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Disability, Disorder and Disease Information

In Loving Memory of Pasquale T. "Patty" Battaglini
April 9, 1979 - August 17, 2004

 

Featured Resources

 

Featured Website: The Children's Grief Education Association

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.

 

Can’t find what you're looking for? Try our search resources including medical encyclopedias, search engines, and much more.

 

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) - Check out their health topics A- Z or search their downloadable publications database.

 

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.]

 

Click on a topic below to get started:

 Articles Related to Disabilities  (also see specific disabilities for additional articles)

 

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.

 

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.

 

How schools teach reading is again a subject of much public attention - As you know, the discussion is particularly focused on whether reading instruction is based on research, and if so, what kind.

 

ASA Publishes Classroom Acoustics Standard
 
 

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.

 

Read the article "Parents Taking Charge in the Medical Arena" by Calvin and Tricia Luker

 

Medicare intends to cover use of Neuromuscular Electrical Stimulation - to Help People with Spinal Cord Injury Walk

  

Common Bread Preservative Found to Affect Children's Behavior

 

UK Children's speaking skills in decline

 

Educating Students with Emotional/Behavioral Disorders - click here.

  

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 Miscellaneous Resources (also see specific disabilities for additional resources)

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).
 

http://www.ncd.gov/  National Council on Disability

 

http://www.ncwd-youth.info/resources_&_Publications/phpHoo3.php NCWD for Youth

 
http://www.disabilityinfo.gov/
Presidents New Freedom Online Resource for American's with Disabilities

 

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

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!

Attention Deficit Hyperactivity Disorder (ADD/ADHD) Early Childhood Disorders NEW! Osler-Weber-Rendu Syndrome also known as Hereditary Hemorrhagic Telangiectasia (HHT)

Angelman Syndrome

NEW! Emotional Impairment, Disorder or Disability

Pain Management

Anorexia

Environmental Toxins and Poisoning (Includes Mercury) Pediatric & Adolescent Hypertension
Apraxia Epilepsy Pervasive Developmental Disorder (PDD)

Asperger Syndrome

Erb's Palsy Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS)

Asthma

Food Allergies

Physical Impairment
NEW! Ataxia-Telangeictasia Fetal Alcohol Spectrum Disorders (FASD) Porencephaly
Auditory Processing Disorder
Autism Fibromyalgia Post-Traumatic Stress Syndrome (or Post-Traumatic Stress Disorder)
Bipolar

Fragile X Syndrome

Prader-Willi Syndrome
NEW! Body Dysmorphic Disorder Gerstmann's Syndrome Rett Syndrome

Cancer

Hearing Impaired, Deafness, or Hearing Loss

Schizophrenia
Celiac Disease  Hemiplegia and Stroke (Children's) Seasonal Affective Disorder (SAD)
Central Auditory Processing Disorder (CAPD) Hydrocephalus Self-Injury and Self-Injurious Behavior

Cerebral Palsy

NEW! IsoDicentric 15 Semantic Pragmatic Disorder (SPD)
Chronic Fatigue Syndrome

Immune Deficiency & Immune System Dysfunction

Sensory Integration Dysfunction

Cognitive Impairment

Juvenile Rheumatoid Arthritis

Sickle Cell Anemia
Conduct Disorder Latex Allergy Sleep Apnea
Cornelia de Lange Syndrome Lead Poisoning

Speech & Language Impairments including Apraxia and Dyspraxia also see Apraxia

Cranio-Facial Abnormalities Learning Disabilities (LD) Smith-Magenis Syndrome (SMS)
Cutting Lyme Disease Social Anxiety Disorder
Deaf-Blind

Mental Illness

Spina Bifida

Depression

Mental Impairment

Stuttering

Developmental Delay Mental Retardation Substance Abuse
Diabetes Migraine Headache

Tourette Syndrome

DiGeorge Syndrome or Velo-Cardio-Facial Syndrome (VCFS)

Multiple Sclerosis

Transverse Myelitis
Down Syndrome Mutism & Selective Mutism

Traumatic Brain Injury

Dubowitz Syndrome

Nonverbal Learning Disorder

Visual Impairments

Dyslexia Obesity Von Willebrand’s Disease
Dyspraxia

Obsessive Compulsive Disorder (OCD)

Williams Syndrome
  Oppositional Defiant Disorder (ODD)  
     

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Student With A Disability Defined - Michigan (Rules Effective 6-6-02)

"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

This section has expanded and moved - click here.

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Services For Hospitalized or Terminally Ill Children

This section has expanded and moved - click here.

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