Cant sleep of to London 2am Thurs

[coff33pot]

Not posted much due to being in highly strung mode this week and so in lurking mode as nothing remotely positive will come out of this keyboard lol.

I was ok whilst bricked in with endless deliveries at work for the bucket and spade brigade that are about to encroach on us but now I have the jitters now everyone is in bed.

I am going out of my comfort zone. Not staying there but driving up and doing it in a day. Mad I know but its the only way I can have DH for support. I am scared shitless. Forked out for 4 new tyres on the car and DH said they were already fine, garage man said they were fine but I had them done anyway.

I even booked a hair do. ME I dont do them anyone faffing around with my head drives me bats but I thought if I looked different maybe I would feel better and not look so crap but I looked in the mirror just now and thought nobody can take the stressy old face away whatever I do.

I dont have any housework left anyone would think I was going away for years.

What if it all goes wrong. What if I fuck up and clam up. What if they are like camhs down here or the rest with deaf ears and I am just putting DS through hell of observation just to have the door closed with a " hes complex dx I will give you that try a social story"

I got 2 NT kids desperate to understand things as to why their brother is this way and get some normality to life and a DH who right now feels he is doing it all wrong, hes not but saying it isnt enough right now.

Up till now DS is oblivious we are going and I have remained calm. I am going to have to tell him we are going on a trip but its going to freak him out and I dont want to hurt him for it all to go wrong. If I tell him its all going to be ok and I will be there then he will stay as calm as anything and just follow my lead copycat style but no proff is going to see him perform apart from his obvious tics as he loves adults and loves nice quiet plain walled offices!

Its silly oclock and this is a diary of a nutter :(

Hope it goes well.

It'll probably be a long day for you, and I won't tell you not to stress, as that is most likely similar to telling you not to breathe. You'll stress because you're a caring mum who is worried.

But I hope it all goes well today.

Coff, be prepared.

I'm not sure where you are going but I suspect it is somewhere carefully chosen for you to go to those lengths.

You'll go to the appointment defensive and hoping to convince a skeptic that your child has problems but be treated as a mature sensible adult and have your fears confirmed.

That's not nice even if it is the outcome your DS needs.

hope all goes well tomorrow coffee

A big day ! Hope it all goes well for you.I expect you are totally prepared with prompt notes etc.
I had the same 'problem' with DS. Every time we went into any sort of paed appointment he went into compliant mode......I filmed him in the end and took the video camera with me.
Hope you get some answers for your whole family.

Hope it all goes well. From what I know of the Maudsley (although I don't know the team you are going to see), you will be listened to, not fobbed off and they are experienced enough to know that dcs are not necessarily going to show all their behaviours in such an artifical setting. Hope the journey goes well. And as for all the overpreparation I can understand it exactly!

Wishing you good luck for your appt coff33pot. Really hope it goes well. x safe journey too.

Hope you got to sleep eventually. We'll all be thinking of you and holding your hand across t'internet. Repeat after me, "It will be fine, I will be fine, DS will be fine."

Good luck coff33pot.

Hope it goes well for all of you.

Oh my gosh thank you so much guys for your support :)

Star its the Maudsley Autism and Related Disorders services. Yes I am prepared I think. If it doesnt go well I am going to crack and if we get dx plus answers I am still going to crack that is why I really needed DH to come with me as I dont fancy being in London on my own in normal circs let alone in a state with DS as I am close to the nearly not holding it together mode even for families sake if I am honest.

Today has been hellish. Started am with kettle deciding to burst (sorry but thats major I NEED my coffee lol)its seams and leak! DS shoe velcro snapped and no he WONT wear anything else apart from wellies so went school in the heat in those. Portable DVD ordered and arrived without the in car adaptor so rushed out to buy another plus more shoes for DS only to find set it up is didnt bloody work and neighbours soon learnt that I am not the peaceful little person they thought I was lol as boy did I swear! Then phone call from school to say DS had bad toothache and there is no dentist available so off to emergency dentist we go.

Hair do....................well this will make you laugh and yep! go ahead because I actually sat in the middle of the path and roared with laughter too because it was the icing on the cake that burst the bubble.

Goes to hairdressers and was brave enough to attempt colour and mild highlights. £55 later I walk out thinking "hmmmm not bad scruff it up a bit when I get home to feel more me". Goes to buy nice large latte thinking I go an stroll in the sun for 20 mins before home to chaos........buys it walks along seafront.....everyone minding their own business walking doggies etc and I decide to phone DH......midst of phone call yapping away I take a sip of coffee only to walk straight into a jutting low balcony that has been there for ooooh 80 plus years lol.....yes you got it coffee was face level....smash up in the air all over my face hair and shoulders people rush over shocked and concerned which normally would irritate me no end but I just cracked up! Lesson learned NEVER talk on mobile and by frothy coffee after spending £55 on a hair do lol

And no ellen I havent slept yet maybe I will on the way back tomorrow

Bloody hell! You've had your three times bad luck. You have been pre-disastered and nothing more could possibly go wrong...

I have a lump on my head, the startings of a black eye and my best cardy/jacket has a hole in it.......I am saying nothing lol

I have just explained to DS that we are going on a long trip as we are going to see some people about him and that they are extremely nice and have invited you to London. He gave me an odd look and I have laid out timings of where we are stopping etc and I have laminated a road map so he can direct daddy all the way plus the chance of watching the new Puss n Boots DVD and Tin Tin on a player in the car plus a new torch to be a spy at night has won him over so far. He is now asleep sort of. :)

Oh my!! Best of luck that things improve now!

How'd it go, coff33? Let us know when you wake up.

Wake up? I still havent gone to bed we got home 1am! what a journey!

23 hours in total. Our appointment was supposed to be only 3 hours but ended up 6! It took us 4 hours to just get out of London to the M25. And they took DS away for all 6 for his own assessments.

It was a full autism assessment score questionaire they did with us, they did not show on that TV programme a while back. We still have to go back again in 12 days for another 4hour stint which will involve observations. Hard to explain but I think the ones we have seen plus some others stay behind a magic window in a room whilst we are in this other room like a front room with the Proffessor who we have not met yet. Everything is all recorded and videoed too as well as observed and so a whole team of people will come to a diagnosis followed by thorough discussion on each assessment and diagnostic tools and a care plan put in place.

I have never answered so many questions and I feel dh and I both cocked up on many as we were so tired and so many questions that seemed the same but re-worded it all merged into a muddle but I think they understood this and kept apologising as it is a tough assessment, there are still more to do by phone tomorrow! Being back on my own turf though and at home the answers are staring me in the face now so I am writing them down now to tell them when they phone with the rest. I am so tired but if I dont I will forget I just know I will.

All I can say is that it has been one huge emotional rollercoaster. Everything is so big, so fast, so busy and so many cars and people. DS was good as gold all the way up and back. I think he was so shell shocked by the whole thing it was his worst nightmare (and mine!) I think but because it was so continual he was sort of froze in time iyswim. He hardly talked at all and he talks constant. He got angry just as we hit home and to be honest as DH calmed him and put him bed I came down and bawled my eyes out in relief I was back I think. I see a tough day ahead tomorrow for us with DS but I can fully understand why.

How do I feel about this place? Well this all hurts whichever way it goes so if I be logical and put that aside for a minute I wish to god they had something so thoroughly proffesionally intense and stressful in every county instead of having to travel 300 miles after 14 months of upteen appointments staggard, fighting, worrying and doubting. NOT ONCE did I get asked if I had PND!!!

3 mugs tea and written notes I am going to bed might wake up next week lol

wow coffee, what a day, all sounding positive so far. Hope you're getting some well deserved rest.

Omg that sounds horrendous. Poor you. I suppose though they are trying to do in one session what locally they would spread out over years.

Hope you have relaxing stuff planned for the weekend and do let the whole family off the hook tomorrow.

Just read your post take it easy and let me know when you've recovered.

See you soon. :)

Wow Coff That sounds so stressful but at least you are finally being taken seriously.

That must be tiring... I had to take DS to London for a two hour appointment and I thought that was bad. Well done for getting through 23 hours of that... hope you get some rest and DS is good.

Thanks all :) Yes Star it was horrendous and felt a bit like an interogation the way the questions kept coming going from birth to 6 then back down to 4 yrs then up again then back. they also wanted to know about family and siblings right back to GPs, our education. My brother has OCD dx and my mother was/is a manic cleaner though not dx just memories we have. DS has a lot of my bros traits and both him and I hated school (mum took him out) and learnt everything outside of it, self taught ourselves and past exams high rate. He can build anything from scratch from computers, tvs to cars and bikes. From the phone call questions today they were again family orientated so I think they are considering that whatever dx has it is possibly hereditary.

They are looking into possible Tourettes too as I showed them some vids of his tics.

All I got to do now is pray the tankers dont strike as with all the panik buying we couldnt get any fuel anywhere our end today. Which has hampered our deliveries and of course we lose money for that but more importantly we need the fuel to get to London so DH can come with me as it will be another day run.

DS was hell on legs today and only now has he slowed down. We have had coffee and washing up liquid experiments which he must have got up to do and whilst cleaning up. He heard me talking to the psychologist and that upset him and when I got off phone he said he was upset and angry with himself but went into the bathroom and I had shaving foam smeared everywhere so I cleaned that to find he went down stairs and had used a permanent marker on himself said he wanted to be invisible or go to heaven :( I cried infront of him and said this makes me so sad we could just hug and look after each other all day instead of making such a mess but he merely looked straight through me and walked away and said "I am shutting the door a minute as you need to calm down" and just turned on TV and ignored me so there was no empathy there today :(

All was expected though and he has not long impulsively come up and given me a bear hug and ran off so I think I am in for a peaceful night at least :)