rainbow queen Report post Posted March 3, 2006 letter came this morning with appointment-i recenltly complained about the ot report-so im thinking this has been rushed through as im causing more of a scene. it says for me to go on my own. im very worried-as i feel this is my last hope of getting any kind of dx-i will really be gutted if i dont get a dx from this[for my son] any advice on this ??? Quote Share this post Link to post Share on other sites
tmf Report post Posted March 3, 2006 Hi, Can't help i'm affraid, carry on looking, pretty sure someone will be along soon to offer some valuable advice! Quote Share this post Link to post Share on other sites
rainbow queen Report post Posted March 3, 2006 when i say i will be gutted if i get no dx for my son -it sounds wrong,what i am meaning after all this length of time struggling with him and the probs he has-i am so hoping that someone else will also see what ive been saying-as i feel let down by the others. i have now accepted the way he is -i just want it clarified on paper,as i am giving up after this-if this fails then im not going pursue it anymore cause its like talking to brick walls and im wasting my time . Quote Share this post Link to post Share on other sites
cmuir Report post Posted March 3, 2006 Hi I'm in exactly the same position as you. I have a 4 year old son who is currently undergoing lots of assessments by lots of so-called specialists. Frankly, we're being passed from pillar to post. I'm getting really fed up with it all, not to mention stressed out. We're currently awaiting an emergency referral to CAHMS and have been waiting 2 months so far! Again, I'm start to feel like you and wonder if it's worth it. Have to say, only thing that keeps me going is that I know there are services which can be accessed, but only after being given a diagnosis. I really feel my son is being short-changed and that's what's been giving me the motivation to keep seeking a diagnosis. I think pester-power can work wonders. Good luck with the appointment (would love to know if it goes) and don't stop 'til you get that diagnosis! Might be one step forward and two back, but you'll get there (and so will I ? I hope?!). Caroline. Quote Share this post Link to post Share on other sites
JenRose Report post Posted March 4, 2006 hello, my son M who is 9 has been seen by CAMHS and they refuse to dx him as AS/HFA/ASD they use the term "complex needs with Autistic Traits" which is so so annoying. We are waiting for the psychologist to finish her therapy with M and then we are going to either go private with someone recommended by the NAS or ask for a 2nd opinion. Hope you get what you are hoping for, but if you dont keep going. Quote Share this post Link to post Share on other sites
LindaB Report post Posted March 5, 2006 When we first got our appointment at CAMHS we just saw a nurse practioner. I really did have to push it to see the pyschiatrist. It was at least a 6 month wait to see her (and that was with the paeditrician intervening because DD was depressed (she also suffers from chronic fatigue - long story). Once I managed to see the pyschiatrist she has been absolutely brilliant. We have had to fill in various assessment forms and DD has been observed by a psychologist and finally I had to attend what they call a 3Di assessment on my own which took about 8 hours in total (over 3 sessions). We now have a provisional diagnosis (of all the things we suspected plus a few other things) which she is at the moment fine tuning. Her only wish was that she had seen us much sooner as DD is now 14 and has had problems for so long that no one would take on board. If I had not been persistent at those initial interviews we would have been no better off. So keep at it. Quote Share this post Link to post Share on other sites
rainbow queen Report post Posted March 6, 2006 thank you for the replys. i am starting to feel really uptight and worried about this appointment im going take all my lists and letters but im not very good at talking and i make things look better than things are-think this is where ive been going wrong plus it dont help that my son acts completely different in school so im worried this will go agaisnt me i got a book the other day called: ASPERGERS SYNDROME a guide for parents and professionals by tony attwood alot of the way he words things are just like what i want to say ect....do u think it is or isnt good idea to take this along and underline the points that my son dose?? i was in tears reading some of itbecause alot of it fits my son and he puts it so much better than i can explain-when i say things it comes out sounding that its not much,ie when i explain things to school-they keep passing me off saying yes all kids do that i was never like my son is as a child-my parents have told me that they have never seen anything like it, except my sis whos grown up son has now been dx with it and other things,but when he was alot younger my mum and dad didnt see half of what was really going on with my nephew it was kept quiet. dont know if anyone has this book but the bit on page 39 about child coming home from school fits my son perfect[amongst all other stuff]its worded so well saying about the pressure to conform leads to enormous emotional tension which like a compressed spring is released when child reachs home[mine the car ] almost jekyll and hyde. any advice?? about the book question much gratefull Quote Share this post Link to post Share on other sites
phasmid Report post Posted March 6, 2006 You could take it along or you could make a list of things from it to show them if you think that might be easier to do. I had this book once upon a time (it got lent out and has since vanished) but I knew what I was about to read in your post regarding meltdowns after school before I read it! Quote Share this post Link to post Share on other sites
