Safety, Wandering and Emergency Planning for Individuals with Autism: An Interview with Gary Weitzen of POAC and the Autism Shield Program

The safety of individuals with autism is an enormous concern for parents and caregivers across the country. POAC Autism Services consulted with Dennis Debbaudt to pioneer The Autism Shield Program providing safety training for police, fire fighters, and EMTs. More recently, POAC has developed a companion workshop designed for caregivers, teachers, and child study team members.

Sam had a chance to talk with Gary Weitzen, Executive Director of POAC Autism Services. Gary is an excellent source of information and has been incredibly generous and proactive in sharing his experiences and knowledge with the community. POAC has now trained more than 15,000 police officers and first responders on autism recognition and safety. We’re sure you will find Gary’s insight and suggestions exceedingly helpful and applicable to children and adults of all ages.

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Fifteen years ago, Gary Weitzen’s five-year-old son with autism went missing. The first place his parents looked was the lake, because like many children with autism, they knew he was drawn to water. Fortunate to find him in time to save him, this experience and many similar stories Gary would hear over the years, were the impetus for creating the Autism Shield Program. Gary is now the Executive Director at POAC, an organization in New Jersey that provides free resources for the autism community.

“The Autism Shield Program is a comprehensive program really designed to keep our children safe in their schools, homes, and communities,” Gary said. “It originally started training police officers. Multiple FBI studies have shown that if you have autism or any other developmental disability you’re seven times more likely to encounter police than if you don’t have autism.  We’ve expanded it to the current program which also includes firefighters, EMTs, emergency first responders, school nurses, prison guards, and parents.”

One thing that Gary stresses repeatedly is the need for children with autism to learn how to swim.

“I lived with the fact that my son almost drowned. [Fifteen years ago] it was just huge numbers of children with autism drowning. Like every week another child with autism died, another child with autism died. It was overwhelming,” Gary said. “We thought, we have to do something here. We have to let parents and police know exactly what’s going on here.”

Eight years ago, POAC started training police departments on how to respond to emergency situations that involved individuals with autism.

Wandering Child

“I always tell the first responders the same thing: individuals with autism are never lost. Ever. They’re always going somewhere. They didn’t wander out of the house like someone with Alzheimer’s would or even a small child would. Our guys are going somewhere so you want to try to get the information right away about where you think they might be going from the caregiver. If you get that information beforehand, you can try to search there. Always start a search with bodies of water. Always. If the child is missing from a specific location, start with concentric circles out and hit every body of water,” Gary said.

Two more suggestions have been extremely beneficial for law enforcement and first responders in dealing effectively with individuals with autism. The first is to speak in short, direct sentences telling the individual what TO DO instead of what NOT to do. The second is to provide a prompt if the individual is without identification and not giving contact information upon request.

“Let’s say, you ask Charlie his phone number, he doesn’t give you a phone number. Ask his phone number again, but this time prompt it with the area code for that area. ‘Charlie, what’s your phone number, 9-7-3…’ Ninety-nine times out of 100 our guys with autism will finish their phone number.”

Gary also suggests families complete an Emergency Planner and to register with 911 in order to assist with improving safety and emergency response efforts. He urges families to utilize services such as Project Lifesaver.

“[Project Lifesaver] has been in existence for over 15 years. It’s LoJack for our kids who wander off. It was designed for Alzheimer’s patients and expanded to individuals with autism. There are now more individuals with autism that are on it than people with Alzheimer’s,” Gary said. “The success rate in 15 years nationwide: 100%. There’s never been a case of an individual on the program not being found alive ever, ever, ever. Hundred percent success rate. And the average time it takes from the time mom calls up ‘My child is missing’ until the sheriff’s officer has their child in their hands: 14 minutes.”

For individuals who may not tolerate the Project Lifesaver bracelet, Gary recommends creating a rule about cell phones and using the cell phone to ensure the individual is safe.

“If the rule is I always have to have my smartphone with me, in my pants pocket, guess what, they will always have that smartphone with them in their pants pocket. And it doesn’t have to be turned on,” Gary said. “It just has to have power and with iPhones and Androids you can get free apps like the Find My iPhone. There’s also programs out there with Verizon, AT&T, and other providers for $10 a month to put a family locator on the phone, set up a location, so if the phone moves 50 feet away from wherever the location, work, school, home, mom or dad gets a text instantly. The phone is on the move. And you can track it in real time. So there are so many things that are out there that people need to take advantage of and could take advantage of. They just have to be told about them.”

Beyond wandering and encounters with police, POAC also works with fire departments and with parents to increase safety during house fires.

“Very often, individuals with Asperger’s will hide in a house fire. And look, regardless of their age—face it—our guys and girls will re-enter a burning building. This happens all the time. All the time, firefighters come, they save the child, the child’s with mom, with other kids, and in the confusion of the fire, especially if there’s somebody still in the house they’re trying to save, we’ve had so many individuals with autism walk right back into the burning house in front of the police, firefighters, and their family and burn alive and die in the house.”

Gary recommends running fire drills at home with clear rules, such as, “Stand by Mrs. Smith’s mailbox.” It’s also important to identify who will be responsible for the individual with autism during an emergency. But Gary cautions that even with supervision, an individual with autism may be dangerously insistent about re-entering a burning building.

“So, where’s the best place to put a child at the scene of a house fire? Locked in the back of a police car. They’ll potentially scream, bang their head, maybe hurt themselves, but they’re alive. They’re alive,” Gary said. “We have videos of a child wandering off and the firefighter actually trying to hold them and the kid just runs across the street back toward the building.”

POAC has also provided many trainings for both parents and professionals about sexual education for individuals with autism. Gary describes sexual abuse as a major problem for individuals with developmental disabilities that people are afraid to address.

“Unfortunately, the sexual abuse rate with our guys to sexual predators is through the roof. The numbers for females are, close to 70% of females with autism were sexually assaulted by predators. Seventy percent. Seven out of ten of our girls are sexually assaulted before age 18. And the number’s around 40% for males. And I go into why that is, they’re the perfect victim. They don’t understand intent, they don’t understand the social rules.”

“You have to start sexual education with our guys in preschool,” Gary said. “That shocks people when I say that, but Sex Ed in preschool is, ‘What a bathing suit covers no one’s allowed to touch.’ That’s Sex Ed in preschool. So it’s not as scary as people think. But you know when most Sex Ed is taught to individuals with developmental disabilities? After something happens. After someone gets assaulted or after someone masturbated in class or someone touched someone inappropriately. You know, we better do something! No, they’re fifteen! Start early.”

“A big problem for parents of children with autism, and I say this as a parent of a child with autism, is that you’re thinking it’s not your kid. Parents on the lower end of the scale always think, ‘Nothing’s ever going to happen to my child because somebody’s always with them—it’s them kids with Asperger’s who are running willy-nilly off by themselves all the time—those are the ones getting into trouble.’ And then right across the room, the parents with the higher functioning kids think, ‘Well nothing’s ever going to happen to my son because my son tells me everything, it’s those low-functioning kids who can’t speak that everything’s happening to.’ But, it’s happening to all of our kids equally, wherever they fall on the spectrum, and the problem is the parents always think ‘Well, not my kid, it’s somebody else’s.’  No, you’ve got to think, this definitely could be my child so what do I have to do to increase his safety?

POAC continues to provide free workshops and resources to residents in New Jersey. And Gary will continue with that effort for a long time yet. “I always joke that the Irish in me wants stuff to be meat and potatoes. I want it to be real. I want it to be real for the families. I want it to be real for the officers. Any one of our trainings, I want the person to walk away with something that they can use that day to make a child safer.”

TipsForParents_4.16.14

If this story has touched you or you feel you can use it, Gary asks that you please consider making a tax-deductible donation to POAC.

POAC Logo

Our Autism Journey: One Family’s Story

April is Autism Awareness Month.  We couldn’t think of a more appropriate way to kick things off than by sharing the personal story of someone who inspires and motivates us: Debora Thivierge.  Deb is now a BCaBA, executive director and founder of The Elija Foundation.  But most importantly, she is Jason’s mom.  Her story about her journey and the steps she has taken to not only help her son but support parents and families all over is a real inspiration to all of us in the autism community.  We’re so very proud to share this exclusive article by Deb and hope it resonates with all of you who love someone on the spectrum.

Our Autism Journey

by Debora Thivierge, BCaBA


When my son Jason was diagnosed with autism at twenty months old, I was lucky enough to discover the book “Let Me Hear Your Voice” by Catherine Maurice. Her story became a beacon of hope for me; a light through the early darkness of Jason’s diagnosis. She inspired me and set me on a path to help my son, myself, my family and others on this autism journey.

Hope was a critical component of my family’s survival. The word hope is defined as “the emotional state which promotes the belief in a positive outcome related to events and circumstances in one’s life.” The opposite of hope is despair. I was determined that despair would not define my emotional state, as it would most certainly lead to detrimental outcomes for Jason.

Not only did Dr. Maurice’s personal story give me the hope I needed, but it also gave me scaffolding upon which to build my son’s treatment plan. After reading the book, I realized that there could and would be significant progress if I utilized applied behavior analysis (ABA) as my main course of treatment.

In 2002, my goal as a parent was to educate myself about autism. The more I learned, the more I recognized the need to educate other parents facing the challenges of autism. I decided to start a foundation that would provide information and resources to families and professionals on Long Island focusing on ABA and its efficacy for children with autism.

I decided to name the foundation ELIJA, an acronym for “Empowering Long Island’s Journey through Autism.” ELIJA’s mission is to bring top experts in the field of autism/applied behavior analysis here to Long Island, to give workshops and presentations where they can share their knowledge of current research and treatments, and to help families and professionals advance their skills in implementing ABA programs.

Having these presenters come from all over the country gives parents, professionals and caregivers direct access to information that they might not otherwise have access to. It also gives them the ability to become fluent in the many different tools and techniques of ABA and how to work with their children on a day-to-day basis. Over the past eleven years, the workshops have educated, inspired and instilled hope in thousands of people, including myself. It was and still is so important to me to help parents understand that their role as educator is one of the most crucial components in research outcome data.

I quickly discovered that parents were desperate for information and this kind of support. Having the ELIJA Foundation as a resource gave them an opportunity they wouldn’t have had otherwise – to obtain information directly from autism professionals actively involved in research and education.

The workshops gave parents and professionals the opportunity to network with each other informally. The setting was comfortable and inviting. We would provide lunch, so that participants could focus on meeting, talking, sharing information and experiences and, most importantly, creating lasting connections.

Parents of children with autism often feel extremely isolated, from family and friends who may not understand autism and the challenges they are facing, and from the community at large. ELIJA’s workshops gave opportunities for families to feel connected, to feel not so alone and to find shared interests with other families. When professionals, families and educators feel connected, they tend to be more effective in their implementation of plans and advocacy for the children they work with. These connections bring some measure of relief to parents, who are often exhausted due to lack of feedback and support in the community and in educational settings.

In retrospect, I look back and wonder where Jason would be today, had I not done all this intensive instructional training, and kept on top of his curriculum, especially the goals and the skills that we were teaching him. I knew his long-term outcome would be affected by our choices of what to teach him, and what not to teach him. These choices were sometimes challenging, but I was able to look at the data tables to determine that his biggest deficit was language.

I learned to change my expectations, and give and take in terms of Jason’s progress. I accepted the fact that he may never write neatly or clearly, or be able to complete a 500 piece puzzle or climb a jungle gym or run a marathon. That’s okay. Twelve years after Jason’s diagnosis, he still has autism, but I can’t even imagine where he would be today without our hope, determination, and the intensive interventions we have painstakingly implemented. Our family’s journey through autism continues.

Debora Thivierge, BCaBA, received her BA in Sociology from Hofstra University and is a Board Certified Assistant Behavior Analyst. She serves as the Executive Director and Founder of The ELIJA School and Founder of The ELIJA Foundation. Debora has volunteered her time to numerous Autism groups such as Nassau County’s Department of Health Early Intervention Coordinating Council, New York State Association of Behavior Analysis, Nassau County Autism Coalition run by the County Executive and currently serves as a board member of The Behavior Analyst Certification Board® (BACB®). For the past 13 years, she has been providing advocacy to families and conducted training workshops to promote evidence based instruction for families and educators who have been touched by Autism. She has a 15-year-old son with Autism.
 
Contact
ELIJA
11 Laurel Lane
Levittown NY 11756
(516) 216-5270
www.elija.org 
deb@elija.org

Helpful Holiday Tips for Children with Autism Spectrum Disorders

Kelly McKinnon, co-author of the invaluable book Social Skills Solutions, put this helpful post together for the Children’s Hospital of Orange County. Kelly is currently the Director of Behavior Intervention at The Center for Autism & Neurodevelopmental Disorders in Santa Ana, California.

Helpful Holiday Tips for Children with Autism Spectrum Disorders

The holiday season is a joyful time of the year, but it also can be stressful for kids with autism spectrum disorders (ASD). Preparing and planning early for the holidays can help you relieve some of the holiday stress. Here are a few helpful tips.

Provide concrete information for your child
• Provide a visual schedule of each day’s expectations. Include start times and end times.
• Use your smart phone or iPad when possible to find free apps including visual timers, “First This Then This” schedules, and personalized “social stories.”
• Explain what is both expected of your child and not expected.
• Provide opportunities to reward your child for expected behavior.

Provide information visually
• Take pictures of relatives and friends you will visit, and practice names.
• Video modeling is considered an evidenced-based way to teach your child. Take videos of how to unwrap a gift the right way, thank a family member, or greet new people. Role play with your child and practice ahead of time.
• Use pictures to help your child communicate or make choices of what they would like to have or say.

Reduce anxiety
• Compile a list of activities that can help your child fill his or her time wherever you go.
• Use rehearsal and role play to give children practice ahead of time in dealing with new social situations, or work together to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.
• If you are going to visit family or friends, make sure there is a quiet, calm place for retreat.
• Try to relax and have a good time. If you are tense, your child may sense that something isn’t right.
• Don’t shield your child from the extended family. Family members need to understand the challenges you face.

Introducing a New Support for the Child with Autism: The Acoustical Support

This week, we bring you a guest post from Martha Gabler. She’s going to share her experience with using an acoustical support to mark desired behaviors known as Teaching with Acoustical Guidance (TAGteach). The sound made by the acoustical marker (the click or ping) is sometimes referred to as a “tag.” TAGteach is based on the scientific principles of Applied Behavior Analysis and uses positive reinforcement and reinforcement schedules to build functional behaviors.

Hello. My name is Martha Gabler and I am the parent of a nonverbal teenage boy with autism. The purpose of this article is to introduce you to another type of support for children with autism that is coming into practice, and to ask you to consider it. There are many “supports” available nowadays for children with special needs. Most people are familiar with the adaptive equipment for children with physical disabilities: special chairs, grips, work platforms. In the autism community, most people are familiar with visual supports: picture systems, schedules, token boards, and so forth. These visual supports play a crucial role in educating children with autism and have proven to be extremely useful in both home and school settings.

Introducing Acoustical Support

Box ClickersI would like to introduce you to another type of support: the “acoustical” support. An acoustical support is a neutral sound: a tap, click or ping. The acoustical support plays a crucial role in delivering positive reinforcement to a learner. The purpose of the sound is to inform a learner that he has done something right. The sound says, “YES, you did it.” The instructor, therapist or parent makes the sound at the exact moment that the child has performed a desired behavior. This behavior may be pointing to a picture of a cat, putting a puzzle piece into place, or, one of those rare beautiful flashes of meaningful eye contact or comprehension. As soon as the child has performed the task and the instructor has produced the sound, the child receives a treat (reinforcer). After a few trials, the neutral sound becomes a “conditioned reinforcer.”

Why is the Conditioned Reinforcer Important?

“A conditioned reinforcer is some initially meaningless signal—a sound, a light, a motion—that is deliberately presented before or during the delivery of a reinforcer,” explains behavior scientist, Karen Pryor. After a few experiences of hearing the sound and receiving a treat (reinforcer), the sound itself becomes meaningful for the child, and he starts to watch out for it. After the child is paying attention to the sound, he starts to pay attention to the behaviors that produced the sound. When he realizes that his own behaviors are producing the sound and the reinforcer, he learns to produce those desired behaviors more often. At that point, you have learning and communication. This use of a sound to signal success to the learner is called Teaching with Acoustical Guidance or TAGteach.

As a parent, when I started using a neutral sound (a click) to indicate to my son which behaviors of his would earn treats, he started doing more of those behaviors. My son was loud, chaotic and wild in the early years. He had self-stimulatory and aggressive behaviors. With my conditioned reinforcer (sometimes referred to as an “event marker” or a “tag”), I was able to tag my child every time he did something good. “Good” things were behaviors like Quiet Mouth, Both Feet On The Floor, Hands Still, or Eye Contact. The procedure is: Observe child, press clicker (tag) when child performs the desired behavior, then reinforce child (give a treat or token).

Tantrum Busting

The first time I ever used TAGteach (acoustical support), my son had just erupted into a tantrum, complete with shrieking, stomping and storming about. I tagged every split second that he had “Quiet Mouth” or “Both Feet On The Ground, and handed him a tiny piece of candy with each click. Twelve minutes later he was sitting quietly and calmly on the sofa, and we were able to go about our day. It was an incredibly empowering experience for me, compared to all the previous tantrums when I always felt panicky, demoralized and helpless. I never feared a tantrum or meltdown again because I had a powerful tool to help him calm down.

My Son Became More Skilled and Happier the More I Tagged

The more I communicated with my son via tags and positive reinforcement, the more skills he gained and the happier and better behaved he became. Despite the lack of speech, despite the sensory issues, the click rang loud and clear and told him he had done something good. He loved it and responded beautifully. He had many difficult behaviors, but I was able to tag a split second of a good behavior whenever it occurred, with the result that the split second became two seconds, then three seconds, then four seconds of the desired behavior, plus it occurred more often. Gradually I was able to “shape” disruptive behaviors into positive learning behaviors, and he gained many useful skills.

The Tag is Clear and Precise with No Emotional Baggage

The reason the tag (conditioned reinforcer) works so well is because of the precise information it provides to the child. It tells the child, in real time, exactly what he did that was right, at exactly the moment he did it. From the viewpoint of a child with autism, he receives precise, timely information from a neutral sound; there is no emotional burden, language processing or sensory issue to deal with. Thus the child is free to focus on the priceless information he is receiving: the wonderful knowledge that he has done something right.

The Time has Come for TAGteach

The time has come for the use of acoustical supports in the autism community. There are many reasons: this methodology is based on the scientific principles of Applied Behavior Analysis; it is effective, easy to learn, easy to do and low cost. It is flexible, portable and wonderful for teaching in the natural environment. It is an invaluable tool for weary, dispirited parents, and for over-burdened instructors in the classroom.

Thank you for reading to the end of this article! In the beginning of the article I asked you to consider this method. I hope you are now interested in learning more about using acoustical supports for a child with autism. There are links below with more information. If you have questions, please contact me via the website below. Best wishes to you all.

Martha Gabler and her husband are the parents of two sons. When the younger son turned three, autism entered their lives. The method described above, using an acoustical support to mark desired behaviors, is known as Teaching with Acoustical Guidance (TAGteach). The sound made by the acoustical marker (the click or ping) is sometimes referred to as a “tag.” TAGteach is based on the scientific principles of Applied Behavior Analysis and uses positive reinforcement and reinforcement schedules to build functional behaviors. Martha’s book describing how she used TAGteach with her son is entitled Chaos to Calm: Discovering Solutions to the Everyday Problems of Living with Autism.

For more information about using acoustical supports with autism, see www.autismchaostocalm.com.

For more information about Teaching with Acoustical Guidance, see www.tagteach.com.

Music for Autism: A Guest Post by Nancy Amigron

Music for Autism

Music for Autism is a 501(c)3 organization dedicated to enhancing quality of life and raising public awareness through autism-friendly, interactive concerts developed specifically for individuals with autism and their families.

The concerts, held in the United States and the United Kingdom, feature professional musicians, including Tony Award winners, Grammy-nominated classical artists, and Pulitzer Prize winners.

To ensure equal access for all, every Music for Autism concert is fully subsidized. Families note that the concerts help fill a major psychosocial void, enabling them to enjoy enriching activities that are inclusive and to experience the joy and power of music as a family.

Each concert consists of “Concert time”, in which guest artists perform their favorite pieces for audiences who are encouraged to express their reactions to the music howsoever they choose; “Conducting time” in which audiences are encouraged to literally “conduct” the music themselves; and “Percussion time” during which instruments and small percussion instruments are distributed to allow the audience their own experience creating music!

Before each concert, we provide each family a social story to help prepare their friend or loved one for the fun that is to come, and to ensure that everyone has the best time possible! Our concerts take place in the five boroughs of New York, in Washington, DC, in Houston and in LA. The next upcoming concert we are holding will be on September 28 at the McCarton School (331 West 25th St, NYC) and will feature John Arthur Greene of Broadway’s smash hit, Matilda!

Further information on Music for Autism can be found at http://musicforautism.org/

Upcoming concert information can be found at http://musicforautism.org/concerts.php

For questions of any sort, please contact Nancy at nancy@musicforautism.org

We look forward to seeing you at a concert soon!

The Music for Autism Team

 

Using Music to Help Children with Autism: A Guest Post by Board Certified Music Therapist Ryan Judd

For those of you who don’t know him, we’re thrilled to introduce you to Ryan Judd. Ryan is a board certified music therapist with a Masters degree in Music Therapy and has been working as a music therapist with children with special needs for more than 13 years. We’re excited not only to share his wonderful wisdom with you but also to let you know that you can now incorporate his teaching techniques at home and school with The Rhythm Tree Music & DVD Package. This comprehensive package includes a DVD with 9 interactive songs that address particular skill sets, a full-length CD for listening and learning on the go, a 30-page guidebook with music and lyrics along with strategies for addressing developmental goals, and 3 sets of musical and motivating instruments so the whole family can join in. It’s this week’s pick so you can save 15% on The Rhythm Tree DVD and Music Package by applying the promotional code BLOGRHY3 at checkout.

“Using Music to Help Children with Autism”
By Ryan Judd

I am a lucky man. I get to see music touch the lives of children with autism on a daily basis. Even after 13 years of providing music therapy for children with autism, I still am amazed at the power of music and the way it can grab a child’s attention and motivate them to perform challenging tasks.

Today, I would like to share with you some ways that you can use music to motivate children with autism and help them reach developmental goals. The cool thing is that you don’t need to be a musician or even be able to sing on key in order to use music with children! Music offers so many possibilities for growth and development. I am here to help you begin to tap into this powerful medium.

Let’s look at how you can use music to help children learn social skills, and in particular, greetings. This can be challenging for some children with autism, especially when the expectation is to make eye contact when greeting a peer. If you practice greetings through a fun and engaging song, you can grab a child’s attention and help them practice this foundational social skill.

I have created a simple but effective greetings song for you that is easy to learn and easy to remember. It is to the tune of “Twinkle, Twinkle Little Star.” I changed the words, but have written the original words above these, so that you can get a better feel for the timing. So here it goes. Let’s try it!

Twinkle Twinkle little star, how I won-der what you are.
Hello, hello, hello friends, it is time to sing a-gain.

Up a-bove the world so high, like a dia-mond in the sky.
Look at a friend and say “hi.” Use your eyes and give high fives.

Twinkle Twinkle little star, how I won-der what you are
Hello, hello, hello friends, it is time to sing a-gain


To practice this song and teach it to your child, start by facing each other and holding hands while seated. Now rock back and forth or side to side while singing. This not only gives your child time with you to practice greetings, but it’s also a great way to bond with your child. Facing each other also sets you up perfectly for making eye contact. If your child is not willing to hold hands for that long, then try a patty-cake type pattern by slapping your knees with both hands and then their hands. If your child craves deep pressure, you can push firmly down on their shoulders, after slapping your knees.

In order to prompt your child to use a greeting in this song, you can use the musical tension that is created by stopping a song in the middle. For example, if you hear, “Twinkle, twinkle, little ________” your brain just wants to hear “star” if it is left out! You can use this natural tension as a non-verbal prompt by pausing before the word or action that you want your child to take. To create even more tension, take a loud, audible breath in, and hold your breath while waiting for them to respond. For our greetings song, it would look like this.

Hel-lo, hel-lo, hello friends, it is time to sing again.

Look at a friend and say ________ (big dramatic pause while waiting for your child to make eye contact and say “hi”).

Use your eyes and give high _______ (big dramatic pause while waiting for your child to make eye contact and give a “high five”).

If your child is non-verbal, no problem! You can have them wave high instead of saying it, or have a visual icon for them to select or touch. You can also set up an electronic Augmentative and Alternative (AAC) device, so that they get the auditory feedback from pushing a button and hearing a recorded voice say “hi.”

To generalize this skill when you are out and about, you can prompt your child by singing, “Look at a friend and say _____ (big pause).” This musical cue can be very effective in prompting a child to use an appropriate greeting with a peer or adult. Just make sure to be patient and give plenty of wait time!

I hope that you’ve found this article helpful and that you’ll begin to explore the potential and fun of using music with your child. Whether you are looking to build a deeper connection, or help your child learn developmental skills, music is a great source of motivation. I have a free bi-weekly newsletter that gives great suggestions and resources for using music with your child, so please sign up at http://www.therhythmtree.com/user-registration.

If you are interested in having all of the tools you need to bring the joy and benefit of music into your child’s life, check out my award-winning DVD and Music Package for Children with Special Needs. It is now for sale at Different Roads to Learning!

Remember, this week only, take 15% off your order of the Rhythm Tree DVD & Music Package by entering in BLOGRHY3 at check out!*

*This offer is valid until July 22, 2013 at 11:59 pm EST. Not compatible with any other offer. Be sure there are no spaces in the promo code at check out!

“Ability vs. Disability” by Gary Shulman

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

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.

Building Early Reading and Language Skills in Children with Autism: A Guest Post by Joan Green

This week, we’re thrilled to share a guest post by our friend and colleague, Joan Green. Joan has taught special education in California for 20 years and was even selected as the Special Education Teacher of the Year in 1997. As a member of an Autism Task Force, she co-authored a certification of competency for teaching children with autism. Based on her years of experience in the classroom, she developed a series of Interactive Reading Books designed to build language and literacy in your learners. These books have been incredibly popular over the years and we thought you all might enjoy learning a bit more about how and why they were created and how she implemented them with her students. Joan’s Interactive Reading Books are all available as this week’s Pick of the Week at a 15% discount. Just enter the promo code BLOGIRB7 at checkout.

 

I taught special education in Los Angeles schools for 20 years. In the beginning I had children with a variety of disabilities including Down syndrome, Williams Syndrome, Kabuki Syndrome and other developmental delays. During this time the students with autism were in specific autism programs and not in my class. After a few years I began teaching Early Childhood Special Education and began getting children with autism in my program.  These children are often diagnosed between 2 and 3 years of age and begin early intervention services. Once the child turns three and they begin public school it is important that teachers know the strategies that are helpful to children with autism. I began going to seminars on Teacch, Floortime, PECS, PRT, and ABA and read many books written by respected individuals who had worked with children with autism. I learned that visual strategies were very important and helpful for these children and incorporated the strategies I had learned and provided visual information throughout my classroom.

All of my students were either non-verbal or language delayed and I began using PECS (Picture Exchange Communication System) with all of my students. Picture Exchange Communication does not require that children speak; giving a picture card to someone is their communication. If, however, a child did have some speech, I wanted to hear it. If they could use one word utterances, I wanted two, if they used two words, I wanted three. I began putting sentence strips around my room that the children would bring to me to request objects or activities. All the interesting new materials were put within sight, but out of reach. On top of the cabinet could be a new truck and the sentence strip attached to the cabinet reading, “I want truck please.” Children would bring me the strip and if they had expressive language we would “read” the strip together and they would get the truck to play with. When they were done the truck would go back to the top of the cabinet. I used a Visual Schedule to help the children understand their day, what was going to be happening and if there were any changes in expected activities.

I found that when given the visual cue of a picture, the children were beginning to speak and label more than they had before. When the children began increasing their vocabulary by using pictures and sentence strips I thought to myself, “If they can read a sentence, then they can read a book. What is a book but a bunch of sentences?” and this is how the idea of Interactive Reading Books came into being.

 Children with autism are often taught using a method called Applied Behavior Analysis. There is a sequence of activities that are used to help the children acquire language where they match, identify and then label pictures. I utilized this strategy and developed a book called What Color Is It? where the children matched pictures of objects and colors, then identified and labeled them and finally they were to be sequenced into sentence order and read in sentence form. The children would practice reading the sentences with the pictures and finally read the sentences without any picture cues. Since some children with autism are good at memorization, I made put the books on rings so the sentence order could be changed to help determine if the child was reading or had memorized  the sentence order.

Using the students’ IEP goals, I began creating books that taught the skills they needed. Reading color words and number words are kindergarten goals so What Color Is It? and How Many? were two of our first books. We followed up with Things I Do At Home and I Go to School which included the vocabulary and visual schedule of activities that are performed in their home and school environments. All of the children in my class and many children in special education have speech goals on their IEP and therefore all our Interactive Reading Books were created to be helpful in reaching speech and language goals. We now have 18 titles and many cover more advanced language skills, such as idioms, functions, social behavior and more.

 

The full list of titles appears below. Remember, this week only, save 15% on all of Joan Green’s Interactive Reading Books by entering the Promo Code BLOGIRB7 at checkout.

 Action!
How Do I Feel?
How Many?
Things I Do at Home
I Go To School
What Color Is It?
Sounds Good to Me! An Interactive Reading Book with Phonucs and the Alphabet
The Ups and Downs of Opposites
What Do I Do? Appropriate School Behaviors
What Do I Say? Appropriate Social Responses
What’s It For? Function and Categorizing
Meet the Word Family
Show Me A Sign: An Interactive Reading Book About Safety Signs
What Do They Really Mean? An Interactive Reading Book About Idioms

*Offer expires on September 26, 2012 at 11:59 pm EST. Not compatible with any other offer. Be sure there are no spaces after the Promo Code when you enter it at checkout.

 

The Importance of Assessment in Treatment Planning, by Mark Sundberg, PhD

Did you know that the Different Roads’ catalog features exclusive articles by experts, parents, and teachers working with students with autism? This article by Mark Sundberg, author of the The Verbal Behavior Milestone Assessment & Placement Program (VB-MAPP), focuses on the importance of assessment in any treatment or intervention program. We’re sure you’ll find it informative!