Forging New Pathways : parenting, RDI Consultant

Cooking Our Way through RDI By Gabrielle Kaplan-Mayer

Lisa Palasti — Sun, 22 Aug 2010 21:49:00 GMT

We are pleased to share this week's blog article with you all from an RDI parent, Gabrielle Kaplan Mayer. Gabrielle shares her discoveries as she learns how to help her child through her own passion and love of cooking. Bon appétit!

My son George, seven, was formally diagnosed with ASD when he was three years old and after researching cognitive and behavior therapies, my husband and I quickly decided to give RDI a try. What appealed to us most about RDI was the hope that we, as parents, could learn how to communicate and engage with our son. When we first began our RDI program, shortly after George's fourth birthday, our days were filled with the chaos of George's frequent meltdowns and outbursts. At that same time, I had also decided to give the gluten-free/casein-free (GFCF) diet a try since George's digestion was very sensitive and he was self-limiting to very few foods.

Though the diet was in no way a "cure" for George's autism, we were delighted to find that only weeks after making the switch, his digestion had improved and he began to eat more foods including fruits and vegetables, which he had previously rejected. I was somewhat overwhelmed with learning how to cook without gluten, but working professionally as a cooking instructor, I felt open to the challenge.

What never ever occurred to me was the idea that I might venture into my GFCF cooking exploration with George. However, one of the first activities that our RDI consultant, Jennifer Paget, engaged George in was cooking. During George's first RDA, they made edible gluten-free playdough together. I was amazed to see how much George enjoyed cooking with Jennifer and how his attention-which usually lasted less than 5 minutes per activity-stayed with her while they dumped, poured and stirred.

After witnessing what felt like a small victory, I started cooking with George at home, and I realized that cooking provided a great opportunity for George and me to connect and work on our RDI objectives. I began experimenting with cooking techniques, recipes and how to frame the kitchen process into one in which George and I both felt competent working together. This November, I am delighted to share my book The Kitchen Classroom (Woodbine House), which is full of step-by-step recipes with photos for children and cooking strategies that I have developed from an RDI perspective. You can check out The Kitchen Classroom at www.woodbinehouse.com or at my sight, www.kitchenclassroom4kids.com.

To give you a sense of what I mean by cooking from an RDI perspective, I want to share some of the topics that I explore in The Kitchen Classroom. They include:

Cooking as a Shared Experience: Making time in our busy lives to slow down and prepare food together can strengthen our relationships with our children. All RDI parents know how essential it is to create the opportunities for shared experiences. Cooking doesn't have to be something that takes hours of your time. At the end of my children's school day and my work day, we might do something simple together like make a fruit salad. But the time spent collaborating together helps us to bond and connect.

Framing Your Cooking Activities: Part of what worked so well when Jennifer first started cooking with George was that she had created a neat, orderly environment for them to work in. In my home, where the kitchen counters get cluttered, I need to stop and create that orderly space for us to work before we begin. Framing includes thinking through the entire process of cooking from prep to clean-up to create a successful experience for both you and your child.

Creating a Role for You and Your Child (ren): What I have enjoyed most about cooking with George has been witnessing the way his roles have grown and expanded since we first started cooking together. At first his job may have simply been to stir a batter. Now there are many steps that he can do on his own and in a co-regulated way with me. Cooking is an opportunity to share roles: one of you might hold the bowl while another person stirs and then both partners can switch.

I hope that I have wetted your appetite for cooking with your child!

Check out The Kitchen Classroom and visit me at www.kitchenclassroom4kids.com.

Parenting - Putting On Your Own Oxygen Mask First

Lisa Palasti — Thu, 29 Jul 2010 13:40:00 GMT

Guest author, Laura Hynes, shares this blog about how vitally important it is for parents to take care of themselves and their surrounding relationships so they can take better care of their child with ASD. Have you ever heard the old saying "You can't be good to anyone else if your not good to yourself first?" Laura makes a really good case for parents need to put on their own oxygen mask first. I have a plaque in my office that says "If Momma ain't happy, ain't NOBODY happy". It's a favorite saying of mine that dates back to my great grandmother Mama Mai. She was one smart lady! This goes for Daddy's too! So take time for yourself parents, refresh, refuel and re-energize. As you read Laura's article, take it one step further and plan to do something special for you this week.

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If you've ever been on a plane, you have heard the flight attendants tell you that if you are seated next to someone who might need some assistance, such as a child, an individual with limited physical or mental capabilities you should put your own mask on first, then assist the other person.

Can you relate this rule to your family and your child with a disability? This is a rule of thumb that parents of children with autism and other disabilities should apply to their day to day lives. Unfortunately, in the hectic schedule of families that have a child with a disability, this is something that is often overlooked or deemed unimportant. It is, however, a critical component to your family’s and your child’s wellbeing.

School, therapies, social groups, evaluations, and doctor's appointments take up a tremendous amount of your time. Thoughts and worries about your child and his or her future may be the only things that occupy even more of your time. The shuffling around and chronic stress of worrying what the future will bring often results in parents not taking time for themselves, the other members of their family or their marriage.

There is a disagreement among researchers about the divorce rates of couples raising a child with autism and other disabilities. Some state that the rate is the same as the national average and some note numbers as high as 80%. There is no discrepancy, however in the research that parenting a child with special needs increases stress levels on both parents. Chronic stress can have a debilitating effect on a person. Depression, anxiety and lower immune function are a few of the results that will occur if parents under chronic stress do not take care of themselves.

When was the last time you did something alone, for yourself? Read a book that had nothing to do with your child’s disability? How about spending time with your spouse? Try to remember what you and your spouse talked about before you had a child with a disability. What did you enjoy doing together? What made you laugh? To best take care of your child, you must take care of yourself. You can do that by reconnecting with your spouse and with yourself.

When you have a child with a disability, it's easier sometimes to just focus on the "doing" and it can be hard to slow down. Slowing down and taking time for yourself when you are not trying to solve all of your child’s problems often means dealing with your own feelings of fear and guilt. It can be easier to just keep moving because dealing with those things can be difficult and painful. To continue on this path, however, is to allow those things to slowly chip away at your physical, emotional and spiritual well-being. Stop and think, are you burning the candle at both ends? Sometimes we need to slow down to move forward.

How are you other children fairing? I had a father recently ask me if it was ok that he wanted to do something alone with his neuro-typical son. He was admittedly feeling guilty about wanting to do things with his son that his daughter with autism was unable to participate in. Not only is it ok, it is critical for your child without a disability to have quality, uninterrupted time with you. Without this time with parents, siblings often appear as if everything is ok, but are surely experiencing inner turmoil. Siblings often have feelings of jealousy, embarrassment, anger and even resentment, coupled with a tremendous amount of guilt due to these feelings.

An RDI® program is a unique approach to treating autism and other developmental disabilities in that it treats not only the person with the disability but recognizes the effect that the entire family is profoundly affected by the disorder. Your RDI® consultant will help you look at the needs of all of your family members and put into place a plan to normalize family life. An RDI® approach values you, the parent as the most important and influential person in your child’s life. You will look at your family’s schedule and prioritize the weekly activities that you and your child are engaged in. Your consultant will help you to understand that “more” is not always “more.” You will identify opportunities for quality time to spend with your child with a disability as well as your other children, yourself and your spouse, improving your entire family’s quality of life.

Parenting is hard. Parenting a child with a disability is incredibly hard. It is not only ok to take time for yourself, it is critical. It will most definitely help you become a better parent. Your child with autism or other disability is a priority. You must however, take care of yourself and the relationships around your child.

Who will help your child with their oxygen mask if you are suffocating?

Laura Hynes, LMSW

RDI® Program Certified Consultant

Extraordinary Minds, Inc.

308 Forest Avenue

Staten Island, New York 10301

(347)564-8451

L.Hynes@yahoo.com

www.extraordinaryminds.org

Montana's Story: Perspective from a Young Adult

Carlotta Baird — Fri, 04 Jun 2010 15:22:00 GMT

In this week's blog post, guest author and RDI Program Certified Consultant, Dema Stout, MA talks about working with Montana and his family. The inspiring video included in this post is Montana's story as told from his own perspective.

The video which accompanies this blog was put together by Montana and Rana Burr for a workshop I did recently in San Antonio. They had previously planned to be there to answer questions, but found they would be out of town on the promised day…so, to make up for having to break their “promise” they put together this video for me to show. It turned out so great that we thought others would like to see it.

(Please visit the site to view this media)

Here is a bit of background info:

As a relatively new Certified Consultant in 2008, I was excited to receive a call from a veteran* RDI mom whose family had recently relocated to San Antonio. (*Parents who have been working with the RDI Program for a while are often called veteran parents.) She told me that she had been working with a great Consultant, Michelle Broeckelmann, in a distance relationship but thought that since there was a Certified Consultant in San Antonio perhaps we should meet. We wanted to see if it would be a good idea to transfer so they could have some in person sessions. Plus, there is some funding here, and it appeared her family would qualify!

Michelle told me this family is a joy. What an understatement. The first time I actually met Rana, the mom, she came to our monthly Parent Support meeting, and the other parents were naturally enthralled as she talked about her son, Montana, and the progress they had made over the past three years.

Happily, we decided that we were a good fit. During the next few months we completed an RDA and developed a rhythm of working together. We meet sometimes in person, but more often over Skype….and both Rana and Montana attend the meetings. They are so consistent about doing their videos on assigned objectives and you can tell from the video clip they put together that they are totally receptive to receiving feedback.

In fact, this is one really outstanding quality about working together…Rana is very thoughtful about the videos they do and her analysis is usually right on but often, there is more I’m able to suggest to her. The three of us then discuss my feedback and decide together how to apply it and when to move on to another objective. Which objective to choose is a group decision as well. Montana usually has a good feel for what he needs more work on, but even if he disagrees, he is willing to go along with mom’s plan to frame something and maybe take it a bit further in daily life.

Montana is working on his Eagle Scout badge and he and Rana are also working on home internet marketing endeavors. I can hardly wait to see what this team will come up with next. Thanks to both of them for showing the progress their family has made through RDI.

Dema Stout, MA
Certified RDI Consultant

Synergy Solutions
San Antonio, TX 78239
Phone: 210.748.2481
Email: dema@synergycoach.com

Helping Your Child Become A Competent Communicator

Guest Author — Tue, 11 May 2010 21:20:00 GMT

This week's guest author, Laura DeAngelo, A.B., M.B.A., writes about avoiding the overcompensation trap when helping your child become a competent communicator.

THE OVERCOMPENSATION TRAP

Many parents of children with autism unknowingly overcompensate for their child's deficits in communication competence. Often parents (and other communication partners), without consciously realizing, do most of the "work" in keeping the social exchange going. The child may initiate communication, but walk away without waiting for a response. The parent will then follow the child around in an attempt to keep the communication going. Or, the child may speak, but not be oriented toward the partner. The parent may then move his body or face toward the child in order to maintain the social connection. Parents who have challenges “getting a response” from their child may frequently prompt the child for language, believing that prompting for a response is the "only way" to have a relationship with their child. Parents may also believe that, given enough prompting, their child will “eventually” learn to have a typical conversation without prompting. Alternatively, parents may continually try to adapt to the child’s interests or agenda in an effort to establish or maintain a social connection.

Parents, think again! In continually adapting to your child or being overly directive with him, you are reinforcing his feeling that other people will do most of the "work" in the communication exchange - either by directing the exchange for him or by adapting to him. You are promoting the idea of a social exchange as a controlled or controlling encounter by one partner or the other. You are in what I call the "overcompensation trap."

GETTING OUT OF THE "TRAP"

There are many things that you, the parent, can do to start getting out of the overcompensation trap and help your child learn to do more of the "work" in communicating. Here are a few:

1. THINK about how much work you vs. the child are doing in initiating communication or keeping the communication going. You may come to the conclusion that you are doing most or all the work. This revelation is empowering in itself. It should lead you to ask: How can I help my child to take on more of the responsibility in the communication exchange?

True social communication, after all, is a balanced exchange, with both partners doing more or less an equal share in keeping the exchange going and adapting to each other's topical agenda and emotional state. In a real-life social situation, each partner is continuously adapting to the mental state and needs of the social partner(s), while being mindful of his own mental state and needs. The social encounter that unfolds represents something completely novel, borne of out of this continuous mutual adaptation. Such mutual adjustment is referred to as social "coregulation." In autism, coregulation often is lacking due to the child's difficulties with adapting to the needs and mental state of the social partner. Thus, the social encounter is often one-sided, and the result is often based on the agenda of the parent only, or the child only, but not both together.

For more reading about coregulation, parents are encouraged to read Alan Fogel's book "Developing Through Relationships," one of the works that inspired the RDI® Program. The book may be purchased through the www.rdiconnect.com store.

2. SLOW DOWN to think and to let your child think. Parents sometimes believe that prompting or maintaining a lot of language is the key to their child's progress. This is not the case if the language is not the result of productive thought or "mindfulness." True social communication involves thinking and responding flexibly within social exchanges which, in most cases, don't involve direct prompts. It is important for parents to build the child's competence in flexible and creative thinking during social exchanges, not merely building proficiency in responding to prompted language or using social scripts. Slowing down the pace of your communication and waiting before you speak or respond to the child's communication will allow you time to think about the encounter, moment to moment, and will allow your child critical time to think and problem solve under your guidance.

3. REQUIRE MORE than just words in the communication exchange. Some parents accept a communication exchange that is solely language based. They may talk at the back of the child's head or accept a communication exchange with a child who is running away, bouncing around the room, or climbing all over the parent. Parents who accept such limited exchanges may feel that their child can never be competent with true social communication, which involves many "channels" of communication used simultaneously. These channels include not only language, but also facial communication, vocal prosody, gestures, body language, personal space, etc.

EXPERIENCE OF AN RDI PARENT

In addition to being an RDI Program Certified Consultant, I am a parent of a child on the autism spectrum. Our family has been involved in an RDI program for about five years. So how do I make sure that I am not falling into the overcompensation trap myself? I have learned to raise the bar in my mind as to what my son's potential is in communication competence. I have learned to create and spot opportunities for my son to be challenged to be a better communicator. I focus on his thought process through the encounter. And afterwards, I replay the incident in my mind to assess: What did I learn? What did HE learn?

Let me give an example of a situation I have encountered in the past with my son:

Matt begins to talk to me, face to face, and then walks away from me into another room while continuing to talk.

I am tempted to follow him to hear what he is saying. I am also tempted to prompt him to come back into the room. But I stop myself. I think about the concept of communicative balance and partners having equal responsibility to maintain interactions and repair breakdowns. I think: Whoa! He is disconnecting from me facially and physically. He is causing a breakdown in our communication exchange. So, I must not overcompensate. I must let him REPAIR this disconnection. I WILL NOT do it for him.

I realize that there is a Stage 3 RDI® child objective that addresses this very issue. The objective relates to the child’s understanding that communication partners must be both physically and mentally available in the communication exchange in order for the exchange to be effective. This is a mental discovery that a typical child makes by the time he or she is three years old.

What do I do to scaffold or assist my son in making this discovery? For the moment, I do NOTHING. I just stand there, silently, rooted to the spot. And I wait. I am intending to create a situation of PRODUCTIVE UNCERTAINTY for him, a state of consciousness in which he feels a mental tension and is challenged to respond in a flexible manner, but not obligated to do so.

Within about twenty seconds, he feels the uncertainty. He realizes that he is talking at the air; his communication partner is no longer within range. The communication exchange has broken down. So he must make a decision. If he wants to repair the communication, he must do the work. He must seek me out.

He does. He walks back to me. He continues talking. I say nothing. I let him finish. I wait to make sure he is attending me. Then I say "I missed the part where you walked away from me." Again, he experiences productive uncertainty. What should he do? He has to decide. If he wants to repair the communication exchange, he has to figure out what part I missed and repeat it. But he is not forced to. He is free to say "Oh, that's too bad!" and walk away if he wants to! He is free to respond any way he wishes. My only requirement is that he processes and thinks about MY communication to him.

He chooses to repeat the part of his story I missed, and the conversation continues. I do not praise him for anything he said or did. We just keep talking. (At times I may praise him for his accomplishments. I don’t praise his behavior; rather, I spotlight (emphasize) his competence as a thinker.)

In the above example, I first needed to be mindful about my own thought process and actions, in order to allow my son to make new mental discoveries. I needed to think about the three principles above. I needed to keep myself from falling into the overcompensation trap.

What did my son learn based on my thoughtful responses to his behavior? With the deliberate scaffolding from me, he learned that he can recognize and successfully repair communication breakdowns without being directly prompted to do so. He demonstrated a step toward greater competence as a communicator.

NEXT STEPS FOR PARENTS

Any parent can do what I do. However, for most, it takes effort to learn to recognize and make use of learning opportunities throughout daily life with your child. In many cases parents need to “retrain” their brains to stop thinking about task completion and behaviors as end goals and to think instead about the child’s mental processes. This is where RDI® Program certified consultants come in. RDI® consultants guide parents in the process of retraining their own brains so that they can be effective guides to their child’s cognitive development. RDI® consultants help parents become aware of the areas in which they may be overcompensating for their child's communication deficits. Consultants train parents in the level of support or scaffolding that provides optimal learning opportunities for their child. Consultants also train parents in ways to frame or structure guided learning situations so as to minimize distractions and maximize the chance for new mental processes to develop. Finally, consultants teach parents how to identify and "spotlight" key learning moments so that the new mental discovery and feeling of competence will be captured in the child's memory.

My son is quite a competent communicator now (although he has not always been!) and needs minimal framing, scaffolding and spotlighting. Most children, however, would need higher levels of support for optimal learning. RDI® consultants customize parent training to account for the level of support the child needs at any point in time for successful cognitive development.

Parents do not have to be stuck in the overcompensation trap any longer! Changing the approach to the way you interact with your child can make all the difference in his or her mental development and long-term outcome. If you would like to be empowered to make such a difference for your child, contact an RDI® Program Certified Consultant for more information about The RDI® Program for autism remediation. See www.rdiconnect.com for list of consultants by area. Long-distance consulting is also available for families in areas with no local consultant.

ABOUT LAURA DEANGELO:

Ms. DeAngelo received her A.B in economics from Dartmouth College and her Master’s in Business Administration with a concentration in Health Care Administration from the Wharton School of the University of Pennsylvania. She had a successful career in management consulting and hospital management until, in 2002, she discovered that her then-2-year-old son had autism. Ms. DeAngelo left the workforce for five years to advocate full-time for her son. She succeeded in advocating for changes in his school program that resulted in an increased rate of progress in his core problem areas. She investigated many interventions over the years. When she learned about Relationship Development Intervention® (RDI®), she felt that this was the only intervention that directly addressed what she had known all along was the core deficit area with her son. The DeAngelo family began an RDI® program in 2005. The effect on the quality of life for her son and for the family as a whole since then has been remarkable. The boy who used to be aloof, speak in scripted phrased, and have frequent tantrums, now is engaging, flexible, funny, creative, conversational. The stress level for the family as a whole has been greatly reduced, and Ms. DeAngelo and her husband feel much more competent in parenting their son. Ms. DeAngelo’s passion about RDI propelled her to begin her training to become certified as an RDI® consultant. She is thrilled to have the opportunity to help other parents learn to be competent guides to their children in remediating the core deficits of their autism. Keep up with Laura on her blog, Parenting the RDI Way.

Laure DeAngelo, A.B., M.B.A.
Autism Family Services, L.L.C.
152 Simsbury Road, Building 9
Avon, CT 06001
Phone: 860.966.6786
Email: deangelo@autismfamilyservices.com
Website: www.autismfamilyservices.com

What is RDI?

Guest Author — Mon, 19 Apr 2010 16:40:00 GMT

A Brief Description of the RDI® Program by Guest Author and RDI Program Certified Consultant, Nicole Beurkens, M.Ed.

I often get questions from parents interested in knowing how my colleagues and I approach the treatment of autism and other neurodevelopmental conditions. I thought it would be helpful to start answering those inquiries in this format, as some of you may have similar questions. Here I will address: What is the Relationship Development Intervention (RDI)® Program?

When beginning to understand RDI®, it is helpful to set aside any previous information you have about treatment programs. My rationale for this suggestion stems from the fact that it is difficult to fit a new concept into something we have already established in our minds. RDI is a unique and different model, and I encourage you to explore the information outside the boundaries of what you currently conceptualize as “treatment.”

The RDI Program is based on a large body of research from the fields of human development, neurology, and neurodevelopmental disorders (including autism). Dr. Steven Gutstein and Dr. Rachelle Sheely, the founders of RDI, have spent years studying and organizing the research literature in those areas to develop a comprehensive, research-based approach to neurodevelopmental disabilities that is based on what we know about how humans develop. By incorporating an understanding of how the brain functions, the typical sequence of development from birth through the lifespan, and the neurological and developmental problems that occur in autism and other related disabilities, they have been able to design an approach that addresses the core deficits of these disorders in ways that promote more typical pathways of development. Because it is based on the most current research in these areas, the RDI model evolves over time as research sheds new light on our understanding of these issues. This is critical, because it means that RDI as a treatment approach remains on the cutting edge of what we know about these disorders.

RDI is about restoring the guided participation relationship between parent and child in order to promote the development of thinking and relating. Guided participation describes the relationship that is established between parent and child early in infancy and continues throughout childhood and adolescence. The basic essence of guided participation is that the parent is in a continual role of guiding the child to learn about and understand themselves, others, and the world around them. The child is in the role of soaking up the parental guidance, thereby learning to think, communicate, and relate to others. RDI helps parents learn how to establish a solid guided participation relationship with their child, which is the foundation from which all future learning and development occurs. This begins with a thorough assessment of the parent-child relationship in order to determine where breakdowns are occurring in the guided participation relationship. A plan is developed to strengthen the relationship, and give parents the tools to repair breakdowns that occur.

Once the guided participation relationship is well established between parents and child, the focus turns to the child’s specific developmental deficits. RDI utilizes a comprehensive set of developmentally sequenced objectives that represent all aspects of human development from birth through adolescence. The objectives encompass areas of development such as abstract thinking, self-awareness, communication, behavioral and emotional regulation, friendships, problem solving, collaboration, academic learning, and many others. A thorough assessment process identifies the developmental gaps for each particular child, and a plan is developed for addressing the objectives for each specific area that requires attention. This often entails going back to early developmental stages in order to address core issues that are impeding a child’s ability to function.

The RDI approach focuses on remediation of deficits, rather than compensating for them. This means that we tackle the underlying deficits that prevent individuals from thinking, communicating, and relating in meaningful ways. [For more information on the concept of remediation, I will be covering that topic in a future post.] Another way to think about this is that we are focused on developing dynamic intelligence, which includes the thought processes and abilities needed to engage with the constantly changing world in which we live. We address the obstacles to development so that they no longer create barriers for the individual and family. This stands in stark contrast to treatment approaches that focus on acquisition of rote skills, academic learning, and other areas that correlate to the strengths of people on the spectrum but fail to impact their deficits.

RDI Program Certified Consultants are the professionals trained to guide families through the remediation process of RDI. Consultants conduct periodic assessments to determine starting points, measure progress, and identify obstacles along the way. They also work closely with parents by providing education, strategies, and feedback as the guided participation relationship is developed and child objectives are addressed. Just as the child is in a guided participation role with parents, the parents are in a guided participation role with their consultant. The goal of the consultant is to help parents reclaim their role as the most important guide in the child’s life, and to assist them in developing the skills and mindset necessary to make the most of moments with their child throughout the day. RDI does not comprise a specific set of activities, done in a specific place, and for a specific amount of time. It is a way of life that permeates every interaction with the child, and typically with other family members as well. Parents learn how to approach their child and provide opportunities for thinking, communicating, and relating in ways that promote optimal growth and development.

There is much more to say about RDI as a treatment approach, but the purpose of this article is to give you a basic overview. You now have an initial framework for understanding the main elements of RDI and the innovative approach to treatment of neurodevelopmental disorders it provides. Perhaps the most concise way to summarize RDI is to say it is a research-based, parent led program to correct the core problems that create obstacles in the lives of individuals with autism and other neurodevelopmental disorders. Parents interested in this approach are encouraged to contact an RDI Program Certified Consultant to get more information and discuss specific family needs.

Autism specialist Nicole Beurkens, founder and director of the Horizons Developmental Remediation Center, provides practical information and advice for families living with autism and other developmental disabilities. If you are ready to reduce your stress level, enrich your child’s development, and improve your family’s quality of life, get your FREE resources now at www.horizonsdrc.com.

The World is Her Oyster

Carlotta Baird — Fri, 09 Apr 2010 18:45:00 GMT

Guest Author: Sharon Bradbrook-Armit, Parent and RDI® Program Certified Consultant. This week Sharon Bradbrook-Armit shares her family's story; from the diagnosis of her daughter to her decision to become an RDI Consultant.

I’m a Mum of a teenage daughter and back at the beginning of 2004 came across the Relationship Development Intervention Program (RDI®). At that time I would have described my daughter as: being totally prompt dependent, although being able to talk she didn’t communicate or see the need to do so, lots of self-stimulatory behaviour, cocooned in her own world. As a family we flew out to the US so that we could attend one of Dr. Gutstein’s 4-Day Parent Workshops and then meet up with our potential RDI® Consultant.

After the second day of the Parent Workshop we started to implement some of the RDI strategies, mainly changing our communication style and were stunned at how very small changes could have such a positive impact. Simply by using Declarative statements (“I love the colour of that’, ‘I’d like to go to...” etc.) and not using Imperative statements (“Do you like that colour?”, “Where should we go?” etc.) the pressure was taken off her to respond in a certain way and she actually began to converse.

Our lives as a family have changed dramatically. My daughter will come in from school and talk about her day, she will ask about my day out of genuine curiosity, we converse, we interact, she chooses to be with us and join in with things that the rest of the family are doing.

We are on the road to remediation of her autism.

*Click here to watch the video of the detailed version of their incredible story.*

If the video seems to stop and start, wait until the video has completely loaded before watching it.

That was the beginning of my personal RDI® journey, and my quest to help make RDI® an intervention that is known about and taken seriously in the UK. In February 2005 I presented a ‘Parent’s Viewpoint’ at a conference in Reading and applied to Dr. Sheely at the Connection Center to enter into the RDI® Certification process, so that I could help other families to achieve and benefit in the same manner as my own family. I have now completed the Certification process and am currently working with families in the UK.

To learn more about Sharon's work as an RDI Consultant with her families, click to read her article "The RDI Payoffs" (reprinted with permission) that originally appeared in Issue 27 of The Autism File. To purchase back issues of this magazine or become a subscriber, please visit their website, www.autismfile.com.

To contact Sharon....

Sharon Bradbrook-Armit

RDI® Program Certified Consultant

Thinking in Shades of Grey Ltd

Tisog@btinternet.com

*Editor's Note: I am so appreciative that Chris and Sharon were willing to create this home video for us. They did a fantastic job of sharing their personal story in such an authentic way while speaking only to a video camera. Thank you so much!

Autism and Seizures: Tests and Treatment (Part 2 and 3)

Carlotta Baird — Mon, 05 Apr 2010 15:30:00 GMT

Guest Author: Laurel Joss, M.A, EcEd, RDI® Program Certified Consultant

Part 2: The Tests.

If you think your child might be suffering from seizures, there are two tests that can help you get a diagnosis. The first is an EEG (electroencephalogram), and the second is the brain SPECT (single photon emission computed tomography).

EEG (electroencephalogram)

An EEG is a procedure in which small metal discs are glued to one’s head in order to detect electrical activity in the brain. Some EEG’s are 24-hours, with or without video monitoring for the full amount of time. These may be done in the hospital, or on an out-patient basis with the equipment attached at a medical facility and brought home by the patient for the duration of the test. Sometimes your doctor might order a sleep-deprived EEG, in which you will be asked to keep your child awake for most of the night prior to the test. These EEG’s are shorter in duration, generally about an hour. The results of an EEG will show obvious seizure activity, but some focal seizures are deep within the brain, and are not picked up by an EEG. This was the case with my son. When his EEG came back clear, but he showed regression over the following months, we decided to have a brain SPECT.

Brain SPECT (Single Photon Emission Computed Tomography)

A SPECT scan shows how the blood flows through the arteries and veins in the brain. Your doctor can see which areas of the brain are getting less blood flow, which helps to pinpoint the exact spot in the brain where seizure activity is occurring. This test can detect seizure activity deep inside the brain that an EEG can miss. To prepare for the scan, your child will be injected with a radiolabled chemical which emits gamma rays that can be detected by the scanner. The computer can detect these rays and use them to create two-dimensional cross-section images of the brain, which can then be added back together to form a three-dimensional image. The chemical takes approximately 20 minutes to reach the patient’s brain. Once this occurs, the patient lays down on a table while the scanner rotates around his head. It is important that the patient remain as still as possible, even avoiding facial movements. Many children will require anesthesia in order to remain as still as possible.

Which test is right for your child? Most doctors will start with an EEG. My son had his first EEG shortly after his autism diagnosis, at the age of three. A neuropsychologist whom I was working with at the time noticed some spikes on his EEG results. I took them to a neurologist who was covered by our insurance, and he told me that my son was not having seizures. He did not take any medication for seizures until he had a noticeable petit mal seizure at school four years later. Was the first doctor mistaken? I don’t know, but I often wonder how things might have been different if I’d pushed for a second opinion back when my son was three years old. I have also heard that some neurologists will disregard a few spikes on an EEG if they know that the patient is diagnosed with autism, so it is important to find a doctor who specializes in epilepsy and has experience with patients who are on the autism spectrum.

We chose to follow through with the brain SPECT after my son’s EEG came back clear, yet he was showing regression in his RDI® program, along with other disturbing symptoms. Not only did the brain SPECT show seizure activity, it also allowed his doctor to pinpoint which areas of his brain are under-active, and which are over-active, and he put him on a different medication that met his needs much more effectively than the last seizure medication he was on. Knowing which areas of his brain are affected has also helped me and my RDI® consultant choose appropriate objective to work on. We are proactively working on stimulating the areas of his brain that really need it.

Even if your child has never exhibited a noticeable seizure, it is still possible that there is seizure activity that could be impeding progress. For a full list of symptoms, visit www.epilepsyfoundation.org.

Part 3: The Treatment.

The results of my son’s brain SPECT showed focal seizures deep in the center of his brain. These seizures were so deep that an EEG test did not pick them up. His doctor prescribed Depakote, and anti-seizure medication. We did a baseline blood test prior to starting the Depakote. These tests are run approximately every three months, to monitor the amount of Depakote in his system and to make sure that it is within a healthy and therapeutic range. We also started at a very low dose, and gradually built it up to his current level. We saw his doctor every two weeks as we gradually increased the dosage.

When he first started taking the medicine, I noticed that he became a bit more emotional and less regulated. With every dosage increase, there was a period of regression, which generally presented as increased rigidity and emotional dysregulation. He has always had a habit of obsessing over certain toys or objects, though he would occasionally change the focus of these obsessions. This had been a constant source of stress to me as I worked on his RDI® goals. I nicknamed his obsessive interests “The Nine-Headed Hydra”, after the mythical creature with nine heads that could not be killed, because every time you chop a head off a new one grows back in its place. That’s what my son’s obsessive interests felt like to me. I would redirect him away from him Thomas set, only to have him shift his focus to the Mickey Mouse Clubhouse. I was exhausted.

Once we started on the medication, I noticed a pronounced increase in this obsessive behavior with each dosage increase. This would last for approximately three days, after which it would improve. For example, he had been taking Depakote for about two months, and we were still gradually increasing the dosage every couple of weeks. During this time, his aunt and uncle gave him an animated Mickey Mouse Christmas Decoration they stored in their basement. He was completely obsessed with this Mickey Mouse. This obsession went beyond most of the obsessive interests that I had dealt with prior to the medication. He carried this thing with him everywhere he went in the house, he put it next to his bed at night and I had to threaten to take it away because he would not go to sleep because he was talking to it. Luckily, this only lasted a few days and while he still likes Mickey Mouse it is no longer the object of his intense obsession.

Once we found the optimal dose, there were many positive changes. The obsessive interests diminished greatly. His eye gaze improved dramatically, and he started reading and using facial expressions in a natural fashion. He started sharing information about his day at school, and asking me questions about my day. His teacher and other adults noticed the increase in sociability as well.

As he grows, we continue to see his doctor regularly and to monitor his medication. One of the side effects is that he is hungrier than he used to be. This, combined with the onset of puberty, has led to some weight gain so I am careful to monitor what he eats and to make sure that he is getting some exercise. I also keep a close eye on him for regressions. At one point, we noticed that his ability to use facial expressions had decreased so we increased his medication and it returned. I don’t know if he will require medication for the rest of his life, but I do know that for now it has allowed him to learn and to connect and we are now focusing on getting his RDI® program back on track. He still had the initial building blocks of co-regulation and coordination in place so it was mostly a matter of filling in the nonverbal communication pieces, after which collaboration came easily.

Click here to read Part 1: Our Story of the Autism and Seizures series.

Laurel Joss is an RDI® Program Certified Consultant in Chicago Ridge, Illinois. She has a master’s degree in early childhood education. She has two children, one of whom is on the autism spectrum and has been using RDI® strategies for the past seven years. Visit her blog at remediatingautism.blogspot.com. Part 4 in this series coming soon!

Holidays, Traditions and Family Events

Carlotta Baird — Mon, 22 Mar 2010 14:03:00 GMT

For this post we're spotlighting a webinar series for parents by RDI Consultant Kat Lee. This year-round series of webinars focuses on holidays, traditions and family events. Webinars are currently offered for parents and professionals who are using the RDI Program. To view one of Kat's webinars available for the general public, click here or on the link at the bottom of this post.

Kat, Please tell us a little bit about yourself.

My journey in autism started 15 years ago when my son was diagnosed with autism at age 2. I had enjoyed a career in radio/ TV for over a decade but it was time to go home to be with my son and daughter. We felt autism threatened our whole family and took a pro-active approach, involving ourselves in every area of our son’s treatment. I eventually became an ABA therapist and then became an RDI Program Certified Consultant. I have been certified for 6 years. I’ve been hosting RDILS webinars for almost two years, both for parents and professionals.

Can you tell us a about your webinar series, how does it run and what is your topic of discussion?

The series explores holidays, traditions and family events. We discuss how to incorporate RDI into these important times. In our series, we’ve talked about every thing from Halloween to family reunions to various religious holidays…whatever is important to the families, that is what we try to talk about. It runs around every seasonal event we can think of…including our special series on summer vacation. It’s a year around series and the series is available in the archives of the RDILS for review any time by parents.

What is your main purpose for hosting these webinars?

I have a practical reason and a heart reason. From a practical stand point, events offer us an opportunity to 1) have a multitude of natural activities which we can frame for our objectives ( i.e. at Valentines, we make Valentines cards for friends) 2) also, holidays and events serve as benchmarks. For example, we can look at Valentines every year and think about where we were last year, where we are this year, and preview were we will be next year. My heart reason though is stronger. I don’t want autism to steal wonderful family event memories from the children or their families. Making Valentines cookies should be a wonderful family memory…family traditions are important and we carry them with us always. I want to ensure that our families have those wonderful memories with them forever.

What surprises you most about doing webinars?

I had not really made the connection to the webinars to the TV and radio work I did in the past. It’s really like a combination of the two for me. The radio was always live, the TV mostly recorded. This is a combination of both and I’m the ONLY one talking. No guests to talk to on the phone, no people to interview live. It’s challenging but I love it. For me, I’m using my old skills and my new and combining them and I hope, helping families.

What have you learned from the webinar participants?

I’ve learned that the best ideas and creativity come from the parents who have been there/ done that. I’m very humbled by the vast amount of knowledge and wisdom our parents have. They come to be helped but our parents end up helping others by exchanging ideas and brainstorming together. It’s a beautiful thing!

What are some of the advantages of having access to the RDI community?

The biggest advantage is that every one has a life of expertise in some area…some skill, some life lesson they acquired long before autism, as well as after. We bring all of those skills, all of those wonderful minds together to help each other.

What was one of your favourite webinar moments?

Really, my most favourite moments are those when it seemed like every thing was going to go wrong but every thing went more than right. For example, one webinar, my camera would not come up. I had to shut my computer down and it took forever to come up. I came back live at 7:05, said "let’s rock” and off we went. I would have thought it would bomb but it was one of the best ever…maybe all that excitement of whether it would “happen” or not. Or like the time when I had my cats locked out. They found a way in …I saw two little tails prancing by and they proceeded to have a huge fight. I calmly went on as though nothing was occurring. Later some one told me they could not even hear the cats, which made it all the more funny to me. That webinar too went very well despite the distraction. It was not quite the same as reading the news live and having some one moon me but almost!

But of course, the best times are when I know we have really helped some one.

What has happened as a result of your hosting these webinars?

I’ve found I want to do them more and more. I’m blessed by doing them, I always learn from who ever is there and a connection is made. It does not matter if only one person is there or even if no one is there because I know we will help some one in the archives.

What are your future goals or aspirations?

I’m so thankful to be where I am. I do believe in setting goals but I suppose mine are pretty basic…to continue to work as a family for my son’s best possible life, to continue to grow as a professional, being mentored by others and hopefully to help others by mentoring them. And mostly to be what I need to be to my wonderful children and husband.

What do you hope parents take away from your webinar series?

I hope they take away practical ideas and tips for their every day lives with their children. But more than that, I hope they feel over all support from the community. Autism is a very lonely road for parents. I never want a parent to feel alone or unsupported. I know that our community here on the RDIOS can provide that support, that help to other parents. I hope I’m able to be a part of that process through the webinars.

What defines a good webinar?

A good webinar is any time that I am able to help even one person. I always remember that while I may have several people there, I’m speaking to one person at a time…trying to assist them in their every day lives with their children…I never forget that there is a mom or dad on the other end of the connection that needs help.

To watch one of Kat Lee's webinars available for public viewing, please click on the image below.

To contact Kat Lee, please email her at kat1216@aol.com.

Autism and Seizures: Part 1 - Our Story

Carlotta Baird — Thu, 18 Feb 2010 15:40:00 GMT

Guest Author: Laurel Joss, M.A, ECED, RDI® Program Certified Consultant.

I have been an RDI® Consultant for three years and an RDI® parent for seven. I started RDI® back when it was done in an empty room full of beanbag chairs. My son was four years old at the time. He’d been diagnosed with autism a year earlier, and like many mothers of newly-diagnosed children I spent a lot of time on the internet searching for help. Mainstream medicine offered little to children like my son, so I spent a lot of time on autism parent groups networking with other parents. I started hearing about a book called Solving the Relationship Puzzle, by Dr. Steven Gutstein.

I ordered the book and was intrigued. Here was a program that offered more than “social skills”. This program could actually help my son to learn the “why bother” of social interactions, to help him to become intrinsically motivated to form strong relationships with his family and eventually with peers. I was excited when I heard that Dr. Gutstien was coming to my town for a two-day seminar and I registered. His presentation made sense to me and the video clips he played were nothing short of amazing. If I hadn’t seen the “before” clips I never would have believed that some of these children were on the autism spectrum at all. I wanted that for my son.

Luckily, there was a certified consultant in my area so I signed up for her waiting list and began reading more of Dr. Gustein’s books. At that time, there were no parent objectives. There was no online operating system. I cleared a space in my house and filled it with beanbag chairs. I started doing some of the activities in Dr. Gutstein’s book. Eventually our name came up, and we started to work with a consultant.

The program has evolved over the years to its current form, which starts with parent training, then leads into specific child objectives. The early child objectives in Stage One guide parents through re-establishing a co-regulatory relationship with their child. Co-regulation is the dance of social interaction, in which your actions are influenced by, but not controlled by, your partner’s actions and vice-versa. When you are engaged in conversation, you are involved in a co-regulatory exchange. Once simple co-regulation is mastered, parents work on guiding their child in coordinating their actions together. Once this is mastered, you move on to Stage Two, where the foundations of collaboration start.

My son had mastered Stage One, but some of the Stage Two objectives continued to elude us. In Stage Two, there are several objectives on nonverbal communication, specifically, parent and child learn to have simple, back and forth conversations using only facial expressions, gestures, or prosody. My son was able to do so with gestures, but facial expressions were always a challenge for him. It was frustrating to me that he was able to master objectives in higher stages, yet his difficulties with facial communication was always an obstacle. Finally, my consultant suggested that we have him checked for focal seizures.

Focal seizures are abnormal electronic disturbances that remain in a limited area of the brain. They sometimes turn into general seizures, which affect the entire brain. Symptoms vary depending on which part of the brain is affected. They may include abnormal muscle contractions, complex repetitive movements, lip-smacking or chewing and swallowing without cause, forced turning of the eyes, numbness or tingling, and mood changes.

My son had one obvious seizure at school three years ago. He had an EEG, an MRI, he was on Trileptal for a year and he did not have any other obvious seizures during this time. He also remained “stuck” in the same RDI zone. After a year on the meds, his neurologist did a follow-up EEG, which showed up clear, so we took him off the meds. He seemed ok at first, but after a month or two we noticed some disturbing trends:

His ability to read and use facial expressions, which was never great to begin with, completely went away.
He started occasionally eating until he vomited. The first time this happened it was 4th of July, and I thought he’d just eaten too many s’mores. After the third time it happened, I knew there was more to the problem.
His sleep patterns were disturbed. It took him hours to fall asleep, and it was really difficult to wake him up in the morning.

These were just a few of the more obvious things we noticed at this time. My consultant had been working with some other families whose children were suffering from seizures and she suggested that he might still be having problems there. They were seeing a doctor in the northern suburbs of Chicago who specialized in autism and seizures. He did a test called a brain SPECT, where they inject your child with dye and take a full color picture of the brain so they can see what is really going on.

My son’s brain SPECT showed mild seizures in the center part of his brain. They were so mild that they did not show up on an EEG, but they were enough to affect his ability to read and use facial expressions, among other things. We started him on a low dose of Depakote which we gradually increased under our doctor’s supervision. It was not an easy time – we had lots of ups and downs. He would get more impulsive, more obsessive for a few days after each dosage increase but then he would suddenly improve.

At this point, he has improved so much. Last week we were making French toast. As he was cracking the eggs, some of the egg goo got on his fingers. He looked up at me, laughing, and said “Ewww!” It was the “engages in back and forth dialogues using only facial expressions” objective that had all but disappeared! I made a face back and said “Ewww!” He laughed, cracked the second egg, and purposely stuck his fingers in the goo so we could do it again.

I am sharing our story in the hopes that it might help some other families out there who are stuck. I don’t claim to be an expert on seizures and autism yet, though I am certainly on the front lines learning all about it. Today I found out that my younger son, who is not on the spectrum, is almost certainly also having seizures. It hurts a bit, but at least I know where to go for help.

The thing is, we knew that he was having seizures, but our HMO neurologist just did the bare necessary tests and stuck him on a drug that really did not help him. It was only after my consultant referred me to this other doctor, who is of course out of network and therefore out of pocket, but who actually understands the link between autism and seizures, that we finally had some results. So if anybody out there is working with a child who sounds like mine, who is bright and able to do higher stage things, yet can’t seem to get some of the stage 2 basics, this might be a route to check into. However, it is really important to find the right neurologist. My son’s doctor has read EEGs that clearly showed seizure activity, but the doctor dismissed it as “part of autism”. It is so important to find someone who truly understands how the brain works, and who is able to do the brain SPECT, and who will find the right medicine.

Love Isn't Always Enough

Carlotta Baird — Mon, 01 Feb 2010 14:51:00 GMT

Guest Author: Diane Morris

We like to think love has power, that it forges a connection stronger than space, time and the many obstacles life can throw between two people. Countless stories and songs attest to humanity's unwavering belief that love is more than an emotion.

So you can imagine my feelings of utter failure as a mother and a human being on one of the many days when my son Theo, then age six, used every ounce of his considerable strength to try to beat the daylights out of me. I pinned him to the floor to protect myself, softly told him how much I loved him and begged him to calm down. When he seemed to relax, I leaned in to kiss him and he tried to head-butt me.

It was early 2008, and my husband Greg and I had officially pulled Theo out of school, where he was in a classroom for children with autism. I decided to home school him after one of his tantrums ended with his teacher's arm in a sling.

When Theo and I began spending our days together, his meltdowns were hard to predict, and once they started neither tenderness nor toughness could stop them. Often, his rage subsided only when we were both exhausted and in tears. Not that he was always such a hellion. He could be playful and sweet. But unexpectedly, something would set him off. Greg and I were afraid to take him anywhere, and our lives revolved around trying to avoid the next eruption. His older brother, Kenny, a gentle and passive kid, was terrified of him.

For months, I struggled to improve my relationship with Theo. Things got a little better, but mostly my earnest expressions of motherly love were rebuffed by raging hands and feet. I grieved over my failure. Could he not feel my love? Could he not understand it? Why was my love for him, which I felt so deeply, so hopelessly inadequate?

Never did I think I would give a six-year-old antidepressants, but in desperation Greg and I gave it a try. The medication slowed his aggression, so instead of going from 0 to 60 in 0.5 seconds he went from 0 to 20, giving me a chance to understand what was going on. Theo wasn't angry, he was anxious. The poor boy had a million routines in his head, and whenever things didn't go exactly how he expected he was overcome with anxiety. Perhaps the predictability of a tantrum was easier for him to handle than the unpredictability of day-to-day life.

With the help of Amy Cameron, a Relationship Development Intervention Consultant in Apex, I learned how to build Theo's trust in me. He discovered I was there to help him and guide him, not to suppress his natural energy or force him to behave. He learned that I respected his feelings and that I would work with him so we both got what we needed. I read Ross Greene's book, The Explosive Child, and came to understand his inflexibility as a learning disability, not a behavior issue, that could be addressed with kindness, not punishment.

Today, Theo is a different person. He is happy and helpful, and he loves his family. He still has his moments, which is understandable since, at age eight, he's developmentally two or three years old, and his communication skills are severely limited. But his occasional meltdowns are now minor incidents instead of tear-the-house-down events.

Love, no matter how strong, is just an emotion. But knowledge, understanding and respect have the power to change a child and save a family.

Reprinted with permission from newsobserver.com.