New monitoring system gives adults with disabilities a new look at independent living

 With all the new advances in technology some adults with disabilities are finding new ways to put them to use enabling them to gain independence and   begin living on their own. A new article details life outside of assisted living and group homes to a new 24-hour monitored independent-living housing situation. A new system called Sengistics is able to monitor programmed activities of a household 24 hours a day. For example things like doors and windows opening after specifically programmed hours can trigger a phone call to a caretaker allowing the caretaker to check-in with the individual moments later. Other features that can be programmed include motion sensors for areas of the house alerting caretakers of possible injuries and accidents, alert systems for appliances to make sure they are secured properly after use, alerts for medications ensuring they are taken on the correct schedule as well as a variety of other individualized monitors that can be programmed to call and notify different contacts.

This type of living situation is ideal for those who cannot live in a fully independent housing situation but who are generally over-served in assisted living homes. It also fosters the use of previously learned living skills as well as helps by giving the individual the opportunity to acquire new sets of skills ranging from simple chores to shopping lists, money management and more. Lastly, for parents with adult children who continually need support and are unable to live fully independent lives this new type of housing situations enables them to gain a piece of mind about the future.

To learn more about the monitoring system and its features click on the following article:

High-Tech Monitoring

Simplifying the Science: Parent-Conducted Toilet Training for Kids with Autism

For many of the families I work with, toilet training their child with autism becomes a long, painful process. I typically recommend the Rapid Toilet Training (RTT) protocol developed by Azrin & Foxx (1971) but many parents struggle to maintain implementation without the presence of a behavior therapist or toilet training specialist. And while Azrin & Foxx’s results have been replicated in other studies, RTT has primarily been used in educational and outpatient settings, and the amount of time it has taken to complete toilet training has been longer than in the initial study.

This is why I was especially excited to come across the study by Kroeger & Sorensen (2010) about “A parent training model for toilet training children with autism,” which is based on Azrin & Foxx’s initial study with some key modifications. This study focuses on parent-conducted toilet training in the home and was completed with two children with autism.

As mentioned in previous blog posts, the best interventions usually are multi-pronged approaches. This is no different. While there are multiple steps involved, it’s important to recognize that one of these children was fully toilet trained in 4 days, and the other in 11 days. Both children maintained toilet training skills when researchers checked in at 2 weeks, 6 months, and 3 years. Setting aside a few days or a couple of weeks to complete this intensive protocol may be intimidating at first, but achieving similar results as the two children in the study has a huge impact on the life of your child and the entire family.

Prior to starting the intervention, they received medical consent and clearance from the children’s attending developmental pediatricians. They then performed a preference assessment (the RAISD) to determine reinforcers. The study then states that “The families were asked to restrict the children’s access to these reinforcers for a minimum of 3 days prior to implementing the intensive training treatment protocol.”

The intensive toilet training program had 5 components:

Increased fluids: In consultation with a pediatrician, the study states that “parents were instructed to increase the children’s access to fluids for 3 days prior to implementing the training.” This increase in fluid intake continued until 6:00 PM on the first day of training.

Toilet scheduled sitting: Since the protocol was completed in the privacy of the children’s homes, the children were able to remain undressed from the waist down while being toilet trained. The children were continuously seated on the toilet, then able to leave the toilet for voiding in the toilet, or for brief “stretching” breaks. As they achieved higher frequency of appropriate voiding in the toilet, the amount of time spent on the toilet decreased and the amount of time escaping the toilet increased. (The schedule for fading out time seated on the toilet is detailed in Table 1 of the study.) Also, while seated on the toilet, the child was able to play with preferred items, but not the most preferred items.

Reinforcement for continent voids: According to the study, “If the child successfully voided while on a scheduled sit, they were provided immediate reinforcement (primary edible reinforcement and planned escape to a preferred activity). If the child self-initiated a void while on a break, he was provided immediate reinforcement and a new break time was begun after the self-initiated break.”

Redirection for accidents: When accidents occur, a neutral verbal redirection was provided, such as “We go pee on the toilet” and then the child was physically redirected back to the toilet. Once they were on the toilet, a scheduled sit was begun.

Chair scheduled sitting: Once the child began to experience success with voiding on the toilet, a chair was placed next to the toilet. During scheduled sits, the child would sit on the chair. If he began to void on the chair, the study states that he “was provided with the least intrusive, minimal, physical prompt. When he independently moved from the chair to the toilet to void three consecutive times, the chair was systematically moved away from the toilet in 2-feet increments.”

The study goes into further detail on each of these five components, as well as how to generalize the skill and how parents were trained in the protocol. The study made modifications to the Azrin & Foxx study to make it easier to apply in the home setting for parents, and it removed any form of punishment.

While this is a comprehensive toilet training program that requires a high level of time and attention from the parents, it is set up to help parents achieve results in a relatively short period of time.

The study states, “Parents of incontinent children with developmental disabilities report higher personal stress and distress likely related to the toileting problems presented by their children than parents of toilet trained children with developmental disabilities. It could be deduced then that continence training not only increases associated hygiene factors and access to activities and placements, but also increases the quality of life for the parents by reducing stress and subsequently for other family members such as siblings as corollary recipients of the distress” (Macias et al., 2006).

The potential to improve the quality of life for both your child with autism and your entire family is worth the challenge of implementing this protocol.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals.

Tip of the Week: Minimize Tantrums with High and Low-Quality Attention

Recently I began working with a family who has a six year old boy with autism named Austin (all names and identifying details have been changed to protect confidentiality). His mother was describing Austin’s behaviors when he couldn’t have something he wanted. She told me about him hitting his parents and younger brother, sweeping all materials off tables and shelves, and throwing himself on the floor. She was worried that he might hurt himself or hurt someone else. She told me that when he started this behavior, they would say, “Stop hitting.” They had been doing this for months, but his behavior had not improved.

Later that week, she sent me a video of Austin having one of his “mega-tantrums.” It was exactly as she described, though there was one important detail she had missed. Austin consistently sought out eye contact and physical contact with both of his parents. If they were moving around to pick up an item, he would move his body and face to maintain eye contact. If one of them sat down, he would quickly clamber into their lap while screaming and pounding their arms or the furniture. If one parent walked out of the room, he would immediately run to the other parent. This behavior was clearly maintained by attention. In order to decrease the behavior, his parents had the very difficult task of ignoring it ahead of them.

The next week I went out to their house to help them practice ignoring the behavior. We put in place a three-pronged plan:

  • When Austin wanted something he was not allowed to have, he would be given a choice of options. The options should be for preferred activities. For example, if he wants to watch TV but isn’t allowed to right now, the parent can say, “Austin, you can play with trains or you can do a puzzle.”
  • Once Austin starts hitting or screaming, he does not receive any attention. This includes eye contact, physical contact, and verbal prompts/reminders from his parents.
  • The parents can start one of the motivating activities in another location. For this family, the parents sat with the younger brother at the dining room table and the mother read a book out loud.

As I had forewarned the parents, Austin’s behavior initially intensified as he realized he was getting zero attention. He took a box of toys, turned it upside down, and dumped it all over the floor. His mother kept reading to his brother. He ran over to his father and hit his legs while screaming, the father got up and walked away. Then, Austin did something he had never done before. He climbed up onto the table and started walking around on the edge of it.

His mother looked at me and said, “How do I avoid giving him attention for that?” This is when it’s important to consider high-quality attention and low-quality attention. In order to keep him safe, his mother needed to be more proximal. She walked near where he was on the table, but did not pick him up, did not make eye contact, and did not speak to him. (I let her know that if she felt he was very unsafe, she could pick him up and remove him from the table but quickly letting him go, and withholding eye contact and verbal interaction.) She stayed nearby to catch him if he fell, but she did not provide attention for this dangerous behavior. Her proximity (or if she had chosen to pick him up off the table without eye contact or verbal interaction) constitutes low-quality attention. High-quality attention is only saved for appropriate behavior.

Think about what high-quality attention means for a young child: big facial expressions, expressive tones of voice, big movements, and physical contact. Prior to our intervention, Austin was getting all of those types of high-quality attention for inappropriate behaviors. But now he wasn’t getting any of that type of attention.

However, Austin had been engaging in inappropriate behaviors for attention for 2-3 years now, so changing this behavior takes a little time. For our first day of the intervention, Austin continued to yell and throw items for 40 minutes before he finally went over to where his mom was sitting and reading aloud the story (actually, the third story in a row). When he was near and quiet, his mom started reading in a wonderfully expressive tone, adding voices to the characters. Austin came closer. When a funny part of the story happened, Austin laughed. And then Austin’s mother encouraged him and his brother to imitate the characters in another part of the story. After he imitated the characters, he sat next to his mom and she put her arm around him. All of these high-quality forms of attention were now being given for appropriate interaction.

Sometimes you have to provide some attention in order to keep a child safe, but think to yourself what is high-quality attention for your learner: it may be tickles, silly faces, expressive speaking, or physical contact. Reserve those things for appropriate behaviors.

A few final notes about this intervention: (1) Austin’s inappropriate behaviors will probably still continue for a little bit longer. I’m certain that he will test it out a few more times, and his parents will have to stick to the intervention in order to completely get rid of what they had deemed as “mega-tantrums”; (2) This intervention only works for behaviors maintained by attention. If you’re uncertain about the function of a behavior, confer with a BCBA or an ABA provider for help; and (3) If you’re not certain you can follow through if the behavior persists for a long time (such as 40 minutes in Austin’s case) then give in the first time the learner asks. For more information on this, look back at my tip on Choosing When to Battle.

Tip of the Week: Choose When to Battle

Instead of choosing your battles, choose when to battle.

Recently at a workshop I was providing, a parent shared a difficult behavior that her 8 year old son with autism was exhibiting. When it was time to play with trains, he wanted a specific train. He would scream and cry until his mom found the specific train he wanted, and sometimes she was unable to find it at all. The screaming often lasted 30-60 minutes. She said this frequent behavior was stressful for both her, her son, and her other two children.

My suggestion to her was to tell her son “wait quietly,” and that she not search for the train while he was screaming or crying. As long as he was quiet, she would search, but when he started screaming or crying she would stop searching. We talked about the importance of just asking one time to “wait quietly,” and whether or not her son would benefit from a textual prompt (such as a paper that said “Wait quietly. I’m looking.”) As we discussed this, the parent said, “I just know I can’t do that all the time. I have to pick my battles.”

It’s important to note here that I have very different expectations for teachers and parents when it comes to implementing interventions. A teacher’s sole purpose when they’re with your child is to teach in a way to meet their unique needs. Teachers should be implementing an intervention 100% of the time.

Parents, on the other hand, are in a very different situation. Parents are frequently trying to implement the intervention while also cooking dinner, answering the phone, taking care of other children, etc. Unless the intervention is addressing a dangerous behavior, I don’t expect parents to be implementing the intervention 100% of the time. It’s unrealistic given the different environment the parent is working within.

But I’m not letting parents off the hook! Let’s go back to the example from the workshop.

My response to this parent was that picking your battles doesn’t necessarily mean choosing to address other, less stressful behaviors instead of this behavior. Instead of picking your battles, think of it as picking when to battle. For this parent, she would direct her son to “Wait quietly” when she knew she was ready to implement the intervention. When she knew she wouldn’t be able to implement the intervention (because she was excessively tired or she had the other two siblings with her and no other adult support) she would not say “Wait quietly.”

This may seem a bit silly at first, but over time, the child learns that when mom says “Wait quietly,” she means it. I also suggested that the first time she tries it, she should set herself up for success. Have her mother babysit the other two children, have a therapist or teacher come provide support or coaching if possible, and make sure she has enough time to follow through on implementing the intervention successfully the first time. While it takes some time and planning, the long term benefits can be powerful for the whole family.

I do not know if this particular parent tried out any of my suggestions after the workshop, but I have used this strategy with many other parents over the years. Two things tend to happen. One: the child figures out the parent means what he/she says. Two: As the child learns this and the parent experiences success, the parent uses the intervention more frequently creating a calmer, less stressful environment for both parents and children.

Toilet Training Tips

So, I’ve taken to spending the majority of a weekend when necessary, with families when it comes to toilet training their child.  It’s highly glamorous, really.  Just the mom, the dad, the child and me cooped up in the family bathroom for six or more hours at a time.  I brought donuts on the second day just in case anyone was in need of a morale boost since I left the parents on their own at the end of the first day.  They had a fresh pot of coffee on and were still in good spirits.  All kidding aside, it’s really the only way to do it.  During the weekend you are free from the week’s distractions and you have the entire family there for carry over, which in the long run is the deciding factor in a child’s success and generalization.  So, while I’ve been helping families with toilet training for years this was the first time I spent two full days helping to implement the protocol.  I thought I could share with you my general tips from years of experience along with some new insights from my newest adventure in toileting that I like to call the “weekend warrior”.

 First, we will start with the general tips:

 Prepare, prepare, prepare! This means talking about toileting every chance you get.

  • Learn your child’s routine (when do they typically “go”)
  • Watch videos about toileting
  • Read books or social stories about toileting
  • Use a doll for pretend toileting
  • Allow your child to watch you use the toilet
  • Provide opportunities to “try” without any pressure

 Gather materials. You want to have it all before starting.

  • A comfortable potty seat that fits over the toilet
  • A footstool for resting their feet and providing postural support
  • Data sheets
  • A timer
  • Lots of underwear!
  • Highly preferred snacks and drinks
  • As many reinforcers you can identify as highly motivating

 Several days before you begin:

  • Increase fluids to make sure child is well hydrated
  • Eliminate access to all items identified as highly preferred reinforcers to maintain potency

 What did I learn?

  • Adherence to the protocol is important but above all there needs to be a discussion regarding what makes the most sense for the family.  This was more apparent to me than ever having been in the home for so many consecutive hours.  For example, I feel strongly about going straight to underwear from diapers without using an intermediate type of coverage.  However, the stress of cleaning up possible accidents resulted in anxiety on the part of the parents, which in turn led to stress on the child (reducing success).  So, after two days in underwear we went to pull-ups and guess what, the child kept it dry the majority of the time!  This experience should be a collaborative partnership with the family, whatever protocol you are using; if it doesn’t make sense to the parent it won’t work.  It is our job as providers to individualize the plan for each family in a way that empowers them without compromising the core details of the protocol. 
  • I also feel rather strongly about starting on the regular potty instead of a little child potty.  However, we ended up doing a combination of both with great success.  It turns out that the child did better with the postural support provided by the child potty.  Since, he didn’t show any fear surrounding the use of the actual toilet we decided it was ok to use the potty and later transition to the toilet. 

If you think your you and your child are ready these are my “go to” references.  Best of luck!

Azrin, N.H., and Foxx, R.M. Toilet Training in Less Than A Day. New York, NY: Pocket Books, a division of Simon & Schuster, Inc., 1976. 

Kroeger, K. and Sorensen, R. (2010), A parent training model for toilet training children with autism. Journal of Intellectual Disability Research, 54: 556–567. doi: 10.1111/j.1365-2788.2010.01286.x.  (Click the title to download the full article).

 

Autism Moms Have Stress Similar To Combat Soldiers

We came across this article from a few years ago but thought that the content was certainly still relevent: mothers of adolescents and adults with autism have stress levels that match that of soliders in combat!? According to the study reported in the Disability Scoop, mothers of children with autism spent a greater portion of their day caregiving, were twice as likely to be tired and three times as likely to have experienced a stressful event compared to mothers of children without disabilities. In addition, their bloodwork indicated that a hormone associated with stress was very low, consistent with people experiencing chronic stress such as soldiers in combat.

That said, the mothers in the group were just as likely as their peers to report a positive experience, volunteer their time and help out their friends, in spite of more stress and less sleep. How much more amazing can one group of people be?

As parents, particularly, the moms out there, do you feel you’re able to manage your stress effectively? Do you have any advice for other parents out there?

Special Needs Talk Radio has debuted!

Coffee Klatch, a corporation dedicated to providing resources and educational programs for families with special needs children, has a new sister company called Special Needs Talk Radio which features interviews with leading experts, advocates and more in the field of Special Needs. Special Needs Talk Radio debuted on September 6 and will present six new shows hosted by twelve different moderators. This new network is aimed at providing parents with the most current news and information covering a wide range of special education topics.

The network will present six shows that will be broadcasted weekly and are currently scheduled to run through mid-October. They cover topics from Parenting Issues, Raising children with ASD, Special Education and the Law, Inclusion and more. The website also offers interactive features that allow users to be actively engaged in the content by suggesting topics, making comments, and asking questions that can be answered during the live shows.

To find the show schedule and to learn more about each program and upcoming guests, visit:

Special Needs Talk Radio

President’s Day

President’s day is on Monday and it is likely that there may be some gaps in your child’s home program or perhaps they are home without therapy because school is closed.  Either way we all know that structure and the maintenance of routine play a big role in a child’s success.  Your best bet is to not leave anything to chance.  Create a picture schedule of the planned activities for the day substituting any gaps with activities that your child has had success with independently or activities you can facilitate.  Depending on your child’s abilities and his or her individual interests this schedule may include some new activities mapped out by using pictures of each step involved.  I’ve really enjoyed simple cooking activities with my students lately.  The simple act of making lemonade together provides so many opportunities to expand language, turn-taking, following directions and sequencing.  The best part is that when you are done you have delicious lemonade to drink.  Whenever I include kitchen activities I like to draw up a pictorial recipe before hand that the child can follow along with.  It is also important to keep in mind that not everything has to be explicitly therapeutic or educational.  You can have structure without it necessarily including direct instruction.  In fact I think that holidays are the best time to mix in some more varied activities.  Try printing out images of your child’s favorite storybook character and paste them into a journal while writing your own story to go along with the pictures.  Parents and caregivers sometimes shy away from incorporating novel activities into a schedule but with some preparation and guidance it can be an enjoyable “day off” for all.

What does at day off look like in your household?  Maybe you can share a fun activity you’ve recently tried?

Thinking About All the Parents Out There…

With the holidays approaching we all know that gift giving will soon be in full swing.  This undoubtedly means that your families will be generously bestowed with electronic cause and effect toys.  These types of toys help to stimulate development as your child discovers the function of the toy and how to elicit certain responses from the object.  Children with special needs tend to have a longer relationship with these types of toys as they often serve as powerful reinforcers, meet ongoing sensory needs and continue to provide opportunities to address language and motor development.  Additionally, it may take a special needs child longer to master this type of play before moving onto more imaginative and creative play.  What I’m getting at is that these toys are going to be in your house longer and some of them are LOUD.  So when I came across the following post on Apartment Therapy the other day it jumped out at me as a piece vital information for all of you special needs parents out there.  We are always thinking about adaptations for toys and games for the kids but what about the parents?  A former sound engineer for children’s sound books shares a secret on how to turn down the volume on these toys.

Check it out and Happy Holidays!

Bringing Down the Volume on Electronic Toys

How and When to Help?

So, I’ve been falling a little behind lately with my blog posts.  The main reason is that I’ve been feeling overwhelmed.

My current caseload is four very different children and their even more dramatically different families.  I’ve been doing this work a long time and can easily move from case to case implementing programs ranging from simple gross motor imitation to reciprocal conversation to complicated play schemas involving a peer.  In fact, I’m feeling invigorated by the current challenge of having children who are in such different places developmentally.  When it comes to the kids, right now I’m bringing my ‘A’ game.

The thing that is leaving me feeling a bit discouraged is how difficult it can be to present the same information to different parents and caregivers especially when it comes to family training sessions.   One parent wants me to be a straight talking express with no holds barred.  Another needs me to tip toe around sensitive issues while modeling techniques and strategies.  This discrepancy has left me feeling confused and frustrated.  I haven’t felt that it was an appropriate blog topic because  quite frankly, the last thing parents need is to listen to me complain about not always knowing when and how to help them.

But then I started thinking… who better to ask than the great group of people we have reading the Different Roads to Learning blog?  I would love to hear from parents and professionals alike about their successes and failures regarding communication with each other.  Tell us your stories!