Kabuki Syndrome Network in Japan Newsletter歌舞伎ジャーナル 第５７号ver01
新しい" Kabuki Syndrome behavior survey "
I've written up a survey to fill out about Kabuki Syndrome behavior. If you'd like to participate in this survey, please let me know and I'll e-mail it to you. I'm hoping if I do this well enough, I might get it published in a journal, even though I'm not a psychologist or anything like that. The survey is intended to be filled out by anyone with a connection to Kabuki Syndrome, including people with Kabuki Syndrome. It's different from most other surveys in that I ask for descriptions of the behavior rather than just yes or no answers.
Here's the survey. Fill out the questions by adding the answers into the text. If you are filling this out for multiple people, then e-mail each to me separately. Note: this is a long survey, and may take a while to complete.
What relationship is the person with Kabuki Syndrome to yourself?
What was their birth weight?
What was their birth length?
What was their birth head circumference?
Were there any problems apparent during pregnancy, birth or early infancy? If so, list them.
How old is the individual now?
What is their current weight?
What is their current height/length?
What is their current head circumference?
Are there any vision problems?
Are there any hearing problems?
Have they had IQ or developmental testing? If so, state the age at testing, type of test, and score.
Do they have any physical anomalies that affect abilities? (eg hypotonia)
Have they had any brain imaging (MRI, CT, etc)? If so, were there any abnormalities observed? If there were, list them.
Below is a list of things. Describe how the individual reacts to them.
? loud noises?
? bright lights?
? minor physical injury, such as injections?
? scratchy clothing?
? seams in clothing?
? labels in clothing?
? wet clothes?
? sandy clothes?
? unexpected events, such as a surprise party?
? being scolded?
? others being upset?
? crowds, for example at a store?
? unfamiliar adults?
? new foods?
? new objects?
? new places?
? new activities?
? background noise when trying to concentrate?
? changes in routine, such as taking a different route?
? expected transitions, such as leaving school at the end of the day?
? being the center of attention?
? the primary caregiver leaving? (in children)
? scary or unhappy scenes in movies or on TV?
? being stared at or judged by strangers?
? car trips?
? other children?
? being teased?
? being hot?
? being cold?
? being tired?
? emotional places, such as cemeteries?
? sparkly objects?
? light touch, especially unexpected?
? hoses and faucets?
? leaving the house?
? being asked to sit still?
? being told they made a mistake?
? not being understood?
Describe the usual pattern of behaviour in these areas, and what factors cause these to vary?
? loudly do they usually play?
? active are they usually?
? much does their mood vary? Are they more often happy or unhappy?
? well do they sleep?
? long do they keep trying something which is difficult?
? often do they make eye contact?
? long do they keep playing with one toy, or doing one activity?
? do they play? (pretend, lining things up or spinning things, etc)
Answer yes or no to whether they have the following traits. If yes, describe the behaviour and particularly if there seems to be more than one type of this behaviour.
? worry a lot?
? startle easily?
? notice subtle odours a lot?
? ask a lot of questions? (if can talk)
? hurt themselves? ? bite, hit
? hurt others? ? bite, hit
? have anxiety-related health problems, such as stomach aches?
? have certain things that happen every day at around the same time, such as being tired or hungry or energetic at a certain time?
? like animals?
? cry often?
? refuse to speak in certain situations? (if can talk)
? play with their genitals?
? have nightmares or night terrors?
? hide in closets or other small places?
? have trouble getting started with activities?
? have panic attacks?
? have or seem to have hallucinations or delusions?
? have seizures? Do you notice any behaviour changes after a seizure, compared to before?
? act out sexually?
? act paranoid, like everyone is out to get them?
? refuse to go to school (if applicable)?
? often describe or draw images of violence and gore?
? echo words or phrases?
? eat a lot, or crave certain foods?
? look at things out of the corner of their eyes?
? sniff people or objects?
? refuse certain foods?
? like being squished (not hard enough to be painful)?
? stroke or finger certain things, such as a certain kind of fabric?
? do strange activities such as rocking, swaying, flapping hands, bobbing their head, gazing at their hands, spinning in circles, blinking a lot, shrugging, repetitive sounds, copying the movements of other people or tapping people or things?
? insult themselves? (if verbal)
? insult others? (if verbal)
? like books?
? sing or hum songs?
? like computers?
? have panic attacks? How often?
? act afraid of something harmless?
? often lose things?
? drag people around to communicate or play?
? have trouble with multi-step activities?
? have trouble starting activities?
? seem not to notice mistakes?
? respond literally to statements such as grab a chair?
Have they ever threatened or attempted suicide, or expressed a wish to not be alive?
Are they, or have they ever been, on any psychoactive medication (including anticonvulsants)? When did they start taking it, how did it affect them, and if they’ve stopped, why?
Do they claim they are worthless or that they feel that things are their fault, that are actually not something they can help?
Do they have behavioural ‘outbursts’ of some kind (eg tantrums)? What precipitates them?
How long do they last? What are they like when it’s over?
In infancy did they:
? cry a lot? (why)
? watch objects often?
? make eye contact?
? have trouble nursing?
Were they really active or inactive in the womb?
Answer these questions about communication:
Can they speak?
? When did they say their first word? What was it?
? When did they say their first sentence? What was it?
? How well do they speak now?
Do they use an assistive communication device?
? What is it? How do they use it?
? When did they learn to use it?
? How well can they communicate with it?
Do they sign?
? When did they start? What was their first sign?
? How well do they sign?
How do they show you they want:
? an object?
? an activity?
? more of something?
How do they show you they don’t want:
? an object?
? an activity?
? more of something?
How do they show you they’re interested in something?
Can they follow verbal commands?
With the following skills, state whether they can do them, when they learnt if they can, and if they do it oddly, describe how they do it:
? lift head
? crawl/bum shuffle/etc
? walk up stairs
? walk down stairs
? ride a tricycle
? use the toilet
? dress themselves
Describe how these situations are typically like:
? waking up
? falling asleep
? doctor visits
? hair brushing
? teeth brushing
Do they do any chores? If so, what chores do they do? Describe how they do them.
What do they know about reproduction?
Do they have certain abilities which are unusually good or poor compared to overall functioning?
What are they interested in?
How good is their memory? Is it better for some things than others?
In terms of academics/pre-academics, how are they doing?
Have they ever gone back to a level of ability or behaviour pattern they had outgrown, or had some other kind of marked behaviour change? If so, do you know why?
What do you consider to be their strengths?
What do you consider to be their weaknesses?
Do their abilities vary a lot on a regular basis? What factors do you think affect their abilities?
Do they pay a lot of attention to details, or often overlook them?
If any of these have occurred, describe at what age, some relevant details and how they were affected. If applicable, state if it is ongoing:
? illness in individual or family member
? death of family member, friend or pet
? foster care or adoption
? physical or sexual abuse (if a child is being abused or you suspect they are being abused, you should alert the police/social services and the parents if they are not the ones doing the abuse)
? school problems such as bullying or conflict with teachers
? new baby
This section is to be completed by asking the individual and recording their response as accurately as possible. If you are writing about yourself, simply write your responses to the questions. If it’s not possible to ask the individual these question (eg due to insufficient verbal ability) then simply skip this section. If, while asking the individual these questions, you think of other questions to ask them, feel free to add these in. Also, ask them why they gave the answers they did.
? In what ways are you like other people?
? In what ways are you different from other people?
? Are you disabled? If so, in what ways?
? Do you like yourself?
? Do other people generally like you?
? Do you wish you could change anything about yourself? If so, what?
? Do you wish you could change the world? If so, in what way?
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