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My Child May Have a Disability.  What Should I Know?

The following resources and links provide information and resources that may assist you in understanding your child's disability as well as information on some of the services and accommodations that he/she may qualify to receive.   

A Back-to-School Basic: Your Parent Training & Info Center   "In reality, you are the expert on your child. As such, you should strive to become your child’s best advocate by identifying trusted resources and information, and developing the necessary knowledge and skills. If that sounds intimidating, think of it this way: You don’t need to know all the answers; you just need to ask the right questions!"  Parent information and resources to assist you in advocating for your child. 

Closed Head Injury: Our mission is to be the most reliable, timely and complete resource on the internet for Closed Head Injury and other debilitating diseases. These injuries can be devastating, causing physical and emotional distress. 

Council of Administrators of Special Education  "CASE is an international professional educational organization which is affiliated with the Council for Exceptional Children whose members are dedicated to the enhancement of the worth, dignity, potential, and uniqueness of each individual in society.  Those who receive special education services are individuals who possess basic rights and responsibilities, and who command respect at all times. Special education embraces the right to a free appropriate public education."

Council for Exceptional Children  "The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice."

Department of Education. Building the Legacy: IDEA 2004 --     THE LAW
"The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.  Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B."    (The Department of Education has compiled all IDEA 2004 resources at this site.)

Disability Etiquette:    "Tips on Interacting with People with Disabilities."   (Specific guidelines by category of disability.)  Developed by the United Spinal Association. , the federal government’s one-stop access website for disability-related resources, services, and information, has a plethora of guides that breaks down topics that matter those with disabilities, caregivers and families, and helping professionals who interact with this particular population. 

The First Concern to Action Toolkit has been developed by Autism Speaks t to assist families who are concerned about how their child is communicating, interacting or behaving, and  wondering what to do next. The First Concern to Action Tool Kit can help parents sort that out. The purpose of this tool kit is to provide parents with specific resources and tools to help guide them on the journey from their first concern to action including an overview of early child development and guidance on what to do when there is a concern.   The kit is also available in Spanish.    

How Safe Is The Schoolhouse?   Seclusion and restraint are highly dangerous interventions that have led to death, injury, and trauma in children. They stand in sharp contrast to positive behavioral support programs and de-escalation techniques that resolve most challenging situations.   The updated version of How Safe Is The Schoolhouse? An Analysis of State Seclusion and Restraint Laws and Policies, written by Jessica Butler, has been published by the Autism National Committee. The January 20, 2014 report contains updated information on state restraint and seclusion statutes, regulations, and policies.   The report examines how the majority of states still operate under weak laws and laws with loopholes. A family can move across a river or down a highway and lose the protections it used to have.   Read more.  Source:  Autism National Committee

LD Online.    "LD OnLine is the world's leading website on learning disabilities and ADHD, serving more than 200,000 parents, teachers, and other professionals each month.  LD OnLine seeks to help children and adults reach their full potential by providing accurate and up-to-date information and advice about learning disabilities and ADHD. The site features hundreds of helpful articles, multimedia, monthly columns by noted experts, first person essays, children’s writing and artwork, a comprehensive resource guide, very active forums, and a Yellow Pages referral directory of professionals, schools, and products."

The Learning Disabilities Association of America  "Parents are often baffled by the problems presented by a child with learning disabilities. Often this “invisible disability” does not become obvious until a child reaches school age. Even then, difficulties may be subtle. Here you will find a wealth of information on understanding learning disabilities, negotiating the special education process and helping your child and yourself."

The Learning Toolbox    "This website is for parents of Middle School and High School level students with learning disabilities and ADHD.  It assists parents in helping their children become more effective learners by supporting the Learning Toolbox instruction their children are receiving in school and facilitating generalization of strategies learned in school to assignments done at home. "

National Center for Learning Disabilities.  "The National Center for Learning Disabilities (NCLD) is committed to ensuring that all students with learning disabilities graduate from high school with a standard diploma—prepared for college and the workplace.  This site provides lots of resources for parents of children with disabilities."  

My Child is Struggling with Learning.   Resources provided by the National Center for Learning Disabilities

NICHCY.    National Dissemination Center for Children with Disabilities "is very pleased to offer you a wealth of information on disabilities!  We serve the nation as a central source of information on disabilities in infants, toddlers, children, and youth. Here, you’ll also find easy-to-read information on IDEA, the law authorizing early intervention services and special education. Our State Resource Sheets will help you connect with the disability agencies and organizations in your state.Read and freely share our many articles and publications, sign up for our newsletter, and write or call us for more personalized assistance. We are here to help".

National Research Center on Learning Disabilities Symposium.    "Change—even change for the better—comes with some discomforts and questions.  Our materials can help you get the answers you need about your child's education. We define confusing terms and explain new education models, such as responsiveness to intervention and its relationship to the methods schools use to determine whether a student has a learning disability.  We suggest questions you can ask the teachers and administrators at your child's school and identify information you can expect to receive from the school.  In short, we developed these materials to help you be involved in efforts to improve education at your son's or daughter's school. The materials listed are tailored specifically to parents. If you want to know more, our site offers many more resources for you to explore."

Office of Civil Rights (OCR)  The OCR is responsible for protecting the rights of students with disabilities.   If you have concerns about the services your child is receiving or not receiving, this site may provide some assistance.    Frequently Asked Questions About Section 504 and Individuals with Disabilities Education Act

Office of Special Education and Rehabilitative Services   "The Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages. OSERS provides a wide array of supports to parents and individuals, school districts and states in three main areas: special education, vocational rehabilitation and research.   OSERS also provides funds to programs that offer information and technical assistance to parents of infants, toddlers and children with disabilities, as well as members of the learning community who serve these individuals."

Pacer Center:  "Champions for Children with Disabilities   The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.  Founded in 1977, PACER Center was created by parents of children and youth with disabilities to help other parents and families facing similar challenges. Today, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. "

Parents Guide to Response to Intervention (RtI)  The parents of millions of children who struggle to learn are searching 24/7 to help their children move forward in school. This guide to Response to Intervention is an easy-to-understand and critical tool for these parents.  As schools work to implement this new approach, some confusion may arise, so parents should feel free to ask questions and raise concerns along the way. For specific information on parents' rights under RTI, download our Parent Rights in the Era of RTI PDF.

Person First Language"Communicating With and About People with Disabilities"   Source:  National Center on Birth Defects and Developmental Disabilities: Center for Disease Control

Section 504 and IDEA: Basic similarities and differences   Information provided by LD Online to assist parents in understanding Section 504 and the Individuals with Disabilities Act

Wrightslaw Individuals with Disabilities Education Act of 2004   "IDEA 2004 at Wrightslaw includes information about IDEA topics such as child find, eligibility, evaluations, reevaluations, high stakes testing, IEPs, IEP teams, IEP meetings. accommodations, alternate assessments, placements, transition, parental rights, and more."  

My Child Has Just Been Diagnosed with Autism  

The American Academy of Pediatrics (AAP)  provides other autism-related information for pediatricians and families including Behavioral Principles Fact Sheet,  and Nutrition and Eating Problems.

Autism changes in the DSM V: A step toward clarifying a confusing diagnosis   Many families are concerned that their child will no longer qualify for a diagnosis and, by extension, for services they depend on to care for their children.    Because autism is a "spectrum disorder," meaning that the severity of symptoms ranges from mild to debilitating, The DSM IV had a number of diagnoses used to categorize varying degrees of autism. These include Asperger's, generally a milder form of the illness; Pervasive Developmental Disorder Not Otherwise Specified, often referred to as PDD-NOS, a term that is especially confusing for parents; and less formal designations such as "high functioning autism."   According to Dr. Melissa Nishawala, the new system "does away with these labels that have not proved useful" and have left "the door open too far for misdiagnosis" .   There will be one diagnosis of "autism spectrum disorder."  Read more.    Source:  Article by Dr. Melissa Nishawala.   The Child Study Center at NYU Langone Medical Center. 

The Autism Society   The nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. 

Autism Science Foundation also offers information and resources on their website as well as their   Pinterest site.    Check it out.

Autism Speaks provides information and resources  including packed tool kits for FREE download, including the 100 Day Kit for families who have a child recently diagnosed with autism.  For still more information and resources please see Frequently Asked Questions  (FAQs Espanol)  as well as special sections on Diagnosis, Symptoms, Learn the Signs, Treatment, Your Child’s Rights, Asperger Syndrome and PDD-NOS.

Autism Spectrum Disorders: Intervention Options for Parents and Educators  A diagnosis of autism or autism spectrum disorders (ASD) presents significant challenges to parents.  When they first learn that their child has autism, their first questions usually are: What do we do next?  Where can we get help? How do we make choices about intervention? Parents may be overwhelmed by the intervention options available, as well as frustrated by difficulties accessing specialized services.  Learning about a child’s diagnosis sets parents and caregivers in a direction they did not expect to take  This handout provides parents and educators with an overview of the options for supporting children with ASD and information to enhance collaboration between home and school.   When parents and educators work together, children with ASD are assured the best possible outcomes.   Source:   Article by  Lisa A. Ruble & Natacha Akshoomoff.   National Association of School Psychologists  

My Child Has Just Been Diagnosed with Autism.

Sound Advice on Autism for parents who have received a diagnosis of Autism for their child.   The American Academy of Pediatrics offers a collection of interviews with pediatricians, researchers and parents about such topics as diagnosis, treatment, common therapies, and advice for families on autism (and other health related topics) including an interview with Dr. James M. Perrin, president-elect of the American Academy of Pediatrics.  Dr. Perrin answers such questions as addressing the changes to the DSM-V, as well as causes and treatment of autism.   He is a professor of pediatrics at Harvard Medical School and heads the division of General Pediatrics at the MassGeneral Hospital for Children. Dr. Perrin leads the Clinical Coordinating Center for the National Autism Speaks Autism Treatment Network to improve care for children with autism and other developmental disorders.    The interview is an audio recording.   An edited transcript is also available.    Source:  The American Academy of Pediatrics. 



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