Posted in Down syndrome, Fun Side of Nick

Vacation and Special Needs Child

Vacation and Special Needs Child

Last week, Nick put together this task strip.  I think he is ready to go on our annual vacation to the Outer Banks, NC (OBX)!

OBX Task Strip

We have been going to the Outer Banks for the past 5 years. Nick loves the water.  It’s not easy getting a child with special needs to swim independently.  Nick is now 21 and has Down syndrome and autism.  Here’s some information on how he learned how to swim and why we love the beach so much@

I hope that you all find your happy place and get to relax this summer.  I know Nick is ready to go!  That’s what is in my noggin this week.

~Teresa 🙂


Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #121~10 Years of Autism

Blog #121~ 10 Years of Autism

Last Saturday, the Chicago White Sox gave a replica of the 2005 World Series Ring to all the fans. This was to commemorate the 10 year anniversary of the Sox winning the World Series.

This sure beats the heck out of any bobble head they’ve given out…

White Sox Ring

I slipped the heavy ring on, that Al brought home from the game. I thought back on the week that the White Sox won the American League Championship securing their spot in the World Series. That was the week, that we got the firm diagnosis that our son Nick, had autism. Nick is now 21 years old and has Down syndrome along with autism. A lot has happened in the last 10 years, and I’ve learned plenty in the process.

Sox  Nick and mom

What about the 11 years prior to the diagnosis of Nick having autism? Well, when he was 5 years old we had him tested but it was found that he was not on the autism spectrum because he was highly social and the oddities were due to having Sensory Integration Dysfunction.

According to the Sensory Processing Disorder Foundation (SPD Foundation), “Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”)

is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”

Nick sought out input by tapping objects, walking heavily and stimming with his toys to help organize his senses. His occupational therapist worked with him weekly providing him with a sensory diet.

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In addition, Nick also has Verbal Apraxia of Speech (an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability). The sensory and speech conditions blurred the lines, therefore the autism didn’t come to view at the time.

As Nick entered the throes of puberty, it became evident that there was more to his behaviors than just Down syndrome. That’s when we sought out Little Friends Center for Autism to do an assessment 10 years ago. Looking back I had a hunch he did. However, part of me wasn’t ready to face such a daunting diagnosis as autism. We got the report from Little Friends the day that the White Sox won the ALC championship. That report was the key to opening up a new world for us.

The official diagnosis of autism, allowed us to request more specific services for Nick. This included a better communication system, behavior plan, training, finding the NADS (National Association for Down Syndrome) support group for dual diagnosis families, and respite care through the state. With the help of Little Friends, I attended training sessions to help Nick foster independence and better communication. More importantly, I learned how to get my son toilet trained once and for all, and out of those Depends diapers.

Nick has grown a lot in the last 10 years. Things are not near perfect, nor will they ever be. We face our daily  battles. He is still stimming and raising autism awareness everywhere he goes. But the meltdowns are fewer and far between. Nick is happy and a funny guy. And when I see him standing there in his boxer briefs I am reminded of perhaps the greatest accomplishments in my life. I’m proud to say that we are done with what our autism community refers to as “Code Brown”

No more poop smears!

poop icon

If you are a parent and have a hunch that your child may have autism, this is my wish for you. That you go get an assessment, take that piece of paper and use it as your ticket to get the services to help your child.  Seeing where Nick is today is a sweet victory that I savor.  It feels like I’m winning the series in Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

Posted in Autism, Down syndrome

Blog #120~Lessons Learned on a Zip Line

Blog #120~Lessons Learned on a Zip Line

Recently on a vacation to Punta Cana in the Dominican Republic, my siblings and I decided to book an excursion to go on a zip line.  It seemed like a good idea at the time. You know something to knock off the bucket list.  That is until the crew at Runners Adventures began to strap the equipment on me.  The instructor explained the zip line course, proper technique and hand signals to watch for.  There were 12 lines total, the first few were lower.  All I had to do was make it through the first set and I could bail out.  As we climbed the stairs to the first cable, the fear began paralyzing me.

The staff person clipped the metal hooks over the double cables and instructed me to sit back, tuck my knees in, and to rest my hand on the cable and keep it relaxed.  I let go of my clenched fist and glided to the other side (and without one single scream or swear word).  The second line was a fast one, 6 seconds to the other side (oh and be sure to smile because there was a photo op).  I came down that line like a bullet and finished feeling like a crazed, adrenaline junkie.

zip line

The stairs leading up to the rest of the lines got higher and the cables were longer and more risky.  My brother in law could see the look on my face, that of singular focus. He reminded me to take time to enjoy the scenery.  I kept my hand loose soaring with ease and taking in the beautiful views. By the way, I made it through all 12 lines. 🙂

Zip line view

Later at the beach, I glanced out at the brilliant, blue Caribbean ocean reflecting on the adventure……


Sometimes, we need to push ourselves way out of the comfort zone.  Doing something so scary and unfamiliar forces you to face life’s uncertainties.  I have a lot of fears regarding my son, Nick.  He is 21 years old, and has Down syndrome and autism.  I worry about his future after he finishes the post-transition program next February.  I’m uncertain about him living in a group home someday.  Who is going to insure his safety? How will I know if he was possibly neglected or abused, since he has very limited speech?  Will he think that I have abandoned him? Will he be fulfilled and loved as much as he is here at home?

Nick enjoying the hot tub on our deck……

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I learned a few things on the zip line.  Even if you are uncertain, you have to trust that the staff has your back and just let go.  At some point, I need to loosen my grip and trust that others can take care of Nick in the future.  It’s okay to be uncertain; but those fears can hold you back, and you might miss a great ride.  In fact by relaxing my hand and letting go, I felt a spark ignite inside me. That’s what is in my noggin this week. 🙂