Aspergers/ASD support thread

Sarahsaver

The parent partnership people ahve been fantastic. If anyone here need support I would urge them to get in touch cos they know all the ins and outs of the system, having gone through it loads of times with other people. They are really great.
Also our local freecycle now has an experimental 'freecycle cafe' where instead of things you can swap advice and ideas. i have found on there a lovely woman whose son has ASd and she has given me no end of help and advice.

mandy.h_2

well what a week ive had ds had a complete meltdown on wednesday night and went missing for 4 hours police had to be called then social services everyone looking for him he was found asleep in a bus stop near his school at 9pm by this time im very stressed and worried.

Now got social services doing reports on how we are coping, the cheek tried telling them this was coming months ago and no one believed me they say my dd is at risk of violence from ds, i told them that as well and my gp also did a referal for dd last year. it seems once police are involved they listen more. We have had 3 visits fromsocial services since wednesday more than i had in last 14 yrs bloody amazing however ds not uttered one word to them yet, this is the child according to cammhs is not on spectrum because he socially interacts with people. yes when it suits him

am now waitng for a meeting with everyone there school,camhs gp and us but wont hold my breath.

On a good note ds is happy because he won medal on sunday playing rugby and dont know what all fuss is about he is home now.

Blue monkey my son is saling through school academically its the social side he cant cope with and understanding things said to him his iep states its all supposed to be in written form but its not ds scored high on some of his tests but only very low on others so i think they follow a pattern

if you are going private i can reccommend a proffessor called digby tantum based in sheffield we used dla money cost 400 but he is supposed to be best in country you get a full report afterwards and loads to fill in and send back before he even meets you i know a few from our support group who have had to resort to going private and used him.

Sarahsaver

Mandy sopmetimes something terrible has to happen for change to occur.
I had a similar problem, DS had little ds in hospital 3 times, and i even stood there at the reception in A&E pleading for help saying 'if i had done this to my son you would do something about it' little DS has had head injuries, and injuries to the genitals from DS.
Also DS has run off several times and also tried to commit suicide. Luckily the paramedics were v lovely and they referred us to social services whereas before SS didnt take me seriously when i said we were struggling.
It is a shame it has to come to these extremes though.

SingleSue

Bm...hello again (I'm not following you around honest!)

As I put on your diary thread in the other section, the road to getting a diagnosis is not always easy (in fact it rarely is) and even when you do get a diagnosis there are always some who want to take it away again!

We are currently going through this with middle son, he was originally diagnosed ADHD with oppositional disorder, then that was taken away and we were told I made it all up! He was eventually diagnosed as having aspergers at nearly 6 (the whole shenanigans started before he was 2) and now because he seems to have settled (as in doing well educationally if not socially), they are questioning his diagnosis again. He is statemented but does not receive the help laid out in his statement (as in 25 hours a week 1 to 1) although his school are receptive to his needs and try to ward off any problems before they occur. The big fun is going to come this September when he goes up to high school...it was bad enough getting him to change desks in the same classroom let alone changing a classroom every lesson!

Youngest son (complex autism) however needs every single one of his 25 statemented hours plus more, he is classed as being a maths genius by his head master but only on a one to one setting (as in only him and one other in the room) , in the classroom he is approx 3 years behind when they do the tests. His school has been absolutely brilliant, putting in the extra hours where needed, drafting in and employing extra staff for him, changing the layout of his classroom, building and providing a calm room plus a break room for him and even changing his arrival and departure times (with a teacher having to be paid extra for being at the school extra early) for him, it really is a testament to them that he is still in main stream schooling and not completely floundering (he did spend time at the local specialist school, along with his teachers from the main stream school to bring everything in though)....this is so different to the first school he went to who completely ignored the reports from the specialists on what they needed to do just to get him in the classroom.

You will probably find me gracing these threads ever more in the coming months, especially with middle one going up in September and then probably with an ever desperate me come October or November when we are back to the child from hell again because he is overstressed!

I dare not think about next September, there is no way youngest will ever cope in a main stream high school.

mandy.h_2

i know what u mean my ds has also attempted suicide rather than go to high school but by time he saw dr it was made out to be a game gone wrong, but ds doesnt play games never has, the only reason dd has not been injured thank god so far is because i never leave them alone even though they are technically more than old enough (14 &16) its just not woth the risk, i always intervene and get the bulk of his fury. however dd finds this very distressing to seeand ds once callm self harms over the guilt. can i ask what extra support you got cause ss are coming tommorrow i dont want ds took away but need something in place to help and does anyone know if there is a group for siblings to become involved with

Sarahsaver

There is something called the Family Welfare Association I do not know if they are just here or national. They have so far provided play therapy, for DS and my other2 kids, trips out individually and as a group, play sessions, peer mentoring group for DD (ASD affects the siblings a LOT)
You can ask for 'Direct Payments' from social services to provide services which may be of benefit to your child/family. This is for services you may think they ought to provide but instead of them providing the service you find suitable things and pay with the direct payments. Look on the direct gov website for more infio.
I had a 'crisis team' for a couple of weeks last summer and she helped with boosting my self esteem and also setting ground rules for the kids.
The injuries DS did to little ds happened in brief moments when i was out of the room, there was a time i had to watch him 24/7 but thankfully (touch wood) he has calmed down a lot.
I know this may be hard for you but tell them you feel unsafe, you ARE unsafe if you are having to come between your kids to prevent your child being injured.
do you have a local Autism/ASD support group? They would be a mine of information.
Our local red cross has support groups and a summer activity /play scheme.
is your DS at a special school or getting enough help at school?
Does the school know what you are going through right now?
Young minds is a charity which will give you free counselling over the phone and also sent me loads of useful literature.
NHS direct sent me a list of local services once when i had problems with ds and he had me barricaded in a room.

mandy.h_2

thanks for info i do attend a support group who if im truthful has been a life line at times, at present there is no one to do direct paymentd were i live ss say we have to wait, school know exactly whats going on and say he is good but every week i get a letter for yet another detention for bad or rude behaviour am waiting for his review to sort this out i will try the othe organisations u have mentioned once again thanks

verysillyguy06

Sarahsaver wrote: »

There is something called the Family Welfare Association I do not know if they are just here or national. They have so far provided play therapy, for DS and my other2 kids, trips out individually and as a group, play sessions, peer mentoring group for DD (ASD affects the siblings a LOT)
You can ask for 'Direct Payments' from social services to provide services which may be of benefit to your child/family. This is for services you may think they ought to provide but instead of them providing the service you find suitable things and pay with the direct payments. Look on the direct gov website for more infio.
I had a 'crisis team' for a couple of weeks last summer and she helped with boosting my self esteem and also setting ground rules for the kids.
The injuries DS did to little ds happened in brief moments when i was out of the room, there was a time i had to watch him 24/7 but thankfully (touch wood) he has calmed down a lot.
I know this may be hard for you but tell them you feel unsafe, you ARE unsafe if you are having to come between your kids to prevent your child being injured.
do you have a local Autism/ASD support group? They would be a mine of information.
Our local red cross has support groups and a summer activity /play scheme.
is your DS at a special school or getting enough help at school?
Does the school know what you are going through right now?
Young minds is a charity which will give you free counselling over the phone and also sent me loads of useful literature.
NHS direct sent me a list of local services once when i had problems with ds and he had me barricaded in a room.

Hi all...i am a social worker in the dcs in north yorkshire..i am not sure if the rules for direct payments are everywhere the same but here is a slight 'damper'...i am sorry...please feel free to ask questions...unless u are an open case...no direct payments are offered...unless u have have someone ready to be a direct payment person for u.... dont bother...it is very very rare to find some one through adverts...howver, u can emply anyone who does not live in ur house hold...so..it could be ur parents...hope that helps...good luck...i must say this forum is full of fantastic parents !! i have worked many years in residential care i do know a littele bit what you all have to cope with...u are doing an amazing job...!!!!!! Direct paymnts can work very well...by the way...

SingleSue

Oh respite care....now that would be lovely!

Tried and tried and tried but no joy at all, despite having a nervous breakdown because of the stress.

One thing I will never ever do again, is ask social services for help as they decided there was some fault and only after several (very annoyed) letters from specialists involved with my boys, did they back down and say I was doing a good job.

To add insult to injury, they then asked me to run an Autism support group for parents as I was doing such a good job! (I did say yes eventually but it never came about because they then started moving premises and at the same time closed their books/file on us)

Oh and I still didn't get any respite help after all of that!

By the way, not all are the same, think it must just be this area as I have heard many similar stories from other parents of special needs kids.

verysillyguy06

SingleSue wrote: »

Oh respite care....now that would be lovely!

Tried and tried and tried but no joy at all, despite having a nervous breakdown because of the stress.

One thing I will never ever do again, is ask social services for help as they decided there was some fault and only after several (very annoyed) letters from specialists involved with my boys, did they back down and say I was doing a good job.

To add insult to injury, they then asked me to run an Autism support group for parents as I was doing such a good job! (I did say yes eventually but it never came about because they then started moving premises and at the same time closed their books/file on us)

Oh and I still didn't get any respite help after all of that!

By the way, not all are the same, think it must just be this area as I have heard many similar stories from other parents of special needs kids.

I am sorry to hear that...one problem seems to be that ADHD and aspergers are not seen as fitting into the dcs....they belong apparently into the main team of social care..hmmm i cannot pretend that the system is good...i am trying work and help a bit ...but it is crazy how little money is put into it...