Important:Please leave blank any questions that do not apply to your Angel!
(For example, if your Angel does not experience seizures, do not enter anything for "At what age did your Angel begin having seizures)

Multiple Angels in a family:I am really sorry folks, but this survey took so much time to develop, that I just couldn't widen it's scope to include multiple angels in all the questions. If you have the time and don't mind, please fill out the survey once for each Angel under your care. You will be given a survey response number after you complete the survey if you need to come back to update your answers. (Sorry again!)

If you have any questions or problems with this survey, please do not hesitate to contact me with your questions, comments or suggestions. If you've completed the survey and have problems with your answers, please remember to write down the survey response number that you will be given upon completion!

A very heartfelt thanks goes out to all of you in the Angel community for making this project happen!

Father's first name		Father's last name
Mother's first name		Mother's last name
Email address:		Website address that mentions your child specifically:
Angel's first name		Angel's last name
Angel's Gender(s)	Handsome Boy! Gorgeous Girl!	Angel's Date of Birth	1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 Day 1 2 3 4 5 6 7 8 9 10 11 12 Month    Year
Number of Angels living with you		Birth order of Angel (1st child, second child, etc)
Number of Angels living in group home/institution		Name of institution/group home
If living in an institution/group home, at what age was your angel placed there (age in months)?		If living in an institution/group home, how many special needs people share the home? (Including your angel)	Not Applicable 1 2 3 4 5 6 7 8 9 10 More than ten
If living in an institution/group home, How many caregivers are there?	Not Applicable 1 2 3 4 5 6 7 8 9 10 More than ten	If living in an institution/group home, please describe the kind of setting/home/insitution in which your angel lives:
Briefly state why your Angel lives in a group home:
Angel's State/Province		Angel's Country
Number of siblings (brothers and sisters)	0 1 2 3 4 5 6 7 8 9 10	Total number of children still living at home	0 1 2 3 4 5 6 7 8 9 10
Number of brothers or sisters with chronic syndromes other than AS	0 1 2 3 4 5 6 7 8 9 10	Total number of children with special needs in your care:	0 1 2 3 4 5 6 7 8 9 10
State the relationship of the primary caregiver(s) of your angel. (Ex: Both parents, mother, father, grandparents, foster parents, etc)		State your relationship to your angel. (Ex: mother, father, grandparent, foster parent, etc)
List all syndromes exhibited by siblings (other than AS) (list all, separated by commas)		Does your extended family regularly help with caring for your Angel/other children? (Include immediate and extended family: Brothers, sisters, parents, cousins, etc)	Yes No
If yes, how many hours per month does your family help with respite, childcare, therapy, etc?
Diagnosis date	1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 Day 1 2 3 4 5 6 7 8 9 10 11 12 Month    Year	Diagnosis type (del +, UBE3A, UPD, Clinical, other	Deletion Positive UBE3A UPD Clinical Other
Diagnosing Hospital		Diagnosing State/Province
Diagnosing Country		Diagnosing Doctor
Diagnosing Doctor's specialty (neurology, geneticist, pediatrician, etc)		Does your Angel have any other health problems/conditions? (ex: hypothyroidism, reflux, etc)
Common Traits The following are the most common characteristics of AS: Please check all that apply to your Angel
Developmental delay, functionally severe Speech impairment, none or minimal use of words receptive and non-verbal communication skills higher than verbal ones Movement or balance disorder, usually ataxia of gait and/or tremulous movement of limbs		frequent laughter/smiling; apparent happy demeanor easily excitable personality, often with hand flapping movements; hypermotoric behavior
short attention span Seizures, onset usually < 3 years of age Abnormal EEG, characteristic pattern with large amplitude slow-spike waves Delayed, disproportionate growth in head circumference, usually resulting in microcephaly by age 2		Strabismus Hypopigmented skin and eyes Tongue thrusting; suck/swallowing disorders Hyperactive tendon reflexes
Feeding problems during infancy Uplifted, flexed arms during walking Prominent mandible Increased sensitivity to heat		Wide mouth, wide-spaced teeth Sleep disturbance Frequent drooling, protruding tongue Attraction to/fascination with water
Excessive chewing/mouthing behaviors		Flat back of head
Does your Angel experience seizures?	Yes No	If yes, at what age did your Angel begin having seizures (Age in months)?
If yes, please select the primary/most common seizure type:	No Seizures abdominal seizures absence seizures akinetic seizures atonic seizures aura autonomic seizures bilateral myoclonus seizures catamenial seizures clonic seizures complex partial seizures drop seizures emotional seizures febrile seizures focal seizures gelastic seizures grand mal seizures infantile spasms Jacksonian seizures Laflora Disease Lennox-Gastaut syndrome motor seizures multi-focal seizures musicogenic seizures myoclonic seizures neonatal seizures nocturnal seizures petit mal seizures photosensitive seizures prolonged seizures pseudo seizures psychogenic seizures psychomotor seizures reflex seizures rolandic seizures secondarily generalized seizures sensory seizures simple partial seizures status epilepticus subtle seizures sylvan seizures temporal lobe seizures tonic seizures tonic-clonic seizures visual seizures withdrawal seizures	What medications have you tried, but no longer use? (list medications only, separated by commas - next question is for reasons)
Please list the reasons you no longer use such medications (Ex: Tegretol: No effect on seizures, Topomax: No effect on seizures)		Please list any herbal/non-traditional medicines or dietary supplements you use with your angel and why. (Ex: Flax Seed: bowel regularity, etc)
Medication and Dosages Please list the top four medications your angel uses, what they're for and the dosage you use:
Medication Name	Used For	Dosage	Age at which this medication started (In months)
Surgery's (list all, separated by commas)		What is your Angel's current weight (in kilograms - one pound = 0.4536 kilograms)
If your Angel is post-pubescent, at what age did they experience puberty (Age in years)?		What is your Angel's height, in centimeters? (1 inch = 2.5 centimeters)
Please indicate how your Angel gets their nutrition (Check all that apply):
GA / NJ / NAG / NJ Tube	Orally (spoon/bottle/normally)	Liquids only	Breast fed
If your Angel was breast fed, at what age (months), did they stop breast feeding?		Did your Angel go from breast feeding to bottles/normal foods? (Answer "no" if they went to a tube)	Yes No
If your Angel is or was tube-fed, at what age (months), did they receive the tube?		If your Angel was tube fed and now is not, at what age (months) was the tube removed?
If applicable, at what age (months) did your Angel start eating soft foods (baby food/mashed)?		If applicable, at what age (months) did your Angel start eating textured foods ?
If applicable, at what age (months) did your Angel start vomiting/gagging?		If applicable, at what age (months) did your Angel stop vomiting? (leave blank if still occurring or "0" if not applicable)
If applicable, how many times a day did/does your angel vomit?		Have you ever had to replace / buy new clothing or linens due to vomiting (destroyed clothes/linens)	Yes No
If applicable, at what age (months) did your Angel start feeding them self?		If your Angel self-feeds and uses utensils, at what age (months) did they start to use utensils? (Leave blank if not applicable)
Compared to other Angels in similar age and diagnosis, do you feel your angel is higher functioning or lower functioning?	Higher Functioning Somewhere in the middle Lower Functioning	Assertive technologies used by your Angel (wheel chair, feeding tube, Vagus Nerve Stimulator)
Assertive/Augmentative/Alternative Communication: How do you communicate with your Angel? (Check all that apply and please fill out the "other" box with anything we've missed)
PECS	VOCAL	Sign Language	Picture Boards/Sheets/Books
Simple Hand Gestures	Computer Assisted Communication	Eye/Head gestures	Non Communicative
Please list any other communications methods/devices you use (List all, separated by commas)
Please list any brand names you feel were successful and would recommend to other AS parents
Can your Angel:
Sit Up	Yes No	Age at which Angel started sitting up (Age in months)
Crawl	Yes No	Age at which Angel started crawling
Walk	Yes No	Age at which Angel started walking (Age in months)
Talk	Yes No	Age at which Angel started talking (Age in months)
If your Angel talks, how many words? (enter "full" or "partial" if vocabulary is over 100 words. Ex: "Full" describes an Angel who can speak complete sentences. "Partial" describes an Angel who can express ideas or intents with a few words)		Has your angel ever lost or forgotten words?	Yes No
If your Angel speaks, are the words mostly mono-syllabic or multi-syllabic?	Mono-syllabic Multi syllabic	Please give a sample of the words your angel can speak:
Is your Angel toilet-trained?	Yes No	Age at which Angel was toilet-trained (Age in months)
If yes, is your angel fully toilet-trained? Partially? (timed potty sessions vs toilet-on-demand/need)	Not toilet trained Uses toilet at specific time intervals Uses toilet when needed (fully trained) mix of timed and need	Does your angel wear glasses?	Yes No
Is your Angel in school	Yes No	If yes, integrated school/class on non-integrated?	Yes No
If in school, does Angel have 1:1 aide?	Yes No	Does your Angel have an IEP (Individual Education Plan)?	Yes No
Please list any non-medical therapies your Angel benefits from (list all, separated by commas) (Ex: Music therapy, hippotherapy, art therapy)		Please list the agencies that provide the above non-medical therapies for your Angel
Please list any medical/physical therapies your Angel benefits from (list all, separated by commas) (Ex: Occupational therapy, Physical therapy, Speech/Language pathology)		Please list the agencies that provide the above medical/physical therapies for your Angel
Do you receive respite services? (Answer "Yes" if you qualify for respite, but choose not to use it)	Yes No	If yes, how many hours per month?
If yes, how did you get/qualify for respite? (Please name organization or government department)		If yes, and you must recruit your own respite workers, where do you find/recruit them?
Do you receive financial assistance?	Yes No	If yes, how much per month?	$
If yes, was your financial assistance income-based? (i.e. available only if you make less than a certain amount)	Yes No	If yes, what was the maximum amount you could earn before being ineligible for assistance?	$
If yes, what age was your angel before you received the assistance? (Age in months)		Do you receive any other form of government provided assistance? (diaper subsidies, food subsidies, etc)	Yes No
Do you have governmental medical insurance (ex. OHIP, Medicare)	Yes No	If yes, what percentage of costs are covered?	%
What procedures/treatments are NOT covered by your insurance that you feel should be?
Do you have non-governmental medical insurance?	Yes No	If yes, what percentage of costs are covered?	%
What procedures/treatments are NOT covered by your insurance that you feel should be?
Do you have governmental dental insurance?	Yes No	If yes, what percentage of costs are covered?	%
What procedures/treatments are NOT covered by your insurance that you feel should be?
Do you have non-governmental dental insurance?	Yes No	If yes, what percentage of costs are covered?	%
What procedures/treatments are NOT covered by your insurance that you feel should be?
Please list any parent/community/church groups you or your Angel benefit from (List all, separated by commas)		Have you made long term care arrangements for your Adult Angel?	Yes No
Please estimate how much per month, minus any subsidies or financial assistance, you spend on: (Important:These are costs you incur ONLY because your child has AS. Do NOT include costs you would spend on a "normal", healthy child of the same age.)
Diapers (leave blank if Angel is younger than 5 years old)	$	Transportation (medical/educational/therapeutic/childcare only)	$
Clothing (Replace clothes/linens destroyed by vomit/feces/urine/excretions/wound seepage only)	$	Medical (minus any insurance/subsidies/financial assistance)	$
Therapies (minus any insurance/subsidies/financial assistance)	$	Education (minus any insurance/subsidies/financial assistance)	$
Childproofing (doorlocks, cabinet locks, electrical outlet covers, gates,etc)	$	Approx average wages lost due to Angel-specific issues	$
Childcare (minus any insurance/subsidies/financial assistance)	$	Out-Of-Home Respite	$
Please answer these questions honestly and completely.
Has the Children's Aid/Child Protective Services ever been involved with your family against your will?	Yes No	If yes to the above, are they involved with your family now?	Yes No
Has your angel ever been removed from your custody against your will?	Yes No	Do you feel your marriage has suffered specifically because of Angelman Syndrome?	Yes No
Have you divorced/separate specifically because of Angelman Syndrome?	Yes No	If divorced, how old was your Angel when you divorced? (Age in months)
Has your relationship with the rest of your family (immediate/extended) suffered specifically because of Angelman Syndrome?	Yes No	Has your relationship with any of your friends suffered specifically because of Angelman Syndrome?	Yes No
Do you find a majority of members of the general public react negatively or with gross ignorance to/around your angel?	Yes No	Have you ever stopped using the services of, or stopped talking to professionals because of their reaction to your Angel? (Doctors, lawyers, clergy, nurses, educators)	Yes No
Do you receive a lot of "stupid" or ignorant advice about your angel? (Ex: "Maybe a bump to the head would cure him" or "If you weren't such a sinner, your child wouldn't be retarded")			Yes No
Thank you for completing this survey! If you would like to be notified if this survey changes, or when you will be able to see aggregate results online, please check the following box: (Please click this button only once! Multiple clicking will send multiple copies of the data and skew the results!)
(In the order in which suggestions were received) Kate Sweeney we need to ask ages at which milestones/developments occurred Robin Wilkerson we need to ask gender of Angels, types of seizures, use of augmentative communication devices and list, how many words can Angels speak, other health problems with Angels Jane, Becca's Mom we need to ask about different therapy types, medical and non-medical, access to parent/community support groups, M'Hamed Chabi we need to ask for both parents names, as well as an option for zero other siblings Susan we need to ask about non-immediate family involvement, where respite workers are recruited Cynthia Mathis we need to ask about medicines tried and then discontinued, non-pharmaceutical supplements, brand names of equipment/products Brenda Dixon we need to ask about divorce status, age of angel at divorce, puberty age, who angel lives with, relationship of person answering survey to the angel, gender of angel, age at which angel walked, toilet training questions, age/type of seizures, glasses, age at which angel was institutionalized/placed in group home, in school or not, age at which financial assistance began, respite: age at which is started, who provides, how is it funded, # siblings at home, long-term care plans Lulu we need to ask if there are more than one angel in the home, types of communication methods (including some great online resources), some typos, more detail about insurances, kinds/types/settings of group homes, Tami Short some more typos, need to make the survey answers updatable as your angel situation changes, need for clarification on data skewing, clarification on respite availability, age changes (months instead of years) Patti Baker the need for much better clarity in the vocabulary section Isabelle Wegnez more definition in vocabulary areas, height issues, autonomy issues Stacie Vetterli Much more detail on feeding issues (age of self-feeding, age for textured foods, breast feeding) Coral Thompson for the dosages section (medication) Melissa Kushner for common traits and characteristics section Kathy O'Loughlin for more on the dosages section (medication) Cathy Johnson Privacy issues, birth order of angel Andrew Phillips/Phillips Design for all the graphics, backgrounds and aesthetic advice to make this survey look so pretty!
This survey and all custom CGI scripting is © 2002 InternAlysis.com / A HREF="http://www.armyofangels.org/contact.html">Marc Bissonnette. All rights reserved. If you wish to duplicate this survey, in part or in whole, you must obtain permission from the copyright holder.