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.

~Teresa

🙂 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) 🙂

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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, 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. 🙂

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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 🙂