dx experiences

[ksasnic]

hi all,

its been a while since I've been on due to in the process of moving etc..

 

diagnosis how did it happen for you.. the reason I ask is that when Nick went for his diagnosis with the cahms lot we were ushered into a room where a speech and language lady (salt) was and the clinical psychologist (cp) was. the main man (cp) spoke briefly to nick asked his name then turned to me went through his notes of who we were address etc before Nick was asked to go with the salt.. exit Nick 5 -10 mins into appt. then the cp just banged off a load of questions did he walk on tippy toes when a baby what were his likes and dislikes etc.. I was only given a short time to wrack my brains to remember (lets face it with as kids the 24hours in a day seem more like 72 so remembering stuff nearly 9 years ago was more than a lifetime !) I kept trying to explain how it was with nick and to be honest I felt he didn't really care he had a list to go down and answers to be found preferably short answers etc. he kept looking at his watch, clock on the wall etc.. and then end of appt time was up bang on 3/4 hour... enter Nick who showed me a picture he had done.. exit hospital.. I was totally bewildered as to what had just happened.. was it me he was assessing ??? felt so disorientated and fed up didn't do my usual job of keeping nick in order till we got home so as we went round morrissons he became a monkey down every aisle talking in monkey language hitting out at the overhead notices, sliding up and down the aisles on his knees, running up to people and ooh oohing at them.. but i was just to tired to keep him on his leash so as to speak.. I just let him unwind..

 

following week a letter with an appt to discuss their findings.. I turn up at a different hospital finally get called in to what can only be described as a spanish inquisition 1 chair on one wall (for the condemned man ie me) and the consultant who first said oh yes Nick has as then the salt witch and the cp madman and then 3-4 cant quite remember other doctors whos position was ????.

 

then it came out Nick has a complex learning disability, speech and language problems.. but didn't have as - you could have hit me with a sledgehammer whilst i was sort of relieved on one hand i was totally in disbelief - the cp spent all of 5-10 mins with nick and he gave nick a diagnosis completely on his own imaginings..

i came out and cried bucket loads..

 

I need to know how others where dx what was the procedure ?

 

I feel as if Nick is being shelved due to funding.. was told by the school that the autism outreach lady was due in to see nick as part of his statement (and to get that statement it had to go through loads of people all who said yes nick certainly fulfilled the criteria for as..) cancelled the night before as he was now considered not to be as ???? ha promise 1 of the meeting that his support would continue taken away.. interestingly enough though told he had very complex speech and language, word finding problems and yet was discharged from the speech and language unit several months before ???

 

sorry I am now digressing.. please let me know how it was for you.

 

my boy can't read very well sometimes i wonder at all, short memory attention span ... ask him to get you blah and he heads of to get bla only to either come back with blor or shots back " what was it again ? " he cannot retain certain information like days of the week I ask him to say the days of the week starting with monday then we have saturday wednesday we seem to get every day bar tuesday and thursday in every order that could be imaginable.. instead of dates its how many days on fingers.. he sings the same line over and over and over again he will watch films over and over again and will quite happily say he has watched .... 17 times that day and the sad thing is hes right he has !! he won't tell you he's ill unless it is so obvious like he's passing out with a 40degree temperature.. he is very funny about his food just found out that he hasn't smelled anything for ages can't quite pin point when - maybe that would account for his food eating problems or at least a part of it... he keeps getting constipated.. he has meltdowns where he gets so upset or angry that he will refuse to walk with you or even talk to you - normally in shops.. certain shops are just too much for him... the lights and people... has to be constantly reminded to wash himself when in the bath, flush the chain, wash hands, clean teeth.. he never feels the cold even though its very very cold.. and he strips off his jumper.. I have had to take off his labels, certain clothes he hates next to his skin. no street or stranger danger sense despite rambling off that you don't talk to strangers or take sweets from them but this is parrot fashion as when you ask him why he just shrugs.. he's not interested... he doesn't twig why people get upset or even that they are upset... he prefers no clothes - we have compromised when at home he wears his boxers.. on car journeys he counts red cars, posts, signs, blue cars, white lorries then every vehicle even ambitiously counting 5 points for lorries that day or for the red cars when every other gets 1 point. he has an old squared mathsbook of his sisters and he writes the no.s in it starting from 1- its nearly full. He lines up his toy cars. the list goes on and on.

 

he is 9 years old with definate problems but no proper dx as yet. the old consultant has retired and nick is to see the new replacement one at school next week so hopefully i will get the chance to ask her some questions.. slightly worried though as when at school he is a different child very quiet.. helpful but his coping techniques at school are brilliant its what happens at home when he can unwind..

 

anyway sory for the long windedness of this posting just wondering what other people think and to their experiences of dx..

[sarahjane]

Hi

 

My experience of diagnosis with my 7 year oldwas sort of similar . We were seen together in clinic by the community paed who did some tests with H and spoke breifly with me, then me and his teacher were given a questionaire to fill in- v long and lots of questions from birth and some which did not relate to H as he wasn't old enough for example can he write his homework down etc. Then H was observed in school by community paed. Then we went again to a clinic and h was taken away by SALT and there was the community paed, ed psy and local out reach teacher for autism and diagnosis was discussed. After that there was a meeting in school with lots of people most of whom did not know H but were in someway involved.

It did feel abit like being fired questions at and I always felt a step behind! However it did not feel presurised and I had time to ask questions. I think you need to have a review appt to go over what was said and the diagnosis. The problem I have is that is well and good but nothing really has happened since then. It seems to have all ended and we are left up in the air a bit! I don't really know what to do if anything now. These people should also right a report and you could ask for a review to discuss this afterwards. i was given a draft copy of the report before it was sent out to see if I agreed with what was written and wanted anything changed.