Site Map

Home

For new families

Hydranencephaly
Information 


Our Rays of Sunshine

Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Health Conditions

Prenatal Diagnosis

For Grieving Families

Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

About us

News

Contact a Family

Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base

Contact Barb

Printed Materials

Fact Sheet

Fact Sheet Brochure

Frequently Asked Questions

FAQ Brochure # 1

FAQ Brochure # 2

FAQ Brochure # 3

FAQ Brochure # 4

FAQ Brochure # 5

FAQ Brochure # 6

FAQ Brochure # 7

Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

Personal Dictionary or Log of Intent

A program that was involved with Kayda at school had us draw up a personal dictionary or log of communicative intent. It helped us realize just how much she was able to communicate. I am including the latest one we did for her as an example. I’ve also included blank forms in the appendix for you to copy and use for your child.

 

I found that this “dictionary” was very helpful whenever someone other than myself was looking after Kayda. I didn’t use the “scripted’ questions very often but they are a good thing to keep in mind as you help your child communicate to the best of their ability. At school, a dictionary with responses appropriate to school time was done as well. It was enlarged and posted on the wall of her classroom so that the children were able to “interpret” for Kayda.

 

Kayda’s Personal Dictionary

Communicative Intent Log

 

Vocabulary Used with Kayda:                                   
Yes/No: In response to a question:Yes: smile
 No: looking away, pushing something away, or no  response
For Pulmicort & Ventolin: mist                                  
Nilstatin: mouth medicine                                              
When something is all finished: All done                         

 

Behavior Observed

“This is what I do.”

Intent/what it means

“This is what I’m trying to tell you.”

How to respond

What you can say and or/do:

  1. Identify behavior
  2. Interpret behavior
  3. Respond

Vocalizations: Please note: almost all of Kayda’s vocalizations mean something specific. You need to use clues from what’s happening around her to find out what she’s wanting to communicate.

 

 

1. Yelling, grunting, whimpering

1a. In morning: wants to go in stander.

  1. I hear you whimpering/yelling, etc.
  2. I think that you want to go into  your stander.
  3. I’ll go and get it for you.

After being in chair/stander awhile

1b. uncomfortable/needs position change

  1. I hear you yelling/grunting, etc
  2. I think that you would like to sit in your chair/lie down.
  3. I’ll go and get your chair/side lyer

In chair or stander without tray

1c. wants her tray on

  1. I hear you yelling/grunting
  2. I think you want your tray on.
  3. I’ll go and get it for you.

Tray on, no toy

1d. wants a toy, or a different toy

  1. I hear you yelling/grunting
  2. I think you would like a toy or a different toy.
  3. How about this toy?

No one around

1e. wants to be with other people

  1. I hear you….
  2. I think that you don’t want to be by yourself.
  3. Come over here with….

2. Whimpering

2. Brace is bothering her

  1. I hear you whimpering Kayda
  2. I think that you want your brace loosened
  3. Here I’ll undo your straps a bit.

3. Crying

3. Extreme pain or scared

  1. I can hear you crying Kayda
  2. I can tell that you are scared/in pain
  3. Let’s do ____ to make it better.

4. Half laughing, half crying

4. Afraid or worried

  1. I can hear you half laughing, half crying.
  2. I can tell that you miss____ or are scared of____
  3. You’re ok. _____is here (or I’ll call Mommy)

5. General vocalizations in response to something. (person entering area, hearing a noise:

5. Look at that, Hi I’m here

  1. I hear you Kayda
  2. Hi, ____is here.
  3. You heard that didn’t you Kayda.

6. Single vocalization

Calling attention to something.

(could mean story/video is over, toy has fallen, where are you? , etc)

  1. I hear you Kayda.
  2. 2. You want a new story/video
  3. 3. I’ll put ____on for you.

Eye Movement:

1. Eyes moving rapidly, head still/listening

1. Recognizes sound

  1. I see your eyes moving.
  2. 2. I can tell that you recognize _____
  3. 3. Let’s listen to ____ or do ____ again.

2. Eyes suddenly stop moving when she hears a word, voice, story or song

2. Recognition/curious

  1. I notice your eyes are still
  2. I can tell that you are listening, that is ____
  3. Let’s do _____ some more.

3. Kept up or down, fixated

3. I’m bored, I’ll be back in a minute

  1. I can see that your eyes are stuck
  2. I can see that you are bored
  3. Let’s do _______

4. Fixed to far right

4. Stretching, muscle spasm

  1. I notice that your eyes are over to the side.
  2. I think that you’re having a stretch
  3. Ok, let’s do ______ (current activity) some more.

5. Appears to look down

5. My hands feel something

  1. I see you’re looking down.
  2. I see that you feel something. That is ____
  3. Let’s touch it again.

Smiling:

1. Smiling in response to a question

1. Yes

  1. I see you’re smiling
  2. You’re saying yes you want _____
  3. Let’s do/get that.

2. Upper lip raised on 1 side

2. I’m listening, you have my attention

  1. I notice your lip raised.
  2. I can tell that you are listening.
  3. Here’s what we are going to do now.

3. Full ear to ear grin

3. Excited about a person/place/thing

  1. I see that huge smile.
  2. I think that you’re excited about _____
  3. Let’s go do that some more.

4. Big smile with giggles

Pleasing noise, or over tired

  1. I hear you giggling and see that big smile
  2. I think that you like that sound, I think that you’re tired.
  3. Let’s hear that sound again, or Let’s change your position/give you a rest.

Arm movement:

1. Arms fly up when moved

1. Pain or startle

  1. I see your arms fly up.
  2. I can tell that  that hurt, ouch, or surprised you.
  3. I’ll move you slowly.

2. Arms fly up when she hears a sudden noise (occasional extreme reaction: breathing becomes labored, she remains tense-usually she can be talked out of it.)

2. Surprise or startle

  1. I see your arms fly up.
  2. I think that ____ surprised you. That is ______
  3. Let’s explore the noise that you heard.

3. Arms fly up when in new equipment or strange place

3. Worry

  1. I see your arms flying up
  2. I can tell that you are worried about ______. It’s ok
  3. You’re in a new______

4. Poking at or scratching arms

4. Discomfort or upset

  1. I see you poking at your arms
  2. I can see that you are upset
  3. Let’s lie you down/sit you up/have a cuddle/call mom, etc.

Other pages in this section
Communication
Communication Links
It Takes Two to Talk

 


 

 

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca