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Disability, Disorder and Disease Information |
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In
Loving Memory of Pasquale T. "Patty" Battaglini
(April 9, 1979 - August 17, 2004) |
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Featured Resources
National
Organization for Rare Disorders (NORD)
Dictionary: For Parents of Children with Disabilities (PDF)
includes terminology used within the fields of Testing/Evaluation,
Early Intervention, Special Education and Related Services, Medical
and Therapeutic Services, Family Supports and Resources, Vocational
Training, Independent Living, Guardianship, and Insurance. It was
compiled and developed by: "Building a Winning Team: The M.V.P. (Most
Valuable Parent) Project", Juli Schlaht, Parent Information
Specialist.
The National
Center on Birth Defects and Developmental Disabilities (NCBDDD)
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Click on a topic below to get
started:
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Articles Related to
Disabilities (also see
specific disabilities for additional
articles) |
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Evidenced Based Services and Anxiety - Evidence based services
or interventions (EBS) are those that have been scientifically
proven to have a positive effect in the treatment of a particular
disorder.
The Secret
Social Skills Ingredient - I love the story
about a man who approached legendary pianist Arthur Rubinstein on the street
in New York and asked, “Excuse me, how do I get to Carnegie Hall?”
Rubinstein reportedly looked at the man and said, “Practice, practice,
practice.” This anecdote may be apocryphal, but it’s still a great story.
We Can Do Better:
Supporting Crime Victims with Disabilities (PDF)
- All children and adults who are victimized by crime have
the right to receive services and supports to help them confront and
resolve the many complexities surrounding the trauma of crime. When
serving the significant population of victims of crime with
disabilities, however, the deeper issue to address is how can first
responders, victim/witness programs, domestic violence shelters, and
others better ensure that these victims are not overlooked or
otherwise forgotten?
A Good Reaction: Northwest Airlines
KidCares Medical Travel Program Helps a Little Boy With Severe Atopic
Dermatitis - Devin Weekley was born with
atopic dermatitis (eczema). About 15 million people in the United States
have eczema and it’s generally not a cause for concern. But Devin was
different. By age 2, it started getting bad. Everyone thought it was just
allergies. Then, during a span of two weeks, Devin’s eczema got so bad that
he couldn’t walk. Betsy Weekley, his mother, had to push Devin around in a
stroller at age 3.
Preparing the School for Your
Child with Special Needs -
Here's your head start for information to send to
teachers about your child's special needs. Follow the links
to find information regarding specific
disabilities, then download the "How to Assemble a
Teacher Information" Packet for step-by-step
instructions on using these tips and handouts.
What's Wrong With Your
Child? - My wife, Julie, and I were in church before the
service recently and a woman came up and told Julie how nice it was
that she'd brought our son Drew to their Sunday School class last
week. "You really can't tell that there's anything." She didn't finish
the sentence, probably realizing how something like "anything wrong
with him," would sound.
Special Needs for
School-Age Children: Planning Ahead When Your Child Has a
Disability - If your child has
a disability, or another family member with a disability relies
on you for care and support, you're likely to be concerned about
the future. You know that it's important to understand the best
way to arrange your financial and legal affairs to be sure your
child's care continues after your death. The following
information is meant to help you think about your child's
future. It will help you get ready to talk with any experts who
may help you plan your estate. It will also help you understand
how to let future caregivers know important information about
your child.
Free
Downloadable Letter of Intent Form – An 88 Item Checklist
Showing Parents How to Communicate their Wishes and Knowledge
about their Son or Daughter with a Disability to Future
Caregivers - How can you, as a parent, be assured that
your son or daughter will lead as complete a life as possible
after your death? What can you do to make sure your hopes and
aspirations are realized? Writing a letter of intent is a
critical step in the planning process. This critical document
permits parents to communicate vital information about their son
or daughter to future caregivers.
Some Words Hurt More Than
Others - What’s the hardest part about being
the parent of a child who is different? It’s the continuous struggle to teach
people to look past the differences and to recognize the child as a child first
and foremost. That’s not an easy task considering the attachment society has
with assigning labels to people and places.
Free Downloadable Children's Book:
Me and My Marrow (PDF; Size=2.8MB)
- Guides children and their families through the bone marrow donation
procedure and offering suggestions on how to cope with such issues as physical
changes, social interaction and family relationships.
Free Downloadable Children's Book:
Under My Skin (PDF; Size=3.4MB) -
Addresses the social and emotional impact often faced by those suffering from
atopic dermatitis, commonly known as eczema. Under My Skin offers easy to
understand explanations of how the disease occurs and
tips on coping with its symptoms.
Free Downloadable Children's Book:
The Inside Story (PDF; Size=2.5MB) -
This book guides children undergoing solid organ transplants and their
families through complicated medical procedures and hospital stays through
accessible images and friendly terms. Additionally, the book offers tips on
dealing with hospital stays and adjusting to life post-transplant.
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Miscellaneous Resources
(also see specific disabilities
for additional resources) |
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MI Euro-Peds North Oakland
Medical Centers - Children and young adults with cerebral palsy
and other neuromuscular disorders receive intense physical therapy at
the Euro-Pēds clinic, the world's first and only hospital-based
intensive therapy program, in order to achieve maximum improvement in
minimal time. Children with all levels of involvement are treated and
for thousands of children, it offers treatment options never before
explored such as SUIT Therapy and the Universal Exercise Unit (UEU).
Many patients learn to do things they never did before in their lives
- roll, sit, crawl and even walk. To learn more, visit
http://www.europeds.org/epp_epd.htm.
Health
Journals for Parents of Kids with Special Needs - "When my
daughter was diagnosed, I created a health journal to help organize
all of her medical information. Soon, the clinic asked me to make 40
more for the other parents." The Little Acorn now offers many versions
of this book which have been customized to fit specific disabilities.
Visit the website for more details or to order. Available items (New
products added often - see website for current offerings): "Juggling
Autism" Starter Kit, "Juggling Cystic Fibrosis” Starter Kit, "Juggling
Down Syndrome” Starter Kit, "Juggling Cerebral Palsy" Starter Kit,
"Juggling Asthma" Starter Kit, "Juggling Diabetes" Starter Kit,
"Healthy Kids” Starter Kit, "A Woman's Health Journal", and "The
Courage Book”
Brave Kids Resource Page has a vast listing of resources grouped
by category such as clothing, medical, transportation, etc.
Kiwanis Champions for Children: Kiwanis Champions have
the resources of Kiwanis International at their disposal. You may
reach us at: Kiwanis Champions for Children, 3636 Woodview Trace,
Indianapolis, Indiana 46268-2647. Phone: 317-875-8755, extension 128
or email champions@kiwanis.org.
Feingold Program
- Numerous studies show that certain synthetic food
additives can have serious learning, behavior, and/or health effects for
sensitive people. The Feingold Program itself is a
test to determine if certain foods or food additives are triggering particular
symptoms. It is basically the way people used to eat before "hyperactivity"
became a household word, and before asthma and chronic ear infections became so
very common. Used originally as a diet for allergies, improvement in behavior
and attention was first noticed as a "side effect." It is a reasonable first
step to take before (or with) drugs for any of the symptoms listed on the home
page.
See-Sign Productions presents a series of
video tapes designed to teach sign language to developmentally disabled
children, adolescents and adults. The screen is divided in half; one side is
a picture of the object/action/word and the other side is a person demonstrating
the selected sign. Each sign is presented twice, allowing time in between
for actual practicing the sign. A test section follows each category to
confirm mastery of the vocabulary items presented. Videos are $69 each and
can be ordered by calling 425-828-0580.
Medical & Developmental History
Form (PDF; size=6k) - Simply print
and fill out this form so that when you arrive at a doctor's office
you won't leave anything important out. Includes places to write
in important information on medications, allergies, developmental
history, etc. (form found on the website
www.mentalhealthrecovery.com).
http://www.ncd.gov/
National
Council on Disability
http://www.ncwd-youth.info/resources_&_Publications/phpHoo3.php
NCWD for
Youth
All Kinds of Minds -
All Kinds of minds provides programs,
tools, and a common language for parents, educators, and clinicians to
help students with differences in learning achieve success in the
classroom and in life. Our primary goals it to educate teachers,
parents, educational specialists, psychologists, pediatricians, and
kids about differences in learning, so that students who are
struggling in school because of the way their brains are “wired” are
no longer misunderstood.
Click here for
information on Social Skills Builders Classes
- Social Skills Builders offers a series of peer group programs
for early childhood through adolescent aged children, who demonstrate
difficulties with social skill awareness, social interactions and
social behaviors.
Project Participate
provides families, educators, administrators and therapists with
simple strategies to increase the active participation of students
with disabilities in school programs.
Explore their site to see success stories and learn practical
solutions to enhance learning, teaching, and the full inclusion of
students with disabilities in the classroom. Download sample
curricular adaptations, handouts for training, intervention planning
forms and more!
Intolerance
Testing - This test is for intolerance
from the Great Plains Laboratory, which is different than
allergy. Most insurances does not currently
cover this test. This test is said to prove the
connection between food intolerance and certain behavioral problems or
issues. A score of under 20
is considered normal.
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*Disability-specific,
Disease-specific, and Disorder-specific
Information |
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Click on a
disability below for more information.
*Includes topics that aren't
necessarily considered a disability i.e. Substance Abuse
Would you like to suggest a
disability topic? If so,
email us! |
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Attention Deficit Hyperactivity Disorder (ADD/ADHD) |
Early Childhood
Disorders |
NEW!
Osler-Weber-Rendu
Syndrome also known as Hereditary Hemorrhagic Telangiectasia (HHT) |
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Angelman Syndrome |
NEW!
Emotional
Impairment, Disorder or Disability
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Pain Management |
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Anorexia
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Environmental Toxins and Poisoning
(Includes Mercury) |
Pediatric & Adolescent
Hypertension |
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Apraxia |
Epilepsy |
Pervasive
Developmental Disorder (PDD) |
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Asperger Syndrome
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Erb's Palsy |
Pervasive
Developmental Disorder Not Otherwise Specified (PDD NOS) |
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Asthma
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Food Allergies
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Physical Impairment |
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NEW!
Ataxia-Telangeictasia |
Fetal Alcohol Spectrum Disorders (FASD) |
Porencephaly |
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Auditory Processing Disorder |
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Autism |
Fibromyalgia |
Post-Traumatic
Stress Syndrome (or Post-Traumatic Stress Disorder) |
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Bipolar |
Fragile
X Syndrome
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Prader-Willi
Syndrome |
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NEW!
Body Dysmorphic
Disorder |
Gerstmann's Syndrome |
Rett Syndrome |
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Cancer
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Hearing
Impaired, Deafness, or Hearing Loss
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Schizophrenia |
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Celiac Disease |
Hemiplegia
and Stroke (Children's) |
Seasonal
Affective Disorder (SAD) |
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Central
Auditory Processing Disorder (CAPD) |
Hydrocephalus |
Self-Injury
and Self-Injurious Behavior |
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Cerebral
Palsy
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NEW!
IsoDicentric 15 |
Semantic
Pragmatic Disorder (SPD) |
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Cognitive Impairment
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Immune Deficiency &
Immune System Dysfunction
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Sensory
Integration Dysfunction |
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Conduct
Disorder |
Juvenile Rheumatoid
Arthritis
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Sickle Cell Anemia |
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Cornelia
de Lange Syndrome |
Latex Allergy |
Sleep Apnea |
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Cranio-Facial Abnormalities |
Lead Poisoning |
Speech &
Language Impairments including Apraxia and Dyspraxia also see
Apraxia
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Cutting |
Learning Disabilities
(LD) |
Smith-Magenis Syndrome (SMS) |
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Deaf-Blind |
Lyme Disease |
Social Anxiety Disorder |
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Depression
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Mental Illness |
Spina Bifida |
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Developmental
Delay |
Mental Impairment |
Stuttering
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Diabetes |
Mental Retardation |
Substance
Abuse |
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DiGeorge Syndrome
or Velo-Cardio-Facial Syndrome (VCFS) |
Migraine Headache |
Tourette
Syndrome
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Down
Syndrome |
Multiple Sclerosis
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Transverse
Myelitis |
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Dubowitz
Syndrome |
Mutism &
Selective Mutism |
Traumatic
Brain Injury
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Dyslexia |
Nonverbal
Learning Disorder
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Visual
Impairments
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Dyspraxia |
Obesity |
Von Willebrand’s Disease |
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Obsessive Compulsive
Disorder (OCD)
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Williams
Syndrome |
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Oppositional
Defiant Disorder (ODD) |
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Student With A Disability Defined - Michigan
(Rules Effective 6-6-02)
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"Student with a disability" means a person who is
determined by an individualized education
program team or a hearing officer to have 1
or more of the impairments specified in this
part that necessitates special education or
related services, or both, who is not more than 25
years of age as of September 1 of the
school year of enrollment, who has not completed a
normal course of study, and who has not graduated
from high school. A student who reaches
the age of 26 years after September 1 is a "student with a
disability" and entitled to continue a
special education program or service until the end of that
school year.
Administrative Rules
for Special Education [Revised 6/02] - You can now download the rules
in text format. Looking
for a specific word, phrase or rule? See Tips on
Searching a Text File. A copy of the rules can be ordered by
calling 1-800-593-9146, ext 4 for $1.60 or for free in pdf format -
click here.
Also see:
Administrative Rules for Special Education [Revised 9/04] - You can now
download the rules at
http://www.michigan.gov/documents/RevRules_Sept04_101744_7.pdf.
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Immunization Information |
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This section has
expanded and moved - click here. |
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Services For Hospitalized or Terminally Ill Children |
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This section has
expanded and moved - click here. |
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