Tag: Nick’s world

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

DS-ASD Summer Updates

Posted on by tjunnerstall

DS-ASD Summer Updates

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It’s been awhile since my last post. It’s been difficult trying to concentrate and write. My son Nick is 26 years old and has a dual diagnosis of DS-ASD. The Covid-19 pandemic has been one of the most challenging times for us. In particular individuals like my son, fail to understand what is going on, why masks are needed and personally what happened to his adult day program? Nick needs structure and scheduled activities to stay regulated.  The earliest that his program might open up is September. I am not even sure he could go back and wear a mask, much less stay socially distant.  The line is moveable, and for all of us the uncertainty is mind-bending.

Regression of behaviors is real and scary right now. There are hints some of the experiences that occurred in the chapter titled “Waves of Fury” in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. Lack of understanding what is going on=frustration leading to more meltdowns since March. The only difference is that we know how to sense the buildup and cut things off at the pass or re-direct him before the behaviors escalate. I fear for both our family and others in the same boat who have a child with special needs and no school or day programs now or for the foreseeable future. So all I can do is take it day by day…. sometimes hour by hour… and breathe.

Here is a link to an article I wrote about this experience: 

@ https://themighty.com/2020/05/supporting-person-down-syndrome-autism-covid-19/? tm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

Not everything is doom and gloom this summer. My book A New Course is being well received with 49 five star Amazon reviews, order a copy @ https://amzn.to/2W3Un6X My goal is 59+ to commemorate my upcoming birthday. Amazon and Goodreads reviews are critical to help move a book up in rankings and reach more readers. If you have read A New Course, the best gift you could give me for my 59th birthday is a review!

Here is a stellar testimonial I just received from the author of the gold standard book “When Down Syndrome and Autism Intersect:

“Teresa Unnerstall’s book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, captured my heart as she relays her family’s journey which mirrored my own in so many ways. Teresa poignantly shares the challenges and joys that come with parenting a child with DS-ASD. Her book is a true treasure that offers hope, acceptance, and kinship to other like-families and to those who love, support and care for them”.

—Margaret M. Froehlke RN, BSN Author of When Down Syndrome and Autism Intersect, A Guide for Parents Guide for Parents and Professionals

A New Course Book Cover multiple books

Click here to order your copy of my book: @ https://amzn.to/2W3Un6X

We are on summer vacation break and today is my son Hank’s 28th birthday! You can keep up with Nick’s world and our birthday celebrations on social media! I am posting a bunch of fun pictures. Media sites are listed below with direct access and on my website @ https://teresaunnerstall.com/  Keep your eye open for some fun giveaways including copies of my book to celebrate my birthday. Thank you for following and supporting Nick’s world and my new book. Take care, be well find ways to enjoy your summer and the beauty in each day.

That’s what is in my noggin this week 🙂

~Teresa

Follow on Social Media:

Facebook-Instagram-Pinterest @Down Syndrome With A Slice of Autism

Facebook Book Group @A New Course Book Launch

Twitter @tjunnerstall

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD Winter Update

Posted on by tjunnerstall

DS-ASD Winter Update

Vail view 2019

My son Nick is a young adult, who has a dual diagnosis of Down syndrome and autism (DS-ASD). He attends an adult developmental day training program which provides a variety of structured activities. This week, I want to catch everyone up on what Nick’s been doing this winter.

Nick’s day program includes learning and enrichment activities. Clients enjoy learning new skills, vocational jobs, exercise, crafts, shopping, cooking, theme days/parties and community outings. The structured program is a necessity for individuals like Nick who have a secondary diagnosis of autism. He looks forward to going to this program daily.

Nick at his adult developmental day training program:

Nick bowling fall 2019     nick connect game

There have been many celebrations and fun excursions this winter for Nick. Here are a few of the highlights:

Christmas in Chicago was unseasonably warm this year, no jacket or shoes required. 🙂

Nick Christmas presents 2019     Nick Christmas outside 2019

We recently enjoyed a nice vacation in Vail. Nick loved the dog sledding with Mountain Mushers. He got to ride with his guide and friend, Cameron for the third year in a row. This year Nick road up the gondola for the first time and we did snow tubing. It’s always nice to go into Vail village, and this year his respite worker joined us in the fun and helped support Nick for a few days of our trip.

Vail vacation highlights:

Nick and Cameron Dog Sledding 2019   Dog Sledding 2019 Nick and Miss R Vail 2019   Nick and Dad Tubing 2019

Nick just celebrated his 26th birthday! He had a pizza party with cupcakes at his day program. We also had cake at home and a nice birthday lunch with family.

Nick’s birthday highlights:

Nick birthday at Keeler 2020   nick 26 birthday

nick birthday 2   Nick HBD

It’s been a fun and busy winter in Nick’s world. As most of you know, I have completed my memoir, “A New Course: A Mother’s Journey Navigating Down Syndrome and Autism”  which is forthcoming on May 5, 2020!  My next post will showcase the book and include pre-order details and how you can get your hands on a copy. I can’t wait to share this with all of you. I truly appreciate your support in my writing and following Nick’s world. 🙂

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick’s world to view more photos and videos on social media:

Facebook and Pinterest @Down Syndrome With a Slice of Autism

Instagram @https://www.instagram.com/nickdsautism/

Twitter @https://twitter.com/tjunnerstall

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Posted in Adult Day Programs for Special Needs, Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

DS-ASD Fall Update

Posted on by tjunnerstall

DS-ASD Fall Update

fall pumpkins

Here’s what Nick’s been up to this fall.  My son is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  He attends an adult developmental training program each day.  The program keeps him busy with many enrichment activities and developmental learning skills are incorporated throughout the day.  Outside this program, Nick enjoys spending time with his personal support respite workers out in the community.

Some of the highlights of Nick’s day program are community trips, including shopping, museums, bowling and going out to eat.  In house, communication, functional living skills, recreation, music, movies, gardening, crafts and cooking are all a part of the curriculum.

Here are some of the fun things Nick’s been up to this fall outside the day program……

NIU Football Game, with Dad. Go Huskies!

NIU football game

Pumpkin Patch with Miss R….

Nick loves eating out and date nights with his personal support workers, Miss R, Jodi and Kelsey.  The look on his face says it all!  I think he’s got the “smizing” down, Tyra Banks 🙂

Here in Chicago, the fall weather was less than desirable.  But, there were a handful of mild, sunny days in the chilly mix. At least the Chicago Bears are playing some great football this season.

Go Bears!

Nick Bears Jersey

Nick is 24 years old, but I’ve noticed that he continues to gain new skills and behaviors which are both good and challenging.  I am always seeking new ways to support him to make good choices and curtail the undesirable behaviors, like button, fire alarm pushing, throwing and dropping things.  I am happy to report that some of these behaviors have started to diminish since adding in two new social stories.  Social stories are great tools to teach new skills and behaviors.  Next week, I will share more about these two stories, and how they have been implemented both at home and at his day program.  How’s that for a teaser? 🙂

Life has been good this fall, in Nick’s world, and the rest of us are just trying to keep up.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Update~Nick’s World

Posted on by tjunnerstall

Update~Nick’s World

I just got back from a routine doctor’s appointment for Nick.  He completely enjoyed imitating the coughing and throat clearing sounds the gentlemen next to us in the waiting room.  Since the morning has dwindled away, I am opting to give you and update on Nick’s world instead of pulling something out of my noggin to write.  Nick is 21 years old and has Down syndrome and autism.  Here’s a little slice of his world and what he’s been up to (besides imitating others hacking and sneezing)………

Nick attends a post-secondary transition program called STEPS.  His days are full of work jobs,  occupational and speech therapy, cooking, community trips and other school-related activities.  A big thank you to Jodi, who took many of these pictures of Nick’s world.

Nick helps to make ice packs which he delivers to the schools in our district….

Nick delivery

Ding dong, ding dong, ding dong, guess who’s here?

Nick delivery 2

Community trip bowling…..

Nick bowling ramp

Sensory break time at school……

Nick relaxing.jpg

Dinner with his buddies at Ci Ci’s Pizza……

Nick Ci Ci's

Visit to WVHS Wrestling Team venue, he had to try on the headgear 🙂

Nick Wrestling

Nick dancing in Miss R’s (respite worker) boots….

Nick Dancing

Nick the “winter ninja” relaxing at home…..

Nick Winter Ninja

As you can see, Nick has a very full life which he enjoys every day.  I have to thank his respite workers for taking such good care of him and getting him out into the community.  That’s a slice of Nick’s world and what’s in my noggin this week! 🙂

~Teresa

 

Posted in Autism, Down syndrome

Summer Break

Posted on by tjunnerstall

Summer Break

Summer break

I’m taking the next two weeks off for a summer break.  There are plenty of great stories and information about Down syndrome, autism and more in the archives located on the right side as you scroll down. Dig in and enjoy them! Thank you for reading and sharing Nick’s world.  Have a great 4th of July holiday and be safe.

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Summer Fun

Posted on by tjunnerstall

015

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

 

Posted in Autism, Government/Legal Matters Related to Special Needs

Autism Awareness Month

Posted on by tjunnerstall

Autism Awareness Month

autism awareness

This week I am posting a piece written last April about Autism Awareness Month.  Click here to view @https://nickspecialneeds.wordpress.com/2014/04/14/blog-91autism-…in-68-children/

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

~Teresa

 

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Summer Vacation Update

Posted on by tjunnerstall

Summer Vacation Update 

We are back from a two week vacation break.  It’s never certain how a person with a dual diagnosis of Down syndrome and autism will do with changes in schedule and venues.  Here’s what we’ve been up to………

Nick enjoyed going out with his respite worker, Lara to Blackberry Farm.  While on a ride, filled with little kids they hit a big bump.  Nick blurted out a loud expletive.  Let’s just say the little ones might have learned a new word they shouldn’t have.  Uncle Thomas came up from Texas for a visit.  It was fun to share laughs together and grill on the deck.  Nick showed his Uncle how he likes to play musical chairs.  Every time someone would get up, Nick would grab all his tappers and stims and steal their spot. He’d laugh flashing that devilish grin of his.

nick and tappers

The second week, we took a road trip to attend a family reunion.  Our route down took us thru St. Louis……

St. Louis Arch

We arrived at our destination 11 hours later at Lee’s Resort in Grove, Oklahoma….

cabins

Nick did really well in the car.  You just have to tune out the sound of the tennis balls tapping incessantly and watch out for flying toys and objects coming from the back seat.

Nick tapping on my shoulder on the road trip 🙂 “Wake up Mom!”

Nick tapping shoulder

It was so much fun to be with the family.  On Friday, we rented a pontoon boat. His Grandma, cousins, aunt and uncles had blast tubing and he loved riding fast in the boat.  Nick was doing great until we had trouble getting the anchor to stay put. We were ready to relax and float in the lake for a bit.  After several failed attempts in three different areas, Nick began to get upset and agitated.  Poor guy, he didn’t know what was going on.  Finally, we found an abandoned dock and tied up to it.  It took some coaxing to convince Nick to put a life jacket on and get in.  (Normally I would have made some visuals for him to follow.  But we didn’t plan the boat excursion in advance).  For persons like Nick, who have Down syndrome and autism it is important to show visuals so they understand what is going on and also what is expected of them.  Eventually Nick made his way to the stern of the boat.  His legs were trembling as he slowly went down the stairs.  Oh, but once Nick hit the water, he took off doggy paddling so fast as if he was after a fire alarm.🙂

 Grand Lake in Grove, OK…..

lake

After five days of visiting, games, filling up on homemade banana pudding, cobbler and ice cream, we hit the road back to Chicago.  Driving amongst the corn fields I got to thinking about our time with the family.  We are very fortunate to have their support and understanding about Nick.  I looked up into the sky at the clouds trying to zone out ESPN radio.  One cloud looked like a Dalmatian with wings.  Another resembled Dory, the fish from the Disney movie “Finding Nemo”.  Nick was busy tapping a water bottle and cracking himself up laughing.  I have no idea why.   What I wouldn’t give to get inside his noggin and see what he’s thinking.  Since that is not possible I can only go by his demeanor.

Nick hung in there well and did better than I expected at the family reunion.  The only time he got mad,(besides the anchor problems on the boat) was when the tables were rearranged in a different configuration for the final dinner. (He had been sitting in the same spot for every meal.)  Yes, he made loud noises, blew snot rockets and threw things just as he does every day. But that’s just Nick’s world.  I’m not sure what some of the extended family members know or think about Nick.  The ones who choose to engage feel a connection in his hugs, fake sneezes, burps and elbow bumps.  It warms my heart to see that Nick has those family bonds.  We made it without any meltdowns and Nick had a great time and for that, I am thankful.  That’s what is in my noggin this week. 🙂

~Teresa