Resources
We know how frustrating it is not to know where to go for help, or get information, or find support and services that are available. Below are some - certainly not all - links, information and contacts that may be able to direct you to the right places. Should you come across other items that you think would be beneficial to others, feel free to send them to Sally Nantais.
Be sure to check back often as we add more and more to this page.
FXAM does not endorse any products, treatments or therapies and encourages you to contact your doctor, health-care provider or therapist before making any medical decisions. Full Disclaimer
National
National Fragile X Foundation
FRAXA Research Foundation
CDC - What should you know about Fragile X Syndrome (FXS)?
Fragile X Specific
The Top Ten Things You Should Know About Fragile X Syndrome
Advances in the treatment of Fragile X Syndrome - The FMR1 mutations can cause a variety of disabilities, including cognitive deficits, attention-deficit/hyperactivity disorder, autism, and other socioemotional problems, in individuals with the full mutation form (fragile X syndrome) and distinct difficulties, including primary ovarian insufficiency, neuropathy and the fragile X-associated tremor/ataxia syndrome, in some older premutation carriers. Therefore, multigenerational family involvement is commonly encountered when a proband is identified with a FMR1 mutation. Studies of metabotropic glutamate receptor 5 pathway antagonists in animal models of fragile X syndrome have demonstrated benefits in reducing seizures, improving behavior, and enhancing cognition. Trials of metabotropic glutamate receptor 5 antagonists are beginning with individuals with fragile X syndrome. Targeted treatments, medical and behavioral interventions, genetic counseling, and family supports are reviewed here.
Autism Spectrum Disorder in Fragile X Syndrome: Cooccurring Conditions and Current Treatment - Full article available at link. Abstract: BACKGROUND AND OBJECTIVE: Individuals with fragile X syndrome (FXS) are frequently codiagnosed with autism spectrum disorder (ASD). Most of our current knowledge about ASD in FXS comes from family surveys and small studies. The objective of this study was to examine the impact of the ASD diagnosis in a large clinic-based FXS population to better inform the care of people with FXS.
METHODS: The study employed a data set populated by data from individuals with FXS seen at specialty clinics across the country. The data were collected by clinicians at the patient visit and by parent report for nonclinical and behavioral outcomes from September 7, 2012 through August 31, 2014. Data analyses were performed by using χ2 tests for association, t tests, and multiple logistic regression to examine the association between clinical and other factors with ASD status.
RESULTS: Half of the males and nearly 20% of females met Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria for current ASD. Relative to the FXS-only group, the FXS with ASD (FXS+ASD) group had a higher prevalence of seizures (20.7% vs 7.6%, P < .001), persistence of sleep problems later in childhood, increased behavior problems, especially aggressive/disruptive behavior, and higher use of α-agonists and antipsychotics. Behavioral services, including applied behavior analysis, appeared to be underused in children with FXS+ASD (only 26% and 16% in prekindergarten and school-age periods, respectively) relative to other populations with idiopathic ASD.
CONCLUSIONS: These findings confirm among individuals with FXS an association of an ASD diagnosis with important cooccurring conditions and identify gaps between expected and observed treatments among individuals with FXS+ASD.
The Developmental & Fragile X Resource Centre
Dr. Mike's Psychiatry Blog
Fragile X Premutation Disorders - Expanding the Pyschiatric Perspective - Fragile X-associated psychiatric manifestations serve as a useful model for a molecular genesis of neuropsychiatric illness. Because of the multigenerational expression of fragile X-associated neuropsychiatric illness, there is a prominent role for genetic testing and genetic counseling of patients and their relatives. Genetic testing is confirmatory of the FMR1 premutation and is an essential component of the clinical evaluation. Psychopharmacological and psychotherapeutic treatment of fragile X-associated psychiatric illnesses may improve patient function and assist in adaptation to the burden of a genetic neuropsychiatric illness.
Fragile X spectrum disorders - The fragile X mental retardation 1 gene (FMR1), which codes for the fragile X mental retardation 1 protein (FMRP), is located at Xp27.3. The normal allele of the FMR1 gene typically has 5 to 40 CGG repeats in the 5′ untranslated region; abnormal alleles of dynamic mutations include the full mutation (> 200 CGG repeats), premutation (55–200 CGG repeats) and the gray zone mutation (45–54 CGG repeats). Premutation carriers are common in the general population with approximately 1 in 130–250 females and 1 in 250–810 males, whereas the full mutation and Fragile X syndrome (FXS) occur in approximately 1 in 4000 to 1 in 7000. FMR1 mutations account for a variety of phenotypes including the most common monogenetic cause of inherited intellectual disability (ID) and autism (FXS), the most common genetic form of ovarian failure, the fragile X-associated primary ovarian insufficiency (FXPOI, premutation); and fragile X-associated tremor/ataxia syndrome (FXTAS, premutation). The premutation can also cause developmental problems including ASD and ADHD especially in boys and psychopathology including anxiety and depression in children and adults. Some premutation carriers can have a deficit of FMRP and some unmethylated full mutation individuals can have elevated FMR1 mRNA that is considered a premutation problem. Therefore the term “Fragile X Spectrum Disorder” (FXSD) should be used to include the wide range of overlapping phenotypes observed in affected individuals with FMR1 mutations. In this review we focus on the phenotypes and genotypes of children with FXSD.
GeneReviews - FMR1 Related Disorders - a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.
Marcia Braden Ph.D., P.C. - Internationally known psychologist in the Fragile X world specializing in behavioral and educational issues.
Your Genes Your Health - Fragile X Page
Research
ClinicalTrials.gov - search for "fragile X"
Fragile X Research Registry
Our Fragile X World
State & Local
Friendship Circle: Located in West Bloomfield and offers an interactive environment for children with special needs to learn basic life skills in a fun and supportive environment.
Michigan Alliance for Families - Michigan Alliance for Families is a statewide resource to connect families of children with disabilities to resources to help improve their children’s education. We help facilitate parent involvement as a means of improving educational services and outcomes for students with disabilities. Michigan Alliance can assist you in knowing your rights, effectively communicating your child’s needs, and advising how to help them develop and learn.
Michigan Family to Family: Michigan Family to Family Health Information Center (MI F2F) is part of a federal initiative which funds F2Fs in every state, providing information and education on disability and health-related issues to families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. We provide families with the tools to make informed decisions. We encourage and help build partnerships between professionals and families to improve quality of services for children and youth with special health care needs.
The Gray Center - The Gray Center is a nonprofit 501(c)3 which cultivates the strengths of individuals with autism and those who interact with them, and globally promotes social understanding. Our vision is to assist all individuals in the shared challenge of building and maintaining effective social connections. Zeeland, Michigan
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Adapting Autism-Orienteted Interventions
Coffee Talk: Hyperarousal and FXS - The National Fragile X Foundation Quarterly Summer 2006: Hyperarousal and Fragile X Syndrome Tracy Stackhouse, MA, OTR and Sarah (Mouse) Scharfenaker, MA, CCC-SLP
ADD/ADHDADD Resources
Children and Adults with ADHD (CHADD)
Learning Disabilities Association (LDA)
National Attention Deficit Disorder Association (ADDA)
The ADHD-Autism Connection: A Step Toward More Accurate Diagnoses and Effective Treatment
Advocacy
Michigan Alliance for Families - Information, Support and Education. Not in Michigan looking for your Center for Parent Information and Resources find your state's information here.
Michigan Developmental Disabilities Council
Michigan Protection and Advocacy Services
The Arc of Michigan - Find your local chapter
Wrightslaw - Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
Yellow Pages for Kids- A resource of Wrightslaw, find educational consultants, psychologists, diagnostcians, health care specialists, academic tutors, speech language therapists, advocate and attorneys. You will also find government programs, grassroots organizations, special education schools and parent support groups.
App
Apps for Autism- Apps are listed in alphabetical order. You can sort apps by rating by clicking the "Rating" link above that column. You can rate apps by first clicking on the app name to visit the app detail page. Then, below the description of the app, click on the number of stars for your rating of the app.
Apps for Students with Autism Spectrum Disorders - The App Wheel - New tablet or iDevice and you don’t know where to start? Mark Coppin developed an “Apps for Students with Autism Spectrum Disorders” wheel that might have just the start you need. The wheel is divided into six Common Learning Characteristics: Social Skills, Need for Sameness or Routine, Sensory Sensitivity, Difficulty with Traditional, Learning Methods, Behavior and Communication.
Arc
The Arc - The Arc of the United States works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.
The Arc of Michigan
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Behavior
Autism Discussion Page - Facebook - This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum feel safe, accepted and competent. Although each child is different, with their unique strengths and challenges, some common strategies can strengthen the social, emotion, and cognitive security for most children on the spectrum. Come learn, share, and support.
Marcia Braden Ph.D., P.C. - Internationally known psychologist in the Fragile X world specializing in behavioral and educational issues.
The Braden Files - A Collection of articles from Dr. Marcia Braden.
Bike Riding
FatWheels.com - Extra duty training wheels.
Program to Educate All Cyclists (Michigan Program) - PEAC helps individuals with cognitive, physical, and emotional disabilities reach their cycling goals by providing: Basic skills programs and so much more. In addition, PEAC integrates cyclists with disabilities into the mainstream cycling community by giving them the skills necessary to participate in tours, races, and bicycle club rides.
Blood Draw
Blood Draw Social Story - Johnson Center for Child Health and Development.
Blood Draw Social Story - University of Rochester
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Calendars - Workshops/Activities Across the State
Autism Society of Michigan
Friendship Circle - located in West Bloomfield.
Horizon's Developmental Resource Center - located in Caledonia.
Jack's Place for Autism - located at Oakland University.
Michigan Alliance for Families
Xceptional Heroes - Xceptional Heroes (XH) is a group of friends, family members, caregivers, and individuals all united by our passion of supporting young adults with cognitive/intellectual disabilities in Genesee County, Michigan. XH was established to facilitate social, recreational, and life skills opportunities for individuals living a “differently-abled” life.
Covid-19
NFXF webinar: COVID-19 Vaccines and Fragile X - Dr. Craig Erickson answers questions o the topic of vaccinations and Fragile X
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Driver's Education
A & A Driving School- Driver's Rehabilitation Center of Michigan
Wheel to Drive - Wheel to Drive is licensed and approved by the state of Michigan to teach teen and adult drivers.
We welcome all students! We specialize in teaching new drivers with anxiety disorder and provide individualized instruction to the disabled including those with ADHD/Asperger syndrome and learning disabilities. Wheel to Drive also offers driver rehab services and driving evaluations for physically disabled drivers requiring low tech adaptive equipment including hand controls.
Our primary instructor has been teaching for over 25 years and has extensive experience working with students with special needs. We strive to meet the needs of each driver’s learning style. We pride ourselves in empowering our clients by providing the highest quality driver education to make them safe, confident and responsible drivers.
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Education
Center for Educational Networking - Michigan (CENMI)
Michigan Department of Education - Office of Special Education
Michigan Special Education Mediation Program (MSEMP) - helps parents, educators, and service providers develop productive relationships for resolving issues in early intervention and special education. If you have a problem, that you have not been able to resolve within your local program, this should be you next step.
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Females
Females Affected by Fragile X Syndrome - A Dr. Marcia Braden article.
Fragile X-associated Tremor/Ataxia Syndrome (FXTAS)
Fragile X - Carriers (premutation)
AGG interruptions and maternal age affect FMR1 CGG repeat allele stability during transmission
Associated features in females with an FMR1 premutation
Cardiovascular Problems in the Fragile X Premutation
Examination of reproductive aging milestones among women who carry the FMR1 premutation
Expanded Clinical Phenotype of Woment with the FMR1 Premutation
Fragile X Premutation Disorders - Expanding the Psychiatric Perspective
Molecular Advances Leading to Treatment Implications for Fragile X Premutation Carriers
Fragile X - Female Carriers (premutation) - FXPOI
FMR1: a gene with three faces
Fragile X-associated Primary Ovarian Insufficiency: Evidence for Additional Genetic Contributions to Severity
Reproductive and menstrual history of females with fragile X expansions
Welcome to the NICHD Primary Ovarian Insufficiency (POI) Website!
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The Genetics of Fragile X
Genetics and Inheritance - National Fragile X Foundation
Inheritance - Learn how fragile X is inherited. CDC site..
What Causes Fragile X - FRAXA Research Foundation
Guardianship
Guardianship - detailed information on guardianship and alternatives to guardianship at the Michigan Alliance for Families website.
Rethinking Guardianship/ Supported Decision Making
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Handwriting
Handwriting Worksheets - Make your own
Handwriting Worksheets - Alphabet
Holidays (they can be challenging for us but even more so for our children)
Chanukah - How to prepare your child for Chanukah.
Christmas - Christmas social story for a younger child
Christmas - app Christmas social story.
Easter - Social story.
Easter - app Easter social story.
Fireworks - Help your child cope with fireworks displays
Fireworks - 6 Tips to Having a Sensory Friendly 4th of July
Positively Autism - Fireworks social story
I Get - Fireworks App Social Story
Halloween- 13 Free, Printable Social Stories About Halloween And Trick-Or-Treating.
Free Halloween Social Stories | And Next Comes L- Hyperlexia Resources
"Happy Birthday" Meltdowns and Other Behavioral Conundrums
Holiday Picture Cards - Pictures to make your own social story for the holidays.
Thanksgiving - This story you can download in powerpoint and edit.
Various Social Stories - Events, Activities and Holidays.
Hyperarousal
Coffee Talk: Hyperarousal and FXS - The National Fragile X Foundation Quarterly Summer 2006: Hyperarousal and Fragile X Syndrome Tracy Stackhouse, MA, OTR and Sarah (Mouse) Scharfenaker, MA, CCC-SLP
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IEPs and more
Extended Grade Level Content (EGLCEs) - Michigan
Preparing for your Child's IEP - The National Fragile X Foundation
Individualized Education Program (IEP): Summary, Process and Practical Tips, prepared by: Goodwin/Procter
The IEP Goal Bank - The Goal Bank has been designed to allow users to locate specific goals as used in the eSIS SPED Full software. Click on a Content Area to proceed to specific Content Strands. From there, locate the specific strand and click to locate the Individual Goals.
Michigan Alliance for Families Webinars & Handouts - If you don't have the opportunity to attend one of Michigan Alliance for Families Workshops take the time to check out their numerous webinars archived on their website.
Wrightslaw - Wrightslaw an excellent resource for advocating for your child. Great resources online to understand the special education laws that pertain to your child and how to advocate for your child. You will find articles, cases, newsletters and resources about dozens of topics in the Advocacy Libraries and Law Libraries. Excellent books available. They have a link for yellow pages, which is a list of resources by state.
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Just for fun - with a little learning on the side
Disney Family - courtesy of Disney, crafts, recipes and more.
Do 2 Learn - A web site providing activities to promote independence in children and adults with special learning needs. FREE Teacher and Parent Material, Make-A-Schedule Program and FREE Computer-based Instruction.
Funbrain - Parents can trust Funbrain to deliver a fun and safe experience for even the youngest children. The Playground helps parents introduce their preschoolers to the Internet and teaches them how to manipulate the mouse and keyboard. Selected by FamilyFun magazine in its September 2010 issue as one of the top ten websites for kids. Funbrain is committed to providing a safe gaming environment that bridges learning and entertainment.
HelpKidzLearn - HelpKidzLearn is a collection of software for young children and those with learning difficulties to play online. The software is split into five sections: Early Years, Games and Quizzes, Stories and Songs, Creative Play & Find Out About.
Kidzone - Educational Worksheets, KidZone's printable preschool and kindergarten worksheets help younger kids learn their letters, numbers, shapes, colors and other basic skills. KidZone's printable grade school worksheets help older children learn phonics, reading, creative writing, math, geometry, science and geography.
Story Online - The Screen Actors Guild (SAG) Foundation is proud to bring you Storyline Online, an on-line streaming video program featuring SAG members reading Children's books aloud. Each book includes accompanying activities and lesson ideas.
Worksheet Library - Printable Worksheets, various subjects.
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L
Learning Disabilities Association of America
National Center for Learning Disabilities
Life Coach
Autism and Special Needs Life Coach
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Math
Coolmath.com - An amusement park of math and more... Lessons and games designed for fun!
Gamequarium - The site that swims with learning fun!
TouchMath - is a multisensory program that uses its signature TouchPoints to engage students of all abilities and learning styles.
Michigan Special Education
Michigan Administrative Rules for Special Education (MARSE)
Michigan Special Education Reference (MI-SER) - The Michigan Special Education ReferenceTM is a research tool provided to special education program directors, school administrators, teachers and other service providers, parents, and parent support groups who need information regarding special education quickly and in a searchable format. It brings related information in a uniform electronic format for ease of use.
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O
P
Pills - How to swallow
Autism Action - One mom's tip and including it as a goal in your child's IEP.
Swallowing Pills (Kidzmed)- Kidzmed is a programme developed to help families to teach children and young people how to swallow pills using a simple six-step technique. It was set up at the Great North Children’s Hospital, Newcastle, and has won the NHS Sustainability Award, the HSJ Value Award for Pharmacy and Optimisation and the Bright Ideas in Health Award for Demonstrating an Impact upon Quality Improvement.
Positive Behavior Supports
Michigan Positive Behavior Support (PBS) Network
Michigan Positive Behavioral Intervention & Supports - Fact Sheet.
Positive Behavioral Interventions and Supports - The TA Center on Positive Behavioral Interventions and Supports has been established by the Office of Special Education Programs, US Department of Education to give schools capacity-building information and technical assistance for identifying, adapting, and sustaining effective school-wide disciplinary practices.
Puberty
Special Growing Girl: A Guide to Puberty for girls with Special Needs - Amaszon
The Healthy Bodies Toolkit for Boys Check out the Appendix, helpful resources to teach private vs. public Also a parents' guide.
The Healthy Bodies Toolkit for Girls - Check out the Appendix, helpful resources to teach private vs. public. Also a parents' guide.
The Official Puberty Guide - American Autism Association
What's Happening to Me? - Amazon.
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R
Reading
Between the Lions - Games, Stories and Videos
Dolch Sight Words - Mrs. Perkins' Dolch Words Helping Your Children Read.
Fun Fonix - FREE phonics games, online phonics games for students, reading and spelling games for kids and adults from FunFonix.com!
Funbrain - Reading - free books, comics, games to encourage and build reading skills.
Raz-Kids - Raz-Kids is an award-winning teaching product that provides comprehensive leveled reading resources for students. With hundreds of eBooks offered at 27 different levels of reading difficulty, it's easy to put the right content in every student's hands. Kids access their leveled text through an interactive learning portal designed to keep them motivated and engaged. Every eBook is available in online and mobile formats, and allows students to listen to, read at their own pace, and record themselves reading. Students then take a corresponding eQuiz complete with an extended answer response to test comprehension and determine future instruction needs. Once a child has read ten or more of the leveled eBooks and passed each of the corresponding eQuizzes, they advance on to the next reading level where they have access to lengthier and more difficult text.
Starfall Learn to Read - The Starfall learn-to-read website is offered free as a public service. They also provide writing journals and books at a very low cost that can be used with the website or separately. Teachers around the country are using Starfall materials as an inexpensive way to make the classroom more fun and to inspire a love of reading and writing.
Recreation
Adative Gymnastices- YMCA, Monroe
Adaptive Skating- The adaptive skating class offers a recreational and competitive avenue for skaters with physical and intellectual disabilities. This program developed by the US Figure Skating has been proven to improve fitness, strength, balance, flexibility, socialization, and self-esteem. Ann Arbor.
Center for Health and Community Impact - Who We Are - Together, we are educators, clinicians, scientists, and community leaders devoted to advancing health, well-being, equity, and life success throughout communities locally, regionally, Wayne State University.
Downriver Panthers/VIP Camp Connect - Announcing a new partnership between VIP Camp Connect and Downriver Panthers are joining forces! Check out the Downriver Panthers at http://www.downriverpanthers.com/ or join our combined Facebook group Downriver Panthers/
We both have the same goal.....to offer a place for those with special needs where they feel comfortable.
Downriver Panthers is a community organization serving individuals with disabilities in the Downriver area. Their mission is to facilitate the development of adapted physical and recreation programs for children and adults with different abilities. They currently offer bowling, swimming and game nights. In the summer, they offer baseball. They are growing, and will be offering more things in the future.
We will still be separate organizations, but we will get together on certain fundraisers and activities. Speaking of that, we will be doing a Dearborn Ham Fundraiser in time for Easter, so watch out for that!
Check out the Downriver Panthers at http://www.downriverpanthers.com/ or join our combined group Downriver Panthers/VIP Campers
Far Conservatory - FAR Conservatory of Therapeutic and Performing Arts is a nonprofit organization that provides creative arts therapy and recreation services for children and adults with mental, physical and/or emotional impairments. FAR also promotes public understanding of the abilities and potential of persons who are mentally, emotionally or physically challenged.
Jack's Place - for Autism Foundation - Jack’s Place is a 501(3) c created by parents who have had first hand experience with the difficulty of accessing resources and information on Autism. Recognizing the importance of early diagnosis, daily care assistance and the eventual need for long term care. Jack’s Place intends to provide families who are affected by Autism services for persons at any age with Autism Spectrum Disorder (ASD) through a comprehensive menu of supportive, educational and referral services.
Michigan Hockey Flyers - The Michigan Flyers hockey team is for the development & enjoyment of hockey for developmentally or physically challenged athletes. We are affiliated with the St. Clair Shores Hockey Association & included as part of their 501(c)(3) status.(Facebook)
Northern Michigan Adaptive Sports (NMAS) - Traverse City (Facebook)
OUCares - Recreational programs at OUCARES are provided for individuals with ASD ages 3 through adulthood.
Sierra Adaptive Gymnastics and Cheer - Troy and West Bloomfield locations.
Wish Upon a Teen - Bloomfield Hills, MI - Autism Spectrum Programing in sports, tech, cooking and much more, they also have a sibling support group.
The Miracle League of Michigan - The City of Southfield is home to Michigan's first baseball field for children with any physical or mental disability. The Miracle League of Michigan is making dreams come true for some very special kids.
The Program to Educate all Cyclists - A non-profit based in Ypsilanti, Michigan that is dedicated to empowering individuals with disabilities through cycling. We believe that Everyone Can Ride.
West Michigan Special Hockey Association - The mission of WMSHA is to offer an amateur level ice hockey program for children and young adults with any developmental disability
Xceptional Heroes - Xceptional Heroes (XH) is a group of friends, family members, caregivers, and individuals all united by our passion of supporting young adults with cognitive/intellectual disabilities in Genesee County, Michigan. XH was established to facilitate social, recreational, and life skills opportunities for individuals living a “differently-abled” life.
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Sibling Support
Sibling Support Program - The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, off-beat, and appealing to a wide ability range), new friends, and discussion activities. Find SibShops here.
Social Security
Applying for a State ID - State of Michigan - before you begin the Social Security process your young adult/child (who will be applying as an adult, 18 or over) must have a State ID.
Applying for SSD or SSI online
FAQS for Representative Payees
Social Security Disability (SSD)
Social Security Income (SSI)
Social Security Record of Expenses- This is an Excel worksheet designed to capture expenses, the formulas are based on three adults in the household who will share in expenses (Mom, Dad and adult child with a disability, for example Groc. Child's % the formula for Jan is "=B2/3". If you had only two adults in the household you would change the "3" to a "2", if four, change the "3" to a "4". If you have another child who is adult but they are a full-time college student you do not have to include them because they are considered unable to contribute to household expenses. You need Excel to open and download to your computer. A pdf format is available here.
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What Every Parent Should Know About Supplemental Security Income (SSI) and your child turning 18
Selective Service - this is not tied to Social Security but it's critical individuals are informed that according to law, a man must register with Selective Service within 30 days of his 18th birthday. Selective Service will accept late registrations but not after a man has reached age 26.
Michigan Department of Health and Human Services Home Help - If your adult qualifies for SSI or SSDI you may qualify for Home Help.
Social Stories
12 Computer Programs, Websites and Apps for making Social Stories
Autism Friendly Social Stories- Boston Medical
Set BC - contains a wealth of information to create social stories, story boards for schedules and so much more.
Sandbox Learning - $$ Facebook but numerous social (success) stories available for a fee for you to personalize.
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Transitions
8 Tips on Transitioning your Child to Adult Services- The National Fragile X Foundation. The following tips for parents and guardians to consider when attempting to access adult services for their child is by no means an exhaustive list, but is based on important information the University of Denver’s Morgridge College of Education discovered when researching adult services for those with FXS.
Aspire, Inc. - Mid - Michigan - ASPPIRE (Autism Spectrum Partners Providing Instruction Recreation and Enrichment) strives to improve the quality of life for individuals on the autism spectrum and those with other disabilities by providing a wide range of partnership based services and strategies to meet the specific needs and individual’s goals throughout the lifespan.
Autism Speaks - Family Services - Transition Toolkit - A guide to assist families on the journey from adolescence to adulthood.
Developing an Estate Plan for Parents of Children with Disabilities: A 15-Step Approach
Got Transition - Got Transition/Center for Health Care Transition is a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. Our aim is to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
Selective Service - as part of a young males transition into adulthood it's critical individuals are informed that according to law, a man must register with Selective Service within 30 days of his 18th birthday. Selective Service will accept late registrations but not after a man has reached age 26.
Special Needs Alliance - The Special Needs Alliance is a national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them. Many of our member attorneys have family members with special needs; all of them work regularly with public benefits, guardianships/conservatorships, planning for disabilities and special education issues. We volunteer significant time to the special needs community and advocate for legislative and regulatory change to improve quality of life for individuals with disabilities.
U
University Programs - Michigan
MSU - Resource Center for Persons with Disabilities
Oakland University Disability Services
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Verbal Perseveration
The Many Functions of Perseveration- Dr. Marcia Braden, National Fragile X Foundation
Visual Strategies
Use Visual Strategies - Sometimes they call Linda Hodgdon the “Queen of Visuals” because of her efforts over more than 30 years to champion the use of visual strategies to support communication for individuals with Autism, Asperger’s and related communication needs. Linda Hodgdon, M.Ed., CCC-SLP is a Speech-Language Pathologist who is internationally known as a pioneer in developing the use of visual strategies to support communication for students with the communication, behavior or social skill challenges that are common in Autism Spectrum Disorders (ASD).
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Writing
Enchanted Learning - Enchanted Learning has excellent tracer pages that can be printed out for shapes, numbers and letters. You can even create your own books. You do not have to become a member, they have many free activities.
Handwriting Without Tears - Handwriting Without Tears is a nationally recognized and award-winning program designed by Jan Z. Olsen, OTR and geared for children and others who need to learn or relearn some of the most basic writing skills.
Kidzone - Kidzone has excellent tracer pages that can be printed and provides the opportunity for you to create customized tracer pages (you can do your child's name, address, phone number, spelling words - anything you want).
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