Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

Nick’s World Update

 Nick’s World Update

Have you settled into 2017 yet, after the busy holiday season?  I’m so happy to be back to share Nick’s world with you!  Nick is 22 years old, and has Down syndrome and autism.  Here are some of the highlights of Big Guy’s holiday fun.

We spent the holidays at home, here in Chicago. Nick enjoyed seeing family.  He’s always happy to see his brother, Hank and share elbow bumps!

nick-and-bro-x-mas

Kibbie had a very “Meowy Christmas” 🙂

kibbie-stockings

Nick was excited to get a new iPad mini.  The new Big Grip case for the iPad mini is called the Big Grip Tweener.  It is much slimmer, more age appropriate in design, and best of all still protects as well as the original Big Grip case.

big-grip-tweener

Nick relishes a nice reflective bag almost as much, as his new iPad mini 🙂

nick-red-bag

Over the holidays, we entertained family and friends.  Nick is use to a certain schedule in the evenings.  It can be tricky to get him to stretch out the time, once the sun goes down. He was very patient and social during happy hour, and a leisurely dinner.  Inevitably, once the meal is over, he wastes no time.  He springs up, grabs his Little Debbie snack cakes and evening meds, then sets them on the kitchen island.  After dessert, he will beeline upstairs, strips off his clothes and is ready for a shower.

beelinne-pic

At the family gathering,  we tried stalling him while the desserts were being passed and the coffee was brewing.  I made the mistake of setting the Swiss Cake Rolls and meds off to the side for just a few more minutes.  Nick would have no part of this, and let it be known.  He took his iPad mini and did a huge karate chop right into the……

nick-pumpkin-pie

Nick was done!  We deflected the incident with an “uh-oh” comment and swiftly got his snack cakes back, to avoid a meltdown.  Sometimes, you have to compromise on your holiday schedule, and respect your child’s need to keep a consistent routine.

After the holidays, Al and I went on his company’s year in trip incentive to Costa Rica.  Nick was in very good hands with his respite care giver, Jodi. There was a good amount of logistics to do when leaving your child with a caregiver.  We put together temporary custody, child care and medical authorization agreements along with a detailed schedule.  In addition,  I prepared a social story so that he could see the change in routine and his schedule.  Here it is in part, below.  Social stories help to give the blueprint for understanding schedules and what each day will bring.  For more on using visual schedules, check out my last post, Blog #164~Why Use a Visual Schedule?

costa-rica-social-story

Nick had so much fun with Jodi going out to eat and hanging out at home. His other respite care giver, Miss R. also took him out over the weekend. We are blessed to have such caring, capable, and patient women to take such great care of Nick.

Want more pictures and videos of Nick?  Check out our social media sites. Follow Nick: Facebook @Down syndrome With a Slice of Autism, Instagram  #nickdsautism, Twitter @ #tjunnerstall

nick-taco-bell-new

All in all, the holidays and extended vacation afterwards went smoothly,  with only a dented pumpkin pie, and a few more attention seeking behaviors.  Most of these included higher incidences of dropping/ throwing things, turning water faucets on, and peeing on the floor next to the toilet.  Those behaviors are to be expected with busy holiday meal and house preparations,  a house full of company, and changes in routine.

Oh, one more thing, Nick managed to pull another fire alarm on  Friday the 13th. That is, the ultimate attention seeking behavior!  Tally count is now at 43 pulls since third grade. Hey, it’s Nick’s world, the rest of us are just trying to keep up.

Here’s to getting back to a regular routine and settling into 2017.  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

photo (40)

*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

020

*Great at sorting

*Does chores at home – dishwasher

*Has an older brother

022

* 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