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

We’re Making Plans for Autism Awareness Month – You Don’t Want to Miss Out!

In honor of Autism Awareness Month, we are gearing up for some exciting activities and projects for you to participate in with us.  Be sure to stay updated with our blog, Facebook, and Twitter for the new information, promotions, and fun activities we have in store all the way through the end of April!

Every week, we’ll be featuring a special guest article, promotion, interactive discussion, or contest that highlights the importance of understanding autism spectrum disorder and how it has affected our individual communities.  If you’re not yet subscribed to our emails, don’t forget to sign up for them to stay updated with all of our plans!

Join us all month long as we do our part to spread awareness on autism, and don’t forget to Light It Up Blue on April 2nd!

How Are You Lighting It Up Blue?

April is Autism Awareness Month, and we are excited to know how you are bringing awareness to your community! From our home, New York, all the way to Sydney, Australia, each April 2nd marks the day communities all around the world honor the significance of Autism Spectrum Disorder. In commemoration of the UN-sanctioned World Autism Awareness Day, many iconic landmarks, hotels, sporting venues, museums, and bridges within thousands of communities take part to Light It Up Blue, as an initiative to raise awareness about autism.

Help us spread awareness for autism by sharing with us your photos of how you’re Lighting It Up Blue on April 2nd. Send them to us on Facebook or pin them up on Pinterest and mention @DifferentRoads in the caption, or share them on Twitter with #LightItUpBlue and mentioning @Difflearn in your tweet! If you’re preparing with other ways to spread awareness, let us know, as well!

Ideas to spread awareness among your family and friends:

  • Wear blue – Incorporate blue into your outfits for the month of April, starting on April 2nd. Encourage your relatives, friends, and co-workers to do the same.
  • Light your home up blue – Get blue light bulbs for your front porch light or outdoor lights.
  • Post blue online – Share photos of Autism Awareness icons on all your social networks.

Ideas to spread awareness in schools:

  • Educate students and faculty – Hold an assembly on autism and invite an expert in the field to talk with the student body.
  • Organize a fundraiser – Seek out donations from families of students and faculty to contribute to the efforts autism-related organizations such as Autism Speaks.
  • Bake – Have a “blue bake sale” and sell baked goods decorated with blue and symbols related to autism.

For more information on the Light It Up Blue initiative and how to do your part in Autism Awareness, visit Autism Speaks.

Introducing Modified Instructions for Roll & Play

We’re excited to bring you the third installment in our new series of Modified Instructions, created by Sam Blanco, BCBA.  Sam’s Modified Instructions present 3-4 additional ways to play a mainstream game to make it most useful and accessible for our students with special needs.  These alternative instructions break down each adapted game by:

  • Age/Skill Level
  • Number of Players
  • Object
  • Skills Required
  • Materials Needed
  • Prep
  • Instructions
  • Considerations

We’re thrilled to introduce Modified Instructions for Roll & Play, one of our favorite games. This game helps reinforce patterning skills, creativity, and gross motor skill development in your student.

Roll & Play gently introduces young learners to play patterns and rules of a game through interactive activities that encourage creativity and active play. Roll the big, plush cube and identify which colored side faces up. Then, choose a matching color card and perform the simple activity shown. Players will be asked to “Make a happy face,” “Moo like a cow,” and “Find something red.” Activity cards in this game cover 6 categories related to early development: Emotions, Counting, Body Parts, Colors, Animal Sounds, and Actions. Included with the plush cube are 48 cards, 8 in each category, and 1 Parent’s Guide.

Don’t forget to download our free Modified Instructions for Roll & Play today!

Pick of the Week: The Incredible Flexible You Preschool Curriculum

Help your young  learners develop the skills they need to be flexible social thinkers and problem solvers with the brand new Incredible Flexible You Curriculum: A Social Thinking Curriculum for the Preschool and Early Elementary Years. Because Social Thinking is a thought-based approach that is explicitly taught through describing and demonstrating concrete concepts through structured play, it is best utilized with students who have the capacity to learn through language. To help you get started on the Social Thinking curriculum with your early learner, we are offering a 15% discount* on your next order of The Incredible Flexible You Curriculum set. Just use promo code DRLTIFY1 at checkout!

In this curriculum, the authors describe the social development process in easy-to-understand terms. Students will learn about the social mind, social expectations, their own thinking, and that of others, to help them make better decisions. Better yet, teachers and caregivers will learn how to explain these abstract concepts to them.

Detailed instructional lesson plans, complete with Teaching Moment specifics, motivating in-classroom structured activities, educational plan goals, and learn-at-home family letters give educators and parents the knowledge and tools they need to help young children develop better social skills.

The set consists of a 200-page curriculum manual, 5 story books, a CD, and tote bag. This curriculum is specifically for use with children ages 4-7, as it combines a social learning framework used in schools with music and dramatic play activities that appeal to early learners. Play is the learning environment of young children, and this curriculum capitalizes on this idea.

Don’t forget – you can save 15%* on your set of The Incredible Flexible You Curriculum by applying our promotional code DRLTIFY1 at checkout!

*Offer is not valid on previous purchases or with any other offer. Promo code expires on April 1, 2014 at 11:59pm ESTBe sure there are no spaces or dashes in your code at checkout!

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.


Sam Blanco, PhD, LBA, BCBA is an ABA provider for students ages 3-15 in NYC. Working in education for sixteen years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges, and she is the Senior Clinical Strategist at Chorus Software Solutions.

Pick of the Week: Snap Shots Critical Thinking Photo Cards

Promote higher-level thinking with these cards that combine critical thinking and visual literacy to teach students to look at the “big picture” as they investigate complex ideas and reach reason-based conclusions. Save 15% on your order of the Snap Shots Critical Thinking Photo Cards this week only by entering in our promotional code SNAPSH6 at checkout!

Sample

We have two beautiful sets of photo flashcards available for students in PreK and Grades 1 and up. The photos on these cards are all brain-teasing, eye-sharpening scenes that press students to look a little deeper as they develop complex ideas such as cause and effect, predicting, and making inferences. Each photo flashcard depicts a scene on the front and contains four accompanying questions on the back of each card. Over 150 prompts in each set encourage personal responses from students and help boost speaking, listening, and writing skills.

The PreK set contains photo cards that depict scenes of young children in various playtime, home, and classroom activities, such as cooking, reading, gardening, blowing out birthday candles, playing piano, and much more.

The photo cards in the Grade 1 set depict scenes of nature, as well as children and adults in various situations and settings, such as hitting a baseball, packing and moving, cooking, grocery shopping, and much more.

Remember – this week only, you can take 15%* off your purchase of one or more of the PreK and Grade 1 levels of the Snap Shots Critical Thinking Photo Cards by using code SNAPSH6 when you check out online.

*Valid through March 25, 2014 at 11:59pm EST. Not compatible with any other offer. Be sure there are no spaces or dashes in the code at checkout!

Prompting Behavior Change: A Guest Post by Steve Levinson, PhD, Inventor of the MotivAider

We’re thrilled to bring you this exclusive article written by Steve Levinson, PhD, Inventor of the incredible MotivAider. We’re all familiar with the incredible versatility of the MotivAider in facilitating behavior changes and here, Dr. Levinson explains how behavior modification works. We’re so grateful to Dr. Levinson for this fantastic article. You can find more exclusive articles from leading experts in the field in our new catalog.

Prompting Behavior Change by Steve Levinson, PhD

If you’re a parent or a teacher who’s trying to change a child’s behavior, you’re probably frustrated. It’s not easy to change a child’s behavior. But before you blame the child, consider this: It’s not all that easy to change your own behavior either! Even when you have a good reason to make a particular change, and you’re really serious about doing it, changing your own behavior is rarely a snap.

Why it’s so hard to change behavior  So, what makes it so hard to change behavior? If you think it’s simply a matter of motivation, think again. Motivation is certainly important, but many behavior change attempts fail not because of insufficient motivation. They fail because of insufficient focus.

You can’t change your own behavior unless you can keep your attention focused on making the desired change. While it’s easy to do things the old way because the old way is automatic, doing things the new way requires focus.

Unfortunately, whether you’re a parent, a teacher or a child, it’s not easy to stay focused. That’s because, amazingly, the human mind has no built-in mechanism to keep our attention focused on making the changes we want to make. So it’s really no wonder that our good intentions keep getting lost in the shuffle.

If you’re not convinced that (1) focus is an essential ingredient in the recipe for behavior change and (2) we’re not well-equipped to stay focused on the changes we want to make, here’s an example that should help. Suppose you have a bad habit of slouching. You realize that slouching is not only bad for your back, it’s bad for your image. So you promise yourself that from now on that you’ll sit up straight and stand up tall. How hard could that be? Yet soon—very soon—after setting out to improve your posture, you’re right back to slouching.

So, what happened? Did you lose your motivation? No. You lost your focus! You failed to make a change you genuinely wanted to make because you simply couldn’t keep your attention focused on making it.Yes, it’s hard to change behavior because changing behavior requires focus, and none of us—not parents, not teachers and especially not children—are particularly well-equipped to stay focused.

So what can we do to stay more focused on the positive changes we want to make? And what can we do to help our children or our students stay focused on the positive changes they want to make?

Prompting: A simple way to facilitate behavior change  One solution is to use “prompting.” Prompting is a simple behavior change method that uses frequently repeated signals to keep your attention focused on making a desired change.

To illustrate how and why prompting works, let’s return to the posture example we used earlier. Only this time, after you promise yourself that you’ll sit up straight and stand up tall from now on, I’m going to follow you around and every few minutes—whether you’re slouching or not—tap you on the shoulder and whisper in your ear, “You’re no slouch.”

With me reminding you frequently, I guarantee that you’ll stay focused on improving your posture. What’s more, soon I’ll be able to stop whispering because just feeling the tap on your shoulder will be all it takes to send you the associated message, “Yes, I’m no slouch.” Sometimes when you feel the tap, you’ll find yourself slouching, and you’ll straighten up right away. Other times when you feel the tap, you’ll notice that your posture is already fine. It doesn’t matter whether you catch yourself slouching or you catch yourself with perfect posture. Either way, you’ll be making progress in replacing your bad posture habit with a good posture habit. Before long, you’ll automatically be sitting up straight and standing up tall.

Fortunately, there’s a more practical and even more effective way to use prompting. Instead of relying on a dedicated person to follow you around and keep tapping you on the shoulder, all you really need to implement basic prompting is a timer or other mechanical or electronic means that’s capable of sending you frequent private signals automatically. The process is simple. First, you devise a brief personal message that urges you to make the change you want to make. Then, you associate the personal message with the signal—the same way we associated “You’re no slouch” with a tap on the shoulder in the example above. The result is that whenever you receive the signal, you’ll focus your attention on making the change you want to make. And by making certain that you receive signals often enough, you’ll stay focused.

Prompting isn’t magic, but it can do amazing things. What’s more, because it allows us to overcome an obstacle that all of us—parents, teachers and children—share, it’s remarkably versatile. The same simple method that can be used to help a young child do a better job of staying on task can also be used to help parents and teachers consistently stick to an effective technique they forget to use when they’re busy or frustrated. The same simple method that can be used to help a child make a constructive keystone change in her social behavior can also be used to help parents and teachers stay cool, calm, collected, and constructive when interacting with a defiant child.

Pick of the Week: Circle Time Learning Activity

Teach math skills in an active way! Sharpen early math skills, along with shape, number, and color recognition through a variety of kinesthetic games with the All Around Learning Circle Time Activity Set. Gathering for circle time has never been so much fun. This week only, save 15% on your order of the All Around Learning Circle Time Activity Set by entering in promo code ALLCRC7 at checkout.

Circle Time Set

Learning through play will help encourage gross motor skill development and group cooperation skills, as well as increase self-esteem and positive attitudes in your students. This set includes: one lightweight, wipe-clean vinyl mat that measures 4 feet in diameter and folds easily for storage; five inflatable cubes (5 inches each); five canvas bean bags in red, orange, yellow, green, and blue (3 inches each); and an Activity Guide that offers suggestions for activities, such as Color Find, Circle Around the Colors, Number Line-Up, Number Toss, and more. This circle time mat is a wonderful addition to the classroom and in the home for more structured learning.

Don’t forget – this week only, you can take 15% off your order of the All Around Learning Circle Time Activity Set by using code ALLCRC7 when you check out!

Petition to Change Early Intervention Services in NY

This petition sponsored by the New York State Speech-Language-Hearing Association,
NY Physical Therapy Association, and NYS Occupational Therapy Association is trying to change Early Intervention laws in the state. According to the petition on change.org, as of April, 2013, NYS made significant administrative changes to the Early Intervention Program (a program for special needs children from birth to 3 yrs of age) making it extremely difficult for children born with developmental delays to continue to receive much-needed therapies that can compensate for their issues, allowing them to thrive and grow to their full potential. You can sign your name to the petition here.

Research has proven that the potential for change in a child’s nervous system within the first three years of life is greater than at any other time in development. Many developmental issues can be resolved with early therapy, resulting in children entering kindergarten with minimal or no need for extra support and eventually becoming contributing members of our adult workforce. Research has also proven that for every $1 spent on early intervention, $7 to $17 is saved in the future!

Passing proposed legislation, S6002/A8316, will assure that infants and toddlers with developmental issues continue to receive critical services from experienced providers in a timely manner. Specially trained pediatric speech-language pathologists, physical and occupational therapists, and special educators will be able to provide services free from the administrative chaos that is currently crippling the Early Intervention Program and forcing providers to leave. Half (49.5%) of the 96 surveyed agencies indicated that they are planning to reduce or close their EI programs.

Sign your name and ask that NY state Senators, Assembly Members and the Governor do what’s right for children by voting YES to pass bills S6002/A8316 without delay!