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what to do after diagnosis

i love kids and dogs

Hello i am just looking for guidance really, we have been back and forth to the doctors since our son was 2, he had speech therapy and always seemed diffrent to our other children, very unsettled and on edge most of the time, cutting a long list of problems short and getting to the point we have a few weeks ago had a DISCO appointment with the Pediatrician who asked lots of questions about our son and his time since he was born(he is 6 now) , we received a letter a few weeks later from the doctor saying diagnosis ASD refere to CAMHS (hope that is the correct spelling), so now what do i do iv gone to school and asked if my son needs a statement and as he has special help reading already and he is supposed to be on par with his maths they say he will not get statemented as the council is trying to phase it out and they have no concerns with him in other areas urgh, my whole time and appointments for this diagnosis was to get him extra help in school so he can be where he should be instead of dragging behind in class, he has not got the attention span to keep up in my opinion but school are making me feel like im fussing over nothing(well someone needs to be the slowest in class and it will be him if help isnt given) his efforts that he puts in is not reflected in his ability that he gets out of class.

anyway i am refered to CAHMS even though i have heard nothing other than this what should i be doing next, i feel funny about bringing benefits up as it as it was the school help i wanted and now im not going to get it i feel in a flap.

  • thanks iv found local parent partnership website and will make contact

  • Have a chat with your local Parent Partnership.  They are there to advise parents with children with additional needs and they HAVE to be impartial.  They should be able to tell you how and where to start and who to launch your campaign with.

    Our experience was different as my son was diagnosed at 2.5yrs - we had stacks of help at the beginning but I was really shocked at how much it tailed off when he joined school.  He is now 6 and in year 2.  Concerned that a lot of the professionals were fading away into the background I recently pushed for him to see an educational psychologist through the school (as the one that saw him for his statement was so great) but it was not a successful meeting at all.  Another one that'll be great if his funding is under threat, but a real heart-sinker.  She didn't tell us anything that we did not know already and it was a bit of a waste of time.  I fear that at your son's age it'll mainly be the SENCO and not much more on offer through school.  We have had some success with the council's autism outreach worker who our SENCO found to help solve issues at playtime.

    Really good luck with this all x

  • just to add, will he get frequent reviews by doctors or school or what does exactly happen , does it actually mean anything now a diognosis has been made?

  • ok so im going to push for a statement, can i do this directly with my council, as his school are saying they are not worried about him and not to bother?

  • Hi there - definately push for a Statement.  It is true that the councils try to save money - my son's Early Years Support worker told me he would be 'borderline' in terms of getting a statement but we insisted, badgered everyone until it was done and got plenty of hours.  He is now 6 and his current form teacher nearly choked when I told her about the 'borderline' comment.  If you are struggling, try to get him in front of an educational psychologist - of all the reports written that was definately the most powerful.  A harrowing read but mighty handy when you are trying to get funding.

    Refusing Statements is so short-sighted.  We parents are all fighting against the high levels of unemployment in adults with autism.  I argued that if they put the money in now, my son would pay everything back in income tax when his education pays off and he gets out into the world of work.

    Best of luck with this - keep badgering people - if you are turned down, appeal .... they'll give in before you do....!

  • I would push for a statement. If your son needs help, he needs help. They're probably fobbing you off due to financial stuff.

  • hi - the council is trying to fob you off and save money.  Statements are very important to get the educational provision your child needs.  Check out the nas site and the ipsea site for advice.  Many years ago my son was statemented.  It opened the door to a school for children with autism.  Without the statement he would have suffered.  Don't give up.