A 501(C)(3) nonprofit organization dedicated to serving the needs of
grieving children and families and to provide education and support to those who
serve them.
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.
Gelart XTRA - A
seating and standing system developed for children with movement
disorders like cerebral palsy or spina bifida.
Google Plans New Service for Scientists and Scholars-
Google is adding a new search service aimed at scientists and
academic researchers. Google Scholar, at
http://scholar.google.com,is a result of the company's collaboration with a number of scientific
and academic publishers and is intended as a first stop for researchers looking
for scholarly literature like peer-reviewed papers, books, abstracts and
technical reports. [Login/registration required.]
The Alcott Center for Cognitive
Enhancement, LLC provides research-based intervention methods
including Lindamood-Bell learning processes, PACE/Master the Code,
and auditory intervention. Areas of focus include: Learning
disabilities, (C)APD, Dyslexia, AD/HD, Sensory Integration
Dysfunction, Autism Spectrum Disorder, Speech and Language problems
and other developmental delays and disorders. We provide a FREE
program screening and a complimentary consultation to review test
results and treatment recommendations. Programs are custom-designed
to meet the individual needs of each child.
PubMed:
Easy Access to Medline's 15 Million Journal Citations - PubMed, a service of the National
Library of Medicine, includes over 15 million citations for biomedical
articles back to the 1950's. These citations are from MEDLINE and additional
life science journals.
E-ssential
Guides: Topic-specific PDF Booklets
- Each guide focuses on a specific topic and includes articles and
expert interviews, along with suggested
resources. Download a guide, print, and go!
Find articles on the
latest research from the National Institutes of Child Health and
Development -
click here.
The Care
Notebook - The Care Notebook is a tool for
families who have children with special health care needs. Families use Care
Notebooks to keep track of important information about their child's health and
care. This makes it easier to find and share key information with their child's
care team.
Wrong Diagnosis -
This web site focuses on misdiagnosis of more than 2,000
diseases and 700 symptoms. Also check out their
list of
symptoms.
Tomorrow's Child -
Tomorrow's Child is your resource for grief support, risk reduction,
and community education, leading the effort to provide information and
assistance to families and the medical community. The leading causes
of infant death in Michigan are: problems related to prematurity and
low birth weight, congenital anomalies, accidents, heart disease, and
pneumonia. For babies who survive the first month of life, SIDS
continues to be the leading cause of death.
Articles Related to
Disabilities (also see
specific disabilities for additional
articles)
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.
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 andfamily 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 thedisease 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.
Click here
to download the new guide from The Association
for Children's Mental Health (ACMH) "A Parent’s Guide to Obtaining Mental
Health Services for Children in Michigan" (PDF).
Body Dysmorphic Disorder
- To your dismay, your daughter has started to complain more and
more about the appearance of her eyelids. She grudgingly compares them to
those of her classmates. You frequently catch her standing before a mirror,
scrutinizing their appearance. When you try to discuss your concerns, she
becomes defensive. To make matters worse, you've observed her reading
materials about cosmetic surgery.
Liberate the
Neurotypicals! - Poor
neurotypicals. Sometimes they just don't have a clue. What's a
neurotypical? It's a label for someone who doesn't have Asperger
Syndrome or "AS." (I don't know who coined the term, but I first
heard it used by Dr. Peter Gerhardt.) We can call neurotypicals
"NT's" for short. When an NT first encounters someone with
Asperger Syndrome, he or she often sees quirky AS behaviors as a
warning. "Oops, something wrong with this one. Better stay
clear."
Do you know a child with
cerebral palsy, spina bifida, or poor motor coordination? Would
you like to give this deserving youngster an opportunity to ride
his own tricycle just like other neighbor children? Would you
like to see him become stronger while strengthening his limbs?
For years, the AmTryke® therapeutic tricycle has benefited
and delighted children with disabilities. It has allowed them to
experience the pleasure of riding freely even among peers
without disabilities. Physical therapists acknowledge the
AmTryke® tricycle's therapeutic benefits to patients, citing
improved motor skills and strength development. In fact, the
AmTryke® tricycle was inspired by a therapist. National AMBUCS™,
Inc. has a "wish list" of children in need of an AmTryke®
therapeutic tricycle. If your chapter is interested in
sponsoring a child, please
contact AMBUCS. Also, see the
AMBUCS™ Confidential Information Guidlines
(PDF).
[Spinal Cord Injuries]
Cortney's Wish: A Homecoming to Celebrate- Surgery gives new hope to paralyzed teen. Every time Cortney Hoffman
feels a sensation running from her hips down through her legs to her toes,
it is a signal to her that there's a new spark in her injured spinal cord.
[Physical Impairments] Scientists Reverse
Paralysis in Dogs - Dogs with
paralyzed hind legs regained the ability to walk after getting
a shot of a chemical cousin of antifreeze that helped repair
nerve cells in their damaged spinal cords, scientists
reported. Purdue University researchers who led the project
hope the approach can soon be tried in people, but caution
that there are significant differences between human and
canine spinal cords.
The Disability
Movement Turns to Brains - No
sooner was Peter Alan Harper, 53, given the diagnosis of
attention deficit disorder last year than some of his family
members began rolling their eyes. To him, the diagnosis
explained the sense of disorganization that caused him to lose
track of projects and kept him from completing even minor
personal chores like reading his mail. But to others, said Mr.
Harper, a retired journalist in Manhattan, it seems like one
more excuse for his inability to "take care of business."
Why Don't We Call Them Quirky? - As more and more kids live with labels, diagnoses and
disorders, a growing number of experts are beginning to use
antiquated terms like 'eccentric' and 'odd'.
OH
Disabled Pupils Learn to Focus in Sensory Room
- The bright colors, dazzling lights and textured gizmos in
the new "sensory"
room at a school for students with developmental disabilities actually
have a calming effect. [Free registration/login required to view this
article.]
Using fMRI Technology to Understand Hyperlexia -
Georgetown University Medical Center researchers today published
the first ever fMRI study of hyperlexia, a rare condition in
which children with some degree of autism display extremely
precocious reading skills. Appearing in Neuron, the case study
uncovers the neural mechanisms that underlie hyperlexia, and
suggest that hyperlexia is the true opposite of the reading
disability dyslexia. Hyperlexia is found in very rare cases in
children who are on the "autism spectrum," meaning they display
some characteristics of autism. Like autistic children, children
with hyperlexia have extreme difficulty with oral communication,
social interaction and expression, and yet can read surprisingly
well at a very young age.
UK
Motor Skills
Masterclass - Your son is bright, inquisitive,
articulate. But, as his school career progresses, his teachers
begin to notice that he struggles in certain things.
Reflections on Friendship - What steps can we take to invite and support
real friendships for our sons and daughters who live with disabilities? We
sometimes see other children moving along in a sea of friendship, and we see our
children struggling with isolation. The natural ebb and flow of play, enjoyment
and affection may seem out of reach, and we worry about the possibility of a
life-long pattern of separateness. What can we do?
How to Know when Your Child
Needs Residential Treatment - Many of us are coping with kids
who exhibit challenging behaviors. Despite the headaches of parenting,
we as parents want to do everything that we possibly can to help our
child. One of the most difficult and heartbreaking decisions a family
can make is to decide that residential treatment is needed for their
child.
Jewels That May Help
Explain Behavioral Disorders Found Among 'Junk' DNA -
Scientists have been looking for genes that can explain
behavioral disorders for 20 years without much success.
According to L. Alison McInnes of Mt. Sinai School of Medicine,
that may be because they have been concentrating their efforts
in the wrong places in the genome.
Liquid
Candy or Healthy Kids? - Children and
teens have little defense against the lure of soft drink advertising.
Despite published health risks of soda consumption, soft drink moguls
like the Pepsi-Cola Group continue to grow and prosper. During recent
years, soda companies have gained access to children attending public
schools by entering into exclusive contract agreements with local
school districts.
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.
The
Time
Out for Families Group is a support connection for professionals and
families offering an online forum for parents,as well
as an e-newsletter for families AND professionals,
along with parent to parent support for families who have a child with
special needs such as ADHD, Bipolar Disorder, Asperger
Syndrome, Depression and more.
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.
Parent Sharing:http://www.icarenow.org - "A new
organization is being formed to provide support and advocacy for people with
brain injuries who are receiving alternative therapies. One of the aims of the
organization is to promote the legitimacy of alternative therapies and pursue
Medicaid funding of them."
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).
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.
Student With A Disability Defined - Michigan
(Rules Effective 6-6-02)
"Student with a disability" means a person who is
determined by an individualizededucation
program teamor a hearing officer to have 1
or more of the impairments specified inthis
part that necessitates specialeducation or
related services, or both, who is not more than 25years of age as of September 1 of the
school year of enrollment, who has not completed anormal course of study, and who has not graduatedfrom high school. A student who reachesthe age of 26 years after September 1 is a "student with adisability" and entitled to continue aspecial 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.
