cards, painting, etc..)

Recreational (gym activities, yoga, etc..)

Nick yoga AID

Fun Fridays (Holiday theme parties, dancing, karaoke, games, concerts, cookouts, movies, etc..)

Speech therapy (insurance private pay), to work on articulation and using his AAC device

Outside the facility, his group does community recycling, shopping for cooking day as well as volunteer jobs.  One of the sites is at a local church, (stuffing bulletins and cleaning the nursery).  The other workplace is at a food pantry, where they organize and stock inventory, like dried beans, cereal and peanut butter.

Nick recycling

Nick has a full life and rewarding activities in his adult day program. The staff is very dedicated, caring, welcoming and patient.  Yes, patient! Nick’s pulled several fire alarms the last few months.  The behaviorist on staff  has put a plan in  place, and met with the staff to curtail this ongoing problem. Hey, it’s Nick’s world, the rest of us are just trying to keep up. The current fire alarm pull count is now 40 pulls since 3rd grade.

While his speech is limited due to having a dual diagnosis of Down syndrome and autism, I can tell that he is very happy in this program.  How do I know?  When I wake him up in the morning he is excited to get dressed and out the door.  The other day I was driving him and his buddy Josh to the site.  Just before we crossed over the Fox River, Nick started saying “Keeler” with a big thumbs up.  It warms my heart knowing that Nick is happy and contributing to society. That’s what is in my noggin this week.

~Teresa

Follow Nick:

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Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #125~Success Stories with the Talker Device

Blog #125~Success Stories with the Talker Device

Nick has been using his new talker for about 5 months now. People with severe speech or language problems often use an AAC (Augmentative and Alternative Communication) to supplement existing speech or replace speech that is not functional. In addition, picture symbols called PECS (Picture Exchange System) and sign language are used to help individuals express themselves.

Nick’s PECS Book…..

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During the spring, the staff at Nick’s school along with his private speech therapists met to look at what type of device would work best for him to communicate. Nick is 21 years old and has Down syndrome and autism. A series of 3 meetings were held to address the student’s abilities, gather data and consider options for appropriate inclusive technology products. This process is called the SETT Framework. SETT is an acronym for Student, Environment, Tasks and Tools. To read more about this process go to the archives and read Blog #113~Ready, SETT, Go and Blog #116~A New Talker for Nick.

Since the SETT meetings, Nick has been using an iPad with and iAdapter case. The program installed is called, Touch Chat. The initial update I gave on this device is in the archives posted on 5/18/15.   We had a few goals in mind. One was to be able to request items like food, movies, music, going out into the community. Secondly we wanted Nick to use the talker to gain attention appropriately. Finally, we hoped that Nick would be able to express his feelings (happy, angry, and frustrated).

Nick has been requesting food items very well along with items of interest to him like tennis balls, sprite, music, people he wants to see, tired etc.. on a consistent basis. In addition, he has been using it to gain attention. When he burps or farts he pushes the “excuse me” or “that’s gross”. If you try and find a certain button on his talker, he will hit “excuse me” as if to say, back off this device is mine. Last week he pushed the button with a keyboard on it. He wanted me to know he had played the keyboard at school that day.

Brian, his private speech therapists spends a lot of time working with Nick and his AAC device. The two go trolling around the speech clinic looking for ladies. Brian added a new button which Nick has been pushing, “You look pretty today, hubba-hubba!” That one has been a big hit 🙂

Nick’s talker, note the bumper pads the team installed.  Nick likes to send it airborne on occasion 🙂

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Last week, there was a major breakthrough with Nick using his talker. One trigger that often leads to a major meltdown for Nick is a crying baby or child. He will begin to pinch himself on his cheeks, followed by pinching anyone near him when this happens. This happened at an airport, leading to a severe meltdown the summer before last. While on a community trip at IHOP on Friday, a child began to cry at a table near them and Nick began to pinch himself. His teacher pointed to the talker instructing Nick to use it. Nick immediately took it and began to push the “stop” button. The first two times he hit the stop button the child stopped screaming. The look on Nick’s face was priceless. It might have been just a coincidence, but in that moment Nick realized using the talker really does work. His teacher cheered and praised him. He was so proud. It was as if he realized that he had power over the situation.

Yay Nick!!!

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It reminds me of many years ago, when the staff got trained to use PECS with Nick. His world of limited speech left him frustrated in those days during puberty. This resulted in many horrific meltdowns.  Using the PECS pictures gave him power; it gave him a voice (much like the talker is starting to do now). The key to the AAC device being successful will be getting everybody on board. Everyone that works with Nick needs to encourage him to use it (and praise him when he does). I look forward to sharing more of his successes with the talker and building on to this. I know he has much more to tell us all. 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 #123~UFC Rousey & Apraxia of Speech

Blog #123~UFC Rousey & Apraxia of Speech

Headline in ABC News last week, Ronda Rousey UFC champion fighter brings awareness to Apraxia of Speech! Take a look at the story featured on Good Morning America:

The lives of champion UFC fighter Ronda Rousey and speech pathologist and mom Laura Smith might seem worlds apart, but the two women share a unique connection.

Smith and her 5-year-old daughter, Ashlynn, met Rousey, 28, this spring at a book signing in Denver, Colorado, for Rousey’s autobiography, “My Fight/Your Fight.”

Smith told ABC News she was on a mission to meet Rousey in order to find out if the speech disorder she had as a child was the same condition that affected her daughter, Ashlynn, has.  

“I read probably everything she’s ever said about her speech impediment and the more I read I was like, ‘That was apraxia. This is apraxia,’” Smith recalled.

Childhood apraxia of speech is a motor speech disorder where the brain has problems coordinating with the body parts –- like lips, jaw and tongue -– needed for speech, according to the American Speech-Language Hearing Association.

“At first I was tested for deafness,” Rousey said of her own childhood struggle. “They thought maybe my pronunciation was off because I was hearing things differently.”  

“But it was really I had all these words perfectly arranged in my head, it’s just when they tried to come out of my mouth they sounded different,” she said. “It was kind of like there was a divide between my brain and my mouth.”  

Because apraxia was not a common diagnosis when Rousey was a child, no one suspected it was what was behind the fighter’s speech problems. That is, until Smith gave Rousey a brochure on apraxia at the book signing.  

“I threw the brochure and the bodyguards came in immediately to get it,” Smith said. “She [Rousey] picked it up and I was like, ‘If you did have it, would you say it in your interviews because it would mean so much for our kids.’”

Rousey says the information in the brochure struck her instantly.  

“I actually ended up reading through the whole thing that night and was like, ‘Oh my God, this is all exactly it. This is exactly what it was,’” Rousey said. “I didn’t know it was actually apraxia until that moment.”  

“She really taught me a lot about myself that day and I can’t thank her enough for it,” Rousey said of Smith.  

To thank Smith and her daughter, Rousey sent a special message, doing exactly what Smith asked her to do at the book signing, talking about apraxia.

“Hi Laura and Ashlynn,” Rousey said in the taped message. “I just wanted to say I’m so happy to hear everything that you’re doing to raise awareness of apraxia.”

“You definitely raised awareness in me and I just wish you all the best,” she said. “I know our paths will cross again someday at some point so I can’t wait to see you again.”

Ronda Rousey ABC news

So just what does apraxia look like?   The American Speech–Language–Hearing Association, describes childhood apraxia of speech (CAS) “is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The messages from the brain to the mouth are disrupted, and the person cannot move his or her lips or tongue to the right place to say sounds correctly, even though the muscles are not weak.”

This hits home for me. My son Nick who is 21 years old and has Down syndrome and autism was given the diagnosis of apraxia when he was 6 years old. While his language skills have improved with speech therapy, he still struggles with articulating words. When he tries to imitate some words he gets stuck.  Nick continues to go to speech therapy, uses sign language, a picture exchange communication system (PECS) and has an AAC device with an app called Touch Chat to further facilitate his communication.

For more information including symptoms, causes, testing and treatment click on the on these links:

http://www.webmd.com/brain/apraxia-symptoms-causes-tests-treatments?page=3

http://www.apraxia-kids.org/

http://www.speakingofapraxia.com/  The first ever parent guide to childhood apraxia of speech, written by Leslie Lindsay

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The meeting of Smith and Rousey at the book signing resulted in raising awareness of apraxia. Rousey posted the brochure on her Facebook page, which has been liked by nearly 7 million as of last week.

ronda-rousey-book

Here’s to Rousey who has won many fights in her life both in and outside the ring.  She has no doubt given inspiration to kids and their parents around the world. I hope this information helps parents and children who are struggling with speech difficulties. That’s what’s in my noggin this week.

~Teresa 🙂

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

Blog #118~If You Can’t Fix It, Duct It!

Blog #118~ If You Can’t Fix It, Duct It!

duct tape

I reported two weeks ago, that Nick’s talker (AAC device) has survived being dropped from the second floor of the Naperville Library and onto the railroad tracks off Montgomery Road.  The case is sturdy but has taken a beating.  Nick is 21 years old and has Down syndrome and autism.  He’s a crafty one.  It’s all we can do to keep up with his antics.  The school team has come up with two things to secure his talker better.

ipad touch chat

First, the team has devised a bumper around the iAdapter case with foam and duct tape to absorb the impact. I’m thinking that we need to patent this prototype.

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In addition, Nick has it tethered securely to his body with two straps (one over the shoulder and the other around his waist).

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Nick is using his talker to make requests for iPad, Sprite, food items. When he burps he pushes the buttons, “excuse me” or “that’s gross”.  The other night I was busy doing laundry and getting dinner ready.  He was getting impatient and growing tired.  He proceeded to push “stop”- “I’m tired”- “I want to eat”.  When he finished dinner, he pushed the buttons “finished” and “bedtime”.  I’ve also noticed that he is using more verbal language since getting talker 2 months ago!

At home I figured out a way to tether it to a shelf with Velcro straps in the kitchen so it’s accessible.  So, between the straps and duct tape, we are staying one step ahead of big guy (at least for now). Hey it’s Nick’s world, the rest of us are just trying to keep up.  That’s what is in my noggin this week!

~Teresa

 

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

Updates on Behavior & AAC Device

Updates on Behavior & AAC Device

Nick’s behavior has been escalating over the last few months.  He is 21 years old and has Down syndrome and autism.  The incidences of throwing objects has increased.  This also includes his new AAC Device (talker). AAC stands for Augmentative Alternative Communication.  The school district’s autism specialist has done some observations of Nick and data collection of behaviors.  I did this as well at home with Nick’s behaviors.

The school team met last Friday to go over the observations and brainstorm on how to adjust his behavior support plan.  A significant amount of the behaviors are attention seeking.  The team is working on a system to reward Nick for being compliant. In addition, they will be utilizing his new AAC device to seek appropriate attention and making more requests and comments with it.  He has been throwing the device both at home and school.  The iPad is in sturdy enough case to survive a throw from the second floor of the Naperville Library as well as being pitched out the bus onto Montgomery Road at a railroad crossing.

On a positive note, he is using the device well to requests food, rewards as well as making some comments like, “excuse me” when he lets out burps.  He is learning how to navigate it with minimal prompts as well.

ipad touch chat

Nick’s behavior support plan is much like painting the Golden Gate Bridge.  Just when you think it’s all done and figured out, a new behavior pops up and you have to start over again.

paint golden gate bridge

That’s Nick’s world….. the rest of us are just trying to keep up.  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 #116~A New Talker for Nick

 

Blog #116~ A New Talker for Nick

Nick has a new talker!  The SETT meeting team looked at Nick’s needs as a student along with his environment, tasks he does and what tools would be needed to help him effectively communicate. Nick is using an iPad with the Touch Chat program.  This Augmentative and Alternative Communication device (AAC), is bigger and the buttons are much easier to push.  It has more keys on the home page making it easier for him to navigate.  Each team member went through a training orientation on the device to learn how to sift through the keyboard and customize it to suit Nick’s particular needs.  Nick is 21 years old and has Down syndrome and autism.

Nick’s new AAC Device….

ipad touch chat

Nick’s speech therapist introduced the device at school.  He was very excited along with his peers during group.  The first thing they did was to take a “selfie” of Nick (and he pressed the button) to add his photo to the personal page.  This page also includes his age, the town he lives in and that he has a cat named Kibbie and assisted in getting Nick to “buy in”.

Kibbie 🙂

Kibbie

At home, Nick navigated through the keyboard very well.  Here are some of the requests and comments he made:

*Nick pushed pulled out juice box and requested juice on talker

*Nick pushed “baseball” and walked to cabinet where they were pointing (wanting his can of tennis balls)

*Nick pushed “tired” before laid down for a nap

*Nick pushed “salami and cheese”, after nap and then pushed “soda”

*Nick pushed “salad” “mashed potatoes” as he unloaded dishwasher

*Nick pushed “phone” after his dad got off the phone to his parents and pushed Grandpa/Grandma

*Nick pushed “bathroom, shave, shower” while waiting for dinner

*Nick pushed “dessert”-Cake after dinner

We are off to a good start with Nick using the AAC device.  The iAdapter case is pretty rugged, Nick’s already thrown it a few times (shocker right).  However the stand that props it up has broken after taking a few hits. When he is in a throwing mood, I tuck the device out of sight so it won’t be damaged further. One thing I noticed right away was how territorial he was with it. He also found his way through the keyboard better than I thought he would.  At one point he pushed the category called “Groups”.  Then, he hit “Jobs” and found the “Firefighter” button which he hit a dozen times.  You can view a video of this on the Facebook page: Down Syndrome with a Slice of Autism.  By the way, why is there a “Pirate” is a button in the “jobs” category?  🙂

Nick fell asleep with it on the couch the first night….

Nick touch chat

Stay tuned for more about Nick’s communication device.  That’s what is in my noggin this week. 🙂

~Teresa

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Education and Special Needs

Blog #115~SETT to Talk

Blog #115~SETT to Talk  

For the past few weeks, I’ve been writing about the SETT meeting process.  Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate. This is called an Augmentative and Alternative Communication device (AAC). Nick is 21 years old and has Down syndrome and autism.

SETT is an acronym for Student, Environment, Task and Tools. The team gathered to ask key questions and get information that will help to pinpoint what technologies would best suit the student.

S= Student (abilities, learning styles, concerns)

E= Environment (What places will the talker be used and how)

T=Tasks (What type of work and learning will the student be doing?)

T=Tools (What tools are needed on the device to make it a success for Nick?)

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In Blog #114, I covered Nick’s abilities, learning style, needs and concerns.  The last three areas we brainstormed on were the Nick’s environment, tasks that we wanted Nick to be able to do on the talker and what tools would be needed to make this a success. Take a look at what the team came up with in these areas: 

Environment: 

* Uses a “change” visual

* PECS book at home – items to request, pictures of people, task strips

* Private SLP services – 1:1 for speech and occupational therapy

* Video modeling strategy successful

* Attends ESY (Extended School Year-summer school)

* Bowling, mall, library, out to lunch

* Church

* Job: delivery run to CEC for STEPS

* Shopping at Meijer and Wal-Mart

* Goes to movies, lunch/breakfast, and the park

*Has a respite worker at home

* Production class: shredding, sorting, bagging, cleaning

*Visits to family – grandparents, aunt and uncle

*Older brother, Hank, attends NIU

*Cooking

* Functional reading and math

* Yoga

* Dance party Fridays

* Uses classroom leisure choice board independently

* Small group or 1:1 instruction, especially for unfamiliar tasks

* Adult supervision for safety

* Visual supports

* Cues to stay on task for jobs he knows

* Needs to know expectations, both visually and auditorally- what to do, how many to   do, how many are left

* Does visual schedule for the day

* Benefits from hand‐over‐hand and modeling for fine motor tasks

* Looks for peer models

* Task strip for hygiene routines, with point  prompts, at home

* Visual learner

* Flexible with symbol sets – familiar with PCS, SymbolStix, Proloquo2Go

* 15 buttons on current AAC home page

* Uses visual support to order at restaurants instead of his AAC device

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Tasks: 

*“That’s gross”

* “I like that”, “I don’t like that”

* “That’s crazy”

* Flirting

* Gain attention

*Need help

* “Stop”

* “I need a break”

* Emotions

* Preferred items and activities

* Requesting

* Sharing his humor

* Order at restaurants

* Communicate what’s bothering him

* Sensory vocabulary – “hot”, “loud”, “crowded”

* “Where is the fire alarm?”

* “I’m tired”

* “I’m mad”

* Ask questions

* Share personal information

*Basic needs – bathroom, drink/thirsty, hungry

* Greetings

* Age‐appropriate vocabulary

* Comments

* Weather and calendar vocabulary

* Names – People past and present

The team looked at what tools would be needed on the device that would work for Nick.  Each member could choose the top three most important aspects to focus on in particular (these have 3 *** by them):

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Tools:

* Portable

* Shoulder or waist strap

* Durable

* Waterproof

* Loud enough for all environments

* Ability to add vocabulary

* Combination of single words and phrases***

* Import photographs

* Easy to program

* Ability to program on the fly

* 7‐8” screen size

* Sturdy case (“bounceproof”)****

* Quick and consistent response from AAC device***

* Category‐based******

* 2‐3 hits to communicate message**

* Online tech support

*Cloud or USB backup

* Warranty

* Cost

*Dedicated communication device

* Ability to hide buttons

* 8‐12 buttons per page

* Keyboard‐sized buttons or larger

*Long battery life

* 1 charger for whole system

* No replacing batteries

The SETT process was enlightening.  The team covered a lot of ground in looking at many aspects of communication for Nick.   As you can see, there are so many things to consider when looking into a voice output device.  Nick just got his new AAC device last Thursday.  I can’t wait to share with you how he is navigating it!  That’s what is in my noggin this week!

~Teresa 🙂

 

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

Blog #114~SETT in Motion

Blog #114~SETT in Motion

Last week, I wrote about the process of a SETT meeting.  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 (AAC) Device. Nick is 21 years old and has Down syndrome and autism.  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

These team members did a brain storming session about Nick, including his abilities, needs and concerns.  Here is a re-cap of the meeting notes and will put a lens on what Nick is like:

Student: Nick U.

*Comedian

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*Likes to get reactions from people

*Wants to communicate

*Uses many modalities to communicate

*Has been talking more

*Holidays were stressful

*Old behaviors have resurfaced, but starting to

decrease again

*Thrives on routine

*Good at following directions

*Good worker

*Knows how to follow sequence of steps at jobs

Nick packaging door knobs_Habitat_4 (2)

*Wants to please

*Teases

*Visual schedule helps decrease his anxiety

*Gets frustrated when told “no”, if he’s not doing

something right, or if his AAC device is not

working

*Gets frustrated if he has difficulty manipulating

items

*Frustrated if he feels he isn’t being heard

*Changes in routine can be difficult

*Needs to understand why things are happening

*Goals at school include: requesting a break,

paying routine, cooking, grooming, commenting,

protesting

*Working on commenting about food and videos

with private SLP

*Loves cooking

IMG_8180

*Fake coughs on people and replicates sneezes to

get a reaction

*Trying to shape his sense of humor into more

appropriate behaviors

*Swipes things off the desk

*Prefers adult interactions

*Has some preferred peers

*Babies crying is a trigger for a meltdown – he

picks up on the emotion

*He’s a flirt – elbow bump

*Strong receptive language

*Likes to dance

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*Great at sorting

*Does chores at home – dishwasher

*Has an older brother

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* Loves community trips

*Taco Bell and movies with the respite worker

*Gets right out of bed on community days

*Very aware of his environments, especially fire

alarms

*Always scanning and scoping out the

environment

*Impulsive

*Likes loud buzzing noises (ex: lift buses,

microwave)

*Seeks sensory input – auditory input, likes to

watch things get poured

*Uses items to tap on his chin

*Loves music – big motivator

*Knows vocabulary on his talker when he’s

motivated

touch chat pic

*Used AAC device to order his meal, Sprite

This should give you a sense of Nick’s attributes.  Exploring a student’s abilities, needs and concerns is the first step in getting things in motion when looking at a communication device.

Next week, I will share the rest of the meeting notes which looks at his environment, tasks we want him to communicate, and what tools will be needed in a device that will be successful for Nick to use.  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.

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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.

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