Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #145~Hitting Milestones, Moving On

Blog #145~Hitting Milestones, Moving On


This weekend we had a big milestone.  Nick’s brother Hank, graduated from Northern Illinois University with a degree in Marketing and a minor in Communication.  Nick is 22 years old and has Down syndrome and autism.  He recently reached his own milestone, finishing up the Post-Secondary transition program.  Nick now attends an adult day program.  He has a full day with activities including on site activities, community trips, vocational jobs (recycling, cleaning both on site and at a local church), and working a food pantry).  He keeps busy and is very happy in this new program.


On the way to the NIU campus, we passed by his old high school. I pointed MVHS out to Nick and he instantly replied and signed, “All done”.  My niece, Anna, their Grandpa Jim, and I were astonished.  Nick recognized that he had been there, done that and had moved on.

Nick at MVHS graduation a few years ago, held at NIU Convocation Center…


The mood in the NIU Convocation Center was festive.  Nick swayed back and forth in his seat to the music of the steel drum band jamming in the background. I’ve never heard the Pomp and Circumstance played quite like this.  Instead of getting teary eyed as I normally would, it felt more like a delightful celebration.

NIU Steel  Drum Band=Awesome!


Nick was very patient and kept quiet through all the speeches.  It was a lovely day, and a proud moment for the whole family. Nick’s Dad was full of pride, as he is an alum of NIU and also a marketing major.


Nick looks like he is eyeing an alarm in this picture, doesn’t he?  He didn’t pull one on graduation day (whew)!  But, he did get another last Friday at his adult day program site.


Current count=36 fire alarm pulls.

At last, both of my sons are done with school and moving onto their adult lives.  My wish is for Hank and Nick is for them to feel productive, contribute to society, and be happy in all they do.  I am very proud of my guys.  It was a good day at sea.  That’s what’s in my noggin this week.


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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.

photo (122)

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……

IMG01 (2)

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.  🙂


Posted in Autism, Down syndrome

Blog #76~Social Skills and Autism

Blog #76~ Social Skills and Autism

A few weeks ago I did a guest lecture at Northern Illinois University. The graduate level class topic was “Functional Communication Skills and Social Skills” from a parent perspective.

NIU at  WCC Sugar Grove Campus

Bodie Hall Waubonsee Community College
Blog #73 covered the topic of communication skills as it relates to autism. This week I will cover how to incorporate social skills for individuals with autism. Nick has Down syndrome and autism. It makes for an interesting mix because his verbal speech is lacking, yet he is very outgoing.

Here some of the ways in which his teachers have incorporated opportunities to practice social skills:

*Lunch bunch groups in school-play board games, practice turn taking, boundaries.

*Community outings to grocery store, library, mall, and eating out.

*School and community jobs

*Practice self-regulation through his behavior plan. Work in a controlled setting on  what triggers his outbursts.

*Social Groups tailored for kids/teens with autism

*Best Buddies Program- monthly meetings, parties, bowling, movies, dances, etc…

Nick trying a hat at Jewel Osco Grocery Store 🙂 ………..

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All of these opportunities have helped Nick to behave more appropriately when out in the public. When Nick was in middle school he went to each classroom and emptied the recycling bins. He was able to practice greeting students. At the end of the semester, the students made thank you card for Nick: IMG01

Having peer role models is very valuable in this process. At his recent school conference his teacher commented that Nick was quite “restaurant savvy.”

Nick’s all aboard for lunch with his classmates 🙂

All Aboard Diner 4-23-10 006

Children and teens with autism can benefit in participating in social skills groups. These groups have not been a fit for Nick because he lacks the verbal skills. They tend to be suited for higher functioning persons with autism who have speech. Check with community autism support groups, speech therapy clinics and schools to find a one in your area.

Here is a sampling of topics that might be covered in a social group for individuals with autism:

*Interventions for hitting/biting and conflict resolution

*Handling transitions

*Asking friends to play and what to do if they don’t want to play with you.

*Turn taking in general conversation.

*Facilitating cooperative play- taking turns, practicing patience coping with losing a game

*Dealing with large crowds, busy settings and stimulus overload.

*Initiating a variety of conversational topics – Sometimes intense, restricted interests result in sticking with only their preferred topics (like dinosaurs, academy award winning movies, etc..)

*Working on conversations that reciprocate the interests of others in the group.

*Providing needed information based on a partner’s knowledge of the topic – Gauging length of conversational turn and working on noticing the cues others send us so we can adjust the length of our conversational turn.

Currently, Nick participates in the post-secondary transition program. His schedule  includes community trips to the store, library, mall walking, cooking, vocational jobs and move and groove (dance party) along with the regular curriculum. The STEPS program also has dances and recreational trips after school from time to time. As you can see, there are  many occasions built in his schedule to practice social skills. It is essential to keep Nick’s world open and provide opportunities to socialize.

This past weekend his brother came home from college. I found it touching that Nick wanted to hang out upstairs in Hank’s room a lot of the time he was here.

Nick with his brother a few years back…..


Having a child with autism doesn’t mean you have to close yourself off to the world. Look for ways to get out there and mingle. That’s what is in my noggin this week! 🙂

Posted in Education and Special Needs, Fun Side of Nick

Blog #56~ Cap and Gown…. or just gown?

Blog #56~ Cap and Gown…. or just gown?

I unfurled the gown and hung it up so the crease marks would begin to loosen.  While the iron warm up I took a look at the cap and tassel and put it on my head.

“Hmmmmmm, ten bucks that’s not going to stay on Nick’s head.”

If you think about it the graduation cap is a silly looking thing.  You try to walk and the tassel is bouncing around, dangling in your face.  The hat never sits firmly on your head.  Who came up with such a dumb looking cap for such a scholarly milestone?  Here are a few facts I pulled off of Wikipedia about the cap and gown:

cap and gown

 Graduation portrait of Linus Pauling wearing a mortarboard, 1922

“The square academic cap, graduate cap, or mortarboard] (because of its similarity in appearance to the hawk used by bricklayers to hold mortar) or Oxford cap, is an item of academic head dress consisting of a horizontal square board fixed upon a skull-cap, with a tassel attached to the center. In the UK and the US, it is commonly referred to the mortarboard is generally believed by scholars to have developed from the biretta, a similar-looking hat worn by Roman Catholic clergy. The biretta itself may have been a development of the Roman pileus quadratus, a type of skullcap with superposed square and tump.”

I wasn’t sure what moment the tissues would be needed that day.  It happened when I got down the stairs holding the freshly pressed gown.  I saw the family gathered in the living room then it hit me. Gulp, eyes welled up with tears.  So much had happened in the last 19 years to get Nick to this day.

photo (116)

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Armed with an icon strip I made early that morning, we dropped Nick off with Miss R, his teacher.

photo (115)

We waited anxiously for the moment when Nick would be walking in with his senior class.  The processional-*Pomp and Circumstance always gets to me. It’s a powerful song that never ceases to put a lump in my throat, symbolizing pride and valor and victory.  We waited as the classmates fill in the rows of chairs, knowing that with our last name it would be awhile.  Then he appeared…….Big guy Nick!

IMG-20130526-00100 (2)

The first thing I noticed was that he wasn’t wearing his cap….. shocker, right 🙂  He followed the line compliantly with his bare head and distinctive double cowlicks.  I couldn’t help but see how much shorter he stood next to his peers.  At least we could spot him easily amongst the 600+ students.


I guess we didn’t need to waste that Google search on whether the tassel is worn on the left or right side. 🙂 


The senior reflection address given by the Salutatorian made mention of one thing that caught our attention.  “Metea Valley Class of 2013, we have been pioneers for the last four years.  Together we have survived the ACT’s and the winter fire drills of 2009….”  Looks like Nick indirectly got a shout out. 🙂


Considering the size of his class, the ceremony moved swiftly as the roll came from two sides in rapid fire. Nick made his way up to the podium to accept his diploma.  So far so good!  Wait, not so fast……plop there goes the diploma.  The person presenting the diploma picked it up and handed it back to Nick who proceeded to drop it a second time.  Then, as Nick reached the stairs at the end of the stage, he tossed it to the floor.  By now there was a log jam of students lining up behind him trying to get back to their row of seats.  Well, at least he sat quietly and was appropriate through the rest of the ceremony.  Plus, we dodged the DeKalb Fire Department getting called to the scene. All in all, it was a grand day full of family, love, laughter and wait for it…….

You guessed it, chocolate cake!

photo (121)

It was a blessing to have my family in from Texas.  Thanks to Babs, my mom, Laura, Scott, Jenna and Jake for making the trek up.  Al’s parents Jim and Theresa were also a part of the celebration.  Milestones such as graduations much like birthdays are benchmarks to pause and look back at the life we have lived.  If you haven’t read Blog #41~Back to the Future, located in the February 2013 archives I would highly recommend you doing so (don’t forget to grab the tissues.)  Having a child who has Down syndrome and autism has been full of challenges.  His obstacles have been enormous.  Hundreds of hours of physical, occupational and speech therapy, 17 IEP meetings along with blood sweat and tears have molded Nick into the young man that he was meant to be.


It’s been one heck of a ride, and I couldn’t be more proud of Big Guy!  That’s what is in my noggin this week. 🙂


*”Pomp and Circumstance” was composed by Sir Edward Elgar (b. 6/2/1857 d. 2/26/1934). “Pomp and Circumstance” was first performed on October 19, 1901 in Liverpool, England. As the students commence onto the stage they are handed their diplomas and given a handshake. It is at that point the students flip the tassels on their hats.

Posted in Education and Special Needs

Memorial Day Holiday Break

Memorial Day Holiday Break

We are having a great time this weekend with my family (Babs-my mom, Laura-Sis and her husband Scott along with my nephew Jake and Jenna my niece.) Lots of laughs, fake sneezes, whoopee cushion fart humor, elbows rubs and fun. 🙂 Al’s parents (Jim and Theresa) also joined us to celebrate Nick’s graduation from high school held at the Northern Illinois University Convocation Center.

NIU Home of the Huskies!

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Burning questions dear readers???????

*Did Nick pull a fire alarm at the graduation?


*Was there any hand flapping as he made his way across the stage?

hand flap

*Did that cap and tassel stay on his head? 🙂

*Just what did happened after Nick was handed his diploma?

Tune in next Monday to find out! Blessing to our troops and veterans today.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Tech Stuff/Apps and Video Based Instruction

Blog #52~ Tech Time

geek pic

Blog #52~Tech Time

A few weeks ago at the National Association for Down Syndrome (NADS) Retreat the guest speaker did a presentation on using video based instruction and mobile technologies to support learners with Down syndrome and other developmental disabilities.  Toni Van Laarhoven, an associate professor in the Department of Special and Early Education at Northern Illinois University (NIU) gave us some great information on how to implement it.

Video modeling for can be used for teaching a variety of social, academic, and functional skills.  In the April 2012 archives, Blog #5~Ready, Set, Action, I wrote about how effective these have been in teaching Nick a variety of job skills.  He learned how to unload the dishwasher, load the washing machine and how to use the vacuum cleaner.

Nick vacumming_Tabor Hills (5)

Before video modeling we used social stories.  Basically this is like a script that you want the child to follow.  With Nick also having autism, it helps him to see it in picture form so he can better understand.  Nick has a thing for sneezing right in your face on purpose.  His teacher made this social story, here is part of it…….. aaaaachoooooo 🙂

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These visual supports were effective, but his interest level when reading social stories was nothing compared to when he started watching the video models.

Here are a few ideas  I came up with for video modeling:

Teach a job skill

Teach a fine motor skill (cutting food, buttoning a shirt, pour milk, handwriting)

Teach a gross motor skill (swimming strokes, riding a bike, yoga positions.)

Grooming routines (brushing teeth, washing face, dressing.)

Bedtime routine

Change in routine (picture day at school, new curriculum unit in P.E., new school)

Visit to doctor, dentist, blood draws, and haircuts

Trip to the zoo, baseball game, mall, movie theater

Appropriate leisure activities to do at home (watch a movie, computer/X-Box)

Teach social skills (playing games with peers, turn taking)

It’s best to choose one behavior or skill to work on at a time.  Have the child watch the movie before engaging in the activity on a consistent basis.  For a job skill, many students have a video on their hand held device (iPod) and can follow the prompts as they work.  Ultimately, using video models can foster greater independence.

Shooting the videos can be done using an adult or peer model going through the sequence.  Simple verbal prompts should be provided.  For example, for pouring milk you can script it like this.

  1. Go to cabinet and get a cup.
  2. Go to the refrigerator and get milk.
  3. Open cap and pour milk in cup.
  4. Put cap on milk.
  5. Put milk container back in the refrigerator.

Another way to use video modeling is to make a video resume.  Toni made one of her sister who has significant disabilities.  This video showed in detail her routine.  The narrator pointed out specific details, likes, dislikes that added clarity to how she navigates her day.  This would be extremely helpful for a new staff, teacher, and direct care provider.  A few years ago, Toni’s NIU students put together a video resume of Nick called Project MY VOICE.  Like Toni’s sister, his showed what he did at school, his likes (music, community outings, etc..) and pointed out things that might upset him (saying “no” to him, changes in schedule, etc…)  Nick was very proud to show the video at his IEP meeting that year. 🙂

There tons of programs and apps that are available for assisting persons with special needs.  Here are just a few that have been recommended to me:

*Follow a schedule with Picture Scheduler:

picture schedule app

*iPrompts- Visual support, schedules, picture prompting for autism and special education.

*Artiks Pics-Vocabulary flashcards, memory games


*First Then Visual Schedule:

first then app

*ABA (Applied Behavior Analysis) and educational apps:

fruit app

happy sad app pic

Alphabet Tracing:

alphabet tracing

Sensory Fun, Light Box App:

light box app

Silly Fun, Talking Tom 2 (Nick’s going to love this one. Tom just cut one here, stinky) 🙂

talking tom

The list goes on and on, you get the idea.  There’s an app for just about everything.

Video based instruction, using mobile devices and prompting systems are effective tools in helping our kids navigate their world to become more independent. Put the power in their hands! That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Feeding, Personal Hygiene, Toileting

Blog #51~Pushing My Buttons

Blog #51~Pushing My Buttons

Pushing the microwave and phone intercom buttons, running water faucets full blast, dumping out coffee mugs…. You name it Nick does it. I try to ignore the behavior and not give him any attention which is what he desires.  This tactic isn’t really working.  Now what?  Enter Toni Van Laarhoven, Associate Professor at Northern Illinois University.  She spoke at the NADS Behavior Retreat a few weekends ago.  Before she did her presentation on using video modeling to teach behaviors she spent some time talking about the struggles that we as parents were going through. The NADS (National Down Syndrome Association) retreat families all have children with Down syndrome and autism.  I sat up in my chair, she had my full attention. I began jotting notes in my journal frantically as she spoke.  I am always looking for solutions, she had me at DRO.  

It’s been a long time since my days of taking psychology classes at The University of Texas.

Longhorn logo

I remember the basics but this technique I have never tried with Nick.  What is DRO?  It stands for Differential Reinforcement of Other Behavior, and it is the delivery of reinforcement. This reinforcement procedure is designed to reduce a given behavior by increasing alternative behavior while withholding reinforcement for the unwanted response.

 I did a little research and have to give credit to Toni Van Laarhoven and these two resources: 

Cooper, J.O., Heron, T.E., & Heward, W.L. (2007). Applied Behavior Analysis (Second Edition). Upper Saddle River, NJ: Pearson Education, Inc.

Sulzer-Azaroff, B. & Mayer G.R. (1991). Behavior Analysis for Lasting Change. Belmont, CA: Wadsworth/Thomson

Here is my take on this technique and how I might apply it to help with some of Nick’s behaviors.  DRO is a specific schedule of reinforcement that is used to decrease the rate of behaviors that are inappropriate.  It is time-dependent, so rather than responding to a behavior after the fact you reinforce the time that the child is NOT engaging in the inappropriate behavior. In essence, you catch them being good. 🙂

angel pic

Advantages of using DRO: 

* Decreases inappropriate behaviors rapidly

* Positive approach to change inappropriate behaviors

* Used to reduce a wide variety of behaviors

* Easy to implement

Guidelines for implementing a DRO Program: 

* Define the target behavior.

* Determine highly preferred items or activities to be used as reinforcement.

* Collect baseline data of current behavior, how often does this occur?

* Set initial DRO intervals just below the average period of time that the child  emits the inappropriate behavior. (5, 10, 15 minutes?)

* Explain rules to earn reinforcement.  Child will earn reinforcement if they do not engage in the target behavior during each interval.

*DRO may be more effective when combined reinforcing replacement behaviors.

*Use visual supports (tokens, picture of reward)

*At the end of the time period, provide the child with the reward if the target  behavior was not emitted.

* If the child engages in the target behavior, inform them that there will be no reward at that time.

* Start time period and continue sequence above.

*Implement daily and consistently.

* As the student makes progress, increase the time period.

Here is what I picture with Nick.  The target behavior will be pushing the phone intercom button.  I will do some data keeping on how often he does this.  In addition, I will see what is occurring in the environment that might trigger him doing this and make a note in the behavior journal.  Once a pattern is established I will set the interval schedule.  Next will be determining what motivates Nick.  Normally he is rewarded with a Sprite when he does his work bins well.  However I am going to use a different reward specific to this DRO project.  Nick enjoys watching Funny Cats on You Tube and the laptop is right by the phone.  Right now I am thinking this might work.  I like the idea of doing a visual token system for Nick.  Toni mentioned making a puzzle of the highly preferred item.  For each successful interval you put a piece in the puzzle.  Once the puzzle is filled in then Nick would get his reward  🙂

you tube cat pic

The DRO technique could be used in home and in the classroom as well.  One instance might be a child who interrupts the teacher during classroom instruction. The end result is to have the child learn to exercise more self control.  This may sound like a lot of work.  The data keeping and setting of the interval schedule can be tedious.  Flashback to the toilet training days….. this is when I use to put Nick on the throne every 30 minutes and do a dry pants check.  I also kept data on how often he took in food and drinks. Over time I saw a pattern of two things.  First,  was how long he could stay dry and clean.  Secondly I figured out what amount of time it took him to digest what he ate and drank thus needing to use the bathroom. This is how I habit trained him.  As he matured he was able to self-monitor toileting on his own. Put the time and effort on the front end (so to speak 😉 ) and there will be a payoff.  That’s what is in my noggin this week….. Stay tuned…..

~Teresa 🙂

Posted in Autism, Behavior/ ABA

Blog #50~Up, Down and Somewhere in Between

Blog #50~ Up, Down and Somewhere in Between

Life has its ups and downs like a roller coaster. The highs from a peak adrenaline rush don’t last forever. What goes up must come down. Then there are those periods of in between. Over the weekend we attended the National Down Syndrome Association (NADS) Behavior Retreat. This is unique group of kindred spirits all which have children with Down syndrome and autism. This support group always divulges uncanny stories that are frighteningly similar. Some are on a high, others are on a low and a few are somewhere in between.

The retreat opens with sharing of stories. The first was a success story of a boy the same age as Nick. He is navigating his schedule independently using his iPad and a scheduler app. The next mom had poured out tears last year. At that time her son plopped down outside in a busy parking lot. She physically couldn’t get him to move. We call that the “stop, drop and plop.” This year she said they were in a honeymoon period experiencing much success and growth with their son. Another parent was struggling with many things. Her son was now a one man wrecking crew. He’s on a dumping rampage like Nick.  The only pictures she had were up on the high shelves in her home.  He found a way to hurl objects way up on the shelves and successfully knock down the last remaining picture frames. Why? He likes to stare into the frame because it’s reflective. His sensory need was desperately craving shiny objects. Crafty little guy. 😉

Nick likes reflective objects too…..

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The gal next to me was on a high. She had grasped the Holy Grail. Her child was finally potty trained. The group broke out clapping and cheering. This is no easy feat with our kids. Al and I spoke next. Right now we are somewhere in between. Nothing horrible is going on with Nick. Yes, he is still pushing the microwave and phone intercom buttons. The water faucets  run full blast from time to time. He’s still dumping and dropping things. On the flip side, his meltdowns have been minimal and he hasn’t pulled a fire alarm in a while.

Nick’s last alarm pull was at this retreat six months ago, that was #27….

While these things are bad, I don’t see it as unmanageable right now. I know what rock bottom looks like. We hit it hard while he was going through puberty. This ride is wild and often met by hitting a breaking point. We came close. Over the years during these retreats, some families had to come to the realization that the support at home just wasn’t enough. You can see the pain in their eyes. You can tell by the body language as they sit with their arms crossed wound up tight as a ball of yarn. You can feel it as they speak of their hopelessness and guilt with tears flooding their down their faces.

At some point we as parents have to make the difficult decision to put our kids into a group home. Over the years many families expressed their relief of having done so and reported that their child not only adjusted but thrived. It’s a personal decision. I am guessing that when the time and situation is right, you will know it.

Listening to all the stories got me thinking that it’s like that Seinfeld episode with the coffee table book….

Seinfeld coffee table book
George who had no job and living with his parents adopts a new mantra, to do everything the exact opposite. Elaine is up, landing the job at Pendant Publishing but then things come crashing down. Damn those Jujyfruits. 😉

Seinfeld Jujyfruits
Meanwhile, Jerry loses a stand-up gig and five minutes later is asked to perform another one on the same night. This prompts Kramer to call him “*Even-Steven”. This causes Jerry to start noticing how everything always ends up turning out exactly the same for him as originally planned, never losing or gaining. By the end of the episode, Elaine claims that she has “become George,” but Jerry marvels at how things always even out for him: first, Elaine was up and George was down; now, George is up and Elaine is down, but Jerry’s life is exactly the same.

Seinfeld cast
Besides the successes and war stories, the retreat offered some great information. Toni Van Laarhoven, an Associate Professor from Northern Illinois University gave  a fantastic presentation. We learned about using video modeling to teach new skills and behaviors. I can testify this works. Check the April 2012 archives for my story on this in Blog#5~ Ready, Set, Action. Toni also provided some helpful information regarding behavior problems. Stay tuned for more on this in the next two weeks.

In life sometimes you are up, other times down, and sometimes in between. I am okay with being “Jerry” right now. I’ll take even-steven. I think TODAY, most of us would.
tax day
That’s what is in my noggin this week and don’t forget to ask for those tax day specials! AMC (free popcorn), Sonic, Arby’s, Cinnabon and many other businesses are offering some sweet deals today. 🙂

*even- steven: According to it means exactly equal; also, with nothing due or owed on either side. For example, I’ve paid it all back, so now we’re even-steven. This rhyming phrase is used as an intensive for even. Random states that the noun steuen/steven originally meant ‘a time or place’, but later took on the meaning of ‘a condition, situation, or circumstance’. So the phrases set steven and even-steven both meant ‘settled circumstances; settled accounts’.

Posted in Autism, Down syndrome, Fun Side of Nick

Blog # 9~ Brotherly Love

Nick’s final exam schedule came home in the back pack last week.  I showed it to his brother, Hank who had just finished with his finals at NIU.  We both had a good laugh.

“Mom, remember my junior year of high school and those finals I had? They were a bitch!”

“How can I forget?  That one day you had a final in Trig and English.  Nick had the Blueberry Hill breakfast final.”

“Yea then the next day, it was Genetics and History and Nick’s was like Naperville River walk and shopping.  That was so pathetic!”

Each day that week, Nick got off so easy compared to Hank.  The rivalry of brothers extends past the boundaries of normally developed children.  So this week is all about brotherly love.  One question I am often asked is what the relationship is like between the two.  Rather than try to answer this I decided to go to the source, Hank.  Here is his perspective on the relationship with his younger brother.  Hank is going to be a sophomore at Northern Illinois University (NIU) and will be turning 20 next month.  The boys are 19 months apart in age.

My Brother Nick, By Hank Unnerstall:

“My brother Nick is not like any ordinary brother. There is an extra chromosome in the 21st pair which is the result of Nick having Down syndrome and later, an autism diagnosis that separates him from normal people. Having Nick as a brother has made me open my eyes to life in general and the traits that make me the man I am today.

Some of the earliest memories with Nick start from when I was around 5 years old. Being that young I did not fully understand why my brother was different but I accepted it because he is my brother.  I remember when I began getting older and going to elementary school when my mom and brother would pick me up and drop me off at school. Nick would be doing his normal sound making and hand clapping in public that would sometimes embarrass me in front of my peers. I also recall the times at the old California house we had where Nick and I would start messing around and wrestling with each other but then Nick would take it seriously and start pinching me. His ways of fighting back around that time were much less harmful than it is now when he has one of his meltdowns or I like to call them “monkey boy” episodes. These memories are some examples of tough things in which I have had to deal with in which growing up with my brother.

Hank and Nick at San Francisco Bay….

It would be remiss of me if I didn’t mention a horribly embarrassing time.   Back around my freshman year of high school, Nick and his respite worker and I all went to Arby’s for a late lunch. Once we got our food we sat down, Nick started to make loud and disgruntled sounds when we put his food in front of him. I told him to be quiet in a not so nice tone. Next thing you know he became furious and proceeded to throw his food and random objects like trays, sugar packets and salt shakers all over the place.  We tried to calm him down but he was at the point of no return (aka monkey boy.)   I went on to restrain him and he was pinching, kicking and biting, anything to hurt me.  Somehow we ended wrestling around on the ground and to the other people in the restaurant it must have looked like we were fighting.  This was awkward and embarrassing for me because I was much bigger than him.  I knew it didn’t look right. I just wanted to leave and never show my face again.

That was the worst, or well at least one of them!

 But, there are many traits to Nick.   For example, he is usually a very happy and silly kid who always has a grin on his face. That’s why people love him at school and of course our family despite what we deal with when relating to Nick. Also, even though Nick has autism it does not stop him from being a socially engaging little dude even though he can’t speak. He loves to get attention whether it is him trying to act cute or to negatively do something to get ours. For example if we do not pay Nick any attention for a while he might spray shaving cream over the stairs.

Some of the best memories I can recall having with my brother can be the times where he will just sit next to me on the couch and watch TV with me and just chill out. Also I love to see him dance intensely while listening to the music that I provide him which is usually hip-hop/rap. Basically whenever Nick is in a good mood and happy he always knows how to put a smile on myself and many others faces. Having Nick as a brother has taught me to be a very patient person. I think I got this trait from the numerous times I have had to babysit Nick throughout the years. Also I feel that I have a certain outlook on life after growing up with Nick. For instance, Nick is always happy about the smallest things and he’s the one who is mentally disabled. So how I’ve been trying to live my life is to the fullest and I’m always trying to be as positive as possible no matter what life throws at me.”

Hank and Nick at the Sox game this past weekend……

Oh how they have grown up since the days of past when they use to play sweetly on the living room floor.

My Dad always said they looked like innocent cubs wrestling on the ground… more…. 😉


Those peaceful days long faded as Nick became more frustrated… way to huge meltdowns as he became older.  I applaud Hank putting up with the challenging behaviors of having a brother with not only Down syndrome but also autism.   We did our best to provide support by taking him to sibling workshops along with having him read “The Sibling Slam Book” by Don Meyer.  This is an excellent resource of what it is REALLY like to have a brother or sister with special needs.  We carved out time to just spend with Hank (buddy days) so he wouldn’t feel like Nick, Down syndrome and later autism didn’t consume our family.  I am very proud of Hank and his relationship with his brother.

It has been a crazy, twisted road we have been on but let me just say this….While the sibling relationship takes on a different form with a special needs child, there is no doubt that the bond is there.  I wish that Hank and Nick could have conversations, play video games and throw a baseball like most brothers do.  But that was not meant to be. One thing for certain is that there is a connectedness and love between them.  Last fall Hank took off for NIU. How did I know that Nick missed him?  He walked around with this picture in his hands, never letting it go even as he used the bathroom 🙂

Brotherly love is evident.  That is what is in my noggin this week.  Until next Monday, may your short week be full of love and connections spoken or unspoken.


***Special thanks to my son, Hank my guest blogger extraordinaire 🙂


Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #5 Ready, Set, Action!

“Wash… wash…wash,” I hesitated going into the other room in fear of what Nick might be doing.  Would it be my fitness shoes in the sink under the faucets running full blast yet again?  To my surprise, I went into the laundry room to witness him taking the dirty clothes off floor and one by one plunking them into the washing machine and with each one saying the word wash!  It hasn’t just been the laundry either. For the past year, he has step up in other household chores.  Trying to get his brother, Hank to unload the dishwasher was like trying to pull teeth.  But Nick completely enjoys his role that he took over since his brother left for college last fall.  Everything has its place and his careful eye has taken note over the years.  He proudly puts every cup, plate, pot and pan along with the stemware carefully in the cupboards.

A few months ago I packed away the last of the Christmas ornaments and decorations and pulled out the vacuum to clean up all of the needles that had fallen on the carpet. I plugged the cord in and turned around to see Nick with his hand on the handle.  He was ready to take it on!  Much to my surprise, he not only navigated it but held the cord appropriately off to the side and did a nice job running the vacuum across the carpet.  I knew he was doing this for his school job at the elder care home but had no idea how well he was performing.

I have to give all of the credit to the staff at his high school.  Mrs. W brought in Northern Illinois University (NIU) to do a study that was done on six of her students last year.  The abstract was about maintaining vocational skills of individuals with autism and developmental disabilities through video modeling.  Research has shown that using video modeling helps to promote independent work-related behaviors and decrease the reliance on staff.  Video based supports often result in fostering independence and generalization of job related skills.  This means there is less reliance on job coaches and co-workers all for which are critical for sustaining competitive employment.  It is like a script in that breaks down the tasks that need to be performed.  These short videos are narrated in the background with short verbal prompts.  Nick watched them every day for two weeks and then each time before he was to perform a particular task. In the case of the NIU study the videos were for loading the dishwasher and washing machine.  What I noticed immediately is that Nick enjoyed watching them over and over again.  They are much more effective than any task strip that he has always used in the past. Here is an example of a task strip:

For me the proof is in the pudding*.  I noticed a significant increase in Nick initiative and accuracy in helping out around the house.  The videos did in fact increase his generalization to doing other chores besides these two.

While the jobs are pretty basic for most people, for Nick they mark a milestone.  His goals are no longer academic in nature for the most part they are all functional.  Functional goals are non-academic and generally understood to refer to skills used in the context of routine activities and daily living. Anything he can do independently gives him not only a better chance at getting a job upon graduation but also a placement into a group home someday.   Right now, he also has many other jobs at school including shredding, washing windows, loading the dishwasher, recycling and washing clothes for the PE department.  This week we have his annual IEP meeting to discuss his progress and goals for his senior year of high school.  As I look back it is amazing to see the progress he has made given his disabilities.  At this rate, I am going to be able to give him the reigns around the house while I sit back on the couch, prop my feet up and eat bon bons!  That is what’s in my noggin this week.

*Origin of Proof is in the Pudding

Proof in this case means “ultimate test.” To “prove” used to mean to test, a meaning which survives in a limited number of usages. This is one: it literally means you can show me a wonderful recipe, and tell me about your fine ingredients, but ultimately, the test is in the thing itself, the actual results.