Down syndrome – Page 21 – Down Syndrome with a Slice of Autism

Blog #114~SETT in Motion

Posted on March 9, 2015 by Teresa Unnerstall

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

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

Blog #113~Ready, SETT, Go!

Posted on March 2, 2015April 28, 2019 by Teresa Unnerstall

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

Autism, Down syndrome, Fun Side of Nick

Nick’s 21st Birthday

Posted on February 9, 2015 by Teresa Unnerstall

Nick’s 21st Birthday

Big Guy turned 21 this past Saturday. We threw a party and Nick had a blast. Here are a few snapshots of the day:

Party favors…..Theme red solo cups and Thomas the Tank engine, only in Nick’s world!

I made a toast thanking caregivers, therapists, family and friends for their support with Nick (who has Down syndrome and autism) over the years. Nick followed it up by flashing the crowd. Looks like we have some new members added to the “belly flashing club”. 🙂

Chocolate cake, Nick’s favorite…..

New sensory toys from his occupational therapist…..

Cheers and down the hatch! Don’t worry, he didn’t slam the whole thing. Nick’s brother Hank, handed him the last half of his beer. 🙂

It was a great celebration. We are very appreciative of the generosity from our family and friends. Thank you for all the well wishes and touching sentiments. That’s what is in my noggin this week!

~Teresa

Down syndrome, Recreation/Leisure and Special Needs

Snow Day & Groundhog Day

Posted on February 2, 2015February 2, 2015 by Teresa Unnerstall

Snow Day & Groundhog Day

We had the 5th biggest snowstorm on record for Chicago yesterday. So, today is a snow day at home with Nick. That equals no concentration in the writing department. I’ll be back next week with a freshly pressed blog (unless we have another blizzard). Meanwhile, I’m tackling dust bunnies on the high kitchen cabinets. Nick is tapping away with his tennis balls and pointing outside saying, “Brrrrrrrrrrrrr”!

Speaking of tackling things, here’s a re-blog about getting and staying in shape. The first part is geared for individuals with Down syndrome. I also included my top fitness tips to motivate you too! @https://nickspecialneeds.wordpress.com/2013/01/14/blog-37-just-do-it/

That’s what is in my noggin this week. Stay warm my friends, it looks like 6 more weeks of winter!

~Teresa

Autism, Behavior/ ABA, Down syndrome

Blog #112~Regression of Behaviors

Posted on January 26, 2015January 26, 2015 by Teresa Unnerstall

Blog #112 Regression of Behaviors

Christmas 2014 was anything but merry. The swimsuits, flip flops, suntan lotion and pool toys sat in a pile on the chasse in my bedroom. We never made it to the Florida Keys for our vacation. A member of our extended family came down with pneumonia and then a snowball effect of more health problems that included a 12 day stay in the hospital. Nick wasn’t sure what to make of things. He is 20 years old and has Down syndrome and autism. All he saw was his Dad or me taking off all day on hospital visits which were an hour away. Nick picked up on the fact that something was very wrong. He was sad and angry and missed being with the extended family. We spent that two week break unsure of the outcome and shooting from the hip. In 20 years of raising Nick, I have NEVER seen such a spike in regressive behaviors.

When daily routines are interrupted a child with autism can feel anxious and behaviors regress. Strict routines, normalized school or work schedules without any unexpected occurrences enable a child with autism to progress best. However, because the holidays are busy, stressful and filled with the hustle and bustle of foods, gifts, and family; a parent can expect to see behavioral changes.

Back to Nick and those behaviors that spiked, which included the following:

*Increased stimming with objects and louder vocal stimming

*Pushing microwave fan, phone intercom and now house alarm system much more

*Throwing objects and dumping things like a one man wrecking crew.

*Spitting and rubbing snot on flat screen TV, windows, on our clothing.

*Squirting liquid soap in his eyes, rubbing lotion all over himself

*Multiple, violent meltdowns

*Peeing his pants several times

And to top it off, I left a bottle of Febreeze out by accident………Oh nooooooo!

FYI, Febreeze and a flat screen TV don’t mix well. So, we had to purchase a new one……..

By the way if you Google search “Febreeze on a flat screen TV” there are several entries of other kids doing this. Nice to know we’re not alone. 🙂

I reported all of this in the school/home communication book. The school staff wrote back that Nick was definitely not himself. He was trying to pull fire alarms, pinching his cheeks hard as well as a staff member. To make matters worse, just as Nick was back in his school routine we had two snow days. On top of that, the kids were off two more for the end of semester and MLK Day. Oh, and there was a full moon over the holiday break.

The house is quiet now, and I can focus on writing again. Yesterday, I did a little research on regression of behaviors and holiday breaks. As I reflect on Christmas 2014, a couple of things stand out. First of all, Nick’s behavior was magnified because his parents emotional fatigue and lack of emotional availability. For over two weeks we were back and forth at the hospital. Nick picked up on the stress. Secondly, as a family we should have communicated in private about medical updates. I think back on one particular day. As I briefed Al on the hospital visit, Nick came over crying and wanted a hug. I had to remind myself that he understands much more of what we are talking about. He also picks up on the negative vibes of conversations. Finally, one tip I read in my research was so obvious. But when you are in the thick of things it can be overlooked. That is, don’t let your kids be aimless. It’s essential to find ways for them to occupy your child. When kids are on a school break, they have less structure in their day. Bottom line, they’re going to get into more trouble and conflict because they have the opportunity to do so.

While there was no kayaking, bike rides, beach and pool time or key lime pie over Christmas we did make it through. Things are slowly on the mend. The cousin’s presents and white elephant gifts are tucked away for now. The Hormel Cure 81 Ham sits in the refrigerator awaiting a belated Christmas celebration at a later date. The gift of Christmas 2014 is being reminded of how precious life is and how quickly it can be taken away. In addition, I have a new perspective of how important it is to respect Nick’s needs when there is a school holiday break. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Health Issues and Special Needs Child

Cold Season Survival

Posted on January 12, 2015 by Teresa Unnerstall

Cold Season Survival

Since we are in the trenches of the cold and flu season I wanted to post some survival tips that I use with my son who has special needs. Nick has Down syndrome and autism. So, tackling the cold and flu season very challenging. Here is some great information on this subject that I wrote a few years back:

https://nickspecialneeds.wordpress.com/2013/01/07/blog-36-what-i…-runs-all-over/

Cheers to a healthy start to the new year and surviving the cold and flu season. That’s what is in my noggin this week. 🙂

~Teresa

Autism, Down syndrome

Happy New Year!

Posted on January 5, 2015January 5, 2015 by Teresa Unnerstall

Happy New Year!

Whew, it was a long two week Christmas break. Having a child with Down syndrome and autism presents many challenges over the holidays. So yes, I did the happy dance this morning when the bus pulled up. More on this after I wrap my mind around it.

This week I wanted to share a blog I wrote last year around this time. I hope that it will inspire you @https://nickspecialneeds.wordpress.com/2014/01/20/blog-81dreams-for-the-new-year/ ‎

Thank you for reading and sharing Nick’s world. And by the way, I did keep those bird feeders filled up. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome

Christmas Break

Posted on December 22, 2014 by Teresa Unnerstall

Thank you for reading and sharing Nick’s world this year. Have a Merry Christmas and we wish you a Happy New Year! Enjoy your holiday with family and friends.

I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime. You can also check out the Facebook page for more photos, links and video clips of big guy. We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism.

Cheers,

~Teresa

Autism, Down syndrome

Blog #111~ Constant Child

Posted on December 8, 2014December 19, 2017 by Teresa Unnerstall

Blog #111~ Constant Child

Last Saturday morning, Nick watched the same DVD over and over. It was a continuous loop of Thomas the Tank Engine’s, “A Big Day for Thomas”.

Twenty years later I didn’t see myself listening to the dialog, and able to recite every line. At this rate, there will be no break between Nick watching Thomas and my grandchildren following suit. I can see it now, Hank Jr. saying, Hey Uncle Nick want to watch Thomas the Tank Engine with me?” I also didn’t imagine stumbling over plush toys that my son dropped from the second floor.

I didn’t picture myself scrubbing red marker stains off his clothes at age twenty.

Note to school staff: Markers + Nick = Skin, and Clothes…….

This got me thinking, having Nick is like caring for a constant child. Nick is twenty years old and he has Down syndrome and autism. He can’t stay at home by himself and requires continuous supervision. Don’t get me wrong, he has made strides doing much more independently (like unloading the dishwasher, putting away groceries, recycling, vacuuming, etc.). And he does watch age-appropriate movies and listens to grown-up music on his iPod.

But at the end of the day, I’m still wiping snot off the flat screen TV and microwave. Out in public, he can never be more than arm’s length for fear he may take off running, or to pull a fire alarm.

30 Fire Alarm pulls since 3rd grade. Is there a bumper sticker for that?

I’m not writing this to get sympathy. I’m simply putting a lens on what the world looks like having a young adult with Down syndrome and autism. It’s not the end of the world. But it is a very different world, then I expected. The stimming, banging, tapping, yelling, dumping, phone intercom and microwave button pushing is constant and mind-numbing at times. And you never know what he’s going to drop off the top of the staircase. All I can do is continue working with him to foster independence. I’ll keep redirecting his inappropriate attention seeking behaviors and have him clean up his messes.

I’ll take Stuart Little and Dora the Explorer over shaving cream any day……

I will remind myself that the laughter, silliness, sweet kisses and unconditional love of this constant child helps to offset the rest.

That’s what is in my noggin this week. Now back to operation red marker removal. 🙂

~Teresa

Autism, Down syndrome

Blog #110~Autism Holiday Survival Tips

Posted on December 1, 2014December 21, 2015 by Teresa Unnerstall

Blog #110~Autism Holiday Survival Tips

The Christmas holidays can be a land mine for individuals who have autism. The changes in schedules, crowds, noises and the lights can result in way too much external stimuli to process. My son, Nick is 20 years old and has Down syndrome and autism. As I flip the calendar to December, I can feel my anxiety level begin to arise. We all handle holiday stress in different ways. The movie, Christmas Vacation conveys this so well.

“I don’t know what to say. It’s Christmas and we’re all in misery”

Here are 10 tips for surviving the holidays with your child who has autism:

Start early, get as much done ahead of time with holiday preparations.
Don’t rush, allow enough time to get from point A to point B. Give more notice when it is time to transition. This will help to avoid meltdowns.
Be flexible and relax your expectations over the holidays.
Pare down where you can, whether it’s decorations, presents, or parties. It’s okay to say no or bow out early.
When possible try to stick to routines. Sometimes it’s easier to hire a babysitter or respite worker to stay at home with your child while you go to holiday parties.
Make social stories using visuals or written words (depending on your child’s level of comprehension). This will act as a script for your child to follow. If they can see what’s expected, they will understand the plan and won’t be as anxious.

Task strip for a trip to the mall…..

Task strip for airline travel……

7. Provide pictures of family members and friends that you don’t see that often prior to visiting them. If your child doesn’t like to hug then try a special handshake, high five or Nick’s favorite….

Elbow Bump 🙂

8. Give your child opportunities to help out. Allow them to make choices between two things. This gives them more control during the holidays, (when we all feel a bit out of control at times).

Nick helps out with the luggage, which gives him heavy sensory work….

9. Find a quiet place for your child to unwind. Most of us know how to do this on our own (bubble bath, crack open a bottle of wine, exercise, etc.). But a child with autism can get overstimulated and not know how to decompress. They may need you to help them to settle down and relax.

10. Get rest when you can and take time to pause and reflect on the blessings of the season.

I hope these survival tips will help your family and child with autism. As you flip over the calendar to December today, take a deep breath. Your child will be feeding off your cues, so……

That’s what is in my noggin this week.

~Teresa 🙂

Nick and his brother Hank in 1999

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