#6
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Hi, luckily both of mine reached their milestones roughly on time apart from talking, but my sisters boy's did'nt they was about 1yr old when they could sit up, but on the downside my eldest who was in mainstream and only had 1yr to go has been suspended twice now for being violent and aggressive with the most terrible language I've heard. We had to take him out of school and are now trying to get him into a special school for children with autism as he seems to definatley have the traits and obsessions. The pead and speech & language can't seem to make up their mind whether he has this aswell or not. Bay has just started mainstream playgroup which gives us a bit of respite for a couple of mornings a week, the staff are fantasic can't do enough for him, to be honest school was up until the last 3wks and now they can't cope with him any longer. Is your eldest in mainstream? does she get anxious and frustrated? I'm glad Lola's s happy baby, Bay was so much hard work he used to cry and scream constantly up until about 6mths ago, he still does it but not quite so much. When he screams everyone around us puts theirs hands on their ears and moans as it's so loud. It takes them so long to sort out things like speech & lang etc it get's really frustrating. I sometimes go to a group for autism but there's no groups for fragile x, there is a good website called my fragile x community it's in America, the people on there are very friendly and will answer any questions you have aswell.x
#7
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Hi girls, Just stumbled across this while searching the net for info and to be honest, I haven't found anyone else much in a similar boat! My name is Sam and my little boy Daniel who is 4 in January was diagnosed with Fragile X in October this year. We live in Plymouth and as with you guys there doesn't seem to be much about in the way of support or any groups at all apart from the main website. I am in the process of thinking about what to do regarding Daniel's schooling. I always just assumed he would go to mainstream school but at his recent review this week the Ed Psych has mentioned getting information on specialist schools in the area, of which there don't seem to be many!! Just wondered if either of you have any knowledge of fragile x and mainstream schooling? I read that Fragile x children are best kept in mainstream for as long as possible but I wonder how realistic this is and how much Daniel will be able to be involved with once he's there - decisions decisions!! I also have a little girl Emily who is 1 next week and as of yet doesn't seem to be effected at all by anything (it's like one extreme to the other in this house as she's been walking from 9 months and Daniel was 22 months!!) and I am having another baby in April. This was a surprise and has given us lots of concern since we got Daniel's diagnosis in October! However, what will be will be, and it's another little girl!! x


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