Posted in Autism, Behavior/ ABA, Down syndrome, Uncategorized

Blog #93~Down Syndrome & Autism and Getting Help

Blog #93~Down Syndrome & Autism and Getting Help

Last Saturday was the National Down Syndrome Association (NADS) Retreat. NADS serves families in the Chicago area.  This retreat is specifically for families that have a child with Down syndrome and autism. There is a children’s program that includes play time and swimming where respite workers are provided by NADS. Nick loves going to the retreat.

Nick enjoying pool time at the NADS Retreat a few years back……

Nick 2 (2)

The children’s program also has music therapy.  Here’s Nick jamming last Saturday……..  🙂

nads retreat music therapy

The parent agenda this year was to tackle some of  areas that we’ve all been struggling with.  Dr. Louis Weiss, Ph. D. lead a guided discussion of the top five topics chosen by the families attending the retreat. The five areas of discussion included:

  1. Getting respite care and funding for it.
  2. Teaching
  3. Behaviors
  4. Parental and family stress
  5. Dealing with systems.

One family posed the question about their child and regression of behaviors. Dr. Weiss made a comment which resonated with me. He said that regression can happen during periods of transition. Regression is a way to prepare oneself to move forward. If a person doesn’t feel safe they will pull back first before they can launch themselves forward.

I had as Oprah says an “Ah-ha moment”.  Last fall, my son Nick (19 years old) out of nowhere began to wet his pants repeatedly at school. I figured it was stress because he was starting the new transition program. But after hearing this comment it all made sense now. He was trying to deal with a new setting and a crowded bus. Nick didn’t feel secure and his behavior reflected just that.

Speaking of stress, there is a great deal of it for families raising a child with Down syndrome and autism. Let me put a lens on what we talked about. Imagine having to wash the sheets every day after your 14 year old wets or soils them.  Or how about this?  The constant worrying that your 12 year old may take a dump in the neighborhood pool and shut it down. Picture a 15 year old getting off the bus and plopping down in the middle of the street.  He won’t  budge for a solid hour.  You have to stand there and direct traffic around him because no one stops to help out, and you forgot your cell phone.

Here is the takeaway that I got from this session. Dr. Weiss suggested that we need to figure out what causes us to suffer. Then look at re-framing the story, in essence figure out a way to fix it. Maybe it’s hiring a sitter to come in and wash those dirty sheets. Perhaps counseling could help with the stress.  In addition, just getting  a new set of eyes on the problem may help.  This can be done by contacting an advocate or behavior support specialist.

We spent the afternoon building a resource list, networking, sharing our struggles and offering advice to support each other. By the end of the day, parents walked away loaded with more power in their arsenals. I am grateful to have the support of NADS and the retreat. It’s good to share struggles, successes and get help.  Plus, no one in our group bats an eye if a kid is tapping shoe insoles against their mouth, stimming on a karate belt or plopped right in the middle of the corridor.  These guys remind me that I’m not alone on this road navigating Down syndrome and autism. That’s what is in my noggin this week.


🙂 One last thing, Did you notice I changed the title of my blog to Down Syndrome With A Slice of Autism? (Though some days I think it’s the other way around) 🙂


I also have a new Facebook page with this title. You will find some new things here including weekly videos of Nick being silly. If you are on Facebook,  please take a look at this page: Down Syndrome With A Slice Of Autism and I’d appreciate it if you would like the page!like button







Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting, Uncategorized

Blog #92~One Yellow Hash Mark at a Time

Blog #92~One Yellow Hash Mark at a Time

I just finished this book written by Chad Hymas:


Chad had everything, a beautiful wife, two sons and a thriving business. One evening he made a rushed decision to ignore safety in favor of getting home quickly. Chad was anxious to see his baby boy take his first steps. On that day in 2001, at the age of 27, his life changed in forever when a 2,000-pound bale of hay shattered his neck leaving him a quadriplegic.

What follows is the story of how he fought back to gain his independence and ultimately setting a Guinness World Record by wheeling his chair from Salt Lake City to Vegas (513 miles) in 2003.


This was no easy task for Chad. There was some good news. His spinal cord wasn’t severed. He was able to regain important functions and have wrist movement as well as function in his biceps. In the book, he talks about starting out with his “personal Guinness records”.  They were the very basic things that most of us take for granted like putting his own shirt on, brushing his teeth, shaving, and even getting his drivers license. Chad overcame unsurmountable obstacles and continues to inspire others with his message on all 7 continents and 38 countries. He did it by letting go of his old ideas of who he thought he would be and reinvent himself.

The quest to set that Guinness World Record was daunting. The first few days went well. But the desert heat beat down on him, leaving his hands blistered and bloodied. He hits a wall, not able to fathom going another six days. His dad tells him to think of it as one day, not six days. He says “Just do one more day”. With his Father’s encouragement he broke down the goal into smaller increments. One day at a time became one mile at time. He was 90 miles away from his goal. But the mile markers seem too far apart. His Dad steps in, “Son, don’t give up. Break down the goal even more. Instead of mile markers, count the yellow stripes in the middle of the road. They come faster. See if that helps.” After eleven days Chad Hymas crossed that finish line setting a new Guinness World Record!

As I read his powerful message, I thought of all the “personal Guinness records” that my son Nick has mastered. Nick is 20 years old. He has Down syndrome and would later be diagnosed with autism. Low muscle tone is a trait of Down syndrome. It affects not only gross motor skills but also chewing and swallowing food.

A very low tone Nick flopping over on his brother, Hank……


My son would not eat textured foods nor would he walk until he was nearly 4 years old. All the tasks to get him there were broken down, just as Chad Hymas did. It took Nick a long time to become independent with dressing, brushing his teeth and shaving. But he has hit all of those benchmark and then some.

I never imagined Nick would be able to do something like scuba diving…

Diveheart 2013 336 

Chad Hymas reminded me of something important. “Shift the focus on what I can do.”  His friend and mentor, Art Berg was right, “You and I can do anything anyone else can, if you’re willing to do it differently.” As I continue to help Nick become more independent, I am going to keep Chad in mind and tackle each task one yellow hash mark at a time. That’s what is in my noggin this week.


For more information about Chad Hymas:


Posted in Autism, Resources for Special Needs

Blog #91~Autism Statistics: 1 in 68 Children

Blog #91~Autism Statistics: 1 in 68 Children

As most people know, April is Autism Awareness Month. Just a few weeks ago came the sobering news that 1 in 68 children in the US have autism (according to estimates from CDC’s March 2014 study).

autism 1 in 68

Take a look at how the numbers have increased over the years…..

autism through the years

The new statistics represent a 30 percent increase from the 2012 estimates of 1 in 88 children with autism. Why are the numbers growing so rapidly? Some speculate that it’s because the diagnostic methods which have improved over the years. I find it hard to believe that this is the only reason that the numbers are increasing. According to TACA (Talk About Curing Autism (, More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. In addition, autism costs the nation over $137 billion per year, a figure expected to significantly increase in the next decade.”

Autism has no single, known cause. There have been numerous studies linking autism to a wide variety of genetic and environmental factors. There have been several studies linking vaccines to autism and many parents who feel strongly that this was the case with their children.

Here’s the bottom line, there is a generation of children and their families who have been severely affected by autism. These children, like my son Nick are growing up and becoming adults.

Nick age 20……


Children and adults with autism are out in the community full force, with even more coming behind us. It’s time for a comprehensive national strategy. We need leadership to help us find answers for causes, treatment, solutions and resources for people who live with autism. We need compassion when we are out in the community struggling with our kids who make loud noises, flap their hands and have knock down drag out meltdowns. Changing the light bulb blue to promote  autism awareness isn’t going to help make things better for the lives of those affected by autism.

light it up blue

It’s time to send a loud message to Washington that the needs of the autism community are growing rapidly and the resources are limited, (not to mention the family bathrooms). I worry that when my son ages out of the school system at age 22, he’ll be stuck on a waiting list because there aren’t enough facilities available for community work, leisure and a secure group home. I am not alone here; there are almost two million others in the country who go to bed each night with the same concerns. That’s what is in my noggin this week.


Posted in Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #90~Autism Awareness Nick Style

Blog #90~Autism Awareness Nick Style

It’s April which is “Autism Awareness Month”. Believe me I am quite aware of autism. Nick never lets me forget, nor anyone else who is around him. Last week was spring break. My twenty year old son who has Down syndrome and autism was lighting up more than just blue. Here are the highlights…

Day one of spring break:

Nick is pushing every button he can find, microwave and bathroom fans, turning up the TV volume to 99 and finding the one button on the iPod home which blasts Hispanic radio music. It’s going to be a long week. The music is heavily laden with the sounds of trumpets, trombones and accordions. By the way, the radio station is WLEY-FM (107.9 FM La Ley) features a regional Mexican music format focusing on Ranchera.

la ley

Day two of spring break:

It started out with Nick popping up at 6:30am. He came in and pressed the iPod home button to 107.9FM next to my bed as he giggled and let out a big fart. He followed this up with an early screening of “Grown Ups” (volume level 99) and blasting the water faucets. Thankfully Lara, his respite worker took him to see the new Muppets movie and out to lunch. That afternoon, he crawled into bed with his DVD player wearing his blue sunglasses. The “Grown Ups” movie may get deep sixed before this week is over.

IMG02 (3)

Day three of spring break:

I got a 5:15am wakeup call from Nick, (mind you on any school day I have to throw a stick of dynamite in his bed to wake him up). I put him back to bed and managed to sleep in until 7:30am. Morning coffee time was drowned in you guessed it another showing of the movie, “Grown Ups”. All day long nothing but yelling, tennis ball can tapping, and microwave/ phone intercom button pushing. In between those antics, Nick would run upstairs to push the iPod to 107.9. Viva Nick! The noise can be mind numbing, not to mention the snot rockets he blows and wipes across the flat screen TV. Today is “World Autism Awareness Day”. Believe me I am well aware of it.

Day four of spring break:

It’s cold and rainy, but at least he slept in until 7:30am. Nick watched movies with his respite worker while I went in to teach stability ball and step classes. He was even sillier today, must be the cabin fever. I’ll let the pictures speak for themselves.

Silly guy 🙂 …..


His favorite dumping spot, behind the flat screen TV.  Good news, I found my shoes….


Poor Stuart Little…..

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Day five of spring break:

It’s my day off from teaching and thankfully Nick slept in until 9:00am so I was able to enjoy my first cup of coffee in peace.  He was pretty good today, with the exception of a few button pushes, blasting 107.9 and flicking the bathroom light on and off while I showered. It was cold and blustery so we bundled up and headed out to Taco Bell.

Nick loaded up with stims……


He was so excited when we got there. Just one problem, the ice machine wasn’t working. Nick stood there pushing the ice button to no avail for several minutes. He wouldn’t budge. One thing about autism, any change in routine is a possible trigger to set him off.

IMG01 (2)

I finally got the attention of a worker who was able to fill up our cups with ice behind the counter. Meltdown, deflected….. whew!

Day six of spring break:

Hallelujah, Nick slept in until 10:00am! Thankfully he chose to watch a different movie…….

The other guys

I took him out to eat at Burger King. We usually go out later around 1:30pm to avoid the lunch crowds and curious stares. I couldn’t believe it, when we walked up to the drink station guess what? They were out of Sprite…. are you F’ing kidding me?


IMG02 (2)

I asked Nick if he wanted Coke or Minute Maid Lemonade. He screamed and pinched his cheeks hard. We made it to the table but he wouldn’t eat.  He kept clutching and pulling at his cheeks.  Finally, he started to eat his fries but wouldn’t touch his drink. “Nick, want to drink your Coke?”   He let out a big yell. Another couple whipped their heads around staring at us. I smiled and said, “That’s autism, isn’t it nice?” After eating all his fries and chicken tenders he finally took a sip of his drink and let out a burp and a smile. Whew, meltdown avoided. This calls for some ice cream…..

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The sun came out and the temps were warming up close to 50 degrees, so we took a walk in the park.  It was a nice, peaceful ending to a long week.


It’s not all noise, pranks and chaos with Nick. He does sugar coat things with his smile, hugs, kisses, snuggles and elbow bumps. I’ve come to appreciate his creativity and sense of humor that keeps me on my toes. Hope you enjoyed my installments of autism awareness, Nick style. That’s what is in my noggin this week.