Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Fall Update: Nick DS-ASD

Fall Update: Nick DS-ASD

Time flies when you are having fun, and Nick is having a blast this fall.  My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  He attends an adult day program which provides a wide variety of activities.  Community outings this fall included volunteer jobs, bowling, visits to local parks, fire station, grocery shopping and going out to eat.  His group also works in-house doing gardening, cooking, skill along with communication building using their Augmentative Alternative Communication (AAC) devices.  Nick uses a program called Touch Chat on an iPad for communication.

Nick cooking at his day program…..

Nick cooking meatballs

Nick was very excited to visit the fire station 🙂  He wasted no time buckling up right away….

Nick fire truck

Outside his adult day program, Nick enjoys community visits to the library, mall, parks, shopping, the movies and eating out.  He continues to have “date nights” meeting up with his buddy, Christopher.  We are very grateful to have such caring respite workers, to take him out several times each week.

Fun at the Halloween Store…..

Nick crown

Buddy Up Tennis, see Blog #190 to read all about it @https://nickspecialneeds.com/?s=buddy+up

Nick buddy tennis 2

Nick relaxing at the library.  Make yourself at home there, Big Guy….. 🙂

Nick library

That’s Nick’s world and update for this fall.  I would like to take a moment to thank our respite workers, Lara, Jodi and Kelsey for all they do for Nick and our family.  My son has a full and rich life, and we are grateful to have these supports in place to make this possible.

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

~Teresa 🙂

Want to see more pictures of Nick?  We have a lot more on social media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #116~A New Talker for Nick

 

Blog #116~ A New Talker for Nick

Nick has a new talker!  The SETT meeting team looked at Nick’s needs as a student along with his environment, tasks he does and what tools would be needed to help him effectively communicate. Nick is using an iPad with the Touch Chat program.  This Augmentative and Alternative Communication device (AAC), is bigger and the buttons are much easier to push.  It has more keys on the home page making it easier for him to navigate.  Each team member went through a training orientation on the device to learn how to sift through the keyboard and customize it to suit Nick’s particular needs.  Nick is 21 years old and has Down syndrome and autism.

Nick’s new AAC Device….

ipad touch chat

Nick’s speech therapist introduced the device at school.  He was very excited along with his peers during group.  The first thing they did was to take a “selfie” of Nick (and he pressed the button) to add his photo to the personal page.  This page also includes his age, the town he lives in and that he has a cat named Kibbie and assisted in getting Nick to “buy in”.

Kibbie 🙂

Kibbie

At home, Nick navigated through the keyboard very well.  Here are some of the requests and comments he made:

*Nick pushed pulled out juice box and requested juice on talker

*Nick pushed “baseball” and walked to cabinet where they were pointing (wanting his can of tennis balls)

*Nick pushed “tired” before laid down for a nap

*Nick pushed “salami and cheese”, after nap and then pushed “soda”

*Nick pushed “salad” “mashed potatoes” as he unloaded dishwasher

*Nick pushed “phone” after his dad got off the phone to his parents and pushed Grandpa/Grandma

*Nick pushed “bathroom, shave, shower” while waiting for dinner

*Nick pushed “dessert”-Cake after dinner

We are off to a good start with Nick using the AAC device.  The iAdapter case is pretty rugged, Nick’s already thrown it a few times (shocker right).  However the stand that props it up has broken after taking a few hits. When he is in a throwing mood, I tuck the device out of sight so it won’t be damaged further. One thing I noticed right away was how territorial he was with it. He also found his way through the keyboard better than I thought he would.  At one point he pushed the category called “Groups”.  Then, he hit “Jobs” and found the “Firefighter” button which he hit a dozen times.  You can view a video of this on the Facebook page: Down Syndrome with a Slice of Autism.  By the way, why is there a “Pirate” is a button in the “jobs” category?  🙂

Nick fell asleep with it on the couch the first night….

Nick touch chat

Stay tuned for more about Nick’s communication device.  That’s what is in my noggin this week. 🙂

~Teresa

 

Posted in Down syndrome, Speech and Occupational Therapy

Blog #2~ Language Barriers

Blog 2~Language Barriers

Rewinding this week back to when Nick was six years old.  At the time, Al’s brother and family (Ron & Ali along their kids Anna and Sam), lived in London.  For the second time we flew overseas to visit them.  Years ago, we had decided to never let Nick’s disabilities hold us back from getting out into the world.  Here is a little bit about the second trip over.

I love England; everybody gets what you are saying even if you pronounce it wrong.  “Where will you be staying?”  Asked the customs clerk with her proper English accent.

“Esh-er” I exclaimed like a true native Texan would say.

She followed up, “Oh you mean Eee-sher,” using a long “e” vowel sound. I didn’t mind that she corrected my phonetics. Everyone was so nice and accommodating.  The town of Esher was quaint, just outside of London with pubs a plenty.  Cheers to the pubs they are family friendly and the pints of beer go down smooth.

Then, we hit the “Chunnel” which is the train that travels undersea from London to France. There is a different feel in France.  They seemed very put off by us; the stupid Americans in our tennis shoes, jeans, ball caps and fanny packs.   First stop, the Eiffel tower. Al, Ron and Nick made it to the top. Nick is fearless that way, the rest of the kids were scared.  Ali, Anna, Sam and my older son, Hank and I had to stop halfway up.  There is a small café at the midpoint.  We each ordered a hotdog, well sort of.  The order came out with each of us receiving not one but two foot long hotdogs inside a thick, crusty baguette a piece.  What a spectacle we were.  We couldn’t help but laugh at each other while the crust exploded with each bite sending crumbs jettisoning all over us.  We were in over our heads.  This would be the first of many times that the language barrier would get in the way.

The next day was grand a tour of the Notre Dame Cathedral.  Up the narrow, spiraled staircase we made our way to the top to see the gargoyles.  About halfway up Nick started dragging his feet so Al and I took turns schlepping him on our backs like pack mules.  The sound of the chimes was resounding and felt deep in the soul.  Hank imagined the grotesque hunch-backed bellringer, Quasimodo dangling from the rope to sound the time.  One thing I would suggest to anyone touring in Europe, do not wear flip flops.  Not only is there a lot of walking, but those stony steps are centuries old, worn and slick.  My feet have never been the same since that trip up to see the gargoyles.  One by one, we checked off the sites off our bucket list.  Mine was to sit at a sidewalk café and sip champagne where the artists are lined up.  Cheers to a successful day two, with no surprises.

The river tour along the Seine lovely but with one exception, the guide spoke French.  Every meal was a mystery with surprises like a fried egg on top of a hamburger patty and negotiating at the shops and trying to get taxis was frustrating.  We found ourselves lost in translation.  A few days in Paris were enough for me.  I was ready to get back to England, and be understood again.

I think about my son Nick, who has a limited vocabulary.  He often gets frustrated in trying to communicate his needs much like I did in France.   It is a feeling of helplessness and of being lost in many respects.  For Nick and others who are on the autism spectrum, supports are needed to help them convey their needs.   We use a picture symbol system called “Picture Exchange Communication System” or “Pecs.”  If Nick can see it in picture form, he can understand it.  These supports are Nick’s voice.  It is the tool that has given him his power and ability to navigate in the world.  When he feels like he is control, he stays even keeled and less apt to have a meltdown.

We have utilized the resources of our local agencies and the school staff to train us on how to support Nick.  In addition, we use Google images and laminate additional icons which he recognizes.  The pictures not only allow Nick to connect but also help to set his schedule for the day.  He follows it pointing to each icon as if he were reading a script.  Which is exactly the intent, set up the scene for what is to come and in return the anxiety level stays low. For instance we are going to mass.  Here is how the icons are laid out:  Church-Priest-Quiet-All Done-Car-Home-Sprite (reward.)

When Nick wants to ask for something it is usually something like this:  I want-Car-Mall-Taco Bell- Tacos & Sprite. Here is a menu icon board for B-Dubs which allows him to make choices on his own:

In the last few months we have purchased a portable hand held device that has the icons built in called Touch Chat. More on this in future blog entries…stay tuned..

After that trip overseas,  I totally empathized with Nick.  Paris taught me about language barriers.  The need to feel understood and have ones needs be met is something that is essential for all of us. Speaking of expressing wants and needs please let me know of what other topics you would like to hear about… That’s what is in my noggin this week… until next Monday!

~Teresa