“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.

Share Your Experience: Call for Photos

 
 
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.

 

 

 

Teaching Interactions – Strategies for Teaching Students with ASD by Autism Partnership

Teaching Interactions

 Teaching Interactions (TI’s) are another instructional format that can be invaluable in teaching children skills.  This instructional technique was developed at the University of Kansas as part of the Teaching Family Model for delinquent youth.  TI’s have several benefits as it allows for structured training of more complex, often sophisticated skills in a highly natural, interpersonal, expanded conversational format.  TI’s are designed to teach complex skills (e.g., social skills, problem solving, etc.).  They utilize shaping and reinforcement to teach a skill and rely on a task analysis format.  The teaching style is typically conversational and flexible in nature, providing the student multiple opportunities to participate in the teaching process.  Although flexible, the technique approaches teaching skills systematically, and requires planning for generalization.  Following are the 6 steps of a TI and both guidelines and considerations when utilizing this teaching technique.

 

  • Initiation & Labeling
  • Rationale
  • Demonstration
  • Practice
  • Feedback
  • Consequences

This is part of a guest series by Autism Partnership founders Ron Leaf, John McEachin and Mitchell Taubmann. Established in 1994, Autism Partnership is one of the nation’s premier agencies dedicated to providing intensive behavior intervention for children with autism and their families. They offer a comprehensive program and a variety of proven services, including in-home, in-classroom and one-on-one, as well as lectures and workshops. All programs are handled by expert staff and tailored to each individual child, family and caregiver, with the goal of helping that child achieve their best life. For more information, visit www.autismpartnership.com.

Unpacking My Suitcase and Reflecting

I’m just back from a two-week vacation in California where I spent the time with a good friend and her 22-month-old son.  Now, with a couple of days in New York City before returning to work I find myself reflecting on the time spent and the lessons revealed that could inform my work with children with special needs.  Since I have no kids of my own I spend the majority of my time with children in a work capacity with therapeutic intentions in mind.  It was fascinating and refreshing for me to just be present in the moment (as much as possible after 15 years in the field) and enjoy his company and play together.  

This rambunctious little boy reminded me of just how much variability there is from child to child when it comes to development.  He is always busy, on the move, and loves his toy vehicles.  As a child who is being raised bilingually his expressive language isn’t yet robust but he can communicate his wants and needs clearly.  Much of this variability is what we might call personality and I couldn’t help but think that perhaps in our efforts, as professionals, to facilitate development we can easily overshadow the personality and idiosyncratic interests of each child that deserve to be revered and honored.  For example, an interest in trains is sometimes just that, an interest in trains.  Dumping items on a hard wood floor so that you can hear the sound they make when they drop is sometimes what a two year old does when exploring the properties of the items in their environment.  Wanting to pretend to have a birthday party over and over again with fake candles because you just figured out the magic of what it all means is again, what a young child sometimes does in order to gain mastery over their environment and experiences.  Of course, with a typically developing child these things are of no concern as they can be with a child with autism but it reminded me that sometimes we can’t see the forest for the trees and can get lost in the details while losing valuable opportunities to connect and teach.

 I also walked away from my vacation thinking about the fact that many of my clients who are close to the same age as my friend’s child have a definite leg up on him in the academic department (all things explicitly taught by the team of course) but the things that he could do that my clients don’t do were the skills that really resonated with me.  Within a day we developed our own silly little thumbs up signal to each other as a means of connecting and building a friendship, within two days he was calling my name at the top of his voice when I wasn’t where he could find me, and when he looked at me he really looked at me with sparkles in his eyes.  These are the things that are so hard to teach but really are a core deficit of autism spectrum disorder.  I know I strive in my work to foster these skills along with cognitive skills but was reminded on vacation of just how early these skills develop and that maybe just maybe the prepositions or sequencing can sometimes wait a little bit longer.

~Stacy

Miranda and her Handbags

Everyone knows Julie, the president extraordinaire of Different Roads to Learning! For more than 16 years, she’s been sourcing new product, providing guidance and support on the phone, and helping families and organizations in the autism community. For those of you who haven’t had the privilege of talking to Julie, she’s an amazing storyteller. Every Monday morning, she has all of us in the office bent over with laughter or tears as she regales us with the stories of her weekned. As many of you know, Julie’s daughter Miranda has autism. The adventures that Julie and her family go through, the incredible highs and lows, are what inspire all of us every day. We’ve been encouraging Julie to share some of her stories as they’re what link us all together. So, here’s last weekend’s adventure….

Our daughter, Miranda, loves handbags.  She has a ton of them.  Some boys on the spectrum love trains and cars, she loves handbags and hairbands. We have actually had to build storage for her handbag collection.  I recently had to hide my handbags in the office closet to keep them out of her collection. 

 If we go to Kohl’s or to Target, she knows she gets another handbag.  She goes directly to that department. No matter how hard we try to say no, she always finds a way to get that handbag.  We go in for other things but come out with a handbag.  

The last time we went to Kohl’s, she needed a winter coat. Before we left, over and over again, I said “What are we going to get at Kohl’s?” and she said “handbag”.  I said “No, coat.”  She replied “coat”.   “What are we going to get, Miranda?”…the correct response came: “Coat.”  And we did that routine over and over again. Once in a while she would mutter “handbag” but I was on point!  “What are we going to get?”  “Coat!”

 Just before we went into the store, I reminded her of the other issue.  No screaming!

When we get inside, ”no screaming!”

 We walked into the front door of Kohl’s and Miranda is so excited and delighted to get there, she lets out a loud shriek of happiness!  The entire store goes quiet….and then a voice from Check Out #2 says “NO HANDBAGS for you today!”

Autism Moms Have Stress Similar To Combat Soldiers

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

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

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

Special Needs Talk Radio has debuted!

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

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

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

Special Needs Talk Radio

Congress To Consider Parent Financial Burden In IDEA Cases

Parents who challenge schools over a child’s IEP are currently responsible for the cost of expert witnesses in due process cases no matter if they win or lose, but a bill introduced in Congress would change that. Read more on the Disability Scoop.

Defining ‘Essential’ Care



With healthcare reform underway, this article in the Wall Street Journal highlights the differences between habilitative services and rehabilitative services and how those definitions will impact future insurance coverage. The article specifically looks at coverage for children with Autism and whether early intervention services will be covered or considered reimbursable expenses. More specifically, if services defined as habilitative are indeed covered, families would be entitled to behavioral therapy as well as speech and OT. Opponents claim that the costs would be too high. What are your thoughts on the issue?