ASD moms....Info needed by TOMORROW!!!!

[JaysMum]

I have been in contact with a Professor who is big in the ASD world......got to try every avenue to get my J the help he needs.....he is still hitting himself with anything that he can get his grubby little mits on....and still saying he wants to die.......

He has had a look at J's paper work for us and asked us tons of questions via email and phone today.

He has told us to phone Guys Hospital tomorrow morning and speak with Dr Gillian Baird......I'm sure I have heard her name before.....who is she?
She will be expecting our call........
I didnt want to appear a total numbskull because the Prof was talking about her as if I should know who she is!!!!!!

He is sending all the info we have given him this afternoon to Dr Baird so she will know what I am talking about when I phone tomorrow at 10.30......just wish I knew what I was talking about sometimes????????

Can anyone fill me in???????

Cheersxxxxx

yes that would be nice. Speak soon xxx

One of the theories of SIB is that individuals with ASD have higher levels of endorphins which make them feel pain less. It is also possible that, by hitting/hurting yourself you produce more endorphins which make you feel less pain and make you feel "happy". Research also shows that the typical sites of SIB often coincide with the sites used by acupuncture.... very intersting!

Davros, Our GP is big into accupuncture. He has told me to put pressure on J's earlobes to try and help him calm down......might have a chat with him about this theory.
I asumed J was hitting his arm against the wall because he was getting some sort of sensation....he said it felt nice....I thought maybe sensory....now I understand about the endorphins.....thanks for that.

That is interesting Davros! Do you know where could I find some more info on this please?

My ds (AS) self harmed for quite a while when he was younger and was eventually referred to CAMHs. He now only tends to self harm when he is upset and is going into meltdown but even when he was just about able to walk, he would throw himself to the floor in a shopping centre and headbut the marble floor - very painful, though as you say Jaysmum, he didn't appear to feel it.

He was really crying last night because he was talking about dying and got very upset, but then he will say that he wishes he was dead and tell me how he'll do it.

My heart goes out to you Jaysmum - it's awful and must as you say be very upsetting for R. Good luck with Gillian Baird - I loved Davros's discription of her! x

Busy morning here in the MadHouse....

I have spoken with Dr Gillian Baird and she has agreed to see J following the correspondance she has received from the Prof. We have a 4 month wait. Just have to tackle the funding issues now!!!!! Appointment made with GP to get him to start the ball rolling.....fingers crossed the PCT agree this time without support from Paed, who is very anti diagnosis!!!!

Have now got a solicitors appointment with Sinclairs.....thanks for the info....much appreciated.

Disability Law Service have told me to write to Social Services and insist on an assessment under schedule 17 of the Childrens Act and they also put me in touch with the Education Law Service who are sending me loads of info.

Had a phone call from LEA informing us that J will not be getting any help from them with regards to Link Education.......asked them to confirm this in writing......ummmmm we'll see about that!!!!!

Schedule 19 of the Education Act states that any child whom is unfit for school due to medical reasons is entitled to Link Education.....the LEA are duty bound to provide it.....so we'll wait now and let the solicitor take charge.....just have a feeling that once the letters start flying to and fro....we will get J into his school placement a lot quicker.....but I will not let it rest then....the LEA will have to account for their failings in providing J with the education he desrves....and has deserved for the past three years.

Feeling very militant in my old age!!!!

You have been busy!

You deserve a day at minehead!!!!

You have been busy!

You deserve a day at minehead!!!!

Why is it you think you are making steps in the right direction.....then someone come along and knocks you back down?????
J has been an angel this morning.... a really happy chap...we have done lots of painting and planting....our topic is plants for this week!!!!

Whilst I was on the phone to the solicitor J fell over and landed smack bang onto one of the plants he had planted....it broke.
He sat screaming at the top of his voice...I ended my call and rushed to him.

J has been in meltdown since...he has hit, punched and bitten me, he has hit himself really hard in the face with a wooden spoon.He will not stop screaming that he wants to die.

Hubby is with him now upstairs and he is sleeping it off. I have called the GP....we need help fast......the only way we can get this help is if we take our son to the hospital and hand him over to the childrens ward where he will be put into isolation and observed....we will not be allowed contact with him for the first 3 days....I cant do it...I cant leave my baby...I cant stop crying....I just dont know what to do anymore....it has taken us so long to build the bridges with J for him to trust us...he hated us because we sent him to school....now if I leave him and dont see him he will think I have deserted him....a couple of hours with me missing and he is screaming the place down....how will he cope without me......I cant cope with this anymore.......Why does it have to be like this?

Oh Jaysmum I'm so sorry. I haven't got anything useful to say but I just wanted to let you know I'm thinking of you and your DS. I don't begin to understand why he has to be placed in isolation for three days - that sounds dreadful

i am so sorry- not much any of us can say- you must vent it all on here.

i am starting another thread- i started to add 'my day' here- but decided that you needed this space for yourself

Jaysmum, sorry to hear that things fell apart today. It sounds like a real stuggle for you at the moment but at least you've got things in motion.
I first heard the endorphin theory at a presentation on SIB, I think I sent the notes to a couple of people on here. The Dr who gave the presentation has done some work with Eric Emerson who is the best-known expert on SIB, I've got his book somewhere so I'll look in that to see if its mentioned. I can send those presentation notes to anyone who wants them.
Choc, I'm not sure that what you describe would be classifed as self harm rather than SIB if it didn't hurt him iyswim. I think that self harm is supposed to hurt to block out other bad feelings and it also used as a way of having control. Mind you, SIB is supposed to be very closely linked with communication although I suppose that even in someone who can speak very well they may find it hard to describe and express their emotions with much subtlety so that could be a difficulty in communication too.

Davros....yes plaese....I will CAT you with my address. thanksxxxxx

i can email them to you

Thanks...I have Cat'd you....so you should have gotten my addy from that.

Got CAT, will email later (must get dressed now!). Had a quick look in my Challenging Behaviour book (the joys of my ASD library!) and it is exttremely technical but does mention endorphin theories but not acupuncture.

Thanks for that....just got out of the shower myself!!!!!!!!

we recently had an assessment for my son with an OT and she explained that children with asd often have a problem with their inner ear balance(vestibular?) basically and this causes them to have a sensory problem in that they hit out or bang against things or other people in order to get feedback to their senses. they have to push harder on something for example ( a wall) to get a slight sense feedback that we would get from just brushing against a wall . therefore they have to do everything harder .. and they get a buzz out of rocking , banging, spinning for exactly that reason. so we`ve been advised he needs to give his inner ear a workout which will improve everything! which includes trampolining(excellent for them!!) spinning, swinging.this all helps new neurons to form and grow so improving his co-ordination, sensory input etc. its very interesting and when i read the report it made me realise.yes now i know why he does that which includes hitting himself in the face but he says it doesnt hurt him.. and probably doesnt as well which is why he doesnt understand his own strength when he hurts his sister . were going to do a program for him ..i must recommend the OT in london. she was lovely and my son asked when he could go back and play with emily!!

The programme you are explaining sounds very similar to the one we are currently using with J....he hs proprioception difficulties as well as Sensory Integration Dysfunction. When I spoke with our OT this morning she said she does not feel that J's face hitting is sensory related and more along the lines of what Davros has been saying about endorphins being released.

Just want to pick your barins now girlies.....

EP or CP to dx?????

EP has previously assessd J and has completed a very detailed report on J's educational needs and learning style. J adores the EP...we have seen him quite a few times over the past six months at various social events at BIBIC.

EP suggested that J should be seen as a child presenting with Aspergers and that he should undergo a local multi-agency assessment for ASD urgently.....that was in April 2004.....multi-ageny assessment is not due until Sept 07!!!! Funding don't you just love it.
EP can assess J in May and perform the DISCO assessment at his office for £640 + the dreaded VAT.

NAS have put me in touch with a CP who undertakes private assessment for ASD. I have chatted with him today. He is appalled that even though Gillian Baird has agreed to see J quickly....next 2-3 weeks!!!...our PCT are refusing to fund. GB would not see a child so quickly is she didnt feel there was a problem....
CP asked us a thousand and one questions...I read a few snippets from the reports we have and CP said he could see that J is presenting as having AS.He is happy to assess J and will come to our home at 7.30am and stay for the day until bed time....whatever time that may be!!!
He will perform DISCO assessment as well as a few others. We will get his report within 2 weeks.
He can see J anytime....he fits in with us as and when....he will charge £900 + VAT.

EP's reports where discounted by LEA & LHA because the local professionals had no experience of the EP....although he is highly regarded amongst other EP's we know from up country.

CP is based in our county and is known to the local professionals, but not to us or J.

J does not like strangers coming into our home....he will freak and follow the guy round with the bloody hoover.....no one is allowed into our house if they are wearing shoes....and if he smells funny J will bite the guy....but then maybe so will our puppy dog!!!!

So which one would you go for????

Someone who knows J and we all get on well with, but no one here knows him or his reputation.....or a CP who is well respected but hasnt met us or J before and is coming into our home and is likely to upset J????

Oh decisions , decissions.......

barins ....what am I like...I mean brains....the thing I am lacking a few cells of!!!

I really need some advice
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just a quickie ..... depends how severley J would be upset.......my gut instinct is to get thE CP TO DO THE ASSESSMENT....but GET A PRELIMINARY 'NEUTRAL GROUND' MEETING ARRANGED IF POSSIBLE FIRST... so that J gets to see him 1st.

Reason for suggesting this is
1/ better j behave in this 'normal' way around strangers....rather than 'less normal' infront of someone he knows well.....reason i feel this is that i assume j feels the same with any strangers??? so this person would be able to observe a larger range of behaviours than the EP.

BUT ONLY IF YOU FEEL J WILL NOT BE SO STRESSED....I UNDERSTAND TOTALLY THE FEELINGS YOU HAVE ABOUT PUTTING INTO SITUATIONS WHICH ARE UNCOMFORTABLE ETC FOR HIM

2/ BETTER TO HAVE THE PERSON THAT IS RECOGNISED WELL AMONGST THE PROFESSIONALS....AS THEY ALREADY HAVE 'LINES OF COMMUNICATION' IN PLACE....AND KNOW THE WAYS EACHOTHER WORKS.

3/ I LOVE THE IDEA OF A 'DAWN-DUSK' ASSESMENT...EVEN AT THAT COST...AND SO SOON....
is there a chance that J will 'get used to the CP' after a while...so that you can feel less guilty about 'putting J though it all'??? or will he stay anxious till the CP goes...... as obviously it's one thing to suffer an hour....but not if J has to endure 12 hours??

if you got a photo of this man- would you be able to show J this as part of a 'warning-Social Story'

Must admit I would LOVE to have a 'Full Family Assessment'.....wonder what THAT would cost!

photo is a good idea Mrs f...thanks.

Bump....I need your advice!!!!!!

I hadn't seen any more of this thread. Sorry, I can't offer you any advice about your current quandry. Just wanted to offer sympathy, really.

Your ds sounds a lot like mine. He has started hitting himself around the head too, not hard, but it's rather disturbing to see a child do that to himself. Ds has always had a high pain threshold, never thought it was related before.

Oh dear just caught up with this.

Jaysmum - ds1 hits himself when cross as well - if he's really cross or eaten something he shouldn't have then he'll whack his head one something hard (the fact that he does it really hard when he's eaten gluten fits in iwith the endorphin stuff). His SALT used to find squeezing his hads worked quite well in calming him. Sometimes squeezing him in a bear hug works sometimes not.

I think I would go with the CP- you need someone your local authorities will listen to. I have a friend in a similar situation to yours (am I right in thinking j is adopted- her dd's are as well) and the senior clincal psych she has on her side has saved the day on numerous occasions. (because she has ppower locally).

I really feel for you going through this- I know how much my mini battles take out of me- and I've never had to deal with something like this. Hang on in there.