Every day since the beginning of school we have the same meltdown. Justin screams 'I wanna ride in daddy's car' and I wrestle him into the car while he fights, kicks, and slaps me. Daddy drives Lindsey to school because itt's on his way to work. Justin's school is in the opposite direction so I drive him. We tried switching cars - that doesn't help either - he just wants daddy, and daddy doesn't have time to go that far out of his way. You would think after 4 months of school he would get that no amount of tantrum is going to change the plan, but nope.
Anyway, once I get him in the car and start driving he screams. And he doesn't stop till we get there. He also pulls off his socks and shoes and throws them. Sometimes they hit me, sometimes they land way in the back. So I would get to school and then have to search the van for his socks and shoes in the carpool line. So I quit attempting to put shoes on him at home. Now I take his socks and shoes and put them in the floorboard out of his reach and he rides barefoot to school and we put shoes on when we get there. He's fine once we're there. One morning a few weeks ago I got to the carpool line and not only was he barefoot but Houdini had also removed his shirt - while in a 5 point harness.
So anyway yesterday was like the rest, meltdown, kicking, hitting, etc but now I also have bronchitis and I'm so not feeling up to dealing with this, but I wrestle him into the car and we ride to school. We get there and I turn around and look for the shoes and I don't see them. "Justin, where are your shoes?" - "at home". Ok, totally my fault for failing to get them, but that little turkey knew his shoes weren't in the car, and he let me drive all the way there. So, 15 minute drive home and he cries while I get his shoes, because he wants out of his carseat and wants to come in and then we drive back to school - again. Little turkey.
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:
There has to be some way to overcome this behavior. I hope it is just a phase. Have you presented this to the fxs listserv to see if any parents have a suggestion??
This sounds totally familiar. Except change Justin for Blake and make it a bus instead of my van.
And, he fights me every time I get him in his carseat, slapping and kicking. And he takes his shoes and socks off and throws them at me. I have had flying shoes hit me in the head while driving
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