Tag Archives: family struggles

When Kids Are Just Kids: Avoiding Over-Pathologizing Behaviors of Children with Autism

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A diagnosis of autism can be very challenging for a child and for his/her family. But one of the most difficult aspects of autism is that it is not clear cut what behaviors are related to autism, and what behaviors are related to just being a kid. Every child tantrums sometimes. Every child talks back sometimes. Every child engages in dangerous behavior sometimes.

When I look back on my own childhood, I think of several behaviors I exhibited: in third grade I cut my own hair while my teacher’s back was turned, in fourth grade I got mad at my brother and threw an alarm clock at him, and in seventh grade I loved Agatha Christie books so much that I frequently refused to go outside and sat in my room reading by myself for hours on end. If I had autism, any one of these behaviors may have been pathologized instead of being considered as just a part of growing up.

So how do you parse through all the behaviors your learner is exhibiting and figure out which ones you should actually be worried about? Here are a few questions to ask yourself in determining behaviors to address:

  • First and foremost, is the behavior dangerous?
  • Secondly, how often and for how long does your learner engage in the behavior
  • How different is this behavior from the learner’s same-age peers? For example, does your three year old cry for a couple minutes when told that she can’t have her favorite toy, or does she cry for two hours and refuse to engage with any other toys for the rest of the day?
  • How is this behavior interfering with the learner’s ability to learn?
  • How is this behavior interfering with the learner’s ability to engage with peers and family members?
  • Is the behavior related to a skill? For example, pacing the room and flapping your arms is typically not related to a skill, but building Lego models can be related to a skill. If it is related to a skill, think about ways to provide opportunities for expanding that skill.

The answers to these questions should be able to inform the decisions that you make in intervening with behaviors. And we should remember that above all else, kids with autism are still just kids.

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, she has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

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

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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.

Pilot Study Finds that Parent-led Early Intervention Can Reduce Autism Symptoms in Babies

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Autism symptoms can display in babies as young as 6 months old. A new pilot study at the UC Davis MIND Institute found that parents could reduce symptoms of autism in babies under 12 months by using intervention treatments in the home as detailed in the Early Denver Start Model.

As reported in a recent Huffington Post article, the study involved parents and their babies between 7 and 15 months of age in a 12 week-long treatment conducted by parents in home-like environments. The treatment was based on the Early Denver Start Model and revolved around parent-child interactions, such as bathing, feeding, playing, and reading. Four comparison groups were also included: Those who were at a higher risk for autism because of an affected sibling; those who were at low risk; those who had developed autism by age 3; and those with early symptoms who received treatment at a later age.

At the start of the study, all babies displayed early signs of autism, such as low interest in interactions and repetitive behaviors, which increased by around 9 months. However, by 18 to 36 months of age, the children in the treatment group produced lower autism severity scores than the comparison groups who did not go through the treatment.

The Huffington Post article “Pilot Intervention Eliminates Autism Symptoms In Babies” highlights the importance of early intervention in autism treatment. While this research is highly preliminary, the findings show that therapy and early intervention are key factors in treating infants and children with early signs of autism, and possibly in reducing them altogether. This study offers hope for parents and professionals in helping their children succeed with more tools and resources for the earliest stages of autism.

Read more about the pilot study on Huffington Post here.

How a Special Needs Mother Does It On a Typical Day

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Nicole Zeitzer Johnson and her family. (NY Times)

How do so many special needs parents do it? We were incredibly moved and inspired by the story of one special needs mother, who explained a typical day with her 7-year-old son and 2-year-old daughter who suffers from FoxG1, a rare genetic neurological condition associated with seizure attacks and impaired development.

This article reminded us of the bravery and commitment of all the parents in our community, and how positivity is really the best way to “do it all.”

How Nicole Zeitzer Johnson, Communications
Director and Special Needs Parent, Does It

Tip of the Week: Use Technology to Promote Social Interactions Between You and Your Child

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Last month I had the privilege to speak in New Jersey at the 2014 Statewide Conference for Fathers of Children with Special Needs. I love the opportunity to speak with parents, and this conference allowed for lots of small group discussion that centered on the individual needs of each of the families represented there.

My focus was on utilizing technology, and one of the fathers said, “You know, I see what you’re saying about how I can use the iPad to increase social interaction, but my son won’t do that with me. When I try to work with him on the iPad, he just wants to go to Temple Run. He won’t play with it the same way he does with his teachers.” This question highlights the differences between the home environment and other environments. This is a common problem that parents face, not because they’re doing anything wrong, but because they have a different relationship with the child than the teachers do.

Go back to when you were in middle school. Imagine that you’re at home with your parents, you’re in your room engaged in one of your favorite activities, and your mother comes in and says, “Let’s watch a movie about how the solar system was created.” It is highly unlikely that you are going to leap at that opportunity. At home, you like to have your own space and free time, you have lots of choices for what you can do, and there are options that are more motivating than watching that movie.

Now think of the exact same situation, except you’re in your middle school science classroom and the teacher says, “Let’s watch a movie about how the solar system was created.” You never get to watch movies in that science class, you usually have to take notes and worry about when the teacher might call on you to answer a difficult question. It is much more likely that you are going to want to watch a movie in this scenario. Compared to the options you usually have during science class, watching this movie is highly motivating.

The same thing happens at home when you try to introduce an educational or challenging activity, and for learners with special needs, an activity we think of as fun may in fact be highly challenging. It’s important to acknowledge that parents are working with the child in a different environment so that we can create strategies that are feasible for creating success in the home. There are some things you can do to make it a bit easier on yourself when introducing iPad or tablet activities.

My biggest tip is to offer choices. For example, instead of saying “Let’s play on the iPad,” say, “Do you want to play Animal Race on the iPad or go outside and jump on the trampoline together?” This way, you’re labeling a specific app instead of providing free access and you’re creating an opportunity for interaction no matter what the child chooses.

My second tip is to utilize built-in accessibility tools. Use Guided Access to lock the app. This way, the choice really is to just play that app or select the other option presented. If the child selects the other option, that’s fine! You can let them know when they have free time on the iPad and when they only have the option of playing with a particular app. You can also limit the amount of time they play quite easily by going to your “Clock” app on the iPad or iPhone. Look at the menu of ringtones, scroll down to the bottom and select “Stop Playing.” Set the time, and when time is up, whatever app your child is playing with will automatically close. If you have a passcode set for your phone, then the passcode has to be typed in before access to the app is available again.

Some learners also respond very well to visual cues to signal when they have free time on the iPad versus structured time. This can be accomplished by changing the color of the iPad cover (my students know that the “orange iPad” is for structured time) or by placing a reusable sticker on the edge of the screen.

My final tip is to consider motivation. There are apps out there that I think are great, but I have to start with what my particular learner will be interested in and build from there. Find apps that have a characteristic that should appeal to your learner, such as specific cartoon characters, animals, or music.

Using these simple tips can provide some success in using technology to promote social interaction between you and your child, or between your child and his/her siblings and peers. If you’ve used other strategies successfully, please share them with us on Facebook.

Happy Fourth of July!

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Happy 4th of July!

The Fourth of July is a time of celebration for families and friends to enjoy the summer with barbecues, fireworks, and patriotic music. We hope that you will be enjoying the long weekend this year with your loved ones, whether you will be staying at home or going away.

The displays of fireworks are beautiful and inspiring. But we know that these displays do not always bring smiles and wonder to children with autism. Here are a few helpful tips we found by ABPathfinder on making your Fourth of July evening more enjoyable for you and your children:

Prepare your child. If they’re old enough to understand, tell them about the fireworks. Let them understand what will happen and emphasize that it is a safe, fun way to see some beautiful displays.

Let them in on the planning. Let the child take part in the planning. Have a picnic, determine what you’ll bring, where you’ll go. Try to provide a set time for each activity, including bringing a timer. If the child is enjoying the display, you can always turn the timer off. If the child is not enjoying the display, you can help them refocus by telling them “Look. Just 3 more minutes on the timer!”

Show them videos of displays. Help the child prepare for what they’ll see by watching videos of past firework celebrations. There are some great sources on YouTube, and it will allow the child to see the beauty of the fireworks while still in their controlled setting.

Fingerpaint some fireworks. Let the child explore the beauty of the fireworks by helping them fingerpaint their own display. Use black construction paper for the night sky and colorful paint for the exploding colors!

Provide ear plugs. Obviously, if your child has auditory sensitivity, you’ve already got this covered. But the report from some of today’s fireworks can be overwhelming. Be prepared up front for it.

View displays from a distance. There’s no reason you have to be right under the displays. Most fireworks displays are better viewed from a distance. Find out what displays are occurring in your town, then scope out some parks or parking lots where you can get a good view of the event.

Provide comfort items. Taking along a favorite blanket or teddy bear can be just the thing the child needs to keep calm. Simply holding it can provide the child with comfort and control over their environment.

Let them explore child-safe fireworks. There are a number of child-safe fireworks available that can give your child an opportunity to participate in the fun. Champagne poppers and snaps are a good way for your child to join in. Be careful with sparklers and smoke bombs, in case your child has an urge to grab the flames.

Join another special needs peer. Joining with another special needs family can also be helpful. Not only does it give your child someone to play with, but it also provides your child with a peer that can model appropriate behavior for the celebration.

Have fun. Last but not least, be sure to have fun. Showing you child that you’re not worried can be the first indicator on how they should react. Hopefully, they’ll join you in the fun!

The Fourth of July can be one of the most challenging holidays for families with Autism, but we hope that these tips can make it a fun, safe event for the whole family.

Tips for Traveling with Kids with Autism

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Taking any long trip when you have a child with autism can be daunting, especially when it involves long periods of time in the car or on an airplane. Below are a few tips for reducing stress during travel time.

  • Create a visual or textual schedule for your child.  Because trips don’t always go as planned (e.g. planes are delayed, you get caught in traffic), it’s probably not a good idea to list specific times that activities will be occurring. But it is helpful to show the order in which they will be happening.
  • Prepare your child for potential problems.  If possible, talk about coping methods ahead of time and practice them if possible. What can you do if you’re stuck in traffic that isn’t moving? What are your choices if we experience turbulence on the plane?
  • Provide information for your child.  Show photos, books, maps, etc. of the locations you’ll be traveling to. You can also read books or show photos of activities you’ll be participating in, such as swimming or skiing.
  • If possible, pack more than one activity bag.  Bags filled with a few favorite activites or small toys can be useful for keeping kids entertained on trips. For long trips, your child may get bored with items in an activity bag. It’s useful to keep a second one stashed in a suitcase or other bag if you’ll be on a very long flight or car ride. It can also be useful to have a separate activity bag for the return trip if you know your child may lose interest in the first one.
  • Provide options when possible.  Access to choices can go a long way in keeping kids calm. Choices can include what videos to watch, snacks to eat, etc.
  • Check in advance with guest services at hotels, resorts, or theme parks.  Ask what modifications and accessibility options they may offer. Many places offer special accommodations and are open to any unique requests you may have.
  • Prepare in advance for any sensory concerns.  Bring noise-cancelling headphones, ear plugs, fidgets, etc. to have available, as needed.

Remember that long trips are difficult for all children, and many of the tips listed above are beneficial for siblings who do not have special needs.

“Ability vs. Disability” by Gary Shulman

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It is important to remind ourselves as parents and providers of children with special needs of the little joys and pride we take in the skills and passions our children display. We recently received a moving anecdote from Special Needs Consultant and Trainer Gary Shulman about Matthew, whose six years of life has touched so many around him despite his label of being a disabled child. Please take a moment to read his story, for we do believe that “behind every child with a label of disability is a child with ability to be cherished, praised, and supported.”

Ability vs. Disability

Gary Shulman, MS. Ed.
shulman.gary@yahoo.com
Special Needs Consultant and Trainer

April, 2013

During my more than 24 years as Program Director of Social Services and Training Coordinator for Resources for Children with Special Needs and now as a private consultant and trainer, I have had the great pleasure of asking thousands of parents of children with disabilities to tell me about their children’s talents, skills, abilities and passions. Very often that question has been met with astonishment, “Someone is actually asking me to accentuate the positive as the old song says!” What a concept! My heart has always been warmed and my soul and spirit uplifted by the myriad responses that gleefully utter from the lips of these proud parents: “Susan is a gifted musician-she hears a song once then sits down and figures it out on the piano”, “My son swims like a fish!” “Thomas has memorized the entire subway system-he is passionate about trains.”, “Hector always greets me with a hug and seems to know when I am feeling down-he brightens up my life.” …and on and on. My response is to have everyone in the room praise and applaud these positive stories of hope, joy and delight. We of course also move on to discussing the needs, wants, wishes and dreams.

I often tell the story of an “angel” who blessed this world by the name of Matthew. When Matthew was born, the doctor who had obviously not been through any sensitivity training, felt compelled to tell the new parents the bad news that after conducting genetic testing, Matthew was determined to have a very rare condition called I-Cell Disease. “So what does that mean?-when can we bring Matthew home to enjoy and love him?” The doctor proceeded to elucidate that Matthew should not be brought home but rather institutionalized! He then felt compelled to share that Matthew’s immunological system would over the course of 5 or 6 years, destroy all organs in Matthews tiny body. “Why put yourself through such misery-he will never grow or develop. Needless to say these spiritual, caring, loving dedicated parents took Matthew home and received Medicaid under the Medicaid Waiver program to meet many of his complex medical needs. He was enrolled in Early Intervention where his miraculous and talented Occupational Therapist Ilaine, only saw the potential skills, talents and strengths. Matthew learned to happily feed himself, walk with a walker, sing, dance and love……..oh how this child gave and received love. He was pure love. This beautiful child positively affected ever human being who was fortunate enough to have the joy of knowing this angel on earth. I made him pancakes during one visit and he stopped eating for a moment, turned his steroid filled, barely moving body, to face me so he could tell me, “Hey Gary! These are delicious!” Matthew by the way had a photographic memory and could tell you every player in the Yankee dugout, give you directions to Grandma’s house and direct you to all food items in the supermarket.

There is no miraculous ending here — Matthew died after 6 glorious years on earth. Six years of love and joy. Six years of enhancing the lives of everyone who was fortunate enough to have known this miraculous child. At his funeral were all the friends, neighbors, family members and admirers whose lives had been touched by this angel of humanity. The doctor who had diagnosed Matthew of course was not present. His memory lives on in every workshop I conduct. His parents graced me with a gift that I will always cherish. Knowing that Matthew would soon be leaving this world, they had him record anything that he wanted to say to those people in his life whom he cared for. Sitting on my dresser is a small photo book with Matthew’s picture in it. There is a button in that photo-book. When you press that button, Matthew’s sweet voice can be heard saying, “Hello Gary-I love you!” His spirit helps to motivate all parents of children with disabilities who have been told by “professionals” what their children would never be able to do. Just as the Bumblebee should not fly according to scientists, yet does (because nobody has ever told the bumblebee he can’t fly) so too will all children with disabilities continue to FLY as long as we continue to recognize that behind every label of disability there is a human being with abilities, talents, skills and passions…………………..and love to give and receive. We must never take the hope away!

Behind every child with a label of disability is a child with ability to be cherished, praised and supported.

 

A Grandparent Guide for Happy Holidays

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This post was written by our old friend Dr. Erica R. Holding for the Grandparent Autism Network. Dr. Holding has a Ph.D. in Psychology and a Masters degree in Counseling Psychology. She is a Board Certified Behavior Analyst-Doctoral level and founder of Avita Nova, which provides early diagnosis and ABA therapy for children and parent training and support. This article is based on her many years of working with families affected by autism.

When you have a grandchild with autism, the holiday season can present some extra challenges for your family. With careful planning your family can make the holiday season warm and happy for everyone.

If you don’t get to see your grandchild regularly, it is important to remember to have realistic expectations for your time together. Before the visit, call your son or daughter to ask if there is anything to do or have on hand to make the visit more enjoyable for your grandchild. You can have favorite toys, food and videos ready and plan to go to places that they like to visit.

Grandparents often express fear and anxiety about how to interact with their grandchildren.  You may feel rejected because you expect welcoming big hugs and kisses and may feel frustrated and unloved if that does not happen. Your grandchild may have sensory issues that make it overwhelming and even painful for them to be touched or hugged. They may not have the skills yet to know what to do or how to respond or they may just be learning these skills, but shut down around new people or in new situations. The most important thing is to not take this personally. They are not rejecting you. A high five or brief gaze may be all that they are currently capable of doing.

If you are planning a party or other special event, ask your son or daughter if they feel your grandchild will be comfortable being present. You may want to change your plan to be more inclusive and focus on creating new holiday traditions together.

Keep demands for social politeness at a low level.  Even if your grandchild has learned new social skills like greeting people by saying hello or shaking hands, don’t anticipate that will happen when there is a lot of stimuli like lights, music and new people in new settings.

Pace yourself and be flexible.  If you have 3 events planned for a day, but there is a midday meltdown after event # 1, maybe it’s best to skip the others. It is better to have one great time together that you can all remember fondly than to watch the rest of the day deteriorate into tantrums or other behavior problems. New situations, new people, and new schedules can be overwhelming for a child with autism. Your grandchild is not being willfully defiant or difficult, and your son or daughter does not have poor parenting skills. Too much input and too many changes can be very hard for children with autism to process. Let your son or daughter know that you understand this may be what is responsible for meltdowns and negative behavior.

Create outlets or escape routes.  Prepare a place in your home that is quieter and provides a comfortable spot where you grandchild can “take a break” from all of the excitement.  Having a place to go for some respite time may prevent you from having to leave or end an event. Just taking a break may be all that your grandchild needs to get on to the next event.

Manage sensory input.  The holiday season is filled with new experiences. Manage these to the best of your ability. If you are taking a trip to the mall, try to go at times when the mall is less busy, or make the trip shorter. The holidays might not be the best time to try new foods. Try to have something your grandchild likes at every meal.

Control Schedules.  Routines and knowing what is happening next is often very important to individuals on the spectrum. Holiday schedules deviate completely from our daily normal routines and this can be especially difficult for a child with autism.  Ask your son or daughter how best to handle daily schedules. Some children with autism can be included in the schedule making and this is very empowering for them. Other children may be more able to understand when given a visual schedule. Find out what works best and if an unexpected change is just about to happen, find out how best to communicate that change.

Be sure to compliment your grandchild and your son or daughter about the new abilities and progress your grandchild has achieved.  Grandparents can be supportive good listeners who consistently give their families loving reinforcement at the holidays – and throughout the year.

Share Your Experience: Call for Photos

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Would you like to be featured in the next Different Roads catalog? We’d love to shine a spotlight on you and your child’s journey. Send us a photo of your students using your favorite product from Different Roads. Or send us one that captures your child’s triumphs, both large and small. We’ll be honoring your experience in our next issue.
 
If you’re interested in participating, send a photo with your name and contact information to abigail@difflearn.com with the subject line CATALOG PHOTO.