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Thursday, February 24, 2005
My first blog
2/24/05
I am Tracy ,mother of Danny. Danny is an 18 year old with fragile x syndrome. He is the youngest of 3 boys and the only one with fragile x. We live in Texas. Our household is made up of (hubby/dad) Ken , Danny and me. We also share it with Sammy the cat, Ernie and Cookie, the pugs and Gil the beta fish. The two older boys, Greg 22 and Tommy 20 no longer live at home. Greg lives with his girlfriend Christine. Tommy lives in Georgia with friends and is working at cylinder head shop.
We found out Danny had fragile x in 1991. We knew all along had he something,mentally retarded or autistic. I don`t even remember if i had ever heard of fragile x when the neurologist suggested we test for it. Dannys ear tipped him off that he might have it. Big ears are a physical characteristic.
I was devasted with the results. We took Danny to Denvers Children's Hospital to be evaluated. At the time it was the leading institution studying fragile x at the time. Danny is retarded (mildly) and autistic.
Danny went to a really good pre-k school. I loved Kooken Educational Center.I made some great friends there. Danny still goes to school with some of the same kids from preschool.
When Danny was in modified kindergarten I went to an autism society meeting and heard about inclusion. I went for it. It turned out to be a nightmare. The school system really didn`t want to do it, but legally i had them over a barrel so they did it , badly. He was mainstreamed with an aide the last half of kindergarten, 1st and 2nd grade. I pulled him out before the end of 2nd grade and home schooled him for 4 years. I finally had him toilet trained at 10.
After 4 years of homeschooling i was going crazy and sent him back to school.
I decided as long as he was happy and not hurt they could do what they wanted( self contained classroom)He went to elementary school for a year than to jr high for 3 years. Now he is in his 2nd year of high school and all is going ok.
Feb.13th his team won gold medals in volleyball at the state special olympics winter games.Now its basketball season and they have tournement next weekend.
Ok thats all for now I`ll write more later.
I am Tracy ,mother of Danny. Danny is an 18 year old with fragile x syndrome. He is the youngest of 3 boys and the only one with fragile x. We live in Texas. Our household is made up of (hubby/dad) Ken , Danny and me. We also share it with Sammy the cat, Ernie and Cookie, the pugs and Gil the beta fish. The two older boys, Greg 22 and Tommy 20 no longer live at home. Greg lives with his girlfriend Christine. Tommy lives in Georgia with friends and is working at cylinder head shop.
We found out Danny had fragile x in 1991. We knew all along had he something,mentally retarded or autistic. I don`t even remember if i had ever heard of fragile x when the neurologist suggested we test for it. Dannys ear tipped him off that he might have it. Big ears are a physical characteristic.
I was devasted with the results. We took Danny to Denvers Children's Hospital to be evaluated. At the time it was the leading institution studying fragile x at the time. Danny is retarded (mildly) and autistic.
Danny went to a really good pre-k school. I loved Kooken Educational Center.I made some great friends there. Danny still goes to school with some of the same kids from preschool.
When Danny was in modified kindergarten I went to an autism society meeting and heard about inclusion. I went for it. It turned out to be a nightmare. The school system really didn`t want to do it, but legally i had them over a barrel so they did it , badly. He was mainstreamed with an aide the last half of kindergarten, 1st and 2nd grade. I pulled him out before the end of 2nd grade and home schooled him for 4 years. I finally had him toilet trained at 10.
After 4 years of homeschooling i was going crazy and sent him back to school.
I decided as long as he was happy and not hurt they could do what they wanted( self contained classroom)He went to elementary school for a year than to jr high for 3 years. Now he is in his 2nd year of high school and all is going ok.
Feb.13th his team won gold medals in volleyball at the state special olympics winter games.Now its basketball season and they have tournement next weekend.
Ok thats all for now I`ll write more later.
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I also often write about Fragile X on my blog - http://www.ericberlin.com. I have a 4-year-old with it, and a non-affected 2-year-old daughter. Feel free to drop by if you'd like.
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