April 2013 – Down Syndrome with a Slice of Autism

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

Blog #52~ Tech Time

Posted on April 29, 2013October 3, 2013 by Teresa Unnerstall

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.

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 🙂

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.

Go to cabinet and get a cup.
Go to the refrigerator and get milk.
Open cap and pour milk in cup.
Put cap on milk.
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:

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

*Artiks Pics-Vocabulary flashcards, memory games

*www.autismspeaks.org/autism-apps

*First Then Visual Schedule:

*ABA (Applied Behavior Analysis) and educational apps:

Alphabet Tracing:

Sensory Fun, Light Box App:

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

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 🙂

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

Blog #51~Pushing My Buttons

Posted on April 22, 2013October 3, 2013 by Teresa Unnerstall

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.

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. 🙂

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 🙂

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 🙂

Autism, Behavior/ ABA

Blog #50~Up, Down and Somewhere in Between

Posted on April 15, 2013October 3, 2013 by Teresa Unnerstall

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…..

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….

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. 😉

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.

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.

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. 🙂

~Teresa
*even- steven: According to Dictionary.com 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 house.com 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’.

Autism, Behavior/ ABA, Education and Special Needs

Blog #49~April is what?

Posted on April 8, 2013April 4, 2016 by Teresa Unnerstall

Blog # 49~April is what?

April 2^nd was “Autism Awareness Day.” Nick and I didn’t wear blue to show support or acceptance. Quite frankly, I forgot. I am down in the trenches trying to keep him from running the faucets full blast, pushing the popcorn button on the microwave and dumping out my cup of coffee all over the floor every single day. Seems to me they should have kicked it off on April fool’s Day. 🙂

April and autism awareness…..

I applaud these gestures. In the October archives (Blog #26~Down syndrome Awareness Month), I posted some pictures of iconic places lit up pink in support of breast cancer and shared some ways to support Down syndrome which is also during that month.

Here are a few light it up blue pictures…..

Chicago lights it up blue…..

The CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD), and a study released just last week suggests that number may be even higher. In the Medical Daily article it stated: “A recent government survey as report of more than 95,000 parents in U.S. exceeds previously recorded accounts. Now 1 in 50 schoolchildren between the ages of 6 and 17 are diagnosed with autism. The CDC found that boys are four times likely to have autism than girls which has remained true since it was first discovered.”

An epidemic………

Personally I would like to see the focus on more educational, behavioral supports and other treatment options. What is going to happen to our kids when they age out of the school system? There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population. In addition, I’d like there to be an easier path to obtain funding through the government.

I have spent the last year writing about Nick in this blog so that you can better understand the way he functions having Down syndrome and autism. I have crawled through the gutter like so many other parents. What I think we all want most is support. We also need understanding and compassion without judgment. That along with a night of uninterrupted sleep. 🙂

Yes my child is loud, try living with it 24/7…..

Yup…….

No, I didn’t change the light bulbs to blue on the porch or add lawn decorations like this person…..

I didn’t go out and get a *puzzle piece manicure. It wouldn’t last anyway with all the cleaning up of stuff Nick has dumped out… April archives, Blog #3~ Getting your Goat for the full list.

But I do have a salon appointment to cover the grays Nick has put in my hair this Friday. 🙂 That’s what is in my noggin this week. I will leave the lighting up campaign for everyone else and Nick with his flashing blue stim toy and blue water bottle… while I try to keep up in his world.

Seeing the world in blue, cool ……

~Teresa

*The puzzle pieces are used to reflect the mystery and complexity of Autism Spectrum Disorder (ASD.) It’s a puzzle that has yet to be solved.

Autism, Down syndrome

Blog #48~Joy and Sorrow

Posted on April 1, 2013April 1, 2013 by Teresa Unnerstall

Blog #48~Joy and Sorrow

Yesterday during the homily at mass the message began with the feeling of true sadness for those who witnessed Jesus dying on the cross. Then just imagine days later what it must have felt like to see the rock pushed way from the tomb and find it empty. But then Jesus reveals himself as having risen and bringing the great message of eternal life. What an array of emotions. The depth in which we experience a range of feelings can be overwhelming. The homily message was this….. Life is like that with the ebb and flow of joy and sorrow.

Rewind 19 years ago to the moment Nick was born. “It’s a boy! Does he have all his fingers and toes?” He did and he was beautiful. He was smaller than his brother and his hair was lighter. He was perfect. 🙂 We were elated! Within ten minutes, they whisked him out of the room for further examination. He was having breathing difficulties. The room became silent.

Like a light switch the emotions flipped from joy to fear. Time ticked away as I sat there deserted waiting to find out if my baby was okay. Cold and alone under a bare sheet and thin blanket, I braced myself. It seemed like forever until the doctors came back with Al. Fear was replaced by sorrow. I saw it all over their faces. I could tell the news was not going to be good. Two words: Down syndrome. These two words would change our lives forever.

I never saw Down syndrome as the end of the world. After a week in ICU, the breathing tube and monitors were unplugged and we were able to bring him home. It was more like entering a different world. Emily Pearl Kingsley wrote this poem about her experience. She has a son who has Down syndrome.

“Welcome to Holland”
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. – Emily Pearl Kingsley

Baby Nick sleeps contently after his christening. See how baggy his white jumper looks with his low muscle tone………

Our trip to Holland, while unexpected was filled with joy and sprinkled with sorrow. There were twinges of jealousy on occasion wishing my child could do the normal things that most children naturally did. But what was much more devastating was the second diagnosis of autism. The trip to Holland took a bad turn to what resembled Siberia. This change in flight plans changed the game entirely. For me, this is when sorrow took over. This new world felt isolated. My son didn’t fit in with the Down syndrome support group anymore. The autism groups all seem to have children who were higher functioning both academically and stronger verbal skills. I felt lost and found myself pulling inward.

Eventually, I plucked myself up, got out of the funk and sought support. Little Friends Center for Autism helped me educate myself and offered trainings to help my son navigate his world better. The National Association for Down Syndrome (NADS) offered a retreat for families with a dual diagnosis. This is where we found parents who “got it.” We all shared similar stories. Some which we dared not to tell anyone else before as it would be too shocking. We laughed and cried as we commiserated. We found a new home.

Right now the days are filled with more joy than sorrow. But like all of us there are times where I feel overwhelmed and sad. I try to remember what saved me. Stay plugged in and ask for help. Always keep the faith that there will be better days ahead. That’s what is in my noggin this week.

~Teresa

This smile brings me great joy…….. 🙂

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