Had that first Paeds. meeting in Harrogate.

[jemmm]

Hi everyone,

I posted last week about our first paeds. meeting in Harrogate, and about my reservations about the Consultant.

Have to be honest - that was as good an outcome as I could have expected... in the circumstances.

There an hour and a half, gave Ds a thorough going over, took a detailed history - we took in a two page summary, that laid out his history, and detailed what we were concerned about - I think this really helped - he seemed grateful. I hate coming out of these things thinking - oh, I didn't mention... And it means he has the facts as we see them in fron of him.

That said I think the fact that the Paed, tried to play with Ds, and Ds threw the toys at him, helped set the direction of the meeting....

He's set in motion the assesment procedure, and set a meeting with him in 4 months time to discuss the dx - i.e. it will have been made by then.

That said he told us pretty straight that he he would be "very suprised" if it wasn't autism, and when I pushed for some idea of where he was on the spectrum, he said I think we're looking at a case of "classic autism".

So in one sense - clearly not the outcome that we were looking for, in another sense - I can't fault him - he asked about us as a family, asked about the interventions we had so far, and said that we would have an early years teacher involved in the assesment.

All the things I thought I might have to fight for in this stage, have been provided.

Don't get me wrong - I know there will be battles in the future, and I also appreciate that the paed's manner might not be everybodys cup of tea... but so far, the speech therapist has been great, I feel like we're making little steps forward, the paed has been great, the dx process is underway.... everyone move to Harrogate! No don't, it's full of blue rinse and nobody has a garden.

Juliaw - thanks for all the resource stuff. We were astonished last week at Ds's response to swimming - so up for the hydro. And when I mentioned this to the SaLT, she mentioned horse riding and autism, so I'm going to look into that too.

Ok - onwards! Today paediatrics, tomorrow social services. Just watch all this unbounded positivity wither away....

Thanks again everyone,

Jemmm

whilst on the one hand it's positive that the paed took your concerns seriously, and was honest about the likely DX - on the other hand it must still be crushing to have your fears concerned, so allow yourself a little TLC (wine/chocolate/whatever floats the boat) over the weekend once you've got all the meetings out of the way.

Glad the paediatrician is going to help get matters in motion.

just want to say i hope you get all the help needed now you know where you are

it is hard to start with it can be roller coaster with emotions but once it all settles you become just determined to do all you can

ds has ASD he did music therapy which took a while for him to get into but when he did he loved it we booked 2 courses on that

not sure if you go sn group they do trampolining and music therapies etc

ds has trampoline in his room helps him unwind

horse riding again as its the gentle rocking back and forth we have small rocking chair at ds computer his only 4 lol trouble is both legs at the back are bruised from the rocking

we have lots of help from early years team were just setting up support around the child it can be hard at times lots of people lots of appts but make sure you take some you time to unwind from it all

big hugs xx

how old is your ds? my ds was dx with HFA but my friends ds was given no formal ASD dx and another friend was classic autism and when her ds got older he was dx with HFA as he had progressed and changed so much from original dx

ds was assessed after 9 mths should have been 6 but was left with original dx children progress so fast and when young quite often just need to be dx as on the spectrum to receive all the help needed etc and then if possible will have formal dx when reviewed again

i should say he was re assessed after 9 mths he was dx at 3

Thanks everyone.

bubblagirl - want to know more about all of that - can we do that tomorrow, as I'm afraid we've already taken the advice of totalchaos, and bought two bottles of champagne and booked the chinese food.

Somebody once wrote something about meeting victory and defeat in the same way - Kipling I think... I'll be honest, I always thought it was bullshit - but hey champagne and a takeaway I'm not arguing! We're not being glib, there's a part of us is that is devastated - but hey, we'll deal with that and the hangover tomorrow.

im off to bed anyway leave you with hangover although enjoy

I'll check in with you tomorrow just ask away what you want to know when i get spare 5 mins I'll reply to you xx

bubblagirl - excuse potential deterioration in spelling... ;-)

Ds is 22 months - I know what you are saying about progress and age - and indeed, the paed. pointed out "Classic", BUT he's still pre-school and things can change... and, since we've had intervention from SaLT and we've been doing the "right things", we've definitely seen progress, so... positive thinking!

Can I just tell you all about the guy in the supermarket, poor man - he's the "one", who always asks "can you prove that you're over 25", when you buy beer... comedy tie type - so I buy two bottles of champagne, and he asks the usual question, then he asks if I'm celebrating.... I thought I was quite restrained, when I just said "no", I'm not sure my wife thought the same...

Jemmm

sounds like your DS has got a good team behind him, starting with you two.

congrats, not sure whether thats the right term or not, but with champagne, well...

as lingle writes, sounds like he has a good team behind him.

as i've mentioned in earlier posts my ds has progressed so much in the last year, my sis dx him at 14m and we were thinking more classic, but he is moving up the spectrum, and is, as he tells me, the best boy in the world.

must admit could not live without a garden, where do you put the trampoline..

cheers x

i have small trampoline in bubbla boys bedroom he can bounce away when he needs to he tends to like the rocking chair more as his poor bruised legs will tell you

and spinning he loves to spin round and round till very dizzy

at home his obsessions are lessening but his need for routine is proving a necessity

we used to use now and next with picture cards but now his able to communicate better he's happy with

number 1 pre school
number 2 shops and so on
and we have to go through it several times and he'll count it down as we do it

really sounds fab the amount of help and input so far ds was non verbal at 2 didnt get any hep with SALT until gone 3 was at pre school from 2.6 but didnt get 1-1 until 3.6 but luckily has progressed great but would have probably progressed quicker with earlier intervention so your ds has the upper hand

and of course with 2 loving parents who will help every step of the way

hope your head is ok jemmm lol

ewww... so the champagne and Chinese wasn't perhaps the best idea in hindsight, darling ds woke at 12.30, and has had around 3/4's of an hours sleep since!

Still - my wife is looking after the twins today, and any work I have to do can wait until the weekend, so we're going out for the afternoon.

bubbla/jasdox - thanks for the encouragement on the dx - we know he's making progress already and we know we can make a difference. So it's a case of "onwards" really. bubbla, I tihnk I read elsewhere that you said "it's about making the best possible life for them" - and I think you're right - it's the same with any child, we're just starting from a different place with asd.

Anyway.... I have SS coming next week sometime, and I believe the paed said an OT appt. would be made, so the music therapy would come from there would it? He does love music, so I'm keen to encourage that. What did you mean by "sn group"?

The rocking... I didn't realise that was the appeal of horse riding. At the minute his favourite song is "Row, row, row the boat". We sit on the kitchen floor rocking backwards and forwards. We do have a childs rocking chair, so I must try that.

He's not as steady as he might be though - everyone talks about trampolines - I worry me may catapult himself half way down the street... That said, I think he'd just pick himself up chortle a little and get on with it if he did

Jemmm

the trampoline i have for ds has handles on the front so he can hold on and jump

sn group special needs group we have one called SNAP in our area and get parenting courses , as well as children getting different therapies

if genuinely doesn't sleep well with settling to sleep ds has just been given melatonin which is natural hormone that they believe ASD children lack and its been a god send but if ds settles well then it wont be of use ds couldn't settle to sleep till really late and was surviving on next to no sleep which affected his ability to handle the world

well i hope you all get some well earned rest

Hi Jemmm,

Glad you had a productive appt with the consultant, his manner is definately you either like it or hate it, I quite like him, my DP doesn't lol.
You will get appts with the following people now:
Occupational therapist (at CDC)
development assessments (1, maybe 2 at CDC, video'd)
Educational psych (home)
Early years teacher to make transition into nursery/school easier and make sure he has everything he needs.
My DS has just been handed over from early years to an Autism Outreach team, so not sure when they will apply to you.

As for SN groups, there is one at winkies on a monday, you get a member card and discount- I got mine from the carers resource when they helped me fill in my DLA forms.

Also the children's centre on Wetherby Road, They do things like music therapy, portage etc.

Like Bubbla, our definate Dx has been delayed until October (we had our multi - dis meeting in Jan), although he did say that some cases are clear cut and others need more time to 'pan out' so I guess we are just 'panning out' atm, I don't really know if that is a good thing or a bad thing tbh, but that's a whole other thread!

Be kind to yourselves this weekend, and over the next 4 mths, I wrongly felt like I was 'on trial' for all the meetings, I felt very protective, and felt like they were judging him, and us as a family, which is stupid I know. (I got major rollockings of the DP for it). It can be quite stressful- when it was all over we went to center parcs for the weekend just to celebrate getting through the process!

Glad to hear things are moving for you. As I said we're not having the video assessments, just the ed psych at home. Also not expecting any of the other stuff (other than SALT) to kick in until we have our diagnosis appointment at CDC in July. Sorry to be an idiot but what do they mean by "classic autism"? Mild, moderate, severe I get but what does "classic" mean? Oh and we do have a garden - no trampoline yet - but being Harrogate had to sacrifice a bedroom for a garden so my older two are stuck with bunkbeds!

ok ignore that I just looked it up! I'm surprised they were so specific especially as he's so young. I guess I need to prepare myself for more information than I was expecting

Hi everyone,

Bubbla: The problem hasn't been settling quite so much as waking through the night and not going back to sleep at all. The paed. gave us melatonin, said we could give it a shot if we wanted, but warned us it may not work - he went down fine, but woke in the middle of the night and didn't settle again - this was of course the night of Champagne and Chinese - cheers, kidderoo!

Still, paed also gave us some Vallergan Forte - a more traditional sedative - this we used last night, we were at our wits end sleep wise, and I had all three dcs all day, as wife was in Hull - neither of us could afford to be up for three or four hours in the middle of the night, and we'd had at that point I think five nights out of six totally written off!

As much as it worked, Ds has been a bit hit and miss today - that said, he can be like that other days for no apparent reason.

Has anyone every used melatonin in the middle of the night - i.e. to try and get them back off to sleep? I may post that question to the board more generally, rather than just witter about it here...

Novacane: one of the problems was the room - intitial consultation in standard outpatients for children... it was really hot - and it's one of the things that can really set Ds off. Afer he'd examined him, I left his top layer off for a little while so that he could just cool down a bit. But yeah, I know what you mean - he's not got the most child friendly manner in the world - that said, to an extent, I'm not sure he needs to have?! If you see what I mean.

Just realised who he reminds me of - been bugging me since the appt. - Lembit Öpik! So now the rest of you can see quite how un-child friendly his manner has to be - imagine, been an ASD child and having him trying to stick something in your ears - I'd be out of there like a shot too...

Anyway... Juliaw; We do have a bit of a garden; it's just not huge and it's not brilliant - we both work from home, so we need the extra bedroom/office - funnily enough was talking about that earlier - we may have to rearrange things - if sleep disruption continues, it doesn't seem very fair leaving twin in with him - although she has learnt to sleep through World War III. Eldest Ds sleeps next door and starts school in Sept. can't have him falling asleep on his desk in reception class really can we.

I think Ds is still a bit too young/wobbly for trampoline/rocking chair - I tried today with the chair, he just didn't get it and his twin sister, decided to use it as a surf board, which wasn't the highlight of my day - back upstairs with that one I think for now. May invest in trampoline - I'm sure if he doesn't get it now he will in the future, and his twin sister, will use it straight away.

As for the age and specificity - I absoultely agree, I was taken aback - I expected a battle to get him say "it maybe autism", when he said it was, we'd start the formal diagnosis, it would be over in four months, I decided to push him on where he thought he was on the spectrum, and he answered that as well - he did stress, that we still young and that with pre-school children and the right interventions, things could improve massively.

The fact that it wasn't a battle was a bit of a kick in the teeth - as it mean't that it was REALLY obvious, and the "classic" was a blow, as that puts us at the lower functioning end - that said, we know what we're dealing with and we can get on with it.

As for bunkbeds - I always thought they were really cool as a kid!

J

you could try melatonin for night time wakes to try and settle him back down

my ds still wakes even on melatonin it doesnt keep them asleep just helps them settle my ds wakes 2 times through night sometimes will go back off sometimes wont we just have to keep it all calm and relaxed sometimes a bit of buttered bread melatonin and warm milk can get him settled back but in our room not his we have bed on the floor in our room as he has night time separation anxiety and we have found laying there he will go back off but not if trying to get him back to his own bed

I don't think 'classic' has any clear meaning other than that the child is not very obviously high functioning at the time assessed. I would just get started with therapy and take each day at a time. We are 2.5 years further down the road and the outcome has been better than expected (i am a pessimist) but we have not merged with neurotypical either. But by that stage, your whole life outlook will have changed anyway.

have you tried ringing follifoot riding stables ? they do riding for the disabled and might be able to help re horse riding ?

Hi all,

Been on a marathon, partner away for three nights "can I cope" session, followed by SS. meeting this morning... keep on keeping on.

bubbla - melatonin seems to be helping - we were prescribed a two tablets before he went to bed, we're giving one to go down, which def. helps to settle him - and we're keeping one in reserve, we've only used this once through the night, and it appears to have done the trick - fingers crossed. We tried the vallergan once more - never again, unless we're under really dire circs, which i'm sure we will be at some point.

Cyberseraphim - yes, we know. It was just the term coupled with how definitive he was! WE thought we'd have a battle for dx, he came out and told us straight... We do remain positive, we will remain positive, I'm determined given our early dx, to make the absolute maximum out of the next two years or so, and really puch him along that spectrum - if you see what I mean - we know we can't cure him, but we can make a difference. God it's hard keeping that balance between, optimism and positivity, and realism...

bumpsoon - yep - we've heard about that, it's on the list - do you know if they'd be cool with nt siblings?

Hey, thanks again everyone - this place has made the past month or so, so much easier than it might have been. Ta!

J