Posted in Autism, Down syndrome, Education and Special Needs

Blog #132~Countdown to the End of School

#132~Countdown to the End of School


The clock is ticking, and rapidly might I add.  Coming off the holidays, I’ve hit the ground running.  You see in less than a month my son, Nick will be aging out of the school system.  He is 21 years old and has Down syndrome and autism.  The day before his 22nd birthday will be the final day that the little yellow bus stops coming to the door.


We’ve been preparing for this day for months.  The post-secondary transition program he is attending (STEPS) has done an excellent job to map out a plan for this to be a seamless transition.  Last Friday, Nick visited the new facility (an adult day program).  His speech therapists took pictures and made a social story for Nick.  A person with autism benefits from having a visual schedule.  If they can see it, they can understand it.  This helps with reducing anxiety levels.  Here are a few of pictures from the social story:

Adult Day program site……


Nick in the gym….

Nick gym

Nick will have a recycling job, elbows to that!

Nick recycling

Starting this week, Nick will be going to the new facility for half the day on Tuesday and Thursday.  The next couple of weeks he will expand his time there.

The other piece of the puzzle is transportation.  We have to insure that Nick can utilize the Ride DuPage successfully on his own. He will be doing some practice runs with his job coach. Then, if all goes well on his own with someone to meet him at curbside. We have requested a car to pick up rather than a bus.  This is the piece of the puzzle that keeps me up at night.  It’s uncharted territory that is giving me anxiety.  Nick actually does well in the car as he likes to be on the go.  Just make sure the window and door locks are set, he has some tappers to stim on and nothing to throw at the driver. I should pick up some Windex wipes so he can wipe the snot rockets off the window as well.  🙂

As the clock is ticking, I’m busy getting him to doctor and dentist appointments, arranging for a new  talker device and case (his current AAC device has to be given back to STEPS) and working with insurance to hopefully get speech and occupational therapy set up in his  new program.  In addition, the waiver to which Nick receives funding thru the state will need to be switched from the child to the adult waiver (which will increase his funds to support the day program).  The pressure is on, this needs to work, it has to work.  Nick needs to be in a structured program.  And this is an excellent one with a caring and qualified staff.  And I need to keep teaching my fitness classes and have my own life (and sanity).  Wish us luck, that’s what is in my “nervous” noggin this week.


Follow Nick:


@Down Syndrome With A Slice of Autism









Posted in Autism, Down syndrome, Tech Stuff/Apps and Video Based Instruction

Blog #80~Getting Organized Along With My Autistic Child

Blog #80~ Getting Organized Along With My Autistic Child

Is it odd that I like to have all the labels turned straight in the food pantry and the towels stacked perfectly in the bathroom closet?  My hangers might just be color-coded (white=shirts, gray=pants, teal=capri length pants).  I wasn’t always so compulsive. 

I’ve touched on my theory about this in previous blog posts. Simply this, I need to feel in control in my home and creating order helps keep me grounded.  Having a child with Down syndrome and autism under your roof is not exactly a “Zen” environment.  Nick’s world can be chaotic.  Just go back to the April 2012 archives and read Blog #3~Getting your Goat for a little taste of crazy. 🙂

This is just one of many things Nick has dumped on the floor…..

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So over the weekend, I got on a roll. Operation Re-boot 2014 inspired me to get organized.  First stop= Clean out the paper pile and mail that accumulated over the holidays and made my “to do list” for the week.  Next, Put away the Christmas gifts and stuff from the Florida trip that I stashed in the dining room…….

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I opened the medicine cabinet to put the cold meds back (that had been sitting in the dining room for over a week).  Suddenly, an avalanche of allergy boxes spilled out and bonked me on the head.  Guess what the next stop was?

Wow, it’s been a long time since the medicine cabinet was cleaned out!  Nice expiration date…. 11/06 on the Tylenol bottle…..What the? 

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Voila, purged, organized and labeled!

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Next stop= The island of misfit socks. Maybe some will reunite with their mate…..

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Last stop= Clean out the fridge

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After a long day in full steam OCD mode, I felt lighter and more in control of my living space.  The chi energy was once again flowing freely~~~~~~~~ aaahhhh!

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Getting organized helps us to better plan daily activities and use our time more effectively.  It’s not easy for some people with Autism Spectrum Disorder (ASD).  The nervous system is not always in sync which makes things difficult to process sensory information.  This can lead to feelings of disorganization, agitation and being overwhelmed. According to the National Autistic Society, “Challenges are found in processing information, predicting consequences of an action, understanding the concept of time and executive function (focus on details instead of the whole picture).”

Most of us use certain strategies to help organize our day.  I use an old school calendar that is color-coded in the kitchen.  At a glance events are highlighted and easier to spot. Teaching fitness classes=green, appointments=pink, birthdays=orange, vacations=purple, etc…  Color coding and other strategies can also be equally as effective for people with an autism spectrum disorder (ASD). Here are some practical ways to teach and implement organization:

Visual supports

Social Stories give a blueprint for what is expected for behavior, what is on schedule and changes in routines.

Pictures (Picture Exchange System called PECS)

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Note Nick’s room has pictures labeled on his dresser to help him find and put away his own clothes.  Teaching organizational skills to persons with autism fosters independence…

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Written or visual with pictures keep persons on task and also registers achievements.

Electronic Devices

Phone and iPod apps are available to make schedules, set alarms and timers and act as general reminders.  See Blog #52~Tech Time located in the April 2013 archives for specific suggestions. Here’s one…….

picture schedule app

Task boxes, envelopes and files

Store media devices, work bins and personal items in set places helps to teach responsibility.  Nick’s area includes his PECS Communication book, media storage box and theSTOP Box (which I hand him when it is time to surrender an item and transition).

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Nick’s work bins that he can retrieve and navigate independently….

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Getting things organized helps all of us feel more in control and makes for a more efficient use of our time.  Putting strategies in place to help persons having autism spectrum disorder can make a huge difference.  Their world becomes easier to navigate, which in turn lessons anxiety.  It’s all about staying in the Zen zone.  That’s what is in my noggin this week.