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

Re-post~Flying with a Special Needs Child

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Re-post~ Flying with a Special Needs Child

I often get asked the question of how Nick does flying on airplanes?  It’s not easy having a child with special needs, let alone Down syndrome and autism.  Since it’s prime vacation time for many families I thought a re-post of this blog might shed some light on how Nick does on airplanes…. How do you NAVIGATE?????


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


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…….


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…..


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. 🙂


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

Summer Vacation Update

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….


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…..


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. 🙂