Posted in Fun Side of Nick, Speech and Occupational Therapy

Blog #82~Hats off to Nick

Blog #82~Hats off to Nick

I’m sitting in the kitchen looking out the window. The sun is gleaming across the snow covered yard but it’s deceiving as the thermometer reads -1 degree.  Nick is home as the school district declared yet another snow day.  So we are hunkered down as this polar arctic blast paralyzes the city and a large portion of the country.

artic blast

I’m a Texas girl, when the temps dropped down to 50 degrees I use to whine. The whole state shuts down when hit with snow and ice……..

texas ice storm

However all that has changed since living in Chicago.  My threshold has altered significantly.  The other day I headed out to teach a spin class, it was 29 degrees. I felt like I didn’t need a coat.  One thing I have to say about Nick is that no matter what the thermometer says he is always barefoot around the house.

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Even in the dead of winter he has never liked wearing hats and gloves.  A 6 year old Nick taking on the backyard hill……..

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Many of my friends who have children with a dual diagnosis of Down syndrome and autism can relate.  We can tell you at least one story about our youngsters stripping down buck naked for no apparent reason.  That’s how our kids roll. Boy am I glad those naked days are over with Nick, especially this winter.  As long as I can remember, it has been nearly impossible to keep hats, gloves and shoes on Nick in the winter.  My friend, Susie use to share stories about Nick when the bus pulled up to get her son.  As soon as the door opened, out came a flying shoe. Hardy har har…..  Susie would have to pluck it out of the snow and hand it back to the bus aid.  Well played Nick, well played 🙂

Nick and hats, they just don’t go together.  He barely keeps one on from the walk out the front door to the bus.  He won’t wear his jacket hood either.  His occupational therapist has been working with him to put them on independently along with tolerating it for longer periods of time.  He’s getting a little better with it. When I picked him up the other day, he sat patiently wearing both a hat and gloves.   I asked the OT, how she got him to put them on.  She said, “I told Nick, its cold outside, put these on”.  Funny how they listen to the therapists and become compliant.   So I’ve been leaving a variety of hats sitting out in case he wants to try one on.  Over the past month or so, he is actually giving them a go.


This morning he put on his Dad’s gloves……

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I wish he would wear hats more.  He looks so cute in them. This one lasted well over 15 minutes.  Bravo Nick!


But for now, I’ll just be satisfied for him to keep a hat on outside in the subzero elements. Hat’s off to Nick for trying to keep them on longer.  That’s what is in my noggin this week.  Stay warm my friends and let’s hope the groundhog doesn’t see his shadow! 🙂



Posted in Autism, Down syndrome

Blog #81~Dreams for the New Year

Blog #81~Dreams for the New Year

This year I decided on just one resolution.  I am going to require more of my self.  Oh wait one more……Keep the bird feeders filled up!  As I wrote in Blog #79~Reboot 2014, I have a need to start fresh.  It’s time to move past the “stuff called life” that got in the way in 2013.

I have to stop making excuses like “I’m too busy to work on my goals and dreams”.  So, in all areas of my life I am requiring more of myself.  This includes at home, work, writing, personal ambitions and what I expect from Nick (my 19 year old son who has Down syndrome and autism). A good friend of mine gave me a plaque for Christmas which I keep near my laptop.  It says this:

“Believe you can, and you’re halfway there.” ~Theodore Roosevelt

I’ve cracked my knuckles; gotten things organized around the house, and feel ready to take on 2014.  How about you?  What are your dreams for this year?  What is going to keep you on track?  For me visual cues help, much like the icons that Nick uses to navigate his day……..

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My new plaque is a nice reminder to stay on track.  All around the house I’ve sprinkled trinkets around for inspiration…….


I know exactly what my sister Laura, is thinking right now.  There she goes again, deep thoughts by T!

Nick with his Aunt Laura and Uncle Scott…..

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Yes I have a reputation in my family of getting a bit reflective. 🙂

daily affirmation 1     daily affirmation 2

Back to Nick’s world,  just what can I do to require more from him?  I was thumbing through some files in my organization frenzy recently.  I stumbled on a one called “Basic Functional Life Skills Curriculum.  I scrolled the list and noted that there many benchmarks he hasn’t met.  He still needs help to become more independent in the areas of grooming, dressing, chores, leisure, etc…..

Yes, he’s rocking my high heels while unloading the dishwasher……

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I have to remind myself to slow down. I need to let Nick try more of these things on his own with less guidance from me.  Take some advice from the guru:

ann landers

Having a child with Down syndrome and autism means a reliance on a caregiver at all times. I have come to accept this fact, but I am never giving up.

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I’m going to require more from myself to help Nick become the best he can be!  How about you, what are your dreams for 2014?   That’s what is in my noggin this week.


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.



Posted in Autism, Down syndrome, Government/Legal Matters Related to Special Needs

Blog #79~Reboot 2014

Blog #79~Reboot 2014

happy new year 2014

The New Year gives us a clean canvas to start over.  It’s an opportunity to paint a fresh picture.  The past year was full of many challenges and changes.  I am ready to re-boot and here’s why……

2013 started out good until Nick’s birthday in February.


The heater broke……. We had to bundle up for the celebration….. Here I am with Nick’s grandparents Jim and Theresa….. Brrrrrrrr  🙂

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The first task was to tackle the annual report for “Continuance of Guardianship” of Nick.  It’s a two page form along with a yearly expense report.  As long as you submit this a month before the hearing, there is a good chance it will be approved.  Then, you won’t have to appear in court before the judge.  So far so good…..but not so fast…….


I got a notice from the State Department of Illinois stating that Nick’s benefits would end on his 19th birthday.  I would have to switch over from the child waiver (94 case) and apply for an adult waiver (93 case).   Somehow the PAS agency that I work with failed to inform me ahead of time.  The application process was daunting and the paperwork alone practically killed a whole rain forest.  Nick’s funding was lost for several months which meant we had to pay his respite workers out of pocket.  It took awhile and a lot fumbling through the red tape but eventually the adult waiver was approved.

See Blog #44 located in March 2013 archives for more about this debacle.

red tape documents

During the course of doing all this, I applied for SSI for Nick.  SSI (Supplemental Security Income) is available for persons who have a disability.  Nick has Down syndrome and autism and certainly qualified for this aid.  The application procedure was straight forward, done online and much easier than the process for state funding.  Again, it took a few months and a scheduled phone interview before Nick was able to receive funding.  What I have learned through this past year is that you have to stay on top of things when you are managing an adult with special needs. It’s definitely more time consuming to handle his affairs now then when he was younger.

Early spring brought on several upgrades to the house including  a new roof and siding.  Then in April, the Chicagoland area experienced major flooding. The sump pump couldn’t keep up and the water poured over submerging the basement.


It took several months to get everything back in order. The garage and  dining room became the “catch all” in the meantime. One word…….. “Mayhem!”


In May, Nick graduated from high school, what a milestone for big guy!


During the summer the dry wall was restored, walls freshly painted and new carpeting installed in the basement. I was thankful for my in-laws, Jim and Theresa who helped out with putting things back on the walls, shelves and in the bar area. They were instrumental many times  helping out in 2013.

Vacation was spent in the Outer Banks, NC, it was just what we all needed.  Upon our return, Miss Mellie our beloved cat of 17 years was in poor health.  We had to say goodbye to her.

Rest in peace Miss Mellie……

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In the fall, Hank returned to Northern Illinois University and moved into an apartment.

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Nick started the post-secondary transition program called STEPS, which he will attend until he is 22.   During the fall, new carpet was installed in the rest of the house.  A fresh coat of paint was put on both the boy’s bedrooms. Twelve years and two boys, uh….. let’s just say they needed a complete overhaul!  Carpet installation is quite an ordeal. You have to pack everything up and clean out all the closets much like moving out of a house.

Fresh paint and carpet, sweet! Nick approves……

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Within a week after the carpet was put in, Al was scheduled for shoulder surgery.  40+ years of hard core tennis had taken a toll and the USTA Sectionals in August really did it in.  The surgery was lengthy and the recovery was painful. The worst is behind him; his arm is out of the sling with 6 months of rehab before he can pick up a tennis racket.


2013 was challenging, painful and filled with many changes.  The house is restored and things are nearly put back together.  I am ready to re-boot and greet the 2014 with a clean slate.  Mostly, I am looking forward to settling down, seeing what the new year will bring, and get back to writing about Nick’s world without interruptions.  That’s what is in my noggin this week.  🙂