Aspergers? Any advice appreciated. #Update post 37#

[hibbie]

Bear and Buzz...it really sounds like we are going along the same route at the moment.

I can't believe that we have already had our Paediatrian appointment through...it came today...its on the 15th of December so exactly 5 weeks from mys son phoning me and raising her concerns on the phone... really can't complain about that...was expecting a much longer wait! Our Tac meeting is on Monday so we'll see what happens then.

[bearandbuzz]

That's really good 😀, I've not heard anything yet, but have been warned of the long wait. I'm off to the dr myself in a mo so will just double check the referral letter has been sent.
Keep me posted x

[hibbie]

Well, we had our paediatrician appointment this morning. OMG we were questioned about everything from my pregnancy and whether it wa splanned and to what formula until what stage etc etcwe used. Lots of questions were quite confusing and we kept asking for things to be clarifed! We were also asked why we didn't have his little red book with us (He's nearly 7!)...it's got very little info in at as we rarely saw our Health Visitor and I have never ever needed it before, infact the last time I got it out I was poo pooed and it was thrown to the side! Thankfully on the development from I was able to relate each thing back to what he could do on a particular holiday and if it was long before/after he could do this (even though we had twins we had 4 holidays by 19 months as it was easier being away from home! ).
Anyway after going through everything he did ask me if anyone has ever mentioned ASD/aspergers before and he did pick up on the fact my son had "fleeting" eye contact, didn't really play/engage with the toys there today (TBH they were a bit young and didn't have any train/cars/aeroplanes which is all he plays with!).

HE is refering him to the standard speech and language therapies, however they may not accept the refferal as with him it is not about standard language problems it is general communication/social skills (which they may say needs to go to the child with disabilities Speech and language team through Camhs) which we may not get reffered to , that depends what the school says in their report if standard SALT do not accept him.

Although previously the school have said there is no problem here his class teacher advised last week that he doesn't mix unless he is told to and doesn't have any friends so they are now looking into this further and have an ed phsych doing classroom observation on him at 9.30 on Monday (although he is fairly "normal" at this time as it is too early in the day/week for his problems to build up! )...we are attacking everything from all areas! My worry is that if he is assesed at playtime it will all look ok as he currently follows his twin sister about and attempts to join in with her friends(or so she says! )
The paediatrician will then decide whether to do genetic/blood tests for any other problems depending what the school/SALT send back... final outcome would be to refer to CAHMS if they felt after this it needed to go that far!
Spoke to the principal teacher today who is in charge of his care and explained how important it is to get the correct information into the report not just what a random person working in the school who is keeping an eye on hime thinks!

Dissapointingly OT have just discharged him as they feel they have covered everything and provied enough for him...this was 10 mins after he stood and licked a random dog in the street!... I've just to have back up ideas up my sleeve for times like this and this is normal for children who have sensory issues!

Anyway sorry for the long post but OP i hope this may help you with what to expect when you finally get your appointment...I thought I was well prepared with notes and a couple of videos but maybe should have though more about the initial developmental (right back to feeding options and problems in pregnancy) as well!

OP I hope you have recieved your paed appoint through now.

[bearandbuzz]

My goodness, what a palavar!
I too wouldnt have thought the red book was necessary.
Funnily enough we received the questionairre earlier this week, we've posted it back so will need to wait until after christmas to see what is next.
We had an incident at school today where it was too noisy for him at the chrismas party and he had a melt down. Its strange because i feel its the first time people have dealt with him with some kind of understanding, he was mived into a quieter room with some other children. Even though we havent got a diagnosis im happy that certain behaviours arent being dismissed as being naughty, whereas previoisly they would have been.
Thank you for the info about the paediatrician, im not sure how far it will go and how seriously we will be taken, but as time is going on im definately pleased we have started in that route. He has just under two years until senior school and to be honest im a little worried as to how he'll cope.

I hope you get somewhere with your referral - an observation would be great, although the time of day isnt good. Its probably one of the few times you want him to 'stick out'!

Good luck

[Mallky555]

My DS is 10 and was diagnosed with ADHD and Asperger's 6 months ago.
What you describe sounds similar to my DS my boy is a routine junkie does same thing day out very high functioning and very bright he will exhaust his teacher about set topics at school and takes ages to settle when the class move onto next topic .
He is now medicated for the ADHD and says he feels better when he has it he describes his mind as racing and too much stuff in his brain to keep in so has to get it out and he can't wait so lots of chatter and very loud he doesn't have an indoor voice as we call it 🙈 Very loving young man but very draining at the same time he's learning more about what is wrong with him and says he feels better knowing there are reasons behind why he does things and his reactions to situations we are currently in Florida and he happily dances down city walk whilst people stare at him haha he's very quirky in that sense xx
We went through the gp after getting nowhere with the school nurse we were referred to camhs he sees a specialist nurse once every 3 months now.

Apologies for grammar I'm on my phone

[hibbie]

..have just come on here to vent really and I suppose update things.

Why is everything just so hard to work around?...we have recieved our next paediatrician appointment to get an update on the findings of speech and language appointment and the report from the school!

2 problems...when I asked at the school they have had no request for a report and secondly we have had no appointment through from speech and lanuage! I have spent since Thursday afternoon chasing, phoning and leaving messages, trying to actually speak to the right person in each department!...I finally got everything tied up today...I feel drained with it all!
SALT are (as expected by the paediatrician) not accepting the referral as they feel it is more of a diagnosis that is required and general SALT will not do this...they have recommended to be passed to SALT at CAMHS. Paediatrician previously advised that CAHMS will only accept refferal if report from school advises of non verbal communication and social problems (if genearal SALT would not accept us!). Have now asked for request for the report to get re-sent to the school and school are looking out for this. I don't think they are on the same page as me though...they are not seeing/admitting the same problems as me... i think because they are totally understaffed at the moment...I only want to truth not fobbed if they don't have time to observe him. Although they have advised that depending on the outcome of what the ed psych obsereved they may be able to referal to CAHMS... Just feel like I am going around in circles chasing my tail!

[bearandbuzz]

It's a very frustrating situation to be in, if only I had some advice - but your journey is further down the line than mine I'm afraid. I guess it's just a case of keeping on at everyone - if nothing else it means that they'll get so sick of hearing from you that it may push things along?

From my side' I know the school have had the questionnaire, but I'm not sure if it's been filled in yet.

Like you, I'm not sure if they'll see the same as I do. Maybe because I've been looking out for it, or maybe because of his age, but I'm seeing more and more traits as the weeks go by. I'm still not sure what help anyone can be, but have made it my mission to get something on paper so that when he moves school in 2018 he should have more support to help him through the tricky times.

I hope it gets sorted for you, keep me posted. X

[bearandbuzz]

Oh my goodness, how strange. I've literally gone to the front door to pick up the post and have a letter for an appointment with the paediatrician in a couple of weeks! That's just freaky!

[hibbie]

Originally Posted by bearandbuzz

Oh my goodness, how strange. I've literally gone to the front door to pick up the post and have a letter for an appointment with the paediatrician in a couple of weeks! That's just freaky!

See more...

Oh that's freaky but also great news!...when is your appointment? Our next one is the 9th of March...just need to chase the school up tomorrow to make sure they have recieved a request for a report for him (and that it's on course to be completed and returned before the apointment). And then I just need to prepare myself mentally for seeing the paediatrician again. It was really draining the last time and he was so arrogant at first!.

We have had an awful week this week with lots of tantrums, crying, agression and lots and lots of licking and chewing. He was distraught yesterday after school and really wasn't making sense, screaming, pointing and shouting. With some gentle persuassion today (he was still blaming his teacher on various things after school today! ) it appears that they were to work within a group on a task and he obviously found this tough! It's so hard as like many he holds it all together at school but it all comes out at home!

In a way I just want this next appointment to see if they are going to take anything further and if so, what the next steps will be. Also actually dreading the possibilty of being told he is just a normal nearly 7 year old as my instinct tells me differently and I really wouldn't know what to do next!

[bearandbuzz]

Hi, sorry for the delay in replying.
We had the appointment on Monday, I went with the SENCO, which was quite handy as the team hadn't received the questionnaire - even though the SENCO remembered the date which it was posted! They also didn't have my questionnaire to hand, but didn't seem too worried.
I've mixed feelings after the meeting, it was both positive and negative in a way. It was positive in that she said he definitely had many traits of ASD, but then followed that with the lack of funding would be a problem as he is highly functioning and intelligent. I can see the point - he isn't suffering with his education as such, but socially I do worry about him.
On the other hand she did say she would take his case to the team meeting and if it was agreed they would look to observing him, however the appointments are few and far between and we could be looking to up to a years wait!
I've come away with a weird feeling, I hated having to pick apart all his little quirks, especially as he was sitting right there (incidentally, he just tuned out the whole time and read his book!), but I know I do want something to come fen this so he gets support when he transitions to secondary school in 18 months. I have prepared myself that they won't take it any further, she did say that if his symptoms change then it could be worth reassessment (which is another reason why I think it won't go any further).
The plus side is that the school are very much on board. They have concerns about transition too so I'm hoping we can work as a team with whichever new school he goes to, which would be a big help. Ultimately I just want him to be understood, I know people look at him and see him as odd or that he's deliberately dong things, but they don't know my wonderful son and that he really and truest cant help it.
Oh how frustrating the whole thIng is!
I hope your next appointment goes well tomorrow x