mummycanhandleit Report post Posted April 3, 2011 Hi, I live in Northern Ireland, my son was born with his left lower limb missing just below the elbow due to an amniotic fluid band in pregnancy, When he was 3 and started nursery his teacher had concerns about his development and these concerns have grew larger by the month, now he is in P1 and we are still fighting with doctors and paediatricians about Autism. Everything has been a battle, trying to get a Statutory assessment, DLA, getting appointments, even to the point that no-one knew of a diagnostic clinic and I mean no-one, not the doctor, the teacher, senco etc. I went on the computer and eventually found a clinic that take parental referrals and are willing to diagnose my son- rather than be palmed off. I have had it!!!! How many other people are there in my area being palmed off with the same problems as me. No help out there for them what-so-ever. I want to start up a support group or something along them lines where I can share what I have learned and other people can share what they know and together we will maybe be able to get a full answer of how to help the children of our community. I don't know how to do this though. I would love in a year or 2 to have a place where people can come in to get advice, for possibly youth clubs, summer schemes etc for the kids to get together and to know they are not on their own, there is people just like them everywhere. Also, being able to socialise with each other would hopefully make such a big difference to all their lives. My community needs this but how do I start? How do I get this started and then how do I expand it to become a haven for these kids??? Please help. Quote Share this post Link to post Share on other sites
GaryS Report post Posted April 3, 2011 It seems a judge has recently agreed with you... I'd start looking at the local NAS and other organisations which you can google - there are usually lots of people locally when you start to look and only to willing to accept eager volunteers. Quote Share this post Link to post Share on other sites
spudulika Report post Posted July 25, 2011 mummycanhandleit where in N Ireland are you from? Im in Co. Atrim. My son is 10 and has just had a dx of Aspergers. He was refered to CAMH's and things went from there, once we got the first appointment with them then things moved quite quickly compared to some other stories I have been reading. I love your idea of a support group as I agree they seem to be non existent in N Ireland. Quote Share this post Link to post Share on other sites
AshleyT Report post Posted July 31, 2011 (edited) Hi, I live in Northern Ireland, my son was born with his left lower limb missing just below the elbow due to an amniotic fluid band in pregnancy, When he was 3 and started nursery his teacher had concerns about his development and these concerns have grew larger by the month, now he is in P1 and we are still fighting with doctors and paediatricians about Autism. Everything has been a battle, trying to get a Statutory assessment, DLA, getting appointments, even to the point that no-one knew of a diagnostic clinic and I mean no-one, not the doctor, the teacher, senco etc. I went on the computer and eventually found a clinic that take parental referrals and are willing to diagnose my son- rather than be palmed off. I have had it!!!! How many other people are there in my area being palmed off with the same problems as me. No help out there for them what-so-ever. I want to start up a support group or something along them lines where I can share what I have learned and other people can share what they know and together we will maybe be able to get a full answer of how to help the children of our community. I don't know how to do this though. I would love in a year or 2 to have a place where people can come in to get advice, for possibly youth clubs, summer schemes etc for the kids to get together and to know they are not on their own, there is people just like them everywhere. Also, being able to socialise with each other would hopefully make such a big difference to all their lives. My community needs this but how do I start? How do I get this started and then how do I expand it to become a haven for these kids??? Please help. They are about. I work for one in Harrow, London atm and it's a ###### amazing place!! The support is amazing, each kid has minimum 1-1 support. Parents also have a lot of support, help with tribunals, courses, etc. We take them out on days out to the zoo, and help them at playscheme and in the building etc. And i have to say, I absolutely love my job! Edited July 31, 2011 by AshleyT Quote Share this post Link to post Share on other sites
Lynden Report post Posted July 31, 2011 (edited) Ashley - where do you work? Curious if it's the same place as me ... Feel free to PM rather than post it on here if you want Lynne Edited July 31, 2011 by Lynden Quote Share this post Link to post Share on other sites
AshleyT Report post Posted August 1, 2011 (edited) Ashley - where do you work? Curious if it's the same place as me ... Feel free to PM rather than post it on here if you want Lynne Hey there =), KCA? Edited August 1, 2011 by AshleyT Quote Share this post Link to post Share on other sites
