Here are some suggested organisations that offer expert advice on SN.
GoodLuck Jay'sMum(42 Posts)
Just to wish u well tomorrow! Thinking of you!
Yes, good luck Jaysmum-I know just how you are feeling. DS5 has his assessment the day after (Thursday).
thank you sweetie......butterflys in the tummy!!!! Just spoken with the CP to fianalise directions to our house which is situated in the back of beyond.....had a very interesting chat with him about dxing Aspergers when there is a language delay....its so bloody confusing isnt it. Im sure that there are so many different ideas and schools of thought that even the professionals get a bit confused themselves!!!!!
This guy is good though and he was recommended by SBCohen and Lorna Wing.....so fingers crossed we may have some answers soon.
He is performing the DISCO and has said it is highly unlikely that any child who has a dx of SPD NOT to also be HFA or even Aspergers.
Must have an early night tonight.....dont want to be tired and fuzzy headed tomorrow. The assessment takes 5 hours!!!!!!
Still not 100% what to give him for lunch.....thought Jkt spuds, rocket and goats chese with olives and a balsamic dressing......followed by fresh fruit salad.....does that sound OK for a veggie?????
all the best and that lunch sounds brilliant - making me hungry ( breakfast time here )
Thanks everyone.....just know its going to be a long old night!!!!! The nerves must be setting in....Im CLEANING like mad!!!!!
Good luck - lunch sounds great, Mumsnet fingers crossed for you!
Didnt make it to bed!!!! What was the point in even trying....both hubby and I have spent the night pondering our thoughts!!!!
Why is it when we were fighting so hard for the assessment it was all we wanted.....now it is here we are both so jittery.
Just want today to be over and done with. So bloody emotional......going for a quick shower.....CP will be here at 8.30.....J still sleeping and I am not going to wake him.....let the day start as it normally does....J getting up at 9 and causing a whirlwind around the house for the first hour.......will post later how it goes.
Thinking of you Jayzmummy - the lunch sounds lovely by the way. Let us know how it goes.
Sorry, I'm late on this one (don't ask!). Any news yet?
Well he came.....J went into one as soon as he arrived.....poor little love just cant bear anyone unknown coming into our house. Obviously I was very aprehensive especially when J started to get the hoover out and proceeded to hoover the lounge carpet where CP was sitting!!!!!Finally dh prised hoover out of J's grasp and frog marched him off to the park with the CP and I started on the form filling in peace and quiet.
CP returned looking a tad dishevelled and we made a start on the early years.
Slightly difficult to give precise info about the preganacy and birth, beings as I wasnt present.....bloody social services are so bad at writing up important info about such important parts of a childs history. Managed to dig out as much info as I could and we got down to business.
broke for lunch at 1pm.....a much needed break from all the endless questions.....had a few good tears in the loo whilst dh showed CP around our garden. I felt such a crap Mom....there were so many early warning signs that I had missed....I was fool enough to believe what our HV had offered as explanations for J's bizzarre toddler behaviour. How I wished I had found this site back then...how I wished I hadnt been so bloody naive and gullable.
J refused to eat lunch with us....he will not eat infront of others at home because he uses his fingers to eat....dh made him a sarnie so he wouldnt have to worry about eating Jkt spuds with his fingers and so finally he agreed to join us at the table. CP had a good chat with J whilst we were eating....J didnt chat back....just grunted every now and then in response.
Round two stared at 2pm.....even more questions and finally at 4.45 we finished.
DH and CP have now gone off to the breach and i am getting supper prepared....CP leaving at about 7ish....
His summary so far.....J does not have Aspergers...as I suspected because of his language delay. J does not have HFA because he has a low IQ and specific learning difficulties. What he does suspect though, and I must admit I agree,J has Autism....just plain old Autism. He said not many children are dx with it nowadays....Paeds are preferring to use PDD or Aspergers,but in J's case he feels a dx of Autism would be the best and most acurate.
Im not sure how I feel.....sad because he explained it would be highly unlikely that J would lead an independent adult life and driving a car would be nigh on impossible for J.
Relieved that at last I know what we are dealing with.....birth father has a history of szchophrenia....so it had always niggled in the back of my mind, what if?????
Nothing has changed...but some how I just feel a lot calmer....like I knew I was right and that I am not the neurotic silly moo the paed had made me out to be.
Just have to wait now for the report to come in....then I'll be making an appointment to see the Paed to discuss with him the dx made by someone who knows what they are talking about.
So tired emotionally and mentally.....glass of red wine waiting for me on the kitchen work top...and I feel I need it tonight.
Thanks for all your kind words.
well I'm glad you feel calmer, I'm glad that's another thing ticked off your 'to do' list.
go get that red wine, and make it 2 or 3 glasses, TC xx
It sounds like it's been a heck of a day. Don't stop at just 1 glass of wine.
I don't think you can blame yourself for not knowing all this when J was younger. You trusted in the people who were supposed to know what they were doing. They didn't see it either. I too wish I'd found this site a lot sooner.
Now go and drink that wine!
Felt similar to u when leigh got his DX- even though i had been saying AS for months....to have it confirmed is still a shock.
Give J a special hug goodnight tonight and then try and sit back and relax in the knowledge that you have one less battle to face.
Sure- I know a label is only as good as the destination it points to- and i know you will still have fights to get what he needs- but the difference is now you can say with confidence 'why he struggles'...and not feel the need to offer several possible 'disorders' that present with his difficulties.....and ofcourse his strengths.
I wish i could make brilliant suggestions to you- but mine is the life of AS.... but there are many on here who will help.
I feel odd as having only just met you that i wish i could say more....but all i can think of right now is to say (Again) how i cannot get out of my mind J's gorgeous 'smiling eyes'.
Do you know them "smiling eyes" have just had me in tears.....think its just starting to hit home.....this aint ever gonna go away....but I am sure as hell not gonna let it be our prison.
Don't feel guilty. The first pro I saw when ds1 was 2 missed him completely- and he ended up with a dx of mild language delay (for a child who is still non verbal at 6). These things are subtle early on, and if experts miss it all the time......
OK he may not live an independent life. I'm 99% certain that my son won't. but something Charlotte Moore said in george and Sam was that she couldn't imagine her boys ever living independently - but that didn't mean they wouldn't- just that she couldn't imagine it. And i"ve found that a good way to think. Positive without being unreaslistic.
I know more children with autism than AS. - It is still dxed a lot- I know none with PDD.
Life will start to get easier now- it always does with a dx.
Sorry very bossy tonight.
I'd come up and see you (need somewhere to drive to)- but we went to the big beach near you recently (forgotton name aggh) and ds1 would only stay 5 mins and then he made us go home again! but if you fancy a meet up in the car park there I'll happily drive there on Friday (give me something to do- I'll only be driving round Dartmoor for 2 hours otherwise). And you're welcome to visit us anytime you want - very autism friendly house.
Thanks Jimjams....what a shame you didnt say you were coming up this way...saunton, woolacombe, croyde, putsborough???????
Im taking ds1 to bristol early on friday morning....will not be back till after 2 so it'll probably be to late in the day.....but some time soon.....please!!!!!
I am just so full of all that was discussed today....my head is spinning so much....dh is so quiet....think he is more shell shocked than I am. I feel for him because for the past few months I have been really doing my research and it has only just recently that I suspected J would not get a dx of Aspergers, and yet I knew he wouldnt get at dx of HFA because of his delay and low IQ.
CP was excellent....so nice to actually sit and listen to someone who really knew what he was talking about and more importantly he explained things in such a way that I totally understood every word.
Hubby is so upset because we played a game of frustration with J and the CP pointed out to my hubby that J didnt actually understand the concepts of the game.....hubby plays frustration with J most nights....thats their time. Hubby hadnt actually realised that J hadnt got a bloody clue what he was supposed to be doingSort of hits you quite hard doesnt it?????
yes it does hit you. I rememver bibic being the first place that actually assessed ds1's understanding- it came out at a 12-18 month level (he was almost 4) and I had no idea. I'd been trying to do SALT with him as well as we didn't have one!
none of those- widemouth bay! But woolacombe etc are as easy to get to. DS2 is back at nursery next week- but will have to do it sometime.
This bought a lump to my throat too JM. I know you must have a lot to think about at the moment, but as others have said - at least it is done now and you have an answer. It is hard to hear it in words even if you suspected it.
I would agree with Jimjams that I know alot more children with dx of autism than AS. In fact besides my immediate family, I don't know anyone else, and I think my ds may be the only one with dx of AS in our autism group.
Hope the wine is working it's magic. x
Its my wedding anniversary tomorrow....dh has just given me my pressie.....George and Sam.....going to start reading now......think Ive still got lots to learn.
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