Category: Down syndrome

Topics related to characteristics and information related to having Down syndrom including health, self-care and leisure activities also included in this subject area.

Posted in Autism, Down syndrome

Blog #119~Autism Survival Kit

Posted on by Teresa Unnerstall

Blog #119~ Autism Survival Kit

Recently I was reading a Facebook post.  It was a poll, asking parents to name their number one necessity item needed for their child with autism.  This got me thinking what would I include in an autism survival kit?  My son Nick, is 21 years old and has Down syndrome and autism. Here is a list of 21 things that you might want to pack in that survival kit.  Note, the last 4 are MY essentials 🙂

survival_kit

  1. Rug shampoo machine
  2. Plumbers snake
  3. Paper towels in bulk
  4. Deadbolt or key pad locks
  5. Child proof locks and rubber bands for cabinets
  6. Noise canceling earphones
  7. Weighted blankets
  8. Swing set
  9. Mini trampoline
  10. Essential oils with a diffuser
  11. Chewy tubes
  12. Figit toys and stim objects
  13. Melatonin
  14. Back up iPads and iPods
  15. Laminator for PEC pictures and schedules
  16. Nail polish remover
  17. Back up clothes for trips and community outings
  18. Coffee
  19. Wine
  20. Earplugs
  21. A good sense of humor

Figit toys…..

figit toys

Transition Timer….

transition timer

Laminated PECS pictures….

IMG01 (13)

This is why I included nail polish remover….

photo (116)

School is going to be out for the summer. ESY (Extended School Year is a short day), so arm yourselves and be ready.  What is YOUR necessity item that you would add to the kit?  I’d love to hear it!  That’s what is in my noggin this week.

~Teresa

Nick sensory toys

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

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

Posted on by Teresa Unnerstall

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).

IMG_5116 

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

Posted on by Teresa Unnerstall

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 Autism, Autism Safety and Wandering, Down syndrome

Wandering and Autism

Posted on by Teresa Unnerstall

Wandering and Autism

Wandering and autism

Spring is here, the flowers are blooming, and everyone wants to get outdoors.  Do you know a child who is an eloper?  My son, Nick who has Down syndrome and autism and he has wandered off.  It’s a parent’s worst nightmare. Here are some action steps you should take to insure their safety @https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/

Deck time, Nick and his stim objects…..

nick and tappers

Thank you for reading and sharing this critical information about wandering and autism.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Down syndrome

Autism and Meltdowns

Posted on by Teresa Unnerstall

meltdown

Autism and Meltdowns

April is Autism Awareness Month.  This week I want to focus on autism and meltdowns.  Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you.  Nick at the time was 19 years old.  He has Down syndrome and autism.  This will give you an idea of the triggers and behaviors that can occur during a meltdown.  It will also show you what I learned to try and prevent this in the future.

Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/

That’s what is in my noggin this week.  Thank you for reading and sharing the reality of autism.

~Teresa

 

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Parent Tips for Better IEP Meetings

Posted on by Teresa Unnerstall

Parent Tips for Better IEP Meetings

It’s that time of year when parents hold their breath in anticipation of IEP meetings.  IEP stands for “Individualized Education Plan”.  An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year.

brace yourself IEP

Many parents dread these meetings. I was one of those parents who did for many years.  But after 21 years I’ve learned a few things on how to make these both productive and cooperative.  My son, Nick has Down syndrome and autism.  Here are some parent tips for better IEP meetings:

https://nickspecialneeds.wordpress.com/2014/03/17/blog-88-parent…r-iep-meetings/

Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa

Posted in Autism, Down syndrome, Education and Special Needs, Government/Legal Matters Related to Special Needs

Blog #117~Autism and Aging Out of the School System

Posted on by Teresa Unnerstall

Blog #117~Autism and Aging Out of the School System

Last night, NBC’s Dateline featured a special called, “On the Brink”.  For three years they followed two families with young adults having autism.  Both were aging out of the school system (and losing specialized help).  Click here for a preview:

http://www.nbcnews.com/dateline/video/preview-on-the-brink-425150531817

According to the nbcnews.com article, “Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they’ve had for most of their lives. And there is no equivalent state or federal support required to take over.”

I understand their situations all too well.  My son, Nick is 21 years old and has both Down syndrome and autism.  He will age out of the school system here in Illinois next year.  I got a lump in my throat and tears streamed, when Dateline showed the school bus pulling up for the last time.  For Nick, that day will happen in less than 9 months on the eve of his 22nd birthday.

best buddies dance

According to the NBC.com news article, “Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.”

autism 1 in 68

One mother said on the Dateline special, “You don’t outgrow autism.  There is a tsunami of children who are aging out and moving to adult life.”  Both of the families encountered struggles to find resources, funding and programs for their sons with autism when they turned 21 years old. Resources are limited for adults aging with autism.

For more on their stories click here:

http://www.nbcnews.com/news/us-news/you-dont-outgrow-autism-what-happens-when-help-ends-21-n340066

The Dateline special has ignited me to pick up the phone and make those calls to the adult day programs we have earmarked with Nick’s IEP team. The STEPS (post-secondary transition) program goal is to insure a seamless transition from the day the yellow bus stops coming to the door to adult life. Nick will continue to need constant supervision and care 24/7 after he finishes at STEPS.

Picture1

My job is to find the right fit, whether it is a workshop or day program that is more community based.  Nick needs structure and meaningful activities in his day.  Otherwise he will regress.  We have a leg up with the funding in place.  Nick is already on the waiver with the Department of Human Resources which pays for respite care.  In addition, Nick receives Supplemental Security Income (SSI).

Stay tuned as we ride the tsunami wave alongside the other warrior parents struggling with autism and the limited funding and services.  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

Posted on by Teresa Unnerstall

 

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

Posted on by Teresa Unnerstall

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?)

photo (120)

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

Picture14

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):

IMG_4318

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 Down syndrome, Government/Legal Matters Related to Special Needs, Uncategorized

World Down Syndrome Day

Posted on by Teresa Unnerstall

WORLD DOWN SYNDROME DAY!!!

This Saturday, March 21st is World Down Syndrome Day!

“World Down Syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder (www.worlddownsyndromeday.org)  

Big Guy Nick 🙂

IMG01

Help me spread the word on social media.  Click on my blog to find out more about WDSD @https://nickspecialneeds.wordpress.com/2014/03/24/blog-89-world-…n-syndrome-day/

Thank you for reading and sharing this information about World Down Syndrome Day.  That’s what is in my noggin this week.

~Teresa 🙂