"Yes," "no," maybe so...

Communication is a BIG topic on several Rett parent lists I participate in. Parents often ask for information as they think about getting their 18-24 month old girls started with communication. One of the questions that comes up very often is "How do we go about teaching 'yes' and 'no?'" It's such a great question; these are abstract, intangible ideas that typically-speaking kids latch onto without being directly taught, so how do we go about teaching them directly? Perhaps it might be helpful to talk about that now.


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I think it is critical to look at typical chronological development with kids this young. At 18-24 months of age, our kids with Rett haven't had time to fall very far behind, and their emotional status is often right on par with their typical peers. We can use these facts to our advantage in teaching communication skills, particularly the less concrete concepts of NO and, later, YES. 

I’m not a speech pathologist but a special ed teacher with lots of training on language development. What I share may not be what every speech pathologist would do but it worked for my daughter and for many other kids with Rett or similar issues. You will also see that everything I do with expressive and receptive communication works towards developing literacy skills, because I fully expect any of our girls to learn to read in time.

Eighteen to 24 months is a time in chronological development when kids with Rett can develop communication skills right alongside their peers. The timeline may be a bit different for kids with other severe disabilities, depending on their early experiences and health issues, but the process is the same. Think about what you hear from verbal kids as they are turning two years old..."NO, NO, NO!" and "MINE!" It's an age when kids want control and to assert themselves, most often negatively. Ah, toddlers! You gotta love 'em! So in teaching yes/no, start with NO. Offer your child something you know she isn’t fond of and have the picture symbol for NO at the ready. When she refuses the object, whether by turning her head or pushing it away or however she rejects things, hold up the NO card and say “No, you don’t want ___.” Encourage her to look at or point to the card. Certainly don’t make her have the item! Just do this one time (no kill and drill!!!! We have to instill the trust with our kids that we believe what they say the first time!!!), but repeat the process often throughout the day: as you see she’s getting full at a meal, when an errand is an option (use her coat as the object), if there is a book or toy she’s not particularly interested in…. The whole purpose of this is to give voice to what the NO card means. When she is first learning, don’t offer NO in a non-negotiable situation, because it adds too much confusion about control. After all, smart parents don’t ask any two year olds if they “want” to nap when it is obvious a nap is needed; they simply announce that it is time, no discussion.

Once your child is effectively using the NO card, begin to present it to her at the same time as you present the undesired object. Something to keep in mind is that you want to present the NO card in the same hand every time. The goal here is consistency that will allow the child to develop something we call "motor automaticity." This is a fancy term for memorizing where something is going to be in space, such as we do with the brake pedal or turn signal in our cars. Motor automaticity speeds up communication by reducing the need to visually scan among choices, especially when the child is using many symbols at once. At our house, I hold NO in my left hand, and I’ll get into the reason why later. Now at the end of her meal, you would ask “Do you want more broccoli (holding up the spoonful) or no?”

Some speech therapists suggest offering a fist for no and an open palm for yes. While I love this idea, I will confess my daughter refuses to use these signs. I wish she would, and believe me, we have tried to teach it. Perhaps if you do this from the very beginning, it would work.

While a child is learning no, she is also learning to label objects. Whether she will prefer photo representations of objects or line drawings is a very personal thing to be tailored TO HER (for more discussion on the kinds of symbols to use, see this post on selecting materials). Always LABEL the card, because this way you are 1) laying a foundation for literacy and 2) insuring that all people using the cards with her are assigning the same meaning to her cards. Be sure to start with items that are highly meaningful and motivating to her: favorite foods, people, toys and books, pets. Also include verbs with this…two year olds use verbs!!...for activities she enjoys: a bath, swinging, eating, drinking, etc. I suggest starting with favorite objects and activities, just because that is highly motivating and will help direct her interest. But once the connection is made that objects can be represented with symbols (or pictures), you can add in others that are neutral or non-preferred.

Now that she has a nice little symbol vocabulary and NO, you can start pairing choices. If you want to make sure she is rewarded regardless of what she chooses, offer cards of two preferred items. However, keep in mind that this can create internal conflict in ANY two year old, because most kids that age want BOTH at times and will get upset that they can only have one! So some kids do better emotionally by offering a favorite paired with a neutral item. You can also pair a card with NO.

As far as which hand to hold cards in or, if you prefer to use a Velcro strip or board, the cards should be placed from HER LEFT TO RIGHT in the same order as you offer them. This develops a left-to-right orientation necessary for reading later. This is also true for yes/no down the road…we tend to say “yes or no?” so hold them with YES in your right hand and NO in your left; we are mirror image to our communication partner.

On to YES! I personally would wait until a child's had plenty of opportunities to practice the other things because they are more concrete. Ideally, she would have NO down really well before you introduce YES, because the concept of YES can be interpreted as “not-no” in the mind of a toddler. That's mighty abstract! Now you are going to offer a favorite along with the YES symbol, and the NO symbol. She won’t want to pick NO, because she wants the item, so she’ll look to the item and you can point enthusiastically to YES say “Yes! You do want a cookie!” Just as you did with no, take her response at face value and give her the cookie. Again, do it one time and repeat many, many times in the day. What you are trying to teach now is that YES can be acceptance of any offer. You’ll be able to cut back to just YES (no accompanying object symbol) and NO before long.

Other abstract word pairs that I find extremely helpful are more/all done, stay/go, now/in a minute/later, great/okay/gross.

At some point as a child's development expands, she will want some word or phrase to stand for the gray area between yes and no. It should be whatever feels comfortable to you and her: “something else,” “neither,” “something different,” etc. This becomes particularly important when choices are not cut and dried, but deserve further conversation. A case in point was once when a boy asked my daughter to the 6th grade dance. She was only offered YES/NO, so she told him “no.” Perhaps she truly didn’t want to go with him. BUT maybe she meant she didn’t know if she could attend the dance at all, or if she needed to ask her parents first, or she’d rather go with a group of kids and not just him alone. Obviously, she needed an option of “something else” to keep the conversation going with that one!

I'm really encouraged by how far we've come in the last 10 years in our attitude about presenting young kids with communication technology. While we may have room to grow, "we've come a long way, Baby!!!"

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P.S.--My apologies for the goofy formating. :0( I'm just learning Blogger, and what you see in on your design page isn't always what you get when it's published! Thanks for bearing with me...and if you have any tips on how to get formatting consistent, I'm all ears!!!

Onesies extenders

I found this great idea for onesies extenders that I just had to share! I know, I know, we're in the middle of talking about ideas for non-verbal communication, but this is just too good to pass up. There is someone, somewhere, who could use this information today and it deserves to be shared.

Kimbo, at "A Girl and a Glue Gun," posted a wonderful tutorial for sewing cute and very practical onesies extenders. The question comes up among families with kids-bigger-than-toddlers quite frequently about where to find large-sized onesies. There are a host of reasons:  protecting diapers from busy hands, hiding g-tubes away from still other busy hands, keeping undershirts tucked into wheelchair pants...if you're a parent of a kid who needs to be in onesies long after their size is commercially available, go ahead and insert your specific reason here: ___________________________.

Kids tend to grow long and lanky after toddlerhood and the first sign of "shrinking" onesies is seen at the crotch rather than in the width around the chest. Kimbo's solution is simple, inexpensive (unlike the speciality adapted onesies--OUCH!), fairly quick, and requires very minimal sewing skills.




So, many thanks to Kimbo. Enjoy!

The Best of the Best Assistive Technology and AAC Websites

Recently I've had some requests for a handout from a presentation I gave in the Spring of 2009 on great websites useful for assistive technology and AAC. I really want to get this out for folks to use, although I have to admit that it will be a few days before I can check out each of the links to make sure they are still functioning. It's tough for me to put something up before I've had a chance to be certain everything is current, but part of an "adapting" mindset is that sometimes we can't let ourselves get bogged down in perfection. Given how much is on my plate today and over the next few days, "good enough" is just going to have to suffice.

So, with pleasure, I present "The Best of the Best AT/AAC Websites." Enjoy!

Here's a link to another location on the Web for "The Best of the Best AT/AAC Websites" at Google Docs, if you are unable to download from Scribd.

Rose-Marie

Materials for non-verbal communication, Part Two

Yesterday we left off figuring which type of symbol your child can use best to express herself. This can take some time and experimentation, and that's just fine. My own daughter went straight into simple line drawings and that worked well for her.

Today we'll look at backgrounds and sizes of symbol cards.

Card size is determined by several things. The most important consideration is your child's visual and developmental needs. Very young children and those who have difficulty seeing tend to do better with larger symbols, such as 3" or 4" squares. This size is also sometimes needed if children require a large target to swat. 2" is a fairly standard size used by many kids and classrooms because it's still easy to see, and has the advantage of being large enough to be handled individually or pointed to on a board of several symbols. Symbols smaller than 2" can be a bit tricky to use (mostly for the person communicating with the child!) and are usually reserved for children with AMAZING pointing abilities or for access on computer screens.

Situations also dictate symbol size. If you are adapting a book to read along with symbol support (I'll cover this in a future post), the size of the book may require smaller symbols just so they will fit. If you need your child to make LARGE head or arm movements so you can see them easily (i.e.: watching in a mirror while riding in the car...be sure you are a PASSENGER interpreting your child, not the driver!), you might need to make oversized symbol cards for that situation. And here, I must digress to share a heart-warming story about large symbols...

My daughter had the most FABULOUS kindergarten teacher ever! This wonderful woman was a general education teacher embracing A, with all her unique challenges, into her typical classroom. Mrs. C had never had a student like my daughter before but she adjusted with grace and style. We created large yes/no cards--5 or 6" across and laminated onto cardboard--so A could respond to questions during circle time when all the students sat on the floor gathered around the teacher. In a fit of sheer brilliance (maybe it was frustration, but I consider it brilliance), Mrs. C asked ALL the students to answer her questions "talking with your eyes, the way A does." The cards were large enough that the whole class could respond with only their eyes...and thus the "silent response" was born. Mrs. C discovered that this response style calmed her enthusiastic little crew on those wiggly-noisy days when a productive circle time would have otherwise been impossible. Best of all, it gave the kids practice with A's communication and made them more watchful partners. I don't know if it helped A feel more blended into the group or an honored member but, either way, she loved it. Mrs. C had always taught her students sign for the letters of the alphabet, which I admired because it built an appreciation for an alternate way to speak (and it kept busy little kindergarten hands doing something constructive). Now the students had several non-verbal strategies to communicate...valued, natural, normal methods. How blessed are they to bring such an outlook to life!

Symbols don't have to be printed on colored backgrounds, but there are some benefits to color-coding. When children move from selecting between a few symbols to a whole board, color codes help them find the symbol they want more quickly. Color codes are especially helpful when children start combining symbols into phrases. But probably the biggest help is that they remind the adults talking with their non-verbal kids to pay attention to the kinds of choices we are offering. Are we teaching and talking only about things? Are we giving our kids chances to request activities? To comment or ask questions? Are we modeling and offering language rich with descriptors? When our symbols are color-coded, a quick visual scan at the options we have set out will answer that very quickly! Remember, just as the nutritionists tell us to "eat a rainbow," make sure you also "speak a rainbow!" The corollary is to make sure our children also have the opportunity to speak rainbows. If ever we find ourselves offering choices from only one color category, we need to change what we are doing.
 
The most important thing with color coding is to be consistent with the colors you chose. Fitzgerald (1954) created a key that is the most widely used today in high-tech devices, so it is a good one to start practicing with early on. In fact, if you suspect your child will someday move onto a computered voice output device, you might check out what colors are used on these devices and incorporate them from the beginning (i.e.: VS Communicator used on the Tobii devices assigns purple to items in the "places" category, light gray to "time" items).  

Goossens', Crain, and Elder (1992) created another key for color-coding that was the standard for use in special ed preschools for years, although I don't know if that is still the case today.


Color coding can mean printing on colored paper (which means you need to be very organized and plan ahead), printing solid colored backgrounds (if you own stock in a company that makes printer ink refills), colored in with highlighter pens (if you have unlimited time) or printed with colored borders (for those of use who have to limited money AND time). Three guesses as to how we color code at our house...I have neither time nor money!

One quick side note:  I do print YES on a solid green background and NO on solid red. It makes for some quick looking!

As we talk about sizing and adding colors, making the symbol cards starts to get more time consuming if you are using a word processor. If there is a way you can afford--or find funding for--a commercial symbol creating program, you will thank yourself.




Materials for non-verbal communication, Part One

You and your non-verbal child are probably already using some tools to communicate. Even tiny babies start early with objects, so let's begin there.

"Objects" would be just what you expect...the very toy, book, DVD jacket, snack food, shirt or whatever other item you might be talking with your child about. If you hold up Goodnight Moon or Bartholomew Bear as you offer to read your baby's choice and she points to Ba Bear, she has just used the book as an object to express her choice. It's an intuitive thing for both parent and child to do, and can be a very convenient way of incorporating choice-making in a natural way.

Even though my daughter is a teenager and capable of reading, we still grab objects when they are the most convenient, natural option. If she's choosing a movie, why not simply hold up the DVD jackets? It's quick and involves no extra work of creating a symbol to represent each movie. The same process goes for choosing outfits to wear or music albums. Sometimes it's appropriate to be able to select from a whole library of options, but when we need a quick choice, the simplest method is to snatch up the actual objects.

Some speech therapists subscribe to a theory that we must begin with the most concrete of symbols--objects--and progress through a specific sequence towards less concrete ones. My child development background causes me to cringe at that idea; I say we figure out what works for a child where they are now and start meaningful communication at that place. Personally, I believe that by the time we realize a child is not going to use speech, they have already had a great deal of practice with objects as a means to express their choices. Most will be ready to move to some form of symbolic expression about the time their peer group is learning to talk unless they have a visual disability and can only decipher meaning by touching a 3-dimensional object. If your child pays attention to illustrations in the picture books you read together, particularly if he looks to an item you mention specifically, you know he is capable of moving to a symbol system.

Paper symbols are easy to use and store (okay, storing the symbol cards can be a bit of a challenge, but folks have come up with some clever systems over the years). Symbols come in several varieties, each with their own benefits and drawbacks. While I'll present the paper symbols from most to least concrete, please don't think your child has to "progress" through every type! One will probably have greatest meaning for your child, and that's where you jump in.


1) Photographs, such as these from http://www.wpclipart.com/:


Ayrshire                 carrot 3

Real pictures of real items and actions can have very clear meaning. It is important to highlight in a photo ONLY the idea you are trying to have your child express. If you take a photograph to represent the child's pet, for example, ONLY the cat should appear in the photo...no living room, no kitty toys or food dishes. The cat's head or body would be photographed against a plain background, clearly identifiable as the cat. If you want to show "running," narrow in the focus to a single child running across an open field or blacktop rather than capturing the whole playground in the field of view. This visual clutter distracts from the meaning of the photograph. Become close friends with the crop tool if you take your own photographs. You might want to explore some of the commercially produced photo symbols.



 Clear photograph of "egg" with no distractions. It could be improved with a higher contrast background.


  Confusing picture showing "eggs." The child might focus instead on the bag, the arms, the shirt, the idea of "carrying..." Even if you were to draw a circle around one of the eggs to highlight it, there is still too much visual information.

Advantages of clearly photographed objects as symbols:  smallest cognitive jump from objects, easily personalized for the people/places/objects in the child's world, any item or activity that can be captured on film can become part of the child's vocabulary.

Disadvantages of photographs:  complexity of photos can be distracting (ie: child studies people's faces rather than making choices), cost of colored ink, learning curve for taking/editing excellent photos, challenge of illustrating abstract ideas (ie: how do you photograph "on" without the child being distracted by the objects in the photograph used to demonstrate the concept?).

2) Realistic drawings, like this: 
cow sketched
(http://www.wpclipart.com/)

carrot at rest
(http://www.wpclipart.com/)
         
These share some of the same advantages and disadvantages of photographs. Drawings tend to be fairly obvious. Sometimes the detail can be distracting, especially if there are a large number of choices presented at once.

3) Line drawings, such as these PCS symbol from Mayer-Johnson:

These can be printed in color or, for higher contrast, in black and white. Simple line drawings have the advantages of being quick to recognize from a large number of choices, drawn quickly if you are artistic, and purchased commercially. A disadvantage for some children is that they are more abstract than either photos or realistic drawings.

4) Words. Once kids can read, they may be able to use written words as a "symbol" choice. After all, words are symbols that literate people use every day to gain and send meaning. Words can be printed on cards or written on dry erase boards, provided the letters are large enough to support the child's visual needs. Advantages to words as symbols are that the set of choices is limitless and meaning is clear. Disadvantages are that children must be able to read and that the possible choices are not always visually distinct, which slows scanning across the available choices.

(courtesy of Mayer-Johnson)
Let me state a bias here that all paper symbols should be labeled. This not only helps develop awareness of the written word, it clarifies for everyone just what the symbol means! As hard as we try to make clear the meaning of a photo or line drawing, sometimes they are still a bit ambiguous. A label addresses this problem.

Paper symbols can be made with several commercial software programs. These programs tend to make the process of creating symbol cards quite efficient. As your child's vocabulary grows, you may find this to be a wise investment. Symbol cards can also be made in a word processor by inserting pictures or drawings into a table. While this is a time intensive process, it is an inexpensive way to get started...and it's something you can do today.
Tomorrow we'll look at symbol size and color. In the meantime, today would be a good one to try a variety of symbol styles to see which style works best for your child.

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You might also be interested in:

Resources for Free Communication Software

Materials for Nonverbal Communication, Part Two

Getting ready for non-verbal communication...

When most of us think about becoming parents, our dreams include the sweet things our children will say out loud. We imagine the cute babbling noises, the pet names our children will invent for their favorite blanket or toy, the "I love you's;" we know that we'll look back...in twenty years or so...and laugh at those innocent social blunders our little ones will make in front of strangers.

When it becomes clear our children won't be using verbal speech, those dreams are dashed. We are left without much direction, because most of us are only familiar with traditional speech, or perhaps sign, as a means of communicating. It feels pretty overwhelming and it's hard to know where to start. Our family was in that same boat, even though my own mother was a speech-language therapist and I taught special ed. The world of non-verbal communication is pretty small, but the navigation isn't so bad. There are some amazing speech therapists around the world who have dedicated their lives to helping our kids and they have developed creative ways to help our kids communicate even without speech. I am deeply indebted. These brilliant pioneers have helped me adapt to a world of non-verbal communication.

The very best first teachers, though, are our own kids. [Warning:  my bias is going to show here, as my child development background shows very strongly.] ALL kids start life communicating without verbal speech. Have you ever heard a newborn spouting off full paragraphs? Of course not! They learn to make little signs to us--cries, smiles, coos, waving arms and kicking feet, longing looks--and we respond by giving them what we think they need. Over that first year, they shape our responses and we shape those signs. While we surround our babies with an abundance of talk, song, stories, we don't expect them to repeat these back to us just yet. We learn to read our babies' expressive signs. Together we learn to communicate without words. This is what non-verbal communication is all about. It is fairly intuitive...and it carries over into more "standardized" non-verbal communication. While it may feel daunting to think about helping your child develop a method of expression that fits outside the mainstream, try to view it as an extension of what all children do instinctively. We are just expanding on that.

There are physical and cognitive limitations to deal with, of course. Some children have the ability to point or touch while others cannot control the movements of their hands. Some point eloquently with their eyes while others have no vision. Some wish to convey abstract concepts early on while others will be rooted in concrete thinking for a long time. Just as we individualize our responses to our newborn infants, so we will be individualizing for our children as they grow.

The place to begin non-verbal communication with any child is with the mindset that he or she is already expert at it. And really, we as parents are not too bad at reading those early signs. It isn't all that foreign or mysterious. It is our job to help them shape their expressions so they are more easily understood, and there are tools and techniques available to make that happen. That isn't so bad, now, is it?

Tomorrow we'll take at look at materials you can use for touch or eye gaze responses. I'll bet some are things you are already using...

Finding comfort in Psalm 139

Psalm 139 has faithfully carried me through hard times and celebrations. With delighted anticipation, I read Psalm 139 nightly to the children growing in my pregnant belly. I read it to my daughter A when Rett syndrome began stealing her skills and I needed a reminder that God is truly in control. At her diagnosis, I read it with her as more of a prayer to build my faith in God’s control. I still read it often when I need to hear God’s promise of His deep caring. I insert A’s name to remember how precious and perfect she is. There is a design to her life that I don’t need to understand (a good thing, since I don’t see the bigger picture) and that design is flawless.
I find myself clinging to Psalm 139 for comfort and promise right now.  Uncontrolled seizures--again--compromise A’s skills and alertness. It's a tough time for her and so for me as well, sharing her pain by proxy and suffering my inability to kiss the hurt and make it go away.
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 Psalm 139

1O Lord, you have searched me and you know me.
2You know when I sit and when I rise;
You perceive my thoughts from afar.
3You discern my going out and my lying down;
you are familiar with all my ways.
4Before a word is on my tongue you know it completely, O Lord.
5You hem me in--behind and before;
you have laid your hand upon me.
6Such knowledge is too wonderful for me;
too lofty for me to attain.
7Where can I go from your Spirit?
Where can I flee from your presence?
8If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9If I rise on the wings of the dawn,  
if I settle on the far side  of the sea,
10even there your hand will guide me,
your right hand will hold me fast.
11If I say, “Surely the darkness will hide me,
and the light become night around me,”
12even the darkness will not be dark to you; 
the night will shine like the  day,
for darkness is as light to you.
13For you created my inmost being;
you knit me together  in my mother’s womb.
14I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
15My frame was not hidden from you,
when I was made in the secret place.
When I was woven together in the depths of the earth,
16your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
17How precious to me are your thoughts, O God!
How vast is the sum of them!
18Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.
                                             New International Version


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What verses bring you comfort when your child is going through a rough patch? Does one stand out for you as being especially helpful?

Adapting...to the Alphabet Soup

What a busy week that has called for some major adapting! We've had an EEG, an IEP, worked with the SLP on some AAC reports...and for some letters unrelated to disability, our DSL was down temporarily.

So how have I kept my head above water? I've had to adapt my schedule and my expectations to deal with all this Alphabet Soup of acronyms. You'll notice I haven't been blogging. My house certainly isn't ready to entertain pop-in visitors and my family has been eating "semi-homemade" meals rather than ones made from scratch. I've had to choose between brushing my teeth or flossing them (brushing always wins out, not to worry). But everybody is healthy and fed, on time to their appointments, dressed in clean clothes and holding it together. When the alphabet jumble heaps up, that's enough to ask for.

To add one more thing to the mix, our weather has been unexpectedly gorgeous. This means the outdoor chores related to the garden (harvesting and processing the last of the summer veggies and getting the beds ready for winter) have been calling. Relentlessly. I have a choice to let this stress me, because it's another demand on my time, or a choice to find solace in this quiet retreat away from the hodge-podge of appointments and meetings. Life is what you make it; I choose to find this distraction and exercise a comfortable place to leave the Alphabet Soup behind.

Eye Gaze Techniques

Here are some additional pointers about communicating with eye gaze using objects, symbols or words. I left the post as I wrote it for the Rett Girls AT Ning because it didn't really seem to call for any changes. There are some concepts repeated from Friday's post but these are very important to internalize. If there are any things you would like me to elaborate on in the future, would you please drop me a note or leave a comment? Thanks!

I posted these suggestions on using eye gaze to another list, but thought maybe it would be helpful to repeat here. My daughter uses eye gaze to communicate, what I have learned is from her and other eye gazers I've worked with informally. Other folks' experiences may vary from ours, but here is what our experience has taught me:

1) Just because the concept of eye gaze is simple, reading eye gaze is not necessarily easy. We need practice and experience to become competent partners. Not all kids use the same techniques, in part because the end goal for each child may not look the same (see #2).

2) Eye gaze response procedures should keep in mind technologies to be used in the child's future. If a child will be using a dwell-click with head mouse software, for example, then it is important that they learn to hold their gaze to a choice for a specific length of time. Children who will not be advancing to a head mouse may find it beneficial to confirm their choices with eye contact to the communication partner, especially if they are socially motivated.

3) Similarly, if head mouse use is in the child's future, helping them learn to turn their head along with their eyes will support that technology. This can roughly be considered "nose pointing," although the child is merely directing the nose toward the choice, rather than touching it with the nose. If head mousing is not in the child's future, it's fine to hold the head still and cast long sideways glances with the eyes.

4) Motor ability must be considered. The length of dwell to a choice should be reasonable...five seconds (a standard dwell time expectation in too many IEP goals, sad to say) is WAY (WAY!!!) too long for most children, both in terms of head stability and attention span. Try it...five seconds is an ETERNITY and it slows conversation down to a pathetic pace. At our house, .90 seconds is a good dwell time and doesn't interfere with the flow of communication.

5) Positioning yourself as a receiver is very important. You must be able to see the child's eyes clearly. However, some children fixate on the face of the reader, so you need to be flexible. Head-on (180*) will work for students who do not fixate on faces, but for children who are hyper-fixated on faces, an angle just over 90* may be more appropriate. You learn from the child what they need as far as positioning in relation to the partner.

6) Children with hyper-fixation to faces may benefit from loose symbols held side-by-side in front of the reader's face, then slowly moved apart. The child's eyes will (hopefully!) follow the intended choice as they move.

7) Boards intended for finger-pointing tend to have symbols spaced too closely for all but the most skillful eye gaze readers (and users). Loose symbols allow you to distance the choices at optimal points from the user. These can be held in the hands or affixed to velcro-sensitive boards (I personally like 3"-wide strips of indoor/outdoor carpet mounted to mat board, 15-18" long. Post-It makes poster board that can be cut into strips that holds symbols temporarily as well).

8) Not all days are necessarily the same. Some "off" days may require few choices spaced at farther distances, while other "on" days may allow a child to handle many choices placed closer together.

9) Along these lines of "off" and "on" days, if the child suffers neurological swings, it is imperitive to tailor our expectations to the child's ability at the time. This may sound basic, but it is a point often overlooked in our hurry to take data.

10) Some children do very well with fixed frames. These are nice because they free the partner's hands and can often hold many choices. There are directions for some wonderful PVC frames online (
http://www.cdl.unc.edu/link/Tech-It-Easy/Tech%20It%20Easy/Tech%20mo..., http://www.everhart.leon.k12.fl.us/downloads/pvcbook.pdf and others). There are also commercial e-Tran frames of Plexiglass (Cogain and others). Again, you must keep in mind the child's preferences and tendencies to fixate...

11) The goal of eye gaze communication is COMMUNICATION! It is NOT testing! Kids pick up on the fact that they are being heard or being tested, so make sure you honor what they tell you!!! This is probably the single most important point in all the discussion of eye gaze. For some reason, we tend to doubt eye gaze responses. This is because of our OWN insecurity in reading the answer correctly. If we honor a child's response, they learn to trust us as communication partners. If they indicated what they intended, we validate their answer. If they answered in error, we STILL validate their answer and demonstrate that we honor what they say. The children learn they must change their strategy to communicate the accurate answer and that they must find ways to negotiate to get what they had meant to tell us.

12) When you are unclear of a child's answer, DON'T repeat the same question. Ask it a different way. Try asking it in a way that would require they show a different answer ("Do you need more time?" becomes "Are you all done then?"). Show respect by letting the child know that you are the one having difficulty understanding; it is not the child's fault.

13) Try to keep the same placement of symbols offered for choices. This allows the child to develop motor automaticity. You may start to see eyes heading to a location before a symbol is even offered; this definitely suggests the child has achieved motor automaticity.

14) Not all children need to demonstrate "scanning of all the options" before making a selection. Motor automaticity may come to play, as well as peripheral vision skills. This does not mean kids aren't expected to know what all the choices are, but it does mean that "scanning" them may not look quite like we expect. An example is this: A teacher offered my child yes/something different/no in the same order each time (hurray! Way to build motor automaticity!) but would not accept the answer until she had gazed at each choice first. This is both unnecessary, slows communication, and discounts motor automaticity.

15) As soon as possible, eye gazers need to have introduced an option to indicate that what they want to say is not among the choices. This can be most anything ("something else," "not here," "different idea," whatever works for you and the child), but it is not fair to force a child into choosing only between choices they don't really want. Otherwise, the only option we give them is to NOT choose...and then we've set them up to be labeled as "non-communicative."

There are usual communication strategies that we can't forget: motivating topics, making the child responsible for sharing information that they alone would know (highly motivating!), respecting the answer, GENUINE conversation...

I hope this helps. Again, it's just what I've learned from walking in the trenches.

Rose-Marie



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You can find more like this here:

"She talks with her eyes"

"Yes," "no," maybe so...

"She talks with her eyes"

"Not being able to talk
is not the same
as not having anything to say."
                       Unknown

One of the biggest challenges my daughter faces is being unable to speak. She has thoughts, wishes, dreams, needs, frustrations...but she cannot tell them in words. Because of motor issues that prevent her from using her hands for gesturing or sign language, she has only her eyes and her facial expressions to make herself understood.


Her silence lead me to dig deep into the world of Augmentative and Alternative Communication (AAC). I feel so blessed to have been trained in Special Education because it provided some excellent resources. One of those was the mindset that "if something doesn't work, look for another way."


Over the next few days, I'd like to share rewrites of some posts I've contributed to professional AAC and AT (Assistive Technology) listservs. I think the messages they carry are critical for all children who rely on their eyes to communicate.


Below is a rewrite of an entry I wrote on May 29, 2008 for the Rett Girls AT Ning on the "Principles of Communication." [Side note:  As some of you are aware, while Ning.com has generously grandfathered educational groups under their free use policy, they have otherwise switched from being a free forum to a paid service. When a well-respected service such a Ning switches over from free to fee, I get a bit nervous that information will become difficult to uncover. One reason for reposting is to keep this information available to anyone who might benefit from it. Keep your fingers crossed that Blogger.com will continue providing its services free of charge!]


Here are some very basic principles on non-verbal communication. We have found them to be really important for our daughter before ANY assistive technology interventions can be successful. This isn't an exhaustive list at all, so I hope others will add from your experiences! I wish I had more time at the moment for a longer list and great detail...sorry!

1)  Presume competence. Children with motor apraxia issues face enormous challenges and it's really difficult for them to show what they know. Insist that others speak respectfully to the kids as well. Insure they are surrounded by opportunities for receptive input. What slips out in the way of knowledge at the most unexpected times can be amazing.

2)  Hold high expectations. Kids sense this and will work harder for people who convey belief than they will for those who convey doubt. Children are also highly perceptive of times when people expect little or nothing from them. This is exactly what they will hand back.

3)  When you are communicating, CONVERSE, don’t “test!!!” Take answers at face value. If the answer doesn’t make sense or you think the child is fixing to one side, rephrase your question to require a different response from an answer on the other side. Let her know YOU are the one having difficulty understanding what she means by her answers. Just don’t keep hammering the same question. Boredom from repetition can be a problem. It's ok to "test" when you ARE evaluating, but remember not to let conversation digress into tests.

4)  Maintain consistent placement of answer choices. This leads to motor learning. Try to place them in the same order left to right as you speak, to reinforce reading direction. So, if you consistently ask "Do you need more time or are you all done?," then put “more” on the child’s left and “all done” on her right. If the child works with a variety of staff during the day, it may help to mount choices permanently on choice strips so everyone is presenting choices with consistent placement.

5)  If personal connection to others is a higher priority to the girl than giving a response (hmmm, wonder where I learned about this one! Does it sound familiar?), it helps to have loose symbol cards that can be held side-by-side to block the view of your face. This may encourage her to look at the response; as you slowly pull the cards apart, her eyes may follow the intended symbol card. Children who are capable of finger pointing may respond more easily if cards are laid on a table to get them out of line with the speaker's face.

6)  Inconsistency is the one consistency girls with Rett syndrome--and some other neurological disorders--have. Many factors, both visible and internal, can be at play without our awareness. Children may be capable of selecting from 8 choices one day and only 2 the next, so be flexible. While we we want to set up to encourage a variety of response modes, such as pointing or hitting switches, a child may not be capable of that physical action on a given day. If that is the case, remember that eye pointing is still a valid form of response.


7)  I must underscore that physical discomfort will interfere very much with communication. For girls with Rett syndrome, it is often gastrointestinal, but there are many other sources. It's really tough--and frustrating!--for the girls to pinpoint and communicate what exactly is hurting them during the pain episode, but they may be able to do so after the pain is relieved. With repeated practice and shortening the time between the episode and the questioning, the girl may learn to communicate about the pain while it is happening. She may also be more adept at communicating what will relieve the pain than to talk about the specific pain itself, so as is age-appropriate, talk about the treatments and medications she receives in connection with her discomforts. At age 14 now, our daughter has a high degree of participation in relieving her miseries and she is right about it every time! Keep in mind we only offer things that could not hurt her if she misjudges (an air venting air, an orthotics check, a heating pad, Advil, Tylenol), not prescription meds.

The more we demonstrate trust that our children are communicating meaning to us, the more trust they will have that we are worthwhile listeners. Can you imagine how overwhelmingly frustrating it must be to muster all your energy into responding to a question, only to have your answer overlooked or dismissed? If that happens too often, anyone would withdraw their trust. If we want honest, reciprocal communication, we have to trust our children...so they can trust us.

--Rose-Marie


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Additional information like this can be found here:

Eye Gaze Techniques

Getting Ready for Non-Verbal Communication

Materials for Non-Verbal Communication, Part One

Materials for Non-Verbal Communication, Part Two

So what is Rett syndrome anyway?

I scoured the most respected sources for a good definition of Rett syndrome to put out to you this afternoon. The problem is that most sound so clinical. The majority spout off symptoms one after the other without giving pause to the life-impact each carries. A few personalize the definition in ways that help express this impact, but at the cost of conveying the spirit and determination that makes our girls so admirable.

So I present to you a brief definition from the Genetics Home Reference (U.S. Library of Medicine):

"Rett syndrome is a disorder of brain development that occurs almost exclusively in girls. After 6 to 18 months of apparently normal development, girls with the classic form of Rett syndrome develop severe problems with language and communication, learning, coordination, and other brain functions. Early in childhood, affected girls lose purposeful use of their hands and begin making repeated hand wringing, washing, or clapping motions. They tend to grow more slowly than other children and have a small head size (microcephaly). Other signs and symptoms can include breathing abnormalities, seizures, an abnormal curvature of the spine (scoliosis), and sleep disturbances."

I will paraphrase and personalize that...

 You begin, most often, with a healthy baby girl and delight in how she is growing and developing. At some point between 6 and 18 months (though there are variations that expand this window of time), she experiences some confusing and sometimes painful changes in her body. She stops talking and pointing. She can't pick up Cheerios or her sippy cup any more; instead, she sucks on her fingers or clasps her hands together from waking till bedtime. She may lose some or all of her ability to stand or walk or run. She develops excruciating heart burn or constipation (or both), but she can't tell you where she hurts. Her ability to coordinate muscles for chewing and swallowing may begin to disappear. She may begin to have seizures. She is terrified by the changes happening inside her and frightened that you can't make them stop. This may cause her to become irritable, inconsolable or withdrawn.

You watch what is happening and panic. You love this little girl absolutely and know how bright she is. You heard her communicate clever ideas just weeks or months ago; surely your little one's mind has not been lost in this physical decline. You watch closely and you do see it, between the crying and vomiting and fits of sheer frustration. When the world is not overwhelming her already-overwhelmed body, you see her learning. The spark is not gone. She is in there.

You work with your daughter to help her cope: finding medications to stop the heart burn and constipation, learning her signals to indicate she needs an escape from sensory overload, perhaps switching her to a g-tube so she won't have to battle the terror of choking during meals. Once some of the physical problems are corrected and she is given a new set of adaptive strategies, your daughter is able to emerge from the broken physical shell. She once again shoots those dazzling smiles that melt the heart of the toughest logger. She communicates with her eyes now, sometimes with deep layers of meaning that do not hit you until days later. You were right all along about her spark burning inside. You can appreciate her strength and courage in the face of such huge challenges. You watch her dogged determination as she struggles to perform the simplest of tasks. With every ounce of your being you wish her world could be different, but yours has become all the richer because of her.

Check out more about Rett syndrome at the following websites:

http://www.rettsyndrome.org/

http://www.rsrt.org/about-Rett

http://www.girlpower2cure.org/

October is Rett Syndrome Awareness Month

Two little words: Rett syndrome. We had never heard them before our daughter began to show its signs. We could never have dreamed how much those two small words, those three syllables, would call for us to adapt our lives and our thinking.


Lavender Rett syndrome awareness ribbon


Shortly after her first birthday, when our daughter A began to lose her speech, her hand use switched from functional to repetitive movements, and she started to avoid eye contact, I began to wonder if she was dealing with autism. After all, it was the one disorder I knew of through my special education training that often didn't show up until toddlerhood. My husband started researching autism on the Internet and saw the words "Rett syndrome" for the first time. It was described as a variation of autism with devastating physical deterioration. This was something neither of us could imagine for our healthy  little girl. Why, she'd never even had a cold or ear infection! We joked that there was one good feature of Rett syndrome--the girls with it did regain their previous social natures. That part sounded good but we dismissed it as a possibility.

But during A's first diagnostic evaluation at the local Children's Hospital about five months later, we overheard a resident doctor mention to his supervisor that he believed Rett syndrome should be considered. The older doctor dismissed the suggestion but the resident had hit a chord that immediately rang true with us. By that time, we had observed enough physical change to imagine how Rett syndrome could fit. Within 3 months, the experienced neurodevelopmental pediatrician came to agree that this looked like the most likely diagnosis. A few years later a genetic screen was developed for Rett syndrome and our daughter tested positive.

We were most fortunate to receive a diagnosis so quickly. Many families go months, years, a lifetime without a name for their child's disorder. The onset signs of Rett syndrome are terrifying and leave parents fearing for the future; without the reassurance that the losses will slow at some point, I can only imagine the terror these families face each day. Having a diagnosis also connects you with other families traveling the same road. When a child is born with an unexpected disability, the family can be shocked off the path they had anticipated and sent reeling in a totally new direction. The comfort of having comrades along this new route is indescribable. Equally comforting is the knowledge that researchers are working tirelessly towards finding a cure for a disorder which affects your child; without a rack on which to hang your child's diagnosis, you don't have the reassurance that someone, somewhere is working to make things better. You are also given a place to fit in and help.

October is a month to let folks know about Rett syndrome. It's a time for answers for a few families. It's a time for doctors to catch up on the latest developments in medical research into the disorder. It's a time for raising dollars to fund that research. And if you someone with Rett syndrome, it's a time for honoring their spirit of determination and courage.

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What is Rett Syndrome?