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

Blog #177~Nick’s Vacation Fun 2017

Blog #177~Nick’s Vacation Fun 2017

Each year we take a vacation to the shores of the Outer Banks in North Carolina.  This summer we added an extra leg to the trip, spending the first week in Virginia.  Nick’s aunt and uncle own property with old tobacco barns they’ve renovated into beautiful living spaces.  This area is located above the banks of the James River.  My son Nick is 23 years old and has Down syndrome and autism.  The quiet country life seemed to agree with him.

Nick Swing VA

Nick enjoyed his time in Virginia, especially the rides on the John Deer “Gator”. 🙂  The renovated tobacco barns were made into living spaces.  They were very accommodating and cozy.

Gator ride

Nick got very relaxed as we did some kayaking on the James River….

Kayaking

Kayaking the James River was very soothing for Nick…..

James River

Gator tour of property with 100+ year old barns

barn va

One of the highlights for me was touring Thomas Jefferson’s estate, Monticello.  Thomas Jefferson has always been my favorite president.  He was a visionary, who had big dreams to expand our country which included exploring science, architecture, paleontology and much more.  Monticello was the center of Jefferson’s world.  When touring his home and plantation high on the mountain top, you can feel the inspiration of his timeless ideas.

Monticello

The second part of the vacation was our annual trip to the Outer Banks, NC (OBX).  We shifted gears from country living to beach life.  When you see these signs, it’s time to relax and turn the knob to Bob, 93.7 FM.  Destination, Duck, NC!

OBX signs

Nick enjoyed his travel companion, Cali who decided to make herself comfortable on his lap on the road trip from Virginia to OBX 🙂

Nick and Cali OBX

Our gracious hosts, Uncle Ron and Aunt Ali also have a beautiful home in OBX.  Nick feels very comfortable staying there for several years.  Cali, their dog seems to be very content as well…..

Ron and Ali OBX

Our backyard view for the week…

OBX crows nest

Nick had a great time, and we even got him on the beach on several occasions.  He’s not a big fan of the texture of sand and heat, due to the sensory issues associated with having autism.  But we pushed his boundaries and he did great sitting under the umbrella with his legs propped up.

Beaching it with his bro…..

Nick and Bro on beach

The house also has a pool that Nick splashed around in each day….

Nick pool obx 2017

Happy hour at the crow’s nest with his “stim” of choice, the tappers!

nick crows nest 2017

Summer 2017 vacation was a great success!  There was not a single fire alarm pull or call button pushed while on the airplane.  Nick stayed on an even keel with his behavior.  The only outburst occurred on my birthday at the Aqua Restaurant, located on the sound side of the island.  Towards the end of our meal, Nick was done and stood up.  His Dad tried to get him to sit back down, but he wanted no part of it.  As Al motioned him back to the chair, Nick yelled “God Dam#*it”, which echoed out, silencing the entire dining area. There was a notable pause with all eyes glaring at our table.  Autism spoke loudly in that moment.  Fortunately, things did not escalate, and we allowed him to remain standing as we finished dessert and settled up the tab.

It was a fun and relaxing two weeks in Virginia and the Outer Banks.  The success of such a trip comes with using picture icons to help him navigate his days and anticipating possible triggers of Nick’s behavior.  We watch his body language for things that might spark a meltdown, and cut it off at the pass or redirect quickly, before things escalate.  Yes, we pushed the boundaries by trying new things like kayaking, riding on the gator on a property tour, and longer & more frequent trips to the beach.  But each was met with praise and rewards (Sprite, iPad, salami) along with elbow bumps.  And don’t forget the tappers, or stim of choice that your child needs to regulate thier sensory needs,

Keep pushing the boundaries with your child, and don’t limit what you think they can handle on a vacation.  It’s worth a try for your child and the whole family.

OBX View

As I post this final picture, I treasure the new memories made on this vacation.  And as Ali told us before departing, “Try to stay in beach mode as long as you can”.  That’s what is in my noggin this week. 🙂

~Teresa

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Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #176~ Special Needs Summer Recreation Programs

Blog #176~Special Needs Summer Recreation Programs

The heat is on!  Are you looking into programs for your child with special needs this summer?  There are many types of programs available including camps, athletic and leisure programs.  A great place to start is to contact your local park district to see if they offer any special recreation programs.  For programs in here in Illinois click on this link: http:// www.specialrecreation.org

Here are some links for special needs summer programs:

Special Olympics- http:// www.specialolympics.org

Buddy Up Tennis- http:// www.buddyuptennis.com

Top Soccer- http://www.topsoccer.us

I Can Ride Bike Camps- https://www.icanshine.org

Easter Seals- http://www.easterseals.com

Gi Gi’s Playhouse- https://www.gigisplayhouse.org

American Camp Association- https://acacamps.org

Very Well has a list of Inclusive Sports Programs- https://www.verywell.com/special-needs-sports-programs-3106922

Friendship Circle List of Camps- http://www.friendshipcircle.org/blog/2013/02/13/25-summer-camps-for-individuals-with-special-needs/

Diveheart Scuba program- http://diveheart.org

Diveheart 2013 336

My son Nick (pictured above), is 23 years old and has Down syndrome and autism.  He has participated in many of these programs over the years.  These include Special Olympics, Challenger Baseball League, Top Soccer, swim lessons, Diveheart and I Can Shine Bike Camp.  During the summer months he also attended ESY (Extended Summer Year) summer school.  These programs helped him to learn new skills, have a structured routine, and develop friendships.

Nick at ESY Summer School…..

 

I Can Shine Bike Camp….

photo (124)

Many of these programs are available for children with special needs throughout the U.S.  My son Nick had great experiences in participating in these programs.  If you know of a program you would like to share, please contact me.  I’m always updating my resource list on this website and sharing them with other support groups.  Here’s to a great summer 🙂

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs, Resources for Special Needs

Winter 2017 Update

Winter 2017 Update

I hesitate to call this a “winter” update, as we’ve been enjoying a string of mild, 65 degree days here in the Chicago area.

Hot tub in February, no jacket required…..

nick-hot-tub-feb

My son Nick, just celebrated his 23rd birthday a few weeks ago.  He has Down syndrome and autism.  He has been going to an adult day program, for the past year.  The program offers a variety of enriching activities, which he completely enjoys.  In addition, Nick does many community outings with his awesome respite caregivers, Jodi and Lara.  They go out to eat at a variety of restaurants, to the movies, library, and parks.  Nick loves being out and about, in the community.

We have been very active in our local Down syndrome support group, The National Association for Down Syndrome (NADS).  Even before we relocated to the Chicago area, NADS was instrumental in providing information and support for us.  They have been a vital resource for our family, and many others in the Chicagoland area.  To find our more information about The National Association for Down Syndrome (NADS), click here: http://www.nads.org.

nads-logo

The NADS Bowl-A-Thon event, is coming up on March 5th.  This event, is the single largest fundraiser for NADS.  This year, Nick has a fundraising page for his bowling team. You can click on the link to support Nick’s Elbow Bumpers Team and NADS:

http://www.firstgiving.com/fundraiser/nick-unnerstall/nads-32nd-annual-bowl-a-thon 

Big Guy’s signature elbow bump with his brother, Hank…..

nick-and-bro-x-mas

One more update, I want to briefly mention is coming up on March 21st, which is World Down Syndrome Day. 

world-down-syndrome-day

“World Down Syndrome Day is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

One of the trademarks of World Down Syndrome Day, is rocking your socks!  This year I am working on partnership to raise money and awareness for Down syndrome, where you can purchase some funky socks.  I’ll be posting more information about this next week, on this site and the social media sites listed below. Stay tuned……

funky-socks

The Down syndrome community has supported Nick and our family, so much over the past 23 years.  These fundraising efforts are the least that we can do to give back, and help other families going down the same path. Having a community of support has helped us to navigate Nick’s world. Now at age 23, Nick is a very happy, young man who enjoys life.  That certainly brings a smile to my face. 🙂

nick-smiling

That’s what is in my noggin this week! 🙂

~Teresa

Follow Nick:

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#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

Posted in Adult Day Programs for Special Needs, Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #154~Adult Day Program 6 Month Update

Blog #154~Adult Day Program 6 Month Update

On my son’s 22nd birthday this past February, the little yellow bus stopped coming to the door.  My son, Nick has Down syndrome and autism and has aged out of school.  For the past 6 months,  Nick has been going to an adult day program.  This week I want to share some of the activities he’s been doing in this excellent program at the Keeler Center.

Nick’s adult day program is filled with many fulfilling activities each day.  Mondays are dedicated field trip days.

Here are some of the places Nick has visited in the community:

Shedd Aquarium

Library

Brookfield Zoo

Fabyan Park Japanese Garden

Fox Valley Park District Greenhouse

Phillips Park

Red Oak Nature Center

Art Studios

Fermi Lab

Local restaurants (Noodles & Company, Dunkin Doughnuts, Culvers, Colonial Café, etc..)

In the facility, Nick participates in a variety of activities:

Vocational jobs (cleaning and vacuuming sensory room, recycling, shredding, work  bins, gardening, menu planning, cooking, etc..)

nick vacumming aid

Social circle (News to You, greeting and using AAC devices)

Science projects

Table and bin work

Nick work aid

Arts and Crafts (for art fairs, mothers/father’s day, making cards, painting, etc..)

Recreational (gym activities, yoga, etc..)

Nick yoga AID

Fun Fridays (Holiday theme parties, dancing, karaoke, games, concerts, cookouts, movies, etc..)

Speech therapy (insurance private pay), to work on articulation and using his AAC device

Outside the facility, his group does community recycling, shopping for cooking day as well as volunteer jobs.  One of the sites is at a local church, (stuffing bulletins and cleaning the nursery).  The other workplace is at a food pantry, where they organize and stock inventory, like dried beans, cereal and peanut butter.

Nick recycling

Nick has a full life and rewarding activities in his adult day program. The staff is very dedicated, caring, welcoming and patient.  Yes, patient! Nick’s pulled several fire alarms the last few months.  The behaviorist on staff  has put a plan in  place, and met with the staff to curtail this ongoing problem. Hey, it’s Nick’s world, the rest of us are just trying to keep up. The current fire alarm pull count is now 40 pulls since 3rd grade.

While his speech is limited due to having a dual diagnosis of Down syndrome and autism, I can tell that he is very happy in this program.  How do I know?  When I wake him up in the morning he is excited to get dressed and out the door.  The other day I was driving him and his buddy Josh to the site.  Just before we crossed over the Fox River, Nick started saying “Keeler” with a big thumbs up.  It warms my heart knowing that Nick is happy and contributing to society. That’s what is in my noggin this week.

~Teresa

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nick fire truck shirt

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Posted in Autism, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #131~Christmas Ideas for a Special Needs Child

Blog #131~ Christmas Ideas for a Special Needs Child

There’s only 11 more shopping days until Christmas. Are you struggling to find a gift for a child with special needs?  My son Nick has Down syndrome and autism.  For 21 years I’ve worried if I was doing enough and finding the right toys to help him thrive while having fun.  You name it we’ve done it from the mini trampoline to Tickle Me Elmo (and every light up, musical toy in between).  🙂

Nick toys

Children with special needs often have sensory issues. They struggle to process sensory information.  Some children are sensitive to touch, while others are sensitive to sounds or lights.  Toys and activities geared to be more visual, tactile, and interactive can help with these sensory issues.  Gifts that appeal to the senses like plushies, figit toys, putty, stress balls and flashlights are popular.

figit toys

Books that have predictable patterns, repetition and rhymes are enjoyable such as the classics like “Good Night Moon,” “If You Give a Mouse a Cookie,” and Dr. Seuss books. Interactive books can help with language skills.

talk

Puzzles can help with fine motor and cognitive skills.  Many have sound bites to provide additional feedback.

soundpuzzle

More gift ideas………

*Music table

music table

*Art easel

*Vibrating pillow

*Air hockey

*Musical animals

music animals

*Musical trampoline

trampoline

*Solar System in My Room

solar system

*Tranquil turtle

tranquil turtle

*Putty (www.puttyworld.com) It glows and changes colors!

puttyworld

You can find these gifts on the Amazon and Toy R Us websites. There are many more ideas at www.nationalautismresources.com.  Also, I have a resource page listed on this Wordpress site.

Holiday Ideas from Suburban Pediatric Therapies (where Nick goes to speech and occupational therapy):holiday gifts spt

 

Cheers to a fun filled holiday season for your child with special needs. I hope these gift ideas will help make the season a little brighter. Thank you to all the parents and therapists who helped to contribute to the gift list.   That’s what is in my noggin this week.

~Teresa 🙂

 

 

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

Update~Nick’s World

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 with 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, Recreation/Leisure and Special Needs

Blog #124~Sports and Your Special Needs Child

Blog #124~Sports and Your Special Needs Child

Having a child with special needs and finding sports and leisure activities that suit their level isn’t always easy. My son Nick is 21 years old and has Down syndrome and autism. Nick has participated in Special Olympics, Top Soccer, and Challenger League Baseball programs.  Today I want to highlight the baseball program (The Challenger Division).

Special Olympics (http//www.specialolympics.org)

Nick stands on the top of the podium winning  the Illinois State Gold Medal in the softball throw….

Nick Special Olympics

Top Soccer (http//www.usyouthsoccer.org/programs/topsoccer)

Nick Top Soccer

Baseball-The Challenger Division http://www.littleleague.org/learn/about/divisions/challenger.htm

“The Challenger Division was established in 1989 as a separate division of Little League to enable boys and girls with physical and mental challenges, ages 4-18, or up to age 22 if still enrolled in high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.  Today, more than 30,000 children participate in more than 900 Challenger Divisions worldwide.

Teams are set up according to abilities, rather than age, and can include as many as 15-20 players. Challenger games can be played as tee ball games, coach pitch, player pitch, or a combination of the three.

One of the benefits of having a Challenger Division is that it encourages the use of “buddies” for the Challenger players. The buddies assist the Challenger players on the field, but whenever possible, encourage the players to bat and make plays themselves. However, the buddy is always nearby to help when needed.”

Nick challenger league

Nick would hit off the tee and a volunteer buddy would help him around the bases. It was a great experience. Check out our Facebook page called “Down Syndrome With A Slice Of Autism” to view a wonderful video about The Challenge League. Or go to this link to see more @http://videos.littleleague.org/video/2015/09/09/What+the+Challenger+Game+means+to+Little-wzODBndzpy

I highly recommend looking into sports programs for your child with special needs. The Challenger League was a wonderful program to be involved in. Play ball, that’s what’s in my noggin.

~Teresa 🙂

 

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

Summer Fun

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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 Down syndrome, Recreation/Leisure and Special Needs

Snow Day & Groundhog Day

IMG_4302

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

groundhog

 

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

Blog #107~Dolphins and My Son with Special Needs

 

Blog #107~Dolphins and My Son with Special Needs

There is something about dolphins and Nick. The first time I noticed his fascination was on a field trip to the Shedd Aquarium when he was 6 years old. As the dolphins sprung out of the water he got so excited! The look on his face was sheer delight. I’d never seen him so joyful and mesmerized all at once.

Dolphin show

A few years later, at SeaWorld in San Antonio, my sister witness Nick’s joy.  Laura literally cried seeing Nick’s face light up.  He is so drawn to the dolphins and beluga whales.  Nick has Down syndrome and autism.  His speech is limited.  But no words were needed.  The look on his face said it all.  I knew that I had to find a way for him to get up close with dolphins as they seemed to be able to connect to Nick.

A few years ago we took a vacation down in the Florida Keys.  This was a perfect opportunity to find a program where Nick could get in the water with the dolphins.  There are many dolphin encounters in that area but I decided on a more personal experience at Hawk’s Cay Resort“The Dolphin Connection” provided this with small groups of 4 or 5 participants. I spoke with the head trainer to discuss our son and his special needs. She assured me they were very experienced with handling such. I created a social story filled with icons to support Nick in understanding the schedule of events. It was a beautiful day with the warm sun cascading over the aqua waters of the Keys.

Hawks-Cay-004-340x213

The first part consisted of a brief classroom instruction to go over rules and education on dolphins. Nick along with his Dad, brother and cousins were so excited to squeeze into wet suits and get down to the docks.  The experience was very hands-on where each participant individually got to touch, feed, hug and even kiss these amazing mammals.  Nick was completely engrossed. As the trainer had the dolphin roll over Nick quickly bent down to give the dolphin a “raspberry” on its belly.  The trainer remarked, “Well, THAT’S a first”.  Leave it to Nick,  I have a feeling that trainer will never forget him!

raspberry

The final portion of the dolphin encounter included interaction using hand signals. This was a huge splash as they were able to gesture and the dolphin would clap, twirl around, move backwards, and jump high in the air.  As I stood behind the camera filming, I was deeply moved.  This day was such a beautiful gift and the photo tells the story that Nick indeed was connected and absorbed in this moment.

Nick and his Dad……

Nick Kiss

Nick still likes to watch the video footage from that day. Two of his favorite movies are Flipper and A Dolphin Tale. I have to think that this unique experience will forever be one of the best things we have done for our son and together as a family.

Nick’s brother, Hank and  his cousin Anna….

dolphin photos 07 002 (2)

When you have a child with special needs and limited speech it can be extremely challenging to know what they are thinking, feeling and what they truly love.  I had a hunch that this experience would be a slam dunk.  Indeed, it was and then some.  My heart is warm in knowing that we could give this to him.   That’s what is in my noggin this week. 🙂

~Teresa