Wednesday, February 28, 2007

Awesome Work

I think I have the most incredible job. It is such a privilege working with such an array of families. Each family comes with their own challenges and each come with their own strengths. I have learned from each family and thoroughly enjoy each of the unique qualities they provide. The children are such a blessing as well. Each child also comes with their own challenges and strengths. It's an amazing process to figure out what each child/parent/family needs and guide them to a happier more fulfilling home. Thank you Dr. Gutstein and Sheely for developing such an amazing program! You've truly changed hundreds of families' lives through your hard work!

In addition to the families that I work with, I get to work with the most amazing people. My co-workers are such a joy to work with and I learn from all of them daily. Every week new ideas are generated and new approaches formed. Nothing ever remains static or boring around our center!! This keeps the work that we do challenging and very exciting. Often I leave work with my head spinning, but am always so excited to return to work. What a unique privilege to have!

One of the things that helps us to continue offering top of the line services is to receive feedback and ideas from others. Especially those who live with a child with special needs. As Nicole mentioned yesterday, we have developed a survey for families to fill out to help us better understand the educational needs of their children. I am so thankful for the thirty people who already filled this survey out! What a wonderful response so far. (That was just in the first 3 hours since the survey was posted!!) For those who haven't filled it out yet, take a few minutes to do so now. It doesn't take long and the information helps us to continue offering services that are the most meaningful to our families. There is a link on the left side of the page called Instructional Program Survey. We appreciate your feedback!

Until next week,

Tuesday, February 27, 2007

Take Our Survey!

There has been a lot of talk around our office lately about school-related issues and options for children and families. We have a number of families for whom school is a major stressor and, in some cases, is creating very tangible obstacles to remediation efforts. As a professional who began my career in special education, I feel torn about school-related issues. On the one hand I understand the very real constraints public schools face in developing individualized programming for children. On the other hand I understand the very real needs of children and their families to have programs that go beyond compensation and getting through the curriculum.

Those of you who know us as a staff know that we like to think creatively and dream big! “Out of the box” thinking is pretty common around here, and we are beginning to do that in relation to school / instructional options for children and young adults who need a different type of setting and instruction in order to be successful. To assist us in this process, we would like to gather as much information and ideas from families as possible. We have created a short survey on our website that asks questions related to schooling and instructional options. The survey should not take more than 5 minutes to complete, and will provide us with some data as we move forward with planning new and innovative programs. We want to provide educational programming that will assist families and schools in meeting the needs of learners who are not flourishing in traditional general or special education settings. Establishing our own program will also give us a way to provide hands-on training to school professionals who want to begin implementing principles of remediation and a dynamic intelligence focus in their own settings.

If you are the parent of a special needs child please use the link below to access our survey and provide us with information that will move our planning process forward. We will certainly keep you updated through the blog with our progress, and look forward to unveiling some great educational options in the near future!

Click Here for Survey

Until next week,

Friday, February 23, 2007

Prioritizing Your Future

Again, I have to thank everyone else for their previous posts this week for my inspiration into finding a quote to give you all to think about. There was talk about prioritizing treatment for your child and future plans. Thinking about these 2 topics together led me to this quote:

The future is always beginning now. ~Mark Strand
Now - you must figure out is important and the top priority to work on so you can have quality of life in your future.
Future - you have to be thinking about this constantly. It must be your priority. Quality of Life depends on this. If the future is always beginning now you have to start thinking and prioritizing. Don't wait one more day!

Thursday, February 22, 2007

Planning for the future

What does it mean to look toward the future? I feel it is so important for people to at least be thinking about the future and what they would like to see not only for themselves, but for their children as well. In the schools we tend to only look one year down the road. Why is that?

This point has been driven home to me several times this week and I felt like this would be the perfect time to write about planning. This seems to be the time of year when schools and families start thinking toward the next year. This can also be the time when problems start to crop up as we go through that long stretch between Christmas and spring break. This being said, I find it very helpful to at least think about long range when making plans for kids in the school system. I think parents should be encouraged to at least think a little bit about where they would like to see their children in the future.

Well in at least two instances this week I have been told by superiors that this is not a good thing. Parents aren't ready to think about this. They are too new to the diagnosis of autism and the special education system. Well if not now, when?

Having some type of long term goal helps in establishing the short term goals we want for our children. I know as a school district employee it helps me to make short term goals if I know what the long term expectation is.

It has been a very frustrating week for me. I hope that the parents that read this blog take this information and at least think about what they would like for their children in the future. One of my favorite things about the RDI program is the mission previews we do with families in the very first appointment. I think this gives all of us a sense of direction. Does this mean that these plans or thoughts can't change along the way? No way it just gives a direction to drive our car in.

So take a few minutes this week and put some mission previews together (what do you want for your child 2 years from now, 5 years from now, 10 years from now). I think having this helps us not only to see where we are going, but all of the progress we make along the way. We all have thoughts about our own future why not have some for our children?

Talk to you next week,

Wednesday, February 21, 2007

Creative/Flexible Thinking

I can't believe that I've already covered 4 of the 5 core deficits! (self awareness, episodic memory, appraisal/dynamic analysis and experience sharing) The time goes by fast! The final core deficit is creative/flexible thinking. Quite often this is the core deficit that most people can identify and say "ah, yes" autism and flexible thinking certainly go hand in hand.

The core deficit of creative/flexible thinking is the idea that a person comes upon a problem (a change in what is expected) and is able to come up with a creative way to solve the problem. They are able to be flexible and come up with a solution. I've had families share with me that they don't think their child has a problem with flexible thinking. They tell me "He is able to go with the flow of the day. I can drive different routes to different places and he is just fine." This same family ran a little test and every day switched seats at the dining room table. The first night, not a big deal, the second some resistance and by the third time it happened, outright refusal to change seats. Not so flexible after all. Many times a child can appear flexible, but if you know your child's coping mechanisms you may figure out that they are not coping as well as you thought. Many times you will notice when there is a change in routine these coping mechanisms show themselves in full force. Some will fall to the ground in a full out temper tantrum, others will get silly, while others will start scripting or using delayed echolalia etc.

A great way to help not so flexible thinkers to become more flexible is to present challenges that they can be successful in solving. As they feel more competent in successfully solving a challenge, the more they will approach moments of uncertainty or challenge with less anxiety and more willingness to work through it. It really is amazing to watch our kids work through challenges and come out feeling so great about themselves. Those who are brought through a challenge with the right amount of support quickly become much more flexible in their thinking.

Imagine entering the working world and not being able to be creative or flexible with a problem. We would run into problems immediately in any job! Challenges arise all day every day and it's essential to learn to work through these moments with creativity and flexibility!

Until next week!

Critical or Not?

Last week I wrote about the need to prioritizing treatment needs from the perspective of knowing what needs to be treated, placing treatment in an appropriate context in the life of a family, and using an approach that treats foundational issues as priorities. There is one more thing I would like to address in this arena, and that is how to determine treatment priorities from a developmental perspective. To place this discussion in context I’d like you to consider the following:

Joe gets in a bad car accident and ends up with a variety of major and minor injuries. He has a brain bleed, a collapsed lung, broken ribs, a leg broken in 2 places, and a sprained wrist. When he arrives at the hospital the doctors immediately call in specialists to address the most critical issues - the brain bleed and breathing problems. He is in surgery for hours, but survives and begins the process of healing in his brain and lung. Once he is stable and out of surgery the orthopedic surgeon comes onto the scene and puts pins in his leg so the bones can heal properly. He then begins the process of healing his leg bones in a cast. The doctor doing rounds comes in the next day and decides that the course of treatment for the broken ribs and sprained wrist is rest and allowing the body to heal those things over time.

This progression of treatment makes sense. Joe’s doctors prioritized the needs of their patient according to what was most life threatening and then worked there way to other issues from there, each time making a decision about what was the next most pressing issue to treat. It wouldn’t make sense to any of us if upon entry to the hospital the doctors had put a cast on Joe’s leg first; or wrapped an ace bandage on his wrist; or wrapped his head in bandages to stop the bleeding without doing surgery. No! When it comes to a situation like this is seems very obvious what to treat first, second, etc. down the line.

When it comes to treating children on the spectrum, however, we have historically gotten our priorities backwards – treating things first that are best left to later, and very often not treating the main problem(s) at all. Consider the child who presents with the core deficits of autism (which means problems in experience-sharing communication, dynamic analysis, episodic memory, self-awareness, and flexible thinking), speech articulation problems, academic delays, and self-stimulatory behaviors. Very often it’s the more obvious and tangible things that get treated first. The child might be placed in speech therapy for the articulation problems, tutoring or discrete trial training to learn academic skills, and sensory therapy or behavioral therapy to address the stimming behaviors. The problem with this treatment approach is that it is the equivalent of treating Joe’s sprained wrist first when he has a brain bleed and a collapsed lung! It’s not that those things aren’t important to address – it’s that they are not the MOST important things to address first.

If we were to prioritize treatment for a person with autism in a way that makes sense we would treat the foundational developmental issues that contribute to the core deficits of autism first. Obviously if there were significant behaviors, feeding problems, etc. that were at a critical level we would work on those first or at the same time as starting work on developmental foundations. This process would entail beginning to establish the developmental foundations for interpersonal engagement and relating between parents and child. Once those foundations of development were begun we would reassess the remaining needs to determine what still required treatment. In many cases there are issues that fall by the wayside when we begin to treat the most pressing developmental foundations first. What also often happens is that as adults we re-prioritize what is critical in terms of treatment, and issues that seemed critical before become not so critical as children begin to progress developmentally. By looking at the problems that are still present once developmental foundations begin to come together we can determine what to treat next. It doesn’t make any sense to treat speech articulation problems when a child has no developmental foundations for using their speech to engage in real communication! It doesn’t make any sense to teach a child to read words or do math facts when they don’t have the developmental foundations to think about what they are doing and apply it in their lives! We have to think about what makes sense and understand the process of child development enough to know that teaching things out of context doesn’t make sense. We have to look beyond trying to fix a tangible problem that we can easily see or assess (Johnny doesn’t say any words. Susie flaps her hands. Tommy doesn’t know his alphabet. Lily doesn’t know how to play with other kids.) and look at whether the child has developmental foundations to make working on those things meaningful. If not then we must start with developing those foundations. To do anything else just doesn’t make sense!

Where are you in the process of sorting out what is important and not important for you and your child to work on? What are critical priorities and what aren’t? Are you spending a lot of time, energy, and money wrapping sprained ankles instead of treating the major problems? I hope some of you feel great having read this post, knowing that you are treating the critical areas now and leaving less critical problems until later!

Until next week,

Saturday, February 17, 2007

What's HOT (Horizons Occupational Therapy)

A friend laughing, water lapping against the shore, someone singing in tune, birds chirping; these are sounds that are pleasing to my ears. What about the loud vibrations of a stereo in someones car, the humming sounds of the florescent lights above your head, the furnace running, the toilet flushing, the humming of the computer, a baby crying, someone sneezing, a siren blaring; these can be disturbing to different people. There are many sounds that go unnoticed that effect us on a daily basis.
Think about people who appear to to distracted in a busy environment. Do they have a glazed look on their face, are they holding their ears, not following conversations, becoming upset for no apparent reason? Many of us can filter out various sounds and continue on with our work, while many others have difficulty filtering out all the extra noises that each of us get bombarded with. This is auditory processing.
Some sounds are found to help by using certain types of music. Classical music can help people to focus and attend to task, help with academics, communication, engagement, and body organization. While other types of music with rhythm can help with body movement, timing, rhythm, sequencing, postural organization, and emotional responses. Sounds of nature can help with body awareness, and can make a person feel calm and relaxed.
Even the very loud base booming music coming from the car stereos, may help a person feel more grounded, to help them focus.
It is important to remember that sounds that you may enjoy, may be very difficult for someone else. Also, be aware of the background noises that could be effecting your feelings and emotions.
Moods can change very quickly with an unknown background sound, or by seeking out various sounds. People can experience joy, happiness, sadness, anger, frustration...and many more just by the sounds they hear.
Sarah OT

Friday, February 16, 2007


Ok - while working on a project I came across this quote and literally laughed out loud at my desk. I'm glad no clients were around, or they might have thought I'd lost it. I found this quote to be full of visual images - I hope you enjoy it.

You can't make footprints in the sands of time

if you're sitting on your butt.

And who wants to make buttprints

in the sands of time?

- Bob Moawad

Have a great weekend! Enjoy!


Thursday, February 15, 2007

【U】 加工 (Processing)

Processing is the topic for this week. I have had a lot of time to think about this over the course of the past week and have come to realize that I take processing for granted so often that I wonder just how much the students I work with really miss on a day to day basis. If we really stop and think about processing and the great deal of effort it takes it is a wonder that we are able to have such rapid fire exchanges.

For our children on the spectrum this rapid fire process is much slower. For many what would take a neuro-typical child 5 seconds to process might take a child on the spectrum upwards of 30-60 seconds and then they may not even process the whole message. For others it may take as many as 5 minutes and for those in the extreme it may be as long as 20 minutes. Now think about that in the context of our ever changing world and especially in the context of school.

Now I’m not putting down schools as there is a ton of information that needs to be taught in a day, but would a little processing time hurt anyone? Have you ever been in a classroom when the teacher is asking questions? The scenario usually goes something like this – The teacher asks a question and within 5-10 seconds he/she is calling on a student to answer. Now if you are a slow processor will you ever get a chance to answer or will your answer most often be wrong if you by some chance just randomly get called upon. Interestingly enough it isn’t just our students on the spectrum that need more processing time. Even the children who are quick to answer may actually come up with more thoughtful answers given a little more time to think and process. Interestingly I have been reading a book about creative intelligence lately and processing time is directly tied to a person’s ability to respond creatively. The thing is that those people who are slow processor may actually have some of the most creative answers/solutions to questions/problems if given the chance to respond.

I work with several children both at school and at Horizons that are very slow processors. You can “see” the wheels turning in some kids it is that slow. Since I have been thinking a lot more about processing lately I have really been trying to slow myself down and consciously give these children the time they need to process what I have said. You would be amazed at the results. They do actually know what you want them to do or they can come up with a thoughtful response to my comments.

Think about how frustrating it must be to always be several steps behind. It is no wonder that our children’s responses often don’t seem to make sense or that they retreat into echolalia. Hey I know the rules are that when someone asks me a question I need to give a response whether it makes sense or not and I need to hurry because they aren’t going to wait. I can also use echolalia as a way to cope with not being able to process rapidly and then they will just give up and not ask me anything else.

Now there is what I would call “good” echolalia and we all do it from time to time. We all use “good” echolalia to help us process we might just not do it out loud. You can tell the difference. The difference is in the quality of good echolalia and it is being used to help process what has just been said. You don’t have to admit it to anyone but yourself, but you know you do this. We often call this self-talk and it is our brains way of making sense of the world. The amazing thing is that I see children on the spectrum’s processing speed increase as they begin to use this type of processing. So modeling self-talk not only helps with self awareness, but also with processing.

So how do we help our children with processing? Slow down, slow down, slow down. Give your child time to process. A good way to do this is to slowly count to ten in your head after making a comment to give your child time to process what you have said. If they don’t respond after this you can try a prompt. My challenge to you over the next week is to try slowing down and providing some processing time. I think you’ll be surprised at the responses you get.

Talk to you next week,

Tuesday, February 13, 2007

The House is On Fire! (prioritizing treatment needs)

I recently had a parent refer to the many needs of her daughter in this way: “It’s like there are three floors of the house burning – where do you start and which level do you fight the fire on first? As I am a fan of visual imagery and metaphors, I’d like to use this as the springboard for this post on priorities in treatment. Keep in mind that I know absolutely nothing about fighting fires, so please no comments about the logistics of real firefighting in relation to my metaphor!

When a child has autism there are many areas of need to consider. The pervasive nature of the diagnosis leaves little unscathed in terms of development and functioning. The extent to which each area of need is impacted varies, but it’s safe to say that all children on the spectrum are affected by their autism in numerous areas. There are the communication problems, the social interaction problems, the restricted behaviors, rigid thinking, etc. that come from having the core deficits of autism. Then, for many kids on the spectrum, there are the co-occurring problems to address, such as impulsivity, feeding problems, sensory processing problems, motor deficits, academic problems, etc. The list can go on and on depending on the child and it can, indeed, feel like all three floors of the house are burning.

Once you have identified the condition(s) that require treatment, the question becomes what to treat, when to treat it, and how to treat it. There are some options to consider:
• If all three floors are burning there may be a tendency to decide to try to throw a lot of water on everything in an effort to put the entire fire out at once. I have seen parents do this and the result is generally unfortunate for everyone involved. What ends up happening is that the parents get completely overwhelmed with trying to address everything at once with comprehending a bunch of different therapies, driving all over the place to get to therapies, having all kinds of people in the home, paying for everything, etc. Trying to treat everything at once is a recipe for burned out parents and burned out kids. It’s also a recipe for a burned down house because by throwing water at the whole fire at once you will not be able to concentrate enough in one area to make a real dent in the fire. You might keep the fire from spreading, and you might reduce the flames a little on each level, but the fire itself will keep on burning on every level.
• One could also decide to concentrate water on the area that seems to be the most obvious – the top of the house where the flames are shooting out. This can be thought of as the approach of treating the most obvious problems first – my child isn’t talking, doesn’t look at me, doesn’t know how to make friends, and/or doesn’t behave normally so we’re going to treat those things. That seems like a logical plan on the surface, but the problem is that it is the equivalent of putting out the fire from the top floor first. You might save the top floor, but there is no foundation to hold it up so what you end up with is part of a house that is salvaged, but can’t support itself. This is what happens when we choose a skill-based approach to treatment that does not focus on core developmental issues that need to be addressed in autism.
• A third approach is to concentrate efforts on the base of the house first by putting out the fire there, and then working your way up to the higher levels of the house. This approach is the equivalent of working on the foundational developmental skills, abilities, and milestones that must be achieved in order for a child to make long-term developmental progress. It can be a difficult choice to make because it feels like the things that are most obvious are not being treated right away. It can feel like too much of the fire is allowed to burn while efforts are concentrated on one area at the base. However, this is the choice that must be made for long-term gain. It is in focusing on the core deficit areas of autism in developmentally appropriate and specifically targeted ways that we move forward.

As parents and professionals we have to recognize that there is only so much “water” to go around – only so many hours in the day, energy to expend, knowledge that can be absorbed, money that can be spent...the list goes on. I’d like to propose the idea that it is not necessarily about getting more water, it is about how that water is used.
• It is about understanding exactly what needs to be treated and prioritizing those needs so that a treatment plan is developed to work in everyone’s best interest, without extending beyond resources that aren’t there.
• It is about understanding that by treating foundational developmental issues many other problems begin to fall away. By taking a bottom-up approach we address areas of development that snowball and create change across the board in the way a child thinks, communicates, and behaves.
• It is about prioritizing family health above all else and recognizing that if the needs of everyone in the family unit are sacrificed in the name of doing “more” to treat autism, then in the end everything will be lost.
• It is about knowing how to make the most of the time, energy, and finances you can in targeting the core issues of the child’s disability.
• It is not about running around to try anything and everything, and making yourself, your child, and everyone around you crazy, tired, cranky, and broke in the process. That helps no one in the end.

Next week I’d like to extend this discussion to the specifics of prioritizing needs from a developmental standpoint. But for now, think about how you are prioritizing the needs of your child. Are you able to rest assured that you are targeting what needs to be targeted for now, and that everything else needs to be left for later? Do you have a strategy that is allowing you to put out the fire from the source instead of blindly aiming water at the obvious flames? Do you have a good balance in your family where autism is one part of what you focus on as a family, and not the thing that takes up everyone’s time, energy, and finances? These things are critical to consider, and good to do a gut check on every now and then.

Until next week,

Saturday, February 10, 2007

Whats HOT (Horizons Occupational Therapy) a very powerful sensory experience!
Just think about it... when you shake a person's hand for the first time, what feelings go shooting through your body when the connection is made? Is this person strong, secure, dominant, or weak, wimpy, afraid or even wet and sweaty? Lots of different types of touch influences our daily lives. Think of a scratchy wool sweater, or cashmere socks tickling your toes. What if someone from behind you comes up and tickles you, or if someone gave you a nice tight hug? For each individual it can be a totally different experience. What one person might love, another might hate. As different feelings of touch occur throughout the day, it effects our ability to focus or not focus on tasks, increase or decrease our anxiety, make us feel happy, sad, relaxed, and even angry. It is important to keep in mind that not everyone interprets touch in the same way. We need to be empathic, when it comes to feelings of others concerning the power of TOUCH.
Sarah OT

Friday, February 9, 2007

Man on Bicycle

One of our parents wrote this essay and gave us permission to share it with you here. It paints a wonderful picture of the importance of broadband communication and meaning-making between people. Thanks to Penny Ray for sharing this with us and for allowing us to share it with others.

I was at a busy intersection at rush hour, (Green Lake and Pontiac Trail) and I was the first car stopped at a red light in a left-turn lane. This intersection is always crazy, with people turning right on red from two different locations at the intersection. And drivers ignore red lights, and instead try to push two or three cars past the red light in each cycle.

A driver in my left-turn position, can't immediately hit the gas pedal when the green turn arrow appears. Rigidly following rules and laws (The law is go on green, stop on red) don't apply here, where other drivers are ignoring the law and pushing through their red lights and ruining my “green means go” opportunity. I must try to determine the intentions of the other drivers by their speed as their side of the light shifts to yellow.

On this day at the intersection, my wait for a green turn arrow is complicated by something unexpected. A young man on a bicycle approached on the sidewalk to my right, and his bicycle wheels are pointed to cross in the street directly in front of me.

I watched as he looked around in all directions, far up the road ahead to see how long the line of traffic turning into his projected path is. He looked at the line of cars turning right, directly in front of him. The button to prompt the light to change doesn’t work when he presses it. He scanned the situation in all directions again, saw a possible window of opportunity, and he put one foot on a pedal, leaned forward in his seat. I knew that he was preparing to take a chance against the "don't walk" sign.
Finally, he looked right at me; we made eye contact for a moment. He knew that I saw him. That's important, because his safety is at stake. He doesn't want me turning left on my green arrow if he makes a dash across the road in front of me at that same time. In that brief moment, where our eyes touched, we shared an experience. He needed to know that I saw him, needed to know that I recognized his communicative intent to cross that street, because when our eyes touched, I acknowledged that I knew he might try to cross in front of me without regard to the "don't walk" signal.

Watching him, silently, from my car, I "read" all sorts of communicative intent in this young man's body language. We did not have a conversation with spoken words, but I clearly saw meaning in his movements; I clearly saw his intentions, and he saw mine: His body language told me that he knew the intersection is dangerously busy; that he was going to try to cross in front of me; and that he needed to know that I saw him. He knew that I wanted to turn left when I saw the green arrow.

(Interestingly, my two minutes were spent shifting attention between the young man and the traffic lights. I did not consciously think about the experience we shared until after I returned home and sat down to write about it. I didn’t encode the color of his bicycle or his clothing in my memory. Our children on the autism spectrum have difficulty with both attention shifting, which is also a piece of non-verbal communication and experience sharing, and they tend to overemphasize unimportant elements of communication.)

Ultimately, traffic never paused long enough for the young man to cross the street while I was there, and I made my left turn and went on my way. A lot of experience sharing, meaning making happened in a couple of minutes. And then he and I moved on to meet new meaning to make, new situations to experience and navigate in dynamic ways.

Before RDI®, we taught our child that communication is about things spoken: words, talk, length of utterance, mands, tacts. Until RDI®, I never thought about communication being described as experience sharing or meaning making. One of the core deficits of autism is experience sharing. I never considered just how much experience sharing we do that is non-verbal, that happens as we don’t consciously think about it as we’re processing it. But now, having a child with autism and learning about relationship development, I’m paying attention to aspects of communication I’ve previously taken for granted. And nowhere is this new awareness spotlighted like it is when I am behind the wheel of a car, where I richly share experiences with other drivers, but without the benefit of “talk”.

I think back to when we began intervening before she was two years old, and wonder, "What was I thinking?" When we began intervening at home with our child, one of the very first steps was "Look at me." And then we did one of two bizarre things: We prompted her to complete a gross motor imitation (“Do this!”), or we gave her a visual field of three answers, asked her a question, and, to keep the data “clean”, we refused to look at the correct response with our faces, teaching her a) that communication is about looking and copying and b) that human faces do not share information.

How we must have confused my child. What was the point of teaching "Look at me?" I wonder, if we were going to discourage looking at me in situations where our child could actually practice referencing for communicative intent, for information? Look at me; then don’t look at me! Talk about a mixed message! And if non-verbal back-and-forth interactions are a prototype for dialogue and conversation, then is “Look at me” + “Do this” a prototype for echolalia?

We gave her words, phrases, sentences, skills upon skills, all without giving her any inkling of communication outside the one channel of talk. Often we told her, “GOOD JOB LOOKING!” as if eye contact and “looking” is an end in itself, and again, we reinforced that communication is not about experience sharing, not about meaning making, not about recognizing errors and breakdowns and making repairs. We failed to show her that there is meaning and communication in the direction a person faces when he speaks, that there is meaning to read from the eyes, faces, hands, gestures, pitch, volume and tone of voices of others.

We wondered why we saw so much echolalia in our daughter; wondered why she recalled bits and pieces of information that were so drastically different from the rest of us, like the color of a single object we’d seen instead of a broader memory of the fun and excitement in the experience we’d shared together. Could we possibly have taught her to communicate and encode experiences in the way she was demonstrating? And if so, could we give her a “do-over” in those areas and the other core deficit areas? The answer is an exciting YES!

I now know that an early part of typical infant and toddler emotional and social development is to practice what to do in uncertainty, which is watching Mom's and Dad's faces for information, clues, signals, experience sharing, meaning making which leads to active participation in interaction at a non-verbal level. It’s recognizing errors and breakdowns and making repairs. Part of a mind is understanding the perspective of another person based upon where that person looks and glances, based upon his actions; it's seeing the quiet wink that says "I love you" or a slight movement of exasperation with your eyes that lets me know you think the singers entertaining us at the fancy dinner are, well, horrible. Another part of a mind is understanding my half of that interaction.

The Michigan Department of Education words it this way in the English Language Arts Vision Statement, from Standard 7. Skills and Processes: Effective communication depends upon our ability to recognize when attempts to construct and convey meaning work well and when they have broken down. We must monitor, reflect, and adjust our communication processes for clarity, correctness, purpose, and audience. We need multiple strategies for constructing and conveying meaning in written, spoken and visual texts. Our literacy development depends upon on-going, personal-self-regulated assessment.

Dr. Gutstein defines communication “…as the desire to determine the relationship between what is in your mind and what is in my mind…”. Before RDI®, I always assumed that communication is mostly about spoken words and rules of grammar, syntax, social rules. I realized at that intersection that I use a lot of meaning making, experience sharing that has nothing to do with talking, words, length of utterance, social skills, and all in a matter of a minute or two. The many channels of communication serve me for this dynamic moment, and are then forgotten as I encounter a new moment to appraise, a new experience to share. We want nothing less for our children.

A relationship approach has made an incredible difference, and has given me new hope. I love moments when I’m searching in the pantry for something and my daughter walks into the kitchen and asks, “Mom, what are you looking for?” or when I’m getting ready to go somewhere, and she asks, “Mom, where are you going?” She’s seeing intent in my actions, seeing my perspective!

When the eyes of the young man on the bicycle met mine, we were not engaging in social skills, and we were not just making eye contact for the sake of making eye contact. A rote rule from a social skills course would fall short in this situation. We did not have a "Look at me!" moment. Instead, we "danced" briefly; we exchanged important meaning non-verbally, with gestures and facial expression and body language, which, at that moment, impacted his safety.

I want all of my children to experience that kind of "dancing".

Thursday, February 8, 2007

Non-verbal Communication

As promised last week I am going to talk about my observations of non-verbal communication. It is amazing how relevant these topics become when you really start to focus and think about them.

This past Friday we held a teacher workshop at Horizons talking about the core deficits of autism and ways that school personnel can make changes to improve those deficits. Of course one of the topics and activities that we talk about is communication. Nicole started this portion of the workshop by showing the short film One Man Band which is on the Cars dvd. I had never seen this short film, but it is an excellent example of how non-verbal communication can be used to convey an entire story. No words are used in this film, but the meaning can be derived simply by the actions, expressions and music made by the characters. Amazing!

Following this we split the attendees into groups and give each group a prop to use together. The rule is that there is no talking allowed, but they must find a way to use the material together as a group. This is one of my favorite activities because I love to see how people will try to communicate and work together without words. Some of the groups had no problem. One person took charge and then the others followed such as the bean bag group. They divided the bean bags equally and then began tossing them one at a time into the bucket. The card group also divided up the cards and then started to drop them on the floor into sorted number groups. The first person to get rid of all of their cards won. However the group that had the index cards, tape, scissors and paper clips started by sharing the materials, but then just worked independently of each other. No true communication going on or cooperation other than if someone needed the scissors or tape. The amount of gestures and animated facial expressions increased during this exercise. I think it is fascinating to see how different people try to communicate especially with people they don’t know.

As far as my other observations go I was walking down the hall behind a teacher and a student one day here at school. The student began by following her teacher, but when he put his hand behind his back and used a gesture to indicate that she should walk next to him she immediately interpreted that gesture and moved to walk by him. One night a few weeks ago we were meeting with a group of parents while Nicole was talking I was observing and one parent had his head turned and was looking off to the side with a passive look on his face. I wondered if he was listening. A few minutes later he came up with a great question that proved he had been listening, but his non-verbals sure weren’t communicating that. One more great example, yesterday I went to a classroom to pick up a student with asd for his speech session. As I went into the room I had my arms folded across my chest. He said to me “Why are you nervous?” After standing there for a minute stunned and trying to think why he would say that it hit me that he was interpreting my folded arms as my being nervous. I quickly assured him I wasn’t nervous just cold. Just think if that is the way he was interpreting my folded arms how often we guess what other people are thinking by what their body is telling us and how wrong we might be.

So for my words of wisdom this week just be careful of what your non-verbal communication might really be “saying” to other people. Next week I’ll be talking about processing as it relates to communication.

Till then,

Wednesday, February 7, 2007

Episodic Memory

Episodic memory is one of the more difficult core deficits to really grasp and to understand both conceptually and also to know when we see it being remediated in those with autism. First I'm going to give you a quick description of what episodic memory is and then give some examples we have heard or seen in some of our current families. It's my hope that you'll be able to recognize the little moments of episodic memory being formed in your child's life if you are a parent of a child with autism.

Episodic memory can also be know as an autobiographical memory. Think about it as a picture of our past strongly anchored by our emotional memories. Daily we use these pictures of our past to adapt the way we do things now. Those with autism don't have the ability to readily pull from their past to help them think about how to do thing differently today or to help them remember what the most important part of the memory was supposed to be.

An example of the deficit of episodic memory:
A family of mine shared an experience of going to grandpa's house. Whenever their son with autism would see grandpa, they would run off to the back yard and do special grandpa time playing with things in the shed. After this boy's grandfather passed away he continued to run out to the shed when he would go to grandpa's house and do the same things he would do with his grandpa. The memories of going to grandpa's house were encoded as playing in the shed. The memories were not being encoded as going to grandpa's house and playing with grandpa in the shed. Notice the difference? The procedural memory was there, the emotional memory of that being a special moment with grandpa was not.

Examples of seeing episodic memory:
The boy mentioned above (I'll call him "Sam") was playing a game of catch with dad. As dad was playing he would occasionally throw the ball away and "Sam" would run and get the ball. After doing this a few times dad would switched locations on "Sam" so "Sam" had to find a new spot to stand in order to continue the game. The second time dad threw the ball away, "Sam" looked back to catch dad in the moment of moving. "Sam" was able to remember dad's action from before and adjust his actions in the future to catch dad in the action.

"James" gets up at 7:00 a.m. to catch the bus at 7:45. One day he goes out to get on the bus and the bus had shown up at 7:40. He had missed the bus. "James" realized that he needed to do something different in the future to ensure that he wouldn't miss the bus again. That night he set his alarm for 6:55 to make sure he had plenty of time to get ready. He took a memory from the past, figured out what he needed to do to fix it and applied it to his future! What an awesome discovery for "James"!

It's critical that we slow things down for those with autism and "spotlight" the moments that are important in the activity so they know what to remember. Simple things like "wow, we made a nice tower" can help to encode memories of doing something with another person and also increase their competence to want to build a tower again in the future. Helping them to solve a problem, or letting them help solve a problem for you can help them to encode memories of coming up with other solutions to challenge. The ideas can go on and on of what we can do to help encode these memories. The most important? Slow life down to speed up.

Next week - flexible thinking!
Until then,

Tuesday, February 6, 2007

Apples and Tuna Fish

I recently watched from afar as a group of people on a message board argued vehemently back and forth over the merits of various autism treatments, particularly ABA and RDI®. There were strong sentiments on both sides and the battle became quite heated at times. Statistics were thrown around as evidence that ABA methodologies (discrete trial, pivotal response training, verbal behavior, etc.) are “proven” treatments for autism. Those on the RDI® / other therapy side of things went for the quality of life argument and gave testimony to their experience of ABA treatments not working for them.

I always find it interesting, if not a bit absurd, to listen to these kinds of arguments because it’s the equivalent of comparing two totally different things. It’s not even comparing apples to oranges, it’s like comparing apples and tuna fish! To engage in a discussion of the merits of any treatment (for any disorder), we need to start by examining what is being treated. In order to determine whether or not a treatment is appropriate and may be successful, we need to know what it is we are treating and what we want the outcome to be. Here is an oversimplified example: If I get a cold I may want to take cold medicine to help me feel better. When I go to the pharmacy there are 50 different kinds of cold medicine on the shelf for me to choose from. In order to make a good choice I need to know what my symptoms are and what I want the desired outcome to be. If I have a stuffy nose and sinus pain I will probably choose a different medicine than if I have a runny nose and a bad cough. I wouldn’t take cough medicine and then wonder why it didn’t take care of my stuffy nose – that wouldn’t make sense!

Now let's take this and apply the same line of thinking to autism treatment. If I have a child with autism I will most likely want to do something to help them make improvements in areas of deficit for them. As a parent we all want the best quality of life possible for our children! There is an array of options out there as far as autism “treatments”, and just like the cold medicine example we need to make a choice. In order to make a sound choice we need to know what the issues are that we are trying to treat and then choose the treatment that addresses those problems.

ABA-type therapies (insert your choice of specific method) have been shown to accomplish things such as improving academic skills, teaching self-care skills, and reducing inappropriate or maladaptive behaviors. There is a solid amount of research to show that this type of teaching / treatment is effective at addressing these skills areas. If a parent were interested in treating those areas, then ABA-type therapies would be a logical choice for them to make as a treatment for their child.

RDI® focuses on the developmental foundations for abilities such as flexible thinking, self-awareness, and reciprocal relationships with others, which begin to form in neurotypical children from birth. The goal is to help parents learn to guide their child through a developmental sequence that leads to the child becoming competent in the areas that they currently are not due to their autism. If a parent wants to address these developmental foundations for their child then RDI is the logical choice in terms of treatment.

When you look at treatment through this lens – what needs to be treated and what each treatment addresses – we see that comparisons need to be made very carefully. Once we know that two treatments, such as ABA and RDI, address totally different things, to compare them to each other doesn’t make sense. It’s the equivalent of comparing a cold medicine that reduces coughing to a cold medicine that clears a stuffy nose – they don’t do the same thing so you can’t begin to compare them on outcomes. It’s the equivalent of comparing apples to tuna fish!

There are obviously other factors that impact the process of making treatment decisions, and I plan to explore them in upcoming posts as I think this is an important issue that deserves attention. My main point here, though, is that it is critical to understand the goals of various treatments in order to best align them with a child’s needs. As parents we need to critically analyze any treatment for any problem by comparing what our child needs to the outcome goals for various treatments. It’s not necessarily about one being better or worse than another, it’s about knowing what obstacles autism creates for your child’s development and then determining which treatment outcomes best address them. Next week I am going to focus on the process of prioritizing a child’s needs in relation to treatment and how this plays a major role in treatment selection. In relation to this discussion on treatment outcomes and aligning needs with treatment, I would encourage readers to review Michelle’s ongoing discussion of the core deficits of autism. Check back in the blog archives to see her posts on this topic that goes hand in hand with making treatment decisions.

Until next week,

Friday, February 2, 2007

Get started - but it's not a race!

Again, since everyone talked about so many different topics this week, I'll have to branch out on my own as well. So, thanks to Nicole for finding this quote.

"How you start is important, but in the end it is how you finish that counts.

It is easier to be a self-starter than a self-finisher.

The victor in the race is not the one who dashes off swiftest but the one who leads at the finish.

In the race for success, speed is less important than stamina.
The sticker outlasts the sprinter in life's race.

In America we breed many hares but not so many tortoises."
-B.C. Forbes

Start making a difference in your child's life. You need to be the one to "take the bull by the horn" and make something happen. Stick with it - don't give up! Be a tortoise (even though they are slower) rather than a hare - make a difference!

Have a great weekend!


Thursday, February 1, 2007

Communication - What happens when it breaks down?

I know I said I would be talking about my observations of non-verbal communication today, but something came up this week that I have been thinking a lot about and it ties in with communication so I am going to blog about that this week and come back to my observations next week. Plus that will just give me more time to observe. So today I am going to write about what happens when there is communication breakdown.

We’ve all been there you think you told someone something and you didn’t or the way you said something led the listener to misinterpret your meaning. This happens all the time on a day to day basis. Most of the time this isn’t a big deal and can be easily corrected. Unfortunately sometimes it can cause a problem, hurt someone’s feelings or make someone mad. It can become an even bigger issue if it happens over and over again.

In my job here in the schools one of my responsibilities is to oversee the para-professionals that work with our autism spectrum disorder students in the general education setting. This week a para-pro switch was made without consulting me. I found out second hand that this was happening. Ultimately the principal and special education director are responsible for assignments and determining where the greatest need is at the time which is great and I don’t want that responsibility. It just makes it difficult when the lines of communication don’t always flow smoothly. It makes planning hard and breaks down trust and respect. The funny thing is that this situation ties in directly with appraisal which is what Michelle blogged about yesterday. If a little appraisal had taken place earlier then this situation could have been handled a bit better and it wouldn’t have been a case of needing to put a fire out, but preventing the fire from happening in the first place.

I think about this in terms of the communication difficulties that our students on the spectrum have and what happens when we are not able to communicate clearly with them. How frustrating that must be and no wonder they go back to static patterns. My reaction when things like this happen is to be mad or upset and to then sometimes just not care (which isn’t really the best reaction, but a human one). If that is my reaction then no wonder our students on the spectrum react the way they do.

Okay, enough complaining on my part. I challenge each of you to really think about your communication. Are you being clear, is there some other way of saying what you need to say, have you communicated with everyone necessary in that particular situation? Next week back to observing non-verbal communication.

Talk to you soon,