we are *desperate* for help with ds1, aspergers? anger issues? 'normal' stroppy 6 year old? haven't a clue and have reached the end of my tether...

[frazzledfairy]

dh and i are just desperate for help and don't know where to turn. i feel we are failing ds1 (6 1/2 years). we had a assessment at a childrens centre on friday for aspergers and although he scored -26 on a test they did that apparently if they get a minus score at all that is an indicator of being on the autistic spectrum, apparently he hasn't got aspergers because he has no obsessive tendancies and doesn't struggle socially (although he has had massive social probs in the past). he is reasonably empathic (for a 6 year old!) and understands literal humour.

it is probably easiest (and most likely to be legible!) if i list his 'strengths' and 'weaknesses'.

soooo.....

strengths

very quirky and funny
great sense of humour
amazing at reading/writing
extremely bright and articulate
can be very affectionate

weaknesses

no eye contact whatsoever
regularly switches off (is in another world and we can't 'reach' him)
has huge (yet fairly short lived) tantrums over the most obscure/trivial things
can be extraordinarily rude to adults
very poor spatial awareness
very messy eater
has soiling probs(is on movicol)
seems to lack confidence/be insecure

he is a jekyll and hyde type character, he has real extremes of happiness/anger/sadness.

the major issue for us is that we feel he isn't happy, doesn't feel secure and loved, and his anger is very hard to deal with. he goes through stages of hitting himself and saying he is stupid and he isn't important which breaks my heart

he has had a huge amount of change over the last 18 months. i was a single mum till sept 05 so since then he has moved house, changed schools, gained a daddy and got a new baby brother! all the changes have been positive, he is far happier at the new school and we have now own a house so no more moving around. he loves his daddy and adores his baby brother. however still alot for him to deal with.

he has always had poor eye contact and seemed very other worldly, untill recently he really struggled socially, he just couldn't seem to understand other children. however the anger thing is more recent, maybe started a year ago.

i feel slightly like i'm going mad, i just don't know what to do to help him. i hoped at the assessment the panal would say he was borderline/high functioning aspergers and help us.

can i just add he has no probs at school, his teacher has commented on his lack of eye contact and 'away with the fairys'ness but thats all.

we really need advice, tia

Im am going through similar at the mo with my 5yr old ds. He is exactly as you describe him as well as being very emotional. We are waiting for an Ed Pysch to go into his school and assess him.

My friend told me about a centre in cardiff, the discovery centre (if you google it im sure it comes up) Although its private and can be expensive! Apparently they are very good x

Julez are you local to SE Wales? We're in Caerleon

the dyscovery centre (why have I not heard of it?) looks similar to \link[http://www.bibic.org.uk/\ the} one we use

whyc ant I do links today?

this

i think i am first going to ring the centre we went to and ask to see a different specialist. see what they say and if they try to fob us off or make us go to the bottom of the waiting list (took 5 months to be seen this time!) i will go back to the gp.

starting to feel rather now, hell has no fury like that of a pregnant woman

Peachy I am not far from Cardiff - Bridgend, I am gonna give the centre a call and get prices, once our mortgage comes through in a few weeks we may be able to afford it rather than be put on a waiting list. Its so heartbreaking everymorning

doa sk about help with finance- we get ours paid under the children in need scheme for ds3 (and ds1 was funded by another charity) so its doable even if youre not well off

Peachy How do i go about getting funding? I have contacted the dyscovery centre and its £650 for each member of the team, we just dont have that kind of money and Im getting a bit desperate tbh I just emailed our local SEN team to see what they think!

Well we go to BIBIC and when you sign up (its cheaper anyway! About £800 covers 3 full days there- its SOmerset, just off the motorway, takes an hour from here in Caerleon but they can let you stay there for very little money) you can request a fundraising pack, they also do bursaries for people- they have a strict policy of never refusing help for financial reasons. So they help you to get the finances together.

Also if you phone up, instead of just giving you a set price, they arrange a date for a long, free telephone chat where they work out exactly what your child needs with you, and plan assessments from there. Thats a no commitment it- you decide afterwards if its right for you.

However if you're set on the Dyscovery centre you might still be able to get funding. A good palce to start 9worked with us) is occupational schemes- DH is in the news trade so a group called NewsTraid paid for therapy for ds1. Try searching on bursaries and the occupations of your family? If not look up trusts and grants.

UI am surprised nobody ran through this with you, tbh.

Peachy I totally agree, no one has gone through anything with us! HV is leaving it to his school to sort out which surprised me, surely he will need to see people after school too?

The school just gave me a print out to read about 5 weeks ago (beginning of term) and I asked them then could they get in an Ed Pysch which my friend advised me to do. Only today have I been given an evalutation questionaire to fill in. Ive filled it in and where it says parents views Ive gone on for about 1 and a half pages Dont know whether its too much or not! Hopefully we will get somewhere now, but will look into that place in somerset tomorrow!

Thanks for your help x

ff, sounds very difficult particularly dealing with his anger and unhappiness.

Has he changed at all - e.g. used to have eye contact and now doesn't or has he always been like this?

Some people if they can afford it pay for their own help from psychologists because of the long wait on the NHS but it's expensive.

(ps presumably he does have a birth father and now he's gained a step father - does his original father help or have advice or even could help pay for extra help or even just respite - weekends for you two to get a break whilst he's with his father?)

Good pints Xenia- although eye contact can be missing from birth or be lost depending on the individual child (I have one of each LOL).

Private Psychologists are excelelnt amnd the NAS can recommend ones (National Autistic Society) but the only proviso I would give is that Jenk1 on here has had a devil of a time getting the LEA to accept the Private Psych reports, and is having to take them to triibunal.

I've used a private psychologist a few times with my children and my sister has very recently although her children are not in state schools so she wouldn't have LEA issues. If you can pay you can usually be seen fairly quickly. (She' s a psychologist herself actually and some NHS patients will wait 6 months even a year to get referred to her which is dreadful if you have an urgent issue).

They are good definitely, its just that LEA's have the ability (ours doesnt, but then saves them cash doesnt it?) to discount private psych info from thir statementing etc.

We use a mix, BIBIC offer private therapy and we also access state where possible. Yet state SALT, for example, isnt available to us (no one in position atm and then a huge waiting list if they get someone in) so we use *(or will when it comes up) private, but we've been fortunate enough to get funding for ds's (and for me to have been born in the shadow of BIBIC so I know what they offer)