Basically FX

There are so many options for educational materials, therapies and supplements for use by the Fragile X community that I sometimes find it very hard to keep track.  I save e-mails from the Fragile X e-mail list for reference but I thought it might be worth starting a list and making it available to everyone. 

This list is in no way definitive.  I’m not recommending that people use any of these options in particular.  We certainly haven’t tried them all.  It is simply a list of options I’ve gathered over the years from other parents and therapists that others may want to investigate or discuss with their own team of experts.

If anyone has anything they’d like to add, leave a comment and I will incorporate it into the page.  If anyone has any comments regarding their experience with any of these approaches, positive or negative, I would also like for you to leave a comment.

Please note that I’m not intending to include any medications requiring prescriptions.  If this is something you would like to see I would suggest visiting Dr. Mike’s Psychiatry Blog (Dr. Mike Tranfalgia, co-founder of Fraxa.)  He has litterally written the book on this topic.

Resources/Links:

• Bridges 4 Kids IEP Goal Bank - warning, this is a large .pdf file.
• Child Safe - simple, sensible ways to keep children and families safe.
• Cuisenaire Rods – wooden (or plastic) rods of varying colours and lengths that help with math skills and are used as math manipulatives.
• Edmark – sight word based reading software.
• Genetics of Pregnancy Encyclopedia – information regarding Fragile X syndrome. (Thanks Ali!)
• GiggleBug – to find a missing child, the adult triggers the Giggle Bug by pressing the button on the hand-held unit. The Giggle Bug will emit a loud, distinctive but child-friendly “beep” until the child is located and the adult resets the unit.
• Kumon Method - a comprehensive program that develops the necessary skills to help a child progress from counting to calculus.
• Lose the Training Wheels - The mission of Lose The Training Wheels is to teach individuals with disabilities to ride a conventional two wheel bicycle and become lifelong independent riders.
• Model Me Kids – videos demonstrating social skills by modeling peer behavior at school, on a playdate, at a birthday party, on the playground, at a library, restaurant, and more.
• PictureSET -  a collection of downloadable visual supports that can be used by students for both receptive and expressive communication in the classroom, at home, and in the community.
• Starfall.com -a free public service to motivate children to read with phonics.
• Touch Math - a multisensory program that uses its signature TouchPoints to engage students of all abilities and learning styles.
• Your Therapy Source - online resource for pediatric
  occupational and physical therapy publications for professional, home and school
  use.

Therapies:

• Applied behavior analysis (ABA)
• Biofeedback
• Hippotherapy

Supplements:

• B-12
• Curcumin (all natural supplement that some use instead of minocycline.)
• Acetyl-l carnitine (we use the liquid version by MRM, the taste is very strong.  We add it to juice to make it palatable.)
• Folic Acid (while you technically don’t need a prescription for folic acid the only practical way to administer the high dosage required is by getting a prescription for a custom compound.)
• Melatonin