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not getting any help

hadenough

For the last 10 years I have been trying to get help for my 12 year old son.  He has behavioural and learning problems.  He has slight right parietal cortex damage and a chromosome duplication. The brain damage wasn't found until he was 7, though he has had it since birth and the chromosome duplication was found out last year.  He shows signs of being on the autism spectrum and one of the educational psychologists he has seen thought he was on the spectrum too.  Yet despite this we can not get him assessed, I don't know where to turn to, any help?

  • Hi, my son has a duplication in his X chromosome and I'm looking to find other families with his disorder x

  • The school he is at are really helpful and are very supportive, so I'm sure they will be willing to help.

  • Thank you hopeful for you advice, the SEN teacher is really good and she has managed to get an educational psychologist to see him (it will be the fourth one he will have seen).  She is also going to see if they can get him statemented because they can only give him so much help without it.  I will phone her later and see what other help she can give.  Good news though saw the Geneticist yesterday and she said the X chromosome duplication he has got contains some crucial genes and she is willing to help, so hopefully things might get moving now.

  • I wonder if this is something school can help with?

  • Hi I also have been trying to get help for my son for the last 10 years and has only just recently had a diognosis.  From experience I would say that your first port of call would be your GP.  The only problem is you end up on a list and could be waiting for a while before you are seen.  I did some background investigation first to find out where and who gives these diagnosis' because there are normally a couple of centres that do slightly different things and you want to make sure your getting on the right list to begin with.  I found out from asking other parents, the SEN teacher and google searches.  You do need to be pushy to get what you need. All the best.