Her caelyn (her_caelyn) wrote in fragile_x,
Her caelyn

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Thank you

Thank you all for being so kind to answer, and I am sorry it has taken me so long to post here. I had a long post written out the other day but before I could finish lj ate it somehow so trying to redo this.

I have 2 boys, they both live with my parents now after living with their dad for several years (that is the long story part). My parents only live about 10 minutes from me, and I go over there several times a week, so it has worked out for the best for the boys I think. The youngest "J" was diagnosed with fragile x years ago. Before that he was diagnosed with tetrasomy p-18, but now his offical diagnosis is fragile x. That is confusing to me because from what I have read on both conditions there is no way a person could have both. I read that one was a broken arm of the chromosome and the other was a missing arm, how can something be broken if its missing? If it were up to me I would have him retested but unfortunately it isnt because of the custody stuff. I dont think it would make any difference really in how things are handled with him now anyway.

My concerns really are that J does not look like he has anything different going on with him upon first meeting him, especially if people dont know about fragile x. His behavior at home can be horrid especially when he doesnt get his way. How am I or my parents suppose to know if this is because of his problems or just because he is 10 and not getting his way? Both boys have also had emotinal problems due to their living situation in the past and my not being able to be there for them so it is just hard to figure out what is what.

They decided to keep him in mainstream classes at school, with speech therapy from the school, and put him in rehab for occupational and physcial therapy. Both at school and at rehab people said he was well behaved and didnt show a lot of the things we had seen at home. Towards the end of the school year all of the sudden he started the same behaviors at school. My mother thinks this means he can control himself since he did for most of the year ...I think he didnt want to be "different" (he is aware of some of his differences but not all) but finally got comfortable enough there that he couldnt hide it anymore.

I am going to stop here since this is so long(and this is the short version lol)
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