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 Autism, Down syndrome, Education and Special Needs

Blog #132~Countdown to the End of School

#132~Countdown to the End of School

countdown-timer

The clock is ticking, and rapidly might I add.  Coming off the holidays, I’ve hit the ground running.  You see in less than a month my son, Nick will be aging out of the school system.  He is 21 years old and has Down syndrome and autism.  The day before his 22nd birthday will be the final day that the little yellow bus stops coming to the door.

yellow-bus

We’ve been preparing for this day for months.  The post-secondary transition program he is attending (STEPS) has done an excellent job to map out a plan for this to be a seamless transition.  Last Friday, Nick visited the new facility (an adult day program).  His speech therapists took pictures and made a social story for Nick.  A person with autism benefits from having a visual schedule.  If they can see it, they can understand it.  This helps with reducing anxiety levels.  Here are a few of pictures from the social story:

Adult Day program site……

Keeler

Nick in the gym….

Nick gym

Nick will have a recycling job, elbows to that!

Nick recycling

Starting this week, Nick will be going to the new facility for half the day on Tuesday and Thursday.  The next couple of weeks he will expand his time there.

The other piece of the puzzle is transportation.  We have to insure that Nick can utilize the Ride DuPage successfully on his own. He will be doing some practice runs with his job coach. Then, if all goes well on his own with someone to meet him at curbside. We have requested a car to pick up rather than a bus.  This is the piece of the puzzle that keeps me up at night.  It’s uncharted territory that is giving me anxiety.  Nick actually does well in the car as he likes to be on the go.  Just make sure the window and door locks are set, he has some tappers to stim on and nothing to throw at the driver. I should pick up some Windex wipes so he can wipe the snot rockets off the window as well.  🙂

As the clock is ticking, I’m busy getting him to doctor and dentist appointments, arranging for a new  talker device and case (his current AAC device has to be given back to STEPS) and working with insurance to hopefully get speech and occupational therapy set up in his  new program.  In addition, the waiver to which Nick receives funding thru the state will need to be switched from the child to the adult waiver (which will increase his funds to support the day program).  The pressure is on, this needs to work, it has to work.  Nick needs to be in a structured program.  And this is an excellent one with a caring and qualified staff.  And I need to keep teaching my fitness classes and have my own life (and sanity).  Wish us luck, that’s what is in my “nervous” noggin this week.

~Teresa

Follow Nick:

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@Down Syndrome With A Slice of Autism

instagram-logo@nickdsautism

 

 

 

 

 

 

 

Posted in Autism, Down syndrome, Education and Special Needs

Blog #101~Teaching Nick 101

Blog #101~ Teaching Nick 101

This week is a perspective written by one of Nick’s middle school teachers, Jessica Martin. She taught Nick during the throes of puberty when his meltdowns were at an all-time high. Nick has Down syndrome and autism and struggles with speech.  He gets frustrated trying to communicate and  understanding the concept of change.

Here’s what his middle school teacher, Jessica Martin had to say about big guy:

It’s hard to believe that the first time I met Nick the year was 2007.  It seems just like yesterday when he walked into my classroom.  When Nick first came to me, he had episodes of self injurious and aggressive behaviors.  He also didn’t like to work much.  I collaborated with his mom who gave me the okay to use pop as a reward for Nick. I started small and used a token board with three squares spelling out the word “pop”.  If he did a work, he got a letter. This process continued until he completed three works with appropriate behaviors and got all three squares which spelled POP!!!!!!!  And omg did he get excited! He would announce in a high pitched excited voice, mocking me, “Nick goooot popppppp!” He would take his little cup that was no bigger than a medicine cup and tip it back, chucking that single gulp as if he had gone days without a drink, slam it down and give us all thumbs up! By the end of the year, he tolerated longer work periods.  We doubled his work time to 6 squares on the token board and changed it from “Pop” to the word “Sprite”.

sprite can

His work refusal behavior was eliminated 🙂 Yipieeee!  There were still small, occasional outbursts here and there but with his mom’s help, we created some amazing social stories to alleviate his stressors. By 2008, Nick was extremely popular in our school. He worked as garbage duty through multiple wings of the school, was happy and was beginning to talk more. His abilities and growth made me so proud.

When Nick finished middle school, I became his respite worker. There are so many hilarious stories too. Oh my gosh, the Taco Bell story comes to mind.   I took Nick to the mall one day. We would go on the weekends to shop around and then get lunch. (Taco bell of course.)

taco bell

I got him to tolerate shopping at the mall for over an hour, (which included lots of shoe stores and Nick trying on display high heels).  As a reward, we headed over to get our tacos and bean burritos.   Proudly, Nick walked with me down the stairs to the food court, looking as if he were on a mission and walked towards the glorious Taco Bell stand.

taco bell dog

We turn the corner and my heart literally froze. The stand was walled up and under construction. Now, 5 years ago, this would have caused a huge scene. Nick stopped, dead in his tracks, looked at the construction sign, fingers curling into little fists and all of the sudden, he yelled as loud as he could, DAMNIT!!!!  He then stomped his foot and we walked away. He handled it so appropriately! Should he have sworn? Probably not, but, I was screaming it in my head so I didn’t correct it! We drove to the nearest taco bell and chowed down on processed beans! Phew!

He’s in the zone…….

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I have seen so much growth in Nick. He surprises me every day. I love him with all of my heart. My big guy! 🙂 ~Jessica Martin

Nick and Jess…..

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I love hearing the perspectives of others who have worked with or been around Nick. It gives me clarity to the fact that he does make progress in his learning and behavior. And he is loved and adored in the process. Special thanks to Jessica Martin for sharing her experiences with Nick.  That’s what is in my noggin this week. 🙂

~Teresa