Discerning

I know that it is often very difficult for our kids with severe disabilities to express their emotions in the usual ways. As parents, we learn to read their feelings. Even when they are infants, we learn the sound of a hungry cry versus a tired cry.

When our children are older, we can usually tell without their ever saying a word if they are angry or frustrated or happy. I'm not sure though that we can always figure out some of the more subtle feelings, being lonely, for example, or being worried about something.

I also wonder if our children with severe disabilities can read the emotions of other people. I believe they can even if they can't always put words to what they sense.

For example, I know that Ashley can tell when I am worried. I know she can tell when I feel bad but try to hide it. She can tell when I am sad or extremely stressed, and more often than not, her emotions will begin to match mine. That makes sense as it relates to the mother/child relationship.

But how about with the other people in their lives? Can our children tell if someone is truly being nice to them, or being nice to their face and making fun of them later? Can they distinguish the subtle emotions of others? If someone tells them that they love them, but as a parent, you know otherwise just from the other actions or words of that person, do you think our children can read that? Do our children understand pity, envy, and yes, even lies?

What do you think? Even if your children can't give voice to their emotions and the emotions of others, do you think they understand? I'm leaning towards an answer of 'YES'.

Score One for MickeyD's

I found this on YouTube and just had to share. I don't believe it is ASL, but it is something very similar. I just like the easy flow of the commercial and the thought of universal communication, even if it is about fast food!

How To Speak Deaf

Since Ronnie joined our family, we have had lots of situations, mostly medical, in which an interpreter is present. It's always interesting to notice the reactions of the hearing people in the group, especially people who are there to relay and solicit information from Ronnie. What I have learned is that a lot of people don't quite understand how to have a conversation with a Deaf person and that person's interpreter.

So here are some tips that I found at Deaf News Today for communicating with people who are Deaf or hearing-impaired. If any of you have other tips, I would love to hear them.

• Make sure you have eye contact with the person before speaking


• If there is an interpreter, speak to and look at the deaf person not the interpreter


• Face the person to whom you are speaking (that helps with lip-reading)


• Stand in good lighting and avoid standing so that light is on the face of the Hearing-impaired person


• Avoid background noise whenever possible


• Move your mouth to articulate but don’t exaggerate


• Speak a little louder and slower than normal but don’t shout or drag


• Keep your hands away from your face and particularly your mouth


• Use lots of facial expressions and body movements


• If something is unclear, rather than just repeating the same thing, rephrase thoughts in shorter and simple sentences

Friday News Reel

Can you hear with your skin? Or perhaps see with your ears? Researchers at MIT think so. Check out this article – it’s pretty short – but packed full with interesting information about what our future might hold.

Using All Our Senses

If you are deaf and a passenger on a plane, how do you know what instructions and information the airline staff is giving you? If the plane you are on has landed but you aren’t allowed to disembark for an hour, would you get nervous and maybe agitated because you couldn’t hear what is happening?

Students at the Rochester School for the Deaf have been in that situation, and have come up with an idea on how to make things much better, not only for deaf passengers but for all passengers. Check out their idea here:

Students Develop Innovative Plan

And finally, because it is Friday, I thought we needed a little entertainment to kick off our weekend:

Rhapsody

Enjoy and do something fun this weekend!

How Words Feel

Back in early 2007, I wrote about using a technique called Tadoma as one more weapon in Ashley’s communication arsenal. Though almost never taught today, Tadoma was taught widely to deafblind children from the 1930’s to the 1960’s.

As I wrote in my previous entry, Tadoma, as described by Wikipedia, is a method of communication used by people who are deafblind, in which the person places his thumb on the speaker's lips and his fingers along the jawline. The middle three fingers often fall along the speaker's cheeks with the pinky finger picking up the vibrations of the speaker's throat. It is sometimes referred to as 'tactile lipreading', as the person who is deafblind feels the movement of the lips, as well as vibrations of the vocal cords,

The theory is that the person who is deafblind will be able to feel the vibrations, the positions of the lips, the air expelled, and other such physical cues, and from that might be able to learn to speak. The Tadoma method was invented by American teacher Sophie Alcorn and developed at the Perkins School for the Blind in Massachusetts. It is named after the first two children to whom it was taught: Winthrop "Tad" Chapman and Oma Simpson.

When I first began my search for more information on the technique, I found little. So, imagine my surprise when I found an article in Psychology Today, dated earlier this month, that spoke of Tadoma.

The article chronicles the path Rick Joy has followed for over 50 years in his mastery of Tadoma. Also, according to the article, Tadoma is rarely taught these days because of new technologies and medical advances for children who are deaf. But the article, and what I experience when Ashley uses Tadoma, describes something more than just a communication system. It takes human interaction to a different and more beautiful level in my opinion.

Ashley has made it very clear that the technologies of today are not her first choice for communication. Sign language and Tadoma are her choices, and I support those choices completely. Both those tools are beautiful expressions of the human spirit as well as a means of communication.

The Earlier The Better

Ashley has been a student in our school district for 10 years. And for 10 years I have had to fight to get her the support she needed to appropriately develop a communication system. The fight has been exhausting, but it has been worth it because Ashley is a fluent signer now. But not all parents have the ability or the resources to fight the battles that are emotionally and physically exhausting.

Knowing this, I was excited to hear about a new study concerning communication for children who are deafblind.

A recently completed five-year study, conducted through the Schiefelbusch Institute for Life Span Studies at the University of Kansas, adapted the gestures and noises used by typically developing infants to form a communication system for deaf-blind children.

The researchers had to find a way to make the children want to communicate a need or desire, said Susan Bashinski, a principal investigator who is now an associate special education professor at East Carolina University.

For example, they made a child aware that a toy was nearby, either by touch or by using vibrating toys. Then, they would teach a child a gesture to indicate he or she wanted the toy.

"Eventually, they have an 'aha' moment where they understand that they are not just a passive member of the environment, 'I can do this action, then you can do this and interact with me,'" Bashinski said.

Currently, many deaf-blind children barely communicate until they are old enough to start learning sign language. But they often struggle with that because they didn't first learn the gestures and noises that are the foundation for communication in normally developing infants.

Those gestures and noises have been successfully adapted to help developmentally disabled children who can see and hear, a method called Prelinguistic Milieu Teaching. The new study adapted that method for nine Kansas children between the ages of 3 to 7 with varying degrees of deaf-blindness.

Working at the children's schools, researchers sought to increase the number of times the child communicated per minute and the number of gestures. The results will be published this month in the journal Research & Practice for Persons with Severe Disabilities.

The study bolsters earlier research on the importance of prelinguistic communication and emphasizes that deaf-blind children need intensive one-on-one work to begin learning communication, said Kat Stremel Thomas, project coordinator for the National Consortium of Deaf-Blindness, which supports states' work to communicate with deaf-blind children.

She said further study needs to determine if the children move on to pick up more complex communication skills. And, she said, some way needs to be found to share what was learned with those who work every day with deaf-blind children.

"All brain research shows that the younger kids are when they get appropriate intervention, the better the outcome will be, especially in literacy and communication," she said.

Did you get that, school district? The earlier the better. If you didn’t get it, don’t worry, I’ll be sure to keep reminding you!

Where Did You Go?

I've always been a mother who believes in open adoption. I have always believed that a child can never have enough people who love them. Those beliefs were what drove me to contact my children's birth parents.

Adopting from the foster care system usually means that the birth parents' rights have already been terminated, and any paperwork I was able to view would have all reference to the birth parents redacted. Well, almost all...

In Ashley's case, the social worker was a little sloppy with her redacting. I had the birth mother's name, and I knew the area in which she lived.

I didn't do anything with that information for many years. But, about five years ago, I felt led to reach out and try to contact Ashley's birth mother. With the help of the Internet, I found an address and a phone number which I thought was correct. I called the phone number, and heard the recording.

The voice on the recording said, "Hi,this is Lisa and Lauren. We're not home right now, so please call back." I wasn't sure I had the right number, but when I heard the baby in the background, and figured her name was Lauren, I was pretty sure I had the right number. Why did the baby named Lauren make me think that?

I didn't know that Ashley's birth mother had other children. But, I wondered if indeed she had and had named her two girls after characters on the Young and The Restless - Ashley and Lauren. I know it was a leap of faith, but it felt right to me. So, I composed a letter, included a picture, and sent it to the address I had found on the Internet.

I heard nothing for two years. But one night I got a call. It was Lisa and she confirmed that she had gotten my letter.

Our contact after that was sporadic. Phone calls here and there. An email every once in a while. And then finally, I found her on Facebook. Finally, I had a small window into her life, and I opened wide the window into my life with Ashley. I hoped our relationship could grow, and indeed it seemed to be doing just that. Until last week.

Lisa deleted her Facebook account. There is no trace of her other than the comments and messages she has sent me in the past. I keep checking back, but so far she hasn't returned.

I miss you, Lisa, and really wish you would come back to Facebook or contact me some other way...

Great After School Program

My local news station ran a great story this morning about a group of New York school children learning sign language after school. I tried to find the video they ran because the children were quite charming, but I couldn't find it. I did find a written piece about the program and it is shown below. I really wish more school districts would consider this. Everytime I have heard of such a program the thing that impresses me the most is that the children love learning sign language.

New York school kids learn unique life lesson
October 29, 2008 10:06 AM


When you think of after school programs, things like sports, music and art probably come to mind.

But some children in New York City are involved in a more "hands-on" type of activity.

7th grader Stephanie Arbelaez has already used what she's learning in her after school program sign language.

"I was walking in the street and I saw this man and he was trying to get help because he was elderly and he couldn't ask for help. So I told my mom he was saying he needed help, so I told my mom and she helped him cross the street," said student Stephanie Arbelaez.

This is a different kind of after school activity once a week.

Students at St. Sebastian School in Woodside, Queens learn to sign with a volunteer sign language interpreter from the Little Angels Foundation.

On the day we visited, the kids were also working with hearing impaired young people, trying out what they've studied.

"I said, 'hi my name is Conor.' and I said, 'what's up," said student Conor Hurley

It's a chance for these children to learn something new but also something larger.

"Respect for people, all people, deaf people certainly, but all types of people. That's what this program promised to do and that's what it did," said principal Joann Dolan.

The kids started with some basic expressions, the alphabet and numbers.

But as time goes on, they're learning to say all sorts of things.

Gray is Good

One of the blogs I visit on a fairly regular basis is Ka’lalau’s Korner, written by Carl Schroeder. The tag line on the blog says “Ka’lalau’s Korner invites you to embark on your journey into Carl Schroeder’s philosophy.” Mr. Schroeder is deaf and believes that ASL and ASL only is the language of the deaf. Mr. Schroeder’s world is black and white. Anything non-ASL is gray. However, with that said, I do pop over to his blog every so often, even though I usually leave not smiling. One of his recent blog entries left me more perturbed than usual. The title of that entry is “Deaf School Bus Versus Special Ed Schoolbus.”

In his blog entry, Mr. Schroeder says “While I don't claim to have experienced as a Spec Ed student, I can only speculate from what I've read about children with cochlear implants (CI) riding on the Spec Ed schoolbus. I was also a Deaf Education teacher in a public school system that received the pupils from Spec Ed buses.” He then goes on to “compare and contrast Deaf and Spec Ed schoolbuses”.

I take issue with many of the things on his list, but the first item in the list especially irked me. At the top of his compare and contrast list is:

1.Deaf schoolbuses are full of children who communicate with each other. Spec Ed schoolbuses are full of children who are so diversely handicapped they do not communicate with each other.

I would like to invite Mr. Schroeder to ride to and from school with Ashley one day and see if his opinion changes.

• The boy that smiles when Ashley is boarding her school bus is communicating with her.



• The child that slides over in his seat to make room for Ashley is communicating with her.



• The little girl who reaches over to touch Ashley’s arm is communicating with her.



• When Ashley takes off her winter hat and throws it at the bus driver, she is communicating.



• When the aide on the bus cradles Ashley’s head during one of her seizures, communication is taking place.



• When the child sitting next to Ashley touches her chin after she burps (to indicate she should say Excuse Me), that child is communicating.



• When Ashley picks up the hand of another little girl on the bus who is crying as the bus pulls away from her mother, Ashley is communicating.



• When the children wave to each other at their home drop off points, they are communicating with each other.



• When Ashley kisses the bus driver’s cheek at the end of her bus ride, the communication is quite clear.

So, Mr. Schroeder, there is gray in the world and in that gray is a beautiful form of communication. Ashley is working very hard to learn and use ASL, but even without the fluency she will one day reach, she communicates quite clearly all day long – as do the other children on the ‘special ed bus’ about which you wrote, though "diversely handicapped" they may be.