Down Syndrome with a Slice of Autism
Just another WordPress.com site, Here to help you navigate co-occurring Down syndrome and autism. My son, Nick is 30 years old and living his best life as an adult with DS-ASD.
This week, a look back at summer fun over the years. Nick enjoys vacations especially if there is swimming involved. He is now 21 years old and has Down syndrome and autism. Click on this link to view @ https://nickspecialneeds.wordpress.com/2012/06/11/blog-11the-good-ole-summertime/
That’s what is in my noggin this week. Happy summer to everyone and thank you for reading and sharing Nick’s world!
~Teresa
Father’s Day Tribute
This week, a tribute to the men who have shaped Nick’s life along with my own. Nick is 21 years old, he has Down syndrome and autism. Nick and I wish you all a Happy Father’s Day and enjoy @ https://nickspecialneeds.wordpress.com/2012/06/18/blog-12-daddy-o/
Blog #118~ If You Can’t Fix It, Duct It!
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.
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.
In addition, Nick has it tethered securely to his body with two straps (one over the shoulder and the other around his waist).
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
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…..
Thank you for reading and sharing this critical information about wandering and autism. That’s what is in my noggin this week.
~Teresa 🙂
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
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….
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 🙂
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….
Stay tuned for more about Nick’s communication device. That’s what is in my noggin this week. 🙂
~Teresa
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 🙂
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 🙂
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
*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
*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
*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
*Great at sorting
*Does chores at home – dishwasher
*Has an older brother
* 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
*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
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…..
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?
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:
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
Update~ Mr. Sneeze in Your Face
Mr. Sneeze in Your Face passed along his cold to me which is kicking my butt. Nick knows how to sneeze in his arm. I saw him practicing it in front of the bathroom mirror the other day. He just thinks it’s funny to give you a direct hit.
Needless to say, I am under the weather, thanks Nick. Down syndrome and autism has its challenges. This weekend was a struggle, I’ll leave it at that. I was planning on writing about the recent re-evaluation we did on Nick’s speech device. I’ll save that for next time when my head is clear.
This re- blog will be a nice tee up, and provides a background of Nick’s speech and methods we’ve used for his communication over the years @ https://nickspecialneeds.wordpress.com/2013/03/11/blog-45can-we-talk/
Hope you are all surviving this cold season and frigid winter. I’m doing shots of Emergen-C and Echinacea tea hoping to turn the corner soon. After all, I’ve got to keep up with Nick! Thank you for reading and sharing Nick’s world. That’s what is in my foggy noggin this week.
~Teresa
Down Syndrome with a Slice of Autism 