Resources
We know how frustrating it is not to know where to go for help. Below are links, information, and contacts that may help direct you to the right places.
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. [email protected]. 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
Jump to:NationalFragile X SpecificResearchState & LocalADD / ADHDAdvocacyAppsArcBehaviorBike RidingBlood DrawCalendars — Workshops/Activities Across the StateDriver's EducationEducationFemalesFragile X-associated Tremor/Ataxia Syndrome (FXTAS)Fragile X — Carriers (premutation)Fragile X — Female Carriers (premutation) — FXPOIThe Genetics of Fragile XGuardianshipHandwritingHolidaysHyperarousalIEPs and MoreJust for Fun — with a little learning on the sideLearning DisabilitiesLife CoachMathMichigan Special EducationPills — How to SwallowPositive Behavior SupportsPubertyReadingRecreationSibling SupportSocial SecuritySocial StoriesTransitionsUniversity Programs — MichiganVerbal PerseverationVisual StrategiesWriting
N
National
F
Fragile X Specific
- The Top Ten Things You Should Know About Fragile X Syndrome
- Advances in the treatment of Fragile X SyndromeThe FMR1 mutations can cause a variety of disabilities, including cognitive deficits, ADHD, autism, and other socioemotional problems. Studies of metabotropic glutamate receptor 5 pathway antagonists in animal models have demonstrated benefits in reducing seizures, improving behavior, and enhancing cognition.
- Autism Spectrum Disorder in Fragile X Syndrome: Cooccurring Conditions and Current TreatmentHalf of males and nearly 20% of females with FXS met DSM-5 criteria for ASD. The FXS+ASD group had higher prevalence of seizures, sleep problems, and behavior issues.
- The Developmental & Fragile X Resource Centre
- Dr. Mike's Psychiatry Blog
- Fragile X Premutation Disorders — Expanding the Psychiatric PerspectiveFragile X-associated psychiatric manifestations serve as a useful model for a molecular genesis of neuropsychiatric illness.
- Fragile X spectrum disordersReview focusing on phenotypes and genotypes of children with Fragile X Spectrum Disorder (FXSD).
- GeneReviews — FMR1 Related DisordersA publicly funded medical genetics information resource for physicians, healthcare providers, and researchers.
- Marcia Braden Ph.D., P.C.Internationally known psychologist specializing in behavioral and educational issues in Fragile X.
- Your Genes Your Health — Fragile X
S
State & Local
- Friendship CircleLocated in West Bloomfield. Offers an interactive environment for children with special needs to learn basic life skills in a fun and supportive environment.
- Michigan Alliance for FamiliesStatewide resource connecting families of children with disabilities to resources to improve their children's education.
- Michigan Family to Family Health Information Center (MI F2F)Part of a federal initiative providing information and education on disability and health-related issues to families of children with special health care needs.
- The Gray CenterNonprofit cultivating the strengths of individuals with autism and promoting social understanding. Zeeland, Michigan.
A
ADD / ADHD
- Coffee Talk: Hyperarousal and FXSNFXF Quarterly Summer 2006: Hyperarousal and Fragile X Syndrome by Tracy Stackhouse, MA, OTR and Sarah Scharfenaker, MA, CCC-SLP.
- Children and Adults with ADHD (CHADD)
- Learning Disabilities Association (LDA)
- National Attention Deficit Disorder Association (ADDA)
- The ADHD-Autism Connection (Amazon book)A Step Toward More Accurate Diagnoses and Effective Treatment.
A
Advocacy
- Michigan Alliance for FamiliesInformation, Support and Education.
- Find your state's Parent CenterNot in Michigan? Find your Center for Parent Information and Resources.
- Michigan Developmental Disabilities Council
- Michigan Protection and Advocacy Services
- The Arc of Michigan — Find your local chapter
- WrightslawAccurate, reliable information about special education law, education law, and advocacy for children with disabilities.
- UCP of Metropolitan Detroit
- Yellow Pages for KidsFind educational consultants, psychologists, diagnosticians, health care specialists, academic tutors, speech language therapists, advocates and attorneys.
A
Apps
- Apps for Autism — Autism Speaks
- Apps for Students with Autism Spectrum Disorders (App Wheel)Mark Coppin's wheel divided into six Common Learning Characteristics: Social Skills, Need for Sameness, Sensory Sensitivity, Difficulty with Traditional Learning Methods, Behavior and Communication.
- Best Apps for Kids
A
Arc
B
Behavior
- Autism Discussion Page — FacebookTools that help children on the spectrum feel safe, accepted and competent, developed by Bill Nason, MS, LLP.
- Marcia Braden Ph.D., P.C.Internationally known psychologist specializing in behavioral and educational issues in Fragile X.
- The Braden FilesA collection of articles from Dr. Marcia Braden.
B
Bike Riding
B
Blood Draw
C
Calendars — Workshops/Activities Across the State
- Friendship CircleLocated in West Bloomfield.
- Horizon's Developmental Resource CenterLocated in Caledonia.
- Michigan Alliance for Families — Upcoming Events
- Autism Society of Michigan
- Jack's Place for Autism
- Xceptional HeroesSupporting young adults with cognitive/intellectual disabilities in Genesee County, Michigan.
D
Driver's Education
E
Education
- Center for Educational Networking (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.
F
Fragile X-associated Tremor/Ataxia Syndrome (FXTAS)
F
Fragile X — Carriers (premutation)
- AGG interruptions and maternal age affect FMR1 CGG repeat allele stability
- Associated features in females with an FMR1 premutation
- Cardiovascular Problems in the Fragile X Premutation
- Expanded Clinical Phenotype of Women with the FMR1 Premutation
- Examination of reproductive aging milestones among women who carry the FMR1 premutation
- Molecular Advances Leading to Treatment Implications for Fragile X Premutation Carriers
F
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
- Health and reproductive experiences of women with an FMR1 premutation
- Reproductive and menstrual history of females with fragile X expansions
- NICHD Primary Ovarian Insufficiency (POI) Website
G
The Genetics of Fragile X
G
Guardianship
H
Handwriting
H
Holidays
- Chanukah — How to prepare your child
- Christmas Social Story (younger child)
- Easter Social Story
- Fireworks — Help your child cope
- Fireworks — 6 Tips for a Sensory Friendly 4th of July
- Halloween — 13 Free Printable Social Stories
- Hanukkah Social Story
- "Happy Birthday" Meltdowns and Other Behavioral Conundrums
- Holiday Picture CardsPictures to make your own social story for the holidays.
- Spring Break Social StoryDownload in PowerPoint and edit.
- Thanksgiving Social Story
- Various Social Stories — Events, Activities and Holidays
I
IEPs and More
- Extended Grade Level Content (EGLCEs) — Michigan
- Preparing for your Child's IEP — National Fragile X Foundation
- Individualized Education Program (IEP) Guide — Autism SpeaksSummary, Process and Practical Tips, prepared by Goodwin/Procter.
- The IEP Goal BankLocate specific goals as used in the eSIS SPED Full software.
- Michigan Alliance for Families Webinars & HandoutsNumerous webinars archived on their website.
- WrightslawExcellent resource for advocating for your child and understanding special education laws.
J
Just for Fun — with a little learning on the side
- Disney FamilyCourtesy of Disney — crafts, recipes and more.
- Do 2 LearnActivities to promote independence in children and adults with special learning needs. FREE Teacher and Parent Material.
- FunbrainFun and safe experience for even the youngest children. Selected by FamilyFun magazine as one of the top ten websites for kids.
- HelpKidzLearnSoftware for young children and those with learning difficulties.
- KidzoneEducational worksheets for preschool through grade school.
- Story OnlineSAG Foundation streaming video program featuring members reading children's books aloud.
- Worksheet LibraryPrintable worksheets, various subjects.
L
Learning Disabilities
L
Life Coach
M
Math
M
Michigan Special Education
P
Pills — How to Swallow
P
Positive Behavior Supports
P
Puberty
- Special Growing Girl: A Guide to Puberty for Girls with Special NeedsCheck out the Appendix for helpful resources to teach private vs. public. Also includes a parents' guide.
- The Healthy Bodies Toolkit for Boys
- The Healthy Bodies Toolkit for Girls
- The Official Puberty Guide — American Autism Association
- What's Happening to Me? (Amazon)
R
Reading
- Between the Lions — Games, Stories and Videos
- Dolch Sight WordsMrs. Perkins' Dolch Words — Helping Your Children Read.
- Fun Fonix — Free Phonics Games
- Raz-KidsAward-winning leveled reading resources with hundreds of eBooks at 27 different reading levels.
- Starfall Learn to ReadFree public service website. Teachers use Starfall materials as an inexpensive way to inspire a love of reading and writing.
R
Recreation
- Adaptive Gymnastics — Monroe Family YMCA
- Adaptive Skating — Ann Arbor Figure Skating ClubRecreational and competitive avenue for skaters with physical and intellectual disabilities. Improves fitness, strength, balance, flexibility, and self-esteem.
- Center for Health and Community Impact — Wayne State University
- Downriver Panthers / VIP Camp ConnectCommunity organization serving individuals with disabilities in the Downriver area. Offers bowling, swimming, game nights, and summer baseball.
- FAR Conservatory of Therapeutic and Performing ArtsProvides creative arts therapy and recreation services for children and adults with mental, physical and/or emotional impairments.
- Jack's Place for Autism FoundationProvides families affected by Autism services for persons at any age with ASD.
- Michigan Hockey FlyersHockey team for the development & enjoyment of hockey for developmentally or physically challenged athletes.
- Northern Michigan Adaptive Sports (NMAS)Traverse City.
- OUCares — Oakland UniversityRecreational programs for individuals with ASD ages 3 through adulthood.
- The Miracle League of MichiganMichigan's first baseball field for children with any physical or mental disability.
- The Program to Educate All CyclistsNonprofit based in Ypsilanti dedicated to empowering individuals with disabilities through cycling.
- Sierra Adaptive Gymnastics and Cheer
- West Michigan Special Hockey AssociationAmateur ice hockey program for children and young adults with any developmental disability.
- Wish Upon a TeenTroy and West Bloomfield locations. Autism Spectrum Programming in sports, tech, cooking and more.
- Xceptional HeroesSocial, recreational, and life skills opportunities for individuals with cognitive/intellectual disabilities in Genesee County.
T
Transitions
- 8 Tips on Transitioning your Child to Adult Services — NFXF
- Aspire, Inc. — Mid-MichiganImproves quality of life for individuals on the autism spectrum and those with other disabilities.
- Autism Speaks — Transition ToolkitA guide to assist families on the journey from adolescence to adulthood.
- Got TransitionImproving transition from pediatric to adult health care.
- Developing an Estate Plan for Parents of Children with Disabilities: A 15-Step Approach
- Special Needs AllianceNational nonprofit helping individuals with disabilities, their families and the professionals who serve them.
U
University Programs — Michigan
V
Verbal Perseveration
V
Visual Strategies
Know a resource we're missing?
If you come across something that would be beneficial to other families, please send it our way.
[email protected]