hi, my daughter has recently recieved a diagnosis of fragile x syndrome and i would very much like to meet / hear from any local families to find out abit more about what we are up for.

Hi, I'm not from your area but i have 2 sons with fragile x so if you want to know anything i will try and help.

(07-10-2010 08:01 PM)nicky Wrote:  Hi, I'm not from your area but i have 2 sons with fragile x so if you want to know anything i will try and help.

hi. thanks. to be honest i just feel abit lost. my gp told me about 3 weeks ago and that was that! ive contacted the fragile x society and they were helpful in giving me leaflets and a quite frightning dvd! im just worried about what to expect and that this early intervention doesnt really seem to be happening very early. i expect i wont get any early intervention until she goes to school, am i right in assuming this?

Hi, I know the feeling about the dvd!, the early intervention we've had is a lady who comes from inclusion support round to play with our youngest he's 2yrs every other week, this is to see how his develpmental skills are and try to give us ideas on how to improve them if they are not up to his age, also we've just see the speech and language that's took since sept last year I think because they are so over worked in our area many are on maternity leave so they only have a few at the moment, they have suggested to try pictures and makaton to help him with his frustration at not being able to speak yet. We have been doing the makaton with him anyway and he can do a couple. Don't be put off by a lot of things you read as every child with fragile x are differnt, my eldest son has bad behaviour problems but my sisters 2 boys who have it don't, they all seem better or worse in different area's.
You ask your Health visitor for a referal for inclusion support if you are worried although we've been told we might not get it from Sept because of the budget cuts they are only going to give this help to the children with severe problems so I don't now what's going to happen till then. Just be very strong and keep asking for the help you think your daughter needs otherwise they won't give it to you if you don't shout loud enough!
How old is your daughter? and can she speak ok? If you want to know anything I will help if I can.

(07-11-2010 09:18 AM)nicky Wrote:  Hi, I know the feeling about the dvd!, the early intervention we've had is a lady who comes from inclusion support round to play with our youngest he's 2yrs every other week, this is to see how his develpmental skills are and try to give us ideas on how to improve them if they are not up to his age, also we've just see the speech and language that's took since sept last year I think because they are so over worked in our area many are on maternity leave so they only have a few at the moment, they have suggested to try pictures and makaton to help him with his frustration at not being able to speak yet. We have been doing the makaton with him anyway and he can do a couple. Don't be put off by a lot of things you read as every child with fragile x are differnt, my eldest son has bad behaviour problems but my sisters 2 boys who have it don't, they all seem better or worse in different area's.
You ask your Health visitor for a referal for inclusion support if you are worried although we've been told we might not get it from Sept because of the budget cuts they are only going to give this help to the children with severe problems so I don't now what's going to happen till then. Just be very strong and keep asking for the help you think your daughter needs otherwise they won't give it to you if you don't shout loud enough!
How old is your daughter? and can she speak ok? If you want to know anything I will help if I can.

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(07-18-2010 06:20 PM)fragile x Wrote:  

(07-11-2010 09:18 AM)nicky Wrote:  Hi, I know the feeling about the dvd!, the early intervention we've had is a lady who comes from inclusion support round to play with our youngest he's 2yrs every other week, this is to see how his develpmental skills are and try to give us ideas on how to improve them if they are not up to his age, also we've just see the speech and language that's took since sept last year I think because they are so over worked in our area many are on maternity leave so they only have a few at the moment, they have suggested to try pictures and makaton to help him with his frustration at not being able to speak yet. We have been doing the makaton with him anyway and he can do a couple. Don't be put off by a lot of things you read as every child with fragile x are differnt, my eldest son has bad behaviour problems but my sisters 2 boys who have it don't, they all seem better or worse in different area's.
You ask your Health visitor for a referal for inclusion support if you are worried although we've been told we might not get it from Sept because of the budget cuts they are only going to give this help to the children with severe problems so I don't now what's going to happen till then. Just be very strong and keep asking for the help you think your daughter needs otherwise they won't give it to you if you don't shout loud enough!
How old is your daughter? and can she speak ok? If you want to know anything I will help if I can.

hello again, my little one is 13 months. she is really delayed in all areas and only seeing a phiso at the moment who is abit slow off the mark. im on the waiting list for portage, speech and language and ot.... she is happy but like a baby of 5 months, only just started to roll. my older girl is 8 and has a diagnosis of autism is being tested for fragile x too but functions alot higher than her sister. i think lola (my youngest) will need pecs possibly, cant believe how behind she is. i know that fragile x is a spectrum similar to asd but think she is on the severe end. are your boys mainstream or special school? how did they go with meeting their milestones? are there any groups in your area where you meet up with families with fragile X? claire
(This post was last modified: 07-18-2010 06:26 PM by fragile x.)