Posted in Autism, Down syndrome, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #100~20 Tidbits about Nick

Blog #100~ 20 Tidbits about Nick

To celebrate the 100 milestone of this blog “Down Syndrome with a Slice of Autism,” I made a list of 20 things about my son Nick.

Nick 20 years ago, what a little kewpie doll…..

Nick baby

1. Nick was born the day after his Dad’s birthday.

2. Nick was in NICU and on oxygen for one week due to an AV valve in his heart not closing.  Fortunately, this closed up within a week.  He was released from the hospital on Valentine’s Day which was also Ash Wednesday.

Aqua heart

3. Nick started early intervention with speech, occupational and physical therapy at 8 weeks old. They taught him sign language. He worked on a stability ball to build core strength long before it became trendy.

4. Nick was the youngest child to start horseback riding therapy in the early intervention program at age one.

5. We use to prop up pillows on the sides of his high chair to keep him from flopping over to the side, until his core became stronger.

Nick high chair

6. Due to his low muscle tone (a trait of Down syndrome) he didn’t walk or eat solid foods until he was 3 ½ years old.  We did a co-treatment with extensive OT and speech therapy with a feeding specialist using the Debra Beckman feeding technique

7. Nick doesn’t like yogurt or applesauce because I’d mix this awful smelling and tasting Nutrivene Vitamin Supplement into them.

8. To get Nick to pull up to stand, his brother would bounce ping pong balls on the coffee table to catch his attention. I also hung several music toys over the fireplace so he had to pull up to his feet to hear the music. (Hmmmm, maybe that’s why he’s obsessed with pushing buttons.) 🙂

9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.

Nick Eiffel Tower

10. He has been overseas three times including London, France and Spain.

11. Nick can replicate exact sneezes, high and low pitch, big and small ones.

12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.

13. Nick’s a thrill seeker and will sign “more” as soon as a roller coaster ride is over.

14. He hates to wear hat and gloves no matter how cold it is.

Nick sled

Unless he’s indoors :)……….

Nick Winter Ninja

15. Nick’s favorite actor is Eddie Murphy, in the movies The Nutty Professor, Doctor Doolittle, and Norbit.

16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them). He does LOVE salads.


17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.

Nick Special Olympics

18. Nick was evaluated for autism at age 5, but didn’t get a formal diagnosis until he was 11 years old.

19. Nick has a thing for dolphins and beluga whales.

Nick Kiss

20. Before the 30 fire alarm pulls, Nick would grab car remote keys and set the alarms off.

Hope you enjoyed the 20 snippets about Nick.  Thank you so much for reading and sharing Nick’s world for the last 100 blogs.   That’s what is in my noggin this week. 🙂


20 Year Old Nick…..

photo (120)

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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!