sherryr
Registered: 08/20/09
Posts: 4
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Reply with quote | #1 |
my child acts out banging head on wall- hitting - breaking crayons screaming cussing throwing things at school when she is furstrated and cant do the work. she has only been diaginosed with fx since june. last year was was her second year in kindergarten she was given a iep when school was in its last month. this year they put her in first. 2 years a go we were told she had adhd odd and serperation anexity and was they thought bi poplar. we tried different meds then decided last year to pull all meds. they told me today when i went on the second trip of the day she was just being very mean I dont know what to do anymore i bring her home and she flips back in to a good mode. i gave the school literture on fragile x but since she is very smart they act like i made every thing up concerning her. she talks and acts like a grownup until she has her melt downs she cant retain math and she cant read or retain her abcs but since she looks normal they say she is just mean i dont know what to do any more
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sherry rowland |
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Gayle
Registered: 01/09/06
Posts: 101
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Reply with quote | #2 |
Hugs Sherry,
Frustration and anxiety are often triggers for melt downs for these kids. If she flips right back into "good mode" when you bring her home, it might be that going home is the reward she is seeking. Is she in full inclusion (regular classroom)? You might find that a NSH (non-severly handicapped) classroom is a better fit for her. The classes are smaller and lessons are modified to fit the student. You would need to visit each placement to make sure that it's a good fit. Keep in mind that I'm in a different state so the terminology may be different. We had my son in full inclusion until 2nd grade when we decided that NSH was the way to go for him. It was not, as I had been lead to believe, just a place to "park" the trouble kids. His anxiety level dropped right away. He didn't become angelic but he improved. And he was being taught by teachers who were trained to deal with his outbursts. So I wasn't being called twice a day.
He is now 16 and we have just "graduated" from behavior therapy. I wish I'd done that sooner.
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sherryr
Registered: 08/20/09
Posts: 4
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Reply with quote | #3 |
hi my child has been moved to another school here in our town of rolla . She goes to special classes in a room of about 6 with a teacher and 2 aides. We are still trying to find a dr in a 100 mile radius of us who could give us med. for irritbilty , the school still sees throwing desk- tearing up papers- cussing- spitting- hitting -banginghead -biting herself
and screaming. they are trying her a couple of hours a day in the regular class room. I have told them every thing i know about fragile x and odd and anxity serperation -bipolar. but they see this angelic child that turns in to a demon when she flips. so they think she is just spoiled. they use soap in mouth for cussing and when she says she will kill them they said it was just for attention. I told them we have had to take steak kinves and sharp sticks out of her back pack we our selfs have been attacked by this 48 pd 7 year old so its not just attention . how do you get people to understand .sometimes i want to make a tee shirt that says Im fragile x and i cant help it thanks for listening to me rant
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sherry rowland |
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BHipwell
Registered: 09/26/09
Posts: 4
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Reply with quote | #4 |
Hi Sherry,
I hope you are hanging in there. We too have a child with FX and have had similar issues like yours. Our son Payton's most common reaction to things he doesn't want to do is to lay on the floor, cry, scream, etc. With FX, he is very hyper-jointed and nearly impossible to pick up as he turns into a ball of Jelly. After a few years, we visited Dr. Kravitz in Chicago (we live in Florida). After a couple medications, we think we have found one that works. Essentially, FX children have anxiety and ADD. The problem is determining which one feeds off the other. We have only seen Dr. Kravitz once, but she has worked with us through email and telephone to find a prescription that works. Where do you live? This will help others locate a doctor for you. Even though you may have to drive or fly, a single visit can put you on track for long term solutions. Hope this helps!
Brandon
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Gifts of love and awareness for friends and families of those with Fragile X. http://www.zazzle.com/FragileX* (a portion of proceeds to benefit the two major Fragile X non-profit organizations) |
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sherryr
Registered: 08/20/09
Posts: 4
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Reply with quote | #5 |
thank you both for answering .I was beginning to thank I was the only one. I live in Rolla missouri which is 100 miles from
st. louis mo . do You have the problem of people who dont know your child assuming that they are just mean and spoiled. I get so tried of that and even people in the family advising me to spank. They wont acceppt the fact this is a medical problem. sometimes i set and cry. because when she is calm she is a angel. and she doesnt understand why she flips . god be with everyone out there who deals with this dailey . we are blessed to have these kids but we earn them.and i wonder about the ones who have never been diagnosed or maybe misdiagnosed. sherry
st. Louis mo and
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sherry rowland |
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BHipwell
Registered: 09/26/09
Posts: 4
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Reply with quote | #6 |
Although it may be a bit of a drive, I would suggest trying to get an appointment with Dr. Barry-Kravitz. She is at Rush University in Chicago. Your visit will be 2-3 hours and can really help get you going in the right direction.
As for the outbursts, we found success by having our son's teachers set expectations. Something like "first we will read, 2nd math, and then we will play." It also takes awhile for others to recognize outbursts before they happen. This is critical and any guidance you can give will help.
As for the shirt, you gave me some inspiration. See the link below, click view all products and look at the shirt "For Kids - Don't Stare." We know how you feel.
B
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Gifts of love and awareness for friends and families of those with Fragile X. http://www.zazzle.com/FragileX* (a portion of proceeds to benefit the two major Fragile X non-profit organizations) |
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SDK
Registered: 11/06/08
Posts: 1
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Reply with quote | #7 |
If you can, make a trip to St. Louis on Saturday,October 24th. Tracy and Mouse are giving a symposium at Washington University that day sponsored by the Fragile X group in St. Louis. I've heard they are great and it would be worth the trip for you. There is more information on the resource page. |
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sherryr
Registered: 08/20/09
Posts: 4
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