ASPERGERS ASSESSMENT.

Replies

By EL

Re: ASPERGERS ASSESSMENT.
Thu 17 Jul 2008 11:07

No life will not change forever, no they should not leave you to it, and no Mark will not be any different and your love for him will increase(if thats possible) as you may get new found understanding and respect for him, i hope he will not feel like crap having said that my Adam does often say to me "why do i have to be Autistic and then punches himself in the head trying to get the Autism out someone on this site told me about a web site called aspergernauts where he can communicate with others his age who have aspergers. Is the appointment you have a multi agency appointment where all who have been involved with his assessment come together and agree on his diagnosis? if so i have to say that when we had this just over a year ago we felt relief that all the assessment appointments were coming to an end and we could breath again, Adam still sees his psych but once a month rather than every week or 2 weeks. Being 14 may actually help him understand better than had he been younger, but as you know it will take time for it to 'sink in' and he will have a lot of questions while getting used to the idea, having a label to me means "ah so thats why he does that" and reacts in that way. My hubby is 44, he has not been formally diagnosed with Aspergers but i suggested that he was to Adam's psychologist and psychiatrist who both agreed to observe him, they did and after just 5 visits both strongly agree that he was and had 'slipped through the net' he was told to self refere to Northampton hospital but he wouldn't due to his social anxiety, we both went to see our GP who had a letter in his files from Adam's CAMHS psych's backing us up but asked what we would do with a formal diagnosis? he said it would cost a lot of money to tell us what we already know I just wanted my hubby to understand that he wasn't a failure after all as his has always thought, even Adam's teachers have said they can see aspergers in him, but they dont need to tell me as i have lived with him for 21 years i know better than anyone. Your son will be fine just take each day as it comes and worry yourself about what may or may not happen you both have enough on your plate

By EL

Re: ASPERGERS ASSESSMENT.
Thu 17 Jul 2008 11:10

www.aspergernauts.co.uk

By coby6602

Re: ASPERGERS ASSESSMENT.
Thu 17 Jul 2008 20:52

Thankyou El for your kind words. As soon as aspergers was a definite maybe i read as much as i could and i changed the way I deal with Mark and his sometimes bad and sometimes odd behaviour and things have changed for the better already. I got a letter today and a couple of forms to fill in. A ccc2 form and a social and communication skills form. I included Mark and his sis and bro when filling it in so as it wouldn't be just my opinion and Mark sat there through it all not passing comment or getting peed off at us for talking about him. There was no expression from him at all as i sat there with tears rolling down my face and i finally faced the fact that this lad needs more help than i can give him. Marks dads doctor reckons he has adhd and 2 of his brothers are both suspected as being on asd spectrum. They said it can run in families and boys are more prone than girls. Thanks again El. xx

By getme

Re: ASPERGERS ASSESSMENT.
Fri 18 Jul 2008 00:06

Hi just thought that I should mention that it is a long and quite tiring experience for both you and your boy. We spent the best part of a day being assest in a whole bunch of different ways by a whole bunch of different people. Also be aware that it can be quite sad as you watch all the pieces fall into place even if you know for sure that your child is on the spectrum, i was not wuite ready for the range of emotions that i felt, I really thought I would just be relieved.
My son was also diagnosed with tourettes and that came completly out of the blue, I have since learned that this is quite common so dont be surprised if they thow another label into the mix.
We were given a large pack of information leaflets, booklets etc and refered to a number of further proffesionals for an assortment of other stuff, this was in Feb and we are still waiting so be prepared, this is not the end just the begining.
Take some munchies and drinks we got short as like you i got a cancelation but only had an hours notice and had to get my son from school, but hey ho thats life.
I hope all goes well come back and let us know how you get on.
Thinking about you both
Tracy

By EL

Re: ASPERGERS ASSESSMENT.
Fri 18 Jul 2008 07:43

Aw coby i know how sad you feel when i visit Adams school and see him "with his own" its as if i get smashed in the face with a sledge hammer i get a stark reminder of just how special he is and how much help he needs your son will learn so much from you without you even knowing it so dont think for one minute that 'he needs more help than you can give him' he may have seemed to be just sitting there "blank" but i bet you he was taking it all in if hes anything like Adam it could be weeks, months even before he will show any signs that he understood what was going on by way of wanting to know why you answered a particular question the way you did, Adam can leave me 'floored' time after time with his level of 'hidden' knowledge and understanding trust me your son knows more than you think he does and he will only use his knowledge when he needs to your right about the genetic link, my Adam, hubby,father inlaw,and sister inlaw are like clones of each other when they are all together its like a scene from the body snatchers lol i know what you mean about the crying bit at times something will come up that makes Adam realise he is 'different' this does upset him which absolutely breaks my heart i have cried thousands of times just for watching him and his facial expressions no doubt we will both cry thousands more

By EL

Re: ASPERGERS ASSESSMENT.
Fri 18 Jul 2008 08:10

getme, when i was first told that Adam may have Aspergers i thought what the bloody ell is that? i went to the library and read EVERY single book thay had on the subject i went through the range of emotions you speak of from denial to bereavment, i cried for weeks and weeks i wrote dossier after dossier on him so i could see the triggers/reactions he has which enabled me to put myself in his shoes and really get to know him one of the biggest shocks was realising that his future was going to be very different to the one that all parents plan for there kids by the time he got his written diagnosis 3 years later i had already accepted that he was aspergers and also realised his dad was too so i felt relief that Adam was diagnosed but dispare that i was now dealing with not just my son but also my husband who have aspergers i always knew my husband was 'different' and thought he was one in a million but now i know hes one in five hundred!!! i do get angry with my hubby and we have had some pretty rough times and at those times i could kill him but i love him and wouldn't want to swap him for anyone else, we are a organised chaos disfunctional family but we are a unit and will be together for ever i get where you say watching all the pieces fall into place, its hard hearing the opinions of so many different medical people when its your child they are talking about but at the same time i was pleased that they had picked up on so many aspects of Adam, its as if they know him almost as much as i do which will only prove to help him further in the future