The Griffin Adventures: school

Wednesday, December 3, 2008

Improvements galore

Dear friends and family,
Our school system is really trying to step up a notch. They are creating a sensory room and also splitting the CDC classroom into two separate classes. They have hired a behavior therapist and also a new BIT teacher. It is all moving forward under the leadership of Lisa Ventura, Dr. Stan Curtis and Dr. Patsey Thomas.
We are making huge improvements in the special education department. One day at a time and one child at a time...
This week we have the staff Christmas party and next week, we make gingerbread houses. We have all three of their Christmas parties at the same time the third week of December. In addition to all of that, the kids have dental appointments. Brody has had two surgeries already so he has to go and he couldn't be rescheduled until summer.
We bought a swing for our living room last weekend and I can't wait to get it up. It is an EZ chair. Does anyone have an extra net swing that they could sell?
Keep us lifted up during December.

Monday, November 10, 2008

This is last year's photo at this time of year. We plan on taking a Christmas picture soon, but this year we will have Millo. Brody is not feeling well and has been asleep since he came home from school. Bubba got a job at the kids school as an assistant in the BITE program. Today was his second day and he loves it. We will have insurance for Brody as of December 1. We are so thankful and proud of the changes our school system is making for the benefit of all the exceptional kids.

The Top Ten Things You Should Know About Fragile X Syndrome

By Mary Beth Langan and Sally Nantais

1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:http://www.fragilex.org/, the National Fragile X Foundationhttp://www.fraxa.org/, Fraxa Research Foundationhttp://www.conquerfragilex.org/, Conquer Fragile X Foundation** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com