Haven't posted in quite a while. I've been meaning to, but it's hard to make myself do it at times. I went through a valley a few weeks ago worse than the initial diagnosis. I guess we had a few particularly bad meltdowns, and the realization that he's only 5, and the fear that it could get a LOT worse. I dunno, but I spent the better part of a week feeling that I could burst into tears at any moment and did a few times. That is very much not like me...I cry over sappy movies, yes, but real life very rarely. I finally told my Sunday School class, asked for prayer, and began feeling better the next day. So anyway....I'm finding myself praying more, and feeling more optimistic.
Every time I go to school either a teacher, an aide, the nurse...somebody, always stops me to tell me how much they love Justin. "He just smiles all the time", "he's the happiest kid I know", "he just lights up my day", etc... one even told me "everyone should have a child like him". I am thankful beyond measure for this - he obviously saves his worst behavior for me. I suppose that is a good thing, but it also wears on me emotionally that they get so much of the loving, happy Justin, and I get that mixed with outbursts of angry, violent, wild Justin. If only I could keep him the loving, happy, smiley boy all the time......
Welcome!
I need a new blog title, but waiting for inspiration. :) In the meantime, this is a blog about our family, having a child with Fragile X Syndrome, and just life in general.
Followers
Tim and the kids
Waiting for a parade at WDW.
The whole family plus a mouse!
We had an awesome time at Disney this year! Justin was on cloud nine meeting his favorite characters!
About Me
- Leanne
- Happily married 19 yrs to Mr Right. I'm a SAHM to my 12yr old drama queen, princess Lindsey and my 9 yr old little buddy Justin.
Justin and mommy
Uncle Scott
My brother Scott also has Fragile X, but was undiagnosed until a few years ago when Justin was diagnosed.
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:
www.fragileX.org, the National Fragile X Foundation
www.FRAXA.org, Fraxa Research Foundation
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
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:
www.fragileX.org, the National Fragile X Foundation
www.FRAXA.org, Fraxa Research Foundation
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
Awesome Fragile X related blogs
Lindsey and Justin
Christmas 06
2 comments:
So sorry to hear things are difficult right now.
OMG! This sounds soooo much like me. Our oldest and most affected is 5 (we have 3 FX kiddos). We get the same comments at school, which makes me happy because I'd rather him be like that with other people (probably because I don't want the "your kid has behavior issues, what kind of mom are you..blah, blah, blah" fears that I would get if he showed the world the same as he shows me at home. Selfish, I know. I just always try to hold on to the happy kid even when he's having an outburst that I totally do not understand. I try to remember that God is bigger than me, him and Fragile X. Just because I have NO IDEA what the future holds doesn't mean I have to assume that it's going to be bad. Don't get me wrong, I'm not there yet. But I try. Hang in there. If you ever want to email, I'd love to share stories....codds4@sbcglobal.net.
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