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Eastern Massachusetts Fragile X

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  • One of our fragile X family members is going through a terrible heartache. Desiree's son, Garrett, is being called home. Garrett is 5 years old and has both fragile X syndrome and Dysautonomia. Throughout Garrett's long illness, Desiree has been his sole/primary caregiver while at the same time raising, Connor, Garrett's twin brother.

  • Teal Pumpkin Project – The 10 Best Allergy-Free Halloween Treats...this is a great idea for helping out those children who have allergies and are sensitive to sugar. I am going to have a teal pumpkin at my house! #Teal Pumpkin Project

  • Love this idea >>> Might use for Christmas and Valentine's Day Gifts too! ... Bead Knecklace Halloween Handout

  • Create handwritten letters online - using your own hand writing fonts | Writing Fonts

  • DOWNLOADABLE EMBELLISHMENTS I ... 35 elegant vectors that are fabulous for finishing rooms, furniture, and other vinyl embellishment projects @ My Vinyl Designer (

  • Organize Your Whole House with One Trip to the Dollar Store ~ MAD IN CRAFTS. Love this idea. dUH!

  • Mix and Match for More than 200 Free Home Management Binder Printables!!

  • Ladybug's Teacher Files: Halloween Gift: A Bit of Light...

  • Halloween crafts: DIY Halloween Apothecary Jars’ Tutorial from Magia Mia. Turn plastic vitamin bottles into creepy apothecary jars using a glue gun and chalkboard paint..

  • Yes, you could make a real sugar skull for the Day of the Dead -- if you have a proper skull mold and 14+ hours of drying time! But we think our gorgeously creepy pumpkin stencil, with its intricate etching and lovely floral

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It is IEP season, let’s make them suck less!

This is every parent of a child with special needs’ favorite time of year (and if you buy that, I have a gorgeous bridge for sale in Boston…the Zakim, you’ll love it!) Every year at this time the e-mails and facebook posts start piling up as we all try to wrap up the school year.

Schools wanting to remove services or change placements are always the most stressful aspects of the IEP process, in my experience, but every step is stressful. There is nothing fun or relaxing about sitting in a room with a table full of virtual strangers as they list all the ways your child is deficient. IEPs are about deficiencies and delays and every way in which your child differs from the “norms” that they use to measure such things. It’s emotionally and physically draining.

There are ways to make IEPs suck less however! The most important and the easiest is educating yourself about the process. You need to know your rights, your child’s rights & you need to know the proper procedures…you cannot rely on school personnel, as nice as they may be, to protect your rights, your child’s rights or even understand the IEP process. You need to know this cold.

Many parents find the entire process mystifying and confusing. I have totally been there on a bunch of occasions! The process is complicated and there are a lot of rules to follow but do not just say, “It’s too complicated. I will never understand it.” It’s that whole self-fulfilling prophecy thing, if you say that or believe that, it will become the truth. You won’t ever understand the process unless you educate yourself! It is not that mysterious once you know the basic rules.

If you can find and/or afford an experienced Educational Advocate or Special Education Attorney, that is awesome. We’ve had tremendous success using an Advocate. BUT hiring an advocate or lawyer does NOT relieve you of the responsibility of knowing your rights, your child’s rights and the proper procedures. You still need to make the effort to get that basic level of understanding down.

My first suggestion is always attending a class, the Federation for Children with Special Needs here in Massachusetts offers a variety of free courses around the Commonwealth beginning with a Basic Rights workshop. Take a course like that at the very least. It costs you nothing but the time and effort of attending and your child is worth that and so much more, right? Right. If you are not from Massachusetts find out what organizations exist in your state: State Parent Training & Information Centers.

Another favorite of mine are the Wrightslaw seminars (2014/2015 Schedule of Programs), they offer a variety of courses around the country. They are not state specific, federal law guides IEPs and state law must meet or exceed those standards. If your state law does not meet the federal standards, it is not valid. These are not cheap courses, the cost varies depending on the length of the course and the group or agency sponsoring the event, but they provide priceless information.  I have never felt more confident in an IEP meeting than I do now that I’ve attended the course. Now my questions center on appropriate goals and services for my particular child because I’ve got the basics down.

If you cannot attend any basic rights course for whatever reason, there are a ton of books and online resources to use. These are some of my favorites:

National Fragile X Foundation:

Wrightslaw – This is a great site to use if you have a specific question, the search functionality is great and will give you lots of guidance.

I can promise you, you will NOT ever regret making the effort and taking the time to get down the basics. It’s not a guarantee that you will never have a problem because schools continue to find new and creative ways to be total jerks BUT it is a guarantee that you will be able to keep them honest while protecting you and your child’s educational rights. The relief that comes from having that confidence drops the stress level of IEP meetings down tremendously. Even if your IEP is tomorrow, you have time to start…but it is easier if you have a little more time.